About me

PROFILE:
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, October 17, 2014

Awareness


Sometimes it’s difficult for my husband to get a word in edge-ways. I always insist that being a chatterbox is inherited, and therefore can’t help it (well that’s my excuse and I’m sticking to it!) I thought I’d give my husband a chance to have his say today, so I will now hand over the keyboard to my better half:

OK October has arrived, so that means its Gaucher Awareness Month. Personally I became aware of Gaucher many years ago, when Elaine and I were dating and getting serious, she said to me one day “I’ve got Gaucher disease”. At that point I think I became wary, but after listening to Elaine’s explanation, I asked a friend of mine who is a doctor and I decided to read up on what it meant to live with Gaucher and what if any implications it would have on our future relationship. Well the more I found out the more I realized there was nothing so scary being “wary” and informed became “being aware”.



Becoming aware of a new subject is simply learning about something that previously was unknown. So let’s do everything we can during October to educate people so they understand what Gaucher disease is and how it manifests itself in different people. Gaucher disease is not something to be afraid of; the more aware people are, the more questions and research will be done to help sufferers. Thanks, let’s spread the word……

Did Napoleon say: “Not tonight Josephine”, or was it a Gaucher or Parkinson’s patient? Take a look at my article in The Huffington Post if you're not sure!

1 comment:

  1. Great to hear from Brian on this. I can remember the first time I told my now husband about Gaucher. We had barely started dating but I thought I should warn him about my protruding port-a-cath and of course this seemed to require introducing Gaucher. I suspect it was a bit too much information for a second date but I was really the only anxious one. He just sort of nodded OK and didn't seem phased by it. Despite seeming so awkward at the time, it obviously worked as we are still together over 10 years later =)
    Thanks for sharing your perspectives on such matters.

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