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

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

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

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.)