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News and Opinions about MS, Health & Disability

Sensitivity to heat not affected by summer sunshine

heat

As summer continues with temperatures in the 30°s C (high 80°s), the hottest days now seem to be behind us here in the south of Spain. The temperatures peaked at over 100°, so the high 80°s is quite pleasant.

What’s more, the good news is that the hot weather has not caused me any heat sensitivity problems at all. But then, that’s exactly what I expected. And that is because my heat sensitivity is triggered by changes in temperature not consistent heat.

Some people were concerned about heat exhaustion when the learned that Lisa ad I announced we were moving to Spain, two years ago. But after a series of sudden temperature changes experienced in the UK, this is a walk in the park.

Heat in your marriage

Talking of my beloved Lisa, she never ceases to amaze me with her selfless dedication to my wellbeing.

I have heard from so many people with MS who have split up ad divorced when their partners decide that a life as a caregiver isn’t for them. It is so sad.

Lisa has known that I have MS right from the start of our relationship, I never tried to hide it. She agreed to marry me knowing what was in store for us both. Furthermore, her granddad had MS too, so she knew more than most husbands and wives when their spouses are diagnosed as having MS.

Perhaps that is not incredible, perhaps it should be expected but there are many who have found that not to be the case. The “till death do us part” of the marriage vows appears to have been lost on their partners.

Do you have the loving support of your spouse or have you split up? And just how does heat sensitivity affect you, or doesn’t it? Please let me know.

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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 Features Writer with Healthline, the fastest growing health information site. 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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Sunscreen compounds help suppress MS symptoms

Vitamin D, whether gained naturally with the help of sunshine or from a supplement, is widely seen as being beneficial if you have MS. Certainly, I have experienced a benefit from taking tablets on a daily basis.

Now, though, scientists are saying that sunscreen, that helps block the sun’s rays, can help suppress symptoms of the disease. At least, two ingredients of the sunscreen do the suppressing – and it was proved to work in mice.

sunscreen

Dr Hector DeLuca,, research team leader.

The ingredients are salate derivatives, which are nonsteroidal anti-inflammatory drugs.

University of Wisconsin, Madison, researchers’ study was published their study in Proceedings of the National Academy of Sciences. It was titled “Salate derivatives found in sunscreens block experimental autoimmune encephalomyelitis in mice.”

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Symptoms of MS can show years before disease itself

For once, I am pleased to know that I am not alone. Researchers in Canada report that people with multiple sclerosis can show symptoms of something wrong five years before disease onset. This is much earlier than previously thought, but just not as early as my own experience.

Let me explain. My first indication that all was not well was in the mid-1980s and doctors were concerned enough to order a lumbar puncture (spinal tap). However, for whatever reason, the result was negative. Doctors said don’t worry, it’s nothing serious.

Almost 20 years later, following further symptoms and new concerns of mine, I had more tests.  These showed I had MS, and the neurologist told me that he had gone through my medical records and found evidence of MS more than 25 years earlier. So, it looks like the 1980s’ lumbar puncture was a false negative.

The Canadian research, published in Lancet Neurology, and reviewed by Science Daily, is a first step toward identifying red flags. These should help doctors screen for the disease and start interventions earlier.

symptoms

Dr Helen Tremlett of the University of British Columbia.

“Proving that people with multiple sclerosis have already changed their behaviour in the five years before even the earliest medical recognition of the condition is very important. It means we have to look beyond those five years to understand how it is caused,” said Dr Helen Tremlett. She is senior author of the study and an associate professor for neurology in the department of medicine at the Djavad Mowafaghian Centre for Brain Health.

Symptoms well before MS recognized

The researchers examined health records of 14,000 people with multiple sclerosis over a 20-year period and compared them to the health records of 72,000 people without the disease. This study showed there is a phase where people show symptoms before multiple sclerosis is medically recognized.

“There’s something going on here that makes this population of people unique,” said José Wijnands, first author of the manuscript. He is a postdoctoral fellow and a Michael Smith Foundation for Health Research trainee.

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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 Features Writer with Healthline, the fastest growing health information site. 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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Silly season lacks real news stories – whether general or about disabilities

It’s silly season right now. At least, it is in the UK and many other countries. In the US, it is called the slow news season. Elsewhere it can be called cucumber time, or another such term.

