Chronic Illness

Atos to Leave WCA Contract Early

Stef Benstead | Posted 28.03.2014 | UK Politics
Stef Benstead

The government should take this opportunity to think very carefully about whether the WCA is the right assessment to continue with. At the very least they shouldn't bind the next government to lengthy contracts for delivering WCAs if that will hinder the opportunity to give the WCA the massive overhaul, even total replacement, that it very much needs.

Medical Cannabis

Elaine Benton | Posted 06.03.2014 | UK Lifestyle
Elaine Benton

I very much hope there will be a change in policy for the countries where medical cannabis is still illegal so that people suffering chronic illness can obtain the relief they rightly deserve. Why should chronically ill people suffer in silence, when there may be a solution at hand?

Rare Diseases Day: 16 Things You Know When Living With a Chronic Illness (or Three) In Your 20s

Natasha Lipman | Posted 28.02.2014 | UK Lifestyle
Natasha Lipman

So, today, on Rare Disease Day, I'd like to take the opportunity to share some quick things that millennials (ugh) living through their teens and twenties with chronic illnesses will know. I hope that this will serve to help people be more understanding and aware of what they can do to support their friends and loved ones who fight every day for their health.

Love Me, Love My Dog

Elaine Benton | Posted 14.04.2014 | UK Lifestyle
Elaine Benton

My dog has a face only a mother could love, she incessantly drools, snores loudly and smells (so I've been told). Due to Parkinson's I have no sense of smell, so it doesn't bother me! We have become inseparable and together 24/7 for over eight years; family and friends now know and accept, "Love me, love my dog"!

On Working With Chronic Illness(es)

Natasha Lipman | Posted 26.03.2014 | UK Lifestyle
Natasha Lipman

Three chronic illnesses that left me bed bound, feeling more ill than I had ever done in my life, and more and more depressed (which certainly didn't help the situation). I spent hours trawling the internet and asking people online how they were able to live 'normal' lives. That's all I wanted. I had had to give up jobs that I loved...

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.

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.

The Diary of a Hermit : IBS

Sophie Eggleton | Posted 10.02.2014 | UK Lifestyle
Sophie Eggleton

For the last ten years the structure of my day has been dictated by my busy bowels. I've always had a speedy metabolism, but these days my innards conduct themselves like an Olympic bobsleigh team. My daily schedule is controlled by my petulant paunch, and it's become necessary to assess every journey/task and appoint a risk factor.

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.

A Future for Health-Activism

Rupert Whitaker | Posted 30.01.2014 | UK Lifestyle
Rupert Whitaker

In the fray, be aware and protect your biggest assets, which are integrity, transparency, authenticity, courage, cohesion, creativity, an acting on social values, ethical independence, a willingness to learn, and a lack of shame.

Faith? Please Cure Us of This Myth

Mik Scarlet | Posted 23.01.2014 | UK Lifestyle
Mik Scarlet

One Sunday one of our merry band was having his regular bedside Mass with his priest and his Mum, when the priest asked us all to join with them. When we all refused the way the priest replied to us has stuck with me throughout my life. "Well if you don't believe then you deserve to be sick. God is punishing you all for your lack of faith".

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.

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.

Gaucher Awareness Month

Elaine Benton | Posted 02.12.2013 | UK Lifestyle
Elaine Benton

Having a rare disease may sound special, but believe me, it's not. Growing up isolated, I never met another Gaucher patient and had no form of support in my youth.

Defining Symptoms

Elaine Benton | Posted 09.09.2013 | UK Lifestyle
Elaine Benton

Living with two diseases, I wear two hats, so to speak. Although Gaucher is a rare genetic condition and Parkinson's is a relatively common neurological disease, they both share a few of the same symptoms which overlap.

The English patient

Elaine Benton | Posted 26.08.2013 | UK Lifestyle
Elaine Benton

Patients who suffer any chronic, degenerative condition, should be seen on a regular basis by the same doctor, thus ensuring an on-going picture whereby the best care can be given. I think it must be incredibly difficult to continually show compassion towards a patient, whilst for self preservation keep a certain distance not allowing emotions to engulf and cloud the issue.

Bolting for the Door

Elaine Benton | Posted 19.08.2013 | UK Lifestyle
Elaine Benton

Sadly many spouses or partners faced suddenly with the realisation that their loved one has been diagnosed with Parkinson's, bolt for the door. Unfortunately statistics show that women are more likely to stick around due to our maternal nurturing instincts. Sorry guys, no disrespect meant to the male population, this is simply fact.

Ehlers-Danlos Syndrome: My Invisible Illness

Natasha Lipman | Posted 30.07.2013 | UK Lifestyle
Natasha Lipman

"EDS is considered a rare disease...and it is incredibly discouraging when no one has ever heard of it, when you have to spell it for your doctor and watch him Google it to find out how to treat you, when no one you know has it, and you are forever the weird one. It makes for a very challenging, lonely journey."

Medical Tests & Examinations

Elaine Benton | Posted 29.07.2013 | UK Lifestyle
Elaine Benton

A 'stress test', always makes me smile, as I have visions of a nurse bringing in the tax inspector or one's bank manager, a sort of Spanish Inquisition Monty Python style, interrogating the patient which is bound to heighten anyone's stress levels.

No Bucket List for Me

Elaine Benton | Posted 15.07.2013 | UK Lifestyle
Elaine Benton

So although like most people, I have a "bucket list" I decided being optimistic at heart, I would need to call my wish list something else that was more appropriate, and so I have a "Pink List". Why a "Pink List" you may well ask? Well if you are sitting comfortably then I'll tell you why pink became significant to me.

Tips & Ideas to Assist Disabled Persons

Elaine Benton | Posted 08.07.2013 | UK Lifestyle
Elaine Benton

There are many simple ideas and tips that I have picked up along the way from fellow sufferers, or have discovered by trial and error at home, and I'd like to share some of these with you. Anything that can improve your quality of life and maintain your independence to some degree has to be a good thing.

Sexuality and Disability

Elaine Benton | Posted 03.07.2013 | UK Lifestyle
Elaine Benton

A person suffering from a chronic disease or some form of disability, needs intimacy with their spouse or partner as much as anyone else. Being intimate brings a closeness to a couple and is a necessary part of a healthy relationship. Many patients, too embarrassed to talk about these matters, can end up suffering from a lack of affection and tenderness which is essential to us all.

Financial Burden of Ill Health

Elaine Benton | Posted 25.06.2013 | UK Lifestyle
Elaine Benton

Only disabled and chronically ill persons along with their families, know and understand first hand, how difficult life can be. Financial burden is an issue not often mentioned, since no one wants to admit openly the hardship that frequently goes hand in hand when a person is unable to work due to health reasons.