Gaucher Disease

Not Tonight Josephine

Elaine Benton | Posted 15.10.2014 | 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.

Gaucher - A Rare Disease

Elaine Benton | Posted 03.10.2014 | UK Lifestyle
Elaine Benton

Born with Gaucher disease, I was introduced to the word "rare" at the tender age of five (no pun intended!), as patients with any rare disease will no doubt be able to relate. Once diagnosed with a rare disorder, life is never quite the same again. It's like having a permanent post-it stuck to your forehead with the words R A R E D I S E A S E written in florescent colours.

What Matters Most

Elaine Benton | Posted 25.09.2014 | UK Lifestyle
Elaine Benton

Most of us living with Parkinson's disease are on a cocktail of pills we ritually take each day. We can try to help maintain the dopamine levels to some degree by eating the right foods. A well balanced diet alone cannot of course replace Parkinson's medications, but ensures they work at an optimal level.

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 13.10.2014 | 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 06.10.2014 | 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.