I was a globe-trotting, corporate science professional with a year-round list of active hobbies — cycling, fly fishing, hiking, backpacking, bird hunting and cross-country skiing to name a few. My earliest Parkinson’s disease (PD) symptoms were subtle and wouldn't have raised suspicions to anyone not already thinking about PD. First, I experienced difficult bowel movements and odd toe and foot cramps. At 50 years old (and seemingly out of nowhere), I developed a foot drag which I attributed to a disc issue.

At 58 years old, my local neurologist added the term Parkinsonism to my health profile. Two years later, a different doctor — this time a movement disorders specialist — diagnosed me with Parkinson’s with 99% certainty. He asked me why I waited so long to see him, and I responded that I thought my symptoms were a result of a lower back problem. In truth, I was embarrassed and afraid of receiving a PD diagnosis. I thought it meant my life as I knew it was over.

Over the next decade, I would experience all the more life-changing impacts of Parkinson’s. To my wife and friends, the symptoms had been obvious. I continued to blame my back until I turned 60, when the symptoms progressed so fast that I was unable to ride a bike or wade a rocky trout stream.

After I began responding to PD medication, I fought back with a vengeance. I enrolled in a yoga class to counter the stiffness. I resumed my guitar practice to work on manual dexterity. I joined a table tennis league to improve agility and reflexes. I got on my road bike, and by late summer I was back to pre-PD form. I competed in a fly-fishing tournament and waded rushing mountain rivers. Nine months after I my diagnosis, my neurologist told me that if I weren’t his patient, he wouldn’t suspect I have Parkinson’s. I was back!

It hasn’t been all roses since then. I live in Central Pennsylvania and there isn’t a movement disorders specialist within 100 miles, so I’ve figured out a lot about managing the disease on my own. I subscribed to a Parkinson’s research journal to stay up to date on medical advances. I monitor my symptoms and ask for medication tweaks when things aren’t working right. I continue to modify my physical therapy program when something stops working or a new symptom develops.

I discovered the Parkinson’s Foundation about a year ago. Their online resources helped me make sense of my PD history. I watched remarkable videos that opened my mind to new knowledge about the disease. I wish I had known about the Foundation ten years earlier.

I recently became a Parkinson’s Foundation Ambassador. I am retired now and have decided to devote my volunteer efforts to helping the PD community in Central Pennsylvania, which has low access to specialized Parkinson’s care. I am engaging with senior care facilities by delivering educational materials, familiarizing staff with the Parkinson’s Foundation website and connecting facility leadership with the organization so they can benefit directly from the excellent resources the Foundation provides. 

Nobody should have to navigate this disease on their own.

You can make a difference in the PD community. Become a Parkinson’s Foundation Ambassador today.

Six years ago, I was a 53-year-old man, in great shape, a successful realtor and caregiver to my partner of 25 years. I started noticing changes in my ability to run, walk and write and I suffered from a tremor in my right hand. I was diagnosed with Parkinson’s disease (PD). Having so many responsibilities already, focusing on Parkinson’s was not at the forefront of my life. After my partner passed away, I realized that I had let the PD symptoms take over.

Everything I read focused on the fact that Parkinson’s was a progressive disease, and that I wasn't going to get any better. I wasted the next 4 years, having given up hope. I woke up one day and decided that I wasn't going to go down without a fight. While searching online for information about PD, I came across the Parkinson’s Foundation website. The Foundation’s resources helped me learn more about PD symptoms. From there, I decided that instead of looking at Parkinson’s symptoms as a whole, I could break them out individually and slowly work on getting better. 

My worst symptom was stiffness in my right leg and foot. I could barely walk a half block without experiencing pain. I had a gym at my disposal but quickly realized that due to my symptoms, the treadmill was not an option for me. I then noticed the rowing machine — specifically the foot straps. The straps would keep my foot from "wandering" so I could get in a workout.

Fast forward six months later: I lost 13 pounds, and I am rowing 5,000 meters a day without pain! It took a few months to get over the hump regarding pain. I no longer have tremors. I look great for a 58-year-old man. I walk 2 hours every morning and have taken up juggling to enhance my hand-eye coordination!

