How was I diagnosed with Tourette's Syndrome?

      At the age of fifteen, I had an intense knee surgery, shortly after my family noticed that I was doing this weird shiver thing all of the time.  It started to worry my mom, so we started to research it.  The first test we did was a seizure test.  I was sleep deprived for 24 hours, then they put all of the EEG wires on my and put a strobe light in my face for five minutes, and lastly I was required to sleep while they watched me and my brain waves.  This test showed nothing.  

     Next went to Primary Children’s to start working with a neurologist.  I had to stay in the hospital for three days with all of the EEG wires on my head.  The results showed no brain activity during the tics.  This proved that it was not a seizure, but just twitching.  Therefore, I was diagnosed as CTD, Complex tic disorder because my tics used multiple muscle groups.  

     Once an official diagnosis had been made, my neurologist started me on the medication Clonidine.  The basic concept of the medication is to make your body to tired to sleep.  But even on a low dose, I was too tired to even walk a few steps.  I have multiple scars on my back because if I tried to walk to far (like from the couch to the kitchen) I would pass out, occasionally falling on things or hitting something.  I hated this because my mild twitches were gone, but there was no quality of life.  So I quit my medication cold turkey.  This caused me to develop two more tics.  I tried medication after medication and they did help my tics, but the side effects (weight gain, weight loss, nausea, passing out, lethargic, dizziness, nervousness, agitation and headaches) were not worth it.  

     Eventually, I quit all medications, but then I developed three more tics.  Now, five years later, I have six tics.  Occasionally they will change but I usually keep six tics with a medium intensity.  

Tim Howard: Growing up with Tourette Syndrome and my love of Soccer

Today Tim Howard released a section from his book about his life with Tourette’s.  In it he says,

“Next came the tics.  Each started the same way: with an uncomfortable sensation in some part of my body- a heightened awareness, an urge.  The feeling could be relieved only by some specific motor action.  I started blinking, for example – forceful, deliberated blinks that I couldn’t stop.  I began to clear my throat over and over.  Then there were facial jerks.  Shoulder shrugs.  Eye rolling.  With each of them it was the same pattern: that awful sensation welling up, the one that could only be relieved, inexplicably, by some action.  As soon as I did it, I felt normal again. Seconds later, the cycle would repeat. Terrible sensation. Buildup of stress. Action. Relief. In school, teachers snapped at me – sit still. Stop clearing your throat. Other kids laughed. What’s going on with your face? At home, mom stayed quiet, but I could feel her watching. I saw how her eyes zeroed-in on whatever part of my body I’d moved, the flicker of concern that passed over her face. I hated that I couldn’t knock it off, be a little easier on a woman who deserved some peace of mind. But, of course, that was impossible.”

I think this is a fantastic way to describe what Tourette’s feel like and how it makes you feel.  Tics are something that I, and anyone else with the disease, can’t control.  As a child you feel guilty and embarrassed of you tics.  Like Tim states, you want to stop, but there is nothing you can do. 

Tim continues on to talk about when he first met with a neurologist, he says, “So now we had a name for my urges, but not much else. There was no reliable treatment or cure. Some children did extremely well on medication; others moved from cocktail to cocktail, each one causing different side effects to little avail. But the doctor explained some other things, too – curious things. He said that he had seen some examples of people with these disorders having some special gifts – an ability to hyper-focus, to stick with a task until it’s 100% mastered. He had also seen a kind of hyper-sensitivity – an ability to see and feel and smell things that others couldn’t.

As we walked out of the office, he said, almost as an afterthought, “I’ve been doing this a long time, and there’s one thing I’m absolutely sure of: with every challenge a kid faces, there’s some flip side. I have no way to prove it, but I believe this: there’s always a flip side.”

I think there is a flip side.  For Tim, it was sports.  That is when his tics vanished and the game had his full attention.  For me, it is dance or anything on stage.  I believe that everyone with Tourette’s just needs to find their one thing.  It changes the your whole world when you do.  When I dance or perform on stage I’m living in a new world.  I’m living in the moment and enjoying every second of it.  Tim ends by explaining how sports was his thing, he says, “But it was true what the doctor said about an ability to hyper-focus – at least when it came to sports. I watched a documentary about Pelé, then spent hour upon hour in the backyard trying to master his techniques – stepovers, cutbacks, stop-and-gos. I practised day after day, sometimes not even hearing my mom when she called me in for dinner.”

            These words are from Tim’s book, The Keeper: A life of Saving Goals and Achieving Them.

Stand Up, Stand Out!

                                                                  

I was able to compete in the Miss Utah USA pageant this weekend, I didn’t win, but I learned so much.  This was an amazing opportunity because I had the chance to get awareness out about Tourette’s Syndrome.  I may not of won, but I did discover how much support I have from so many people.  Walking out on stage and wearing my insecurities on my sleeve was nerve racking.  But the feeling of accomplishment was life changing.  I am so thankful for all of the support and wonderful words of love and good luck.  I want to change the world and by overcoming my fears and insecurities, I am one step closer to accomplishing that.

"Why fit in, when you were born to stand out!"  -Dr Seuss

Studying with Tourette's Syndrome.

Tourette's and school just don't seem to go together.  When I am in class and around a lot of people I want to try and suppress my tics as much as possible in order not to distract the other students and cause a scene.  But it's really hard.  Either I am concentration on what my teacher/professor is telling me, or I am squeezing all my muscles as my response to hold in my tics for as long as possible.  With this week being finals week, my tics are crazy.  I feel bad to study in the library because I feel like I am disturbing every one when I throw my notebook, or knock my pencil off the table, or the worst, when I sit and smack my arm on the table.  I feel awful and I feel like I need to explain to everyone why I am doing this and why I can’t stop. Studying is so hard when every few minutes I have to take a “twitch break.”  Focusing is nearly impossible because all I can think about is if people are watching me.  I do work with the disability department to make sure that all of my professors know and understand why I sit in the very back of class and why I prefer to take all of my tests alone.  But then I feel different.  I am thankful that all of my professors have been really good about working with me, but having Tourette’s bothers me most when it comes to my schoolwork.