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A Private Struggle

Wineglasses sometimes shatter in his grip, music plays endlessly in his head and he can't always control his twitching muscles. But Alex Greene has made peace with Tourette syndrome.

June 25, 2001|JANE E. ALLEN | TIMES HEALTH WRITER

The cure had become worse than the illness.

For the most part, Alex was a well-adjusted, industrious child who channeled his considerable energy into sports, music and business--enduring pursuits requiring the discipline that may account for much of his success.

At George Washington University in Washington, D.C., he juggled classes, social life and several jobs, including one as a hotel bellman. He had his routine down so well that he would wear wingtip shoes to class, then proceed to work. "Wingtips" became an enduring inside joke among friends and family members, perpetuated for years in his license plates.

After graduation, he surprised everyone by choosing the buttoned-down banking profession, even though he was wearing his hair long.

When he began, he says, "I wasn't the sharpest tool in the shed. I wasn't very sophisticated in terms of finance, business understanding, in terms of being worldly."

But time and some crises in his 30s helped build his self-confidence.

In particular, several periods of self-examination and counseling helped him to understand that he "saw the world in a convoluted way," often doubting himself or fearing that he'd made irrevocable mistakes. With therapy targeting the anxiety and obsessive thoughts that often are part of Tourette, that prism of distortion fell away.

"I realized I was a pretty smart guy and I had been hiding a lot of things and had been afraid of my weaknesses," he says. He decided then to play to his strengths. "I joke a lot. I use a lot of Yiddish. I'm a good listener."

Today, he says, "I'm secure."

Still Searching for the Cause

Since Alex was diagnosed, the medical world has made great strides in identifying and treating Tourette.

In the continuing search for genetic underpinnings, researchers are closing in on regions of two chromosomes, with other areas likely to be implicated as understanding of the human genome progresses. Some see potential roots in interactions between genes and the environment. Others suspect autoimmune involvement, possibly triggered by strep infections.

Dr. James Leckman, a Tourette specialist and director of research at Yale University's Child Study Center in New Haven, Conn., is convinced the higher occurrence in boys than girls--Tourette affects three to four times as many boys as girls--stems from boys' exposure to high testosterone levels in the womb as their brains are developing.

Today, doctors recognize that Tourette comprises a range of treatable conditions and many focus their treatment on the related conditions. Stimulants like Ritalin can blunt the hyperactivity without worsening tics, while newer antidepressants such as Prozac, Paxil and Zoloft can ease the obsessive-compulsive disorder.

Drugs like Haldol, while lessening tics, can create depression, and cause weight gain, social phobia and body stiffness, although some newer medications are well-tolerated by many children.

Medication may be the solution at particular times, says Dr. Leon Dure, a Tourette specialist at the University of Alabama in Birmingham. For example, 7-and 8-year-olds often aren't bothered by tics, but may want medications in adolescence, when tics bring stigma.

Psychologists can help such youngsters feel less isolated and get along better with their families.

That children today with Tourette are better off than their counterparts decades ago became clear to Dure at a support group meeting that drew men in their 50s and one young boy.

"It was amazing," Dure said. "The men told this little boy: 'You are so lucky. You know what you have. None of us knew what we had. People thought we were crazy, weird and eccentric."'

It takes a long time to overcome stigma and stereotypes, says Dr. Cathy Budman, a psychiatrist and researcher at North Shore University Hospital in Manhasset, N.Y., who says the best intervention is educating the child, family and school.

Tourette patients treated long ago "grew up with this sense they were very defective," she says, but the majority of people with Tourette have mild symptoms. "In the scheme of things," she says, "this is something you can live a pretty good life with." For those Touretters with severe symptoms, the social challenges can be greater.

How Tourette Can Enhance Lives

The neurologist Dr. Oliver Sacks, who has written extensively about Tourette in several popular books, has looked at how Tourette can enhance lives. He says the internal phenomena "tend to be vivid, heightened impressions and impulses of many sorts," often involving "a sort of playing with limits, socially, morally, intellectually, physically, a sort of risky adventurousness."

The lack of inhibition can confer "a rich, surprising and sometimes associational freedom" upon those with Tourette.. A drummer Sacks treated years ago harnessed "Tourettic gestures for Tourettic improvisations."

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