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, April 24, 2015

Parkinson Poetry


An inspirational story of a friend who has Gaucher disease yet able to run marathons, is the topic of my article this week in The Huffington Post.

A fellow Parkinson’s patient has written some marvellous poetry, and willing to share with you, here is a portion of one of Peter Middleton’s poems entitled “Tribulations”.

Neural receptors are losing their way,
Parkinson’s people are having to pay.
Substantia nigra falls into decay,
Black barren neurons are out on display.

Why is the Dopa-mine leaving our brain,
Express expulsion with speed of a train.
When eighty percent has dwindled away,
Developing P D is what Neuros say.

Fumble your fingers and twiddle your thumbs,
Shiver your lumbar and waggle your bums.
Fiddle with buttons and grapple with belts,
Putting your shoes on with horn surely helps.

You open the door and can’t let it go,
Froze to the handle and all in slow-mo.
Typing some letters takes such a long time,
Missing the square keys along every line.

Eating your dinner will embarrass some,
Wife cuts my meat up, but not like my mum.
Scooping my peas up with ladle or spoon,
Helps me to finish not later but soon.

These are the trials that befall us all,
Don’t let them conquer or Parkies will fall.
Grinding your molars will strengthen your mind,
Snarl like a wolf and leave pity behind.


By Peter Middleton 2008 ©

Friday, April 17, 2015

Understanding Parkinson’s

It takes courage to film one’s self and allow the world to see exactly what it’s like to live with Parkinson’s disease. One spirited young man, Kendall Lay, has done exactly this. He usually makes short films about other patients, with the intention of lifting spirits by encouraging and showing support to fellow sufferers. However with Parkinson’s Awareness Month in mind, one of his recent films portrays himself at various times of the day exhibiting Parkinson’s, leaving no doubt or confusion as to what happens when medications are working and when they are not.

This short film was not meant to dishearten anyone, but plainly shows the simple truth, in an attempt to educate and bring further awareness to the debilitating symptoms and side effects experienced by those living with Parkinson’s.


Even some members of my own family don’t understand why I appear almost unaffected at times, and on occasion can witness the harsh realities of the disease. Caught at the right time of day, my medications are working and I can function to a fair degree, but catch me in an “off” moment, when the medications have ceased to work, and you’ll hardly recognise me. Understandably confusing to those who know little or nothing about Parkinson’s, it can appear that one minute you have a debilitating disease and the next it has miraculously disappeared. 

Worrying about when I'm going to next freeze is a waste of energy, but nonetheless, it is in the back of my mind and perhaps yours too. Ever frozen in the supermarket and left wondering if anyone noticed? Have a read about my escapade this week in The Huffington Post.

Friday, April 10, 2015

Parkinson’s Awareness Day - April 11th 2015

How are you going to mark Parkinson’s Awareness Day this year? Are we doing all we can as a community? There is no room for complacency. Now is the time to stand up and be counted for if we don’t, who will speak on our behalf? You may be wondering what you can do, and how you can possibly make a difference. Every person can contribute something, and by pulling resources and joining together, with the common goal of finding a cure, this is surely our best way forward.

Speaking from the heart and personal experience, Lisa Vanderburg, who doesn’t sugar coat anything, like myself continues to campaign, and came up with a powerful slogan:


"WORK TOGETHER – CURE TOGETHER!"

The 11th April is a special day worldwide,
To help spread awareness all efforts applied.
For its “Parkinson’s Awareness Day” didn’t you know?
The community band together and jointly we show.
Help us mark this day to highlight our plight,
Let’s make some noise, and in unity we’ll fight.
We are going to “party” and spread the word,
To dispel misinformation that many have heard.

(Written by Elaine Benton ©2015)

I know your time is precious, but I would ask you to please take a moment and read my latest article in The Huffington Post. Show support by clicking on "Like" and feel free to "Share" the article. Thank you for being proactive by doing these simple actions, showing you care.

Friday, April 3, 2015

Obsessive Compulsive Sex

As I sit here in the middle of the night, with fingers poised above the keyboard, I wonder who you are that reads my blog? Are you a patient like myself? Or a caregiver? Or did you stumble across my site by accident? Whoever you are, “Welcome”. Pull up a chair and make yourself comfortable, for I’m about to discuss what most people consider an uncomfortable subject to air. I have never been one for shying away from taboo matters, and so with no further ado, let’s jump straight in!

We’ve all heard of the side effects caused by some Parkinson’s medications that result in obsessive compulsive behaviour, mainly associated with gambling, sexual activity and shopping. I have personally experienced the “shopping phenomena” which was so out of character, my family and I fortunately realised very quickly what was happening. Once a problem is identified, a solution can be sought.

