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.

Sunday, February 12, 2012

Home infusion, no intrusion

Having enzyme replacement therapy for Gaucher disease at home thankfully decreases the necessity for frequent hospital visits, thereby improving vastly my quality of life. Treatment of Gaucher today barely intrudes on my life at all, although I do feel somewhat like a pin cushion, many needles stuck in me over the years, but I take this in my stride. So here I sit once again, hooked up to an i.v. line, which I receive twice a month keeping Gaucher disease under control. Gaucher being a rare chronic genetic disease, there was no treatment available until 1990, when the first ever treatment was finally tested and proven. Today, fortunately science and medicine have come a long way, and there are several companies now making the enzyme that Gaucher patients are missing. To date there is still no cure, but I live in hope, and as I said to a fellow PD sufferer just yesterday, I am the eternal optimist!

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