Young Onset Parkinson's Network Insights

The CEO of You: Why the Holistic Approach is the Only Way to Manage Parkinson's by Beatrice Zatorska, Founder and CEO of PD Buddy App

Wed, 17 Dec 2025 19:19:15 GMT

There was a time, not so terribly long ago, when a diagnosis of Parkinson’s came with a fairly standard script. You went to the neurologist, perhaps once every six months, they tapped your knee with a rubber hammer, scribbled a prescription for levodopa, and sent you on your way. You were the passenger; the doctor was the driver; and the pill was the fuel. If you were lucky, they might have vaguely suggested a bit of walking.

Those days are, thankfully, disappearing into the rear-view mirror.

We are living through a quiet revolution in how we handle this condition. Thanks to the explosion of information and a relentless push from the community, the script has been flipped. The doctor is now a consultant, the medication is just one tool in the box, and you, the person living with it, are the CEO. We now know that managing Parkinson’s isn't just about replacing dopamine; it is about building a fortress around your health. It is the holistic approach, and frankly, it is the only game in town if you want to do more than just survive.

The Heavy Lifting: Exercise as Medicine

Let’s start with the undisputed heavyweight champion of Parkinson’s management: physical exercise. If you take nothing else away from this, remember that breaking a sweat is non-negotiable. We aren't talking about a stroll to the post office. We are talking about exercise as a prescription drug, arguably as potent as anything you pick up at the pharmacy.

Professor Bas Bloem, a rockstar in the world of Parkinson’s research from the Netherlands, has been shouting this from the rooftops for years. His research, and that of many others, points to a thrilling conclusion: exercise doesn't just mask symptoms; it has the potential to alter the course of the condition. It encourages neuroplasticity, helping the brain rewire itself around the potholes Parkinson’s creates.

The evidence suggests a minimum "dose" of thirty minutes, at least five times a week. But what kind? Well, variety is the spice of life and the savior of neurons. You need aerobic exercise to get the heart pumping and flush the brain with blood—think cycling, brisk walking, or swimming. You need strength training because frailty is the enemy. And crucially, you need complexity. Activities that require you to think and move simultaneously—like tango dancing, boxing, or table tennis—force the brain to work double-time, improving balance and coordination. It is hard work, yes, but the payoff is a slower progression and a body that listens to you for longer.

The Mind Game: Stress, Anxiety, and Brain Training

If the body is the hardware, the mind is the software, and Parkinson’s loves to introduce glitches in both. Anxiety and stress are like throwing petrol on a fire for this condition. You have likely noticed that when you are stressed, your tremor gets worse or your freezing kicks in. This is why managing your headspace is not hippy-dippy nonsense; it is a biological necessity.

Meditation and mindfulness have moved from the fringes to the mainstream for good reason. Spending just twenty minutes a day quieting the mind can lower cortisol levels, reducing that background hum of anxiety that exacerbates physical symptoms. It is about teaching your nervous system to stand down.

Then there is the cognitive gym. Use it or lose it applies doubly here. We are not just talking about doing the same Sudoku puzzle every morning until you can do it in your sleep. You need novelty. The brain thrives on new challenges. Learning a new language, picking up a musical instrument, or engaging in specific brain training apps for twenty to thirty minutes a day helps build "cognitive reserve." It strengthens the neural networks, effectively giving your brain more backup systems when the primary ones falter.

The Details: Voice and Hands

While we are busy looking at the big picture, we cannot ignore the details that make life livable. Parkinson’s is a thief that likes to steal the volume of your voice and the dexterity of your fingers.

Voice exercises are vital. The condition makes you think you are shouting when you are whispering. Dedicating time to "speak loud" drills, singing in the shower counts, but formal exercises are better—retrains your sensory feedback loop. Similarly, keep those hands busy. Whether it is shuffling cards, knitting, or specific occupational therapy drills, keeping the fine motor skills tuned is essential for maintaining independence with buttons, laces, and cutlery.

Fueling the Machine: Nutrition and Supplements

You wouldn't put diesel in a Ferrari, yet we often fuel our bodies with rubbish and expect high performance. Dr. Laurie Mischley has done groundbreaking work in this arena, collecting data from thousands of people with the condition to see what actually works. The results are compelling.

The data consistently points away from the "meat and potatoes" Western diet and towards a Mediterranean style of eating. We are talking about fresh vegetables, nuts, seeds, olive oil, and fish. It is an anti-inflammatory feast that seems to correlate with slower progression. Conversely, heavy consumption of dairy and red meat often tracks with faster decline.

Then there is the complex world of supplements. While no single vitamin is a magic bullet, deficiencies in Vitamin D and B12 are common in people with Parkinson’s and can worsen symptoms. Dr. Mischley’s research highlights that correcting these levels, along with considering compounds like CoQ10 or Lithium Orotate (under medical supervision, of course), can be part of a robust defense strategy. It is about creating a biological environment where your neurons can survive, not just cope.

The Social Network: Connection is Vital

Finally, we must talk about the most underrated medication of all: other people. Loneliness is toxic. It accelerates decline, breeds depression, and keeps you on the sofa. Parkinson’s can be an isolating condition; it tempts you to withdraw because you are self-conscious about a tremor or worried about your voice.

You have to fight that urge. Maintaining a vibrant social life is a core pillar of the holistic approach. Engaging with friends, joining support groups, or simply being part of a community keeps the brain active and the spirit resilient. It forces you to communicate, to move, and to look outward.

The Tech Advantage: Light and Touch

In our modern age, we also have access to technology that would have seemed like science fiction a few decades ago. Many proactive "CEOs" are now turning to red light therapy (or photo biomodulation, if you want to sound scientific at dinner parties). The theory is that specific wavelengths of light can penetrate the skull to energize the mitochondria—the batteries of your cells—potentially giving your neurons a much-needed boost.

Then there is the physical relief. Technology like handheld percussion massagers or specialized head massagers can work wonders for rigidity. Parkinson's often comes with a stiff neck or a tight back, and using these gadgets isn't just pampering; it is a practical way to mechanically loosen the muscles that the condition tries to tighten, improving your range of motion and general comfort.

The Art of Living: Music and Creativity

We often forget that we are not just biological machines; we are emotional beings, and the arts are a powerful backdoor into the Parkinson’s brain. Music therapy, for instance, is not just about listening to nice tunes. A strong rhythmic beat can act as an external pacemaker for your feet, helping to overcome freezing when your internal timing goes awry.

Art therapy offers a different kind of release. It provides a non-verbal outlet for the frustration and complex emotions that come with the diagnosis. Painting or sculpting forces you to use fine motor skills in a way that feels creative rather than clinical. It engages the brain's reward system—the very system that is under attack—providing a hit of dopamine that is entirely natural.

The Symphony of Self-Care

When you put all this together—the sweat of the exercise, the calm of the meditation, the fuel of good food, and the joy of connection—you get something far greater than the sum of its parts. This is the holistic approach. It is not about abandoning your neurologist or throwing away your Levodopa. It is about partnering that medication with a lifestyle that amplifies its benefits.

It shifts the power dynamic. You are no longer just a person with a diagnosis waiting to see what happens next. You are an active participant, making daily choices that shape your future. It is a lot of work, certainly more work than just swallowing a pill. But the reward is the best possible version of you, for the longest possible time. And that is worth every ounce of effort.

Food as Medicine: Optimizing Nutrition for Parkinson's by Beatrice Zatorska, Founder and CEO of PD Buddy App

Fri, 14 Nov 2025 17:53:27 GMT

Diet plays a much bigger role in Parkinson’s disease than most people realize. While no single food can stop or reverse the condition, strong evidence now shows that what we eat can influence how symptoms develop, how well medication works, and how people feel day to day. The message from researchers is becoming clearer: eating fresh, balanced, and unprocessed food can make a real difference to living well with Parkinson’s.

The Mediterranean and MIND Diets

Two of the most well-studied eating patterns for brain and body health are the Mediterranean diet and the MIND diet. Both are rich in vegetables, fruit, legumes, whole grains, olive oil, nuts, seeds, and fish, while keeping red meat, sugar, and processed foods to a minimum.

The Mediterranean diet has long been praised for protecting the heart and extending lifespan. More recently, studies suggest it can help protect the brain too. Its high levels of antioxidants and anti-inflammatory nutrients may reduce oxidative stress—a process that damages nerve cells and accelerates Parkinson’s progression.

The MIND diet combines the Mediterranean and DASH (Dietary Approaches to Stop Hypertension) diets but places an extra focus on foods proven to support brain function. These include leafy greens, berries, beans, whole grains, and olive oil, while limiting butter, cheese, and fried or fast foods. People who follow the MIND diet tend to experience slower cognitive decline and, according to some research, may slow down the progression of Parkinson’s.

For people living with Parkinson’s, this guidance translates into simple, practical steps: eat a variety of colorful vegetables and fruits every day, choose whole grains over refined ones, add healthy fats such as olive oil and nuts, include oily fish like salmon or sardines several times a week, and cut back on processed snacks and sugary drinks.

Brain‑Boosting Foods for Parkinson’s

Based on the cookbook “A Cookbook for Individuals with Parkinson’s Disease” by J. Etemovic, the recommendations for eating well with Parkinson’s are both practical and scientifically grounded. The book offers 28 carefully crafted recipes emphasising antioxidants and omega‑3 fatty acids, drawing attention to the foods that matter most for brain and nerve‑cell health. It highlights nuts and seeds as excellent sources of healthy fats and vitamin E, berries as rich in neuroprotective polyphenols, oily fish like salmon or sardines for essential omega‑3s, and green leafy vegetables which deliver fibre, vitamins and plant compounds that help reduce inflammation. The guidance also encourages replacing animal fats with olive oil and using fresh herbs and spices to boost flavour and antioxidant intake. The overall message is clear: include a variety of minimally‑processed whole foods that nourish the brain and support the nervous system, rather than relying on packaged or convenience meals.

Why Many People Go Dairy-Free

A growing number of people with Parkinson’s choose to reduce or avoid dairy products. Several large studies have linked higher dairy consumption—especially milk—with an increased risk of developing Parkinson’s and, in some cases, faster symptom progression.

The exact reason isn’t entirely clear. Researchers believe that dairy may affect the way dopamine is processed in the brain or that pesticide residues and proteins in milk might interfere with nerve health. Lactose intolerance and gut inflammation, which are common in Parkinson’s, may also play a role.

For those who prefer to avoid dairy, plant-based alternatives such as oat, almond, or soy milk are easy substitutes. These options fit well within the Mediterranean diet and support better digestion for many people with Parkinson’s.

The Mischley Study: What People Eat Matters

A 2017 study led by Dr Laurie Mischley at Bastyr University offered one of the most detailed looks yet at how diet affects Parkinson’s progression rather than just risk. The team analyzed data from more than a thousand people living with Parkinson’s who shared their eating habits and tracked their symptoms over time.

The findings were striking. Those who ate more fresh vegetables, fruit, nuts, seeds, herbs, non-fried fish, and healthy oils reported slower progression of symptoms. In contrast, those who frequently consumed beef, fried or canned foods, sugary drinks, ice cream, cheese, and yogurt saw their symptoms worsen more quickly.

Once again, dairy appeared among the foods most strongly linked to faster decline. The dietary pattern that emerged looked remarkably similar to the Mediterranean diet, which has long been associated with lower inflammation and better metabolic health.

Moderate wine consumption was linked with mild benefits, while processed and high-fat animal products tended to correlate with poorer outcomes. People who used supplements like fish oil or Coenzyme Q10 showed slightly better progression scores, although the results for supplements overall were mixed. Interestingly, iron supplements were associated with faster worsening of symptoms, possibly because excess iron promotes oxidative stress in the brain—a key factor in Parkinson’s.

The researchers also noticed a powerful social link: people who had limited access to healthy food or could not afford it tended to fare worse. This finding highlighted that Parkinson’s progression is not just biological but also influenced by lifestyle and socioeconomic factors.

Emerging Interest in Intermittent Fasting

Intermittent fasting—where people limit eating to certain hours of the day or take occasional fasting days—has become an area of growing interest in Parkinson’s research. Early evidence suggests that short fasting periods can activate repair processes in the body, reduce inflammation, and improve mitochondrial function.

Mitochondria are the energy-producing structures inside our cells, and their dysfunction is a hallmark of Parkinson’s. By improving their efficiency, fasting might help protect brain cells and reduce fatigue. While more research is needed, many experts believe it could complement other dietary and lifestyle approaches when done safely and under medical guidance.

What to Avoid: Alcohol and Ultra-Processed Foods

Alcohol is another area where moderation matters. While a small glass of wine with dinner can fit within a Mediterranean-style diet, regular or heavy drinking can worsen sleep, coordination, balance, and medication side effects. For most people with Parkinson’s, keeping alcohol intake to a minimum—or avoiding it completely—is the safest choice.

The same goes for ultra-processed foods. Packaged snacks, ready meals, and sugary desserts tend to be high in salt, sugar, and trans fats, which can trigger inflammation and fatigue. They also displace more nutritious foods from the diet, depriving the body of vitamins, fibre, and essential fatty acids that help keep the nervous system healthy.

Limiting Red Meat and Processed Poultry

For people with Parkinson’s, reducing red meat and avoiding processed or chlorinated chicken can be beneficial. High consumption of red meat has been linked to inflammation and other health risks, while chlorinated chicken, common in the US, may affect gut health and overall wellbeing. Opting for lean protein sources like fish, eggs, legumes, or plant-based alternatives can support better long-term health and help manage Parkinson’s symptoms more effectively.

Balancing Protein: Timing Matters for Parkinson’s

Another crucial part of managing diet in Parkinson’s is balancing protein intake throughout the day. This is because dietary protein can interfere with the absorption of levodopa, the main medication used to manage Parkinson’s symptoms. Both protein and levodopa use the same transport system in the gut and across the blood–brain barrier, so when they compete, less medication reaches the brain. The result can be more “off” periods, slower symptom control, or fluctuations in movement.

To reduce this effect, many people with Parkinson’s find it helpful to follow what’s known as a protein redistribution diet. This simply means keeping protein intake low earlier in the day—ideally under about 10 grams for breakfast and lunch—then eating the majority of daily protein at dinner. Doing so allows levodopa to work more effectively during the hours when most people are active, while still ensuring enough protein is consumed later to support muscle strength and overall health.

Practical examples include having porridge made with water or plant milk in the morning instead of cow’s milk, choosing fruit, toast, or salads with light dressing for lunch, and saving higher-protein foods like fish, eggs, beans, lentils, tofu, or meat for the evening meal. It’s not a one-size-fits-all approach, but when done under guidance from a dietitian familiar with Parkinson’s, it can help stabilise medication response and improve daily functioning without compromising nutrition.

The Gut–Brain Connection: Feeding Your Second Brain

Gut health plays a surprisingly powerful role in Parkinson’s. Researchers now understand that the gut and brain communicate constantly through what’s called the gut–brain axis, a two-way system linking the digestive tract, immune system, and nervous system. In fact, some scientists believe that Parkinson’s may begin in the gut years before motor symptoms appear, as misfolded alpha-synuclein proteins seem to start forming in the intestinal nerves and then travel to the brain through the vagus nerve. This makes maintaining a healthy gut not only beneficial for digestion but potentially important for slowing or easing Parkinson’s symptoms.

A balanced gut microbiome—meaning the right mix of good bacteria—helps reduce inflammation, supports better absorption of nutrients and medications, and can even influence mood and energy levels. People with Parkinson’s often experience constipation and slower gut movement, which can interfere with medication timing and comfort, so diet plays a key role here. To nurture gut health, it’s helpful to eat plenty of fibre-rich foods such as whole grains, oats, vegetables, fruit, beans, and lentils. Fermented foods like live yoghurt, kefir, sauerkraut, kimchi, and miso can also help by introducing beneficial bacteria.

Staying well hydrated and reducing ultra-processed and sugary foods further supports gut balance, while limiting red meat and dairy can ease bloating or sluggish digestion in some people. The Mediterranean-style diet naturally aligns with these principles, as it’s rich in fibre, antioxidants, and healthy fats, all of which promote a thriving microbiome. Together, these habits help keep the gut moving, enhance medication effectiveness, and may even support brain resilience over time.

Quick Energy Boosts for “Off” Moments

When people with Parkinson’s feel themselves approaching an “off” period, a small, quick-acting snack that boosts blood sugar can help give an energy lift and improve alertness. Think a piece of fruit, a small handful of dried fruit, a few crackers, or a bit of honey. The goal is to provide a gentle, fast glucose boost to help the brain and muscles function better during those tricky moments, without overloading on sugar. Timing and portion are key – just enough to feel the benefit and avoid blood sugar spikes.

Small Steps, Big Difference

Eating well with Parkinson’s doesn’t require perfection. What matters most is consistency and pattern. Replacing processed food with fresh ingredients, swapping butter for olive oil, or choosing nuts over crisps can all add up to long-term benefits. A colourful, varied diet supports better energy, mood, digestion, and possibly slower symptom progression.

It’s also worth remembering that food is deeply personal. Some people find that certain foods worsen bloating, fatigue, or medication absorption. Keeping a food and symptom diary can help identify triggers and fine-tune eating habits.

Diet alone can’t cure Parkinson’s, but it can shape how people live with it. A diet based on whole, plant-rich, anti-inflammatory foods—like those in the Mediterranean or MIND diets—appears to protect the brain, stabilize energy, and improve quality of life.

Avoiding dairy and ultra-processed foods, eating plenty of fresh produce, and considering gentle fasting routines can all make a meaningful difference. Even small improvements in nutrition can translate into better movement, mood, and overall wellbeing.

Food is more than fuel—it’s daily medicine. In Parkinson’s, where so much feels beyond control, what you eat is something you can control, one meal at a time.

Attitude is Everything - Strategies for Success by Karen Patterson

Fri, 31 Oct 2025 17:24:38 GMT

What an unforgettable day at the Parkinson Association of Northern California (PANC) Conference 2025! Over 1,000 attendees—patients, care partners, and professionals—came together to learn, connect, and grow under the inspiring theme:

From powerful keynotes to real, raw discussions, the event showcased the strength of the Parkinson’s community. Highlights included:

Kat Hill, co-author of Being Well with Chronic Illness, shared her heartfelt journey from midwifery to advocacy—showing us what it means to truly thrive with Parkinson’s.

Jimmy Choi, athlete and social media inspiration, reminded us that change is possible. His story helped fuel my own transformation—and meeting him in person was a full-circle moment I’ll never forget.

A compelling conversation with Ryan Reynolds, Dr. Suketu Khandhar, and Jimmy Choi brought attention to a too-often-ignored symptom: hallucinations in Parkinson’s. These conversations are vital.

The power of storytelling echoed throughout the day—and as someone working with Robert Cochrane PhD Founder of Yes, And...eXercise!, this message hit home. We help people with Parkinson’s reclaim their voices, build confidence, and find their own Success Stories through laughter, movement, and resilience.

While clinical insights and exercise sessions (shout-out to Dance for Parkinson’s and Ignite Neuro Fitness) kept us energized, I’d love to see more focus on the psychosocial side of Parkinson’s—issues like stigma, apathy, and isolation. Our Cinema Therapy classes go beyond support—they spark transformation.

A thoughtful Q&A with expert neurologists gave attendees a rare chance to get real answers, and the day closed with moving words from Harry Starkey, PANC Board President, who reminded us all: showing up matters.

We left feeling seen, supported, and inspired. Can’t wait for what’s next. #PANC2025 #ParkinsonsAwareness #YesAndExercise #SuccessStories #AttitudeIsEverything

Caregivers notice their loved one's PD Diagnosis by Sharon's son, George Ackerman

Tue, 07 Oct 2025 16:05:39 GMT

Being diagnosed with Parkinson’s Disease is an unforgettable moment for that individual, but also for their family. A caregiver may also go through various stages of shock, curiosity, fear, and uncertainty about the unknown. The future is truly unknown for themselves and, even more importantly, their loved one, who now faces a new challenge due to PD.

My mother had PD for 15 years. For the first seven years, she did not share much with us, likely because she felt she didn’t want to burden the family (which would never have been the case), or she may not have understood the disease as we relied on many medical professionals who also did not know what the future would bring. When I became her caregiver for the final 4 years of her life, it was full of many emotions. I cared for my mother, supported her, and tried each day to find some resolution until we hoped a cure would have been found during her lifetime.

I help her hand through the good, bad, and more challenging times. I felt although I did not have a PD diagnosis, through her, I went through every symptom, but the emotional toll was the toughest. I also felt alone as a caregiver, and she felt alone, never meeting anyone else with PD or realizing what a beautiful support and community we have today throughout the world. No one is alone, and I wish I had known that then. The most challenging part was trying to understand why it progressed so quickly in the last four years, as she was only 69 when she passed. Even today, I still am unsure what happened and why.

Feelings, grief, and advocating today are part of my life. We must all be a family in this fight for a cure! Some things I wish I had known then were the amazing support, the importance of exercise and diet, and how critical it is to talk and advocate for yourself and others.  Out of the darkness and loss of my best friend and mother comes a light that shines today in her memory through everyone I meet. We keep her memory alive and continue to fight for all those battling PD today and their families. I will fight by your side until the cure is at all our doorsteps. Count on that!

Less Toxin, More Control: A YOPD guide you can actually use by Beatrice Zatorska, Founder and CEO of PD Buddy App

Tue, 07 Oct 2025 15:49:38 GMT

We already know the score. Certain pesticides and solvents raise the risk of Parkinson’s. That theme runs through years of research and is laid out for a wide audience in the hugely popular book The Parkinson’s Plan. But if you already live with young-onset Parkinson’s, the more useful question is different. What can you do now to dial down everyday exposures that may make symptoms harder to manage or chip away at long-term health.

You do not need to bubble wrap your life. You can tilt the odds. Start with the air. Most exposure happens at home and on the way to work. Traffic fumes irritate airways and can nudge fatigue, sleep, and thinking in the wrong direction. Pick side streets when you walk, cycle, or run, and hit the recirculate button in the car when you are nose-to-tail. Gas stoves release nitrogen dioxide and fine particles, so turn on a vent that actually pipes outdoors and crack a window. If you ever remodel, induction is kinder on indoor air. Scented candles, plug-in fresheners, and incense smell nice, but add a fog of chemicals your lungs never asked for. Fresh air beats fragrance. Dust is a chemical sponge, so a weekly sweep with a HEPA vacuum and a damp cloth does more good than any fancy spray. If wildfires or city smog are part of your life, a room air cleaner with a real HEPA filter and a slab of activated carbon is a solid buy.

Water next. US tap water is generally safe, but aging pipes and new contaminants still crop up. Check your annual water quality report, and if you are on a well, test it. If you want a filter, choose one that is certified to remove the things you care about, such as lead or PFAS. A pitcher makes water taste nicer, but many do not do much more than that. Under-sink or on-tap systems with proper certification are the grown-up option.

Food is where worry and joy meet. Keep it simple and steer toward whole ingredients you recognize. Cook a bit more, unwrap a bit less. Wash fruit and veg under running water and give firm produce a brief bicarb soak. If you want to go organic but need to watch the budget, prioritize the produce that tends to carry higher residues and buy the rest conventional. Trim excess fat from meat because fat is where fat-soluble pollutants like to hide. Choose fish that sit low on the mercury ladder, such as salmon, sardines, and trout, and keep swordfish or big tuna for occasional treats. Packaging matters too. Store leftovers in glass or stainless steel, avoid very hot food in soft plastic, and try not to microwave plastic tubs. A US note while we are in the kitchen. You may have heard about “chlorinated chicken.” American poultry processors can use antimicrobial rinses such as chlorine or peracetic acid. If that puts you off, look for producers that spell out their process or choose certified organic poultry that avoids those rinses.

Household products deserve a quiet rethink. Most cleaning can be done with warm water, a little dish soap, bicarb for scouring, and white vinegar for glass and limescale. Do not mix vinegar with bleach. If a product turns your bathroom into a perfume shop, it is filling your air with volatile chemicals. Choose fragrance-free when you can. If your non-stick pan is shedding, it is time to retire it and reach for stainless steel, cast iron or a good ceramic coat. For food storage, glass and steel beat plastic every day of the week.

Gardens and lawns are where good intentions meet big labels. You do not need a perfect lawn. You do need a safer plan. Block entry points for pests, store food well, and use traps before sprays. If you must spray, read the label every single time, wear gloves, and avoid drift. Avoid paraquat full stop. In the flower beds, mulch early, pull weeds before they own the place, and spot treat rather than misting the whole zip code.

Work and hobbies matter because young onset often means you are still on the job and still hands-on at home. If you work with solvents, fuels, degreasers, paints or fine dust, ask for the Safety Data Sheet and talk to your employer about controls. You have a right to a safe workplace. Ventilate well when you paint or glue at home. Choose low VOC paints and adhesives. Wear gloves for solvents and wash up before you eat. Metalwork, pottery glazes, and resin casting are great hobbies, but they deserve masks, local exhaust, and common sense.

All of this can feel like a lot. The aim is not fear. It is a few steady swaps that lower the background noise of chemicals you do not need. Parkinson's can make you feel that control has slipped away. Environmental choices give some of that control back. You will not remove every exposure. You will lower the load, and that is worth doing.

What Cognitive Decline Means to Me

Thu, 11 Sep 2025 14:12:07 GMT

by Karen Patterson

I can not remember, I can not recall

So many names, I can’t remember at all

Like sand slipping through my fingers

While other memories tend to linger

When I wish to bring back facts

Stress triggers my mind to pull back

Making it so I can’t remember at all

Through mental cracks names do fall

Be it the names of people, places, books, or movies — I have the hardest time remembering them. I’m not sure if it’s a byproduct of Parkinson’s disease, aging, or something else. It’s been an ongoing issue that seems to get worse as I get older.

Stress and trauma make it even harder. I’ll be going about my life, minding my own business, happily working on one project — or ten. Then, if a particularly stressful event or piece of news comes my way, or even just an unexpected circumstance rattles my nerves, whatever I was thinking or doing before is gone. Poof! Erased completely, until I’ve had time to process the new information.

For years, I’ve referred to this as the “three-hour to three-day delay” in my thought process.

Dosage anxiety times are the hardest for me to stay focused The period of about an hour before to an hour after I take my carbidopa/levodopa. Too often, this is also when I have the most difficulty processing and retaining information. If I’m stressed out, it’s even worse. Even a well-planned joke can fly right over my head. The solution or correct response to a situation often doesn’t come to me until three hours — or even three days — later. A little too late for jokes to land or for insights to make their mark. I end up chuckling alone in frustration for missing the boat.

Helping Cognitive Decline

The lessons I’ve learned in Jam for Joy and the Work and Wellness improvisation classes have helped my cognitive decline immensely. I don’t miss nearly as much. And the life lessons I’ve gained in Robert Cochrane’s Cinema Therapy classes have helped me see these off-moments as learning opportunities, rather than failures.

Still, there are times when I’ve found myself in those treasured classes too close to pill time, caught in a cognitive fog — struggling to keep up with even the simplest instructions or games. It happens if I have to take a pill in the middle of class. I try not to, but as we all know, our brains need that daily dose of dopamine. And unfortunately, our symptoms don’t care whether it’s a convenient time or not.

There are No Wrong Answers

That’s why it’s so great that, within these classes, there are no wrong answers. We help each other and play through whatever challenges we’re facing in the moment.

As we age, we are all susceptible to some form of cognitive decline. It’s a scary, sad truth we must all face and learn to navigate. There’s no quick fix to prevent it. Keeping our minds active and engaged — along with proper diet and exercise — definitely helps. But still, we must be prepared. Yes, and we need to watch out for one another. It amplifies the importance of having a supportive team — people who are ready to catch us when our minds start to slip.

Regarding my own cognitive decline, I have doctors in two different states who are amazed by how much my involvement in Cinema Therapy has improved my symptoms — especially my memory and ability to think my way through stress.

Make no mistake, I still struggle. Sometimes I can’t remember the simplest things — like which direction to turn the shower knob for hot or cold water. But overall, my thinking has improved so much that my neurologist and I recently discussed the possibility of reducing my medication.

Yes, and

Yes, and — those two magic words — help me roll with the brain fog and even laugh through it. They teach me how to celebrate failing big. No matter how many times I flip the wrong light switch or can't find something hiding in plain sight, I remind myself: it’s all part of getting older. Just like the gray hair, it happens to all of us — with or without Parkinson’s.

Keeping Your Brain on Its Toes: Cognitive Wellness and Parkinson’s

Thu, 11 Sep 2025 13:57:22 GMT

by Beatrice Zatorska, Founder and CEO of PD Buddy App

When people talk about Parkinson’s, the focus often falls on movement. The tremors, the shuffles, the stiffness. But the brain, marvelous machine that it is, has more to do than just keep you walking in a straight line. Memory, problem-solving, concentration, quick thinking, decision-making – all these live upstairs in the mental control room. And like muscles, they need training if you want them to stay strong.

There’s good news here. Research suggests that keeping the brain busy is one of the best ways to fight off cognitive decline. Think of it like this: your neurons love a challenge. When you solve puzzles, when you learn something new, or when you dive into a tricky crossword, you’re actually building stronger connections in the brain. Scientists call this “cognitive reserve,” which is basically your brain’s back-up plan. The more reserve you build, the more resilient your mind becomes against the wear and tear of conditions like Parkinson’s.

So what does this look like in real life?

It doesn’t mean enrolling in a PhD in astrophysics, unless that happens to be your thing. It’s about keeping your brain active in ways that are fun, regular, and just a little bit demanding. Studies show that people who stay mentally and socially active often keep their thinking skills sharper for longer. There’s even evidence that those who continue working, especially in jobs that require problem-solving or learning new skills, tend to maintain better cognitive health than those who stop. It turns out your boss may be doing your brain a favour, whether you like it or not.

Mental Exercise is Key

If you want to give your neurons a proper workout, there are endless options. Old school is still gold: crosswords, Sudoku, logic puzzles, and brain teasers all keep your mental gears turning. If you prefer something more digital, apps like Lumosity, Peak, and Elevate offer games designed to sharpen memory, speed, and attention. These tools don’t replace real-life activities, but they can be a handy way to sneak in ten or fifteen minutes of brain exercise between the morning coffee and the daily scroll. Think of it as a quick gym session for your mind.

How much is enough?

Scientists don’t prescribe a rigid formula, but the general idea is “little and often.” Ten to twenty minutes a day of focused cognitive activity can be surprisingly powerful. It’s like brushing your teeth. You wouldn’t skip it for a week and then try to make up for it all in one go. The brain prefers regular stimulation. Pair that with things like reading, learning a new skill, or even taking up a musical instrument, and you’re giving your grey matter a gourmet buffet of challenges.

And let’s not forget the lifestyle extras. Physical exercise boosts blood flow to the brain and releases chemicals that support memory and mood. A decent diet full of colourful fruit, vegetables, omega-3s, and whole grains fuels the brain’s machinery. Some people swear by supplements such as omega-3, vitamin D, and CoQ10, though the evidence is mixed and you’ll want to have a word with your doctor before adding anything new to your regime. Sleep is another underrated hero: it’s during deep rest that your brain clears out toxins and files away memories. Cut corners on sleep and you’re robbing your mind of vital maintenance time.

Social life counts too.

Chatting with friends, debating the news, or laughing at bad jokes all push your brain into action. Human connection demands quick thinking, empathy, memory recall, and language all at once. In other words, a dinner with mates can be just as valuable to your cognitive health as half an hour of Sudoku.

Cognitive wellness isn’t about being a genius. It’s about giving your brain the conditions it needs to stay lively, alert, and adaptable.

Parkinson’s may try to slow things down, but you have tools at your disposal to keep your mind moving forward. So set yourself a challenge today. Pick up that crossword, download a brain game app, learn a few words in Italian, or finally tackle that piano in the corner. Your brain will thank you – and who knows, you might even surprise yourself.

What Does Parkinson’s Actually Cost You? A frank look at the financial toll of living with Young Onset PD by Beatrice Zatorska, Founder and CEO of PD Buddy App

Thu, 07 Aug 2025 18:48:18 GMT

If you’re living with Parkinson’s, especially if you were diagnosed young, you’ve probably noticed something creeping into your life alongside the symptoms: a relentless, exhausting drip-feed of costs. Not just medical bills, but the hidden ones too: the therapy sessions, the missed work, the tools, the classes, the things insurance doesn’t quite cover.

No one sends you an invoice that says “This is what Parkinson’s is going to cost you this year,” but let’s not pretend it’s cheap. So let’s break the silence and talk numbers.

The medications that keep you going

At first, it seems manageable. Levodopa, your most likely starting point is available as a generic, and a month's supply might only set you back $10 to $50 with insurance. But few people stick to basic levodopa for long. Extended-release versions, which help smooth out the peaks and troughs, can cost anywhere from $200 to $600 a month. Add in dopamine agonists like pramipexole or ropinirole, which come in around $100 to $500 a month, and MAO-B inhibitors, another $100 to $300, and suddenly you're easily spending $300 to $800 every month on medication alone. That’s around $4,000 to $10,000 a year, even with a halfway decent insurance plan.

Then, of course, there are the meds for side effects: amantadine for dyskinesia, stool softeners for constipation, anti-anxiety meds, sleep aids. Parkinson’s rarely travels light.

The cost of being monitored

Living with PD means regular appointments, often every three to six months with a neurologist or movement disorder specialist. Copays for these visits might be $40 to $100 if you’re lucky. But if your specialist is out-of-network, that could easily climb to $300 or more per visit. Add in the occasional MRI or DaTscan, anywhere from $1,000 to $5,000 a pop and the annual tally for routine care can quietly land between $2,000 and $5,000, depending on how stable things are.

Even if you’re well-insured, there are always extras: lab tests to check for vitamin deficiencies, private second opinions when things don’t feel right, and unexpected follow-ups after medication changes.

Therapy: essential, utterly expensive

Let’s be honest, therapy is where a lot of your money vanishes. Physical therapy, occupational therapy, speech therapy: they’re all vital for keeping you moving, functioning, and communicating well. And they’re not one-off interventions. They’re ongoing.

A single session can cost $100 to $300. Many people aim for weekly sessions across at least two disciplines, especially during flare-ups or when something shifts. Even with insurance that covers part of the cost, many people end up paying for extra sessions out of pocket. Over a year, it’s not unusual to spend $5,000 to $10,000 just to keep your body from betraying you faster than it needs to.

The worst part? You often don’t know how many sessions insurance will cover until you hit the limit.

Therapy for your mind, not a luxury

Depression, anxiety, and executive dysfunction aren’t fringe issues with Parkinson’s. They’re center stage. Regular mental health support is as critical as any medication. But access is patchy, and good therapists aren’t cheap.

Counselling or cognitive behavioral therapy typically costs $150 to $250 per session. If you're seeing someone even twice a month, that's $3,600 to $6,000 per year. And if you’re paying out of pocket, because your insurance doesn’t consider mental health “essential” enough? Well, welcome to the club.

You might turn to a coach instead, a health or life coach with Parkinson’s expertise, which might come in slightly cheaper at $75 to $150 per session. But it's still a real line item in your budget.

The price of staying strong

Everyone tells you to exercise like your life depends on it because, frankly, it does. Regular physical activity is the only intervention proven to slow progression. But staying active doesn’t come free.

Parkinson’s specific classes like Rock Steady Boxing or neurophysiotherapy can cost $100 to $200 per month. A personal trainer who understands Parkinson’s? Closer to $80 to $200 an hour. Add in gym memberships, yoga classes, tai chi, or specialist dance classes, and you could be looking at $1,500 to $3,000 a year, even if you’re thrifty.

There’s also equipment to think about: free weights, resistance bands, yoga mats, or even balance aids. All of it adds up.

Devices, tools, and smart solutions

As symptoms evolve, many people turn to tools to make life smoother. These include walking aids, rollators, weighted utensils, adapted clothing, speech amplifiers, or phone apps and wearables to monitor symptoms.

An ergonomic chair or standing desk might run you $400. A smartwatch synced with your symptom tracker could cost another $250. And that’s before replacing any of it when it wears out.

You might not be buying all of this at once, but over a year, you’ll easily spend $500 to $2,000 just adapting your environment to match your needs.

The invisible whopper: lost income

This is the big one. The unspoken one. The one that doesn’t show up on any medical bill but hits the hardest.

Many people with Parkinson’s diagnosed in their 30s or 40s try to keep working. Some succeed. But often that means scaling back hours, avoiding certain roles, or accepting jobs that are easier physically but pay less. Others are eventually forced to stop altogether.

Research suggests that people with Parkinson’s lose an average of $25,000 a year in income. And that’s not including the retirement contributions they’re no longer making, the employer-provided insurance they’ve lost, or the career progression that simply vanishes.

If you stopped working 10 years earlier than planned, that could mean a quarter of a million dollars or more in lost earnings. And that loss affects not just your bank account, but your independence, identity, and long-term stability.

Adding it all up

So what does Parkinson’s really cost you, year after year?

If you’re managing symptoms with standard care, paying for therapy out of pocket, attending classes, seeing specialists, adapting your home, getting mental health support, and replacing lost wages with disability income (if you’re lucky enough to qualify), you could easily be looking at a total personal cost of $20,000 to $30,000 every single year.

And that’s a conservative estimate.

No one ever tells you that when you're diagnosed. But it’s the truth many people are quietly living with.

What can you do about it?

There’s no magic fix, but there are smart moves. Some people start planning early and exploring disability benefits before symptoms become obvious at work. Others find creative ways to stay in the workforce longer, like going remote, changing roles, or finding employers who are willing to be flexible.

If insurance denies something, appeal it again and again if needed. Many people succeed on the second or third try. Nonprofits like HealthWell Foundation, PAN Foundation, Parkinson’s Foundation, PMD Alliance, and Michael J. Fox Foundation sometimes offer grants or stipends to help with therapy costs or specialist access. And don't underestimate the power of local community groups, they’re often the first to know which resources are worth the effort.

You won’t be able to eliminate the financial cost of Parkinson’s, but you can navigate it better, and sometimes lighten the load through good information, strong support, and sheer persistence.

REM Sleep Behavior Disorder and Parkinson's Disease: What You Should Know by Asli Beyza GUL

Thu, 07 Aug 2025 16:05:04 GMT

Sleep plays a vital role in our health, and for people with Parkinson’s disease, it becomes even more critical. One lesser-known, but very important, condition linked to both sleep and Parkinson’s is REM Sleep Behavior Disorder, or RBD. That’s why many neurologists routinely ask about sleep—it can be the window into early changes in the brain.

What Exactly Is REM Sleep Behavior Disorder?

Let’s start with the basics. REM (Rapid Eye Movement) is the sleep stage where dreaming occurs. During this phase, the brain typically sends signals to paralyze the muscles, stopping you from physically acting out your dreams.

But in REM Sleep Behavior Disorder, that protective mechanism fails. Instead of lying still, individuals with RBD may move, speak, shout, or even leap out of bed while dreaming—often reacting to vivid or action-filled dreams. This can be startling or even dangerous.

Common signs of RBD include:

• Sudden movements such as punching, kicking, or jumping from bed
• Vocal sounds like shouting, talking, or crying out
• A lack of awareness of these behaviors, making input from a bed partner especially helpful

RBD can be idiopathic (no known cause) or secondary to other factors like medications. For example, antidepressants such as mirtazapine have been shown to trigger RBD in some cases (Onofrj M, 2003).

The Link Between RBD and Parkinson’s Disease

Idiopathic RBD isn’t just a sleep disorder—it can be an early warning sign of neurological conditions. One large study found that 81% of elderly males with idiopathic RBD eventually developed Parkinson’s or related syndromes, with motor symptoms appearing on average 10 years after the initial RBD diagnosis (Jin H et al., 2017).

This makes RBD one of the most powerful early predictors of Parkinson’s, well before tremors or stiffness begin.

How Is RBD Diagnosed?

Diagnosis begins with a detailed history—often including your bed partner’s observations. If your doctor suspects RBD, they may refer you for a polysomnography (sleep study), which monitors your brain waves, muscle activity, and eye movements overnight. Some centers even record video during the study to capture dream-enactment behaviors. While usually done in a sleep clinic, some institutions may offer home-based testing.

What Are the Treatment Options?

Treatment depends on the underlying cause. If medications like mirtazapine or certain antidepressants are suspected triggers, your doctor may suggest changing them first.

When medical treatment is necessary, clonazepam and melatonin are commonly prescribed first-line options (Jiménez-Jiménez FJ, 2021). These medications help reduce the frequency and severity of dream-enactment behaviors. However, they must be used with care, especially in older adults or those with memory or balance issues.

Safety modifications are also essential:

• Lowering the bed height
• Removing sharp or hard objects from the room
• Placing cushions around the bed
• In some cases, sleeping in separate beds until symptoms are controlled

These practical changes can help prevent injury to both the patient and their partner.

What Should You Do if You Suspect RBD?

If you or someone close to you notices unusual movements during sleep, bring it up with your GP or neurologist. While RBD might sound straightforward, only a sleep specialist can confirm the diagnosis and distinguish it from other sleep disorders.

If diagnosed, it may also be worthwhile to see a movement disorder neurologist—a specialist who can monitor for early signs of Parkinson’s and guide future steps, including regular follow-ups.

While acting out dreams may seem like just an odd quirk of sleep, RBD can be a powerful clue into brain health. For some, it’s the first sign that something deeper may be going on. With early recognition and management, individuals can stay safer at night—and potentially catch neurological changes early, long before other symptoms appear.

References:

• Mayo Clinic. (2018). REM Sleep Behavior Disorder.
• Jin H, Zhang JR, Shen Y, Liu CF. (2017). Clinical significance of REM sleep behavior disorders and other non-motor symptoms of parkinsonism. Neurosci Bull, 33(5):576–584. doi: 10.1007/s12264-017-0164-8.
• Jiménez-Jiménez FJ, Alonso-Navarro H, García-Martín E, Agúndez JAG. (2021). Current Treatment Options for REM Sleep Behaviour Disorder. J Pers Med, 11(11):1204. doi: 10.3390/jpm11111204.
• Onofrj M, Luciano AL, Thomas A, et al. (2003). Mirtazapine induces REM sleep behavior disorder in parkinsonism. Neurology, 60(1):113-5. doi: 10.1212/01.wnl.0000042084.03066.c0.
• https://www.michaeljfox.org/news/ask-md-acting-out-dreams-and-parkinsons-disease

The Emotional Toll of a loved one's Diagnosis by George Ackerman, Sharon's Son

Mon, 07 Jul 2025 18:51:34 GMT

The emotional toll as a caregiver was devastating. I went through a variety of emotions. I was uncertain of what the future would bring for my mother, who was diagnosed with Parkinson’s Disease, and at the same time, I was unsure of my future in life as a caregiver or a life without my best friend and mother.

My mother had PD for 15 years, but I was not aware until the seventh year when her symptoms became progressive and more difficult for her to hide from our family. I feel she may have tried to hide her diagnosis because she did not want to burden us which she would never have been the case. Or she may not have realized or been advised as to the progression, diagnoses or reality of the disease because even medical professionals seemed unsure as to the future due to her diagnosis.

Even today, as an advocate for a PD cure, I find myself still having a difficult time reliving memories of my mother’s struggle. The final four years as her caregiver were the toughest for me as well. Feelings of anxiety, sadness, stress, depression, and hopelessness crept through my life, but I attempted to hide them from my mother, who I felt I needed only to show care and support during her struggles. I often say I would not be the man I am today without my mother’s sacrifices. She was a teacher with a master’s degree and gave up her career to raise my brother and me.

I wouldn’t have accomplished most of my academic success and professional acknowledgments without having my mother cheer by my side, from the good times to the tougher ones. She was always right by my side, encouraging me 24/7. She was and always will be an inspiration, and at times, she sacrificed her health but did not share her PD diagnosis with me until several years later because she didn’t want to burden the family. Many days, I wish she had, and it makes me wonder if, at that time, I was unaware that something more could have been done to slow the progression.

Every journey is unique and direct, but everyone inspires me daily to fight for a cure. Advocating helps me cope, and my mother lives on through everyone I meet; she shares our journey and allows me to never forget how important she was in this world and to me forever. My journey continues today, from being a caregiver to an advocate. I am still at a loss and in shock with feelings like what happened, why, and what, if anything, I could have done differently as PD progressed so quickly for my mother… we still do not know why.

Out of my darkness and loss, though, comes some positives, like meeting so many today who are my heroes and warriors battling PD but who I fight side by side across the world to ensure no one is ever alone, and I never want anyone else to go through what my mother or my family has. I want nothing but a cure. Now.

No Pills, Just Power: Why Exercise is a Game Changer for Parkinson's by Beatrice Zatorska, Founder and CEO of PD Buddy App

Thu, 03 Jul 2025 16:37:04 GMT

When it comes to Parkinson’s Disease, there's no silver bullet. But there is something surprisingly powerful, proven, and entirely within reach: exercise. No fluff, no hype — just solid science and real-world results.

