Thursday, March 21, 2013

Tourette's


No, this is not a post that is using Tourette Syndrome as a joke. This is actually a post about Tourette Syndrome. Why would I do that? Because I have Tourette’s.

I remember the first time I realized I had something that wasn’t normal. I was 9 or 10 years old and I was in Citrus Heights, California where other kids had made a bmx course out of a vacant field. I was with my brother Jason, and I was watching him and the older boys do whatever they were doing – riding bikes, talking, etc. I was just tagging along. Anyway, at one point, one of Jason’s friends who had been standing next to me for a few minutes, said to me with a genuinely concerned look, “dude, are you ok?” “Yes, why?,” I responded. He just casually said,  "oh, just sounds like you’re having a hard time breathing or something.” I had no idea what to tell him. It was the first time I remember realizing that what I did naturally, wasn’t normal.

I don’t remember exactly what I was doing in that moment to cause alarm, but I guess it was obvious enough to get noticed. And then suddenly, I noticed. But because my family didn’t say anything to me about it (that I remember), I put it out of my mind for the most part. It wasn’t long after that, that my mom (who has Tourette’s too) met a women at church who had a son with Tourette's, and they knew what this whole thing was and what it was about. He had it a lot worse than me, apparently. I don’t remember him or the situation. I just remember hearing the words, “Tourette Syndrome” for the first time. Well, at least there was a name to it. But I certainly wasn’t going to repeat it or bring attention to myself – my symptoms did that for me already.

I think that because I learned about it early on, that I was able to have it in my mind and somehow figured out how to escape through all the roughness of Jr. High and High School without many people even saying a word about it, and I don’t remember being made fun of  for it more than once or twice. Thankfully, it never really became an issue (huge credit to my friends!). Largely, though, that was because my symptoms are not nearly as bad as those you see in documentaries or in movie jokes, etc. Mine are a lot more subtle. In fact, some of you reading this may be surprised to learn that I have it.

Well, I know some of you, when you hear the word, “Tourette’s” thinks to a movie references or more extreme things. So I want to take some time to explain a bit about what it is and how it affects at least me…

First, Tourette’s (TS) is defined by the National TouretteSyndrome Association as “…a neurological disorder characterized by tics – involuntary, rapid, sudden movements, and/or vocal outbursts that occur repeatedly.” These can vary greatly between those who had Tourette’s. For instance, the more extreme cases involve pretty extreme physical tics that can be distracting to those around them. However, some people have tics that are pretty subtle, and only those who have learned to look for them, see them. These might be a consistent clearing of the throat or a persistent sniff even when a person doesn’t have a cold or allergies. Or it might be a small movement in a joint, like a neck movement, a shoulder shrug, or other.

TS is often undiagnosed as well – thought to be just some “nervous tic” or something. But when that tic goes on for years? Yeah, not likely it’s just a “nervous tic.” There are some important things to know about TS that all parents should be aware of…

1.  TS is an inherited, dominant gene. In fact, about 50% of children get the gene passed from the parent.

I can vouch for this one. I inherited this from my mother (it’s ok mom, it’s not a bad gift). I am one of eleven children my mother had. There are at least 4 of us siblings with TS in my family. I have 5 children of my own, all under the age of 8, and the two oldest already have shown to have TS. I have at least 2 cousins with TS as well – both on my mother’s side of the family. I sometimes wonder if it were caused somehow from the genes of my Great-Grandmother, Minerva Teichert, who was a well-known (and amazing) artist, and who spent years with lead paint splattered brushes in her mouth, and paint on her hands. Who knows – perhaps?

Interesting thought…I bet because of the pure numbers of people in my family to have TS, we have to be one of the most prolific TS families in the world. Wouldn’t you think? That would be interesting to know.

2. It is 3-4 times more likely for a son to get it from a parent than a daughter

This is true in my family (my siblings, etc). My two cousins who have it are both males.

