What Makes Me 'Tic'

A true story of a Canadian girl's battle with Tourette Syndrome

Written by Kianna Stickle

Imagine .... you're sitting in class, day dreaming. You know you should be -paying attention to the words of your teacher, but you just can't seem to comprehend them .The words feel so far away. The words, for some reason, you are just not able to grasp at the present time. You tell people you don't really know why you can't seem to keep full focus. But, you know that's a lie. You are fully aware of why you are having somuch trouble concentrating. You just cari't understand how to explain it. You know they won't understand, because to be honest, YOU don't even fully understand It. The jerking, the constant twitching, all the sudden movements you just can't seem to control. You try to hold back, and that's exactly why you're not able to focus. You try so hard to hold back your tics, that's the ONLY thing you're able to focus on. So, what's Wrong with you? Tourettes. So .... what is Tourettes, anyways? Tourettes, also known as "Tourette Syndrome" or simply "T.S." is a disorder that takes place in the central nervous system and is diagnosed when 3 or more "tics" are present. It's not a common disorder, but it's also not considered rare. Tourettes is a mysterious disorder, and there has been no cause or cure found. Because of this, there is no exact frequency ratio. But recent studies show that in Canada, an estimated 1 in' 100 people have Tourettes. So, I guess in that case, I would be that 'one'. I was diagnosed with Tourette Syndrome when I was in grade three; I was 8 years old. It was summertime, and my mom had been noticing some very unusual differences in the way I walked, 'spoke, and moved. She became worried, and scheduled an appointment to see my doctor. Once we sat down in his office, my mother explained the cause of her worry. She told the doctor about the strange, and sudden, movements that had come to her attention in the past few months. As she described my different "twitches", I could see my doctorcoming to a realization. His eyebrows rising and falling, his eyes widening and squinting. "Maybe I would get a diagnosis today and be done with all this", I thought to myself. Maybe I would get a prescription, and not have to put up with the constant eye blinking, the neck rolling, the shoulder shrugging, and the way my legs would uncontrollably collapse together as I was walking. Maybe, just maybe, I wouldn't have to deal with this mysterious pain. ' '

As my mom's description of my mysterious new problem came to a close, my doctor looked at us. There was a long pause, before he uttered those few words that would change my life. "It sounds like Tourettesto me", he said in a quiet voice. I looked at my mom, feeling confused. She looked back at me, the expression on her face a mixture between shocked, relieved and sympathetic. But the truth was, neither of us had a very good grasp on the concept of Tourettes. Like many people, we were very uneducated on the subject of tic disorders. As a result of our lack of knowledge, the doctor had to explain what we failed to understand ... Tourettes. The first thing he informed us of was what Tourettes actually was. He told us that it is a disorder that is diagnosed when 3 or more "tics" are present in the body. He went on to explain that these so-called "tics" are sudden and quick movements, or noises, that happen uncontrollably, and sometimes, constantly. He also stated that there are two kinds of tics: motor and phonic. Motor tics are physical, and an example of a motor tic may be blinking of the eyes, shrugging of the shoulders, or things along those lines. Phonic tics are vocal, and may be clearing of the throat, or even shouting out profane words. He next explained that, since we had become aware of my disability, we should work as a family to try as hard as possible to keepstress levels to a minimum, as tics may be aggravated by stress. By now, we basically understood the concept of Tourette Syndrome, but we still needed more information. That's when my mother asked the doctor about available medications. "There are 3 possible options if you feel that you need medication" , my doctor said. Since a medication designed specifically for T.S. is not yet present in the medical world, all 3 options of medication were for other purposes. For example, one of my options, "Clonidine", had a purpose very different than suppressing tics. Clonidine is actually a blood pressure medication. There were still two other choices. One was an anti-psychotic drug, and another was a neuroleptic drug. Now, we would have considered these, if it weren't for the horrid side effects that my doctor went on to explain. The anti-psychotic had a dreadful side effect of 'severe weight gain', which we're all aware, is not something that a young, selfconscious girl would appreciate. So, mother and I simply shared a glance at each other, and decided that this medication certainly would not do. So we asked about the neuroleptic. The neuroleptic had an equally gruesome side effect: "suicidal tendencies". Again, not something a cheery 8 year old needs to deal with. So, we ultimately decided to go without drugs, and attempt a 'natural' approach. The first thing we did after my shocking diagnosis was just 'waiting it out' . We went on normally for a few months, simply to watch and analyze, and to research and experinient with different methods.' My mom had found a book by author Elaine Shimberg entitled "Living With Tourette Syndrome" that gave her

