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Co-morbidities can be confusing

Tourette in schema ppt speech 1This weekend, I finally had some time to work on my speeches for Athens. Because of Easter, I have a four-day weekend (in the Netherlands, we celebrate Good Friday and the second day of Easter as well), so plenty of time to start writing things down.

For my first speech, which is about co-morbidities, I started with writing down all the symptoms I have. It turned out that that wasn’t as easy as I thought! A lot of symptoms are so normal to me, that I tend to forget that I have them. It took a lot of time and thinking before I finally had it all on paper.

When I was done, I put it all in a diagram, which I will use as a PowerPoint presentation. It’s based on the logo of the Dutch Tourette Syndrome Association. The logo has five open circles and you can fill them with the symptoms you have, accordingly to how strong the symptoms are. I’ve added a couple more circles and wrote down some smaller symptoms on the side to make it all fit.

The symptoms on the right are the things that bother me, the ones on the left are positive things, which I’ll explain more during my second speech.

To be clear: This is how MY Tourette is for ME, for every person the diagram would be different! So, yes, it’s Tourette in a diagram, but it’s not necessarily how it works for you, it’s probably a bit different.

During the speech I’ll add the words one by one to make it more understandable. After the picture you see here, four circles will get red (ADD, OCD, Autism and tics), because for those four I have a diagnosis.

I’ll end with something that’s been frustrating me lately: Why not just give the diagnosis Tourette Syndrome and a list of symptoms that can come with it? I don’t have mild versions of other disorders, I just have Tourette! I want to ask the people listening if they can change that. There’s been talk about this for a long time and now it’s time for action!

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LauraB

10 Comments

    • Thnx, I will!

      Haha, who knows? 😉 I do hope I can do this more often!! Maybe even in America??

      • cooool! if you do youll have to come to seattle. thats where i am now.

        • I’d love to! I’ve been to New York once, but just for 2,5 days (the International TS symposium of the TSA), and I really want to go back to the States and see way more! And I’d love it if I could combine it with a conference or camp or something like that 🙂

          • when was that laura? do they have more of these types of things? id love to go to one. i wouldnt know how to go about doing it though. how did you get chosen?

          • That was in June of 2009. I understand it’s every 5 years (so it should be 2014, which would be great for me!), it’s the scientific symposium of the TSA. I just went to attend it, I didn’t speak there (would LOVE that, though!). I acctualy decited to go on Thursday night and was there Friday morning! It did cost me quite a bit of money, but it was all worth it 🙂

          • cool thanks for the info laura! best of luck to you!

          • Laura, do you have an outline of exactly what you’ll be talking about it? Would love to see it!

          • In this speech I just lay down the facts of how Tourette is for me. I’ll explain all the different symptoms and give examples of my life.

            At the end I’ll talk about the different diagnoses and how that frustrates me and how I think it should be (just one diagnosis: Tourette, and a list of symptoms that can come with it, as 90% of the children with TS has different symptoms).

            I do have it written down more, but it’s just in key words and in Dutch.

            To me, my second speech is way more important, because that’s about my opinion, my voice.

            What I’m going to do it try to let someone tape at least the second speech, that one I really want on tape, so I can put it on youtube. I’m going to try to let someone tape the first speech as well, but I can’t promise because I want pictures too and my sister can’t do both at once. So I’m going to figure out how to do it, I’ll do my best!

            If it all works, I’ll put both speeches on youtube! I really, really hope so, just gotta find someone to take pics, so my sister can tape it all 😉

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