By Amy Silverman
By Olivia LaVecchia
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Now that we've gotten that out of the way, we return you to the Tourette's syndrome support-group meeting currently in progress.
"Yeah, you're in the right," says the meeting's good-natured host as she welcomes a couple of newcomers into a recent monthly gathering of the group. "The AA meeting's down the hall. We're the 'cussing disease' people."
Although several laugh, the 30 or so people assembled in a meeting room at a Glendale hospital realize that there are a lot more symptoms to Tourette's syndrome than uncontrollable bursts of gutter language, a misconception popularized by a widely seen episode of L.A. Law. The people here tonight are all parents of children affected by the syndrome. They know all about the involuntary motor tics--unpredictable spasms that cause their children's eyes to blink, their heads to twitch and their shoulders to jerk. They're aware of the vocal tics that force their offspring to emit unearthly grunts, gurgles, belches and whooping noises. And they're all too familiar with the attendant obsessive-compulsive behavior, attention-deficit problems and intrusive thoughts that frequently accompany Tourette's. Parents know Tourette's as a group of mysterious disorders that compel their children to endlessly repeat pointless rituals, even though the youngsters themselves realize the senselessness of touching objects a certain number of times, or circling answers on their homework so many times they tear a hole in the paper.
Although the hereditary disorder was first identified by French neurologist Georges Gilles de la Tourette in 1825, it wasn't until the past 20 years that the disease was widely diagnosed. In the 147 years prior to 1972, when the national Tourette Syndrome Association was founded, fewer than 1,000 cases of Tourette's had been reported worldwide. But in today's era of increased Tourette's reseach, experts today estimate that as many as 200,000 people may suffer from the condition.
Specialists now chalk up those large numbers to increased awareness of the condition. "I don't think there is actually any more of it than there used to be," says child psychiatrist Anna Scherzer, one of only a handful of doctors who treats Tourette's in the Valley. "We're just aware of increased associated problems or symptoms and we're no longer limiting the diagnosis to the narrow band it was limited to 20 years ago."
Some members of the psychiatric community now see Tourette's syndrome as a model for understanding the brain; in fact, those who have the disease are encouraged to leave their brains to science. Eric Benjamin, a Valley pediatrician active in the Tourette's field for eight years, points to the wide-ranging symptoms associated with the disease, and says, "When you start looking at these, you see a whole cross section of behaviors that represent almost everything in psychiatry."
Tourette's researchers now know that symptoms typically appear between the ages of 5 and 18. Because the disease cannot be detected through brain scans, x-rays or blood tests, a diagnosis is based on the waning and waxing of tics and other related symptoms over a period of time. For reasons that are still unclear, sons are not only more likely to inherit the disease than daughters, but also more apt to suffer from far more severe symptoms.
Like many of adult Touretters, Rick Gayle has learned to cope with the disorder. That wasn't the case 30 years ago, when grade-school teachers believed his quirky behavior was an "attitude problem" and an "attention-getting" device. "I guess my behavior was very disruptive," concedes Gayle, explaining that his inappropriate laughter, inability to inhibit his speech and other uncontrollable antics earned him a reputation as class clown. But the reality was different. "I always felt like a ColorForm, sort of like I was just laid on the surface of things and didn't really fit in anywhere," explains Gayle, a commercial photographer who credits his business success to his Tourette's-related obsession with detail. "Living with Tourette's is like having the Tasmanian devil trapped inside you."
The photographer is now reliving the childhood stages of the disease through his 13-year-old son. Says Gayle, "It's very difficult to look at him and know he's going to have to go through the same things I did." In spite of Tourette's most notorious symptom, the only obscenity heard during this three-hour support session is a solitary utterance of the "F" word, spoken by an angry father as he tells the group of his frustrated attempt to get the principal of his son's school to watch a short Tourette's video over the summer vacation.
"He told me he didn't have time, if you can believe that," fumes the dad. "This guy didn't have 30 minutes free the entire summer?"
"As you can see, we do a lot of school bashing," explains Rick Gayle's wife, Betty, the animated woman who's headed up the Glendale-based support group for the past several years. Judging from the recent meeting held at Charter Hospital, the group also does a lot of insurance-company bashing, doctor bashing, neighbor bashing and medication bashing--even if there rarely seems to be any consensus on exactly who or what deserves to be bashed. After chatting about Denver Nuggets guard Mahmoud Abdul-Rauf, Philadelphia Phillies outfielder Jim Eisenreich and actor Andy Garcia--celebrity Touretters who've publicly discussed their affliction--the group turns its conversation to suspected Touretters who've yet to emerge from the closet. ("Has anyone noticed how David Letterman starts blinking whenever he introduces a guest that makes him nervous?" someone asks. "He's ticking like crazy!")