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
Visit 5. London bound
eautiful sunrise at my favourite time of year. I’m off to London again to the UCLH Research Facility to collect the next batch of drugs (along with a blood test, weight measurement and questionnaires etc). Visit 5 (out of 10) and the time is flying by. We’re in week 36 out of 96 and, without wishing my life away, I’m already looking at what research is coming along in future to see if I can take part.
I’m noticing more and more the little things that have to be adapted: doing the ironing takes longer when your left arm doesn’t do as requested; buttering toast has to be done with the “wrong hand”; buttoning a shirt takes a while longer as I wrestle with fingers that move like sloths.
Sitting on the train is slightly uncomfortable as the evil thumbs wielded during my massage left quite a bit of bruising (well it feels like it anyway!) but my back and hips feel so much better than they have done in weeks so I’m hoping that the end is in sight for my back pain and I’ll be able to get a bit fitter for the Portsmouth Marathon just before Christmas (sorry, was I supposed to be taking it easy?)
#puckfarkinsons on tour
While I was still processing my diagnosis (and I think I still am) I decided to get involved with as much research as possible. I’ve already been to Queen’s Square in London for some scans and cognitive tests which form part of a long term study into the development of the disease. Today it’s a visit to King’s College Hospital to take part in a study about sleep problems and Parkinson’s.
One of the many symptoms of Parkinson’s is sleep disorder. It’s a bit of a double whammy – Parkinson’s interferes with sleep, and sleep is needed to help the brain recover from daytime activity. Not good with a neurodegenerative disease.
So I’ve had more blood tests and am now wearing an activity tracker for 2 weeks as well as having to fill in a sleep diary. And this will be repeated in 12 months’ time.
It takes years for research to get through the system so I hope that whatever I do can help those who get hit with this disease in future. (The bonus today is that I can visit my eldest daughter as she’s studying just a few minutes away.) Thanks for reading, and please share the fundraising link in my bio.
#parkinsonssucks#cureparkinsonstrust
#parkinsons
#parkinsonsawareness
#parkinsonsdisease