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IamA 31 year old with Tourettes syndrome AMA!
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
TicsDaily220 karma
Heya, I've done a video reply; https://www.youtube.com/watch?v=lsXOeLWrxEM
lawyernotliar70 karma
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.
THEREAL_ROBFORD9 karma
Growing up, how did you explain tourettes to the other kids who may not have understood it?
Dawgz3 karma
It must of been pretty tough I would assume? Kids are usually less understanding to adversity (laugh, mock, and etc.) Would be cool to hear from OP about growing up through school. 🏫
TicsDaily3 karma
i was very lucky that i went full blow as an adult. as a child i blended in, with relatively few tics. So it was invisible to most.
barba_rossa28 karma
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.
TicsDaily5 karma
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!
seamstress80207 karma
Why are you working at pizza delivery instead of in physics? Is it related to the syndrome?
TicsDaily214 karma
Heya, I've done a video reply; https://www.youtube.com/watch?v=0UkCqpOV284
thiney4961 karma
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.
TicsDaily129 karma
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.
spiralbean25 karma
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!
Centais23 karma
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! :-)
rguy847 karma
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?
TicsDaily14 karma
im sure customers would be fine, but youre right, i stay calm long enough to do the basics and leave!
BloodyManticore123 karma
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?
TicsDaily116 karma
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.
Imliterallyabanana73 karma
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
BEANandCHEE102 karma
What's the hardest part of the condition for other people to understand?
TicsDaily247 karma
That I'm not just swearing. Its hard for people to see that its TS as I dont shout swears non-stop.
lenny240383 karma
Did you ever swear to somebody just because you want to and blamed it on your sickness?
TicsDaily95 karma
I dont, im very calm and level headed in general, so this situation just doesnt come up.
TicsDaily45 karma
I dont, im very calm and level headed in general, so this situation just doesnt come up.
TicsDaily22 karma
I dont, im very calm and level headed in general, so this situation just doesnt come up.
Mustangarrett20 karma
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?
TicsDaily14 karma
ask questions, if interested or dont if not. Im easy going. Its ok to laugh if I say something funny, thats for sure!
IlIIlIIIIlllIIIIll87 karma
When you say it got more severe in the last few years, how big has the difference been to your everyday life?
TicsDaily126 karma
Its gone from unnoticeable, to in your face seriously mobility issues, then back to obvious but not too problematic.
IlIIlIIIIlllIIIIll11 karma
I must admit that i dont know very much about touretts syndrome. Do you have any good examples of how TS can be in the way of some activities? Are there any good ways of holding the symptoms back?
rguy8416 karma
I don't have TS, but have Cerebral Palsy, so loud noises, especially that I don't prepare for makes me jump. I was in a summer class with somebody with TS whos tic was a 2-3 secord scream, I jumped every time.
TicsDaily20 karma
oh dear lol. i had a screaming tic for a while! they made me jump too! haha
TicsDaily14 karma
let tics cna leave you walking with a stick. Vocal tics and make it hard to communicate when it gets bad. fitting tics and leave you on the floor having something that looks like epilepsy.
TicsDaily63 karma
Heya, I've done a video reply; https://www.youtube.com/watch?v=LlnpypFHqe0
TicsDaily63 karma
The single most common misconception is swearing. only about 10 to 20% of people with TS swear, yet common knowledge would have you believe its the only symptom.
Ressuuuu43 karma
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.
TicsDaily48 karma
I live in fear of them getting worse again. Then again i try not to worry.
Landrin20120 karma
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!
premium_laughs27 karma
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:
TicsDaily45 karma
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
TicsDaily41 karma
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
fifaace7719 karma
How do you go about day to day activities? Like grocery shopping for example.
Are people understanding when you explain it to them?
TicsDaily28 karma
Heya, I've done a video reply; https://www.youtube.com/watch?v=M4HeM1onzis
LaLa030516 karma
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?
TicsDaily14 karma
I know well of them and hear good things. I haven't tried one myself yet.
snugiebum511 karma
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?
TicsDaily20 karma
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!!
Minscandmightyboo10 karma
While sending emails or replies do you ever feel tempted to write a "rage message" and then blame it on the tourettes?
TicsDaily24 karma
haha, never thought of it! Ive made a few rage e-mails in my time. mostly alcohols fault, rather than Tourettes!
Rjmiller41610 karma
Legitimate question. Have you tried smoking pot in order to help your condition?
TicsDaily16 karma
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
TicsDaily31 karma
I probably should, but I dont. Out of fear I will become the swearing type of TS, I dont swear hardly ever.
TicsDaily15 karma
I find it too hard to stay still to meditate. I probably should practice more mindfulness.
Acealone97 karma
Has everyone you've met heard of the syndrome? Do you ever meet people who've never heard of it?
CacheusClay6 karma
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?
Yochilllllllll4 karma
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.
TicsDaily4 karma
Thank you for that. Perhaps I will make a youtube video about it while trying it!
Survilus4 karma
How many sugars in your coffee? any less than 2 makes you a looney, keep that in mind
itfiend3 karma
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.
TicsDaily7 karma
head on-over the the Tourettes subreddit and tell your tale. This deserves its own place to talk safely
Nirai902 karma
Have you seen South Parks Tourette episode? If so, what do you think about it?
TicsDaily2 karma
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!!
viomoo2 karma
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!
TicsDaily3 karma
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.
TicsDaily11 karma
I tend to drink the low sugar versions. Save all my sugar intake for coffee time!
LaLa03052 karma
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?
TicsDaily3 karma
I know well of them and hear good things. I haven't tried one myself yet.
oxideseven1 karma
How do you feel about having Tourettes?
Based on this ama, you seem to have accepted it and can laugh about it, but it must still be a struggle?
TicsDaily2 karma
I think you described how I feel perfectly. Glad it comes across true to my feelings.
Andrewcoleofficial337 karma
What do we want?!
A CURE FOR TOURETTES!!!
When do we want it?!
CUNT!!!
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