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  • Greatest Impact

    What are some of the things that have made the greatest impact on your life with Tourette Syndrome? Please tell us why.

    Has family support been something that would made your life easier?

    Has friendships been the thing that has made you happy?

    Or has it been your own determination to life a happy life? Steph

  • #2
    Greatest Impact

    hi stephanie!

    family support was and is very important for me! also very important is the love and support of my girl-friend! acceptance from one you love, gives a lot of power.

    the third thing for me is to say: okay, i live with tourette's and with this severe symptoms. i try to live my life as good as i can! nobody else is able to do it for me.

    hermann

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    • #3
      Greatest Impact

      Hi Hermann,

      It is really good to hear that you have the support of your family in your life.

      You are right, love and acceptance gives people the self confidence to live a successful life.

      Tell us about your severe symptoms. Is your OCD and Hyperactivity also severe?

      Steph

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      • #4
        Greatest Impact

        hi stephanie,

        at the moment i live with some loud vocal tics. i am 49 years old, since 4 years i have to endure coprolalia, which is the worst symptom i ever had. it's destroying my social life!

        ocd: if i want to leave my flat i have to control, if my computer or the heating is off ... and some other things. but it doesn't bother me too much.

        now it is lunchtime in my country, i have to cook. if u r interested, i write more later on.

        bye
        hermann

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        • #5
          Greatest Impact

          Hi Hermann

          Do you always do the cooking? I enjoy cooking. I was wondering if you are you working now? I was recently considering doing some research on how many people are impacted on an employment level due to their TS. From participating in this forum I have met people who work and have never disclosed and others who can not work due to not being able to hold a job due to their symptoms. I was wondering what your experience has been or perhaps members of your local TSA.
          Janet

          TSFC Homepage

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          • #6
            Greatest Impact

            Hi Hermann,

            I am sorry that it took 18 years to get a diagnosis.

            Do you feel that the doctors in Germany know alot about TS? Did you find a doctor with a professional interest in TS?

            There is a section on the forum talking about coprolalia called vocal tics. Hopefully you will find something there that will help with your life.

            Keep us posted.

            Comment


            • #7
              Greatest Impact

              Do you feel that the doctors in Germany know a lot about TS? Did you find a doctor with a professional interest in TS?
              @ Stefanie: It is very different, some are very interested and know about, others don't know anything and feel, that the treatment of Tourette's take too much time and is too expensive. My doctor (neurologist) is very interested and like a friend since many years.

              In the last 3 years we had several reports about Tourette's on German TV. I also had the chance to be two times on TV and to speak about my personal situation. Maybe this reports helped a bit to transfer information to the people.

              @ Janet: Yes, I am cooking four or five times a week. My parents know about my special diet, they invite me sometimes for lunch. This is quite good and I like it very much.

              cheers
              hermann

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              • #8
                Greatest Impact

                Hermann:

                Belated welcome the the TSFC forum.

                I am very glad you found us and can express your feelings and experiences here. It is good for others to relate and always good to share.

                My son has concerns in crowds or out in public places. He often tries to whisper the words but sometimes can not and yells them as others pass by.

                It is very hard for him at school sometimes too but the staff understand and let him leave to get some relief.

                Do you find something triggers the tics? His trigger is anxiety but then he is not comfortable in crowds.
                We have not worked with him yet on re-direction but then he does replace some words for others now.

                Take care
                PJK

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                • #9
                  Greatest Impact

                  hi pjk,

                  thanks 4 yr answer!

                  Anxiety and stress are increasing my tics for sure! Crowds for example in discotheques don' t bother me, but crowds in a classical concert hall, where I should be quiet.

                  Coffee, Coke, black and green tea is bad and worsens all my syptoms.

                  xiao Hermann

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                  • #10
                    Greatest Impact

                    Hermann:

                    I understand what you are saying.

                    We do not provide any dark soda's for my son and we found it makes his tics much worse and anxiety over the tics every higher.

                    My son enjoys reading and likes our local book store but we usually enter from the street and not from the mall entrance. This gives him an option for his exit and even though it is large and full of people it does not seem to bother him since the shelves are taller then we are.
                    PJK

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