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.

Friday, September 5, 2014

Gaucher & Parkinson’s Four Years Later

Tomorrow will be exactly four years since I began blogging about living with chronic disease, in particular Gaucher and Parkinson’s. When my husband first suggested the idea to me, I must confess, I didn’t even know what a blog was! Admitting I was technologically challenged would be a British understatement to say the least. However, once the concept was explained to me, and I began a daily ritual of writing, it was hard to stop. Through trial and error, the initial many questions that no doubt drove my normally calm and patient husband, up the wall, there was no stopping me. I wrote every day consistently for two years, but unfortunately due to a deterioration in my health, I had to reduce my writing at that point to once a week. So for the last two years I have continued to post a blog every Friday, along with writing once a week for The Huffington Post.

Four years is a long time, and I have learnt much along the way, Gaucher and Parkinson’s taking me on a mystery tour of my very own. Never quite sure what’s going to happen next, it’s been quite a journey, and one I have shared with you. I am on Enzyme Replacement Therapy for Gaucher which is administered once every two weeks intravenously, and this medication keeps the disease pretty much under control. I also take a cocktail of various pills to make the symptoms of Parkinson’s bearable, but unlike Gaucher, it is an aggressive degenerative disease and my condition is not what it was four years ago when I began writing a daily blog. Some patients are lucky to keep Parkinson’s at bay and live for many years with little change or deterioration, others like me, are not so lucky.

However this does not deter me; I forge ahead with strong conviction, knowing I have purpose as an advocate for both diseases. I shall continue to write and speak publicly, for these are ways I can contribute to society. Speaking for those who have no voice, educating the general public and giving doctors the opportunity of hearing a patient's perspective. I wont give up – call me obstinate, but I refuse to lose hope.

I would like to say a big thank you to Madeleine Abramson who will be cycling on 7th September in a bike ride from London to Cambridge. This is Madeleine’s third year cycling for charity and proceeds will go to support the Gaucher Association. On behalf of all Gaucher patients, thank you Madeleine for supporting us in your sponsored ride this year and helping bring awareness to this rare condition. Wishing you the best of luck Madeleine and hope the British weather holds out on the day. If anyone would like to sponsor, please go to the official "my donate" site.

If you'd like to read a little more in my article on The Huffington Post, I invite you to take a look at: "Gaucher & Parkinson's Take A Hike!

1 comment:

  1. What an accomplishment to be marking 4 years of committed blogging. That's a real feat! Thank you Elaine for all you do to raise awareness and get others onboard, like Madeleine.
    Good luck to Madeleine as well on her upcoming ride!
    -Emma Rooney