UA-79233833-1

50shadesofsun

News and Opinions about MS, Health & Disability

LONG live our noble Queen … LONG to reign over us

queen + 3_editedHer Majesty Queen Elizabeth II with three kings-in-waiting: son Prince Charles, grandson Prince William and great grandson Prince George.

Queen Elizabeth II, monarch of the UK and numerous other commonwealth countries, has certainly broken a couple of records during her reign

Today, April 21, Her Majesty celebrates her 90th birthday – the first reigning British monarch ever to do so.

Last year, her time on the throne exceeded that of her Great Great Grandmother, Queen Victoria. Yes, in September, Queen Elizabeth became Britain’s longest serving monarch, having succeeded her father King George VI when he died in February 1952.

Now her reign has reached 64 years 2 months during which the world has seen seven Popes, seven Archbishops of Canterbury, 12 British Prime Ministers and 12 Presidents of the United States of America.

Happy birthday, Ma’am1.

 

 

1 Protocol note: When addressing the Queen, you first say “Your Majesty” then, subsequently, “Ma’am”. However, the correct pronunciation to be followed is that “Ma’am” should be said “Mam”, as in ham NOT farm.

 

 

No Comments »

Would you stay if your partner used a wheelchair?

wheelchair alone wheelchair couple_edited

Every so often we see, on Facebook, and perhaps other social media sites, a drawing of someone in a wheelchair – accompanied by a question along the lines of “If this happened to your partner, would you stay?”

Most people who reply say “Yes” but what of the vast majority who don’t comment?

Then there are sad tales such as people who use wheelchairs saying they don’t want to be a burden and telling their partners to leave them. Others who say that they are getting used, or have got used, to being alone since their partner left and still others who say that being in a wheelchair means they will never find a partner.

But there is hope as many people with disabilities do have loving relationship that survives one of them becoming a wheelchair user.

In my case, I have multiple sclerosis and have mobility issues and so need to use a wheelchair if there is a need to travel more than 10 metres or so; otherwise I have to sit and take a break.

Lisa is my second wife. We were married in 2011 after both of our previous marriages ended in divorce. But, here I must say that my first marriage did not end because of MS. I kept nothing from Lisa before we got married; She knew I had MS and what it could mean. Yet, knowing the problems, Lisa said “yes” to my proposal and we were married on a Florida beach at sunset on October 31 2011.

lisa blogNow, I’ll let Lisa take up the story:

Long ago, when my grandfather was still alive, all I ever heard from him is that he wished God would take him. See, he had MS and I, as a child, didn’t know much about it. In fact, at that time, no-one knew much about MS. My grandfather chose to ‘suffer’ from his disability while Ian ‘lives’ with it.

You might argue that everyone suffers from MS but that is just not true. Ian decided long ago that he would focus on those things that he can still do and not fret about what is no longer possible. We have a very full life.

We both enjoy travel. While Ian felt more free riding about on his scooter while on holiday, I prefer that he use a wheelchair, mainly for selfishness on my part. He, on the other hand, is anything but selfish and the scooter has now gone1. He cares about others who live with MS because he knows that he is in a better position than most.

Sometimes I worry about how MS will progress inside of him in the years to come. He doesn’t worry about it at all and he is right, there is nothing he can do about that, so why worry.

 

 

1 Yes, the scooter has gone, for the simple reason that, if it ran out of power, it was difficult and painful for Lisa to push me. We know, it happened just the once. Now, I have two wheelchairs, one powered, one manual. The power chair gives me independence to do things by myself while the manual one is more useful for short trips and if we go out in a friend’s car. Anyway, Lisa says that she loves ‘pushing me around’. LOL. Oh, and the power chair can be pushed if it ever runs out of ‘juice’; best of both worlds.

 

5 Comments »

MS diagnosis – It’s normal to grieve

modern-day-ms_edited teresa wright-johnson

Reading a great article It is normal to grieve after MS diagnosis by Teresa Wright-Johnson1 in Modern Day MS, and seeing that depression was part of her grieving process, reminded me of two things.

First is that grief is ok. Whatever you are grieving about, whether it is the loss of someone close to you, or a pet that was part of your family, or the projected loss of your future through the diagnosis of MS or another chronic illness, it is a natural process. But, although there are several recognised steps said to be involved, the most important thing to remember is that all grief is personal. Don’t let anyone tell you that you have to do this or that. Everyone grieves in their own way; no need to feel guilty, you do it your way.

