Living with Tourette Syndrome

Eye blinking, squeaking noises, head jerking, shoulder shrugging, humming, the list goes on. They mysteriously come and go; some days they are bad, other days not so bad. People asking “why are you doing that?” or “stop doing that!” Pediatrician, eye doctor, allergist, neurologist, EEG, and MRI appointments including hour long car rides each way to All Children’s Hospital in St. Pete for habit reversal therapy. This somewhat describes what life was like growing up with TS and I know most kids would agree their lives are probably similar. But can most kids think back to something positive that happened while traveling down the long road of living with TS?

When I was in 5th grade, my tics were at their worst and one tic that was present that year was head shaking. There was a boy in my class who hadn’t been In my class in previous years of elementary school so I didn’t know him very well. One day I noticed he was shaking his head like I did, but I didn’t think anything about it. Not long after that, we were at our school’s “skate night” at the local roller rink and some kids in my class had all made a long chain, holding on to each while skating and there was Patrick (Patty) and I skating and shaking our heads. My mom saw us and wondered if it could be possible that Patty had tics like me. She contacted his mom who told us that Patty was currently being tested for PANDAS which is similar to TS. She also told us that Dr. Murphy, a pediatric neuropsychiatrist in St. Pete was who we needed to see. Going to see her is what finally gave me the official TS diagnosis and led to attending habit reversal therapy. I bet there aren’t many kids with this condition that can say they have had a classmate that had it too. Patty ended up moving to California that summer, but for one year, I wasn’t alone!

The other positive thing I choose to focus on is that my TS is mild. At my first appointment with Dr. Murphy, she observed me for a long time while her intern asked me a lot of questions. At the end of the session, she told me that I am very fortunate compared to many of her patients who have such severe cases that they can’t even go to school. Because my tics are mild, I’ve never taken medicine and I’ve never had a 504 plan at school even though I could have had one.

Has it been tough dealing with TS? Has it been inconvenient? You bet is has, but I prefer to focus on the positive things that happened while dealing with TS. It’s definitely been a challenge to live with, but it will never define me or get me down.

I have TS but it doesn’t have me.