Turning a Diagnosis into a New Purpose

I was diagnosed with Parkinson’s disease (PD) in 2019 after my wife noticed a tremor in my left hand. Like many people, I left that initial doctor appointment with more questions than answers. For a period of time, I focused on following medical advice, maintaining my routine and not projecting too far into the future. I believed I was managing Parkinson’s, but in reality, I was largely reacting to it.

Over time, it became clear that a passive approach wasn’t neutral — it had consequences. I noticed gradual changes and realized that waiting for Parkinson’s to dictate next steps limited my options. That marked a shift in how I approached the disease. I decided to take a more active role, both in managing my own health and in contributing to broader efforts aimed at improving outcomes for people with Parkinson’s.

One of my first focus areas was exercise. As I began educating myself, the Parkinson’s Foundation resources on movement were critical. Their recommendation to incorporate four types of exercise — aerobic activity, strength training, balance and agility work, and flexibility — gave me a clear, practical framework. It became the foundation of my exercise plan. I used it to structure my weekly training, build variety into my workouts and ensure I was addressing multiple aspects of movement.

From that base, I began setting goals and layering in events as a way to stay consistent and accountable.

Over the past few years, that approach led me to complete seven triathlons, eleven Spartan obstacle course races and three races up the Empire State Building stairs. These events weren’t about competition. They provided structure, measurable milestones and a reason to remain engaged over the long term. Training for events helped translate an abstract recommendation (exercise is important) into a concrete, sustainable practice.

With each event, I gained confidence — not only in my physical capacity, but in my ability to influence my own trajectory. That confidence began to shape how I approached other aspects of living with Parkinson’s.

I took a broader focus on wellness. Again, Parkinson’s Foundation information played an important role, particularly around nutrition, sleep, stress management and overall lifestyle balance. None of these elements are cures, but together they help tilt the playing field in my favor. I became more intentional about what I eat, how I recover, how I manage stress and how consistently I support my body and brain. The goal wasn’t perfection; it was building habits that support resilience over time.

Advocacy followed. I became involved in efforts supporting the National Plan to End Parkinson’s Act, meeting with the staff of seven U.S. Senators. Three ultimately committed to supporting the legislation. That experience demonstrated how individual stories, shared clearly and persistently, can influence policy. It also reinforced my belief that advocacy isn’t limited to professionals — it’s accessible to anyone willing to engage.

Learn more about Parkinson’s-related Policy and Advocacy

At the same time, I became increasingly involved in Parkinson’s research. What began as curiosity developed into active participation. I enrolled in studies, learned directly from researchers and gained insight into how essential patient involvement is to scientific progress. Research provided clarity and purpose, and it led me to become both a Parkinson’s Foundation Ambassador and a Research Advocate — roles that enable me to help ensure patient perspectives are reflected in the work shaping future treatments.

Looking back, I realized I hadn’t just been responding to Parkinson’s. I had been building a framework for how to live well with it.

Once that became clear, I felt a responsibility to share what I had learned. It all led me to write a book, Living Parkinson’s, and to create livingparkinsons.com as a place to organize information, resources and lessons learned along the way. My goal was to document practical strategies — grounded in lived experience and supported by science — that together form the core of an actionable plan anyone can adapt. Rather than offering prescriptions or guarantees, the focus is on helping people take ownership of their disease and actively fight back in ways that fit their own circumstances.

This journey I’m on has been about agency. Parkinson’s changes life, but it doesn’t eliminate the ability to influence outcomes. Whether it’s exercise, wellness, education, advocacy or research participation, each step builds momentum.

Parkinson’s has altered my story, but it hasn’t determined its direction. My journey isn’t defined by a diagnosis — it’s defined by how I’ve chosen to respond. If sharing that perspective can help someone else take a more active role in their own journey, then the effort has been well worth it.

Help champion policy changes that make life better for people with Parkinson's. Get involved today. 

Finding My Rhythm

For years, I lived with a secret. When you are diagnosed with Parkinson’s disease (PD), there is this common, almost overwhelming urge to hide it. Whether it’s the fear of not being accepted or the dread of people looking at you with pity, many of us fight to act “normal.” Trying to mask a diagnosis that has become a huge part of your life is exhausting. It’s hard to be your authentic self when you’re hiding.

