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Hello, from Maine.

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  • Hello, from Maine.

    Hi Everyone,

    Lately I've been thinking how it'd be nice to have some friends to chat with on occasion who also suffer from TS. I'm a 24 year old Electrical Engineering Technology major at the University of Maine, and my TS frequently interferes with daily living (as I'm sure some of you can imagine). At the risk of sounding pathetic, one of the biggest problems is that it's extremely lonely. My TS didn't used to be quite so bad when I lived in my home town where I grew up. I went from being very popular to very... alienated. Anyway, it'd be great to just chat once in a while with someone around my age or older who might be able to relate and perhaps even impart hope for what often times seems an inevitably grim future.

    Are any of you college students or college graduates who struggle with TS and have a family (or significant other) of your own?
    Last edited by Steve; November 12, 2007, 01:41 PM. Reason: Edit for personal info content

  • #2
    Re: Hello, from Maine.

    Welcome TSGuy

    I you are lonely then you made the first step in the right direction. We have lost of people here who live to chat via this forum. This being a long weekend there is less activity. Keep checking in and I am sure you will find people in your age category.

    I have TS as well and I know how things can impact on a daily basis. Are you challenged with the tics or do you have associated disorders as well? The ADHD is what impacts me most of the time.

    TSFC Homepage


    • #3
      Re: Hello, from Maine.

      Hi TSGuy:

      I'm glad you have found us.

      Have you been at the university for very long?

      Do you think you feel more self-conscious about your symptoms now that you are at university, and that is holding you back from making friends?

      I am the parent of a college student with TS, but don't have TS myself, so I can't relate my personal experiences. I know there are several people on the forum who have been through university or college and who have TS who can speak to your questions better, so I'll leave it for them to relate their own experiences.
      Forum Moderator


      • #4
        Re: Hello, from Maine.

        I went from being very popular to very... alienated
        Welcome to the TSFC Forum, TS Guy! The person in you who was very popular has likely not changed much, although your own percept on of that person may have.

        There's no reason why a person with Tourette cannot socialize and develop meaningful relationships. The key, particularly if your Tourette happens to be especially expressive, is to communicate and familiarize your acquaintances with your disorder.

        There are several strategies you might use.

        One is to carry a printed brochure produced by one of the Tourette advocacy groups such as the TSFC or TSA.

        Another similar brochure is available at NIH.

        Many people use these as a visual aid, while describing their Tourette, highlighting such aspects as "being involuntary" and "genetic neurological disorder".

        The whole idea is to allow your acquaintances and friends to be at ease with your disorder.

        After that the great person who you are will override any attention to the expressions of your Tourette.

        As you well know, we hear all the time about people with severe inabilities and disorders not allowing their condition from pursuing career choices and relationships.

        Just this week I watched the story of conjoined twins in the Mid West who are now 16 year old young women who are highly regarded by their classmates and teachers, as well as their community. In the documentary I saw, they had just passed their driver's license.

        Kim Peek, the developmentally disabled man who inspired the Dustin Hoffman movie "Rain Man" said, Disabilities don't make you different, because everybody is different. (paraphrase)

        Kim, just like all of us, has things that he is good at and things that he is not good at. What is remarkable about this man is that he spends his time using his gifts, the things he CAN DO, to improve the quality of life for all of us.

        Don't sell yourself short. You are still the same person you were when you were "popular".Use the things you can do well to make a difference. :Two ThumbsUp:
        TouretteLinks Forum


        • #5
          Re: Hello, from Maine.


          I was diagnosed with some other associated disorders when I was very young. I'm convinced, however, that they were all false diagnosis. I had a very rough childhood which consisted of always being on different medications, many of which were considered "experimental." I believe that the side effects of all these medications combined with an underdeveloped mind caused most of if not all of the symptoms which led to my diagnosis of OCD and ADHD, etc (I don't honestly remember them all).

          When the medication stopped, I slowly but gradually got better overall. Going through maturity is hard enough for emotionally distraught adolescents and teens. Medications to treat Tourette's, originally created to treat completely unrelated mental conditions, is unquestionably hazardous to a growing mind. I'm personally against medication to treat TS except in extreme situations where the tics cause severe bodily harm.


          This is my third year here as a university college student. I'm technically a sophomore because I can only handle a reduced course load (mostly because of my TS.) I take courses year round (through the summers) to compensate for some of this reduction.

