My PD Story

INTENT. Perseverance. You’re not alone.

I was diagnosed with Parkinson’s disease (PD) in May 2020, right in the middle of the COVID-19 pandemic. Like a lot of people, I don’t remember much of what the doctor actually said. I do remember walking out of there thinking, “OK, now what?”

Because I was adopted, I don’t have any family medical history to rely on. My mind went straight to my two sons and four grandchildren — what does this mean for them? I remember thinking I need to understand this, for them as much as for me.

Those first months were a bit of a blur. A lot of appointments, a lot of questions, and a lot of just trying to make sense of it.

Some mornings just took a little more to get going. Nothing dramatic — I’d sit for a minute before starting. Just taking a moment before the day began. Some days it was fatigue or just feeling a step behind — the kind of things people don’t really see.

That’s where one word started to matter: Perseverance. I had it written on a card on my file cabinet and I saw it every day. It wasn’t anything fancy, but it reminded me to keep moving forward, even when I didn’t have it all figured out.

A few years later, through the Parkinson Voice Project, I was introduced to another word: INTENT — living and speaking with purpose.

Those two words just clicked for me.

So, in 2024, I made a simple wristband — partly for myself, and partly to thank the people who had helped me along the way. I ordered just 10. INTENT on one side, Perseverance on the other.

That was it. No plan, no idea it would go anywhere. I put it on every morning. I started sharing them—and then people began to ask about them.

Then something happened that changed everything.

I was on a Parkinson’s Zoom call with a group from Boston, telling the story of the Resolve Band, when someone held one up. They had gotten it the day before through Parkinson Voice Project — one of the ones I had sent to Dallas to thank them for their project.

That’s when it hit me — this thing had taken on a life of its own. And the message was pretty simple: You’re not alone.

Since then, hundreds of bands have been made available to people with Parkinson’s disease, care partners and clinicians at no charge. It’s also led me into some advocacy work, which has been another way to stay connected and give something back.

For me, though, it still comes back to something simple. Focus on what you can control. Stay engaged. Keep moving forward. I’ve been lucky. I’ve got a great family who’s been with me every step of the way.

I’ve also had the chance to participate in research studies and clinical trials, including PD GENEration: Powered by the Parkinson's Foundation.

Participating in PD GENEration helped me understand what my diagnosis really meant — not just for me, but for my family. When I got the results back, I sat down and wrote an email to my two sons, my wife and other family members to walk them through it. That’s how important it felt to me. The process itself was straightforward, but more than anything, it felt like I was doing something that mattered — for them and for others down the road.

What I didn’t expect was how much that experience would carry forward. A few months later, I was in Washington, DC, at the Parkinson’s Policy Forum, meeting and advocating with my senators and congressman.

I shared this story — how PD GENEration gave my family clarity and relief — and how programs like it only exist because of the broader research infrastructure supported by non-profits like the Parkinson’s Foundation and the NIH.

For me, it wasn’t just participating in a study. It became something I could speak to —real experience, real impact — and use to advocate for continued investment in Parkinson’s research so more families can have that same clarity.

Participating in research and advocacy work has given me another way to stay engaged and give something back. What gives me hope is the community and the fact that things are moving in the right direction.

I just returned two days ago from Phoenix, where I attended the World Parkinson Congress, where I gave out many English and Spanish wristbands and presented a poster abstract related to the Resolve Band and advocacy work.

If I had one thing to say to someone newly diagnosed, it would be this: Take a breath. You don’t have to solve this all at once. Just take the next step. That’s what I do.

Every day starts the same way—

With INTENT.

And with Perseverance.

Some days it’s just for me. Other days, it starts a conversation.

By joining PD GENEration study, participants can discover new knowledge about their genetics, understand their family’s risks and help benefit generations to come. Learn more and enroll today.