I was diagnosed at age 51 in February 2021, right in the heart of the pandemic. At the time, I was working full-time as an educator, leading others through the trials of remote and in-person school. The diagnosis felt like a gut punch during an already impossible season. I kept my diagnosis a secret for over a year — I didn’t even tell my family. I had back surgery during the same time to relieve sciatica, which also caused me to have difficulty walking. This made it easier to hide my symptoms as the sciatic pain masked my rigidity.

Coming out of the pandemic and back into reality, the strain of hiding continued. Eventually, I began to let people in and felt a burden lift. I discovered that people are often far more supportive and less judgmental than I thought. Although I don’t tell everyone I meet that I have PD, I’m becoming more open about my journey, hoping that by sharing my story, I can help someone else live their authentic life a little easier.

Adapting and Moving

While Parkinson’s has affected my left side and made handwriting difficult, I haven't let it stop my voice. I’ve discovered that speech-to-text is a game-changer. It’s more efficient than my old way of writing, allowing my thoughts to flow quickly and freely.

I’ve also learned that movement is medicine. My mobility can feel constrained, so working out is a non-negotiable part of my day. If I skip a workout, I feel the difference. The breakthrough for me was finding a specific Parkinson’s exercise group. Not only has it greatly enhanced my physical ability to function, but it has provided me with a network of "warriors" who are on this same path.

The Power of the Tribe

What keeps me happy and hopeful? Connection. Spending time with family and friends is the best way to stay healthy, but connecting with my "PD tribe" is critical. There is a deep, unspoken understanding that exists between us. Attending the 2025 Moving Day Chicago was an uplifting experience — seeing so many people thriving and living well was the best kind of fuel for my spirit.

When I got a call to participate in the new Parkinson's Foundation PSA, I realized this was a chance to connect with even more people in the PD Tribe and help make others feel less alone. 

My Advice: Find Your People

If you are new to this diagnosis, my biggest piece of advice is this: Find your people. Whether it’s an illness or any other life challenge, finding your tribe is essential. The bond you’ll form with those who truly understand your journey will give you a strength you didn't know you had.

Five years into this journey, I’ve learned that staying active — physically, mentally, socially and spiritually — makes all the difference. Don’t hide; reach out. There is so much life to live!

Find your Parkinson’s community when you connect with your nearest Parkinson’s Foundation Chapter. Find your Parkinson’s Foundation Chapter and follow us on social media.

I’ve waited six years to tell my story. I was diagnosed with Parkinson’s disease (PD) in February 2020, which meant I was navigating this disease and the COVID pandemic at the same time.

I was fortunate to be able to work from home and to have access to health care via telehealth. This gave me an opportunity to slowly adjust to my diagnosis. Sharing that I had Parkinson’s was difficult for me. I told my family and close friends, and eventually trusted colleagues, but I struggled to find the right words.

From the moment I was diagnosed, I made it my mission to learn about Parkinson’s disease and find out what I could do to stay healthy and active for as long as possible. That research began with the Parkinson’s Foundation website.

As someone who has always prioritized fitness, I was relieved to learn that exercise is one treatment that might help slow the progression of PD. I found specialized trainers who work with people with neurological disorders and joined both group classes and one-on-one sessions. Exercise improved my balance and strength and helped me feel better overall. A surprise benefit was discovering a community of like-minded peers who stay active and live with Parkinson’s.

Early on, I formed a team and participated in Parkinson’s Foundation fundraisers such as Moving Day and Parkinson’s Revolution. It felt good to walk or cycle with friends and raise money for a cause that matters deeply to me. I also took on other volunteer roles, because being involved with the community and helping others with PD helps me cope with the disease.

Six years after my diagnosis, I try not to let Parkinson’s disease define me, but I can no longer pretend it does not slow me down.

In 2026, I was honored to participate in the Parkinson’s Foundation PSA to help spread PD awareness. I chose to participate in the PSA because I want people to know that there are things you can do manage this disease and that being involved with the community and helping others with Parkinson's helps me live well with PD.

I am grateful for the support I have from friends and family, and I try to pay it forward by being available to people who reach out to me when they are newly diagnosed and overwhelmed. I mostly listen and then direct them to resources that have helped me.

Explore the many ways you can get involved with the Parkinson’s Foundation to help spread PD awareness.

I was diagnosed with Parkinson’s disease (PD) in 2018. Before my diagnosis, my left arm would not swing, and I shuffled around the house, dragging my left foot. I used to stoop, but now, with the help of exercise and medication, I can swing my arms as I stand tall and walk with big strides. My movement symptoms are under control with exercise and medication, and most of my new acquaintances don’t even realize I have PD.

