I Have Tourette Syndrome So Why Don't You Learn About It? I Bet You'll See It In Public!





Let's just start by saying it ain't what you see in the movies and TV shows.





Even the TV shows about Tourette Syndrome. A lot of those shows are the worst-case scenario for people with Tourette's and, often times, the people are not handling it very well. For example, in 2007 MTV came out with a Tru Life episode about people with Tourette Syndrome. One of them was a stand up comedian. His Tourette's wasn't the worst ever but it was moderate, at the least. They put him in situations where he did not succeed. I remember watching him reach over the table at his date and knocking the girls water over. Not a good situation to put himself in. If you have a tic where you shake your hands, you probably shouldn't be reaching around water glasses. Another one of the guys was a professional motorcycle stuntman. He got hurt a lot. As if you don't get hurt enough doing professional stunts, can you imagine being 40 feet up in the air on a dirt bike and suddenly you have a motor tic? I don't know how his career is going but I know that happened to him and he got hurt! Whatever, though. If he wants to pursue his dreams, he knows the risks. Tourette's doesn't stop anyone from doing anything in most cases.





What are tics? It's not a tick like a bug. You can't catch it. Tourette's isn't contagious; it's genetic. Tics are motor movements and vocal sounds people make. Almost every person with Tourette's has different tics but the key difference between nervous tics or even compulsive tic disorder is that people with Tourette Syndrome have both vocal AND motor tics. They also change. Regularly. So you get used to one and a year later, that one goes away and you get something new. It's the gift that keeps on giving! All kidding aside, they change pretty regularly. Over the years, my motor tics have been all sorts of things: tapping on my desk or knee, tensing my neck muscles, clenching my hands tightly, shaking my head (as if I were moving my hair out of my face), and, right now, I pull my shoulder joints in and out of the socket. It sounds great and feels even better! Some of them are just a nuisance, like shaking my head but, when you're trying to read a book, it sucks. After shaking your head all day at school, your head hurts like mad. There are worse things, though. I knew a boy who would compulsively slam his fist into his leg whenever he was sitting down or standing up. He had huge purple bruises. Mine certainly could be worse!





Vocal tics have their ranges as well. Just to come right out and say it, yes, the swearing vocal tic exists! It's called coprolalia. The word comes from the Greek word kópros, which means "feces" and the word laliā́ which means "speech." Simply, it means crap speech! There's an episode of South Park (that is incredibly funny but horribly medically inaccurate) where Cartman "develops" Tourette Syndrome so he can swear and say whatever obscenity comes to his mind. This doesn't really happen very often. The people I've known with coprolalia as a tic generally say the same sorts of things repeatedly. I was at a Tourette's confefence in DC when I was a teenager and there were maybe 4 out of the 500 people with Tourette's there who had coprolalia. One of the guys would compulsively scream "SHIT" and another girl would say "JESUS" loudly. None of them just randomly spouted different swears and hatespeech. There is echolalia, as well. Echolalia comes from the Greek word ἠχώ, which means "echo" and, again, the Greek for speech. There was a pretty good episode of 7th Heaven in 2000 where a boy had Tourette Syndrome and had echolalia. He would just repeat things other people said. For example, one of the characters said "sorry" and the boy goes "SORRY SORRY SORRY!"

Check out the episode. It's free to watch online and it's a pretty good indicator of what Tourette Syndrome actually looks like. It even shows the boy echoing in church and how much people do not understand what was going on. Pretty rad for a show to tackle something like this. It's also pretty cool because one of the main characters, Simon, sticks up for the boy when a bully wants to beat him up. That's how it was for me. People tend to fear what they don't understand. I always tried to educate people on my condition whenever I could. I still do now as a 28 year old adult. I've worked with pharmacists who don't know anything about Tourette Syndrome. Once people are educated about something, they tend to accept it and move on unless they're just completely ignorant. Some people are just ignorant. If you've educated them about the condition and they still pick on you, they really aren't worth the trouble because they just aren't a smart individual, generally speaking. I had a friend in middle school who stuck up for me when I was getting picked on. He said to the guy "Ya know, if you get to know Aaron, he's actually a pretty cool guy." I'll remember that for the rest of my life. I didn't go to a huge high school so I was pretty much with the same group of students from middle school, when I came from private school to public school, all the way through high school graduation. I would tell a couple people what was going on and they would tell other people and, after a while, everyone just knew Aaron had Tourette Syndrome & nobody cared anymore.





