Gaucher Disease

Leaving My Mark

Elaine Benton | Posted 27.08.2015 | UK Lifestyle
Elaine Benton

Making a good first impression and leaving your mark is important, but sometimes circumstances dictate an outcome different from what you had hoped for. A particular incident that happened to me a number of years ago comes to mind. I don't think I left the desired impression, but I'll let you be the judge of that...

First Things First!

Elaine Benton | Posted 13.08.2015 | UK Lifestyle
Elaine Benton

There are certain wonderful memories that stick firmly in my mind and one particular occasion always makes me smile. Some years ago, my parents-in-law were staying with us during a particularly wet winter.

You're Never Fully Dressed Without a Smile

Elaine Benton | Posted 09.07.2015 | UK Lifestyle
Elaine Benton

Although I'm highly organised and like being prepared for any eventuality, I must confess of late, living with Gaucher and Parkinson's, not to mention the new four legged addition to our family, it's a job staying on top of things.

Travelling With Gaucher and Parkinson's

Elaine Benton | Posted 25.06.2015 | UK Lifestyle
Elaine Benton

My husband has become highly adept in pushing me in my wheelchair whilst manoeuvring a large case on wheels at the same time - impressively even up and down steep inclines. This requires not only strength but the ability to steer avoiding any oncoming passengers and obstacles.

Life Is Looking Rosie!

Elaine Benton | Posted 11.06.2015 | UK Lifestyle
Elaine Benton

We have our work cut out for us working together with a professional trainer, and the next few months are not going to be easy, but in the long term we will end up with a well-trained companion/assistance dog who will hopefully enrich our lives, give me better quality of life and help me get through each day.

Who Turned Up the Heat?

Elaine Benton | Posted 04.06.2015 | UK Lifestyle
Elaine Benton

Who would have thought it possible to turn into a human volcano? I seem to defy the laws of nature; Mount Vesuvius eat your heart out! I have become a human heater, and whilst my poor husband who is nightly tormented by my malfunctioning internal thermostat, he kindly never complains.

Who Becomes a Caregiver?

Elaine Benton | Posted 29.05.2015 | UK Lifestyle
Elaine Benton

My mother was diagnosed with vascular dementia and I was suddenly cast into the role of caregiver. The deterioration was far more advanced than I had first imagined and I witnessed this cruel disease as it left destruction in its wake.

Caring for the Carer

Elaine Benton | Posted 21.05.2015 | UK Lifestyle
Elaine Benton

As tough as it is for a patient to receive and come to terms with a new diagnosis, it is equally traumatic on the spouse/partner, who without any prior warning or consultation, is unceremoniously thrown into the role of caregiver. Many pick up this mantle without hesitation, out of loyalty, devotion and love, take on this arduous task.

Bottoms Up!

Elaine Benton | Posted 13.05.2015 | UK Lifestyle
Elaine Benton

I confess, at a loss what to do, throwing caution to the wind, I took a shot of vodka, which as you've probably guessed, did not get rid of the Parkinson symptoms. It did however relax me to a degree thereby making the situation a little more bearable with no adverse effect.

I See You!

Elaine Benton | Posted 07.05.2015 | UK Lifestyle
Elaine Benton

The things people do when they assume no one is watching can be heart-warming, amusing, but occasionally just down right astonishing. I've often wondered what makes some men feel they can't be seen in the car.

A Friend Till the End

Elaine Benton | Posted 29.06.2015 | UK Lifestyle
Elaine Benton

Having a much-loved pet put down, is one of life's unpleasant responsibilities when owning a dog. Saving an animal from unnecessary suffering, when nothing else can be done, we sometimes have to make the difficult decision, knowing it is the kind and humane thing to do.

Was It Something I Said?

Elaine Benton | Posted 27.05.2015 | UK Lifestyle
Elaine Benton

When first diagnosed, there is a flurry of shock and interest from those you know, but slowly as they realise this is a long term disease requiring dedication, their sympathy wanes. Friends, and bizarrely, some family too, have mysteriously vanished into thin air.

