Tourette's Syndrome 101

Over the last two months or so, my Tourette's has gotten much worse.  I have developed a couple of annoying new tics.  One is an eye twitch, and the other is where I scrunch my face up.  Between the two, if I'm having a bad day, I tic probably 500-600 times a day.  Medication doesn't seem to have an effect any more on my condition.  Words cannot describe how frustrating it can be some days.

For those of you unfamiliar with the condition, Tourette's Syndrome is a neurological disorder that is usually onset in childhood.  In my case, my childhood "tic" was a sniffle.  I also had a nose rubbing tic.  They went unnoticed.  I wasn't officially diagnosed until June of 2009, when I was 34.  For the tics to be classified as Tourette's tics, you have to have multiple motor (body, hand, facial) tics and one vocal tic.  This is video that I took with my webcam a week before I was diagnosed:



I started having the "jerking" tic in August of 2006.  It was the only form of tic I had for months after the diagnosis.  Then, as my medication started to affect my Tourette's, the tics started to manifest themselves differently.  I would smack myself in the back of the head.  I would start tapping or touching my wife's shoulder.  I would sometimes just scream out loud.  And weirdest of all, sometimes, I would talk in an accent.  Mid-sentence, I would start speaking in an Irish accent, using Irish jargon and slang.  Maybe for a sentence or two, or sometimes it would go on for twenty minutes.  It was out of my control.

Having Tourette's is a lot like someone taking over the remote control for your body.  There are times in which I have zero control over my actions.  I've heard other people with Tourette's say that it's akin to holding  in a sneeze, which, for the most part, is true.  Different tics feel differently to me personally.

I have tics that give me a ticklish feeling or like a little surge of electricity between my shoulder blades right before my tic.  I can hold those in, sometimes for hours, but if I do, it gets very painful and I will tic much much longer than what I would have if I just ticked in the first place.  I have other tics that build up pressure in my chest.  It tightens, like a spring.  When I tic, it feels like that spring has had a chance to release.  Those tics require a "trigger" to occur, whether it be a location, a topic of discussion, a memory(usually something stressful).  I have a variety of other tics that occur without warning that I cannot control or hold back.  These are the most frustrating.

***NOT ALL PEOPLE THAT HAVE TOURETTE'S SYNDROME GO AROUND YELLING "SHIT, FUCK AND BITCH***  It's called coprolalia, and it occurs in less than 10% of people with Tourette's.  I for one, have been told that I have it.  I tend to say "shit" a lot as a tic.  I also have palilalia, which is where you repeat a word that you say over and over.  It's hard to explain, but when it happens, I cannot stop until the word either sounds right or feels right coming out of my mouth.  One of my recent tics is a bad stutter.  It gets worse with nervousness or stress.  Toastmasters, here I come.

I highly recommend watching a movie called Niagara, Niagara.  It came out in 1997, and stars Robin Tunney as a young woman with Tourette's.  When I first saw the movie about 12 years ago, I thought her character was ridiculous and over the top.  I saw it again about a year ago, and saw myself.  The movie itself is mediocre, but her performance is extraordinary.  You can stream the movie online for free on Hulu.com.