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.

Wednesday, June 12, 2013

Ghost writer

I am part way through writing a novel and somehow just don't seem to have the required time to dedicate to this half finished project. I hate leaving things half done, or not completed as they should be - it's not in my nature. I am kept so busy with writing regarding advocating Gaucher and Parkinson's disease that I sometimes wonder if I'll ever finish my novel. Here's a strange thought; imagine leaving this world with a written piece of work unfinished! I would have to come back as a ghost to finish what I started - which brings a new meaning to the term 'ghost writer'! But seriously I have no intention of going anywhere, I've simply got too much left to do.

Parkinson's is a journey of self discovery, and although I am fundamentally still "me", I have changed in so many ways. I am not just talking about my shuffling gait, or inability to participate in certain activities, or the "masking" that hides all signs of emotion, but on a much deeper level. In a sense, as absurd as it may sound, Parkinson's has set me free in an emotional sense. When I realised soon after diagnosis how many patients "hide in the closet" from denial or simply fear of the unknown and what lays head of them, I knew this is where I could make a difference and stepping up to the mark, I have made it my mission to inform and educate those who know nothing about Parkinson's and to offer support to fellow sufferers in need. I also found quite quickly how the role of caregiver is one of the hardest jobs and often not acknowledged; unless you've been in these shoes, and I've played the part of caregiver to my late mother and now find myself in the position of being taken care of by my husband and daughter. I have come across many people in my generation who in similar circumstances have experienced both roles as carer and then later as patient.

This is the second year I have taken part in a programme run by the university for first year students in medical school, where they get to meet and talk with chronic patients. Lucky me, I fit into this category, but I'm more than willing to talk with these eager youngsters who will be the doctors of the future. I think this is an excellent addition to the syllabus, allowing the students personal insight from a chronic patient's perspective.

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