Parkinson’s sufferers ‘face abuse’ because of symptoms

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abuse, discrimination, drunkenness, Parkinson's disease, prejudice, symptoms

Parkinson’s sufferers ‘face abuse’ because of symptoms

Parkinson’s disease sufferers are being subjected to “intolerable levels of prejudice”, a charity has warned, after it was found that two in five of those afflicted with the disease have experienced discrimination because of their symptoms.

Parkinson’s UK said that 41 per cent of sufferers say they have been discriminated against because they suffer from the disease.

And 8 per cent said they have experienced hostility or have been verbally abused in public because of symptoms of the neurological condition , according to a new poll conducted by Parkinson’s UK on 2,900 sufferers.

The degenerative disease affects 127,000 people across the UK, and symptoms can include shaking, slowness of movement and rigidity.

The research, undertaken to highlight Parkinson’s Awareness Week, also found that one in five Parkinson’s sufferers have had their symptoms mistaken for drunkenness.

And almost a quarter of sufferers admitted they avoid going out at busy times of the day because they are wary of people’s reactions to them.

Steve Ford, chief executive at Parkinson’s UK, said: “Our research confirms that far too many people with Parkinson’s are having to battle against intolerable levels of prejudice.

“Life with Parkinson’s can be challenging enough, but when that is coupled with feeling scared to even go out in public for fear of freezing in a busy queue and being tutted or stared at – as over half the people we spoke to do – life can feel incredibly cruel.

“Time and again people with Parkinson’s have to fight against the old stereotype that the condition is just a tremor. This basic misunderstanding has sentenced people with Parkinson’s to a life of hurtful comments, being refused service in shops and even being shouted at in the street all because people have mistaken their speech or movement problems – a common symptom of the condition – for drunkenness.”

Sufferer Ruth Martin, a mother of two from Holmfirth, west Yorkshire, said that since her diagnosis in 2008 she has struggled to deal with how people react to her condition.

The 41-year-old said: “I’ve experienced all sorts of discrimination since I’ve had Parkinson’s, but one incident really stands out. I was having a bad day and was waiting in a queue in a pharmacy. The man standing behind me with his wife said really loudly to her “just stand back a bit love, the woman in front has been drinking”.

“I felt like crying but even so I told him that I had Parkinson’s. The whole shop was listening and there was part of me that wanted to scream out – I felt like I couldn’t go anywhere.

“People have been very confrontational towards me, and I have even been followed round a supermarket by a security guard who obviously thought I was acting suspiciously. I just wish that if people saw others staggering or struggling that it would cross their minds to wonder if they’ve got Parkinson’s.”

Take a Glimpse Into My World

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Parkinson's disease

Take a Glimpse Into My World

I’d like to share with you a glimpse into the world of living with Parkinson’s from a patient’s perspective. Being diagnosed with any chronic degenerative disease can be a shock to the system. Accepting and digesting such news is very individual, and a process that covers a gamut of emotions.

Some hope the diagnosis is wrong or remain in denial. Many sufferers struggle with depression which is a common symptom of Parkinson’s and to be perfectly honest, who in their right mind wouldn’t feel down? Other patients decide to stand up and fight, refusing to let this disease get the upper hand. I am of the latter, have a strong fighting spirit, and decided to do something pro-active. I was diagnosed at age 44, and since then have been campaigning, my aim: offering support to fellow sufferers and caregivers whilst creating greater awareness to a disease who everyone recognises by name, yet actually know little about.

Talking to a group of young women, I asked if they’d heard of Parkinson’s, to which they all energetically nodded their heads. I then inquired if anyone could tell me what the symptoms are. A hand shot up and a lady said “shaking.” I agreed, and looked around the room for any other comments, but there were none. Needless to say I took this opportunity to enlighten the audience.

One of the first symptoms, which usually goes unnoticed as it is gradual and not disturbing, is losing one’s sense of smell, which I must confess, on the odd occasion is not altogether a bad thing! However, missing out on the smells of freshly brewed coffee, cinnamon buns, flowers or any of the hundreds of wonderful aromas is upsetting, but let’s face it, it’s not the end of the world. The symptoms that start to follow are remarkably more disturbing, such as shaking or tremors. There are several types, each as unpleasant and annoying as the next, and strange as it may sound, not everyone suffers from the same symptoms. A resting tremor, as it plainly suggests, when sitting doing nothing one’s hands or legs shake. There are also internal tremors, although not visible to anyone else, the sensation is highly unpleasant. Dystonia, which is the most disturbing for others to watch, and exhausting for the sufferer, as it’s like doing a Jane Fonda work out 24/7 (great for losing weight I might hasten to add!)

