Jimmie Heuga: changing the face of MS; with a little help from his friends, "don't" became "can do". (Faces).

Being diagnosed with MS hits you like a truck coming from the left lane: unexpectedly, even if it comes after years of wondering why your body keeps misbehaving. While it's a relief to know why, the diagnosis carries heavy connotations. Wheelchair, we all think immediately. Disability! And what if you're an athlete? What if you pride yourself on pushing your body to extremes?

Until about 10 years ago, the medical consensus was that "exercise" and "multiple sclerosis" didn't belong in the same sentence, except as a warning: "Don't!" It took former Olympic skier Jimmie Heuga, and scores of dedicated researchers impressed with his example, to change that forever.

"Have you found a wheelchair yet?"

Barbara Sullivan Roehrig, a distance runner, was a junior in college when half her body went numb. After a few months, symptoms subsided; five years later, she was training for a triathlon when the other half went numb. "I thought it was the Sacramento heat, and it meant I had to run indoors, that's all." She finished the triathlon--only to learn that the numbness was due to MS.

Barbara grabbed for information about the illness. She started on the low-fat Swank diet. She found a support group. At least it seemed like support. She was happy when a woman from this group offered to come to her home, but devastated when the woman looked around and asked, "Have you bought a wheelchair yet?"

If this was what MS meant, Barbara thought, she'd avoid anything to do with it for as long as possible. "I was totally in denial for five years." Despite fatigue, she tried to train as she had before. When she couldn't, depression hit her hard.

Then Barbara moved to Colorado, where her physical therapist told her about the nearby Heuga Center and a five-day CAN DO Program for people with MS. Those five days, she says now, "turned me completely around."

Dave Leonard, a former correctional officer in upstate New York, says the same thing. His MS had forced him from his job and away from all the sports he loved when he heard about "this place in Colorado, The Heuga Center for MS. I went down when Heuga was giving a presentation, listened to him, found out I could get a scholarship, and said, `Sign me up!'"

Five days that change the world

Each program enrolls 25 people with MS, who each bring a friend or relative. Barbara Roehrig brought a good friend; Dave Leonard brought Kathy, his wife of over 20 years. Matching those 50 people are almost 50 medical personnel: neurologists, cardiologists, nutritionists, physical therapists, psychologists, and occupational therapists.

Barbara learned that she'd been over-training. She found out how to adapt her workout program for her body's abilities. True to its name, the program "focuses first on what you can do," she said. Free to confront MS in a proactive way, Barbara learned more about MS medications and about nutrition.

Dave Leonard had an intensive cardiovascular evaluation, as well as help with cognitive function. "They helped me clear my speech," he said. Best of all, he began to learn to ski. "How can you ski?" friends and former coworkers asked Dave. "You can barely walk." The answer was a "bisled", a device that enables a disabled person to ski sitting down, using upper body strength to direct the skis and sled.

At the end of the program, Dave and Barbara, like all the participants, received a detailed personal program, including a tailored workout schedule, recommended medications, nutrition advice, and recommendations for further psychological support.

Exercise was a no-no but Jimmie said yes

Jimmie Heuga was 20 years old in 1964 when he became one of the first American men to win an Olympic medal in alpine skiing. Three years later, before the 1968 Olympics, he experienced classic MS symptoms. In 1970, when he was definitely diagnosed, Jimmie received the standard medical advice of the time: curtail all exercise.

But staying sedentary further decreased his mobility. After five years he rebelled and devised a workout. He relied solely on what he'd learned and experienced as an athlete, and soon saw improvement in his abilities. A local filmmaker filmed him skiing, and when his neurologist found out, he was sternly warned: "We don't profess what you're doing, because we believe it could have a damaging effect on your condition."

But Jimmie kept it up and felt better and better. Finally, he began to recruit professional allies in the Vail, Colorado area. Among the first was family physician Dr. John Feeney, who was soon assembling a corps of MS specialists, including physical therapists and occupational therapists. After a few years, they were joined by national MS experts such as Dr. Randall Schapiro, director of the Fairview MS Center in Minneapolis, Minnesota.

The result was the nonprofit Heuga Center, founded in 1984. Its CAN DO Program offers a comprehensive approach to living with MS, including nutrition, self-management, and interpersonal support, in addition to exercise. None of it is ever promoted as a "cure" for MS.

In 1987, Dr. Richard Hicks was hired by the Heuga Center to be its director of Research and Education. Dr. Hicks, who currently serves on the board of the Heuga Foundation, had a background that included having studied the benefits of exercise with other illnesses, such as heart disease. "I believed in what the Center was doing, and knew that the only way to turn public opinion around was to verify the positive effects of exercise on people with MS. The only way to do that is to do clinical research, and get the results published. At the time, it was an uphill battle. Now, of course, it's common knowledge that exercise is important for people with MS."

"There's simply not a cure for everything," Heuga said in a 1997 interview with Hemisphere magazine. Instead, he stressed, what's important is to live one's life as fully as possible.

The five days of CAN DO are devoted to helping people stay as healthy as they can for as long as they can. "Our first focus is on aspects of deconditioning," said Brian Hutchinson, the Center's physical therapy director. "After diagnosis, people with MS are almost always less active. Yet we find that people who are able to get into a regular activity program show better function, more energy, less fatigue." The Heuga Center program is offered at $2,000 per participant/significant other--which covers only part of the actual program cost. There are scholarships for those who can't afford these fees. Most participants also say that the program has helped them cope with MS's frustrating uncertainty.

"This transition from a very skeptical, discouraged, and angry state of mind to being enthusiastically willing to get on with life, can be very moving," Jimmie Heuga said. "The enthusiasm and caring concern of the medical team are very moving too."

"City Hall has come around"

The rise in the popularity of programs like CAN DO has been paralleled by growing research interest in the effect of exercise on MS. Beginning in 1987, the Heuga Center began to provide funding to scientists interested in this topic. A breakthrough study, funded by the Center and the National MS Society, was published in 1996 in the Annals of Neurology. Dr. Jack Petajan's study of aerobic fitness training for people with MS showed measurable benefits in strength, functions, and mood. People in the study had mild to moderate MS and a range of disabilities. Subsequent studies, with no connection to The Heuga Center, have concurred.

Heuga smiles when asked about this 180-degree shift. "City Hall has really come around," he said.

Dr. Patricia Coyle, professor of Neurology and director of the Multiple Sclerosis Comprehensive Care Center at the State University of New York at Stony Brook, agreed. "There was a concern previously, because of fatigability and weakness, that to overexert yourself might be a bad thing," she said. "Now, the actual studies have shown it to be the opposite: that for every patient, no matter the level of disability, exercise is important. It can improve the strength of weak muscles, and it can have positive effects on a range of MS symptoms."

"Neurological Rehabilitation in MS" by Allan Thompson, published in the Annals of Neurology, October 2000, summarized over 20 studies on the subject. Nearly all showed significant benefit. Dr. Kenneth Johnson of the University of Maryland stated it plainly in Hospital Practice: "Ideally, drug therapy should be part of a multidisciplinary approach that includes such elements as patient education and physical therapy," he wrote.

CAN DO programs are now offered in Vail and at varying satellite locations throughout the United States; some are sponsored by chapters of the National MS Society.

As for the charismatic Jimmie Heuga, he has been given the National MS Society's prestigious "Making a Difference" Award for turning "Don't!" into "Can Do!" for countless thousands of people with MS.

For information about The Heuga Center or the CAN DO Program, call 800-367-3101 or visit <www.heuga.org>.

Freelance journalist Chris Lombardi wrote about her adventures traveling in Asia for the summer issue of InsideMS.