What It Feels Like to Live With Parkinson’s

By | June 24, 2021

It was a year ago, to the day. I noticed how far down the floor had gotten. At the same time, I had lost elbow room — particularly when trying to maneuver a forkful of peas into my mouth. As for folding my underwear, it was frustrating: like trying to catch a fish in a pail.

I had been told that reality is a construction of the mind, and I believed it, but I had never had a chance to test this theory. What I was about to discover is that chemicals in the brain — in my case, absence of dopamine — are acting as interior designers, shaping space this way and that way, shortening some distances, flattening perspectives, raising steps, adding or subtracting a couple of inches here and there to the height of chairs, steps and thresholds. Trying to describe my discomfort to my primary doctor, I told him I felt that “space is closing up on me like a coffin.” He asked me if I was depressed and suggested I speak to a shrink.

Granted, my metaphor was overdramatic. Had my primary doctor been a graphic designer, I would have told him that I felt trapped in a Merzbau — in one of the mazelike installations of Dada artist Kurt Schwitters. No chance he would have understood my reference. To explain the rigid sensation in my legs and arms, I briefly considered mentioning Marcel Duchamp’s famous Nude Descending a Staircase. It would have been gibberish to him.

He sent me to consult specialists: a rheumatologist, an endocrinologist, a cardiologist, a nutritionist, a couple of physical therapists. I was X-rayed, scanned and MRIed. No one could figure out what was wrong with me.

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We were in lockdown mode. To stay fit, all my girlfriends were taking yoga lessons on Zoom. Joining them was out of the question: the yoga mat on the floor was so far down, I would have had to rappel down a rope from a helicopter to get to it.

Instead, I decided to do some badly needed re-landscaping around the yard. I live in the country in the South of France. I could justify using the furlough to do a little gardening. Being outdoors appealed to me: there, I wouldn’t bump into furniture, fall from a stepladder, or trip on the edge of a rug. For the next three months, I moved enough soil to build a dam across the Yangtze River. I strutted around, pushing heavy wheelbarrows up and down ridges.

In hindsight I realize that, with my hoe, shovel and spade, I was trying to gain control over the spatial dimension that was slowly shrinking my world and, yes, turning me into a prisoner inside my own body. By the time I was done with my earth-moving project, I could hardly walk. The diagnosis: sciatica. The treatment: Advil.

Last week in Paris, it took a neurologist exactly three minutes to diagnose Parkinson’s. She was a pro — like Paula Scher, who took 34 years to learn to draw a logo in a few seconds. The question is: Why did it take so long for me to book an appointment with the right specialist? Was I mentally impaired as well as physically handicapped? What do you think?

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