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From the vault: College Q&A on Tourette Syndrome

In February, I talked to a class of 35 Washington (St. Louis) University medical students about Tourette Syndrome, and it could not have gone better! I thought I’d revisit that interview now that I am an actual student at Wash U! Enjoy!

Dr. S: Asked me when I had my first tic 

Me: I answered that it depends on what you classify a tic, then went on to explain that when I was 5 years old, I started picking and biting at my lips. I have heard some people classify this as a sensory tic but also have had it classified as a compulsion. After that, I had my first “classic” tic in 2nd or 3rd grade when I started sniffling, raising my eyebrows and tightening my muscles.

Dr. S: Explained further to the students that it’s very hard to distinguish between a tic and a compulsion, and the medical world is sometimes still unsure of which is which in certain situations. He then asked me if it feels like a tic.

Me: I told him that, yes, it feels very much like any other tic to me.

Dr. S: Asked me when I first knew I had tics.

Me: I answered that I knew I had these “habits,” as my mom called them for a long time. I didn’t actually know they were called tics until I was 16 years old. My mom always used to tell me to stop doing my tics and told me to use more self control because she didn’t know what they were either and just thought I could stop. This obviously didn’t work and I didn’t stop because I couldn’t.

Dr. S: Explained that this happens to many children with TS. Their parents don’t know the kid has TS and thinks the kid can control it so they tell the kid to stop. He then asked me if this made them worse.

Me: I explained that yes when my parents told me to stop or when anyone told me to stop, it just made the tics worse.

Dr. S: Explained that this happens to a lot of children with TS. When they tic and are told to stop, it just makes the tics worse. Then he asked me if I knew anyone with tics when I was a kid.

Me: I told him that no I didn’t know anyone with tics when I was a kid. My first cousin has Tourette, and I knew her as a kid, obviously, but I did not know she had tics or Tourette when we were younger. I didn’t know anyone personally with Tourette until after I was diagnosed.

Dr. S: Asked me how I made your documentary and how I got the people to participate.

Me: I explained that I made an informational video, contacted some friends with TS who I had met through the Tourette Syndrome Association and pretty much spread it around through social networking.

Dr. S: Asked me if I had ever talked about my tics in front of a group like this.

Me: I told him, “Nope! This was my first time!”

When we were done with our interview, Dr. S asked if anyone had questions for me. Only three people asked questions, though! Probably because they were too exhausted after that intensive lecture to think of anything intelligent to ask.

I was asked if I had ever tried CBIT (Comprehensive Behavioral Intervention for Tics) therapy for my tics. I answered that, no, I have never tried CBIT for tics, but I have OCD and I am doing exposure and response prevention therapy for OCD. I sadly don’t remember the second question for some reason — maybe it will come back to me. And the third person asked that if my tics went away when I was really focused on something — Dr. S had mentioned earlier about an athlete whose tics went away when he was playing a sport.

I immediately thought of coxing and said that I am a coxswain (or was) for the rowing club here and that when I coxed and steered the boat and shouted out commands that, yes, I didn’t tic and my tics went away for a little bit. Dr. S said that he remembered this from when we first met and that he remembers why I was made for coxing — because I am small and because I have OCD.

The class laughed at his joke, and Dr. S talked about how OCD has benefited many people and doctors in helping them in their work. Then Dr. S told everyone that he would send them the link to my documentary and they could watch it from their own computers. The whole thing went by pretty fast!

After it was over, a bunch of people shook my hand. They all seemed truly appreciative, and only woman said that she was so glad that I could come and that she thinks the students really benefited from seeing a patient and someone who actually has the condition because it brings the subject matter to a more real life perspective! Very glad I did this and helped the students learn more about TS!

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RuthieP

2 Comments

  1. Iv had tics since year6 I’m not in year 10 , my first tic was eye blinking , then a “bunny”nose, then I blew out my one nostrele, then I pushed my head back to touch the top of my back, I push my head forward to touch my chest, I push my shoulders back, suck my belly in,open my mouth wide and my vocal is I clear my throat, iv been the doctors and he’s diagnosed me with motor and vocal tics , but he said I have to wait till I’m at least 18 for a full diagnosis of TS , my parents are taking me back the doctors and askin for me to see a specilist, my dads never believes in tourettes or any other thing like that, or anything like that, but he actually believes I have it, when I’m at school, they get worse , and somtimes I can’t control my tics , I see people look at me , and the teachers notice them, but they think I just do it cause I want to, because I dont have tourettes cause ” I don’t swear” not everyone with tourettes swears, I just wnat a diagnosis so I can actually tell people the reason I do it , so they don’t just think its a “habbit” boring story but hay ho haha xxx

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