'American Idol' segment helps push Tourette's syndrome into cultural mainstream

By Anne Miller
Special to The Washington Post
Tuesday, April 13, 2010

Glass shards glistened sharply in a pool of water on the kitchen floor. My mom assured my fiance, Michael Davoli, that the old cheap glass didn't matter, but he still looked shell-shocked. He was always so careful to place drinks safely in front of himself: Anything too near his hands could be toppled. He helped my mother pick up the pieces and said he hadn't knocked over a glass in years.

Such is life with Tourette's syndrome.

Most people know the stereotype of unpredictable and uninhibited cursing or barking. Those symptoms do exist, for some people. But the truth is much more complicated. Michael, who has been my husband since August, doesn't curse unless he wants to. But as with the majority of people with Tourette's, there are myriad ways his inability to control some of his movements affects how he navigates his days.

How and why people develop Tourette's remains a mystery. Research indicates a genetic tie: Those with Tourette's have a 50 percent chance of passing it to their children, and it's not unusual for someone with Tourette's to have a relative who also has the syndrome. The condition typically manifests in grade school, often with rapid eye blinks, and more often in boys than in girls. Medical experts estimate that as many as one in 100 people suffer from Tourette's. It is also associated with creative personalities: Composer Wolfgang Amadeus Mozart, writer Samuel Johnson and jazz great Thelonious Monk may have had it. In the sports world, Jim Eisenreich, who won a World Series with the Florida Marlins in 1997, and Tim Howard, a goalie on the U.S. national soccer team, live with Tourette's.

Tourette's was identified in the late 1800s by French neuroscientist Georges Gilles de la Tourette, who published the first paper describing the symptoms. Although the involuntary twitching, grunting, grimaces and humming of Tourette's are often painfully public, most doctors didn't realize until the late 1970s or early 1980s how common it was.

Although many people with Tourette's shy away from the spotlight for fear of drawing attention to their tics, lately the syndrome has moved to the pop culture forefront. In 2008, the TV movie "Front of the Class" told the story of Brad Cohen, who overcame Tourette's to become a standout teacher and author. David Pittman, a singer from Arkansas, made headlines this year after "American Idol" aired a short feature on his Tourette's, and one of the judges asked Pittman about his tics at his audition. (Pittman didn't make it to the final rounds after forgetting the lyrics to a song.) And Jumaane Williams, elected to the New York City Council last year, is the only elected official in the country to openly discuss his Tourette's, according to the Tourette Syndrome Association.

And political cartoonist Jeff Koterba published a memoir, "Inklings," that in part describes his life before and after receiving a Tourette's diagnosis in adulthood. "What I find most intriguing," he writes about the day of his diagnosis, is that "Dr. M explains that many, if not all, of those suffering from this syndrome are musicians, artists, photographers, writers."

On his Web site, Koterba, whose drawings appear in many newspapers, has a Twitter feed labeled "Latest Twitch." His father has Tourette's, also identified long past childhood. "He's the product of the Great Depression; he couldn't afford a syndrome," Koterba said in an interview, paraphrasing his father. Koterba was given his diagnosis years after his symptoms -- what his father called Koterba's "nervous habits" -- began showing up.

In addition to such obvious tics as blinking and grimacing, common Tourette's behaviors involve head nods and hand and foot movements. Sometimes muscles that no one can see will move of their own accord, such as those around the stomach. Soft coughs or grunts, audible only to those nearby, might comprise the vocal part. Koterba had a hiccuplike problem that once sent him to the hospital. When he was younger, Williams, who is now 33 and represents parts of Brooklyn, sometimes felt compelled to shout "asshole." He tried to satisfy both his compulsion and school rules by saying, loudly, "AH!" and then whispering "hole."

My husband, who was given a Tourette's diagnosis in grade school, developed a vocal tic -- a deep hum -- years later during a particularly stressful few months of changing jobs and moving. The hum came and went for minutes at a time, irritated his throat and, even worse, interrupted him when he spoke, forcing him to trip over his words and lose his train of thought -- not an ideal situation in a job interview.

