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News and Opinions about MS, Health & Disability

Newly-diagnosed with MS are forced out of work

jobcentre

 

 

 

A branch of jobcentreplus, part of the UK’s Department of Work and Pensions, where people who are out of work register to gain unemployment benefits.

 

Some people with MS somehow have the ability to carry on working, and I have nothing but admiration for them. In reality, though, it is more to do with how MS affects them individually than any intention to ‘never give up’.

Following my diagnosis, I was able to continue working for another 4½ years before I really had to admit defeat. Even then, I could have continued to write from home but newspaper budgets were being trimmed back and the money to pay a freelance journalist just wasn’t there.

Not being able to work used to make me feel guilty, as if I had just given up for the sake of it, but not now. And that is because half the people living with MS in the UK, who aren’t currently employed, were forced to stop working within just three years of their diagnosis according to a report released last week.

The MS International Federation’s (MSIF) Global Employment Report 2016 also claims fatigue, cognitive impairment and mobility issues are the most common symptoms forcing people with MS to stop working. In my case, reduced mobility was the key problem.

A quarter of the people surveyed in the UK who weren’t working said they’d given up their job within a year of their diagnosis. Another 26% of that group said they’d stopped working within three years. A previous study reported 80% of people with MS had left employment within 15 years of being diagnosed.

Michelle Mitchell, chief executive of the UK’s Multiple Sclerosis Society, said: “Lots of people have told us how they’ve been unable to return to work because they didn’t get the right support.

“Similarly, many have said they didn’t receive the support they needed while in work, or have even faced discrimination because of their condition. If employers are able to offer reasonable adjustments –- such as flexible or reduced hours – it could help thousands more people stay in work.”

There is understanding here for those who have been unable to return to work. Like them, I tried to find more suitable work after leaving my last job. I did well, reaching shortlists, until the medical questions were reached; then another candidate was always ‘more suitable’. On the other hand, if an Equal Opportunities form accompanied the application form, even a first interview was never offered. It was then that an adviser at the local jobcentreplus (government employment office) suggested I claim disability benefit instead of trying to work.

The All-Party Parliamentary Group (APPG) for MS is looking into whether people with MS have the support they need to stay in, or get back into, work. It has been gathering evidence from people with MS and will be making recommendations in autumn 2016.

The MSIF is a worldwide network of MS organisations. It surveyed more than 12,000 people in 93 countries to compile the global report.

 

 

 

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‘All clear’ is such a relief

inmaculada

Those of you who have been reading this blog for some months now may remember that in February I had to be rushed to hospital.

It was nothing to do with multiple sclerosis, epilepsy or even my heart condition. It was because I had a serious internal bleed into my bladder. It was so bad that I did not so mch have blood in my urine; I had just a little urine in a heck of a lot of blood.

The staff at our local hospital, the Hospital La Inmaculada in Huèrcal-Overa, were brilliant, and had conducted all the tests and got the problem under control in just six hours. They kept me in for two nights to carry out further tests and to keep me under observation.

In the last few weeks, I have had another CT scan plus comprehensive blood and urine analysis before my pre-planned follow-up appointment with a urologist. And that appointment was last Tuesday.

• To my absolute pleasure and relief, and Lisa’s too, everything was ok; blood was normal, urine was fine and the scan showed no tumour nor any other abnormalities. And they plan to repeat the whole process every four months.

The all-clear results only go to confirm that the hospital’s original diagnosis was correct; the bleed was caused by the blood thinning medications prescribed for my heart condition.

Next stop for me will be my first appointment to see a cardiologist in Spain. He or she will, no doubt, order a series of tests to determine the current state of my heart and, if need be, will change the medicines I take. We’ll see what happens.

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• I would like to thank all of you as this, my Health & Disability blog, continues to go from strength to strength with views this year topping 84,000 so far.

In February they were 11,602; March 19,373; April 24,281; and May up until yesterday (29th) 24,971.

My blog brought me to the attention of the Editor-in-Chief of Multiple Sclerosis News Today for which I start writing a regular column this week. My first, introductory column is due to be published today (Monday) with my first proper column following two days later (Wednesday).

 

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Unnecessary comments that can hurt

invisible disability

Some disabilities are obvious, being clearly visible to other people. But other people’s conditions are not so obvious because they do not affect their physical appearance. These are the so-called ‘invisible’ illnesses.

When I was diagnosed with multiple sclerosis, although I had physical issues; they were not obvious and I did my very best to hide them.

