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News and Opinions about MS, Health & Disability

Scanned again – but not for MS

CT scan, library picture (not me).

CT scan, library picture (not me).

Back to hospital today for a second CT scan as part of the follow-up to my life-saving visit to the same Spanish health service hospital six weeks ago – which is when I made my first trip to the same machine.

Regular readers will no doubt remember that I was urinating blood and the cause was traced back to blood-thinning medication that was prescribed for a heart condition.

Since then I have seen, at the same hospital in Huercal-Overa, a haematologist to sort out my blood thinning meds and a urologist who requested today’s scan to see how my waterworks are, generally, and to make sure that there is nothing else untoward going on.

My appointment was arranged for 4pm, with instructions not to eat or drink anything for five hours but just after 9.30 this morning, the hospital phoned bringing my scan forward one hour, so nothing to eat or drink after 10am. Great!

Fast forward to 2.45pm, Lisa and I arrive at the hospital where I am seen almost on time. Incredible.

The CT scan with contrast, which meant that I was given a dye intravenously to give a clearer image. was completed so quickly that the two of us were soon sitting in a nearby tapas bar enjoying a late afternoon meal and coffee for an incredible 10.30€ for the both of us. Great food, ridiculously low prices.

Just as we finished, the phone rang. The hospital wanted me to go back.

That didn’t sound good but when we got back it turned out that they needed to scan another area to get the complete picture that the urologist had requested.

This time, though, contrast was not required and the fact that I’d eaten less than hour earlier seemed not to matter. Strange, when there was a five-hour ban in place for the earlier scan.

Still now I have to wait for another visit to the urologist to get the full story.

 

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Move DLA lifetime recipients to PIP without further demoralisation and humiliation, government is urged

38degrees-orange  dla lifetime

Having had the British government drop its planned £30 a week cut, from next year, to Personal Independence Payment (PIP) for new claimants placed in the Work-Related – another campaign is now under way.

PIP is a new benefit aimed at replacing the Disability Living Allowance (DLA) but the transfer of people between the two has been slow and laborious – and still hasn’t been finished.

Some people were awarded DLA for set periods of time before their claims had to be reviewed but the people with more serious disabilities that were not going to improve, including MS, were give lifetime or indefinite awards

The change-over to PIP, however, means that working age recipients of DLA lifetime awards are being invited to apply for PIP and go through the assessment process all over again.

Now, however, campaign group 38 degrees is saying that a second assessment is both demoralising and humiliating. As such, it is calling for DLA lifetime award recipients be moved to PIP without the needs for further assessment.

Debbilyn Low, of 38 Degrees, said: “People awarded this lifetime status have already proved to the government that their illness or disability will not get better for the entirety of that person’s life. The government has already accepted and agree that these people are the most vulnerable by awarding lifetime status when they applied for DLA.

“I have friends who were awarded DLA for life but when summoned for assessment for PIP they have had the entire award taken away from them.

“Ask yourself this: ‘How can the government now decide – after their doctors and specialists have examined and assessed the person and then awarded DLA – that they are no longer in need?

“These are the Doctors and Specialists that the government paid for their services, so is the government now saying that it has no trust in the people they employed to assess a claim for DLA?”

The 38 Degrees group is now behind a petition on its 38degrees.org.uk website calling for new Work and Pensions Secretary, Steve Crabb, to take action.

The petition reads: ‘Move people who are awarded LIFETIME or indefinite awards on DLA straight over to PIP without the need for demoralisation and humiliation AGAIN…most have already been through this when applying for DLA previously.’

So far it has gained close to 19,000 signatures.

 

  • Why does the group call itself 38 Degrees? On its website, the group says: ‘38 Degrees is the angle at which snowflakes come together to form an avalanche – together we’re unstoppable’.
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Getting to see neurologist proves not so simple

Ysbyty Gwynedd (Gwynedd Hospital), Bangor, North Wales. Place of my MS diagnosis and later consultations with MS nurse.