I came across an article written by Marc Jaffe published in the New York Times, “Finding Equilibrium in SeesawingLibidos”, which is about the sensitive topic of sexuality and Parkinson’s disease. I applaud Marc and Karen for their courage in addressing openly a very difficult and personal topic, sharing with us all their experience, allowing important information to be brought out into the open. I am sure Marc and Karen Jaffe are far from alone.

Bringing issues like this into the open, we must cast aside any shame or stigma, so that those suffering similar side effects know these are problems that need addressing, and cannot be swept under the rug. Staying informed and receiving support from family, friends and your healthcare providers, is vital when living with any serious disease.

I think we’d all agree, there’s no place like home! Take a look at my latest article in The Huffington Post.

Friday, March 27, 2015

Home Treatment For Gaucher Disease

In contact with a dear friend who courageously endures laborious kidney dialysis three times a week, I was reminded of when I first started the “Enzyme Replacement Therapy” via infusion for Gaucher disease, almost 24 years ago. At the time I had no choice other than to visit the hospital 3 times a week. Spending a lot of time in hospital on a frequent basis, naturally feels as if one’s life has turned into one long hospital visit. This in itself takes extra emotional strain, strength both physical and emotional, not forgetting endless patience! There is nothing more exhausting than a hospital visit as an out-patient, which I’m sure my friend, and in fact anyone relying on constant hospital treatment or medication will attest.

Having a little too much experience in this particular area, I really appreciate the ability of now having home-treatment, where a nurse comes to my house once every two weeks. It is so much easier and improves my quality of life tenfold receiving treatment in the comfort of my own home. Reducing the countless long hours I used to spend in hospital, not to mention all the working days my husband would lose when he would have to take me, is a huge improvement.


Another important factor is having the same caring nurse each time, which has obvious advantages. Over the years she has become a friend and an important part of my life. A qualified nurse, seeing a patient on a regular basis, particularly when dealing with a rare disease, can prove very helpful to one’s healthcare team. A nurse with experience and a watchful eye can fulfil a valuable role between patient and doctor.

Ever wondered why people stop phoning, dropping by for a visit. How ill health affects one's social life prompted my article this week in The Huffington Post: "Was it something I said?"

Friday, March 20, 2015

Which Disease is Worse?

Attending a recent public speaking engagement, a lady wanted to know what question am I most frequently asked? I didn’t have to think very hard, as one particular question immediately sprang to mind: “Which disease disturbs you more?” My answer is: Parkinson’s is undoubtedly more bothersome for it is relentless in demanding my attention 24/7 and never gives up.

A few symptoms overlap, and are the same for both diseases, which are extreme fatigue, pain in limbs, difficulty in walking and serious constipation. These symptoms are difficult to pinpoint the origins, as to whether they are Gaucher or Parkinson’s related, or a combination of both.

However when Gaucher disease decides to take front stage, Parkinson’s has to step back and wait in the wings. Bone problems with Gaucher disease can be of a most painful and serious nature, sometimes requiring hospitalisation and even surgery in extreme cases.

Friday, March 13, 2015

Following Your Intuition

Do you listen to your body? Have you ever had a gut feeling that something is wrong? Can you trust your own judgement?  .

I strongly believe in being a responsible advocate for one’s self, and listening intuitively to one’s body. This is a fine line to tread, and should be taken very carefully. There are many factors involved; genetic disposition, environment, interactions between medications along with various other explanations. Taking all into account and carefully balanced alongside a doctor’s professional and expert advice, should mean you have all bases covered.

Giving a doctor all the facts is extremely important, for like a puzzle, if a piece is missing, it’s not easy to see clearly the entire picture. Working together, patient and doctor, open dialogue and honesty is paramount. Attending doctor’s appointments with your spouse (or someone close who really knows you), can make a huge difference if you are unable to express clearly and concisely to a doctor what you are experiencing, and he/she may have valuable insight from a different perspective.

When first diagnosed with Parkinson’s, I felt a little silly arriving for each appointment at the neurologist with my husband in tow. But now into my eighth year of living with Parkinson’s, I take everything with a pinch of salt, and so my husband accompanies me everywhere. I know if I forget to ask or report something, my husband will speak up. If I overlook anything I’m told during the short allocated time, I have a back-up memory to rely on! Apart from which my husband always keeps me well entertained with his great sense of humour whilst we sit in the waiting area, so why on earth wouldn’t I take him?

Life is no dress rehearsal, it's a live performance. Take a minute to read my latest article in The Huffington Post entitled: Presenting Gaucher and Parkinson's.