I have a quiet voice that has become quieter with Parkinson’s, so I make a conscious effort every day to speak with intent. I completed the 10-week Speak Out program with a speech-language pathologist, and now I meet weekly on Zoom to continue working on my voice. It’s more than just speech—it includes reading and cognitive exercises that keep my mind active.

The thought of PD dementia scares me, so I constantly challenge myself with brain puzzles and word games to stay sharp.

Exercise has truly changed my life. I go for a brisk walk every morning because mornings are my best time of day. During the summer, I love swimming in the pool, and throughout the year I work out at the gym with friends. Three times a week I attend Rock Steady Boxing (RSB) for a vigorous, high-energy workout that pushes both my body and mind.

When I joined RSB, I felt like I had already lost some of my strength, my rhythm and even the ability to jump. But boxing gave all of that back to me. I learned the combinations, moved through obstacle courses, jumped rope again and even found myself skipping to the beat of the music. I was hooked — pun intended.

Now I’m a coach for Rock Steady Boxing, and one of my favorite parts of class is leading dance warm-ups. Music and movement bring me joy. I also completed the BIG physical therapy program and still go through it semi-annually. Staying intentional about my routines keeps me independent — I’m grateful to still be able to drive and manage daily life on my own.

I stay involved with the Parkinson’s Foundation through Moving Day Phoenix, where I serve on the volunteer committee. I’ll never forget my first Moving Day walk. I didn’t know what to expect, but seeing so many people gathered together for one purpose was inspiring. It gave me hope, educational opportunities and new ways to adapt. That experience reminded me that Parkinson’s is manageable if you’re intentional about what you do.

A few years ago, I did genetic testing and was relieved to learn I have no known PD markers. It’s comforting to know it may not be passed on directly to my children.

I may have been on the road to somewhere else, but my current place is still beautiful.

I have wonderful friends, workout groups and support systems that keep me grounded. As I often remind others: Parkinson’s isn’t the end — it’s just the beginning of a new normal. And I intend to make this new normal worthwhile.

Exercise is essential for people living with Parkinson’s. Find your nearest Parkinson’s Foundation Chapter or call our Helpline at 1-800-473-4636 to explore exercise PD exercise classes near you.

Bonnie and Derek Bandeen met on the first day of their training program at Morgan Stanley in New York in 1985, where they hustled, collaborated, fell in love and succeeded — always as a team. Following a wedding, four kids and two remarkable finance careers built over three decades (and two continents, as they moved their family to London in 1993), the couple was looking forward to a new chapter: retirement in 2018.

They temporarily relocated to Boston to participate in the Harvard Advanced Leadership Program and happily settled into “student life” while finding their rhythm as empty nesters. Still, Derek was puzzled by a slight, involuntary tremor in his left hand. Though he had some inconclusive tests conducted; he suspected it was a temporary nerve issue.

Derek saw a neurologist at Massachusetts General Hospital, where he was asked to do a few finger exercises and walk down a corridor. Within five minutes, the doctor diagnosed him: “You have Parkinson’s.”

The delivery of this life-changing news, at the age of 55, was a punch to the gut. Standing outside Mass General alone, clutching the single brochure he had been handed, his unadulterated shock gave way to overwhelming fear. “How am I going to tell Bonnie?” “How am I going to tell the kids?”

Bonnie, too, was stunned, but she wasn’t deterred. With her characteristic unflappability and immutable resolve to move forward, she set out to make a plan. Back in New York, where she and Derek live, Bonnie sought to establish what support they needed and accumulate resources. She wanted to find a place for them to visit, in between the doctor appointments, that would mitigate Derek’s isolation and help them gain control.

And so it began. For the Bandeens, an important port of call was the Parkinson’s Foundation, where they found helpful information on treatment options, nutrition tips and a host of useful podcast episodes. “Parkinson.org was among the first places Derek turned to for information,” Bonnie said.

Other answers, however, did not so easily surface. An avid exerciser, Derek started working with a trainer, but he was eager to partake in group fitness that challenged him and accommodated for his PD. Many of these classes were only available online or were scattered over the city.

Explore Care Partner Resources

Meanwhile, Bonnie met some couples who were further along their Parkinson’s path and found these care partner connections to be invaluable. “We quickly realized how vital community is when it comes to managing Parkinson’s,” Bonnie said. “We’re social people, but this disease requires a different type of village, where others understand what you’re going through and can offer support every step of the way.” 

