Published: Sunday June 1, 2014 MYT 12:00:00 AM
Updated: Sunday June 1, 2014 MYT 8:51:54 PM

'I have Tourette's, it doesn't have me': Overcoming mysterious, misunderstood syndrome

In the hand: Leyton, the goalkeeper for Kennedy Catholic, hasn't let Tourette's inhibit his ability to play soccer, and he plans to continue playing in college in Oregon. - MCT

In the hand: Leyton, the goalkeeper for Kennedy Catholic, hasn't let Tourette's inhibit his ability to play soccer, and he plans to continue playing in college in Oregon. - MCT

Athletes with Tourette Syndrome inspire, as well as compete in their respective sports.

He stands in the batter’s box, his head on a swivel, jerking in every direction. He looks at the umpire longer than the pitcher, holds the bat in one hand and punches himself in the ribs with the other.

Somehow, fighting the full-blown episode of his Tourette Syndrome, Kellen Webster sees the pitch he wants and plows it up the middle for a single. And his father doesn’t know whether to laugh or cry, so he does both.

“He was doing what he loved and, selfishly, I was inspired,” a tearful Todd Webster said of the experience in 2012, the summer before Kellen’s junior year at Bothell High School, Washington, United States. “I tell people all the time that it was the worst thing I’ve ever seen, but at the same time, the best thing I’ve ever seen him do. It was very uplifting.”

Leyton Thommasen’s tics are much more subtle, and many who watch him tend goal for the Kennedy Catholic soccer team have no clue that he, too, has Tourette’s. His is a milder form, yet like Kellen, he has overcome obstacles to excel athletically and academically.

Together, they epitomise the motto splashed across the Tourette Syndrome Association website: “I have Tourette’s, but Tourette’s Doesn’t Have Me.” They inspire family and friends, most awed by their accomplishments. They refuse to let Tourette’s stand in their way and hope their stories will motivate others to compete.

'An itch that won't go away'

Imagine an itch that won’t go away. One so insistent and irritating, you can’t suppress the urge to scratch it. Now imagine that itch inside your head. That’s how Leyton describes his Tourette’s. “I can’t scratch it by hand,” he said. So, Leyton twitches his head for relief — sometimes even on the soccer field — and it feels like a good fingernails-down-your-back scratch, at least for the moment.

Kellen’s eyes grow wide at hearing Leyton’s depiction. “That’s exactly what it feels like, having that itch, and the only way you can try to make it go away is to move it,” he said.

Both 18-year-olds also suffer from Obsessive-Compulsive Disorder (OCD) and Attention Deficit Hyperactivity Disorder (ADHD), often sidekicks of Tourette’s.

Kellen’s Tourette’s was diagnosed at age five, when he began making loud humming noises — head movements are rare and his only tic seems to be elongated eye blinks. His condition has improved drastically over the past year, through medications and a new behavioural treatment, although a back injury prevented him from playing basketball and baseball as a senior at Bothell High this year.

Leyton was about the same age when he displayed a verbal tic — a frequent clearing of his throat — and a preschool teacher once told his parents he was too disruptive to be in class.

But it was just last spring that Mark and Denise Thommasen sought an official diagnosis for what they had already surmised — that Leyton already controls on his own.

Just as Tourette’s varies in severity, so parents find different ways to deal with it, according to Dr Geoffrey Wiegand, a clinical psychologist at Children’s Hospital in Seattle who specialises in Tourette’s and OCD.

“Nobody wants their child to have anything wrong,” he said, noting some parents might not notice subtle tics. “A lot of people will say, ‘They’ll grow out of it’, and a lot of times that’s the kind of advice paediatricians are giving parents.”

As many as 30% actually do grow out of it, according to Dr Wiegand. “The unfortunate thing is we don’t know which 30% that’s going to be,” he said.

An Oprah moment

Denise’s OMG moment came while watching Oprah when Leyton was in seventh grade. He’d gone through myriad maladies — from hearing loss (he once wore hearing aids) to peanut allergies to being hot all the time. It always seemed like one little thing after another. Denise never considered Tourette’s, until she watched an Oprah show featuring a boy who displayed many of Leyton’s characteristics.

“I watched that show, and it just hit me, oh my God, he has Tourette’s,” she said.

