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, February 14, 2014

What really gets my goat!

When someone says "I know what you're going through", unless they are a fellow sufferer or have experienced similar health issues, this sentence really gets my goat. Please, for goodness sake refrain from saying this insensitive statement. Hold your tongue, and count to ten, no matter how you urge to voice your opinion.

People assume they know me, and come out with some very well meant advice I haven't asked for, which is often inappropriate, and lacks any knowledge or understanding of my situation. I generally let such advice go over my head, for I'm not one for confrontation. On a rare occasion, if someone is insistent they know best and keep on and on till I'm driven quite mad by their persistent ill placed suggestions, not only is it extremely upsetting, but proves without shadow of a doubt, how little that person actually knows me, Gaucher and Parkinson's disease. Unlike the three musketeers where "All for one and one for all", I'd much prefer to be solo and leave my two comrades behind.

No one unless in my shoes can really appreciate what it's like battling each day living with two chronic debilitating diseases. There is a huge difference between showing genuine concern, empathy and offering support, than with the best will in the world pushing one's personal opinions on someone else who is going through hell.

Being a good listener, and actually taking in and accepting what a chronically ill person says is the beginning of making a difference and offering good helpful support. Think carefully before you open your mouth, try to stand in their shoes for one moment and ask yourself what you can say or do to help. What would you want to hear, were you in their place? I have heard some real gems in my time, some so thoughtless and ridiculous, I have literally laughed out loud. Others have been sharp like a knife and leave me emotionally wounded. On occasion a complete stranger can catch me by surprise and do or say something that warms my heart and reinforces my belief in mankind.

There's someone who never offers her opinion, yet is with me all the time through the good days and bad. She never judges me, but accepts me for who I am. Parkinson's symptoms never phase her, and she always greets me warmly, no matter what mood I'm in. Despite the fact that she is only a dog, she is a great companion, loyal, devoted and I trust her instincts implicitly. My article this week in The Huffington Post is light hearted about my dear four legged friend.


Enjoy your weekend and happy Valentine's Day. 

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