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, November 21, 2014

By Jove, I think he’s got it!

Having received several letters by post addressed to a lady who died a few years ago, I made the effort to go to our local post office. Catching the attention of a clerk who was plodding through piles of mail, I explained we continue to receive letters for someone who is no longer here. “No problem, madam” the clerk assured me.  Relieved to hear a simple solution, I handed the letter over to the young man, who with an air of authority pressed a large rubber stamp onto an ink pad and with a resounding thump marked the envelope. “What is the forwarding address?” he asked me. “There is no forwarding address” I replied in disbelief. “This lady has passed on.” I said with irritation, thinking I had made it plainly clear from the start. To clarify, I bluntly said “The lady is dead.” The young man stopped in his tracks, looked at me intensely for a moment and then asked, “So there is no forwarding address?” Feeling this conversation had reached a point beyond absurd, as if I were in a Monty Python sketch, I curtly replied “Unless the post office has an address for heaven, then no, there is no forwarding address!” Not amused by my dry British humour he filled in the empty space with ‘deceased’. By Jove, I thought, he’s finally got it!

Making one’s self clear and getting across a simple message can sometimes be painfully difficult. So imagine how hard it is explaining to those who do not suffer from Parkinson’s and Gaucher, or any debilitating disease, that just getting through the day is an achievement. Despite my condition I remain positive and make the best of a bad situation. Having a sense of humour and a smile on my face, is the only way I know how to live. I have to admit, that looking from a stranger’s viewpoint, my fa├žade does not give away much hint of my true condition, and only when I'm caught on a bad day, or when experiencing an “off” time due to Parkinson’s, would a person get a clue how I struggle and battle two diseases. I continue to write and tell my story, as do others in similar circumstances. Emma Rooney, an amazing young woman living with Gaucher disease is also a storyteller and an inspiration.

If you live with Parkinson's disease, you will no doubt understand the harsh realities that accompany it. This week I speak of the isolation one can feel in my article in The Huffington Post.

Friday, November 14, 2014

Love Is...

Everyone’s definition of ‘love’ maybe something slightly different and one’s capacity for love is most certainly very individual. To me, love is often shown in small acts of kindness that come so naturally, they need no prior thought for their spontaneity alone is proof they are genuine and heartfelt.


There is a particular English sweet, individual chocolates with caramel centers that come in a long roll. I still remember their clever advertising slogan from when I was a child, to show how much one loved these particular chocolates, you would consider giving your very last one to the person you loved.


Well I’d certainly give my last chocolate to my darling husband, for he was willing to sit through an old black and white movie called ‘Harvey’. This rather dated but charming film, stars James Stewart who befriends a ‘Pooka’ which takes on the shape of a white 6’3” tall rabbit. Not only did my husband sit with me to watch the entire film, but didn't even fall asleep - now that’s what I call love.

It takes great love and dedication to be a caregiver, thinking of your partner and putting their needs first. This is a job for life, and those who bravely commit show true grit for it is far from easy, and the far reaching ramifications of taking care of someone cannot to be taken lightly. Wherever I go, whether it be a doctor’s appointment or a speaking engagement, my husband accompanies me. We support and encourage each other, and make it over each hurdle that comes our way. 

This week was my 100th article that I've written for The Huffington Post, so take a look why "It's Not All Glamour".

Friday, November 7, 2014

Can I get any slower?

I did have just one speed, and that speed was super-fast. This was of course in the years BPD (Before Parkinson’s disease)! Now days it’s quite a different story and I often feel like I’m walking through glue. It takes great effort and persistence to get things done, and even achieving and completing the smallest of tasks sadly becomes a huge accomplishment.

A friend of mine, who is a fellow Parkinson’s sufferer, coined the phrase “living in the slow lane” which perfectly epitomizes how every part of our lives literally becomes smaller and slows down due to this lousy disease. Whether one likes it or not, and no matter how much one does to deter Parkinson’s python like grasp over the body, sometimes it’s just not enough to ward off the natural course of progression and deterioration.

It’s most definitely not a choice, but I’ve suddenly found myself living in the slow lane, along with my friend and no doubt millions of others around the world. To put it mildly – it kind of stinks. This is not what I envisaged at the age of 51, and my life has taken a completely different course than the one I envisaged. I’ve had enough of living in the slow lane. I want to be a shiny bright red Lamborghini, flying down the highway at top speed, but instead I am slow like an old fashioned English milk float that crawls at a snail’s pace in the early morning, making its rounds delivering pints of milk in the neighbourhood. I’m showing my age, for I don’t think these electric delivery vans even exist anymore.


