Life with Parkinson’s


Some days when I wake up, I can’t see the time — on the clock on Gene’s bedside table or the one on my phone. My right leg is twitching , my toes are cramping and feel glued together, my back is stiff and achy, and my balance is … well, It’s shit. I must look drunk on the way to the bathroom.

But I take my meds, brush my teeth, and have a cup of coffee. I may be shaking on the right side, but within an hour, I’m doing pretty well. And if I stick to my schedule, the meds keep my tremor under control.

Such is my life with Parkinson’s. And yet, when I got an automated call yesterday from my health insurance provider, I answered “very good” to the question about my current state of health because, except for the Parkinson’s, it is very good. After all, when asked if I had this health issue or that one, I was able to answer “no” to every one of them. That’s because they didn’t ask me if I had Parkinson’s — or any movement disorder, for that matter.

The truth is, I can do pretty much whatever I want to, thanks to good medicine (doctors and chemicals) and lots of exercise. Like Alan Alda, my motto is “Keep moving.” And so I do. I work out with a trainer on Monday and Friday, go to a boxing class on Tuesday,  attend a Dance for Parkinson’s class on Wednesday, walk, hike, and garden.

This is my trainer Matt Jarvis, with me. Under normal circumstances, I work out with Matt twice a week, in a group.

On Thursday, I attend Tremble Clefs, a choir of people with Parkinson’s (and a few care givers), directed by a music therapist. You see, Parkinson’s tries to make everything controlled by your nervous system smaller — your movements, your handwriting, even your voice.

Having lived in San Francisco, Seattle, Faribault, MN, Phoenix, and Tucson, and having worked most of my life, I have lots of friends. And being in the Phoenix area with our five children (Gene’s two and my three) and 10 grandchildren, there is, under normal circumstances, lots of interaction with people of all ages.

This is my husband Gene and me with our nine grandchildren. The 10th, a baby boy,
was born 2 months later.

So I go about my days like anyone else, constantly aware of my disorder, but pretty much ignoring it. Even in this surreal time of COVID-19, life is good. And I am grateful.