David E. Kelley's hit program: Tourette awareness
By John Morgan, Spotlight Health
With medical adviser Stephen A. Shoop, M.D.
There is arguably no one better at writing hit TV shows than David E. Kelley, creator of Ally McBeal, The Practice, Boston Public, Chicago Hope and Picket Fences. At 44, the soft-spoken Kelley is TV's golden boy and an Emmy-winning force of nature. Kelley recently was honored again but this time, instead of picking up an Emmy for one of his hit programs, he was celebrated for a program of awareness. On the night before Valentine's Day, Hollywood continued its love affair with Kelley by honoring him at the 4th annual Tourette Syndrome Association (TSA) Awards Dinner. In attendance were such luminaries as Calista Flockhart, Jane Krakowski, Jason Kravatz, Christine Lahti, Mike Farrell, and the event's emcee, Sally Kellerman.
"I've been fascinated with Tourette since I read a book on it by Oliver Sacks. He was linking it to that mind-body connection that no one has been able to quantify," shares Kelley. "As a consequence, the more I read up on it the more fascinated, if not confounded, I became with the syndrome."
Some might even say obsessed.
In nearly every show he has produced, Kelley has written episodes dealing with TS, a perplexing neurological disorder characterized by repetitive motor and/or vocal tics. Motor tics involve rapid, involuntary movements like eye blinking, head jerking and facial grimacing. Vocal tics can encompass throat clearing, grunting and barking sounds.
There is no cure for TS, and researchers have yet to discover its cause. The disorder typically emerges between 5 and 18 years of age. Studies indicate that TS is inherited as a dominant gene, with about a 50% risk per pregnancy of passing on the trait. Boys appear at least three times more likely than girls to exhibit TS symptoms.
Inheritance of the gene does not guarantee a person will get TS. Environmental "triggers," such as infection, may determine whether a person manifests TS.
Over 100,000 Americans suffer with the illness. But according to experts, the rate of diagnosis is increasing, perhaps in part due to the awareness generated by popular shows like Kelley's.
"There is no question that David Kelley has helped us educate people we couldn't reach," applauds Judit Ungar, executive director of TSA. "Every time David has a show on involving TS, we get even more calls requesting information. These shows actually help people get diagnosed, and we're grateful, because that is when we can really begin to help."
"No one in prime time has done more to help increase the awareness of Tourette Syndrome than David," says Jeffrey Kramer, co-founder of the TSA event and Kelley's former partner. "I'm thrilled to honor a man who is so passionate about everything he does. He's a great writer, a humanitarian and he's funny."
But there's a fine line between comedy and tragedy that the TSA knows all too well. While entertainment shows like Kelley's Chicago Hope or the WB's 7th Heaven are shining examples of realistic Tourette portrayals, Hollywood has also been guilty of tarnishing TS and exploiting the disorder for cheap laughs.
Kelley is extremely sensitive to concerns his shows might further stereotype people with TS since most do not exhibit the more sensational symptoms depicted by the characters he creates.
"You probably know someone with TS but don't know they have the syndrome because their tics are very subtle," explains Kelley, who is married to actress Michelle Pfeiffer. "When we do something for television, we don't have the luxury of being that subtle. We want the audience to know the character has Tourette. I wouldn't say we exaggerate the syndrome, but we certainly pick tics that are more exaggerated."
Actress Anne Heche, for whom Kelley created a Tourette character on Ally McBeal, is equally aware of her immense responsibilities.
"I was so nervous. I have never worked so hard in my life on a part because I wanted to honor the people living with Tourette," shares Heche, whose character Melanie West will appear in two more episodes. "Being a comedy, there is such a delicate balance that needs to be respected."
The response to her role from the Tourette community has been largely positive.
"It was a very good physical portrayal. My biggest concern is that her character did not show much remorse for having accidentally killed a man," says Dr. Donald J. Cohen, director at the Yale Child Study Center. "If anything, people with Tourette are overly sensitive and feel terrible for simply making noises or disturbing people."
Cohen also worries that people might interpret the circumstances of the accident to indicate that people with TS are somehow dangerous.
"Tourette does not make a person dangerous," states Cohen, who was awarded by the TSA for his pioneering work. "A child with this disorder can easily become your child's best friend."
And friendship and family may be the best medicine for children with TS.
That's because the majority of people with TS do not need medications to control their tics. According to Cohen, people can be helped without taking drugs and emphasizes that a person's capacity to better cope with TS is often associated with the following:
Growing up in a loving and supportive family
Enjoying a lively sense of humor
Possessing a capacity for friendship
Enjoying special artistic, intellectual and athletic talents
Behavioral therapies such as habit reversal and awareness training are other non-pharmacological treatments that have helped many people in controlling tics and treating TS.
Some individuals' tics are so severe that medications are beneficial. Even then, Cohen typically waits a few months to make certain the tics are actually interfering with the child's life.
Cohen discovered the first choice therapy for TS Clonidine, a drug previously used to treat hypertension. While effective for tic suppression, Clonidine does have sedative side effects.
A new drug, Baclofen used for muscular spasticity appears to work moderately well and enjoys an excellent safety record with well-tolerated side effects, says Dr. James T. McCracken, director of the Division of Child and Adolescent Psychiatry at the UCLA Neuropsychiatric Institute.
Many kids with TS also have co-morbidities, such as obsessive-compulsive disorder (OCD), attention deficit with or without hyperactivity (ADD/ADHD) and learning disabilities.
"We are getting increasingly better at treating OCD," says Cohen. "This is important because OCD typically appears years after the onset of tics and can be the most persistent and debilitating condition associated with Tourette."
Typical treatment for this OCD component is often SSRIs like Zoloft or Prozac.
A new study using a combination therapy of Ritalin and Clonidine is showing positive results in treating these "complicated" kids with TS, OCD and ADHD.
"The majority of patients on this combination therapy are showing good to excellent results in both tic suppression and ADHD symptoms," reports McCracken.
Both Cohen and McCracken are upbeat about the future of TS research and treatment.
"I really feel we will cure Tourette in our lifetime," predicts Cohen. "In the meantime, while we can't change a child's genes or their constitution, we can do a lot to support his or her strengths."
Kelley received plenty of support from the crowd gathered to honor his body of work with Tourette. In true Kelley fashion, he joked that he felt awkward accepting the award.
"When Jeffrey called me about the award I asked him, 'You think I'm really worthy?' and he said, 'No, but people will come. We really have two awards. One for Dr. Cohen and then there's one for people like you.'"
With people like Kelley on your side, who needs friends?