some different ideas about how to treat Tourettes, how to deal with it, and different diets we could try. We tried some different food choices, for example, cutting out some of the sugar from my everyday diet, and getting rid of caffeine. This helped a little bit, but we weren't seeing any extreme results. The only thing that seemed to completely calm me down was my love of art. I had been painting and drawing since I was about 3 years old, and I also enjoyed singing and dancing. I found that when I was focused on one of these things, I didn't tic at all. But, my mom still wanted me to try some kind of medication. So, we went to our local health food store, and the man working there recommended a natural medication that they had there, called "Bright Kids". These were pills to help children concentrate, which I definitely needed. I tried the Bright Kids formulation for a while, and this time, we were actually seeing results. I was in grade 4 at this point, and my tics were gradually decreasing as time passed. By the time I was in grade 5, I only was showing 1 ticthe eye blinking that starting this whole thing. But, I was used to blinking my eyes constantly, since I had been doing it since the end of grade 2. Eye blinking had become the normal thing for me. Also, I developed a small tic, that was a kind of grunting noise, in my throat. It was a soft noise, so not many noticed it. And, it didn't really bother me. So, I sailed through grades 5 and 6 ' with barely any signs that I even had Tourettes. By that time, I had been off of Bright Kids for a while, since I didn't really need it anymore. My tics seemed to be diminishing, and I was quite pleased of this. Then, I went from grade 6 to 7. After 3 years of barely having any tics at all, they came back. They weren't unbearably bad, but it was sure a difference from how I had been in the past few years. My arms and hands would occasionally jerk, and twist about, like snakes. This didn't happen very often, only when I was under a great deal of stress. Also, my eye blinking tic got worse. I wouldn't just blink my eyes, but as my eyes would close, I would squeeze them shut, over and over again, until my eyes hurt ..This was the first time I had experienced a painful tic. But, it wasn't that horrible, I still did my schoolwork, and I could still concentrate. Kids still didn't notice my tics, other than people who knew about my condition, which was only a few of my closest friends. I was very relieved about this, as I was quite self conscious about my tics, and it made me nervous when people would notice them. But, since my tics weren't horribly bad, and nobody really seemed to notice, I guess you could articulate that grade 7 was a breeze. I had friends that loved me, and understood me, I had good teachers (none of which were even aware of my disorder), and, as always, Iwas excelling in my school work, with good grades in all subjects. I enjoyed school, and even though I would periodically arrive at school with incomplete homework, usually due to having a rough night battling with my own mind, I would still try my

best in school. I was having a pretty easy time with everything. And that, my readers, is when it happened.
It was summertime, once again, and I had done exceptionally well in grade 7.

I was looking forward to 8th grade, the last grade of elementary school. My friends and I would rule the school. We would finally be oldest. We would be in charge. No more snobby grades ahead of us telling us what to do. I was feeling great. But, right before the school year began, during the month of August, something in my brain .... clicked. Suddenly, it was as if an explosion went off in my head. I was developing tic after tic, and it was confusing me. I didn't know what was happening, and thought something must be seriously wrong with me. My mother and I talked about it, and her comforting voice reassured me, and told me it was just my nerves. Either I was nervous about starting grade 8, or I was just going through a phase. She reminded me what my doctor had said almost 5 years prior- that my tics will 'wax and wane'. What this means is that at different stages of my life, my . tics may become less, or they may worsen. So, I was calmed down by those words, just enough to get through my firstmonth of grade 8. I started 8th grade in September of2010, and I was already enjoying myself. I was put in a different class than my best friend of 5 years, Kristie Arseneault, but we would still see each other during the day, so we weren't too worried about being in a different class. And on the first day of school, I met a new friend- Kd Waito. She at first didn't talk much, and, quite frankly, kind of scared me. She walked into the classroom with her hair covering her face, with her eyes fixed downwards, towards the floor. My 'teacher told her to take the empty seat beside me, and after a few weeks, we were chatting regularly. We would walk around together, eat lunch together, and soon enough, we were the best of friends. After a while, I told her that I had Tourette Syndrome, and I explained it to her. She told me that she was glad I told her, because she had noticed me 'twitching' and wasn't completely sure what was wrong with me. We both laughed. Grade 8 was starting out to be pretty awesome. I had already met new friends, including Kd, and also Kiana, the daughter of one of my mom's good friends. My tics weren't as bad as they had been a month ago. And another good thing that occurred was that I auditioned, and got in to the Glee Club. This was great, since like I mentioned earlier, I absolutely adore singing, and it calms me down. Grade 8 started out with a bang, and I was ecstaticl! But we all know, nothing can be perfect. Just when I thought life couldn't get any better .... it got worse. Much. much worse. I thought my life was perfect. I thought absolutely nothing could go wrong. And then my tics came back, once again. I thought that the weird, sudden 'phase' back during the summer would go away. And it did go away, but it unfortunately

