I am thoroughly cream crackered (knackered) today. I suppose it is only to be expected after having such long day yesterday – we didn’t arrive home from London until 11.30pm last night, so it was well after midnight by the time we got to bed.
My new settings are not as good as I had thought they were yesterday, although this could also be down to being so tired – my voice sounds slurred and indistinct (to my ears), tremor is still breaking through quite strongly (mainly in my left leg), muscular tension in both arms is exacerbating muscular weakness, my balance and walking aren’t great, and dyskinesia in my right arm has me flailing around when I get to my feet from the sofa. I’ll have to see how things are when I have recovered in a couple of days, I’m certainly not going to give in to the temptation to fiddle around with my device settings just at the moment.
I’m not really complaining about my settings. As my wife said (while we were at the hospital yesterday) it seems wrong to complain about my DBS when we consider how my life would be if I didn’t have it. It’s just that if it is capable of controlling my tremor without affecting my voice, then I’d like to have that setting programmed into my device, please. It’s not that straightforward, however. It’s all a bit hit and miss, this device programming lark. Nobody knows quite what is possible, and it is a series of trial and error adjustments that end up being saved to my neurostimulator, to go away and live with for a while…
I have a brief tidy around the kitchen and lounge, and then run the vacuum cleaner around downstairs before my wife gets home.
After dinner, I indulge in a little cannabis and a beer (just for a change).