3. The estimates are that about 200,000 people in the US have this disorder.

I bet it’s higher than that. I know several people myself that I know have it, but have never been diagnosed and most would never admit that they have anything like TS. Heck, could you blame them? Hollywood makes fun of it enough – and then the rest of society picks up the joke. Why don’t we make fun of Parkinson’s anymore (it comes from a breakdown in the metabolism of the same basic chemical groups)? Oh yeah, one of Hollywood’s own champions the cause.  To help research, we need to identify more of those who have it. If we continue to have this astigmatism attached to it, then that’s tough to do.

4. There is no race or ethnic group that is immune or that seems to dominate the disorder.

Can’t say I know anyone else (personally) who has it of another race or ethnic background, but there are videos that show it and I believe the statistics.

5. There is actually no official, defined cause for TS yet. However, it is caused by the body having an abnormal, if not extreme metabolism of certain brain chemicals – especially Dopamine

Ok, this is a really interesting part…Dopamine, you see, is a chemical used by the brain (plays a major role) for reward-driven learning. This means that folks with TS tend to have some OCD tendencies, and some have full-on OCD symptoms. Oh, and this also brings tendencies toward compulsion. Sound familiar? Well, that’s because ADHD is caused by a related chemical dysfunction. In fact, here is a BIG reason getting TS diagnosed is important…

6. Statistics for people with TS show that between 65-85% of them also have ADHD. It is one of the highest correlations of two disorders there is. 

Yes, I also have ADHD (yeah, I know that’s not news to anyone who really knows me). So, if your child has TS, then there is a high likelihood there are other issues at stake here. I will just say that the compulsiveness, the reward-learning stuff, and the OCD stuff can be some of the hardest stuff to deal with because it means that the person is much more likely to be susceptible to addictions and addictive-like behaviors. There are, of course really good/amazing sides to this, which I’ll cover in another post.

7. There is no cure for TS. And not many treatment options.

Although in rare cases, some people grow out of it as they grow up,  most live with it their entire lives. Unless the symptoms, in terms of the tics, are really bad and interfere with normal life, many doctors don’t treat TS – and I wouldn’t either. Usually it becomes discussions around how to deal with the additional problems brought by TS – the ADHD, OCD, etc. And there are some treatment options for that, which can help.

8. Only about 15% of all cases have the version of TS that has the person screaming obscenities (called Coprolalia). But of course, 100% of the jokes are about this.

9. Most kids with TS don’t have special educational needs – at least not from the TS. It’s the combination of that with ADHD and other learning disabilities that may accompany TS that are potential problems.

10. The research shows that people with TS have the same IQ range as the normal public.

In my experience, however, this changes with those who also have ADHD and other disorders with TS. Most of those I know tend to be exceptionally intelligent in at least some areas of intelligence. They certainly can think different.

That’s enough facts and commentary on them. I am going to write another post about this soon, but let me explain just a few more things from the perspective of one who has it…

1. TS is not easy to have. In fact, it can be down-right exhausting – Mentally, Emotionally, and Physically – especially physically. 

2. To explain how it feels/works in common language, let me explain it like an electrical system. When an electrical system is slammed with too much electricity, it will find the weakest and easiest place in the system to escape and do it, until the system’s input dies down. Your body is like a big electric system. Your brain/nervous system uses certain chemicals like Dopamine to create energy (electricity), which it then uses to do stuff. A person with TS has a problem because their body is WAY too efficient at metabolizing/using these chemical,s and it produces a large excess of it. This excess then runs through the body looking for a way out. For whatever reason, it finds certain muscle movements as a way to escape – sometimes in dramatic ways, sometimes in subtle ways – a true mystery sometimes how it decides what to do. However, there are some that make sense. An example is when I get a cold or allergies. Because my nose runs (from the cold, etc), I naturally sniff - like normal people. But, when the cold is up, my nervous system has burned into the memory of those muscles to keep doing it just to burn energy. Because it was a repeated action while sick, my body is much more likely to pick up on it. Most of my tics, in fact, are related to some other physical action that gets repeated due to injury, over-use, or sickness. Make sense?. Good.

