I’m aware that it’s been a while since I’ve posted anything on the blog, which is a failure on my part.
This blog is supposed to help awareness about the disease, including how its progressing in my brain as well as developments in research. And my silence is not helping that, so I’ve resolved to post more often.
I think that it’s partly down to reluctance on my part to put out depressing posts. However I’ve realised that a blog should be warts and all, so from now on the bad days will get mentioned.
From the pictures you might think I’ve developed a watch fetish to go with the one I already have for t-shirts but it’s the 2nd part of one of my recent trips to London for the programme that is tracking the progression of the disease over a long period. The wrist motion trackers monitor me for a week and then I post them back.
Over the past few weeks I’ve noticed my leg tremor getting worse and, when stressed, my hand coordination (typing etc) is slow and occasionally erratic. I’m trying to build a 3d printer and it’s making the assembly a lot harder than before. When I’m at work trying to rush out an email it’s painfully slow. It’s not helped by the brain fog that goes with PD and makes every day an effort to just get going.
World Parkinson’s Day is April the 11th but I won’t be celebrating if you don’t mind. Another YOPD sufferer is David Sangster (link to his YouTube channel is in my bio) and he has asked people with Parkinson’s to answer 3 questions with a video. The questions (and my answers) are:
1. How does Parkinson’s feel?
Like a perpetual tiring battle against an invisible foe.
2. What is the worst thing about PD?
At the moment it’s brain fog, closely followed by the lack of movement in my left hand side.
3. What do you fear the most?
Losing myself to this disease. I know things like my personality are changing but I don’t want to stop being me. When I stop laughing then that will be the end.