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Not the news I hoped for

On Wednesday I spent six hours driving in the rain. I spent one hour sitting in a waiting room and I spent 20 minutes with my doctor. In that twenty minutes I went through a roller coaster of emotions as I was told this might not work again. The impedance numbers on my DBS are off, once again, indicating a possible break in the wire. This is exactly what I just had fixed. I don’t know what’s going on or what to do. The pain in my back is so intense I can’t sleep. I wake up a million times a night then I’m so exhausted during the day I can barely keep my eyes open. My hands are closed so tight they throb and swell and doing simple every day tasks are nearly impossible. 
When I had my dbs, seven years ago, I had high hopes it would change my life. Shortly after that surgery, it did. My symptoms were under control for seven whole years. I don’t know what changed but recently it’s not working and it’s beyond frustrating. I’ve had the settings changed more times than I can count, sometimes it works and sometimes it doesn’t.
I honestly don’t know what my next steps are. I’m in the process of contacting my surgeon and getting back in touch with my neurologist to find out what to do. I may need the settings to be changed again, I may need the DBS redone, I may need a new stimulator. Only time will tell. 
I am still planning the dystance 4 Dystonia walk, which will take place on June 2nd in Nashua, NH. The time has been changed to 10am, with registration beginning at 9. We only have about 2 weeks left before we have to order shirts so registering online ahead of time is best so you can make sure you get a shirt. We are also still looking for sponsors, so please contact me if you know of anyone interested. 

Thank you for your love and support. 

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