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!