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Thread: Hey there!

  1. #1

    Default Hey there!

    Hi everybody,

    I just stumbled upon this board today, and decided to join. Especially because joining here might finally give me a chance to meet somebody else with Tourettes in person.

    I will be 52 years old in a couple of days, and have only known about the existence of Tourette Syndrome and Asperger Syndrome for a year and a half.

    In November of 2003 I happened to read the life's story of Dr. Duncan McKinlay in Reader's Digest. And the farther I read, the more I could find myself in that story! I went immediately and started doing research on TS, and knew without a doubt that I had it.

    I had been hiding my 'bad habits' all my life. I remember very clearly my mother admonishing me constantly (from about the age of 7), to "stop that awful eye blinking, what a terrible nervous habit!" Well, I had many 'nervous habits' over the years, and I couldn't stop. I was beating myself up over them, agreeing with people that I had no 'willpower', because otherwise I should be able to stop. Even one of my kids used to mock me, imitating my tics. My son would yell at me for repeating things he said. And my husband would get mad at me for repeating things I said several times.

    Anyway, three months after finding out about Tourettes and doing all that research, I decided to go one step further. For years I had thought I had autistic tendencies, but dismissed that thought, because I had never heard of high functioning autism/Aspergers before, and thought all people with autism were mentally handicapped. But I read that autism and TS can go together.

    So, I finally put 'autism' and 'Tourette Syndrome' together into the Google search engine, and up came Asperger Syndrome! And it fit me completely. Finally the puzzle of my strange life had been solved. So, at the age of 51, I was finally officially diagnosed with TS at the Tourette Clinic in Toronto, and a month later I was diagnosed with AS by a social worker specializing in AS in adults.

    I also have ADD and OCD, but not enough to be diagnosed with those separately (according to the doctor at the Tourette Clinic), as well as dyscalculia and many sensory integration issues. Plus, I have fibromyalgia. I am not on any meds for anything but the fibromyalgia. I figured that I've lived for 51 years with the tics without medication, I don't need any now!

    So, there you have it, in a nutshell.

    I have been married for 26 years to a Canadian (which is not great, because my autistic tendencies are getting worse with age, and I'd rather be alone). We have five children, four daughters aged 25, 23, 19 and 13, and one son, 22. The three oldest are married, and the oldest has four children.

    None of my kids have either TS or AS, even though one has a couple of tics, and two of them have some AS traits.
    German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,820

    Default Hey there!

    Wilkommen Uschi!

    Glad you found the TSFC Forum and that you shared your all to familiar story with us. Your experience with discovering that TS has a name and that you were not the only one in the world doing these things echos my own experience.

    I am now in retirement and my diagnosis was confirmed about fifteen years ago.

    Have you discussed TS and the other disorders with your children and grandchildren?

    If you have not, you might consider getting a copy of the Questions and Answers brochure from TSFC to acquaint the young ones about the disorder.

    Even though they may not show signs, it's worthwhile giving them a heads up in case any of the grandchildren begin having difficulty in school with attention or with disruptive behaviour.

    Even the grandchildren should be told, in terms they can absorb at their age, so they can be on the lookout when they have their own families.

    As you well know, this is a genetic (hereditary) disorder, which, hopefully, by the time our grandkids are having their kids, the researchers will have identified the gene.

    Tell us about the TS resources in Toronto, as the information will be useful for other Forum members.

    Hope you continue to participate in the Forum, as your research will certainly be helpful in informing others, new to TS.

    Tchuess!

  3. #3

    Default Hey there!

    Thanks for the warm welcome, Steve.

    I was diagnosed with TS by Dr. Pearce at the Tourette Clinic, which is located within Western General Hospital in Toronto. She is a psychiatrist specializing in TS.

    They will diagnose Asperger Syndrome up to the age of 18, I guess after that you better stop being autistic :roll: .

    That seems to be a common thing, that for both TS and AS the resources for adults are scarce or non-existent, as if the children who have those will never grow up!

    I still have six brothers and one sister in Germany. Three of my brothers and my sister appear to have AS as well (and my father obviously had it, and I believe my mother had TS). My sister and my oldest brother also have quite a few tics. But none of them admit that they have any problems and deny having either TS or AS.

    I have been trying to educate my husband and children about TS and AS. But none are interested in learning anything about either.

    My son just shrugs and says, "You have Tourette Syndrome? Cool, no problem. And AS as well? Doesn't bother me, you're still the same person". And that's that. I explained to him that repeating things he says is a tic, and I can't stop myself from doing that. He just said, "Oh, I see, now I know" and now ignores my echolalia.

    My husband doesn't want to know or believe that TS isn't just tics. The tics don't bother him, but he claims I should be able to control my angry outbursts (which he often provokes with his judgmental ways).

    Two of my girls still get mad at me for having tics in their presence, especially in the car or at church, telling me to 'stop it'. I find that in church I can either focus on suppressing tics, or listen to the sermon. I can't do both. So now I have decided not to care about what people think and listen to the sermon (all the while fidgeting like one of the small children).

    I am afraid I can see my one granddaughter showing signs of autism. But my daughter refuses to listen and gets mad at me if I voice my concerns to her. She won't believe that any of her kids could have inherited TS or AS. My grandchildren are a girl, who just turned 5, twins, a boy and a girl who will be 3 next month (and the little twin girl is the one I am concerned for) and a little boy who will be 1 in July.
    German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

  4. #4
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,820

    Default Hey there!

    It is not uncommon to experience some scepticism or even denial when trying to explain the presence of TS to family members.

    Sometimes it helps to leave some easy to read explanatory literature around, that a sceptical family member can read, perhaps in private.

    The Q&A brochure I referred to could be useful in that regard.

    Have you checked out the Greater Toronto Chapter of the TSFC, listed on this link?

  5. #5

    Default Hey there!

    I printed out the Questions and Answers. But I've left some interesting brochures from the Tourette Clinic lying around the family room for months, asking my husband to read them. He simply wasn't interested, and eventually I put them away in frustration. So, I'm not too hopeful he'll bother reading these.

    Both the nearest chapters (Pickering and Kitchener) are fairly far away (a drive to either one will take me at least an hour and a half each way). I wished there was something a little closer! I especially hate driving through Toronto, which would be inevitable if going to Pickering.
    German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

  6. #6
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,820

    Default Hey there!

    Give a call to the National Office of the TSFC to find out if there are any resources closer to your home.

    TSFC Contact Info

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