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News and Opinions about MS, Health & Disability

‘Funny walk´ is disgusting reason to throw disabled customer out of store

Do you “walk funny”? I sure know that I do, whenever I try. Drop foot causes my left foot to drag and the whole effort is a struggle.

Mobility problems like this are a way of life of people with disabilities, however caused. My difficulties stem from multiple sclerosis but many of you may have Parkinson’s or a yet different disease.

Our walking issues tend to only be seen when we try to carry on as normal, and can be misunderstood. I have been mistaken for being drunk but, each time, a quick explanation that I have MS was enough.

Apparently, however, a similar explanation was not enough in one Halfords store. There, although he told the manager that he had Parkinson’s, she told him to leave. That is disgusting – and a terrible indictment of Halfords’ staff training on disability awareness.

This is how BBC News reported the story online:

Parkinson’s sufferer ejected from Halfords ‘for funny walk’

A man with Parkinson’s disease was told to leave a Halfords store for acting suspiciously by “walking funny”.

Chris Cartlidge, 51, was ejected from the shop in Trent Vale, Stoke-on-Trent, after his symptoms caused his leg to stiffen and drag on the floor.

He said when he told a shop assistant he had Parkinson’s, she replied: “I don’t care what you’ve got, I want you to leave the store.”

Halfords said it had “sincerely apologised” to him and his family.

Mr Cartlidge, who was diagnosed with Parkinson’s 10 years ago, said he had approached the shop assistant for help in finding some car parts in January.

Devastated and mortified

“I try to be as normal as possible but it’s really demeaning when people say things like that to me,” he said.

awareness

Katrina Cartlidge.

His daughter Katrina Cartlidge said she was “devastated and mortified” by the way her father was treated at the store on Springfields Retail Park.

“It’s hard to see him suffering like this,” she said, adding that he tried to “make the most of life” and remain as active as possible.

“I would never expect someone to treat my dad that way or anyone to be judged by that – by disability.”

A spokesperson for Halfords said its team “fell short of meeting our standards”.

“We are all very sorry for Mr Cartlidge’s experience and sincerely apologised to him and his family at the time for any embarrassment this misunderstanding caused.”

Whoa, ‘misunderstanding’? There was no misunderstanding. It was a complete lack of understanding of a person with a disability. Amazingly, even after she was told he had Parkinson’s disease, the store manager didn’t care and ordered him to leave. So, no misunderstanding – more a complete lack of judgment, lack of disability awareness, and lack of customer relations.

Benali Hamdache, campaign manager at Parkinson’s UK, said the charity is “calling for a little bit more awareness and a little bit more understanding”.

“We hope that Halfords can actually start by leading with an example and embrace our call to take on some training,” he added.

I fully support these views, Parkinson’s UK is really speaking for everyone with disabilities, but I must go further. Halfords needs to rigorously push disability awareness, ensure all staff have appropriate training, and monitor everyone’s adherence to it.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek medical care for any health issues and consult a doctor before starting a diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Frankenstein new treatment for degenerative diseases

bioquark31

It may seem a bit creepy, nightmarish or even bordering on Dr Frankenstein but this is real. Scientists are going to attempt to bring parts of the central nervous system (CNS) of brain dead people back to life.

An American biotech company has been granted ethical permission to recruit 20 patients who have been declared clinically dead from a traumatic brain injury, for the amazing trial.

Scientists from Bioquark are planning to use various therapies, which include injecting the brain with stem cells and a cocktail of amino acids, as well as deploying lasers and nerve stimulation techniques which have been shown to bring patients out of comas. They hope that their findings will lead to the development of new therapies for degenerative CNS diseases such as multiple sclerosis.

On The Telegraph newspaper’s website, Science Editor Sarah Knapton writes:

Trial participants will have been certified dead and only kept alive through life support. They will be monitored for several months using brain imaging equipment to look for signs of regeneration, particularly in the upper spinal cord – the lowest region of the brain stem which controls independent breathing and heartbeat.

The team believes that the brain stem cells may be able to erase their history and re-start life again, based on their surrounding tissue – a process seen in the animal kingdom in creatures like salamanders who can regrow entire limbs.

Ira Pastor, the CEO of Bioquark Inc said: “This represents the first trial of its kind and another step towards the eventual reversal of death in our lifetime.

“We just received approval for our first 20 subjects and we hope to start recruiting patients immediately from this first site – we are working with the hospital now to identify families where there may be a religious or medical barrier to organ donation.

“To undertake such a complex initiative, we are combining biologic regenerative medicine tools with other existing medical devices typically used for stimulation of the central nervous system, in patients with other severe disorders of consciousness.