Mark wasn’t buying it, although he now admits he was in denial. “In the back of my mind, everything added up,” he said.

Leyton thrived in school and sports, especially soccer, and for the most part controlled his tics — although his neck and hand movements were particularly bad as he reached puberty, when Tourette’s tends to peak. “You would have thought he was a third-base coach with all the tics he was doing,” Mark said.

But none of them, including Leyton, thought he needed any outside help. Only when he struggled a bit in a Spanish class last year, did they decide to seek an official diagnosis. Students with disorders like Tourette’s often receive special considerations for taking tests, like additional time. But once afforded that opportunity, Leyton turned it down.

“He decided he didn’t want to be treated any different,” Mark said. “He wanted to be like the rest of the kids.”

Leyton, a B-plus student who will attend and play soccer for Pacific University in Oregon, shrugs off his disorders and is genuinely more annoyed by his mother’s overprotective nature (she is a self-proclaimed mama bear) than the fact he has Tourette’s. “I honestly don’t care,” he said. “I’m one of those people who likes to block things out.”

Shrugging it off

For a while, the Websters thought their son’s Tourette’s might be mild, too. Most of Kellen’s verbal tics quieted down until he reached junior high, and then some mild medication helped.

His Tourette’s flared up occasionally, but he sailed through his sophomore year in high school as a starter in basketball and baseball. A six-foot-three guard, Kellen flew onto the college recruiting radar by hitting eight three-pointers at the 4A state tournament, one shy of the record.

Then the wheels fell off that summer as his Tourette’s raged. His head nearly spun like a top, and he punched himself black and blue. He clapped and clucked and barked, and during one baseball game, his mouth stuck open.

His parents had a neurologist on speed dial and Kellen tried multiple medications. He began working with Dr Wiegand and became one of the first in the state to learn Comprehensive Behavioural Intervention for Tics (CBIT), which ultimately worked wonders.

Kellen was able to play basketball — sometimes sinking three-pointers with his head turned away from the hoop — until he suffered three concussions, his balance a casualty of his meds. He returned for baseball, but quit batting partway through the season for safety reasons — he might get beaned not watching the ball.

His team, the Cougars, reached the regional tournament, when Kellen selflessly told his coaches the team had a better chance with someone else at shortstop as his condition flared again. They lost to Kentwood by a run. 

While Leyton’s Tourette’s hasn’t affected his athletic abilities, Kellen wishes he could say the same thing.

Tics have never made Leyton miss a soccer ball and he is among the top goalkeepers in the state. And he has a role model in Tim Howard, goalkeeper for the US National Soccer Team who has Tourette’s.

Kellen’s coaches say he could play at least Division II baseball and/or basketball, when his condition is under control.

Dr Wiegand said he believes sports can be therapeutic for Tourette’s patients, especially those with depression, like Kellen. “Physical activity and social activity are really the two anecdotes to depression,” he said. “And for those not doing well in school, it gives them another area of their life where they can excel and base their self-esteem.”

But Kellen admits one reason he didn’t push returning to the baseball team this spring, if his back allowed, was the fear his symptoms would rear again. “I don’t want to sound overdramatic, but it was kind of scarring,” he said of the struggles. “I didn’t really want to risk it.”

Yet, he asks for no one’s pity. “It was hard for me to have the game taken away from me like that, with what I have, but my dad always says it will make me a better person, because everyone’s going to face adversity, and I face it a lot, which I think will make me a better person,” he said.

A month ago, Kellen thought he’d give up baseball and basketball to attend Washington State University, but he recently reconsidered and might pursue both at Bellevue College. “I missed it,” he said.

About Tourette’s

Tourette Syndrome is a neurological disorder characterised by repetitive involuntary movements and vocalisations called tics. The disorder is named for Dr Georges Gilles de la Tourette, a French neurologist who, in 1885, first described the condition in an 86-year-old French woman. Males are affected about three to four times more often than females. Most people with the condition experience their worst tic symptoms in their early teens. – The Seattle Times/McClatchy-Tribune Information Services

Tags / Keywords: Lifestyle, Health, Health, Fitness, Tourette Syndrome, Tourette s, neurological, condition, ailment, coping, tics


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