Prior to being diagnosed, I attended a hospital appointment
to take part in some tests to eliminate other potential causes of my symptoms
(there is no diagnostic test for Parkinson’s). While at the hospital, I noticed
a fundraising poster produced by the charity Parkinson’s UK. It exclaimed,
“Join us!” and I thought, “I’d rather not join that club!”
It was an unexpected aspect of my diagnosis when it came
(but obvious in hindsight) that I would probably meet other sufferers of
Parkinson’s. No disease is rare enough to not affect at least one other person.
I found it quite a daunting prospect. I thought I would see a reflection of my
own symptoms in the people I would meet. Worse, I would see my future and I
wasn’t prepared for that.
I knew I had to challenge my own preconceptions so I
attended a Parkinson’s UK open day (I did, in the end, join them!). I still
felt my fear. I imagined I would see a Hieronymus Bosch-like vision of hell, a
mass of humanity tormented by Parkinson’s demons, people crying out in agony
and pain. With this in mind, I took a deep breath and crossed the threshold.
What did I see? To my pleasant surprise I saw people chatting and drinking tea.
I thought, “I can chat and drink tea too!” Then I felt empathy, as if I had
climbed into the same boat with these people. They knew some of the challenges
I was facing with my diagnosis and I knew some of theirs. Fellow sufferers are
a great source of reassurance and for strategies to cope. True, I saw some of
my symptoms in the people I met but it wasn’t my future that was reflected back
to me, it was a feeling of empathy finally for myself. Maybe I can cope with
Parkinson’s!
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