BY SUE MacDONALD
The Cincinnati Enquirer
When 37-year-old Michael J. Fox went public with his Parkinson's disease last week in a People magazine interview, Larry Keene could identify with the actor's story.
Larry Keene, 47, of Independence was diagnosed with Parkinson's when he was 42.
(Yoni Pozner photo)
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Mr. Keene, of Independence, also faced a surprise diagnosis of Parkinson's, a chronic muscle disease, at a relatively young age.
For years, he tried to hide his symptoms from colleagues. Now, he's relying on positive thinking, laughter and the support of his wife and two children to come to terms with what will be a lifelong challenge.
Both Mr. Keene and Mr. Fox are proof that the neurological muscle disorder, marked by the destruction of a muscle-controlling brain chemical called dopamine, is not limited to the elderly.
Mr. Fox was 30 when his symptoms started. Mr. Keene was 42 when his left toes began cramping five years ago.
"Up until about 10 years ago, it was thought that Parkinson's was limited to people over 60 years of age," says Paul Maestrung, scientific and medical affairs director of the American Parkinson Disease Association (APDA) in New York. "But as neurologists become aware of the disease, they're noticing it more in younger people."
One problem facing Parkinson's patients is a general lack of knowledge about it, even among doctors. Consequently, patients are sometimes misdiagnosed or told they they're too young to have Parkinson's.
Debbie Mills, coordinator of the Tri-State Parkinson's Center, which covers Ohio, Kentucky and Indiana, says people as young as 19 have been treated for the twitches, tremors and muscular problems associated with Parkinson's.
Mr. Fox first noticed problems seven years ago when his left pinkie twitched uncontrollably during the filming of Doc Hollywood. "Mine started in my left toes," says Mr. Keene, now 47, a former insurance claims adjuster.
Early symptoms of Parkinson's disease are mild. In time, shaking and tremors become more pronounced. Symptoms include: |
Loss of spontaneous movement.
A tendency to sit still for long times without moving.
Loss of facial expression.
A slow, monotone voice when face and voice muscles become affected.
Inability to relax an arm or a leg, sometimes with short, jerky movements.
"When I was driving my car, I would get a charley horse or cramp in my left toe, and then it would spread to another toe and another toe. That's when I went to a doctor and he told me I had Parkinson's.
"Like millions of other people in the world, I said, 'OK. What's Parkinson's?' "
Up to 1.5 million Americans have Parkinson's, although Mr. Maestrung says the number is probably higher because doctors are not required to report the disease to health agencies. It's more common in men than women (60 percent to 40 percent).
Most Parkinson's patients are over 50, but 10 percent to 20 percent of the 55,000-60,000 new cases a year are thought to involve people under 50.
Most patients can manage symptoms with medicines that control dopamine, a brain chemical that regulates tremors, rigidity and muscular problems. But doctors sometimes resort to surgery, either to remove the part of the brain that causes rigidity or tremors, or to implant a pacemaker-like device that stimulates the brain to control tremors.
Despite the treatments, there is no cure for Parkinson's. People with Parkinson's typically die from complications -- pneumonia or suffocation, for example -- not from the disease itself.
"The problem with Parkinson's is that it fluctuates," says Ms. Mills, who coordinates Parkinson's support groups in the Tristate. "You can be as normal as can be one minute, and the next minute -- and I mean within a minute -- you can be off, dealing with tremors and muscle rigidity."
Treatment must be carefully monitored by a physician or neurologist familiar with Parkinson's. Usually, drugs are a first resort, and surgery is recommended when drugs lose their effectiveness.
Tri-State Parkinson's Center, 558-6770 or (800) 840-2732, offers information and referrals to support groups and services, including a support group specifically for young adults diagnosed with the disorder. |
Southwest Ohio Region of Ohio Parkinson's Foundation, (800) 877-4577 or (937) 878-8608.
American Parkinson Disease Association Inc., (800) 223-2732, based in New York, information and referrals.
"It's a very difficult disease to treat," Ms. Mills says, "because every person who has Parkinson's is different. The sad part is that people are misdiagnosed a lot of times before they find a doctor who believes a young person can have Parkinson's."
Mr. Keene continued working as an insurance claims manager until October 1997, when he went on long-term disability.
"It was too much to handle," he says. "I was having to get up in front of people making speeches and giving presentations and my leg was shaking and my hand was shaking."
Mr. Keene says controlling stress helps keep his symptoms from worsening. He says he is fortunate that only the left side of his body has been affected, mostly by tremors.
Attending support group meetings was helpful for Mr. Keene.
"The first support group meeting I went to was an older people's meeting, and I was devastated," he says. "A lot of them were in the later stages of Parkinson's, and I was depressed.
"Shortly after that, I went to a meeting for 'young Parkinson's,' and that was much better. There were people I could relate to because they were in the same situation. They were in the work environment or trying to work. They were relatively young. They had children who weren't yet grown or were college-age and they still had a lot of life ahead of them."
Today, Mr. Keene creates stained-glass works as a hobby
and remains involved in family matters. He and his wife, Bonnie, 47, a nurse, have two children, a college freshman and a high school senior.
"I try not to worry," Mr. Keene says. "Like Michael J. Fox said, a sense of humor is very, very important. Early on when I had tremors, I'd say to my friends, 'Just call me Thumper.'
"I try to keep a positive attitude. You can't let it take over your life, because there's so much more to life than Parkinson's."