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Tourette Canada Online Forum is a free, safe, moderated online community where registered users can exchange ideas, information and support about issues related to Tourette Syndrome. Tourette Canada has recently changed the server and refreshed the pages so returning members will notice a brighter look. Tourette Canada welcomes back two former moderators, Janet Rumsey and Cathy Wylie, to the Forum. Their knowledge and insight will serve the Tourette Forum participants with dedication and expertise.

We would like to thank the administrators and moderators who have dedicated countless hours to build and maintain the Forum. We look forward to continuing to provide a place for individuals and families affected by Tourette Syndrome and its associated disorders to get information, exchange information with others, and connect with the affiliates and support available across Canada.
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Keep Pressing if you are looking for support...its there!

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  • Keep Pressing if you are looking for support...its there!

    I just wanted to encourage anyone in the Edmonton area to become involved in the TSF support group here.
    My daughter was diagnosed in March at the age of 17. We have been hungrily seeking families with similar experiences to ours. The next week following her diagnosis there was a meeting for parents. I went and was quite disheartened by the lack of similarness the families shared to our story. All were of young grade school kids who are struggling with school issues. Tics seemed much different from my daughters.
    It was suggested at that meeting that we attend the Trek at the end of the month. My daughter is very much an activist and raising money for awareness and research gave purpose to her diagnosis so off we went. Again...the children there seemed to be unaffected by their TS. My daughter was having all sorts of tics and experiencing some very colorful corprolalia. There were no teens offering their hand in friendship or families welcoming us. (Because yes...I felt we were that worthy of attention)
    There was a pizza and pool party last month for families. We decided to give it another shot. Again, she was having a tough night with tics and corpralalia and we were both feeling quite uneasy. As we were leaving we looked at the resource table...suddenly someone asked about us...we shared...then they found someone with similar situations...another 18 year old who had learned through CBiT how to control his tics which were even greater than what we were experiencing.
    We have long bemoaned the fact that because of my daughter's age we are not able to receive several of the services and therapies offered to young children with TS. We learned of ways to access similar types of help and resources.
    My daughter is hoping to go to the COE TS Camp here in Alberta this summer.
    I've shared all of this to say...if we had written off TS with our first visit with the TS support group we would continue to feel lost and alone. Keep digging. Keep telling your story. I'm learning if no one in TS land has walked your road, there is someone willing to help you on your journey.
    I hope this helps someone...I hope I can help someone.
    Blessings,
    Caralee

  • #2
    Re: Keep Pressing if you are looking for support...its there!

    I went and was quite disheartened by the lack of similarness the families shared to our story. All were of young grade school kids who are struggling with school issues. Tics seemed much different from my daughters.
    Two points. The first is that TS will be shaped differently according to each persons circumstances. While you may not see similarities on the surface, the underlying internal systems that produce TS are the same so what creates one persons specific manifestation of TS will be driven by similar internal emotional impulses (though "emotional" is really too broad a way to include systems that unconsciously direct movement and attention. It's broader than what we usually think of as emotion and gets into reward systems that create habits and such.)
    the second point is that TS manifests differently in men and women. We don't know how much of that is biology and how much of that is society, but in women you tend to see more OCD symptoms and less tics (especially complex tics). But you do see OCD in boys and tics in girls.
    So fixing this might be a matter of learning to spot specific things that other people are dealing with that are in a similar category to what your daughter is dealing with, but with different specific manifestation.

    There were no teens offering their hand in friendship or families welcoming us. (Because yes...I felt we were that worthy of attention)
    Yep. We should always give a new group some time. It just might be that they have a little trouble warming up to new members. Or there might be some crappy people there. People in TS help groups are as human as everyone else in most respects.

    It's good to see that things worked out.

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    • #3
      Re: Keep Pressing if you are looking for support...its there!

      You make some valid points, Flutterguy! We need to pick our battles when dealing with Tourette, and choose the symptoms that cause the greatest distress or inconvenience.

      No one treatment tends to address all issues, and comorbids are usually more easily treatable than tics.
      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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      • #4
        Re: Keep Pressing if you are looking for support...its there!

        Support groups are funny things - beasts in and of themselves. I've been involved with a few that really offended me*, personally and professionally, but mostly it's been groups of open and friendly people (if not socially expert) who are trying hard to improve themselves. That's a complicated thing to do, and it's not like support groups come with a manual. (Note to self: write that manual?)

        For me, with the groups that I've led or co-led, it's always been explicit that we are open, inviting, welcoming, inclusive, and friendly. I've actually ejected disruptive members a couple of times (sad business...) because they were blocking others from being involved or getting support.

        * Okay, at one group - not one of mine - where the focus was ADHD, I made a statement out loud that having ADHD "sucked", which was appropriate in the context, and I stand by the sentiment anyway. Two members of the group basically argued with me, almost yelling at me, that they were happy to have ADHD, etc, etc. Goodness. It was awkward, as there were at least a dozen other people in the room who were quiet for several minutes as I tried to fend off these two <censored>. Happy ending: one young lady finally stuck up for me, agreed with me, and then suddenly most of the room was on my side. My question to my attackers: If you like having ADHD so much, why do you attend a peer support group? Ugh.
        Darin M. Bush, The Tourette Tiger, author of "Tiger Trails"
        http://www.facebook.com/tourettetiger

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