But he was also exhilarated. “For the 45 minutes I was out there, I had been fully in charge of myself,” he says. “I decided I was going to pursue exercise and ride my bike from then on. I went after it with a vengeance. I got up every morning at six and rode around the Sound. It was wonderful.”
“Little by little,” he adds, “I began to get noticeably healthier and stronger. And this affected my life — I began to do more things.”
Skiing was one of them. A filmmaker made a documentary about the former Olympian's return to the slopes, which in turn led to speaking engagements for MS groups around the country.
Medical experts, including his own neurologist, warned him that he might exacerbate his disease, but logic — and his body — told him something different. “They didn't know what causes MS,” he says, “so how could they tell me that exercise, which made me feel good and reinforced my health, could be bad for my disease? It seemed like a contradiction.”
Heuga vowed to teach others the lesson he had learned. In 1984, he established the Heuga Center in Vail, Colo., to help individuals with MS learn the value of exercise.
It took him four months to recruit 24 people with MS for the center's first exercise program. “The room and board, everything, was free,” he recalls. “I couldn't give it away.”
“We didn't know how to exercise with MS,” says neurologist Randall Schapiro, M.D., director of the Schapiro Center for Multiple Sclerosis at the Minneapolis Clinic of Neurology, who started working with the Heuga Center in 1985. “Nobody actually knew how to take someone with MS and show him or her how to exercise in such a way as to improve instead of fatigue.”
And that included Jimmie Heuga. The center's first program, Dr. Schapiro recalls, was at best clumsy, at worst dangerous — designed by athletic trainers who were accustomed to working with athletes. But humility and a willingness to learn were among Heuga's strengths, and he engaged others — including Dr. Schapiro — to help him develop safe and effective programs that teach participants how important it is to avoid overheating, how to monitor their pulse and breathing to avoid exercising to the point of exhaustion, how to adapt exercises to accommodate physical limitations, how to exercise safely even when experiencing symptoms.
Two decades later, the Heuga Center offers individuals with MS and their families a unique set of programs designed to complement traditional medical care and teach them to live well despite limitations.
The center's trademark “Can Do” program is a like crash course in how to live with MS. For five intense days, 25 patients (each with a companion) work with virtually every type of healthcare professional versed in MS therapies — among them neurologists, cardiologists, urologists, nutritionists, physical therapists, psychologists and occupational therapists. Participants leave the $2,000 “Can Do” program with an individually designed exercise, diet and wellness regimen.
Science has caught up with Jimmie Heuga. A landmark study, published in 1996 and funded partially by the Heuga Center, found that individuals with MS who exercised for 40 minutes three times a week fared better on a variety of physiological and psychological measures than those who did not exercise. “Patients with MS should be encouraged to engage in regular aerobic exercise,” the researchers wrote in the Annals of Neurology. “Exercise training appears to offset the typical difficulties of MS, including excessive fatigue, depressive mood disorder, and low self-rated quality of life.” Other studies have since confirmed those findings. Regular exercise has been shown to decrease MS symptoms of stiffness, weakness and pain. And Heuga is thankful that cold-air skiing as well as cool-water swimming afford particularly viable exercise regimens because they help keep body temperature down.
So even though his condition has continued to worsen, even though he has lived in an assisted-care facility since 1999, even though he now uses a wheelchair, Heuga — at age 62 — remains active. He speaks to participants in Heuga Center programs about 30 times a year. He swims. He pedals a three-wheeled cycle using his arms. He water-skis sitting down. And he skis down black-diamond (expert) slopes in a sit-ski — essentially a plastic chair on skis.
Seeing the toll MS has taken on his body, he says, others sometimes misunderstand his views. “I never said I was going to beat MS,” he points out. “To this day, they haven't found a cure, or the cause.”
He describes exercise as an “emotional anchor” that keeps him grounded in the world. As such, he says, it helps to maintain his sense of self, his sanity. And it keeps his heart, muscles and lungs healthy — despite MS. “I've always drawn a distinction,” he says, “between my condition and my health.”
He has learned to live quietly in the room that is multiple sclerosis. “If I had listened to [conventional medical advice], I would have been done at this point,” Heuga says. “I would be dead.”
©2006 American Academy of Neurology
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