The reason, of course, is that at this time of year news is harder to come by. Yes, there are still things going on but in the northern hemisphere parliaments and congresses have long summer breaks. So do courts. South of the equator, the season tends to refer to a period surrounding the Christmas and New Year holidays. Remember, December and January are summer months there.

silly seasonSilly season is a term with which I am quite familiar, having spent my career in journalism. I know full well about the scarcity of real news during the summer.

And that’s why we see frivolous news items in the Press that would not be likely otherwise. Frivolous items that give rise to the term ‘silly season’.

It’s true, too, for news about disabilities. Whatever, and however, a disability affects us – developments are scarce during these months. Changes to benefits? Sorry, no, the government is on holiday.

The independent organization Benefits and Work publishes a regular newsletter, but not during the silly season. In its last edition on July 17, it said: “This is our last newsletter, and money-off coupon, until Friday September 6. Parliament is about to go into recess and will return on September 5, briefly, before the conference season begins.

Silly season = slow news

“That should mean that we are spared any more new initiatives or bogus consultations before the Autumn and gives us all a chance to recharge our batteries. But, if anything dramatic does occur relating to benefits, we’ll bring out a special edition.”

In the UK, parliament has not met since July 20 and returns on September 5. In the US, congress finished one week later, on July 28, but also restarts on September 5.

Any news about developments in new drugs and treatment of diseases such as multiple sclerosis? No, not at all. The last news update on the website of the MS Society was posted on June 30. In the USA, the National MS Society last posted a news item on August 8 – and that wasn’t about MS. It was about the congress summer holiday.

And don’t expect to take your benefits claim to court either. The UK High Court’s summer break lasts from August 1 to the beginning of October.

Oh well, it looks as though the news media will, once again, have to resort to the frivolous.

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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 Features Writer with Healthline, the fastest growing health information site. 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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Blood test can shorten MS diagnosis to 7 days

IQuity has launched1 an RNA-based2 blood test that, it says, can confirm a diagnosis of multiple sclerosis in seven days.

This is much faster than using conventional diagnostic methods. These usually involve a series of visits to clinics, various tests and can many months to complete. Sometimes even longer.

The new test is called IsolateMS and is 90% accurate.

People have long been concerned about the time conventional diagnosis takes. This faster method, with results in just seven days, will allow doctors to start treatment of MS patients earlier than before. Earlier treatment can help slow the illness and allow better

isolatems

IQuity CEO Dr Chase Spurlock.

IQuity chief executive officer Dr Chase Spurlock said: “The 90% accuracy rate of IsolateMS should give providers and patients a great deal of confidence in their results.

IsolateMS elimates period of uncertainty

“This test augments existing clinical practice and eliminates the period of uncertainty that can accompany an MS diagnosis. IsolateMS allows patients and providers to begin discussing next steps immediately.”

When I think back to the time doctors diagnosed MS in me, I remember it was quite fast. Well, fast in conventional terms – only three months. But, wow, seven days would have been great. And I would definitely have swapped that process for a simple blood test.

Added to that, the diagnosis might have been made years earlier when symptoms, later said to be MS, went unrecognized.

 The company has not confirmed its plans to launch IsolateMS outside the US.

1 IsolateMS has been launched in the USA but, initially, is not available in six states. These are: California, Florida, Maryland, Pennsylvania, Rhode Island and New York. IQuity will update this list as these licenses are obtained. 

2 Ribonucleic acid (RNA) is a polymeric molecule essential in various biological roles in coding, decoding, regulation, and expression of genes. RNA and DNA are nucleic acids, and, along with lipids, proteins and carbohydrates, constitute the four major macromolecules essential for all known forms of life.

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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 Features Writer with Healthline, the fastest growing health information site. 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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Disabled employees: What does Brexit mean?

As representatives of the UK and the European Union (EU) negotiate about Brexit, our attention is focused on disability. Now, the spotlight is on how disabled employees may be affected by the country’s withdrawal from the EU.

The Business Disability Forum says that disabled employees, including people with MS, potentially have a lot to lose.

Disabled employees

Diane Lightfoot, Business Disability Forum chief executive.

The forum is a not-for-profit member organisation, headed by chief executive Diane Lightfoot. It aims to makes it easier and more rewarding to do business with, and employ, disabled people.

It warns: “The legislative impact of Brexit – and what it means for disabled employees and customers – is an area of concern. There is real worry that recent progress in the EU around access and equal treatment may be lost, or that standards of accessibility may slip.