Secondly, before moving to Spain last November, I used to belong to the MS Register2 which asks people like me to provide information on life with MS in the UK. Some of the regular questionnaires were about physical aspects such as mobility, balance and so on. But others were about mental states including attitudes and depression. Now, here, I must add that my description of MS Register is an extremely simplified one; there’s much more to it than that. So, if you live in the UK and have MS, I urge you to join. Anyway, my point is that the Register includes questions about your happiness, your ability to laugh and enjoy things as well as depression itself.

In her article, Teresa readily admits that depression was part of her grieving process. She writes:

Depression has become a familiar foe. We travel together more often than I am comfortable admitting. Depression is a bandit and has the capacity to steal hope and joy. Both are needed in order to fight adversity. Reflection became a major component in my life. It felt as though I watched my entire life pass by. I couldn’t stop thinking about who I used to be before my diagnosis and I longed for the loss of the woman I was before multiple sclerosis.

At times, it feels as though my life took a wrong turn down a one-way street with no road leading back to my original, vivacious and authentic self. The longing I felt and still feel at times is overwhelming and often inexplicable. It’s ironic how you can be surrounded by tons of people and still feel alone, fighting a battle only you know exists.

I must have been very lucky as, so far at least, I have not been depressed in the 14 years since my diagnosis with MS. Yes, occasionally I get frustrated that I cannot do something – but not depressed. Whatever is the future is just that, the future. I won’t worry now about something that, hopefully, may never happen.

 

 

1 To read Teresa Wright-Johnson’s full article in Modern Day MS, follow this link: http://moderndayms.com/

2 If you have MS, live in the UK and would like to know more about MS Register, follow this link: https://www.ukmsregister.org/Portal/Home

 

 

 

 

 

 

 

2 Comments »

Welfare benefit cuts high on anti-austerity agenda

anti austerity londonPlacards proclaiming ‘Cut War Not Welfare’  are held aloft during Saturday’s Anti-Austerity protest.

Anti-austerity protests and movements have become increasingly popular during the latter half of last year year and again this year.

Mass protests have taken place around the world, notably in Greece, Spain, France, Italy, the UK, Canada and the United States’ commonwealth of Puerto Rico. And opposition to austerity is seen as the force behind the rise of new political parties such as Podemos (We Can) in Spain, Italy’s Five Star Movement and Syriza (‘from the roots’ or ‘radically’) that is now forming the government in Greece.

And on Saturday, thousands of people again took to the streets of central London to protest against government cuts. Banners calling for UK prime minister David Cameron to quit were brandished by protesters as they marched to a rally in Trafalgar Square.

The demonstration, organised by the People’s Assembly, was also attended by the Labour Party’s shadow chancellor John McDonnell who said that a Labour government would end cuts and “halt the privatisation of our NHS”.

Importantly, for people with disabilities, Mr McDonnell pledged that his party would scrap the hated work capability assessments and also target homelessness by building hundreds of thousands of council homes.

While the UK government says austerity measures are key to reducing the country’s deficit, McDonnell described the government as being bankrupt in its political ideas and handling of the economy. He called for Mr Cameron to resign and to “take his party with him”.

“On every front now we are seeing the government in disarray – in terms of the economy we are slipping backwards instead of growing,” Mr McDonnell said.

David Cameron, or Dodgy Dave as MP Dennis Skinner prefers to call him, has previously argued that the government needs to make savings, over the course of this parliament, so that it can “prioritise what matters for working families – schools, the NHS and our national security”.

Labour’s Diane Abbott, a fellow speaker, said that fighting austerity was the “political struggle of our time”. She blamed cuts on “forcing people out of work and into zero hours’ contracts”.

Also there were Len McCluskey, general secretary of the trade union Unite, Green Party leader Natalie Bennett and National Union of Teachers’ general secretary Christine Blower.

Speaking for the Stop The War Coalition, which was chaired by Jeremy Corbyn MP from 2011 until he became Labour leader last year, Chris Nineham said: “Austerity is not about economic necessity, it is a political choice.”

Cameron’s Conservative manifesto for the 2015 general election pledged to save £12bn from welfare by the end of this Parliament in 2020. However, it has already abandoned one set of proposed cuts to disability benefits although those receiving welfare payments are fearful of the government’s next move.

No Comments »

Tribeca ban increased demand for Vaxxed screenings

vaxxed robertRobert de Niro: “I think the movie is something that people should see.” 

Vaxxed: from Cover-Up to Catastrophe has undoubtedly gained great impetus from being dropped from the Tribeca Film Festival, gaining many screenings throughout the USA – very often to capacity audiences.

