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One Man's Walk for Dignity : Parkinson's Disease Sufferer Raises Funds

January 21, 1986|LYNN SIMROSS | Times Staff Writer

PALM SPRINGS — Until September, when he began his walk from Minnesota to California, Michel Monnot was an anonymous man with a mostly anonymous disease.

But, on Friday, when he arrives in Los Angeles, Monnot will have logged 1,300 miles walking through snow, rain and hailstorms and had his story told in newspapers and on TV in 67 cities and towns. And he will have raised about $400,000 for research efforts toward finding a cure for Parkinson's disease.

It is a feat he once only dreamed of.

Michel Monnot is what he calls a Parkinsonian or Parkie, a person with Parkinson's disease.

1.5 Million U.S. Victims

He is one of 1.5 million people in the United States who have the disease, yet, as he will tell you, the average person knows little about the disease.

"More people have Parkinson's than those with MS (multiple sclerosis), muscular dystrophy and Lou Gehrig's disease combined, but people don't know about it," Monnot said during an interview here after arriving from San Diego late last week.

"It affects people mostly between 55 and 65, so it has been typecast as an old people's disease. But younger people get it, too."

Parkinson's disease is a disorder of the brain, but scientists do not know what causes it. It develops because of damage to the extrapyramidal nervous system, the part controlling movement, posture, balance and walking. Persons affected with the disease experience primary symptoms of stiffness, tremor, slowness, difficulty with movement and balance.

"Theoretically, it's supposed to strike men and women equally," Monnot said. "But on this trip, more men than women (with Parkinson's) have showed up at the meetings."

A scrappy little Frenchman who had to retire from his job as a college French professor last year at age 44 because of the disease, Monnot was diagnosed as having Parkinson's eight years ago. He believes that he actually had it three years before, when doctors said he didn't.

"It came gradually and is progressing gradually," Monnot explained. "The first time was the winter of 1975 and I noticed my left arm wasn't swinging quite like it used to."

Monnot said that he always had been athletic, playing soccer, running, jogging, biking and following a regimen of exercises.

"I thought, well, it's the cold of Minnesota or I've got a pinched nerve," he said. "It went away when the spring came."

The following winter, his left arm and hand worsened--the muscles seemed tight and he couldn't tap his fingers. But the symptoms disappeared again, came back and went away twice more.

Sensations 'Vanished'

Monnot finally went to a doctor in the spring of 1978, when, while writing college reports, the feeling in his left hand "disappeared, like it just wasn't there. Vanished."

Monnot was in France teaching a program there for Carleton College in Northfield, Minn., where he served on the faculty. He first visited two French physicians who ruled out Parkinson's and/or any sign of a brain tumor.

But his symptoms persisted, coming and going. So, on his way home to Northfield, a college town of about 13,000 40 miles south of Minneapolis, he stopped to see a retired University of Minnesota professor of physiology who then was living in Rhode Island.

After examining Monnot, the doctor said that the professor did have a problem with his cervical vertebrae, but that he also had Parkinson's.

Monnot consulted a Minneapolis neurologist who, after a battery of tests, concluded, too, that he had Parkinson's.

"There is no real test for Parkinson's," said Monnot. "It's a process of elimination. They can tell you what you don't have. Eliminate everything else."

Since then, although he takes three drugs to help regulate his disease, Monnot's health has deteriorated to the point where he retired in January, 1985, from his professorship.

"I wasn't producing the job I like to produce, so I decided to quit," Monnot said. "One day I asked a kid a question in class and he asked me to repeat it, and I couldn't. I couldn't remember what I'd asked.

"Parkinson's sneaks up on you. Sometimes it's in your hands, or your legs or your neck. Sometimes I stammer like crazy. And I can't read as well--my eyes jump around. And then sometimes it's everything together. Having Parkinson's is like having rigor mortis set in, only you don't die."

Instead of resigning himself to the deterioration of his body, Monnot decided he had to do something while he still could.

Monnot said his walk was influenced by the success of the late Terry Fox, the Canadian athlete who raised $24 million for cancer research in 1980. Fox attempted to walk across his country, but had to quit after five months because doctors discovered new cancerous growths in his lungs. He died in 1981.

'Road to Dignity'

Monnot began organizing his benefit trip in August, 1984, and decided to call it, "The road to dignity walk."

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