My PD Story

I have come to see that Parkinson's is a disease of hindsight. As I was putting the pieces together that would eventually lead to my diagnosis, I realized how sneaky the multitude of symptoms were that crept into my life.

I used to walk around the house holding my arm stiffly next to my side as though I was wearing a cast and wonder, why I am I doing that? I took my car into the shop to determine what was going on with the gas pedal, because it seemed to require more and more effort to push with my foot. I stopped writing my work notes by hand because I could barely read my handwriting anymore. I felt chronically fatigued, but just assumed every working mother felt the same way.

The list goes on... but what really caught my attention was when my son noticed that my right arm was barely swinging. My google search informed me that "reduced arm swing is a well-known clinical feature of Parkinson’s disease (PD)."

The first two specialists assured me that there was no cause for my symptoms and that PD was highly unlikely. My symptoms persisted and so did I. The third specialist nailed it and told me I was in the early stages of Parkinson's disease. I had just turned 54. I was slightly relieved to have a flipping name for what was happening to me but mostly I felt overwhelmed and devastated. My neurologist said it often takes six to 18 months to adjust to a PD diagnosis. It took me a year.

It's been two years now and this is what I know:

I was up and down, but mostly down. I knew I had to find a community of support to feel less alone so I did. I joined three different support groups.

I needed to get involved and do something within the PD community so I signed up for Moving Day, A Walk for Parkinson’s, and raised more than $6,000. Now I'm on the planning committee with my son. I needed my family and friends to just be there; I knew they couldn't fix any of this for me. I needed to honor my grief as ambiguous as it was and still is.

I needed to exercise like never before because it's the only thing that is proven to slow progression. And honestly, I needed to lighten up and try not to take myself so seriously. I discovered that Google searches can lead to really dark places if I'm not in the right state of mind when I begin the search — usually, I wasn’t.

I needed to keep being who I am, doing what I can, and embracing what is, even when I don't like it. I know that giving thanks promotes a little more abundance in life and fear gives thanks for nothing. No one wants to have Parkinson's, but I want to do what I can while I can and then say that I did.

I know that I will continue to have good and not so good days. This whole life journey is full of uncertainty with or without Parkinson's. I need to keep showing up and remind myself that I am brave.

Learn more about the unique experience of living with Parkinson’s as a woman.