I, too, share your enthusiasm for exercise for us ataxians. In fact, it might be true that everyone could benefit from exercise. I, obviously, don’t know everybody, so I can’t say that for sure. But exercise is a good – maybe a cheap – way to make the most out of what abilities you have left.
A warning, tho’: the medical textbooks teach that ataxia has no known cure, yet. Exercise is not a cure for ataxia. It’s “merely” a helper.
More than 20 years ago Robin Viland started having a series of strange, unexplained symptoms — she was unstable when walking and her speech was becoming slurred. The symptoms were not going away when she finally decided she needed to determine a cause. After two years of testing, at age 29, Viland was diagnosed with ataxia, a degenerative disease of the nervous system resulting in difficulty with everyday tasks such as walking, speech and writing.
“You ignore symptoms at first,” said Viland, now 49. “And then finally, you say you have to find out what this is.”
Searching for treatment
According to the National Ataxia Foundation, an estimated 150,000 Americans have ataxia, and the disease can strike anyone at any time regardless of age, gender or race.
There are two types of ataxia — hereditary or sporadic. The first is caused by a defect in a gene that is present from the start of a person’s life. Sporadic ataxias usually begin in adulthood and have no known family history of the disease. This is the type of ataxia that Viland was diagnosed with, because they have not discovered a gene associated with her disease: she has no family history and has not been able to determine a cause.
While scientists are looking for treatments and a cure for ataxia, there is neither. Viland says even if a cure were found today, it would probably be too late for her. Her cerebellum has shriveled and would not be able to be brought back. She is, however, hoping for a treatment that will stop or slow down the progression of the disease. Many people who are diagnosed eventually deteriorate to the point they need a wheelchair. Viland’s progression has been slower than many, although she does use a walker.
Completing everyday tasks can prove difficult. She has had to make adjustments to her home to make life easier, like having the bathroom renovated to be more handicapped accessible and wider doors to accommodate wheelchairs.
“Everything is a challenge — vacuuming, doing dishes, just walking, taking a shower,” said Viland, who previously worked as a hospital greeter, but had to quit because it was becoming harder and harder to talk with people she encountered.
Viland lived in Seneca when she was diagnosed and was attending support meetings at Good Samaritan Hospital in Downers Grove. There she met Naperville resident Allen Habal, now 45, who also was diagnosed with ataxia about 20 years ago. They formed a friendship that grew into something more. She eventually moved to Naperville to live with Habal.
Viland and Habal visit the same neurologist at University of Chicago Medical Center once a year. There he performs a series of tests to determine the progression of their disease. To continue walking as long as possible, they exercise daily using a stepper, treadmill and Wii.
“We do it to keep our legs moving,” Viland said. “We try to stay active with the hopes to slow the progression down.”
But Viland and Habal both know that, while the disease is not fatal and has no effect on their brain function, they will someday most likely have to use wheelchairs.
“If you saw me sitting you wouldn’t think anything was wrong, but as soon as I get up, you’re going to see it,” Viland said. “We appear like we are drunks.”
For encouragement, Viland and Habal frequent online support groups, connecting them with people throughout the world diagnosed with the disease. They also continue to attend support group meetings at Good Samaritan Hospital where they have met more than 30 other people diagnosed with ataxia. In addition, they go to a yearly conference for both people diagnosed with ataxia and their caregivers.
“This disease gets very little recognition because it is just starting to show its ugly head,” Viland said.