We all
have our strengths and weaknesses, foibles and fears. I don’t like being in
confined spaces such as an MRI machine, and you’d never catch me paragliding or
bungee jumping. Snakes and slugs come high up on my list, but without doubt my
greatest fear of all is being unable to communicate.
Thanks to
Parkinson’s I was hospitalised several times during 2017. Trapped in a body
that no longer responds to Parkinson medication, unable to swallow or speak, no
doctor or nurse could possibly ascertain if my cognitive skills remained
intact. Add into the equation that any anxiety or stress greatly exacerbate the
disease – and hey presto, my greatest fear of not being able to communicate in
any form was realised.
As the
doctors made their morning rounds, I lay there in my hospital bed like some
distorted forsaken wax statue from the Chamber of Horrors at Madame Tussauds. I
couldn’t move, and my unblinking eyes were transfixed on a ceiling tile above
my head.
The
morning doctor’s rounds were not at the same time each day and not knowing when
they would appear made it very difficult for my husband to be there with me.
Over the years, my husband has taken an extraordinary amount of time off work
to care for me. Due to the severity of the “off” I was experiencing, I couldn’t
even use my mobile phone to call a family member or friend to step in as an
advocate to speak on my behalf.
Later in
the day when I was “on”, I wrote down all the questions I had wanted to ask the
doctor, along with pertinent details he didn’t know. Being a girl guide at
heart, with just a touch of OCD for good measure, I am very methodical and
super organized. I do my best to be prepared for every eventuality. The
following morning, I was again “off” as the doctors made their rounds, but I
managed to avert my eyes away from the captivating ceiling tile and locked eyes
with the doctors’ and he saw my notepad clutched tightly in my grasp. He read
my questions and comments out loud to his entourage. Through this limited form
of communication, at least it was now established that I had all my marbles!
If you
ever find yourself in the situation of being unable to communicate, make sure
you have an advocate - someone to speak on your behalf who has your best
interests at heart. I can’t stress enough how important this is.
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