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, May 23, 2014

Rosy Tinted Glasses

I was invited to give a talk earlier this week, to doctors who came from around the world to attend a Conference aimed at those who have patients with Gaucher disease. A connection between Gaucher and Parkinson's was made some time ago, and explained just before I began my talk. Upon waking that morning, Parkinson's, that has a will of its own, despite my fighting spirit and determination, decided to push me to the limits. I had to muster every ounce of energy to talk for 45 minutes, telling my story and explaining what its like to live with two diseases, one rare (Gaucher) and one common (Parkinson's). Like the British weather, with Parkinson's you can never be certain, knowing in advance if it's going to be a good day or bad day. I managed to get my message across, for even though I've been doing voice therapy, my voice was rather monotone and not as loud as it usually is. It was a pleasure to meet such a lovely group of doctors who made the effort to attend the conference, and who understand Gaucher disease.

I explained why there is a lemon blossom flower on the front cover of my book "Parkinson's, shaken, not stirred"; how my brother before he passed away from Gaucher and Parkinson's at the age of 63, had bought me a lemon tree which is planted in our garden. The picture of the blossom is a dedication to his memory. One of the doctors asked "why a lemon tree?" to which I replied, "when you're given lemons, make lemonade." In other words, when born with bad DNA and have serious health issues, make the best of a poor situation.

Since childhood, I've always had the ability to look at the world through imaginary rosy tinted glasses, looking at the bright side of life, seeing the glass half full, being grateful, counting my blessings and paying attention to detail, noticing things people often take for granted or miss entirely. 

I am featured in this week's blog of the indiePENdents Web site and invite you to take a look.

Life has a strange way of leading us down paths that we might never have imagined taking. People have the odd notion they are in control, when in fact, I often think, call it destiny or fate play a far larger part. I have never been more focused or determined in my life before, as I know being a health activist, an advocate for both diseases, I'm doing exactly what I am supposed to be doing with my life. Don't get me wrong; if I could magically be cured of Gaucher and Parkinson's disease tomorrow, without hesitation I would gladly wave these two unwanted guests "goodbye". I always believe everything happens for a reason - and that principle is what I cling to in rough times. Having purpose, a reason to get up each day, is something everyone needs.

Talking of getting up each day and mobility, my article this week for The Huffington Post is about the beneficial effects of music for Parkinson's patients.

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