As time went on, and my condition deteriorated, I needed to walk with a stick and could not stand for long. I was given a parking card to allow me to park my car in places reserved for people with disabilities but, on more than one occasion, there were audible comments made about not having a wheelchair. They didn’t understand that, just because I was walking with a stick, I still had a disability with severe mobility issues.

I don’t hear those comments any more as, these days, using a wheelchair is a necessity. But I still feel for those who suffer the unwarranted comments.

Speaking of unnecessary comments, I wonder if you have seen videos of people with obvious difficulties, such as Down’s Syndrome being verbally abused by strangers in front of other people. OK, these videos are all set up with actors playing the abused and abusers to capture the reactions of others with hidden cameras.

They are from ABC, under the title What would you do? You can find them on Facebook and YouTube.

The actors playing the abusers use offensive language when talking to the abused and try to get others to agree with them.

Sadly, some go along with it, some keep quiet and don’t get involved but, thankfully, there are good people who stand up to the bullies. And, when they do so, it is not in some meek and mild way. There is none of that “you really shouldn’t say that”, instead they say exactly what they think in a no-holds barred fully confrontational way.

I think my favourite line from one video was a woman customer at a supermarket check-out taking on another woman abusing a young bag-packer with Down’s Syndrome. Disgusted, the shocked woman told the abuser: “If he was my son, I’d deck you” before the film crew hastily stepped in.

Another woman, who turned out to be a schoolteacher, took issue with a male abuser who, among other things, had described the same young bag-packer as a ‘retard’. He said that the young man was slow and shouldn’t be employed there.

Cue the woman! She proceeded to give the abuser the dressing-down of his life, a really severe tongue-lashing, telling him that he should be ashamed of himself.

Whoever and wherever they are, they are my kind of public-spirited people.

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DWP is not ‘solely’ to blame – just partially

dwp logo

 

You know that I am a great one for words and hidden meanings. I saw through the meaningless words of UK work and pensions secretary Stephen Crabb that the government had no plans to make further disability benefits cuts.

I warned readers of this blog that having no plans did not mean no cuts.

And I was proved right when Crabb told the House of Commons’ Work and Pensions Select Committee that the government would be bringing out further benefit cut plans in a Green Paper later this year.

But, I am figuratively kicking myself for being semi-comatose when a Department of Works and Pensions spokesman made a statement in response to media interest in the 49 peer reviews, or internal inquiries, into deaths of people linked to benefit claims.

That spokesman said: “Any suicide is a tragedy and the reasons for them are complex, however it would be inaccurate and misleading to link it solely to a person’s benefit claim.”

Solely, that is it. Solely.

That one word is an admission that the deaths can be linked, albeit only partially, to their benefit claims.

I wonder if the spokesman has shot the ministry in the foot.

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Debbie’s independent review of folding electric wheelchair: ‘The most practical chair I’ve tried’

06 in boot

To coincide with Mobility Roadshow1, that started yesterday at the UK’s Silverstone motor racing circuit and runs until tomorrow, I wanted to bring you an independent review of the lightweight folding powered wheelchair that was revealed to readers of this blog three weeks ago, on May 5 (http://50shadesofsun.com/?p=2444).

The reviewer is Debbie Schwartz who lives in Cardiff with her Canine Partner (assistance dog) Ellie (http://50shadesofsun.com/?p=2524). Debbie already has a heavier electric wheelchair and wanted to try out the new one. Shaun Atkinson, of Better Products for Disabled People, took a chair to Cardiff for her to try but had no idea that she would be writing a review.

Debbie writes:

I met up with Shaun earlier today and viewed the smaller model – BPDP 06J.

Before I saw the chair I had several concerns, mainly around safety:

  • being so light would it feel ‘sturdy’ or would it topple on uneven ground
  • the battery is an ‘unknown’ so would it offer the power that a standard powerchair offers?
  • being an (almost) ‘deckchair’ design would it be comfortable? Having no suspension, solid tyres and basic seating I was concerned about the support & comfort, certainly on uneven ground – suffering from chronic severe pair this was a major concern.
  • is it really as easy to unfold/fold as shown?
  • is it light enough to lift & fit into a standard car boot? – Is the battery easy enough to remove &/or change if required?

On seeing it the first impressions are good; it was a very neat little chair. It is only made from four different components – two motors, battery, frame/tyres and joystick. This I found quite reassuring because there are fewer things to go wrong; he even said that it doesn’t require servicing – with any fault the cause is obvious and he’d just send out the part! Each motor is attached via two screws so it’s as simple as that!

