June
Visit from Dietician on 21st
.
Part of my report to her:-
Jean now chops up food smaller than in the past and
avoids chewy foods as jaws can now tire over a shorter period. Another problem that can very easily arise
now if not focusing is I bite tongue or cheeks while chewing. My mouth can get so
tender that food finds its way to roof of mouth where sucked until dissolved. I have
great faith in TCP though as remedy for a quick repair of damage. Smaller mouthfuls have certainly helped in
controlling biting inside mouth (maybe also good tip for people who want to
lose weight).
Again,
I’ve reverted to the book “Mind over Matter” previously mentioned in 2011
for inspiration to “dig deeper, and focus the brain on particular parts of body
I want to move next”. This sometimes works, but feel its my final attempt in
connecting the brain to movement, especially limbs.
To
widen subject matter away from MND, folk that have influenced my life.
First was
Fred Wood, my boss whilst a ground maintenance officer in the civil service, a
tenacious, but fair man with an enquiring mind who taught me to always be true unto thyself, and have a good structured
reason for my actions, or decisions. The
other was clarity and brevity in writing letters or reports.
The
other gentleman who influenced me, was Cliff Williams, a Yorkshire man, who
came north in his mature years. Anyway Cliff again, a very tenacious man who
had polio from an early age with legs severely twisted. But in spite of his
disabilities he bought a two acre plot on a slope, built a house and our firm
was taken on to landscape the rest. Well! One day in the autumn he got himself
up a steep rise, half tumbled onto his haunches and proceeded to dig holes and
plant bulbs. I remember at the time thinking “Why in god’s name does he persist
when we are on site to do it for him”. But now being in a similar plight, I fully
understand Cliff’s dogmatic persistence as I am exactly the same.
Certainly
since being severely disabled I adhere to the saying, “one should have to walk
a mile in another’s shoes before questioning, criticising, or forming an
opinion on them.
If
involved in the simplest of tasks I find it’s so easy to get frustrated, this
is a combination of the effort, time, and ending up completely drained of
energy. Of course extreme fatigue is one of the main characteristics of MND.
Although
carers are in attendance 7 evenings, and 5 mornings a week Jean is still very
heavily involved in my care and I thank her for unfailing support and caring
qualities that make life that much more
acceptable.
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