A photo of me at home

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

Friday, 6 September 2013

Life with MND - 2011 - Part 1

This is the start of another year's notes. There are a few written this year, I will upload them over the coming days.


January
I’m breaking a long standing tradition at the beginning of this year in that I’ve made no New Year resolutions because of the on going progressive weakening of upper arms and hands. In the past I’ve usually fulfilled any resolutions made, now feel I’m no longer in control of my destiny. I’ve managed to wean myself off my prescribed medication to help me sleep—fair delighted!!

March
Made an appointment with my GP for annual pill review and samples of bloods to be taken. I have had to introduce a few variations with regards my showering so that I can keep my independence. I’ve developed a tendency whilst in the manual chair to leaning to the left: this appears to be caused by the wastage of muscles in the left hip area.

April
Having contacted the GP regarding muscles spasms in bed it was decided to up my medication “Baclofen” from 130mg to 140m,g before bed –it’s solved the problem! 

May
It is now nine months since my last assessment at the Rehabilitation/Rheumatology Clinic. As I’ve no speech I always write reports for all “Professionals” involved in my illness. Here is a condensed version.

Since my last appointment there has been a steady on going deterioration in, shoulders, arms, hands, and legs.  I am still fiercely independent ( bearing in mind MND dictates what is permissible) but I admit to being a bit apprehensive about what the future holds when I can no longer adapt, and improvise to further disabilities.

Learning to accept what you cannot change has led me to a reluctant form of contentment, which is impossible to describe unless one has been there. However quality of life is still very acceptable, so I see myself as pretty lucky!

At my request the Physiotherapist made a “home Visit” to advise on alternative supple type exercises, which may be beneficial to me as the shoulders and arms weaken.

She also requested that we submit a “carer emergency scheme” for any unforeseen medical problems happening too Jean, such as in 2009.

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