Having Parkinson’s disease is nothing to celebrate

May 3, 2011

With apologies to Michael J. Fox, I must say Parkinson’s disease is not the best thing that ever happened to me.

Picture this: One Sunday evening I walked up the street for a “meet the neighbors” party, eager to make connections in my new neighborhood.

My husband decided to stay home. No problem, the party was nearby. I didn’t even take my purse: 11 years into Parkinson’s, I’ve pared down what I carry. I was burdened enough with my walking stick, a house key and a covered tray of chocolate mousses I’d made for the potluck.

I’d verified on MapQuest that the address was no more than a couple of blocks away, the outer limit of my walking ability nowadays. I was looking for house number 425.

It didn’t exist. The house numbers jumped from 423 to 500.

I grew anxious. With Parkinson’s, stress seems to instantly drain my brain of half of its dopamine. It makes my back ache, my legs weaken and my foot curl. I tried to relax as I rested my tray on the hood of a parked car. Surely some other partygoers would come by and direct me.

This is who came by: A woman with a couple of children and an apple pie, on her way to a dinner. Two passersby who wished they knew where a party was. An energetic woman with a dog. Two men carrying fishing gear, who thought I might be looking for 525.

A young man shooting baskets said he figured 525 was just a block or two away and he’d be glad to walk me there. Unwilling to inconvenience him, I made my way alone.

But the house at 525 was dark and silent. I stood there, exhausted and near tears, until I noticed the young basketball shooter: He had followed me to be sure I was all right. So I borrowed his BlackBerry and called my husband to rescue me.

In minutes I was home, defeated. I curled up on the sofa for a good cry, but decided to take stock of my life instead.

What is an appropriate attitude towards one’s own debilitating chronic disease? 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.

Michael J. Fox deserves enormous admiration and gratitude for spinning his affliction into gold for Parkinson’s research. But titling his memoir “Lucky Man” goes too far. I would have added, “as told to Pollyanna.”

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.

I admit that Parkinson’s does offer some compensations of the “we’re all in one boat” variety. I’ve made some good friends among the therapeutic dance, choral and exercise classes and support groups I attend. My limitations heighten my appreciation of everyday comforts and small kindnesses. It’s not even unreasonable to say that Parkinson’s is educational. It provides knotty problems to solve and opportunities to test your grace under pressure. It comes with surprise attacks, sudden reversals, small victories. Sometimes I think of it as a real-life video game.

As for Fox, Parkinson’s has revealed him to be selfless, inspiring — a hero. But lucky? That’s a stretch.

Richman is a former food critic for The Post.

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