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, June 19, 2015

Gaucher - Handle With Care

Living with Gaucher disease presents its own challenges. Even something as simple as an X-ray poses difficulties not understood by those who know nothing about this rare disorder. Upon one visit to an ER I had chronic bone pain and required X-rays. The technician, although far from green, had no idea how much pain I was in. Being handled roughly can prove frustrating for he didn’t realise I needed help - I couldn’t get onto the bed and manoeuvre myself into position. I required assistance in moving my legs gently for hip joints are often delicate and painful. I almost need a sticker on my forehead “handle with care”.

An X-ray technician needs to understand when dealing with a Gaucher patient, every move can be excruciating, and the bones require delicate handling. Positioning of the patient’s limbs and joints is also paramount in taking a good X-ray. A technician needs to know what to look for and be able to recognise the abnormalities that are indicative of Gaucher disease. 

Take a look at my article this week in The Huffington Post which is about hosting dinner parties with Parkinson's in tow! 

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