And the reasons are simple. First of all, we don’t like being told what we can and cannot do and this is a phenomenon that many people ignore. Kids will touch if told not do, we ignore signs to keep off the grass, banned books become popular reads and songs barred by radio stations become top hits.

Similarly, we hate being told which films we can and cannot watch, and it is more than censorship; it is about freedom.  Throughout the civilised world we have freedom of speech, of expression, that is guaranteed by law and so we must also have the corresponding right to listen. We don’t want what we are told to be ‘sanitised’ by anyone in some form of authority or with some undue influence.

Lastly, in the case of Vaxxed, the news coverage surrounding its initial acceptance and later exclusion by New York’s Tribeca Film Festival was more publicity than the film makers could have reasonably bought and created greater public interest and clamour to see it.

However good or bad the ‘pro’ and ‘anti’ cases of the vaccination debate may be, we have the right to hear them both and make up our own minds. Even actor/producer Robert de Niro, the man behind that New York festival, agrees. Despite Tribeca’s change of heart, interviewed on NBC’s Today show on Wednesday (April 15), Mr de Niro spoke about vaccines and autism and said “I think the movie is something that people should see,” and that it’s time to “find out the truth, let’s just find out the truth.”

Yes, let’s do just that!

 

No Comments »

Terry made fun for viewers of ‘love – hate’ Eurovision

Terry Wogan  euroSir Terry Wogan, who died in February, commentated on the Eurovision Song Contest for 28 years. 

Love it or hate it, the Eurovision Song Contest returns to our screen next month but this year the shenanigans have started earlier than usual.

We are used to the somewhat predictable voting patterns that owe more to world politics and good neighbour relations than to a singing competition. We are also confident of seeing some weird entries (sometimes our own). But this year, a Swedish TV producer has hit out at the late BBC presenter Sir Terry Wogan for spoiling; the show.

Christer Bjorkman singled out the much-loved presenter for criticism claiming his gentle humour shattered the show’s credibility.

It is true that the programme is not regarded very highly in the UK and that years of Sir Terry’s humour have done it no favours but, really, the show only has itself to blame. Yes, he made fun of it but only because there were reasons to do so.

In my experience, Terry’s commentary added to the enjoyment of an otherwise lengthy and tedious show made up of third-class songs. Fortunately for the BBC, after Terry retired in 2009, it chose Graham Norton as its new presenter and he seems intent on being just as irreverent as his predecessor.

Bjorkman said: “He (Wogan) did this for 28 years and his ­commentary always forced the mockery side and there is a grown-up generation in Britain that doesn’t know anything better. He raised a generation of viewers believing this was a fun kitsch show that had no relevance whatsoever.

“It totally spoiled Eurovision. Because of what Terry Wogan did, the UK doesn’t put in their best efforts but it’s the BBC who wanted him and let him, they did not stop him. He did his best and he did what he did very well, make fun of something, but if I would have been in charge I would never have chosen him.”

I’d say that it’s just as well that he wasn’t in charge then

Former Bucks Fizz singer and 1981 Eurovision winner Cheryl Baker dismissed Bjorkman’s comments as disrespectful.

She said: “Now he’s dead to disrespect him like that is awful. Terry was the face of Eurovision, to the point where other countries watched him because he was so funny, so topical, so witty and so right.

“He did it for all those years and it’s because people couldn’t get enough of him. Maybe this Swedish bloke hasn’t got much of a sense of humour.”

Mirror TV editor Nicola Methven.

Mirror TV editor Nicola Methven.

Nicola Metven, TV Editor of the Daily Mirror newspaper, added her rebuttal of Mr Bjorkman’s criticism. She said: “Terry’s comments were nothing short of hilarious, made even more funny because he was making them on the BBC.

“How on earth could anyone NOT laugh and poke fun at some of the acts when you see the state of them? That is precisely why the show is so entertaining. But now some po-faced Swede is claiming that Eurovision is something far more serious and important that a ‘fun kitsch show’.

“Er, no it isn’t. These bands ain’t the Beatles. And how dare he suggest that Sir Terry ruined it. He did nothing of the sort.”

Hear, hear, Nicola. If it is ruined, and I am not saying it is, it is Eurovision’s own fault for broadcasting what can only be labelled a ‘fun kitsch show’.

 

 

 

 

No Comments »

British Euro vote campaign officially gets under way as US presidential hopefuls face New York primary

euro vote

As electoral campaigns go, the official 10-weeks allowed for the UK public to decide which way to vote in the referendum on Europe is nothing when compared to how long it takes for the USA to choose a president.

