My Story, The Beginning

“You have Parkinson’s.” says my doctor.

His words are quiet and earthshaking. They call for emotions usually reserved for plane crashes and terrorist bombings.

My brain is silently screaming “no, no, noooooo.”

The future I feared for so long is here.

I feel sorry that this nice doctor has to give me such bad news. My brain is thumping now, my hands shake.

I leave. I go to the parking lot and call my husband. I feel badly that he did not come with me as he often does. He was as eager to find the reason for my frequent falls as I was.  It is not that easy living with someone who topples over about once a week. I was falling often, with no warning, seemingly without cause, and in any location– while hiking, crossing intersections, or walking to our seats at the symphony.

I had visited a lot of health professionals — primary care, neurologists, rheumatologists – not one had an explanation for these insults. There was no reason to think that this meeting with my neurologist would be different. So, I told Craig he could skip it.

It was a lonely decision. I sat in my car for a long time. Just me and the fact of the disease, and dread. Deep, tremulous, screeching dread.

Over the next couple of days, I did what virtually every new person with Parkinson’s (PWP) does. I cried a lot. I tried to imagine a way out: my favorite was that my doctor had mixed up my file with someone else’s. Someone older, someone much older. I went to bed and stayed there for a couple of days.

You see, I knew the truth. I knew all too well what Parkinson’s looks like. What it smells like. How physically painful it can be. How emotionally painful it can be. I know how it can steal confidence and serenity. I have witnessed its cruelty, its power to cripple, to dull the brain, to silence, to depress.

Parkinson’s holds sway over my life.

My mother died with it.

My sister died with it.

My brother has it.  

Parkinson’s has me firmly in its grip.

My mother and her three children years before any of us were diagnosed with Parkinson’s

Parkinson’s Foundation 2023.Parkinson's statistics

Thumbnail Picture: Fractal # 1. iPad art by Betsy Vierek.