Saturday, June 01, 2013

The Voices of Tourette’s Syndrome

Stuart Isett for The New York TimesBernadette Witty, a 41-year-old mother from Washington State, is one of seven people with Tourette’s syndrome featured in the latest installment of Patient Voices.
Tourette’s syndrome is an odd and little understood disorder, characterized by sudden jerking movements and uncontrollable tics and vocalizations.
It’s estimated that three of 1,000 children in the United States have Tourette’s. Although the cause of Tourette’s is unknown, studies suggest it is related to abnormalities in the brain circuitry and the neurotransmitters that help nerve cells communicate.
For a fascinating look at the people behind the disorder, listen to the latestPatient Voices feature from the producer Karen Barrow. You’ll meet:
Louis Centanni, 24, of Deptford, N.J.: Mr. Centanni, a comedian and actor, notes that his tics disappear when he is acting and focusing on a character. He says he is comfortable being “the funny guy with Tourette’s.” “I always love making people laugh. How can you not laugh at this disorder?” he says. “It doesn’t cut my lifespan. I’m not sick because of it. It just makes it really hard to shave.”
Bernadette Witty, 41, Bainbridge Island, Wash.: Ms. Witty says that walking in open spaces and clutter can exacerbate her tics. “This is what I have and what I live with,” she says. “You learn to take what you get.”
Cameron Crane, 16, of Prairie Village, Kan.: Mr. Crane says his tics make it tough to concentrate at school, and he often gets headaches and a sore neck as a result of his tics. He’s particularly bothered when people stare. “It gets really annoying, and you feel like an outcast,” he says.
Marc Elliot, 24, of St. Louis: Mr. Elliot compares Tourette’s to having an “itch” that forces him to say inappropriate things. “It’s incredibly painful not to say it,” he explains. He also talks about dating with Tourette’s, and tics that cause him to say another girl’s name or “you’re fat.” “With girlfriends, you need to find someone who is really understanding,” he says. “You do have to find someone who can laugh at it.”
Stephen Michael McCall, 32, of Virginia Beach: Mr. McCall tried to hide his Tourette’s much of his life. Now a minister, he has decided to talk about Tourette’s to help others. ”It’s like I’m making up for all the time when I was 15 and 14 and I could have encouraged someone who was 6 or 7,” he said. “I’m making up for that time now.”
Brad Cohen, 36, of Atlanta: A teacher, Mr. Cohen explains his disorder to students by comparing it to their need to blink on a regular basis. He tells them that in addition to blinking, his brain instructs him to make funny faces and noises. “I think the biggest misconception about Tourette’s syndrome is that it’s a cursing disease,” he says. “That’s not the case. I don’t say bad words, or at least I can’t really blame it on Tourette’s syndrome.”
Kellie Haines, 35, of Vancouver: Ms. Haines, a ventriloquist, said a tic caused her to mimic people, and she learned to do voices without moving her lips. One of her puppets, Magrau the Bird, also has Tourette’s, which she uses to educate children about the disorder.

1 comment:

  1. Hi. My name is Tammy, and I too have Tourette Syndrome. I wanted to know if you would be interested in participating in a Doctoral research project. This research project is approved by Fielding Graduate University and has a supervisory Internal Review Board, as required for human subjects research. I an certified by the NIH, and am supervised by a Dissertation committee, just to let you know it's legitimate research.

    The topic of the research is the positive and negative treatment experiences encountered by persons with TS or comorbid TS from the onset of the treatment experience, and recommeded changes in treatment, especially in regards to counseling options. In my research I write my story, and then get the perspective of 5 other people with TS. Let me know if you want to help out with this very important topic. All you really would have to do is be available for a 10 question in-depth interview, which I would explain. Thanks. Have a wonderful day. Email me at livingfaithcounseling@gmail.com if you are interested. Sincerely, Tammy Povich, MHS

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