“But fair treatment of disabled people has always been about more than just legal compliance. From a business point of view, to harness the full potential of disabled workers, to reduce staff turnover and absence, and to access the £212bn purple pound means going beyond minimum legal standards.

Disabled employees overseas

“It means we need to achieve the best outcomes for all people, with or without disabilities. It goes to the core of being businesses that people will wish to support or want to keep working for.”

Additionally, the forum believes that focusing on good practice rather than legal compliance will only become more important if the UK wishes to be a country that looks outward, and does business on the international stage.

“The work we do overseas focuses not on legal compliance but a universal code of practice for doing business with disabled people,” it says.

“Universal values apply to everyone. Principles for treating disabled people fairly, and working with them, are similar to good customer service, good management and good design.

“Even more importantly, working this way means being disability-smart isn’t effort, but attitude – something ingrained in what we do.

“Brexit may generate uncertainty around legislation and legal risks, but this needn’t bear on organisations doing business with disabled people. In the end, being disability-smart is just about aiming for the best outcome for everyone,” the forum says.

ABOUT THE BUSINESS DISABILITY FORUM

The Business Disability Forum says it builds disability-smart organisations to improve business performance by increasing confidence, accessibility, productivity and profitability.

It does this by bringing together business people, disabled opinion leaders and government to understand what needs to change. Disabled people must be treated fairly so they can contribute to business success, to society and to economic growth.

It has more than 20 years’ experience working with public and private sector organisations, formerly as Employers’ Forum on Disability. Members employ almost 20% of the UK workforce and seek to remove barriers between organisations and disabled people. It is a key stakeholder for both business and government, and has contributed to development of meaningful disability discrimination legislation.

Business Disability Forum provides pragmatic support by sharing expertise, giving advice, providing training and facilitating networking opportunities. This helps organisations become fully accessible to disabled customers and employees.

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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 Features Writer with Medical News Today. 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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MS featured in story lines on both the large and small screen

bad days

Multiple sclerosis was introduced as a story line in top UK soap Coronation Street four months ago. That was when Johnny Connor (played by Richard Hawley) received a diagnosis of the disease. And that got me thinking about other portrayals of people with MS on film and television.

But let’s start with Cornonation Street. It’s Britain’s longest-running soap opera, first broadcast in 1960, and has never shied away from social issues. These have included drug abuse, wrongful imprisonment, and even murder.

Writing about the diagnosis on its website, the MS Society commented: “Leading up to this revelation, Connor had struggled with his balance and appeared tired and impatient. He agrees to see a doctor at the insistence of his daughter Kate (Faye Brooks), but then tries to keep his MS a secret from her and from his fiancée, Jenny Bradley (Sally Ann Matthews).”

He eventually admits the truth to his daughter but calls off his wedding to Jenny, as he doesn’t want her to feel obliged to be his caregiver.

Trainwreck, a romantic comedy with Amy Schumer, tells the story of a woman afraid of commitment who finally meets Mr. Right, played by Bill Hader.

The movie features Colin Quinn as Gordon Townsend. He is a fictional version of Schumer’s real father, who was diagnosed with multiple sclerosis when Amy was 12. In the movie, Quinn’s character has MS and struggles with complications of the disease.

story

Martin Sheen as President Josiah Bartlet in The West Wing.

Fans of the award-winning TV show The West Wing will know the main character is the, a President of the United States played by Martin Sheen. He had relapsing-remitting MS while in office. The show’s producer researched illnesses that could be debilitating but not fatal and that could be difficult to diagnose.

Sheen’s character, President Bartlet, managed to keep his symptoms under control in the public eye. But MS became a central story line when he failed to make his disease public during his election campaign.

MS story line presidential in West Wing

The West Wing’s portrayal of multiple sclerosis through Bartlet was applauded by Mike Dugan, then president of the National Multiple Sclerosis Society. Dugan, now president emeritus, said the group was pleased the character was a world leader. The society welcomed the fact the show educated viewers about MS and made it clear the disease is not fatal.  It was also pleased that Bartlet was shown as to take advantage of medical breakthroughs to treat his condition.

Dugan said: “Since fiction often becomes more real to people than fact, President Bartlet’s life with MS has potential for great good. The public will become more accepting of individuals with MS. And individuals with MS will become more accepting of themselves and their abilities to lead fulfilling lives.”

