I wake at 5.30am. I’m not ready to get up yet, but I’m wide awake and no chance of going back to sleep with the amount of tremor I’ve got going on. Dystonia in my right foot is also really bothering me. After lying there awake for half an hour I decide to switch the neurostimulator on. Immediately my tremor and dystonia is moderated, and I am able to grab a couple more hours of sleep. When I wake up again, just after 8am, I am quite uncomfortable and starting to thrash around again, so that side effect hasn’t disappeared just yet!
My wife wants to go shopping in Wroxham for some baby stuff (for our granddaughter) and some picture hooks (so we can start moving our picture collection out of the loft and onto our walls). Whilst we are there, the heavens open and there is a deluge of biblical proportions. We wait inside a store for almost 20 minutes for it to abate, and when we do emerge it is to the sight of the roads running like a river and the pavement being completely flooded! British weather never ceases to amaze me.
Tremor on the left hand side is a little better today, and I haven’t noticed any increase in dyskinesia in my neck as yet. I will wait until tomorrow before increasing stimulation any further on that side, though. Tremor on the right hand side is quite pronounced, but I still don’t dare to increase the voltage on that side for fear of provoking more dyskinesia in my right arm and leg. I call Joseph at the NHNN because I still haven’t had a reply to my email of last Wednesday and I need some advice from him. There’s no reply, so I leave him a message to give me a call to discuss my situation and current concerns. Still no reply by the time this evening comes around, so will have to try ringing the secretary tomorrow – perhaps he’s on holiday?
I self-medicate (a really nice bottle of Chateauneuf-du-Pape that a friend brought around and we didn’t get to open, and then a little cannabis to finish the job) and this calms everything down nicely. I have a little more just before going to bed to see if I can avoid lying awake like last night.