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Thread: My Story About Living With TS

  1. #1
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    Default My Story About Living With TS

    The attachment that is part of this thread is something that I put together. Except for a small update I made to it recently I've had this with me for a while now and I think the Tourette Discussion Forum is a great place to put it on. It basically describes how TS has affected my life.

    My sole purpose for putting this attachment on the Tourette Discussion Forum is that I hope in some way it helps someone with TS or a parent of a child that has TS.

    And it's not too long too read through. :friendly_wink:
    Attached Files Attached Files
    Last edited by Steve; September 19, 2011 at 09:11 AM. Reason: convert attachment to pdf

  2. #2
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    Thumbs up Re: My Story About Living With TS

    Thank you for sharing your very touching and inspiring story about your experience.

    You may be interested in This Forum Post that discusses the possible relationship of Tourette and stutter.

    Your story demonstrates the importance of a strong family support system, in your case that of your wife, in providing you with the strength to find ways to deal with your Tourette.

    Your story should be helpful to anyone looking for insights into the life of a person who happens to have Tourette Syndrome.

  3. #3
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    Default Re: My Story About Living With TS

    You're welcome Steve. That's the exact reason why I put it up on the forum...to provide insights about TS. I wish I had read something like that in my early 20s, it would have been very beneficial to me back then when I was constantly wondering why I was the way I was.

  4. #4
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    Default Re: My Story About Living With TS

    Would you elaborate on the circumstances that precuded any kind of insight into your tic expressions, let alone a diagnosis during your early years?

    How did your parents respond to your tics? What about your pediatrician?

  5. #5
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    Default Re: My Story About Living With TS

    You see Steve, the greatest stumbling block to me being diagnosed early, is that all my relatives looked at my tic expressions as something that I would eventually outgrow and when I was in my 20's and the tics were still present (and in spades at times!) they just reasoned that it was just a shortcoming that I had for which nothing further could have been done.

    The person in my family who was the most open-minded and would have helped me, I'm sure, was my Dad; but he was dealing with his own demons, in that he was battling a serious mental illness. In fact, when I was a child my Mom panicked when she first saw my tics, in that she thought it was my Dad's illness also manifesting itself in me; so she took me to see many doctors for that reason. The doctors all told her that in no way did my tics mean that I was also getting the same mental illness that my Dad had, however none of them knew anything about Tourette's because they all also told my Mom that I would definitely outgrow the tics prior to becoming a teenager.

    The relative I did approach for help, who I looked up to and I thought was open-minded because he was educated, really "through me a viscous curve-ball" when he flat-out blamed me for my tics and in a few words basically said to me that I was not a "man" in his eyes. After hearing that I kind of believed, wrongfully so, that he was right. But you know what, luckily for me that my wife urged me to go see a doctor for my tics many years ago because even up to that point I always thought that I was weak in some way and I was to blame for them.

  6. #6
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    Default Re: My Story About Living With TS

    Your story has many of the hallmarks of why people with Tourette fail to be properly diagnosed:

    • Uninformed family members who wrongly interpret Tourette bahaviours as indicating weakness in character, often causing self esteem issues in the person with Tourette
    • Inadequately trained physicians in detecting possible signs and symptoms of Tourette.
    • Lack of widespread awareness to alert persons with Tourette about their disorder.


    Your journey to discovery, understanding and acceptance, in many ways, parallels my own, so I appreciate what you have gone through.

    Looking forward, how do you see yourself with your Tourette, now that you know and understand what's going on?

  7. #7
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    Default Re: My Story About Living With TS

    I am in a much better place now, that's for sure. Just knowing the cause of my behaviors has been a big mental boost going forward. However, I've often think to myself how much better off, both professionally and socially, I could have been had I not had Tourette's. But then I think back to one of my favorite sayings which goes like this: "If you haven't gotten all the things you want, be grateful for things you don't have that you don't want!"

  8. #8
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    Default Re: My Story About Living With TS

    Well,

    I've been on no meds since early July of this year and was doing pretty well, but I'm disappointed to say that the tics have come back and a little more than I wanted them too. So after speaking to my neurologist I am now taking Clonidine. The nice thing about this med is that it's been 2 weeks now and I have none of the bad side-effects associated with the neuro-leptic drugs or Nitoman that I took in the past. However, the literature says that it takes about 6 weeks for Clonidine to start being effective and 6 months to get full benefits. So I will keep my fingers crossed and wait.

    I really thought I would have been fine without taking meds from now on but it's not to be. This TS thing is a constant struggle, sometimes when you least expect it you get hit hard. But as Vince Lombardi said: "It's not whether you get knocked down, it's whether you get up".

  9. #9
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    Default Re: My Story About Living With TS

    Thank you for sharing your update and your positive attitude, which I feel is a large part of dealing with difficult situations.

  10. #10
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    Default Update on My Story About Living with TS

    Back in September 2011, I uploaded an essay describing my life living with TS. Attached is an updated essay.

    I really hope it helps anyone that is dealing with TS.
    Attached Files Attached Files

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