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!

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! ?

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.

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.) 

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/ 

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. 

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 

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. 

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. 

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.