Tourette's Syndrome

Introduction
Tourette's. If you watch a lot of TV, you've probably heard of the disorder before. The sad thing is, the media's portrayal of the condition gives (as usual) a very distorted, and downright confusing perspective about what Tourette's actually is, making it an object of curiosity and sensationalism, rather than the true Neurological disorder that torments individuals and schoolchildren worldwide.

What is Tourette's?
Tourette's Syndrome is a neurological (not psychological!) condition wherein a person suffers from various strange physical and/or verbal outburts, commonly known as “tics.” Even if you're not familiar with Tourette's, you're almost certainly already familiar with tics. If you've ever known someone who sniffs or clears their throat excessively and randomly (i.e, they don't have anything in their throat or nose, but do the weird movement anyway), that's probably a tic. Tourette's is basically a large collection of these tics, that persist for a long time, and in certain cases change or cycle according to certain patterns. In other words, if you know someone who tics a lot, they probably have Tourette's. Those are the symptoms.

What is a Syndrome?
A syndrome, really (in my woefully inadequate layman's terms) is just a collection of symptoms and conditions: you have symptom A, B, and C, and they follow conditions X, Y, and Z. A syndrome is in this sense completely different from the cause of it. AIDS – Acquired Immune Deficiency Syndrome is not the same as HIV – HIV (Human Immuno-deficiency Virus) is a virus. HIV infects you, and when it's done its thing leaves your body in a medical state we call AIDS.

Sort of the same thing with Tourette's, except we don't know what it is that causes your body to wind up in the state that we call Tourette's Syndrome. There's no real consensus (and very little evidence) to give us any real idea about what causes Tourette's. The closest anyone's told me is that they've pretty much narrowed it down to the brain, and something about misfiring Neurons. One theory is that Tourette's is partly genetic in nature: (we have observed, for instance, that Tourette's is inheritable). Tourette's, this theory goes, is the result of a certain gene (or set of genes) that are different or mutated, but are only prerequisites for the condition. A later “triggering” event, perhaps a Strep infection – then triggers the syndrome and switches it “on.” That, however, is only a theory.

Symptoms The most common symptoms of tourette's include these sorts of tics:

Vocal tics:
These can come in many forms, but generally these sorts of tics usually are manifested as grunts, short utterances, sniffing, nonsensical syllables, throat clearing, on the simple side. On the complex side, they can be whole words (or phrases or even sentences!), words repeated after other people (echolalia), stuttering or words repeated after oneself (palilalia), or (most famously) obscene words that are innapropriate in a given social context, such as curse words, derogatory terms, or racial epithets (corpolalia).
Physical tics:
These also come in many forms, but the most common are things like finger and foot-tapping, fidgeting of any sort, rhythmic drumming of fingers, twitches in the neck, eyes, arms, etc. Sort of half-way between vocal and physical is corpopraxia, which is the making of obscene gestures.

Now here's the kicker: none of these symptoms are under the patient's direct control! They are impulses that the person with Tourette's has limited control over, at best. You could literally have a quiet, mousey Southern Baptist girl, who is very, very shy and quiet when she is not exhibiting Tourette's syndrome, but when her symptoms begin to flare could curse like a sailor. That's an extreme, it should be noted – most Tourette's syndrome is milder than that. I mention that though as an example. What would your reaction be if you were to meet someone like that? Would you assume they were a person who was leading a double life? That they had some sort of “repressed” personality underneath that the Tourette's let loose? (thanks a lot, Sigmund Freud!) The truth is actually no in both cases. In our example, our very shy, quiet girl who has loud, obnoxious, and obscene tics, is not letting some facet of personality she's hidden away out into the open. A better description is that the connection between her brain and her body is having a minor short-circuit.

Incorrect movement and speech orders are relayed from her brain, garbled in transmission, and result in strange and bizzare behavior that we call "tics." Now, people with Tourette's are not mentally handicapped in any normal sense of the word – we are as intelligent (and as some surveys suggest, more so, but that may just be my ego talking) as any normal person, and do not have any developmental or social disorders besides the direct effects of the symptoms of the Syndrome itself.

FAQ
I will now answer some frequently asked questions about Tourette's:

Q: Can you really not control the tics?
A: No. I really can't. That's why it's Tourette's Syndrome.

Q: Really?
A: Most people really have a hard time grasping this, because it is a pretty alien thing to experience if you're not familiar with it. Therefore, I don't fault people who find the disease hard to believe. I've met several people in my lifetime who had known me for years and still refused to believe that Tourette's was real (there were some not-so-subtle accusations here and there that they thought I was a hypochondriac, faking the symptoms for attention).

