
My Life with Tourette’s Syndrome - Hooke
http://www.nytimes.com/2016/11/23/opinion/my-life-with-tourettes-syndrome.html
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grimmdude
I have mild Tourette's as well, mainly in the form of body and facial tics.
While I had some challenges growing up (nobody knew why I did the things I
did) I can't say it was as bad as this recounting. I am a bit younger though
(33). I do agree that most people just think of Tourette's as uncontrollable
swearing since that's mainly how it's represented on TV. It sucks, but I'm
lucky that it's relatively mild and people I know don't seem to be bothered by
it. I think it's very hard for many people to understand because it's so hard
to put into words. Many people think it's involuntary, but when you tell them
that it's in fact voluntary, but compulsory they tend to downplay it and
wonder why you just don't stop. Anyway, great article cheers.

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hsitz
>when you tell them that it's in fact voluntary, but compulsory they tend to
downplay it and wonder why you just don't stop

It sounds like you should find another way to explain things. "Voluntary" and
"compulsory" are in their usual meanings contradictory, muutually exclusive,
impossible for one action to be both. So it's no wonder that people get
confused when you tell them it's "voluntary". I understand what you experience
may be hard to put into words, but maybe you could find some way that at least
avoids this confusion.

~~~
justinpombrio
Someone described something similar as "like sneezing". You know when a sneeze
is coming on, and you can delay it, but it's hard or impossible to actually
stop the sneeze. Is that a good analogy?

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WhoBeI
Regarding sneezing: next time you feel your nose itching squeeze the top
portion of your right ring finger real hard. I have no clue why it works but
in most cases (say 90%) it works for me.

Then again I sneeze when ever I look up at a clear blue sky so it might just
be my wiring. :)

~~~
user837387
Just cover your nostrils with the side of your pointing finger. That usually
stops the sneeze. My theory is that it stops the flow into your inner nose of
whatever is causing you to sneeze; most likely some type of micro particles.

~~~
refurb
Breathing out through my nose works for me. Seems to quiet the sneezing
"itch".

Breathing in through my nose intensifies it.

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Zelmor
I think I was 10 or 11. I was having a rough time in school. Little in regards
to friends, rather a lot of mocking behaviour. My Tourette's was mild, but it
got worse with stress. It almost completely disappears in nature and the
garden. So around age 10-11 I decided that I would not have any of this ticks
and unwanted movements of hands, head and compulsiveness. I started exercising
breathing and paying attention to my limbs during what I did not really
understand for what it was at the time: meditation. It brought awareness that
I lacked before, something that no-one has taught me about. I overcame much of
my Tourette's during those years. Some remain, but it is mostly restricted to
times of stress and tiredness.

I don't really know what I'm trying to say with this post. I cried a bit
during that video, understanding how worse people have it than I do. I feel
for you. I wish you the best, and I wish I could just give you people a hug
during the hard times.

~~~
Kluny
I was able to get through a lot of my childhood tics this way - compulsive
blinking, hand flapping, and a skin-folding movement of my thumb that left a
open wound at the edge of my hand. Not all of them though. I've still got a
bunch of large muscle movements that won't go away. Maybe I should try
meditating again.

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juice_bus
Thank you for posting this.

As a 20-something year old with Tourette's, I always like to read about older
people with Tourette's Syndrome. I recently found out a coworker has
Tourette's Syndrome at our office and being able to be open about it with
someone else like that - even though the tics are different - has helped a
lot.

Seeing someone that is older and isn't as self conscious about their tics as I
am gives me more hope for the future.

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nchammas
I was amazed to stumble across a few case studies on YouTube of a doctor
treating Tourette's by adjusting the resting position of the patient's jaw.

