Gaucher Disease

When to Stop Driving

Elaine Benton | Posted 18.09.2014 | UK Lifestyle
Elaine Benton

I was diagnosed with Parkinson's at age 44, and at the beginning as symptoms started to appear and make themselves known to me, I paid close attention to my driving. The last thing I wanted was to be driving when I shouldn't. I had no intention of putting myself in danger, or worse still causing an accident and hurting someone I love or any innocent victim.

Don't Wait Till It's Too Late

Elaine Benton | Posted 11.09.2014 | UK Lifestyle
Elaine Benton

Most people don't think twice about having pension schemes, life insurance, money tucked away in a savings plan for a rainy day, as this is considered being smart and planning ahead. So why is there a psychological block and what is the problem in tackling one's long-term living conditions in the same manner?

Gaucher & Parkinson, Take A Hike!

Elaine Benton | Posted 04.09.2014 | UK Lifestyle
Elaine Benton

Growing up with Gaucher disease, I wasn't allowed to participate in sports at school and often felt left out, but knew my bones were weak and fragile. I frequently had bouts of unexplained chronic bone pain, so didn't need much convincing to steer clear of the sports hall and the highly spirited netball team.

Parkinson's Is No Dream - It's a Nightmare

Elaine Benton | Posted 21.08.2014 | UK Lifestyle
Elaine Benton

As morning arrived, and slowly the bedroom filled with the sun's bright rays, heralding a new day, I watched my husband as he peacefully slept next to me. My eyes followed every contour of his handsome face and listened to his steady breathing, as his chest rose and fell with each breath.

Spilling the Beans

Elaine Benton | Posted 14.08.2014 | UK Lifestyle
Elaine Benton

We have a special visitor from abroad with us at present, who is taking a much needed holiday. "Why is he special?" I hear you ask. Firstly we've know...

Herniated (Slipped) Disc

Elaine Benton | Posted 07.08.2014 | UK Lifestyle
Elaine Benton

I am typing this article in bed, on my laptop which has been precariously propped up, barely able to see the keys, I am determined to finish this piece. You may be wondering what on earth I've been up to. Sorry to disappoint you, but it doesn't take much to injure myself, and I wish I had an exciting fascinating tale to relate, but the truth of the matter is sadly quite pathetic.

International Gaucher Day

Elaine Benton | Posted 22.09.2014 | UK Lifestyle
Elaine Benton

I was born with Gaucher Type 1, which is the most common form of this genetic lysosomal storage disease, but there are in fact three types. You may not know or have heard about Type 2 and Type 3 which are rarer still. As the aim of the International Gaucher Day is to raise awareness, I would like to bring attention to Types 2 and 3 Gaucher disease, that are often overlooked.

No Sense of Direction

Elaine Benton | Posted 15.09.2014 | UK Lifestyle
Elaine Benton

I will admit many things, one of which is my inability to follow a map, and poor sense of direction. Well, if I were being totally honest, I'd confess, I have no sense of direction whatsoever. My husband will quite happily back me up on this point for I have demonstrated on many occasion, much to my shame and his amusement, getting lost even in familiar surroundings.

What Makes My Blood Boil?

Elaine Benton | Posted 07.09.2014 | UK Lifestyle
Elaine Benton

A person suffering a degenerative disease, no matter how well they cope, cannot in reality be upbeat and happy every single moment of each day. This would be impossible and an unrealistic expectation.

I Run in My Dreams

Elaine Benton | Posted 25.08.2014 | UK Lifestyle
Elaine Benton

Emma ran for herself and for "Gaucher disease" but also in my name. I was honoured and very touched when Emma told me she was running on my behalf too, and thank her for symbolically taking me along. I may not be able to run, but I was there in spirit...

Make Time Stand Still

Elaine Benton | Posted 18.08.2014 | UK Lifestyle
Elaine Benton

I would like to dedicate this article to a good friend who is battling Parkinson's and will hopefully be undergoing surgery soon. May you have a speedy recovery, resulting in an improved quality of life. This article is for you - one of the many unknown heroes, whose private story goes unsung but who inspires me with your bravery, insightful words of wisdom, a great sense of humour and wit.

Caregivers of Rare Diseases

Elaine Benton | Posted 04.08.2014 | UK Lifestyle
Elaine Benton

Being a caregiver of a loved one is far from an easy task, and is probably the last thing anyone thinks of when young and falling in love. Suddenly the life you had mapped out is abruptly thrown off route and extensive changes have to be made on an emotional and physical level.

Making Right Decisions

Elaine Benton | Posted 07.07.2014 | UK Lifestyle
Elaine Benton

If you have a life insurance policy, don't cash it in no matter what. Listen to good advice when given by your agent, for you have no way of knowing your future health status, and once diagnosed with certain diseases, insurance companies are loathe to insure a person who is considered a bad risk.

Life's Cruel Jokes

Elaine Benton | Posted 30.06.2014 | UK Lifestyle
Elaine Benton

I've been asked on occasion "How do you get Parkinson's?" Believe me, I wish I knew the answer to that million dollar question. I'm sure I wasn't the only child who was told "never sit on a public toilet seat" for fear of catching something nasty, the advice of which I took most earnestly when young.

Setting Achievable Goals

Elaine Benton | Posted 23.06.2014 | UK Lifestyle
Elaine Benton

We can all do something to make a difference, and celebrate the unique individuals we are. I am no longer afraid of embarrassing myself; Parkinson's has done a great job removing any fears of making a fool of myself.

Internet Support Groups

Elaine Benton | Posted 16.06.2014 | 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 26.05.2014 | 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 19.05.2014 | 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 12.05.2014 | 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 28.04.2014 | 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 21.04.2014 | 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.