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Mom Confessions Mom Confessions

Living with Tourette's. Ask me anything!

Posted by on Mar. 31, 2014 at 4:04 PM
  • 141 Replies
3 moms liked this
I posted several years ago about having Tourette's Syndrome. At the time, it was a "confession" for me as I have told very few people that I have it, mostly due to the negative stigma.

Now that I have a child with epilepsy, I realize how scary it is to be a parent of a kid with neurological disorders, particularly ones that are so misunderstood, and particularly on cafemom, where harmful terms like "special snowflake" are thrown around often and callously.

So, I would like to be a resource here and help people understand a disorder that few people know much about. It often gets mocked, but there is not a whole lot of "good" information out there.

Please feel free to ask me anything here, or pm me. I will bump the post every now and then, and also hope that it stays searchable for people looking for information on tourettes.

So ask me anything about it if you are interested!
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by on Mar. 31, 2014 at 4:04 PM
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Replies (1-10):
mlg1989
by ZombieMegg on Mar. 31, 2014 at 4:06 PM
1 mom liked this
Well for starters can you tell us how it affects you and your daily life?
rgba
by Ruby Member on Mar. 31, 2014 at 5:08 PM

Thanks for the question.  There's a two part answer: childhood vs. adulthood.

My Tourette's came on abruptly at around age 12 (I am 41 now). For most of high school, I had a variety of mostly motor tics. I shrugged my shoulders, made facial grimaces, blinked, tightened my abdomen, etc.  Stress + hormones made it way worse. 

While I could suppress them some of the time, suppressing them made them worse when they did come out.  At their worst, I regularly pulled muscles and was really uncomfortable quite often, despite being a competitive swimmer and skier. And I was excruciatingly embarrassed by them.

I was constantly asked about them, and, in the 80s, very few TS diagnoses were made (I wasn't officially diagnosed until I was 21 or so).  Even with a diagnosis, I would have been much too embarrassed to talk about it; without the diagnosis, not only did I feel embarrassed but I had no idea why this was happening to me.  So I usually made something up, or just said some teenager response like "nothing."  When I was at my worst, I would go hide out in the school bathroom whenever I could to get a bunch of tics out of the way, and then try to suppress them as much as I could during the day.

Luckily, for many with Tourette's, symptoms wane in adulthood. That has generally been my case, although I definitely still have it.  My most prevalent adult tic is sniffling, which gets worse when I am really anxious or under physical stress (too little sleep, too much caffeine, etc).  Sometimes people ask if I have a cold or allergies.  I also occasionally get other facial tics like grimacing or blinking my eyes, but I can usually suppress them until I am alone. 


Quoting mlg1989: Well for starters can you tell us how it affects you and your daily life?


Anonymous
by Anonymous 1 on Mar. 31, 2014 at 5:10 PM

how long did it take you to type this?

 

Anonymous
by Anonymous 2 on Mar. 31, 2014 at 5:13 PM
1 mom liked this
Do u yell out random. Curse.words.at people?
AngelSinger
by Platinum Member on Mar. 31, 2014 at 5:16 PM

My fil, dh and dd all have Tourette's.

Have you been to the TS Now What site? It's very good...you'll see a link there for a post I wrote about TS and Dr. Laura a few years back. :)


Mommaca
by Member on Mar. 31, 2014 at 5:30 PM

I saw an amazing talk on ted.com from a women who has Tourettes, she was amazingly funny and I just loved how she spoke of it. I had a son with epilepsy (well febrile seizures that were complicated) too, sudden onset and lost him at 4yo, he went into status and ICU complications were too much for him, so I know how it is to hate each seizure. Thanks for sharing this information, really appreciate it. 

Anonymous
by Anonymous 3 on Mar. 31, 2014 at 5:34 PM
How does it feel to know you passed down your crappy genes to your kid?
Anonymous
by Anonymous 4 on Mar. 31, 2014 at 5:44 PM
11 moms liked this

How does it feel to be a ignorant rude little twat?

Quoting Anonymous: How does it feel to know you passed down your crappy genes to your kid?


.mack.
by on Mar. 31, 2014 at 5:45 PM
My older son has Tourette's also. He started having symptoms around age 5.
Gwyndolyn
by Platinum Member on Mar. 31, 2014 at 5:48 PM

I thought you had to be born with Tourette's, so this was interesting.

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