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50shadesofsun

News and Opinions about MS, Health & Disability

President-elect Trump on Disabilities, what now?

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What does the election of Donald Trump mean for people with disabilities such as multiple sclerosis?

Yes, two days ago the people of the U.S.A. decided who they wanted as their next President. They were faced with a difficult choice between a candidate with no experience of holding an elected public office and one who had served as a senator and Secretary of State. Ok, they could have ignored the two main candidates and voted for another candidate but, realistically, it was a choice between Trump and Clinton.

Now, before I go any further, it is essential to point out that I am not American and so am commenting from the position of an observer.

So, let’s take a look at what President-elect Donald Trump said about disabilities and social security payments.

Back in 2013, speaking at the Conservative Political Action Conference, in Washington, Trump said: “As Republicans, if you think you are going to change very substantially for the worse Medicare, Medicaid and Social Security in any substantial way, and at the same time you think you are going to win elections, it just really is not going to happen.”

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President-elect Donald Trump.

In Time to Get Tough he said; “Social Security faces a problem: 77 million baby boomers set to retire. Now I know there are some Republicans who would be just fine with allowing these programs to wither and die on the vine. The way they see it, Social Security and Medicare are wasteful ‘entitlement programs’.

“But people who think this way need to rethink their position. It’s not unreasonable for people who paid into a system for decades to expect to get their money’s worth – that’s not an ‘entitlement’, that’s honoring a deal. We, as a society, must also make an ironclad commitment to providing a safety net for those who can’t make one for themselves.

“Social Security is here to stay. To be sure, we must reform it, root out the fraud, make it more efficient, and ensure that the program is solvent.

“Same goes for Medicare. Again, people have lived up to their end of the bargain and paid into the program in good faith. Of course, they believe they’re ‘entitled’ to receive the benefits they paid for – they are!”

Tackling the issue of fraud itself, in Time to Get Tough, he said: “The top estimates are $2,340,000,000 in Medicare fraud over a decade – or 16% of America’s entire national debt!

“Then there’s the disability racket. Did you know that one out of every 20 people in America now claims disability? That adds up to $170 billion a year in disability checks. Between 2005 and 2009, it is estimated that $25 billion were eaten up in fraudulent Social Security Disability Insurance filings. On and on, scam after scam it goes; as always, taxpayers are the ones getting stiffed.”

What next, I wonder?

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/didorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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When I’m 64? I got there yesterday!

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When I get older losing my hair

Many years from now

Will you still be sending me a valentine

Birthday greetings, bottle of wine?

If I’d been out till quarter to three

Would you lock the door?

Will you still need me, will you still feed me

When I’m sixty-four?

That’s the opening verse of The Beatles’ song When I’m 64, released as an album track in 1967, apparently never as a single. Although credited to Lennon-McCartney, it was actually written by Paul alone with Lennon reported as saying: “I would never even dream of writing a song like that.”

I got to thinking of those lyrics because, in my case, ‘When I’m 64’ is not ‘Many years from now’. In fact, it has arrived; yesterday was my 64th birthday.

So, how is age treating me? By itself, not too badly. Multiple sclerosis is enough of a handful without effects associated with aging.

64But let’s return to those lyrics. ‘Losing my hair’, no, not me. I have always had thick hair which was blond and curly as a child (that’s me in the picture, it really is) but now darker and wavy if I let it grow. These days, there are a few grey hairs but nothing much.

‘Will you still be sending me a valentine, birthday greetings, bottle of wine?’ Most definitely, yes. That’s yes to all three.

As to ‘out till quarter to three’, that would only happen if Lisa and I were out together. So no risk of her locking the door.

Then we get to `’Will you still need me, will you still feed me’, answers Yes and Yes – without a doubt.

Thinking back more than a good few years, to before the song was released, my maternal grandfather died aged 64, on his birthday. Granddad still had a full head of hair but it was totally grey and he looked elderly. It’s strange how looks of certain age groups have changed over the years.

