It's so important to be able to talk to someone about Parkinson's



February 1, 2024


Last Updated:

February 1, 2024

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.