Ticcing Away: Tourette Syndrome

“Tourette Kids”

Sometimes we are happy
Sometimes we are sad
Sometimes we get teased
Sometimes we get mad
Although we seem different
When tics appear each day
Remember this disease chose us
And no the other way
So if we jerk, or yell, or swear
Please try not to forget
It isn’t us doing it
But a disease called Tourette

----Jason Valencia----
Touretter
1986, 10 years old

Living with Tourette syndrome gives a deeper insight to the highly misunderstood and understated disease, Gilles de la Tourette syndrome. The book delves into the origin of the disease, the symptoms, the medications, and the treatments. Then the author gives thoughtful advice, a guide, so to speak, for parents, relatives, loved ones, and sufferers of Tourette. The author Elaine Fantle Shimberg, is the mother of three children with Tourette Syndrome and a board member of the Tourette Association. She has authored twelve books and gives lectures around the world about mothering three Touretters.
To understand the disease, you must know its interesting history. In 1885, the French physician, Dr. Georges Albert Eduoard Brutes Gilles de la Tourette, first suggested that the disease’s symptoms were part of a distinct condition different from other movement disorders. (Shimberg, 1995 p.25) Tourette studied several patients he believed to have the disorder. These studies included a French noblewoman who used to interject obscenities during conversation. (This is also known as coprolalia,) Tourette came to the conclusion that TS was hereditary, (Shimberg, 1995, P.67) that the disorder did not have any intellectual or psychological deterioration, (Shimberg, 1995, p.69) and he also correctly identified the childhood onset of the disease.
For decades after Tourette’s discovery, Tourette Syndrome was believed to b4e a psychological disorder. With the twentieth century and the age of Freud’s psychoanalysis, new ideas and theories about Tourette Syndrome came a dime a dozen. Hysteria, schizophrenia, mental instability, sexual dysfunction, narcissistic disorder, and poor family dynamics were just a few of the speculated causes of that era. (Shimberg, 1995, p.66) It wasn’t until the mid 1960’s that researchers work helped our present understanding of Tourette came to be. It was finally acknowledged that the disorder was biologically base...

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... never given a second thought
To take a deeper look at me?

If you look beyond my physical traits
And see the person inside,

You’ll see how tough my struggle is
Fighting something I am not able to hide.

Maybe I spit. Maybe I swear,
Or constantly tap my hand.

How do I explain these things to you,
When I myself don’t understand?

Yes, it hurts me deep inside
When I hear the taunting words you say.

And you, my friend, may need me near
When you get judged one day.

Understand that I’m not crazy
I’m not trying to make you mad.

Understand I have unique problems
That I’ll probably always have.

I don’t expect you to treat me
Differently, nor cut me lots of slack,

The only thing I ask of you is
Please— Don’t turn your back.

1993, age 17

References

American Psychiatric Association: Diagnostic and Statistical Manual IV Washington D.C., 1994

American Journal of Psychology, “Premonitory Urges in TS”, 150:1, Jan. 93

Dreher, Nancy. “What is Tourette?” Current Health, Oct. 1996, V.23, p.21

Shimberg, Elaine Fantle. Living with Tourette, NY, NY. 1995, Fireside.

The New Yorker, “ Moma when its jerking” , April 1995,V.71 p.34-36