Truth about Tourette's not what you think ~ BY BRUCE HOLTGREN

[mzmolly]

http://news.cincinnati.com/apps/pbcs.dll/article?AID=/20070111/EDIT01/701110314/1020">CINCINNATI ENQUIRER

It's impossible to navigate through popular culture without having heard about Tourette's syndrome. And why not? It's not exactly your ordinary medical affliction. Unfortunately, for most people, Tourette's is equated with its rarest symptom: involuntary outbursts of cursing and other inappropriate language.

You probably would be surprised to know that only about 10 to 15 percent of people with Tourette's have "that cursing thing," the peculiar urge that is known as coprolalia. I, too, used to think Tourette's was synonymous with swearing. Had I known the truth, I might have been diagnosed decades earlier.

Those who do exhibit coprolalia and other pronounced symptoms certainly deserve much more respect and compassion than they get. More broadly, everyone with Tourette's needs better public understanding, and especially an end to the stigma that surrounds this sometimes bizarre disorder.

Tourette's, a genetic affliction, is characterized by two or more "motor tics" - involuntary physical movements such as facial grimaces or moving the head, neck or limbs in odd ways - and at least one vocal tic, which is usually little more than humming, grunting or whistling. Onset usually comes by mid-childhood, with severity of tics most frequently seen by age 10 or 12. In the majority of cases, tics then gradually diminish to little or nothing by adulthood. The course of each case is as unique as each individual; there is no such thing as a "typical" case of Tourette's.

As medical problems go, Tourette's is, except in the most severe cases, about the most minor imaginable thing to have. It's never fatal, and very rarely a disability. Indeed, countless people live their whole lives without realizing they have the disorder. Countless others know they have it but don't bother with treatment or even getting a diagnosis because they can live with the tics more readily than bothering with highly imperfect medications and their side effects.

Here's more from http://en.wikipedia.org/wiki/Tourette_syndrome">WIKI

Please give this a kick and a rec in order to increase awareness about "TS."

[kskiska]

1. I'm dismayed, too, that this one symptom is focused on

I knew a guy who had Tourette's. He exhibited all the jerky head movements, grunting, and facial tics mentioned above. He also did the cursing, but that's not what this disease is all about.

[mzmolly]

4. My little girl has TS and most days, most people wouldn't even know it.

She started out with a minor blink and throat clearing.

[wellstone dem]

2. kick

[mzmolly]

3. Thanks guys.

:hi:

[seabeyond]

5. man... fuckin a.... (not a tourette outburst) my youngest has been thru

massive amounts of blood tests, brain scans and all kinds of doctors trying to figure out what is up with him until about 7 i told everyone to STOP, enough. we will live what is up with him and totally embrace and allow whatever to be, but no more poking and prodding. what really pisses me off, they should have easily have recognized this with the little i read on the subject right here, and no one called it. i am having a tough time with doctors. seems like whatever me or kids are experiencing are not being caught by medical to the point i am non trusting of doctors and dentists and not using them anymore

i am thrilled you put this out. so thrilled. maybe some of the other mysteries of my youngest can be identified. thank you

[mzmolly]

7. I am so sorry that your son has had to endure so much. I've become an expert

in a sense, feel free to tap me anytime.

Magnesium is helpful for tics and "calming" if you're interested in learning more.

:hug:

[mzmolly]

13. I should mention my daugther has TS, and were it not for the internet,

I'd be greatly misinformed. We got a diagnosis but the neuro was very out of touch with the latest research, and gave us a very grim outlook.

[seabeyond]

16. mzmolly, i really do appreciate this. it has been years of me hunting looking

paying attention to his body and what it is saying. i am going ot do some research. appreciate the tip about magn. i know it intensifies with stress or lack of sleep. tested him with foods he eats and doesn't seem to be a part of it. there are other things too with him. tight jaw. could not take my nipple and late with bottle had a tough time. never could do chunky baby food and until he was 5 everyday he would eat something and choke, i would hold hand out and he would spit out. still to this day at 9 he cannot eat most meats without us cutting it up really really small. fine motor skills to the extreme scale of bad. slurred speech we have been working on, and much better, but still there. ...... otherwise, totally high iq that cannot be seen thru academic scales... teachers say so smart, but everything they "grade" is where he has deficit. we have gotten beyond that too. all teachers have really worked with me, so there is an acceptance in him that he is just different in these things, is who he is and accept so well. am impressed with his ability to love this part of him, without beating self up

anyway,. i am going to do some study, and if i have any questions i will certainly use you and come back on pms. i really appreciate.

