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High Hopes

About a year ago I was preparing myself for a major surgery.  At the end of April, I went to UMASS in worcester to have my DBS.  I was more excited then scared.  Although I would be awake, it would be a long surgery and I would probably have a headache after, I was excited for the results.  The day my hand opened was one of the best days of my life (besides the birth of my baby girl!).  To get an infection and have the device removed was just devastating.  I couldnt believe it.  All my excitement was shot the day my hand curled back in.  I was so upset I didnt want to even speak to anyone.  All I wanted to do was cry.
I went back to Florida to be with Ryan until he graduated in August.  After the big move back to MA in September, I began to prepare myself for my second DBS surgery.  This time I was more scared than excited.  I was scared about the surgery because the first one hurt so bad when they put the screws in my head.  I was scared of infection and I was scared of it not working.  I was also scared because this time I was having both parts of the surgery at once and having both sides done.  I was upset because I was having it 3 days before Christmas and I didnt know if Id be home with Hailey.  On top of all the nervousness, I was a little excited because I knew it had worked the first time.  I WAS going to open my hand!
Well, it worked.  Its been 4 months since my second DBS and my hands work.  I wouldnt say they are normal, but they work.  My left hand is often curled in still and I have to tell myself to open it.  I get spasms in both hands but in time, I hope we can get the programming straight.
The thing that upsets me is that before I had DBS, when i thought about the surgery, I thought Id be a normal person after.  I didnt want any more spasms.  Today, I have been having a lot of problems.  My neck and my back keep pulling in towards each other.  I feel very "twitchy".  I was in a store earlier today and I literally forgot how to walk.  Its a very weird feeling and hard to describe but my feet just wouldnt move.  I had to tell myself to take a step and I dragged my feet a little.  I had very high expectations of DBS and it has helped me considerably but someday I just want to be completely normal and not have to worry about going shopping. 
All of these things cause me a lot of stress, which causes the dystonia to be worse.  Its a vicous cycle.  If there was a cure, we wouldnt have to worry about it.  To find a cure, we need to raise money for research and we need to get the word out there because not a lot of people know about dystonia.
I do believe there will be a cure and I will be able to get better but I need YOUR help!

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