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.

Sunday, November 17, 2013

Looking Back

When I look back over the last few years, and think of all that's happened, it is hardly surprising that my batteries are on an all time low, and I'm clutching onto what is left of me, as two chronic diseases run their course. What I've managed to achieve in being an advocate for both Gaucher disease and Parkinson's is more than I could ever have imagined possible. A healthy person would have had trouble keeping up with the pace I've been running at, but I was driven with an unstoppable passion and commitment to offer support to others in similar circumstances and to create further awareness. I have made some wonderful friends who are fellow sufferers and understand only too well my plight, but I don't know if I've succeeded in the latter, for as the old saying goes "you can lead a horse to water, but you cannot force it to drink". It was pointed out to me by a dear friend's father, and I quote:

"It is easy to see why most people know very little about Parkinson's. Most of us only seek information on what is important to us and our families. Problems caused by overload of information is one of societies current problem areas. Information without full understanding can be a dangerous thing (especially in children) When I go to my doctors surgery there are about 60 leaflets on the walls, including some information on Parkinson's. It is impossible to take all of the information in. Humans we are by necessity selective, it is one of the things that separates us from the rest."

I thank him for his honest and candid comment, and believe he has a good point. There is only so much I can do, and I think I have reached my limit. I have touched fellow sufferers, caregivers and anyone with personal interest in my writing, but I fear my words have fallen upon many deaf ears - the very ears I was hoping to reach, but can now see, despite great efforts I have failed to do so. I feel like the wind has been knocked out of my sails, and I'm adrift on an unknown course. When I undertake something, I do it with 100% dedication and put all my heart and soul into whatever the project or task is at hand. So it has been with my campaign; I don't do things by halves! But my strength and voice are failing me, it is growing increasingly difficult to type, my body is weary from battling constantly two diseases, and I now have little fight left in me. I'm not sure how much longer I can carry on this crusade, and may have to hang up the two hats I wear, advocating Gaucher disease and Parkinson's. This is not to say I am letting Gaucher and Parkinson's win, but maybe it's time to step off my soap box and take a back seat. If I am able, I will continue writing till the end of this year and then concentrate my time and energies on my husband and daughter, family and friends. 

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