[mzmolly]

24. Many neurological issues can look similar.

And, many kids don't fit neatly into any particular medically identified "box."

Here is more on TS.

http://members.tripod.com/~tourette13/

So sorry about how your son has "suffered" but, I'm thrilled he's doing so well and sees his own beauty. That is due to you in no small part!

[seabeyond]

43. problems with visuomotor integration, motor skill, and executive function

so i googled ts and fine motor skills. a whole lot came up. only on the second find and i am finding out so much. this is absolutely intwined with my sons tough time with his fine motor skill. and it appears a couple other things i am going ot take a look at cause i dont even know what it is. i really thank you mzmolly. talking to sons teacher end of this week, told her i have not seen doctor for so long, maybe time to go back in and start all over. and hten you hand me this. giving me a lot of stuff, that will be helpful.

[mzmolly]

44. There are places that specialize in occupational therapy for kids with

the related motor issues. My daughter has some mild related motor/sensory issues as well.

I hope you find the answers you need seabeyond. Please keep me posted.

Here is a great presentation by an expert on TS. It's for "newly diagnosed" kids and their parents, but I felt it was beneficial as well.

The Tourette Syndrome Association's website now offers a 3 hour webstream version of the Newly Diagnosed Seminar filmed at the TSA National Conference in April 2006. Dr. John T. Walkup, Division of Child and Adolescent Psychiatry at the Johns Hopkins Medical Institutions, and Chairman of the Tourette Syndrome Association's Medical Advisory Board, presented an all-day program attended by family members, professionals, and persons newly diagnosed with Tourette Syndrome. The program is recommended for viewing by families and professionals alike.

The webstream is divided into 3 segments of roughly 1 hour each, with video and slide show running in tandem. Viewers are able to download and print a slide handout. There are two online Surveys, for either Family or Medical/Professional viewers to complete. Family viewers are urged to share this video with members of their Medical and Allied Professional treatment team. The program was made possible through the continuing partnership of the TSA and the U. S. Centers for Disease Control and Prevention (CDC).

You can view the video when time permits here > http://www.medcentrus.com/TSANewDi1/content.html

My daughter does not take medication for TS and most kids don't "need" it.

Best wishes seabeyond.

[mzmolly]

45. Here is another website SURE to interest you.

http://www.tourettesyndrome.net/conditions.htm

http://www.tourettesyndrome.net/sitemap.htm

:hug:

[seabeyond]

gonna check these out. it is all so helpful. i have been discussing this

with son. i ask doesn't it feel good for all these things to be connecting and having an answer. they surely do.... pisses me off even more this wasn't found a while ago. i have talked to so many doctors connecting it all for them, and they didn't give me the answer. i am going to share this with my pediatrician for his future patients and with our school. lots of stuff to go thru. making much more sense. just feel so much better mzmolly. you did a good deed today. wink

[mzmolly]

56. My pleasure.

Just know that even if you know what's going on at times doctors are reluctant to dx. Tourette Syndrome. You may want to pursue seeing a neurologist if you have not done so?

Also - you may want to contact your local TS chapter for info on referrals?

Tennessee - Knoxville (AC) - 423-694-9006
Texas - Dallas/Ft. Worth, Lewisville (AC) - 972-219-6029
Texas - Houston (AC)- 281-493-5045
Texas - South Plains, Lubbock (AC)- 806-745-0584

Not sure which number you'd call, but here are numbers in your area.

As I said, some of the issues you note, are not "directly" related to TS, but can be indirectly related. And, I know that aspergers and other neurological issues do have tic-ish behaviors associated so keep that in mind as well.

Take care, and keep me posted if you have time.

[seabeyond]

59. we took son to a neurologist in lubbock. i think he is a good place

to start. will let you know.