Q: You must have SOME degree of control?
A: That's a fair question. I do have some control, but only to a limited degree. Tics cannot be suppressed entirely through even the strongest and most fastidious discipline. The impulse or “urge” to tic is Neurological in origin. It's not the same as trying to fight off a temptation to eat a slice of cake when you're on a diet. Usually when you leave the cake and go into another room the impulse is gone – not so with Tourette's. The impulse is abstract and different from “wanting” something. It is better described as being “compelled” to do something. If you have any obsessive-compulsive tendencies, this is a good analogy. Do you know anyone who steps over cracks? Who lines up tuna-fish can labels or does other weird rituals, like making sure the closet and dresser doors are all closed before going to bed at night? If you do or are such a person, the urge to tic in Tourette's is very similar to these. Now, I can suppress some tics. But I only have so much “energy” to do so, and it is limited. If I try to suppress every tic, I literally become exhausted and they all fly out at once. So if I have the impulse to tic and it's very, very important that I suppress them, I do so. However sometimes(most times) that's just not possible.

Q: Do you have less impulses to tic in certain places or situations?
A: Absolutely. Now, there's no real discernable pattern, like “low stress” or “high stress” or “casual” or “formal” even. I've been in low stress, casual situations and ticced just as much as when I'm in high stress, formal situations. I've also been in both situations where I have no impulses to tic at all. One thing is pretty consistent- whenever I get into a state where I feel “jittered,” as I describe it, tics increase across the board. Caffeine, as well as a lack of good sleep, will do this to me.

Q: Do you have a good analogy for what the strange ebb and flow of tics you mention is like?
A: Sure. Take a boat in the ocean, for instance. However much water is in the boat itself, spilled in from the ocean, represents the amount of tics a person is having. Now, you have a bright, sunny day, still water, barely any waves. The man in the boat doesn't need to put any effort into bailing water (suppressing tics), and is having a nice nap and not doing anything. This represents that in certain situations, a Tourette's patient exhibiting no symptoms may be showing no symptoms not because he's suppressing all his tics, but simply because right then he has no tics to suppress! Now, take a case where there's a big squall going on, the waves are six feet high, and the poor little man in the rowboat is bailing water as fast as he can and it's still all the way up to his knees and gaining. In this situation, the tics are raging, and even though the patient is putting ALL his effort into suppressing tics, he is still having more. This metaphor is meant to communicate that the amount of tics a person is having is a very poor indicator for how much effort is going into suppressing tics. Therefore, if you were to punish a child's behavior in order to get him to do a better job of suppressing tics, if you were to punish him when he was ticcing like crazy, you are actually punishing him when he is trying his hardest!

Q: Does it hurt?
A: Not particularly. The impulse to tic nor the compulsion to tic actually hurts. The only pain involved in Tourette's is that from the physical movements involved. You can try it yourself in your own home, twitch your eyelid, stretch your neck muscles, or move your head back and forth really fast. Doesn't hurt, does it? Now, if I were to leap up out of my desk on a strong outburst and hit something and fall over, that might hurt...

Q: Will you pass it on to your kids?
A: Maybe. It also depends on whether my kid is a boy or a girl, since the incident rate of Tourette's is a lot higher in boys than it is in girls.

Q: Do you have ADD/ADHD? (Attention Deficit Disorder/ Attention Deficit Hyperactivity Disorder)
A: I don't think so. But then again, ADD is often overdiagnosed these days anyway. With the number of people being told they have ADD, it sounds like NOT having it is the disorder! However, ADD and ADHD are often found in Tourette's patients. They're among a number of conditions that are kind of “companions” to Tourette's. Tourette's is often confused for ADD or ADHD.

Q: Do you have OCD?
A: Do a small extent. I have obsessive-compulsive tendencies, but I don't think it would be fair to say I have the full-blown disorder. I have little rituals and things I do, but I don't do anything on the level that begins to interfere with either my life or that of others. Most Tourette's patients have at least some obsessive-compulsive tendencies, and a good number have OCD itself.

Q: Do you know when you're going to have a tic?
A: Usually. Tics are usually preceded by a general feeling – the “impulse” I mentioned before. It's a, “oh crap, here it's coming what am I gonna dooo... too late.” sort of thing. Much like a sneeze, perhaps. Or a blink. If it's a verabl tic, sometimes I know what I'm about to say in it, sometimes I'm completely surprised. If the verbal tic I'm about to say is something I have a good reason not to (To a girlfriend: “You sure look FAT today!”) I can sometimes change the words around to something a little less offensive and satisfy the impulse anyway.

