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How To Have Tourette’s

{ 23 comments… read them below or add one }

ZXT September 30, 2009 at 5:38 pm

Hi Josh, I came from Sitesketch101 on your link provided there. Now I understand (a little) what’s Tourette Syndrome is.

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Josh Hanagarne September 30, 2009 at 7:42 pm

@ZXT: Every case is different, and my case is really, really extreme. But I’m always happy to answer any questions you have. Thanks for looking.

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Renee January 25, 2010 at 8:13 pm

Hi Josh, I’ve had TS+ since I was one. I’m 58 now, and I’ve grown up with much shame around it. In fact, I wasn’t diagnosed until I was in my early 40′s, and my neurologist said “If it looks like a duck and quacks like a duck, it must be a duck.” Thank you, doc! My mom read an article in Parade Magazine when I was in college in the early ’70′s, and ever since then, I ran to every shrink and neurologist I could for confirmation of TS. Every single one said I didn’t have it. When I tick, I feel shame, guilt, and hatred for myself, so I hate it, and the negative attention it gets me. And it is REALLY hard to watch someone else ticcing. I wasn’t able to even talk about it until I decided about 10 years ago to join an online group of parents of kids with neurological disorders. I was able to get myself of haldol, which I requested from my shrinks (and it screwed me up forever, I’m afraid), onto clonidine. I also take neurontin (mood stabilizer), and lexapro (we all know what THAT’s for, don’t we?). I finally have a semi-normal life, but I have TS bleed-throughs every once in a while, especially when I eat chocolate, high test coffee, or corn syrup, am tired, under stress… Anyway, your video made me laugh. Sandy Sommer recommended your site to me. Thanks.

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Josh Hanagarne January 25, 2010 at 8:48 pm

Hi Renee, that’s definitely a late diagnosis. I can’t watch even my own videos, and I certainly understand how you feel about seeing other people’s tics. If I can ever do anything for you, I hope you’ll say so. Put Sandy in a headlock for me the next time you see him. Stay away from chocolate, high test coffee, corn syrup, tiredness, and stress:)

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Jimmy T.Rets March 4, 2010 at 7:13 am

Hi Josh and Renee,
Good site you have here Josh. There’s a lot of late diagnoses around. I too was diagnosed late in life at the age of 48, two years ago last month. Through childhood I had ‘habits’ one after the other, ususally some kind of face pulling, and by 11 I was shaking and nodding my head off. With stress it’s a wonder my head ever remained attatched. In my early teenage years I developed more facial stuff like sticking my jaw out; at 13 I plucked out every eyelash and eyebrow I owned, placing the little wet bulb at the end onto my upper lip to feel the sensation. I had always been hyperactive and would do nutty things without thinking too much about what I was doing, but often as I got older I was complelled to act more and more on impulse, following my whims, etc. And on it went…

I had a temper that would come out under pressure and the rage on a couple of occasions got me out of some pretty compromising situations with bullies. They never did again, let’s just put it that way. I wasn’t a hard individual and I got through life by my sense of humour, which earned me many friends back then. My point however is, that was the only Tourettes rage experiences I’d had until about 20 when real pressure was applied in needing to survive financially etc. Rage like I’d never know surfaced in me and at times I thought I was losing my mind, I just couldn’t understand the person I was becoming. It was so destructive. Anyway, some of the other tics subsided but offered themselves up here and there, which would terrify me that they would return and I just didn’t want to go back there, thanks, and thankfully they never really took hold again like they had previously. Obviously they are still part of my tic routine but they don’t dominate anymore.

My 20s were a nightmare and in 1987 I eventually took myself to the doctor and neurologist, “you have a nervous tic,” he said, “and you do this pigeon-like movement of your head.” Tell me something I don’t know doctor, O brain of Britain! He put me on drugs; they made me ill with side effects and I became suicidal, unknowing that it was the medication until I came off it, more or less by accident. I wasn’t going there again so I left it for many years. OCD thoughts plagued me and drove me crazy throughout the 2000s – it was absoulutely dreadful waking up every morning to the same old subjects living in my head that would torment me day and night! Then in 2006 I developed some new tics, including vocal ones – I’d always had something going on in my speech, such as a word or a sound would have to be played with and I’d mess around with accents and sing an awful lot. Even though I had a friend with Tourettes (now lives in the states) I didn’t associate my vocalisations etc with TS, although I’d suspected for years that I had it. I wondered what on earth was the matter with me and could only think that it was some OCD related thing. It all led to me seeing a doctor in the end and before long I was being diagnosed with Tourettes+OCD/ADHD with anxiety and PTSD. It has come to light since that I also have Asperger’s/autistic tendancies; I’m not sure if that’s a diagnosis though, I’m going to ask my specialist next month because I’m seeing it more and more in myself. A wonderful cocktail, eh!

