## Breadcrumb - [Home](/) - [Living with Parkinson's](/living-with-parkinsons) - [My PD Story](/living-with-parkinsons/stories) ## Breadcrumb - [Home](/) - [Living with Parkinson's](/living-with-parkinsons) - [My PD Story](/living-with-parkinsons/stories) # My PD Story ![John with family at a Moving Day event](/sites/default/files/styles/470x550/public/images/john-poma-pd-story-hero.jpg?h=c9aea1bc&itok=JGtz-F8t) People with PD ## John Poma Everyone’s journey with Parkinson’s is unique, and mine began with [REM Sleep Behavior Disorder](/understanding-parkinsons/non-movement-symptoms/sleep-disorders "Sleep Disorders & Problems") or RBD. In 2018, I experienced episodes of acting out my dreams, which led to a diagnosis of RBD at Virginia Commonwealth University (VCU) Health in late 2019. I was later referred to a movement disorders specialist and enrolled in a RBD research study. Although I did not initially have Parkinson’s disease (PD), my symptoms gradually progressed over time. In 2022, I was diagnosed with Parkinson’s. ![John and his wife at an event](/sites/default/files/styles/380x361/public/images/john-poma-pd-story-float1.jpg?itok=xIBRI_9W) From the earliest days in 2020 of learning about RBD and its connection to Parkinson’s and other synucleinopathy, I made a commitment to become engaged in research and volunteer as a study participant. Learning about the science of Parkinson’s has changed how I see the disease. It gives patients like me a way to move from fear towards hope, purpose and contribution. > I don’t want to be defined by Parkinson’s and how its [symptoms](/understanding-parkinsons/movement-symptoms "Movement Symptoms") impact me. Instead, I want to be defined by what I have done to make a difference and advance understanding of Parkinson’s. So, instead of feeling defined by Parkinson’s, I began to see how I could contribute to progress. It is through my participation in a research program at Massachusetts General Hospital in Boston, MA that I also learned of the important work of the Parkinson’s Foundation. In addition to participating in research, I realized my contribution could also come through patient advocacy, mentorship and education. ![John speaking on stage at a Parkinson's Foundation conference](/sites/default/files/styles/380x361/public/images/john-poma-pd-story-float2.jpg?itok=IpT_MKLc) One of the true privileges of my adult life came in July 2023 when was I was invited to join the Parkinson’s Foundation [People with Parkinson’s Advisory Council](/about-us/leadership/parkinsons-advisory-council "People with Parkinson’s Advisory Council"). Living with Parkinson’s and its movement and non-movement symptoms is never easy, and no one day is ever the same. In recent months, living with Parkinson’s has been more difficult for me. However, I have learned that there is something incredibly special about the Parkinson’s community. We are there for each other. We understand what is sometimes difficult for others to understand. And we support each other along the way. ![Friends and family at a Moving Day event](/sites/default/files/styles/380x361/public/images/john-poma-pd-story-float3.jpg?itok=5iqx6UYB) As a member of the advisory council, I learned how our collective voices can change how people understand Parkinson’s; how patients and caregivers are supported; and how research and policy through research programs like [PD GENEration](/advancing-research/our-research/pdgeneration "PD GENEration: Powered by the Parkinson’s Foundation") (and now also [PD GENEration Insights](/blog/research/wpc-posters-2026 "Parkinson’s Foundation Shares 14 Scientific Posters at Seventh World Parkinson Congress")) can accelerate better outcomes. I also quickly learned that there is no better way to build community and support the work of the Parkinson’s Foundation than to participate in one of the Parkinson’s Foundation [Moving Day](https://movingdaywalk.org/) events held coast to coast. **Find your nearest Moving Day event now. Ready to do more? Find out how you can get involved!