Posted in Did you know?

Tourette Syndrome and misconceptions

Have you ever had the urge to squeeze your eyes shut real hard? Ever had the habit of twirling a lock of hair?  Ever have to put a lot of effort to NOT use profanity? Come on, before your kids were born?  In high school perhaps, it got you a detention or two or a smack at home?   Ever had the urge to clench your teeth together real hard?   What about smelling your food before taking each bite…every done that when you were younger perhaps? Did you ever bite your finger nails?  Do you still do it?    What about that annoying mosquito bite you got at the bonfire last night…do want to scratch it?  Ever have your snow suit on, scarf, tuque, boots and then notice you got this annoying itch in the middle of your back. What do you do?

I remember when I was a child…all this was pretty much under 10 years old. I used to clench my teeth so tightly my jaw and neck hurt.  I used to get this sudden urge and after doing it I felt a slight relief.  I gradually forced myself to stop as I was afraid of wearing my teeth down. I was probably right too. But I had that option to do that.

I remember when I was pretty young…probably 7 or 8 and I used to smell almost each spoonful of food that I ate.  My grandmother noticed that one time and made a mocking remark, “Hey, cut that out!  You look like a dog who always has to smell his food before eating.”  Hmmm, well besides turning beet red, feeling totally humiliated (my grandmother had a border at her dinner table) and I was scared silly she would tell my mom and dad of this little habit I had just started    {My dad’s reaction scared me the most}…so I slowly  forced myself to bring my food smelling to a hault.  But I had that option to do that.

I do remember my grandson doing that with his food for about a year when he was about 6.  It took me all those years to realize it was not uncommon for children but it was unusual for those who could NOT stop.

I remember going through a time that lasted a bit longer…maybe 12 or older.  I used to squeeze my eyes shut real tight. The completed act would give me a brief sense of relief…until family caught me doing it and I gradually (it took years) stopped.  I still will squeeze my eyes today and feel that sense of relief and am so careful not to do it often for fear my habit will come backBut I had that option to do that.

I used to bit my nails and my cuticles and the skin on my fingers.  Okay, gross, I know, but I did not even notice I was doing it most of the time.  One day when I was about 13 a family friend whom I looked up, asked me, “What are you going to do the day you are engaged and you want to show off that gorgeous diamond ring?”  I thought about that and it took me months to curb that habit but I eventually kicked that habit it. But I had that option to do that.

My father in law used to swear like a trooper ALL the time.  He swore whenhe was happy, when he was angry and when he was excited or frustrated.  And believe me, in Canadian French, you have a WHOLE LOT of CHOICES in that vocabulary…all religious profanity.  He was and still IS a teddy bear.  Not a mean bone in his body but it was a habit…but guess what?  When he went to church or was in public he was able to suppress that habit or say it inaudibly under his breath. But  he had that option to do that.

My dad used to absentmindedly smooth his thumbnail over his upper lip when reading with great concentration.  I  also started that and yep, I still do it. I don’t intend to quit but choose to do that when reading, watching television or listening to music quietly…oh, yeah, even when driving long distances.  It is soothing.  I suppose I could quit completelyI would still have that option to work on it and stop though, now wouldn’t I?

I started twirling my hair when I was in school.  I was probably bored out of my mind to start with but my hair was short, so I would reach for the longest strand in my bang or at the top of my head and twirl and twirl and twirl. My hair is quite long now and I still do it and I do NOT want to stop.  I however, am in the habit of doing it all the time…yep, even when I am driving in the car…it’s easy with long hair!  It’s not my fault. I find it soothing.  Perhaps it started out of boredom, restlessness or nervousness (as a child life did get pretty tense sometimes) but nonetheless I find it soothing.  That is why I never go for those tight curly hairstyles because I like the feel of the softness of my hair.  Contrary to what experts say…I am not sending off messages to men I am with…nope, it has nothing to do with them.  I am not flirting…I just like the feel of the softness.

I am sure you all have a few little quirky habits that you try to curtail and do only in private.  Don’t shake your head there…you do too!

Where am I going with this?  To talk a little about Tourette Syndrome…that’s where I am going.

“Tourette Syndrome (TS) is a neurological disorder characterized by tics: involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way. The cause has not been established and as yet there is no cure.