          I think I've always been self-conscious. It seems to bother me more now than it did before, because I'm getting older and am beginning to wonder what kind of future is ahead of me. I can't help but ask myself, is this it? Am I always going to be alone, misunderstood, and desperately clinging to one distraction after another until the end of my days? At the risk of seeming emasculated, I desperately long for meaning in my life. At the age of 24, I doubt I'm old enough to be experiencing a midlife crisis, but I find myself often feeling as if the world is spinning all around me while I'm the only thing on it that's remaining completely still. The people I went to high school with are mostly married and with kids. All my cousins are married and some with kids. My two sisters, one married and both with kids. And just recently my brother called me up to announce his wedding and ask me to be his best man. Everywhere I look it seems people are so happy and with friends or significant others. Having once been popular with the opposite sex and with an ample supply of friends, I am constantly reminded of the truth behind the expression "ignorance is bliss." To some extent, I wish I never knew what it was like to have any friends or to have been loved by a significant other. You can't long so deeply for something you've never had, right?

          To a certain degree, I've always been aware of the obstacles I'd face in my life. I can distinctly remember being a young adolescent at the age when most kids seemed to dream of being an astronaut, an actor, a firefighter, a policeman, or even president. While these kids were exploring their imaginations by invisioning themselves being something that they viewed as the pinnacle of achievement or of society, I was doing the same, but instead of dreaming of being a fireman or an astronaut or any of these other things, I spent most of my time imagining myself living a happy life by raising a family of my own. I imagined myself having a beautiful wife and 3 beautiful children. I imagined being able to support my family with a degree of financial comfort that my family growing up had only experienced for a few short years. Perhaps most importantly, I imagined myself sharing the same unconditional love with my family that my mother shared with me when I was a child and she was an only parent. But also the little things, like seeing your child's first football game, taking him/her to school their first day, witnessing them go off to college and ultimately retiring to live out the rest of my days as a high school football coach and a loving husband. Oh, and I can't forget to mention the Sunday get togethers where I'd start my day by plowing the snow from the driveway with my 4-wheeler and my handy dandy 6-pack of beer before my buddies would come over and we'd drink beer and watch the games, while the wives went off to do their own thing (but be back in time to cook us all supper ha! ;) ).

          Anyway, a large part of me just needs hope. Are any of these things possible or am I wasting energy dreaming of the impossible? Am I wasting time in college so that I can ultimately get a high paying job to support a family that I'll never have? Am I wasting time in the gym, trying to look attractive when I couldn't possibly attract a woman of the same species (who knows what kind of mating calls my vocal tics might sometimes sound like)? Most importantly, am I wasting everyone's time by asking these questions and seeming so dramatic?

          I mean, I know there are a lot of people who have life far worse than me. A part of me feels that I should just shut up and stop bitching, and be thankful for having had brief periods of comfort and happiness. I know what questions inherently come to mind, but I don't know whether sharing them with others or even feeling the way I feel about my life is justified. I can easily look at someone (to borrow an example that everyone probably knows about) like Brittany Spears and say to myself, what the hell does she have to be depressed about? She's attractive, successful, loved, wealthy, famous, etc... But I realize that she probably doesn't know how fortunate she is because she's probably never had to endure the normal life of low income, unpopularity, or a less than fortunate genetic inheritance. Are her complaints any less justified than my own? I think a wise individual would say "no." So how can I feel really justified in posting any of this or in feeling deserving of any kind of support?

          My tics are mostly vocal noises, not words. They are extremely embarrassing. I have some motor tics, such as twitching, eye blinking, and other sudden movements, but these are comparatively easy to live with. The worse part about my TS is that it seems self sabotaging. For example, I can for seemingly long periods of time in the privacy of my own apartment without any loud or particularly troublesome tics. It almost seems that I can go for some periods (about 10-20 minutes or so) without ticing at all. This may be just because I'm not aware of my own tics when I don't feel the need to try to suppress them or the hindering fear of rejection. I notice the same thing when I'm in the company of someone I really wholeheartedly trust, like my mother or 1 friend of about 8 years (he's about 40 years older than me so it's not the "drinking buddy" or "sunday football" kind of friendship - more of a "call once a month just to catch up" sort of friend). Around them I hardly tic at all compared to when I'm in class or on campus.

          Okay. This post is probably already too long by some standards so I'll stop here. I apologize for the rambling. Thank you for taking the time to read.


          • #6
            Re: Hello, from Maine.

            I had a very rough childhood which consisted of always being on different medications, many of which were considered "experimental."
            Your implication is that medications that are in clinical trials are potentially dangerous. If you were indeed involved in a clinical trial, you would have been advised of the benefits and risks of the trial drug.