I often describe it to people as a "sneeze." You know how you feel a sneeze coming and you know you're going to sneeze no matter what? You can really try hard and focus all your attention on NOT sneezing by holding your nose or something like that but, eventually, you're going to sneeze. That's how tics are. I can hold them off for periods of time but it pretty much takes all my attention to do so and, when I stop focusing on holding them off, they just come out twice as bad. I had a friend in high school who nobody ever knew had Tourette's because he was just crazy good at holding them in all day. He always played tennis after school and ended up a multiple time state champion. Nobody notices his tics when he is running around a tennis court! It's been the same thing for me with music. I've played in band and recorded an album with a metal band. It was pretty awesome because I played drums and I could just let my tics go wild. Everyone thought I was just really into the music.





Tourette's can be kind of weird, too! Whenever I'm super focused on something, I just don't tic at all. I don't think it's this way for everybody but I know it is for a lot of people with Tourettes. I played trumpet in the marching band in high school and everyone was worried that I would be twitching my head while in a competition but for some reason, I would get locked in to the music and wouldn't have a tic at all. Pretty crazy!





Going back to coprolalia and echolalia, it is an incredibly small percentage of people who have Tourette's that have these kinds of tics. As I mentioned before, at a conference with over 500 people who had Tourette's, I only remember 4 having it. These were people from all over the world, mind you, not just the US. There was a girl from New Zealand.





I hope this educates you a little bit on Tourette Syndrome. Yes there are TV series that have Tourette's in them but it's not all perfectly accurate and they're often not a perfect representation of people with the disorder. It also focuses only on their tics and not the other stuff that comes along with it. For example, for most of my time after being diagnosed when I was in elementary school, nobody really knew how to treat it. My mom had to drive me 2 hours to the nearest medical university where they had a neurologist who would treat me. I took so many different medicines it's almost crazy. Nobody knew how to treat it so they treated it the same way they treat other movement disorders such as Parkinson's Disease and even schizophrenia and epilepsy! I took medicines that made me a zombie. Sure, I didn't have many tics, but I was also asleep all the time. I even was treated for about a year with a blood pressure medicine. It worked pretty well, believe it or not! Now that people know more about it, it is more widely studied and understood so there are more doctors that know how to treat it. I still go see a psychiatrist because he is the most educated person on things that go on in the human brain. I can't educate you on where Tourette's comes from other than it is genetic and they believe it comes from the fathers' side of the family. It's also believed to be in the same "spectrum" as autism. Basically, this means that if I have a kid, that kid has almost a 100 percent chance of having Tourette Syndrome. If my dad were to marry another woman (I pray he doesn't because I love my mom and my dad and love the fact that they are together) and that woman had autism disorders in her family, the child would be a lot more likely to have Tourette Syndrome than if my dad married a woman who wasn't a carrier. They're working on isolating the gene to figure out exactly where in the brain it comes from but they still don't know. A few years ago, I gave blood samples to a study so they could try to figure out where in the brain it happens. The more they know, the better they can treat the disorder!

Keep in mind, it's a disorder not a disease. You can't catch it. It isn't contagious. Someone who has it definitely doesn't want to have it but it does not define them. Tourette Syndrome isn't who they are it is just a part of them. Has it been a big part of my life? Sure. Not always in negative ways. I've gotten really good at speaking in front of groups of people and have gotten pretty savvy at being able to tell people about the condition quickly. I can talk to anyone. It's helped me in jobs because I can strike up a conversation with anybody.





I bet you will start to notice more people who have Tourette Syndrome now that you know more about it. A lot of people aren't diagnosed so they don't even know why they're doing what they're doing.





Share this blog and tell someone about it! We learn something new every day! Feel free to leave me comments if you have questions that I haven't answered. It isn't going to hurt my feelings if you ask!



