Lab rat diary week 48
48 weeks already! It means I’m halfway through and the end is in sight.
I’m now stuck (literally) with a motion tracker on the base of my spine for a week together a mobile phone for some voice and movement tests three times a day.
All to see if repurposed diabetes medicine will help slow the progression.
As the end of the trial gets nearer I’ll be digging through the upcoming research to see if there’s anything that I fit (sometimes the entry requirements are for those with more severe symptoms – give it time and I’ll qualify 🤪🤣) and that I can do without impacting too heavily on the family.
Different sort of lab rat today
When I was first diagnosed I signed up for a study which tracks the development of Parkinson’s to help with future studies of the disease. Covid interfered with the follow up visits. Today was an MRI scan along with lots of cognitive and movement tests. My brain (what’s left of it) hurts. Lots of lists of numbers (with me repeating, re-ordering and reversing), words, images, colours and blood tests too.
They videoed my movement which included foot tapping (like a bass drum) which illustrated that the disease is progressing as my left foot could barely move after a few seconds. So bang goes any chance of me as a drummer…
(Yep, Parkinson’s sucks)
Next week I’m back again for the next drug trial update, so more tests. Hopefully it will help for the future.
#parkinsons #puckfarkinsons #parkinsonsawareness #cureparkinsonstrust #parkinsonsuk #danceforpd
#parkinsonssucks
#parkinsonsdisease
Happy 3rd birthday to my Parkinson’s
Well, to be strictly true, it’s the diagnosis that’s now 3 years old as Puck has been with me for a while longer than that.
There’s no cure.
In the midst of a pandemic I know there are a lot of worse things that can happen, but sometimes having a chronic disease can be a bit shit. Someone asked me a couple of weeks ago if I was getting better. I don’t think they realised that Parkinson’s is a one way ticket, and it’s definitely downhill.
Still, I’ve managed to keep one New Year’s resolution which is to get down the gym more than just once a week for my PT session. Luckily we’re only one week into the year 😁. My bad back stems from my left shoulder stiffness, which is caused by my Parkinson’s. I need to exercise my arms more often to keep my back from locking up completely (which also stops me from being able to walk).
Tonight is the monthly “Parkies at the Pub” meeting. Should be fun watching us throw food around, but I think I’ll avoid anything with peas.
#parkinsons #puckfarkinsons #parkinsonsawareness #cureparkinsonstrust #parkinsonsuk #danceforpd
#parkinsonssucks
#parkinsonsdisease