Living with Tourette Syndrome, and staying one step ahead of a tic attack


    Sixteen-year-old Adam Fishbein explains what Tourette Syndrome is – and perhaps more importantly, what it is not.

    Americans may not be crazy about the World Cup and soccer – but they certainly seemed to fall in love with American goalie Tim Howard.

    Howard’s stellar performance has also brought attention to a condition that he has been dealing with since childhood – Tourette Syndrome. It’s a neurological disorder that is often the butt of jokes – since people falsely believe it involves swearing a lot.

    Having Howard as somewhat of a Tourette Syndrome ambassador has given hope to people whose lives are very much impacted by this difficult disorder – like 16-year-old Adam Fishbein who is a Tourette Syndrome youth ambassador.  He speaks at churches and schools about what his life is like, to explain what Tourette’s is – and perhaps more importantly, what it is not. Adam has talked about having Tourette’s as long as he has known that he has the disorder.

    Getting a diagnosis 

    “I don’t remember so much about the earlier days,” says Adam, but he does remember hiding under his desk in school and barking.

    “He had a preschool teacher who said ‘get Adam tested,'” said his mother, Rachel Ezekiel-Fishbein. “Adam made it really clear that he didn’t want to behave this way, I remember him telling me, ‘you know I would do anything, not to act this way, I would take medicine mom, why can’t I be in control?'” she said.

    The family saw more than 10 doctors, who all gave Adam a litany of diagnoses. “We had this alphabet soup of disorders, ADHD, OCD, PDD,” said Ezekiel-Fishbein. Finally, when Adam was six, he was diagnosed with Tourette Syndrome. “I was stunned when they said it was Tourette’s.  He wasn’t cursing, he wasn’t twitching, so much of it was just behavior,” said Ezekiel-Fishbein. The diagnosis helped the family recognize that most of Adam’s unwanted behaviors were tics that he could not control.

    Controlling tics and tic attacks

    Adam says he feels lucky because his tics are mild. “I can suppress them sometimes, but then it comes on a lot worse later. I make loud sounds, and I have echolalia, where I repeat what other people say, and you might get how that would come across as just being annoying.”

    He doesn’t get mad about having Tourette Syndrome, but he says he gets emotional, for example when he has tic attacks. “When I have a whole sequence of tics that I can not stop. It can go on for five or ten minutes; it’s hard.”

    Adam takes medications to control his symtoms, and has developed coping mechanisms to deal with his disorder. He recently felt a tic attack coming on while he was in the dorm room of his boarding school. He didn’t want to disrupt other residents, so he asked if he could use the gym. He walked laps, and let his tic attack out, made loud noises, and then returned to his dorm room.

    “When he has a tic attack he has really strong contortions in his face, it’s not only loud but also painful,” said Joel Fishbein, Adam’s father.

    Thinking about the future

    Despite his challenges, Joel Fishbein feels that his son will do well in life. “Watching Adam succeed at all the things he is doing, I don’t really worry whether he will be a successful adult. While there will be setbacks, he can succeed and he has succeeded.”

    Adam says he has chosen to speak out about his condition as a Tourette Syndrome ambassador because he is an extrovert.

    “A lot of people try to hide it. So I see it as the right thing to do. If you are capable and comfortable to become a Tourette Ambassador, you have a voice, you can speak for those people who can not, or will not speak for themselves.”

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