The four main contenders for the two party nominations for president announced their candidacies from March to June 2015 – that’s as long as 20 months before the eventual November 2016 polling day. Of course, that includes the campaigns leading up to the two party conventions in July – but that still leaves a final party versus party campaign of some 15 weeks.

In comparison, UK general elections that choose the government, and so the prime minister, have a final campaign time of less than six weeks.

So, as the presidential candidates prepare for their New York state primaries on Tuesday (19), the British referendum about Europe officially began yesterday, Friday April 15.

On June 23, British voters are being asked to choose whether or not they wish the country to stay as a member of the European Union. The ballot paper question will read:

Should the United Kingdom remain a member of the European Union or leave the European Union?

And voters will be asked to choose between Remain a member of the European Union or Leave the European Union.

Of course, the Remain and Leave campaigners have been making their points of view known for months but, with the official campaign now under way, with the lead campaigns designated as Britain Stronger In Europe and Vote Leave.

However, all is not as it should be with the Leave.EU group claiming it should have been made the lead leave group, that the criteria were not followed correctly and that it is going to seek a judicial review.

If that turns out to be the case, it could mean that the referendum might be delayed by weeks if not months.

And that is not the only problem. There is a separate legal action in the works. Lawyers for expat pensioner Harry Shindler have said his judicial review against the UK’s expat voting ban will be heard in the High Court as planned. His lawsuit is on behalf of all British expats who have lived abroad for more than 15 years and so are denied votes by a UK law that David Cameron’s government is committed to repeal – but not in time for the referendum.

An exact date for the hearing has not yet been set, but should the judicial review be successful, the government will be forced to rush through legislation allowing disenfranchised British expats to vote on June 23. According to Richard Stein of law firm Leigh Day, the government has time to change the law and empower long-term expats in the EU to vote on a matter which will seriously affect their chosen lifestyles.

Putting those two legal matters aside, and the time it would take to register all the extra voters if Mr Shindler is successful, former Labour chancellor Alastair Darling has accused Leave campaigners, who are calling on the money spent on EU membership to be pumped into the NHS instead, of “playing with fire” and peddling a “fantasy future”.

Polls suggest the referendum is currently too close to call, although we know that much can change in the next 10 weeks.

 

No Comments »

Flat rate universal basic income plan for everyone whether in work, unemployed or with disabilities

ubi swiss ubi posterSwiss to vote on UBI on June 5.

Several countries around the world are talking about the idea of introducing Universal Basic Income (UBI), not to be confused with Universal Credit which is being introduced in the UK to replace several means-tested welfare benefits.

Universal Basic Income is where the government pays everybody a set amount, whether they work or not, in place of means-tested benefits. Of course, the incentive to work is still said to exist as most people will want to have more money than paid by UBI.

On June 5, Switzerland is holding a referendum of its citizens that, if successful, means it will become the first country to provide universal basic income. They will be voting on a plan that could see all adults receive about 2,500 Swiss Francs (approximately £1,700; $2,460) a month, with children receiving 625 Francs (about £445; $615) for each child. There will be no additional disability benefits.

The Swiss federal government estimates that the proposal will cost around 208 billion francs a year and the Swiss parliament has called for voters to reject the proposal with all parties united against it. Only 14 MPs supported the basic income initiative. One MP described the initiative as “the most dangerous and harmful initiative that has ever been submitted,” mentioning the risks of immigration, disincentive to work, and that the basic income proposed would not be financially feasible.

The Federal Council, Switzerland’s executive branch, also recommended its rejection, noting that UBI would cause low-paid jobs to disappear or be transferred abroad and would send women back to house work or care work. They said that implementing the initiative would also raise taxes and weaken incentive to work.

To understand how this proposal has come so far despite opposition from the government, you need to know that Switzerland has a form of direct democracy alongside its Parliament. Citizens simply have to gather 100,000 signatures calling for a vote on a proposal, and a ballot must be held with its result binding.

There have been UBI-type policies and experiments in both India and Brazil that have suggested that, contrary to fears about ‘welfare sapping people’s initiative, a basic income might actually increase people’s appetite for work. It seems to increase their sense of stability.

In the Netherlands, in the city of Utrecht, there is a pilot UBI-ish scheme whereby people on benefits are paid unconditionally.  Other Dutch towns and cities look set to follow Utrecht’s example. Finland has plans to pilot an even more ambitious kind of basic income.

UBI ideas have been suggested in other countries, including both the USA and UK. So far, however, no firm proposals have been put forward in either nation.

