My PD Story

I was diagnosed with early-onset Parkinson’s Disease (EOPD) at age 41. For years leading up to it, I had lived with a worsening shaking in my fingers and wrists, an unnatural slowness to get anywhere, and a cement-like feeling forcing me to drag my feet. Navigating the first diagnosis wasn't easy; I had to push through differing opinions from three neurologists before finally getting a clear answer. EOPD is difficult to pinpoint in its early stages.

Now 48, living with Parkinson’s for seven years has taught me never to take everyday joys for granted. While I have had to step back from full-time work, that shift has allowed me to embrace more quality time with the ones I love. Right now, I’m coaching my seventh-grade son’s basketball team, which is a deeply fulfilling experience that I simply didn't have the space for before. 

There will be good days and bad days that fluctuate like the “on” and “off” state of PD medications, but don't lose hope. Try not to keep the pain you're feeling just to yourself. Disclose your situation early and often to your loved ones, and you'll be surprised at the support you'll get. 

And I know it is challenging, but don't give in to the fatigue from the medications, always keep your body moving!

My first experience participating in Parkinson’s research was through PD GENEration: Powered by the Parkinson’s Foundation, a genetic study. I found the study on Parkinson.org and participated in 2023 through Indiana University School of Medicine. The process was easy, and I was relieved that my results did not show any known Parkinson’s-related genetic variants. I shared the results with my family, including my children.

I am currently participating in a Phase I clinical trial in the U.S. for a new Induced Pluripotent Stem Cell (iPSC) therapy known as "Amchepry," which recently received conditional approval in Japan. 

The surgical approach is similar to Deep Brain Stimulation (DBS), but instead of permanently implanting hardware and electrodes, surgeons inject live dopamine-producing cells into the substantia nigra of the brain. Only time will tell if this treatment is effective. I’ve been documenting my journey on Substack.

It is encouraging to see more regenerative and targeted treatments emerging for Parkinson's. If you or a loved one is living with PD, I strongly encourage you to explore and consider participating in current research studies and clinical trials. The only way we accelerate better treatments is by showing up and actively participating in the research.

Explore how you can get involved in Parkinson’s research today. Visit our Join A Study page and learn more about our Research Advocate program.