To post this about Tourette’s

[wombatsandaplant]

After an incident on a plane the other day, I thought I’d do a post about Tourette’s in the hope that people will learn a bit more about it.

I was on a plane the other day and was ticcing as I do, (tics are what the involuntary movements and vocalisations are called). Some woman was less than impressed, she was sitting in the row in front of me, I explained why I was ticcing, she was not having any of it and kept telling me to be quiet. I was trying my hardest to be quiet, which I thought I was doing quite successfully. She complained to the air hostess, I explained to the air hostess and she was very sympathetic and told the woman there was nothing she could do as it was Tourette’s and it’s not voluntary. The woman eventually was quiet after this. I get it’s annoying to others but it’s even more annoying to me. I try to embrace though as I can’t do much else.

I have to deal with various incidents like this on a weekly basis. So I am hoping to educate you a bit so you can understand a bit more about Tourette’s.

So, Tourette’s is a neurological disorder that is inherited usually. There are rover 300,000 people in the uk living with Tourette’s. Tourette’s is characterised by involuntary movements and noises called tics. This can be anything from a shoulder shrug, to an arm flail, to a sniff or a shout. It can also mean swearing (this is called coprolalia, but only 10% of those with Tourette’s will swear (I am one of the 10%). Tics can occur in nearly every muscle in the body. Tics usually start in childhood and vary with severity, sometimes they can be worse and other times they will be better.

Vocal and motor tics (the two types of tic) can cause pain and discomfort. This is both through the premonitory urge and through doing the tic. A pre monitory urge occurs frequently but not always. This is an urge that occurs before a tic. It can be a feeling of pressure build up to a tingling sensation. Sometimes there is no premonitory urge and the tics just happen with no warning.

Tics can sometimes be suppressed for a short time, not everyone can suppress though and it can be very difficult to suppress. Think of like blinking, you can stop blinking for a short time but soon you will have to blink.

Tics can be anything. Motor tics can be anything From arm shrugging to jumping, from finger waggling to head jerks. Vocal tics can be anything from whistling to shouting, from phrases to to a hum. Some tics can be amusing. One of my favourite tics is ‘donkeys are the new unicorns’. Tics can be in context to completely out there.

If you have any questions please feel free to ask them and I’ll do my best to answer them.

For about a year we had a colleague with Tourette's. He actually quite livened the office up, if I'm honest. I hope you don't get tic storms, OP. They seemed quite debilitating.

lljkk I do get tic attacks/storms. Usually they vary, I might get 3 or 4 a week for a few months then they’ll go to like once a month for a few months. Mine usually last about an hour, so not too bad but not great either.

Do the storms wipe you out for hours afterwards? Also our colleague wouldn't take any public transport by himself, couldn't dare drive. He had a good job, owned his home, was married & a dad, but had to manage lots of things carefully. I had no idea how debilitating it all could be.

So how should I act, ignore it, smile at you?
Thanks. This is very informative

Yeah they do. I don’t take public transport but I do drive, I love driving but I only do it when I feel okay to do it, that’s what the dvla said.

forrest yes just ignoring is the best way, that’s what I prefer anyway.

Thanks. Good to know.
If you were struggling on that plane. Could anyone have helped in any way. Ignoring feels rude if someone is struggling

Thank you for posting, I'm sorry you had to deal with the ignorant woman on the plane. I have a question if you dont mind?, you may not be able to answer and I understand. Why swearing, why is it that people with verbal ticks use offensive language rather than just random words?, I wonder if people never heard swear words what would they tick vocally?. I've worded that badly but interested.

If someone did laugh, but they couldn't help it, would you welcome them explaining that and apologising or just rather they walked away?

oscar swearing only occurs in about 10% of those with Tourette’s, so not many at all. In those who do swear it’s often because it’s the last thing they should be doing, which makes it taboo. Most Verbal tics are random words and sentences or just noises like hums or whistles.

We laughed at stuff colleague said... honestly, there was an element of jealousy in it. Some of his outbursts were definitely stuff we were thinking, too, but dare not say.

Over time we got more disciplined coz we all thought his tics escalated if we reacted to them which was distracting to us ultimately trying to get any work done. We also reckon he enjoyed some of the attention (colleague was quite extroverted and could be very opinionated). That was him as an individual, and his ways of coping.

My son has Tourette's as well as some other conditions. I would have been furious with that woman, its pretty obvious the person with tourettes has no control over it.

master I think an apology would be nice. But in the past I’ve just wanted to ignore the people who have laughed and move on.

I worked as a youth worker years ago, and had a teen who would should out F* and pedo.

The rest of the kids, totally ignored it, they handled it brilliantly.

However we were out one evening and he shouted pedo at several people, and we of course explained what he had TS, but two became very upset and said although the has TS, and you’ve explained that, there are now people looking at me wondering if that is true (small town), some I know, others I know of them, who will all go home and tell their families and work colleagues. For the first time I seen it from their point of view too.

It’s a hard place for both parties when it’s a phrase like that involved.

Hi OP, this is a really interesting thread, thank you. Can Tourette’s cause someone to have a cough? My oldest boy has a persistent cough that is really really bad at times, but there’s no medical cause, he’s been checked out. He does have ADD and I’m wondering if it’s possible that he has Tourette’s too? It would explain the strange coughing attacks that he takes. Or am I reaching?

t0tally coughing can be a tic and a relatively common one at that. ADHD is very commonly co occurring with Tourette’s

I have a colleague who has epilepsy and tics, she has been really open about both conditions in case she either collapses and fits, or tics in meetings with external bodies. She says she prefers some tics to others- like saying sausages or you're a wizard, rather than the insulting ones, because she knows that she's less likely to have a negative reaction. Do you find that you have "safer" tics that make you feel less vulnerable? I have never met anyone with Tourettes or noticeable tics before her, and she is so upfront about it that it is really inspiring

Thank you, OP. That’s really got me thinking and I’m going to look further into that. He sometimes coughs until his throat is raw. It’s horrible and he gets embarrassed by how it annoys others, though on the plus side, he says he gets a seat to himself on the bus. Actually, the spread of 😷 he’ll probably get the whole bus to himself. 😁

gretchen I have tics that make me feel safer, like squeaks and whistles. I much prefer those as they draw much less attention to me than swearing or random words or movements.

Thanks for sharing OP although it's a shame you've had to - the woman on the plane was an arse!

Thanks guys.

@T0tallyFuckedUpFamily my dc has similar. The GP says it's a tic but hasn't diagnosed Tourettes. Apparently tics are quite common in children and often disappear as they get older, so there's nothing that can be done other than to wait and see when he's older if it still persists.

There does need to be more awareness of Tourettes. My son has Tourettes alongside ASD and ADHD. He has had tics from the age of 17 months. ADHD and ASD are diagnosed quite often but the tics that often come with that are often ignored when a lot of cases would have Tourettes. I think because the media focuses on the stereotypes which make up the minority’s people with the more common tics are overlooked or parents put the tics down to habits, anxiety or similar and don’t push for a proper diagnosis.

Thank you FlaskMaster, unfortunately his developed as he went into adulthood and has stuck with him. He’s 28 now and it’s an awful worry with the current virus going about, I worry about his health.

Thank you.