[tavalon]

66. Yeah, my kiddo who also has autism

Is developing Tourettes on the eve of his teenagerdom. We are trying to evaluate whether it's another manifestation of his temporal lobe seizures but if that doesn't pan out, Tourettes will be the default diagnosis. He has so many difficulties, we aren't going to get hung up on this one. I wish more we could help him with his OCD, that one is a lot more difficult for him and us. Developing more self directed speech would be number two on this list.

[mzmolly]

69. I find it interesting how many issues are somewhat "related."

I know that stereotypies is the term for tics associated with PDD, perhaps you've considered this possibility already?

Here's some info if you're interested?

http://www.tsbvi.edu/Outreach/seehear/archive/mannerism.html#Chart

http://tourette-syndrome-now-what.blogspot.com/2005/12/tics-stims-and-stereotypies-tourettes.html

I wish more we could help him with his OCD, that one is a lot more difficult for him and us.

I'm not sure to what extent he is communicative? But I know that cognitive techniques are very successful in the long term with OCD. I have a couple books to recommend if you're interested?

Here is the book I'm reading now.

http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?z=y&EAN=9780967734712&itm=1

Best wishes to you and your son. :hug:

[MadHound]

6. Yeah, Tourette's isn't usually about the cursing.

I guy that I worked with had Tourette's, and while he had no tics, he would constantly make a noise that is a cross between a cough and throat clearing while talking. No big deal, it effected conversations very little and the man was an absolute genius in his field. The real shame with him was that he got a stroke in his mid-50s that effected his right side fairly severely. An avid gun collector, he had just bought a BAR that he has never gotten to fire.

[mzmolly]

8. The best man in our wedding had TS, we never knew it. I never noticed a tic?

:shrug: he told us when our daughter was diagnosed. He, like most people, outgrew the condition in adolescence for all practical purposes.

[rubberducky]

9. I have a very good friend whose daughter has this.

Her daughter had some very, very bad episodes when she was young. My friend went through a nightmare with her, but never gave up on seeking the latest treatments. Today, at 18 her daughter is a truely beautiful young woman graduating from high school(with a lot of turoring to keep her at grade level). She seems to have left the worst parts of this disease in teen years. Lately she has even recieved her driver`s license. This brave young lady has truely been to hell and back. I feel privileged and proud to know this young woman and her family who fought so hard for her to reach this pinnacle in her life!!

[mzmolly]

11. It is said that Mozart had TS.

Your friends daughter sounds like many kids with TS. The "worst" of the tics are generally from the ages of 8-12, they taper off in adolescence and most no longer qualify for a TS diagnosis in adulthood. Unfortunately for many the tics are the least troubling, it's the co-morbid OCD, ADHD that can be a greater issue.

:hi:

[antigop]

17. Yes, mzmolly, the OCD (in family member's case) is the bigger issue

It can really prevent a child from living a normal life.

[mzmolly]

27. There are some great books on CBT techniques if interested?

Feel free to PM or ?? and I'll get the info to you. CBT is said to be as helpful as meds, and more permanent.

CBT = Cognitive behavioral therapy.

[rubberducky]

10. K&R

[mzmolly]

12. Thanks.

:)

[antigop]

15. Family member has been diagnosed with a nervous tic, but not Tourette's

It can been very hard on a child. Kids can really be mean.

(Then again, some kids can be very sweet and accept others as they are.)

[mzmolly]

20. Most researchers are now coming to the conclusion that "tics are tics"

and are seen as a marker for other possible neuro conditions. TS is kind of an arbitrary set of conditions set my researchers - or so I was told by a "researcher." ;)

Just wanted to note that. :hi:

[seabeyond]

26. last year second grade son went into noise. told the teacher he cant

stop it is the tics going into his vocal. she was so thankful that i told her. it was end of first grade that we got to the place his issue was tics. she was able to know that it was not him trying to be disruptive and made all the difference in her handling of jonas. no confrontation from teacher but a working with him. third grade teacher i put it right up front that he uses noise sometimes, and he really cannot control it. along with his issue of fine motor skill teacher has brought it up in front of class. son said when she explained it to class, made him feel much better.... and allowed the class to be more sympathetic, instead of insulting. they all embrace it and no teasing. i like the way the teachers have been so good to son. makes all the difference in the world

