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Lucky Me

A sufferer of Parkinson's disease gives an honest assessment.

8:19 AM, May 7, 2011 • By VICTORINO MATUS
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When actor-activist Michael J. Fox released his memoir Lucky Man, Phyllis Richman thought the title a bit much. Sure, the most popular celebrity suffering from Parkinson's disease has done a lot to spread awareness, but to call himself lucky? "With apologies to Michael J. Fox," writes Richman in the Washington Post, "I must say Parkinson's disease is not the best thing that ever happened to me."

A few years ago, through publicist Heather Freeman, I was introduced to Richman, the Post's legendary former food critic. And every so often the two of us will go out for lunch somewhere interesting, whether it be for sushi or at a taqueria or somewhere fancy. She shows up with her cane, walking slowly, but is never late. And for the longest time I didn't know she suffered from Parkinson's. She's never really brought it up—we'd much rather discuss why a certain restaurant grills a steak that is mediocre at best or how I could use the leftover duck carcasses from the Peking Gourmet Inn to make a savory broth. (When I commented to her that for decades she had one of the best jobs in journalism, Richman replied, "You have no idea how much bad food I've had to stomach.")

Although Richman still manages to get around, it has become increasingly difficult because of her affliction. In the Post, she vents in frustration at failing to show up to a neighborhood party because she couldn't find the house and after a block or two, she was physically drained. "With Parkinson’s," Richman explains, "stress seems to instantly drain my brain of half of its dopamine. It makes my back ache, my legs weaken and my foot curl." She walks home defeated.

I realized long ago that with my future limited, it would be pathetic to waste the present by caving in to anger and misery. On the other hand, I gnash my teeth when I come across people with Parkinson’s (PWPs, as we call ourselves) who declare that it is the best thing that ever happened to them. That’s like saying I was fortunate to have missed my party because I’d gotten to meet half a dozen neighbors and still had the chocolate mousses.

Her account is painfully honest (and honestly painful):

Remarkably few PWPs strike back at the world with constant complaining, though Parkinson’s creates an easy excuse to do so. It affects every part of the body—external and internal—with stiffness, slowness and refusal to cooperate. It tends to freeze the face into a stern mask and tighten the throat so that the voice becomes a hard-to-hear monotone. Clenched muscles, uncontrollable bobbing, drooling and disrupted gait are commonplace.

The victims of this unattractive disease are more motivated to be ingratiating than to whine. Alone before our mirrors we practice pleasant expressions and warmer voices.

Articles, blogs and books by PWPs too often aim at the wry and cozy. They conclude that Parkinson’s brought them closer to their loved ones and opened them to a deeper satisfaction. I recognize in these authors a desperation to find value in their “challenged” lives. They know as well as I do that they’re only going to get worse.

And yet she and others like her manage to soldier on.

Richman almost didn't make it to our most recent lunch date (at Central Michel Richard). But it wasn't because she'd been bested by the disease. Instead, as she was crossing the street, a taxi backed into her, knocking her to the ground. The driver, she told me, was stunned and apologetic and drove her to the restaurant free of charge. We actually laughed about it and had a sumptuous feast. But we always have a good lunch and I'm looking forward to our next.

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