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

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

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

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

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

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

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

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

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

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

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

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

Our world was rocked.

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

Exercise is Crucial — Start Early

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

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

Better Medication Management and Diet Go Hand-in-Hand

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

Holistic Approaches to Treatment Matter

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

Mental Health is Just as Important

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

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

Work with a Team — Not Just One Doctor

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

Routine is Vital

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

Get Rid of Chemicals in Your Life

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

The Power of Social Support and Connection

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!