My PD Story

It was suggested that I might have Parkinson’s disease (PD) in August 2018 after spending a full year wondering what was wrong with me.

Before that moment, I had seen one primary care physician, three podiatrists, two neurologists and a neurosurgeon… not necessarily in that order. When the second neurologist finally said, “It could be Parkinson’s,” I cried.

But they weren’t tears of fear, they were tears of relief.

For the first time, I had confirmation that I wasn’t imagining things. The cramping in my feet (which had started five years earlier), the aching back, the balance issues, the slow gait — none of it was in my head.

That hadn’t always been the response. The first neurologist I saw laughed when I mentioned I was worried about ALS (Amyotrophic lateral sclerosis), and told me I was “fine,” diagnosing me with carpal tunnel. I smiled, nodded and left, but I wasn’t comforted. I knew something wasn’t right. So, I kept searching.

When Parkinson’s was suggested, the second neurologist explained that the only way to know for sure was to try Carbidopa/Levodopa and if it worked, that would be our answer. It sounded crazy. What was even crazier was waiting three months to get the prescription.

Looking back, I wish I hadn’t gone to that appointment alone. An advocate might have asked the questions I didn’t know to ask.

I kept searching for answers. Because I’m claustrophobic, I couldn’t do a traditional MRI, so I tracked down a “stand-up” MRI. I sat on a bench, helmet on my head, watching an episode of Law & Order: SVU while the scan was done. The results? Inconclusive.

Still, I told almost everyone I met that I had Parkinson’s. I needed to say it out loud to make it real.

Through a connection, I started physical therapy. Several times a week, I worked on the treadmill, balance exercises, and walking on uneven ground. My therapist, Jason, was kind and patient. One day, while struggling with a simple exercise, I broke down in tears. He quietly led me to a back room so I could cry in private. I never forgot that moment of compassion.

Eventually, I had to pause therapy for work travel — and then for foot surgery. A podiatrist diagnosed me with hammer toe and assured me surgery would fix the cramping and rolling in my foot. It didn’t. The surgery, where all but my big toe on my left foot were broken and repaired was one of the most painful experiences of my life. And I’ve had three children.

A week before that surgery, I finally received my prescription. Relief didn’t come all at once, but it came. Slowly, steadily, I began to feel better.

Every day is a balancing act — managing hydration, low blood pressure, anxiety, vivid dreams. I’m constantly learning, adjusting, and searching for ways to make life more manageable.

The Parkinson’s Foundation has been a lifeline for me. Offerings like the Mindfulness Monday Series provides coping skills and helped me discover a real sense of community.

Three years ago, I had an idea for a podcast: Sick As Your Secrets. I recorded one episode — 20 takes later, I realized how hard it is to speak into the void alone. About a month ago, I decided to try again.

This podcast is part personal journey, part shared space — where I tell my story and invite others to tell theirs. My goal is simple: to help, to guide, or even just to let someone know they’re not alone. So… here we go.

Explore the Parkinson’s Foundation podcast, Substantial Matters, as we interview PD experts on the issues that matter most to the PD community — from ongoing research to nutrition and mental health.