Through friends and family, I have met several folks with PD since my diagnosis and have shared my story with them. My story has given them hope for a more normal life, and they can see the proof — in me!  I have never been in better shape, and I don't have as many obstacles to deal with on a daily basis. Most people can't believe I even have Parkinson’s. Exercise has been a miracle in taking control of my symptoms and living a better life. I even purchased a three-level townhome, without an elevator.

I continue to counsel people who are newly diagnosed with PD and am happy to keep them from making the mistakes that I did.

Get moving with our PD-tailored exercise videos. Explore our Fitness Friday workouts.

Engagement is my key to wellness with PD.

Getting a Parkinson’s disease (PD) diagnosis is a sobering moment, but fear and backing away from what worries us never works in the long run. What’s sobering, or frightening even, is the uncertainty about what it means to have a progressive, incurable movement disorder. Will I be unable to run? Shuffling along soon? Unable to drive? Mute? When does all this start happening?

Answers to those questions still linger, but after a few deep breaths it became clear that these worries were not going to be faced, say, next week. The most immediate challenge was to convert all this external tremor and internal commotion into some kind of new normal so that I could get on with the business of living well. My key to moving forward has been engagement.

Engaging with friends

Letting friends in on this new development in life has been a source of support moving forward. The support of friends and family provokes the experience of being known for who you are, which for me includes my private experience of the irritating tremor or the latest non-movement symptom. Being open about my Parkinson’s diagnosis has required transparency with friends in order to be known and move forward living well.

Engaging with the care team and the PD community

I live in Grand Rapids, Michigan, where I have access to Corewell Health’s Parkinson’s multidisciplinary team, a program that the Parkinson’s Foundation has designated one of the first Comprehensive Care Centers in the U.S. I feel lucky. This Care Center has served as a gateway to new friends and other communities formed by people with Parkinson’s. The care team invited me to join the PD advisory council to help grow and improve the multidisciplinary program and urged me to help facilitate discussion in our monthly educational meetups.

Engaging with the research community

After these few deep breaths, I decided to participate in a clinical trial. As a participant in a year-long trial, I learned about Brain Storms by John Palfreman, an excellent history of PD research. I also learned about the Grand Challenges Annual Meeting at the Van Andel Institute. There, I met medical professionals, graduate students, clinicians and others doing research on Parkinson’s, as well as staff from Cure Parkinson’s in London. These relationships have been a source of inspiration.

Engaging with the exercise community

I was engaged with a local trail running community for more than a decade prior to my diagnosis in late 2021. Weeks after my diagnosis, I connected with one of the Davis Phinney ambassadors who urged me to start weightlifting to add to my routine as a trail runner. At the gym, I have met a few others with Parkinson’s and made new friends without PD who are lifting and moving like me: to improve their quality of life. My trail running now includes my neighbor’s dog Khloe, one of my best friends and supporters.

Engage with the Parkinson’s Foundation to live well with PD. Find expert care and local resources in your area.

When I was diagnosed with Parkinson's disease (PD) in the fall of 2019, I was devastated. As an occupational therapist for over 30 years, I knew how debilitating Parkinson's could be and how the trajectory of my life would be changed forever. However, once I came to terms with my PD diagnosis, I vowed to do everything in my power to slow the progression of this disease.

As someone who enjoys information gathering, I set upon learning as much as I could about Parkinson’s. I scoured the Parkinson's Foundation website for information about being newly diagnosed and viewed countless webinar recordings on subjects such as nutrition and diet, exercise, medication and research. I also enjoyed reading the stories of other people living with PD and getting inspiration from their experiences.

After learning more about PD, my routine included regular check-ins with my neurologist at NYU Langone Medical Center, a Parkinson’s Foundation Center of Excellence, as well as managing my symptoms with medication. In addition, I embarked upon an exercise regimen 4 to 6 days per week which included strength training, kickboxing, Pilates and yoga.

However, when my husband and I decided to take dance lessons to prepare for our son's wedding, I wasn’t sure if Parkinson’s would interfere. Would the dystonia in my feet slow me down? Would my decreased balance interfere with my ability to negotiate turns? Would my fear of falling affect my ability to move? Would my bradykinesia interfere with the fluidity of my movements? However, with the support of our very talented and patient instructor along with the rest of the team at the Fred Astaire Dance Studio in Marlboro, New Jersey, I was able to dance the night away at our son’s wedding.

