A photo of me at home

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

Wednesday, 18 September 2013

Life with MND - 2012 - Part 1

The start of another year.....
 
January
What a start to the year!! On the first, Jean caught a cold, but in spite of doping myself up with paracetamols every four hours, by the 5th I’d caught it. Mind, within a week I felt I’d pretty well shaken it off, but called in the Doctor anyway, who decided because of the MND would put me on a week’s course of antibiotics.   

Due to the speeding up and degeneration of arms and hands, I wrote my GP concerning an “emergency carer’s package”. The Doctor, accompanied by a nurse, made a home visit when Power of Attorney and “do not resuscitate” were discussed.

I knew the next progression of my “hellish disease” would leave little room for manoeuvre. As my paralysis trundles on, sooner than I perhaps expected, I’ve had to seek Jean’s assistance in raising my left arm to grip the shower rail on entering the shower, also pulling up my trousers and tying the waist button.
This is a combination of finding it now very difficult to get my arms round behind my back, and thumb / forefinger too weak for finer motor skills. 

February
Monitoring myself so closely, whether through daily exercise or just observations, I notice subtle changes accelerating in what I can and cannot do.

E encouraged by warmer temperatures I thought it time to try getting in and out of the car. I managed ok — fair chuffed!!

On the 22nd I caught another cold, Jean called in the Doctor the next day, and again he put me on a week’s course of antibiotics. On the first few days of the cold my brain was befuddled and I was totally reliant on Jean to assist with all daily tasks, but then as cold diminished and mind cleared, I fell into my previous routine of independence. It certainly strengthens my firm belief that you need an active, focused, and concentrating brain to achieve my present level of capabilities. 

March
Losing strength in the right arm has posed all sorts of problems, but one of the most imminent is throwing back the duvet and repositioning it so I can cover myself again when getting up to the toilet through the night.  The district nurse took along a sheath attached to a leg bag. I tried the sheath but no way was I happy with it. In the end, I’ve settled quite comfortably to using the bottle without having to get up. Just as well, as in the latter stages of the month I’d totally lost the ability to swing myself in and out of bed using the “grab rails”. This was a big blow to my confidence, independence, and freedom, especially in the mornings, as no way can I get out of bed without assistance.

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