April
Jean’s mystery virus
reappeared after an absence of nearly tree years, and so she was admitted to
“The Infectious Unit” Aberdeen Royal Infirmary for eight days of tests: result
was no further forward on finding the cause of the virus.
August
Took collection of the new
updated “Lightwriter SL40” speech communication aid: it has the facility to
remember the words you use and the way you use them, so as one begins to type
it will predict, and display words that you are likely to say next.
I
had my assessment appointment with the Rehabilitation/Rheumatology Clinic. No
real marked change in my condition so next visit in nine months time.
September
Jean admitted to A &E
for exploratory examinations: kept in hospital for three days: result was they
found she had pneumonia, and it could take up to six weeks to get over.
October
Whilst Jean was in
hospital, Ross, our son was coming in for “sleepovers” Unfortunately; he had a
bad cold which he passed onto me.
December
Overall 2009 showed very
little deterioration: weight has remained stable, and quality of life is good.
My
Thoughts
With
forward planning on her “feeling fine days” Jean had prepared freezer meals for
emergency circumstances, such as being admitted to hospital on very short notice:
it is part of our “emergency plan”.
I’m
fiercely independent. My motto being (never trouble another for what I can do
for myself) Jean and Ross are both very good at stepping back: yet so attentive
when needed. The vast majority of people instinctively want to help when they
see me persevering with any of my many daily tasks, but it gives me a great
feeling of accomplishment when I complete it.
I
suppose this year I’ve really upped my supple exercise routine. Anyway it’s a
discipline, and with approximately 15 hours a day in wheelchairs with no pain I
feel it’s worthwhile. At times I feel I’m not as supple as in the past, and am
inclined to blame the MND, but I forget my age may be a factor.
On
hindsight loosing my speech was worse than my mobility: this really surprised
me! However I consider I’ve adapted pretty well with communications through the
use of what I’d call modern technology: mainly my Lightwriter, emailing, and
texting. I also practice hand writing: at times its fine, others it’s a bit
illegible, but overall Jean can usually read my notes.
Regarding
the Lightwriter, It’s now three years since I got the original one so I wrote a
letter to my speech therapist for “feed back” along similar lines to the
following.
First
let me say I’ve just taken on board what is beneficial to me at this time:
“the full scope of the machine is far to clever for me”
I’m
lucky I’ve a genuine interest in others, so if I get prior warning of our many
visitors I store questions in readiness, and feed them in during the course of
our conversation. Alternatively, I inject informative remarks and questions
just like any normal speech.
The
Lightwriter is ideal for up to four in the company, more than that I’m inclined
to sit back and listen, punctuated by my occasional remark. Outside in bright sunlight is a bit of a
non-starter as people usually read the display screen as I type, but with my
slow typing its easy to lose “the thread” of the story, or sentence.
As
stated previously I caught a cold in October—the first real cold I’ve had for
years! It’s amazing how my body reacted: because I’ve no ability to get rid of
mucus, and phlegm –i.e. spitting, blowing nose etc. it exited in my bowel
movement. (I suppose a bit like a baby)
Whilst
on the subject of toileting as other muscles weaken I believe my bladder, and
bowel muscles have also weakened. “To avoid, and minimise any accidents” the
minute I feel a need for the toilet — I go! Because I’m anticipating going, and
it can take me five minutes to be looking down at “the porcelain”--- and we all
know “how long a minute is depends which side of the bathroom door you’re
on”
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