Exercise Isn't Just Helpful — It's Essential

If exercise could be bottled into a pill, it would be the most prescribed treatment for Parkinson’s. That’s not just poetic — researchers are finding that regular physical activity may not only slow disease progression but might even improve symptoms and enhance brain health.

Professor Bas Bloem, a leading Dutch neurologist and one of the world’s top Parkinson’s experts, says exercise should be prescribed just like medication. Why? Because brain scans show something astonishing: after six months of regular exercise, people with Parkinson’s actually regrow dopamine transporters in the brain. These are the very systems that break down in Parkinson’s.

Tangible Benefits Backed by Research

Recent studies show that exercise:

Improves balance, mobility, flexibility, and posture
Enhances mood and mental clarity
Strengthens muscles and bones
Improves cardiovascular and lung function
Reduces the risk of cognitive decline
Might slow or even reverse some neurological damage

One Yale School of Medicine study found that intensive aerobic exercise may reverse neurodegeneration in Parkinson’s — something previously thought impossible. And there are over 130,000 articles on the topic and 137 active clinical trials exploring exercise and PD right now. This isn’t a fad — it’s a scientific movement.

What Kind of Exercise Works Best?

The best exercise is the one you’ll actually do. Research and patient experience suggest a mix of activities is ideal:

Aerobic/Cardio (e.g. walking, cycling, cross-training): gets your heart pumping and improves stamina.
Strength Training (e.g. weights or resistance bands): supports posture and everyday movement.
Flexibility & Balance (e.g. yoga, Pilates, Tai Chi): enhances stability and helps prevent falls.
Neuromotor Skills (e.g. dance, boxing, agility drills): boosts coordination and mental sharpness.
Voice & Hand Exercises: often overlooked, but vital for communication and fine motor control.

Even “snack-sized” movement counts. Can't do an hour? Take the stairs. Do ten minutes here and there. It adds up.

Real Life: Michel’s Story

Michel, a member of the No Silver Bullet 4 PD community, exercises six days a week — and it shows. Diagnosed five years ago, he now hikes, strength-trains, cycles, and stretches. He's regained his handwriting with daily hand exercises. He uses voice training to maintain speech strength. His energy and symptom control have improved dramatically — and he credits consistency and variety.

What About Intensity?

Forget heart rate monitors — many people with PD can’t rely on them. Instead, follow the “pant and chat” rule: exercise hard enough that you're breathing heavier, but not so hard you can’t hold a conversation. Sweat is your friend.

And it helps to time your workouts for when your medication is working (your “on” time). Some people even slightly adjust their meds to ensure they can exercise effectively — always check with your doctor first.

But I’m Tired. Or Scared. Or Just Not Motivated.

You’re not alone. Fatigue, apathy, time, and fear of falling are real barriers. But here’s how people are pushing through:

Use a trainer or physiotherapist — especially early on to build confidence.
Exercise with a buddy — it’s more fun and keeps you accountable.
Track your progress — apps like PD Buddy let you journal your routine, earn badges, and stay connected.
Reward yourself — Michel swears by a long bath after training.

And if you're worried about falls, try stationary cycling. Four points of contact (hands and feet) make it safer than walking.

You don’t need to be an athlete to fight back against Parkinson’s — you just need to move. Consistently. Purposefully. And with hope.

If there were a pill with the same benefits as exercise, we’d all be lining up to get it. The good news? It already exists. It’s called movement — and it’s free.

So lace up. Plug in your favorite playlist. And start today — even five minutes is better than nothing.

Getting Creative About Physical Therapy and Exercise by Karen Patterson

Thu, 03 Jul 2025 16:29:52 GMT

It’s summertime, and at long last, I’ve found a physical therapist who understands Parkinson’s disease. Another first for me. While It’s work, I accept and appreciate the challenge. The warm weather this time of year is beneficial in many ways, as is having proper guidance for the first time in nearly five years.

It’s been a lifelong journey discovering my workout routine. Using an exercise ball and different zoom videos has helped me stay active. I’m always interested in meeting new physical therapists. Each has their style or approach to various problem areas.

When I discover a new stretch or routine that works well. I do my best to remember it and add it to the long list of ‘hacks' I use in the evenings when my dopamine levels aren’t playing nicely. Evenings I spend with distorting leg cramps, twisting my tendons tighter than wrung-out dish rags. On those nights, I reflect on the day’s water intake. Yes, and my exercise ball becomes my best friend. At least until my meds kick in and allow me to sleep. Sometimes…

We all battle good and bad hours. It’s during those tough times that we have to hold on and take note of what we’re doing, especially when it comes to diet and exercise.

Kristine Meldrum’s book "How to Build a PD Exercise Cocktail Plan: A Professional's Companion Guidebook,” explains the need to find a specific routine for you. No one can do it for you. I’ll admit - I haven’t read the book yet, but I’ve seen Kristine speak in webinars and interviews with Karl Robb and Robert Cochrane. Her message is clear. Her heartfelt story about starting small and building slowly gave me hope and inspiration. Reminding me that I don’t have to be an athlete to be athletic. Yes, and disability doesn't mean giving up on setting new goals or reinventing a new exercise plan.

Yes, and it is so very human to adapt. To change and grow. This is how Joseph Campbell’s Hero’s Journey has helped me over the years more times than I can count. Through cross-country moves. Surgeries and recoveries. Skills lost and found. Homes and life plans rewound. Joe was the one who always taught me to stay open-minded and go with the flow.

The absolute most important time to go with the flow is when you’re listening to your body. You must go slow and listen to what your body is telling you. Whether or not you have a therapist's help, you must be our own best advocate by first being in tune with how our bodies react. And don’t be afraid to talk to your therapist - or change therapists if you meet one who isn’t experienced with your needs.

Without a strict diet, our medication cannot help our bodies function properly. Finding the balance is key. I am very happy to be back in physical therapy. At last, I don’t have to play the role of the solitary practitioner in charge of my own DIY physical therapy routine. Instinct and paying attention to some very talented therapists got me through, but having the right support makes all the difference.

We can’t always control what our bodies are going to do. Don’t be afraid to step outside your comfort zone and try something new. Improv creativity and play can be incorporated into every aspect of our lives. After all, that’s why we call ourselves Yes, And…eXercise!

I also want to take a moment to remember and honor Dave Parker. Sadly, he passed away before his induction date into the Baseball Hall of Fame. My heart goes out to his family.

Our plans for the Legendary Parkinson’s Pickle to create an anthology with members of the Dave Parker 39 Foundation are proceeding with our silent Auction live and running until July 28th. Please check out the list of amazing items, including a signed baseball by Dave Parker himself. A boxing ring bell signed by Muhammad Ali and the autographed guitar Michael J. Fox played in Back to The Future. Making this a must-see event for all. Check out the link here: https://www.yesandexercise.org/sandlot

Have a great summer everyone!

Traveling with Parkinson's: Our Adventures, Lessons, and a Few Science -Backed Tips b Beatrice Zatorsks, Founder and CEO of PD Buddy App

Mon, 09 Jun 2025 21:13:36 GMT

When my husband was diagnosed with Parkinson’s just over five years ago, it shifted everything. Our plans. Our priorities. Even how we see time. We realized life is now — not "one day" — and made a pact to stop waiting and start experiencing. And one of the most powerful things we’ve done since then is travel.

We’ve been all over, but we especially love Asia — for their lush nature, vibrant food, kind-hearted people, and the fact that it’s safe and surprisingly affordable. And while we travel for pleasure, we’ve come to understand that travel itself can be good medicine.

The Dopamine of Discovery — Literally

One of the major chemical players in Parkinson’s is dopamine, the feel-good neurotransmitter that helps regulate movement and motivation. As you know, in Parkinson’s, the brain gradually produces less of it.

Here’s the good news: new experiences — like those found in travel — stimulate the brain’s reward system, which releases dopamine. According to research published in Frontiers in Human Neuroscience, novel and emotionally positive experiences (such as those encountered during travel) can increase dopamine activity and enhance well-being. For us, each adventure feels like a natural dopamine boost — and we genuinely see the difference in his energy and mood.

How We Travel Now

We do things a little differently since Parkinson’s entered the picture, and planning is essential.

Half-day planning
Fatigue is a common symptom of Parkinson’s, so we only plan activities for half the day and leave the rest for rest or reflection. It’s made travelling more enjoyable and less stressful.

Avoiding crowds
Crowds can make movement harder — they increase stress and can trigger freezing. This is backed by studies from Movement Disorders Journal, which link anxiety and overstimulation with motor blocks. So, we plan visits early or pick quieter routes.

Timing medication
Crossing time zones or shifting your daily rhythm can throw off medication timing. Skipping or delaying a dose can increase symptoms — even freezing or falls. The PD Buddy app’s reminders have been vital on the road for keeping us on track.

Food and hydration

Dehydration can worsen orthostatic hypotension (a drop in blood pressure when standing), common in Parkinson’s. We prioritize water and eat light, fresh meals. Asian cuisines, rich in veggies and gut-friendly fermented foods, help him feel energized and balanced.

Climate awareness

People with Parkinson’s are often more sensitive to heat and cold. We check the weather ahead, book air-conditioned stays in hot regions, and pack cooling gear. Research from the International Parkinson and Movement Disorder Society confirms that temperature regulation is often impaired in PD — so we take it seriously.

Travel as a Teacher: What We’ve Learned from the Road

One of the most rewarding things about travel is what we learn from other cultures about managing Parkinson’s — tips we’d never find in a clinic leaflet.

In Bali, we discovered Jamu — a traditional drink made from turmeric, ginger, and tamarind. Turmeric, rich in curcumin, has anti-inflammatory properties that are being researched for neuroprotective benefits in Parkinson’s.

In China, where nearly half of the world’s Parkinson’s population lives, we explored traditional medicine. We now include acupuncture in his care — not as a cure, but as a tool to reduce fatigue and pain. Clinical reviews (such as one in Parkinson’s Disease Journal, 2017) suggest acupuncture may improve motor function and quality of life.

Mind-body practices like Tai Chi, Qigong, yoga, and meditation, which we picked up in Asia, are now regular parts of his routine. There’s solid evidence (e.g., The New England Journal of Medicine, 2012) that Tai Chi improves balance and reduces falls in people with Parkinson’s. Plus, these practices help with anxiety, stiffness, and sleep.

In Japan, we discovered some brilliant lifestyle habits that really support Parkinson’s management. The clean, balanced diet stood out — loads of fresh fish rich in omega-3s, daily miso soup packed with fermented goodness, and beautifully small portions that never leave you feeling sluggish. The focus on seasonal, fresh produce and mindful eating really made a difference. We also noticed how walking is woven into daily life, and how calm, structured routines — from bathing rituals to quiet public spaces — can help reduce stress and support better symptom control. There’s a lot we can learn from Japanese culture when it comes to living well with Parkinson’s.

One thing we’ve truly come to appreciate during our travels — especially across Southeast Asia — is the deep love and respect for nature. In Vietnam, for example, we were struck by how environmentally aware people are. There's a real concern about pollution drifting in from neighboring China, and we saw lots of grassroots efforts to protect natural spaces — from banning single-use plastics in local markets to community clean-up drives. Elsewhere in the region, we’ve been inspired by the sustainable lifestyles on some of the Indian Ocean islands. Places like Koh Yao Noi in Thailand or Nusa Penida in Indonesia are making serious moves towards eco-living — banning plastic bags, encouraging reusable containers, and promoting local food grown on the island. Many of these island communities live entirely from what nature provides — eating what grows there, catching their own fish, and preserving traditional knowledge. It’s a refreshing perspective, and one that feels especially powerful when managing a long-term condition like Parkinson’s — reminding us to slow down, live simply, and tread lightly.

Spirituality and mindset
Being in places with a slower, more mindful approach to life has been healing. We’ve learned not just to manage Parkinson’s, but to befriend the present moment — to slow down, breathe, and be.

Parkinson’s doesn’t mean travel has to stop. It just means adapting — and sometimes, that’s where the magic happens. With a bit of preparation, awareness, and curiosity, the world is still wide open.

For us, traveling is more than just a holiday. It’s therapy. It’s learning. It’s connection. And most of all, it reminds us — and hopefully you — that this life, however unpredictable, is still full of wonder.

Practical Travel Tips (Tried and Tested!)

Book accessible accommodation. Even if you don’t usually need grab bars or lifts, they’re invaluable when symptoms flare.
Inform airlines in advance. Assistance through airports can save both energy and stress.
Travel insurance matters. Make sure it covers Parkinson’s and any extras like acupuncture or medical equipment.
Pack more meds than you need. And keep them in your hand luggage, with a doctor’s note if needed.
Build in breathing space. Don’t overstuff the itinerary. Sometimes a day wandering the market beats five tourist sites.

Lack of Media Support by Dr. George Ackerman

Mon, 09 Jun 2025 19:26:09 GMT

One primary goal is awareness of a cure for Parkinson’s disease. I believe we will be closer to a cure through advocacy and awareness; however, it is not always easy. Most days, I sit and try to brainstorm ways to achieve a reach through the media.

I have written 15 letters on several occasions to media outlets such as television, including national stations and local. It is nearly impossible to gain a response and coverage in this critical area of bringing attention to PD. Is it because viewers are unaware, or is it insufficient for their ratings? I am not sure, but when I see the stories the media shares and the lack of information about Parkinson’s, it is shocking.

As one of the fastest-growing neurological disorders worldwide, you may think the coverage would be much more effective and efficient. However, that is not the case, especially for local advocates. I have attended many local walks and events to raise awareness, but the media does not exist.

We need a cure, but the key is teaching the world, and the media, celebrities, and all of us joining together can make a difference, but we are far from the needed media support. Unless a specific reporter is affected by PD through their family, responses are the noise of only crickets, which is heartbreaking. The amount of time media spends on stories that include violence and stories that do not apply to the regular everyday person or families and those affected by PD is shocking to me.

We must reach all media outlets to gain attention for this critical movement and advance toward a cure and end of PD.

NBC, ABC, CBS, Fox, and every avenue and venue need to come to the table and help save lives. Their devotion to politics and crime stories is unmatchable; imagine if they spent a few moments ensuring coverage on PD awareness, research, and so many communities touched PD would be a game changer but as of today, in my experience, the lack of care and response is draining, frustrating and shocking.

However, no matter what, we all must join hands, continue to call and write your local media from newspapers, television, and social media, and ensure we all are talking about, and pushing anyone we meet of the importance and urgency for a PD cure. Awareness through local, city and national attention would change the path and speed of a cure may be at all our doorsteps.

Crafting Love, Joy, and Healing with Art, Music, and Storytelling by Karen Patterson

Mon, 09 Jun 2025 19:15:12 GMT

Joy is a choice and a right. We all have a human need to practice it in our daily lives. Finding your niche, your groove, your thing, is how you find your bliss. The happy place where healing miracles happen.

Nature’s Rhythm Speaks to Me

I love the sights and sounds of nature. Rushing rivers mingling with birdsong in springtime, the shifting rhythm of rain and the driving force of thunder and lightning. A stir of rising winds in the distance that often signals change. The song the ocean sings as it caresses the coastline between land and sea speaks to us all. In places like these, we find healing joy that moves with the flow of the universe.

Motherhood Memories, Art and Music

I love music with every fiber of my being. Making music and singing karaoke with my kids have been some of our best times. A shared taste in music and painting along with Bob Ross videos became a tradition that connected us across generations. Memories filled with awe and delight as I watched my children's musical and artistic talents blossom and grow.

Writing Against all Odds

Over the years we learned new crafts while I lost my ability to do others, including my ability to type. For years I experienced burning pain and numbness in my hands due to nerve damage, carpal tunnel and radial tunnel issues that were never surgically corrected.

Stubbornly I kept writing poetry and scribbling research notes in scrapbooks with fat markers. Never giving up my writer's dream. Holding on to my love of that artform by the skin of my teeth.

Reclaiming Joy with Clay

While living in rural parts of the country, crafting helped me combat the loneliness of social isolation. Years previously I lost my ability to knit, make jewelry and I have terrible difficulty working the simplest clasp. I started working with clay and I experienced a healing connection. I am both shocked and amazed to discover my shaking and fumbling hands work for me more than against me.

Healing Power of Connection

Reading, writing, storytelling, and advocacy are the center of my existence while I start life anew. Yes, and all I’ve learned is setting me free from most of my social isolation. While in the past I’ve gathered much of my seasonal bliss and healing flow from gardening, my PD symptoms caused multiple falls. This spring I sow my seeds of love in my stories, each one rooted in hope. It gives me great fulfillment to connect with the PD community and share what I’ve learned.

Walk Your Own Path

How you tap into your bliss is to find what matters to you for reasons you can’t explain in words. Only in the feeling it gives you. Practice these activities and allow them to distract you from what ails you. Even if it’s only for a moment or two at a time. When you can find what brings you peace, and turn that into something you do regularly, it then becomes an exercise that makes room for cognitive healing.

Rebirth Through Improv

One of the most profound shifts in my emotional well being happened when I joined Robert Cochrane’s Jam for Joy improv program. What started as online fun and games became a powerful tool for healing. The day I learned how to “Yes, And”…life and apply it as an exercise, it set my mind free in ways traditional therapy and self help books don’t . The longer I was involved in the program, the more my symptoms improved.

Miracles Happen : Unlocking my Hands and Finding My Voice

The most miraculous improvement is the return of my ability to type. Two months into my first round of Cinema Therapy class in 2023, I transformed from having trouble highlighting people's work, into someone who can out-type a much younger version of myself. I still experience pain and off periods of time. It’s nothing like it was before. No medication changes, just finding connection and real emotional support healed me in many ways. Restoring my confidence and giving me a sense of self.

In a nutshell, by finding my bliss through Robert Cochrane’s Cinema Therapy program, I found a way to reboot my brain. It taught me how to redirect the way I deal with stress, pain and past trauma. Helping me see life for what it can be instead of feeling limited by the negative stigma of what people say we can’t be because of PD. Thanks to the magic words: Yes, And…

It’s Up to You

Find your bliss. Share your world. Connect with the PD community and above all find a way to tell your story. It doesn’t matter if you share it with an original work of art, a heartfelt song or like me, a dream come true opportunity to write a screenplay with a wonderful group of talented people. When you can take the focus off what is wrong with you, and instead focus on what is not wrong with your life, you might just find a way to open doors into your wildest dreams.

Join Our Team

Yes, and, as the newly appointed secretary for Yes,And…eXercise!, I invite everyone to check out the latest happenings at www.yesandexercise.org Highlighting our Sandlot - FIeld of Dreams and WIDS (What I Didn’t Say) developing class projects.

In celebration of Dave Parker's induction into the Baseball Hall of Fame, Yes, And…eXercise! is hosting a silent auction featuring autographed merchandise from the movie, The Sandlot to raise funds for a future Cinema Therapy class that will help members of the Dave Parker Foundation. You can learn more here: https://www.yesandexercise.org/sandlot

Or by checking out the Dave Parker foundation homepage:https://www.daveparker39foundation.com/

What would you share about your experiences with YOPN with others living with YOPD?

Wed, 28 May 2025 19:20:45 GMT

In April we asked our members, 'What would you share about your experiences with YOPN with others living with YOPD?'.

Here are some of the responses.

What would you share about your experience with YOPN with others living with YOPD?
In my early years after diagnosis, a gray cloud came over my head. However, reading books from M.J. Fox and my faith in God gave me hope. Almost immediately I started physical therapy and after reading the benefits of diet and exercise, I started a very strict diet and a exercise routine that works for me. I was diagnosed at 48. I'm now 53 and in a lot of medications, but I continue to push forward despite my frequent bad days. I preach on Sundays and work in a little co-op which I love. Every moment that I spend with those people, I try to be as jovial as I can. The Spirit of God that is in me makes it happen. I pray that one day a cure will be found and we can be released from this hard disease. Until then, we must continue to move forward. Lean on God, lean on your family, lean on your good friends. Make your days better by socializing with people. It's rejuvenating. May God be with you and heal you. Don't stop fighting!

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What would you share about your experience with YOPN with others living with YOPD?
"It is possible YOPD may be fundamentally different than PD. Most all of the research is based on men. most all medications are dosed for men.

We are sailing in uncharted waters. As I see it, having been diagnosed 22 years ago at the age of 47, there are two ends of Parkinson's. On one end, research is really important. On the other end, care is really important.
In between the two ends is where most of us exist. The research end has a lot of catching up to do but the care and doesn't even know we exist.
Hospitals and rehab centers are wholly unprepared for this new generation of Parkinson's patients. I was in rehab two years ago and was the female PD patient they had ever seen.
There is a presumption of caregiver. Not everyone has a care partner, family member or a community member dedicated to their care. Many of us are our own caregivers. When you are young and live on your own with Parkinson's disease, it's a much higher risk disease. We need to be considered and in the conversation.
When you are still relatively young, but have advancing Parkinson's disease there is no age or stage appropriate place to live with the right amount of assistance. The goals and models of assisted living facilities and senior living facilities are not congruent with the goals of Parkinson's patients who are fighting, not supporting, going downhill.
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What would you share about your experience with YOPN with others living with YOPD?
"I am a resident of India diagnosed with Parkinson in 2022. In my peer group YOPD used to be an alien term and Parkinson is considered as an old man disease and is genetic in nature.
With no knowledge about YOPD and seeing the condition of Parkinson people life had become very depressive.
I found out about YOPN through Instagram. Was delighted to find about YOPD communities webinars members insights. It totally changed the way I was looking at my life. I found hope and strength and inspiration through YOPN.
It helped me understand the difference between YOPD and PD and I could explain it to my family as well.
In fact YOPN is the platform which published my YOPD story in the blog section which helped me declaring to the people around me about my condition.
My advice to people with YOPD is that stay connected online or offline and share your stories diagnosis medications and spread awareness. Reach out and remember you are not alone."

Underserved populations and the need for more support and awareness by Dr. George Ackerman

Wed, 28 May 2025 18:45:02 GMT

The world calls for diversity, culture, and respect for all of us. We also need more awareness for some cultures and segments of the population who do not have enough attention or support for those battling Parkinson’s Disease, such as the Latin population, Black population, Gay population, minorities, and so many other underserved populations. I do not see enough attention or advocacy for some specific populations, but together, we can bring change and support.

You can bring the necessary change to shed light on this critical topic.

Some have no access in their communities to medical professionals who specialize in movement disorders. Others must travel throughout the world to get their medical provider.

The National Plan to End Parkinson’s Disease is a historic bill passed in 2024 to help raise awareness and research towards a cure. One specific goal is to also bring more attention to those who are sadly and often forgotten but need attention and assistance. You can contact your legislators to support change and get more help from those specific and diverse populations. As of today, I have not personally seen it. I have not heard about the bill implementation outcomes, but I hope it brings positive help and change.

I have tried to bring awareness to those throughout the world who need more attention through blogs, books, and reaching out and partnerships together towards a PD cure and support until it is at all our doorsteps globally,

I am often surprised by the reality that so many are usually forgotten and how badly we need to voice awareness together. Still, in some instances, reaching specific populations who may feel it is tough alone.

No one based on cultural background or lack of resources should ever be forgotten.

Before being my caregiver for my mother, who battled PD and we lost in 2020, was my career: law enforcement and the legal field. As an attorney, police officer (Rsv), and PhD in the field of criminal justice, I dedicated my life to those family members who lost a loved one due to crime such as murder. Most of my research focused on the African American population throughout the United States and their loss and reintegration back into society; the results were shocking due to the lack of support and resources for this specific population. Often, in the criminal justice system, a family loses a loved one, but the family becomes a secondary victim and is usually forgotten by the process and system. By shedding light on this topic well, needed change and awareness can only come. I do feel this correlates to the Parkinson’s community as so many underserved populations are forgotten, and we need change now.

I will continue to be a voice for everyone in this fight for a PD cure, and I hope you will join me because together, our reach and voices are much more substantial.

Passport in Hand, Parkinson's In The Bag by Asli Beyza Gul

Wed, 28 May 2025 18:36:30 GMT

Your guide to traveling confidently with Parkinson’s—together.

Summer is here, the skies are clear, and the world is waiting. Parkinson’s may be part of your journey, but it doesn’t have to be your roadblock. With smart planning and the right support, travel can still be joyful, enriching, and accessible—whether you're heading out for a weekend escape or an international adventure.

Parkinson’s should never limit your ability to explore the world. Whether you're someone living with the condition or a care partner supporting a loved one, travel can be an empowering experience. It offers new perspectives, beautiful moments, and the kind of memories worth holding onto. With the right tools and mindset, there’s no reason Parkinson’s should keep you grounded.

Here are some essential travel tips to help you and your care team make the most of every trip:

Step 1: Before You Travel

Planning ahead is your best friend when it comes to traveling with Parkinson’s. A few extra steps before your trip can go a long way in ensuring a smooth experience for both of you.

✅ Talk to your neurologist
Discuss your travel plans, especially if you're crossing time zones or traveling for an extended period. Your care team may suggest adjusting medication timing or provide useful travel tips.

✅ Gather essential medical documents
Bring a list of medications, a letter from your doctor, and documentation for devices like deep brain stimulators (DBS), if needed. Care partners should keep a copy too.

✅ Use medication reminder apps
Apple Health’s medication tracker can help maintain your medication schedule—especially across time zones.

✅ Pack smart
Keep all medications and documents in your carry-on luggage. Bring extra doses in case of delays and consider using a pill organizer. If you're a carer, double-check everything is easily accessible during the journey.

Step 2: At the Airport

Airports can feel overwhelming—but preparation goes a long way.

✅ Arrive early
Give yourself plenty of time. Arriving earlier than usual reduces stress and provides wiggle room for any unexpected delays.

✅ Let airport staff know
Inform security and airline staff about the condition. They are generally understanding and happy to offer assistance, whether with mobility needs or DBS devices.

✅ Use the Hidden Disabilities program
Many airports offer lanyards or badges for travelers with non-visible conditions like Parkinson’s. Wearing a sunflower lanyard helps staff quietly recognize that extra support may be needed.

✅ Request for wheelchair assistance if needed
Some airports are huge, ranging from hundreds of gates. Even if you don’t always use a wheelchair, it can ease long airport walks and reduce fatigue.

✅ Stay hydrated and dress comfortably
Long waits or flights can be tiring. Wear loose, comfortable clothes and supportive shoes. Bring a refillable water bottle and stay hydrated throughout the journey.

✈️ Step 3: On the Plane

Now that you're onboard, here’s how to keep things as smooth and comfortable as possible.

✅ Inform the cabin crew
Let a flight attendant know about the condition (and any mobility aids or needs). They can assist with storage, offer timely help, and keep an eye out during the flight.

✅ Set reminders for medications
Keep medication timing consistent by setting alarms on your phone or smartwatch. It’s easy to lose track in the air, especially on long flights.

✅ Take movement breaks
If it’s safe and possible, walk up and down the aisle or do gentle in-seat stretches to avoid stiffness and improve circulation.

✅ Pack comfort items
A neck pillow, snacks, compression socks, and noise-canceling headphones can make the flight more pleasant for both the person with Parkinson’s and their companion.

️ Step 4: On Your Vacation

Now it’s time to relax and enjoy.

✅ Choose accessible accommodations
Look for features like elevators, grab bars, walk-in showers, or ground-floor rooms. Confirm accessibility ahead of time with your hotel or host.

✅ Build in rest time
Don’t overpack the schedule. Breaks are essential, not optional. Fatigue can affect both travelers—plan accordingly.

✅ Be flexible and present
Parkinson’s is part of the trip, but it doesn’t define it. Savor the small joys, explore new places, and lean on each other when needed.

Wherever you go, Parkinson’s comes with you—but so does your strength, adaptability, and spirit. Whether you're traveling solo or side-by-side with someone you love, remember: the world is still yours to explore.

Travel boldly. You’ve got this—together.

Navigating Mental Wellness in Parkinson’s Disease: The Science Behind Emotional Resilience by Beatrice Zatorska, Founder and CEO of PD Buddy App

Mon, 05 May 2025 16:17:43 GMT

Living with Parkinson’s disease is a journey fraught with challenges that often extend beyond the physical. While the motor symptoms are well-documented, the mental health implications are equally significant and deserve urgent attention. For people with Parkinson’s, understanding the psychological landscape and actively fostering mental wellness is vital for enhancing quality of life.

The Psychological Toll of Parkinson’s

The reality is stark: nearly half of people with Parkinson’s will face mental health issues, including anxiety and depression. The emotional burden can be heavy, exacerbated by the uncertainties that accompany a chronic illness. The decline in dopamine not only disrupts movement but also affects mood regulation, leading to feelings of hopelessness and distress.

The social and emotional implications can feel isolating. Changes in lifestyle and the loss of independence can stir anxiety and depression, making it imperative to address these concerns head-on. We must shift the narrative: mental wellness is not secondary; it is a fundamental aspect of managing Parkinson’s.

Seeking Mental Health Support

Engaging with mental health professionals is paramount. Cognitive-behavioural therapy (CBT) has proven effective in alleviating depressive symptoms and anxiety in people with Parkinson’s. A meta-analysis found that CBT significantly reduced depression and anxiety levels in this population.

Peer support groups also hold immense value. Sharing experiences with others who understand the journey can alleviate feelings of isolation, creating a sense of community that fosters emotional resilience. Research indicates that participation in support groups can lead to improved mental health outcomes and a greater sense of belonging.

Strategies for Enhancing Mental Wellness

1. Stay Active: Regular physical activity is a powerful antidote to mental health struggles. Exercise not only combats physical symptoms but also releases endorphins—nature’s mood lifters. A systematic review highlighted that physical exercise significantly improves mood and reduces anxiety and depression in people with Parkinson’s. Activities like walking, swimming, or even gentle yoga can significantly boost mood and help manage anxiety.

2. Mindfulness Matters: Mindfulness and relaxation techniques can be game-changers for emotional well-being. Practices such as meditation and deep-breathing exercises promote a sense of calm and help manage stress. A study found that mindfulness-based interventions led to significant reductions in anxiety and depression among people with Parkinson’s.

3. Nutrition for the Mind: A balanced diet is more than just physical nourishment; it’s a cornerstone of mental health. Consuming a variety of fruits, vegetables, and omega-3-rich foods can support cognitive function and enhance mood. Research indicates that a Mediterranean diet, rich in antioxidants and healthy fats, is linked to better mental health outcomes. Staying hydrated is equally vital; even mild dehydration can affect mental clarity and emotional stability.

4. Cultivating Connections: Maintaining social ties is essential for emotional health. Engaging with friends, family, or support groups can provide a crucial lifeline, reducing feelings of loneliness. Research shows that social engagement is associated with lower rates of depression and improved quality of life in people with Parkinson’s. Participating in community activities or hobbies fosters a sense of belonging and purpose, both of which are vital for mental wellness.

Embracing a Holistic Approach

For people living with Parkinson’s disease, prioritizing mental wellness is not merely beneficial—it’s essential. By recognizing the interconnectedness of mental and physical health, patients can adopt a more holistic approach to their care.

Incorporating effective strategies—such as psychological support, physical activity, mindfulness, proper nutrition, and social engagement—can lead to greater resilience and a richer quality of life. It’s time to champion mental wellness in the conversation around Parkinson’s, paving the way for a more compassionate and comprehensive approach to living well with this condition. By embracing these steps, people with Parkinson’s can cultivate hope and purpose, navigating the challenges of Parkinson’s with strength and resilience.

References

- Aarsland, D., Brønnick, K., Frank, A., & Klosinski, C. (2011). Neuropsychiatric symptoms in Parkinson’s disease. *Movement Disorders*, 26(3), 353-359.

- Cramer, H., Lauche, R., Langhorst, J., & Dobos, G. (2015). Mindfulness-based stress reduction for people with Parkinson’s disease: A randomized controlled trial. *Parkinsonism & Related Disorders*, 21(11), 1138-1144.

- Ebersbach, G., Giesinger, I., & Schulte, M. (2010). The role of physical exercise in the treatment of Parkinson’s disease. *Movement Disorders*, 25(12), 1791-1799.

- Kätsyri, J., Kallio, M., & Rantakokko, P. (2020). Cognitive-behavioral therapy for depression and anxiety in Parkinson’s disease: A meta-analysis. *Clinical Psychology Review*, 78, 101847.

- Katz, R., Henneman, E., & Wendel, C. (2012). Social engagement and quality of life in Parkinson’s disease. *Parkinson’s Disease*, 2012, 1-6.

- Shah, H., Robinson, L., & King, H. (2018). The effectiveness of support groups for patients with Parkinson's disease: A systematic review. *Neurodegenerative Disease Management*, 8(1), 21-30.

- Sofi, F., Abbate, R., Gensini, G.F., & Casini, A. (2010). Accruing evidence on benefits of adherence to the Mediterranean diet on health: A systematic review and meta-analysis. *Nutrition, Metabolism and Cardiovascular Diseases*, 20(8), 651-658.

Mental awareness and YOPD by Karen Patterson

Mon, 05 May 2025 16:08:15 GMT

Shedding light on the unknown Psychosocial side of PD is very important to me. I suffered with unspecified depression and anxiety alongside leg pain and gait issues for more than a decade before receiving my YOPD diagnosis. One of the most overlooked yet critical aspects of PD is its psychosocial impact, particularly the emotional toll it takes. Yet there are so many who either don’t know or would turn a blind eye to this very REAL symptom of Parkinson’s disease.

Waves of confused emotions fill our days and haunt our nights. While our bodies and minds struggle to maintain sufficient dopamine levels. The combined effort to stay focussed, coordinate our movements and navigate daily tasks gets overwhelming. Apathy is a slippery slope straight to despair. It is fed by the negative stigma that plagues us when we are misunderstood. Parkinson’s Disease is still largely misunderstood. This is why our stories are so important. Specifically regarding how this crap affects our minds.

I can tell myself all day long that I’m ok. Count my blessings and keep my chin up by always looking into the light in front of me. Standing up for our planet with love for future generations. My Mother Nature voice and persona who never gives up or gives in.

While I don’t give up. The lows make all of us wish to give in at times. Where is the infamous “IN” people give themselves to? I dare not dream down that doom filled path. Still, I understand what it’s like to fight waves of paranoia. Fear I might never see my children again. Or wonder if I might wake up tomorrow unable to walk or talk.

Yes, and I second guess every word I write, and wonder if I’m really making a difference.

Then I look at all we’ve shared as a community. I hear our voices remixed on the wind. It lets me know that I’m loved and accepted. Yes, and provides comforting reminders that I am not alone.

Doubt and worry about the future is a bloody wound on the mind's eye. Too many people with PD suffer in silence. Isolated by the very symptoms that need connection the most. Loneliness fuels self-doubt. Staying connected, sharing stories, and supporting one another isn’t just helpful—it’s essential.

This is why telling our stories is so important. People need to know how this disease affects the mind, not just the body.

There are days when I dont feel “fine”. It’s not easy to always look toward the light, I hold on to gratitude and draw strength from nature, from love, from holding on to hope for the future. I can’t and won't give up.

Still, I’d be lying if I said I didn’t feel the pull of darkness at times. The lows are brutal. Facing fear and fatigue makes me wonder how long I’ll be able to function. Like many mothers with loved ones far away. I worry and fret over when I might hold my children again. It’s hard to admit how much it all scares me.

We need to make it known mental health is a big part of this disease. Don’t ignore it. Don’t minimize it. Talk about it and support each other. Yes, and always love one another.

Because in the end, our voices and our stories, our light and our love will melt the fog. Join me and help us shine a spotlight on what it’s really like to live with PD. www.yesandexercise.org

Help us rebrand what the world knows about Parkinson’s disease. In Dr. Robert Cochrane’s Cinema Therapy classes the psysocial side of Parkinson’s is not ignored. In fact we unpack such complex emotions within the safe space created by the group. Breaking many people free from apathy and social isolation. I invite everyone to check out the link and see how Yes…and eXercise helps improve participants' wellbeing. The place where we play improv and learn life lessons that help us improve our quality of life. One day at a time.

Sonia Mathur was 27 when everything changed.

Tue, 29 Apr 2025 17:25:55 GMT

Soania Mathur was 27 when everything changed.

She was living a full life. She had just started a full-time family medical practice in Ontario, had moved with her husband of three years from a small town to a new condo in a big city, had a bustling social life, and was expecting her first child. Everything in her life was blooming.

But there was that little twitch in her pinky finger. It was intermittent, so she ignored it, until it became more persistent and her husband, also a physician, finally encouraged her to get it checked out.

In between patients at her busy practice, she zipped over to the neurologist on staff for a quick examination. It didn’t take long: he cut to the chase, telling her, “I think you have young onset Parkinson disease (YOPD).”

It Can’t Be YOPD

At first, Soania didn’t believe him. “This couldn’t possibly be true,” she thought. In fact, she remembers being upset that she had entrusted him with her patients in the past, now realizing that he couldn’t be very good at his job if this was his take on her tiny tremor. But he offered to refer her to one of the best movement disorder specialists in the country, and she accepted.

A few months later, as Soania prepared to give birth to her first child, the specialist confirmed: it was YOPD.

The First Stage of Grief: Denial

For nearly a decade, Soania tried to ignore the diagnosis. She dove into her work. She gave birth to two more daughters. She and her husband built a new home and she built up her family practice. “Intellectually, from a medical perspective,” she explained, “I accepted it. But, emotionally, I couldn’t accept it.”

Even as she tried to look away, her life felt colored by her diagnosis. “There was always this cloud hanging over my head, impinging on all the joyful moments I thought I should be experiencing at the time.” She found herself mired in pervasive fear: “Would I be able to take care of my newborn in the same way?” she wondered. “Would I be able to keep up with my kids as they grew older?” “Would I be there for their milestones?”

In the haze of her fear and without psychosocial support from her care team, she began to dislike the person she was becoming, “more of a half empty kind of person,” she said, “as opposed to the half-full, optimistic person I was before.” She knew her mindset had to change.

How Does Parkinson’s Impact Pregnancy?

In the textbooks Soania studied in medical school, the face of Parkinson’s wasn’t hers: it was a White, older male. As a young woman, giving birth, raising a family, balancing a work life, she presented questions her doctors weren’t prepared to deal with. “We still aren’t,” she said.

“No one really knew what to do with me,” she explained. Every pregnancy was handled differently, with no established guidelines for expecting mothers with PD or even research to understand the impact of pregnancy on her symptoms, on what to expect during delivery, or the effect on her gestating children.

With no guidance other than her own intuition and medical degree, Soania chose to avoid as many of her PD medications as she could during pregnancy. Her symptoms got worse and, after each pregnancy, would improve slightly, and she couldn’t quite tease out whether the intensity of symptoms was due to the drawback of her medications or the impact of pregnancy itself. There was no research to confirm either way.

Clinical Science: A History of Inequality

The history of medical research is almost entirely male: male subjects, male researchers, male-dominated data. This means that any progress made in the medical field in the past 150 years has been based almost entirely on male biology and the male experience. We are far too diverse a population to rely on such singularly-focused data. Who are we leaving behind?

In fact, it took until 1993 for Congress to mandate the adequate inclusion of women in National Institutes of Health (NIH) clinical trials and to lift the guidance previously banning women of child-bearing potential from participating in early phase research. For Soania and other women facing a chronic disease and craving to have a family, this was personal.

Family-Life-Work Balance with YOPD

For as long as she can remember, Soania wanted to be a doctor. From a young age, her parents taught her the importance of service and charity and, so, she envisioned herself practicing medicine, in a career that called on her to give back, and with a family filled with kids. This was her dream.

And, for a time, she was living it: Parkinson’s on the back burner, her family and professional life in full gear. But, over time, her nonmotor symptoms like sleep disturbances and anxiety became overwhelming. Just to keep up at work with her ever-growing practice, she started overmedicating in order to function, to give immunizations, and to do physical exams. “I was running myself into the ground,” she said.

After twelve years of leading her beloved practice, she had to step away.

Soania felt the pain of being forced to give up something she loved. “Medicine became very much part of who I was,” she said, “consuming not only my physical time, but my mental time…When things are taken away from you not by choice but because they have to be, it’s a difficult pill to swallow.”

For the first few years after leaving her practice, she grappled with her sense of purpose and meaning and found herself missing getting to do what she had always dreamed of doing.

Eventually, her loss transformed into purpose.

Raising the Voices of Women with Parkinson’s

Today, Soania is active in Parkinson’s work: in charity, writing, speaking, and advocating. Along with other female physicians and advocates, she recently co-authored a paper titled, “Unmet Needs of Women Living with Parkinson’s Disease: Gaps and Controversies.”

Together, these advocates are uplifting the voices and experiences of women with PD at all stages of their journeys, calling on the Parkinson’s medical field to include women in drug, device, genetic, and hormonal considerations. As more women and younger women continue to get diagnosed in greater numbers, they want to know: how does PD affect women’s lives, through fertility, pregnancy, menopause, and beyond? How can we stop women from being overlooked or misdiagnosed because they don’t have the traditional face of PD? Core to their concerns, though, is the mental and emotional wellbeing of women living with this diagnosis, the psychosocial supports.

Twenty-four years after Soania was diagnosed, women are still not getting the tailored care they deserve because not enough is known about their specific needs. Soania’s co-author, Indu Subramanian, MD, said, “It’s shocking how bad the care is for some women with Parkinson’s.” They’re on a mission to change this. As they uplift the needs of women in the PD community, it doesn’t just benefit women: more research benefits everyone impacted by the disease.

Helping Children Make Sense of PD

When a woman is diagnosed with Parkinson’s, it doesn’t just affect her, it affects her whole family. I wanted to know how Soania has talked to her children about the disease.

“My kids have only known me with Parkinson’s,” she said, “so it’s normal for them. My husband and I—we have always kept a very open dialogue with them and an optimistic attitude.”

In fact, Soania says that the presence of PD in her children’s lives has grown them, too. “They developed empathy. But the most important thing they’ve learned is that life isn’t perfect and you have to learn to deal with the challenges that come your way.” They’ve learned their innate power to face obstacles—that they can’t change what challenges come their way, but they can resolve to respond to them with courage.

Soania has also written two children’s books to help facilitate conversation around having a loved one with Parkinson’s. The last of her two books she wrote with her daughters. “Kids really fear what they don’t understand,” she explained, so she wanted to give parents and grandparents and children the age-appropriate language to begin to make sense of it. Writing with her daughters has been cathartic, a chance for them to gather together, process their experiences as mothers and daughters, and use them to uplift others who may be on a similar journey.

Women Empowering Women

Changing the way the healthcare community understands the unique needs of women with PD matters. “Life with Parkinson disease can be debilitating and disabling for many, and women in particular face a set of challenges our male counterparts don’t,” Soania told me. “And this is only growing. This disease is growing in prevalence and there are going to be many women that come after us who will need and deserve optimized quality of life. This can’t be done without shining a light on their needs.”

While she believes medical professionals need to support the mental and emotional wellbeing of every patient, she also believes that women have the power to support each other. “Life as a woman with PD comes with a lot of stressful circumstances,” she said. “Women seeking the counsel and support of other women is really important.”

For the past decade, Soania has been connected to a group of women with PD who were diagnosed around the same time she was. Sharing this journey with people who truly understand it has been comforting and empowering. “When you meet someone that’s going through the same life experience you are,” she explained, “there’s a bond that forms almost automatically. It’s invaluable.”

This is the truth of human relationships: we are stronger together.

Sleep isn't something we think about - until it's gone by Asli Beyza Gul

Tue, 29 Apr 2025 17:04:20 GMT

Sleep isn’t something we think about – until it’s gone.

4 out of 5 people with Parkinson’s struggle with sleep – how can we do better?

Parkinson’s is often recognized for its movement symptoms, but it’s so much more than a tremor. It affects nearly every aspect of life, and sleep is among the first things to suffer.

4 out of 5 people with Parkinson’s report significant sleep disturbances.

(Journal of Sleep Research, 2025)

We need to shift the conversation beyond movement symptoms and focus on the full reality of living with Parkinson’s. When something as essential as sleep is disrupted, it can affect every aspect of daily life. It’s crucial to recognize and address these often-overlooked aspects of Parkinson’s to provide comprehensive care and support. Let’s take a look as to what causes this.

Sleep problems in Parkinson’s can arise for several reasons:

Dopamine loss: Since dopamine plays a key role in regulating the sleep-wake cycle, its depletion leads to fragmented sleep and insomnia.

Excessive daytime sleepiness: Parkinson’s disrupts the body’s internal clock, leading to overwhelming daytime fatigue and sudden sleep attacks.

⚡ Restless legs syndrome (RLS), REM Sleep Behavior Disorder (RBD) & involuntary movements (dyskinesia and dystonia): Uncontrollable leg movements, cramps, and muscle stiffness, make falling and staying asleep challenging. RBD is challenging for both the bed-partner and the person with Parkinson’s (PwP), with the PwP often acting out their dreams or shouting out during the night.

Medication side-effects: Levodopa and dopamine agonists can cause vivid dreams, insomnia, and even hallucinations.

Sleep matters.

Sleep is not just rest – it’s repair. When sleep is disrupted, memory, mood, and even motor function decline faster. That’s why understanding and addressing these issues is critical for improving the quality of life in Parkinson’s.