It opens and closes in one motion – I had a friend with me who tried both actions successfully and then tried to fit it in his car boot. He has the smallest boot I’ve ever seen! He has a VW Fox (smaller than a Polo). He observed that the chair was very easy to manoeuvre when folded and was light enough to pick up and lift over the high lip of his boot. The chair back can bend back to reduce the length of the folded chair, but this wasn’t necessary. The chair neatly fitted into the boot as you can see in the photo.

On trying the chair I found it to be quite powerful and offered a smooth ride after you’ve got the hang of the joystick – it was certainly more sensitive than the one on my main chair. It was raining at the time but had good grip; I took it up/down small curbs & there was no toppling, it did feel stable.

The battery was the most amazing thing! You simply remove it by taking it out of the frame, it is as simple as that! It was so light! A matter of lbs & not what I’m used to at all; batteries seem to have limited my life for some time now – in one way or another – now it can be removed and stored easily in a (large) handbag if required… It can be recharged like any other powerchair battery ie via a port on the joystick. Also, like every other chair, the motors can be ‘disconnected’ via two levers so that it can be pushed freely.

The chair was surprisingly comfortable. It comes with a seating cushion which is very basic, but I’m sure that you can change that with the cushion you would normally use. The back rest is material, but again was surprisingly supportive & comfortable.

The only criticism I might have about the chair – and it is being quite picky – is that the seat is physically quite low and this might not suit everyone2. I normally ride an Invacare Pronto3 & it’s seat was a good 6″ higher than the BPDP. In truth, it’s not going to affect me too much, being very short in stature, but if you’re taller then getting up might be more difficult. The arms easily move back meaning that you will easily fit it under a table – something my Invacare doesn’t do – but because of the low seat you still might not be comfortable at the table! I’m sure that if you had a more substantial cushion than the one provided then you would sit higher.

To sum it up, this really is everything I want from an ‘occasional’ chair. It will not take over from the Invacare because of the amount of off-roading I do day-to-day (dog walking), but to travel with the convenience seems second to none; I would say that it was the most practical chair I’ve tried.

Unfortunately, to truly know how it drives, you need to use it day to day & no-one is going to offer this opportunity for any chair; having tried the BPDP both inside & outside I was happy with the power & turning circle – again showing its versatility.

 

Notes:

1 Mobility Roadshow 2016, May 26-28, Silverstone Circuit, Silverstone, Northants NN12 8TN. Opening times: today Friday May 27, 10am-5pm, tomorrow Saturday May 28, 10am-4pm. Fully accessible and free admission! No ticket required.

2 The seat height of the BPDP 06J folding electric wheelchair is 470mm. Ian’s current chair is the Invacare Mirage which has a seat height of… 47cm – exactly the same – and he says he can easily get up even though he is 6 feet 2 inches (188cm) tall.

3 The Invacare Pronto is a powerchair, not a traditional wheelchair design.

 

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World MS Day: ‘MS doesn’t stop me’

world-ms-day-logo

People with MS were challenged yesterday, as part of World MS Day 2016, to celebrate all the ways that they maintain their independence and get on with their lives.

By sharing examples of independence from lots of different countries, the Multiple Sclerosis International Federation set out to inspire people to challenge perceptions of what people with MS can and cannot do.

Here’s just a few examples received from around the world:

MS doesn’t stop me …

… applying my skills

I work part-time at a computer centre. I can choose the hours I work and manage efficiently with limited energy. Being able to continue working makes me feel independent.

… staying active

Kayaking has been massively important to me. It has not only helped my physical rehabilitation; it has aided my mental wellbeing. Without kayaking, I am not sure my body would be as strong as it is now.

… running my business

Everyone at my workplace knows that I have MS, including my clients. I’ve had to become a role model in my community because there has been no one else for me to imitate.

… having the determination to succeed

It’s important to have dreams. I’m in my last year of high school and I imagine myself becoming a successful interior designer. When I think of something I want to do, I stay focused and determined until I succeed.

being part of the family

I live in a centre which provides care for people with progressive MS. Since moving here, I am so much more independent. Now that my husband is no longer responsible for my care, I’m just part of the family and we can do nice things together.

… me empowering other people

I’ve always loved sport. Before being diagnosed with MS I was a keen footballer. I now coach a wheelchair basketball team. The most fulfilling part of it is helping other people build their confidence and find a sense of achievement.

… learning new things

I used to be a bank manager, but now I use my time to study new topics like history, astrology and painting. MS has given me the chance to do more for myself, gain knowledge and become a better person.

spending time with my daughters

Nine years ago I was diagnosed with primary progressive MS. While my wife is at work, I take care of the household duties and look after our daughters when they finish school. Continuing to feel useful is very important.