Symptoms

The most common first symptom is a facial tic, such as rapidly blinking eyes or twitches of the mouth. However, involuntary sounds, such as throat clearing and sniffing, or tics of the limbs may be the initial signs. For some, the disorder begins abruptly with multiple symptoms of movements and sounds….” Read more http://www.tourette.ca/learn.php

Yesterday The Tourette Syndrome Foundation of Canada was using Twitter to help the public see first hand what it was like to live with the condition. You were to Surrender Your Say to Twitter and for 24 hours there would be tweets in your name that YOU have no control over some may be offensive.   It’s an exercise to mimic the involuntary and vocal outbursts that people with Tourette Syndrome have, known as tics.

I surrendered and the deadline to experience this is 17:00 EST today.   But by the time I complete this blog I think we may be past the deadline but I am typing as fast as I can.  This is my first day off of 3 and I am a bit slow to start.  http://tourette.ca/blogs/blog/2013/06/13/surrender-your-say-is-coming/surrender_your_say/ 

There is a lot of misconception on this condition by those who have just been diagnosed and by those who do not have it.  Here are a few myths Shelby Crockett, a paralegal, has published on the websites of The New Jersey Center for Tourette syndrome & Associated Disorders. http://www.njcts.org/tsparents/top-10-tourette-syndrome-myths

  1. More swearing – In reality, only a small percentage of those with Tourette’s Syndrome have obscenity specific outbursts.

  2. They are mentally challenged – Tourette Syndrome is not an Intellectual Deficiency.    It is a neurological disorder that is categorized by involuntary movement and speech tics.

  3. It is extremely rare – It is estimated that every 1 in 100 children suffers from Tourette Syndrome.  Many of them go undiagnosed and misunderstood.

  4. Tourette Syndrome can be managed with concentration – Because TS stems from a chemical imbalance in the brain, there is no voluntary aspect to it whatsoever.

  5. Only caucasians can get Tourette Syndrome – As with most diseases and disorders, TS does not discriminate.

  6. TS is debilitating – Most people with Tourette Syndrome can go on to lead rich, fulfilling lives and take part in just about any activity as anyone else, especially if they are cared for properly. Listen to the interview below with a friend and former colleague, Virginia Middleton and she will share her experience living with TS.

  7. Tourette Syndrome stems from psychological trauma – This was the prevailing thought but now, sophisticated imaging technology shows us that it is a neurological disorder.

  8. Those with TS can’t do jobs with fine motor functions – Another false truth, famous Canadian surgeon Dr. Matt Doran was able to do complex procedures even though he had Tourette Syndrome.

  9. They can’t be athletes – How far can someone with the involuntary tics associated with TS go in the sports world?  For Jim Eisenreich, all the way to the World Series of Major League Baseball in 1997.

  10. It gets worse as you get older – While some neurological disorders get worse with age, it is not generally so with Tourette Syndrome.  In fact, many who suffer from it go through the worst during adolescence and can even outgrow their tics in adulthood.

So that is why I made my list of habits you and I may have had or still do but are able to “keep them at bay”. TS is different. As Virginia Middleton states in her interview, it can taper off as you get older.  Yes, there are milder cases.  And I am sure it can be difficult for those who have more pronounced symptoms.  It would make for find “the right fit” for a job for instance as Virginia shares on CBC.

Virginia Middleton’s Interview on CBC  http://www.youtube.com/watch?v=sDfNKNEjV7g

Written interview with Virginia Middleton http://www.cbc.ca/news/canada/newfoundland-labrador/story/2013/06/19/nl-tourette-syndome-twitter-619.html

It is not an all or nothing condition…just like any other neurological or psychiatric disorder…the Tourette Foundation has launched an excellent exercise via Twitter, even if it is just to give the general public a brief glimpse of this condition.

Here are some interesting resources if would like  to read more on this subject.

 Twitter campaign with TS Foundation http://www.surrenderyoursay.com/#0

http://tourette.ca/blogs/blog/tag/tourette-syndrome/

http://tourette.ca/blogs/

http://www.ninds.nih.gov/disorders/tourette/detail_tourette.htm#220483231

http://news.bbc.co.uk/2/hi/uk_news/magazine/8070740.stm

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Author:

A little bit about moi: I am a mom, a nana, a sister, a woman, a friend, a human being…a youth counsellor, Family Life Educator. I have been working in the helping profession for over 25 years and volunteered in various capacities from youths to seniors. Tournesol is my nom de plume for haiku and other Japanese form poetry here at Tournesoldansunjardin http://cheryllynnroberts.wordpress.com I hope you enjoy reading through my daily waka. I also have another blog "Stop the Stigma" where I may stand on my soapbox now and then and hope it will become a place to drop in and share or comment on issues important to you. In that vein this could be a great way to learn from each other. http://stigmahursteveryone.wordpress.com Namaste!

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