Saturday, April 21, 2012


Touretterism: (noun) something that I say as a Touretter to somebody who is neurotypical that sounds as though I mean one thing, but when in reality I mean something completely different.

An example of a Touretterism: "I’m just really tired today."
What I’m really saying: "I may be tired, but actually there is so much going on in my brain right now that I can’t keep a conversation straight in my head. Also, I probably look like hell from ticcing all day yesterday, giving the illusion of being tired.  Mentally, I'm exhausted; I can't make my brain keep up with my body.  Maybe I slept 8 or more hours last night, but my brain and body are so tired I could take a nap right now."

"I'm fine."
Translation: "I’m anything but; however, for me to explain what’s wrong with me will take too much time and energy."
Alternate Translation: "I am fine.  This is my "normal".  This is what my life is like all the time.  I know I may not look fine, but trust me I really am."
(By the way, this line is most likely me begging you to stop the conversation; just because I have Tourette's doesn't mean we have to talk about it.)

"There’s just a lot of people here right now."
Translation: "Could that asshole be standing any closer to me?"   
Alternate translation: "I’m about to use you as a human shield to protect innocent strangers from errant tics. Get ready."
Alternate translation: "Wow!  Look at all these people I'm about to get to pay attention to me!"

"I had a rough night last night," or "I had trouble sleeping last night."
Translation: "I ticced so hard last night I really hurt myself."   
Alternate translation: "I ticced so hard last night I fell out of bed or I couldn’t sleep." 
Alternate translation: "I slept perfectly fine last night, I just look like hell from 2 weeks of sleepless nights prior to last night."

"I’m just under a lot of stress right now."
Translation: "You dimwit, Tourette’s isn’t a mood ring. Just because I’m ticcing doesn’t mean anything is wrong. But if I deny it, you will disagree with me as if I don’t know my own body. So yes, I’m "stressed"."

"Whoops! My words just won’t come out right today."
Translation: "Oh crap. I hit my head a lot harder than I thought yesterday."
(I have semi-permanent mild aphasia; all it takes is one good head-bang or migraine or no sleep to bring it out.  The more tired I am, the worse it gets.  My kids I teach looooove correcting me, "Ms Shaw, I think you meant...")

"Noise? What noise?"
Translation: "No seriously. What noise? Why do you think it was me?" : )

Monday, April 16, 2012

Fund-A-Dog Weekend

As many of you know – who am I kidding – as all 20 of you know who read my blog know, this past weekend was the Fund-A-Dog Dinner and Fundraising Concert. Through donations at the event, ticket sales, raffle tickets, the bake sale, the silent auction and from donations from people who could not attend we raised…



The weekend kicked off with a very personal search at the airport as I tried to fly home. I hate flying. I have never liked it, but when you throw Tourette’s into the mix, it’s unbearable. Simply setting foot in the airport sets me off, even if I’m picking somebody up and I’m not going anywhere near security or an airplane, I start ticcing. It’s a great Pavlovian response. Not. I know what I look like when I’m ticcing; I’m not oblivious. I know that the TSA is supposed to look for suspicious looking individuals; that is their job. However, when I’m stuck in a very crowded security line for 30 minutes before it’s even my turn to be screened, I have no more control over my body. I was barely in the line when an agent asked me if I was okay; he got the standard response, “I’m fine. I have Tourette’s.” He goes, “Oh,” and talks to his other TSA friend observing the same line, and then goes right back to his spot. Foolishly, I thought he might be informing the other agent of what I had said so that he would also understand that I have a disability. But alas, this was not the case. The other agent too, asked me if I was okay when I got closer to the scanning point, and again, he got the same answer. I stood still for my requisite 10 seconds in the body scanner, or as still as I ever get, and then waited for them to clear me. Imagine my surprise when I found out I was the lucky recipient of the chance for the TSA to repack my bags and to frisk me.

It was humiliating. I have a disability; I can’t control my body anymore than a neurotypical person can control a cough or a sneeze. Even though both agents had been informed of my disability, they felt as though I was suspicious enough to warrant a search. Every article of clothing I had packed was taken out, unfolded, and examined. Every piece of electronics I had was swabbed for explosive materials. My books were both turned upside down and thumbed through. Everything was unpacked and laid out on the table. Then, to add insult to injury, I was the recipient of an all-to-personal body search, and then the gloves used on me were swabbed as well. Then entire time I was ticcing to the point of extreme pain while the agents pretended I was not there or asked me benign questions. All I wanted to ask them was “Why me?” Why was I selected to be screened so “thoroughly”. I know what I look like when I tic, but I also know that I dress conservatively, I don’t wear makeup or jewelry, nothing in my bag would have triggered any sort of an alarm. I’m about as inconspicuous as a person could get when it comes to looks. Then only thing that sets me apart from other people is the tics. Which leads me to believe that that was the only reason I was pulled aside.

Of course, I wasn’t stupid enough to actually ask them. By the time they were finished searching my worldly possessions, I had 10 minutes to get from security to my gate and I was the last person on the flight. I know that the TSA has the right to screen anybody and everybody they chose to; and I guess I could have been lying about having Tourette’s as far as they were concerned. But really, wouldn’t a drug mule have thought of a better excuse??