[mzmolly]

14. Dan Akroyd comedic genious and Tourette Syndrome "surviva"

Dan Ackroyd (1952 - )

It's hard to know what accomplishment to mention first with Dan Ackroyd -- his performance in The Blues Brothers, his role in Ghost Busters, his comedy in Saturday Night Live, or House of Blues, where people can hear great blues music. This talented actor, musician, screenwriter, and comedian grew up struggling with symptoms of Tourette's and Asperger's Syndrome. You can hear Dan talking about how these conditions affected him in an interview he gave on NPR.



LINK > http://www.schoolbehavior.com/inspiration.htm

If you listen to the interview, Mr. Ackroyd was greatly misinformed about TS and has not kept up with accurate information, but it's a fascinating interview none the less.

:hi:

[IndyOp]

33. THAT is a cool site! SchoolBehavior.com rocks!

I teach "Learning" in a college psych department and my biggest challenge is getting "dry principles of behavior" to come alive. I like her Behavior Modification assessment documents and examples very much!

:hi:

[mzmolly]

37. It IS an awesome site.

You're most welcome, I am so glad to be able to share and have some interest in this thread! :)

[SPKrazy]

18. By That Definition I've Had It

I had motor and vocal tics at age 11 coughing, shoulder shrugging and blinking thing.

My parents just made fun of me for it.

I still get "ticky" when I'm nervous, or with family (wonder why)

[mzmolly]

21. Wow, indeed it would appear that you are like many/most who have TS.

Many simply don't know they have it?

:hi: Sorry that your family made fun of you. :( I bet it was there way of coping, though not the best way.

[SPKrazy]

23. Yeah, I knew I had tics

just didn't know what to do about it and I guess they didn't either

:hi:

[mzmolly]

25. We just ignore the tics when they "flare up."

;) In all honesty I don't even notice my daughters tics anymore? Unless they bother her, that is.

They don't make any meds specifically for TS, so most of the side effects are worse than the tics according to many I know who've taken the meds. We do take a cal/mag supplement and that is helpful. Also OCD is related and my daughter has a "mild" case, so we take Inositol (a B vitamin) to take the edge off. And, we try to eat lots of fruits and veggies, without making a big deal out of stuff.

It's good you weren't put on anti-psychotics like many kids who have a proper dx. I do wish you had more understanding, however. :hug:

[SPKrazy]

32. Thanks

I've come to understand that my parents just didn't know what they were dealing with. Their way to deal with it was to exaggerate my symptoms and mimic them back to me when they saw me doing it.

I learned on my own how to take these tics "underground" so to speak. I take an SSRI for anxiety, depression, and a form of OCD now too.

I wouldn't have wanted to be on anti-psychotics nor do I know they would have done that when I was a kid. At age 45, I have some flare ups as I said occasionally. Usually when I've been around my family of origin. Some other times too.

Mostly I ignore them, or subvert them the way I've done in the past.


:hug: :hug: :hug:

[seabeyond]

34. i really feel the need to acknowledge them with my son

i will see the eyes blinking and rolling. tongue going. where ever the tic is. a lot of times looking thru rearview mirror after picking him up from school. i will make a neutral comment, your tics are really going arent they. and he will acknowledge. just feels like i have to recognize what he is experiencing. would never think to tease the behavior away. i am glad you are able to put it in its place now. and understand parents just didnt know what to do. but man...... lol. we never tease to make another less though. just not something that is allowed in this family. i have seen other families do it. brother tells me teasing isnt bad, that it toughens kids up for the world. i dont agree. i figure the tease is taking a little of the truth and being hurtful. not my thang.

[SPKrazy]

35. I agree, Teasing isn't the solution

it is hurtful and didn't help the problem at all

[mzmolly]

36. Many people learn the "underground" trick eventually. At times I wonder

if the tics really subside, or if some just learn to manage them? To my understanding the tics can "explode" if they are suppressed for long periods in some?

