Featured Patient Story
Band of Artists Dances, Tics and Barks to Beat of a Different Drummer
Giving Voice to the Movement, Music, Beauty and Science of Tourette's Syndrome.
Sutie Madison, 32, moves a lot. As an artist, director and choreographer, it's part of her work. As a woman living with Tourette's syndrome, it's part of her life.
Sutie first became aware of her constant twitches, tics and vocalizations at age eight, although she wasn’t diagnosed with Tourette’s syndrome (TS) until she was 13. TS is an inherited neurological disorder characterized by repetitive, involuntary movements and vocalizations. “There is a very complex genetic basis for Tourette’s,” explains Sutie’s Abington Memorial Hospital Neurologist, James Cook, MD. Experts suspect the disorder is caused by abnormalities in certain areas of the brain, the circuits that connect them, and the neurotransmitters (brain chemicals) that transmit messages among brain cells.
Tourette’s syndrome is much more common than most people realize. Studies show that nearly 1 percent of the population exhibits Tourette’s in some form, with the prevalence being higher in school-age children and lower in adults. The syndrome’s onset occurs most commonly between the ages of seven and 15. In many children, tics disappear during adolescence. But in nearly one-third of those with Tourette’s, tics continue throughout adulthood.
A diagnosis of Tourette’s is based on the expression of a vocal tic and multiple motor tics. Simple motor tics associated with TS may include eye blinking, shoulder shrugging, slapping or head-tossing. Complex motor tics include patterns of movement, such as a head toss combined with a jump or twist. Tics can be dangerous, too. Some are self-injuring, such as hitting oneself. “Nobody has identical tics,” says Dr. Cook. “The tics can wax and wane, sometimes going away for periods of time. They can also change in nature over time.”
Many with Tourette’s simultaneously experience other neurological disorders such as attention deficit disorder and obsessive compulsive disorder (OCD). Few people understand the intense psychological component of TS. Sutie describes her tics as moderate, but burdensome. “They are all-consuming and can be painful, physically taxing and exhausting,” she says.
To explain the connection between Tourette’s and OCD, Sutie says that while she can sometimes suppress a tic, it is impossible to suppress the urge to tic. “I start to feel like I’m going to jump out of my skin if I don’t tic,” she says. “My brain is constantly commanding my body to move or tic. In a way, these movements are a physical manifestation of my compulsive nature.”
Treatment for TS may include medication such as minor and major tranquilizers, among others, but many of these drugs cause drowsiness or sedation. Cognitive-behavioral therapy may also be helpful. For example, the patient is encouraged to counter the urge to tic by engaging in another activity. “Treatment must be tailored to the individual,” stresses Dr. Cook.
Turning Tourette’s into Art
Sutie began experimenting artistically with her tics after graduating from Arcadia University, where she studied painting. Arcadia associate professor Alan Powell, a renowned visual artist, encouraged Sutie to use her tics in developing video performance pieces. “During this time, I realized that my tics serve me as a personal language system,” she says. “Because they are kinetic in nature, they become a kind of dance.”
Awakening to her inherent gifts motivated the Ambler resident to educate others about Tourette’s syndrome and promote tolerance. In 2011, Sutie founded Band of Artists (BOA) – a group of educators, performers, presenters and scientists who strive to create awareness about neurological disorders. BOA’s productions include performing arts elements such as modern dance and live music, as well as a scientific component.
As director and choreographer, Sutie uses physical and vocal tics, both her own as well as others’, as a foundation for choreography. The scientific part of the show features a lecture by Dr. Cook, followed by an open discussion with the audience. Dr. Cook also serves on the organization’s board.
Sutie is proud of her team members and passionate about their mission. “Ultimately my goal is to draw from others through developing, collaborating and directing different media pieces, scientific lectures and performing arts events,” she says. “Each will highlight both social and self awareness in the lives of people who have the courage to embrace their challenges by finding a unique way of expressing them.”
For more information about Tourette’s syndrome and Band of Artists, or to get involved, visit www.bandofartists.org.