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Thread: I've yet to meet someone else with Tourettes :(

  1. #1

    Default I've yet to meet someone else with Tourettes :(

    I'm from Ottawa
    where the Tourette National Conference is being held, starting tomorrow
    I was horrified to see that it would cost me $410 to attend

    I've become rather discouraged
    For the 1st time in my life, I've decided to reach out
    only to find no one on the receiving end

    1st off, the forums at Tourette.ca were down for God knows how long
    They kept promising that it would soon be up, and yet that day never seemed to come
    I recall a notice, claiming they'd be up in October
    4 month later, they had yet to be up
    This is one of the only resources and outlet for us
    Not sure why they were allowed to remain unactive for such a long time

    2nd, here in the Ottawa chapter, they have a meeting once a month.
    I was flored when I heard this.
    But when I attended, I soon came to realize that we basically had to sit through people
    ramble on about their accomplishments and credentials for about 2 hours
    only to have people scurry off afterwards
    I didn't even see a single person with Tourettes there
    This is NOT a social outlet, as was suggested by my chapter

    3rd, I've recently approached local community centers, seeking advice and support to start proper meetings,
    where actual Tourettes sufferers can meet and find support through sharing stories and experiences
    I was again let down, when they showed little to no interest in helping me out.

    I am very discouraged

    This conference, only 2 blocks from my apartment, they claim is for the support of individuals and families
    and yet someone like me, an actual Tourette sufferer, who works and barely makes enough money to buy toilet paper
    is kept out of possibly meeting others like me, and is locked out of his own life it seems.

    Consider this, I've never even met another person with Tourettes
    and I'm 34
    How sad is that?
    Many hide in shame, feeling as alone as I feel right now
    If only there was an opportunity for us to come together and know that we're not alone

    In a society where these resources are so needed
    This mismanaged them is nothing less than inhuman
    wether people can't be bothered with fixing the forums, further dipriving people from connecting
    or desguise a meeting as something other a place where they congratulate themselves on their contributions

    My girlfriend is deaf, and you wouldn'y believe the resources she has.
    People are constantly raising money for such a reason
    It seems like, in my city however, that nothing is really happening in spite of this

    I'm an emerging film maker
    and plan on making some domumentaries on the subject
    in which I've decided to mention these lack of resources
    and the carelessness and misleadership of those that are available

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: I've yet to meet someone else with Tourettes :(

    Hello Michael and welcome to the Forum. Thanks for your persistence and for joining us.

    Sorry to hear about the obstacles you have encountered in locating satisfactory support.

    You make some interesting observations about the shortage of real hands on support for people with Tourette, although efforts seem to be made at various levels, much of the grass roots support depends on volunteers, and volunteers are hard to come by.

    For the 1st time in my life, I've decided to reach out only to find no one on the receiving end
    This Forum is operational and is available to welcome you to provide the information and support you might need.

    Going forward, this might also be a good platform to propose some constructive ideas on how much needed support can be improved at local levels.

    While there are many dedicated and hard working people volunteering their time in the hopes of delivering support, perhaps some models for structuring support need to be modified, and creative new strategies might help get the message across.

    This Forum could be an opportunity for you to discuss your constructive, positive proposals.

    I'm an emerging film maker and plan on making some documentaries on the subject
    Your project should certainly heighten awareness for a disorder that is often misunderstood and sometimes neglected.

    Additionally, you might consider becoming an active member of the Tourette Syndrome Foundation of Canada where your direct input might have some impact on how Tourette support and information are provided in the future.

    In what ways is Tourette affecting your life at this time, if at all. Has your Tourette caused difficulty during your growing up years and has that changed? Have you ever been evaluated and offered treatment options by a qualified health professional in connection with your Tourette?

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