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Dystonia update

It has been almost 11 months since my DBS surgery. I’m learning and trying to be patient and positive. I have had two hand surgeries in the last 6 months and it’s very hard to do every day tasks. For the majority of the time, I am almost symptom free but I have been having some problems with my right side. My right foot and my right hand have both been stuck a couple times. I have a lot of back pain and last night had a pretty scary “attack” in the middle of the night. My back went into spasm, my right arm got very tight and I was having a hard time breathing. Jim got me through it and I managed to go to sleep and wake up with just a little stiffness and pain in my back. I don’t know if my dbs settings need to be changed or if this time it’s just not working as well. It really scares me. I have an appointment in Albany in January so I am hoping to change the settings a little and see some improvement. I still will always recommend DBS to everyone I know with dystonia. I’ve had some pretty shitty luck but it’s rare and I still truly believe it has helped me tremendously. 
As for my left hand... it’s been 3 weeks since my last surgery and I’m slowly getting some strength back. I don’t feel at this time that it was that successful with my index finger. I have been having a lot of pain and it often gets stuck and snaps when I try to bend it. It makes some easy things very difficult. 
Other than these few small setbacks, I am doing well. The kids are both in school full time and doing very well. Hailey is playing basketball and loves it and Cody is doing karate. They are both happy, healthy and smart! I am still working as Codys LNA and I also got a job to be a substitute teacher at the kids school. This will give me something to do while I continue to get healthy and search for a real career. Jim and I are doing amazing and have started to plan our wedding for next year. I couldn’t ask for a better partner to be by my side every day in this crazy life.

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