Harvey Singer, chief of pediatric neurology at Johns Hopkins Children's Center and a Tourette's specialist, said about a third of people with the syndrome will see their tics increase as they age. Another third will remain constant through their lives, and the final third will grow out of their tics by their 20s.

Koterba says he's a perfect example of changing as he ages. As a child, his tics included sticking his tongue out. "That's not a good thing when you're in a car with your parents and the Hells Angels are riding by," he said recalling one incident. In addition to drawing political cartoons, Koterba performs in a band, and sometimes "my eyes do a weird thing, my mouth is doing a weird thing and my foot wants to touch the bottom of the speaker," he says. "I try to turn it into dancing." Occasionally, he's "gone retro," he says, and unintentionally stuck out his tongue.

Still no cure

When you ask someone what's it's like to have Tourette's, it's most commonly compared to a really, really bad itch. You don't want to scratch it, but the longer you wait to scratch, the more it itches, and the more you can't stop thinking about it, until you can't think about anything else. The longer you wait to give in, the harder you have to scratch.

According to numerous medical studies, Tourette's often comes as a package deal with attention-deficit and obsessive-compulsive disorders. Learning disabilities can appear, too: It takes longer to read a page of text if you're blinking constantly and can't focus on more than a few words at a time.

Williams said his mother fought hard against school officials who wanted to put him in special education classes. He suffered from attention-deficit disorder, and teachers thought his tics were just a way of acting out -- a common misconception. He wasn't identified as having Tourette's until ninth grade.

Williams speaks out so much about his Tourette's in part, he said, to educate teachers and families like his. "There's still a lot of people who won't believe you, who think you're making it up," he said, although he has the back pains and occasional burns to prove it. His twitches aggravate his back muscles, and he struggles to keep his hand still as he carries a cup of tea. Before he knew he had Tourette's, he broke a glass in his mouth, hitting it against his teeth.

Although scientific understanding of Tourette's has improved in recent years and researchers have found some drugs that can dampen the syndrome's effects, there's no cure.

The drugs used to treat Tourette's are more commonly used for other diseases, but for reasons doctors still don't entirely understand, can also help reduce tics. My husband takes clonidine, a blood pressure medication also prescribed for smokers and alcoholics trying to quit. The medication can leave him exhausted.

Bruce Ochsman, a senior vice president at UBS Financial Services in Bethesda, tried 26 drugs over several years in an attempt to corral his tics. Ochsman, who serves on the Tourette Syndrome Association board, eventually decided to skip the medication and focus on de-stressing his life: Stress can trigger tics, and the medications had too many side effects.

Many with Tourette's find that when they concentrate, particularly on something creative, their tics stop. On "American Idol," for instance, Pittman sang before a television audience of millions without a single twitch. Just losing yourself in music seems to help many others. My husband is a huge fan of the jam band Phish. At concerts, the line between dancing and twitching fades for him. The parents of a child with Tourette's heard about Michael's Phish "phan-dom" and reached out to him not long ago to say that their 8-year-old had gone to his first Phish show and loved it: For once, his movements didn't make him stand out in a crowd.

Of course, there are plenty of times my husband can't control his muscles. His feet twitch as he falls asleep; as a result, our dog usually sleeps on my side of the bed. Like everyone with Tourette's whom I interviewed for this story, Michael started twitching more, and more rapidly, the more he talked about his condition.

Now that we're married, people with Tourette's or parents of kids with Tourette's sometimes put Michael on a bit of a pedestal: He got through school, he has a good job and he married. That's probably the biggest concern of Tourette's sufferers and their relatives: Will their life be normal?

At a recent public appearance, Koterba met a mother and her young daughter with Tourette's. The woman asked Koterba if her daughter would have a normal life. It broke his heart, Koterba recalled. "No," Koterba told the girl. "You're going to have a great life. An amazing life. A creative, beautiful, wonderful life."

Miller is a freelance writer and news producer in Brooklyn, N.Y.

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