A photo of me at home

A photo of me at home
A new photo of me and Jean at home

Friday, 18 October 2013

Life with MND - 2013 - June - Part 2


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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