So what can I do?

If you are experiencing sleep problems, it is important to understand that it is normal and most people experience it too. It is best to discuss this with your neurologist. However, some sleep tips from experts include:

Matt Walker’s Sleep Tips

1. Stick to a Schedule: Go to bed and wake up at the same time every day, even on weekends. This helps regulate your body’s internal clock.

2. Create a Cool Environment: Keep your bedroom temperature around 18°C for optimal sleep.

3. Avoid Screens Before Bed: Reduce exposure to bright lights and screens at least an hour before bedtime to help your body produce melatonin.

4. Limit Caffeine and Alcohol: Avoid caffeine in the afternoon and evening, and limit alcohol consumption as it can disrupt sleep.

5. Wind Down Routine: Establish a relaxing pre-sleep routine, such as reading or meditating, to signal to your body that it’s time to wind down.

Andrew Huberman’s Sleep Tips

1. Morning Sunlight: Get outside and view sunlight within 30-60 minutes of waking up to help set your circadian rhythm.

2. Consistent Sleep Schedule: Wake up at the same time every day and go to sleep when you first feel sleepy.

3. Avoid Caffeine: Avoid caffeine within 8-10 hours of bedtime to prevent sleep disturbances.

4. Dim Lights at Night: Reduce exposure to bright lights, especially overhead lights, between 10 PM and 4 AM.

5. Use Sleep Hypnosis: Try sleep self-hypnosis techniques, such as those available on some apps, to help relax and improve sleep quality.

By incorporating these tips into your daily routine, you can improve your sleep hygiene and enjoy better quality sleep (n.b. click on the links above to deep dive into more sleep hygiene and how to improve your sleep tips).

References:

Asadpoordezaki, Z., Henley, B. M., & Coogan, A. N. (2025). Prevalence and associations of self-reported sleep problems in a large sample of patients with Parkinson’s disease. Journal of Sleep Research. https://doi.org/10.1111/jsr.14453

Huberman Lab, Neural Network Newsletter, Improve your sleep (may 15, 2024) https://www.hubermanlab.com/newsletter/improve-your-sleep

Sleep – Parkinson’s Australia information hub – https://www.parkinsons.org.au/information-hub/sleep/

Sleep playlist on Parkinson’s Australia’s YouTube Channel https://www.youtube.com/playlist?list=PLlvH9lsCa0Uuh27X-azVdPRCflB5IAY4g

Little Special Moments by George Ackerman, PhD

Thu, 10 Apr 2025 19:10:08 GMT

There are special moments…. The little things that can and do make a difference in many lives.

Support and creating positive, memorable moments is critical but finding that special single moment that ensures no one feels alone in their battle with Parkinson’s is something achievable with the proper community support.

One story I was told was from a fantastic association in Florida, and they had a meeting where all the members signed a birthday card for one individual struggling with PD. That simple act of love and kindness changed the individual who is diagnosed life forever. Years of lots spread the halls, and knowing she was alone and had support inspired me.

Many feel you need to go big or home, but to me, the little, tiny things motivate many and change lives for the better.

PD affects those diagnosed but also has a significant effect on care partners, caregivers, and the entire community surrounding the individual battling PD.

I challenge you to think of others and support one another because you will gain the same positive experiences and magical moments.

I remember during some of mom’s most challenging times through PD symptoms like dystonia, dyskinesia, extremely progressive weight loss, and the list continues, my other lost hope and felt she was homebound since she did not want others to see what PD had done to her. My wife and my support loved my mother and tried daily to do anything and everything to help mom smile, even for a few moments. During the most challenging times and struggles, my wife, Grether, brought manicures, pedicures, and a hair syllabus to Mom’s home; some days, mom was too sick due to PD. Still, in those small moments, something little to some may cause a world of offense to the person struggling; for that moment, PD didn’t win and didn’t stop Mom from feeling like a person again despite all that PD significantly takes from a person diagnosed. I am forever grateful for those small memories where we fought back against PD and created memories that will never be taken from us since PD takes so much from those diagnosed and their loved ones daily.

We sometimes sit and think about how we can improve lives, and most times, that little note, card, or hug genuinely changes lives for the better…. Try it sometime and send your stories or the effects of the little things on you or your community.

Pass the love and positive support onward because we can all make a difference and endure those diagnosed, and the community never feels alone.

Celebrating Progress and Innovation in Parkinson’s Care by Beatrice Zatorska, Founder and CEO of PD Buddy App

Mon, 07 Apr 2025 16:15:19 GMT

April is Parkinson’s Awareness Month, a time to reflect on the ongoing fight against Parkinson’s disease and the impressive progress we’ve made in understanding and managing this challenging condition. It’s an opportunity to highlight how much has changed in terms of Parkinson's care—both medically and technologically—and to remind ourselves that the future looks brighter than ever for those living with PD.

Breakthroughs in Parkinson’s Research: What's New?

As we look back on recent advancements in Parkinson’s care, it’s clear that the landscape has changed dramatically. Researchers and healthcare professionals are discovering new ways to slow disease progression, enhance symptom management, and improve the overall quality of life for those living with Parkinson’s. Here are my top picks of the most important recent developments that will continue to make life better for those with PD.

Infusion-based Therapy: One of the most exciting developments is Vyalev (also known as Produodopa in Europe, Canada, and Japan), an infusion-based therapy approved by the FDA in October 2024. Vyalev provides a continuous flow of levodopa/carbidopa, enhancing "on" time and reducing unpredictable motor fluctuations. Available in the UK and EU since February 2024, it offers more consistent symptom control, reducing the highs and lows that many Parkinson’s patients struggle with. Alongside Vyalev, the FDA approved Onapgo, a subcutaneous infusion therapy for advanced Parkinson’s, offering continuous symptom control without the peaks and valleys of traditional medications. The TOLEDO Phase 3 trial has shown that Onapgo significantly improves "on" time and reduces "off" time, marking a major milestone for advanced Parkinson’s treatment.
Adaptive DBS: Medtronic’s Smart Brain Stimulation, which received FDA approval, marks a significant leap forward in Parkinson’s treatment. Unlike traditional Deep Brain Stimulation (DBS), Adaptive DBS (aDBS) adjusts in real-time based on brain activity. This personalized approach offers better symptom management, fewer side effects, and longer battery life. The BrainSense Electrode Identifier (EI), part of the system, allows for more precise electrode placement, ensuring a more efficient treatment from the start. Backed by real-world trial data from the ADAPT-PD study, this approval marks a pivotal moment in personalized Parkinson’s care.
Advancements in Biomarker Research: In November 2024, researchers from the University of Barcelona identified ecto-GPR37 in cerebrospinal fluid as a potential biomarker for Parkinson's progression. Higher levels of this molecule were linked to slower disease progression, offering promise for personalized treatment approaches.
Acetyl-DL-Leucine Observations: A September 2024 study explored acetyl-DL-leucine's effects on two people with REM sleep behavior disorder (RBD), an early Parkinson's indicator. Treatment led to symptom improvement and even reversal of certain brain imaging markers after 22 months. However, cognitive decline was noted, necessitating further research to confirm these findings and understand the underlying mechanisms.
Crexont: The approval of Crexont, a longer-acting version of levodopa/carbidopa, marks an important step in simplifying Parkinson’s treatment regimens. It requires fewer doses, offering extended symptom relief and improving quality of life.
Stem Cell Therapies: Meanwhile, progress in stem cell therapies, such as those by Bluerock Therapeutics and Aspen Neuroscience, is making strides in repairing or replacing damaged dopamine-producing cells, providing hope for those seeking more permanent solutions. Notably, Lund University’s treatment, which successfully implanted lab-grown brain cells in a patient, has led to significant improvements in both symptoms and lifestyle.
AskBio’s Gene Therapy: AskBio’s investigational gene therapy AB-1005 has gained Regenerative Medicine Advanced Therapy (RMAT) designation from the FDA. Early Phase Ib studies have shown promising safety and efficacy in slowing Parkinson’s progression and improving motor function. This gene therapy, which delivers a gene that supports dopamine-producing neurons, could be a game-changer for Parkinson’s patients, especially as it moves toward accelerated approval.

Personalized Parkinson’s Care

Parkinson’s care is moving from a one-size-fits-all approach to one that is highly personalized. As Professor Bas Bloem aptly put it, “There are 10 million types of Parkinson’s because there are 10 million people with the condition.” The shift towards personalized care means that treatment is tailored to each person’s unique needs. This includes precision medicine, wearable tech for real-time symptom tracking, and customized exercise and nutrition plans. People with Parkinson’s now have more control over their health, and this means better outcomes and more hope for the future.

Exercise as Medicine

Exercise continues to be a cornerstone of Parkinson’s management. However, new research shows that not all exercise is created equal. High-intensity aerobic exercise, like boxing or strength training, has been proven to improve brain function and slow disease progression. By integrating personalized exercise plans based on an individual’s symptoms, Parkinson’s patients can experience better mobility, strength, and overall health.

Food as Medicine

Natural compounds like turmeric, green tea, and probiotics are being explored for their potential to reduce brain inflammation and protect against Parkinson’s. Diets such as gluten- and dairy-free, Mediterranean, keto, and intermittent fasting have shown benefits for managing symptoms and supporting brain health.

Wearables and Digital Health: Tracking and Improving Care

The rise of wearable tech and digital health tools has opened up new ways to monitor symptoms in real-time. Devices like smartwatches, sensors, and apps are now being used to track movement patterns, sleep quality, and symptom fluctuations. This provides valuable data for both patients and doctors, enabling data-driven decisions on medication schedules, lifestyle changes, and exercise routines, making care more precise and personalized than ever before.

Why Parkinson’s Awareness Month Matters

Parkinson’s Awareness Month is an opportunity to reflect on how far we’ve come and get excited about where we’re heading. From personalized treatments to therapies that slow disease progression, the future of Parkinson’s care is brighter than ever. However, there’s still work to be done. Awareness is about more than just educating the public about the disease—it’s about celebrating the progress made, sharing the stories of those living with Parkinson’s, and advocating for continued research and innovation.

For me, as someone who works every day with people living with Parkinson’s and their families, this month is a reminder of why we do what we do. The advances in research and treatment are incredible, and we’re just scratching the surface of what’s possible. Let’s celebrate the breakthroughs, share the successes, and keep pushing forward—together.

Parkinson's Awareness Month, What does it Mean? by Karen Patterson

Mon, 07 Apr 2025 16:04:38 GMT

April is the month when some of my closest friends and I come together with a shared mission: to find a cure for Parkinson's Disease. For many of us, this cause is a year-round commitment. We tirelessly advocate for more funding for research by raising our voices to state leaders and across social media to make sure our message is heard.

It's a time we remember those we’ve lost in this fight. Still, Parkinson’s Awareness month is not only a time for reflection—it is a time for action. It is time to call on government officials and healthcare leaders. We must move the public at large to stand with those affected by Parkinson's Disease. It is time to say "enough is enough." We will not be silent, we will not be ignored. Yes, and we will not rest until a cure is found.

While the month was chosen around the birthday of James Parkinson. We know his outdated version of PD is no longer valid. The Parkinson’s Avengers lead us with Spark the Night on April 11th with a dynamic shade of blue lights glowing around the globe. It doesn't erase the harsh reality. The number of people being diagnosed keeps multiplying while the powers that be continue to turn a blind eye. It is appallingly unacceptable. Parkinson’s awareness month is about standing together and demanding a better way.

While the efforts of advocates, researchers, and community leaders have grown, it is clear that we must push harder. We must raise our voices louder. We need to demand greater support from our leaders. The struggle for a cure, for better treatment options, and for access to care is not over. The stress Parkinson’s Disease puts on our future is staggering. The global Parkinson’s community continues to face the miserable truth that too often, the needs of those living with the disease are ignored by those in positions of power who are not listening.

We have to make them listen. The stakes couldn't be higher. We must share our stories to save our lives and our future. Knowledge is power. The more we share our individual stories about what this disease does to us. The better the researchers will learn how to fight it. We can’t fight what we don’t understand. So we must make more people understand how much their stories matter.

So for me. Parkinson’s Awareness month is all about growing this community. Everyone who is affected by Parkinson’s disease has a story that matters. A story that is important. From the patients to the caregivers. We all can make a difference. Yes, and we must. The future of mankind depends on it.

This proclamation serves to honor the tireless work of advocates, scientists, and loved ones. My wish is that it reminds us all that the battle for a cure continues. Our collective action can and does make a difference. One brutally honest story at a time.

What Would You Tell Your Former Self?

Mon, 24 Mar 2025 18:20:15 GMT

This month we asked our Members to share the "Things I wish I knew". Whether it's a doctor, a resource, or an experience you wish you had known about sooner - your stories help others in the community.

Here are some of the responses:

Seriously rethink your investment strategy. There is a 10% penalty for early withdrawal of IRA/401(k) funds unless you are disabled according to the federal government, which is a difficult standard to meet. You may be disabled enough to not be able to perform your usual and customary job, but that's not the standard. Even if you are disabled according to their standards, it can be a very slow process and you will need cash to bridge the gap. Like two years worth of living expenses. I wish I had stopped putting money in tax-deferred investment vehicles earlier and switched to money market accounts or high yield savings accounts or other short-term investments that would allow me to access my own money without penalty. Related: find a financial planner who is comfortable discussing disability and "early retirement". I have found that most are not equipped to deal with the curveball of YOPD. They keep wanting to treat me like a traditional client with a normal lifespan and a normal age of/path to retirement.

I wish I could have told my future self that I would figure out how to live fully with this disease even with so many unknowns about how I was going to progress.

Nothing. I knew there would be no financial, medical, legal, or legislative support. I was right.

Postponing an official diagnosis is tempting but not helpful because you can waste valuable time when you could have been implementing helpful strategies like additional exercise, supplements, and so on.

To get my finances right. Life insurance, Retirement, 401 plans, savings accounts etc. When you don’t expect to stop working at a young age you don’t think about these things as much. I wish I would have saved more and put more money into these types of accounts for mine ands my family’s future.

I wish I would have waited a bit longer to start medications and DBS. I feel as though I rushed into things hoping for a miracle.

I would have gone straight to a Parkinson’s Center of Excellence for my diagnosis and initial treatment, instead of my local health system. I eventually made it into the Center of Excellence and both the care and caring attitude of the team has been superb.

I wish I had known about the overlap between menopause symptoms and YOPD and I wish the physical therapist treating me for frozen shoulder (common early menopause and common early PD symptom) had recognized the lingering weakness and stiffness in my arm was being caused by PD - I could have caught my diagnosis nearly a year earlier.

I wish I had prioritized my physical health more, even before my PD diagnosis. As a working mom, it was easy to justify the needs of others (family/job) before my own. Nothing like a PD diagnosis to force a reframing of priorities and committing to putting my health first to make sure I'm as healthy as possible for myself and my family!

There are so many things I wish I had known earlier. I think what would help me the most would be the assurance that I can still live a great life with this disease.

Early on, I was afraid of the answers, so I didn't ask the questions. I didn't pursue a diagnosis as vigilantly as I could have, trying to keep my head in the sand for as long as possible. I knew I was sick and getting worse as the years passed. Other health problems arose and I became completely incapacitated before I turned 40 years old. I made much of my early adult life sicker than I needed to be, going undiagnosed and unmedicated for 20 years.

During my diagnosis process, I was convinced life was over. No career, no college, no driving, no social life, no goals. I was certain I was doomed to a slow slide into a dark and meaningless existence.

What I know now is that this disease has revealed my most authentic self. I live as truthfully as I can, I speak from the heart and have no guilt over taking care of myself first. Some of what I thought was over was accurate, but what has taken their place is unpredictabily rewarding and incredible.

Wish I had known what a movement disorders specialist was as opposed to a basic neurologist. I was given a dopamine agonist for my early tremors and had a very bad reaction. I proved to be very sensitive to medications. Finally found the right Neurologist / movement disorders specialist who prescribed an altogether different medication with very slow incremental increase that worked.

Yes, I wish I had known more about different doctors. Several we tried were not that good despite having been trained at prestigious hospitals etc.

I wish it had been possible to have a team of specialists coming together to work with my son. In Arizona for example, at the Mohammed Ali Center that is how things are done. (I know about that from webinars (ZOOM sessions) with PMDAlliance which is headquartered there. I spent a huge amount of time trying to keep my son's doctors and specialists informed. For example, when my son was hospitalized, his PCP did not even come there to see him. I found only 1 movement disorders specialist who actually saw patients in the hospital. I was able to get him to agree to take him as outpatient which worked really well until the doctor retired.

My journey to diagnosis took 14 years. I was told by multiple neurologists to go away. How could a young man who played basketball and soccer have a progressive neurodegenerative disease? The doctors were baffled, but deep down I knew something was not right. In 2022, I had enough and finally whatever was happening to me needed care. I took a DatScan and was told on the patient portal while I was teaching that I had Parkinson's disease. Finally, I had an answer and thankfully medicines that worked. I wish I knew how much a person with PD can improve with proper medical care. I went being constantly off balance and weak to coming in 8th in a 5k race. That's 8 out of 500 runners. I could grab the ten foot rim while playing basketball. I could skateboard again. Sounds remarkable, right? I wish I knew that when I read the message in the patient portal and the world felt like it was conspiring against me.

I wish I had started carbidopa levodopa on day one. My main issues are tremor in my right hand, and bradykinesia and some akinesia in my right hand, and a bit in the arm.

I started CL around three weeks ago. This is after about thirteen months after my diagnosis. I waited partially because I didn't fully mentally debunk the myth that starting CL early causes dyskinesia earlier, even though they say that's officially debunked. I was also overly afraid of "immediate" side effects. I haven't had any side effects after taking the CL. I also haven't had any benefits, and I realize that finding the right medication is a process.

After that lack of response, I realized that there's no point in waiting because there's no guarantee the dose and medication you're first prescribed will work. Something will almost certainly work! Don't get me wrong. But it may take time, so you're better off starting right away.

Also, if you do end up having side effects, it's better to know that straight away, so that you and your doc can try to figure it out. The way I did it, I waited on taking CL until my bradykinesia made my typing quite hard, and my hand started going into a tremor when I do certain tasks, and I started having some more tremor frequency throughout the day (versus day one of my diagnosis).

I assumed when I started taking CL that the bradykinesia would go away, and maybe the tremors. But neither has yet, so now this is sort of "lost time" with slightly more advanced symptoms that are having a mild, yet annoying effect on my quality of life. Whereas if I'd started CL 13 months ago, I probably would have at least the bradykinesia more under control, and maybe the tremors too.

The worst part is that I did all of this knowing that not everyone has an immediate response to CL. So I even ignored the wisdom and advice of the PD community, in favour of my flimsy excuses. So definitely don't do that.

Good luck!

Living with Parkinson's Disease? Participate in this study

Thu, 20 Mar 2025 15:38:00 GMT

We would like to hear from you (and your care partner) and learn your perceptions about treatment options for Parkinson's Disease.

For this study we will ask you to complete a quick online survey & an online interview. STUDY LINK.

For more information about this study please email pd-study@kieloresearch.com.

What would you share about your experience with YOPN with others living with YOPD?

Sat, 15 Mar 2025 16:21:28 GMT

April is Parkinson's Awareness Month, and we want to shine a light on the power of shared experiences within our YOPN community. This month, we’re asking: "What would you share about your experience with YOPN with others living with YOPD?"

Your journey, your insights, and your stories have the potential to help someone else feel more supported, informed, and connected. Whether it’s advice, resources, or moments of encouragement, we want to hear it all. Share here

What aspects of YOPN have made the biggest impact on your journey?
Is there a resource, group, or connection through YOPN that’s been invaluable to you?
Have you made a connection or new friend through YOPN?
Have you gained knowledge or support you wish you had earlier in your diagnosis?
Is there a piece of advice or a perspective you’d share with someone newly diagnosed?

Your responses will help us highlight the strength of this community and provide guidance and hope to others navigating their own YOPD journey. We’ll feature your anonymous insights in blog articles, social media posts, and our monthly member update throughout Parkinson's Awareness Month.

Let’s use this month to lift each other up and spread awareness — your voice matters. Share with this Form.

My PD Experience by Jenny Newman

Fri, 14 Mar 2025 15:34:20 GMT

Part 2: Dealing with the Diagnosis

Some moments in life stick with you forever, etched into your memory like they just happened yesterday. Realizing you have a chronic, progressive neurological disease is one of them. It was a quiet Sunday morning in October. My husband and I had just woken up and were reading on our iPads. In my in-box was a message with the results of the DaTscan taken 36 hours earlier. “Should I open it now?” I asked. “Sure,” came the reply next to me. The words at the bottom of the report read, “consistent with Parkinson’s disease,” and shocked what little grogginess remained in us. Tears flowed. Arms hugged. Promises were made.

The next morning, I called the neurologist. The conversation on the other end of the line went something like this:

I see your results here but I’m just not sure. I want you to see a Movement Disorder Specialist as soon as possible … that’s a neurologist who specializes in Parkinson’s … and, hey you’re really lucky because Georgetown Medstar is practically in your backyard and they are the best, and also, I already called in this drug for you that I want you to start taking today. It’s called Carbidopa-Levodopa, it’s the gold standard, you’ll take it three times a day, and you’ll know for sure if you have Parkinson’s in two or three days because if your symptoms improve, then you have Parkinson’s, and if they don’t improve then you don’t have it.

My head was spinning after that word salad and I asked very carefully with intentional emphasis, “I need to know: Do. You. Think. I. Have. Parkinson’s?” I’ll never forget her audible sigh followed by a defeated-sounding, “Yes.” I could feel her sadness in that sigh. She was a sleep disorder neurologist and PD was not her specialty.

About 6 weeks later, we met with the MDS at Georgetown Medstar and he confirmed that I had Young Onset Parkinson’s Disease.

Thus began what I humorously now refer to as my 10-month long “pity party.” I’m not trying to be flippant here. It’s a terrible diagnosis and I needed this time to grieve for the future I thought my husband and I would have together. There’s no doubt that it has been altered greatly. But it’s not a place to linger long. You need to get to the other side of it.

From the get-go, he and I would tell each other, “At least it’s not a brain tumor, or MS, or ALS, or (fill in the blank with your terrible disease of choice).” I tried to stay strong and keep a brave face, but let me tell you, it was a really dark time. I found myself in tears often, especially when I had the house to myself.

Early on, I remember many hushed FaceTime conversations with some of my close friends conducted in our bedroom closet. It was the only place in the house where I knew I couldn’t be overheard by our kids.

Telling our twin daughters went better than expected, probably because my husband didn’t give me time to fret about it (he knows me so well!). We were all together one day and he looked at me and said, “We might as well tell them now,” giving me no choice but to tell them. They were just 22 years old, but they handled it with compassion and maturity.

Here’s where I hit my turning point and how I left the pity party behind. I had a checkup with my MDS, and I told him I was really worried. He said, “Oh, about Covid?” (we were still in the pandemic at the time). “No!” I replied, “Parkinson’s!” He basically brushed me off and said something like, “Everybody has something. Just take it one day at a time.” To say I felt like my emotions were being dismissed is an understatement.

After my appointment, I met up with Anna Grill, the founder of YOPN. She had graciously invited me to meet her for lunch at a nearby restaurant. She was the first person I’d ever met with YOPD and she was so sweet and kind. We shared our PD stories and I remember asking her a ton of questions. At some point during lunch, I told her about my frustrating conversation with my MDS earlier that morning. I just knew she would be as indignant as I was. Her two-word reply shocked me to my core. “He’s right,” she said quietly. She advised me to leave my pity party behind and start living. Boy, was that a message I desperately needed to hear from someone who actually had the same diagnosis. She was right.

I always knew that I had so much going for me, but it was time to truly appreciate it! I have a loving family, strong faith, wonderful friends, and good health insurance. I am going to be fine. Even when I’m not fine (and there are days when I am far from it), I will be fine.

My favorite song lyrics from The Barenaked Ladies tune, “Lovers in a Dangerous Time,” is now my motto: “Nothing worth having comes without some kind of fight. Gotta kick at the darkness 'til it bleeds daylight.”

Kick at the darkness, my friends. Never stop kicking at it.

Author’s Note: If you are having thoughts of suicide or self-harm, please reach out for help today. Whether it's a trusted friend, family member, or a mental health professional, don't hesitate to lean on someone for support. You can also contact a suicide prevention hotline—they're there to help you through this. In the US, you can dial 988 anytime to speak with someone. You are not alone, and you are loved.

My YOPD Experience (So Far) by Jenny Newman

Fri, 14 Mar 2025 15:30:54 GMT

Part 1: The Road to Diagnosis (published in July 2024 issue of The YOPN Times)

My Parkinson’s journey started, as it often does, with a curiously twitchy finger. My immediate reaction, however, is embarrassing to admit: I held my right hand up to my husband and said quite glibly, “Look, Honey, I’ve got Parkinson’s!”

Seriously, I said that! I both cringe and chuckle when I think back on that moment. Karma is, as they say, a … well, we all know what they say about Karma!

Of course, I didn’t think I had Parkinson’s. That would be crazy! I was a healthy 47-year-old, the vice president of a small publishing firm, happily married with twin girls about to start college. Life was busy and exciting! Parkinson’s doesn’t happen to women my age – the twitchy finger was clearly stress-related.

Over the next few years, many seemingly unrelated issues started happening to my body, and I had an excuse for just about all of them: slowing down (well, I’m not getting any younger), stiffness in my right arm and shoulder (it’s all this computer work), tiny handwriting (it’s because I don’t write very often. It’s a lost art, you know.), insomnia and GI issues (happens to everyone!). The list goes on.

But there were other issues that I couldn’t ignore. The worst was that the toes on my right foot would curl painfully when I walked. I tried everything: multiple trips to my Orthopedic doctor who was completely stumped, stretching, and many rounds of physical therapy, but nothing gave me relief. Of course, I would much later learn that this is called Dystonia and is very common in Young Onset PD.

When I kept making typos at work, I went to my primary care doctor and complained that my right hand felt like it couldn’t keep up with my left, resulting in constant frustrating typos. It was so bad that I started using voice-to-text assistive technology to compose emails. I remember holding up my hands to my doctor and wiggling my fingers fast on my left hand and then showing him the same movement on my right hand, which was at about half the speed and much less graceful. He thought I had a pinched nerve and wrote down the name of a neurologist. Unfortunately, I never mentioned to him the occasional slight tremor or the toe cramps because I didn’t realize they were related. Lesson learned there!

And did I visit that neurologist? Of course not! I figured if it was a pinched nerve it would work itself out eventually and I didn’t want to open another medical “can of worms” when I was dealing with the toe cramps.

But then came the day I’ll never forget, a gorgeous sunny September day in 2020. My husband was sitting on our front porch when I came outside to put a letter in the mailbox at the end of our driveway. As I walked back up the front porch, he was looking at me strangely and said, “Your right arm isn’t swinging when you walk. Your left arm is swinging normally but your right one is just hanging there like it’s dead. What's going on?”

I told him I had no idea what he was talking about, laughed a little bit, and went back inside to work.

Five minutes later, my husband walked into my office, iPad in hand, and said in a serious but soft tone, “I hate to say this but I think you have Parkinson’s. You need to see a neurologist.” I’ll admit, I was more annoyed than concerned. “Oh come on! Are we really doing this?” I asked him. But as I looked at the list of symptoms on his iPad, my face dropped as I realized that I had so many of them.

The next morning I called the same neurologist that my GP recommended I see a few years earlier. She ordered testing including a DaTscan. A few days later, on a Sunday morning, I opened an email from the imaging center with the results of my scan that they had conducted 36 hours prior. Most of it was undecipherable without proper training except the last part that said, “consistent with Parkinson’s disease.”

Our world was rocked.

Key Lessons We Learned After 5 Years with Parkinson's by Beatrice Zatorska, Founder and CEO or PD Buddy App

Tue, 11 Mar 2025 14:56:16 GMT

When my husband was diagnosed with Parkinson’s five years ago, we felt lost. There was so much we didn’t know, and the advice we received from doctors was minimal. We mostly heard about medications and basic symptom management. Over time, though, we realized that managing Parkinson’s requires a more holistic, tailored approach, something we wish we had understood from the start. Here's what I wish we’d known when we first began this journey.

Exercise is Crucial — Start Early

If there’s one thing I would emphasize most, it’s the importance of physical exercise. Early on, we didn’t fully grasp how essential exercise is in managing Parkinson’s. We thought focusing solely on medication would be enough, but regular physical activity has proven to be one of the most effective ways to manage symptoms and improve quality of life.

My husband now follows a daily routine that includes stretching, strength exercises, and walking. These exercises help reduce rigidity, improve balance, and lift his mood. We didn’t start incorporating these exercises until later, but I now know how beneficial it would have been if we had made exercise a priority from day one.

Better Medication Management and Diet Go Hand-in-Hand

When my husband was first diagnosed, we focused on taking his prescribed medications but didn’t pay enough attention to how his diet could impact their effectiveness. We later learned that protein can interfere with the absorption of Parkinson’s medications, something we hadn’t been told by the doctor. We’ve since developed a meal plan that avoids protein during medication windows, focusing on lighter, easily digestible meals at those times (mainly vegan). This adjustment has made a noticeable difference in how well his medication works. Beyond that, we also started focusing on a nutrient-rich diet to support his overall health, ensuring he gets plenty of antioxidants and anti-inflammatory foods like leafy greens, berries, and fish and avoids dairy, gluten, ultra-processed food, red meat and alcohol. Regular blood tests have helped us identify any deficiencies that could impact his Parkinson’s symptoms, and we’ve adjusted his diet accordingly.

Holistic Approaches to Treatment Matter

We also wish we had explored alternative therapies earlier. Over time, we’ve learned that Parkinson’s treatment isn’t just about medication — it’s about supporting the body and mind in all ways. Practices like acupuncture, qigong, and autogenics have helped manage symptoms like stress and rigidity. We also explored supplements, but it’s important to approach these cautiously, working with professionals to ensure they don’t interfere with conventional treatments.

Mental Health is Just as Important

Parkinson’s is not just a physical disease; its emotional and mental toll can be just as significant. For my husband, the loss of his mother at a young age created a lot of unresolved grief and emotional trauma, which contributed to stress and worsened his symptoms. I wish we had recognized earlier that mental health plays a critical role in Parkinson’s management.

We’ve since incorporated meditation and mindfulness practices into his daily routine to help manage stress and improve emotional well-being. Therapy has also played a role in addressing past trauma, and it’s become clear that managing mental health is just as essential as managing physical symptoms.

Work with a Team — Not Just One Doctor

When my husband was first diagnosed, we primarily relied on our neurologist to guide us through treatment. While they are a key part of the care team, we’ve since learned how important it is to work with a broader range of specialists. A naturopath has helped explore natural remedies that complement medical treatments, and a dietitian has been invaluable in creating a nutrition plan tailored to his needs.

Routine is Vital

Along with exercise, having a set daily routine has been crucial in managing Parkinson’s. Parkinson’s can make it difficult to maintain structure, but we found that consistency in daily activities helped improve both physical and mental health. My husband’s routine includes time for exercise, medication, rest, and meals — all planned to help manage symptoms and keep him on track.

Get Rid of Chemicals in Your Life

We didn’t realize how much environmental factors could play a role in Parkinson’s. Over time, we’ve been eliminating harmful chemicals from our homes and daily routines. This includes switching to natural cleaning products, eliminating unnecessary plastics, and reducing exposure to chemicals in food and skincare. While it’s impossible to avoid everything, we’ve found that creating a cleaner environment has helped my husband feel better.

The Power of Social Support and Connection

The emotional toll of Parkinson’s disease is real, and it’s something we didn’t fully appreciate in the beginning. It’s easy to get caught up in the medical side of things and forget how isolating it can be. We didn’t know the importance of surrounding ourselves with a support network of family, friends, and fellow Parkinson’s warriors who truly understand the journey.

I’ve learned that the connections we’ve made — especially through support groups and online communities — have been invaluable. They’ve helped us learn new tips, share our experiences, and remind us that we’re not alone. This connection also brings hope and inspiration when things get tough. If I could go back, I would tell myself not to wait so long to seek out these support networks. There’s a whole community out there that can make the road easier to walk.

If I could go back and give myself advice when my husband was first diagnosed with Parkinson’s, I’d tell myself to take a more holistic, personalized approach. The conventional path is important, but it’s not enough on its own. Combining exercise, a tailored diet, medication management, alternative therapies, and mental health care has made a world of difference in how we manage Parkinson’s today. Parkinson’s is not just a physical disease; it requires addressing the person as a whole. By taking this approach, we’ve learned to live a better quality of life despite the challenges.

Parkinson’s management is an ongoing learning process. The key is to never stop researching, experimenting (safely), and building the right support system. We still don’t have all the answers, but we’ve learned that Parkinson’s is a journey best taken one step at a time, with the right tools and mindset.

What I wish I would have known before I was diagnosed by Karen Patterson

Tue, 11 Mar 2025 14:48:47 GMT

What I wish I would have known before I was diagnosed...

First, I wish I would have known sooner. I wish someone could have explained what was happening to my body and my mind. Some clear clues to shed light on the unexplainable. A link to make my words and odd reactions make sense. I wish I would have understood a lot of things. I wish…

I wish the world was a different place. I wish I didn’t have this ailment that affects my face.

The loss of face. The four words that start the term most professionals use for a loss of facial expression or facial masking.

Yet the ‘loss of face’ is also seen in some cultures as a falling from grace. Signaling shame. It’s interesting how the same words can have different meanings depending on who is using them. I wish I’d known how different kinds of trauma affects a person as a whole. Not just people with PD. EVERYBODY! I wish…

Parkinson's disease is the fastest growing neurological disease on the planet. The reasons feeding into that hard to swallow fact are endless. This is no joke. I also wish I had known the facts about toxic chemical exposure. Like many of us I spent years failing to hide my symptoms. Or cover them in blanket terms like ‘I’m just a clutz’ or ‘two left feet’. Dangerous tales that included jokes that go back to my childhood. My dad often said I tripped over cracks in the sidewalk. In a place where the ground moves as much as California. In truth, I often did.

Early childhood balance issues. Repeated adolescent head trauma. Young adult lymes disease. Persistent social isolation as an adult. I wish I had known how all of these things contributed to years of undiagnosed confusion. I wish…

Yes, and I wish I would have known much MUCH earlier how a diet, specifically a gluten free diet, and exercise could ultimately set me free. Not from PD. Because we haven’t yet found the secret combination to do that. Finding the right diet is how PD helped me find a road towards a healthier me. Still. I wish…

I wish the cure was here today. Or perhaps yesterday. Those long years so many of us had no choice but dismay. Crying to doctors, family and peers asking. ‘Please isn’t there another way?

Hope is on the horizon. Ending Parkinson’s disease 2 is on its way. With it more action to take. I hope it will inspire more to stand up and say. We the people with PD demand to have our say.

I wish I knew so much sooner that it was true. Yes, and I share my stories to help find a cure that is new. In that book there is a lot of truth to be told. Our stories are important. To make change we must stand up and be bold.

When Loneliness Happens by Karen Patterson AKA Mother Nature

Mon, 10 Feb 2025 15:14:39 GMT

Time passes slower for the lonely soul. When loneliness happens, It can be just as profound in a crowded room as it is when one is truly by themselves. Most people don’t understand. For those of us battling Parkinson’s disease, the loneliness some of us feel in crowds is all too real.

Frustration caused by movement and communication issues, struggling to make sense and stay upright is harder than it looks. While our facial expressions change, it adds to the confusion. We try to explain but the struggle to be understood just adds to the anguish many of us feel. True communication breakdown. Causing stress, loss of time, and loss of will until apathy creeps in. Then caring and the patience to keep trying to make others understand flies out the window.

Loneliness is mentally crushing and debilitating. It leaves you waiting, wondering and worried about everything. About the present and the future. Being misunderstood by family and friends is the worst form of feeling lonely. This is where healthcare professionals have to play a better role in explaining to family members about the psychosocial side of Parkinson’s. Not just leave it up to the person diagnosed to figure it out as they go along.

When they first added carbo/levo to my already full pill regime the neurologist explained I might see a fluctuation in my moods. My mom was still alive at the time and I remember talking to her about it when I felt things begin to shift. I was thrilled I found a medication that was addressing my movement disorder and speech issues. I took the bad with the good. Figuring that at some point it would balance out.

Only I was wrong. It helped many things and removing unnecessary medications improved my overall health. My quality of life deteriorated due to the sheer misunderstanding of how PD looks different for everyone. Especially for women who are also going through the perimenopause phase of life.

I’ve never really been a stranger to loneliness. Living in rural areas for most of my adult life didn’t help. Depression and anxiety were the norm for me when our family of three became a family of 4. Some of my issues with balance, facial abnormalities including drooling, and left side symptoms go back as far as my early 20’s. Speech abnormalities go back to early childhood. Causing awkward social anxiety from birth.

A week after I suffered a cracked rib during a mammogram in 2010, I was reduced from a young mother to an old woman walking with a cane overnight. It was a whole new kind of loneliness. One they called everything from fibromyalgia, possible stroke to a slight case of gamberaia. My world was forever rocked off its axis. My small family and school-aged children weren’t prepared. We did the best we could. What little independence I had disappeared. The loneliness in my head became more profound, amplified by shame and grief over the basic life skills I had to give up.

2016 found us in a different state with a different diagnosis. Young-onset Parkinson’s disease. Left up to me to figure out and explain to my family who were busy growing up and moving away. Again, I was happy I found a pill that worked. Only my family couldn't and wouldn’t accept what that one pill meant. They couldn’t get the progressing images on Michael J. Fox out of their heads. Refusing to believe that while I was losing weight and improving my health, I could have any form of Parkinson’s Disease.

As anyone who has taken this medicine for a long period of time knows. It wears on your mentality. I did what I could through research. I read about Pamila Quinn and Jimmy Choi and followed the advice of Micheal Okun while I changed my diet and tried to ‘cure’ my PD on my own. Talk about a lonely road.

Yes, and every attempt I made to include my family in my research and show how I was improving because of everything I learned. The more they pulled away.

My loneliness grew. The one local support group I tried was a trainwreck. While my symptoms progressed to the point where I wasn’t sleeping well. I spent many nights having imaginary conversations in my mind with doctors I couldn’t afford to see. Specialist who might be able to help me explain what I was going through. Taking notes for a book no one wanted me to write.

Shame, blame, guilt, denial and crippling loneliness were mine. Yes, and they still are. Only thanks to my growing network within the PD community. While I still feel a great deal of loneliness. I know I am not alone.

Yes, and while the book I’ve spent several years trying to write is still in limbo. Mine and many others like me are at last making a difference. No one deserves to navigate their PD journey alone. We all have the right to tell our story, and we need to now more than ever. All I’ve ever wanted is to love my family and make a difference in this world. Now I can. One, brutally honest story at a time.

Loneliness by George Ackerman

Mon, 10 Feb 2025 14:54:00 GMT

Loneliness

According to Webster, loneliness is “being without company, being off from others, not frequented by human beings, sad from being alone and producing a feeling of bleakness or desolation—a feeling no one ever wants” especially when battling Parkinson’s Disease.

Loneliness affects those diagnosed, care partners, caregivers, families, and the community. It has long-term effects, and some, through heartbreak, can face additional medical, emotional, and even psychological illnesses.

Combatting loneliness can be achieved through support. Family support helped me through my caregiving journey with my mother, who passed at age 69 due to PD. Many may not have family support, so they turn to the community. Support groups are helpful, but I was not even aware of them when my mother was struggling with PD. Awareness brings another obstacle, as even today, we spend countless hours advocating for PD awareness through books, blogs, and social media; I spend 24/7 trying to teach those who are unaware.

I still feel lonely many days as I miss my mother. If we had a cure, she would still be by my side, laughing, loving life, and spending time with her grandkids. I had a special relationship with my mother, who will always be my best friend. We shared the good times, and she supported me during the tough times. When she struggled through her PD battle, I often felt alone because I did not have community support and was not aware of foundations and organizations out there since I spent all my time caring for my mother and trying to find ways to help combat and slow the progression of the disease.

We lost the fight on January 1, 2020, and since I have lost a part of myself forever. The main reason I still advocate despite being too late for my mother and our family is I never want anyone to feel alone as I did as a caregiver and my other did as a person with Parkinson’s, shockingly she never even met someone else with PD so she felt she was alone, frightened and did not have the community support that today I know does exist, I often wonder if the many inspiring and unique people who are battling PD or advocates I consider family today would have just held a FaceTime call with us during the time my mother battled Pd as it would not have changed the outcome. Still, it would have brought a few smiles and likely put us all at ease that others are also going through similar but not identical experiences but the care turn. Love would have changed all our lives for the better.

There are support groups; try one virtually or live; if it doesn’t fit your needs, then try another one. Attend a walk, listen to a podcast, join social media groups and pages that are like ours, continue to try to bring smiles, hope, and achievable goals,

Never sit back and wait for others to come to you; our problem was time but knowing what I do today and seeing significant progress through research, more information is attainable and available; a decade ago, we did not know diet and exercise may slow the progression of PD down. These areas can change lives for the better, and even through exercise groups, walks, conventions, and meeting others in the community can impact an individual and their families. A significant positive way of bringing effective results and outcomes,

Although we cannot lock back, we can look forward, and I will never stop advocating for a PD cure in my mother, Sharon’s memory because today I combat my loneliness thanks to the millions throughout this beautiful community and around the world.

You are never alone. I will continue to fight right by your side until the cure is at all our doorsteps globally, Reference: Merriam Webster Dictionary (2024) Loneliness

Love, Connection, and Parkinson's: Navigating Relationships with Heart and Science by Beatrice Zatorska, Founder and CEO of PD Buddy App

Wed, 05 Feb 2025 16:22:38 GMT

Living with Parkinson’s is about much more than managing tremors or medication schedules. It affects every part of life, including relationships, social connections, and intimacy. While these topics may not always come up in doctor’s offices, research shows they are crucial for mental and physical well-being.

The Science of Social Connection: Why Relationships Matter

Humans are wired for connection. Studies consistently show that strong social support improves health outcomes in chronic conditions, including Parkinson’s. Social engagement can influence both motor and non-motor symptoms, helping people maintain a better quality of life.

A 2021 study published in Neurology found that people with Parkinson’s who had strong social support experienced:

Slower disease progression
Better mental health outcomes
Higher quality of life

Another study published in NPJ Parkinson’s Disease (2022) found that social engagement is linked to better cognitive function and mobility. Researchers observed that people with PD who regularly participated in social activities had a 40% lower risk of cognitive decline over five years (Cochrane et al., 2022).

However, Parkinson’s presents challenges that can make maintaining relationships difficult. Symptoms like fatigue, speech difficulties, and motor impairments may create barriers to socializing. Anxiety and depression, both common in PD, further contribute to feelings of isolation.

For those looking to build connections within the Parkinson’s community, the PD Buddy app offers a great way to find and connect with others who share similar interests. Through the app, people can join chat groups, find nearby individuals with Parkinson’s, and discover local events and activities to attend together. One of the key benefits of digital tools like PD Buddy is that they allow people to make these connections on their own time and at their own pace, providing the comfort and flexibility to engage when they feel ready. Whether it’s making new friends, sharing experiences, or simply finding a walking or exercise partner, PD Buddy makes socialising easier and more accessible. Staying engaged in social activities can make a significant difference in emotional well-being, reducing feelings of loneliness and isolation.

Loneliness & Parkinson’s: A Real but Solvable Problem

Loneliness is more than just an emotional burden—it has real, physical consequences. A 2023 study in The Lancet Healthy Longevity found that social isolation was linked to faster cognitive decline and increased motor difficulties in people with Parkinson’s (Chen et al., 2023).

People with Parkinson’s are at a higher risk of loneliness for several reasons:

Reduced mobility may limit participation in social activities.
Speech changes can make conversations challenging.
Depression and anxiety can make reaching out to others feel overwhelming.

How to Stay Socially Connected

✔ Be honest about your needs. If friends and family don’t understand what you’re going through, educating them can help them provide better support. ✔ Join a Parkinson’s support group. Whether online or in-person, connecting with people who understand your journey can be a game-changer. (Check out Parkinson’s UK, Davis Phinney Foundation, and Michael J. Fox Foundation, PD Buddy app for support groups.) ✔ Try new social settings. If large gatherings feel overwhelming, smaller meetups or virtual groups may be more comfortable.

Sex, Intimacy & Parkinson’s: The Elephant in the Room

Parkinson’s can affect intimacy, but that doesn’t mean love and passion disappear. In fact, research suggests that maintaining intimacy can boost mental health and even improve symptom management.

A 2022 study in The Journal of Parkinson’s Disease found that sexual activity was associated with improved mood, better sleep and enhanced motor function (Fabbri et al., 2022)

Common Sexuality-Related Challenges in Parkinson’s

1. Changes in Libido: Parkinson’s affects dopamine levels, which can alter sex drive. Some people experience reduced libido, while others (especially those on dopamine agonists) may experience an increase. 2. Physical Barriers: Stiffness, tremors, and fatigue can make intimacy physically challenging. Adapting positions, pacing intimacy, and using assistive supports can help. 3. Emotional Barriers: Anxiety, depression, or body image concerns can make intimacy difficult. Open communication with a partner is essential to maintaining closeness.