Ysbyty Gwynedd (Gwynedd Hospital), Bangor, North Wales. Place of my MS diagnosis and later consultations with MS specialist nurse.

Three or so years ago, I was sitting in a North Wales regional meeting of the UK’s MS Society and distinctly remember a society staffer saying that everyone with multiple sclerosis had a right to see a neurologist. If we wanted to see one, we only had to ask.

Well, in my case, I had not seen a neurologist for years having been transferred from him to seeing a specialist MS Nurse, had only ever had one MRI scan and that was prior to diagnosis in 2002, and had only ever been told that my MS was ‘benign’. In fact, at diagnosis the neurologist said that he did not expect my condition to deteriorate any faster in the future than it had in the previous 25+ years.

If I wanted to see him again, just tell the MS Nurse, I was told.

As is MS’s way, it did get worse and three years ago I was seeing the North Wales MS nurse every six months. So, on my next visit to him, I asked to see a neurologist. His reply was to ask me what good I thought it would do.

My reply was that I’d like to know exactly what type of MS I had and to discuss any medications he might think should be prescribed for me. The nurse’s reply let me speechless, not something for which I am known. He said that I had had RRMS but now had moved on to SPMS and that it was unnecessary for me to see a neurologist as there was no medication suitable for me.

Let me remind you this was a nurse, albeit a Specialist MS nurse, telling me what sort of MS he thought I had – without any further tests. It was just his opinion, and he blocked me from seeing a specialist doctor. Fortunately, this particular man has moved on now and North Wales has a new MS nurse.

Having moved from the UK to Spain, I now have to ask my new GP to refer me to a neurologist here. Maybe, I’ll now get a second MRI – 14 years after my previous one – and even find out exactly what type of MS I have.

Watch this space for further information.

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Moveable Easter dates tied to full moon

easter moon

Have you ever wondered why the date of the Easter holiday varies so much from year to year? It can be as early as March 22 and as late as April 25. So why the difference?

Would you be surprised to know that the date pf the Christian festival depends on the appearance of a full moon? Yes, that´s right, a full moon – the same phenomenon celebrated by pagans 13 times a year.

Added to that, the date of Easter is worked out in a most convoluted fashion.

According to the Bible, Jesus’ death and resurrection occurred around the time of the Jewish Passover, which was celebrated on the first full moon following the vernal equinox.

This soon led to Christians celebrating Easter on different dates. At the end of the 2nd century, some churches celebrated Easter on the day of the Passover, while others celebrated it on the following Sunday.

In AD 325, the Council of Nicaea set the date of Easter as the Sunday following the paschal full moon, which is the full moon that falls on or after the vernal (spring) equinox. In practice, that means that Easter is always the first Sunday after the first full moon that falls on or after March 21. Easter can occur as early as March 22 and as late as April 25, depending on when the paschal full moon falls.

And, if that isn’t bad enough, the Church does not use the exact date of the paschal full moon but an approximation, because the paschal full moon can fall on different days in different time zones, which would mean that the date of Easter would be different depending on which time zone you live in.

For calculation purposes, the full moon is always set at the 14th day of the lunar month (the lunar month begins with the new moon). Likewise, the Church sets the date of the vernal equinox at March 21, even though it can occur on March 20. Both approximations allow the Church to set a universal date for Easter.

Of course, all this only applies in areas where the church uses the Gregorian calendar, as in Europe and the Americas for example. The Eastern Orthodox Church still uses the Julian calendar – meaning that Easter, like Christmas, falls on a different date to the west.

Oh, and just one more fact. The western church date is worked out using full moons as they appear in the northern hemisphere but the dates apply south of the equator too.

So, is that all clear now? No? Don’t feel bad, it’s not to me either.

Wouldn’t it be better to choose a date such as the second Sunday in April? Just an idea.