As the couple scoured the internet for what to do following a Parkinson’s diagnosis, they uncovered a sizeable gap between their growing needs and how to meet them. Where could they actually go? What they wanted was a facility that offered fitness, wellness, community and support for people with Parkinson’s and their care partners, all under one roof.

With this mission in mind, the Bandeens launched the Parkinson’s Wellness Foundation in 2024. “We certainly didn’t plan this,” said Bonnie. “But we committed to build the community center we wished we could have turned to seven years ago.”

The Parkinson’s Wellness Foundation launched The Bandeen Center in midtown Manhattan, the first dedicated space in New York to offer fitness and holistic support especially for the PD community.

“We couldn’t have undertaken this project without The Parkinson’s Foundation and other veteran organizations that directed us to the right stakeholders, tirelessly reviewed our plans and helped us shape a working model of a facility that could truly better the PD community,” Bonnie said.

For Derek, The Bandeen Center is the answer to his Parkinson’s-fighting, strength-conditioning hopes and dreams. “There are moments, amid an intense boxing session or a tough workout, when I actually forget that I have Parkinson’s,” Derek said. “Everyone who is battling this disease deserves these moments too. All of us should be empowered to live our best lives in spite of PD.”

Starting in February, The Bandeen Center offers a full schedule of exercise classes and community-based activities in its cafe to support mental wellbeing. The Center’s opening is an exciting moment for Bonnie and Derek, whose retirement plans rerooted them down a difficult path to an unexpected, exciting destination — full of promise and hope.

“Friends, acquaintances, and friends of friends are calling me to tell me about someone they love who was just diagnosed with PD,” Bonnie said. “The first thing I always tell them is to get their person to exercise, eat well, and connect with someone in this amazing community. The Parkinson’s Foundation can help with that, and the journey is so much better when you are accompanied.”

Find your Parkinson’s community and local PD-tailored exercise classes when you connect with your nearest Parkinson’s Foundation Chapter. Find your Parkinson’s Foundation Chapter here.

I began a health transformation in my 50s and lost 108 pounds. At 56, I completed my first full marathon. Life felt strong. I felt capable. I felt in control.

Then at 58, everything changed.

My leg started shaking — first for weeks, then for months. I eventually went to a neurologist. Parkinson’s disease (PD) was never even a thought in my mind and hearing the words “tremor-dominant Parkinson’s” stopped me cold. April 16, 2025 became a date I’ll never forget. I cried in the parking lot after that appointment.

The first 30 days were hard. I worried about what my future would look like. I wondered what I would lose. I questioned how much of my life Parkinson’s would take.

Then I hit a turning point.

I decided Parkinson’s was going to be part of my life — but it was not going to run my life.

I focused on what I could control. I built my approach around four core pillars: exercise, a positive mindset, a supportive community and faith.

Exercise became non-negotiable. Movement is my medicine. Whether I’m swimming, biking, running, lifting or stretching, I show up. Some days are strong. Some days are hard. But I move — because staying active gives me strength, confidence and hope.

I also chose to lean into community. One phone call to the Parkinson’s Foundation led to several meaningful connections. I raised over $10,000 for Moving Day. In late 2025, I became a Parkinson’s Champion. I'm hopeful to serve on the board for the Carolinas Chapter. I’ve learned that fighting Parkinson’s alone is the hardest way to do it. Don't hide behind the diagnosis.

I turn 60 in 2026, and I’m a triathlete. I’m currently training for my biggest race of the year — the Augusta Ironman 70.3. That’s a 1.2-mile swim, a 56-mile bike ride and a 13.1-mile run. I don’t train to prove anything to anyone else. I train to remind myself that I’m still capable. I train to inspire others especially those with limitations.

I also wear custom shirts and hoodies with my diagnosis date on them. They help start conversations with complete strangers. Those conversations create awareness, connection and understanding. It’s one small way I choose to turn my diagnosis into purpose.

If you’re living with Parkinson’s, my advice is simple: stay active as long as you can. Walk. Stretch. Use resistance bands. Do what you can — then do it again tomorrow.

And if you’re a caregiver, hear this: you matter too. Take time for yourself. Taking a break isn’t quitting — it’s refueling.

Parkinson’s changed my path, but it didn’t take my drive, my purpose or my belief in what’s still possible.

And I’m not done yet.

Get involved with the Parkinson’s Foundation in a way that works for you. Find your local chapter and explore our Get Involved page.