Unbeaten by Multiple Sclerosis, An Olympic Skiing Hero Helps the Handicapped to Get Physical
A nerve disorder, MS affects about 250,000 people in the U.S. Doctors don't know what causes it or how to cure it. It is characterized by deterioration of the myelin sheath, the tissue that covers nerve fibers the way plastic insulates electrical wire. The damaged myelin becomes scarred, and the scars interrupt signals to and from the brain. The course of the disease is unpredictable. Over a period that can run from a few years to decades, many MS patients lose control of their muscles. About a third end up in wheelchairs, but MS is rarely fatal.
Like most people with MS, Heuga (pronounced Hew-ga) was advised to avoid physical exercise, and for several years stuck to the doctors' orders. Then he rebelled. After 22 years of athletic competition, he found he could not sit by idly and watch his body deteriorate. Heuga undertook a training regimen aimed at maintaining and improving the physical capabilities he still had. Inspired by his results, he also established the Jimmie Heuga Center for the Reanimation of the Physically Challenged. The center, located in Avon, Colo., where he lives, offers five four-day health-improvement seminars a year to people with MS and other disabilities. According to Dr. Robert Slater of the National Multiple Sclerosis Society, physicians increasingly support Heuga's approach. "There has been the feeling that because MS is associated with fatigue, exercise could produce problems," he says. "But now many doctors think exercise helps maintain endurance and the ability to cope with MS."
Heuga, 42, talked to correspondent Mary Chandler about his experiences.
Nineteen sixty-four was a special year. The men's team had a real closeness, an esprit de corps, because we had sacrificed together and given each other strength. I think of '64 and '67, when I took third in the World Cup, as my best years.
I first noticed something wrong with my vision in the spring of 1967. I had difficulty with depth perception, particularly with snow and flat light, but it didn't keep me off the slopes. In late summer I started getting numbness in my limbs and having some coordination problems. Also, I was emotionally flat and I could not explain it—that's not like me. I'd run sprints with guys on the team and not even try to win—and that really wasn't like me. Even though I won a third in the World Cup that year, I felt I'd lost the edge on my performance.
The symptoms would come and go, which is typical of MS, particularly in its early stages. I was seeing a variety of medical people—eye specialists and then a neurologist. Finally, in September of 1970, a doctor said straight out, "You have multiple sclerosis." I didn't even know what it meant, and I wasn't afraid. But I could see fear in my doctor's eyes, and that's what made me realize the diagnosis was serious.
My family has always looked at problems as challenges, and I think that helped me deal with MS. The typical route is, on the days when the physical problems are bad, you just don't feel like doing anything. You want to sleep in, lay around. Heat and humidity make you feel weak and lethargic. The doctors advise you to avoid exertion, emotionally and physically. So it gets really easy to do nothing.
In 1975 I moved from Lake Tahoe, Calif. to a one-room cottage in Connecticut, where I worked for a ski-equipment company. By now the effects of MS were more obvious; most noticeably, I was beginning to walk with a staggered gait. My pals at work called me "Shakes." Looking back, it was an important time for me. I didn't have a great deal of obligations or responsibilities—I'd gone through a divorce a few years before—and it wasn't important that I earn a lot of money or anything. I could focus on myself and what I wanted in the future. Having run for 16 years, I knew what it meant to be healthy and to feel good, and I knew I was losing that feeling. I made the decision, in the face of all these warnings about overexertion, that this wasn't the way I wanted to live my life.
I felt strongly that one of the reasons I'd lost some abilities was that I hadn't worked hard enough at trying to keep them. For example, about 1974 I lost my ability to run, and I blame only myself. There was a period when I was running despite the disease. Then I went off and I coached for the U.S. ski team, and all we did was ski. I came back that spring and I couldn't run; I'd lost the coordination for that activity. And I have not been able to run since.
I decided to do my best to prevent further loss of coordination. I had neurological problems, but I still had good muscle tone and was in good cardiovascular shape and wanted to keep it that way. So I decided to get aerobic exercise by riding a bicycle. It was difficult at first because I had terrible balance and I was weak. I fell a lot when I stopped. But eventually I learned to ride a bike again. Then I told myself, "Well, I'm going to ride a mile." Then I went for five miles each day and got my time down from 29 to 19 minutes. That felt great! For the first time in a long time, I felt good about myself—I wasn't just sitting around, marking time. Also, I had stopped skiing in 1975 because I had become so weak. After I started exercising more and getting stronger, I decided to try again in 1977. I was back on the beginner slopes for two years, but I've progressed now until I can sometimes even do advanced trails. Some days I use flexible leg supports so I don't get tired so quickly.
About 1979 I was invited to a bike race in Denver to raise money for MS. I remember riding by the finish area, and there were all these people sitting there with MS. Some had canes and some had wheelchairs. Some situations I saw there were frightening because I'd see parts of myself in those people, although theirs were more severe cases. I just thought, "Why are they sitting around?" They just had that blank fatalistic look on their faces. They just assumed that since they had the disease, their lives were forfeited.
That helped start me thinking about putting together a seminar based on my experience. Dr. Robert Slater, a vice-president of the national MS society, put me in touch with some doctors who helped me design a program. A number of people—including former President Jerry Ford, whom I met at a ski event in Vail, and Jean-Claude Killy, who is a very good, old friend—helped me raise money. When we had about $60,000, we put a staff together and ran our first seminar for 24 people with MS, in September 1984. So far we've run five seminars and have three more scheduled for this year.
The course costs $500, which is usually covered by insurance, but we've given scholarships to some people without insurance. Our goal is to help individuals with MS do the most they can with what they've got and to show them that they are often capable of more than they thought possible. When they arrive, our staff of visiting doctors and therapists measures their physical abilities. Then we sit down with the participants and establish goals. Our aim is to be realistic but challenging. For instance, if a person can walk but is weak and has not been exercising, we might advise swimming and graded workouts like stretching and pedaling a stationary bike. We've taken all comers. Last May we had seven people in wheelchairs in the program. One lady was functionally paralyzed in both legs and one arm, and we got her to go through a stress test using her good arm to pedal an upper-body ergometer. She did much better than she thought she could. Her husband was so proud of her, he had tears in his eyes.
The key thing is motivation; it's impossible for us to care more about the participants' health than they do. In that way I suppose I try to set an example to others, to show that there's a lot you can do to take charge of your own life. For me, taking charge meant working to do what I had always done: lead a very active life based on what I am able to do. Sitting in that cottage in Connecticut, I decided that the beast wasn't the disease—it was the loss of self-esteem.