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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