3. Symptoms can vary greatly in their prominence. Sometimes my tics are almost non-existent. Of course, when I sleep they are gone, but even during the day my symptoms are very mild or gone for even long periods of time. For example – as I type this, I have noticed that my symptoms are pretty non-existent. The experience of listening to music while writing stimulates me and calms my system. But when I am overly tired or stressed or unhealthy, my symptoms can be painful, tiring, and hard to deal with - sometimes making it near impossible to sleep until WAY into the morning.  I have a neck/shoulder tick that I do (had that one a long time) that makes me flex/scrunch the muscles in my shoulder and neck really hard. Sometimes that can cause bad headaches for me – but I have very strong and lean muscles there…haha. My vocal tic is usually the last one I get as my Tourette's ramps up and signals me that I am VERY overrun with chemicals in my system.

4. Sometimes Symptoms change. I have a whole set of symptoms that can come and go. At extreme times, I exhibit several at once. Most of the time, however, I have 1-2 going on at any one time. Sometimes I have ones that disappear completely and sometimes I get new ones, depending on if I have extreme behavior with my body. For instance, I am on a computer all the time and use a mouse A LOT. I have developed a tic in my right wrist that involves flexing the muscle and moving the wrist down and to the side. Over a day, that one can tire the muscle pretty bad.

5. We also have a hard time getting to sleep sometimes (as much a problem with TS as ADHD)
I usually go to sleep between 12am and 2am. I probably go to bed before midnight maybe half a dozen times in a month. Maybe. And life certainly doesn’t allow for sleeping in these days. You’ll notice that I am writing this at 12:40am and by the time I finish it (editing, revision, etc) will be probably 1:15-1:30 am. This is normal for me.

6. Tics are virtually impossible to stop. It is like holding your breath. Doesn’t last long. I have worked A LOT to try and learn to control mine. But it has to be a very conscience thing and it is very difficult to do consciously. Sometimes I still can’t do it even when trying.

7. Meditation and relaxation is great for me. The conscious effort of meditation and practiced relaxation helps me calm down and relax my symptoms. How long it lasts depends on how life is going at the moment.

8.  Physical exercise is VERY helpful – get me out running and playing and my symptoms drop off the map while I play and help during the time in between.

9. Food matters. What you eat definitely affects your symptoms. And we’re learning more and more about this.

10. Physical touch can help. Gentle touch and massage can help my body slow down and relax. Amy (my wife) sometimes will rub my hand when my symptoms are bad, to help me calm down and fall asleep at night. In general, soft physical touch helps my body relax. It may not work for everyone.

11. You may not have noticed my Tourette’s because I have learned to hide it very well in my body movements and talking, etc. But it’s there. And I don’t mind if you notice or say something about it. Please, talk about it if you are curious, or for any reason, really. Just don’t use it to make fun of me or anyone else that has TS. I am bigger and meaner and stronger than most of you…haha. And you certainly don’t want to see what Tourette’s looks like angry, right?! Think Hulk + Tasmanian devil. HAHA – just kidding. Sort of. Or am I?! hmmm…

Ok, very long post, I know. But here is the conclusion…

When I think of my children having Tourette’s and knowing they will struggle with some of the same things I have, makes me sorrowful. I love my children and wish they didn’t have to experience this kind of difficulty – especially one that might make them targets of ridicule and heart-ache and even physical pain. It makes me very emotional to think about that. But, I am confident I can help them through it and see the beauty of the harmony of opposites, because, there are amazing things that can come with Tourette’s. The same things that make me have difficulty can also give me great advantage and will give my children gifts that are amazing! Perhaps I will address this in my next post.

For now, I embrace my Tourette’s and while it brings plenty of challenges, I keep on moving forward, I pick myself up when I need to, and I keep on ticking – literally.

THANKS to the National Tourette Syndrome Association for having information readily available to find and share!
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