In Jan 2013 my life-partner and soul mate, Suzie, was diagnosed with MSA (Multiple System Atrophy), a rare, incurable Neurological illness. Only days earlier she had also been diagnosed with an equally rare cancer. Our lives were devastated and changed forever. But, through prayer and faith, we faced one day at a time, and I continue to do so without her. My desire is to offer insight, information, hope and encouragement to other people who face their own life changing illnesses or bereavement.
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Sunday, 16 June 2013
Nov. 2012: Back to the Neurologist....
With the cause of Suzie's illness still a
complete mystery we prepared ourselves for our forthcoming consultation with
the Neurologist, armed with a written list of Suzie's ever-increasing symptoms:
and hands stiff and numb; cannot write;
co-ordination and manual dexterity; hands & feet always cold;
She has to 'instruct' her legs to make them move; her feet get 'stuck';
Legs shake when trying to move them;
slurred and can't get words out; too much saliva; Reduced facial expression;
Poor spatial awareness;
Every task is a huge effort and done very slowly. More recent symptoms included: Shallow breathing, wheezy and persistent cough; Breathlessness
with even minor exertion;
(With the benefit of hindsight we now realise that the breathing problems were unrelated to the other symptoms, but we didn't know that at the time.)
The Neurologist admitted that he had run out of ideas, although he could clearly see that Sue's condition had deteriorated significantly. He still regarded Parkinson's disease as 'extremely unlikely', but in the absence of any other diagnosis he considered it worth starting a month's trial of Sinemet (a combination medication of Carbidopa and Levodopa used for the treatment of Parkinson's disease). We were to keep a recordof her symptoms and note any changes. He also suggested that Sue should be referred to one of his senior colleagues for a second opinion. We readily agreed to this, despite being told that it probably wouldn't be until well into the new year. We were just glad to feel we were actually 'doing' something at last because, by this time, we were becoming so despondent and disheartened by the unrelenting 'not knowing'.
Would anyone ever be able to find the cause of Suzie's illness? We were convinced that she must have some unknown disease that hadn't yet been discovered. We even began to consider the possibility that her symptoms would end up being investigated by medical research scientists and eventually lead to the discovery of a completely new disease. With a rather feeble attempt at humour we suggested to our friends that, in years to come, people all over the world would find themselves being diagnosed with 'Suzie Syndrome'!!