One year after we started our dance journey, my husband Nick and I danced a spotlight foxtrot at our studio's monthly dance party. It was terrifying... and exhilarating! I had done it! Despite my fears and lack of confidence in my ability as a person with Parkinson’s disease, I had performed a (mostly) fluid and graceful foxtrot in front of a room full of dancers with my husband. The video of us dancing received over 15,000 views on social media!

My husband and I have recently set a new goal of dancing a spotlight tango and learning to salsa. I hope to continue to dance for many years and to inspire other people living with PD not to let their fears hold them back!

Listen to our podcast on dance therapy and Parkinson’s.

Parkinson’s disease (PD) has made me a better basketball player — and a better bicyclist, birdwatcher and bowler. I know that sounds counterintuitive. With a degenerative brain disease, after all, things worsen over time. Right? In the long run, perhaps so.

In the years preceding my diagnosis, however, the churning currents of daily responsibilities — mainly job-related — carried me away from healthful activities that I enjoyed in my younger years.

Then came 2020 — the year I stopped walking right.

I was 49.

Looking back, I now recognize that the first signs of Parkinson’s disease popped up years before that — increased anxiety, attention deficits, fatigue, muscle rigidity and shoulder stiffness. But it was the sudden onset of persistent cramping in my left foot that figuratively (and literally) threw me off my stride. The cramps progressed to a constant limp that dogged me even when no cramps were present. I began bicycling for exercise rather than my usual walking or running — because bicycling did not trigger the cramps.

I finally saw a neurologist. After months of uncertainty, I received my Parkinson’s diagnosis in February 2022. Directly upon diagnosis, my neurologist at Indiana University Health, part of the Parkinson’s Foundation Global Care Network, provided me with educational books published by the Parkinson's Foundation.

Upon learning more about my symptoms, I found out the foot cramps were Parkinson’s-induced dystonia. To my great relief, a regimen of carbidopa-levodopa dramatically reduced the dystonia and the limp. I began enjoying walking again — with a new appreciation for being able to do so. Across a spectrum of activities, my PD diagnosis brought me back to doing things that promote better mental and physical health.

Support of family and friends is paramount. My wife, Amy, has been a constant partner at every step. Together, motivated by a mutual desire to stay active, we have spent more time doing things we love like hiking, birdwatching and bowling. Likewise, I have valued the encouragement of my three daughters — along with my parents, in-laws, friends and co-workers. I’ve also appreciated interacting on Facebook and Twitter with others facing Parkinson’s disease.

Basketball has become my primary therapy. I play 4-on-4 half-court hoops two nights a week. When I’m on the basketball court, I don’t think about my symptoms.

After playing infrequently during my 40s, I now enjoy trying to improve my skills each week. My outside shot — such as it was, anyway — has largely survived. But when I drive to the basket, I miss layups time after time. So, my current goal — besides passing the ball better — is to actually score the bucket after getting past defenders on the way to the hoop.

Exercise is so enormously beneficial for Parkinson’s disease. Conversely, the worst thing for PD, in my experience, is spending long periods sitting at a desk or otherwise being sedentary. After years as a news journalist, I have now worked in state government since 2014. My job requires hours at a computer keyboard, but I do my best to get up and be active in the midst of workdays.

As I now deal with some dyskinesias and other symptoms, I realize that Parkinson’s is a tough opponent. But we can keep scoring points, nonetheless.

Learn more strategies for staying active with Parkinson’s. Download our Fitness Counts book.

I was diagnosed with Parkinson’s disease (PD) in 2014, at age 75. I am ashamed to say that upon receiving my diagnosis, I yelled at the doctor, “I’m not going to change my lifestyle!” He tilted back in his chair. “You don’t have to,” was his quiet reply. So, this independent, stubborn woman began her journey with PD. What to do?

