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.

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 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

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