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right hand acting up

     In June 2009, my dystonia was really bad.  That is when my wrist curled in and I lost complete use of my whole left hand.  I started wearing a wrist brace and little did I know I would wear it for 3 1/2 years straight.  Anyway, I applied for social security disability beacause it was impossible to work.  I had a job for two weeks in Florida around that time and was fired because I "didnt fit in" even though I know it was because of my dystonia. 
     I was denied social security twice and had to get a lawyer and go to court.  It took until now for that to all happen.  Last friday, I finally had my court date.  I met with the lawyer the night before and he went over what was going to happen.  He told me the questions he was going to ask and said to just "tell my story."  I was looking forward to it because I never could tell my story, it was just all on paper. 
     Friday morning, my mom and I went to worcester to the hearing.  I was so nervous, my neck was twitching the whole time and since then my neck and back have been killing me.  First of all, the lawyer was late so they told me I already had a strike against me.  When the lawyer finally got there,  he went in and talked to the judge alone.  He came out to talk to me and said the judge had already made a decision.  I was pretty upset because I didnt have a chance to talk.  He agreed to give me a check for the money I would have gotten from June 2009 until March 2012 but no monthly payments after that.  They said I had a finger to point with so I could work in the mall telling people where to go.  The lawyer agreed to accept and didnt fight for me at all.  It's all pretty annoying but I guess it is what it is, and I will have to get a job directing people.
     I don't think people know how hard it is to do things with dystonia.  You never know when its going to act up.  I get nervous just going into the grocery store because I never know when my feet are going to get stuck and I have to drag myself and Hailey out of the store while everyone stares.  Its painful, scary and annoying.
     Today, my right hand curled in to a fist.  This has never happened, not even before DBS.  I had lost use of two fingers on that hand but not all of them.  It was stuck for about an hour then relaxed.  A little while ago, it got stuck again and has not relaxed.  Its so devastating.  I guess I cant point now, can I! I emailed my neurologist but havent heard back yet.  Hopefully he can adjust my settings and it will get better. 
     Dont forget to register for the dystance4dystonia walk on May 19th!  Only 2 months away.  If you are pledging, you need to raise atleast $100 or you will have to pay the $25 registration fee for one adult or $60 for a family.  Tshirts will be given out the day of the event.  If you know of any companies willing to sponsor, please let me know or give them my email address.  Sponsors start at $100 and can go up as much as you'd like.  Also, looking for donations of water and healthy snacks if anyone knows anyone willing to donate!  Thank you for all your support.

Comments

  1. People with bipolar diorder have fingers to point with too... yet they get approved for SSDI ALL THE TIME. I feel your pain and do not know why it is so hard to get approved... :-(

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