Presenting Gaucher and Parkinson's

Elaine Benton | Posted 11.05.2015 | UK Lifestyle
Elaine Benton

The DNA lottery has dealt me the booby prize of receiving two diseases, but ill health doesn't stop me living life to the best of my ability. "The show must go on", as they would say in the theatre.

Women Are Definitely From Venus

Elaine Benton | Posted 04.05.2015 | UK Lifestyle
Elaine Benton

Women are used to bearing it all, talking candidly and honestly on every topic you could possibly think of. In a safe environment, we are willing and able to share our deepest thoughts and bear our soul without fear of judgement or incrimination.

Rare Disease Awareness Day - Gaucher Disease

Elaine Benton | Posted 25.04.2015 | UK Lifestyle
Elaine Benton

I wear a smile as my shield, maintain a sense of humour for a coat of armour, and a strong fighting spirit is my sword. This is how I battle each day with two diseases; one rare and one extremely common. My life is no picnic, but one thing for sure, it's not dull!

There's No Room at the Inn!

Elaine Benton | Posted 21.02.2015 | UK Lifestyle
Elaine Benton

As adults we often view loneliness as a sign of failure, and a successful person is surrounded by a multitude of friends. In reality, this is not the case, for generally one has only a small handful of what can be considered loyal good friends, the others are merely acquaintances.

Fighting For Your Rights

Elaine Benton | Posted 16.02.2015 | UK Lifestyle
Elaine Benton

Different countries around the world with diverse health schemes, adhere to set rules and regulations. Learning how the system works where you live, and finding out what you're entitled to, are just the first steps, in what feels like a voyage into uncharted waters.

Thank You Michael McIntyre

Elaine Benton | Posted 09.02.2015 | UK Lifestyle
Elaine Benton

Living with a long term illness can be awfully hard sometimes, and we all need a good laugh now and then. Comedy takes your mind off a bad situation, even if just for a short time, which one could say is the true form of "comic relief".

The Night Before

Elaine Benton | Posted 02.02.2015 | UK Lifestyle
Elaine Benton

The night before surgery is always strange, sleeping in a hospital bed waiting to get tomorrow over and done with, so the recovery process can begin. Thoughts of home and getting back to some form of normality fill my sleepy head.

The Magic of Chicken Soup

Elaine Benton | Posted 26.01.2015 | UK Lifestyle
Elaine Benton

Entering the winter months, night closes in early, as darkness envelops us with a chill in the air. There is nothing more welcoming than arriving home, greeted by the wonderful aroma of a steaming pot of soup on the stove.

Maintaining Friendships

Elaine Benton | Posted 19.01.2015 | UK Lifestyle
Elaine Benton

Generally people don't want to hang around anyone chronically ill, and I can't say I blame them. I do understand, for someone in a poor state of health has limitations when it comes to socializing, which admittedly causes difficulty in maintaining friendships. Once diagnosed with a degenerative disease, life is never quite the same again.

It's Not All Glamour!

Elaine Benton | Posted 12.01.2015 | UK Lifestyle
Elaine Benton

Hearing how doctors fly around the world attending and giving lectures at various conferences may sound glamorous, but having just spoken at such a gathering in Barcelona, giving a short talk from the patient's perspective, I can assure you, this is far from the case.

Never Give Up Hope

Elaine Benton | Posted 05.01.2015 | UK Lifestyle
Elaine Benton

Are you familiar with the 'missing sock' syndrome, which continues to be baffle me? I'm far from alone experiencing this strange phenomena, as it probably occurs in most households around the world. For those of you who haven't a clue what I'm talking about and are puzzled, shaking your heads; let me explain.

Body and Soul

Elaine Benton | Posted 22.12.2014 | UK Lifestyle
Elaine Benton

October being 'Gaucher Awareness Month', I began to ask myself some questions. Why do certain patients have mild symptoms and others suffer severely? Why do some patients recover from additional ailments quicker than others?

Not Tonight Josephine

Elaine Benton | Posted 15.12.2014 | UK Lifestyle
Elaine Benton

I am not a doctor, but merely a patient with a lot of experience and a desire to share information offering support to others in similar circumstances. I write about every aspect of living with an on-going long term illness. No subject is taboo or off limits.