Since my diagnoses my Tourettes – I spent many years suppressing tics which has left me with a damaged vert in my neck and soft tissue, strain damage – has kind of got worse, like as if Brian (my Touretty brain) decided he was gonna come out to play now because he had just been given his official birth certificate (O my goodnes, please don’t let them find Obaaamaaa’s or he might just keep one of his election promises, nah, not much chance of that!). My vocal tics, which thankfully don’t dominate, have increased and some got louder. Much of my vocal stuff is thankfully below the audible level or can be disguised, but seems to enjoy solitude; if I’m on my own the echoing and repeating of word sounds have a party. My vocal stuff is beginning to show itself more in front of people other than my wife, and so is on the increase in that respect. I hate being seen ticcing and like I said for many years I tried to blend into the background through embarrasment. It took the edge of my personality and I could only truly be myself in certain company. This has led to much anxiety in having to go into wider society and meet strangers and so on. I don’t go out much alone these days and I must say my neck pain is a lot better for it. Like I said though I do have my circles and there I’m not too bad and could even be said to have a lot of confidence, like in the video you can see me in here http://www.youtube.com/watch?v=aWDR475yujo
…it was recorded at my 50th birthday party, the kind of party that only a compulsing, obsessing Tretter can dream up, haha!

About seeing yourself and others tic. I used to so much HATE being filmed and on occasions when cameras were around i would shrink into the background or just suppress my self into the outer stratosphere – even though I’ve actually appeared on TV a number of times. We do not have a video of our wedding even because of this fear and hate. Take my photgraph all night, I don’t care, theyre stills, but video…Anyway, I said “used to”. What do I mean? I too hated seeing myself tic; on film OMG the embarrasment! But since my diagnosis I’ve changed, and as long as I know that people know I have Tourettes I can relax and be myself. My diagnosis is the best thing that could ever have happened for me because by being able to explain to people instead of hiding, I get things out in the open early doors and inform people of my condition. This is good for me and it’s good for raising awareness for the rest of us experiencing Tourettes. I want to get on TV now talking about it, you see that would be OK because it’s what I would be there for: to talk about TS, my condition. I wouldn’t like to be filmed by someone who didnt know I have TS though, so I stiil have the old feeling in that department.

It’s been great sharing with you, but I have to go now. Josh could you please get a link to TFI through to Rennee somehow? as I’m sure she would enjoy our company. Taking into account that it is a private members by invite only site. Thanks!

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Renee March 4, 2010 at 10:37 am

Hi Josh! You know as well as I that very people can put Sandy in a headlock now that he’s lean, mean, and Primal! I’d love to be able to just sit at the beach in some far-off place, contemplating the waves, but life intervenes. I applaud your sense of humor and courage for putting yourself, and your tics, out there for all the world to see. Not many women have TS, so I an one of the lucky ones. It’s better than cancer, that’s for sure!

Hi Jimmy,

I’m on facebook, if you want to friend me. I think I must have a milder form of TS. It’s not much fun trying to be beautiful and attract the opposite sex’s attention, but be self conscious because of blinking tics, head shaking, noise making (and very loud at that). Growing up, everyone who knew me knew that my “habits” were off limits to speak about around me. Kinda like the Pink Elephant in the room that everyone ignores. I am very grateful for that. My family and cousins were at dinner in a restaurant one time, I was with my husband at the time, and my favorite cousin’s boyfriend had the audacity to point out my ticcing. He remembers, almost 25 years ago, that the whole table got very quiet – people were shaking their heads at him – he had no idea I tourette’s, and since then, my mom and sister branded him an idiot. But it’s not his fault. We have since discussed the incident. He worries when I tic, but I told me it’s not anything he did to set me off.
Anyway, it sound like your TS is challenging. I used to take haldol to control the symptoms, which worked well for a while. I was able to “pass” in society like I was “one of them”, but I still had social problems and rageaholic tendencies. Are you musical? You’re obviously very intelligent. These are some of the good sides of TS.
Gotta go. Renee

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Jimmy T.Rets March 4, 2010 at 11:20 am

Hi Renee
thanks for your reply…I would leave a link to the TFI but because it is a private site for ticcas only I can’t compromise the safety of the site by publicly leaving a link. You say I can Facebook you but I don’t know your full name. I would love to see you join our TS family on TFI, which has members from around the world, including Josh. Funnily enough, we have a strong representation of women Tretters amongst us so you’ll be in good company my friend. I’ll leave my email address if you want to send me yours and then I can send you an invite from the site should you be interested.

Thanks Rennee, hope to see you online for a chat on the site (we have a live chat room+video and live chat facilities).

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Jimmy T.Rets March 4, 2010 at 11:33 am

O yea, sorry Rennee, I am musical, yes. You can go to my site myspace.com/t.rets to hear stuff if you would like to.

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Jimmy T.Rets March 4, 2010 at 7:16 am

Did that last, rather long comment get submitted ot have I lost it? Blow, I’m not typing all that out agian if it’s lost, lol!

