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.

Monday, June 4, 2012

My Presentation

This morning we arrived early at the Italian Institute of Health and at 09:00 entered and registered. We were warmly welcomed by the organisers with whom I have been in e-mail contact with for several weeks now, so it was nice putting faces to the names. Wearing our tags we were ushered to reserved seats in the front row as slowly the lecture hall filled up. We were given simultaneous translation headsets, although much of the Congress was in English. It was a pleasure to finally meet Prof. Brian Hurwitz, and sitting next to him, I soon discovered what a charming man he is. Hearing his opening lecture, there was a connection between his talk and mine as he spoke about Dr. James Parkinson's powers of observation which lead him to writing an Essay on the Shaking Palsy in 1817 which was later named (Parkinson's disease). It was then my turn to talk, and without hesitation or feeling nervous, I went up onto the stage, and spoke for 15 minutes. Unlike most speakers there today, I didn't read my presentation, for I particularly wanted to speak straight from my heart, which I believe captured the audience's attention. Right at the end of my 15 minutes I read a shorten version of the very last poem in my book "This isn't the end, there's always tomorrow". There was a burst of applause, and then five extra minutes, where several people asked questions. During the morning break, and at the lunch break it was a great opportunity to mingle with all the other guests, who were mostly doctors, professors, academics working in the medical field, and a few patients representing various diseases. I was there fundamentally to represent Gaucher disease, a rare disease, although naturally I spoke about Parkinson's too as this is part of my story and what prompted me to write my book of poems. We are now back in the hotel and thought I would let you all know that it went very well indeed. It has been a long day and I am very tired, but extremely happy and satisfied at how successful today was. This congress was tailor made for me; Narrative Medicine and Rare Diseases - to narrate by telling a story is one of the things I do best, and I certainly qualify for the rare disease part! A room full of prominent people in the medical field today got to hear about Gaucher and Parkinson's disease - mission accomplished!


  1. Knowing how charming you are Elaine, they were probably all captivated - both by your personality and the warm, honest way you have of talking about heavy stuff.

    I am so proud of you. Mission accomplished? Maybe, but, until the next time.


    1. What an amazing experience this was for you, Elaine; the culmination of so many trials and tribulations! Did you know that a special group of people were smiling down and cheering you on? It's proof that you have many unrealized, untapped facets to your whole being! Kol ha-ka'vod! K

  2. Fantastic Elaine you are the Man or should I say woman,it really sounds as if you did your thing well, and I am happy for you.

  3. So proud of you and happy for you