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Tribeca’s censorship of film goes against free speech

vaxxed

Let this be clearly understood. I have no strong opinions as to the safety or possible risks attached to vaccinations. However, there are those on both sides of the argument that do have strongly held beliefs and are keen to voice them.

And why shouldn’t they? Do the rest of us not deserve the right to hear the arguments so that we can form our own opnions? Of course we do.

One thing to which I am opposed is censorship. ‘I disapprove of what you say, but I will defend to the death your right to say it’1 are famous words that are pertinent here. To make educated and informed decisions we need to hear both sides of an argument.

It is to be very much regretted, therefore, that the Tribeca Film Festival has decided to deny free speech and to resort to censorship by removing Andrew Wakefield’s documentary, Vaxxed: From Cover Up To Catastrophe, from its official line-up of films.

tribeca logoA statement from Tribeca said that its intent, in screening this film, had been to provide an opportunity for conversation around the issue. However, after reviewing it over the past few days with the Tribeca Film Festival team and others from the scientific community, Tribeca does not believe it contributes to or furthers the discussion.

The Festival said that it doesn’t seek to avoid or shy away from controversy but has concerns with certain things in the film prevents Tribeca from presenting it in the Festival programme.

“We have decided to remove it from our schedule,” the statement concluded.

Famous actor and producer Robert de Niro, who co-founded Tribeca, had only the day before said: “Grace and I have a child with autism and we believe it is critical that all of the issues surrounding the causes of autism be openly discussed and examined.

“In the 15 years since the Tribeca Film Festival was founded, I have never asked for a film to be screened or gotten involved in the programming. However, this is very personal to me and my family and I want there to be a discussion, which is why we will be screening VAXXED. I am not personally endorsing the film, nor am I anti-vaccination; I am only providing the opportunity for a conversation around the issue.”

To me, and I must emphasise that this is just my opinion and not (necessarily) a fact, it appears that Tribeca has bowed down to establishment ‘pro-vaccination’ pressure and so effectively censor opposition voices.

It is also regrettable that Mr de Niro’s much wanted ‘discussion’ is now dead – at least as far as this festival is concerned. I am totally confident, however, that the war of words about vaccination will rage on.

Who is right? Are vaccinations good or bad? I don’t know2 – but we do deserve to hear the uncensored views of both sides.

 

1 In The Friends of Voltaire, Evelyn Beatrice Hall wrote the phrase: “I disapprove of what you say, but I will defend to the death your right to say it” (which is often misattributed to Voltaire himself) as an illustration of Voltaire’s beliefs. Hall’s quotation is often cited to describe the principle of freedom of speech.

2 The writer is neither pro nor anti vaccination. As a child of the 1950s he had the vaccinations then customary but, during his high school years, he did not receive the BCG tuberculosis vaccination. His parents refused to consent because his sister had experienced a bad reaction to her vaccination some years earlier.

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British summer … an error?

Just got to love this, while enjoying Spanish sunshine with Easter temperatures in the high 70sF, thinking of family and friends back in the UK:
summer
No summer in the UK? Again? Come and get your fill of sunshine in sunny Andalucía.
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Volunteer rescuers’ sad job to recover lifeless body

Tryfan in Snowdonia.

Tryfan in Snowdonia.

My heart goes out to not only the husband and family of the woman who fell 150 feet to her death on Snowdonia’s Tryfan mountain on Friday but also to the volunteer mountain rescuers who searched for her and eventually found her body.

Obviously the loss felt by a husband or immediate family member cannot be compared but to be a member of a mountain rescue team dedicated to saving life and, instead, having to find and recover a walker’s lifeless body is stressful too.

Remember, all mountain rescue teams in the UK are made-up purely of volunteers who often risk their own lives to save others.

On this occasion, more than 20 rescuers were drawn from three local teams: Ogwen Valley, Llanberis and Aberglaslyn.

The woman, from Stockport in Greater Manchester, and her husband were both well-equipped according to rescuers. They were descending Tryfan’s North Ridge/West Face late in the day when she fell. Her husband was unable to reach her and called for help.

