STRANGE DISORDER LEAVES WOMEN SEARCHING FOR ANSWERS, DESPERATE FOR SUPPORT Published on Sunday, February 28, 1999
© 1999 Madison Newspapers, Inc.

Byline: Chris Martell Wisconsin State Journal

Two years ago, Carolyn Pflasterer was a Wisconsin State Journal photographer and a runner. Then she began to notice things: little stumbles, faint tremors, waves of dizziness. Nothing that couldn't be explained away. But after six months, her balance was so off that even walking became difficult. There was no more denying -- at least in her mind -- that something was wrong. Convincing doctors, however, was not so easy. Pflasterer, 53, was urged to see a psychiatrist. Jeanne Swack, 42 a tenured music professor at UW-Madison, began losing her balance on stairs about four years ago. Her vision seemed jumpy, but for a while she blamed it on computers. ``Then, one day in 1995, I woke up and the room was spinning,'' she said. Hand tremors began to steal her ability to play the flute. It was probably stress, according to the first doctors she saw. For Susan DeVos, 45, of Madison, the first sign of trouble came in 1982. She was a graduate student in demography and her handwriting started to deteriorate. And when she went folk dancing, the simplest moves eluded her. Then, even walking became difficult. She found herself leaning forward to balance herself. ``I was told it was stress over writing my dissertation,'' she said. Diane Slane, of Monona, was assured that it was all in her head when her legs began to falter until she needed a wheelchair. Then she began to fall out of her wheelchair. ``They told me, `You'll sit up when you're ready to,' '' she recalled. Mystifying symptoms sent all four women on a frustrating, sometimes infuriating, and always lonely odyssey through the medical establishment. Baffled doctors raised all kinds of possibilities: ear infections, bad blood flow to the brain, compressed vertebrae, Parkinson's disease, multiple sclerosis, stroke. And somewhere along the line, all were told that their problems were probably psychosomatic. The search for answers, when doctors had none, led Pflasterer to the Internet to find others with similar problems. To her great relief, several lived nearby. To bring them together, Pflasterer founded the Ataxia Support Group, which has met regularly at Meriter Hospital since last summer. So far, there are 16 members from the Madison and Milwaukee areas, Palmyra, Iowa, and Illinois. For them, the obscure word ``ataxia'' is all the diagnosis they may ever have for their debilitating phantom of a disorder. ``Ataxia'' is derived from the Greek word ``ataxis,'' meaning ``without order'' or ``incoordination.'' It means that, for some reason, the brain and body have fallen out of synch. The stories of these women are different, and so are their symptoms. But they share the same basic frustrations. Despite the renown of Madison's medical community, the women said, doctors here had little experience with these kinds of problems. Several people in the support group had to travel to clinics in other states, most notably the Mayo Clinic in Minnesota, for answers -- or what would have to suffice as answers. ``I'm left with the doctors' best guess,'' said Pflasterer, who has conflicting opinions from several neurologists. ``That's what I'm stuck with. It's like grabbing at straws.'' Like several members of the support group, Pflasterer was told an imaging test showed her cerebellum (the part of the brain that controls walking, eye movements, speech and swallowing) was deteriorating. Others with ataxia, though, have cerebellums that look normal on such tests. ``I know all the medical conditions I don't have,'' DeVos said. ``I don't have (multiple sclerosis) or muscular dystrophy and all sorts of other things. But that's all I know. ``For people with heart disease, for all kinds of physical problems, there are answers. For people like us, there is nothing.'' While some forms of ataxia are hereditary, most will never know why their bodies began to fail them. More women than men are afflicted, and it can hit at any stage of life. The National Ataxia Foundation puts the number of diagnosed cases at about 150,000. But that estimate doesn't reflect the many people who stop looking for a diagnosis after the first doctor suggests the symptoms might be psychosomatic. ``It takes a lot of chutzpah to ignore all these people saying things like that,'' DeVos said. ``A lot of people don't have the self-confidence to push on after doctors have told them it's all in their head.'' ``You begin to doubt yourself when so many people tell you that it's all in your head,'' Pflasterer added. ``But I couldn't believe I could do this to myself. It's easy to fall through the cracks if you're not persistent.'' Some ataxia victims gradually lose vision because they can't coordinate their eyes. Others develop slurred speech, or tremors that make it hard to use their hands. Some lose the ability to walk entirely. Intellect, meanwhile, almost always remains intact. Just as the cause of ataxia is elusive, it's impossible to predict its course. There is no cure and no treatment beyond experiments with medications to control various symptoms. Members of the group, at a recent meeting, gave updates of what they've tried, and if it worked: medication, acupuncture, hormones, vitamins, herbal remedies, fluid treatments, therapies of all descriptions. And they share candid accounts of experiences with various doctors. Until about five years ago, when a number of studies of inherited ataxia began, there was scant research into the disorder. ``I've learned a little bit here and a little bit there. But I wish somebody could put the whole picture together for me,'' DeVos said. ``It's confusing to patients, and to their doctors.'' While the sharing of practical information is the focus of conversations at their meetings, it's equally important, Pflasterer said, to be with people who understand her when she says things like, ``When somebody walks by me in a supermarket, things start shaking. I can't tell if I'm moving, or if other things are. ``I can't read and eat at the same time,'' Pflasterer said. ``You always hear jokes about not being able to walk and chew gum at the same time. Well, for me, it's true. Most people don't have to think about turning a page. I do. I have to concentrate on everything I do.'' At a recent meeting, she described a night at the Madison Civic Center, when she was thrown off balance by the incline of the floor, the carpeting, the dim lights and the movement of the crowd. ``My dizziness increased. I couldn't negotiate with my cane, and I would have gone down if my husband hadn't been holding me,'' she said. ``It had never occurred to me I couldn't go out alone anymore.'' And that's just one of many disappointments faced by victims of ataxia. ``I encounter discrimination all over the place,'' DeVos said. ``I don't have a teaching job, and that's what I'd been expecting to do all my life.'' Despite having a postdoctoral education, DeVos describes her noncareer as that of a ``hanger on'' in the department where she once studied. Pflasterer is no longer able to work as a photographer. ``I had a job that required coordination and the ability to move fast,'' she said. And although Swack continues to work full time, the logistics of getting around have been exhausting. She plays her beloved flute less and less. ``I don't want to play at a less than a professional level,'' she said. ``I once had excellent technique. I miss playing more than I can say.'' The support group goes a long way toward helping the women cope. ``For a while I felt like the only person in the world in this situation,'' Pflasterer said. ``Friendships have been formed because of this group. ``Some of the women have dinner together occasionally, and we talk on the phone. When you have something wrong with you that no one in the world understands, it's nice to have somebody to talk to who has had similar experiences.'' Ataxia help A support group for people with ataxia meets regularly at Meriter Hospital in Madison. It is for people with ataxia (clumsiness or incoordination) due to cerebellar neurodegenerative disorders. For information on the group, call Carolyn Pflasterer at 221-1742. For more information about ataxia, contact the National Ataxia Foundation, 2600 Fernbrook Lane, Suite 119, Minneapolis, Minn. 55447-4752; Phone: (612) 553-0020; Web site: www.ataxia.org; E-mail: naf@mr.net. State Journal photo/Joseph W. Jackson III ``Ataxia is not a foreign cab'' is the message on the T-shirt worn by Carolyn Pflasterer, center. Ataxia is the mystifying nerve disorder that has caused a loss of coordination for Pflasterer, Jeanne Swack, left, and Susan DeVos.