I was in my fifties working in the UK in palliative care when a few strange things led to me being diagnosed with Parkinson’s: I couldn’t use my hands properly, I couldn’t get them to work, and I had sharp pain in my legs.
I had several appointments with neurologists which always ended with, ‘come back and see me in 6 months.’
By the third appointment, the neurologist told me “It isn’t essential tremor”, “it could be Parkinson’s” or, “it could be another brain condition,”- one that sounded absolutely terrible and which had a life expectancy of around three years.
It gave me quite a shock. I joked about it. He raised an eyebrow. Another 6 months went by.
During this time, I was quite stressed, it was frightening. What’s going to happen to me? What the hang is it?!
Then they gave me an MRI. “Try and keep still,” they said. I asked, “for how long?!”
When I was finally diagnosed with Parkinson’s I told the neurologist that I was going to be holding a "thank goodness it's just Parkinson’s party!” But it took me a long time to accept it. I did deny it, I felt angry about it.
Five years after my diagnosis my symptoms were impacting my work and I knew it was time to come back home. It was only then that I felt I was ready to be part of the Parkinson's New Zealand community, so I got in touch.
My Parkinson’s Educator went with me to see a specialist and made me feel at ease. She understood, and was another ear and voice, at a time when I really needed her.
I also became involved in my local community and helped to organize exercise, singing and Red Tulip meetings where I could listen to speakers, mix socially and get to know other people who had Parkinson’s.
I do wish though that families could be made more aware of what you are going through. They can’t believe there are so many things that are ‘wrong’ with you and I have a list as long as my arm!
With the recent lock downs, it has been very stressful isolating but to know that I had a network of people through Parkinson’s New Zealand that I could communicate with really made the difference to me.
It’s unimaginable to think what my life would have been like without them. I would be quite lost, lonely. The educators have all been helpful, knowledgeable, friendly and caring. I actually don’t think I could have coped without them - because they understand what you are going through and that's really important. For me, Parkinson's New Zealand has been like a family where you can be yourself and feel accepted.
It’s so important to be able to talk to someone.
I am now 75 and have had Parkinson’s for 17 years. I can no longer stand up for too long. I have had to stop driving my car and my anxiety attacks do put a bit of a damper on things. My life is spent more often now on the couch, but I do Sudoku and puzzles. I have support from my carer, my Parkinson’s Educator, my Parkinson’s community, and love from my family and my great granddaughter, Manaia, my little monkey, who keeps me entertained.