Living with Tourette Syndrome: One young man shares his story

Tourette syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. The early symptoms of TS are typically noticed first in childhood, with the average onset between the ages of 3 and 9 years. TS occurs in people from all ethnic groups; males are affected about three to four times more often than females. It is estimated that 200,000 Americans have the most severe form of TS, and as many as one in 100 exhibit milder and less complex symptoms such as chronic motor or vocal tics. Although TS can be a chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst tic symptoms in their early teens, with improvement occurring in the late teens and continuing into adulthood. Most of the members of Ryan Province's family knew little if anything about TS, until he was diagnosed with the disorder the summer before entering the 7th grade. That is when a name was finally given to what Ryan and his parents knew was behavior he could not control. Ryan, a 2005 graduate of Anselmo-Merna High School, says his earliest memories of actually beginning to display characteristics associated with TS began in 4th grade. He began to shake his head a lot, and his parents and grandparents thought it was because he needed a haircut. So they cut his hair, but that didn't stop the shaking. He recalls having to stay in for recess quite often during that grade for what his teachers thought was disruptive behavior in class. They later learned it was behavior beyond his control. Junior high was rough years, when Ryan says his TS was at its worst. He was placed on medication to control the tics, but he says it made him drowsy and he really didn't like taking it. By the time he was a sophomore in high school, he had become very good at being able to control his tics himself. Ryan says his mom has done lots of research on the disorder, which in turn has helped provide him with tools for dealing with TS in a positive way. "I got to where I could tell if a tic was coming on, so I would find something to completely focus my mind on. Some times I would go to the gym and grab a basketball and shoot hoops - just anything to focus on," Ryan explains. He says he considers himself extremely lucky that his TS is mild enough that he can suppress the tics himself without having to rely on medication. He also considers himself fortunate to have had so much support after he was diagnosed. "My coaches really helped me a lot. I was the quarterback of the football team, and before each game they would go talk to the refs and tell them about me, just in case I would start shaking, so we wouldn't get a penalty. They made sure the refs knew I would probably be moving! The entire staff was great really, but especially the coaches. That's who I spent the most time with." Ryan says he also received lots of support from his peers. He recalls one particular incident during a home basketball game, when two out-of-town students who weren't even from the school A/M was playing, began heckling him. "When I was warming up before the start of the game, I could see them sitting down in front and could tell they were making fun of me. I just ignored them, but kind of kept my eye on them throughout the game. It was actually one of my best games! I remember the game was nearly over, and the two got up and left. When they did, the entire A/M student body got up from the bleachers and followed them out - just to make sure they left. That made me feel really good." As he has gotten a little older, his tics have become more infrequent. Ryan says if he finds himself in a stressful situation or around people he doesn't know, the tics are more apt to appear. While he has occasionally experienced vocal tics, the most common for Ryan are shaking his head, rapid blinking of his eyes, and blowing air through his nose which he describes as a sound similar to a snicker. As with any syndrome, there are varying degrees of Tourette ranging from very mild to very severe. "I feel very fortunate that I can suppress it," says Ryan. "I know there are a lot of people who can't and I feel sorry for them." Ryan has always been determined not to let TS interfere with his life or limit him in any way. He attends UNL and is studying business education, with plans to obtain coaching endorsements in football, basketball - and maybe track. He is currently in his junior year of college, as he took some time off to work with his dad, Justin. He also comes home during the summer and school breaks to help out in the family business. He says it was important to him to be able to take control of his disorder and not rely on medicine or anything else. "I finally got to a point where I stopped making excuses - and I'm a lot happier because of it!" "There are some struggles, but it's not the end of the world. What helped me the most was finding something I enjoyed doing - like sports - to focus all my energy on." When asked what advice he might give another young person with TS, Ryan paused for a moment, then answered; "Just don't let it hold you back or stop you from doing what you want to do." Pretty mature advice from a 25-year-old.