I am awake, on and off, from dawn. I get out of bed just after 8am, and leave my wife to catch up on her sleep. The dog is pleased to see me, thinking that she’ll get an early breakfast. I still feel extremely weary, and can’t understand why I couldn’t stay asleep while I was in bed when I could easily nod off again now that I am not!
The sun is out, and the river looks wonderful, even if the wind is a little too strong for comfort. My balance is still off, left side tremor persists, right side tremor is unpredictable (but generally under control), and my voice seems a little weak and husky today. Dyskinesia seems to be a little less troublesome than yesterday and I wonder if it is starting to abate now that my brain is getting used to the new programming. Dystonia is still quite uncomfortable in my right foot, but it’s been worse.
My wife wakes, puts the kettle on, makes toast. She’s good like that. We decide that we are not going out on the boat today because the strong wind will make boat handling difficult, and we don’t want to be doing anything difficult today. Instead, we pack our things, return home and then go to tend to our neglected allotment. Weedkiller is applied to most of the beds by my wife, whilst I lift the onions and dig up a few spuds. I manage about 30 minutes before I’m ready to drop. My motivation is still very low, but I did manage to make myself help out at the allotment – something I had been trying to make myself do for the last couple of weeks – so it must have improved slightly! I still lack energy, though. My wife thinks that my mood is a little bit low – she says that I’m quiet and not my usual self. She should know. She could tell which of my previous settings I was using just by looking at me. I am going to persevere with the Group ‘B’ settings without making any further adjustments – my symptoms appear to be changing without my interference: whether that is for worse or better, that’s something that will become apparent over time, I think.
Hi Well done you have taken a massive leap under going DBS and I have no doubt it’s been really challenging .DBS as I see it enables us to have a better quality of life but it’s not a cure .So if you could introduce some more exercise (that you enjoy ) dancing, group walking singing. Eat well , meditate and by taking an action it will give you hope and that will in turn trigger the motivation you talk about .Hope this helps you and your family are amazing supports for each other
take care Mags
Hi Mags
Thanks for your comment. DBS has, indeed, been invaluable in giving me a quality of life that I otherwise wouldn’t have. I’m generally very positive about it, but I was wanting to present a “warts and all” blog, which I found difficult to source when I was looking, immediately before my surgery. I do try to take exercise every day, but motivation is the killer. Luckily we have a dog! I’m pretty sure that my DBS settings are responsible for my mood, because when my device was first programmed (and again when I was programmed on 2nd August) I felt fantastic – full of energy and as motivated as I’ve ever been. Unfortunately, side effects have made me reduce the stimulation and that has also resulted in less energy and motivation, and more tremor. I remain certain that I will find settings that will give me both tremor control and good mood!
Cheers,
Ian