Pro tip: The 2022 study also found that couples who communicated openly about changes in intimacy reported higher relationship satisfaction.

Resource: Love, Sex, and Parkinson’s Podcast by Davis Phinney Foundation

Love & Parkinson’s: It’s a Team Effort

Whether in a long-term relationship, dating, or re-entering the world of romance post-diagnosis, Parkinson’s doesn’t mean the end of love. It simply means adapting.

❤️ For couples: Approach Parkinson’s as a team. Instead of seeing it as your disease or their disease, treat it as a shared challenge. For those dating: Be upfront about your diagnosis when you feel comfortable. Let potential partners see you first, not just Parkinson’s. For everyone: Prioritize emotional intimacy. Holding hands, hugging, and spending quality time together can be just as powerful as physical intimacy.

Final Thoughts: You’re Not Alone

Parkinson’s presents unique challenges, but relationships—whether friendships, family bonds, or romantic connections—are still very much possible. If you’re struggling with loneliness or intimacy, know that you’re not alone.

At the end of the day, Parkinson’s is part of your life, but it doesn’t define your ability to love and be loved. ❤️

Additional Resources:

Michael J. Fox Foundation: Social & Emotional Support
Davis Phinney Foundation: Intimacy & Parkinson's
Parkinson's UK: Relationships & Communication
PD Buddy app available on Apple and Play stores, free for people with PD and caregivers

Ottawa Parkinson's Games - Part Two by Dianne Bramble

Fri, 24 Jan 2025 16:06:25 GMT

I wrote an article a while ago about the disappointment in the cancellation of an international competition for PWP twice and how I decided that if I couldn’t go to the mountain, then I’d damn well bring the mountain to me.

I have been working to get this event going, it hasn’t been easy, and the struggles continue. I am getting somewhere though!

I have found a venue that is excited to help promote and host the games and I will meet with them soon to hammer out details. The new, and I hope, final date for the event is Sept 7, 2025. This is getting real!!! There is so much still to be done - pick board members and volunteers. Get permits and insurance. Raise money. So many things!

For a time, I thought I would just give up on this project, but I can’t do that. As PWP, we deserve to have something just for us, something competitive, but fun. It’s time to showcase PWP. Despite our disease, we are talented, athletic, intelligent and wonderful people.

It should be a fun day and if it goes well, I hope to expand it next year, and the year after that, and so on. Our events will be 100 m and 1500 m races. Then in a nearby athletic facility, we will be running Pickle ball and Table Tennis competitions. Our last event will be boxing (just on a bag, not each other!)

I am hoping to be able to live stream the event, in the hopes that other places will start having their own games and at some point, we will be able to hold a World Parkinson Games!!!

Dianne Bramble is a Registered Nurse in Ottawa, Ontario, Canada. She left nursing and got her certification in Health Coaching, Cognitive Behavioural Therapy, and Personal Training. Dianne’s focus is on people with chronic conditions like Parkinson’s. She’s 56, married with two kids, a dog, and a horse. She was diagnosed with Parkinson’s in September 2013. Her blogs will focus on mental and physical health.

Love, Loss, Celebration, and Free Will by Karen Patterson "Mother Nature"

Thu, 23 Jan 2025 21:19:30 GMT

As we begin 2025, the Parkinson's community has been actively celebrating many achievements and awards. The love so many of us have put into our advocacy has cultivated many fruits for our efforts in 2024.

Our dear leader, Micheal J. Fox, was awarded the Presidential Medal of Freedom. His life achievements are celebrated and honored in the highest regard. None of us in the PD community would have anything without his guiding light showing us the path to a new tomorrow. His ongoing Hero's Journey inspires us to give all to this fight. 

Yes, and while we continue to fight. Many of us have experienced loss this past year. We grieve for our parents and lost loved ones and friends while we worry about our children. We wonder how our conditions will progress while we stand up for the right to fight for our planet.

Grief comes in many forms, as a woman diagnosed after too many years of confusion. I also grieve for the person I might have been when my kids were young had I been diagnosed sooner. Rebranding of how we view this disease has to start now.

We continue to watch and wait to see if paraquat will be added to the list of banned toxic chemicals. I wish to share my poem, Free Will. Like many poems I've shared, I've been waiting for the right time to share them. Neil Peart and my mother have been gone for 5 years. While neither one of their deaths was caused by PD, their passing, along with the tragic loss of Taylor Hawkens, hit my life with emotional blows that affected me deeply, including disrupting my hormonal function and making my symptoms worse. Free Will was born during that traumatic time.

Future generations deserve to know the truth about what they face. The experts are working on a second book on Ending Parkinson's Disease. Robert Cochrane's book Acceptances is another great example of how all our stories matter. We made a big difference and got the ball rolling towards change in 2024. I know we have enough love and determination in this great and growing team to make way for more great things to come.

Please listen world, for there's another way

You don't have to do what the mass majority says

For if you listen and do everything they say

You might not live to see another day.

Never would I have ever guessed

That two decades of rhyme and reason would be put to the test

All the things I thought were harmless and good

Were the worst things for me, but I never understood.

Then at last I found the holistic way

Though long years, I would still dismay

For way too much damage had been done

Still, many twists and turns and battles to be won.

Research was my sword. Yes, I read and looked

In books, on-line, all experts new and old were checked

Cross-referenced and tested and noted and booked

All remedies across the ages for bodies so wrecked

All of their stories to heart and mind I took.

And from all this knowledge, all my tea remedies grew

Into something resembling a thick, sweet, witchy brew

The smell is strong and somewhat bittersweet

And what ails the body these brews do treat..

For too many years, I listened to odd doctors and peers

Twisted and turned and wound up in tears

Every pill they tried just made everything worse

Their cocktails were said to be keeping me alive

Yet walk away from it all to never again dive

Into their mess that was pain pill derived

And back to mother earth who did keep me alive!

For her, remedies are old, tried, and true

Long before labs, those elders knew.

For too long, the masses have turned a deaf ear

If we listen and learn, it becomes very clear

For God only helps those who help themselves

And he made this Earth full of all that is good

With His gift of ethos, we can determine right and wrong

With open hearts capable of trust in need of a new song.

For not all things good have to come in a pill

Age-old remedies are grown and sold still

So before you try the latest greatest prescription fill

Open your mind to the exercise of free will

While modern medicine does have its place

TV and social media are not always a safe space

Pumping images of joy and hope in your face

The advice is not theirs to give

Yet like lost sheep we allow such to dictate how we live.

Does no one remember 'your brain on the box'?

Who would have thought decades of hard knocks

Would turn most of society into exactly what was

A fictional nightmare and all because

For too long, we have sat back and been told

In a pill or other quick fix, the future did hold

For far too long, these lies have been told

To all, from the very young to the mighty old

So it is Mother Nature who must now be bold

And stand up strong for the world must be told

That the answer to our future is not yet to be found

What will heal and fix most all is still grown from the ground.

Yes, and we have a responsibility to future generations to take better care of the ground we depend on for our very existence. We must exercise our free will. We need to tell our whole stories loud and proud.

Like Micheal J's famous character Marty Mcfly states and I quote. "If you put your mind to it. You can accomplish anything."

The way I see it. If we all put all our minds to it. We can find a cure for PD. One story at a time. 

Veterans Deserve Immediate Support, Care, and Urgent Assistance by Dr. George Ackerman PhD

Thu, 23 Jan 2025 18:24:13 GMT

Veterans and Parkinson's Disease are topics that hit home to me. As a police officer, (Rsv.) I worked with many military heroes throughout my experience with the United States Coast Guard Aux. I have worked with numerous families who sacrificed much to serve our country.

Veterans serving today and their families deserve only the best medical care and they deserve to be seen as a priority by medical professionals. Shockingly, though, there seems to be a lack of support and awareness for many who served and today suffer from Parkinson's Disease and other debilitating diseases after service.

One may ask how it could be possible that someone who dedicated a large portion of their life to service and is suffering from a disease directly correlated to such service. Mental health, disease, and support need to be at the forefront for our veterans and their families. Too many medical cases are now part of the national discussion, such as the numerous lawsuits from Camp Lejeune, Only now is attention being brought to the issue of water contamination causing PD in service members.

According to H.R.2192 -The Camp Lejeune Justice Act (CLJA) of 2022 allows people to file lawsuits against the Department of the Navy for exposure to contaminated water at Marine Corps Base Camp Lejeune in North Carolina. From 1953 to 1987, the base's public water supply was contaminated with toxic chemicals. Thousands of Marines and their families suffered severe illnesses and died. Over 546,500 claims have been filed, making the lawsuits from Camp Lejeune some of the most significant injury cases in the USA today. The Navy has resolved around 150 cases, but the process is expected to take several years with the first trials expected to begin next year. Some challenges to the lawsuits include; the United States contesting whether plaintiffs were exposed to contaminated water and contesting the number of damages plaintiffs may be entitled to.

For more information go to the Camp Lejeune Justice Act Claims or Camp Lejeune water contamination health issues links. We still need more awareness, immediate governmental intervention, and for all of us to get involved and use our voices to bring needed change to support our Veterans and their families.

Signing up and taking an oath to our country should never bring back reciprocal adverse outcomes. After retirement or in the event of disability, support should be provided. In speaking to a veteran, I was surprised and saddened to learn of the lack of support. One veteran I spoke with stated that there are only three bases with Parkinson's movement specialists and medical professionals throughout the United States. This does not provide enough care to meet the needs of veterans who desperately need advice, care, and support in battling PD.

Please get in touch with your representatives and call for change to support our Veterans and their families. Use these links to contact your federal representatives at the United States Senate , United States House of Representatives , Or Veterans Affairs. Together, our voices are so much stronger, and we can bring positive change and shed light on this urgent and critical area that needs more attention now. Please act now as this is urgent, and together, we can be a voice for those Veterans struggling and battling PD today, likely due to environmental issues that need more attention now!

The Need to Rewrite Dangerous Stories by Dr. Robert Cochrane, PhD

Thu, 23 Jan 2025 17:28:22 GMT

The Need to Rewrite Dangerous Stories

Storytelling is one of humanity's most profound tools. It connects us, helps us make sense of our lives, and inspires change. But when it comes to Parkinson’s disease (PD), the stories we tell—and the ones we avoid—can be dangerous.

We need to rewrite the way we talk about PD, not just for ourselves, but for the people who need to understand the stakes: our families, our communities, and the policymakers who decide funding priorities. This is not just about sharing stories; it’s about rebranding PD as the crisis it is while holding space for hope and connection.

The Danger of "I'm Fine" and surface level stories

Many people living with PD fall into the trap of saying, “I’m fine,” or presenting only the “on” moments—the times when the medication works, the symptoms are less visible, and they can function almost like their old selves. This isn’t just an act of self-preservation; it’s also for the comfort of others.

Most people don’t want to confront the reality of a degenerative disease - which is completely understandable! Denial and avoidance are powerful coping mechanisms. But here’s the catch: presenting a sanitized version of our reality leads to dangerous misunderstandings.

If we only share the highlight reel, others think, It’s not that bad. And if it’s not that bad, why should anyone worry? Why should politicians prioritize funding? Why should researchers race to find a cure? Why should communities rally to support us?

Surface level stories are equally problematic. Stop me when you’ve heard this one: I got diagnosed with PD. It was devastating. I started exercising and now I’m managing. It’s not a bad story - it’s just neither whole nor engaging. It leads to “so what?” The PD community has a need for more funding, research and understanding. That won’t happen unless we can capture hearts and minds. Surface level stories do neither.

This is why the “I’m fine” and surface-level stories are dangerous. They protect others’ comfort at the expense of our truth—and ultimately, our progress.

Why Stories Need High Stakes and Clearly Defined Obstacles

What makes a story powerful? It’s not perfection, it’s struggle. It’s the up and down, the wavelength of success and failure, triumph and defeat. Stories resonate because they reflect the truths of life: messy, unpredictable, and full of high stakes situations and obstacles.

Imagine watching Jaws and realizing the shark (talk about an obstacle!) never actually attacks anyone. Sure, it might pop its fin up once in a while, but no one is ever in real danger. Would you stick around to watch? Probably not. Stories need stakes and something to push back against or overcome—something to lose, something to fight for, something that stretches people to their limits. This is what great stories do.

When we talk about PD, we have to embrace the high stakes rather than retell the safe, surface level story. Yes, it’s degenerative. Yes, it’s awful. Yes, it’s the fastest growing neurological disease in the world and there is currently no cure. And it’s also full of moments of resilience, innovation, and humanity. These are the stories that move people, that make them sit up and say, We need to engage and do something about this.

Rebranding PD: A Crisis Worth Embracing

The scientific community is waking up to the reality that it has been telling, at best, an incomplete story about PD. PD is not solely a movement disorder as Dr. James Parkinson wrote in his essay, The Shaking Palsy, 200 years ago. That story, however, has been passed down through medical school training for more than two centuries. Thankfully, books like Ending Parkinson’s Disease have laid out the facts: this is a pandemic. The number of people diagnosed with PD is rising at a rate consistent with the definition of a pandemic. The ripple effects—on families, caregivers, and society—are enormous. PD is NOT just an old white man’s disease. It affects everyone.

But facts alone aren’t enough. Data can inform, but stories inspire action. And right now, the story of PD isn’t doing its job. Too many people think of PD as “just a tremor” or something that only affects the elderly. They don’t see the full picture: the “off times”, freezing episodes, mental fog, isolation, fear of the future, apathy, financial and relationship strain due to relentless progression.

To rebrand PD, we need to rewrite the story of PD. Not as a minor inconvenience or a manageable condition, but as a full-blown crisis. A crisis that demands attention, funding, and action.

The Power of Vulnerable Storytelling

So how do we tell better stories? Part of the answer lies in vulnerability.

It’s scary to tell the truth, especially when it’s messy or personal. What will people think if you talk about the nights you couldn’t sleep because of tremors? Or the way your relationships have shifted because of your diagnosis? Or the moments you hide and feel like giving up?

But here’s the thing: vulnerability connects us. When we see someone else’s truth, we feel less alone in our own struggles. And when we see someone rise from their darkest moments, we feel inspired to do the same.

This is where storytelling becomes medicine. It helps us process our experiences, connect with others, and advocate for change. It’s not just about telling your story; it’s about telling a story that moves your audience. A story with stakes, with heart, with a pulse.

A Call to Action: Mythologize Your Journey

If sharing your literal truth feels too personal or too raw, there’s another, and perhaps even more powerful way: mythologize yourself.

Think of yourself as a hero on a journey. Start with your reality, but then elevate it to something universal. Maybe your hero has your same qualities and struggles but is fighting metaphorical dragons or scaling impossible mountains. This is why we use Joseph Campbell’s Hero’s Journey as a framing device in our Cinema Therapy classes.

The beauty of mythologizing is that it creates aesthetic distance while still holding onto the core truth. It allows you to share your story in a way that feels empowering and engaging, not exposing. And it taps into the universal truths of the hero’s journey: struggle, transformation, and triumph. Writing in this way can free you of your fears and, at the same time, connect you to others. When we tap into well known storytelling techniques, structure and tropes, then combine it with our unique perspective and details, the audience understands, empathizes and is primed to engage - which is what we need!

Why Your Story Matters

A common excuse for not telling your story is, “Nobody cares about my story.” Here’s a hard truth: that might be true if your story is surface-level. If it’s just about minor inconveniences, problems that resolve themselves or seem completely hopeless, your audience, understandably, might tune out.

But if your story has stakes—real, raw, relatable life-and-death stakes—people will listen. They’ll feel something. They’ll remember it. And they’ll act.

When it comes to PD, we need to stop telling surface-level stories. We need to show the full picture: the highs, the lows, the struggles, and the triumphs. This is how we change minds, inspire action, and rebrand PD as the crisis—and the opportunity for change—that it is.

Rewrite the Narrative

The need to rewrite dangerous stories isn’t just about PD. It’s about all of us, as individuals and as a society, learning to tell the truth. It’s about confronting the hard things instead of avoiding them. And it’s about using storytelling as a tool for connection, inspiration, and change.

If you’re living with PD—or know someone who is—this is your call to action. Start telling the stories that matter. The stories with stakes, with heart, with truth. The stories that make people sit up and listen. If you don’t know how, then join us in the Cinema Therapy program. As a professional, award-winning filmmaker and survivor of a brutal PhD program studying the effects of improvisation and storytelling on PD, I have decades of experience in this realm. I designed the Cinema Therapy program and founded my 501(c)3 nonprofit, Yes, And…eXercise!, to help raise the unheard voices of the PD community. In order for that to happen, for us to make these changes, you must say, yes, I want this, and I’m ready to rewrite the story of Parkinson’s disease.

Because when we rewrite the narrative, we don’t just change the way people see PD. We change the way they see us—and the way we see ourselves. And that’s the beginning of something powerful.

Upcoming Cinema Therapy Classes

The Shawshank Hero’s Journey begins on Tuesday, Jan. 14. Click here for more information.

Taking Parkinson’s disease Back to the Future begins on Monday, Jan. 27. Click here for more information.

All are welcome!

What Science Says: Latest on Parkinson's Research, Pharma, and Trials by Beatrice Zatorska, Founder and CEO of PD Buddy App

Thu, 23 Jan 2025 17:04:02 GMT

As the new year starts, 2024 marked significant strides in Parkinson’s disease research, therapies, and policy initiatives. Here’s a quick look at the year’s advancements and challenges.

Game-Changing Therapies

Vyalev (brand name in the US) Produodopa (brand name in Europe, Canada and Japan): Approved by the FDA in October 2024 and Available in the UK and the EU since February 2024, this infusion-based therapy provides a continuous source of levodopa/carbidopa, enhancing “on” time and reducing symptom fluctuations.

Crexont: Approved by the FDA in August 2024, this reformulated, longer-acting levodopa/carbidopa pill provides extended symptom relief with fewer doses. Crexont is available through medical prescriptions in the US.

In 2024, anticipation grows for the results of the ASPro-PD Phase 3 trial on ambroxol, led by Professor Anthony Schapira at UCL. This trial examines whether the widely available cough medicine can slow Parkinson’s progression by enhancing the GCase enzyme, which helps break down toxic protein clumps linked to neurodegeneration. Earlier Phase 2 results showed promising increases in GCase levels and reductions in harmful protein buildup. The study aims to determine ambroxol’s effectiveness in altering the disease course, potentially paving the way for a groundbreaking and accessible Parkinson’s treatment.

HER-096: Based on the naturally occurring brain growth factor CDNF, this innovative drug shows potential to protect and restore dopamine-producing cells. The trial is taking place in Finland where 24 people with Parkinson’s will be given HER-096 or placebo twice a week for 4 weeks and monitored for any unwanted side effects.

Mitochondria-Targeted Treatments: Compounds like Coenzyme Q10, Creatine, Mitoquinone (MitoQ), and MTX325 are being studied for their ability to repair mitochondrial dysfunction and protect neurons.

Exercise and Brain Health: Prior research has shown that many forms of exercise are linked to improved symptoms of Parkinson’s disease. But there has been no evidence that hitting the gym could create changes at the brain level. Now, a small proof-of-concept study by Yale School of Medicine involving 10 patients showed that high-intensity aerobic exercise preserved dopamine-producing neurons, the brain cells that are most vulnerable to destruction in patients with the disease.

Scientific Breakthroughs

Early Detection: A blood test has emerged as a tool for detecting Parkinson’s up to seven years before symptoms appear, promising earlier interventions and better management strategies.

Gene Therapies: Therapies are exploring methods to reprogram brain cells, enhancing their function and longevity. These techniques aim to slow disease progression and protect against neurodegeneration.

Advances in stem cell therapies for Parkinson’s disease aim to repair or replace damaged dopamine-producing cells. Companies like Bluerock Therapeutics and Aspen Neuroscience are making progress, with Bluerock’s treatment showing improvements in “on” times and reduced symptom variability in Phase 1 trials. Aspen Neuroscience is focused on personalized therapies, while Lund University in Sweden successfully implanted 7 million lab-grown brain cells into patient Thomas Matsson. Following this treatment, Matsson regained his sense of smell, reduced his medication, and returned to an active lifestyle, including sports like skating, skiing, and golf.

Growth Factors: Substances like glial cell-derived neurotrophic factor (GDNF) continue to show promise in supporting the survival and function of neurons, potentially delaying disease progression.

Mitochondrial Dysfunction: Targeting mitochondria — cellular “battery packs” that malfunction in PD — remains a focus. Therapies aim to repair these structures and protect brain cells from energy deficits.

Alpha-Synuclein Clumps: Misfolded alpha-synuclein proteins, implicated in PD, are being targeted in research to prevent their accumulation and reduce cell damage.

Adaptive Deep Brain Stimulation (DBS): Research is advancing adaptive DBS technology, enabling real-time symptom tracking and personalized stimulation adjustments for better outcomes. Medtronic introduced Asleep DBS, approved by the FDA, allowing surgery under general anesthesia. Percept RC DBS system captures real-time brain activity, enabling personalized therapy with a battery lifespan exceeding 15 years. $1 billion investments in brain-computer interfaces (BCIs) and graphene-based electrodes aim to further improve precision and minimize side effects.

Several biopharmaceutical companies, including Halia Therapeutics, NodThera, and Gain Therapeutics, are developing treatments targeting brain inflammation in Parkinson’s disease. NodThera and Halia focus on blocking NLRP3, a protein complex that drives harmful inflammation, while Gain Therapeutics is working on a therapy aimed at correcting the GBA1 gene, which increases Parkinson’s risk and may slow disease progression.

Treatment focus on the gut, with promising advances in probiotic therapies and mitochondrial-targeted drugs. Researchers have developed a probiotic that synthesizes L-DOPA in the gut, reducing the need for frequent doses and minimizing side effects, while animal trials show improvements in motor and cognitive functions. Additionally, drugs targeting gut bacteria like Enterococcus faecalis, which degrade levodopa, have shown success in ensuring more levodopa reaches the brain, enhancing its effectiveness and reducing side effects. These developments signal a shift towards more personalized, gut-focused therapies.

Changes in Parkinson’s Care

Food as Medicine: Natural compounds like turmeric, green tea, and probiotics are being explored for their potential to reduce brain inflammation and protect against Parkinson’s. Diets such as gluten- and dairy-free, Mediterranean, keto, and intermittent fasting have shown benefits for managing symptoms and supporting brain health.

Telemedicine and Smartwatches: Advances in telemedicine and wearable technology like smartwatches are enhancing patient care by enabling remote monitoring. This allows for better tracking of symptoms, empowering patients to make more informed decisions about their treatment.

Holistic Patient Approach: Patients are increasingly adopting a holistic care approach that combines medication, exercise, diet, and meditation. This shift toward a more informed and empowered patient is helping improve quality of life and overall care management.

Legislative Wins

The Parky Charter (UK): Advocated for five essential needs for Parkinson’s patients, pushing policymakers toward tangible support measures.

National Plan to End Parkinson’s Act (US): The first federal legislation aimed at addressing Parkinson’s comprehensively was enacted, marking a milestone in government commitment.

The Not-So-Good News

Exenatide’s Phase 3 Trial: Hopes for this diabetes drug were tempered when it failed to meet its motor symptom improvement targets.

Annovis Bio’s Buntanetap: While showing promise for cognitive improvement, the drug fell short in addressing motor symptoms.

Limited Focus on Disease Modification: Of 14 ongoing Phase 3 trials, only two target modifying the disease’s progression, highlighting a critical research gap.

Gratitude time!

A huge shoutout to all the amazing individuals and organizations that made 2024 a phenomenal year for the Parkinson’s community! From the trailblazing efforts of Cure Parkinson’s, Parkinson’s UK, the Michael J. Fox Foundation, The Parkinson’s Foundation and NINDS (and many others) to the relentless passion of researchers, activists, and, most importantly, people living with Parkinson’s and their families — this year wouldn’t have been the same without your dedication. You’ve made waves, sparked hope, and shown the power of teamwork. Here’s to more breakthroughs and joy ahead! ?

My YOPD Story by Swati Singh

Tue, 07 Jan 2025 20:07:56 GMT

Hi, I’m Swati. I’m a software engineer, a daughter, a wife, and a mother to a 12-year-old boy. I’m also someone living with Young Onset Parkinson’s Disease (YOPD). This is my journey.

I lost my sense of smell years ago. I don’t even remember when it happened—it became a normal thing. We used to laugh about it, never imagining it could mean something serious. Even when I read that it might be linked to Parkinson’s, I dismissed it. After all, Parkinson’s was an “old person’s disease,” or so I thought.

A few years later, things began to change. My body felt stiff, my right wrist hurt, and I had pain in my leg when I walked. I blamed my desk job and thought a little exercise would make it better. But it didn’t. Slowly, everything became harder—my body felt heavy, and my movements became frustratingly slow.

When the pandemic hit, working from home made things worse. The tremors that had been mild became stronger and spread to both hands. Suddenly, even simple tasks felt impossible. I had to rely on my family for everything, and that broke me inside. I started consulting doctors over video calls, but no one could figure out what was wrong. They all thought it was cervical spondylosis or other common issues. I tried medication after medication, but nothing helped.

Deep down, I knew something wasn’t right. But I never imagined it could be Parkinson’s. There was no family history, and I was still young. How could this happen to me?

Finally, we met a neurologist in person. The moment he saw me, he said it was YOPD. I couldn’t believe it. We argued with him, hoping he was wrong. But a brain scan confirmed the diagnosis.

Hearing those words felt like my world collapsed. My family was devastated, but they stayed strong for me. I, however, retreated into myself. I stopped meeting friends, going out, or even taking care of myself. I felt angry, frustrated, and helpless. My once-active, optimistic self had disappeared.

I was overwhelmed by thoughts of my son. He was so young—how could he understand what was happening to his mother? I worried about how my condition would affect him, my family, and my job. I felt like I was losing everything that defined me.

For a long time, I thought Parkinson’s was just about constant hand tremors. I didn’t know it could mean so much more—stiffness, slowness, and the emotional toll it takes. But as I learned more, I started to see stories of people like me. They were thriving despite YOPD. Slowly, I realized that if I kept asking why this happened to me, I would only sink deeper into misery.

It took nearly two years to adjust my medications and regain some control over my life. Physiotherapy, yoga, and meditation became my anchors. Gradually, I started feeling like myself again. I could work, take care of myself, and even laugh.

Connecting with support groups and reading about others’ journeys gave me the courage to keep going. I saw that I wasn’t alone in this fight and that life didn’t have to stop because of YOPD.

Today, I’m still learning to live with this condition. Each day is a fight between me and YOPD. The days YOPD wins over me are getting lesser now. I have accepted it as a part of my life. Thanks to my family for encouraging me. I am a blessed person with sensitive people around me.

YOPD may be part of my story, but it doesn't define who I am!

My learning from this journey...

Never ignore the signals your body gives you—your health should always come first.
Lean on your loved ones and let them support you; you don’t have to face challenges alone.
Stay connected to your community. Finding people who understand your struggles can bring strength and hope.
Have faith that even in difficult times, life will give you the tools and support you need to endure.

What Science Says: Latest on Parkinson's Research, Pharma and Trials

Tue, 17 Dec 2024 17:24:39 GMT

Each year, the International Parkinson and Movement Disorder Society (MDS) hosts its Congress, which brings together medical professionals from all over the world who are focused on researching and treating Parkinson’s disease and other movement disorders. This year, the 2024 MDS Congress took place in Philadelphia, PA, from September 27 to October 1. Below, some key research updates presented at the event, particularly those related to clinical trials in Parkinson’s.

Trial on Parkinson’s and Cognition: A Phase 2 Randomized Clinical Trial of TAK-071, an Acetylcholine M1 Receptor Positive Allosteric Modulator, in Parkinson Disease with Cognitive Impairment.

TAK-071 is a molecule designed to boost the activity of muscarinic receptors, which interact with acetylcholine, a brain chemical crucial for motor control. Acetylcholine also plays an essential role in cognition and balance.

This phase 2 trial looked at whether TAK-071 could improve both walking and cognition in people with Parkinson’s who have cognitive impairments. While the drug did not improve walking, it did show promise in improving cognitive function and was generally safe and well-tolerated.

Key Takeaway: TAK-071 could potentially be useful in improving cognitive function in people with Parkinson’s, though it didn’t have an effect on walking.

Trial on a New Carbidopa/Levodopa Formulation: A Post Hoc Efficacy Analysis of Phase 3 Trials of Continuous Subcutaneous Foslevodopa/Foscarbidopa in Patients with Parkinson’s Disease.

A new subcutaneous (under the skin) formulation of carbidopa/levodopa, recently approved by the FDA, was analyzed in this abstract. Data from two clinical trials, involving a total of 385 people with Parkinson’s, were combined. Results showed that this new treatment improved motor function, daily activities, sleep, and quality of life compared to the standard oral version of carbidopa/levodopa.

Key Takeaway: This newly FDA-approved subcutaneous carbidopa/levodopa formulation offers a new treatment option for people with Parkinson’s experiencing fluctuations between "ON" and "OFF" time, and it may improve motor control, daily activities, and sleep compared to the oral version.

Trial on Adaptive Deep Brain Stimulation (DBS): Adaptive vs Conventional Chronic Deep Brain Stimulation: Results from a Randomized Pilot Trial in Parkinson’s Disease.

Deep Brain Stimulation (DBS) is a common treatment for Parkinson’s, where electrical impulses are delivered to certain areas of the brain. Adaptive DBS, a new version of this technology, can sense the brain’s electrical activity and adjust the stimulation in real-time to improve its effectiveness. In this study, 15 people with Parkinson’s were given both adaptive and conventional DBS to compare their experiences. Although motor scores were similar, 90% of patients preferred the adaptive DBS.

Key Takeaway: Patients preferred adaptive DBS over conventional DBS, and this could become a more personalized treatment option in the future.

Trial on Antibodies to Slow Parkinson’s Progression: Effect of Prasinezumab on Parkinson’s Disease Motor Progression in a Long-term Open-label Extension of the PASADENA Trial.

People with Parkinson’s have clumps of a protein called alpha-synuclein in their brains, and these clumps are thought to contribute to the disease. Prasinezumab is an antibody designed to bind to alpha-synuclein and help remove it. The drug was tested in the PASADENA trial with people who had newly diagnosed Parkinson’s and mild symptoms. Although the trial didn’t meet its main goals, it showed some improvements in motor function. A long-term extension of the trial further showed that patients receiving the antibody had slower progression of motor symptoms compared to a control group.

Key Takeaway: Prasinezumab, an antibody against alpha-synuclein, could slow the progression of motor symptoms in Parkinson’s disease.

Trial on a Cell-based Therapy for Parkinson’s Disease: NouvNeu001, A Phase 1 Stage Chemically Induced Human Dopaminergic Progenitor Cell Therapy for the Treatment of Mid- to Late-stage Parkinson’s Disease (Cai, M et al.)

The Importance of Sharing Other Journeys by Dr. George Ackerman, PhD

Tue, 17 Dec 2024 17:18:24 GMT

In my new book, Voices of Resilience: Conversations with Parkinson's Disease Warriors, Caregivers, and Advocates, I take readers on journeys of over 200 other advocates, PwP (People with Parkinson's), caregivers, and many who inspire me daily.

When my mother passed away on January 1, 2020, due to Parkinson's disease, I set out to advocate in her memory for a cure for all those battling PD today and their families. Two years later, I realized it is no longer only about my mother and me, but how critical it is to be a family around the world together for awareness and hope for a cure. That is when I embarked on my mission to share other incredible journeys of people around the globe.

I have interviewed over 1,000 individuals for Parkinson's awareness and am still going. All are free at togetherforsharon.com, and the book is now available in color through the website for order. It focuses on specific journeys and will be a several-book series.

Some interviews include an up-close and personal discussion on advocacy and awareness with:

Dan O'Brien, DOB Parkinson's Charity

Mark Milow, Parkinson's Advocate

Philip Ommen, Parkinson's Positivity

Ali Blevins, Poets with Parkinson's

Esther Labib-Kiyarash, On Advocacy

Rachelle Smith-Stallman, Dance Beyond Parkinson's

Neil Russell, Ran From London to Barcelona for PD Awareness

Melissa Marie Livingston, Young Onset Parkinson's Disease

Megan Taye, YOPD Love Letters

Today, the only journey that breaks my heart is the one I am unaware of. So together, let's share these journeys and ensure no one ever feels alone in this fight because I can fight… I will be right by your side until the cure is at all our doorsteps globally.

Stand together, keep fighting, and never give up!

All proceeds go directly back to the PD community and organizations listed at togetherforsharon.com.

Voices of Resilience: Conversations with Parkinson's Disease Warriors, Caregivers, and Advocates – Book I
https://www.togetherforsharon.com/my-book-voices-of-resilience/

Voices of Resilience Book II
https://www.togetherforsharon.com/book-voices-of-resilience-ii/

The Power of Improv and How It Improved My YOPD by Mother Nature (Karen Patterson)

Tue, 17 Dec 2024 17:13:21 GMT

To be clear, before last year, I had no experience with Improv. Like most, I grew up watching the early models, never dreaming I would be capable of doing such a thing.

Now, I don't ever want to be without it. Learning how to say "yes, and" to what life has to offer is giving me back some of the 'people skills' Parkinson's Disease (PD) robbed me of. It is breaking me out of social isolation and re-teaching me how to get in touch with the 'people person' I used to be.

Socializing became awkward with PD. Making connections with a team of supportive people while learning Improv games is the best medicine I've found yet. The more I learned, the less I focused on the negative aspects of my symptoms. I've learned to roll with whatever body part is acting up that day. Yes, and I take all those skills with me. I collect the songs, smiles, and lessons. I keep them close in my bag of tricks. I take them out when paranoia and frustration sneak in. Those thoughts of uncertainty often happen around pill time—an experience I call dosage anxiety—periods when my internal tremor can cause severe self-doubt and worry about the unknown.

The lessons we learn in Jam for Joy are specifically designed to help with these 'off' times. We work hard and play hard. We share our frustrations and lean into each other's unknowns. We learn and grow together within the safe space we co-create at will, readjusting the games as needed. We support each other with smiles and laughs and wish each other well until we meet again.

All this has made a significant difference in my symptoms. For several years, my most obvious symptom was jaw and mouth tremors, causing the all-too-common symptom of drooling at the most inopportune times. Little by little, over the past 12 months, that annoying chattering in my head is gone. Yes, and I suffered from that for the better part of 5 years.

My overall symptoms have improved in part because of the constant reminder of 'Yes, And' instead of 'Yes, but'. 'Yes, and' I can change how I look at that long walk, that life challenge, that new task I've never tried before. Attitude is everything. 'Yes, And' definitely gives me a head start on pushing past the obstacles; 'Yes, but' would have prevented me from ever trying.

Most of all, I'm learning to accept the things I can't change. Total acceptance allows me to be myself with no regrets. Letting my hair down with a great team of people who are all there for the same reason: to have fun in a place we all belong. Cultivating hope while practicing to live in the present, with full knowledge that I'm no longer alone. Along with the reassurance that in a few short days, our group will meet, play, laugh, and sometimes cry again.

Another miracle I've experienced: For at least 5 years, I wasn't able to type more than a couple of paragraphs at a time without extreme pain. It took a couple of months of fumbling and bumbling during my first round of the Cinema Therapy class last fall. Little by little, Dianne Brambell, Michael Quaglia, and Robert Cochrane witnessed my typing improve. Following my bliss, just as Joseph Campbell suggested, made that much of an impact on my life and my symptoms. Turning me into walking, talking, and typing proof of how the magical power of improv has changed me for the better.

Please check out www.yesandexercise.org and learn how the words 'Yes, And' can help you change your life too.

An Update on Motorvation Foundation's Uganda Project by Nathan Lee Ward

Tue, 17 Dec 2024 17:05:44 GMT

Our incredible PD Team from St. Cyprian High in Uganda is heading home for their two-month Christmas break, and I couldn’t be prouder of them. These students live on campus for months, often only seeing their families during extended breaks. It's truly inspiring to see how excited they are to share what they've learned about martial arts and Parkinson's with their loved ones back home.

Today, they celebrated their year-long journey to Yellow Belt in ITF Tang Soo Do and their official status as Parkinson's advocates for Uganda with an all-American pool party! The dedication and passion these students have shown is admirable. They've worked hard in their training (far longer than any yellow belts normally would) and embraced the responsibility of raising awareness about Parkinson's in their community. Their commitment is a testament to their strength of character, resilience, and the impact they will have on the stigma of PD in Uganda.

As they go home to their families, I am grateful for each of them. Through this journey, they've shown me what it truly means to persevere and uplift others. In a year full of personal challenges for me, they have been a Godsend, a redirecting light through each stumble, and I am so thankful for the spirit and dedication they bring to my life.

The progression of this project, from a small conversation between friends so many years ago about how to impact the culture surrounding PD in Uganda through youth martial arts training to a standing program primed to continue impacting for years to come, is humbling. I’m so thankful for all of the help I’ve received along the way. Specifically, Darbe Schlosser (Motorvation Foundation), Jim Kroeger (Main Project Funder), Martin Magumbe (St. Cyprian High), Kabugo Hannington (Parkinson's Si Buko Uganda), Jerry Dollinger Jr. (Flushing Karate), and the International Tang Soo Do Federation.

The next step in this project is to expand into other schools, utilizing the continued training and leadership skills of these students as a venue for broader cultural change within Uganda.

Connecting people and providing a transformative shared experience through the power of martial arts is what it's all about! What a beautiful journey this is turning into. Stay tuned!

To learn more, visit MotorvationUSA.com/project-uganda

The Gift of Acceptance by Dr. Robert Cochrane PhD

Tue, 17 Dec 2024 17:00:32 GMT

I had the gift and honor of recently being the keynote and emcee of PMD Alliance's All In Summit in Austin, TX. The theme was support—and within that, two fascinating ideas: 1) rebranding Parkinson's disease to help us get what we need to live our best and 2) learning to accept the current base reality of PD. Part of that reality is accepting there currently is no cure. Another part is remembering that the decisions we make every day—physically, socially, emotionally, and spiritually—deeply affect how well we will live with PD. That's acceptance.

Acceptance is a journey, not a destination. For those living with Parkinson's disease (PD), it is a path, at times, littered with loss, adjustment, and unexpected growth. For many, it begins in the shadow of denial, where trembling hands or slowed movements are first ignored, rationalized, or hidden. But denial, while momentarily comforting, is a trap. It isolates, creates shame, and blocks the path to the profound gift acceptance offers: freedom.

True acceptance is not resignation. It is an act of courage—a declaration that life, though altered, can still be exciting, creative, and profoundly worth living. It empowers individuals with PD to step forward, not defined solely by their diagnosis but by their humanity. Acceptance reclaims identity from the grip of stigma and fear, opening doors to connection, joy, and purpose.

Through the lens of my work with the PD community, I've witnessed the transformative power of storytelling and improvisation. These tools, deeply rooted in our neurological wiring, invite participants to embrace unpredictability, connect authentically, and celebrate their strengths. They bridge the gap between external perceptions of PD as solely a "movement disorder" and the internal struggles of those living with it—shame, frustration, and the fear of not belonging.

Acceptance doesn't erase the challenges of PD, but it illuminates a path forward. It transforms isolation into belonging and despair into possibility. In a world where denial often dominates, embracing acceptance fosters resilience—not just for those with PD, but for everyone. Together, we thrive when we see one another fully, when we accept what is, and when we act with compassion to create what can be.

Let us all accept the gifts of support and celebrate the stories that bring us together. One way to do that is at our Christmas Movie Hero's Journey every Friday through the holiday season. It's a free, fun way to explore the stories that help shape this season. ALL are welcome. Register and find out more here: https://www.yesandexercise.org/christmas.

Hallucinations and Delusions in Parkinson's by Dianne Bramble

Tue, 17 Dec 2024 16:55:39 GMT

It's hard enough to have Parkinson's. We deal with tremors, stiffness and rigidity, depression, and anxiety, and then we can add things like dementia, hallucinations, and delusions. As if we didn't have enough to deal with! Hallucinations and delusions are scary things to think about.

You are more likely to experience these things the longer you have PD, have dementia or memory problems, and some medications can cause them. A hallucination is when a person sees, hears, feels, smells, and even tastes something that isn't real or that other people aren't experiencing. (Parkinson's UK)

About 20-40% of people with PD will have hallucinations or delusions. They can also experience illusions—seeing things that are there but not as they appear. An example of this is clothes in a closet looking like people. There is also something called delirium. This is reversible, and it involves attention and concentration. Both or one of these are altered and can lead to changes in behavior and thinking. It usually develops quickly and resolves after treating the underlying condition, like an infection. (Parkinson's Foundation)

A delusion is a strongly held thought or belief that isn't based on evidence. They can include paranoia, jealousy, grandiose beliefs, and wrongly identifying places and objects. (Parkinson's UK)

We've already established that experiencing a hallucination or delusion is genuinely frightening. You can experience several types of hallucinations. Auditory and visual hallucinations can be the scariest of them. Auditory hallucinations are things you hear, but other people around you cannot. These can be voices, music, doors opening and closing, etc. Visual hallucinations are things like seeing people, animals, or anything you can see in real life or dreams. No one else in the room can see them. Tactile hallucinations include things like the feeling of bugs crawling on you. You can feel like someone or something is near you when there is nothing there. (Parkinson's UK)

Experiencing a hallucination for the first time is remarkably frightening and confusing. If you start to hallucinate, you should tell your neurologist/doctor/movement disorder specialist so that they can help determine what's causing them and help either manage them or get rid of them. If you experience a hallucination, try not to panic. Take some deep breaths and tell yourself that you will be okay. Hallucinations cannot hurt you or others, and they will pass. Keep a diary of when they happen and give that information to your neurologist. There are some things that you can do to help.

Focus your attention on an activity to distract yourself from the hallucination. This can be anything like reading, doing a puzzle, watching TV, or playing a video game. Engage with the hallucination—write about it, draw it, or talk about it with someone. Practice breathing techniques like box triangle breathing. Exercise. (Parkinson's UK)

You don't have to let hallucinations control you. Like PD, we have the choice to control it or not. You don't have to do this alone. There are groups, places, and therapists who can help. Reach out, and don't go through this alone. You are not crazy, and it's not your fault.

Delusions are the other issue that we may experience. Aren't we lucky?

They can be more challenging to deal with than hallucinations, and they may involve the people you love. If you experience paranoia, you might think that someone is trying to hurt you in some way. You may also think that people are conspiring against you in some way. You may experience jealousy regarding a spouse or other people close to you. You may think your spouse is having an affair. You may experience grandiose thoughts and think you have superpowers or that you have a relationship with a famous person. You may not recognize the people and objects around you. (Parkinson's UK)

Delusions are very problematic for those who care for us. We may not realize that we are experiencing them. It's essential for those who care for us to know what delusions and hallucinations look like so that if we can't tell our neurologist, they can. If you're fortunate, you can experience both hallucinations and delusions. (Parkinson's UK)

Other things we can do to help ourselves are:

Meditation

Create a Good Memory box or book

Get as much sleep as you can (I know, that's not easy)

Improve lighting to reduce shadows

Your diet is also very important—Eat healthy meals and snacks!

Talk to your loved ones—They want to help. (Parkinson's UK)

All in all, it sucks to have PD, and the chance that we might experience hallucinations and/or delusions makes it even worse. However, we must remember that we are not alone on this journey. We are a strong, loving, supportive community, and we are in this together. There are so many of us that you can reach out to. This disease can be brutal, but it can also lead to many positive things. So, take this article as it was meant to be taken—informative and, I hope, not too scary. I am here for you, as are many other people. Don't be afraid. Be informed.

Dianne Bramble is a Registered Nurse in Ottawa, Ontario, Canada. She left nursing and got her certification in Health Coaching, Cognitive Behavioral Therapy, and Personal Training. Dianne's focus is on people with chronic conditions like Parkinson's. She's 56, married with two kids, a dog, and a horse. She was diagnosed with Parkinson's in September 2013. Her blogs will focus on mental and physical health.

Neuro Ninja by Stephen E. Green

Mon, 16 Dec 2024 21:39:13 GMT

It was a casual remark made by a good friend over lunch that got me started. After 12 bumpy years of Parkinson’s disease (PD), I completed deep brain stimulation (DBS) surgery at Mount Sinai West in New York. I quickly saw improvement in my dyskinesia, dystonia, and cognition. My good friend Gary remarked in amazement at the improvement created by the pulsing electronic device buried in my chest, “It’s like you’re some kind of superhero who gained his powers through DBS!”

I was inspired. Over the months that followed, I developed a relatable comic book character who is perfectly fictional: the superhero with Parkinson’s disease, NeuroNinja. He gains powers in a freak collision between an MRI machine and a quantum computer. Despite his many new powers, the one foe he cannot overpower is his Parkinson’s! Like many of us, he is “unsteady and yet unshakable” in his commitment to the Parkinson’s community.