 “We hope to see results within the first two to three months.”

The ReAnima Project has just received approach from an Institutional Review Board at the National Institutes of Health in the US and the team plans to start recruiting patients immediately.

The first stage, named ‘First In Human Neuro-Regeneration & Neuro-Reanimation’ will be a non-randomised, single group ‘proof of concept’ and will take place at Anupam Hospital in Rudrapur, Uttarakhand, India.

Brain stem death is when a person no longer has any brain stem functions, and has permanently lost the potential for consciousness and the capacity to breathe.

A person is confirmed as being dead when their brain stem function is permanently lost.

However, although brain dead humans are technically no longer alive, their bodies can often still circulate blood, digest food, excrete waste, balance hormones, grow, sexually mature, heal wounds, spike a fever, and gestate and deliver a baby.

Recent studies have also suggested that some electrical activity and blood flow continues after brain cell death, just not enough to allow for the whole body to function.

And while human beings lack substantial regenerative capabilities in the central nervous system, many non-human species, such as amphibians and certain fish, can repair, regenerate and remodel substantial portions of their brain and brain stem even after critical life-threatening trauma.

“Through our study, we will gain unique insights into the state of human brain death, which will have important connections to future therapeutic development for other severe disorders of consciousness, such as coma, and the vegetative and minimally conscious states, as well as a range of degenerative CNS conditions, including Alzheimer’s and Parkinson’s disease,” added Dr Sergei Paylian, Founder, President, and Chief Science Officer of Bioquark Inc.

Is this an encouraging development or is it rather like the worst horror story around?

 

 

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Fear is real as benefit change countdown continues

 dla ending pip

Time marches on and the calendar pages turn ever closer towards the date when the UK’s Disabled Living Allowance (DLA) is phased out for working age people1 and replaced with Personal Independence Payment (PIP). DLA recipients who have not yet been invited to apply for PIP are fearful of the day when the phone rings or the dreaded brown envelope drops through the letterbox.

DLA has been the benefit for people who have extra care needs or mobility needs as a result of a disability2 but the message is clear. DLA is ending and that person’s claim will end on a specified date unless a claim is made for PIP. If a claim is made, DLA will continue to be paid until that new application is assessed and decided.

Then they have the stresses of making the claim, possibly being required to attend a face-to-face interview, and finally waiting in trepidation for notification of the decision to arrive – in another brown envelope.

Of course, there are good stories as well as bad. Some people have gone from lower rate care and no mobility on DLA to the enhanced (highest) rate in both care and mobility under PIP. However, for others the opposite has been true with worst case cases going from highest on both sides with DLA to absolutely nothing at all from PIP.

There just seems no rhyme nor reason for the decision-making process.

Official figures3 show that of the nearly 261,500 DLA claimants so far reassessed4 for PIP 74%, or 193,500, have received an award – 67% (128,000) at the enhanced rate and 33% (63,500) at the enhanced rate for both care and mobility components.

And of the 54,200 original decisions that were challenged by claimants, 28% have had their award changed through the mandatory reconsideration process.

But the success of 74% of DLA claimants in gaining PIP awards still leaves a worrying 24%, or 68,000, with nothing.

The roll out of PIP has been beset with problems. The original scheduled implementation date of October 2013 was delayed owing to assessments taking much longer than originally planned. Now, all existing DLA claimants (aged 16 to 64 on 8 April 2013) will have been invited to claim PIP by 30 September 2017, according to the DWP.

 

 

Working age means anyone aged 16 to 64 on April 8, 2013.

Disability means any kind of physical or mental disability, such as Parkinson’s, multiple sclerosis, MND, epilepsy, blindness and many, many more both visible and invisible.

3 Department for Work and Pensions: Personal Independence Payment Official Statistics, published March 16, 2016.

As at January 31, 2016 – the latest figures available, published on March 16.

 

 

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Crabb set to unveil new plans for disability benefits

stephen crabb hocWork and Pensions Secretary Stephen Crabb addresses the House of Commons. Prime Minister David Cameron is watching on.

Stephen Crabb, who was appointed as the UK’s new Work and Pensions Secretary after the resignation of Ian Duncan Smith, is to make a House of Commons speech next Tuesday, April 12. He is expected to set out his (and the government’s) vision for the future. And what he has to say will probably have a significant impact on all disabled people with Parkinson’s Disease, multiple sclerosis, EDS and a host of other conditions both visible and invisible.

