My PD Story

Everyone’s journey with Parkinson’s is unique, and mine began with REM Sleep Behavior Disorder 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. 

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 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. 

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. 

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. 

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 (and now also PD GENEration Insights) 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 events held coast to coast.

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. 

We will hold our third Moving Day Richmond, 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, 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 have access to functional exercise programs that enhance mobility, confidence and quality of life.

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 today.