Over time, NeuroNinja learns to use his symptoms to shake up his enemies. Still, he may be defeated by his many symptoms. Thankfully, when NeuroNinja runs into trouble, he can regain his powers by being surrounded by the Parkinson’s community.

NeuroNinja faces many opponents, including Miss Folding (AKA misfolding proteins), who turns folding paper (origami) into dangerous weapons. He also battles Brain Fog, the brutish Rock Steady boxer.

In my excitement, I was motivated to create a script for the first issue, the origin story, instructions for visuals, and a clear picture of the finished product. I then recruited a talented comic illustrator to draw keyframes.

In November, I created a Kickstarter crowdfunding project to raise sufficient backing to fund illustrations, printing, and marketing. I was so gratified to receive the backing of 53 members of the Parkinson’s community. More importantly, more than 1,000 people have visited the site on Kickstarter. I am very grateful to all who backed our project and are helping to bring this comic book to life, particularly our talented illustrator. We are working on creating the finished NeuroNinja Episode #1: The Origin Story.

This project has kept me alert, engaged, and excited. I think and dream about NeuroNinja.

I do not sponsor major research like Michael J. Fox or achieve athletic feats like Jimmy Choi. In our own way, we are hoping our NeuroNinja Comics can shed light on and lift the Parkinson’s community. I also hope to partner with a Parkinson’s organization that shares our message and seeks a unique way to raise funds. Parkinson’s advocacy can take many forms, and we each can take a stand and remain “unsteady yet unshakable!”

Yes, I met my goal on Kickstarter. I am very appreciative to the entire Parkinson’s community.

What Science Says: Latest on Parkinson's Research, Pharma and Trials by Beatrice Zatorska, Founder and CEO of PD Buddy App

Thu, 07 Nov 2024 19:22:46 GMT

Exenatide Falls Short: What's Next for Parkinson's Breakthroughs?

Recently, we received the long-anticipated results from the Phase 3 Exenatide trial, which tested the diabetes drug exenatide (Bydureon) for Parkinson’s disease. Unfortunately, the trial did not achieve its primary goal of improving motor symptoms, leaving us with 14 clinical trials in Phase 3 for Parkinson's, only two of which target disease modification, with the remainder focused on symptom relief.

According to the “Hope List” compiled by Dr Kevin McFarthing, which tracks Parkinson’s research worldwide, only two other drugs remain in Phase 3 with the potential to disease modification: Annovis Bio's Buntanetap and Ambroxol, a repurposed over-the-counter cough medicine.. Although there are additional drugs in earlier phases (Phase 2 and 1), they remain years from completion. However, we hope to learn soon if these two disease-modifying treatments meet researchers' expectations and could eventually make a meaningful impact for people with Parkinson's.

What Happened with Exenatide?

The Exenatide-PD3 study showed no significant difference in the progression of symptoms between participants taking exenatide and those on a placebo. This trial, conducted in the UK with 194 participants over 96 weeks, tested the drug's ability to slow Parkinson's progression but did not produce the desired outcome.

What Are the Two Other Drugs in Phase 3?

Buntanetap

In July, new data from a Phase 3 trial revealed that buntanetap, developed by Annovis Bio, showed promising results in improving motor function in Parkinson's patients diagnosed more than three years ago and those experiencing balance and gait issues. After six months of daily treatment, the drug halted cognitive decline, even showing improvements in patients with mild dementia. Buntanetap works by reducing toxic protein clumps tied to neurodegenerative diseases, and the trial confirmed it as safe and well-tolerated.

Earlier, Phase 1/2 trial data laid the foundation for this Phase 3 trial, showing buntanetap's ability to outperform a placebo in enhancing cognitive and motor skills in Parkinson's patients while also reducing overall disease severity on the MDS-UPDRS scale. Additionally, treatment lowered levels of TDP-43, a harmful protein buildup similar to alpha-synuclein in Parkinson's. Based on this Phase 2 data, the FDA provided positive feedback on the company's plans to pursue a Phase 3 trial for buntanetap in patients with later-stage Parkinson's.

Ambroxol

The next announcement on the Phase 3 clinical trial of ambroxol as a treatment for Parkinson's disease is expected this autumn. Led by Professor Anthony Schapira at University College London (UCL), the trial has faced delays due to necessary drug reformulations and finalising contracts with research centers. This two-year, placebo-controlled study will involve 330 participants across 10-12 sites in the UK, with a focus on whether ambroxol can slow Parkinson's progression.

Ambroxol, commonly used as an over-the-counter cough medicine, has shown promise in early trials due to its potential to enhance the enzyme GCase, which aids in breaking down protein clumps associated with Parkinson's. In a Phase 2 trial, the drug increased GCase levels, reducing toxic protein buildup in cells, which is a known factor in Parkinson's neurodegeneration. If the ASPro-PD trial confirms that ambroxol can slow Parkinson's progression, there will be a concerted effort to make the treatment available as soon as possible.

More PD News Snapshots

Data from Landmark Michael J. Fox Foundation Study Shows Impact of Promising Parkinson's Therapy

In October 2024, Roche announced promising results for a new therapy, prasinezumab, which may help slow the progression of Parkinson's disease. Data from the Parkinson's Progression Markers Initiative, a long-term study by The Michael J. Fox Foundation, showed that patients treated with prasinezumab had at least 40% slower disease progression. This therapy targets a brain protein linked to Parkinson's and showed particular benefits for motor symptoms. To further explore its potential, Roche has launched the PADOVA trial with over 500 participants, bringing hope for new treatments and, eventually, a cure for Parkinson's.

New 24-Hour Parkinson's Treatment Approved by FDA: What You Need to Know About VYALEV

The FDA has approved VYALEV™, a new treatment for adults with advanced Parkinson's disease that provides continuous relief from motor symptoms for 24 hours through an under-the-skin infusion. This innovative medication combines levodopa and carbidopa, two common ingredients used to manage symptoms like tremors and stiffness, and it offers steady symptom control without the ups and downs associated with traditional oral medications. Designed for those who experience fluctuations in their symptoms, VYALEV™ has been shown in clinical trials to increase "on" time (periods of good movement) by an average of 2.72 hours without troublesome side effects. The treatment is delivered via a small pump, allowing for personalized dosing throughout the day and night. While it does have some mild to moderate side effects, VYALEV™ represents a significant advancement in managing Parkinson's disease and improving patients' quality of life.

Ophthalmic acid as an alternative to dopamine in motor control

A team at the University of California, Irvine, has discovered that a brain molecule called ophthalmic acid can act like dopamine in controlling movement, offering a promising new direction for treating Parkinson's disease. This molecule binds to calcium-sensing receptors, improving movement in Parkinson's mouse models for over 20 hours—far longer than the 2-3 hours typical of the current dopamine-based therapy, L-dopa, which also causes side effects with long-term use. This breakthrough suggests that dopamine isn't the only neurotransmitter managing movement and opens doors to treatments that could work through a previously unknown pathway. Researchers are now exploring ways to increase ophthalmic acid levels in the brain as a potential alternative therapy.

Cancer Drug Shows Promise in Blocking Harmful Protein Spread

Researchers have found a protein called Aplp1 that helps harmful proteins associated with Parkinson's disease spread in the brain. Interestingly, a cancer drug already approved by the FDA can block this process in mice by targeting a related protein called Lag3. When both proteins were blocked, the spread of these harmful proteins was reduced by 90%, potentially preventing damage to the brain cells responsible for movement. This suggests that the cancer drug could be repurposed to treat Parkinson's disease. The next steps involve testing this treatment on mouse models for Parkinson's and Alzheimer's, which could lead to new therapies to slow down these diseases.

High-intensity Exercise May Reverse Neurodegeneration in Parkinson's Disease

A recent small study suggests that intense exercise could not only slow down but might also reverse brain damage caused by Parkinson's disease. While earlier research showed exercise improves PD symptoms, this study is the first to demonstrate actual changes in the brain. Ten participants with PD completed a six-month high-intensity aerobic exercise program, and brain scans revealed healthier dopamine-producing cells that communicated better after the program. Dopamine is crucial for movement control, and these findings indicate that exercise may directly protect and repair brain cells rather than just treating symptoms like current medications do. This study highlights the importance of exercise in managing Parkinson's, suggesting it could have a more significant impact on brain health than previously thought.

$50M raised to advance brain stimulation device

Inbrain Neuroelectronics has raised $50 million to advance its brain-computer interface (BCI) technology, aiming to improve treatments for neurological conditions like Parkinson's disease. Using ultra-thin graphene electrodes, this BCI can adaptively stimulate specific brain areas based on real-time activity, aiming for better outcomes with fewer side effects than current deep brain stimulation (DBS) devices. The technology, recognized as a breakthrough device by the FDA, has shown promise in clinical trials and is also being tested for other conditions like epilepsy and brain cancer. Partnering with Merck KGaA and Imec, Inbrain plans to scale production and further its impact in neurology.

Cerevance's drug solengepras helps reduce off-time

In a recent trial, Cerevance's new oral drug, solengepras, showed promising results in improving the quality of life for people with Parkinson's by significantly reducing "off time"—the periods when symptoms like tremors and uncontrolled movements return despite medication. The Phase 2 trial included 141 patients who added solengepras to their standard Parkinson's treatments, with those on higher doses experiencing a reduction in off time by up to 1.6 hours, along with increased "on time" when symptoms were better managed. The drug also helped reduce sleepiness, was well tolerated with only mild side effects, and is currently being further tested in ongoing trials.

Right-Sided DBS: Effective Parkinson's Treatment Without Speech Loss

A recent study suggests that stimulating only the right side of the brain with deep brain stimulation (DBS) may help alleviate movement problems in Parkinson's disease without significantly impacting speech abilities. In contrast, left-side stimulation was associated with more noticeable speech difficulties. This finding indicates that unilateral DBS—stimulating just one side of the brain—could be a safer option than the traditional bilateral approach, which encourages both sides. Conducted by researchers at the University of Alabama at Birmingham, the study is part of the NIH's BRAIN Initiative and points to a promising, less invasive DBS approach that may help Parkinson's patients manage motor symptoms while preserving cognitive functions like speech.

Potential of Device-Assisted Therapy for Advanced-Stage Parkinson's Disease

At the 2024 International Congress of Parkinson's Disease and Movement Disorders (MDS), researchers presented promising results from the DIVE-I trial, a small study exploring a new device-assisted therapy for Parkinson's disease. The trial began in 2020 and included 12 patients experiencing movement issues. It also tested the safety and effectiveness of delivering dopamine directly to the brain via a small pump. This approach was found to control movement symptoms without causing dyskinesia, a common side effect of oral treatments. Dr. David Devos, co-founder of InBrain Pharma, highlighted the potential of this less invasive method to stabilize dopamine more effectively.

Parkinson's therapy Bemdaneprocel shows benefits for up to 2 years

Data from the Phase 1 exPDite trial of bemdaneprocel, a new cell therapy by Bluerock Therapeutics, showed promising results for Parkinson's disease. The therapy, which transplants dopamine-producing cells into the brain, helped patients experience more time with controlled motor symptoms ("on" time) and reduced "off" periods when medication is less effective. High-dose patients saw a 1.8-hour increase in on time and a 1.9-hour decrease in off time. Safe and well-tolerated up to 24 months post-surgery, even after stopping immune treatment, bemdaneprocel will now move to a Phase 2 trial for further study.

Department of Defense-funded research may lead to breakthroughs for Parkinson's neuropsychiatric symptom

Around half of people with Parkinson's disease (PD) experience neuropsychiatric symptoms like memory issues, sleep disruptions, depression, anxiety, and even hallucinations. Psychology professor Christopher R. Bishop and his team, supported by a four-year, $3 million Department of Defense grant, aim to uncover the causes behind these symptoms in PD patients. Their research, in collaboration with experts at Binghamton University, the Barrow Neurological Institute, and the University of Illinois, investigates how changes in serotonin-producing neurons contribute to these issues. They found that in Parkinson's, these neurons can start producing dopamine erratically when treated with L-DOPA, leading to serious side effects. This research seeks to pinpoint effective treatments, including existing medications, that could target serotonin-related challenges in PD. Their work highlights how Parkinson's impacts not only movement but also cognition, emotions, and sleep to enhance life quality for those affected.

New Data Demonstrate Substantial Therapeutic Potential of Capsida's IV Gene Therapy for Parkinson's Disease

Capsida Biotherapeutics has reported promising results for its gene therapy CAP-003, aimed at treating Parkinson's disease with GBA mutations (PD-GBA). Delivered via a simple IV, CAP-003 boosts levels of the GCase enzyme—deficient in many with this genetic mutation—by up to 250% in the brain's key areas, which is essential for brain health. Unlike other treatments, it also avoids side effects in the liver and other sensitive organs. With no safety concerns seen in animal studies, Capsida's CEO says CAP-003 could offer a safer, one-dose approach to slowing Parkinson's progression, with human trials expected in 2025.

New Parkinson's Drug VQ-101 Shows Promise in Early Human Trials

Vanqua Bio's experimental drug, VQ-101, shows promise as a treatment for Parkinson's disease based on early human studies. This oral medication activates an enzyme called glucocerebrosidase (GCase), which helps remove harmful protein clumps in the brain associated with the disease. In a Phase Ia trial, VQ-101 activated GCase by over 75%, exceeding expectations, and it was well tolerated by participants with no serious side effects. The drug successfully reached the brain, suggesting it could potentially slow or stop the progression of Parkinson's in future trials.

Choosing Joy and Gratitude: Navigating Young Onset Parkinson's with Kindness and Resilience by Carl Beech

Thu, 07 Nov 2024 19:18:19 GMT

Here are my thoughts on choosing joy and gratitude when facing a currently incurable disease and how we should treat all people.

This isn’t a pity party column.

It’s a genuine way to highlight the syndrome. A progressive and degenerative one that is, in many ways, a brutal journey.

It’s also to share what I’ve learned about how to deal with tough times.

For me, the outward-facing symptoms aren’t the worst. The weird walk, effect on voice, tremors, slow movement, etc., aren’t pleasant, but they aren’t the worst things.

It’s the hidden ones. The symptoms no one sees that you wrestle with daily or periodically. From bladder and bowel issues, struggles with swallowing, fatigue, insomnia, severe apathy, and anxiety. All of these are unseen by people but are very, very real.

After an intense period of travel and relatively high demand, combined with grief and a virus, I feel done in.

My natural optimism is replaced by a deep apathy that can be so severe it’s as if you don’t exist. Totally numbing. I also get something that was previously alien to me;

Anxiety - a clinical symptom of PD due to the disruption to pathways in our brains.

You know it will pass, and this isn’t you but the disease. However, no matter how much you tell yourself this, it’s tough. Brutally tough.

I’ve learned that you can’t think or pray your way out of it. You have to make conscious choices.

Read on.

The ongoing depletion of dopamine neurons has a catastrophic effect on people with PD.

In my case, the very rare young onset variety typically comes with more dystonia (persistent cramp), depression, and dyskinesia (involuntary movements).

When I feel like this, it’s hard to smile. This is not just due to the face masking (rigid face muscles that make you look angry or moody) but also because nothing really feels good.

In fact, due to the lack of dopamine, you get very little reward hits due to the lack of the hormone that gives you them. So, even good things feel neutral.

So what do I do?

I have to make conscious choices to be joyful and to choose gratitude.

When you do this by disciplined choice, gradually, things change.

I also have to rest.

This condition doesn’t make life easy for family, work colleagues, and friends, either. I’m grateful for those who understand and give me extra grace in these times.

I’ll never throw in the towel; that’s not my style. Sometimes, though, in order to replenish, I need to go dark.

If I go quiet or am slow to reply, now you know why.

I’m not being rude or slack; I’m simply dealing with the fight of my life. Usually, it only takes a day or so to pull out of the nose dive.

Finally, here’s my advice to everyone, including me, when dealing with people.

Be kind. Give the benefit of the doubt. Believe the best. You don’t know what someone is going through.

I wouldn't be here without you by Robert Cochrane

Thu, 07 Nov 2024 17:52:22 GMT

One of my Cinema Therapy students, Terri Van Bibber, said those beautiful words to me after doing her fantastic presentation at the Parkinson's Association of Northern California (PANC) conference on Saturday, Sept. 28, 2024. Terri presented as Joy - literally. She took our Turning Parkinson’s Disease Inside Out class and, from that work, came up with an unexpected way to share her story. It’s important to understand that standing on a stage in front of more than 600 people dressed as an animated character was not in her realm of possibilities when she began the course. A long series of “yes, ands” led her to this place.

Terri did a great job of making sure she surrounded herself with friends. In this case, she brought Sadness, Anxiety and Fear on stage with her. “What kind of friends are these?” you may be asking. Some of the best, if you learn how to listen and relate to them, rather than stigmatize and avoid them.

Just as the character of Joy learns in Inside Out, Terri has learned in her Parkinson’s disease (PD) journey that refusal and denial, while human, are quick paths to theParkinson’s prison - a place where people become stuck in the words “I can’t” or “I shouldn’t”. This is isolation, an absolute killer, especially when it comes to PD.

So what does leaning into and sharing our emotions and stories do? It gives us language where we can identify those hidden fears - the ones that have us falsely believing “it’s just me”. Having language and understanding how to present them via storytelling allows us to express ourselves and connect with others. Until there’s a cure, we have each other. And we’re better together.

Terri took the seeds of several ideas she learned about within our community, then cultivated and co-created them into this staged reality with the help of others. I was honored to be one of her co-creators. She received an opportunity to share her story from PANC. But rather than do a “death by powerpoint recitation of the facts” (you know the ones I’m talking about), she presented her beautiful and colorful imagination and creativity. She worked with local actors to embody the emotions so many of us hide inside for everyone to see. She showed us there’s more to Parkinson’s. And just as she wouldn’t be here without me, I wouldn’t be here without her, or all of you.

To learn more about Cinema Therapy and the classes you can take part in, please click here.

My Personal Trainers by Diane Bramble

Thu, 07 Nov 2024 17:47:03 GMT

As promised, I am focusing this article on my Personal Trainers, Kate Spack and Mike Barrs. In a previous article, I shared my frantic search on the Internet for exercises I could do for my Parkinson's Disease (PD). It was three years before Boxing 4 Health opened its doors, and I didn’t want to join a big gym as I was self-conscious about my symptoms.

I phoned around to see if any of the gyms would send a Personal Trainer to my house. Luckily, I found one. They sent me this bubbly, positive, incredible young woman named Kate Spack. The moment I met her, I knew I was in good hands. She has a gentle yet inspirational aura (if you will). I now count her and her partner in life and business, Mike Barrs, as good friends.

Kate quickly discovered the exercises that would help me the most. She has been my Personal Trainer for 10 years, and Mike has been my other Personal Trainer for two years. They modify my exercise program according to how I feel and whether my symptoms have progressed. They have improved my balance, strength, endurance, flexibility, and mobility. I genuinely believe that I would not have been in a place to join the boxing gym if I hadn’t had them in my corner.

I see them twice a week, and I will continue to do so for as long as I’m able or when a cure for PD is developed. Next time, I’ll delve into the world of running and Parkinson’s.

Dianne Bramble is a Registered Nurse in Ottawa, Ontario, Canada. She left nursing and got her certification in Health Coaching, Cognitive Behavioural Therapy, and Personal Training. Dianne’s focus is on people with chronic conditions like Parkinson’s. She’s 55, married with two kids, a dog, and a horse. She was diagnosed with Parkinson’s in September 2013. Her blogs will focus on mental and physical health.

Decision Making: The Art of Mutual Respect by Esther Labib-Kiyarash

Thu, 07 Nov 2024 17:38:57 GMT

“To make decisions about the care the physician recommends and to have those decisions respected. A patient who has decision-making capacity may accept or refuse any recommended medical intervention.” – Patient Right #4.

I use this right a lot. Initially, when I was diagnosed with Young Onset Parkinson’s Disease (YOPD), I felt ignorant and reluctant to have opinions. After all, my Movement Disorder Specialist (MDS) had spent years studying my condition. He must have seen dozens of cases like mine, and if I just followed his recommendations, I’d be fine, right? But as time went by and our relationship matured, the dynamic changed.

“It’s your body, Esther; you have to make the decisions,” he told me—half out of frustration, I think. He was right. He knows the disease, but he doesn’t know me. He doesn’t know how I feel, what my struggles are, what I can tolerate, or what I absolutely can’t lose. I have the capacity and responsibility to make decisions for myself.

My MDS always says he’s the coach; he gives me the plays, but it’s up to me which ones to run. At first, that was scary, but it became empowering. Sometimes, I agree with what he recommends, and sometimes, I decline. There are no hard feelings. He respects my decisions.

Respect is a word that comes up a lot. Mutual respect is the foundation of effective communication, but it’s frequently lacking in the doctor/patient relationship. I’ve been dismissed, gaslit, and talked down to. I’ve lived and worked with doctors all my life. They are experts in diseases, but I’m an expert in me. Both have value, but I call the shots.

Recognize you’re an expert, take back your power, and give—and expect—respect in return. This is what care should be like.

A New Way of Thinking for the New Year: Embracing Life with Parkinson's by Frank Antonicelli

Thu, 07 Nov 2024 17:31:04 GMT

“Attitude is a little thing that makes a big difference.” – Winston Churchill

As each New Year rolls around, I’m reminded of the opportunities for change and growth in my life. Aside from the standard resolutions many of us tend to make (and often break) such as “I’m going to eat healthier, get more exercise, go to sleep earlier, quit smoking, etc.” what’s helped me most is to focus more on changing the way I think and cope when dealing with what life’s thrown at me, as in my case, a life with Parkinson's.

For 2025, my goal is to not let negative thoughts and fears overtake me. I’m not going to let myself worry more than I have to.

Navigating the Emotional Landscape

In the 17 years since being diagnosed with Parkinson’s, I’ve often grappled with anxiety and uncertainty about the future. The fear of what’s to come can be overwhelming and I've often asked myself questions like “What if my symptoms worsen?” or “What if I lose my independence?”, even during periods when I felt my symptoms were relatively stable.

I've found that this constant worry can cast a pretty dark shadow on the hope and positivity I strive to cultivate. It’s easy to allow fear to take the wheel, steering us away from enjoying the present moment.

Letting Go of Fear

This New Year, I’m committed to letting go of fears about things that haven’t yet happened. Life with Parkinson’s is unpredictable, and I know it doesn’t come with any guarantees. I’ve learned the importance of rolling with the punches, and when real challenges arise, that’s when I’ll summon my strength to rise to the occasion and keep moving forward.

I’ve come to realize that fear doesn’t serve me well in this journey. Instead, I’ll focus on my resilience and the things I still cherish—my relationships, my passions, and the small joys and moments that each day brings.

Building Connections and Community

I also plan on continuing to connect with others navigating their own Parkinson’s journeys. I believe there’s incredible power in sharing our experiences and supporting one another. If you’re also looking to connect with others or seek support, I encourage you to reach out. There are many great people and resources available, so you don’t have to navigate it alone.

Together, let’s embrace 2025 with a renewed mindset, focusing on strength, community, and the moments that make life beautiful, despite the challenges we face.

Guarding Your Digital Life: Internet Safety for the Parkinson's Community by Karen Patterson

Thu, 07 Nov 2024 17:26:47 GMT

Internet trolls are everywhere, a term I learned from my kids. They are most often used to describe those who spread hate on the internet. I'm more worried about people being taken advantage of. It's a real problem, and I'm afraid our shared condition has made us look like easy targets.

I avoided social media for several years and just recently reentered the cyber world to connect with the Parkinson's community. It's been both comical and annoying how persistent people can be. I've been approached by people messaging saying they were Michael J. Fox, Paul Macartney, and someone claiming to be a crowned prince. All are asking for a video call or other personal information. Fortunately, I wasn't born yesterday. Delete and block work just fine.

These people are desperate and don't have anything better to do than prey on people they see as easy targets. Some of these unwanted attempts to contact me have come through other friends' story feeds. That is a dirty trick. Don't be fooled. Again, I am on social media to connect with my growing network of friends within the Parkinson's community. And to spread awareness. It is common knowledge that the elderly are also at risk of being targeted by this kind of fraud. We, the people with PD. Might also look like easy targets. Most of us are very proud of our advocacy, and we display it openly on our media pages.

Yes, and these despicable people are convincing. They steal logos from the real deals and have no qualms about using banners and logos from reputable companies to make themselves look legitimate.

So please be careful who you trust on the internet. Only accept friend requests from people you know and double-check with others if possible. Never give out any personal information, including obvious ones. Don't believe everything you read on the internet.

Social media is a great place if you're careful. It's better to be safe than sorry.

The Emotional Toll of a Loved One's Diagnosis by Sharon's Son, George

Thu, 07 Nov 2024 17:20:50 GMT

The emotional toll as a caregiver was devastating. I went through a variety of emotions, uncertain of what the future would bring for my mother, who was diagnosed with Parkinson's Disease. At the same time, I was unsure of my own future—what life would be like as a caregiver or how I would cope with the potential loss of my best friend and mother.

My mother had Parkinson's for 15 years, but I wasn’t aware until the seventh year, when her symptoms became progressively more difficult for her to hide from the family. I feel she may have tried to conceal her diagnosis because she didn’t want to burden us, which would never have been the case. Or perhaps she simply wasn’t fully aware of or didn’t understand the progression of the disease herself, as even medical professionals seemed unsure of what the future would look like.

Even today, as an advocate for a Parkinson's cure, I find it hard to relive memories of my mother's struggle. The final four years as her caregiver were the toughest for me. Anxiety, sadness, stress, depression, and hopelessness crept into my life, but I tried to hide these feelings from my mother, whom I felt needed only care and support during her struggles. I often say that I wouldn’t be the man I am today without my mother's sacrifices. She was a teacher with a master's degree who gave up her career to raise my brother and me.

I wouldn’t have achieved most of my academic success and professional acknowledgments without my mother cheering me on, from the good times to the tough ones. She was always by my side, encouraging me 24/7. She was and always will be an inspiration. At times, she sacrificed her health but kept her Parkinson's diagnosis from me for several years because she didn’t want to burden the family. Many days, I wish she had shared it earlier, and it makes me wonder if there was something that could have been done to slow the progression of the disease at that time.

Every journey is unique, but every person fighting this disease inspires me to keep pushing for a cure. Advocacy helps me cope, and my mother lives on through everyone I meet. Her legacy, and the lessons I learned from her, continue to inspire me to never forget how important she was—not only to me, but to everyone she touched.

My journey continues today, from being a caregiver to being an advocate. I am still in shock, filled with questions about what happened, why it happened, and if there was anything I could have done differently as Parkinson's progressed so quickly for my mother. We still don’t know why it happened the way it did.

Yet, out of my darkness and loss comes some positives. I've met so many warriors battling Parkinson's disease, heroes I fight alongside across the world to ensure no one is ever alone. I never want anyone else to go through what my family and I did, and I will continue to fight for a cure, now more than ever.

Finding Flow Amid Struggle: Embracing the Journey with Parkinsons by Nathan Lee Ward

Thu, 07 Nov 2024 17:13:02 GMT

Speaking from my experience as a person with the disease and someone who has worked with others who have it, PD affects so much: rhythm and cadence, tempo and affect volume (vocal and movement), and control. We consider these listed in musicality but not as often in the context of our movement.

How does loss of rhythm and cadence impact control over the body as a PD Athlete?
It removes" flow" and strips you of any pattern, sequence, or tone to ascribe your movement. It causes you to feel "herkie-jerky," akin to a child pressing keys on a piano for the first time. There may be an occasional semblance of pattern for movement, but smoothness or that feeling of "just right" will escape you.

With PD, we seem to be absent of flow but not removed. We witness this in athletics and hear it in concerts of artists the same, those who are in a "slump" or going through "it." They may go without a catch, hit, or goal or have a concert that doesn't resonate with the audience. They have lost the flow.
But, as with professional athletes, we have the opportunity and obligation to rise to such an occasion and regain every ounce we can. But how?

Self-exploration, play, joy, fun, and adaptation.
Indeed, we are enjoying a sled ride of descending adventure. But as we glide on down, may we glance to each side and take in the beauty around us.

Each journey is different, unexpected, and challenging. But if we choose to experience it as such, it's much like a crescendo amid a beautiful melody: powerful and flexible, fulfilling and cleansing.

Now, I challenge you to hear the music of your life and your soul more than you listen to what ails you. Find your flow and live.

Exoskeletons for Parkinson's Disease

Tue, 05 Nov 2024 18:05:38 GMT

Interest in "exoskeletons" has been growing rapidly, with daily advances in the field offering new hope for patients with walking impairments. However, the high complexity of these devices also means they come with limitations, such as high costs and difficult maintenance, making them less accessible. Moveo aims to change this with their innovation: the soft exoskeleton ExoBand. It is a passive (no motors or batteries), wearable (1 lb) device that works like a walking brace, featuring a belt and two leg loops. It’s designed to store energy during the first phase of walking (hip extension) and then release it during the following step: this boosts the movement of the hip flexors, improving the ability to walk more effectively and more freely.

In people with Parkinson’s and other neurological conditions, poor gait control often leads to shorter walking distances, increased fatigue, and a higher risk of falls. This reduced mobility can limit social interactions, exerting a detrimental impact on psychological well-being. The ExoBand aims to break this cycle by improving walking ability.

Clinical studies (freely available here) have shown the ExoBand’s effectiveness, demonstrating reduced energy expenditure, better walking patterns, increase in wakling distances, and improvements in balance and stability for individuals with neurological disorders, including Parkinson’s. The device has also shown a positive impact on gait rehabilitation sessions. People can walk faster, better, and for longer distances.

Since receiving first regulatory approval in 2020, more than 1,200 ExoBand devices are in use across Italy, Europe, the UK, the USA, and Australia, making it a widely trusted solution for improving mobility.

Fausto Panizzolo, the inventor of ExoBand and CEO of Moveo, along with Claudio Semplicini, neurologist and Moveo Medical Director, introduced ExoBand to the YOPD network during a video conference, which is available here.

Breaking Barriers: Unmasking Parkinson's Misconceptions in the Digital Age by George Ackerman

Tue, 15 Oct 2024 15:14:39 GMT

Misconceptions of PD

The younger generation has brought Young Onset to light through social media. There have been misconceptions that Parkinson's disease is the "old man's disease," which is entirely false, misleading, and wrong. Young-onset is a reality; more voices are reaching borders and breaking leaps and bounds worldwide. Technology has changed how we think, view messages, learn stories, and break barriers to advocacy. Every one of us has a story, but in 2024, we can share it instantly, reaching far beyond any conception of the meaning of social media that could have ever been predicted.

The downside of social media

Many rely on social media to earn a living. Those in the Parkinson's community can stream live on multiple sources to gain followers, advertise, and get support to pay for their medications. Sadly, the same social media sites that can help us can also hurt us. Some receive rude and unprofessional responses; others question the purpose of a post, and at times, that may have us second-thinking that post we just sent moments ago.

In one scenario, an individual who inspires me daily was banned on TikTok because a few people reported that she was drunk or on drugs when, in fact, she had Parkinson's tremors, and the fight began to have her reinstated. Thankfully, she was, but everyone's voice in the Parkinson's community matters. These all too often social media trolls, misconceptions, or just lack of awareness of Parkinson's has its pitfalls. The good news is we can fight them, advocate, and join in bringing attention to the negatives and flipping them into positive lessons.

George Ackerman, PhD from Brooklyn, NY, now in Florida, lost his mother, Sharon Riff Ackerman, due to the progression of Parkinson's Disease on 1/1/2020. To honor her, he began TogetherForSharon® to spread awareness. Today, https://www.togetherforsharon.com/ reaches many, where George interviews people from the Parkinson's community.

Finding Balance: Embracing Life's Challenges with Strength and Hope by Nathan Lee Ward

Tue, 15 Oct 2024 15:07:46 GMT

I wrote this in 2011, before my official diagnosis. I was a 25-year-old kid fresh off a 5-year-long burnout cycle as a 911 dispatcher, with calls gone bad echoing through my head. I admire my mentality then and sometimes imagine myself as that naive young buck if not to escape this occasionally, to remind myself that everything is ultimately okay.

They say all things in nature must be leveled out or balanced. Take, for example, the ocean's tide; when it's high tide here, it's low tide in Asia. You can see it in something as simple as the seasons. In summer, it's warm, so inevitably, winter must be cold. This concept echoes through every aspect of humanity and seems to be accepted in all cultures.

In Chinese tradition, you see the ying and the yang, the perpetual cycle of good and evil. In Egyptian lure, we hear of your entire life being measured against the weight of a feather to determine your placement in eternity. Native American religions surround the idea of the balance of nature and teach the consequences of tilting the scale too far.

I ventured to Cancun with my local church when I was only fourteen, where I helped renovate a dilapidated church and rebuild a family home. This is when I first realized the magnitude of this balancing act. On the strip, you have paradise, where people from around the world come to relax and let loose. Then just on the other side of a thin bay lives the heart of Cancun, the people.

In contrast to the lavish hotels on the strip, most Cancun-ians live in shacks tightly packed into communities that are intertwined by crater-filled dirt paths. The people lucky enough to have jobs get to spend their entire day serving tourists with more money than they will ever have. You would think this life would be like hell on Earth, right? Wrong, these were some of the happiest people I have ever met. The scale for them has tilted away from wealth and prestige, causing the other side of the scale to rise. The folks I met had close-knit, loving families and never-ending smiles.

I've been thinking about this a lot lately. Life has been good to me. From childhood to current years, I have been and remain blessed. I love my life and wouldn't change a single day. In being so blessed, I find myself what would be a cursed man. I've been recently diagnosed with Parkinsonism. A blanket term that includes such wonderful things as Parkinsons Disease (PD), Essential Tremor, Multiple System Atrophy, and many other degenerative diseases. My neurologist (the best around), Dr. John Goudreau of MSU) is one-by-one ruling out all other disorders and is heavily leaning on a diagnosis of, and currently treating me for, PD. At my age, such a diagnosis is rare and takes several years to be monitored as no definitive testing is available. So, in the meantime, my days are slowly becoming longer and harder, and my body seems to be turning against me. I do everything I can in a day to hide my shaking hands and retain the strength to do all that is needed of me.

But you see, I came to a realization long ago. I know that no matter how hard my life may get, in some way, I will be compensated. I hear people say they can't imagine what I must be going through, or that they feel for me. Well friends, save your pity for a weaker man. I have history and nature on my side as evidence that my life will only get better if it's going to get worse. And you know what? I'm okay with that.

As a friend what I want all of you to know is the following: Life has its struggles, hard times, bad luck, and downright horrible situations. But no matter what religion you follow or whatever you believe, one thing will remain true for both of us.

Everything's okay.

Nathan Lee Ward, a black belt since age 32 in Tang Soo Do, is a Certified Personal Trainer, Nutritionist, and Corrective Exercise Specialist, with a focus on Parkinson's exercise.

With three years training under Darbe Schlosser of Motorvation USA, he's a unique blend of goofball and empathetic soul.

My Crazy World of Fitness by Dianne Bramble

Tue, 15 Oct 2024 15:00:59 GMT

I promised a while ago that I would talk about all the things I do to keep fit and to slow down the progression of Parkinson's Disease (PD). So here it goes. I’ll list each activity and spend time on each one in separate articles:

● Boxing

● Personal Training

● Running

● Equestrian Riding

Boxing has become a passion of mine, and I’d like to back up a bit to explain how I came to this passion.

When I was diagnosed in 2013, my neurologist didn’t tell me to exercise. In fact, he didn’t tell me much of anything. After having my pity party for a couple of days, I threw myself into discovering everything I could about PD. I kept coming across articles about the benefits of exercise, particularly boxing.

I searched for a boxing studio in Ottawa, but there wasn’t one available. I emailed every Rock Steady business nearby to see if they had plans to open one here. They said yes! While we didn’t end up with them, Boxing 4 Health has been amazing. It has helped me get in the best shape I’ve ever been in, and anecdotally, my symptoms are not advancing very fast.

I’ve met and made many friends through boxing, although I lost one last year. Boxing gives me the opportunity to let it all out. That bag doesn’t stand a chance!

I don’t remember how long I have been a member, but I’m so glad I am one. I go four times a week, and I wish I could go more often. As far as exercise goes, this is so fun that you don’t even feel like you’re exercising.

Next time, I’ll focus on my personal trainers. They’re awesome!

Dianne Bramble is a Registered Nurse in Ottawa, Ontario, Canada. She left nursing and got her certification in Health Coaching, Cognitive Behavioral Therapy, and Personal Training. Dianne’s focus is on people with chronic conditions like Parkinson’s. She’s 55, married with two kids, a dog, and a horse. She was diagnosed with Parkinson’s in September 2013. Her blogs will focus on mental and physical health.

It's hard to say goodbye. The A's have left the building. by Karen Patterson

Tue, 15 Oct 2024 14:55:49 GMT

No one could say it wasn't a beautiful day. I retraced the path I traveled so many times as a child, crossing the bridge with an uncertain knowledge of where I was. The left leg challenged my steps. It was getting close to pill time, and I knew the Cochranes, both father and son, were waiting inside.

When I reached the all-too-familiar gate, it felt like home. I waded my way through the crowds with the flow of traffic, knowing my target would be just to the right—Section 126, the very same section where my family held season tickets so many years ago….

Back in the 1980s, when the A's were in their prime, many of the parents and grandparents of young A's fans were teenagers. Robert Cochrane and I were two of them, making this the perfect time and event to meet face-to-face.

We made it. I was so excited I didn't know what to say or do. The emotions all around us were waves of everything from tears to frustration. Yet overall there was a sense of community I wasn't prepared for. It's been over 30 years since my parents and I held those season tickets. Sitting there with the superstars was overwhelming in all the best ways. Anxiety didn't tag along for this long-awaited ride. I wasn't symptom-free by any means, but I was too happy to live in the moment to care.

The day went by too fast. It was so great to hang out with Dan while Robert navigated the crowds to bring his dad the last meal they would share in the Coliseum. It gave me the chance to thank him. He was confused at first, and I had a hard time hearing him. He asked, "What for?"

I told him thank you for everything. For everything he's done. For his willingness to go out to the ballgame one last time. And above all. I thanked him for those two wonderful kids he made. Because without them. For now, Christine's music has also become a lifeline in times of family stress. I wouldn't have also made it to that very historic game.

I'm unsure what he thought of it, but I believe he understood. I wanted to tell him that for a long time. I'm so glad the stars lined up in just the right order—Destiny's call was met.

As for the tiny little Sherpa guy on the screen, who was larger than life, folks, after playing Mirror for a year, I was mistaken for his sister a couple of times. Ok. I can live with that. Wonder Twins activate!

Add in the energy of a sold-out stadium full of people who all had one common goal. Let it be known that we are not pleased with the rally cry: "Sell the team! Sell the team! SELL THE TEAM!"

We were sad to see the day end. It was hard for everyone to exit the coliseum for the last time. Wonder twins did indeed activate because soon afterward, Robert came up with a plan. A grand plan to keep the A's in Oakland while at the same time finding Las Vegas a team of their own. You can read more about that here: www.yesandexercise.org. Under the blog section. The title is Oakland and Las Vegas: Come Together. If you believe the Athletics should stay in Oakland there is a link to a petition at the end of the blog. Also check out the Boys of Summer documentary series and see how Parkinson's awareness and MJB started it all. Please join us in our fight to continue our legacy. Not just for our families but for all the other families who love their green and gold. I'm holding on to hope that the last game can also lead to new beginnings. Dare to Dream.

Karen Patterson, diagnosed with Young-Onset Parkinsonism in December 2016, embodies The Voice of Mother Nature. As a poet advocating holistic healing, she fights for a cleaner Earth. Her approach includes life-saving tea, shaping stories one cup at a time.

Un-Diagnosed: The Hidden Truths of Parkinson's and the Voices that Matter by Esther Labib-Kiyarash

Tue, 15 Oct 2024 14:47:19 GMT

When I heard about Joseph's announcement that he had been "un-diagnosed" with Parkinson's, I was shocked. Until I wasn't. You see, my background is in healthcare risk management and compliance, where mistakes occur in hospitals. Every complaint, error, and variance ends up on the desk of someone like me. No diagnostic test is perfect or without error. I could bore you by explaining sensitivity vs. specificity, but we all became experts during the pandemic. Ever take a test when your entire family is sick, and one of you tests negative while all the rest test positive? There you go.

Joseph's story is more than a tale of diagnostic error, although that is important too. Research has shown that perhaps a quarter of people with Parkinson's are misdiagnosed in the first year. The Dopamine Transporter Scan, or DaT, is often touted as the test for Parkinson's, but it is simply another tool in the toolbox; it is not perfect. As we move toward the era of biomarker tests—blood, spinal fluid, etc.—it is essential to remember that all tests can and do fail some percentage of the time. But this is not just a tale of diagnostic error. It's a case study of an experience that so many of us share: doctors who simply don't listen to us, who dismiss our feelings and insights into our conditions, making us doubt our own bodies. How one doctor's opinion influences the next and the consequences that follow can be devastating, yet it's often treated as just a statistical anomaly.

Joseph's story is also a cautionary tale about another often glossed-over issue that can leave a trail of destruction in its wake: dopamine agonists and impulse control issues. Long the stuff of whispers and shame, these experiences are now increasingly being shared by brave individuals like Joseph Schweinzer. A velvety-voiced 47-year-old family man and long-time member of the YOPN community, Joseph was diagnosed in 2020 amidst the global pandemic. He had no history of the issues some of us are warned about—gambling, sex, or shopping. No way. Never. But the dopamine receptors said otherwise, as did his credit card bills.

You can hear the rest of Joseph's story on our upcoming podcast.

This month's YOPN Living Well Starts podcast marks a new direction, perhaps even the beginning of something quite unique. It's real talk about the things that no one else is discussing. I hope you will listen and let us know what you think. Feedback is always appreciated. And you know what we say: "Once young onset, always young onset." You are always a part of this community, Joseph. The YOPN podcast is available for free on the YOPN website, Spotify, and Apple.

Esther Labib-Kiyarash, MSHA, CPHQ, a former hospital Quality Director turned Parkinson’s Ambassador, resides in West Texas with her husband, a Hospital Pharmacy Director, and their two children. With 20 years of marriage, she passionately advocates for Parkinson's awareness.

My 10 Rules to Live By by Frank Antonicelli

Tue, 15 Oct 2024 14:37:06 GMT

Living with Parkinson's Disease for the past 17 years has certainly shaped my life in an interesting way. I've been fortunate enough to reflect and discover some guiding principles that help me stay positive, find happiness, and lead a fulfilled life. Here are my ‘rules to live by’:

1. Life is a Marathon, Not a Sprint

I’ve embraced the art of being "patiently persistent"—moving forward even when progress seems small. This mindset keeps me grounded and reminds me that this is where my wins and lasting success come from.

2. Enjoy and Embrace the Journey

I feel gratitude for every small victory, every peaceful moment, and every smile along the way. I’m especially thankful for the incredible people I’ve met who have supported and inspired me. Parkinson’s has brought unexpected gifts in these meaningful connections and moments.

3. Stop and Smell the Roses

I make it a priority to slow down and appreciate the beauty around me. During one of my daily bike rides, I stopped and took in the fresh air, the cool breeze, the birds chirping in the trees, and the feeling of my heartbeat as I came to a rest. These moments keep me grounded and grateful.

4. Consistency over Speed

Living with Parkinson's requires adaptability and a shift in mindset. I know I can’t move as quickly and nimbly as I used to, and that’s okay. I remind myself that consistency, not speed, is what matters. It’s a ‘Use It or Lose It’ approach—staying active and persistent ensures that what I set out to accomplish will get done, even if it’s on my own timeline.

5. Create Your Happiness and Well-being
While the love and support of others are invaluable, I believe that true happiness originates from within. I focus on cultivating my own inner peace and contentment, even in the face of the challenges that Parkinson's brings.

6. You've Got to Lose to Know How to Win

Every loss or setback has been an opportunity for growth. Parkinson's has taken many things away from me, but on the flip side, it’s also given me new perspectives and a mindset for focusing on the positive in every situation that comes my way.

7. Do Unto Others as You Would Have Them Do Unto You

I try my best to treat everyone with the kindness I would want in return, recognizing that we all have our struggles, even if they aren’t visible.

8. Don’t Think About the Past or Worry About the Future—Live in the Present

Whether we like it or not, the past is unchangeable, so I make sure to focus on what’s happening today.

9. All You Need is Love

At the end of the day, it’s love that keeps me moving forward—love for myself and for others. It’s this love that reminds me I have the support and care to take on any hurdle that comes my way.

10. Harness the Power of Faith
Faith is the foundation of everything I do. For me, starting and ending each day with God at the center brings a deep sense of peace and strength, reminding me that I’m never alone on this journey. But faith doesn’t have to be tied to religion—it can simply mean trusting in something greater than yourself. It’s the belief that no matter how difficult the road ahead may seem, there’s always hope and purpose.

These guiding principles are not just for navigating life with Parkinson’s, but for life as a whole. They help me find balance, stay hopeful, and approach each day with gratitude.

