What It Really Feels Like to Have Tourette Syndrome

Oksana-Mizina/ShutterstockEver try to stop a sneeze? You feel it coming on, you want to hold it back, but the urge is just too powerful; in fact, it’s involuntary. That’s what it’s like for people who have Tourette syndrome (TS), a neurological disorder characterized by involuntary behaviors. But with TS, it’s not a sneeze that the sufferer can’t prevent, but a grimace or a grunt, or worse, a flailing of limbs or the shouting of obscenities. First diagnosed in 1885 in an 86-year old French woman, TS is three times more common in males than in females, and its symptoms are most likely to present before the age of ten and most severely during adolescence and young adulthood. The U.S. Centers for Disease Control and Prevention reports that approximately 138,000 children in the United States have been diagnosed with TS, although twice as many may remain undiagnosed. Although the majority of TS cases aren’t severe, and only 10 to 15 percent involve coprolalia – outbursts of swear words, ethnic slurs, and other socially unacceptable words and phrases, some are so severe that it becomes impossible for the sufferer to lead a normal life. That’s how it was with Andrew Joannou, age 49, for most of his life.

Joannou’s tics began when he was six-years old and included violent body movements, loud and squeaky noises, and cursing. His parents and teachers chalked it up to “bad behavior” and at age 11, sent him to boarding school, where specialists tried to determine what was wrong for a full two years before finally diagnosing him with TS at age 13. Joannou was treated with heavy doses of medication that kept him asleep most of the time, causing him to fail his classes. When he wasn’t medicated, his tics grew increasingly frequent and severe. He often threw out his own neck, requiring physical therapy. He couldn’t take public transportation because he would get beaten up by other passengers and taunted by the staff in response to his tics.

Throughout his 20s, Joannou found relief through sports, and in particular, cycling, swimming, and martial arts. When he was engaged in any of those activities, his tics were silenced entirely. Accordingly, that’s how he spent virtually all of his waking hours, logging as many as 100 miles a day on his bicycle and four miles per day in the pool. The only time he interacted with people was during karate classes and when he went to church. Over the course of this time and into his 30s and 40s, Joannou continued to try different medications, but the ones that didn’t cause him to sleep caused life-threatening side-effects, including suicidal thoughts.

Then in the summer of 2013, Joannou underwent a novel and still-experimental therapy for Tourette’s known as “Deep Brain Stimulation” (or “DBS”) to manage his severe Tourette Syndrome symptoms. DBS is a surgical technique that’s been FDA-approved for treating Parkinson’s Disease and has shown promise for the treatment of Alzheimer’s through the placement of electrodes in the region of the brain that is found to be functioning abnormally. In Tourettes patients, two electrodes are placed in the thalamic region of the brain and connected to a device by which electrical impulses can be emitted. Adjustments are made to the electrical impulses during follow-up visits to find the best combination of settings that control the symptoms. For Joannou, this involved one surgery for each electrode, another surgery to place two impulse-emitting devices, another surgery to replace one of those devices when it became faulty, and more than a year of adjustments, including an adjustment for a personality change caused by the DBS.

However, it was worth it. As a result of the surgery, Joannou has seen a 90 percent reduction in his tics. “Everyone at work can tell the difference,” he notes. “And before the surgery, I suffered a great deal of pain throughout my body because of my tics. Since surgery, I have a body without pain.” Joannou’s wife, Amy, is thrilled that she and her husband can now walk down the street together holding hands. “It used to be that I would have to support his body as we walked so that he wouldn’t fall down from the force of a tic.” But, as Joannou says, “Amy has always been able to see past my tics.”