Coping with Tourette Syndrome.

[aarya]

First off, this is a thread for those with a genuine interest in discussing Tourette Syndrome, and want to learn more about it. It is also for those of us, if any, that suffers from it.
(Included are also any questions, and stuff, about the comorbid disorders, like anxiety, OCD, ADD/ADHD, Tricho/Derma-tillomania/phagia, etc.)




Secondly, just to make this perfectly clear... If you`ve got some witty and sarcastic remark about people with Tourette, or Tourette in general, without actually suffering yourself, or knows someone who has Tourette... I`ll try to say this as nice as humanely possible... Fuck off. Seriously. Drop dead.





I`ve got TS myself (And a plethora of comorbid disorders), and i`ve got a multitude of bizarre and strange thoughts that stops me from living the kind of life i want. Right now, i`m in the middle of trying to get myself a car. The problem, is that i`m unable to call people who are selling their car. I`ve got this thought, that if i call people, maybe they`re tired or something, and that i call them makes them commit suicide.. Or maybe they die from the call itsself. Which in turn makes it impossible for me to actually get a car. (Very few dealerships have cars in the price-range that i`m looking in.)
And i was just wondering if anyone else in here, either have TS themselves, or know someone with TS who also struggles with these bizarre thoughts.
(I`ve got plenty of other thoughts aswell, like suddenly going crazy, and becoming a serial-killer, or somehow creating a rift in the fabric of reality, and somehow allowing demons to enter this world. Or living in a world filled with zombies...
Completely insane and impossible, i know... But still... What if??


I`ll be back here with more after a while... I just had to vent everything somewhere.

(And in closing. I`ll haunt this thread like a bastard. If anyone makes inappropriate comments, or anything that could be construed to be an inappropriate comment, i`ll report it at once. This ain`t about Tourettesguy, nor the videos of said person.)

 

[onetwothreefour]

Some of your concerns sound obsessive compulsive. I have Tourette's/OCD.

You said you already were diagnosed with some other conditions--what are those?

Disturbing and unwelcome thoughts, especially ones about worrying you would hurt yourself or other people, are certainly a prominent feature of OCD.

Take it easy with yourself. You're not experiencing anything that other humans haven't experienced before for thousands of years, as scary as the thoughts may be.

 

[Yuki Sohma]

i`ve got a multitude of bizarre and strange thoughts that stops me from living the kind of life i want....

My relationship with an ex-lover is suffering because Chic (his name) struggles with Tourette Syndrome--Chic lives in the Soutwest United States & I live in the Pacific Northwest--

We have not talked to each other for about 2 years now...........Chic is great kisser & a sweetheart but the TS holds Chic back..........

 

[racer2438]

why would people that know someone with this horrible issue and are keen and sympathetic to them, help them when ever and in what ever they can.

They are there friend, and understand how hard this is for them.

They are not ones to make jokes, which is cruel and inhumane about this.


Why would they have to FUCK OFF.

Dont sound right to me.

major defensive here, and you just want one sided

My sister works with younger kids with this issue and she pours her heart and soul into helping these kids coup. I help her prepare some of her therapy tools she uses in class.

So I feel insulted by you flying off and tell all just to "fuck off" when you dont have a clue what some people are doing to help those in need.

 

[aarya]

Racer: I think you misunderstood what i meant. I didn`t tell everyone to fuck off. I told the ones who wanted to make jokes about people with TS, to fuck off.

Add to the fact that i`m one of the people who actually needs help with alot of things, and don`t get any... I think i`m the one who has a right to be insulted and offended.
Note however that i`ve not told you to fuck off, and i won`t either. But i do think that you should read my original post twice, think about what it says for 30 minutes, then go back and read it four more times. Then you can repost in this thread.

Thank you for your time and effort for making my day just a tad better... No.. Wait... You didn`t... Ohhwell..


(I must admit, my first reaction was to tell you to go back to school, and study english a bit more... But that`d be just plain evil... Right??)