Chicago Hope was set in a hospital in Chicago. In 1995, it featured the role of an MS patient for comedian and movie star Richard Pryor, who had multiple sclerosis in real life. In the episode, Pryor played Joe Springer, a character embittered by his MS and hoping to find some kind of miracle surgery that could enable him to walk again. Needless to say, he doesn’t find what he’s looking for.

I am encouraged that film and television programme makers continue to include MS, and other illnesses, in their stories. The more publicity, the greater public awareness, the better.

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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 Features Writer with Medical News Today. 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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Good and bad days on the MS merry-go-round of life

bad days

Pride becomes before a fall, or so the saying goes, and that certainly seems true for me.  I had been getting around a lot more easily, feeling pleased, using my new rollator but then …

Ok, all of us who live with multiple sclerosis have good and bad days. Good days when we find it fairly easy to get around or do things; bad days when the opposite is true.

Two days ago, all was well. I was out and about and used my rollator to help me walk into our local pharmacy to collect my medications. Feeling comfortable and at ease, I felt strong and confident.

Then I drove home where, again using my rollator, walked up the ramp to the front door and went indoors.

Yesterday, regretfully, was not the same story. Not by a long shot!

I went out the front door, started down the ramp and my legs soon felt shaky and my arms so weak that I was unable to support myself on the rollator. It was no surprise when I sank to the ground. After a few minutes, by sitting on the side of the ramp, I managed to regain my feet and made my way to the back of our car, where Lisa had my wheelchair ready.

Bad days are not so easy

All that was left to do was to walk across some gravel and transfer from the rollator to my wheelchair. Easy right? Well, yes, on a good day. Even on a moderate day. But yesterday was neither of those, it was a very bad day; bad to ******* awful.

And that’s why my easy transfer ended up causing me to fall again, this time in the quiet road outside our home. The sky was blue, the sun blazing down. It was midday, and very hot. Remember, we live in the south of Spain and today it got to 37°C, which is almost 99°F, and that’s the shade temperature. I was in direct sunlight, the humidity was high. It was hot. It’s been like that for weeks.

I made several unsuccessful attempts to get up but, eventually, Lisa phoned for help. In next to no time Eddie and Bob arrived and got me off the road surface and safely back in my wheelchair.

Difficulty resolved. Today is another day, I wonder what that will bring. Let’s hope it is a good one.

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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 Features Writer with Medical News Today. 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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Benefits for disabled people are in chaos, government admits delays

Introductions of two flagship benefits that affect people with disabilities are both behind schedule. The government department responsible has confirmed that the nationwide roll out is going slower than anticipated.

benefits

Photo: The Independent.

The UK government’s Department for Work and Pensions (DWP) has confirmed that Personal Independence Payment (PIP) is far behind schedule. This is the benefit brought in to replace the Disability Living Allowance (DLA), which the government thought unfit for purpose.

And the much-vaunted Universal Credit (UC) has just 540,000 recipients, that is 90% behind schedule. UC was designed to replace six other benefits. These are: income-based Jobseeker’s Allowance (JSA), Housing Benefit, Working Tax Credit, Child Tax Credit, income-related Employment and Support Allowance (ESA), and Income Support.

As far as PIP is concerned, all existing DLA claimants should have received ‘invitations’ to claim PIP by April of this year. Well, that didn’t happen, that target is now history. Now, the aim is that all working age DLA claimants will have received their invitation letters by late 2018. And final assessments and transfers are now expected to be completed around mid-2019.

Benefits massively behind schedule

According to Benefits and Work website, there has been a huge fall in the number of DLA to PIP cases being sent to DWP’s assessment companies Atos and Capita since January of this year. So, maybe the DWP will not be able to keep to that new target either.

Roll out of UC is massively behind schedule.  It is unlikely to be completed before 2022.

Call me a cynic, if you like, but I believe that target is wildly optimistic. Most UC claimants so far have made the simplest claims, what’s going to happen when they make complex ones? Can the DWP cope?

Citizens Advice Bureau (CAB) published a report, last month, and urged the government to pause the roll out of UC. This was because of major problems it is causing even the most straightforward claimants, including 57% having to borrow money while waiting for their first payment.

The DWP, however, has dismissed the concerns of the CAB and has confirmed that the roll out of full service UC will increase from 5 areas a month to 50 areas a month from October.

Whether that will happen, though, is matter for conjecture. I have my doubts.

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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 Features Writer with Medical News Today. 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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