My YOPD Experience - Part 3 by Jenny Newman

Tue, 15 Oct 2024 14:27:41 GMT

Living my Best Life!

I just finished a video call that I’ve been both anxious and excited about all week. Now that it’s over, my heart rate has slowed down, thankfully. The call was with a representative from the Michael J. Fox Foundation (MJFF), a staffer from Senator Van Hollen’s office who works on health legislation, and two other women who also have Parkinson’s. Our goal was to encourage the senator to increase funding for Parkinson’s research. I had three minutes to tell my story. My voice broke a few times with emotion as I recounted the shock of diagnosis and what it is like to manage symptoms every day. I saw genuine concern and empathy in the staffer’s eyes, which felt like a good sign that my message was getting through. We need more funding and support from Congress.

This was the third such call that I’ve participated in with the MJFF. The first was last year when we spoke with staffers from Congressman Sarbanes’ office encouraging him to co-sponsor the National Plan to End Parkinson’s Act, which passed unanimously in both houses and was signed into law by President Biden on July 2, 2024. The second call took place two weeks ago, also with Sarbanes’ office, but this time to ask for additional funding for research.

It’s been such an honor to participate in these calls and the experience has been incredibly empowering. It feels like I’m part of something bigger and that I’m making a difference—even if it sounds a bit cliché. The MJFF representatives I’ve worked with have been both warm and supportive. I’m eager to find more opportunities like this and feel like I’ve finally discovered my true calling – advocacy work!

Writing these articles for The YOPN Times has had the same effect. It’s been so therapeutic for me to share my story, so thank you for reading this!

I’ve been an editor and publisher my entire career and continue to work full time. I’m not sure when I’ll scale back, but I could see that happening in the next few years.

In the meantime, I stay very active. My husband and I bought a used tandem bicycle that we’ve dubbed “Frankenbike” due to all the mismatched components we’ve installed, and we love taking it out on different trails. I ride in the back, focusing on pedaling and spotting wildlife (still hoping for a bear sighting!). We also love kayaking on local lakes and rivers, where we often see ospreys, bald eagles, and other birds. I attend classes at the gym 3-5 times a week and just participated in my first Rock Steady Boxing class (love it!).

On my “to-do" list is to participate in a Parkinson’s walk next year to raise funds for the cause. Our incredibly talented daughter, an artist, is already designing our team shirts -- squirrels riding a tandem bike with the one in the back (me!) holding a martini in one hand and a shaker in the other. Our team name will be “Shaken, Not Stirred,” and I can’t wait for it!

Lastly, I’ve been more open lately with friends regarding my diagnosis. As many of us have discovered, it’s difficult news to share. There’s an unfortunate stigma with this disease that I don’t quite understand, yet I feel it in my bones. Seeing recent news reports speculating that the president might have Parkinson’s just adds to that feeling. It was made to sound so scandalous, like if you have Parkinson’s then you are useless and inept.

But that attitude can take a hike! I’m not letting Parkinson’s slow me down (well, I am slower but you know what I mean). I’m going to fight it every step of the way with my family and friends by my side. In other words, I’m committed to “Living Well” as our YOPN slogan suggests. I hope you are too, my friends, and I wish you all the very best!

Jenny Newman was diagnosed with YOPD in 2020. She works full-time as a publisher and webinar producer. She and her husband Ernie love to travel and are taking their 11th cruise this fall. Jen stays active with biking, kayaking, yoga, pilates, and spin classes.

Dear Mel, What do you think it means to be in love? by Melissa Livingston

Tue, 15 Oct 2024 14:20:54 GMT

Dear Mel,

What do you think it means to be in love? I'm sure it's different for each person, but I am curious to know what that means to you.

Your friend,

Eros

Dear Eros,

My expectation of love and what I need from it has changed as I have aged and learned many lessons about love and relationships that I didn't realize were out there when I was younger.

I admit I wanted that fairy tale experience—to be swept off my feet by an attractive and charming partner who would make it their mission to ensure that I felt complete, loved, and happy.

It seems so simple, yet now, at this stage of my life, I realize how unreasonable and unrealistic my expectations were.

In my opinion, love isn't something we can orchestrate or even achieve on our own. It requires mutual attraction, sure—stimulating those neurochemicals we were all born with that lead to that feeling in the beginning, that new relationship energy that feels like love but isn't.

I believe that love is intentional. Love takes effort. It's not just something you find; it's something you work to build and maintain. Love takes patience, kindness, and faith—it has to because love is not one-sided. To love, we must also be willing to learn to communicate because no two people give or receive love the same, so we must know the differences to work towards and around them.

Love is a partnership that always takes some fixing but can produce the sweetest and most magical moments of joy life can offer.

The fairytale lies in the effort.

Love is life, and life is love.

XOXO

-Mel

Melissa Livingston, a true New Yorker now residing in Texas, passionately advocates for the Parkinson's community. Following her diagnosis in 2020, her Instagram journey with #parkinsonslookslikeme gained widespread attention, uniting millions

Affectionately known as Mel, she actively engages with her audience across multiple platforms, including Instagram (@missmliv), Facebook (Melissa Marie Livingston), and TikTok (@UndeniablyHoneybee).

What Science Says: Latest on Parkinson's Research, Pharma, and Trials by Beatrice Zatorska

Tue, 15 Oct 2024 14:06:57 GMT

Ultrasound and light therapies to investigate targeted treatments

A groundbreaking study by scientists at Nottingham Trent University will explore the use of ultrasound and light therapies to investigate targeted treatments for Alzheimer’s disease, dementia, and Parkinson’s disease. This first-of-its-kind research aims to determine whether treatment can be delivered to the brain using specialized microbubbles. The team hopes to revolutionize how these neurodegenerative diseases are treated by harnessing non-invasive techniques to bypass the body’s natural barriers.

Levodopa taken at bedtime help with quality sleep

Taking levodopa before bedtime may reduce the frequency and duration of nighttime awakenings in people with Parkinson’s disease, though these improvements might not be noticeable to the patients themselves.

This conclusion comes from a small study involving patients in the early to middle stages of the disease, in which an actigraphy device was used to monitor their sleep-wake cycles. The researchers emphasized the importance of using objective tools to measure sleep quality, particularly when assessing the effects of medications.

Implants reduce symptoms by reading brain activity

A new development in computer interface technology offers hope for Parkinson's patients through what could be considered a "smart pacemaker" for the brain. Deep brain implants that adaptively adjust electrical stimulation based on an individual's neural activity have shown significant promise in enhancing therapy for Parkinson's disease.

Up to 56% of l-dopa fails to reach the brain

The effectiveness of L-dopa, a common medication for Parkinson's disease, varies greatly between patients due to differences in their gut bacteria. Normally, L-dopa needs to reach the brain to be converted into dopamine, which helps manage Parkinson's symptoms. However, certain gut bacteria can break down L-dopa before it gets to the brain, making the treatment less effective.

Researchers are testing FDA-approved compounds that target dynamin-related protein 1 (Drp1), which regulates mitochondrial division, as potential treatments for Parkinson’s disease

Recent studies have linked disruptions in mitochondrial processes to neurodegenerative diseases, including Parkinson’s. Toxic proteins and environmental neurotoxins can interfere with the balance of mitochondrial fusion and division, leading to impaired cellular function and the buildup of harmful protein aggregates—a hallmark of Parkinson’s disease.

1st patient dosed in Phase 2 trial of VTX3232 therapy

VTX3232 works by reducing brain inflammation through the inhibition of the NLRP3 protein, a key factor in Parkinson’s progression. This trial will assess the drug’s safety, tolerability, and impact on disease biomarkers, with results expected in 2025.

CREXONT Now Available Nationwide in U.S. Pharmacies

Amneal Pharmaceuticals has officially launched CREXONT (carbidopa and levodopa) extended-release capsules, now available in pharmacies across the U.S. CREXONT offers a novel approach to treating Parkinson’s disease through an oral formulation that combines immediate-release granules with extended-release pellets, designed to provide a longer duration of symptom control with fewer doses throughout the day.

How a simple worm may hold the key to stopping Parkinson’s

Scientists have discovered a link between how the body manages copper and neurodegenerative diseases like Parkinson’s and Alzheimer’s. Using a gene called swip-10 in roundworms, their research suggests that restoring copper balance could lead to new treatments for these disorders.

In their study, published in the Proceedings of the National Academy of Sciences, the team found that the worm gene swip-10 helps control copper levels. Copper, a vital nutrient, is crucial for brain health as it supports energy production and protects cells from damage. A lack of proper copper regulation in brain cells can lead to the death of neurons, which is seen in diseases like Parkinson’s and Alzheimer’s.

Further research revealed that mutations in swip-10 cause neurons in the worms to deteriorate early, similar to what happens in Parkinson’s disease. The scientists also found that a related gene in humans, called MBLAC1, is linked to certain forms of Alzheimer’s. Mutations in this gene disrupt copper balance, leading to poor brain and heart health.

By supplementing copper in the diet or using a drug that boosts copper levels, the researchers were able to restore cell function and prevent neuron death in the worms. This suggests that regulating copper could be key to treating neurodegenerative diseases.

Beatrice Zatorska is the founder of PD Buddy, a self-care app inspired by science aimed at slowing down Parkinson's progression and improving quality of life. Her motivation to create an app for people with Parkinson's stems from her husband's diagnosis in 2020. She is a passionate science communicator and technologist.

Across the Pond by Carl Beech

Tue, 15 Oct 2024 14:02:52 GMT

Let me introduce you to the world of medication faff (UK slang for hassle) in England.

Recently, following a visit to my new MDS—a geriatrician by trade who sees some with Young Onset dudes (not many, as there are only around 15k of us here)—he decided to move me from Sinemet to Stalevo to try and reduce my off time. For those not in the know, Stalevo contains entacapone, a COMT inhibitor that is intended to stretch the effectiveness of the L-dopa out.

So far, so good. I was excited to try it.

The first glimpse of trouble was the lack of availability.

I'm on a relatively high dose med of 200/50/200. I was previously on 200/50mg Sinemet, but it was felt that with the addition of entacapone, we could reduce the Sinemet slightly.

The hospital pharmacist did a great deal of head-scratching and then sent me away, muttering that he could "rustle something up in a few days." Sure enough, the call came, and I trundled off to the hospital to get my meds. It wasn't Stalevo but Stanek, which is a generic brand. Okay, that's okay as long as we stick to that. However, when it came to putting my next order in (we get 28 days at a time), I was given something called Sastravi. Yet another generic brand. Not only that, it took over ten days to get the meds due to the shortage of medication in the UK. Then I went back to Stanek, and now it looks like I may be bounced over to the preferred brand of Stalevo.

Therein lies the problem. Whilst it's said that the meds are all the same, those of us with YOPD know that the brands are blended differently and can cause trouble with absorption or efficacy. Every brand change has brought with it less on time (which defeats the aim of the change) or has slightly different rates of impact and even side effects.

Some of this is undoubtedly due to the UK's exit from the EU, and I'm sure this will smooth out in time. Some of this, however, is simply the profit margin made by the pharmacy on different brands. Stalevo is too pricey, so they go for the meds that make the most cash, not the ones that will help us the most.

Interestingly, when I read my notes from the consultation, my MDS noted that any generic brand of Stalevo would do. It won't. This highlighted to me the lack of awareness around these details, even amongst the trained and seasoned professionals out there.

In summary, this is an issue that we need to raise awareness of amongst the YOPD community (especially the newly dx) and clinicians.

As for the impact of the COMT inhibitor, I have to say that overall, so far, it's been a good move. However, I've learned once again that in the wild ride of YOPD, you need to be your biggest advocate.

We know our bodies better than anyone - so let's keep beating the drum for what we need, using the knowledge we gain, and raise awareness wherever we can.

Onwards!

Carl Beech (Beechy to his friends but not his Mum). Is married with two adult daughters, a dog, a cat, and a tortoise. He is a volunteer CEO of Spotlight YOPD, a UK nonprofit. Additionally he is CEO of a Community Transformation Charity Center for his day job.

Parkinson's Syndrome

Fri, 04 Oct 2024 18:03:52 GMT

What are the Symptoms of Parkinson's Disease?

Living with Parkinson's disease, especially when diagnosed young, can throw a lot your way. Figuring out what's "normal" Parkinson's and what might be something else can feel overwhelming. That's why YOPN is breaking down the common symptoms of Parkinson's disease in a way that's easy to understand.

Here's the thing: Parkinson's affects everyone differently. You might experience all of these symptoms, some of them, or even none at first. The key is to be aware of what's possible and to talk to your doctor if you notice any changes.

The Most Recognized  PD Symptoms Are Movement Related

These movement related symptoms are most often associated with Parkinson’s Disease.  They are just the “Tip of the Iceberg”

Tremors: This is the shaking you might think of first with Parkinson's. It usually starts in one hand or arm and tends to happen when your limb is relaxed. It might look like a pill-rolling motion with your thumb and fingers.

Slowness of Movement (Bradykinesia): This can make everyday tasks feel like they take forever. It might be hard to get started moving, like getting out of a chair, or your walking might become slow and shuffling.

Muscle Stiffness (Rigidity): This tightness in your muscles can make it tough to move around freely. It can affect any part of your body and sometimes be painful.

Balance and Coordination: Stumbling or feeling unsteady on your feet can be a sign of Parkinson's.

Automatic Movements: (Dyskinesia): This symptom, which is actually a long-term side effect of the medication, presents as wild, uncontrolled movement of the body.

Beyond the Visible Symptoms

While the visible, movement related symptoms are the more recognizable symptoms of PD, most patients report that the hardest parts of PD are the non-movement symptoms that one cannot see.  These include:

Speech: You might start talking softer, slur your words, or hesitate before speaking.
Loss of smell: This is often one of the first symptoms to surface
Sleep Issues- Inability to fall asleep or to stay asleep, REM Behavioral Disorder
Constipation/GI Issues- Constipation causes poor medicine absorption
Anxiety/Depression-As disease progresses, symptoms increase, triggering these emotions 
Cognitive Decline- Occurs in about 30% of patients
Executive Functioning Skills:  Many report the inability to multitask, prioritize and focus
Apathy- experiencing the lack of motivation to get up and go

Remember: This list is not exhaustive, and everyone experiences Parkinson's differently. If you're noticing any of these, talk to your doctor. They can help you figure out what's going on and develop a treatment plan that works for you.

YOPN Joins PMD Alliance to Grow Thriving YOPD Community

Tue, 17 Sep 2024 14:32:33 GMT

“Alone we can do so little; together we can do so much.”

—Helen Keller

We recently shared the news that PMD Alliance and Young Onset Parkinson’s Network (YOPN) have joined forces to offer lifetime support for those living with Young Onset Parkinson’s Disease (YOPD) and their care partners. YOPN, a startup-turned-growing-community, was launched when one woman, Anna Grill, decided that there weren’t enough resources for people with Parkinson’s who looked like her (young, still parenting, at the peak of her career), and so she decided to do it herself. As the organization’s growth began quickly outpacing its bandwidth, Anna felt a strong responsibility to the community to secure a sustainable future for the fast-growing YOPN. We’re eager to expand our joint capacity to meet the unique needs of people who receive this life-changing young onset Parkinson’s diagnosis in the thick of life.

This is the story of how and why we came together.

The first time Anna Grill ever walked into a neurology office 17 years ago, she was 38 years old. She had an appointment with an experienced movement disorder specialist. Anna remembers sitting nervously on the examination table as she waited for the doctor to come in. When the doctor finally opened the door, she stood in the doorway and looked at Anna for what felt like a beat too long. The doctor barely sat down when she said to Anna: “You have Parkinson’s.”

“It was awful,” Anna said. “Before I could even realize what was happening, she had her head in a prescription pad. She handed me the script, said, ‘Go fill this, come back in two weeks. If it works, it’ll confirm your diagnosis.’ I was shocked.” Anna left without taking the script.

Three months later, after getting her young onset Parkinson’s diagnosis from a “more level-headed doctor,” Anna turned to Dr. Google for additional support. But she couldn’t find it. She couldn’t find people with Parkinson’s who looked like her—young, female, a parent and a professional. In fact, she could barely find any resources on YOPD at all.

“Even without any chronic disease,” Anna said, “parents at that period of life are running around with their hair on fire. People with YOPD are often married or have young kids or they’re single and still dating. They’re not going home and putting their feet up after work; they’re getting kids’ lunches ready and going to PTA meetings and they’re in the prime of their careers.” When she looked around at most of the existing Parkinson’s organizations, she couldn’t find anything that spoke to her needs in that stage of life. When she finally got one organization to send her a newly diagnosed packet for people with young onset PD, the first image on the opening page was a silver-haired lady. This just wouldn’t cut it. Anna knew that she and people like her deserved more: to feel seen and supported in their unique needs. She decided to go out and create it herself. Eventually, Young Onset Parkinson’s Network (YOPN) was born.

For ten years after Anna discovered she had Parkinson’s, she and her husband kept her diagnosis to themselves. At the time, Anna was on the fast track as a sales executive at a Fortune 200 company and was the youngest and only woman on the executive team. “I didn’t want another box around me,” she said. “I was the main breadwinner of our family. I was scared of what would happen if others found out.”

And her fears were not irrational. “I can tell you stories about people with YOPD,” Anna told me. “While many companies follow the ADA protections and provide wonderful support and resources to their employees, others, unfortunately don’t follow the rules. I have been told about people who have been unfairly fired after coming out with their diagnosis.” This is why Anna’s commitment to providing safety and security for her YOPN members—a commitment PMD Alliance has fully embraced—is essential to her. By offering a membership structure at YOPN, only those who are registered can join programs; no employer—or anyone not in the YOPN community—can secretly spy on what’s happening.

Andrea Merriam, PMD Alliance’s CEO, knows how critical this is. “We feel that community and socialization is a key component of health and brain health,” she explained. “To be a member of a community, you have to be vulnerable. But to be vulnerable, you need psychological safety.” In other words, community nourishes and fortifies us, but you can’t let your guard down and reap its rewards if you’re worried about being outed. Especially for people with YOPD, Andrea explains, “You still often have your financial future, your children’s college future, your legacy up in the air.” These are high stakes matters.

“Exactly,” Anna said, underscoring Andrea’s point. “That feeling of being in a safe space is really important. Otherwise, you’re not going to join. I went ten years without meeting anyone with the disease. How much better could it have been for me if I had community? By providing safety, we’re bringing people to the table faster and earlier.”

Your diagnosis is your story. You deserve to share it if, when, and how you want. No matter where you are on this journey, we’re ready to meet you where you are.

Long before PMD Alliance and YOPN joined forces, they recognized the value of each organization. “What captured my attention about YOPN,” Andrea explained, “was the ‘for us, by us’ angle. What they were offering wasn’t prescriptive; it wasn’t someone external telling people how to navigate their diagnosis and their disease. It was coming from people who were living it themselves”—for YOPD, by YOPD. “That’s so aligned with PMD Alliance’s culture and values. I always felt, wow, they just get it.”

Anna, too, was impressed with PMD Alliance and its holistic emphasis. “It was important to me to seek out a partner who embraced my vision for the future of YOPN,” she said. “We worked hard to build a safe, supportive, and vibrant community for those with YOPD. From the beginning, we’ve listened to the needs and interests of those living with the disease, and created an energetic vibe that reflects their youth and spirit, and inspires them to thrive beyond their diagnosis. With YOPN, people can connect and share, while knowing they’re in a safe place in a safe community.”

This joining of forces offers both organizations a missing piece, bringing them into a wholeness that will serve the full spectrum of individual needs across the Ecosystem© of Parkinson’s and movement disorders. “It feels like 1+1 =3,” Anna said, describing the amplified power of this partnership. As Andrea said, “This is such a win for all of us”—for PMD Alliance, for YOPN, and most importantly, for the YOPD community.

“We have long been aware of the unique needs of the young onset community,” Andrea said. “And at PMD Alliance, we want to meet people where they are, to listen and ask rather than tell them, This is what we offer. Rather than shoving a square peg in a round hole. We’ve long been aware that their needs are different, that a lot of them are still working, that they have different schedules and need webinar options in the evenings after work, not during the day. With the infrastructure and programs that we had, it didn’t serve those needs.” By joining with YOPN, PMD Alliance can finally make sure that everyone has a space within our community.

This joining of forces also provides lifelong support for people living or loving someone with YOPD. “Once you’re diagnosed with YOPD, we always consider you early onset. But at some point in your journey,” Anna said, “what we’re talking about”—with dating and parenting and navigating a career—“will be less relevant. PMD Alliance will be able to provide additional resources—a full path.” PMD Alliance will be there when you’re ready to learn not just about the unique needs of young people with Parkinson’s, but financial assistance programs, deep dives into treatment options, advanced care planning, and more. We also have an extensive on-demand video library for care partners and, if you’re looking to engage with your community and start your own support group or gathering, we have a robust training program to empower you.

Since its inception, YOPN has been committed to helping people navigate their disease and thrive today. This means offering fitness and nutrition programs, educational workshops, mind-body tools, and connection. Because, for Anna, supporting people with YOPD in living full, joyful lives has not just been a nonprofit motto; it’s personal. “This is a very complex disease,” she said, “and I’m not willing to wait for a cure to be happy. I’m focused on being well today. If you’re not, you’re going to miss out on life.” Anna has always believed that research and finding a cure is vital, but when she started YOPN, she wasn’t sure she could impact research in the way she can impact lives today. “I’m just trying to make the most of what I have to give while I can.”

This sense of living well right now is at the heart of PMD Alliance’s mission, too. There’s a beloved support group leader, Cindy Bittker, and she has a mantra: “Until there’s a cure, there’s community.” This is a pillar of PMD Alliance’s work. “Yes, let’s find a cure,” Andrea said. “I’m so glad there are researchers toiling away. But until they do, there are a lot of people who need help right now. It can be both and. I’m not a Ph.D. researcher; instead of passively waiting for the scientists to figure it out, what can I do? What can we do right now?”

By coming together, PMD Alliance and YOPN have made a commitment to the YOPD community: together, we will continue forging a path for everyone living with the disease, including those who get the words—You have Parkinson’s—at the most unexpected stage of life.

We will listen to your stories and what you most need and wish for. We will see you and seek to meet you where you are.

And though your life may not look like what you imagined, it is still yours—a precious gift. We will walk alongside you, doing everything in our power to help you thrive.

In joining forces, we hope the YOPD community will flourish—not tomorrow; today.

Taking Research to Reality- My Journey on the Pro-PD Plan by Anna Grill

Mon, 26 Aug 2024 15:48:15 GMT

YOPN has had the good fortune of hosting many wonderful guests during our speaker series events. A crowd favorite is Dr. Laurie Mischley.

For those who are not familiar with her, she has been a practicing ND (Naturopathic Doctor) for over 20 years and is the founder of the Seattle Integrative Medicine center in Washington state. What makes her especially relevant to our community is that she focuses her practice and her research work solely on Parkinson's Disease. Based on the results of her many research studies, she is certain that every one of us with PD can positively impact the number of "good years" we have with the disease through exercise and diet.

My Call to Action

They say that a speaker is good if you walk away having learned one new and actionable item. Rating Dr. Mischley on that scale is a ridiculous measurement, as I walk away with 10+ new learnings every time. Yet, I realized that while I love her talks, I've never actually tried her program. Since I'm a "walk the talk" kind of gal, I knew I had to jump in. I also had that annoying 20 lb weight gain that so many women get between the ages of 45-55, seemingly overnight and arriving as stealthy as Ethan Hawke moves in Mission Impossible, (which by the way is mission impossible to lose!)

I knew I had the exercise piece covered. In addition to walking my two goldendoodles every morning for 30-45 minutes, I box three times a week, weight train twice a week and do yoga once weekly. However, my diet had room for improvement. So I set up an intro appointment to jumpstart my journey..

Getting Started on the Plan

Dr, Mischley’s team gave me a list of lab work to be done prior to my first appointment with her in Mid-March. We reviewed the results together. I should point out that Dr. Mischley uses her own “PD optimum ranges" based on her research. For instance, her acceptable level of B vitamins is higher than the typical scale.

My results showed slightly elevated cholesterol and blood sugar levels. That, along with my “slightly elevated” weight gave me pause. Her next statement was surprising- “From a Parkinson’s perspective, cholesterol is neuro protective so I’d much rather you be slightly higher than slightly lower (and of course you want the HDL to be higher and the LDL to be lower) Huh. That’s interesting. She continued on to say "Regarding your weight, I'd much rather you be 10 pounds overweight than 10 pounds underweight with Parkinsons as it's the folks that can't keep weight on who lose strength and have greater risk of falls. So, while you don't want to be drastically out of range, a little elevation is actually a good thing sometimes. Wow that was enlightening!

There were, however, a few things she was concerned about: my inflammation levels, blood sugar and concerns on Vitamin D and B deficiency. She gave me a list of supplements to address some of these concerns that included: Glutothymene (a liquid antioxidant), 2 different B vitamins, and one D vitamin. She outlined a plan that included downloading the free ProPD app. and to strictly follow this eating plan for 90 days. (Please refer to the hyperlinks above for more information on both the app and the eating plan)

Results

While everybody's different, I found it easy to follow and stick to. The most interesting thing to me was that by eating the right foods, I no longer had hunger pains as the sugar levels stabilized in my body and I found myself not snacking all the time. I also believe that eliminating dairy (or most of it), along with eliminating bread and pasta helped in reducing my inflammation and gave me more energy. My mind felt clearer and overall, I felt better.

The results by the numbers look like this: I lost 15 lb., lowered my cholesterol by 20 points, lowered my blood sugar by two points and increased my vitamin levels to Within acceptable levels. I am still working on the inflammatory scores but overall feel much better than I did before I started…

Tackling Parkinson's: 5 Strategies for Goal Setting by Frank Antonicelli

Mon, 12 Aug 2024 20:47:17 GMT

In my journey with Parkinson's Disease (PD), I find myself continually searching for ways to manage and overcome the challenges it brings each day. As many of us with PD know, having the condition is a lot like trying to hit a moving target and trying to

keep up with it requires constant adaptation. As a former competitive athlete, I often look back at the lessons I've learned on the field and have adapted them to my current life with PD, especially with goal setting.

As a teenager in the late 70s/early 80s, I played football at Cumberland Valley High School under legendary coach Harry C. Chapman III. Coach Chapman not only taught me about the game of football, but also valuable life lessons that helped shape my approach to setting goals for myself and reaching them.

Here are 5 goal setting principles I’ve embraced:

Principle #1: Define Individual and Team Goals

Coach Chapman emphasized a team-first mentality and the importance of individuals maximizing their athletic abilities for the team's betterment. He would sit down with each player at the end of the school year and set specific strength, agility and conditioning exercise goals for their summer workout program.

With Parkinson's, I adapted this strategy to include my doctors and support system of friends and family in my health goals. When dealing with specific issues or symptoms, I would talk with my doctors about strategies to feel better, and would then share them with my support system. Communication is key, and over time, I’ve discovered that this practice has really helped unify us as a team and has been incredibly beneficial for my care.

Principle #2: Maintain Consistency and Dedication to Goals

During the summer, Coach Chapman held consistent morning and evening workout sessions every Monday, Wednesday, and Friday, and it was understood that we would attend one session a day. The workout sessions were not easy, but they helped me realize that sustained effort leads to improvement.

For Parksinon’s, my mantra is "Use it or lose it", as I have found out the hard way that if I don't regularly exercise specific dexterous activities, I often lose the ability to do them. This has led me to follow a daily routine of exercises to help maintain my mobility. I’ve found that if a consistent level of effort is directed toward achieving a goal over an extended period, that goal will likely be met. It also helps to have a partner to do these activities with. For example, I have a biking buddy I routinely meet up to take rides with, and we hold each other accountable for getting out there and staying active.

Principle #3: Establish Benchmark Testing and Reporting Procedures

Coach Chapman regularly tested and recorded the team’s progress in key exercises and motivated us by tracking and posting our personal bests for all of us to see. For players who reached their new personal bests, he would mark their stats in his highly sought-after "blue ink." which encouraged us further.

This taught me the importance of recording my own Parkinson's stats, including treatment outcomes, medication efficacy, exercises that help specific symptoms, and more. This practice helps me determine what treatments or medications are working and which aren’t, and to adjust when necessary. I also share this information with my support system, which keeps them informed and allows them to help in the best ways they can.

Principle #4: Create a Culture That Fosters Competition and Teamwork

Coach Chapman would get really fired up when testing/recording players, especially when one of us was attempting a new personal best. His enthusiasm was contagious, often resulting in the entire team gathering around to encourage a player to succeed. His approach created an environment of motivation and inspired us to push our limits and support each other.

I believe a positive mindset can be infectious and help those around you rally in support.

By sharing my victories and gratitude with my support system, we have created our own environment of positivity and motivation. This has helped strengthen our bond and our shared commitment to overcoming PD together.

Principle #5: Persevere, Persevere, Persevere

One of the best messages I learned from Coach Chapman was the power of perseverance. His football program emphasized the importance of perseverance in all activities, both on the football field and in the classroom. I will always remember him phrasing perseverance, along with persistence, mental toughness, hard work, and overcoming adversity.

Parkinson's is a tough opponent that doesn't ease up or back down. This is where perseverance has been a key attribute in maintaining a good quality of life. I hold this message close, as I understand that very little is given to us in life, and most successes result from hard work, persistence and perseverance.

These lessons from Coach Chapman also inspired me to create my own strategies, which led to the creation of an audiobook, "Embracing Parkinson's". In it, I team up with my movement disorder specialist, Joe Green, and we discuss our personal experiences with PD and our game plays for handling the condition. We also dive deep into strategies we developed for stress management, which has been vital in not letting PD get in the way of my personal best.

Coach Harry C. Chapman III's principles and coaching philosophy have had a positive and lasting impact on my life, and for that, I am truly grateful.

Thank you, Coach Chapman, for everything you have taught and instilled in me, and for giving me the tools needed to go head-to-head with my fiercest opponent: Parkinson’s Disease.

– Frank Antonicelli -EmbracingParkinsons.com

A special thanks to my close grade school friends and teammates #13 Harry C. “Four” Chapman IV and #72 Brian “Bull” Bullock for their contributions to the creation of this post.

Harry C. Chapman III

Former Head Football Coach

Cumberland Valley High School

I would also like to acknowledge the countless hours the early 1980's CV Football Coaching Staff -- Coach Harry Chapman, Coach Butch Bricker, Coach Bob Crobak, Coach Ron Audo, Coach Joe Correal, Coach Tom Uhrich and Coach Jim Hess -- invested in teaching young men how to compete and conduct themselves both on and off the football field.

Tips for Travel with YOPD

Wed, 31 Jul 2024 18:59:40 GMT

Travel is a fantastic way for some rest and relaxation. Before you head out for your summer adventure, consider these travel tips.

Plan Ahead – Stress can impact your mind, body, and spirit. Take the time to plan as much of your trip as possible in advance. Don’t wait to start packing until the night before you leave. And remember to pack light!

Give Yourself Plenty of Time -

If you are driving, have your stops planned out for stretching, bathroom breaks, gas, and food.
When traveling by air: Get to the airport early, consider getting help to carry your bags, allow yourself extra time to board the plane, and consider reserving a wheelchair if walking those long terminals may be difficult and tiring.
Consider train travel as a great way to reduce stress and reach your destination.
It is important to give yourself some downtime each day. Even a 15-minute break can be a great way to rejuvenate yourself and allow you to participate in important activities later.

Keep Your Medications with You - Don’t pack your medications in your checked luggage, keep them in your carry on! Keep your medications in their original bottles for identification purposes. Also, make sure you have additional days of doses in case you experience a travel delay returning home.

Stay on Your Regular Medication Schedule – If you are traveling across time zones, consider keeping your watch on your home time until you start the first new day at your destination.

Take extra precautions where you can - Covid and other airborne illnesses can still pose a high risk for those with YOPD. Wearing an N95 mask while traveling is a simple, unobtrusive way to keep you and your family safe.

Hydrate, Hydrate, Hydrate – Because thirst can be affected by Parkinson’s, make sure you are keeping hydrated. If you only drink when you are thirsty, you may already be dehydrated.

Wear Sunscreen – If you take carbidopa levodopa (Sinemet, Sinemet CR, Rytary, Duopa), this medication makes you more sensitive to the sun and heat.

Have Fun – Enjoy your time and have a safe journey!

Angela Robb is a wife, YOPD carepartner, and caregiving advocate. You can read more about Angela & her husband, Karl’s journey with Parkinson’s at ASoftVoice.com.

Shared by Guest Blogger, Melissa Livingston

Mon, 22 Jul 2024 15:42:43 GMT

Thanks, Partner!

From my perspective, loving someone with Parkinson’s disease can’t be easy. We are cranky, stubborn, symptomatic and aggravated that we have to be any of these things. We are unpredictable in our moods and symptoms, difficult to plan around with our med schedules, eating schedules, times that we need to just rest - all of the above. We’re prone to moments of apathy and we are in need of moments of empathy-more often than most-but also just like everyone else .

The underside of loving someone with PD is that you never really know from day to day what face they will have on. And you're expected and encouraged to be the cheerleader, the good cop bad cop the amateur Dr, the nurse the chauffeur, the decision maker… etc. etc.

We’re going to throw roadblocks in your face, we’re going to ask you to leave, we’re going to ask you to run, we’re gonna beg you to stay, we’re going to be terrified that you’ll do any of these things, and through it all we love you so much that half the time we won’t be able to think about the future without you.

So thank you, if you are somebody who loves somebody with PD… anybody…spouse, partner, confidante, friend, fellow sufferer-because you’re slogging through an ocean full of garbage just to get over to that pristine part that you know loves you back…And knowing everything is different every single day you put yourself out there for us because you actually care - and believe me, we know it.

Managing the Pressures of Being a Care Partner

Tue, 02 Jul 2024 17:35:33 GMT

"Its harder for you to see me symptomatic than it is for me to experience the symptoms."

Maybe your partner has communicated this or a similar message to you before. When you’re diagnosed with Young Onset Parkinson’s Disease, you learn that off times will come and go, and you get used to planning your day around expected (and unexpected!) off episodes.

On the other hand, it’s much more difficult for loved ones to become accustomed to witnessing their partner’s struggles and not being able to help. That and plenty of other factors contribute to the stress and pressures that a lot of care partners experience.

As the old saying goes, you can’t pour from an empty cup. It’s important to take care of yourself, take breaks, and recharge before you’re able to continue giving your partner that same level of support over time.

Here are some things you can do to help manage the pressure when things start to get hard:

Practice Self-Compassion

Understand that even the most loving and caring people experience frustration and resentment. Give yourself permission to have these feelings, and remember that it’s okay to feel the way you do. Most importantly, understand that you’re not alone.

Practice Gratitude

Focusing your attention on the good things can work wonders for your mood and your mental state. Make lists of small things that make you happy, little wins from the day, experiences and people that you’re grateful to have in your life, or a combination of it all.

Set Aside Time For Yourself

Prioritize finding time each week to do something for yourself. Whether it’s getting away and going to the gym, reading a book for an hour uninterrupted, going for a walk, or something else, meeting your own needs and spending time with yourself regularly can make all the difference.

Join a Support Group

Sometimes nothing helps more than talking to other people who are going through the exact same thing as you. If you’re not already a member of the Young Onset Parkinson’s Network, you can join for free — we’re just as much a resource for care partners as we are for those diagnosed with YOPD!

Make a Therapy Appointment

If group discussions aren’t your style, talking to a professional one-on-one can help you to better understand your emotions and discover more effective ways to manage them. It’s also a great outlet for venting and expressing bottled up thoughts and feelings without hurting anyone around you.

Get Moving

As much as “go for a run” is probably the last thing a stressed-out person wants to hear, physical exercise really does improve your mental state. That doesn’t mean you have to start training for a marathon or anything, but going for a walk, doing some yoga, or even signing up for a couple of fitness classes can have a major impact.

Spend Time with Friends & Family

It’s common for care partners to forget about their lives outside of YOPD. Intentionally setting aside time to connect with your friends and family outside of your responsibilities as a care partner is a great way to remind you that YOPD isn’t all there is. It can be a great change of pace.

Just as YOPD affects everyone in the diagnosed person's inner circle, YOPN membership is offered to all those diagnosed early with Parkinson's Disease AND those in their inner circle, or "care partner team". Spouses, parents, children, friends, and family alike are welcome in YOPN.

Being a care partner can be a difficult and frustrating experience. But you’re here reading this because your strength and deep love and care for your partner outweigh all the negatives. So even when times are tough, don’t forget to stop and take care of yourself.

Robotics joins the fight against Parkinson's Disease

Tue, 04 Jun 2024 15:20:23 GMT

In this age of artificial intelligence,, it may not be surprising to learn that robots are putting the heat on Parkinson's Disease by providing a solution or freezing. Tremor is possibly the most popular and well-known symptom of the degenerative and chronic disease that causes loss of dopamine-producing cells and wreaks havoc on the central nervous system. You may be surprised to learn that one of the most commonly experienced symptoms is called freezing , and happens when a person with Parkinson's Disease suddenly experiences an inability to move. This not only creates balance issues, but often can happen mid-stride and result in a serious fall.

Two research groups, one from Harvard and another from Boston University, recently collaborated on an effort to produce a wearable device that uses robotics to combat freezing. The device includes a mechanical component that provides an assistive 'push' to help overcome freezing. In preliminary studies, people who wore the robotic device completely eliminated their freezing episodes and were able to walk aster and further than without the high-tech assistant.

Read more about this amazing breakthrough: Robotic exosuit gives Parkinson's patient smoother stride. The Young Onset Parkinson's Network is excited to share that three esteemed researchers from the project will be joining us next month to chat with our members about gait dysfunction and how this new device can help. Learn how freezing of gait impacts movement and walking for people with Parkinson's Disease, explore the potential of next-generation wearable robotics to improve freezing of gait, and learn how you can provide the feedback researchers need to develop more impactful solutions.

This event is free to all YOPN members. Register online at: Preventing Freezing of Gait using Wearable Robotics in Parkinson's Disease.

Mental Health and its Role with Those That Have Young Onset Parkinson's Disease

Fri, 03 May 2024 15:52:43 GMT

In Addition to the Many Physical Challenges To Overcome, There Are Many Psychological Challenges Faced on a Daily Basis

Living with Young Onset Parkinson's (YOPD) throws a lot your way. You might be dealing with physical symptoms, changes in your daily routine, and maybe even concerns about the future. It's completely normal to experience a range of emotions along the way – frustration, fear, even anger.

Furthermore, mental health challenges are extremely common with YOPD. Studies show that anxiety and depression are much more likely to affect people with Parkinson's than the general population. Because of this, it’s especially important to stay in touch with your mental health and emotional wellbeing.

Why are mental health challenges more common in PD folks? There are a couple of reasons. First, the changes Parkinson's brings can be stressful. As mentioned above, you might worry about work, relationships, or your ability to do the things you love. I find this is even more prevalent amongst many of those I interact with that have YOPD. Many of us hide our diagnosis for as long as we possibly can and suppress the anxiety and depression we come across. Second, the disease itself can cause changes in the brain that contribute to anxiety and depression. The neurotransmitters that are affected by PD also play a very important role in our mental health; thus emotional challenges are a common non-motor symptom of the diagnosis. The combination of these factors can make daily life especially challenging.

So, what can you do?

Healthy Eating While Living with Young Onset Parkinson's

Tue, 16 Apr 2024 16:25:29 GMT

Living with Young Onset Parkinson's (YOPD) throws a lot at you. For many of us we are juggling raising a family, working, and dealing with the ins and outs of Parkinson’s. Making sure to eat a healthy, balanced diet can seem like an added burden - however, the benefits, both physically and mentally, of eating healthy are worth the investment.

Why Food Matters for YOPD

The food you choose is the fuel that keeps your body running smoothly. Eating a balanced diet rich in essential nutrients can help manage symptoms like constipation, tremors, and fatigue, all while giving you the strength and energy to take on the day.

Power Up Your Plate

Here are some key dietary strategies to help you live well with YOPD:

Befriend Fiber: Fiber-rich foods like fruits, vegetables, and whole grains keep you feeling fuller for longer and promote gut health, which can help with constipation – a common YOPD struggle.
Hydration Hero: Aim for 6-8 glasses of water daily. Staying hydrated helps your body absorb nutrients and function at its best.
Bonus tip: Warm water in the morning can help stimulate your bowels.
Antioxidant All-Stars: Brightly colored fruits and vegetables are loaded with antioxidants that protect your brain cells. Think berries, leafy greens, and anything orange or red!
Fuel Your Moves:Don't underestimate the power of protein! Lean protein sources like fish, chicken, and beans provide essential building blocks for muscle strength, which can be especially important as you manage YOPD.
Healthy Fats for the Win:Don't fear all fats! Healthy fats from sources like olive oil, nuts, and avocados can help with nutrient absorption and may even offer some neuroprotective benefits.
Sugar Blues? Limit sugary drinks and processed foods. They can worsen tremors and interfere with medication absorption.

Tips to Make Eating Easier

Swallowing difficulties and tremors can make mealtime frustrating. Here are some hacks to keep things smooth:

Thicken liquids with thickening agents to make swallowing easier.
Chop food into bite-sized pieces
Weighted Utensils can help with mitigating tremors while eating

Beyond the Plate: Working with Your Meds

Remember, timing your meals strategically can make a big difference. Certain medications for Parkinson's can interact with food, so talking to your doctor about the best time to eat relative to your medication schedule is crucial.

A registered dietitian can create a personalized meal plan to address your specific needs. Discuss any vitamin or mineral deficiencies with your doctor to ensure you're getting the right nutrients.

Join the YOPN Community

Living with YOPD can feel isolating, but you don't have to go it alone. The Young Onset Parkinson's Network (YOPN) is a fantastic resource for support, connection, and a wealth of information on managing all aspects of YOPD, including nutrition. Join us and connect with a community that understands your journey!

Technology Advancements for those with YOPD

Tue, 05 Mar 2024 18:57:24 GMT

From smart gadgets to game changing devices, technology is transforming how we approach Parkinson's

Living with Young Onset Parkinson's Disease can present unique challenges, but you're not alone! Thankfully, technology is rapidly evolving, offering exciting new tools to help you manage daily activities and maintain your independence. By testing out and embracing the latest technology, those with Parkinson's disease (and your care partners!) can make everyday challenges a little bit easier.

From smart gadgets to game-changing devices, technology is transforming how we approach Parkinson's. Here's a glimpse into what's available:

Conquering everyday tasks:

Smart assistants: Imagine asking your speaker to set reminders, adjust lighting, or control appliances, all through voice commands.
Adaptive utensils: These innovative tools help combat tremors, making eating easier and more enjoyable.

Staying active and engaged:

Wearable trackers: Monitor your steps, sleep patterns, and activity levels, gaining valuable insights into your well-being.
VR therapy: Explore virtual environments that can improve balance, coordination, and cognitive function in a safe and controlled setting.

Connecting with the world:

Telemedicine: Attend doctor appointments or therapy sessions from the comfort of your home, reducing travel burdens and increasing access to care.
Accessible communication apps: Utilize voice-to-text or text-to-speech features to stay connected and express yourself clearly.

Finding the right technology can feel overwhelming, but don't worry! Here are some resources to help you navigate the options:

The Michael J. Fox Foundation: https://www.michaeljfox.org/
The Davis Phinney Foundation: https://davisphinneyfoundation.org/resources/
The American Parkinson Disease Association (APDA): https://www.apdaparkinson.org/
AbilityNet: https://abilitynet.org.uk/parkinsons-and-technology-resources

Remember, you are not alone in this journey. The Young Onset Parkinson's Network (YOPN) is here to support you every step of the way. We encourage you to explore the resources mentioned above and join YOPN today to connect with a community that understands your unique challenges and celebrates your triumphs. Together, we can navigate the world of technology and ensure it empowers you to live your life to the fullest.

Living Well Starts Here.℠

Join YOPN Today: https://yopnetwork.org/Membership

Remember, embracing technology can be an empowering journey. By utilizing these tools and staying informed, you can take control of your Parkinson's and achieve your goals.

photo attribution: Liviu Oprescu / Engadget. For more information on the Gyroglove, read their report from CES 2024.

Your Voice Matters: Become a Young Onset Parkinson's Advocate Today!

Wed, 07 Feb 2024 18:22:42 GMT

YOPN empowers individuals like you to connect, share experiences, and advocate for a brighter future.

Living with young onset Parkinson's disease (YOPD) is challenging, but you're not alone. The Young Onset Parkinson's Network empowers individuals like you to connect, share experiences, and advocate for a brighter future. One powerful way to make a difference is by becoming an advocate for Parkinson's research and legislation.

Why Advocacy Matters:

Increased Research Funding: By advocating for increased government and private funding, we can accelerate research into the causes, treatments, and, ultimately, a cure for Parkinson's.

Improved Legislation: Advocacy can lead to better policies supporting YOPD patients, such as access to affordable healthcare, disability benefits, and workplace accommodations.

