Wednesday, August 25, 1999
By Shantell M. Kirkendoll
JOURNAL HEALTH WRITER
In the pool at Hurley Health & Fitness Center, Art Shoen of Rose Township gains a power he has not felt in years, not since he was diagnosed with multiple sclerosis six years ago.
Shoen cannot walk, but in the pool he is a free bird, said volunteers at Splash & Relax, a physical therapy program coordinated by Dawn Hiller, a Hurley exercise physiologist.
"This is very uplifting for me," Shoen said Tuesday, his 45th birthday. "It's the only time I'm not sitting on my butt in the wheelchair or lying down."
MS continued to gain prominence this week with the announcement by talk show host Montel Williams, 43, that he has the disease. MS affects 300,000 people in the United States, including entertainers Richard Pryor, Annette Funicello and Lola Falana.
The disease strikes in the prime of life, randomly attacking the central nervous system and wearing away the control that people have over their bodies.
A breakdown in the insulation around nerve fibers causes problems with vision, walking, talking and memory. In MS, the damaged myelin distorts messages that normally would flow smoothly along nerve pathways, making body functions uncontrollable. Numbness, paralysis and blindness can result.
Michigan is in what doctors call the "MS belt." Michigan, with its colder climate, has one of the nation's highest rates of the disease - about 120 to 150 people per 100,000, said Dr. Omar Kahn, medical director of the MS clinic at Wayne State University.
To meet this population's needs, educational and advocacy groups are providing more support than ever.
An informational seminar on MS research is planned next month at Baker College, and the University of Michigan-Flint is studying the effects of relaxation techniques on muscle flexibility.
In October, Hurley Health & Fitness begins Gateway to Wellness, a six-week program designed by the occupational therapy department at Washington University in St. Louis, Mo. During those weeks, people with MS will learn what to expect from the illness, how to manage symptoms and what resources are available, said Gaylyn Close, Hurley fitness and testing specialist.
Splash & Relax offers aid to people with MS and arthritis. Shoen, whose first symptoms of MS were a tingling and pain in his arms, let the water support him as he stroked and glided in the pool, experiencing a freedom that he never has on land.
"The disease is different in every person," said Karen Bables, services manager of the state's eastern region of the National Multiple Sclerosis Society in Burton.
People might immediately become immobile, or have flare-ups that affect them for weeks or months, and then disappear, sometimes for years. Drugs help manage the symptoms, but there is no cure.
"The purpose of drug treatment is to decrease the severity of attacks and lengthen the time between episodes," Bables said.
In fact the drugs Avonex, Betaseron and Copaxone work so well that last year, the National MS Society recommended that doctors begin patients on one or a combination of the drugs as soon as a diagnosis is confirmed.
Research shows that the drugs prevent nerve damage in the brain that occurs even when the person feels normal.
Sue Hart, 39, a Flushing mother of three who carpools and chaperones her family of three children, knows that there is no cure for her MS. But she said that does not mean that there is nothing she can do to make her life easier.
Diagnosed in 1993, Hart manages her disease with help from a less-conventional method that she says strengthens her muscles and lessens stress: yoga.
Yoga instructor Linda Graham guides those standing or in chairs to strike warrior poses - lounging with arms outstretched and shoulders relaxed - during her class at Hurley Health & Fitness.
The class is open to anyone and on Tuesdays is adapted for MS patients.
Participants said they notice the difference if the class is canceled because their muscles grow more tense. University of Michigan-Flint researchers are watching their progress, determining if yoga can indeed improve their lives.
Margot Brummett, diagnosed with MS in 1968 at age 31, said it does.
"When I wasn't here regularly, I felt stiff, really tense," she said.
Brummett and Hart have a less severe form of MS, called relapsing-remitting, in which people have weeks of fatigue and stiffness and then an absence of symptoms.
The other form, called progressive, affects 20 percent of people with MS, said Kahn.
Kahn is scheduled to speak at the seminar Sept. 11 at Baker College. The ABCs of MS will highlight the progress made over the past 30 years in treatment and what research is in the works.
Research is in three main areas: predicting who will get MS; treating the progressive forms of the disease; and regenerating damaged nerves.
Wayne State is one of the few clinics in the nation specifically researching how MS progresses in African Americans, who in Detroit are diagnosed at a much higher rate than other groups, Kahn said.
Williams said Monday that he had been misdiagnosed for years. He said that even with his diagnosis, he plans to live as normal a life as possible.
Diane Hohn of Flint Township said she is an example of the full lives that those with MS can lead.
At 24, she was temporarily blinded in one eye. Doctors restored her sight with steroids, unaware that it was the first sign of MS. Months later, Hohn, an elementary school teacher, became so stiff that she could not lift her arm to write on the chalkboard.
Hohn's mother wrote out lessons on large sheets of paper that Hohn tacked on the board. That was 23 years ago.
In October 1976, doctors put the pieces together and have worked with Hohn to maintain her independence and agility.
Now in her mid-40s and retired from education, Hohn dedicates herself to starting programs for others with MS, like the Hurley exercise programs. Her only obvious trouble is problems with swallowing.
"What you don't understand you fear," she said. "I know I have some
control over this disease."
Shantell M. Kirkendoll can be reached at (810) 766-6366.