Q: How common is corpolalia/corporpraxia? (cursing, making obscene gestures)
A: The cussing is NOT the most common form of Tourette's, and it's actually quite rare. I have a decently advanced case of Tourette's – I consider myself on the severe end of the moderate cases, but not quite a full-blown severe case (let me tell you, a severe case of Tourette's is another whole quanta above me and begins to make basic tasks difficult - but those cases are extremely rare.. I exhibit almost all the symptoms of Tourette's I've ever read about, including corpolalia (and possibly corpopraxia). Corpolalia for me is usually not in the form of cuss words – it used to be, but then I started to take cuss words out of my general vocabulary, stopped saying them in my regular speech – and I noticed I would then say them in Tourette's less often. However, corpolalia has never been a big problem for me so for those who have a bad case of it, even this drastic measure might not work. Corpolalia for me usually takes the form of really bizarre insults, or backhanded compliments. Almost consistently, I say these things to the people I love and care about the most, which really bothers me. I almost always immediately apologize afterwards, mostly because people without Tourette's have a hard time realizing that there is a personality underneath the Tourette's that is completely distinct. Most people just lump the Tourette's in as a part of your demeanor and don't realize that it doesn't speak for the “real you” underneath.

Q: Do you ever have problems with people accepting you?
A: Here and there. Middle and High school were a nightmare because of it. Teachers always used to discipline me and tell me to stop acting out and all the kids at school called me “spaz” and various other things. Mostly people just didn't believe me when I said I couldn't stop. Eventually it got so bad that I decided they were right and I really WAS trying to get attention and just couldn't stop myself. I was greatly relieved (at least at first), when my father (who is also a Doctor) diagnosed me in High School with Tourette's Syndrome.

Q: Did things get better after that?
A: Yes and no. It was incredibly liberating to finally stick a name on my condition, realize that there were other people with my disorder, and finally be vindicated in saying that I really couldn't do anything about it, just like I had always said. But nothing's that simple. There were, as I've said, a good number of people who remained unconvinced simply because a disease like Tourette's didn't fit into the judgments they wanted to make about people – and I can understand this position (though I vehemently disagree, of course). One thing humans take for granted is that people are, by and large, in direct control of their actions, which is why we hold eachother accountable for things we do, even when we “didn't mean” to say that, or do that, or whatever. If you did it, the consensus is, you meant it. And that works for 99% of cases. Except with Tourette's syndrome. This disease makes you do things you wouldn't want to. Fortunately, there's no real intelligent/malevolent force guiding these uncontrollable actions, so they're really random more than they are vicious and harmful. A guy with Tourette's is more likely to be seen as goofy rather than dangerous. However, some people (you know the kind) walk around the world looking for opportunities to be offended. Tourette's presents them with a golden opportunity, and as much as I try to explain or apologize, there's nothing I can do about them. But that, as they say, is life.

Q: Did people really treat you like that?
A: It was High School, of course they did! And before you feel all sorry for me, keep in mind that I'm still a being with free will underneath the Tourette's. I grew a bit of a chip on my shoulder from the whole experience and became kind of a jerk, which I think was uncalled for from my current position. Everyone is dealt their own stack of cards to play with, and it's really stupid to complain that others got a better hand than you did. Everyone has their own strengths, their own weaknesses, and their own particular cross to bear. Getting bitter about what did or didn't happen to you won't do anything for you, and feeling entitled to be miserable is just plain dumb.

Q: Is there a cure for Tourette's?
A: Nope.

Q: Is there treatment?
A: Yeah, but it generally sucks and varies in effectiveness from person to person. I've been on all sorts of drug cocktails and I actually prefer Tourette's to the side effects of most medications. (Not that I'm against western medicine or anything like that – just that they don't specifically make treatment drugs for Tourette's, and just give us “trial-and-error” stuff originally developed to treat other diseases. Mostly they give us anti-depressants and things like that. If there was a really effective treatment with low side effects I'd seriously consider taking it.)

Q: So you're stuck with it for the rest of your life?
A: Maybe. They've observed that around the age of 20 or so, the disease fades out in some cases and the symptoms greadually get better until the syndrome is either gone or unnoticeable. In the other cases, it stays at its current intensity basically forever until you die.

