I slept really well last night (because I self-medicated with cannabis just before going to bed), and slept right through until almost 9am. My wife had a really good night’s sleep as well, and I put that down to the mug of hot chocolate that I made for her with CBD infused milk. She says that she couldn’t feel any effects of the CBD, but something is obviously working!
I return my device settings to their daytime voltages, and head downstairs for my tea and Nutriblast (prepared by my wife). My wife has a tricky job on at the moment – making a loose cover for a bed-settee. She wants to go to work today, because she wants to get it finished so that she can relax and enjoy Christmas, so she heads off to her workshop in Hevingham, and I take the dog for a walk!
I have had some really moving comments in response to my vlogs on YouTube, and I spend some time this morning responding to them. I get quite choked up when I realise that I have helped someone deal with their own problems, simply by highlighting how I am managing to cope with my own.
Right sided tremor (and dystonia) is fairly well controlled at the minute, but my left side is a different matter. It’s not that it is unbearable, just that it’s a flipping nuisance! I decide that I will risk another small adjustment on my left hand side because I don’t seem to have any dyskinesia in my neck (which relates to stimulation on my left hand side) at the moment – I can always reduce it again if it’s a problem. So now my settings are 2.2v on the left side and 2.3v on the right. Balance and walking aren’t perfect at the moment, but are not causing me too much concern. Mood, motivation and energy are all reasonable. Voice – not great, but not as bad as it has been over recent days. One symptom that has crept up on me and really bugs me is muscular stiffness in my arms – particularly my left arm. During the day it doesn’t bother me (too much), but it’s when I get in the bath and try to wash my back… It’s painful, and so frustrating. I really appreciate that fact that my wife is happy to come and scrub my back, but at the same time I hate to admit that I need someone else to perform this task for me. It’s like admitting that Parkinson’s Disease has got the better of me. When I first had my DBS programmed I was amazed at the effect it had on my muscle weakness and stiffness. As time has progressed, and my programming has focussed more and more on targeting my tremor, then the effect upon my muscles has gradually declined. It’s also possible, of course, that DBS control has remained static, but that my symptoms have progressed – who knows?
We are having dinner with my wife’s eldest son and his fiancee (and our granddaughter) this evening, so I make sure that the dog has a good run around this afternoon, get a load of logs in from the garden (in case we want to light the fire when we return home) and then drive over to Hevingham to join my wife and family.