About me

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, November 23, 2012

Parkinson's does not define you

At a Parkinson's event some time ago, I found people coming up to me saying they'd got Parkinson's, or caregivers would tell me their wife, husband or parent had Parkinson's. As I listened, I became acutely aware that nobody was thinking of introducing themselves by their name, but instead referring to Parkinson's first. It's often not what you say, but the way you say it. When introducing myself, I say "hello, my name is Elaine Benton, and I'm an author." I then may go on to speak about Parkinson's if it's relevant to the situation. The difference to me is monumental, as I see the person first, and not the disease. If you are an individual who happens to have Parkinson's, make sure you use YOUR name and don’t give Parkinson's the honour of being introduced first!!! You'd be surprised at how many people forget to say their name, or what they do, where they come from, all of which seem incidental to them, as they launch into "I've got Parkinson's". There is no doubt that as a fellow sufferer, I whole heartedly agree and admit this lousy disease rules much of our lives, and it won't go away. It irritatingly makes itself present in a pesky way, much like a three year old child who has had too many sweets and hyped up on sugar just wont sit still or go to bed. Don't give Parkinson's the satisfaction of being more important than you. You are a unique, special person, and I'm sure have interesting and wonderful things to say. So put Parkinson's on the back seat and take a ride in the front for a change. It may sound like a small difference, but the view is so much better!  


  1. I know exactly what you mean because my son, who suffered from schizophrenia, once said: "I wish that people could know me as a person; as me, and not by my illness."

    Jill S.

  2. In hospital so many times Doctors on there rounds would say on arriving at my bed this is Parkinson's. Naturally this is not my name but as you say people are sometimes called by their illness and not their name. not good.