Monday, April 20, 2009

Cases - A City of Strangers and Kindness - NYTimes.com

I can spot Marty in a crowd a block away. He tilts left into the wind, as if he were shouldering the full blast of Hurricane Katrina, his arm gesticulating awkwardly. Once a well-dressed woman asked if I had seen "that man — I think he's drunk." I assured her the man was my husband. "He has Parkinson's," I told her.

We get that a lot — snickers, whispers. Looks that wound. "When people stare," Marty tells me, "I get nervous and shake that much more."

There are no rules of etiquette for dealing with a person who has a neurological disorder. Some people do stare; others recoil. Fortunately, though, many are genuine and forthcoming in their help. And that is as true here in New York City, supposedly the capital of heartless impatience, as it is anywhere in the country.

Marty has to take a combination of seven drugs eight times a day. He bought an expensive pillbox specifically made for Parkinson's patients; an alarm goes off when it's time to take a pill. One problem: the container is so difficult to open that when he finally succeeds, the pill is likely to go flying across the room or, worse, into the street.

Even when he's able to grasp the pill and take it, it may not last as long as he would like. "After a few years of taking medication, people with Parkinson's may begin to experience 'wearing off' spells," Dr. Lawrence I. Golbe, a neurologist at Robert Wood Johnson University Hospital in New Brunswick, N.J., recently wrote in the Parkinson's Disease Foundation newsletter, adding that for some patients the drugs may be effective for only three hours.

At home it's a minor inconvenience, though worrisome. Outside it's a potential disaster. Sometimes Marty's upper body moves but his feet stick, and he falls. Once a sergeant called from Penn Station. He said Mr. Sternberg was resting, just shaken up a little. "We'll send him home as soon as he's able," he said. Bless those men and women in blue.

One afternoon a young woman saw Marty leaning unsteadily against a street pole. She insisted on helping him. He insisted she didn't. She finally grabbed his arm, hailed a taxi and delivered him to our doorman, two blocks away. "Merry Christmas," she said with a smile.

A week later his pills gave out in front of Grand Central Terminal.

"Want to put a shine on those shoes?" an old-timer beckoned. It was sleeting; Marty was shaking. (Cold weather aggravates his tremor.) Did he need anything to drink or eat?

"Just some water for my pills. Thanks."

Why was he out on such a day? Marty showed him two simple gold wedding bands he had just bought for our 20th anniversary.

"It's a surprise for my wife," he said. "I could never wear a ring; my fingers were too thick. Now it seems I can."

Experts do say that Parkinson's patients burn more calories than other people. "If there's any consolation to this disease," Marty said, "it's that I can indulge in Ben & Jerry's Chocolate Fudge Brownie without guilt."

I have a sign taped on the inside of our front door listing vital items: pills, wallet, phone. Sometimes he forgets to look. The other day a saleswoman at Radio Shack tried to help a flustered Marty find his wallet.

"I know it was here," he said. "Maybe I dropped it on the street looking for my pills."

Before she could calm him down, he left under a black sky ready to burst with rain. Was it in the trash? No luck. We searched the apartment; it was on the closet floor. Perhaps we should have a sign reminding us to look at the sign.

The following morning he returned to Radio Shack. The saleswoman asked if he had found his wallet. He sheepishly admitted it had never left the apartment.

"Oh, yes," she said. "I prayed to St. Anthony for you, the patron saint of lost articles. He must have heard me."

I know I can be guilty of treating Marty like a child; impatience gets the better of me. "Hold on to the railing, pick your feet up so you don't trip, don't run for the bus. Be careful." These admonitions are taken with a grain of salt; after all, he is 13 years my senior.

"Don't make mountains out of molehills," he constantly reassures me.

Still, I hold my breath whenever he ventures out. But perhaps a little less these days — my fears of the city tempered by the grace and good will of its people.

http://www.nytimes.com/2009/04/14/health/14case.html?partner=rss&emc=rss