Thanks for sharing your personal story SP. :hi:

[Branjor]

19. I started with a facial tic when I was about 7....

It was *cured* with arsenic, prescribed by the doctor. This was in the late 50s.

[mzmolly]

22. Woah?

That is mind boggling. :wow:

[Branjor]

28. Yes....

I had the tic, then took the medicine and after a while the tic went away. I don't actually know if it was Tourette's as it wasn't diagnosed at all, but then I guess a lot of this stuff went undiagnosed in the 1950s. Learning later how poisonous arsenic is, I was very surprised that it was prescribed. Interestingly, I did develop OCD at about age 12 and it lasted in a fairly acute form into my early 20s. I still have remnants of it today, but not enough to affect my life.

[mzmolly]

38. I think in lesser doses it was used medicinally for many things?

Researchers are beginning to realize that "tics" are tics and are related to OCD etc. A TS dx is based on an arbitrary criteria set by researchers anyhoo. So, a tic is a tic. Some last longer and are simply more "interesting." ;)

Thanks for sharing, I really appreciate your contribution. :hi:

[mzmolly]

39. I think after some research I figured out your situation:

What is Sydenham Chorea?

Sydenham chorea (SD) is a neurological disorder of childhood resulting from infection via Group A beta-hemolytic streptococcus (GABHS), the bacterium that causes rheumatic fever. SD is characterized by rapid, irregular, and aimless involuntary movements of the arms and legs, trunk, and facial muscles. It affects girls more often than boys and typically occurs between 5 and 15 years of age. Some children will have a sore throat several weeks before the symptoms begin, but the disorder can also strike up to 6 months after the fever or infection has cleared. Symptoms can appear gradually or all at once, and also may include uncoordinated movements, muscular weakness, stumbling and falling, slurred speech, difficulty concentrating and writing, and emotional instability. The symptoms of SD can vary from a halting gait and slight grimacing to involuntary movements that are frequent and severe enough to be incapacitating. The random, writhing movements of chorea are caused by an auto-immune reaction to the bacterium that interferes with the normal function of a part of the brain (the basal ganglia) that controls motor movements. Due to better sanitary conditions and the use of antibiotics to treat streptococcal infections, rheumatic fever, and consequently SD, are rare in North America and Europe. The disease can still be found in developing nations.

Link here: http://en.wikipedia.org/wiki/Fowler's_solution

And > http://en.wikipedia.org/wiki/Fowler's_solution

Fowler's solution is a remedy (or a tonic) that was originated by Dr. Fowler of Stafford, England in 1786 as a substitute for a patented medicine, "tasteless ague drop". It was prescribed in the United States until the late 1950's for a range of ailments including malaria, chorea and syphilis.

Fowler's solution, also known as "Liquor Potassii Arenitis", Kali Arsenicosum or Kali arseniatum, is a 1% solution of potassium arsenite.

The chemical formula is KH2AsO4.

What's also interesting is that some feel that TS can be "triggered" by illness such as strep throat in those genetically pre-disposed:

http://www.alertpubs.com/pandas.htm

Childhood Disorders and Strep Infection

Children with obsessive-compulsive disorder, Tourette's syndrome, or chronic tic disorder were more likely than controls to have had a recent streptococcal infection before onset of these disorders. This finding lends support to the proposition that neuropsychiatric disorders can arise or partly arise as a result of a post-infectious autoimmune phenomenon.

I know that some with tics are getting botox injections for chronic/repetitive tics?

:freak:

[Branjor]

54. Hey thanks for the info!

That sheds more light on it, though the Sydenham chorea symptoms sound a bit more extensive than what I had. Maybe the medicine stopped the symptoms from developing any further, for which I am very grateful, but if we had known how dangerous it was I doubt that the doctor and my mother would have given it to me. Significantly, one effect of the Fowler's solution is skin cancer, and I did have a small growth removed from my hand by the same doctor when I was a teenager. Again, it was undiagnosed, but I saw an exact picture of it in a medical book a few years ago and it was identified as cancer :scared: However it has never recurred and I am 54 now :) Also significant is that my father had Sydenham's chorea as a child and his sister had rheumatic fever.