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Jimmy T.Rets March 4, 2010 at 7:17 am

Ahh no, there it is, thank goddness for that!

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Josh Hanagarne April 12, 2010 at 10:50 am

If it goes that way, make sure you guys let me know if I can ever do anything for you.

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T.Rets August 19, 2010 at 9:18 pm

Hi Josh, long time…I saw this guy and thought you might like to arrange to meet him lol. One day his wish will come true; such great karma he has there.

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T.Rets August 19, 2010 at 9:18 pm
LeahPilkinton October 18, 2011 at 9:00 pm

I have tourettes 2! The vocal tics.
I am just like you!

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LeahPilkinton October 18, 2011 at 9:02 pm

Hi Renee! I have the extreme case of vocal tourettes. I get picked on at school.

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Tyler January 22, 2012 at 6:21 pm

yeah I know how u feel exept I have a extreme muscle tics

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Yash January 31, 2012 at 1:44 pm

Try an all raw food diet to re-balance the nervous system (particularly one that is high in fruit, as fruit is the best way to regenerate the brain and nervous system). There is nothing healthy about eating dead animal tissue, or dry beans, and other artificial and/or cooked (killed) food. Eat some whole and ‘alive food’, and absorb its high magnetism and energy, and watch how it will transform the body and regenerate genetic problems and weaknesses. But don’t expect the medical community to agree. Their consciousness of truth is on a much lower level. They don’t have any experience living on a higher plane of consciousness, and so they don’t realize that the lower truths that they like to profess (lack of vitamin b-12 and protein, lack of this mineral and that mineral, etc.) don’t apply to someone who is higher up the mountain. Fresh and raw foods will give one plenty of nutrition and also balance out whatever is wrong with the body.

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Monica Haney March 14, 2012 at 12:31 am

Wow, you guys make me not feel so bad for pushing for a professional diagnoses with my son. With out one I just sound like a paranoid mother, & I’m sure our pediatrician would thinks so. We’re just at the beginning of his journey with this, so the more I can understand the better supportive I can be. I’m rather self conscience about parenting, (I have a few generations to make up for). Any does or don’ts??

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T.Rets March 25, 2012 at 3:54 pm

Hi Monica, welcome :)

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Stuart Atkins March 28, 2012 at 4:52 pm

Hi Josh. It’s been awhile since I posted. Sorry.

I loved the Laugh post from yesterday. I’ve had Tourettes for 45 years and both humor and slow breathing does wonders, plus exercise. As long as you keep laughing at yourself, you may have Tourettes, but it does not have you. I do lots of public speaking and am also a professor and marketing consultant. I tell my audiences up front that, “I may jerk a few times, but I’m not a jerk.” We all laugh. The air calms. And, I then woo them with my amazing ability to captivate an audience, in spite of having Tourettes. I fell sorry for great speakers that don’t have Tourettes! Mine is milder than your but I understand some of your struggles.

Please keep laughing at both life and yourself. I just love your big “A”: Attitude.

Keep it up…

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Skarlet H. April 5, 2012 at 8:50 am

Hey everyone.. Im not exactly sure if i do have Tourette’s syndrome, but it’d be nice to know for sure.:) I’ve known about it since I was about 9 years old. (im 15 now) I started twitching every day, but it only lasted a few moments. Sometimes I would feel it coming before it happened too. My neck and my shoulder would jerk back and I would make different noises that almost sounded like I was in pain.. But I’m wasn’t. lol ^.^ it’s been going on and on until today and my sister told me that maybe I have Tourette’s syndrome. I know that if I do, it’s not as extreme as some people, but I’m starting to notice more “symptoms” I guess.. my head will jerk back on its own, my ankle will jerk different ways, and the simple tics are becoming more frequent.. None of this bother’s my dail life, t I just wanted to know for sure, so that when I’m older I’ll know if something’s wrong with me.
Thank you <3 :]]

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MrsAH October 30, 2012 at 8:22 am

I am so thankful that I stumbled upon your website. We’ve been almost certain for a while now that our 6 year old has Tourette’s. I had done a google search for ‘celebrities with Tourette’s’ and found my way here. Reading a few of your stories and all these comments really helped. It’s been a devastating year to walk through and our next step, the hardest one in my opinion, is getting that “official diagnosis”. It encourages me to know that we’re not alone. After my denial phase of ever fathoming that Tourette’s could even be a possibility for our son, I am now looking forward to learning as much as I can about it so we can help our son live the best life that he can. Thank you for being so open about your story.

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T.Rets October 30, 2012 at 6:02 pm

Hi MrsAH, welcome here. I dont thihk you’ll have any problems getting a diagnosis if your son is displaying Tourettes’s symptoms and fits the history and other diagnosal criteria. They seem to be handing out diagnoses hand over fist at the moment over here in England and i believe it’s a similar pattern elsewhere so you shouldnt have a problem. Hope it all works out for your family and that your son gets the support, treatment etc he will need throughout his life.

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