Me and Dystonia
I just noticed that there are quite a few blogs devoted to Dystonia which I think is awesome. The reason why I didn’t do it with my blog is because for me as a person, my situation is overly complicated. Treatment has been a difficult thing and chose to do more poetry to keep my mind off the Dystonia. However, I could have two blogs and just devote the other one to just my dystonia. I just thought about that. hmmmmmm? Might be a good idea but it would take me a minut to set everything up and get followers and so on. It would be a challenge but it wouldn’t be too hard.
Today, I’ve decided that I will post more about how I am doing and where I am currently with this illness. But I want my blog to be random and I post things that way on purpose. Part of me coping with my current condition. I am also about ready to change this theme. As a friend said, it doesn’t seem to fit me. I agree.
So from now on, I post about my battles with dystonia and may add a few more videos if I can. I have been having a terrible time walking as I mentioned and I have also begin to start shaking when I get too stressed. My left leg has began to twist even more but it doesn’t hurt. Just makes it harder to walk and throws my balance off. I have decided to keep taking the Klonopin. I have developed a system over the past few days. It seems to be working pretty well. I am rotating between Klonopin, Zanaflex and Sinemet. This has straightened my legs out quite a bit. As for the pain, it is still there but I know it will probably remain.
I am being tested for ALS on May 17. Although the doc doesn’t believe I have it, he does want to rule it out. We have ruled out almost everything else. I have found a Dystonia specialist in my area and am trying to get an appointment with him. He specializes in Dopamine Responsive Dystonia so I hope he can be of some help to me. I have found a new Neurologist but she is booked until June. She is a great doc and my daughter just adores her. She is well worth the wait.
Well that is all the new information I have for now. Still learning to deal with this shaking and getting some info on a few other things. Whatever info I get, I post it here. The poetry will continue though as it is my outlet and keeps my spirits up.