 

[racer2438]

Racer: I think you misunderstood what i meant. I didn`t tell everyone to fuck off. I told the ones who wanted to make jokes about people with TS, to fuck off.

Add to the fact that i`m one of the people who actually needs help with alot of things, and don`t get any... I think i`m the one who has a right to be insulted and offended.
Note however that i`ve not told you to fuck off, and i won`t either. But i do think that you should read my original post twice, think about what it says for 30 minutes, then go back and read it four more times. Then you can repost in this thread.

Thank you for your time and effort for making my day just a tad better... No.. Wait... You didn`t... Ohhwell..


(I must admit, my first reaction was to tell you to go back to school, and study english a bit more... But that`d be just plain evil... Right??)

I guess your bitter that you are unable to get the help you are needing. For that I am sorry and I wish you the best as you deserve all the help that should be available.

But this was not a english course, all your doing is thowing it back into peope's faces. So just turn around real hard and kiss your own ass, as I am not. I'll be happy and content in helping the kids in what ever I can do for them. I can at least instill in them not be as bitter like you.

 

[aarya]

Racer: I`m not bitter actually... But i am frustrated.
And i`m sorry that i let it out on you.

I appologize.

 

[aarya]

onetwothreefour: I was diagnosed with Tourette and ADD, about three years ago. I`ve not been diagnosed with anything else, but i should be. If it wasn`t for the fact that the general health worker in Norway doesn`t know diddly about TS. I know that i`m OCD, there`s no hiding that. I`ve also, for as long as i can remember, pulled at my hair, and picked at my skin, to the point of making open sores. Still do actually. That`s Trichotillomania and Dermatillomania.
But again, i`ve not been diagnosed with anything other than TS and ADD... *sigh*

 

[StlKj]

I guess your bitter that you are unable to get the help you are needing. For that I am sorry and I wish you the best as you deserve all the help that should be available.

But this was not a english course, all your doing is thowing it back into peope's faces. So just turn around real hard and kiss your own ass, as I am not. I'll be happy and content in helping the kids in what ever I can do for them. I can at least instill in them not be as bitter like you.

Your reaction to aarya's post is over the top, racer. I can only assume that aarya has had to live a big part of his life hearing people make Tourette Syndrome the butt of a joke, or thinking it is just a disorder that causes people to shout naughty words at inappropriate times. His concern that this thread be taken seriously, and his disdain for those who might come in and poke fun is not being bitter or paranoid--it's unfortunately very likely if he had not posted the warning, someone would have come in and done just that.

Cut him some slack here. I understood his point, and I appreciate his attitude and his information on something so very important to him.

 

[racer2438]

In our part of the US. The are my county programs that are available to people with all kinds of medical issues, that are either free or low cost. I prepare the packets of paperwork that my sister gives to the parents. To this date 85% have recieved free medical aid and or other type's of help.

Help is there but our good old goverment makes it hard to get sometime.

I hear people complain alot about issue's they have , but when I ask them what are they doing to search for it, they cant answer. It seems to be easier to complain than to go and fight for your right to obtain for alot of free or low cost medical help.

I wish you the best , but you have to go and fight for the help you need and dont let them keep shutting doors on you. And if they you have the power to reopen them. The red tape they make people go through sucks, as they hope you get tired and just go away. Thats what there banking on.

 

[racer2438]

Your reaction to aarya's post is over the top, racer. I can only assume that aarya has had to live a big part of his life hearing people make Tourette Syndrome the butt of a joke, or thinking it is just a disorder that causes people to shout naughty words at inappropriate times. His concern that this thread be taken seriously, and his disdain for those who might come in and poke fun is not being bitter or paranoid--it's unfortunately very likely if he had not posted the warning, someone would have come in and done just that.

Cut him some slack here. I understood his point, and I appreciate his attitude and his information on something so very important to him.

