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Saturday, June 2, 2007

Speaking is difficult, but it brought national honors: Dystonia patient advocate

Speaking is difficult for nurse Linda Cannon-Mott and other individuals with dystonia, a common movement disorder. But it is speaking out that has brought the Dystonia Support Group of Alabama national honors.

The National Spasmodic Dysphonia Association has named Linda the Midge Kovac award recipient for raising awareness about the disability.

"When you have it (dystonia) you have a lot of emotion; you’re whole quality of life changes,” she said. “When you talk like this and your head shakes, people stare. I wasn’t comfortable going to church or the grocery store."

Linda, a resident of Alabaster, Alabama, was misdiagnosed for 16 years. The entire time she was told she had benign essential tremor and took 12-15 medications. None of those medications helped her and eventually she knew why. She had a voice disorder ("spasmodic dysphonia").

This is why she believes it is so important for the Alabama group to exist.

"We want to prevent other people from being misdiagnosed, let people with the disorder know there is a support group and help other people understand the disease,”"Linda said.

The Dystonia Support Group of Alabama is also being honored by the Dystonia Medical Research Foundation as "Support Group of the Year." The group was recognized for its awareness and fundraising campaigns, including the distribution of thousands of bookmarks with Dystonia information as well as raising $30,000.

More than 300,000 people are affected by the disorder. There is no cure, but it can be treated with multiple shots of Botox. The same chemical that many use for cosmetic reasons helps paralyze muscles and decreases the number of spasms in the body’s extremities.

Advice: Forward this to friends with movement disorders.

Read another story of an activist with a movement disorder, or read Samantha Hall’s source story.

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