Greater Awareness: Sharing your story and raising awareness about YOPD can combat stigma, build public support, and attract more resources to the fight.

How You Can Get Involved:

1. Educate Yourself:

Familiarize yourself with current research efforts and policy initiatives related to Parkinson's. Outside of the resources and information provided by YOPN, organizations such as the Michael J. Fox Foundation, Parkinson's Foundation, Davis Phinney Foundation, and National Institutes of Health provide valuable material.

2. Find Your Voice:

Share Your Story: Write a blog post (You can share it on our website), talk to local media, or participate in awareness campaigns. Sharing your personal experience can spark empathy and inspire action.

Contact Your Local, State, and Federal Representatives: Use resources like the American Parkinson Disease Association to find contact information and advocacy templates. Email, call, or even schedule in-person meetings to voice your concerns and ask for support for Parkinson's research and legislation.

Join Online Communities: Participate in online forums and social media groups to connect with other YOPD advocates, share tips, and organize collective action.

3. Take Action:

Organize a Local Event:

Host a Parkinson's Awareness Walk/Run: Gather your community for a fun and impactful event. Partner with local businesses, schools, or fitness groups for sponsorship and participation. (Or simply show up to local events - your attendance means a lot to the organizers.)

Organize a Fundraising Gala or Auction: Celebrate while raising vital funds. Donate proceeds to reputable Parkinson's organizations or specific research initiatives.

Hold a "Shake-Off" Dance Party: Combine awareness with movement, a key element in managing YOPD. Invite local dance instructors to lead sessions and encourage donations.

Volunteer Your Skills:

Contribute to Online Advocacy Efforts: Volunteer to share your story with YOPN and we can include it in our newsletter, on our blog, and on social media sites, as well as in our outreach efforts to advocate on your behalf.

Volunteer to lead LIVE events: YOPN Live was launched this year. Volunteer to be a leader in your community and bring together like-minded YOPD individuals, care partners, friends, and healthcare professionals. Live events are designed to bring the virtual community together.

Mentor YOPD Newcomers: Share your experience and offer support to newly diagnosed individuals and their families.

Engage Online

Join Online Advocacy Groups: Connect with other passionate advocates on Facebook, Twitter, or online forums. Share information, organize virtual events, and collectively lobby for change.

Challenge Your Network: Encourage friends and family to donate to Parkinson's charities, participate in events, or contact their representatives about YOPD legislation.

Partner with Other Organizations:

Reach out to local Parkinson's support groups or chapters: Offer to co-host events, share resources, or collaborate on advocacy initiatives.

Connect with universities or research institutions: Advocate for increased research funding and participation in clinical trials in your area.

Partner with businesses or community organizations: Explore sponsorship opportunities or joint fundraising efforts to amplify your impact.

Remember: No action is too small! By creatively engaging your community, utilizing your skills, and leveraging the power of online platforms, you can become a powerful force for change in the fight against Parkinson's. Together, we can raise awareness, drive research progress, and advocate for a brighter future for all YOPD patients.

Let's join forces and fight for a cure!

Caring for the Care Partner

Thu, 11 Jan 2024 19:40:35 GMT

Caring for the Care Partner: A Two-Way Street in Young Onset Parkinson's

Living with Young Onset Parkinson's (YOPD) is a journey, and it's one you rarely take alone. Whether you're the person with YOPD or the amazing human beside them, the road can be filled with bumps, triumphs, and everything in between. But here's the thing: it doesn't have to be a solo trek. In this two-way street called YOPD, strong care partners and mindful people with YOPD make the journey smoother for everyone.

For the Care Partner: Supporting with Strength and Grace

Being a care partner is a role filled with love and resilience, and can sometimes be overwhelming. But guess what? You, the rockstar care partner, are vital to this journey. Your support, love, and unwavering presence can mean the world to someone living with YOPD. But here's the catch: you can't pour from an empty cup. Taking care of yourself is just as crucial as taking care of your loved one.

So, how do we find the balance between helping your loved one and taking care of yourself? How do we stay strong, mentally and physically, while ensuring our loved ones with YOPD feel supported and appreciated? Buckle up, because we're diving into the world of two-way care in Young Onset Parkinson's.

Here are some tips to navigate this path with both mental and physical strength:

Embrace the Team Spirit: Remember, you're not alone! Connect with other YOPD care partners through online communities like YOPN or local support groups. Sharing experiences and tips can be a lifesaver.
Prioritize Your Wellbeing: Self-care isn't selfish, it's essential. Schedule "me-time" for activities you enjoy, whether it's a brisk walk, a yoga session, or simply curling up with a good book. A recharged you is a better support system.
Communicate Openly and Honestly: Talk to your loved one with YOPD about their needs and preferences. Don't be afraid to ask for help – that's what teams are for! And remember, it’s okay to ask for clarification. Clear communication avoids misunderstandings and strengthens your bond.
Fuel Your Body, Fuel Your Mind: Eating healthy, exercising regularly, and getting enough sleep are non-negotiables. These nourish your body and mind, giving you the stamina to face anything YOPD throws your way.
Set Boundaries, Embrace Support: You're not alone! Don't be afraid to say "no" when you need a break. Lean on family, friends, and support groups. Remember, asking for help is a sign of strength, not weakness.
Invest in Knowledge: Learn about YOPD, its symptoms, and available treatments. The more informed you are, the better you can navigate its challenges and support your loved one effectively.
Celebrate the Victories, Big and Small: Every positive step, every smile shared, every hurdle overcome – these are victories worth celebrating. Acknowledging progress keeps spirits high and fuels the journey forward.
Embrace Your Own Journey: YOPD impacts everyone differently. Allow yourself to feel your emotions, and remember, it's okay to grieve, to be frustrated, and to have moments of doubt. Seek professional help if needed, and prioritize your own mental well-being.

for the Person with YOPD: Showing Appreciation and Respect

Living with YOPD can be isolating, but remember, your care partner is in your corner.

Here are ways to show your appreciation and keep the two-way street thriving:

Express Gratitude: A simple "thank you" goes a long way. Let your care partner know how much you appreciate their support, big and small gestures alike.
Communicate Your Needs: Don't bottle up your frustrations or challenges. Open communication lets your care partner understand how best to support you.
Be Patient and Understanding: YOPD can be unpredictable. Be patient with yourself and your care partner, and remember, everyone is doing their best.
Stay Involved in Decisions: As much as possible, be involved in discussions about your care plan and treatment options. You're the captain of your own ship, and your voice matters.
Offer Help In Return: Even with YOPD, there are things you can do. Maybe it's folding laundry, making coffee, or simply offering a listening ear. Sharing the load strengthens the partnership.
Celebrate Together: Share your victories, big and small, with your care partner. Their happiness is your happiness, and vice versa.
Respect Their Boundaries: Your care partner needs time for themselves too. Respect their need for breaks and don't guilt them for taking time for their own well-being.
Remember, You're Still You: YOPD may be part of your journey, but it doesn't define you. Keep your passions alive, engage in activities you enjoy, and remind yourself and your care partner that you're still the bright, vibrant individual you've always been.

The YOPD road may have its twists and turns, but with mutual respect, open communication, and a commitment to well-being, care partners and people with YOPD can navigate it together, stronger and more united than ever.

To the care partners: Thank you for being the unwavering heroes of these YOPD journeys. Your dedication and love are both an inspiration and invaluable. Remember, you, too, are not alone in this. The YOPN community offers a space for knowledge, resources, and support waiting to embrace you.

Together, let's make this two-way street of YOPD a journey of shared strength, resilience, and unwavering love.

Holiday Survival Guide

Wed, 29 Nov 2023 17:13:14 GMT

8 Tips for a Stress free Holiday Season - YOPN Member Eric Slominski

Now that the Thanksgiving leftovers are gone, and you've waved goodbye to family, it's time to start preparing for the homestretch of the year. As kids, we tend to remember this time of year fondly, but now as adults, the warm memories of good times and the exciting anticipation of Christmas morning may have been replaced with excessive stress and even loathing. The stressors that can contribute to this are many.

Over-hyped - Right after Thanksgiving, Christmas songs begin playing, decorations go up at many homes and businesses, and Black Friday and Cyber Monday kick off holiday shopping. The insanity is practically inescapable, and the outsized expectations of the holiday can often lead to burnout and disappointment.

Commercialization - With religion playing an ever-lesser role in families, it seems that capitalism has taken the opportunity to step in and offer an alternate emphasis on the gift-giving aspect of the holiday. But it's all too easy to go overboard and spend too much on things nobody really needs. With the steady allure to spend, spend, spend it's no wonder it's so easy to end up cranky, exhausted, and broke.

Too many temptations - From holiday parties full of tasty treats and alcohol as well as visits from well-intentioned friends and neighbors who often bring more treats, even the most disciplined among us can struggle and may eventually cave to temptation.

Traveling - Traveling during the holidays can be a nightmare. Traffic jams, waiting in line, and crowds. Who needs that?

Too little sunlight - Being outside in the sunshine is simply good for you. Unfortunately, there's precious little of it this time of year. This can lead to or worsen mental health problems for some.

But it doesn't have to be this way! To me, the holidays are a time to relax and appreciate all the good things we have in our lives. Also, it's a time to create great memories and have fun with friends and family. Particularly for those of us with Parkinson's Disease, connecting with people who understand us can help us remember that we're never truly alone and do wonders for our mental health. Organizations like Young Onset Parkinson's Network (YOPN) can help you get plugged into a thriving community of individuals who are thriving despite Parkinson's Disease.

Read on for eight tips for making it through the holidays with sanity intact:

Tip # 1 - Embrace Moderation - If we can adopt a mindset of moderation, that is instead of eating 3 cookies, just savor one. Or instead of eating 3 huge pieces of each cake, just have a small slice of each. That way, you can enjoy the tastes of the holidays, without going too over-board. And if you overdo it...don't stress out about it. Just vow to put in some extra time on the bike or sneak in some extra burpees (see Tip #3 below).

Tip # 2 - Do something nice - Successful management of Parkinson's Disease often requires us to spend a lot of time thinking about ourselves. This is not necessarily selfishness; Parkinson's is a time-consuming disease to manage. However, I don't know about you, but if I'm not careful I can really start to take all the good things in my life for granted. Especially this time of year, it's good to remember those that are less fortunate. Know someone going through a tough time? Consider surprising them with a random text or call. You may be surprised how much a simple thing can brighten a day. Simply letting someone know you are available for a chat can make a positive difference. It seems counter-intuitive, but being less self-centric can really end up helping us in the end. Thinking of others can remind us to be grateful for what we have, leading us to be more satisfied with our lives overall.

Tip # 3 -Don't stop moving - I'm sure exercise is already part of your daily routine (it IS ...right?). But in case you somehow don't know by now, exercise is the absolute best way to banish stress. This, along with all its undeniable benefits for People with Parkinson's (PwP). For PwP, exercise is an even more important part of your overall holiday survival strategy. But between all the traveling, finding the perfect gift for loved ones, decorating, parties, and other holiday activities, it's easy to get knocked out of your normal routine. Don't let that stop you from squeezing some movement into your day. Only got 10 minutes? Just do something. How about...3 sets of 25 air squats? Say 2 hours later you have a spare you have a spare 5 minutes. How about doing as many pushups as you can? In the next opportunity do planks. You see? In almost no time at all you've managed to squeeze in a mini-workout! Even a little exercise can go a long way towards making you feel and move better.

Tip # 4 - Establish a Budget - To help keep your spending reined in try to create a budget ahead of time to decide how much to spend. There are programs to purchase out there that can help but a simple spreadsheet can work fine. Even if you later decide that it's just too much effort to add in each individual purchase, having gone through the mental exercise will have given you an idea of what you want to spend which will have helped to keep it under control.

Tip # 5 - Communicate gift-giving plan ahead of time- Agreeing beforehand what the gift-giving expectations are with the adults can alleviate a lot of unnecessary stress. Many adults I know would rather focus on seeing family rather than stress unnecessarily over what to get each other.

Tip # 6 - When driving, leave early...and be flexible - When driving pack ahead of time and leave as early as you feasibly can. Northern VA, where I live, is notorious for unexpected delays. A very early departure at least reduces the chances of a traffic jam spoiling your plans. If you do get delayed, try to keep an open mind about exploring something potentially interesting off the next exit and getting back on the highway when the traffic dies down a bit.

Tip # 7 - Embrace hibernation mode - This time of year I tend to get really great sleep. Maybe it's the cozy feeling of being warm in bed while the weather outside is so cold and wet? Whatever it is, great sleep can help combat some of the stress common this time of year. To get the best sleep possible, don't eat or drink too close to bedtime. It's generally accepted that a light snack before bed is ok. Alcohol to me is an absolute no-no before bed as my sleep is just not nearly as rejuvenating.

Tip # 8 - Mental hack to triumph over short-day anxiety - If you're one of those folks like me who can feel a bit trapped when the days get so short you can maybe try a little mental trick to help you out. Remember that the shortest day of the year coincides with the first day of Winter. As that day falls on December 21st or 22nd annually, the days are already getting longer by the time it's Christmas morning! It's location-dependent (science!...no actual math!), but you'll expect to receive about 2 more minutes of lovely daylight each day until summer! And you thought you didn't get anything good for Christmas?

How to Express Gratitude Through Different Love Languages

Tue, 31 Oct 2023 16:55:14 GMT

A simple "thank you" can mean so much more when you express it in just the right way.

Gratitude is a powerful emotion that can strengthen relationships and make people feel loved and appreciated. But how do you show it in a way that is meaningful to your care partner, friends, or loved ones? It’s actually simpler than you think: learn how to speak their love language.

What are Love Languages?

A love language is the way a person prefers to express and receive love. The five love languages are:
1. Words of affirmation
2. Quality time
3. Receiving gifts
4. Acts of service
5. Physical touch

Once you identify someone’s love language, you can tailor your expressions of gratitude to speak to them in a way that they will understand and appreciate. People can have anywhere from one primary love language to a combination of two or three that resonate the most with them.

Here are some tips and examples for showing gratitude based on each of the five love languages:

Words of Affirmation

People with this love language value: verbal acknowledgments of affection, compliments, words of appreciation, verbal encouragement, and frequent written communication (like texting or social media engagement)

Tips for Expressing Gratitude:
- Tell them how much you appreciate them and all that they do
- Mention specific things they’ve done or said to you
- Write them thank you notes
- Send them random, unexpected texts expressing your gratitude to brighten their day
Examples & Ideas:

1. “Thank you for being so patient and kind on my off days. Your support means more to me thank you know, and I wouldn’t be able to get through them without you.”

2. “I’m so lucky to have a friend like you. You always know how to make me laugh and feel better when I’m down.”

3. “You’re the strongest person I know. You inspire me to be a better person, and I wouldn’t be where I am today without you.”

Quality Time

People with this love language value: spending time together, active listening, eye contact, undivided attention, and full presence during meaningful conversations or while participating in recreational activities together

Tips for Expressing Gratitude:
- Put away your phone and minimize other distractions while spending time with them
- Make plans for dates or other activities that you can enjoy together
- Give them your undivided attention during conversations
Examples & Ideas:
1. Attend a YOPN Community Gathering or Speaker Series Event together, then go out to dinner afterward.
2. Make plans for activities outside of your normal routine that fit their interests, like trying out a cooking class or visiting the local museum.
3. Set aside a little bit of time each day — even if it’s only 5-10 minutes — where you can leave your phones in a different room and be present together.
Receiving Gifts

People with this love language value: visual or tangible symbols of love, the deliberate and meaningful process behind gift-giving, and objects bearing sentimental value

Tips for Expressing Gratitude:
- Don’t be afraid to give small gifts, even if it’s just a token of appreciation
- Consider their unique interests or hobbies when choosing a gift
- Take extra time to pick items that are thoughtful and meaningful
- Gift them something you’ve noticed they want but won’t get for themself
Examples & Ideas:
1. Surprise them with a small care package of their favorite snacks and drinks “just because.”
2. Save a small reminder of your last activity together to give them later. It could be anything from a pretty rock you spotted on a hike to movie ticket stubs.
3. Notice when they’re going through a rough patch and cheer them up with something small — like a cozy sweatshirt featuring their favorite sports team, or a keychain they can carry with them as a reminder of your love and support.
Acts of Service

People with this love language value: when someone goes out of their way to make life easier or more comfortable for them, being helped, and favors, no matter how small

Tips for Expressing Gratitude:
- Help them with chores or errands — especially the ones they don’t enjoy doing
- Do things for them without being asked
- Offer to take care of things that would otherwise require them to get up
Examples & Ideas:
1. Cook one of their favorite meals, then take care of the dishes and clean up while they sit back and enjoy dessert.
2. Notice when they’re stressed and offer to take over their least favorite chores to ease their workload.
3. Try to do one small thing for them each day — like throwing away their empty coffee cup, retrieving their mail, refilling their water bottle, or clearing their plate.
Physical Touch

People with this love language value: warmth, comfort, and physical signs of affection like holding hands, cuddling, hugging, and kissing

Tips for Expressing Gratitude:
- Initiate touch during conversations with them
- Reach for their hand when you’re walking together
- Greet them with handshakes, hugs, kisses, or pats on the back
Examples & Ideas:
1. Reach across the table and squeeze their hand(s) as you express your gratitude for them. (See Words of Affirmation for inspiration.)
2. Display playful physical affection when you’re out together, like punching them lightly on the shoulder, playing with their hair, or bumping your leg into theirs.
3. If you’re in a romantic relationship, initiate frequent intimate touch like caressing, snuggling, and kissing.

Gratitude Ground Rules

One of the most important things to keep in mind is that these tips and ideas won’t work unless you abide by the following ground rules:

Always be sincere and genuine
Be specific and avoid generic statements
Show gratitude consistently, not just every now and then.
Don’t keep score
Remember to be just as grateful for the little things as you are for the big ones

Sometimes expressing gratitude can be tricky, especially when it's to the ones we care about the most. Learning their love language and how to speak it can help us show appreciation in the ways that are most meaningful to them.

How YOPD'er Mark Kohus Climbed Mt. Kilimanjaro

Mon, 02 Oct 2023 19:20:48 GMT

YOPN Treasurer Mark Kohus wanted to prove that it's possible to live actively and well with YOPD — so he climbed Africa's tallest mountain.

Back in 2018, 46-year-old Mark Kohus found out he had Young Onset Parkinson’s. Like many others, he didn’t know anyone else who shared his experience and wasn’t sure what to do next. He got involved in boxing classes for people with Parkinson’s but felt out of place in a sea of senior citizens.

As Mark continued searching for ways to stay active, he found that resources for the Young Onset Parkinson’s subset were few and far between. He didn’t want his life to be like that of the older people he saw, so he persisted in his quest for an active, PD-friendly lifestyle. Then he met YOPN Founder Anna Grill, and everything changed.

“We met at a Davis Phinney Foundation event, and her organization sounded like the perfect fit,” he recalls. “I ended up joining the board a little over a year ago, and it’s been great. We’re reaching people who want to be active and not sit and wait for PD to take everything from them. It’s exhilarating and exciting to discover there are a ton of people out there that are experiencing the same thing.”

Soon after joining the board, Mark started getting emails about an opportunity to climb Mt. Kilimanjaro with a team organized by the Michael J. Fox Foundation. Despite his advocacy for staying fit and active with Parkinson’s, he dismissed the messages. Who would be crazy enough to do that with PD?

And so the emails kept coming. And Mark kept ignoring them…until one day he didn’t. “Why not?” he thought to himself.

“The application process was simple,” he recalls. “There weren’t any strict requirements, and the only question was basically ‘Are you willing to do this?’”

“Then I texted my wife to tell her I’d applied. I expected her to ask more questions, but she was immediately super excited and all for it. She’s usually very cautious, so it was motivating for her to react like that, which gave me the validation I needed to really go for it.”

Preparing to Climb

After Mark’s application was accepted in December 2022, he had until August of 2023 to prepare for the climb. Little by little, he began adding more hiking, cardio, and strength training to his workout routine. 3-mile hikes eventually grew into 11-mile hikes with a weighted backpack. Throughout the training, he and the other accepted applicants met over Zoom to get to know each other and exchange training tips.

“About six weeks before, I went to Colorado to get a sense of how my body would react to the altitude,” Mark explained. “Since I live pretty much at sea level down here in Kentucky, I wanted to try hiking in an environment more similar to the actual climb.”

His body handled the altitude change well, which further boosted his confidence about taking on Kilimanjaro. Then, before he knew it, Mark found himself gazing down at its peak as his flight approached the Kilimanjaro airport.

The Real Journey Begins

“I could see the top of the mountain from the clouds above and just thought, ‘Wow, I’m gonna be on top of that mountain,’” he remembers. “It was both intimidating and inspiring — it really hit me emotionally at that point.”

When all 9 climbers finally met in person, Mark described feeling an “instant connection” between the group since Parkinson’s Disease had touched each of their lives in one way or another. Five were either care partners or family members climbing to honor their loved ones, three (including Mark) were diagnosed with YOPD, and one was a 67-year-old woman who had been diagnosed with standard PD.

“She was a constant inspiration for everyone,” he said. “She was always ready to go and always out in front of the group with the guides. We kept reminding ourselves that if she can do it, we can do it.”

And so the group set off on what would be a 7-day trek: Five and a half days to make it to the summit, and one and a half to get back down.

“The sense of camaraderie we developed was incredible,” Mark said. “Since we were all connected to PD in some way, everyone understood what the other participants were going through, and was patient and understanding when someone needed to take a break. We all helped each other out and recognized when meds needed to be re-upped and everything.”

“There were no built-in, special accommodations for those of us hiking with Parkinson’s — we just treated each other normally and followed the standard precautions just like any other climber would.”

The Challenges Along The Way

The third day presented the toughest challenge for Mark. After climbing from 12,000 to 15,000 then back down to 13,000 feet, the altitude sickness hit.

“We went to 15 [-thousand feet] to get a feel for the altitude we’d experience the next day, but went back down so we could rest and sleep at a lower altitude,” he explained. “I had a constant, low-grade headache and not much of an appetite, but I remembered what I’d read about altitude sickness before and how it was important to eat.”

Despite his exhaustion, Mark was able to have some food that night and was relieved to wake up feeling refreshed and energized for the day ahead.

“It also helped talking to the other folks about it the next day and hearing they were experiencing the same thing — it had been a hard day for everyone, but after talking about it we knew we were going to pull through it together.”

The Summit

Finally, day 5 had arrived. After all of their hard work, the self-dubbed “Kili-9” set out to conquer the summit of Mt. Kilimanjaro…at 11 pm. The plan was to hike through the night and arrive at the top after sunrise. The group donned their headlamps and stared off into the pitch darkness, one foot after the other.

“It was a step, step, step slow walk,” Mark remembers. “It was a pretty busy night on the mountain — there were a lot of other groups climbing at the same time, so we could see all of their headlamps up above and down below us.”

The wind chill was close to 0 degrees Fahrenheit, and after some time, the initial excitement wore off and the group was losing steam.

“Then, finally, we caught our first glimpse of the sun slowly peeking up from the curvature of the Earth,” Mark said. “The sun coming up warmed our souls and spirits and off we went. It gave us the second wind we all needed and there was this unspoken feeling of ‘I’m doing this no matter what!’ all throughout our group.”

As soon as the Kili-9 took their first steps onto the summit, it was mission accomplished. As they took in the 360-degree views of the scenery from on top of the world, they allowed the significance of their accomplishment and teamwork to wash over them. Mark thought back to when he flew in and saw where he was standing now from the airplane window.

The Power to Live Well (Everyone Has It)

Although his initial reaction to climbing a mountain with YOPD was “Who would be crazy enough…?” Mark proved to himself that he had the power to take on and achieve a seemingly impossible goal.

“It’s the hardest thing I’ve ever done physically or mentally,” he recalls, “but knowing that I have PD and can still do these things that healthy people can do — and even some can’t — was absolutely worth it.”

For readers interested in making a climb like his, Mark has the following advice:

Find a good organization or a good group of friends and/or family that you know and trust will support you along the way.
Enlist a reputable guide company or an experienced individual who can help navigate and prepare you for the journey.

Mark hopes that his story will inspire and encourage other YOPD’ers to pursue big goals and take on those kinds of intimidating, yet rewarding challenges, without letting PD discourage them from living and experiencing their lives to the fullest.

What Does That Drug Do?

Thu, 31 Aug 2023 15:28:40 GMT

PD meds may have complicated names, but we put together a simple breakdown of how some of the most common ones work.

Disclaimer: This post is intended to be strictly informative and is in no way offering medical advice. Talk to your doctor to determine which treatment course is best for you.

Although there is no definitive cure (yet) for Parkinson’s or Young Onset Parkinson's, medical research has progressed leaps and bounds in the past decade to provide us with a wide range of effective treatment options. However, doctors and scientists have a habit of choosing complex, hard-to-pronounce names for the drugs they develop, which can make learning about them more intimidating than necessary. So, we decided to break down how some of the most common ones work to help everyone understand them a bit better:

Amantadine - Originally developed as an antiviral to prevent influenza, Amantadine was found to improve mild Parkinson's symptoms like tremors, akinesia, and rigidity.

Anticholinergics - Anticholinergics may be recommended to younger patients (like those with YOPD) who do not have significant akinesia or trouble walking to reduce bothersome tremor symptoms.

COMT Inhibitors - Catechol-O-methyl transferase (COMT) inhibitors may be used to prolong and enhance the effect of levodopa. They're primarily used for people who experience "wearing off" periods of motor fluctuations at the end of their levodopa dose. They have no beneficial effect when taken alone.

Dopamine Agonists - Dopamine agonists directly stimulate dopamine receptors in the brain. Clinical trials have found them effective for controlling Parkinson's symptoms but can be slightly less effective than levodopa and result in more side effects.

Istradefylline - Istradefylline can be used to treat motor symptoms that can happen when levodopa "wears off" (similar to COMT inhibitors). It was approved for use in the United States in 2019, so more research is needed to fully understand its risks and benefits relative to other medications.

Levodopa - Levodopa is currently the most effective drug for treating Parkinson's symptoms and is particularly effective in treating those with bradykinesia. Tremor and rigidity have also been found to respond to levodopa treatment.

MAO B Inhibitors - Monoamine oxidase type B (MAO B) inhibitors work by blocking the effect of enzymes that inactivate dopamine and can modestly reduce PD symptoms. They also may allow dopamine to remain in the brain for a longer period before being broken down.

Knowledge is power, and learning more about how different drugs work to relieve and treat symptoms can be comforting when you enter the unfamiliar territory of Young Onset Parkinson’s. As stated above, this article is strictly informational and not intended to be taken as medical advice. Talk to a licensed physician to determine what treatment options are best for you or your loved one.

The Big 3 Benefits of Community

Fri, 18 Aug 2023 15:41:05 GMT

We all know that we need food, water, safety, and shelter for basic survival — but we tend to forget one critical need; the one that helps to give our lives meaning: community.

When faced with difficult situations, many of us tend to withdraw from friends and family or isolate ourselves as a coping mechanism. This is often true for newly-diagnosed Parkinson’s patients, especially those in the young-onset subset. Such a significant life change is overwhelming, and sometimes our knee-jerk reaction may be to ignore it or pretend that everything is okay.

The problem is that it’s a short-term solution that ultimately creates distance between ourselves and the people we care about — which is exactly the opposite of what we need. Being part of a community can have positive effects on our physical, mental, and emotional health, and is, in fact, the most important need humans must meet after securing food, water, shelter, and safety (according to psychologist Abraham Maslow).

The 3 biggest benefits of establishing community connections we’ve found through the Young Onset Parkinson’s Network include:

1. Reducing Feelings of Loneliness

When we struggle with big, life-altering changes, many of us unconsciously assume that we’re the only ones who feel the way we feel or that no one can really understand our situation. This is especially true for those affected by a rare disease like YOPD, whether you’re a patient, care partner, family member, or friend.

Joining a community of people facing similar challenges serves as a constant reminder that you’re not alone, and gives you a safe space to share your true self with others. In turn, being accepted by others fosters a healthy sense of belonging.

Feeling accepted and like you belong to something bigger can then make it easier to take care of yourself and participate in activities that improve your physical health.

2. Getting The Right Support

While we may want to believe it’s possible to get all the support we need from a significant other or a handful of close friends or family members, that’s a lot for one person (or even a small group) to be responsible for.

A community of people with similar experiences can sometimes offer more appropriate advice or tell you exactly what you need to hear in a way that a husband or wife can’t. Oftentimes, support coming from these groups can also feel more validating since it’s coming from someone who “gets it.”

Lifelong friends may struggle to relate when you recall what happened on your last “off” day, but you may find unexpected comfort in hearing a total stranger say “That happens to me, too! Here’s what I’ve found that works…”

This doesn’t mean you should completely stop relying on your spouse, friends, or family members for support — this is more to say that joining a community can balance out your larger support system and allow you to seek advice and comfort from multiple perspectives.

3. Finding Purpose

Not only are communities a good way to get the support you need, but they also provide you with opportunities to find purpose. For example, when we spend time among a group of people, we tend to fall into natural roles.

Perhaps you’re the one people go to for advice about intimacy and relationships with YOPD, or you find you enjoy spreading the word and inviting new members to join. Or maybe you’re the quiet observer who soaks up all this new information and uses it to improve yourself and your personal relationships.

These kinds of roles can give you a sense of purpose through helping others, both of which can breathe new meaning into your life.

Allowing yourself to be vulnerable and open to new people and experiences can be frightening and difficult — but the rewards of joining a community far outweigh the initial fear and discomfort. Being part of something larger than yourself sets you up to live a more enjoyable life by establishing meaningful connections, growing your support network, and rediscovering your purpose.

Want to see what it’s all about? Click here to join the Young Onset Parkinson’s Network for free today.

A Timeline of PD Research

Tue, 11 Jul 2023 20:10:18 GMT

Not only is knowledge empowering, but it's also a strong antidote for helplessness. In times of despair, let the reminder of how far we've come in PD research & treatment be the light that guides you back toward hope.

Let’s not beat around the bush: dealing with Parkinson’s can be discouraging. Whether you’re a patient, care partner, family member, or friend, the symptoms can be frustrating and it’s not uncommon to feel like you have no control over the situation. The good news is that there’s a reliable antidote for those feelings of helplessness: empowering yourself through knowledge.

PD research has advanced by leaps and bounds since Parkinson’s-like symptoms were first described in ancient texts — and the whole global community continues to make valuable contributions.

Here’s a timeline of some of the most notable research milestones we’ve reached throughout history:

2,000 BC - 425 BC - Brief descriptions of PD-like symptoms appear across many ancient texts.

169 AD - Galen, an ancient Roman anatomist & experimental physiologist, distinguishes the differences between “resting” and “intentional” tremors in his book “De Tremore, Palpitatione, Convulsione et Rigore.”

1228 - During the Jin-Yuan Dynasty, a Chinese physician named Zihe Zhang recorded a possible case of PD describing symptoms including tremors, stiffness, unexpressive facial features, loss of dexterity & finger movements, depression, a chronic progressive course, and poor response to drugs.

1690 - Clinical symptoms of PD are described in a textbook published by Hungarian physician Ferenc Papai Pariz, more than 120 years before James Parkinson published An Essay on the Shaking Palsy.

1817 - English surgeon James Parkinson publishes An Essay on the Shaking Palsy. This work is widely accepted as the first official identification and description of “paralysis agitans.”

1872 - French neurologist Jean-Martin Charcot renames “paralysis agitans” Parkinson’s Disease, after James Parkinson.

1899 - French physician Édouard Brissaud (who studied under Jean-Martin Charcot) is the first to suggest that PD pathologically originates from a damaged substantia nigra.

This part of the brain controls movement, so when nerve cells in the substantia nigra die or become impaired, they cannot produce dopamine and subsequently cannot facilitate regular, healthy movement.

1912 - German-born American neurologist Frederick Lewy observes aggregated inclusions or abnormal aggregations of protein that develop inside cells affected by Parkinson’s Disease.

1919 - Konstantin Tretiakoff, a Russian neuropathologist, renamed Frederick Lewy’s aggregated inclusions “Lewy bodies,” and determined that these Lewy bodies are located in the substantia nigra in cases of PD.

1960 - Oleh Hornykiewicz, an Austrian biochemist, found that Parkinson’s patients had reduced dopamine levels in the striatum. Dopamine signals in this part of the brain are critical for things like motivation and motor learning.

1961 - French Canadian neurologist André Barbeau finds Levo-dopa (L-Dopa, a direct precursor to dopamine) to be an effective treatment for improving Parkinson’s symptoms.

1967 - Dr. Melvin D. Yahr introduced the Hoehn-Yahr scale for staging PD progression:

1987 - French-Algerian neurosurgeon Alim-Louis Benabid introduced deep brain stimulation (DBS) as a surgical treatment for controlling PD tremors.

1997 - 85 years after the first observation of Lewy bodies, scientists identified over 50 proteins in this aggregated inclusion with α-synuclein being the most important component.

That same year, Michael Polymeropoulos identified the α-synuclein gene (SNCA) as the first causal gene of PD, revealing future opportunities for genetic screening research.

2001 - The first double-blind control trial of a cell-based therapy for PD is conducted.

2003 - German anatomist Heiko Braak proposes a pathological staging of PD in which he hypothesizes sporadic PD is caused by a pathogen entering the body via the nasal cavity, which is subsequently swallowed and reaches the gut, initiating Lewy pathology (LP) in the nose and digestive tract.

2006 - Chinese Dr. Zhuohua Zhang and his colleagues identified a link between the PINK1 and DJ-1 genes, demonstrating the potential for genetic inheritance of YOPD.

2009 - The Parkinson’s Foundation launched the Parkinson’s Outcomes Project; the largest-ever clinical study of the disease with over 13,000 participants across four countries.

2023 - An international coalition of scientists led by The Michael J. Fox Foundation discovered a biomarker for PD — abnormal α-synuclein proteins in brain and body cells. The discovery opens up a world of possibilities for improved treatment, further research, and the potential for newly-diagnosed individuals to never advance to full-blown symptoms.

If you’re still looking for hope after reading through this impressive progression of our PD knowledge over time, just think about the kind of technology available to us today. Think of how far we’ve come in terms of treatment, discovering drugs and interventions that allow those with PD and YOPD to live higher-quality lives. With all of the effort and care that has been poured into research over the years, it’s impossible not to look toward the future with hope.

Sources:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5636740/

https://www.parkinson.org/advancing-research/finding-cure/research-milestones

https://www.michaeljfox.org/news/breaking-news-parkinsons-disease-biomarker-found

How to Change your Mindset with YOPD

Tue, 30 May 2023 17:04:40 GMT

Even though uncertainty can be frightening, you have the power to change your mind — and the rest will follow.

Before Mike Quaglia was diagnosed with YOPD, he was hard at work making a name for himself in sales. After leaving the family business for a new position, he quickly rose through the ranks to achieve the title of #1 salesperson and was later promoted to manager.

He excelled in connecting with clients and enjoyed maintaining relationships with them. In fact, his interpersonal talents and people skills played a big role in his career success. Hosting golfing trips and treating clients to dinner was arguably his favorite part of the job. Mike had his sights set on running the whole company if things kept going his way.

But they didn’t. And if they had, then he wouldn’t have this story to share.

In October of 2006 at age 42, Mike found out that he had Young Onset Parkinson’s Disease. Determined not to let it get in the way of his plan to become CEO, he pushed himself to continue on like nothing happened. That worked out for a while, but as time went on, symptoms began to pop up and interfere with his performance.

“It was like Parkinson’s kicked my brain,” he recalls. “It was all mental; I didn’t experience any of the physical symptoms back then. I just became more paranoid, depressed, and apathetic. I stopped communicating with everyone.”

Mike began to jump between jobs every couple of years, which he’d never done before. He withdrew from friends and family and watched the connections he worked so hard to cultivate crumble bit by bit.

But it’s not that he suddenly and randomly decided not to care anymore — it’s that he was grappling with the mental and emotional implications of a disease over which he had no control.

“I went from being really communicative to basically falling off the face of the Earth,” he remembers. “I hit the bottom around 2016 or 2017. But even though I had stopped talking to her the way I used to, my wife supported me through the whole ordeal. And I also have some really great friends and business partners that stuck by me, and who I still talk to to this day.”

With the support of his wife and friends behind him, Mike was ready to take some small steps toward positive change. The first was a conversation with fellow YOPD patient Heather Kennedy about separating thoughts from the self.

“We talked about how to become more aware of our thoughts, understand they’re not part of ourselves, and let them go,” he said. “I knew that before, but talking to her just really solidified that concept for me.”

Following that conversation, Mike’s curiosity about the relationship between thoughts and feelings prompted him to give therapy a try.

“I went through three therapists before I found one I couldn’t BS,” he chuckled. “He helped me organize my thoughts and change my perspective. He also helped me understand how my brain is just reacting to things that happened in the past, and how to use that to stop worrying so much about the future.”

Not long after, small steps turned into bigger steps.

Mike began to open back up to his wife again, which led to the couple training for and running the Boston Marathon together in 2019. Not only did it set the tone for a more physically healthy lifestyle, but training also gave them the chance to spend more quality time together.

And while he didn’t return to his pre-diagnosis career in sales, Mike reignited his passion for connection and meeting new people through hosting podcasts. In fact, you can listen to him and his team interview guests about various topics relating to YOPD on the YOPN Living Well Starts Here^SM podcast.

Mike’s experience serves as a hopeful reminder to the recently diagnosed that it’s always possible to find joy and fulfillment — even when your life takes an unexpected turn. When asked to sum up what he’s learned to share with fellow YOPD’ers, his advice is:

1. Don’t shut yourself off from the people that love you.

2. Remember you’re still the same person.

3. Find your passion and go after it, regardless of whether or not it makes you money.

4. It’s okay to reorganize your mindset and your plans — the rest will follow.

Intimacy & Relationships with YOPD

Thu, 27 Apr 2023 15:33:53 GMT

Sometimes our greatest challenges turn out to be blessings in disguise.

Maintaining relationships is a common challenge for almost everyone. Keeping up with close friends, nurturing romantic partnerships, and staying connected with family all take significant work. While throwing a Young Onset Parkinson’s diagnosis into the mix can make that challenge all the more difficult, it can also end up making those relationships richer, deeper, and more meaningful.

Melissa was diagnosed with YOPD in August 2020, right at the height of the pandemic. The news was hard to handle on top of all of the uncertainty and upheaval caused by Covid, so naturally, she turned to her boyfriend for support. Two days later, she discovered that he was cheating on her. Needless to say, he didn’t handle the diagnosis very well.

Newly single, Melissa returned to the dating scene in extra-hard mode: Not only did she have to contend with the difficulties of the lockdown, but she also had to navigate dating as a single mother of children with special needs in addition to her diagnosis.

“It’s actually harder to date as a special needs parent than as a PD parent,” she recalls. In her experience, sexual partners were still eager for intimacy and interested in learning how to make it work despite her physical limitations.

“It definitely takes more planning,” she said. “It takes a partner who is patient and understands the symptoms and their unpredictability. There are times when that gets in the way and it can be disappointing, but I’ve had a pretty good response to it [intimacy] so far since my symptoms aren’t as progressive.”

Melissa also touched on the importance of being open and honest about YOPD. To maintain healthy relationships in general, she says “You need to be open to sharing your reality in a realistic way.”

Approaching intimacy with this mindset helped her to relax and enjoy herself since she didn’t have to worry about hiding that part of herself from her sexual partners.

Beyond sexual relationships, openness and honesty made positive impacts on her friendships and family relationships, too.

“My kids are really open about it [YOPD] and will talk openly about it in front of other people like it’s normal, so it helps other people adjust and get more comfortable with my diagnosis,” she said. “That really helps when I’m meeting up with friends that I haven’t seen in a long time that might not know about it yet, especially if I’m having an ‘off’ moment in front of them.”

While being upfront about her experience has helped ease the tension and bring her closer to some, Melissa notes that others can still have a hard time understanding and accepting her condition.

“I talked to my Dad about it one day and it was really hard for him to swallow. But I was able to explain to him that I’m still happy and living a high-quality life — and that I may even be happier now than I was before the diagnosis,” she recalls. “Sometimes you have to work with people to help them see a different perspective.”

The past three years of living with YOPD have helped Melissa to develop a more positive outlook on life, strengthen her relationships, and achieve deeper levels of personal growth. When faced with challenges that initially seemed impossible to overcome, she focused on their learning opportunities and now looks back at her progress with gratitude.

Whether it’s about romantic relationships, sex, friendships, or your relationship with yourself, Melissa recalls the most important piece of advice she’s ever received: Take advantage of the now.

If you enjoyed learning about Melissa’s story and want to learn more about living well with YOPD, Young Onset Parkinson’s Network members get exclusive access to speaker series events, virtual community gatherings, and more. Click here to join for free today.

We know that April is Parkinson’s Awareness Month, but why?

Fri, 31 Mar 2023 13:37:47 GMT

Have you ever wondered where all the official PD symbolism comes from, or why April was specifically chosen to celebrate Parkinson's Awareness Month?

The answer is that it’s the birth month of James Parkinson, the London physician who was the first to describe a PD case in 1817. At that time, he was most known for authoring a work titled An Essay on the Shaking Palsy in which he described “paralysis agitans.”

The name “Parkinson’s Disease” as we know it wasn’t coined until about 60 years later, by French neurologist and professor Jean-Martin Charcot.

The first official World Parkinson’s Day was recognized on April 11th, 1997 — Which would have marked James Parkinson’s 242nd birthday.

But what about the other iconic symbols associated with Parkinson’s?

The Tulip - In 1980, Dutch Horticulturist and Parkinson’s patient J. W. S. Van der Wereld developed a red and white tulip. The following year, he named his prized cultivation after James Parkinson to honor both the man who discovered his disease and 1981 as the International Year of the Disabled.

On April 11th, 2005, Van der Wereld’s tulip was named the worldwide symbol of Parkinson’s Disease at the 9th Annual World Parkinson’s Day conference in Luxembourg. 

Interestingly, the famous stylized tulip logo with leaves shaped like a “P” and a “D” was designed by a Young Onset Parkinson’s patient named Karen Painter. The symbol was universally adopted by the Parkinson’s community in 2010.

The Ribbon - Similar to the pink breast cancer ribbon associated with the Susan G. Komen Foundation, Parkinson’s Disease has a ribbon, too! The official color is grey or silver, depending on who you ask. 

There’s no official reason provided for the color choice, but some like to think grey was picked to represent the “grey matter” in the brain that’s affected by the disease.

The Raccoon - Yes, you read that correctly — PD has its very own mascot: Parky the Raccoon.

Parky came about in 2013 when WPC Ambassador Bob Khun decided to travel around the world with a cardboard cutout of a raccoon. Since the animal is only native to North America, the cutout served to capture peoples’ attention so he could spark conversations about PD.

According to the World PD Coalition, a few other reasons the raccoon was chosen include: 

A raccoon’s distinctive mask represents the “Parkinson’s Mask”
PD can affect sleep, and raccoons are often nocturnal
They’re highly curious, adaptive, and inventive problem-solvers — much like those with PD who implement creative solutions for their limitations in mobility and dexterity

You can even visit WhereIsParky.org to find out where Parky is in the world right now.

To Sum It All Up - While these icons and symbols are fun, they also serve the greater purpose of spreading awareness about PD. After all, that’s what this month is all about, right? 

Looking back to see how much we’ve learned about Parkinson’s and how the community has grown since An Essay on the Shaking Palsy was published in 1817, the future of PD awareness and research has never looked brighter. 

What groundbreaking new discoveries are next?

The Basics of Disability Benefits

Mon, 06 Mar 2023 21:28:37 GMT

Parkinson's Disease doesn't just affect the elderly, and that means disability benefits aren't exclusive to them, either. Even with YOPD, it's important to get to know the basics of Social Security Disability Insurance.

Disability benefits were created to provide financial support to those who are unable to work or who are losing wages due to non-work-related illness, injury, or pregnancy. If you qualify for benefits, the US government provides a percentage of your income as a method of financial assistance.

Although most tend to associate disability benefits with the elderly, you may still qualify and take advantage of the program if you have Young Onset Parkinson’s Disease (YOPD). The amount of money you receive varies depending on the severity of your particular case.

How Qualification Works

The Social Security Administration (SSA) provides a list of conditions that qualify a person for disability benefits, called the Blue Book. Based on section 11.06 of the Blue Book, if you’re unable to work for 12 months or longer due to YOPD, you may be considered disabled and qualify for the program.

If you meet the SSA’s Blue Book criteria, then additional steps are taken to confirm your need for the program’s support.

What Criteria Need to Be Met to Qualify?

You may qualify for disability benefits if you still experience the following despite taking your prescribed treatment for three consecutive months:

Disorganization of motor function in two extremities
Extreme difficulty standing up from a seated position
Extreme difficulty balancing while standing or walking
Extreme limitations in using the upper extremities

Or if you have marked limitations and/or difficulty with:

Comprehending and applying information
Social interactions
Concentration
Adapting to new situations

How to File a Claim for Disability Benefits?

