I didn’t have a great night’s sleep, in spite of being incredibly tired when we got home last night (at about 11.30pm). It took me ages to get off to sleep, and then I was awake from about 5am, and quite uncomfortable. Although I didn’t have the severe back pain that I have experienced from other device settings, I did have some discomfort. I also have some dyskinesia in my right arm, and tremor in my left side (both arm and leg) this morning – it comes and goes… I think I’m going to leave my settings be for at least the next 24 hours and see if letting them settle will alleviate the side effects. I’m currently using Group “A” settings (which is a completely new program) and receiving 1.85v to my left side, and 2.3v to my right side. Group “B” settings are basically the same as they were previously, apart from a change in frequency from 160Hz to 180Hz, and a wider window of adjustment so that I have more tweaking flexibility.
I have quite a lot of stuff to catch up on. I email the Parkinson’s nurse with details of my videos on YouTube (because she hasn’t seen them yet). I email a selfie over to the webmaster of the Polish Medical Marijuana website (because he needs a photo to publish with an article that he is writing about me). I download the DBS programming video (that my wife filmed at the NHNN yesterday) onto my MacBook. I enter the required passenger information into our flight reservations for our holiday.
Tremor still there. Still a bloody nuisance. Dyskinesia has calmed down. Dystonia is under control. Balance is a bit pants, but I’m coping. Mood and motivation still seem good, and my energy levels are better than I expected following our long day yesterday. My speech is much improved. One of the speech specialists on the DBS team at the NHNN commented on how strong my voice was, following my reprogramming session. She was amazed to find out that I’ve had Parkinson’s for over 20 years, and that I’m not taking any Parkinson’s medication. It’s very encouraging when you get that kind of reaction from someone who sees Parkinson’s patients every day of the week!
I have a stab at writing a script for the video that Cleveland Cannabis College want me to film for them, and email it across for approval. Then I self medicate with a little cannabis, and crack open a bottle of Hobgoblin!