Gaucher Disease

Internet Support Groups

Elaine Benton | Posted 17.04.2014 | UK Lifestyle
Elaine Benton

Before Internet, e-mails, mobile phones, the technology we enjoy today, and now take for granted, it was far harder to find the latest information, meet with others in the same situation and impossible to correspond with fellow sufferers half way round the world. If there was a support group located near to one's home, then it was a stroke of luck.

Understanding Chronic Pain

Elaine Benton | Posted 27.03.2014 | UK Lifestyle
Elaine Benton

In many ways I depend on people who are not sick. I need you to visit me when I'm too sick to go out. Sometimes I need help with shopping, cooking, cleaning, or taken to the doctor. You are my link to normalcy and help me to keep in touch with parts of life I miss.

Rare Disease Group Shapes It's Own Destiny

Elaine Benton | Posted 20.03.2014 | UK Lifestyle
Elaine Benton

When you have a rare disease, discovering a fellow sufferer, is almost like finding a long lost relative for you feel an immediate connection as if you are hereditary linked in some way.

To Sleep Perchance to Dream

Elaine Benton | Posted 13.03.2014 | UK Lifestyle
Elaine Benton

Anyone suffering insomnia, I'm sure can relate to waking up at all times of the night, not quite certain if to leave the warmth of their bed, or remain tossing and turning relentlessly, in the hope of finally falling asleep.

Rare Disease Awareness Day 2014

Elaine Benton | Posted 27.02.2014 | UK Lifestyle
Elaine Benton

The last day of February each year has been designated as Rare Disease Awareness Day, a world wide effort to bring greater awareness to the general public, governments, health policy makers, along with research and development.

Winning the Fight

Elaine Benton | Posted 20.02.2014 | UK Lifestyle
Elaine Benton

Some friends stick around for years through thick and thin, and others appear in our lives for just a season. You may not see a friend for a long time, yet when together, you immediately pick up from where you left off, as if no time has passed at all.

Money Doesn't Buy Health or Happiness

Elaine Benton | Posted 07.04.2014 | UK Lifestyle
Elaine Benton

So does money buy health and happiness? I'm afraid to some degree, it does. It buys security, physical comfort, eases worries and anxieties, which in of itself brings calm and allows happiness to reign in a household.

Parkinson's Waits For No Man

Elaine Benton | Posted 31.03.2014 | UK Lifestyle
Elaine Benton

Parkinson's waits for no man, and certainly not this woman, as I can't type at the same speed as my thoughts any more, and if I don't get them down straight away, they are lost. Writing with pen and paper is of no help at all, in fact it makes matters even worse.

Parkinson's Keeps on Taking

Elaine Benton | Posted 24.03.2014 | UK Lifestyle
Elaine Benton

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.

How Are You?

Elaine Benton | Posted 17.03.2014 | UK Lifestyle
Elaine Benton

When people ask me "How are you?" I have to think twice, not because I don't know, but often am not sure what they want to hear. Some ask out of common courtesy, simply being polite, but would rather I answer "I'm fine thank you" than hear a long account; perish the thought of hearing the truth and understanding the full picture of living with chronic disease.

Mirror Mirror on the Wall

Elaine Benton | Posted 10.03.2014 | UK Lifestyle
Elaine Benton

Every morning as I clean my teeth, and the strange reflection of someone I once knew stares back at me with an expressionless face, I wish I had a magic mirror that would show me what I'd like to see. Unfortunately the mirror does not lie, as I look at myself I can hardly believe it's me. Our bathroom scales annoyingly also tell me the truth...

Life Is Not Black & White

Elaine Benton | Posted 03.03.2014 | UK Lifestyle
Elaine Benton

Born with Gaucher disease and battling for the last eight years with Parkinson's, I became an advocate for both diseases. It may sound odd, but my ill health has taken me on a tremendous journey, one which I would never have dreamt of a few years back.

The Sound of Music

Elaine Benton | Posted 25.02.2014 | UK Lifestyle
Elaine Benton

As ridiculous as this sounds, we started dancing around the lounge and kitchen, to the loud music and our uninhibited cavorting instantly lightened our mood. Moving to music is not only fun but highly beneficial, freeing up those stiff rigid joints and an excellent cardiovascular workout.