1. Make a list of how your symptoms have consistently impeded your ability to work.

2. Gather and organize information about your treatment providers and any other notes that relate to your diagnosis.

3. Talk to your doctors and coordinate with them to certify your qualification through their reports and claim forms.

4. Fill out the Social Security Disability Insurance (SSDI) claim online or schedule an appointment to do so in person.

5. Proactively gather and submit your medical records to the SSA to ensure that nothing is overlooked, and make sure to save copies and proof of what you sent in case you need to back up your claim.

It can take anywhere from three to five months to receive a response to your claim submission, so don’t delay taking the steps above if you believe you qualify.

Bottom Line

These are just the basics for understanding and getting started with disability benefits. The process can be overwhelming and confusing at times, so it’s important to remember that you don’t have to navigate it alone. Engage with your support system when you need to, whether that means friends, family members, a care partner, or our YOPN community.

Sources:
How to Qualify for Disability with Parkinson's in 2023

APDA Social Security Disability Insurance

6 Cognitive Distortions in the Context of YOPD

Fri, 03 Feb 2023 20:50:00 GMT

Cognitive distortions can warp your sense of reality. Here’s what they look like and how you can identify them to see things for what they really are and improve your mental health.

Cognitive distortions are negative thinking patterns based on emotion rather than facts or reality. When it comes to anxiety and depression, these thought patterns play a big role in perpetuating and even exacerbating mental health issues — and this is especially true for those who suffer from Young Onset Parkinson’s.

We know that people living with YOPD are prone to more challenging psychological issues compared to those who are diagnosed with PD later in life. Recognizing and understanding your own cognitive distortions at work is highly beneficial to maintaining your mental health and improving emotional regulation.

Polarization

You may already know polarization as an “all-or-nothing” or “black-and-white” mindset. You experience polarization when you only consider the extreme outcomes of a situation.

Thinking that YOPD is either going to ruin your life forever or somehow turn out to be the best thing that ever happened to you is an example of this kind of thought pattern.

The antidote: Remind yourself that two things can be true at the same time, and shades of grey are much more common than perfect boundaries of black and white.

Overgeneralization

Have you ever had one of those “off” days and caught yourself thinking that this is it and you’ll never function any better than this again? That’s an example of overgeneralization or assuming that one negative event means that every subsequent event is going to be negative, too.

The antidote: Remember that this negative experience won’t last forever and that you have the power to not let one bad day control your entire week.

Personalization

This is one of the most common cognitive distortions and contributes a great deal to anxiety, in particular. Personalization happens when we take things personally even though they’re not connected to or caused by us at all.

“I wasn’t invited to that party because my tremors make everyone uncomfortable” is an example of a personalized assumption. In reality, it’s much more likely that your invitation got lost or it slipped the host’s mind — something that has nothing to do with you, your traits, or your characteristics.

The antidote: Challenge your assumptions. Can you think of any other, possibly more realistic explanations? Can you try to see the situation from a different, non-personal perspective and focus only on the facts?

Mental Filtering

Ignoring the positives and focusing exclusively on the negatives of a situation is a type of distorted thinking called mental filtering.

Maybe you or your Care Partner only focus on the ways that YOPD has hurt your relationship and forget about the ways it’s brought you closer together or made your partnership stronger.

The antidote: For every negative thought, challenge it with an opposing positive thought about the situation. You might be surprised by how many positive thoughts you can come up with.

“Should” Statements

“I feel so lazy right now because I should be exercising instead of resting.”
Pause. Statements like this are often rooted in deeply internalized family or cultural values. Oftentimes, these values are not appropriate or applicable to you as an individual. Perhaps you are resting because you’re tired, and that’s what your body needs right now.

The antidote: Ask yourself if the expectation that follows that “should” is realistic given the context of the situation. Most of the time, it isn’t.

Catastrophizing

This distortion happens when we jump to the worst conclusion despite there being little to no evidence to support that conclusion.

For instance, you’re unable to make it to your child’s soccer game this time around because your YOPD symptoms are kicking your butt today. A person who catastrophizes may begin to fear that this will cause irreparable damage to the relationship and that their child will grow up hating them and never speak to them again.

The antidote: Review the evidence and/or the facts of the situation. Does any of it support this hyper-negative conclusion?

The Bottom Line

There are plenty of other cognitive distortions that explain why and how our thoughts can trigger such strong emotions. The main way to manage them is to learn how to recognize when you’re experiencing a distortion, and then reframe your thinking so you can look at the situation from a different, calmer, clearer perspective.

Reflecting on your thinking patterns and the feelings they cause is a great practice to maintain your mental health.

Susan Scarlett & Managing PD with Improv

Wed, 11 Jan 2023 16:18:23 GMT

"Yes, and?" Improv classes are emerging as the next big thing among the YOPD community.

Some common advice for maintaining quality of life with Parkinson’s includes staying physically active, paying attention to your nutrition, staying on your meds, and focusing on your mental health. But recently, a more unique activity has been gaining traction among the YOPD community: Improv.

After her diagnosis in 2015, Susan Scarlett found herself feeling scared and withdrawn from her normal life and activities. Fortunately, her support system kicked in and family and friends helped her to stay active and seek out new opportunities for keeping busy and enjoying life.

When her nephew, Adam, set out to break a world record by swimming the length of Lake Okanagan, he dedicated the feat to Susan to keep her motivated and inspired to live fully despite her diagnosis. They trained together and ended up filming a documentary about the experience called Victory Swim.

Dr. Robert Cochrane, a Ph.D. student who was studying the effects of improv on Parkinson’s patients at the time, saw the documentary and invited Susan to participate in his clinical trials. And thus, Susan began her improv journey.

For those who are unfamiliar, improv is a form of live acting (typically comedic) in which the situation, characters, and dialogue are all made up on the spot. No scripts, just saying what comes to mind.

“I was very shy and inexperienced at first,” she recalls. “I’d never performed and lacked the self-confidence to be in front of an audience like that. But about two and a half years into it, I realized I wasn’t just naturally shy — I was afraid.”

Most of us are familiar with how it feels to fear failure and judgment, but when you throw in a neurological disease that affects your motor function, those feelings can become debilitating. Parkinson’s patients often have to deal with this extra layer of self-consciousness about their speech and movement in addition to any existing insecurities, which is, without a doubt, emotionally exhausting.

“The way Robert teaches, he celebrates words like ‘fear’ and failure,’” she says. “We truly get to experience failing and making big mistakes, but in a safe environment where we celebrate them and there’s no judgment.”

Having regular opportunities to practice openness, acceptance, and forgiveness among a community of peers struggling with the same thing has helped Susan to build her confidence back up after her diagnosis. She now attends regular Improv group sessions run by Dr. Cochrane.

“It helps you to change your mindset and your perspective on your situation. Practicing improv has helped me to build up trust and respect for myself and others, which really helps with the depression a lot of Parkison’s patients experience.”

Susan describes her improv practice as having taken her from her post-diagnosis paralysis to blooming into a more active person and taking on things she never imagined she would do. Since participating in Dr. Cochrane’s clinical trials, she has attended events as a keynote speaker and feels a new sense of purpose, pride, satisfaction, and delight in her life.

Who knew that a seemingly playful activity could result in such profound and positive implications for those living with Parkinson’s? To learn more about Susan’s story or find out how you can get involved in Improv, visit https://www.yesandexercise.org.

Nutrition Tips for YOPD Patients

Wed, 09 Nov 2022 16:39:01 GMT

While building healthy nutrition habits can benefit everyone, building specific nutrition habits around your symptoms can help those living with YOPD.

It’s no secret that eating whole foods and plant-based meals has benefits for everyone, but did you know that your food choices can impact the symptoms and progression of YOPD?

While there are no hard and fast ground rules for exactly what meals to eat and how to prepare them, there are guidelines that you can follow for both a healthier diet and to ease your symptoms. Here are some tips to help you build some personalized, healthy nutrition habits.

Drink Your Water

Drink 6-8 glasses of water per day and remember to take your medications with a full glass of water. Staying hydrated can help with digestive issues and ease constipation, and a full glass with your meds can help your body break them down more efficiently.

Vitamins & Minerals

Aim to fulfill your vitamin, mineral, and fiber requirements by eating plenty of whole grains, vegetables, and fruits.

To maintain bone health, you can introduce more Vitamin D into your diet by consuming milk products, egg yolks, and fatty fish. Check with your doctor to see what your Vitamin D levels are and whether you need more before making this dietary change.

Sugar, Caffeine, and Alcohol

Keep an eye on your sugar intake. While it’s calorie-dense and can fill you up for a short period of time, it has few nutrients.

While you don’t have to cut it out completely, drink alcohol in moderation. Cocktails contain little to no nutrients and may not be advisable to mix with certain medications. Check with your doctor to determine what’s best for you.

Limit how much sugar, alcohol, and caffeine you consume right before bed. The fewer of these in your system as you lay down, the better you’ll sleep.

Salt & Fat

Pay attention to and limit how much salt and sodium you consume — eating too much can increase your risk of high blood pressure.

Stay away from saturated fats and cholesterol to reduce your risk of heart attack and certain types of cancer.

Healthy Diet, Happy Brain

Eat antioxidant-rich foods, like brightly colored and dark fruits and vegetables. Why? Because antioxidants are important for your overall brain health.

To promote brain health, snack on walnuts and cashews. Salmon, Tuna, and dark, leafy green vegetables also have an ant-inflammatory effect on the brain.

Exercise

In addition to eating a balanced diet, make sure you’re getting enough physical activity.

Talk to your doctor and find out what a healthy weight looks like for you and try to maintain it. This reduces your chances of developing high blood pressure, heart disease, stroke, certain cancers, and common types of diabetes.

Dealing with the Challenges

With YOPD, you may notice that you’re eating less and losing weight. This is fairly common as a result of nausea from medications, movement symptoms making it difficult to eat, and difficulty swallowing. If and when you notice them, be sure to address these issues with your doctor.

Challenge	Solutions
Decreased Appetite	Exercise to increase hunger Try eating bitter greens or spicy foods to stimulate appetite
Tremor, stiffness, and/or difficulty swallowing	Opt for foods that are softer and easier to swallow Put your dishes on rubber mats to prevent them from slipping
Dehydration	Eat foods with high water content, like celery, butternut squash, grapefruit, strawberries, and watermelon

Different combinations of these tips can work for different people, depending on your unique symptoms and experiences with YOPD. Be sure to consult your physician before making any drastic lifestyle or nutritional changes to make sure that you’re headed down the path that’s right for you.

A Glossary of YOPD Terms

Fri, 07 Oct 2022 18:00:00 GMT

"Sometimes a simple definition can make all the difference."

Being diagnosed with Young Onset Parkinson’s Disease is overwhelming. New patients tend to have a million thoughts racing through their minds after hearing the news, and not uncommonly do they experience feelings of helplessness or fear.

However, one thing that helps us feel more in control again is being able to define and label the unknowns, which makes them less frightening than we initially thought.

If you or a loved one has recently been diagnosed with YOPD, we hope that this glossary of common terms helps you to both understand the condition better and reduce any anxiety you might be feeling.

Akinesia - Inability to move or issues with initiating and/or maintaining a physical body motion.

Ataxia - A movement disorder characterized by decreased muscle coordination and loss of balance during voluntary movements.

Bradykinesia - The slowing down and loss of spontaneous, voluntary movement.

Deep Brain Stimulation (DBS) - A surgical procedure in which a device similar to a heart pacemaker is implanted in the brain and used to deliver electrical stimulation to areas that control movement, blocking the abnormal nerve signals that cause tremors and other PD symptoms. This procedure is currently used for patients whose symptoms are not satisfactorily controlled by medications.

Disequilibrium - Issues with balance or unsteadiness; a common experience in those with YOPD.

Dopamine - A neurotransmitter that helps control movement, walking, and balance. The primary cause of PD patients’ motor symptoms is lack of dopamine.

Dopamine Agonist- A type of drug that binds to dopamine receptors and mimics their role in the brain to produce dopamine-like effects.

Dysarthria - Slurred or impaired speech; a common characteristic of Parkinson's disease.

Dyskinesia - Frequent uncontrollable and involuntary movements that are a common side effect of levodopa treatment. These movements are often characterized by jerky and lurching motions.

Dysphagia - Difficulty swallowing. Can be painful for those experiencing it.

Dystonia - A movement disorder characterized by abnormal posture and sustained hand or foot movement, and can also be accompanied by twisting and rigidity. Dystonia is often confused with Parkinson’s disease.

Facial masking - When the face is immobile with reduced blinking.

Familial Parkinson's Disease - A form of Parkinson’s disease (that may account for less than 5% of worldwide cases) in which it is believed the condition may run in families and be passed on through genetics.

Festination - A spontaneous shuffling or quickening of steps after starting to walk.

Freezing - Sudden inability to move that often happens when beginning to walk or cross a boundary such as walking through a doorway or exiting a car.

Hypokinesia - A term used to describe the slow or diminished movement associated with Parkinson’s disease.

Levodopa - Also called L-dopa, the most common drug used to treat Parkinson's symptoms that works by restoring the dopamine responsible for smooth, coordinated movement and other functions.

Lewy bodies - Irregular clumps of protein that indicate the deaths of dopamine-producing cells. The presence of Lewy bodies is used to confirm a Parkinson’s diagnosis during autopsy.

Micrographia - Small, cramped handwriting. A common symptom among Parkinson’s patients.

Neurodegeneration - The slow, progressive death of certain brain systems observed in Parkinson’s, Alzheimer’s, and Lou Gehrig’s (ALS) diseases.

Olfactory dysfunction - Impaired ability to smell. Can be an early sign of Parkinson’s disease.

On-Off phenomenon - The cyclical pattern in which patients on Parkinson’s medications can function adequately at times, but then become too stiff or immobile to function at others.

Parkin - A gene whose mutations have been associated with a familial form of Parkinson’s disease.

Pill-rolling - A slow tremor observed in Parkinson’s patients in which they alternate moving their thumb and forefinger, appearing as if they’re rolling a small object between them.

Resting tremor - An involuntary movement that affects a limb at rest and will stop for the duration of a voluntary movement. This is one of the most common clinical signs of Parkinson’s disease.

Rigidity - An unusual amount of stiffness in a limb or other part of the body. Rigidity is often one of the most apparent symptoms of Parkinson’s disease when patients undergo examination.

Sinemet - The brand name for levodopa, one of the most commonly prescribed medications used for treating Parkinson’s.

While labeling and defining terms like these can help a little, joining a supportive community can help a lot. YOPN members have access to a wide range of resources, activities, and opportunities that allow them to continue living well despite the diagnosis. Visit https://yopnetwork.org/Join to learn more or sign up.

Source: Michael J. Fox Foundation. Glossary of Terms. https://www.michaeljfox.org/glossary-terms (accessed September 12, 2022).

The Benefits of Gratitude & Giving Back

Wed, 07 Sep 2022 19:00:00 GMT

Google defines gratitude as “the quality of being thankful; readiness to show appreciation for and to return kindness”... but it’s so much more than that.

Research confirms that when we practice gratitude, it helps us to feel happier, enjoy positive experiences more deeply, and build stronger relationships. And, according to previous YOPN Guest Speaker Linda Burton, practicing gratitude may have a strong neurological impact on us, too.

Whether you’re expressing appreciation for your Care Partner or silently thanking the universe for another beautiful day, those little actions cause your brain stem to release dopamine — a chemical that makes us feel good, and triggers positive emotions.

When you journal or reflect about things in your life for which you are grateful, your brain also releases serotonin — a mood-enhancer that boosts our willpower and motivation.

The more often we take actions that release these chemicals (in other words, the more often we practice gratitude), the more we’ll start to notice and focus on the good things instead of the bad. The benefits (according to this study) of that shift in focus are profound:

● Less exhaustion

● Less cynicism

● More proactive behaviors

● Higher job satisfaction

● Fewer absences due to illness

Who wouldn’t want all of that? Now that we have an idea of the kind of impact gratitude can have on our lives, here are five ways you can start practicing:

1. Show Appreciation for Your Care Partner Take some time to write a little thank you note for all they do, or randomly surprise them with their go-to Starbucks order. Not only will it brighten their day, but it will also have positive physical and mental impacts on you, too!

2. Take Stock of Your 5 Senses Sit quietly wherever you are and identify one thing you can see, one you can hear, one you can touch, one you can taste, and one you can smell that you’re grateful for in that moment. This is also a great grounding exercise that can help ease anxiety.

3. Make a List of the Little Things All too often, we tend to focus so much on the big things that we forget to “stop and smell the roses.” A great way to practice gratitude is to make a list of seemingly insignificant things you experienced during your day (like how nice the breeze felt earlier, or a nice conversation you had with a friend), and read over it when you’re finished. You might find that those things aren’t so insignificant, after all.

4. Give Back A quick and easy way to get yourself into a more grateful mindset is to give back to someone or something who has helped you. This could be anything from sending your neurologist flowers to making a donation to an organization like YOPN.

5. Make Time to Be Present Being present in the moment is key to practicing gratitude and reaping the benefits. Pausing and savoring the moment, no matter how big or small, is great practice. If you’re not sure how to become more present, meditation can be a wonderful tool to help you learn.

Maintaining Mobility While Traveling

Mon, 01 Aug 2022 20:25:56 GMT

The second in our two-part series on traveling with YOPD.

Mobility is an important factor that affects how you travel. For those of us with YOPD, that means we have to dedicate more time and consideration toward how we plan to get from point A to point B.

Here are some tips to help you stay on schedule and comfortable en route.

1. Consider how you want to make the trip. Each mode of transportation offers pros and cons. For instance, even though it might take longer to arrive by train than by plane, trains allow you more freedom to move around during the journey. Be sure to consider your personal needs and decide which method of travel will be most comfortable for you.

2. Book tickets for your highest-functioning time of day. Since you’ll be moving around quite a bit and traveling can be a stressful experience, it’s best to try to time the busiest parts of your trip for a time when you know your body will be at its best.

3. Give yourself plenty of time. If you need to catch a connecting flight or check into your hotel by a certain time, be sure to allow more time than you think you need between each leg of the trip. That way, if you’re moving slower than normal or run into delays, you can ensure you keep stress levels to a minimum.

4. Don’t be ashamed to use accommodations. That’s what they’re there for! If being escorted to your gate via wheelchair or boarding the plane early will make things easier, do it! You might even get the first pick of overhead bin storage!

5. Carry a cane or a walking stick. Seriously — hear us out. Travel is stressful by nature, which can impact your physical function. Having something you can lean on and use for support is never a bad idea. It also signals to other travelers that you need space, preventing you from getting caught up in crowds.

6. Build mobility breaks into your travel itinerary. If you’re taking a road trip, map out where and how often to stop, so you can get out of the car and walk around. If you’re limited to an airplane cabin or a train car, consider doing seat stretches and walking up and down the aisle when you can to keep your muscles limber and reduce cramping.

Managing Medicines While Traveling

Wed, 27 Jul 2022 15:30:00 GMT

The first in our two-part series on Traveling with YOPD.

We all know that packing for a trip can be a pain, and despite the checklists, we always manage to forget something. It’s no big deal if that something is a toothbrush, but when you arrive at your destination to find that you left your medication at home…that can put a damper on your trip very quickly.

Making sure that your medications are well organized and accessible during travel can be especially more challenging for people living with Young Onset Parkinson’s and other chronic issues. Here are some packing and prepping tips to keep you covered so you can spend time enjoying your vacation rather than worrying about your meds.

1. Bring more than you need. It’s always better to have it and not need it, instead of needing it and not having it.

2. Pack your meds in multiple bags. We recommend you carry some in your carry-on and some in your checked bag, just in case you run into any issues retrieving your luggage. It’s also a good idea to pack some in your care partner’s carry-on and/or checked bag if you’re traveling together.

3. Make sure everything is labeled properly. Authorities can confiscate pills and other medications if you can’t prove what they are. It’s always a good idea to carry your prescriptions in their labeled Rx bottles. It also doesn’t hurt to bring a list of your prescriptions, so you can keep track.

4. Set reminders or alarms on your phone for when it’s time to take your medication. It’s easy to forget when you’re having fun outside of your regular daily routine.

5. Keep time zones in mind. If you’re traveling to a different time zone or out of the country, make sure the reminders or alarms you set are consistent with what your body needs. Double check with your doctor to make sure you keep on the right schedule.

6. Account for extra doses. We often pack a lot more activities into our days when we’re on vacation, and end up staying awake later than normal. Make sure to account for this and be prepared to take any extra doses, if needed.

7. Check in with your doctor before traveling. While you’re allowed to travel with liquid medications greater than 3 ounces, you’ll need to provide documentation from your doctor in order to pass through airport security with them. This applies to substances like the gel form carbidopa/levodopa for the US-approved Dopa pump. Be sure to pack these in your carry-on, and not in your checked luggage.

Managing the Pressures of Being a Care Partner

Wed, 15 Jun 2022 12:51:30 GMT

"Its harder for you to see me symptomatic than it is for me to experience the symptoms."

Here are some things you can do to help manage the pressure when things start to get hard:

Practice Self-Compassion

Practice Gratitude

Set Aside Time For Yourself

Join a Support Group

Make a Therapy Appointment

Get Moving

Spend Time with Friends & Family

Who Does the Young Onset Parkinson’s Network Support?

Wed, 04 May 2022 14:07:54 GMT

If you’re reading this, you might be wondering, “Is Young Onset Parkinson’s Network (YOPN) for me?”

Historically, most of the resources and support available about Parkinson’s Disease have focused on the traditional-aged population - those diagnosed later in life, anywhere from their late 50s to 80s. Young Onset Parkinson’s Network (YOPN) was founded as a resource designed specifically to support the Young Onset population (people diagnosed with YOPD before the age of 50) as well as their family members and care partners.

A Parkinson’s diagnosis at a young age means an evolution of symptoms that friends and family members have to adjust to over time, which can be especially difficult to navigate. The roles that patients and their loved ones play in their relationships and each individual’s coping mechanisms are both significant factors in adapting to the ongoing, developing nature of the disease.

A mother with YOPD who is used to managing the day-to-day care of her children and household activities may struggle when her symptoms make these tasks more challenging and she needs to ask for help.

An adult son or daughter with YOPD may find it really hard to allow a parent to help for fear of losing their independence, while their parents may feel hurt about being shut out.

The spouse of a patient with YOPD might experience conflicting feelings about how the diagnosis has affected intimacy in the relationship, and a child whose parent has been diagnosed could be feeling confused and scared.

A friend of someone living with YOPD may not understand or know how to help when the patient has an “off” day.

The Young Onset Parkinson’s Network is built for each of the people in those examples and more. Taking a more holistic approach to the YOPD community, YOPN recognized the unmet need to provide resources, data, mental and emotional support, and comfort to anyone who has had to adjust and adapt to YOPD symptoms. But it goes beyond manaing symptoms. YOPN is about creating a community and resource for those living with YOPD and those who love and support them - helping them embrace their diagnosis and thrive beyond what they thought was possible.

So, whether you're reading this as someone diagnosed with YOPD, or you're a loved one, friend or family members of someone living with YOPD, let this be the answer to your question: Young Onset Parkinson's Network is designed for you.

YOPD vs. Traditional Parkinson's Disease

Tue, 29 Mar 2022 15:30:00 GMT

How is Young Onset Different Than Traditional Parkinson’s?

On average, those affected by Parkinson’s disease are usually diagnosed while in their 60s. Young Onset Parkinson’s Disease, however, is characterized by a diagnosis at age 50 or younger, and affects about 4% of the 1 million people with PD in the United States.

Although symptoms can be similar to those of late onset Parkinson's, Young Onset Parkinson's Disease (YOPD) poses a unique set of challenges during this particular stage of life.

Professional Life

A majority of the Young Onset demographic are either at the beginning of a promising career or currently thriving in their field of work, when diagnosed, which at the initial onset complicates their career progression and current plans. Down the road with progression, many have to put their professional ambitions on hold (or put them away for good) in order to focus on their health.

Family and Relationships

It’s not uncommon for Young Onset patients to have small children or to be planning on starting a family. Not only does it put a strain on the family dynamic and relationship between partners, but it also has a significant impact on kids who are too young to fully understand or cope with what’s happening to their affected parent.

Available Resources

Most of the widespread resources and support opportunities out there are designed for older age groups. Exercise classes are scheduled during the middle of the workday and workout intensity levels are lower. Most articles about discussing your diagnosis with your kids assume that they’re adults and not elementary schoolers — It’s time-consuming to sift through everything to find content that’s actually applicable to you.

Physical Function

It can be embarrassing to experience your body acting like it’s much older than it is. Symptoms like tremors, stiffness, slowed movement, and difficulty walking can leave patients feeling a disconnect between their mental/emotional and physical selves, drawing more unwanted attention to their condition.

The Diagnostic Process

One of the main challenges younger patients face is that their symptoms can mirror other, more prevalent issues in the under-50 group like carpal tunnel syndrome and back issues. This, coupled with most physicians’ hesitancy to diagnose someone under 50, often results in a delayed diagnosis. Time is of the essence, especially for YOPD patients, because the sooner treatment begins, the better.

Treatment Options

While there are plenty of social and emotional struggles that come with a young diagnosis, younger patients are better candidates for surgical procedures and other innovations being developed to treat the disease because they’re less likely to be dealing with other health problems at the same time.

A focus on physical fitness is the only activity proven to slow the progression of YOPD at the time of this writing. The type of exercise that has shown the most promising results is high-intensity cardio workouts sustained for 30-45 minutes at least 5 times a week. Finding an activity that not only meets these parameters, but is also enjoyable to the patient, is imperative for living with YOPD.

Understanding the difference between Young Onset Parkinson’s and traditional Parkinson’s is important because even though the Young Onset demographic is smaller, those affected will live far longer with the disease than their traditional counterparts. This makes it critical to increase awareness and actions in research, treatments and support services that can help delay the progression of YOPD until the day a cure is found.

Young Onset Parkinson’s Network provides programming, resources, and a vibrant community, transforming the lives of those with YOPD and their loved ones. We partner with experts in the field to increase awareness and empower our members to live well and thrive far beyond this unexpected, early diagnosis.

Diagnosis is hard. Finding information specific to YOPD shouldn’t be.

Shared from Eric S. Blog Collection

Wed, 23 Feb 2022 15:26:24 GMT

Stress Kills Parky’s

How to make the sweetest music possible, for as long as possible.

In the workplace I take ownership of my work and I take pride in a job done well. But sometimes I forget that as a Person with Parkinson’s (PwP), I have to pay extra attention to my health. Stress kills Parky’s. To avoid having to learn that lesson repeatedly, always know and pay attention to the instrument you have been given. When taken care of and used as designed, it will serve you well. Read on for a couple of tips for making the sweetest music possible, for as long as possible.

I was starting to think that I might have found a way to overcome the problems I had experienced at work over the years. Problems that started many years before I was diagnosed with Parkinson’s. Problems such as brain fog, trouble finding words, difficulty speaking, apathy, and irritability. Yet, lately many of those problems that effect my motivation, and productivity had once again been slowly creeping back in to my work life. I’ve learned as I often do: the hard way, that no amount of willpower can overcome those problems. Instead, I need to pay attention to this instrument I call my body.

I stubbornly pushed on, refusing to admit that I needed to slow down and take care of myself. The warning signs were there. Two of my closet colleagues even noticed and encouraged me to take it easier. I had been taking on a lot of responsibility. And I had been handling it pretty well…until my Parky body caught up to me, and then the trouble started. At first, the added workload was exhilarating. But as time wore on, my ability to stay engaged began to slip. I found myself getting really really fatigued. As I was slowly getting over whelmed by an avalanche of tasks, my stress levels rose. When I get overly stressed, I experience noticeable changes in my ability to process information efficiently and articulate thoughts. This can add additional frustration and stress, which worsens my symptoms and results in a downward spiral. That’s when productivity and motivation can take a nose dive. Fortunately, I realized (well…admitted) what was happening, and took a step back, reflect, and take corrective actions before any lasting damage had been done.

Why is it that PwP are particularly vulnerable to stress?

Besides missing that extra squirt of dopamine responsible for keeping a healthy brain engaged and motivated, the Parkinson’s riddled body already has to work extra hard to overcome a host of challenges. Problems with stiffness, rigidity, pain, slowness (bradykinesia), speaking problems, spacial awareness issues, and many others. Add stress to the mix, which amplifies all of these problems, it’s no wonder we PwP can struggle with fatigue, apathy, and reduced motivation. Why do I have a tendency to get burned before pulling my hand out of the fire? First, these problems can creep in gradually and be difficult to notice. Speaking for myself, I tend to stubbornly ignore the warning signs. I can’t say for sure if this trait can be attributed to Parkinson’s or not, but I suspect it is common.

The thing is, when I get to the point where, burned out and exhausted, I’ve finally taken a moment to pause and reflect on how I got to that place, I’ve usually already endured quite a bit of avoidable pain. Because fortunately, there are ways to help ensure you don’t end up overly stressed, burned out, or with a completely broken instrument. I offer these 3 tips for PwP to keep stress levels low and productivity up in a fast-paced work environment.

Slow down, take care of yourself – Counterintuitive. But we PwP need to first go slow to go fast. I get it, you want to perform. But if you lose your mind and your body doesn’t work, your productivity is going to suffer, no matter how hard you try. For us PwP, stress levels are inversely proportional to our ability to function. Haven’t you heard? Stress kills Parky’s. So, if I know I need time to decompress I need to do it. Get up, move around, de-stress, and return relaxed and motivated. Make it a priority to move and do the exercise our bodies so badly need to stay functional. Eat right. Be healthy. Don’t worry too much about falling behind in the short term. In the long run, you’re going to contribute more if you take care of yourself first.

Know and respect your limits – Whereas a normal brain can take the ups and downs of everyday life in stride, the parky brain can leave the baffled sufferer struggling with a vast array of potential symptoms. This can make it challenging to maintain a steady drive to continue on and see things through. That’s why you have to understand your limits and heed the warning signs to avoid burning out. Limits are something I often have trouble seeing until I get tripped up by them. I’m not sure if this trait is commonly tied to us PwP, though i suspect it is. Regardless, when we do see warning signs, we have to heed them. When we see our colleagues taking on seemingly limitless responsibility, it can be tempting to ignore our warning signs. Don’t. The limits of the instrument we have been provided are nothing to fret over or be ashamed of. We’re going to be overall more happy, healthy, and productive if we respect our limits.

Communicate with management – Importantly, you are the only one who knows what your limits are. If you take on more work your employer is only going to be all too happy to oblige. So you have to know your limits and communicate them. It may seem somewhat counter-intuitive to discuss your needs with your supervisor. My experience has been that they appreciate you being up-front about it and are happy to accommodate. In fact, in this country the Americans with Disabilities (ADA) provides certain protections. This means that they legally have to provide reasonable accommodations for you to perform the duties of your job. In reality, I’ve never had to invoke the ADA in any requests. On the flip-side, flexibility and accommodation is a two way street. If you want flexibility to address your un-predictable Parky symptoms, be available to work flexibly if needed to finish up tasks.

Once I realized (ahem…acknowledged) that I was getting too stressed out at work, I started to take measures to correct course a bit. Firstly, I started to bow out of meetings that I really didn’t need to be in. While I found them interesting and I was able to contribute, it was overall better for me to give myself much needed time to de-stress…and focus on what I really needed to get done. Secondly, I realistically re-evaluated my limits. For me, some days are just really hard to get into the office. So I’ve been teleworking a bit more. That again leaves me a bit more time to do my exercises at home to connect my brain to my limbs so I can walk and move more freely, feel better, and be less stressed. Finally, I’ve spoken to my supervisor about my challenges and discussed areas where I could use some help. He’s been happy to work with me on getting help to cover down in areas I just don’t have the bandwidth to address.

I really like my job. The important work we do and the great people I work with make it satisfying and fulfilling. Besides the obvious financial benefit, being a productive member of the workforce gives me a sense of belonging and contribution. As a PwP, in order to maintain a sustainably high level of performance out of this instrument I call my body, it’s extra important for me to keep my stress levels manageable, do the exercises that keep my body moving, eat right, and generally stay healthy. Hopefully, I’ll be able to remain a happy and productive member of the workforce for many, many years to come!

Shared from Eric S. Blog Colllection

Wed, 23 Feb 2022 15:08:44 GMT

Twenty Twenty Gratitwo’d

This time of year is a natural time to reflect a bit on the past year and think a little about the next. 2021 was a great year for me. So great in fact, I started to feel a bit “overflowing” with gratitude and have a strong desire to share the wealth a bit. In light of that, I’ve been exploring ways to give back to my community. I’ve already done a little work with brighten-a day and have been looking into using my remodeling and engineering skills to use with habitat for humanity*. More to follow on that but it could be interesting. Read on for some of the highlights of 2021 that I’m most grateful for.

The Coronavirus Pandemic in 2021, as terrible as it has been for many, was the impetus behind the telework movement responsible for making working from home more of a normal thing. Overall, this has been great for me (and many others), in that I can work more in tune with my natural rhythm. Resting when I need it, and working hard when I feel good, even at odd times such as late at night or on weekends. This is particularly beneficial for those of us with chronic illness. In fact, I believe the ability to work flexibly in time and location has been, in part, responsible for my return to a relatively high level regarding work performance. The bold actions I took in 2021 on the professional front have landed me some sizable responsibilities in 2022. It’s going to take planning, courage, and maybe some luck for everything to turn out right. I’m deeply grateful to have a great career.

Regarding this Blog, I wrote “42” posts in 2021. Which is actually kind of an amazing coincidence since, as pointed out in my latest Blog post, “42” is the “The Ultimate Question of Life, the Universe, and Everything.” I managed to write a few good posts in 2021. I hope to build on that going into 2022 as I plan on writing a little less about me. While I’ll keep you updated on how I’m doing, I plan on writing a bit more about other people and/or topics that I believe are interesting or helpful in some way. I’m grateful that my writing sometimes inspires or helps others in some way.

My blog, Facebook posts, and workout antics, caught the attention of some folks in 2021. Besides some friends and I getting a visit from Jimmy Choi, I was interviewed by Mark Desa as part of his “Marked for Glory” podcast series’ Also, I agreed to be photographed for the new Young Onset Parkinson’s Network (YOPN) website. I was very grateful for each of those opportunities. I’m actually extremely grateful for all my friends, Parky or otherwise. You know who you are!

On the fitness front, I achieved my goal of deadlifting 450 lbs. I did not (yet) achieve my goal of bench-pressing 300 lbs unassisted….I’ll probably get there at some point. If not though it’s no big deal. At 42 I’m not really old but on the other hand general fitness is a more important endeavor anyway. So for 2022 I plan on mixing it up a bit more with more climbing, mountain biking, and HIIT style training. I’ve enjoyed getting more involved with the Parkinson’s specific climbing group at SportRock and plan on building on that. Whatever I do, fitness will always be a non-negotiable part of my efforts to keep Parkinson’s at bay. As effective as exercise is in maintaining mental health and maybe slowing Parkinson’s progression, I’m incredibly lucky to enjoy exercise as much as I do.

I took up photography as a new hobby. My initial work was some steamy portraits of my wife during our vacation in Puerto Rico. Since that time, my interests in photography have expanded to astrophotography. Encouraged by some initial success photographing, Jupiter, the milky way, as well as the Andromeda Galaxy, my enjoyment and interest in photography, especially of the cosmos, has continued to grow. My latest success was a hard earned image of the Pleiades Star Cluster just a few nights ago. I feel lucky to live in a time where technology allows us to use relatively available tools to peer deep into the night sky.

In 2021 I was able to do quite a bit of travelling despite COVID. We visited my brother and his family in Asheville, my parents quite a few times, went to Va Beach (twice), once with friends of ours. Went fossil hunting in a couple of different parks, did some photography events in West Virginia, Pennsylvania, and Georgia, and even went to Puerto Rico. I enjoyed and appreciated each of these trips.

Above all, being a family man is really one of my most important and overall appreciated roles. In 2021 I spent a lot of time running kids to swimming, Jui-Jitsu, track, and other activities. Volunteering at the kids swim meets was unexpectedly fun and exciting. I plan to continue to be fully involved with my children’s intellectual, athletic, and emotional development. Keeping up with their school activities, sports, and just being there when they need me is all part of my favorite job: being a Dad. I love them SO much and am getting is as many hugs as I can before that gets weird. I love my wife dearly and am sorry that I get so Parky at times. But you have to admit it IS a little funny when I have to run everywhere (festination).

Last year, I was inspired to design an elevator for our treehouse. My mother and mother-in-law have not been up in the tree-house because the rope ladder is a bit of a challenge. My dream for 2022 is to celebrate Thanksgiving in the treehouse with my parents, my in-laws, and my brother and his family. I designed the elevator a few months ago and am waiting for warmer weather to build it. I feel fortunate to have the resources to complete such an undertaking.

While Parkinson’s is obviously still a big part of my day to day experience, I can manage it while not letting it interfere very much with my life. I still often have problems walking. I still have problems with fatigue. My morning ritual is to creep downstairs like a 90 year old, take my meds, then sit down for 20 minutes or so while the medication goes to work. Amazing, am I right? What would happen if my supply of pills somehow became unavailable? Maybe this is one of the reasons that gratitude usually seems to come very easily to me. Daily reminders of how very precarious life is can do that I guess.

2022 will probably be full of ups and downs and all kinds of things to be grateful for. There are so many things that are going to happen my head almost spins when I think about it. But the final thing I’ll mention I’m grateful for is the fact that regardless of how much I fret about things, they always seem to work out in the end. So while it’s easy to get overwhelmed by all the things that need to get done, it seems that just doing everything you can while trusting things will turn out ok has been working well for me so far. I’ll be heading into 2022 with plenty to be thankful for.

What are you grateful for today?

Welcome Guest Blogger, Eric S. aka Parky Superman

Wed, 23 Feb 2022 14:50:32 GMT

Fortress of Solitude

Have you ever wondered just who, “Parky Superman” is? My guess is, it’s probably not one of the things keeping you up at night. But I’m going to tell you anyway because I think it’s at least a little interesting. I am a littles biased, I know. But by the end of this post though, I hope you’ll agree that my story is at least a teensy bit interesting. To truly understand the story of Parky Superman, we have to journey back to my teen years.

In my youth I had been athletic, playing football, running track, and participating in several other sports. On the football field I was known for my speed and strength. Of course, to my younger brother, who is eight years younger, I was practically Superman. My brother and his friends occasionally referred to me by that name in playful reverence. Back then, due to my height, broad shoulders, facial structure, and hair curl, I actually looked a little bit like Superman.

Something that I don’t talk about much is the fact that back in my high school days I was often quite depressed, and suffered from what I now recognize as phobias and anxiety. I had a lot of trouble connecting with people and spent a lot time alone. I recall being very critical of myself on many fronts but non more so than in sports. I had all the makings of an exceptional athlete (I thought). I was big, almost 200 lbs. Also, I was fast. My father had been a very successful college 800m runner in his college years and I inherited some of that speed. I was quite strong too. Moreover, I had a solid work ethic and worked hard at improving my strength, conditioning, and skills in any athletic pursuit. But I always had an inexplicable lack of coordination, particularly on my right side. Also, I felt like there was this strange dichotomy inside me. On the one hand, I worked hard (I thought) at any of my athletic pursuits. On the other hand, I seemed to suffer from a weird lackadaisical attitude. It was as if I thought i wanted to do something but when I actually tried to do it, my body would behave as if I didn’t. It was confusing and at times demoralizing. Was this tendency for anxiety, trouble with coordination, subdued personality, and general lack of enthusiasm a result of low levels of dopamine? Were these early Parkinson’s symptoms? It seems possible.

Regardless of the cause, there was a marked mismatch between what I thought I was capable of, and how I would actually perform. It just seemed like my body would always let me down somehow, leaving me disappointed, embarrassed, or even ashamed. I remember telling my father that it seemed like the harder i tried at something, the worse I got at it. By the time I graduated from high school, besides a brief stint running track at Virginia Tech as a freshman, I was ready to move on from school athletics. Though I’ll never know for certain whether it was due to Parkinson’s or not, I believe that those humbling early experiences in athletics helped shape me into the unique person I am today.

It was only a few short years later, in my early 20s that I realized that something was affecting my gait to the point that I had to find a new way to stay in shape. It wasn’t exactly that I couldn’t run, it was just that there was a weird…abnormality that caused me stiffness and pain that only got worse the more I ran. So I turned to Mountain Biking to stay fit. In the nearly two decades that followed, I experienced a steady decline. A decline that I was fully aware of. Over the years I went to many doctors for various aches and pains and problems with my feet. None figured it out. I recall on my 30th birthday, I jumped on the treadmill at the Gym and reassured myself that if I stayed fit, by my 40th Birthday, I would be free from these weird aches and pains. But things only got worse. I dealt with it as best I could. Until I couldn’t.

When I was diagnosed with Parkinson’s a little over three years ago at 38 years old I was at the lowest point physically and mentally of my life. I was still somewhat strong as I have always worked out. But Parkinson’s had ravaged my body and mind over many years to the point that I felt like i was wasting away. In those terrible days, it was all I could do to get myself out of bed. Mentally, I was beginning to lose hope as it seemed every movement took tremendous effort. Physically, my body was awkward and felt foreign. Fighting me for every step or reach. Ironically, because it was Parkinson’s, besides being a little thinner than my normal weight and looking miserably tired all the time, it was outwardly difficult for anybody to notice that anything was seriously wrong.

After taking that first Sinemet pill, it was as if my body had suddenly woken up from a very long slumber. Suddenly, in command of my limbs again (at least while the medications lasted) I found that working out took on a whole new meaning. It made my medications last longer, improved my coordination, helped me generally move more normally.

My brother, having not called me Superman in decades, now dusted off the old name, with a twist. “Parky Superman” is what he called me to encourage me to fight my Parkinson’s symptoms. Imagining myself as a Superhero helped me to drag myself out of one hell of a deep, dark abyss.

I became Parky Superman, and Parky Superman saved me.

While Eric Slominski would surely falter, Parky Superman prevails. He faces his arch nemesis Parkinson’s calmly, with intellect, strength and determination.

Parkinson’s is my Kryptonite. Despite my strength, my grit, and determination, by stark contrast Parkinson’s makes me weak, slow, and vulnerable. But I can use this to my advantage.

The magnitude of the discrepancy between my capabilities when “on” (not affected by Parkinson’s), vs when “off” (affected by Parkinson’s) serves as a powerful way to teach about Parkinson’s. Parky Superman is selfless enough to show his vulnerability, and ultimately spread awareness of this insidious disease.

While “standard” Superman’s normal identity Clark Kent, works as a Journalist for the Daily Planet. I report on my unique struggles through my “Parky Perspective” Blog. Again, spreading awareness in hopes that one day, my arch nemesis, Parkinson’s will be no more.

Eric Slominski still exists. He’s a pretty nice guy when the going is good. But from now on, when things get tough, when Parkinson’s threatens to ruin my day, I’m Parky Superman.

And I always will be.

I can at times tend to hide away in a special place. Particularly when I’m silently fighting a battle that few truly understand. It’s during those times you would likely find me taking refuge, in quiet contemplation, gathering strength to fight my arch-nemesis Parkinson’s. I’m referring of course to my Fortress of Solitude.

From Living Her "Best Life" to YOPD Diagnosis: How Founder Anna Grill Found Her Calling

Thu, 03 Feb 2022 20:51:59 GMT

At 38, Anna Grill was living her “best life.” She was enjoying a loving relationship with her husband, crushing it at work, and happily maintaining her responsibilities as PTA President at her daughters’ school. She was “Super Mom,” and loved every minute of it.

In the fall of 2007, friends and family noticed that Anna had developed a slight tremor in her pinky finger. She made appointments with various neurologists; one who proclaimed she had Parkinson’s Disease with very little prior testing, and another that was hesitant to give her that same diagnosis because of her age — she was too young.

Eventually, Anna was referred to a specialist at Johns Hopkins who ordered an F-Dopa scan (which was still in its beta-testing stage at the time). When the scan confirmed she had Parkinson’s Disease, she felt a strange combination of dread and relief.

“I was upset for a minute, but then I decided that I have to keep going and I still have a lot of time.” — Anna Grill

And keep going, she did. Anna’s mission in starting the Young Onset Parkinson’s Network is to establish a space with the support and resources that she didn’t have at the time of her diagnosis.

“People are really open about having cancer and other things like that, but there’s this aura of shame around Parkinson’s because it’s neurologic and you know it’s going to get worse. You don’t want sympathy, and you don’t want to be a burden, so it feels like there’s never really a good time to talk about it — and there’s certainly collateral damage from not talking about it,” she says.

The Young Onset Parkinson’s Network is a place where not only people who have been diagnosed with PD, but their care partners, friends, and family members who are also affected, can prevent that collateral damage by talking about it without shame or judgment.

With resources ranging from information about managing symptoms to balancing the events of a young life with an “old” disease, Anna hopes to show others affected by Young Onset Parkinson’s that they’re not alone, and encourage them to continue living life to the fullest.