I gave him slack, I was trying to encourage him not to give up, It was important to me in the work that I do for kids also. He interpeted what I said wrong just as I may have. He is frustrated that he has not been given the help that he is entitle to and no one is stepping up to the plate to help him. As he said in his reply "He let it out on me."

This guy, works hard to get by and has some struggles, it's not fair that he can not get help. Thats just wrong he needs someone that maybe able to open these doors for him to get the help. Thats one of our issues we have in the US in medical care. Buts thats another story.

 

[aarya]

I live in Norway, where help is available.. Well.. Sorta anyway.
All the information i`ve gathered on Tourette and the conditions that tend to follow it, i`ve found on my own.
And the information i`ve found, have been spotty at best, mostly detailed about how you manage if your own child suffers from TS. Very little info about how you as an adult should go about coping with your life.

I`ve had regular sessions with psychiatric nurses, where i used to hope that i could get some help as to try to understand what TS is, and how to live with it. But.. What has happened is that i`m informing and educating the nurses on what TS is. And i was thrust into the TS-world four years ago.

Yes... The help is out there, but it is mainly aimed at children with TS, or their parents.

I`m currently disabled, because i`m unable to work more than 20%. I`ve got no real dreams or plans for the future. I spend my days sitting at my computer, watching tv, listening to music.. And thinking... Wishing that i wasn`t trapped in this hell that is my body. Wishing that i could be normal, and that i could have an ordinary job, doing ordinary things, like ordinary people.

(To those who think that they`d enjoy such a life of doing virtually nothing... Think again.. It might be nice for a couple of years... But when you add to the fact that you`re absolutely separated from the real world, unable to function properly in it... Yeah.... It`s not fun.)

I`m just so fucking tired of everything...
Whenever i`m outside my apartment, i have to pretend to be normal.. And i`m able to, for short periods of time... I`m able to internalize my tics, to such an extent, that people who are around me from time to time, can`t for the life of them understand that i have TS.
Ofcourse, internalizing my tics, makes my muscles rather tense. Whenever i send a tic inwards, i tense my muscles, and just wish it to go away. Ofcourse, it`s like having an itch you can`t scratch, or trying to internalize a sneeze. It takes alot of effort.

Gah... I`m just rambling...

I`ll stop for now.

 

[onetwothreefour]

I understand exactly your frustration. I am 25 and live at home with my parents. I also had no help for Tourette's. Believe it or not I was more harrassed by teachers than other students because of my behavior. I am hesitant to even say this because people often don't believe I could have fallen through the cracks for so long--but I was *23* before I was finally diagnosed with Tourette's. So believe me I know what it's like to have people make fun of you and not know yourself what's wrong.

I don't know what to say right now except that there are good days and bad days, and I know you will find a future for yourself. It's these things that are the challenges of our lives. And these are the things that we will find a way to deal with and become stronger. I will write more later--I am pretty busy at the moment. But just wanted to let you know I care and I hear you!

 

[tommyj]

There was a 16 (?) year old with Tourettes (I'm pretty sure) on US Air 1068 from Tampa to Philly on 3/28/08. He was shouting out "Jeopardy theme song" and "Pennsylvania lottery theme" and then, "September 11th!"..He also was rocking in the seat. He seemed like a smart young male.

 

[JoeyE76]

Wow. I can only imagine what it has to be like to live with Tourette Syndrome. First let me say I wouldn't want to wish this disorder on anyone. It must be a struggle to deal with, especially in the more severe forms of it. I have done research on it and know quite a lot about it. The reason is not because I have it, but because I am majorly attracted to guys who have it. Again, I do not wish to offend anyone, and I do feel guilty because i know I am getting off on someone else's problems. But, there is nothing that gets me more excited than to see a dude tic like eye-blinking, facial grimace, little twitches, and simple vocal tics. When it becomes more extreme than that, I tend not to be too excited anymore because it's just painful to watch. I am posting to let others with Tourette Syndrome know that there are guys out there who find the tics to be an amazing turn on. And it's not just me, because I have chatted with others over the years who feel the same way as I do. Thanks.