            Medications undergoing phase IV clinical trials (human trials) have undergone extensive laboratory and animal trials, and the safety of the medication in humans has been evaluated, approved and monitored by regulatory agencies, the hospital as well as the physician conducting the trial.

            In other words, people involved in clinical trials are not exposed to unnecessary risks, because if any unexpected risk is detected, the trials are immediately halted.

            Medications to treat Tourette's, originally created to treat completely unrelated mental conditions, is unquestionably hazardous to a growing mind
            I am not aware of any evidence to support that correlation. It is true there are no medications to date specific for treating Tourette Syndrome and the medications currently in use were originally developed to treat other medical conditions.

            However through sound clinical evaluation, with findings published in reputed peer reviewed scientific journals, various medications have been found to be effective in treating some aspects of Tourette Syndrome.

            In some cases, the indications listed in the product monograph, the official prescribing document filed with regulatory agencies have been updated to include Tourette Syndrome.

            In most cases the dosing to treat Tourette is different and much lower than that used to treat the original indication of the medication in question.

            Medications used to treat Tourette by clinicians with clinical experience in the treatment of Tourette Syndrome are not used haphazardly, but rather are used consistent with accepted scientific norms.
            TouretteLinks Forum


            • #7
              Re: Hello, from Maine.

              I'm not a doctor. I was only speaking to my personal experience. Some medications made me very tired, some too hyper, some easily distracted me making it hard to concentrate, some made me act or feel differently when responding to daily situations, and all took a toll on me in the sense that everytime I was told to take another pill, I was reminded of the fact that I wasn't good enough and that everyone wanted me to change. I never wanted any medications. I only wanted acceptance. I didn't mean to imply that any medications caused any permanent or life threatening damage.

              Your response seems somewhat defensive about medications. If what I typed is inappropriate or misleading, then please edit it out of my post. You can delete the whole thread if you'd like. Your response wasn't what I was hoping to receive. I think I may have made a mistake by posting this thread. I apologize.

              Edit: I'd delete it myself but I can't find the edit button for old posts... can any of you administrators please delete my previous post? (The one prior to this one. The long one.) Thank you.
              Last edited by TSGuy; November 14, 2007, 12:33 AM.


              • #8
                Re: Hello, from Maine.

                Welcome TSGuy!

                You seem like you have a good head on your shoulders, know what you want out of life and how to get it. Don't sell yourself short. Not many 24 year olds have the maturity that you seem to have.

                It can be difficult for most people to move away from home and start a new life TS or not. Are there any groups or clubs on campus that you have an interest in? Perhaps that may be a way to meet others who share similiar interests.

                Don't give up on your goals..keep plugging along and when you least expect it you will meet the one for you.


                • #9
                  Re: Hello, from Maine.

                  You post is actually quite insightful and can be informative to Forum members.

                  You brought up a couple of points that are frequent misconceptions about how medications are used.

                  I was providing you with insights into how the system works in the way investigational medications are used, and how medications might be used "off label".

                  Both these processes are done using strictly enforced ethical procedures for the protection and safety of patients.
                  TouretteLinks Forum


                  • #10
                    Re: Hello, from Maine.

                    Hi TS guy,
                    I thought your long post was really thought-provoking. I hope you don't delete it. I don't have TS but my son does. Looking back at my university days, I think it would be hard to fit in, having TS. Most people of that age group are still pretty superficial (just a small step up from high school!). 24 is way too young to be thinking that there is no future. You are wise beyond your years but remember that the people around you are still riding the wave of popularity and partying - not seeking out true bonds of friendship, necessarily. I think you said you are in engineering. No doubt in the future you will meet lots of quirky people - my husband (with TS) is an engineer and in his circle are Asperger's types, and other people who obviously have some condition that makes them different. In the science world, that's all normal I think. Anyway, I am just trying to get the idea across that over the next few years, the people around you will start to grow up. I really think that your dream of the future is a realistic one. Maybe in the meantime you could join some groups that you formerly wouldn't have considered but tend to be a little more accepting (church groups, choirs, drama groups, I don't know) Kristin


                    • #11
                      Re: Hello, from Maine.


                      Thankyou for your post, specially the second one were you explain how it made you feel when you were taking the pills....My son is 12 years old and hes not comfortable about taking the pills either. Actually when I think about it he has mention the pills and why hes not ok without them...I think he thinks that way too...thanks...WOW