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HealthIamA 31 year old with Tourettes syndrome AMA!

Mar 20th 2017 by TicsDaily • 38 Questions • 1621 Points

My short bio: I have had TS all my life, but it became severe in the last few years. I studied Physics at university and work for a living (delivering pizza... everyone loves pizza). I welcome your questions about my condition.

My Proof: https://www.youtube.com/watch?v=V5WwEhR43aQ

updated proof; https://www.youtube.com/watch?v=emEhQlouZx8&feature=youtu.be

Q:

Does drinking alcohol affect the symptoms of your condition?

A:

Heya, I've done a video reply; https://www.youtube.com/watch?v=lsXOeLWrxEM


Q:

Thanks so much for replying! You're awesome!

That's very interesting. I suppose then if you are particularly tired, anxious etc. these things may also affect your tics.

A:

you suppose perfectly! 100% right.


Q:

Hi. Thanks for this AMA. I have some unrelated questions to this reply.

  • Firstly, it seems that around 50s in the video you're holding your hands in front of you and you get a tic where you start clapping and singing something. Is that common - are your tics related to things you do?
  • If so, it seems like you're doing something and a random thing pops into your head that's kind of related and you can't stop yourself from making it happen.
  • Also, how does it feel when the tic happens? Do you start doing it because you want to do it and then when you stop yourself you wake up from some kind of trance or is it more like a muscle spasm?
  • Lastly, I'm sorry but I couldn't help laughing at some of the ticks. Do you think that's offensive? I mean, do you mind if people do that. Obviously there's a difference between laughing at you and laughing at the tic. I'm talking about the latter.
A:

heya, thanks for the interest.

bullets 1 and 2; my tic have little to no relation to what I do. they seem random. clapping is very common with neurological tic issues. So i guess thats why I do that. Its far more random than things poping into my head, its more like they start happening and then pop into my head. a crude explanation but its hard to explain.

bullet 3; simple tics are like muscle spazums. complex tics are more guided. i remain fully aware as its happening, so no trance like state during it.

lastly; you can laugh, I do!


Q:

What's the hardest part of the condition for other people to understand?

A:

That I'm not just swearing. Its hard for people to see that its TS as I dont shout swears non-stop.


Q:

Did you ever swear to somebody just because you want to and blamed it on your sickness?

A:

I dont, im very calm and level headed in general, so this situation just doesnt come up.


Q:

Cartman would approve this

A:

haha too true


Q:

How should I treat you if I met you at a bar? SOP for stutterers seems to be just completely ignore it and never finish sentences you may be able to deduce before they can finish speaking. Anything else?

A:

ask questions, if interested or dont if not. Im easy going. Its ok to laugh if I say something funny, thats for sure!


Q:

When you say it got more severe in the last few years, how big has the difference been to your everyday life?

A:

Its gone from unnoticeable, to in your face seriously mobility issues, then back to obvious but not too problematic.


Q:

Why are you working at pizza delivery instead of in physics? Is it related to the syndrome?

A:

Heya, I've done a video reply; https://www.youtube.com/watch?v=0UkCqpOV284


Q:

I respect you so much for the AMA. Good luck to you mate.

A:

thank you


Q:

If driving is a sort of therapy for your TS, have you considered doing something like trucking? It may be a more lucrative career choice than pizza delivery.

A:

I have considered more lucrative driving careers. I'm currently in a don't rock the boat place in my head, so not followed anything up... yet.


Q:

Not for long though.

A:

The machines are taking over!


Q:

Very sorry that it affects you in a such a way that you cannot do what you want. I have mild tourettes myself, and I can definitely understand what you mean that it increases in stressful situations. Since my tick is a small one (Basicly touching my upper lip with my nose) it's not anything noticeable, but it's something that goes wild when under pressure for certain. I hope that you will be able to find a position at some point in which you can feel relieved enough to use your degree! Best of luck in the future! :-)

A:

Thank you <3


Q:

I read narcolepsy instead of TS. I was very concerned for your health when you said you delivered pizza,and then even more concerned when someone suggested truck driving! Glad I went back and reread it!

A:

Must have been half asleep when you read it ;)


Q:

Do you find that customers are fine with your tick, or somehow driving calms the tick long enough you can say the price and leave?

A:

im sure customers would be fine, but youre right, i stay calm long enough to do the basics and leave!


Q:

What happens when you try and sleep?

A:

Heya, I've done a video reply; https://www.youtube.com/watch?v=LlnpypFHqe0


Q:

as a 19 year old with tourrettes which dont seem to be slowing down, did you ever hit any milestones where your tics got better with age?

A:

heya, unfortunately I cant help much with that one. mine got much worst due to stress in my life, rather than getting better. Taking abilify helped alot tho.


Q:

Abilify? oh dude that medicine fucked me up GOOD. I was wrongly prescriped (if you asked me) and I swear to god I could see smells scents

A:

it seem extremely hit and miss in working for people!


Q:

How do you go through interviews?

A:

just being completely open and honest about it.


