Five years ago, on January 30th, my life changed. It changed because a consultant uttered the words ‘you have Parkinson’s’.
In the months that followed, my marriage, my career, and my sense of self took an almighty battering.
Just over a year ago, I started to write my story, because I had struggled – and continue to struggle – to make sense of my condition. I reckoned others might have the same problem, and I hoped that by sharing I might be able to help both them and myself.
I had no trouble finding out technical stuff about Parkinson’s, this being the age of instant information, and at some points it felt as if I was finding out too much, too fast, especially during the process of diagnosis. But there was far less information on the way it makes you feel … especially when diagnosed at or before 40, what they term ‘early-onset’ Parkinson’s.
Bloggers such as Zalamanda, Jon Stamford, Colleen Henderson-Heyward, Viktor Tron and others have gone a long way towards redressing this balance, but I wanted to take it a step further.
The book pulls no punches. I try to talk to the reader the way I wanted people to talk to me, both during diagnosis and now. I didn’t want to hear people telling me how they knew I’d fight it, how I had to remain positive, how you couldn’t really tell, all that stuff. I wanted to confront the reality of the situation, so that I could find a way of dealing with it.
It’s been difficult to write. Some people have, and will, find it equally difficult to read. When I hear that someone’s reading it, part of me leaps for joy that they think something I’ve written is worth reading, while another part of me cowers in the corner.
Ultimately, I wrote it because I had to.