Living with Tourette's

Just call me Twitchy! I have Tourette syndrome, and though I make jokes about it quite often (like calling myself "barking" mad because, yes, I have barked at completely random moments before), it can be a difficult condition to live with sometimes. Sometimes funny, sometimes a pain, if you have it it's nearly always on your mind. Wondering when your next tic attack will be. Will you suddenly start blurting out strange noises? Have compulsive muscle tics? How will it manifest itself this time?

There's a lot of misconception currounding Tourette syndrome. The media doesn't help much with this, since most of the time the condition is in the spotlight it's on some talk show or another, showcasing more extreme cases and usually involving children. It gives people the impression that those with the condition are being set up for a life of ridicule and lonliness, never being able to fit in because of their socially awkward condition.

And while this is true in some cases, it isn't so for the majority. Most of us have somewhat mild cases, where the only manifestation might be a twitchy hand or the occasional repetition of words. Passing them on the street, you'd never be able to tell.

I'd like to dispell some of the common (and not-so-common) myths about this condition, and give you a little more insight into what it's like to live with Tourette's.

I'm sure everyone's heard about coprolalia, or compulsive swearing. It seems to be the media hallmark of Tourette's syndrome. If someone has Tourette's, they have coprolalia. This simply isn't true. Statistics show that only 10-30% of Tourette's patients have coprolalia as a symptom, making it a minority of cases.

That's quite a wide discrepancy, though. Why such a big range of numbers? Is it 1 in 10 or 3 in 10 people that have it? The problem with narrowing that down is that some people simply do not know they have Tourette's, or at least have never received a diagnosis of it. The tic may be so minor that most people don't pay it any mind. So while 30% of identified Tourette's patients may have that particular symptom, there are more people out there with the condition that don't even know it. If all those people could be identified as well, and their data added to the polls, the percentage would drop a considerable amount. Hence the wide percentage.

When I was first diagnosed with Tourette's, I had mentioned it on my blog, saying that I apparently had a mild case of Tourette's. One person responded by saying that there's no such thing as a mild case of Tourette's. "You're either hitting yourself and in constant sourceless pain, or you're not," were his words. I can't fathom where that misconception came from. But just to my bases are covered, I'd like to state that this too is a misconception. Tourette's has nothing to do with hitting yourself or being in sourceless pain.

Tourette's is not typically one of those conditions that gets worse the longer it goes on. It's not degenerative. Your symptoms will not worsen over time. However, like many chronic conditions, the frequency of attacks may not only wax and wane, but also change. You get used to having a tic in your arm, and then suddenly one day you've got a verbal tic to go along with it. The arm tic may or may not disappear, it may or may not change to a tic in another part of your body. So while it mot not get worse, per se, it may change to something more inconvenient.

The tics themselves aren't painful, but the resulting overuse of the muscle group can cause aches sometimes, if the tics are strong and frequent. My hands have started to twitch rather badly lately, and so the joints have been aching in response. The verbal tics, blurting out strange sounds or repeating back the last words heard (known as echolalia) also do not cause pain, though they can be embarrassing sometimes. Imagine sitting on a bus, going to work, and then all of a sudden: "BARK!"

There's no cure for Tourette's, and most of the treatments involve muscle relaxants to help prevent the muscles from spasming. There are lifestyle changes that can be made to help prevent triggers, such as stress. Stress is often a major contributing factor to tic flare-ups. I've learnt this one the hard way.

Another misconception about Tourette's stems from the belief that the unusual behaviour is a sign of being mentally challenged. In truth, people with Tourette's can be just as smart of stupid as anyone who doesn't have Tourette's.

But what does it feel like to actually experience the tics and twitches? What's it like to go through this condition day in and day out? How does it affect my life?

Signs of Tourette's can actually be seen in childhood, starting with a simple transient tic. Stretching the mouth, wiggling the fingers, tapping the feet, that sort of thing. In most children, this goes away. But for Tourette's patients, it doesn't. The tic may vanish for a while only to re-emerge in adulthood. I didn't learn this until after my diagnosis, and was surprised to remember that I indeed did have a tic when I was small. I was forever stretching the skin of my top lip over my teeth, pulling down the skin under my nose. Or I'd stretch my mouth wide because the corners of them would feel weird and that was the only way to get it to stop. This went on between the ages of 4 and 7, if I remember correctly, and then as I grew up, they went away.

Didn't stay away forever, though! The next bout of tics didn't occur until I was around 20. My head wouldn't stop jerking to the left side, like it was trying to come into contact with my shoulder.

Verbal tics started soon after that. I find them quite funny, really. I get weird looks from time to time when they occur in public, but when you've got the right attitude about it, blurting out the occasional animal sound isn't that big a deal, and can get pretty funny. (Hence the "barking mad" jokes I make about myself.)

Numerous people with the condition (myself included) have reported that they feel as though they have to keep making the motion until "it feels right again," almost like you're trying to bring your body back into balance. It's mostly an involuntary motion, but at the same time there's a certain amount of control to it, as tics can sometimes be supressed until one is in a more private place, away from prying eyes. Thus most Tourette's patients can feel the tics coming on and can make that effort to suppress the tics if they wish. However, supressing the action increases the urge to make it. From my own experience, this makes me feel like my skin in the affected area is crawling, a sort of tingly twitchy feeling that's unpleasant and I don't particularly like to feel it. This same feeling accompanies the twitches as my body tries to "rebalance" itself and find that feeling of rightness again.

This desire for balance manifests itself in ways other than just tics, too. A lot of people with Tourette's have some mild measure of obsessive-compulsive disorder, or OCD. Not typically to the point of being upset if the books on your bookshelf stick out 1/4 of an inch too far, but more like feeling the need to do certain things until, as before, the feeling of rightness returns. After my diagnosis, that was another thing that came to light that I'd always done. When walking, sometimes I would suddenly become very aware of how hard my feet were hitting the ground. If one hit the ground too hard, on my next step I would have to tap the ground twice with my other foot, to make a sort of balance. Or if I stumbled or my foot slid unstead of landing flat, I'd have to do the same thing. Sometimes it would get to the point where I'd have to stop walking and tap my feet until the balance had been restored, and only then could I walk again without that niggling feeling like something was wrong inside me.

I'd always just chalked that up to me being weird. But this sort of thing is actually quite common with Tourette's patients. There's a great deal of emphasis placed on internal balance and the correct feeling.

As I mentioned above, the spasms in my hands have caused the joints to become quite painful. I suspect the sheer frequency and force of those twitches is related to stress, which is often known to cause flare-ups and tic attacks. Maybe it's the body reacting to not being in balance the way it's supposed to be, and the increased twitching is an attempt to return to that calm inner state. I'm not sure. It stands to reason, though, given the feeling behind other tics.

But other than that, my life has been normal. I am able to live normally, Tourette's does not cause me any major problems, and I'm relatively happy. I know I don't have a particularly severe case, and for that I'm thankful. Things could be worse. But for all the media likes to hype up the problems and symptoms associated with Tourette's, my case actually seems to be the most typical case. If you didn't know, you probably wouldn't be able to tell. I have told people that I have Tourette's, and the only one who actually believed me was someone who had it himself and noticed some of the signs.

If anyone has any questions about living with Tourette's, feel free to ask. I'm not the fount of all knowledge, but I can answer with my personal experiences and what information I've been given by textbooks and a local neurologist. I like taking some of the mystery away from conditions that shouldn't be mysterious in the first place.