Yesterday morning, the nurse from the company who make the medication I am receiving, arrived bright and early to administer my i.v. treatment for Gaucher disease. It takes approximately one and a half hours for the medicine to complete dripping at a slow rate, during which time I usually can't do much, whilst attached to my i.v. stand. I have known the nurse for quite a number of years and apart from her being a lovely woman, I admire her dedication and work ethics, not to mention the genuine concern she has for the Gaucher patients in her care. What I didn't realise until recently, was that she is responsible for Gaucher patients being able to receive "home care". Not only does this relieve hospitals of costly hours spent administering the enzyme replacement therapy in outpatients wards, but it is a huge improvement which increases quality of life greatly for patients. Instead of spending the best part of a day every two weeks in hospital hooked up to an infusion receiving the enzyme that Gaucher patients are missing, possibly missing precious time at school or work; to be able to receive treatment in the comfort of one's own home at a convenient hour, is of huge benefit to all. So should this modest wonderful nurse happen to be reading my blog this morning - I'm sure the many patients who have gained significantly like myself, would like to join me in saying a huge THANK YOU for not only thinking of "home treatment" but making it a reality.
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.