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Tourette and Marriage

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  • Tourette and Marriage

    HELLO ALL I WOULD LIKE TO INTRODUCE MYSELF MY NAME IS BRANDIE AND I LIVE IN GEORGIA AND I HAVE RECENTLY MARRIED MY HUSBAND BACK IN MARCH HOWEVER WE HAVE BEEN TOGETHER 5 YEARS. WHEN WE FIRST STARTED DATING HE WAS OK BUT ABOUT 3 MO. INTO THE RELATIONSHIP HE WAS TOLD HE HAD TOURETTE SYNDROME AND I DIDNT KNOW WHAT IS WAS BUT BY THAT TIME I WAS ALREADY IN LOVE WITH HIM AND COULDNT JUST LEAVE SO I WAS GOING TO HELP HIM THREW THIS . HE WAS I THINK ABOUT 22 AT THE TIME AND NOW IS 28 SOON BE 29 WELL HE CANT DRIVE LONG DISTANCES BECAUSE HE HAS THE PROBLEM WITH HIS EYES HE BLINKS THEM REALLY FAST AT TIMES AND HE BLOWS WITH IS MOUTH SOMETIMES UNCONTROLABLY HE CAN HOLD IT BACK SOMETIMES BUT WHEN HE DOES IT WILL BE WORSE LATER. HE JERKS HIS HAND AND ARMS AND SHOLDERS ALL THE TIME. WE HAVE BEEN TO 6 DR. AND FINALLY THE MAYO CLINIC IN FLORIDA AND THEY GAVE HIM THIS MEDICINE CALLED TETRABENAZINE AND WE ARE WAITING TO SEE IF IT HELPS THE PROBLEM IS IS THAT IT IS SO EXPENSIVE FOR US TO GET IT BEING IT IS ILLIGAL IN THE STATES. FOR 112 PILLS WE PAY 250.00 WE CANT HAVE KIDS BECAUSE TS IS HEREDITARY BUT FORTUNEATLY I HAVE 2 KIDS FROM A PREVIOUS MARRIAGE BU TI WOULD STILL LOVE TO HAVE A CHILD WITH HIM HE WOULD MAKE A GOOD FATHER BUT HE REFUSES TO PASS THIS TO A CHILD. IF ANYONE HAS ANY ADVISE PLEASE LET ME KNOW. :D

  • #2
    Tourette and Marriage

    Welcome Brandie and thank you for sharing your story.

    I can sense your concern in your message, and with the help of our Forum members I think we can help you find your way in dealing with your husband's TS.

    Congratulations on your recent marriage. Your husband is a lucky man to have a partner who cares enough to learn about his disorder.

    The best way to deal with TS is to take things one step at a time. We will be pleased to work with you, by pointing you to various resources so you can become fully informed about TS, some treatment options, local resources and how to deal with TS in your life together.

    We can discuss the issues you have raised, which we can cover one by one. As you may have questions or comments, please use the "REPLY" button on this discussion and we will respond to your questions.

    TS is a medical disorder like any other medical disorder, so think of it in the same way as if your husband told you he has diabetes. While it's true that some people may not be familiar with TS, with your help they can become more aware of what it is.

    CLICK HERE to read about the Myths and Facts about TS. You will find other useful articles on TS on the TSFC website as well. When you're done, come back her to the Bulletin Board.

    Don't be discouraged because you had to see 6 doctors before you found someone to help at Mayo in Jacksonville. Many doctors don't have the necessary training to adequately treat TS, so sometimes it takes time before you see someone who can help.

    Is the doctor you saw at Mayo a specialist and if so, out of curiosity, what is that doctor's specialty?

    At his point it may be premature to decide not to have children together. The fact that one parent has TS is no guarantee that your baby will have TS as well. Many people with TS have children who do not exhibit signs of the disorder.

    However, this an issue that should be discussed together with your husband's physician and perhaps see about getting some genetic counseling. The Mayo could probably help you in that regard.

    Have you discussed the issue of difficulty getting the medication with your doctor? Sometimes doctors can help getting medications less expensive. You are quite right in that Tetrabenazine (Nitoman?), is not currently available in the US. Did the doctor give you samples or is it from an investigational drug supply at the hospital?

    Also Check Here For Info

    There may be some local resources available in Georgia. Check here:

    Georgia Chapter (Atlanta) - Serving Georgia and South Carolina 770-901-9998 (or, within GA/SC but outside 404 or 770 area codes: 1-888-799-2101)
    e-mail tsageorgia@bellsouth.net
    website: http://www.tsaofga-sc.org/

    Please let us know more information about what the doctor told you and let us help guide you through the maze of information on Tourette Syndrome. Many of us live with TS every day, and have figured out ways to deal with it successfully.

