Things you learn when you have Tourette’s

This is not a “feel sorry for me” post, it’s to help others understand Tourette’s Syndrome from the vantage point of someone who has it.  Tourette’s is great teacher that continues to provide insights and develop inner strengths I wouldn’t have achieved without it.

Have you found your strengths and learned to live with your weaknesses, too?

I’d love to hear about your experiences.

Tourette Syndrome is a reoccurring urge to make certain sounds or movements.  Doctor’s think it’s a glitch in the basal gaglia.

There should be a fitness program called Tourettersize. When your body starts a new tic, that area is sore for days, just like doing repetitive movements at a gym.

Before there were neurologists specializing in Tourette’s, there were doctors who made the problem worse. 

Symptoms usually appear between the ages of 4 and 7.  I don’t remember when my symptoms began, just my mother’s quest to find a cure.

Among the false diagnoses were:

• St. Vitis Dance (Sydenham’s chorea — jerky, uncoordinated movements of the face, feet, and hands, and sometimes the limbs).  This was treated with “nerve medicine” aka a liquid tranquilizer that did nothing to stop the Tourette’s.  However, my sister would sneak into the kitchen and take it to stop her menstrual cramps.
• Epilepsy.   After the experience with “nerve medicine,” my mother respectfully declined the use of Depakote.
• “She just wants attention.”  Among the recommendations:  Slap her every time she does it, or make her stare into the mirror to see how ugly it looks.  Pain and stress both increase the tic’s and worsen the symptoms.  

Tourette’s is hereditary.  I have it, my son has it, and so does my granddaughter.  I was diagnosed at the same time as my son circa 1981. By the time my granddaughter was diagnosed, the doctor my son took her to knew exactly what it was, and so did my granddaughters teachers.   

There are ways to circumvent it in social situations; like digging your fingernails into your thigh, squeezing the arms of a chair, or raising your legs in a chair underneath a conference room table and switching which leg is going to hold up the other one.

People with Tourette’s often have artistic and creative talents:  My son speaks several languages, writes poetry, and plays musical instruments (the oboe, clarinet, piano, guitar, saxophone…).  I write, and used to play piano, but the language gene skipped a few generations.

It isn’t common:   3-to-6 out of every 1,000 children have Tourette’s. Contrary to what I was told, Tourette’s doesn’t always get better.  From my experience, it gets worse as you age.

People think it’s a license to curse, but only 10% of people have coprolalia.

In the movie “What About Bob?” he said that Tourette’s was worse than death.  The 5 husbands I’ve had in my lifetime might disagree.  ☺

One of the tics I have is a movement of my left arm.  The forearms snaps upward toward the left shoulder.

If, by chance, there’s a computer mouse in my hand, it takes a dive toward the mousepad.  I don’t register that it’s happening, so on occasion the mouse ends up flying across the room. The only mouse that survives on my desk longer than a week is the Logitech wireless variety.

No, this isn’t an advertisement.  For a writer with Tourette’s, it’s a matter of survival knowing there’s a mouse that can withstand that kind of abuse for a year.

I’ve hear this question many times:  “Why don’t you just stop doing it?”

• Imagine you’re at a fancy restaurant and your head starts to itch.  The itch becomes so overwhelming that you can’t concentrate on what your date/business colleague/family member/friend is saying.  If you scratch your head, people are going to laugh at you or, worse yet, move away. You can go into a bathroom stall to scratch that itch, then return to the table.

Tourette’s is like a pesky itch demanding to be scratched — every minute, hour, and day of your life.  The feeling is only eased by giving expression to a combination of motions (like grimaces and flinging your arm), grunts, puffing, and (on occasion) expletive-deleted’s.

The Tourette’s all-you-can-tic buffet often comes with side orders; like OCD, ADHD, Autism Spectrum Disorder, Oppositional Defiance Disorder, learning disabilities, memory deficits, Panic Disorder, social skills deficits, visual-perceptual motor disabilities and epilepsy.

It takes great effort to suppress a Tic that doesn’t want to take no for an answer.  When a person is doing an activity that takes intense focus (like surgery, playing a musical instrument, juggling…) the tics can take a back seat for a while, but…

When the tics return, it’s like they were stored up,  Ignore the urge and when the pattern of tics finally emerge, they come in volleys like machine gun bullets, so you’d better be in a bathroom stall or a locked room when it happens. 

I found this meme at a motivational website:

Find your strengths.  Learn from your weaknesses, and then help others with your knowledge. 

As for my future?  I’m going to enjoy each day given to me, and I’ll be thankful for the gift of life until the day I take my last breath. 

There is power in understanding, and every day we have in this world carries with it the potential to learn something new.