“By uniting AI experts, scientists and clinicians the DEMON network aims to build a digital picture of dementia that will help improve future trials...
This important article refers to Parkinson Aware week whch in 2013 was in April, but we think it's relevant at any time of the year, the case studies are certainly worth reading and may strike a chord with you...........
- Four in ten people with Parkinson’s experience discrimination because of their condition
- Over half feel uncomfortable or nervous when out in public
- From being accused of being drunk, to being verbally abused in the street – new research paints a bleak picture of a day in the life of someone with Parkinson’s
People with Parkinson’s are being subjected to ‘intolerable’ levels of prejudice and discrimination by institutions, members of the public and even their own friends, new research from Parkinson’s UK reveals today.
From being shouted at for using a disabled parking space through to being refused service in their local supermarket, data commissioned to time with the launch of Parkinson’s Awareness Week*, paints a deeply disturbing picture about public attitudes towards those living with the degenerative condition – with around four in ten people (41 per cent) living with Parkinson’s experiencing discrimination because of their symptoms.
Despite affecting around one in 500 people in the UK, public understanding and acceptance of Parkinson’s is woefully inadequate; with one in five people living with Parkinson’s (20 per cent) having had their symptoms mistaken by the public for drunkenness, whilst almost one in ten (8 per cent) have experienced hostility or have been verbally abused whilst out in public because of their condition.
Far from being isolated incidents, four in ten (43 per cent) people living with Parkinson’s reported experiencing some form of discrimination or misunderstanding at least once a month.
The research also revealed that these attitudes had contributed towards many people with Parkinson’s becoming isolated, with over half (54 per cent) of those with the condition feeling uncomfortable or nervous when out in public. Sadly, just under a quarter (23 per cent) of people with Parkinson’s 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, explains: “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 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.”
Ruth Martin, 41, a mother of two from Holmfirth was diagnosed with Parkinson’s in 2008, since her diagnosis she has struggled to deal with public reactions to her condition. She 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."
Conversely, over two thirds of people living with Parkinson’s (66 per cent) had been told they simply looked ‘too well’ to have the fluctuating neurological condition.
Steve Ford continued: “Life with Parkinson’s can be unpredictable, with symptoms often changing on a daily, and even hourly, basis. Because of this many people risk being told they simply look ‘too well’ to have a disability, even shouted at for using a disabled bay in a car park – this simply has to change.
“For people with Parkinson’s to continue living alongside such discrimination is plainly wrong. We hope that our campaign will encourage society to dispel some of the lingering fallacies surrounding the condition once and for all so that people with Parkinson’s gain the understanding they so desperately need.”
Throughout Parkinson’s Awareness Week (15-21 April 2013), Parkinson’s UK urged people to put themselves in the shoes of people with Parkinson’s, by arming themselves with basic information about what it is like for the 127,000 people living with the condition.
Notes: * All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 4,777 people, comprising those with Parkinson’s (2,903) and the family and friends of people with Parkinson’s (1,874). Fieldwork was undertaken between 14th February and 19th March 2013. The survey was carried out online.
About Parkinson’s Awareness Week
- Parkinson’s Awareness Week is an annual health awareness campaign organised by Parkinson’s UK. It aims to change public attitudes to the condition by exposing how many people with Parkinson’s face daily discrimination and hostility, poor levels of customer service, and even risk being arrested by the police.
- Parkinson's is a degenerative neurological condition, for which there currently is no cure. The main symptoms of the condition are tremor, slowness of movement and rigidity – and these can only get worse over time.
- This follows on from a survey last year (2012) that found one in ten people (16 per cent) reported that they would feel annoyed, embarrassed or uncomfortable if they encountered someone with a tremor.
- The campaign urges people to put themselves in the shoes of people with Parkinson’s, by arming themselves with basic information about what it is like to live with the condition.
- There are lots of ways to get involved – from finding out about the top five tips to make life easier for people with Parkinson’s to throwing a Party for Parkinson’s to raise funds for a cure.
- Visit parkinsons.org.uk/supportyou or more information.
About Parkinson’s UK
Every hour, someone in the UK is told they have Parkinson's.
It affects 127,000 people in the UK - which is around one in 500 of the population.
One in 20 people are under 40 when they are diagnosed.
Parkinson's is a degenerative neurological condition, for which there currently is no cure. The main symptoms of the condition are tremor, slowness of movement and rigidity.
Parkinson's UK is the UK's leading charity supporting those with the condition. Its mission is to find a cure and improve life for everyone affected by Parkinson's through cutting edge research, information, support and campaigning.
For advice, information and support, visit www.parkinsons.org.uk or call our free, confidential helpline on 0808 800 0303.
© Parkinson's UK 2013
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