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Long IslandLI Life

Dylan Brady's essay, "Memory Piece"

Dylan Brady, 14, who was diagnosed with Tourette syndrome in August, is now a Tourette's ambassador and speaks at schools to dispel myths about his condition. He recently sang and played percussion at the Long Island Tourette Syndrome Association's annual fundraiser. Videojournalists: Ed Betz and Chris Ware (June 15, 2013)

Dylan Brady wrote this essay, "Memory Piece," for an English class assignment and also included it in his application to be a Youth Ambassador for the national Tourette Syndrome Association.

Completely relaxed, nothing on my mind but the math question. Suddenly I move. I move and move again. I cannot concentrate; the tics change the topic in my brain to them. All the movements and all the tics that make me move back and forth take a toll on my body. They started as far back as I can remember; there was always something I would do: if it was tapping my fingers together, making clicks in my throat, blinking, winking, sniffing, flexing my abdomen or stretching my back. The obnoxious taunting of my tics drives me crazy. I can never concentrate, the tics are too distracting. I couldn't take the pain of the movement anymore. Something had to be done.

All the tics are extremely annoying, but there is one that affects me the most. Flexing my abdomen every five seconds nonstop gives me terrible stomachaches. This is the tic that put me over the edge, and made me tell my parents that I need to get help from a doctor. After I told my parents that I needed help, my dad suggested that I go to acupuncture to calm my body down. I first said that there was no way I would go, but as the tics became more relentless, I decided to give it a try.

After my first visit the tics lessened greatly, but a few days later they came back even worse. I went a few more times and there was no difference, so we went to a pediatric neurologist to get an examination on why these tics were happening. The doctor told us that I have Tourette's syndrome. After 13 years of never knowing what was happening to me, we had an answer. The doctor suggested I take medicine, but I did not know if I wanted to try that until a couple more sessions of acupuncture. I did not want to put unneeded substances into my body that I could avoid with acupuncture. After a few more sessions of acupuncture, I decided the best thing for me would be to start medicine.

Tourette's syndrome is an inherited disorder in which people acquire frequent tics. The tics are motor and/or vocal. People have varying complexity of their tics. Simple tics involve one muscle or a very small movement, and complex tics involve several muscle groups. I have motor tics that are both simple and complex. Blinking, winking, tapping my fingers and sniffing are all simple tics. Flexing my abdomen and stretching my back are both complex tics. I also have one vocal tic, which is making a click in the back of my throat. Tics do not completely go away during sleep, but there is a considerable reduction in the amount of them.

There are other behaviors that coincide with Tourette's syndrome, a couple which I have: anxiety and perfectionism. A sensation or urge causes the tic; once the tic is performed the sensation goes away until the urge comes back, but the period of time between sensations varies for everyone. Some people who have Tourette's syndrome have the need to perform the tic a certain amount of times or in a specific way, to fulfill the need, or sensation, similar to obsessive-compulsive disorder. I have this need, but it is not every time I do the tic.

I have now been taking my medicine for about a month. I have noticed my blinking and winking getting better, but my abdomen flex and back stretch are still constant. I am trying to get a better understanding of what Tourette's is in order to know what is happening to my body. Both the memory of my childhood tics and the development of my tics are a part of me. While I have to deal with these tics I am still an active member in North Shore High School and other activities I have a passion for. I am proud to recognize that I have Tourette's syndrome and still be an avid student, athlete and musician.

I have talked about where I have come and where I am today. I don't know what will happen in my future, but I have some definite ideas and some concerns. I will continue to be an excellent student. I will continue to push myself to my athletic best. I will continue to deliver great performances with my band. My concern is that my teachers know when I have an involuntary twitch in class that I am not being disruptive, I just can't control it.

I will always pursue my passions in life and continue to do my best. Tourette's will not stop me. I just hope someday my tics will slow down or go away so I can live a tic-free minute. I have Tourette's, Tourette's doesn't have me.

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