A sad lonely weekend as I 'waited' for the new week to start and my scary appointment.
With little company or stimulation this weekend I found myself absorbed in thoughts regarding the prion disease - no doubt the imminent visit to the clinic/hospital causing me unease and internalised stress.
I tried session at the gym for an hour or so , but struggled physically & couldn't find the focus to really get into it , but stuck with it. The fatigue of an hour of gentle exercise really takes it out of my legs' ability to carry out the task they were designed to do. I'm feeling the gym work may have to stop as a swap for energy for general energy for mobility.
I'm keen to get the appointment out of the way and get back home on Wednesday so I can get focused on more vibrant and satisfying matters.
The cohort study proved to be challenging - as much in getting to the venue and around the hotel as the tests themselves:
A drive to London (me as passenger)was facilitated by a great service NSL ,manned by volunteers!! whereby they drive patients from home to hospital & return, I had a two night stay in the hotel either side of a full day (9-7) full of tests , tests including various physical, cognitive and neurological and a full physical examination ...results TBA but some feedback was positive eg. regarding my cognitive ability, there is a clear physical decline that is affecting my passion for life.
The day built to a crescendo.....will a one hour full body length MRI scan - both uncomfortable and claustrophobic.
I left the hospital having made the decision not to return again due to the strain, physically and otherwise - the intervention can continued to be supported as the team can come and visit me at home for a general assessment - seems like a more suitable option now.
Whilst in London I was able to catch some time with two of my children (now adult form!),as they came to see me...this made the trip less painful and certainly helped me in remembering my broader role as father and not just patient. I was thankful to see them both as their location and lives mean that we don't get much chance. They were both seemingly doing just great :) Proud and humbled by them both..... on their respective journey's.
Friday rounded off a 'prion disease focused' week with a lovely trip to local hospital to see my speech and language therapist- whilst there are some minor issues, we felt there will be no need to visit the dept. again until after Christmas, as I do not seem to be having too many issues here. Difficult questions posed by the therapist really made me think about the difficult experience ahead - not easy ...
Positives >>>>>>>>>>>>>>>>>>>>>>>>>>>>
My next focus (goal) is to make it to see Star Wars VII, I have tickets in advance and find myself genuinely excited at the thought of a new instalment in this story, who said adults can't have fun !
I think I like the theory of these films - not just because of the literal story but the theory and depth behind the jedi ( of which I am clearly one).
Two weeks to go......
Today (Saturday) I took great pleasure in meeting one of my good friends at a pottery studio where she creates wonderful one-off pieces, this gem of a place harbours great talent and work created by the group here. I was given the task of creating something from a lump of clay..... I had an admirable stab at this and was reminded how much pleasure and therapy I get from creative work. Unfortunately I forgot to take a picture .......
BIG THANKS :)
Note to self to pick out as many of these sorts of activities as I can pottery seems another good one to add to the schedule.
Next week is a mixture of stuff for me some more (YAWN...) appointments to do with this disease and the impact it is having in several areas of my life (home adjustment plans, physiotherapy) ....
From a progressive viewpoint I am making an attempt at returning to work on some short voluntary shifts, hopeful of a more permanent go at things in the New Year while I still can (even if in a very limiting role) and a focused effort at writing an assignment for my degree course - something that with all the other distractions in my life I have been struggling to apply myself to.
We push on.........
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