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, May 30, 2012

Oral Presentation

Thank you everyone for your wonderful warm words of support and good wishes upon the exciting news of my Abstract being accepted by the First International Congress - Narrative Medicine and Rare Diseases. As you know I have been asked to give an oral presentation on 4th June 2012, which is a great honour and I am thrilled. The keynote speaker is Brian Hurwitz from the School of Arts & Humanities at King’s College, in London and I look forward to meeting him. I will be the only patient representing Gaucher disease who is giving an oral presentation so feel it is an important opportunity to bring the care of chronic diseases to the forefront from the patient's point of view. Tomorrow we travel to Italy; our bags are packed and my presentation is ready. I have been given good advice from seasoned speakers and feel well prepared. I’m not looking forward to the journey however, as like a bottle of good Merlot wine, I do not travel well.  During the flight, I suffer from Gaucher bone pains due to the cabin pressure, and the Parkinson’s makes it very difficult and uncomfortable to sit long in an airline seat. It usually takes me a full day or longer to recover from a journey, but it’s worth it. I wouldn't miss this opportunity for the world.

1 comment:

  1. My dear Elaine,

    You are going to be the best Gaucher's speaker ever. I know that your speech, albeit short, will be a good one as I have followed your writing for some time now and what you say is worth listening to. You will not only manage the flight, you will be a star.

    Holding thumbs for you.
    Jill Sadowsky