Pamphlet about Tourette Syndrome

 

Description: 

Light blue tri-fold-out pamphlet with questions and answers about Tourette Syndrome from 1991.  

Story:

My earliest memory of a motor tic was in my high school English class.  My head seemed to move on it’s own and I went from looking at my textbook to looking at the clock on the wall.  It was weird.  Did I really want to look at the clock?  I’d move my head slowly back to my book and be thinking about it, trying to decipher if I had chosen to look at the clock or if it just happened on it’s own.  Then I’d do it again, but I was thinking about it, so that was my conscious choice...wasn’t it?  Tourette is weird that way.  It is like it is it’s own impish thing, knows when it’s being talked about, so as I write this I’m having symptoms that I have not experienced in some time.  Anyway it was a very infrequent thing, and I didn’t give it much regard.  Then I started my sophomore year in college.  I was taking some intensive courses.  I was writing long letters to Mr. Gaba who was in basic training and there I sat on my college bed trying to read Candide by Voltaire and my head kept turning to the side and I kept losing my place.  It came to be an ongoing issue with reading.  It didn’t hurt, it was just annoying and more persistent than my sudden odd high school clock watching.  My roommate who was a nursing student noticed it.  I looked up a few things in some medical books in the library, figured out what I was doing was called a tic. 

Finally I went to see the campus doctor.  There is this Loony Toon cartoon of Tweety taking a Jekyll and Hyde formula. Every time Sylvester looked at Tweety he looked normal, but then Sylvester turns his back and Tweety becomes a monster.  My visit to the campus doctor reminded me of that cartoon.  Every time the guy looked at me I was perfectly still.  He’d look down to make a few notes and my head would tic.  He checked out what he could about balance and interviewed me and suggested that I see a neurologist.  I didn’t have a car and know what to do, so I called home, and Mom set things up for me to visit a doctor during spring break in North Dakota. 

I was tested for various things. Tourettes is a diagnosis of elimination.  If no other cause can be found, it must be.  Well it wasn’t Tourettes, I was told it was transient tic syndrome.  If symptoms went on past a year it would be chronic tic syndrome.  In reading up on it as best I could in the days of pre-internet, the only difference between chronic tic syndrome and Tourettes is that Tourettes has both physical and verbal tics.  I had no verbal tics.  So life went on.  I had no interest in trying to treat my condition with medication.  My tics, while at the time annoying and bothersome, were not debilitative, and knowing some girlfriends with epilepsy and how the medications messed up so many other things and had to be counteracted with other meds, I reasoned that any medication that would help the tics would cause me other problems.  Things stayed pretty much as is.  Got married, graduated, eventually ended up working at Todd Wehr Library at the Medical College of Wisconsin where I did a second shift that ended at midnight five days a week.  In was on a drive home that I started to have verbal tics.  A really loud ear piercing "HA!” I could feel it coming, and couldn’t stop it.  Well that cleared it up.  I have Tourette syndrome. '

What I have learned over the years is the number one thing I can do to reduce my tics is to make sure I get enough sleep at night.  I’ve had a few times when I was prescribed medications for other things and found my tics got much worse.  If it was a direct cause of the medication or simply that the meds messed up my sleep cycle I can’t say, but in both cases I simply stopped taking the meds and things got better.  Now things are pretty stable.  The only time I really have any issues is when I’m under a lot of stress (another reason why I’m a librarian and not a high school history teacher) or when I am visiting someone who has tics.  If we are together and one person tics and the other sees it...well, like I said, I’ve been ticking like a clock as I write this.  It’s an odd compulsive condition.  It is somehow related to obsessive compulsive disorder and I have some of those tendencies too, though much less than before.  I drove my roommate in college crazy with not being able to go to sleep unless all doors and drawers were perfectly closed and latched.  This I got over after getting married, and living in old houses where almost no internal doors latch, and in the case of the bedroom door it needing to be unlatched so the cat can get in and out during the night. 

Anyway, I don’t remember the doctor's name, thought I think he was a graduate of the Medical College of Wisconsin where I ended up working for a bit.  He gave me that pamphlet and it was in his office when he wasn’t looking at me, and was making notes, that my mother first noticed what I had been complaining about, because prior to that she had never seen me tic and had set up all the appointments not quite understanding what was going on.   My mother upon learning that my condition was somehow hereditary felt terrible and perhaps guilty that I should suffer with such an odd condition.  I assured her that unlike with the genetic time bombs of heart disease, diabetes, & cancer, Tourettes didn’t hurt and would never kill me.  I’m glad it didn't become a real issue until college, when I was much more self confident, and did not have to deal with it around people who would tease me about it.  

Years later, I went to a doctor in Fort Wayne and a nurse was taking my medical history. I mentioned it, and she stopped and looked at me and seemed choked up.  Turns out her teen daughter had Tourettes and she was very concerned about her.  I explained that my symptoms were relatively mild and I was never medicated for them.   The woman said, “But here you are, a married woman with a college degree, and you’re OK.”  I didn't quite know what to make of that exchange.  I never thought of myself as a positive role model, but this woman found some comfort in my ordinary life.