Nick van Bloss said the constant ticking and pain from his Tourette Syndrome (TS) prevents him from sleeping more than two or three hours a night.
Conversely, Jason Duika said getting a good night’s sleep is crucial to his managing the involuntary movements and “goofy” thoughts brought on by his TS. He also benefits from getting regular exercise and eating a healthy diet, while van Bloss said physical activity and food choice don’t influence his symptoms.
“That speaks to how complicated Tourette’s is,” said Christopher Pittenger, MD, PhD, associate professor of psychiatry at Yale. “Unfortunately it’s a long road to find the thing that makes a difference” in treating symptoms.
Van Bloss, a pianist, and Duika, a baritone opera singer, spoke about their personal struggles with TS at a morning-long seminar February 26 at Yale’s Davenport College.
The title of the gathering was “Music Meets Medicine: Tourette Syndrome,” and it was co-sponsored by Yale and the New Haven Symphony Orchestra.
Pittenger and Robert A. King, MD, professor in the Yale Child Study Center, spoke about the science of TS, a neurological disorder characterized by repetitive, involuntary movements and sounds called tics.
TS is most frequently diagnosed in young children, and often symptoms subside or even disappear by mid-adolescence.
King said sufferers become preoccupied with suppressing their movements. He likened it to a person having to cough at a concert, and solely focusing on that urge while not being able to enjoy the music.
Researchers haven’t determined what causes TS, although it is probably genetic in about 50 percent of the cases, Pittenger said.
“If we could understand the causes, we could predict. We could give parents information,” he said. “By understanding the cause hopefully we can improve the treatment.”
Van Bloss was 21 when he was diagnosed, although he began having ticks in his head, neck, and eyes when he was 7.
Like Duika, he was bullied by his peers, and had to learn how to manage his movements out of self-preservation. To this day, he is able to redirect his ticks to his thighs and toes.
“Out of necessity I’ve had to move them there because then people who look at me won’t say I’m a freak,” he said. “Not a moment of my life goes by, not a second, when I’m not aware of something in my body hurting.”
Van Bloss played piano professionally until he was 26, then stopped for 15 years. He chronicled his struggles in his autobiography, “Busy Body: My Life with Tourette’s Syndrome,” then began playing piano again seven years ago. Moving his fingers over the keys helps his mind channel his body’s energy, he said.
“As soon as I sit at the piano the symptoms tend to subside,” he said, adding that he prefers playing for larger audiences rather than in intimate settings.
Duika, a high school teacher in Indiana who is now performing with the Palm Beach Opera in Florida, said he thrives on speaking in public and performing.
Like van Bloss, he suffered from cruel treatment by his classmates beginning when he was diagnosed at age 6. His mother, who put her career on hold for 12 years to care for him, once counted that her son had 1,200 ticks on a 2 ½ hour flight from Michigan to Florida.
“It was a sport for my peers to make fun of me,” Duika said. “I was hospitalized once because I was beaten so badly.”
Today, the ticks are mostly gone. Duika said he stopped exhibiting physical symptoms when he turned 19, although he still often has trouble controlling what he calls “goofy” thoughts, which he attributes to his having TS.
He credits his spirituality, his commitment to eating well and exercising, and his focus on his singing with helping him manage his symptoms.
“You have to keep trying,” he said. “You never know what might begin the journey to arrest it.”