Have you ever wondered why you end up with an odd sock after doing the laundry. Where does the other sock go to? Never give up hope! 

Friday, October 31, 2014

UCLA News on Gaucher & Pakinson’s

Did you ever have a day full of a series of unfortunate events making you wonder if you got out of the wrong side of bed in the morning? One positive thought in the morning, can literally change your day. If you think positive, positive things will happen. It’s the same as smiling at someone, they will inevitably smile back at you. Unfortunately yawning, is just as contagious, but nowhere near as attractive as a smile!

People often ask me how I can remain positive and continue to smile despite living with Gaucher and Parkinson’s disease. Having these two diseases is rare, and there are not too many people in the world who have Gaucher and Parkinson’s. After hearing statistics from several different sources, the actual number appears not to be clear, but it’s somewhere between 50 and 100 people. That’s a VERY small number of patients.

A connection between the two diseases was made some years ago, and research and studies have been going on ever since. Scientists at The University of California Los Angeles (UCLA) recently developed a drug for Gaucher, but instead showed promising results for treatment of Parkinson’s disease. Still in early stages of clinical trials, they have hopes this treatment will have the potential to stop Parkinson’s disease from progressing. 

Thought and planning when building a house or even a public toilet for the disabled is my topic this week in The Huffinton Post.

Friday, October 24, 2014

Well Meaning Advice

If I had a penny for every time someone has given me advice, by now I would be a very wealthy woman! Often advice comes from people with no medical training or personal experience with the disease you are suffering from. Although well-meant and with the best intentions at heart, advice like this drives me crazy. I’m sure I’m not alone, and many people suffering chronic ill health have to put up with receiving a gamut of advice, some of which is totally inappropriate and occasionally just downright dangerous.

Knowing when to filter out such advice is easy: if they don’t suffer themselves or are a caregiver of someone with the same disease as yourself, a qualified doctor or recognized support group / organization specializing in your particular illness – let their advice go in one ear and out the other. On occasion, to satisfy the person’s intentions of their goodhearted advice, I check out thoroughly, researching with the help of the Internet and sometimes conferring with a specialist in Gaucher or Parkinson’s. Some of the advice or suggestions that have been made to me over the years have been amazing (and I don’t mean in a good way!)

However I would like to mention that sending a link to a newspaper article that is pertinent to someone’s disease, with information of new discoveries, medical trials or findings, is welcomed and received in a positive light, giving a feeling of hope.

A healthy person cannot imagine what it is like to literally battle each day against the symptoms of chronic disease, and in my case I’m battling two diseases. I sometimes feel a little outnumbered, but like David and Goliath, we all know who wins!

So should you be guilty of giving unverified advice about an illness you know little or nothing about …..please think carefully before you speak!

We are nearing the end of Gaucher Awareness Month, but being aware should be continual and not restricted to merely one month a year. I have written about how traditional medicine and alternative medicine can work side by side and invite you to take a look at my article this week in The Huffington Post.

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!

Friday, October 10, 2014

Diagnosis of Gaucher Disease

Here is a poem I wrote one night, when unable to sleep. I thought it rather appropriate since October is Gaucher Awareness Month. The poem is entitled "Diagnosis" relating to Gaucher disease:

Diagnosis

Diagnosing a rare disease, is difficult a task,
Relieved to rule out cancer, you continue to ask.

Why are platelets low and haemoglobin out of whack?
Still awful diseases in one's mind lurk at the back.

A doctor cannot know every single rare disease,
Hence correct diagnosis doesn't come with ease,

If no family medical history exists to help give a clue,
Appearing you're the first with something entirely new.

It can take a long process, which is highly frustrating,
But once on the right path the doctor begins debating.

Gaucher a rare disease, passed on from mother and father,
Often affecting siblings, a sister or a brother.

Many years ago, a sternum puncture, was the only way,
Of determining Gaucher, but this is not the case today,

Now it’s a simple blood test, no pain or fear,
Will give a diagnosis that's absolutely clear.

Technology and medicine have improved by far,
With greater awareness, we intend to lift the bar.

October is Gaucher Awareness month internationally,
Together we campaign, as a worldwide family.

To bring better understanding of Gaucher, a disease that’s rare,
Help me spread the word, and show how much you care.

Written by Elaine Benton 2014©