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Tourette Syndrome support groups: Good or bad?

I’ve often considered joining some kind of social group or support group for people and families with TS. I love meeting new people, and it would be interesting to meet other people living with the same challenges that I do.

However, it has been shown that tics tend to feed off of each other, and I remember reading about a family with multiple children with Tourette and the kids’ tics would be so much worse when they were all in a room together.

I have even noticed that my tics get worse when I am around another person with a tic, whether or not that person has TS. So I question whether it would be a good idea for me to walk into a room full of people with tics! Has anyone ever visited such a group or experienced a similar problem?

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  1. My son who is 19 leads a support group with me and I do not see an escalation in his or anyone who comes to our group. We make it a relaxing environment where we share and so anxiety stays low. Not sure what would happen if we had mutiple people with TS but they are all usually together at camp and I have not heard of a major escalation of tics.

  2. Alison, A Support Group is in place to give support and information to better help you in whatever you are struggling with. I have been the leader of a Tourettes Support Group for almost 4 yrs. after my son was misdiagnosed or just plain not diagnosed for over 5 yrs. I threw myself into educating and advocating right away! My support group is actually ran out of my home under TSA. They are casual, uplifting and more like friends bonding. It is primarily a group of Mom’s with children that have TS. It is open to all but adults usually have already gone through life with TS and they don’t feel the need to attend. I wish more adults would attend to give us Mom’s and the children more insight. Young females have a difficult time opening up about it, so it is mainly boys and their mom’s who attend. The boys socialize (happily bond with video games and chat) while we adults chat. I made it family friendly and I serve light refreshments.
    Also, please stop thinking about TS as a death sentence or like a disease when you are hesitant to “come out”. Educating those around you is important and hiding it like it is a disease or illness will only hurt you and others with TS. I take the opportunity to let “everyone” I come in contact with that my son has TS. It is empowering and will actually make those around you feel at ease if they are able to talk with you and ask questions they are reluctant to ask!

  3. thanks for the thoughts. I guess I really should give it a try and stop making excuses! Its still hard to be “out” about my TS!

  4. HI! According to my neurologist my tics are ‘severe’ (but they have gotten better as of a couple months ago) and I have been to the TSA groups. They’re a lot of fun and I think they’re a huge loving support :)
    Sure I might pick up a tics once in a while but they go away quickly since they aren’t my main tics.
    I think you should try it out. Maybe go once or twice to see if you like it :)

  5. We’ve only been to TS support groups at Rutgers, and at that time my son’s tics were not too bad, so it’s hard for me to say.

    However, recently my younger son’s orchestra performed at a school for children with cerebral palsy. When we walked in the door my older son, O, began ticcing — so I can understand your concern. Do you think it would depend on the severity of everyone else’s tics, or would the awareness of being in a room with a bunch of people who also have TS be enough to trigger tics?

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