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/didorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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Always learning about MS, never an expert

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School’s over, learning stops. Er, no, it doesn’t.  Ok, then, so university is over, that’s when learning stops. Hm. no, wrong again, it doesn’t end then either.

The pure and simple fact is that nobody every stops learning and anybody who says he or she knows everything, is lying and, actually, is close to being an idiot.

learningNo matter how old you are, no matter how much you have learned or qualifications you may have gained, you never stop learning. You learn every day until this life ends.

Ever since being diagnosed with MS, in April 2002, I have learned a lot about this disease. I was active in the UK’s MS Society, was founder-secretary of MS Synergy Independent Support Group and have talked with many people who also have the illness, and spoken with medical professionals who specialize in MS and other auto-immune diseases. Together, these have all provided me with excellent information.

Since beginning to write for MS News Today, my access to sources of information has grown exponentially along with my knowledge of the disease. This helps me to write with a degree of authority but please don’t get the idea that I am any kind of expert, because that is a term that does not describe me.

In fact, years ago on a training course, we were advised never to call ourselves experts because an ‘ex’ is a ‘has been’ while a ‘spurt’ is a ‘drip under pressure’. Think about it, it does make sense in a weird sort of way.

So, no, not an expert. What I am is a career journalist who has become a specialist writer about multiple sclerosis because I am one of the many people living with the disease. It’s as easy as that.

As a result of my position, people often ask me questions about MS and how it affects them, about various treatments and so on. Such questions are answered according to the facts or, where necessary, in line with my own opinions – which are always given as my views, nothing more, nothing less.

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ian profile 50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/didorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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What having multiple sclerosis means

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Taking it easy the other evening while the television droned n the background, after all, how many times can you watch reruns of even the best programmes, got me thinking about what having MS means to me.

It’s strange what the mind turns to when in a semi-comatose state!

It is now 14½ years since what had been a series of mysterious symptoms was finally diagnosed as multiple sclerosis. Symptoms that were investigated some 15 years earlier, including a lumbar puncture, but revealed nothing.

But in 2002, thanks to rapid action by my GP and some speedy responses at my then local hospital in the UK, the neurologist gave me his diagnosis in April. From referral from my GP to positive diagnosis, including all tests, took just three months.

The initial feeling was relief that the symptoms belong to a disease which has a name; my wife at the time was just pleased that it was not a brain tumour. I don’t remember the exact date. It was in April 2002, that’s as close as it’s possible to recall.

At the time, I knew nothing about the disease except it had a strange name and I needed to learn to spell it. Then I needed to learn more about it and for supplying a great deal of information, a tribute must be paid to the MS Society in the UK, where I then lived.

MS means early retirement

With mobility affected, going out to work proved possible for the next five years but then it just became too much and early retirement beckoned.

In the next few years, life was turned upside down but not because of MS. Events led to divorce and remarriage just eight weeks later.

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In my wheelchair on a better day.

Last year, by then using a wheelchair for all but the shortest of distances, I decided to start this blog and, after a slow start, it really took off.

At the same time, Lisa and I were planning our move to Spain, to enjoy sunny weather so unlike the grey cloudy skies so usual in the UK.

Now in Spain, my mobility is no better but recently it seems no worse either.  Grip through my left hand is still poor but fractionally better than it was.

This blog led to an unexpected development in May this year when I was contact by MS News Today and asked to write for that website. Now, less than six months later I am busy developing and managing a team of patient specialists across some 50 disease/disorder sites.

And the great thing is that I can do everything from the comfort of my own armchair. What’s more, everything I do for this blog or MS News Today is great therapy

People talk about MS being one of the invisible illnesses, the sort that means people can have without others seeing it. In my case, I’m well beyond that stage if trying to walk, but sitting down, you’d be hard-pressed to tell.

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ian profile

50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/didorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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Green Paper shows disability support plans

Earlier this week, on Monday October 31 to be exact. the UK government published its Work, Health and Disability Green Paper. Yes, believe it or not the government chose to publish it on Halloween. Hopefully that is not an omen of things to come.

A Green Papers, popularly known as a discussion paper, is designed to stimulate debate on government proposals before it decides on a course of action.