Q:

I'm a 22 year old who was diagnosed with tourettes at 5. It's gotten a tiny bit less 'agressive' let's say since then. I went from having complex motor tics to simple motor tics (which has been a blessing for general things).

My question is, when your tics weren't as severe, did the thought of it potentially getting worse ever scare you? I'm mildy worried of it going back to what it was or worse.

A:

I live in fear of them getting worse again. Then again i try not to worry.


Q:

I'm 23 with TS, I worry about this all the time. It's a terrifying thought- I used to say "ass" all the time as one of my tics and it drove me mad. I was so glad when it stopped, it was a huge relief. I'm always afraid that will come back.

But, that said, I also know I don't have that much control over it. I try to not focus on it too much, and keep myself relaxed and comfortable wherever I am, as that helps my tics the most. Stay positive- I'm sure we both know the cycle of getting stressed about it, and having your tics get worse!

A:

<3 Thank you for coming here. x


Q:

Have you ever thought of embracing it and just becoming a beatboxer?

Also the link above goes to an "edit" link. I think it should be something like this instead:

https://www.youtube.com/watch?v=V5WwEhR43aQ

A:

thank you! I got that link fixed! Youre a star! Unfortunately I'm not very musical, this is as close as I get; https://www.youtube.com/watch?v=dklv3so_dnE&list=PLSVi5UnYb96eCVDEyNX7ZWv7uB9LHE2yv


Q:

What do we want?!

A CURE FOR TOURETTES!!!

When do we want it?!

CUNT!!!

A:

haha, an oldie but a goodie


Q:

Did you make a video making a video to respond with?

A:

I make lots of videos! Its starting to become like video inception now!


Q:

My son is 14 and has been diagnosed with Tourettes since he was about 8. He's been seeing a psychologist for a while and has been doing some behavior reversal therapy. He suggested getting my son a fidget cube. Have you ever heard of them or used them?

A:

I know well of them and hear good things. I haven't tried one myself yet.


Q:

What are your thoughts on Bob Saget?

A:

I dont think of him often :p


Q:

Has everyone you've met heard of the syndrome? Do you ever meet people who've never heard of it?

A:

Heya, I've done a video reply; https://youtu.be/emEhQlouZx8


Q:

Legitimate question. Have you tried smoking pot in order to help your condition?

A:

I did a little while ago and I find it often makes me paranoid; https://www.youtube.com/watch?v=tQKP7Qn-_WU&feature=youtu.be


Q:

Some years ago South Park made a parody of people making fun of people with Tourettes syndrome. Have you watched it? and if so did you like it?

A:

I love south park and yeah I kinow the one. I dont really connect what I have to the TV version of it. So that helps me not get all upity about it!!


Q:

Do you ever just get really profane for fun and pass it off as ts?

A:

I probably should, but I dont. Out of fear I will become the swearing type of TS, I dont swear hardly ever.


Q:

Have you tried smoking marijuana?

A:

I did a little while ago and I find it often makes me paranoid; https://www.youtube.com/watch?v=tQKP7Qn-_WU&feature=youtu.be


Q:

How do you feel about Karaoke?

A:

Im game for anything, but I cant sing!


Q:

I have a tic disorder, but no vocalizations. My tic gets worse when my anxiety level goes up. It's like a barometer for how nervous I am. ... Do you also find that anxiety increases your tics?

A:

100% i tend to be very confident, but i Tic when i get anxious far worse


Q:

While sending emails or replies do you ever feel tempted to write a "rage message" and then blame it on the tourettes?

A:

haha, never thought of it! Ive made a few rage e-mails in my time. mostly alcohols fault, rather than Tourettes!


Q:

How many sugars in your coffee? any less than 2 makes you a looney, keep that in mind

A:

1... that must be my problem!


Q:

Hey man unfortunately I don't have time to watch this now (definitely will come back and watch later) but have you tried marijuana? I have minor ticks, not full blown TS and it really helps. (I have things such as double blinking or clearing my throat a few more times than normal but nothing crazy. It generally flys under the radar and I've rarely had other people notice.)

Edit: Just saw someone else asked this question and you said it makes you paranoid. I would try smoking again and try different methods. When I was younger every time I smoked pot I would freak out about everything. Felt like cops were around every corner and everyone knew. I stopped and came back when I was a little older and realized no one cares if you smoke and even if a cop caught you in this day and age it's a slap on the wrist. Also different strains and potency will cause you to feel more anxious and paranoid instead of sedated. Finally you can try vaporizing since the wax itself can't be smelled nor can the vapor or try smoke regular weed and only doit at home? Either way it's up to you but it really helps relax my motor ticks and make them much more subtle.

A:

Thank you for that. Perhaps I will make a youtube video about it while trying it!


Q:

Not really a question, but have you seen https://www.touretteshero.com/ ? She has some very creative tics and has embraced her condition in a really cool way.

A:

I have and totally agree.


Q:

Do you still go to the cinema, restaurants, general social events that usually involve being quiet?

If so, has this ever gotten you into trouble because you said the wrong thing!

A:

When my tics have been at their worst, I just stopped going to things like that. I still dont much like going, but I can control myself for a while now thanks to the medication.