I was 37 years old when the tremors began.
At first, I dismissed them. Stress. Exhaustion. Life with a one-year-old baby. But the shaking didn’t stop. I began searching for answers, moving from specialist to specialist. Ironically, I was diagnosed with everything but Parkinson’s. In 1994, physicians didn’t look at a young mother and consider Parkinson’s disease.
It wasn’t until I finally saw a Movement Disorder Specialist in 2013 that I heard the words that would change my life forever: Young Onset Parkinson’s Disease.
Later that same year, I underwent Deep Brain Stimulation surgery—a radical thought for someone just diagnosed, but the medications weren’t working, and, after all, I had been misdiagnosed for 19 years. I was frightened. And if I’m being honest, I hosted a six-month pity party.
Parkinson’s was not on my bingo card, but eventually, I realized I had a choice. I could allow this disease to define my future, or I could define it myself. I chose to fight.
Instead of dwelling on what Parkinson’s had taken from me, I focused on what I could still do. I began taking risks. Trying new things. Saying yes when it would have been easier to retreat. I learned to move forward one step at a time, not looking too far ahead and refusing to live in the rearview mirror.
Somewhere in that process, something unexpected happened.
Parkinson’s helped me find my voice.
I am a self-described empath. I care deeply about people, and I didn’t want anyone else to feel as lost or alone as I once did. So, I began speaking out. I became an advocate. I found purpose in helping others navigate their Parkinson’s journey.
I have the privilege of working alongside organizations such as the Davis Phinney Foundation, The Michael J. Fox Foundation for Parkinson’s Research, PMD Alliance, PD Avengers and Drive Toward a Cure. I was honored to be selected as one of 16 Ambassadors for the World Parkinson’s Congress in May of 2026. I’ve served as treasurer of my local support group, participated in policy forums, and volunteered for multiple clinical trials. I even published a children’s book—The Secret Switch—which I wrote with my granddaughter for any family to use to explain Parkinson’s to a child in terms they can understand.
This disease may live in my body, but it does not own my spirit.
Parkinson’s also gave me something I never expected: community. I discovered I was not alone. I became part of a global Parkinson’s “family” — resilient, courageous individuals from every corner of the world. These are people I never would have met if not for this diagnosis. That is the silver lining.
But I have also lost too many friends to Parkinson’s. That reality is heartbreaking. Devastating. It takes a toll, especially on someone who feels deeply. I fight for those who are too ill to fight for themselves. For those who have not yet found their voice. For those who are no longer here to speak up.
Parkinson’s is the fastest-growing neurological disease in the world. Its prevalence is rising rapidly, affecting not only older adults but people like me diagnosed with Young Onset Parkinson’s Disease. We urgently need better treatments. We need greater access to care. We need increased research funding. Ultimately, we need a cure.
Progress does not happen in silence. It happens when patients, families, researchers, policymakers, and communities raise their voices together. If I don’t speak up, who will?
Advocacy is not optional. It is necessary. It requires resilience, persistence, and a refusal to be pushed aside. It requires a “never give up” attitude in the face of a disease that does not rest.
Parkinson’s may have altered the course of my life, but it did not take my purpose. It strengthened it. It pushed me to rise up, to connect, to advocate, and to fight not just for myself but for millions living with this disease and for those who will be diagnosed tomorrow.
In the immortal words of Tom Petty, “I won’t back down.” I know what’s right. And that starts with demanding more oversight for the National Parkinson’s Project, which was approved by Congress with strong bipartisan support, but failed to deliver on its first report due in January. I think my vibrant, caring community deserves better than a forgotten promise.
So, I ask you: learn about Parkinson’s. Support research. Stand beside those who live with it. Join your voice with mine and the countless others who refuse to be defined by a diagnosis. Let’s stand our ground and find a better path, together.