Q: How old are you?
A: As of this writing, 21, but I was born January 28, 1984 AD so you people reading this in the future can figure it out from there. So I'm right at that turning point. Honestly, I don't care which way it happens. There's plusses and minuses either way – if I lose the Tourette's, heck, that's great. If I'm stuck with it, I've gotten used to it, and I must say it would be weird to wake up one day and find it gone, as my underlying personality has really been warped and changed in weird ways (hopefully for the better) by having Tourette's layered on top of me.

Q: How long have you had Tourette's?
A: Pretty much all my life. The earliest concrete, documented symptoms I can remember are around sixth grade, or when I was 11. I remember this because that's when I started getting disciplined a lot by my math teacher for what I now know to be a text-book case of Tourette's symptoms.

Q: Man, it would be so cool to have Tourette's!
A: If by that you mean, “It would be so cool to be able to do all that stuff and get away with it!” you might be right... HOWEVER, keep in mind that that statement comes along with “and you HAVE to KEEP doing it, long after it gets boring and all your friends just find it annoying.” Believe me, Tourette's has a way of making you popular in a very surreal way with the right sort of people, but the appeal is pretty much purely for its exoticness . You can judge the caliber of your friends by how long they stick around you after the novelty of the syndrome wears off.

Q: How do your friends deal with it?
A: Pretty well, mostly because I have good friends. My roommate understands the condition probably the best of anyone I know just because he sees me day in, day out. In this sense he has a better working knowledge of what living with a person with Tourette's is than my own immediate family! (especially because I usually don't have tics back home at my parents house) In today's must-be-politically-correct culture, it's so funny for me every time I explain to someone I have tourette's, because they ALWAYS do the same thing:
(nervously): “Oh, don't worry about that! I'm totally cool with it!”
The funny thing is, they have no idea what they've just decided to tolerate, or even if they should tolerate it! Now, having dealt with discrimination in the past because of my disorder, I don't want to encourage anyone to give people with Tourette's Syndrome any crap. However, there are some issues where it's best to take the “world owes me a livin'” view that some disabled people sometimes get and be objective about it.
In a classroom, for instance, I will often tic a lot. The experience of having me in the classroom is a lot like having some moronic freshman in the back who thinks he's a lot funnier than he actually is making wisecracks all through the lesson. Only difference is, I'm not consciously trying to make lame jokes all through class, it's the Tourette's that compels me against my own will. Now, is it fair to say to everyone who payed good tuition money to say, “sorry, pal, you have to deal with it and shut up?” Maybe, maybe not. The ideal situation is that everyone is gracious enough to tolerate me, AND that my symptoms are not something that really interferes with the learning experience. This is usually the case. But in situations where I've had extremely strong symptoms I've excused myself from class, and I usually make separate arrangements to take tests, since these usually require more silence than regular class (and it would be REALLY awkward if I started yelling out answers to the problems spontaneously). The reason I make a big point out of this is that I've had some cases where people who first meet me say, “Don't worry, I can deal with that” with regards to the Tourette's, before they have any idea if they actually can. I've had people make that statement before they had any idea how irritating and annoying Tourette's can be if you can't accommodate yourself to it. That's my main concern. Don't let your mouth sign checks your body can't cash, as they say.
Q: Do you ever say anything that's actually what you're thinking?
A: This is a dangerous question, but the answer is yes. Sometimes, ideas that float up to the top of my consciousness are just blurted out. I'll tell people to their face that I think their nose is really, really big (at which point I will try to point out that big noses are in fact often attractive, and much less generic and bland than the barbie-doll custom jobs the ladies in the magazines are sporting) or things like that. However, I say enough random and strange, and often flat-out “things-I-don't-believe-at-all” (to a skinny-as-a-rail-girl in serious need of a 'sammich: hey FATTY! What's up today, FATTY McFATTERSON!) that there's no reason to try to deduce which are the ones I'm actually thinking. When people try to analyze my tics as a window into my head, they usually end up thinking all the crazy scandalous things I say are what I believe (when they invariably aren't) and all the other things I say aren't true (when they usually are). So I'll say something weird and offensive, they'll believe it, and I try to explain it isn't, and suddenly this self-proclaimed expert pretends like they've read my mind and it's too late to weasel out of it. Hey? How would you like to be judged for everything you've ever thought of? I think none of us are innocent in this regard.

Q: Is your Tourette's really just a manifestation of some repressed sexual urge?
A: Shut up, Freud. Nobody likes you.

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