After all of that fun, the weekend went off without any problems.  The dinner was very successful; the choir sounded great, we sold lots of raffle tickets, and the dinner was great!  I was really excited about getting the chance to share my experiences with that many people and to hopefully spread awareness about Tourette's.  Jump to access my speech from the weekend.

A tic-free moment during my speech :)

Monday, April 9, 2012


I posted last week on facebook that I was going to Seattle this past weekend. One of the joys of living with a neurological disability is that you get to go to doctors. Doctors upon doctors upon even more doctors. And when you live with a neurological disability like mine, you get to hear those lovely words, “I have nothing left to offer you.” Good fun, right?

You get used to it though, and after you’ve done as much research as I have, a doctor giving you any options you haven’t tried yet is a surprise. Hearing them tell you they have no other options however, is not a surprise. In the last six years I have been to four doctors specifically for my Tourette’s; the pediatric neurologist who diagnosed me, the psychiatrist they referred me to, the movement disorder specialist they referred me to, and the pediatric neurologist I sought out on my own this past year. Between those four doctors and my own internet research, I have tried seven different medications, acupuncture, a homeopathic remedy, and I receive chiropractic care. I also employ Comprehensive Behavioral Intervention for Tics (CBIT) techniques even though I have never seen anybody to learn CBIT; I taught myself.

Not a single medication or treatment has worked. The chiropractic care helps repair some of the damage from the tics and keeps my body moving in the way that it is supposed to, and the therapeutic massage I get occasionally at the chiropractor helps my muscles from tightening up to the point that my joints don’t want to move. The CBIT techniques I use help me recognize the tic “urges” before the tic happens and the skills I’ve learned over the last six years help me suppress the tics when I need to or transfer them to a more appropriate outlet (ie. swapping head banging for hand tremors; a lot less noticeable).

The neurologist in Seattle offered me a few experimental options to try. I declined them all. Due to my medical history and leeriness of medications in general, I chose not to take a new medication he offered me. The medication was just approved by the FDA in the last year, though it was used in Canada previously. To even get the medication, I would have to fill out forms and have it shipped from the supplier directly to my apartment. Then there were a lot of side effects. No thank you. He also offered to refer me to an adult movement disorder specialist in the same medical complex who may or may not have decided I would be a candidate for botox injections. From how he explained it however, I would most likely not be a candidate. The botox is completely experimental and it is used mostly for tics involving small, discrete muscle groups. Like a blinking tic. While I have tics involving those types of muscle groups, they don’t bother me that much. The ones that are more affective involve big muscle groups; my neck, my calves, my upper arms, etc. I struggle with how botox would work in such a large muscle area and from my understanding; the botox would only make it harder for your body to tic. It wouldn’t actually make the tic urge go away; and I know that sometimes wanting to tic and not being able to can be more painful than just ticcing.

The doctor also asked me if I wanted to try some of the medications I had taken previously; but since I had already been down those roads before with zero success, I opted not to. I was not surprised when this doctor told me that he was out of options to try. Thankfully, surgery still stays off the table due to the doctor’s observations, not my objections. It is still completely experimental although the neurologist did say that they know where to poke now, whereas before they pretty much went in blind and saw what happened.

Tourette Syndrome is funny; I would rather live with tics at the level I currently do for the rest of my life then have my tics fluctuate with good weeks/months and bad. When I have good periods of time, and I have had them, I lose all of the coping strategies and the techniques I had to suppress my tics for any length of time. My freshman year of college I was virtually tic free; nobody I met then knew I had Tourette’s unless I told them. About October of my sophomore year, my tics came back with a vengeance. I won’t ever really know why they came back, if there was a catalyst, or if it was just bad luck, but it was like being diagnosed all over again. I had no coping strategies because I hadn’t had to use them in a year. I had been able to live a whole year without being the center of attention and without the constant hyper-vigilance. It was during this time of relearning how to control my body that the coprolalia started. I would rather live every day of my life at hyper-vigilance and having to control my body, than grow lax during periods of not having to control my mind. It makes everyday life easier, and it makes it harder for people who know me during those down periods to pretend like I don’t tic or that it isn’t as severe as I claim it to be (it happens).

The neurologist this time also asked me the litany of depression/mood questions. Put yourself in my shoes; it would be quite easy to grow frustrated at your life and continual frustration could lead to mood disorders. At this point in living with my disability though, I have accepted it. It was a long long process; looking back at the last six years I recognize what I was going through as the grieving process. I hadn’t lost anybody, but I had lost my sense of self. The person who I had thought I would become was gone. But I like the person I became; I am tougher and stronger than I could have ever been before. Which is why I am not embarrassed by my disability. I am not embarrassed by something that is out of my control.

And now I have gone round and round, talking myself into a whole slew of tangents. The neurologist is swapping my migraine medication because I did not like the side effects and this is the first time in four years I have been off of it. The meds also helped me sleep, so I’ve spent the last few days struggling to fall asleep and waking up way too early. As a result, I’m struggling a bit to stay focused and on topic. Clearly.

In completely unrelated news, I’m flying down to California Thursday for the fundraising dinner this weekend and I’m really excited! I (finally) finished the afghan I’m going to raffle off which means that my work for the event is done. Thanks to everybody who has RSVP’d or is donating their time or something for the event!