I ran away! In 2005, I was living a unique retirement lifestyle, volunteering at organizations in the United States that offered free room and board. I had promised to go to the Menaul School in Albuquerque, New Mexico, for a semester. Getting diagnosed with Parkinson’s brought on an entirely new set of questions: Do I stay or go? Should I share my diagnosis with anyone? How am I going to tell my children? I could not say the word “Parkinson’s” without crying.

Now, 9 years into this degenerative disease, I fight back. I have grown past denial, anger and crying, and I have sprung into advocacy. I search for ways to promote awareness for Parkinson’s and to inform the world about the realities of the disease. I am eager to communicate with others living with PD, not to evoke pity, but simply to find understanding and community. By doing so, I have evolved into a Parkinson’s Ambassador.

April is Parkinson’s Awareness Month. I am always searching for new ways to raise awareness for Parkinson’s disease throughout the month. My local library in Ridgefield, Connecticut has been my biggest ally. They have updated their collection of Parkinson’s-related materials and they notify me of each new arrival. The Ridgefield Library is also offering an informational display table with Parkinson’s resources, which will be available all month.

Due to my limited mobility, most of my activism for Parkinson’s Awareness Month has been managed via technology. I reached out to the Ridgefield 1^st Selectman, who plans to issue a Proclamation acknowledging Parkinson’s Awareness Month in my town. I am also submitting letters to the editor to local newspapers to further raise PD awareness throughout the month. Awareness is so important for research. I am so pleased and proud of the results.

Psychologically and physically, managing my Parkinson’s is my full-time occupation. However, by participating in volunteer and social activities like being a Parkinson’s Ambassador, interacting with friends, and daily exercise, my attitude becomes energized. After all, motion is lotion.

Take 6 minutes to help create a world without Parkinson’s this Parkinson’s Awareness Month.

A while back, I started to notice a difference in my body. After a two-year search to identify and diagnose my symptoms, I finally got a confirmed diagnosis of Parkinson’s disease (PD) in September 2021. This diagnosis was not unexpected, as my older brother had passed away with Parkinson’s five years earlier. My brother had lived with PD for more than 30 years, and he introduced me to the Parkinson’s Foundation.

After I received my diagnosis, I immediately began to search for a gym where I could get out of the house and get some exercise. I was in touch with the Jewish Community Center in Tampa but had not yet joined any of their programs. By the end of September, I became a member of the Jewish Community Center’s Philip Shayman Parkinson’s Program and began the Rock Steady Boxing class immediately. I was not sure I could even participate in exercises due to my low energy, lack of strength and tremors.

The first person I met in the boxing class was Sam Scaff, a volunteer who was coaching the class about boxing techniques. Sam is a retired heavyweight boxer who had boxed professionally. He was instructing the class on boxing techniques designed to help with agility, strength and balance. Sam had been volunteering for this class for over three years and felt it was a calling for him, even though he does not have PD himself.

When I started the class, I was very tired and weak, but I instantly felt like this class was the right place for me. We met twice weekly, and Sam was always there to help us get the moves right. He was very reassuring, helpful and was always joking with me. We became good friends at the gym, but soon that friendship began to blossom. The JCC’s boxing class days became my favorite days of the week! With Parkinson’s disease you often lose social ties, but Rock Steady Boxing gave me the opportunity for not only exercise but also socialization with my peers. I have started a beautiful new relationship with Sam, and I also made many new friends in my classes who all share a common goal: BEAT PARKINSON’S!

In October 2022 I had my annual check-up, and my neurologist was amazed at my incredible progress. My gait, strength, balance and energy had all improved greatly. The Rock Steady Boxing program has allowed me to regain so much energy and strength that I am now able to socialize and maintain my relationship with Sam, as well as being able to play an active role in the lives of my three grandchildren. Exercise is truly the key to managing Parkinson’s. I encourage my peers to challenge themselves to exercise daily — you will feel much better.

Sam is still assisting the class with boxing techniques, and our relationship has grown into a wonderful and supportive pairing. Without the Philip Shayman’s Parkinson’s Program classes, I would have never met Sam or improved my physical and mental health. I tell everyone that exercise is the best thing you can do for Parkinson’s disease. Sam and I walk, box and continue to write our bucket list every day. I hope you will too!

Connect with your chapter to find your local exercise program.