** [LEARN MORE](https://movingdaywalk.org/) When you are living with PD, it is not always easy to find the resources that are available to you in the community. Parkinson’s is also a disease that impacts more than just the individual. Instead, it also impacts both your spouse and your family. When I moved to Richmond in 2022, it was difficult to find the different programs available to people with Parkinson’s in a large urban area. Moving Day changes that and was the reason for my wanting to bring Moving Day to Virginia in 2024. It brings together the many resources available in our community for people with PD and their families. ![John hugging another Moving Day volunteer](/sites/default/files/styles/380x361/public/images/john-poma-pd-story-float4.jpg?itok=tDyKTjz3) We will hold our third [Moving Day Richmond](/events/2026/md-richmond-va "Moving Day Richmond, VA"), VA, on October 24 at the Richmond Raceway — and I can think of no event that is more meaningful, powerful or uplifting. Moving Day is a celebration of resilience, hope, and the strength of a community determined to change the future of Parkinson’s. Moving Day also embraces the power of [exercise](/living-with-parkinsons/treatment/exercise "Exercise"), which is proven to manage and improve Parkinson’s symptoms. From the earliest days of my diagnosis, I learned that exercise plays a central role in managing Parkinson’s. The focus of my week is participating as much as my work schedule will allow in a local program called LiftPD. LiftPD is structured around training, therapy and prevention strategies designed to slow progression and maintain function. LiftPD depends heavily on grants and community support, and again, it is my hope that my lived experience with Parkinson’s can help guide and strengthen LiftPD’s efforts to ensure that individuals at every [stage of the disease](/understanding-parkinsons/what-is-parkinsons/stages "Stages of Parkinson's") have access to functional exercise programs that enhance mobility, confidence and quality of life. ![John with family at a Moving Day event](/sites/default/files/styles/380x361/public/images/john-poma-pd-story-float5.jpg?itok=3itQfTEm) When I speak, I often say it is an oxymoron to stand here and say I feel lucky. However, I feel incredibly lucky. I am fortunate to have an exceptional care team at VCU Health, and I am grateful for the opportunities I have had to help advance our understanding of Parkinson’s and its future. One of the guiding principles of my longtime professional career in and around healthcare is that “Helping one person may not change the world, but it may change the world for that one person.” **Explore Parkinson’s Foundation** [volunteer opportunities](/how-to-help/volunteer "Volunteer") **today.** ## Related Materials Fact Sheets ### [ Understanding Sleep Problems in Parkinson’s ](/library/fact-sheets/sleep) [Read Now](/library/fact-sheets/sleep) Videos & Webinars ### [ Neuro Talk: Top Questions About PD GENEration ](/library/videos/pdgeneration) [Watch Now](/library/videos/pdgeneration) Fact Sheets ### [ Exercise and PD ](/library/fact-sheets/exercise) [Read Now](/library/fact-sheets/exercise) ## More Stories from the Parkinson's community ![Edwin Castillo headshot](/sites/default/files/styles/340x400/public/images/edwin-castillo-pd-story-hero.jpg?h=c9aea1bc&itok=i2krUKZL) People with PD ### [ Edwin Castillo ](/living-with-parkinsons/stories/edwin-castillo) READ NOW ![Tamara posing for a picture in a blue dress](/sites/default/files/styles/340x400/public/images/tamara-zanvardine-pd-story-hero.jpg?h=c9aea1bc&itok=T3TnAZYR) People with PD ### [ Tamara Zanvardine ](/living-with-parkinsons/stories/tamara-zanvardine) READ NOW ![Gary Krajewski headshot](/sites/default/files/styles/340x400/public/images/gary-krajewski-pd-story-hero.jpg?h=c9aea1bc&itok=jbMtYx20) People with PD ### [ Gary Krajewski ](/living-with-parkinsons/stories/gary-krajewski) READ NOW [VIEW ALL STORIES](/living-with-parkinsons/stories) ### Share your Story Do you have an experience with Parkinson's that you would like to share? [SUBMIT YOUR STORY](/living-with-parkinsons/my-pd-story/submit) ### Volunteer Join our team! We rely on the energy, skill, and passion of people like you to make life better for people with Parkinson’s disease (PD). [LEARN MORE](/how-to-help/volunteer) - Share on Facebook - Share on X - Share on LinkedIn