My PD Story

Turning a Diagnosis into a New Purpose

I was diagnosed with Parkinson’s disease (PD) in 2019 after my wife noticed a tremor in my left hand. Like many people, I left that initial doctor appointment with more questions than answers. For a period of time, I focused on following medical advice, maintaining my routine and not projecting too far into the future. I believed I was managing Parkinson’s, but in reality, I was largely reacting to it.

Over time, it became clear that a passive approach wasn’t neutral — it had consequences. I noticed gradual changes and realized that waiting for Parkinson’s to dictate next steps limited my options. That marked a shift in how I approached the disease. I decided to take a more active role, both in managing my own health and in contributing to broader efforts aimed at improving outcomes for people with Parkinson’s.

One of my first focus areas was exercise. As I began educating myself, the Parkinson’s Foundation resources on movement were critical. Their recommendation to incorporate four types of exercise — aerobic activity, strength training, balance and agility work, and flexibility — gave me a clear, practical framework. It became the foundation of my exercise plan. I used it to structure my weekly training, build variety into my workouts and ensure I was addressing multiple aspects of movement.

From that base, I began setting goals and layering in events as a way to stay consistent and accountable.

Over the past few years, that approach led me to complete seven triathlons, eleven Spartan obstacle course races and three races up the Empire State Building stairs. These events weren’t about competition. They provided structure, measurable milestones and a reason to remain engaged over the long term. Training for events helped translate an abstract recommendation (exercise is important) into a concrete, sustainable practice.

With each event, I gained confidence — not only in my physical capacity, but in my ability to influence my own trajectory. That confidence began to shape how I approached other aspects of living with Parkinson’s.

I took a broader focus on wellness. Again, Parkinson’s Foundation information played an important role, particularly around nutrition, sleep, stress management and overall lifestyle balance. None of these elements are cures, but together they help tilt the playing field in my favor. I became more intentional about what I eat, how I recover, how I manage stress and how consistently I support my body and brain. The goal wasn’t perfection; it was building habits that support resilience over time.

Advocacy followed. I became involved in efforts supporting the National Plan to End Parkinson’s Act, meeting with the staff of seven U.S. Senators. Three ultimately committed to supporting the legislation. That experience demonstrated how individual stories, shared clearly and persistently, can influence policy. It also reinforced my belief that advocacy isn’t limited to professionals — it’s accessible to anyone willing to engage.

Learn more about Parkinson’s-related Policy and Advocacy

At the same time, I became increasingly involved in Parkinson’s research. What began as curiosity developed into active participation. I enrolled in studies, learned directly from researchers and gained insight into how essential patient involvement is to scientific progress. Research provided clarity and purpose, and it led me to become both a Parkinson’s Foundation Ambassador and a Research Advocate — roles that enable me to help ensure patient perspectives are reflected in the work shaping future treatments.

Looking back, I realized I hadn’t just been responding to Parkinson’s. I had been building a framework for how to live well with it.

Once that became clear, I felt a responsibility to share what I had learned. It all led me to write a book, Living Parkinson’s, and to create livingparkinsons.com as a place to organize information, resources and lessons learned along the way. My goal was to document practical strategies — grounded in lived experience and supported by science — that together form the core of an actionable plan anyone can adapt. Rather than offering prescriptions or guarantees, the focus is on helping people take ownership of their disease and actively fight back in ways that fit their own circumstances.

This journey I’m on has been about agency. Parkinson’s changes life, but it doesn’t eliminate the ability to influence outcomes. Whether it’s exercise, wellness, education, advocacy or research participation, each step builds momentum.

Parkinson’s has altered my story, but it hasn’t determined its direction. My journey isn’t defined by a diagnosis — it’s defined by how I’ve chosen to respond. If sharing that perspective can help someone else take a more active role in their own journey, then the effort has been well worth it.