An estimated 200,000 Americans have the most severe form of Tourette syndrome, a neurological disorder sometimes marked by outbursts of jerking or swearing. In addition, as many as 1 in 100 exhibits milder symptoms of the disorder. TS is usually treated with drugs, including antipsychotics and antidepressants. While they can be effective in controlling symptoms, they are often accompanied by bothersome side effects, including lethargy and weight gain. Now, with the help of a $5.4 million grant from the National Institute of Mental Health, researchers at six universities, including UCLA and the University of Texas at San Antonio, are taking a fresh look at HRT, which was originally developed in 1973 as a treatment for problems like chronic nail biting. The results so far have been encouraging. HRT has “the potential to bring significant relief to TS sufferers without the serious side effects characterizing most TS medications,” says Dr. John Piacentini of UCLA.
In theory, HRT substitutes a competing action—looking at a watch, for example—for a disabling or socially embarrassing tic. Patients undergoing HRT learn to recognize the so-called premonitory urges that precede their tics. They are then taught how to counteract the approaching tic with an opposing response. Before a tic, Marg says, she feels “energy in my body that feels like it needs to get out. It’s like a balloon.” Rick Shocket, 9, also undergoing HRT therapy at Duke, has had a tic that involves squatting after every step. To divert it, he’s been taught to lock his knees and count to 60 when he feels it coming on. After just three therapy sessions, he has managed to get a handle on the squatting and many of his other tics, which include neck jerking and eye movements. HRT is “another tool in my tool belt,” he says.
Yet the treatment remains controversial. Many doctors believe tics can’t be suppressed, or that suppressing them only aggravates them, though more than two dozen studies suggest that isn’t so. “We don’t see a particularly important role for the behavioral therapy,” says Dr. Roger Kurlan, a neurologist at the University of Rochester, who usually uses medication when his TS patients need treatment. “I’m not sure it has any effect on the underlying condition.” Critics also complain that depicting tics as “habits” that can be reversed ignores the underlying biology of Tourette’s. (Imaging studies suggest that tics involve a disruption of normal brain processes.) “We in the Tourette community have fought hard to get insurance companies to understand that this is a genetic neurological disorder,” says Leonard Misner, 39, who has Tourette’s and opposes HRT. Dr. Alan Peterson, an HRT researcher at UT San Antonio, says TS, like other disorders, can be behavioral and biological. “There are all kinds of medications and genetic work being done to help people with type 2 diabetes. But the largest study that’s been done proved lifestyle modification can cure it.”
David Retano, 34, welcomes the new approach. He tried HRT after years of severe tics, including swearing and punching himself. He’s managed to control nearly all the tics involving his face and head. A troubling one remains, though: his tendency to thump his wife when they embrace. “I just don’t hug her much,” he says. Perhaps with continued HRT, they’ll finally be able to snuggle in peace.
