My PD Story

A coworker was the first person to notice my tremor, but looking back, one of my earliest symptoms may have actually been anxiety.

It came out of nowhere. The day after graduating college, I moved to New York City to pursue musical theatre, had an agent, auditioned and performed professionally. Later, I built a successful career in sales leadership, eventually leading more than 100 people. I was outgoing, confident and completely comfortable in front of a room.

Then, in my early 30s, I suddenly became anxious just being around people. Everyday interactions felt strangely uncomfortable, and I couldn’t understand why. Around the same time, my hand started shaking and my handwriting became tiny and messy. A coworker once told me I had “serial killer handwriting” (LOL). I laughed — I had no idea it could actually mean something.

What followed was years of trying to find an answer. I saw three neurologists, orthopedic and primary care doctors, therapists, a psychiatrist and even tried acupuncture. During those same years, I went through two rounds of IVF and had two children. 

My symptoms were attributed to anxiety, pregnancy, postpartum changes and, at one point, even my shoes. I was diagnosed with Functional Neurological Disorder.

Two neurologists told me I was simply too young to have Parkinson’s.

I believed them.

Eventually, someone listened and ordered a DaTscan. When it came back abnormal, I was almost excited. I wasn’t happy to have Parkinson’s disease — I was relieved that after years of knowing something wasn’t right, I finally had an answer.

At 38, I was diagnosed with young-onset Parkinson’s.

The very next day, I started writing a children’s book, The Bunny Who Lost Her Hop, because one of my first thoughts was how I would explain this disease to my children. I wanted to turn something frightening in our family into something that might help another parent or child feel less alone.

Today I’m 41 with two young children, and they are both my greatest motivation and my greatest worry. Parkinson’s has taken away some of the predictability I once had, and I worry about what I’ll be able to do with my kids as they grow. But it has also made me determined to fight for as much life with them as possible.

I’m now preparing for deep brain stimulation surgery. I’m incredibly hopeful about what it could give back to me, but I’m also a mom preparing for brain surgery — and that’s scary. My hope is for fewer fluctuations and more freedom to simply live my life and keep up with my children.

I’ve also participated in PD GENEration, the Parkinson’s Foundation genetic study. Because I have an identical twin, I was especially interested in learning whether genetics might play a role in my Parkinson’s. I was relieved that my results did not show any known Parkinson’s-related genetic variants.

For a long time, I wanted to get back to the woman I was before Parkinson’s. I’m starting to realize that maybe the goal isn’t to become her again. It’s to take the confidence, humor and determination I’ve always had and figure out what I can do with the woman I’ve become.

I want to use my story to advocate for young people with Parkinson’s, especially women and mothers who don’t fit the stereotypical picture of this disease. A diagnosis can completely change the life you planned without taking away your ability to build an extraordinary one.

Learn more about young-onset Parkinson's disease and the unique considerations that can come with a diagnosis earlier in life.