    In cyber communication, using upper case (CAPITAL LETTERS) is interpreted as shouting, believe it or not..and is surprisingly more difficult to read. It's no big deal....just a suggestion { }

    We'll be looking forward to hearing from you!
    Steve

    Dum spiro spero....While I breathe, I hope

    Tourette Canada Homepage
    If you enjoy the TC Forum, please consider a Tourette Canada membership
    Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

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    • #3
      Tourette and Marriage

      Hi Brandie, and welcome to our discussion board.

      You know, I have had TS from childhood (finally diagnosed last year, at the age of 51). I've been married for 26 years, and have five children (four daughters and one son), and not a single one of my kids has inherited the Tourette Syndrome! That shows you that even though TS is hereditary, you don't necessarily pass it on to any of your kids (even though it is possible it will show up in a grandchild). So, personally, I find it sad that your husband doesn't want children. Besides, even if he does pass it on, TS is not terminal and you can usually live with it without too many problems.

      Your husband might want to try behaviour modification, to learn to redirect tics to doing something else when they interfere with what he is doing. I haven't succeded with this with eye blinking (even though I can stop from blinking so fast that I can't drive), but I can substitute a tic that interferes with driving, for instance, with another one at least for several hours.
      German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

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      • #4
        Tourette and Marriage

        I have been able to do that too. I can sometimes "transfer" a tic for a short period of time if the original tic prevents or hampers my ability to preform a project. It takes some practice and control but it helps alot with high concentrated things such as driving or test taking (im still in school)
        The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

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        • #5
          Tourette and Marriage

          Nice to see you again Uschi and Adam!!

          Redirecting tics was the one single way I was able to work in the field in which I made by career. I succeeded in keeping my TS pretty well out of public knowledge, though this strategy does increase one's overall stress level.

          Fortunately I worked from my car, so between clients I could express the pent up tics in the privacy of my car...with the windows rolled up tight.{smile}.

          How did you first learn about re direction, or did you discover the technique on your own as a "survival strategy"?
          Steve

          Dum spiro spero....While I breathe, I hope

          Tourette Canada Homepage
          If you enjoy the TC Forum, please consider a Tourette Canada membership
          Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

          Comment


          • #6
            Tourette and Marriage

            I learned it on my own as a survival strategy. I didn't know I have TS until November 2003, and did my best to hide my tics before that. So, in order not to be obvious (as in thinking I might be thought of as crazy if people saw my 'strange habits'), I substituted less obvious things for obvious tics all my life.

            And yes, it's very stressful, especially if you do it not only in public, but at home as well. I've stopped hiding my tics at home most of the time now, my family better get used to them.
            German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

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            • #7
              Tourette and Marriage

              I too learned it on my own. It was almost just from me getting soooo frustrated with a tic I thought to myself 'I wish I could just switch this tic somewhere else'. Well, I was sorta joking about it but I noticed that if I concentrated enough I COULD actually do it! I usually use it during driving. I used to have a tic with my leg but I can redirect it to my wrist and hand (I drive with one hand anyways).
              The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

              Comment


              • #8
                Tourette and Marriage

                This is a very interesting topic. I was wondering what your experience has been with the "satisfaction" factor is when you are redirecting these tics? My tics have been simple but my son has a really complex tic that thows his head to the side and recently he started adding a full head roll in there occassionally. I was wondering how I could teach him to re-direct.
                Janet

                TSFC Homepage

                Comment


                • #9
                  Tourette and Marriage

                  Janet,

                  Wow, thats a tough one. This is my opinion on how to do this but if anyone has a better way it might be better to try that one. Pretty much he needs to learn how to create a tic. By that I mean, he needs to learn how to think of a tic and teach himself how to incorperate this into his series of tics. (I know, that sounds horrible to want to add more tics but this is sorta hard to explain cause I almost did this subconciously). Once he has that ability, he than would work on "preforming" that tic during a certain time instead of the tic that hampers his performence. If he has a tic already that doesnt hamper this activity, than there is no need to add a tic. I notice that a lot of my tics happen during a certain time, which I think most people here can agree, or partly. I only do this leg tic when Im driving, or my breathing tic only seems to flare during hard activity or excersize, etc. Thats a big step to undertsanding this trick. But this trick has helped me with certain situations where my TS would seriously hamper my abbilities to preform a certain activity. But again this is my opinion and this is the best way I could explain how to do it. It really is hard how to describe to someone how to do this, so I apologize if it seemed confusing or not worth the reward.
                  The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

                  Comment


                  • #10
                    Tourette and Marriage

                    Taking into consideration, many older people with TS who were not even aware of their diagnosis, let alone know such a disorder exists, learned to re direct tics as a "survival strategy".