[mzmolly]

55. Wow, I bet your right.

Whatever the condition, it was caught soon.

Very interesting story Branjor. I read that smallish doses of arsenic were used medically for 2500 years!?

[Auntie Bush]

64. So is that adorable dog. He/she looks like a stuffed toy.

[Branjor]

65. Thank you!

That's my little guy Jordi (1988-2004), my heart dog, gone but *never* forgotten. Quite a few people have said that he and his little sister Brandy looked like stuffed animals, but both are quite real!

[Auntie Bush]

70. Oooh! I'm sorry to hear that.

That's just too sad to hear. :cry: :hug:
My cute little JR is 15 and isn't doing well...so I'll probably be in the same situation all too soon. :cry:

[Branjor]

77. I am so sorry to hear that....

Just hold and love your little JR and do everything you can to make him happy and comfy. Every day is special with him now. :hug:

[uppityperson]

29. thanks and here is a recommendation. Could we get 3 more please?

[seabeyond]

30. recommended

[mzmolly]

61. Thanks so much for your request.

We got 10 recs! :toast:

[uppityperson]

67. good job, I forget sometimes and always appreciate others asking.

[Sugar Smack]

31. A girl I studied with in Paris had TS. She "barked".

It wasn't often but the first time she did it startled us. She had a really good way of handling herself; she covered her mouth briefly afterward as though it had been a belch or cough. The rest of us caught on to it quickly and then sort of treated it as same.

Thanks for the info!

[mzmolly]

40. That's a fairly common tic? But, as you said many can "cover"

for their tics in very creative ways. ;)

I saw a girl at the check out counter at our local grocery store. She was squeaking and a kid she worked with asked her what "that sound" was and she said "I don't know, it's just something I do?" She didn't seem troubled by it and her and her friends just laughed it off.

:shrug:

[mzmolly]

41. Thanks to all who recommended this thread!

:yourock:

[Gelliebeans]

42. My son's friend

has tics. They have been best friends since they were little. The tics got worse during his parents divorce. I have always treated this boy like he was my own and I took him under my wing and he spends a great deal of time at our house. Recently the tics have become less noticable which might be due to his age.

[mzmolly]

46. Stress can cause an 'up-tic' in tics.

And, as you note - age can be a factor as well. :hi:

[The Flaming Red Head]

47. Sounds like the side effects of a lot of anti-psychotic meds

Haloperidol, Chlorpromazine etc. will all cause extrapyramidal reactions which are symptoms just like those described in the article.

Ever heard of the Thorazine shuffle?

[mzmolly]

50. Indeed, the symptoms can look similar.

:hi:

[unblock]

48. i hired someone with ts once

neither of us knew he had anything other than a pronounced stammer.
i could tell it was the sort of thing that puts people off. fortunately i knew enough to look past it and found him to be a smart guy. he was also grateful for the job as it turns out that yes, indeed, interviewing was a very discouraging process for him.

at some point he got it checked out and was told it was ts. this was to be considered "good news", because of all types of stammers, ts is now the easiest to treat. he just started taking pills and the speech improved.

[Stephanie]

49. my friend Lowell wrote this book, "Twitch and Shout"

He's a lovely guy, too.

http://www.amazon.com/Twitch-Shout-Touretters-Lowell-Handler/dp/0816644519/sr=8-1/qid=1168722142/ref=sr_1_1/002-5481416-3035268?ie=UTF8&s=books

[mzmolly]

52. I read his book and saw the "Twich and Shout" documentary with him as well.

He really opened himself up, and it was very interesting/helpful to have a look inside his experience. His book was the first I read after my daughter was diagnosed.

Thanks for posting this link, Mr. Handler was really a pioneer in pressing for understanding. :hi:

More about Lowell Handler >

http://faculty.sunydutchess.edu/handler/

Twitch & Shout: A Touretter’s Tale was profiled in The New York Times Book Review, and called by Entertainment Weekly "A mind-bending account of a mind-boggling affliction." The author's other written work has been published in The New York Observer, Health, and the American Psychological Association's Contemporary Psychology. Lowell was the technical consultant and set photographer on the film Niagara, Niagara starring Robin Tunney and Henry Thomas, the still photographer and advisor on The Tic Code, starring Gregory Hines, and the inspiration for Rob Morrow's directorial debut Maze and Jonathan Lethem's touretting detective in Lethem's novel Motherless Brooklyn.

