DIANE MAKAR MURPHY Growing up with Tourette's syndrome

An e-mail sent to me Feb. 17: "Dear Diane Murphy: Hi my name is Daniel. It is very weird having Tourette syndrome because you do all these weird things like blinking constantly, grinding your teeth together, snorting, and sniffling. The way people treat me is not very nice at all. For example some of the kids that live in Painesville around the corner from my grandpa's house call me Tic Tock the Clock and I don't like that at all. Plus my brothers call me Ticky Boy. The way I would like adults to treat me is like a normal pre-teen. Your friend, Daniel."
Flashback, 1992: Profanities exploded from his mouth in terse, repetitive volleys. His body, too, seemed out of his control. At regular intervals, his right arm and shoulder jerked toward his ear.
I ushered my toddlers closer to me and waited, hoping the fellow I had seen shouting on various Tucson, Ariz., street corners, would leave the pizza parlor. Knowing far too little to make such an evaluation, I decided the young man was schizophrenic and dangerous.
I later found out he had Tourette's syndrome, a neurological disorder (the cause of which is unknown) that manifests in vocal or movement tics. The only danger that day was from ignorant people like me -- just ask Daniel.
Hidden tic: Flash forward, 2002: It's Boardman resident Robb Arent's fear that he'll be lumped into the same category as the seemingly out-of-control fellow in Tucson. Although the 27-year-old has Tourette's, it is in a form so mild that during our entire 90-minute interview, I saw not so much as a ticcing eyelid.
"You would if you looked closely," he confessed. "I'm really good at repressing. It's a struggle within, like a devil on your shoulder." Later, he said, he will likely explode with tics -- a "payback" for having maintained a "normal" appearance for an hour or so.
But even at his worst, Robb isn't like the Tucson sufferer. "That's the image people have when they hear Tourette's syndrome. On TV, it's always someone ridiculous or exaggerated," he said. "I won't put it down on job applications because I know people will expect the stereotype."
Beginnings: Phyllis and Lee Arent, Robb's parents, noticed Robb was hyperactive "as soon as he could walk," according to Phyllis. "He started eye-blinking at 5. The tics would wax and wane for a three-month period." The eye doctor could find nothing wrong.
Then Robb started arm-thrusting, pushing both hands down at his sides. Next, he began to clear his throat compulsively. "I'd ask him why," Phyllis said, "and he would answer, 'I don't know, Mom.' " The family doctor found nothing wrong. The allergist was baffled.
By first grade, his teacher at Robinwood Lane Elementary School reported that his behavior "disrupted the class," Phyllis said. But a diagnostic clinic ruled out attention deficit disorder. The school, as baffled as the Arents, recommended an SBH designation -- severe behavioral handicap -- beginning in the second grade.
A boy who had trouble controlling involuntary tics found himself in a class with children suffering from severe emotional problems. "I was isolated; I was paddled; I was often sent home from school," Robb recalled. Isolation was a desk surrounded by partitions, presumably to limit distractions.
The SBH classroom moved from year to year and school system to school system. Robb started at Dobbins in Poland, then followed the SBH class to Hilltop in Canfield.
Breakthrough: When Robb was 10, a column by Ann Landers mentioned Tourette's, and the Arents went to a neurologist, who confirmed their suspicion. "After diagnosis, I was put on medication, and the Tourette drastically reduced," Robb said.
"I should have been upset [to find he had Tourette's], but I was so relieved," Phyllis said. She came back from the neurologist, eager to share what she had learned, but it was still to be an uphill climb.
More in Thursday's column ...
murphy@vindy.com