Raising awareness about dystonia

January 13, 2013 7:02:16 AM PST
More than 250, 000 people in the United States are diagnosed with dystonia, a movement disorder that affects people differently.

Most people don't know about dystonia, but once they do, they can seek help.

Thirty-eight years ago, Marilyn Wasserman was diagnosed with dystonia.

"I fell down the stairs on my chin, I got up, and I said, 'Oh my goodness. I'm feeling fine.' I thought maybe I broke my neck. Two weeks after that, I was on the floor in such pain," Wasserman said. "Then, I went to an orthopedic doctor. He said, 'Stand under a hot shower.'"

"Then, I found a neurologist that actually told me I had spasmodic tortichollis, but I should see a psychiatrist, which I didn't accept," said Wasserman.

This was a difficult time for Marilyn being a young mom with two small children while her husband worked full time.

"Those first five years, I was in terrible pain. I mean, my head was crooked. It was very embarrassing, and besides, I was dealing with all this pain. I couldn't interact with people," she said.

Marilyn's cervical dystonia is the most common.

"People think they just got a bad neck, a crick in their neck, and sometimes, they just sort if let it go. It depends on the severity of the dystonia that really drives people to pursue getting a diagnosis," said Janet Hieshetter, executive director of Dystonia Medical Research Foundation. "People still have to go from doctor to doctor though. We have a lot of work to do in educating the medical community about dystonia."

After receiving different treatments for her pain, Marilyn got the deep brain surgery, which seems to work the best.

"I still kind of pace myself. I need to rest in the afternoons. I need to rest my neck some. Sometimes, it gets to be very wearing to keep it -- you know -- in order and straight, but I can do just about anything," she said.

"I will always stop if I see somebody whose head is turning or whose looks like they have dystonia. I still stop and try to share with them that there are doctors that treat this," she said.

For more information about dystonia and resources available go to www.dystonia-foundation.org.