A nine-hour operation, involving the three rescue teams and a Coastguard Helicopter, led to her body being found early Saturday morning.

The summit of Tryfan is 917.5m (3,010 ft) above sea level. It is the 15th highest mountain in Wales. 

 

Related posts that may be of interest:

Rescuers’ story stirs up web interest https://50shadesofsun.wordpress.com/2015/09/08/rescuers-story-stirs-up-web-interest/

Hero volunteers need support https://50shadesofsun.wordpress.com/2015/09/05/hero-volunteers-need-support/

 

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Disability: Believe in yourself, believe in your future

believe

 Just the other day I saw a photo on Facebook that led to a shopping outlet. Nothing strange about that nor, for me, any interest in buying anything. It was the picture, using Scrabble letters, to spell out the phrase ‘Always believe in yourself’.

That’s really apt for those of us living with multiple sclerosis – and a host of other disabilities for that matter. How often do we doubt our own abilities, our own determination and even suppress our own hopes and desires? How often do we hear ‘You won’t be able to do this’ or ‘You can’t do that’?

Now, of course it is true that our abilities are somewhat limited but that does not mean that there is nothing we can do. It is about having a positive attitude and making the most of the abilities we do have.

We need to get ourselves into the mind-set of ‘Yes, I have MS (or whatever), so what?’. Similarly, for those of us who use a wheelchair – as I often do – we really must be positive and adopt a ‘Yes, I use a wheelchair, so what?’ attitude. That is not to say that everything will still be possible or achievable but much will be. Most of what we can achieve is very much within our own grasp.

Years ago, besides my work as a journalist, I was involved in voluntary work. First, I spent more than 10 years as an adult leader in the scout movement and, later, a similar length of time as an officer in St John Ambulance.

With the scouts, among many other things, I was an authorised mountain walking leader. Now, I accept that my days of mountain activities (including rock climbing and abseiling) are over but feel that may be as much about age as MS. The desire for those has left me.

First aid is a crucial part of St John activities and, while certificates are only valid for three years, the basic knowledge never leaves you. As such, I know that if no-one else was around to help, I could and would be able to give someone first aid, maybe even keeping him or her alive, until help arrived. Getting down to a casualty on the ground would no problem, I fall often enough that the ground and I are very good friends, but help would probably be needed to get me up again. Would I be capable enough, physically, to make a real difference? You don’t know until you try but I believe so.

Writing has been my life-long passion that I have been lucky enough to enjoy as a career. Getting paid to do what you love to do is a dream that many have but few realise. Even as a child I knew what I wanted to do and was determined enough to achieve it. For most of my career the world-wide web either did not exist or was in its infancy. News arrived in newspapers, on television or via radio. Online news didn’t exist; the blogging phenomenon was unknown.

Now, though, from the comfort of an armchair in our living room or while sitting out on our terrace enjoying the sunshine, I am able to indulge my passion for writing through this blog – attracting many thousands of views every month. It wasn’t an instant success but, having started it only last year, I was confident that in time it would be. I believed that I could make it work.

So to everyone with a disability, I’d say believe in your own abilities, concentrate on what you CAN do, ignore those who say ‘you can’t’ and remember that it’s your life and your body. Believe in yourself and, through your determination, make others believe in you too.

 

You might also like to read ‘CAN do’ attitude to life by clicking on this link: http://50shadesofsun.com/?page_id=51

 

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Letterman so happy to be free of need to shave

letterman beardletterman late showDavid Letterman today, bald-headed and bearded (photo © AKM-GSI) and how viewers of The Late Show were used to seeing him.

Love ‘em or hate ‘em, beards are about as divisive as Marmite when it comes to people’s tastes.

The latest life-long clean-shaven man to become a ‘beardie’ is former television talk show host and comedian David Letterman.

