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.

Thursday, June 7, 2012

Routine treatment

Now we've returned home, immediately falling back into regular routine, our trip feels like a dream. I sit here this morning typing today’s blog entry with one finger, which is taking forever, having little else I can do right now, since I'm hooked up to the i.v. receiving the VIPRIV medication for Gaucher. The delightful nurse, who always wears a smile, arrived bright and early at 09:00. With years of experience under her belt, she skilfully slips the needle into my vein, without me feeling a thing. Although this is her paid job, I have to tell you, she is a wonderful lady who really cares about the patients she looks after and goes above and beyond to help as needed. When treatment first became accessible for Gaucher patients, the enzyme replacement therapy was only administered in hospital, but for some years now, thankfully “home treatment” has been made available, improving the patient’s quality of life drastically, by spending fewer hours in a hospital environment. The only problem is, now that I have Parkinson’s too, sitting still for an hour and a half whilst the infusion drips the lifesaving drug into my veins, is difficult to say the least. Gaucher and Parkinson’s – what a combination!

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