Falling on Deaf Ears

Elaine Benton | Posted 17.02.2014 | UK Lifestyle
Elaine Benton

I'm not sure how I've kept running at such a pace, being an advocate for both Gaucher disease and Parkinson's and it's hardly surprising my batteries are on an all time low. I am driven with unstoppable passion and commitment.

In the Midst of the Night

Elaine Benton | Posted 10.02.2014 | UK Lifestyle
Elaine Benton

Insomnia is most commonly thought of as both a medical sign and a symptom that can accompany many diverse illnesses, therefore the number of people suffering sleepless nights around the world is unimaginable. Insomnia is one of the annoying effects, those living with Parkinson's have to endure.

Losing Confidence

Elaine Benton | Posted 03.02.2014 | UK Lifestyle
Elaine Benton

As Parkinson's (or any serious illness) progresses, it's easy to lose one's self confidence. When I was first diagnosed I immediately came across several people who had been living with Parkinson's for some years and therefore had already experienced many of the stages and symptoms that occur as the disease advances.

These Shoes Were Made for Walking

Elaine Benton | Posted 27.01.2014 | UK Lifestyle
Elaine Benton

How the shoe industry must love us ladies, who generally own far more shoes than we need, and in a heartbeat will fall in love with a pair that are simply calling out our name. Due to my health, I had to unfortunately stop wearing high heeled shoes long ago.

On a Scale of One - 10

Elaine Benton | Posted 25.01.2014 | UK Lifestyle
Elaine Benton

How many times have you been asked by a doctor; "On a scale of 1 - 10, how bad is the pain?" Unfortunately I've been asked this question too many times to count. I realise a doctor needs some indication, a clue as to what he/she is dealing with, but I wonder how helpful this unreliable approach really is.

Educating Rita

Elaine Benton | Posted 23.01.2014 | UK Lifestyle
Elaine Benton

Getting my message out to the general public is not easy. I cannot do this without your help, so ask you to join my campaign in educating those like Rita who do not know, and help spread further awareness.

Parkinson's Problems We Don't Talk About

Elaine Benton | Posted 23.01.2014 | UK Lifestyle
Elaine Benton

The stereotypic symptom of someone with Parkinson's is they merely shake. With today's wide array of medications, the shaking can be brought under control to some degree, but there are many more rotten symptoms.

Think Big - Think Loud

Elaine Benton | Posted 23.01.2014 | UK Lifestyle
Elaine Benton

Despite my ill-health, I have great clarity, my mind is sharp and most importantly, I've maintained a sense of humour which gets me through each day. The hellish thought of being unable to speak, imprisoned by Parkinson's petrifying cloak of silence, terrifies me.

Weathering Parkinson's

Elaine Benton | Posted 23.01.2014 | UK Lifestyle
Elaine Benton

Parkinson's disease is pretty much like the weather; unpredictable like a force of mother nature with a will of its own, that we have no control over. Symptoms and side effects are inconsistent as they vary from patient to patient. There are good days and bad days.

Shake, Tremor and Cook

Elaine Benton | Posted 23.01.2014 | UK Lifestyle
Elaine Benton

I have always loved to cook, and am passionate about using healthy fresh ingredients, serving food in an appetising manner, everything being home made, you can almost taste the love in every bite. Parkinson's slows me down considerably and I'm no longer able to whip up a quick meal as I once did.

Stepping Out

Elaine Benton | Posted 23.01.2014 | UK Lifestyle
Elaine Benton

For any Parkinson's patient, stepping out, can be a stressful experience, even when invited to a happy occasion or event. Most healthy people don't realise what it takes for someone suffering any chronic condition to go out and socialise.

What Does Love Feel Like?

Elaine Benton | Posted 25.11.2013 | UK Lifestyle
Elaine Benton

"What does love feel like?" Although a very pertinent question, I found it hard to put into words, so that a six year old could understand. How could such a young child grasp the concept of love?