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The last few weeks have been some of the hardest weeks I've ever experienced.  My dystonia is getting worse and the pain is something I can't even begin to explain in words.  Imagine having a Charlie horse, now multiply that pain by 10 and apply it to your arms, legs, back and neck.  Doing every day tasks like cooking, cleaning and doing my hair have become nearly impossible.  I am getting extremely discouraged and don't really know what my next steps are. 
I have called nearly every neurologist that's within driving distance but getting someone to listen and help me is extremely difficult.  Now, I am not writing this for sympathy or to complain about my pain but I am writing this is desperate need of someone to help.  If anyone knows of a great movement specialist neurologist, please let me know.
I have an appointment on July 6th with my neurologist and neurosurgeon but I am petrified.  They have tried multiple things with no success, and are now saying I need my DBS redone or I need another stimulator put in.  Either way, its very scary. 
A couple weeks ago, we had the distance for dystonia walk in Nashua and it was a huge success.  Thank you to everyone who attended, donated or helped plan it.  I met some new amazing families and we raised around $2700.  I couldn't have done it without my boyfriend, my parents, aunts, uncles, cousins and friends.  Thank you all so much and I am already looking forward to next year.

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