came back just 2 months later. I had developed about 4 or 5 new tics, and counting. I had started constantly and rapidly shrugging my shoulders, clearing my throat, making a grunting kind of sound, and rolling my eyes right back into my skull. Also, the blinking of my eyes that seemed almost perpetual had worsened. My Tourettes had come back at full force, and it wasn't showing any signs of slowing any time soon. It was at the point where at the end of the school day, my body would be aching, and I could barely see straight Mom had recently started me on another natural medication from the health food store, called 'Efalex', and it was helping a little bit. But my mother had become scared for my health, and we agreed that we should maybe try something stronger. So, she once again called up my doctor and scheduled an appointment. So, there we sat, in my doctor's office. My mother had to work that day, so my father took me instead. My father and I are very close, but it seems as though he still doesn't fully understand my disorder. Because of this, I had to explain to my doctor what was happening. I told him about my new tics, and explained how painful they were. Once again, like he had done so long ago, he listed my options for medication. It was still the same 3 options- Clonidine, the blood pressure medication. Haldol, the anti-psychotic drug that causes severe weight gain. Or the neuroleptic drug that causes depression and suicidal thoughts. He recommended that we try Clonidine,and he wrote us a prescription to take to the drug store. My dad dropped me back off at school to fmish the day, and he went off to get my meds. When I got home from school, there was a little white paper bag on the kitchen counter, that I guessed was from the drug store. I opened it up and sure enough, found a little blue pill bottle labeled Clonidine. I picked it up and read the directions. It said that I was to take 1 half of a tablet beforebed each night, and so that's exactly what I did. For a few weeks, I tried out the Clonidine, and, surprise surprise, it didn't do too much for me. In fact, it actually made my tics a bit worse. In result, I simply stopped taking these pills. I refused to take them any more. Not only did they make my tics worse, but they made me feel drowsy, and sick. My mom has tried a number of times to make me take them again, and to "just give them a chance", but I simply will not take them. Now, this brings us to present time. I'm back on Efalex,and I'm not feeling the best, but I'm also not feeling horribly bad. I've developed some new tics, and some of my other tics, like the throat clearing and the shoulder shrugging, have come to a halt. I now have different tics then I did a few months ago, like my neck rolling tic, my head shaking, my teeth-chattering, and the way I tense my shoulders and extend my jaw out so that it's pointed towards the sky. My eye blinking persists, and occasionally worsens, but like I said before, I'm pretty much used to that. I have started using my electronic devices less, because my mother said I seem

worse when I've been hunched over the computer for a while, or when I've been rapidly typing into my Blackberry for hours. My dear mom encourages me to relax more and worry less. Every now and then, she lets me take the day off of school, and spends a 'mental health' day with me, just so that I can calm myself down enough to actually focus on something. I've started to takepiarto lessons, which we have found also calms my nerves. I practice, and practice, and after a while, I forget 'about everything, and just get lost in the music. It reminds me of when I'm drawing, or sketching, or painting (which I've started doing much more often). Just the way the world around me starts to fade away, and it feels as though I go right into the canvas, swirling and twisting with the vibrant colours of my paint. I'm learning new methods every day on how to conquer this madness, and how to live a normal life among all the other people in the world. But when it comes down to it, if I have friends and family who love me, which I certainly do.T can conquer anything. As .long as'1 believe in myself, and persevere and keep my strength, I can win any battle. Including my battle with Tourette Syndrome.