Educate

Tourette Syndrome (TS or Tourettes) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics.

God! This topic again? Can you tolerate another blog post about mental health? About Tourette Syndrome? About oddity? About me?

It’s TS Awareness Month, therefore I feel the need to hammer you (again) with messages about Tourettes. It’s on my mind; even if this wasn’t THE MONTH, it still would be. I’m messing with my meds. How many times have I written that? Every six months or so, I make a change to the cocktail of pills I take to live a comfortable life.

Calling my medications “my meds” makes me feel hard-core. Serious. Mentally ill. I take my meds to even out my moods. They’re integral to my happiness. Some of you, I know, think taking pills is cheating. Not playing the hand I was dealt. Turning me into someone else.

Well, maybe they are.

IMG_0140I take a medication called Risperidone. Google it: you’ll find that it’s an anti-psychotic given to schizophrenics. No, I’m not psychotic and I’m not schizophrenic. As it happens, there are no drugs made specifically for Tourettes. All possible TS prescriptions are made for other disorders, but over time, someone realized they work on Tourettes, too.

I’m on a seesaw right now. A higher dose leaves me feeling mildly depressed, unmotivated, a little sad. Not paralyzed, but unnecessarily bummed out. I Googled this too. Apparently, depression on Risperidone only happens to people with Tourettes—it doesn’t seem to bother the schizophrenics. And a lower dose doesn’t fully control my tics, my involuntary movements and sounds.

In honor of Tourette Syndrome Awareness Month, I’ve lowered my dose. It helps people be aware that I have Tourettes. Last week at work, I was coughing. This is something that happens when I feel some stress. And work is a bit stressful right now. A cough or two, then nothing for fifteen seconds… then another three… and so on. I guess this was going on for quite a while. My co-worker Jess asked if I was OK. “You’ve been coughing a lot over the past week or so.”

Have I? I didn’t notice. “I have a neurological condition that makes me cough,” I said.

Jess stared at me for five seconds. “I can’t tell if your joking.” So now I’m out. My part of Tourette Syndrome Awareness Month: I just made them aware at work.

Tics are weird. Here’s how they work.

Last week, I headed out for my morning walk. This year, walking has become an important part of my day. It’s when I truly let my mind wander. Sometimes I sing a song, sometimes I solve a problem, sometimes I write a story in my head. Lately, I’ve been chewing gum while I walk. If I don’t, I scrape my front teeth together the whole time. I don’t want to, I just do it. On this particular morning I forgot my gum. I began to challenge myself. How far could I walk without scraping my teeth? Pretty far. As long as I concentrate, I can make myself not scrape my teeth.

After a few minutes, I realized that instead of scraping my teeth, I was flipping my tongue over. Twisting it as far as I could. Straining the muscle in the back of my mouth where my tongue connects to the side. This feels really good. So good, now I have to do it. In fact, for the past five minutes, since I’ve been thinking about it, I’ve been tongue-twisting non-stop.

Susan wonders if I can just accept the tics. The depression impacts my life. It hurts my relationships, my performance at work, the mood of my family. But the tics hurt no one. The only person bothered by them is me. If I can just come to peace with them, then everyone’s happy.

My recent trade, depression for tics, was something I considered for a long time. Eventually, I could no longer figure out why I was resisting the switch. Depression, even mild depression, sucks.

As a person with active Tourettes tics, I feel odd–there’s no question about it. At times it drives me nuts. Having Tourettes is like having poison ivy, and trying not to scratch. The tics, regardless of whether I’m conscious of them, are constantly with me. At times, like with Jess, they catch someone else’s attention, and I need to explain what’s going on.

I’ve been an avid educator for the past few weeks: Blogging, Facebooking, Tweeting informative messages about Tourettes, I’m truly embracing TS Awareness Month this year. And with less Risperidone in my system, it’s time I start embracing Tourettes as well.  

23 thoughts on “Educate

  1. I was sitting in class after a crazy night out and I was determined to stay awake. Every time I started to nod I shook myself awake, and managed to stay awake the whole class. Unfortunately after class my friend pulled me aside and was like “What the fuck were you doing?” He told me I was sitting near a guy with Tourettes who was ticking periodically and I was doing so with similar timing and apparently a lot of people in the class were giving each other looks throughout. Pure Seinfeld moment. They all thought I must be doing some kind of awful impression of him or something.

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  2. Thank you for sharing your story Jeff! I would love to share this on my Blog’s Facebook Page and help you extend your Tourettes education! Happy Memorial Day weekend to you!

    Liked by 1 person

      • We don’t… Last weekend was our Canadian May Long Weekend (Victoria Day) …. But my husband works in the U.S. so he has tomorrow off- which is nice because the kids are in school so he and I get a vacation day together! I love when this happens- it is rare we can get time in just the two of us without running off somewhere for a week or a weekend!

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      • I’ll follow you back. I don’t really tweet anything except my posts tweet out automatically. When you said (months ago) that you were setting up a facebook page, I I thought that sounded like a good idea. I did that and wound up with a total of 6 followers. I’m truly social media challenged.

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  3. I don’t think of you as the TS poster child, just a friend who has TS. And I never noticed a lot of you “tics” or idiosyncrasies until you mentioned them. (Maybe some of them, like not recognizing people you know, but maybe this is another DX.) Just part of what makes Jeff, Jeff. I don’t know if I’d want to deal with the depression side effect on top of all the depressing things already out there. I applaud your writing about your (mis?)adventures.

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    • Thanks Blair. BTW tell Katie when she talked with me the other night I had no idea who she was. I’m sure I came off rude. After she left I asked Susan and she rolled her eyes and said “Blair’s wife.”

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  4. I can empathize a little with your experience. I’ve had situations where it was hard to find the correct antibiotic or the effective physical therapy. It can be frustrating, though certainly not at the level you’ve had to endure.

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    • Modern medicine at times drives me nuts. If I had unlimited time, resources and energy, I think I’d be heavily invested in holistic improvements for my Tourettes and mental health. But the last time I tried to make sweeping changes to my diet it was just too hard to sustain while living life as a parent.

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  5. The med tightrope. enough, not too much, and which balance of symptoms is better for me? And as you are recognizing, sometimes it changes. Me, I suspect I’d go for more tics and less depression, and I’m grateful I’ve not had to make that particular choice. We each get our own platter of challenges.

    Good writing and good information. I learn a bit more with each post. My awareness is growing!

    Liked by 1 person

  6. The medicine cocktail – when I used to work as a social worker I would take people to meet with their Psychiatrist and the discussion would always be on their “cocktail.” I always felt bad for a lot of individuals who had a ton of side effects. Some would stop their meds because of them and then a whole new gamut of problems would arise. But the side effects made the med a no go. Thanks again for continuing to share – very informative info on TS!

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  7. I think it’s a very brave, absolutely essential thing to talk about things like this. I don’t have TS so reading items like this helps me understand how it effects someone. Much more so than a quick Google search. Also, I’ve been sitting here trying to figure it how to duplicate your tongue twist. Not sure I’m doing it right.

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