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, November 27, 2015

Loss of self-confidence

Whether this is your first time to my blog or if you are a regular reader, thank you for visiting and welcome to my world! Pull up and chair and make yourself comfortable. No doubt you are either a fellow sufferer, a caregiver or perhaps you are simply interested to learn the realities about living with Gaucher and Parkinson’s disease. I have been writing for some years now, and as time has passed, I’m in a very different situation today than when I began writing this blog in 2011.

As Parkinson’s slowly strips me of abilities that were once second nature, like a macabre strange rendition of “the dance of the seven veils”, as each one drops, a little more self-esteem vanishes into thin air. Many fellow sufferers, with more time on their hands, take delight in resuming old activities or finding new hobbies such as painting, writing or dancing which may not have presented themselves had Parkinson’s not been the cause of life changing circumstances. I think it’s fair to say that despite enjoying new hobbies and coming into contact with some pretty amazing people, which is one of the few positive things that occur as a result of living with chronic health issues, I can assure you, overall the disease takes far more than it gives.

There’s sadly not one aspect of my life that is not affected in some way and consequently, the lives of my husband and daughter are equally marked. Despite everything, we still retain a sense of humour which helps pull us through each day – for this is one thing Parkinson’s cannot steal! When you have a strong fighting spirit and a supportive network made up of caring family and friends – it really makes a huge difference.

This week I gave a talk to a group of thirty medical students about living with Gaucher and Parkinson’s disease. I hope apart from hearing a patient’s perspective about living with these two diseases, that they took with them my message of hope, and saw first-hand how one’s attitude can make all the difference in coping with chronic ill health. A positive outlook, sense of humour and good support system are essentials that I heavily rely on.     

Friday, November 20, 2015

Does Trouble Find You?

Do you ever find yourself in trouble? Or do you insist that trouble has a way of finding you? Teaching my daughter about “opposites” when she was very young, such as happy – sad, good – bad, big – little, high – low (you get the idea?) turned out to be more than I bargained for as she caught on very quickly!

When she was still at that adorable young age where a child will be thrilled in going almost anywhere with a parent, I took her to a local swimming pool. After a couple of hours playing in the water, we entered the ladies changing rooms. My daughter took delight in proudly demonstrating what she had newly learnt, and  pointed at a lady standing near us in a wet bathing costume and said emphatically “thin”. The woman smiled warmly back at my daughter who was rather pleased with herself at grasping the concept of opposites. She then pointed to a large curvaceous naked woman opposite us, and before I could stop her, in a clear voice loud enough so everyone could hear, she said “fat”! It was at this point I wanted the floor to open up and swallow me!  

Friday, November 13, 2015

Going Slow

I’ve gone from full throttle down to first gear. Keeping it low and going slow is all I can do these days. I have been fighting with every ounce of energy and pushing myself to the max. and doing more than I should, pushing my body too far, which can be counterproductive. Even my writing has slowed down – my world is becoming smaller. Here is a short poem I wrote a few days ago.

Parkinson’s mocks me, shocks me, shakes and rocks me,
It won’t leave me alone, night or day,
Parkinson’s appals me, stalls me, tricks and pulls me,
Unpredictable in every way.
Parkinson’s aggravates, irritates and infuriates me,
This is not what life should be.
Parkinson’s hounds me, astounds me, is always around me,
Torturous symptoms won’t let me free.

(Written by Elaine Benton ©2015)

Friday, November 6, 2015

Chicken soup with Attitude!

There is something undeniably wholesome and comforting in steaming hot chicken soup. Add some delicate thin noodles and you have a bowl of liquid heaven, that imbibed holds magical powers and secrets passed down from mothers to daughters through the generations. Each family has their own version that sets their soup apart from others, but the main elements remain and chicken soup is known for its soothing and comforting properties that act like a tonic.

I do little cooking now, but decided to attempt making a pot of chicken soup. Knowing how my hands often shake and lack dexterity, I don’t shake salt or spices straight into the food for fear of an enthusiastic shake too much, will render the dish inedible. Having a senior moment, or perhaps it was a Parkinson’s moment, I forgot and shook pepper straight into the bubbling pot of soup. I wasn’t quick enough and it was too late to try and scoop out some of the pepper.

When my family politely ate my chicken soup that night, it went very quiet around the table as they sipped the golden hot nectar. It was way too hot! Not in heat, but in a peppery spicy way. I apologised to them for spoiling the soup, but they were determined not to let a little pepper get in the way of them eating my chicken soup. “It’s chicken soup with attitude” my husband told me. He always has the most amazing way of looking at things, even when there seems little hope, he endeavours to find something positive in everything.

Take a look at my latest article on The Huffington Post. Wishing you all a very good weekend.

Friday, October 30, 2015

Make the most of it

“Thank you” to all who inquired, realising that something must be wrong, as I haven’t written my weekly article for The Huffington Post recently. Thankfully I'm feeling a little better and was able to write and submit a short piece entitled “Night Time Antics”. 

I’ve been suffering terrible fatigue along with worsening symptoms of Parkinson’s making it difficult to accomplish anything these days. I’ve always said the most predictable thing about Parkinson’s is its unpredictability!

I think most fellow sufferers would concur that having a bad day, for no apparent reason, makes one feel like the situation has definitely made a turn for the worse. Yet suddenly having a good day, much to one’s relief, can renew hope and give one the strength to carry on. So today is one of those much awaited GOOD DAYS! And I’m going to enjoy this feeling whilst it lasts.

Forgive me for not writing more now, but something one learns quickly when living with on-going ill health, is to make the most out of every moment. So instead of sitting here writing, I am going out with my darling husband, even if only for a couple of hours, I don’t want to waste this opportunity.

I wish you a good weekend wherever you are and whatever you are doing. I hope you too are having a good day and urge you to live in the moment and grab life with both hands. 

Friday, October 23, 2015

Becoming Forgetful

I think it’s safe to say that most of us are petrified of becoming forgetful, losing our marbles and being a burden on family. A friend told me of a lovely saying her close friend’s mother used when leaving somewhere. To ensure she had not forgotten anything, her glasses, a cardigan or some other personal item, getting up from a chair, she would turn to the chair she’d been sitting on and say “Goodbye chair”. By doing this, as silly as it may sound, it makes you take one last look, to ensure you have all your possessions with you and nothing has been forgotten.

Having spent much time in hospitals over the years, I have on occasion lost various items of clothing, including a rather worn but much loved cardigan and on another instance a fabulous jacket. It always seems to be a favourite piece of clothing that goes missing, and never an unimportant item. Why is that?

I was at the pool the other day, and as I was getting up out of the chair, I found myself saying “Goodbye chair”. I have to tell you, it works!

Friday, October 16, 2015

Gaucher Awareness

I wrote a collection of poems about growing up with Gaucher disease to hopefully help spread awareness by sharing a personal story from the patient’s perspective. Putting a face, name and a unique story to any rare disease brings attention and  sheds some light on not only what the patient goes through, but also how a family is affected and the ramifications involved suffering a rare disorder.

Please take a look at my Amazon Author’s Page and share with anyone you think may be interested.