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, October 10, 2013

And Parkinson's taketh away

Parkinson's, is debilitating and progressive. I notice the small changes as they silently creep up on me, making it painfully clear how this disease is unstable, unpredictable, and on occasion I'm knocked for six as yet another part of my life is taken away.
I have been sewing since I was five years old, and for many years made my own clothes, various things for the home and gifts for family and friends. Slowly, since being diagnosed with Parkinson's, sewing has become increasingly difficult. At one stage I realised the fine silk embroidery I used to do, was definitely a lost cause, and then quilting was added to the list. Using a sewing machine requires little dexterity for all I had to do was feed the material through under the metal foot of my trusty machine which does the work for me. But even this proved too much recently, unable to cut fabric or machine in a straight line.
I was with my husband and we were near a material shop, that beckoned me in. For someone who has always had a passion for sewing, the sight was almost like eye candy; shelves lined with beautiful brightly coloured cotton fabrics almost mesmerised me. Before I knew it, denial took over, as one particular pretty fabric caught my eye. Within a minute I had bought 2 meters of this gorgeous cotton material with the intent of making a simple garment for myself. Caught  up in my enthusiasm, it wasn't till I began my sewing project the following day, that I quickly realised I can no longer even use the sewing machine, and that my abilities of sewing have now been completely stripped from me. I fought and struggled all day, refusing to give in to what was inevitable. I was so frustrated at being unable to complete, what for me should have been a simple project, that the more I fought it, the worse things became. By evening I was in such a state, I had literally made myself ill.
Accepting one more thing I cannot do, is a hard pill to swallow, and it saddens me to have lost a hobby that gave me such enjoyment for so many years. It was with a heavy heart that I gave a dear friend who quilts the very last of my fabric and quilt batting. So the scores on the doors for today are Parkinson's = 1, Elaine = 0. But this wont keep me down for long. This ravenous disease might have stolen yet another piece of my life, but I won't let it break my spirit.

Due to October being Gaucher Awareness Month, my childhood story of growing up with a rare disease has been posted on a site "Stories from kids with rare conditions". 

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