February is rare disease month and although dystonia and 22Q are not diseases they are both rare “disorders”. So I figured now would be a good time to update you all on me & Cody (and the rest of my family)! This morning, as I made my way to target, I could feel my head pulling to the left. This hasn’t happened for a long time but as the pain started I knew exactly what was happening. By the time I got to target, my neck was in a complete spasm and I was unable to straighten my head. I sat in the parking lot for about 20 minutes as I waited for it to pass. It brought me back to before I had kids when the same thing happened in a Marshall’s parking lot and I had to call my mom to come help me. The last year has been pretty tough with my dystonia. My DBS doesn’t really work anymore so I take frequent trips to Albany to get Botox in my hand, foot and neck. It hasn’t been helping with my foot but it definitely relaxes my hand. Unfortunately it also makes my arm extremely weak and pa
My life-long battle with Dystonia