monkeygirl

I totally agree -- I think regular (but FUN) exercise is very important for Tourette patients.

Wow! That's wonderful! I wish my blinking could be cured so easily!!!

That's alot of DHEA to take. How old are you?

Thanks, everyone, for such support! It's nice to be able to talk about it after all these years. I remember only having copralalia around the age of 5 or 6..... the echolalia came and went in the following years once in a while. I've noticed my thought patterns tend to have echolalia -- does that make sense? I think it also has to do with why Tourette's patients are often gifted musically -- you recognise and repeat patterns incessantly in your head. It's often diagnosed as OCD, but I can't say I have that. I do become all-consumed by something if it intrigues me. I also was quite a punk rocker in the late 1970s/early '80s -- the lack of inhibition was exhilarating -- and freeing. I mean, if it's not socially unacceptable to say "F*** you" to authority, then a tourette's patient won't find the need to do it, right? Tourette's is very much a disease of inhibitory response problems....if you feel free to be as punk as you want, it does something. This gets more and more convuluted, if you think about it too much... Family links? I believe my older brother had a mild case -- he rolled his eyes all the time, still does. My younger sister was extremely OCD, with extreme night time rituals and handwashing and all the classic symptoms. My family was in denial about everything, so my siblings weren't diagnosed officially. I guess my case was hard to ignore I don't think I had ADHD. I was always able to practice my piano for many hours a day, even at a young age. It was soothing to work on a problem over and over until it smoothed out. However, I had trouble sitting still through movies or concerts; it's still hard for me to sit still now, but I find regular exercise really helps this. Haldol and the other drugs were a nightmare for me, too! I'm glad your son is happy off them.

"At what age were your vocal tics maximum?" Actually, I remember having them at around 5 and 6. The echolalia lasted longer than the coprolalia. "Do you still have vocal tics?" Not that you would notice -- we touretters "mask" pretty well -- I've had alot of throat-clearing/glottal stop sounds for the past year, but I try not to do them when anyone is listening. "How did you manage at school and in public with echolalia and coprolalia? For how long and at what age did you have it?" I wasn't in school, I was too young. I said alot under my breath, over and over -- my mother would over-hear me and ask "What did you say?". I'd reply "Nothing". She had 4 other kids, so she didn't notice that much -- or was just too busy to worry about it. "Did coprolalia affect you as such? How frequent was it?" OK -- at 5 the worst word I knew was "penis". I would say it over and over under my breath. "Did you take any medication for tics? If so, which medications did you take? Or did they remit on their own?" I took Haldol twice -- both times theside effects were unbearable -- I always felt the drugs were way worse than the disease. I also did Clonidine, Ritalin, perhaps some others -- I chose to not take medication in the end, much to my mother's chagrin. "Are your tics noticeable to your friends, family (husband) etc. " Yes. In my late teens my tics calmed down quite a bit, so I'm able to "mask" many of them. But the blinking/facial twitching is obvious. My friends tell me that when they first meet me they notice the blinking/twitching. But after getting to know me they just don't see them anymore. Which is interesting. "How does your husband manage your tics?" Manage? Why? He doesn't have any tics. I just asked my husband -- he said he doesn't remember being especially struck by them, just thought I had a tic. In fact, he said that he felt at times he'd even start unconsciously doing my tics himself -- he remembers being on a date with me, and me asking "Are you making fun of me?" I've had other friends mention that they'd started unconsciously blinking their eyes alot when they were aroundme. Preverbal children tend to mimic me, too -- I believe as a way of communicating -- it's really interesting. The way humans bond and communicate has so much to do with subconsciously acting the way others do -- we "mirror" each other socially. As an adult, I "mask" alot. I get very embarrassed when I don't know someone's around and I give free rein to my grunts or grimacing -- but, oh well, what the ######, at a certain point you just have to move on. After watching videos of myself, I have to say I've gotton very good at not ticcing while I'm aware that anyone is watching me, or I'm looking someone in the eye. In my late teens/early twenties I decided to "stop being a professional Tourrette's patient" -- withdrew from the UCLA research and therapy program, refused all drugs, looked into alternate healing, and move on with my life and career. My doctor offered to put me on disability at that time, and I said no. I've always let people know I have Tourette's if they ask, but I had so much more I wanted to do. I had no trouble after that with dating (dated few well-known actors and musicians, thank you!). Have I found any alternative treatments that help tourette's? Besides enough sleep and stress reduction, no. I feel that I'm hard-wired this way; it's not a matter of supplements, fasts, cleanses, etc.... (all of which I've tried). Am I coping well with it? I don't know -- I guess so. It's terribly depressing and embarrassing at times. But I guess I've done well enough. But, really, I can't stress enough -- the best gift you can give a child with Tourette's is to keep it all in perspective. Those of us with disabilities tend to over-achieve in other areas. Which can make us very interesting people. Hope that helps --

"Did you have vocal tics too?" Yes, echolalia and, for a brief time, coprolalia. "Did you have any OCD symptoms?" Ummm... perhaps a bit. I've always been a very determined, stubborn person. Once interested in something I'm obssessive about learning everything. It has served me well in my life. "Did TS affect your academic/career life in anyway?" As I understand it, most Tourette patients have higher-than-average IQs -- I was told I did. I was extremely shy (understandably), but excelled in music. You probably know that tics stop when one plays an instrument -- very soothing. I did well in school, was a classical piano protege through high school, won a music scholarship to USC, did well there, then dropped out to tour with a rock band. Spent over 10 years in the music industry, touring, recording, etc... had wonderful experiences. Did have trouble sometimes when I'd be up on stage, nervous, and the cameras would focus in on me -- I have some videos with quite a bit of footage of me ticcing away..... I continue to make a living as an artist. I wish I didn't have it. Can I imagine not having it? No, not at all. It's part of who I am.

Hi -- my first post! I'm a woman, 42, and have been chronically "blinking" since about 4th grade. FOREVER!!! My tics were the worst when I was a kid, they mellowed a bit once I hit college age -- but never went away. I had lots of other tics, but the blinking remains the most obvious. It's embarrassing, yes.... people mock you, mimic your blinking, if they're particularly insensitive. If I don't want to be bothered, I just tell people my contacts are dry. But often it's best just to look right at them with a big smile, and say "I have Tourette's Syndrome". At least people know what it is now! It's almost glamorous.... My worst memory: my mother, god bless her, telling me to "stop doing that!!!" or "You're just doing that to bug me". I wasn't diagnosed properly until 10th grade, and until that time 8 different doctors ran tests on me and came to the conclusion that I was emotionally disturbed. So she was at her wit's end, I guess. But, try as I could, I just couldn't stop "ticcing" for long. I now have a 4-year-old that I'm watching for any signs of tics. If she starts, I want to be SURE to help her to feel like it's no big deal -- make jokes with her about it. Because, honestly, it's NOT cancer; it's annoying, painful sometimes, socially challenging -- but not terminal. Please remember that, and don't make too big a deal out of it. It was harder for me to watch my mother suffer the embarrassment over my tics than it was to actually have Tourettes. In the Tourette's Syndrome group therapy program at UCLA in the late 1970's they used to tell me I was the "one with the cute little wink". I liked that. Please -- the best gift you can give your daughter is to not make it a big dea. Be there for her when she needs to cry about it, but also be there to laugh with her.