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 pr
My life-long battle with Dystonia