I have seen The Tic Code and read his book, but plan to check out these other movies, novels as well.

[Stephanie]

57. interesting gossip - his brother Evan was a regular on Sex & the City

He played Charlotte's (second) husband. They're a talented family. Lowell is a photographer.

[mzmolly]

58. Wow.

Very interesting! Any relation to Chelsea? ;)

[bamademo]

51. I have GWB induced Tourettle's

Every time I see him or hear him speak I want to cuss a blue streak.

[mzmolly]

53. Tsk, tsk.

My attempt is to educate people to the fact that Tourette's is not generally associated with cussing. ;)

[bamademo]

76. I know but I couldn't resist.

Sorry. :-)

[DarkTirade]

60. I know someone who has it...

his main symptom is vocal, but not words. It's an involuntary laugh that pops out a lot. Thankfully he hasn't had to go to any funerals lately...

[mzmolly]

62. I don't have TS, but I have laughed at funerals and weddings.

I generally pretend to cry and bury my face in my hands. ;)

[DarkTirade]

63. Yes, but his is VERY recognizable as a laugh, so I doubt that would work.

Then again, ever since he's stopped being a pushover and started standing up for himself the last year or two, he's gotten used to people thinking he's a bit of an ass and it doesn't bother him anymore. :)

[mzmolly]

68. I think maintaining a sense of humor about life is helpful?

Bravo to your friend for learning to assert himself!

[SanCristobal]

71. I'm glad to see this thread.

I have Tourette's, and am mildly annoyed by cursing disease stereotype. Although I had some pretty bad ticks during my early teens, coprolalia was never one of them. Luckily my tics largely stopped by adulthood, the ones I still have are usually unnoticeable.

Even when people know about Tourette's, understanding it can be a completely different matter. A friend of mine refused to be a character witness on a pistol permit application because it required a legal statement that he believed I wasn't mentally ill. I was incredibly hurt by his ignorance, particularly since he was working towards a psychology degree at the time.

The best way I know to show someone what Tourette's is like is to have them to take a deep breath and hold it for as long as possible. While they feel the pressure to breathe, I explain to them inability to completely suppress tics and the great difficulty of trying. You can do it for a while but it will eventually happen again, regardless of your wishes. Having someone actually hold their breath while I say this gives them a little more understanding of what it feels like to live with this disorder.

[mzmolly]

72. Thanks so much for sharing.

I've heard it can feel like an urge to sneeze or a hiccup? My daughter describes it as a bit of a brain hiccup to friends. I'm holding my breath now .... :hi:

PS I am so sorry about your friends IGNORANCE. My intention posting this thread was to raise awareness. I plan to continue to do so when opportunity presents itself.

[SanCristobal]

73. Thanks for starting this thread and helping!

I was the first student in my school district to be diagnosed with Tourette's, and no one knew what to make of it at the time. The Tourette's Syndrome Association provided some good material to help teachers understand what was going on, but it was still a learning experience for my educators.

The upside of this was that by the time I graduated high school, everyone I had learned under knew what Tourette's was and had some first hand experience with it. That made it that much easier for the TS students who came after me.

[mzmolly]

75. Very nice.

It's amazing to think about how far the TS community has come in recent decades. Thanks for your part in making things "better" for others.

:hi:

[kdpeters]

74. Recently consulted in a children's psychiatric hospital. Boy, did I learn a lot.

I learned much, much more than I contributed. tourette's and tics, autism, hyperactivity and learning problems, depression, PTSD, psychosis, anorexia and on and on and on. And i learned that there are appallingly scarce resources to help these children and their panicked parents. And this hospital had long ago refused patients whose insurance couldn't be verified or who couldn't self pay upfront -- and there was only one other psychiatric facility for children in the entire region. Our clinicians gave of their hearts and souls, but our waiting lists were always several months booked in advance.