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Twitch & Shout
They may seem sweet and normal, but Tourette's Syndrome patients can suddenly start twitching, or grunting or cursing without warning. Touretters used to be hanged as witches. Things are better for them now -- people just think they're really weird.
By Sam Boykin
Page 4 of 5
Dillon-Stout says that one of the most effective methods for dealing with TS is simply learning to accept it and understand that it's manageable.
"Many parents are just devastated when they hear that their kid has this disorder," she said. "The child is often scared and feels that their body is out of control. So it's important that both the patient and parent understand what TS is, to not feel guilty or ashamed, and to understand that what they know of TS is usually at the far end of the spectrum."
Dillon-Stout added that how well a patient does later in life depends on how well they deal with the disorder's secondary social and emotional challenges.
"The majority of people with TS are very intelligent and driven," she said. "They have everything it takes to be successful, but because of their obsessive side, they can be their own worst enemy. The majority of people I see with TS are oftentime perfectionists and want very much to please others. But they have this disorder and they don't know how to rectify it, and they very much want to fit into society."
Folks like Gary Fay, 33, and Sarah Overcash, 44, know about these kinds of struggles all too well, both having struggled with TS all their lives. Fay's symptoms first showed up as minor tics when he was a child, but by the time he entered college they had become more noticeable.
"It started with facial grimacing and my neck would twitch, but I didn't think too much of it at the time," Fay said.
Gary went on to graduate school in Texas, but because of the stress involved, his condition continued to worsen, and he eventually dropped out.
"People around me just kind of laughed and thought I was weird," says Fay. "Lots of people just looked away. At first I tried to suppress it, but after a while I just said hey, this is me, take it or leave it." Despite these setbacks, Fay says he hasn't let TS beat him. Today, having earned multiple college degrees, he's a successful software designer in Raleigh. Fay is also helping organize a NC Chapter of the Tourette Syndrome Association (TSA), a voluntary, nonprofit organization that serves people with TS, their families and friends. The Association funds research, provides services and support to patients and their families, and offers a variety of publications.
Overcash, who grew up in Charlotte, first started showing TS symptoms like throat clearing and self-abusive behavior like hair pulling when she was eight. But she wasn't officially diagnosed until 20 years later.
"At the time not much was known about TS," she said. "When I was young, my parents took me to a pediatrician, and he just said I'd outgrow it. But when I reached the 11th grade, everything just sort of exploded. My whole body started ticking. I went to a neurologist and he didn't know what it was either. I was so frustrated and angry at that point, I just gave up."
Overcash eventually moved to Montana where she attended nursing school; the stress there only caused her symptoms to get worse. As a last ditch effort, she went to the Mayo Clinic in Minnesota, hoping they could explain what was wrong with her.
"Within 20 minutes they diagnosed me with TS," she said. "By then I already suspected that's what it was, but it was still a big relief to finally be diagnosed."
Overcash soon discovered, though, that just because her disorder had been identified didn't mean her struggles would vanish. After graduating nursing school, she landed her first job in Charlotte at what was then Charlotte Memorial Hospital (now Carolinas Medical Center). After eight weeks she was asked to leave.
"They told me I was going to have to stop twitching or leave," she said.
Overcash next landed a job at Presbyterian. This one lasted four weeks.
"They said I would just be better off working in a nursing home, but I knew it was because of my Tourette's."
Demoralized and frustrated, Overcash left the nursing field, moved several times, got engaged, and eventually moved to Montana where she earned a Bachelor of Science in Health and Physical Ed. But things still weren't working out.
"My self-image was so distorted and, emotionally, I was a wreck," she said. "Those first experiences in Charlotte really messed me up. It destroyed my confidence."
All this time, Overcash had also been wrestling with a drinking problem, a symptom of her compulsive personality, which is typical of many TS patients. She finally checked herself into an alcohol treatment center in Minnesota.
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