One Man’s Walk for Dignity : Parkinson’s Disease Sufferer Raises Funds
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.”
He’s been walking an average of 15 miles a day, he said, and riding a few miles too, explaining that “I won’t make the 2,000 miles (walking) I had planned on. I had hoped to raise a little more money, too, but every bit will help if we are to find a cure.
“Along the way, the people with Parkinson’s have come out, and that’s great. We’ve been able to start about 14 support groups and three new chapters for the APDA (the American Parkinson’s Disease Assn., which has sponsored Monnot’s trip).”
Monnot said that he was pleased to meet so many Parkinson’s patients on his journey, because he has found that people suffering from it tend to shut themselves away and make few public appearances.
“It’s an embarrassing disease,” said Monnot. “We don’t want to shake and drool in front of people. You can’t help it, of course. But you can hide away.
“I wouldn’t be here if it weren’t for the drugs that enable me to do this,” he added. “Twenty-five years ago, there weren’t any drugs. And I decided if I didn’t do it now, there would be a time when I couldn’t do it. I wanted to do something for myself, and for Parkinson’s.”
Like other Parkinson’s victims, Michel Monnot knows that his condition will continue to worsen even though the powerful drugs he takes--12 pills a day, three of Sinemet, three of Symmetrel and six of Parlodel--now manage to keep him mobile.
He continues at home to walk daily, play soccer and do stretching exercises specifically prescribed for Parkinson’s patients. He has special wooden weights with handles that he swings and lifts above his head to keep his arm muscles from atrophying.
On the trip, Monnot has used his weights several times each day, and kicked around his soccer ball in hotel parking lots.
Importance of Exercise
During lunch at the Sheraton Plaza in Palm Springs, where he stayed before continuing on to Anaheim, Monnot talked about the importance of exercise for victims of Parkinson’s.
“The doctors agree that exercise is the best thing for people with Parkinson’s, that they really benefit from exercising,” he said. “If I didn’t exercise, I would just stiffen up and stay that way.”
One of the people Monnot looks forward to meeting when he arrives in Los Angeles is fitness and exercise expert Richard Simmons, who has included in his upcoming book, “Reach for Fitness,” a chapter on exercises for Parkinson’s patients.
Profits from the sale of the book, being released this spring by Warner Books, will go to the Reach Foundation, a nonprofit organization that Simmons founded to provide exercise programs for disabled people.
Simmons plans to be on hand at a private reception for Monnot on Saturday at the Los Angeles Athletic Club, where Monnot will receive a special proclamation from Mayor Tom Bradley.
After going to Santa Barbara to visit a Parkinson’s support group and see old friends at UC Santa Barbara, where he taught from 1965 to 1971 and earned his Ph.D. in French linguistics, Monnot will return to Los Angeles for a reception at the Beverly Hills YMCA Feb. 2.
Olympian Rafer Johnson will be on hand at this public ceremony, from 2 to 5 p.m., to walk the last few blocks of the journey with Monnot.
Many Famous Afflicted
“Until I got this, I had no idea how many famous people had Parkinson’s and you never knew about it,” Monnot said, ticking off several names, among them Harry Truman, Mao Tse-tung, Adolf Hitler, Francisco Franco, actors Terry Thomas and Michael Redgrave. “It’s a disease most people just don’t talk about.”
Since Sept. 15, though, Monnot has done little but walk and talk about Parkinson’s. He’s had some help, from family friend and former teaching assistant Madeleine Rodenas, who has followed him on the trip in a motor home, donated by Northfield Hospital in Minnesota, and his son Patrick, 21.
The American Parkinson’s Disease Assn. in New York paid expenses for the walk and provided brochures containing a toll-free number that people may call with contributions. It is (800) 223-2732.
Patrick Monnot took a semester off from his studies of Chinese at the University of Wisconsin to assist his father, organizing his schedule each day and serving as advance man. Patrick’s girlfriend, Sara Cox, also came along to help with the trip until Thanksgiving, when she went back to the university.
His wife, Janice, wanted to come, Monnot said, but she couldn’t take that much time off from her job as a French teacher at Northfield High School.
But, during Thanksgiving vacation she visited her husband, and at Christmastime, she and daughters, Natalie, 22, and Gigi, 19, joined the group in Santa Fe.
Problems During the Trip
Monnot said that he plans to write a book about his journey, and talked cheerfully about some of the tribulations of his trip, the terrible weather--it was raining so hard in Kansas City that ceremonies had to be canceled--the number of dogs that chased him, the roundabout routes he took to avoid walking on freeways.
“I am glad to see him so confident now,” said Patrick Monnot. “It’s hard for me to see him at the dinner table, sometimes not being able to cut up his meat, or getting dressed and trying to tie his shoelaces. But I’m really proud of him.
“Over the years, he made a concentrated effort to hide it,” Patrick Monnot continued. “He didn’t get into an actual depression, but I do recall now that I look back that he lost his confidence. He lost his drive and fell into a state of apathy. Now that he’s had this walk to do, he has a purpose again and I think that helps him deal with the disease much better.”
Smiling at his son, Monnot said, “I’ve told all the people I have seen along the way that I believe in three cardinal virtues: faith, hope and charity. I say to the Parkies, keep your faith and hope up so we can get a cure. And to the non-Parkinsonians, I say, keep your charity up so we will have the money to find a cure.
“This trip has been a great satisfaction for me,” added Monnot. “But the real pleasure has been shaking the hand of a little 70-year-old man who says to me, ‘I’m waiting for the cure. Thank you for helping.’ ”
