It's been so great seeing so many stories of Dystonia patients in the news lately. First there was the lady on Oprah, then she was on the Today show and now I understand Dateline did a story on a boy who has it. This is AWESOME. We definitely need to get the word out there.
I wish they would do more on Focal dystonias. A lot of people don't realize I have it. They think of the cervical dystonias or the generalized dystonias, but forget about those of us with focal. It's just as hard for us. With my left leg being an issue, I feel like I am drunk half the time. I think people see me and assume I've had too much to drink. Ask my wife, I hardly ever drink.
I have been getting so frustrated again. I'm having to learn things all over again. Now that it has spread to the left hand as well, I got the botox this go around there too. It definitely took away the pain and makes typing easier, I now have the weakness to deal with. Before, I just switched to the left hand for everything. Now, simple things, like opening a can of Pepsi is a new challenge. I am amazed at those things.
And now, the new challenge. My 2 year old daughter is noticing that I can't keep my hands open. Whenever she tries to hand me things, my fingers just curl inward. She doesn't understand it. Try explaining that to a 2 year old. It breaks my heart because sometimes she is frustrated by it.
Well, time to hit the hay as 7am rolls around quickly. Hopefully sleep comes quickly too.
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