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, March 2, 2018

My Greatest Fear

 We all have our strengths and weaknesses, foibles and fears. I don’t like being in confined spaces such as an MRI machine, and you’d never catch me paragliding or bungee jumping. Snakes and slugs come high up on my list, but without doubt my greatest fear of all is being unable to communicate.

Thanks to Parkinson’s I was hospitalised several times during 2017. Trapped in a body that no longer responds to Parkinson medication, unable to swallow or speak, no doctor or nurse could possibly ascertain if my cognitive skills remained intact. Add into the equation that any anxiety or stress greatly exacerbate the disease – and hey presto, my greatest fear of not being able to communicate in any form was realised.

As the doctors made their morning rounds, I lay there in my hospital bed like some distorted forsaken wax statue from the Chamber of Horrors at Madame Tussauds. I couldn’t move, and my unblinking eyes were transfixed on a ceiling tile above my head.
The morning doctor’s rounds were not at the same time each day and not knowing when they would appear made it very difficult for my husband to be there with me. Over the years, my husband has taken an extraordinary amount of time off work to care for me. Due to the severity of the “off” I was experiencing, I couldn’t even use my mobile phone to call a family member or friend to step in as an advocate to speak on my behalf.

Later in the day when I was “on”, I wrote down all the questions I had wanted to ask the doctor, along with pertinent details he didn’t know. Being a girl guide at heart, with just a touch of OCD for good measure, I am very methodical and super organized. I do my best to be prepared for every eventuality. The following morning, I was again “off” as the doctors made their rounds, but I managed to avert my eyes away from the captivating ceiling tile and locked eyes with the doctors’ and he saw my notepad clutched tightly in my grasp. He read my questions and comments out loud to his entourage. Through this limited form of communication, at least it was now established that I had all my marbles!

If you ever find yourself in the situation of being unable to communicate, make sure you have an advocate - someone to speak on your behalf who has your best interests at heart. I can’t stress enough how important this is.

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