For Ataxia: No Longer Nowhere to Go
Date: September 1, 2008
If someone published Most Likely Topics of Neurologists’ Anxiety Dreams, ataxia would probably be on the list, along with forgetting an exam or notes for a speech.
The loss of coordinated movement may not be so difficult to diagnose, but telling a patient his ataxia isn’t secondary to hydrocephalus, for example, or to a lack of vitamin E —in short, that it’s progressive and incurable—is disquieting.
That’s one reason that the Ataxia Center at Johns Hopkins opened last spring. Though the condition is rare, Hopkins neurologists have been seeing more than 350 people with ataxia or suspected ataxia each year. And access to the most current imaging and to sensitive bioassays, as well as to the hospital’s immunologists, oncologists and geneticists, puts Center clinicians in a good place to distinguish treatable ataxia from spontaneous or hereditary types. “We take unusual care in our testing,” says ataxia specialist Joseph Savitt, “partly because of that.”
But it’s after primary ataxia has been diagnosed that the Center comes to its best use: to support patients as symptoms progress and to ensure the highest possible quality of life. Most have heard There’s nothing we can do for you. “They feel they have nowhere to go,” says Savitt, “and nothing to hope for.”
“Because we’re not able to cure their ataxia, the interventions we can do, the strategies and the education we offer become extremely important,”explains clinic coordinator Katie McGuire. Patients certainly find benefit from gait-assistance devices, swallowing strategies, targeted speech therapies and medications for hypotension, bladder difficulties, muscle spasms or vision problems, for example.
“I’ve seen patients’ lives vastly improve with physical and speech therapy,” says Savitt, “often to a degree better than medication for some other disorders.” One man, for example, lived his life for ballroom dancing but his increasing unsteadiness cut that short. When aggressive physical therapy brought him back to the dance floor, “he was transformed.”
And not least, the Center’s one-stop experience is a plus. Seeing the neurologist, having speech, occupational, and physical therapists on site with ready access, if needed, to a psychiatrist or ophthalmologist during a day’s visit saves patients the stress of multiple returns.
To refer a patient: 410-955-4894.
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