                    I wonder if the process can be taught, or learned for that matter. It would be an interesting experiment to conduct with a willing young person and a patient, tolerant parent.

                    There is no down side to the experiment and a possible benefit for the young person.

                    As for the satisfaction factor...I can't say the re direction fully satisfies the actual need, but offers an acceptable substitute for the moment. This temporary satisfaction seems to be enough to detour around the immediate need for the real tic, and reduces the visibility of one's need to tic.

                    What has been your experience with this strategy?
                    Steve

                    Dum spiro spero....While I breathe, I hope

                    Tourette Canada Homepage
                    If you enjoy the TC Forum, please consider a Tourette Canada membership
                    Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

                    Comment


                    • #11
                      Tourette and Marriage

                      Pretty much he needs to learn how to create a tic. By that I mean, he needs to learn how to think of a tic and teach himself how to incorperate this into his series of tics. .. Once he has that ability, he than would work on "preforming" that tic during a certain time instead of the tic that hampers his performence.
                      Believe it or not Adam that makes sense. My experience with tic has been that I haven't had the need to redirect because they have been very simple/mild tics...the OCD and ADHD are what totally interfer with my functioning (I can relate to the "walking on cracks" ) My second oldest (7yrs) has a picking tic, he picks his skin an creates sores so I would help satisfy his need to pick by giving him stickers so he could pick them instead, another child I know chews his clothes so his mom has tried to get him to chew gum instead...didn't always work. Duncan McKinlay, whose TS is more severe shared that when he realized he was yelling the "F" word he disected this to discover that his satisfaction need was the expulsion of air that came with the "f sound" so he could adapt this word to the sound "fah" and it worked.

                      As Steve asked, I wonder if it can be taught with someone like my 13 year old and that was where my mindset was when I asked. Perhaps if we get more input from others and how the learned to redirect, I could try to work on this with him. He is very comfortable with his tics and this head tic he has is very complex but it doesn't interfer with his performance but he certainly has a lot of neck pain with it.

                      I'ld love to get more input on this topic.
                      Janet

                      TSFC Homepage

                      Comment


                      • #12
                        Tourette and Marriage

                        Janet,

                        I know exactly what duncan has discoved. I used to have a vocal tic of a grunt like sound but its embarrising to do that in public so I tried to hide it and discoverd that if I sliently cough or make a slight rumble in my throat it gave me the same satisfaction and was less noticable to everyone around me. It seems some tics are performed only for one little part of the tic, we just do the entire tic because our body thinks thats the best and easiest way to satisfy that urge. But about my explaining redirecting tics. Again, I apologize if it sounded wierd or crazy. I guess I really didnt sit down and say, Im going to learn how to do this, I just sorta did it (like steve said) for "survival". But I am definately going to be more aware of this when I drive because that is my biggest time when I use this trick. I will try to see how my mind tells my body what to tic and what not to.
                        The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

                        Comment


                        • #13
                          Tourette and Marriage

                          It seems some tics are performed only for one little part of the tic, we just do the entire tic because our body thinks thats the best and easiest way to satisfy that urge.
                          That's a very insightful interpretation, Adam! It never ocurred to me that a subconcious component of camouflaging a tic involves using the basic part of the tic that delivers the satisfaction, then converting it to something else that might be socially more acceptable.

                          It would be interesting to hear from someone who does not have TS, but lives with a person with TS to know...are they really being fooled???
                          Steve

                          Dum spiro spero....While I breathe, I hope

                          Tourette Canada Homepage
                          If you enjoy the TC Forum, please consider a Tourette Canada membership
                          Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

                          Comment


                          • #14
                            Tourette and Marriage

                            Originally posted by Steve
                            It would be interesting to hear from someone who does not have TS, but lives with a person with TS to know...are they really being fooled???
                            I do that kind of thing at work. I told a co-worker about my TS a couple of days ago... she said I hid it well. So, I suppose they can be.
                            Colin

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                            • #15
                              Tourette and Marriage

                              Well, nobody in my life has ever suggested that I have TS. The tics I never hid (throat clearing, coughing) people never think of as tics, and the obvious ones I suppressed. Whenever I tell people now, they are really surprised. They will tell me that I don't have any tics! Well, at least until the eye blinking got really bad again last year. That one comes and goes. Sometimes I blink my eyes for a couple of years, and then not at all for up to ten years. So, some people I know had never seen me blink before last year.
                              German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

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