[https://www.youtube.com/watch?v=nLkPBUBmxDo](https://www.youtube.com/watch?v=nLkPBUBmxDo)

I assume there are different types of Tourette's with different causes and
different treatments, but it was really amazing to see this link to the jaw.

~~~
meowface
That's super interesting.

I have no medical background at all, but I wonder if this could be related to
the dopamine hypothesis of Tourette's. [1]

Bruxism and other mandibular issues can be associated with dopamine
dysfunction. Normally I wouldn't think that the jaw could actually _cause_ the
problems, but perhaps there could be some kind of feedback loop there tied to
dopamine.

[1]
[https://en.wikipedia.org/wiki/Causes_and_origins_of_Tourette...](https://en.wikipedia.org/wiki/Causes_and_origins_of_Tourette_syndrome#Pathophysiology)

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AndrewUnmuted
> A young man approached me. He said, ”I know you’re faking it because I am an
> actor.” And then he acted like someone acting like they have Tourette’s.

As a sufferer of Tourrette's, this makes my blood absolutely boil. I grew up
among relatively supportive individuals, so I never had to experience this
level of blatant, ignorant naiveté. Never did I realize that sufferers still
have to deal with this unnecessary torment. You'd think that social media
would expand peoples' knowledge, open mindedness, etc, but clearly we have a
ways to go.

~~~
ticviking
> You'd think that social media would expand peoples' knowledge, open
> mindedness, etc, but clearly we have a ways to go.

Ohh how I wish...

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saghm
I was diagnosed with Tourette's in elementary school, but I've had tics for as
long as I can remember. Similar to the author, I had a lot of negative
experiences early on with people (both adults and other kids) mocking and
telling me that I "did not have Tourette's". Starting around high school
though, people seemed to become more open-minded about it, which I can only
assume is due to people finally considering me old enough to be a credible
source about my own health. I'm much younger than the author though (currently
only 22), so I can only imagine how much more difficult it would have been to
have to deal with ignorant people 30 years ago. I sometimes wonder what would
have happened to me if I were born several decades earlier; with the
combination of my Tourette's, OCD, ADHD, and anxiety, I can't imagine I would
have been able to get the support and help I needed to become the self-
sufficient adult I am today

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readymade
I have mild Tourette's, which has thankfully gotten milder in adulthood. It
was the most pronounced in grade school. Minor facial tics, the occasional
head jerk, and some subvocalized echolalia that took me years to be able to
notice myself doing. I'm kind of shocked it's still so misunderstood by
society at large.

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markharris99
Very interesting....

Karaoke Chicago 'If you leave me now':
[https://www.youtube.com/watch?v=BqI3xsPrtq0](https://www.youtube.com/watch?v=BqI3xsPrtq0)

Chris De Burgh ' Lady in red':
[https://www.youtube.com/watch?v=wHfo8zwYFUo](https://www.youtube.com/watch?v=wHfo8zwYFUo)

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k__
Well, I also know people who think they have fibromyalgie. I believe in
tourettes, but I can understand why people don't believe in some illness.

~~~
saghm
I suppose it might be possible to tell when someone is incorrect about a
perceived medical condition if you know them well, but I can't imagine meeting
someone for the first time and telling them that they don't have a medical
condition that they say they have (which has happened to me countless times
over the years with my Tourette's). Given that I've been diagnosed by multiple
doctors, this either means that they don't trust medicine or they think that I
would lie about a medical diagnosis (again, without having met me before).
Maybe you can understand why some people think it's reasonable to tell compete
strangers that their medical diagnosis a sham or that they're liars, but I
definitely can't.

~~~
k__
I think there are differences

IfI just met you, and you say you got a real condition, like tourette, I will
probably believe you, because I think tourette is real.

But if you would tell me you had fibromyalgie, I wouldn't believe you, because
I don't think it's a real condition.

This has nothing to do with how long I knew you.

~~~
k__
Why the down-votes?

Do you also believe a person that tells you homeopathy healed them?

Just because someone believes in something doesn't make it more real.

~~~
saghm
I don't believe in homeopathy because there's no scientific or medical
evidence that it works. Fibromyalgia is a documented medical condition that
actual doctors diagnose. I'm sorry, but I don't really see a parallel here.

(That being said, I didn't downvote you; even if I wanted to, I don't have the
karma for it)

~~~
k__
There are many doctors who prescribe homeopathy.

