I don’t want to sound like a moaning old man but quite frankly the level of pain I’m getting from Distonia is quite distressing. It seems to have increased quite rapidly in the last few weeks. It may be coincidence but seems since I was put on a drug called Midodrine Hydrocloride to try and up my blood pressure before my Angiogram next week (suspected angina). My GP is reluctant to take me off it as it was prescribed by cardiology.
It’s strange but when I’m sitting down or lying down there is much less of a problem. I have two artificial knees and when standing and the Distonia is at its worst it pulls my knees together and the pain is almost unbearable. (Doing the pots is out; only joking folks).
Also since I’ve been on Opicapone to reduce switch-off levels and duration (which has worked dramatically) there has been an increase in involuntary movement (Dyskenesia) which makes the Distonia even worse.
I know Betty Blue had DBS and that eased her suffering a lot, but at eighty I’m not allowed to have the procedure done. (How are you doing by the way Betty?)
Are there exercises, relaxation techniques, etc that might help? I’ve heard the Alexandra Technique is helpful. Any advice would be welcomed. I want to be able to walk and stand albeit with sticks or wheelie zimmer most of the time. I’ve accepted that my Rugby days are over.