Damien Green: Self-interest.

Damien Green MP.

Publishing the paper, Work and Pensions Secretary Damian Green said he wanted “targeted and personalised support” for people with chronic conditions while they look for work.

The green paper shows that the government plans to introduce a new Personal Support Package for people with health conditions who are out of work. This, supposedly, is to ensure that those concerned receive tailored health and employment support from work coaches and community partners with expertise in disability.

Another government plan is to reform the work capability assessments process for people claiming Employment Support Allowance and Universal credit. This scheme is so flawed that tinkering around the edges just won’t be enough, it needs to go, now.

One positive move is a plan to separate assessments for financial support from employment support. If that happens, which I doubt, it should be possible for people who may be able to work with the right support to access the help they need without affecting the financial support they receive. Yeah right!

Both the MS Society and the MS Trust gave guarded welcomes to the green paper.

MS Society chief executive Michelle Mitchell said: “Since its inception the Work Capability Assessment has failed to recognise the fluctuating nature of conditions like MS and the debilitating impact of their more ‘hidden’ symptoms. We welcome the government’s plans to review this assessment and to improve the support available to people who may be able to work.

“We are keen to help create a system that makes more sense. However, it must be recognised that many people with long-term progressive conditions will simply be too unwell to work and no amount of extra employment support will change that.”

She added: “We’ve been calling on the government to make sure the welfare system makes sense for those who rely on it. As part of our MS: Enough campaign, we’ll be reviewing the government’s proposals and what they mean for people with MS.”

MS Trust policy officgreen paperer Amanda Croft said: “The right work is a big driver of overall health and wellbeing, but we know that unemployment rates are much higher among people with MS than the general population. The MS Trust welcomes this recognition from the government that people with long-term conditions are still a valuable asset to the workforce, and that flexibly tailored support can help people with conditions like MS to achieve their employment goals.

“The unpredictable nature of MS symptoms is a particular challenge for individuals with MS and employers. Work capability assessments have historically been poorly designed for a fluctuating condition like MS. We urge the government to take the opportunity offered by their proposed review of the assessment process to ensure that the fluctuating and hidden symptoms of MS and their impact are properly taken into account.

“It is imperative that better employment support is combined with a fair and compassionate welfare system that offers support and security to those whose condition makes it impossible for them to work.”

 

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Sharing life of caring wife of husband with MS

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Today, I have handed the writing over to my wife Lisa to talk about caring for a husband with multiple sclerosis.

Lisa writes:

Yesterday was a special day as Ian and I celebrated our wedding anniversary and enjoyed a lovely meal out in a great local restaurant here in Spain.

With Ian reaching his 64th birthday next week, and me being a few years younger, it may be surprising that yesterday was only our fifth anniversary. We have, obviously, both been married before.

carerI knew that my beloved had MS well before we tied the knot and knew what that could mean for both of us because my grandfather had it too.

As I am Ian’s wife, being his personal carer also falls to me. But that is not onerous to me, after all we are deeply in love and have a great sharing life; what I do as a carer is not a duty but a labour of love.

So, what is the care I give on a daily basis? There are actually too many to list in detail but I’ll just touch on the major ones.

Personal care

  1. Fastening/unfastening buttons
  2. Helping to shower
  3. Personal grooming

Living

  1. Preparation of all food and drinkH
  2. Cutting up anything large into bite-size pieces as Ian cannot hold both a knife and fork
  3. All household cleaning
  4. All laundry, including washing extra clothing because of bladder problems

Mobility

  1. Getting wheelchair out of and back into our car
  2. Pushing Ian about in his manual wheelchair prior to him getting his new electric one
  3. Helping him when walking using his cane

Then there are the times when Ian takes a tumble, whether by tripping or just his knee giving way. Generally, he manages to fall without hurting himself and, through determination and tenacity, somehow manages to get back to his feet unaided.  But there are certain times that he needs my help – and I have to be on hand to provide it.

Oh, yes, one last thing, the two of us have an agreement that when anything concerns his health, I have the final say.

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ian profile

50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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