The Trials of Living With Tourette Syndrome

The Trials of Living With Tourette Syndrome
Doctors and therapists hope to bring relief to those with the odd condition.
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Kyle Lee was "pumped up" to see his idol Sylvester Stallone in "The Expendables" on opening weekend. But just 20 minutes into the Saturday evening screening, after he and his girlfriend settled into their seats with popcorn and drinks, the theater manager asked Lee to step outside. The manager had received a dozen complaints about Lee's verbal and physical tics.

Lee, 28, who has struggled with Tourette syndrome since age 7, had gone out of his way to choose seats to the side of his local theater in Wichita, Kan.

"I do that to be courteous. I do have a disability," he said. He recalls having perhaps three bouts of twitchy tics and throaty clicks during those opening minutes, but thought they would be drowned out by the loud action film.

After Lee pleaded his case, the manager apologized and then gave him a choice: watch from the smudge-windowed "cry room" where mothers soothe and breastfeed crying babies, or take his chances with the 10 p.m. screening and see if people would complain again.

Irate and disappointed, Lee asked for his money back, telling his equally incensed girlfriend, "Honey, just get the car ready."

Retelling the story a month after the incident still angers him: "This isn't the first time this has happened to me." When Clint Eastwood's "Gran Torino" came out, "I got kicked out of the exact same theater."

These humiliations cap 21 years of trying to prove himself in high school sports while being forced into special education classes despite testing high enough for regular classes.

As an adult, he's been unable to land full-time work: "Every time I go to apply, they see me 'tourette,'" he says. Today he works as a handyman.

Tourette Today: More Acceptance, But Also More Shunning

Doctors and therapists are working to help those suffering with Tourette syndrome to get relief from the verbal and physical tics that characterize the neurological condition. Those with Tourette uncontrollably spew words, guttural sounds, barks, or throat clicks, and rapidly, repetitively move their heads, necks, arms, or legs in ways that can be distracting to others. Only a minority suffer from coprolalia, the involuntary cursing often misperceived as a frequent Tourette symptom.

Today, more of the estimated 200,000 Americans with Tourette participate in school and mainstream activities, thanks in part to better education about the disorder, which has been portrayed in a variety of movies, television shows and news programs. "Tourette Uncovered," a documentary airing on Discovery Health Channel on Monday, portrays four children coping with varying degrees of symptoms -- ranging from annoying to disabling -- and trying to overcome the associated stigma.

A particular tic "may wax and wane in its severity and frequency, it may change in location, and that in part contributes to the mystery of Tourette syndrome," Dr. Cathy Budman, director of the Movement Disorder Center in Psychiatry at North Shore University-Long Island Jewish Health System in Manhasset, N.Y., says in the documentary.

The syndrome was named for Dr. Georges Gilles de la Tourette, a French neurologist who diagnosed it in an elderly French noblewoman in 1885 and tried treating it with isolation, tonics, hydrotherapy and static electricity. Tourette usually appears before the age of 18 and is three to four times more common in boys than in girls. There is no laboratory test to confirm it; instead, diagnosis is made by observation over time.

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