Rumours from the Department for Work and Pensions, as reported by leftist Vox Political, suggest that he is likely to announce renewed plans to change the descriptors to Personal Independence Payment (PIP) for aids and adaptations in August or September. That, of course, won’t mean that the government is backtracking on its statement of having no plans to make the changes dropped only two weeks ago – no, these will be ‘new’ changes.

The Sunday Times newspaper has already revealed that Crabb is expected to say that he is unhappy with the work of companies tasked with the role of assessing claimants for both Employment and Support Allowance (ESA) and PIP. It said he was looking to end the contracts with those companies – we will see.

Another possible development may be to follow the cut of £30 being made to new ESA claimants in the Work-Related Activity Group by making a similar cut to the Support Group’s payments – perhaps even, eventually, abolishing ESA altogether and instead including its payments within Universal Benefit.

Many of these welfare reform proposals appear to have originated in the right-wing Reform think-tank that published its recommendations in February. One of those was the cut in ESA for people in the Work-Related Activity Group.

In a nutshell, Reform’s plan includes:

  • Setting a single rate for out-of-work benefit. The savings from this rate reduction should be reinvested into Personal Independence Payment – which contributes to the additional costs incurred by someone with a long-term condition – and into support services;
  • Ending the Work Capability Assessment in its current form;
  • Abolishing Employment and Support Allowance altogether and rolling sickness benefits into Universal Credit with “a single online application for the benefit, including a ‘Proximity to the Labour Market Diagnostic’ to determine a claimant’s distance from work and a health questionnaire”;
  • To have all sickness benefit reduced to the same level as Jobseekers’ Allowance.

Yes, really! If Vox Political is correct, cutting ESA for people in the Work-Related Activity Group was only part of it. If the plan to roll sickness benefits into Universal Credit is implemented, then people in the Support Group – those with serious conditions that are not expected to improve within the foreseeable future – stand to lose a huge amount of their weekly income.

All this from the Conservative government that, Stephen Crabb said on March 21, has no plans to make further welfare cuts during this parliament. Of course, we must balance that with the word from the Treasury that same day; that what Crabb said didn’t at all mean no more cuts in this parliament, just none planned.

Next week, we may discover what plans there are now.

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Do charities really want to find cures?

logo mndalogo bhflogo alzheimers

logo crukms logo

logo parkinsonlogo kiidney

It really is a conundrum. Charities that support research into finding cures and treatments for particular diseases all seem to say that they want to end that illness, to beat it – finally. But, the question is, do they really?

Recently, some voices have been raised against certain of these charities for ignoring potential cures and continuing to be involved in research into new drug treatments; which means new sales and profits for pharmaceutical companies. Likewise, drug companies sell medicines. They get more money from treating illnesses than curing them.

It is hardly surprising that charities are seen as reluctant to find real cures that will put them out of business. You just need to look at the salaries paid to their chief executives.

Of course, similar comparisons can be done across research charities in various countries around the world but that would generate much more data that would, to my mind, make this post less attractive to read. Therefore, I chose just one country and, being British, that one is the UK.

As I have multiple sclerosis, let’s start with the MS Society in the UK. That, according to the last available annual accounts, ending December 31 2014, has seven employees whose salaries are in excess of £60,000 a year. Two of these are between £90,000 and £100,000 of which one, presumably, is chief executive Michelle Mitchell.

Other notable UK charities who are battling illnesses for which research is still needed include Cancer Research UK, British Heart Foundation, Kidney Research UK, Pancreatic Cancer Research Fund, Alzheimer’s research UK, Parkinson’s UK and the Motor Neurone Disease Association. There are, of course, many more; this is just an indicative sample.

The chief executives of these charities are paid these salaries, as itemised in their most recently available annual accounts: Cancer Research UK – up to £250,000; British Heart Foundation – £165,000; Parkinson’s UK – up to £120,000; Kidney Research UK – up to £110,000; Alzheimer’s Research UK – up to £100,000; Motor Neurone Disease Association – up to £99,999; and Pancreatic Cancer Research Fund – in excess of £60,000. Note: All ‘up to’ figures should be read as in a £10,000 up to the figure quoted.

Looking at those, mainly, six-figure salaries and you can see that the vocal protesters may have a point or two. It is all very well for a particular charity to be involved with discovering or testing new drugs. That means they can continue in the business of raising money and carry on paying themselves huge salaries.

Now, I am not suggesting that these salaries are not earned, far from it. If they want the best person for the job, they have to pay competitive salaries. But, in doing so, they have to be transparent in their dealings and be genuinely open to new therapies that could cure the particular disease they say that they are committed to defeating.

Nothing would please me more than seeing charities being wound up because cures had been found. What do you think?

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