23/01/2014 07:40 GMT | Updated 24/03/2014 05:59 GMT

Parkinson's Keeps on Taking

There are many lessons we learn during life, some blatantly clear whilst others so subtle, it doesn't occur to us we've gained valuable knowledge and experience along the way. With the years we grow a little wiser, or at least hope to, and undeniably carry baggage for no one journeys through life with simply a carry on bag. I would say most of us, if the truth be known, carry heavy suitcases, which any airline would charge extra for being overweight. However it is the lessons we learn, some painful, others deeply profound along with our baggage, that makes us into the unique individuals we are today.

I've forgotten what pain free days feel like, and must admit a hint of envy when I see other women my age, healthy and strong, going about their lives, without the slightest appreciation of just how lucky they are. Good health is precious and often taken for granted. It's the small simple pleasures in life I miss the most. I would love to run barefoot on the beach, walk briskly, to skip up stairs two steps at a time, or to spring out of bed with energy in the mornings and move with agility and grace like I once did before Parkinson's and I became acquainted. Instead of a gift that keeps on giving, Parkinson's has it back to front and just keeps on taking. It knows not when to stop, and like a thief who's found a good stash, keeps coming back for more. Parkinson's disease has already taken far too much, and quite frankly the future scares the hell out of me.

My worst nightmare is becoming a burden to my family, which I'm sure is in the back of many people's minds. No one wants to put loved ones through such difficulties and heartbreak. Why is it the people we love the most seem to be the ones who end up suffering? I am painfully aware my family, despite their smiles and good humour, encounter strains and difficulties due to my ill health. I wish I could magically be cured overnight, wake in the morning healthy and strong, and be everything my darling husband and daughter rightly deserve from a capable loving wife and mother. In reality, Gaucher and Parkinson's aren't going anywhere any-time soon, and follow me like a dark hideous shadow. However, I wont give in and continue to fight by making the best out of a bad situation with a proactive positive attitude and a dry British sense of humour.

When I do something, I give it my all putting in 100% effort. So it has been with my campaign, offering support to fellow sufferers and bringing greater awareness to the general public. I had to slow things down recently due to my health deteriorating, having got quite carried away with advocating both diseases. I could no longer keep up the pace I'd been running at for the past few years.

Having spent so much time and effort in writing and campaigning, I was honoured to receive the IndiPENdents Mark of Excellence Award in July, 2013. The three peer-evaluators found my book "Parkinson's, shaken, not stirred" well written and well edited, which won me the award of The indiePENdents Seal of Good Writing. I'm no Shakespeare, nor a budding J.K. Rowling, but from what The IndiPENents wrote, they had a clear understanding of Parkinson's, and I quote:

"It isn't every day that a woman with such a debilitating disease as Parkinson's writes a Huffington Post blog or an award winning book. Parkinson's sufferers by definition are depressed and unable to function sufficiently to write a document of any kind. How much more difficult for one with Parkinson's to write verse? Elaine Benton achieved this feat. From line one she captivates the reader. The challenges of Parkinson's are frequently explored, but with good humour, and the poems are not a litany of woe. The verses of Elaine Benton are not smooth but need no apologies for it. They are written in concert with her constant shaking and stiffness, a reflection of her nature, as it were. It makes for great poetry."

I was therefore thrilled to recently learn I have been nominated for the Health Activist Hero Award in the Third Annual WEGO Health Activist Awards and thank all those who have endorsed me. Health activists around the world inspire us every day and to recognize their accomplishments and contributions, The Health Activist Awards honour the leaders who make a real difference in how we think about healthcare and living well.

Parkinson's may keep on taking, but I will continue to give for as long as I am able.