I get up just after 8am, having woken at 5.45am and dozed. I did wake a couple of times in the night – 2.30am and 4am – but went straight back to sleep.
I switch my neurostimulator on before I go downstairs, and wait for the dyskinesia to return. I don’t have long to wait, although on the plus side my tremor and dystonia is fairly well controlled on my right side , and tremor on my left side is only moderate. My right arm is thrashing around quite a lot, and then I notice it also in my right leg. I had noticed it ever so slightly yesterday afternoon, but thought (prayed) that I was mistaken. It certainly isn’t severe, but I am concerned that it will get worse, as my right arm has done. I’m finding it quite difficult not to throw my mug across the room when I go to pick it up to drink my tea. It’s really quite uncomfortable, too. After a couple of hours I decide that I cannot tolerate the Group ‘A’ settings and switch back to Group ‘B’, 1.1v on my left side and 1.6v on my right. Dyskinesia reduced in arm, neck, leg. Dystonia increased in right foot. Tremor increased in right arm, left leg. It’s a balancing act.
I check my signature (my benchmark) and it looks like my signature should, so that’s good.
Unless this damned dyskinesia suddenly disappears, I don’t see what else I can do with regards to exploring the settings on my device. I will email Joseph with the data I have collected so far, and see what his opinion is. My feeling is that I need Joseph to re-program my device, but if the dyskinesia is going to be stimulated by any changes he makes then it will be a wasted trip. It’s a difficult call, and one that requires input from Joseph, because he is the expert. It costs me about £10o and a day away from home to go to the NHNN for a simple 30 minute appointment. I don’t begrudge the time, but can’t really afford the cash!
I get through the day, walking the dog, making phone calls, posting on Instagram, Twitter and Facebook for my wife’s soft furnishing business, writing my blog. My symptoms remain fairly stable, and it’s just the right arm that remains somewhat troublesome. I’m on the lowest settings that I have programmed into my device, so the only course of action if the dyskinesia gets too severe is to switch off. I really don’t want to do that (other than when I’m asleep).