 

No Comments »

From benefit cuts to tax havens – blame Dodgy Dave

dodgy dave cam dodgy dave skn     Prime Minister Dodgy Dave David Cameron and, right, Dennis Skinner, the Beast of Bolsover.

Putting aside all talk of the leak of the so-called Panama Papers, the kerfuffle which followed did result in UK Prime Minister David Cameron being labelled ‘Dodgy Dave’, not exactly a term of endearment and one that might well follow him during the rest of his political career.

It is a description that some of us might find so fitting, considering the ‘welfare reforms’ that have been pursued by his government that have led to pain, misery and even death while others have been lining their pockets at our expense.

Of course, the 84-year-old veteran Labour MP for Bolsover who coined Dodgy Dave name, Dennis Skinner, was excluded from the House of Commons for the remainder of the day for using unparliamentarily language after he twice refused to withdraw the word when requested to do so by the Speaker.

Speaker of the House, John Bercow MP orders Skinner to withdraw.

Speaker of the House, John Bercow MP, orders Skinner to withdraw.

In the Commons, Skinner said “I didn’t receive a proper answer (earlier), maybe Dodgy Dave will answer it now?”

Speaker of the House John Bercow told Skinner he’d have to withdraw the word ‘dodgy’ or face ejection from the Commons chamber for the rest of the day. But Skinner is not easily frightened. He replied: “This man has done, to divide this nation, more than anybody else. He’s looked after his own pocket – I still refer to him as Dodgy Dave. Do what you like.”

Immediately excluded by the Speaker, Mr Skinner left the chamber.  Undeterred, the MP, nicknamed the Beast of Bolsover, later expanded on his words.

The Daily Mirror newspaper’s internet service Mirror Online quoted Mr Skinner saying: “I, like most people in the country, view tax havens as dodgy.

“Cameron looked after himself by maxing out the taxpayers’ credit card to pay a mortgage on expenses in Oxfordshire and even claimed to cut the wisteria off his chimney.

“So I, like most people in the country, think it dodgy he now earns a small fortune renting out a house in Notting Hill while living in Downing Street and Chequers.

“His poisonous division of the country between ‘strivers and skivers’ was also dodgy, particularly when you look now at what he was doing.

“Cameron is dodgy. He is Dodgy Dave. He’s refused to answer questions before. I’ve no regrets calling him what he is.

“I’ve done it before so it was a bit of a surprise to be chucked out of the House of Commons. No action was taken against Cameron when he called me a Dinosaur, though I did receive dozens of letters, including one from a vicar, criticising Cameron. The truth is I thought I might be pulled up for calling him a ‘scrounger’ but that seems to be acceptable.

“I’ll let the public be the judge and I know from the working people I speak to that they think Cameron is Dodgy Dave.”

Mind you, Cameron should think himself lucky that the abuse, if you can call it that was so mild. In the USA, a few years ago, one opposition senator described the leader of the majority party as ‘a complete a**hole’.

The Beast of Bolsover was quite mild really.

1 Comment »

Could a new plant-derived oral drug, called T20K, really prevent progression of multiple sclerosis?

Oldenlandia affinis (Photo from Flora of Mozambique).

Oldenlandia affinis (Photo from Flora of Mozambique).

Now, I don’t know about you But I have a healthy skepticism about new drugs that are said to be able to change how multiple sclerosis affects me. And I can imagine that the same is true of people living with a host of autoimmune diseases.

Disease modifying drugs can help some people but they can often have quite unpleasant side effects. I remember reading about one such drug that was then under development. In its list of side effects, one of its extremely ones was given as death. That would be one hell of a modification of the disease and would certainly stop me being affected by MS.

However, news that a new plant-derived oral drug is thought to stop multiple sclerosis progression is extremely promising, if not too good to be true. According to an article by Beth Prystowsky in Modern Day MS, this breakthrough could be a step forward in preventing and treating multiple sclerosis and other autoimmune diseases.

Ms Prystowsky explains:

The drug treatment, called T20K, was extracted from a traditional medicinal plant, called the Oldenlandia affinis and has been successful in an animal model.

“This is a really exciting discovery because it may offer a whole new quality of life for people with this debilitating disease,” says Dr. Gruber, a researcher from University of Queenland.

“Cyclotides are present in a range of common plants, and they show significant potential for the treatment of auto immune diseases,” he said.

“The T20K peptides exhibit extraordinary stability and chemical features that are ideally what you want in an oral drug candidate.”

According to Medical Xpress, MedUni Vienna with Freiburg University Hospital has filed patent applications in several countries and licensed them out to Cyxone for further development. A Phase I clinical trial for this could start at the end of 2018.

 

4 Comments »