Living successfully with Tourette syndrome - includes related information

Nutrition Health Review, Summer, 1996 by Lori B. Okonski

"Go home and take care of that cold," they said, concerned for the youngster continuously sniffling from the back seat of the car while on a trip with his father and friends. Six months later, however, the "cold" remains, and the sniffling seven-year-old begins to wonder why he seems different. Like the increasing pressures of a volcano about to erupt, the wonder and anxiety surrounding his behavior intensify over the next 16 years until his oppression surrenders and the 23-year-old Jim Eisenreich, former outfielder for the Philadelphia Phillies baseball team, is told he has Tourette syndrome.

Tourette syndrome (TS) is a genetic, neurological disorder characterized by "tics," or repeated, involuntary, sudden movements or vocalizations. Patients describe the sensation of tics as irresistible outbursts that must be expressed, much like the urge to sneeze. Although a cause has not been established and a cure has not been found, TS is believed to stem from abnormal metabolism of dopamine and serotonin, neurotransmitters in the brain.

Although public awareness of the disorder remains deficient, recognition of TS during the 1960s in Jim's small Minnesota hometown proved even more limited. Believing that there must have been a reason for their son's repeated nose twitching, head jerking, and checking and double-checking to confirm closure of their kitchen cabinets, Jim's disconcerted parents took their 9-year-old son to a local hospital in search of solutions.

After a battery of tests, the diagnosis was hyperactivity. Diazepam (Valium) was prescribed, and Jim was told that he would "grow out of it." The drug controlled the symptoms somewhat; however, the side effects captured Jim's remaining normalcy. "I wasn't the kid I should have been," he said. "I always say I woke up six months later and decided I better not take [Valium]."

Once Jim stopped his Valium regimen, his symptoms resurfaced, and his parents, thinking the problem might be psychological, took Jim to a mental health center. He was found to be hyperactive but otherwise normal and, once again, the family was told Jim would grow out of it. And so, still living in a mystery, Jim resumed his childhood, wondering why he was different and whether he would be able to do the "normal" things that his parents and siblings could do.

As if adolescence is not awkward enough, one can only imagine how growing up with TS adds to the unease. Children, and even adults, often view TS behaviors as bizarre and frightening; overwhelmed by this strangeness, they target the patient with rejection and ridicule. For the most part, Jim's confidence in his athletic abilities along with a very supportive family overrode much distress associated with his behavior. "I was able to do well in school and have a social life; even though it was mainly baseball and sports-related, I did OK and I made it through," Jim said.

Acknowledging his shying away from dances and other school social activities, Jim says that "... because of TS, I didn't want to get close to the other stuff because I thought [my peers] would give me a hard time." "The good thing," he adds, "was that my parents and siblings did not treat me as anybody different. I was just a brother, a son, or a friend."

But Jim also suffered, and still does to a lesser extent, from the forces of attention deficit disorder (ADD), a neurological disorder commonly associated with TS, as are other problems including attention deficit disorder with hyperactivity (ADHD), obsessive-compulsive disorder (OCD), learning disabilities, difficulties with impulse control, and sleep disorders. Jim's deficit disorder made it difficult to concentrate in classes, listen to lectures and take timed tests because his inability to pay attention required reading and rereading test directions and questions.

Although children coping with TS possess the same intelligence quotient (IQ) range as the remaining population, their uniqueness does require special educational needs. This special assistance involves an understanding of the condition along with permission for these students to use tape recorders to tape lectures, to take untimed exams, and to leave the classroom if tics become overwhelming.

Despite his apparent survival through adolescence and fortunate support from loved ones, Jim found his symptoms, and the perplexity surrounding them, exasperating. As a rookie with the Minnesota Twins and 16 years after the first glimpse of his unusual behavior, Jim recognized that his athletic abilities could not eliminate the distress of his symptoms, even though baseball always had provided him relief in the past.

"When I became a rookie at 23 years old, I could no longer play the game comfortably, that's when it bothered me," he said. As a result, he visited a specialist in Minneapolis. The official diagnosis was TS.

"I had no idea what [the doctor] was talking about," Jim said, adding that it took him three more years to accept his diagnosis. "Then I started to realize: `Hey, there is a name for this, there are actually other people who have this!' So I thought `OK, this must be it,' " he explained. "That is when I believed I had it, and ever since I've been talking about it."