Slowness of movement (bradykinesia) is yet another delightful addition to the Parkinson’s malady. I used to be as quick as a flash, a master of ‘multi-tasking’, and thoroughly enjoyed walking everywhere. To suddenly have great difficulty in walking, a change in my gait, shuffling and dragging my left foot, I find incredibly annoying. Not to mention ‘freezing’ on occasion, where one is abruptly rooted to the spot and unable to move. This is also accompanied by a general stiffness and rigidity, particularly in the upper body and arms which no longer swing when walking. Like so many women, I love pretty shoes (pathetic I know!). Sadly long gone are the days when I would wear high heels, which now would be plainly dangerous, for another symptom is poor posture, hunched shoulders, and lack of balance. Annoyingly I’m constantly told by my ever loving family, to sit or stand up straight. As for falling, I’ve lost count of how many times I have fallen, but thankfully I haven’t caused any serious damage to the furniture, but have resulted in some rather colourful bruises.

As if this isn’t enough; insomnia, difficulty in swallowing, choking on food or one’s own saliva, loss of dexterity in fingers, stinging eyes from lack of blinking and losing one’s facial expressions. There are quite a few more symptoms as the disease progresses, but maybe you’ve heard enough for one day!

Parkinson’s, is an unwanted gate crasher, who arrived at a party without an invitation and refuses to leave. It envelopes every aspect of one’s life, just as a blanket of snow carpets everything in sight. However this blanket gives neither warmth nor comfort, but impedes one’s life every day with its many debilitating symptoms, and side effects of medications. I’m still here hidden somewhere inside this rigid slow body, my emotions not visible from behind a frozen mask that used to be a smiling face with expressive eyes. I have little strength left to keep up the fight, as Gaucher and Parkinson’s disease overpower my body. But I have a stubborn streak in me, and refuse to give in, apart from which, I have to write another article for next week’s Huffington Post, so I guess I’ll have to carry on fighting!

NHS is failing patients with neurological conditions, claims report

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brain damage, dementia, dystonia, emergency hospital admission, epilepsy, mental health issues, motor neurone disease, multiple sclerosis, neglect, neurological condition, Parkinson's disease

NHS is failing patients with neurological conditions, claims report

People with neurological conditions such as epilepsy, multiple sclerosis and Parkinson’s disease suffer “neglect” by the NHS, claims a report by an alliance of charities representing patients.

Poor care means that too many of the 8 million patients in England with a neurological problem are admitted to hospital as emergencies, experience delays in having their condition diagnosed, and receive too little information about what is wrong with them, according to the Neurological Alliance.

The alliance is a group of more than 70 charities that work with people who have suffered damage to their brain, spinal column or nerves either as a result of illness or injury. Its members also include charities representing those with motor neurone disease and rarer conditions such as dystonia.

An alliance report accuses the NHS of not taking patients with neurological conditions seriously enough, and warns that the coalition’s health reforms will do nothing to help them. “Policy levers for improving care in the new NHS landscape are not being mobilised to support improvements to neurological services.

“Five of the six key policy levers, including national outcome strategies and the commissioning outcome framework, are not currently being used to improve services for people with neurological conditions,” it claims.

This is despite neurological services taking up more than 5% of overall NHS spending, which makes them the service’s eighth largest category of spending, and the fact that one in six people are affected, it adds.

The report urged the plethora of new NHS bodies being created next April by the Health and Social Care Act to tackle “the legacy of neglect which has resulted in unacceptable variations in outcomes and higher than necessary costs”.

Inadequate and poorly co-ordinated care of such patients by GPs and other community health and social care services result in undue numbers of emergency hospital admissions, it says.

Research by the alliance uncovered what it called “a spending lottery” on neurological services by NHS primary care trusts (PCTs). While Central Lancashire PCT spends £11.37m per 100,000 of population on them, Haringey Teaching PCT in London spends just £4.31m for the same number of people.

Similarly, there is a sevenfold variation in the proportion of PCT spending on these conditions that goes on emergency care. In places such as Liverpool, Sunderland and Wandsworth in London, it is more than half. “Not only are emergency admissions distressing for patients and extremely costly for the NHS, but they are often an indication that conditions are not being well managed within primary care, community and social care services,” the alliance claims.

Arlene Wilkie, the organisation’s chief executive, said action was urgent because half a million people a year are diagnosed with a neurological condition and the number of patients with one is set to skyrocket in the next decade.

“If the NHS reforms do not address poor standards of care for people with neurological conditions, then they will fail. The government has said that managaing health reforms should be all about outcomes, but it has failed to identify the outcomes which matter to people with neurological conditions,” she said.

The charities want the Department of Health and new NHS Commissioning Board to devise indicators for quality of care and patients’ outcomes that will prompt the service to overhaul such services.

The Department of Health said that the commissioning board is already planning to drive improvements to services for those with mental health problems, dementia and neurological conditions by ensuring that some of the first strategic clinical networks set up next year cover them.

“We want NHS services to focus on what matters to people most. This will make sure that people with neurological conditions get integrated care and the support they need at the right time and in the right place,” said a spokeswoman.

“We are working closely with patient groups and health professionals to develop a new Long-Term Conditions Strategy. The NHS commissioning board is already planning to drive improvements to improve mental health services, dementia and neurological conditions,” she added.

More:

NHS warned of ‘neurology timebomb’