By Ed Lash
Jimmy Heuga, the skier and Olympic bronze medalist, was diagnosed with multiple sclerosis (MS) in 1970. In following his neurologist’s advice to live a less active life, often given for MS in those days, he began feeling generally unhealthy.
“The advice”, as he said in the fine book Maximizing Your Health, “became an excuse for me to have others assume my responsibilities on my behalf. Several years passed with this attitude, and as I did less, I discovered that my coordination began to wane, my muscles began to atrophy and subsequently, I became less able to perform those functions that allowed me to be active and lead a normal life.”
What did Heuga do? He decided that no matter where MS was taking him, he would go in as good physical shape as he could. He began to ride a bike even though he had difficulty even getting on the bike because of poor balance due to MS. His exercise, he found, caused him to experience an exhilarating feeling, which left him physically tired rather than mentally drowsy. He then expanded his activity program by degrees.
I believe this to be the key to any exercise program for people with MS: increase a little at a time to avoid exhaustion. Jimmy Heuga not only recuperated well, but he was also a key contributor to the publication of Maximizing Your Health, a program of graded exercise and meditation published by the Massachusetts MS Chapter, an excellent book. Since Heuga’s recovery, most MS neurologists now recommend regular exercise for people with MS.
Many of us have had debilitating exacerbations, or attacks, of MS. But one of the most severe experiences with MS, followed by an almost miraculous recovery, appeared in the October 1984 issue of McCall’s magazine. Eight years after onset and five years after her diagnosis of MS, Kathleen White’s condition had worsened to a point that she was confined to bed most of the time. A routine physician’s report of her condition with MS and other complications was sent to her so that she could apply for disability payments. She noticed that the last line of the report was covered over with correction fluid. She held it up to the light and read, “This patient is in the terminal stages of her illness.”
Those words proved to be the catalyst that changed her life. With the advice of a nutritionist, she changed her diet, and though her doctor had not recommended physical therapy, common sense told Kathleen that she would never regain the use of her limbs unless she began exercising.
At this point White couldn’t even sit up in bed without help. She arranged for members of her church to visit her twice a day to put her arms and legs through a series of simple exercises, after which she was so tired that she could scarcely raise her head from her pillow. Each day she forced herself to do just a few seconds more than the day before.
Two months into her therapy she was able to sit up for 30 minutes and go through a series of awkward exercises by herself. With agonizing slowness, she relearned simple tasks: brushing her teeth, combing her hair, dressing herself and maneuvering her wheelchair.
In four months, White accomplished the almost unbelievable- standing and taking her first steps. Two years later, she was walking at least a mile each day with the use of a cane. A year after that she was hospitalized for emergency surgery to clear an intestinal obstruction. This two-month experience of surgery and immobility during recovery resulted in her physical condition going back to the point that walking unaided was again a challenge. She resumed her former therapy immediately and eventually was walking eight brisk miles a day and training for her entry in a twenty-four mile marathon, which she did finally complete.
Asked if she feels everyone with severe MS symptoms could improve the way she did, Kathleen White says that no one knows, but she believes that at least some can.
Note: Self-help is not intended to replace medical treatment. It should be used together with the help of appropriate professionals in a team effort.
Ed Lash is a United Spinal member who lives in Trumbull, Connecticut. He can be contacted by e-mail at edlash.ms.selfhelp@juno.com, or by phone at 203-445-0118.
