Dystonia Specialist Babylon NY

Life with Dystonia

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By Ellen L. Weisberg, PhD

Dystonia is the third most common movement disorder, next to Parkinson’s disease and Tremor, affecting at least 300,000 people in North America. It is a neurological condition that results in sustained and involuntary contractions of opposing muscles, which leads to spasmodic movements, twisting, and abnormal stances. Like Parkinson’s disease, dystonia is believed to be due to an abnormality in the basal ganglia of the brain, where movement is controlled.

The symptoms of dystonia first surfaced when I was in the middle of a radio shift, getting ready to record what I thought would be another effortless 30-second broadcast in a string of reports. Halfway through it, the left side of my mouth started twisting inward, making it difficult for me to talk. At the time, I remember wondering if there was something with my delivery style that had- over time- become subtly different… Was my chair too high or too low and I was straining my neck to get to the microphone? Did it have to do with the amount of gesturing I was doing with my hands when I talked?

As time went on, though, the difficulties I was having with my broadcasting increased, and getting the job done comfortably and in a timely fashion was becoming more and more of a struggle. My coworkers thought that maybe I was having sudden “stage fright,” or that it was simply stress that was causing this, since my conversational speech away from the microphone seemed normal. It was only when I saw a neurologist that the situation became clearer: I was diagnosed with a “focal dystonia,” which targets a specific part of the body and usually afflicts people at mid-life. My condition, “task- specific oromandibular dystonia,” causes the jaw to either be clamped shut or held open and is brought on at least in part by repetitive movements. I had been doing two and a half years of daily broadcasting for hours on end, repeating similar phrases and articulating in a way that was different from my regular, away-from-the-microphone speech. I tried to return to broadcasting several times when the symptoms of the dystonia had temporarily quieted down, only to have to quit again when the condition would relapse. The symptoms eventually slipped over into my conversational speech, and there were times they were so debilitating that I thought I’d never be able to hold a normal conversation again.

I had consulted a second neurologist who prescribed Artane, an anticholinergic agent that improves muscle control in Parkinson’s patients. After a brief honeymoon, “fool’s gold”-kind of experience with the drug that lasted only a few days during which my speech seemed more effortless, the Artane lost its effects. My neurologist also tried administering Botox injections on the side of my mouth where muscles were twisting in such a way as to make speaking difficult. However, it was shortly after the injections that the condition relapsed to the point where I could barely talk at all. Continuing...

Author: Ellen L. Weisberg, PhD

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