About me

PROFILE:
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.

Thursday, August 2, 2012

What’s wrong with you?

When people ask me about my health, wanting to know what’s wrong and why I walk with such difficulty – an easy simple answer does not spring to mind. Most people have not heard about Gaucher, being a rare disease with only approximately 10,000 reported cases worldwide. Parkinson’s, although without doubt far more common with an estimated 8-9 million sufferers in the world, is still misunderstood and the general conception that one should be old and shake at all times like a leaf on a tree. However there are approximately only 200 known patients with both diseases in the world - now that's a pretty small number! I never know whether to say Gaucher, to which I am normally met with a bemused expression and find I then have to explain, or to simply say Parkinson’s, which everyone has at least heard of, even though they may have a stereotypical picture in their mind to which I do not fit. If I'm in the mood for a lengthy discussion, then I say both diseases, which usually throws a person off guard, making them wish they could immediately retract their question. Sometimes an unsuspecting person can end up receiving a personal lecture, educating them about Gaucher and Parkinson’s disease. So beware when asking someone “how are you?” for you just might end up getting a lengthy lecture!


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