The 68-year-old, who ended his late-night tenure last May when he stepped aside as host of CBS’s The Late Show, looked happy as can be with a big smile and even bigger beard when he was photographed jogging in a T-shirt and shorts on Tuesday.

Appearing on television every night, Letterman wore suits and kept his face cleanly shaven but, having now retired from presenting national programmes for more than 30 years, I think he can be forgiven for deciding to relaxed a bit.

Speaking last December, he said: “You know what? I used to say, every day, ‘I am so sick and tired of shaving.’ I had to shave every day; every day for 33 years.

“And even before that when I was working on local TV I just thought, the first thing I will do when I am not on TV is stop shaving.”

He is having fun, too, in typical Letterman style. “Everybody hates it. My wife hates it. My son hates it,” he laughs, “but it’s interesting. I’ve kind of developed a real creepy look with it that I’m sort of enjoying. And I can tell that people are put-off by it.”

With a twinkle in those well-known eyes, he told a US journalist: “The more people implore me to shave, the stronger my resolve is to not shave. So the day that I shave, I’ll call you.”

I have to say, I do know how he feels having spent my career mainly clean-shaven, except for spending five or six years with a moustache, my desire to stop shaving was very strong. After multiple sclerosis forced me to stop working in 2006, my shaving continued for another four years until my first marriage broke down.

By the beginning of 2011 my beard was established and Lisa loves it.

Beards, to me, are not about manliness but about comfort and freedom from shaving – although beard-trimming and grooming are equally important.

Will I ever return to the world of shaving every day? Well, you should never say ‘never’ but that possibility is extremely unlikely; in fact, verging on the ridiculous.

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Manufactured ‘evidence’ is not real evidence

maddie

Whatever happened to Madeleine McCann on the night of her disappearance from the family’s holiday apartment in Portugal in 2007 has been a hotly-debated mystery ever since.

Was she taken from the apartment in a pre-planned abduction, did she wander outside and be snatched by an opportunist, did she die inside the apartment, were her parents involved or are they innocent? These are probably the most popular theories but that is exactly what they are, theories; as of now, no-one seems to know the truth. And, if they do, they are not telling.

In courts all over the world, witnesses are required to swear or affirm, to make an oath to tell the truth; exact wording may vary but it will be something along the lines of “… that the evidence I give will be the truth, the whole truth and nothing but the truth”.

That is the key to what is legally defined as ‘evidence’. It needs to be the truth as far as the witness knows it, with nothing left out and nothing added in the way of opinions, supposition or hearsay – that is something heard from another person.

The only opinions allowed are from expert witnesses duly qualified in their roles.

There are, of course, room for various theories being checked out during the police investigation of a case, different leads are followed and many lead nowhere. That is only right as detectives should have open minds and no leads should be ignored. Similarly, people are often sought after being seen close to the scene of a crime – only to be eliminated from further enquiries.

When a case gets to court, however, those theories have gone. The court wants to hear the facts, the truth and nothing else.

Ok, there is often conflicting evidence given by prosecution and defence witnesses but, usually, it become obvious to jurors what is the truth.

In the case of Madeleine debate, however, there have been a number of instances of creation of supposed evidence to create backing for one theory or another – most often in support of a theory implicating her parents in her disappearance.

Now, I don’t know the truth; nor am I pushing forward any theory. Whether or not Kate and Gerry were involved is not my concern right now. I am just saying that it is extremely misleading for anyone’s words or pictures to be used out of context. It distorts the truth.

Such ‘evidence’ is actually influenced by opinion; it is not factual. As such, it would be inadmissible to a court and is unhelpful to everyone who is keen to find the truth.

As for my opinions, and I must stress that they are just that – opinions, do I believe that Madeleine will ever be found alive? Sadly, no. Do I think that we will find out what really happened? Again, no. Was she abducted or did she die in the apartment? I have no idea, the evidence so far is inconclusive. Were her parents involved? Once again, I have no idea but there is no evidence that they were, so ’innocent until proven guilty’.

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