… having inner strength

I was diagnosed with MS when my children were very young, which was really hard, but I didn’t let it drag me down. MS has shown me how strong I can be.

… living my life the way I want to

Catheters have made a big difference to my independence. I can relax about doing things like going out to meet friends… It’s also a bit of a party trick. I pull it out of my handbag and get people to guess what it is!

seeing the beauty in life

We are examples of how people are living with MS. We are people on crutches, people in wheelchairs and we’re all living and working. The world doesn’t end because we have MS. We show people how they can continue to live with MS.

… getting out and about

My wheelchair is my constant companion and my assistant, helping me get from A to B. I rely on it to get me around, but I have never seen it as an embarrassment or a sign that says: “now I am disabled”.

… taking pride in my home

The little things I can do at home make me happy. I sweep the floor, dust the furniture and wash the dishes. It’s funny because I’d never done any housework before, but now I really enjoy it! I’ve learnt a lot from my MS.

 

 

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Drug ´breakthrough´ for primary progressive MS

roche logo

Everyone living with primary progressive multiple sclerosis should be excited by the fact a drug being developed for treatment of that particular type of MS has been given ´breakthrough´ designation by the USA´s Food and Drug Administration (FDA).

The special status means that the drug, called ocrelizumab, could be approved more quickly following positive phase three trial results.

Breakthrough Therapy Designation exists to speed up the development and review of medicines intended to treat serious or life-threatening diseases. Fast tracking the approval process helps to ensure people have access through the US drug approval pathway as soon as possible.

The timing of any final approval is not yet known but once the FDA grants ocrelizumab a licence this means it will be available for doctors to prescribe in the US. Though the UK is part of a separate licensing process in Europe this is still a significant step forward.

The ´breakthrough designation has been granted based on top line results presented by pharmaceutical company Roche.

Ocrelizumab is the very first treatment to have shown positive results in a phase three clinical trial for people with primary progressive MS.

Treatment with ocrelizumab led to a reduction in the progression of clinical disability by 24% compared to placebo. This reduction was sustained for at least 12 weeks and was measured by the Expanded Disability Status Scale (EDSS).

In relapsing remitting MS, ocrelizumab reduced the number of relapses, by 46% in one trial and 47% in another when compared to Rebif.

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Cameron protects NHS, Corbyn says not enough

nhs ttip protest_edited

Accused of failing to include, in the Queen’s Speech, any mention of protection for the National Health Service (NHS) from the forthcoming and controversial European/American TTIP trade deal, UK prime minister David Cameron has agreed to an amendment on legislation before the House of Commons.

The move is to fend off the risk of the Queen’s Speech vote being lost as a significant number of  his own party had already indicated their intention to rebel because the speech did not include a commitment to the NHS.

The amendment is designed to protect the NHS from the terms of the deal but leader of the opposition Jeremy Corbyn has warned that there are still many risks to be tackled.

“I would personally go much further because my concerns about TTIP are not just about the effect on public services but also the principle of investor protection that goes within TTIP – planned rules which would in effect almost enfranchise global corporations at the expense of national governments.

“This protection of the NHS is an important step but it’s not the whole step,” he said.

What is the TTIP? It is the Transatlantic Trade and Investment Partnership. It aims to create a free-trade agreement between the EU member states and the USA.  Boosting the economy is seen as particularly important after the economic crisis but this major issue also has long-term policy implications.

Opinions are sharply divided on both sides of the Atlantic where the debate about the pros and cons of the TTIP remains well entrenched. Many groups are campaigning against this agreement, trying to force decision-makers to change it.

So, let’s take a quick look at the arguments on both sides.

The main advantages that the TTIP may bring to the US and EU are that it will:

  • Boost the US and EU economies;
  • Create new business and trade opportunities on both sides of the Atlantic;
  • Provide an opportunity to set common standards and similar regulations that may facilitate the action of companies;
  • Remove of some market barriers and promote the free-market;
  • As a consequence of the removal of tariffs, reduce consumer prices of many products.

But, unsurprisingly, opponents view things differently. They warn that:

  • The new common standards will probably be lower than those previously existing (mainly in Europe);
  • The new investor-state dispute settlement (ISDS) procedures may infringe principles of sovereignty and, in cases, go against the democratic rules of countries;
  • Since companies may sue governments and officials, the latter may become more cautious and bureaucratic to avoid legal troubles;
  • The lack of transparency during the process of negotiations reduces accountability and the capacity of citizens to understand its potential impact;
  • In some regions, where the industry is less competitive, many jobs may be lost.

 

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Being in the sun helps vitamin D levels but Orkney’s high MS rate is not due to deficiency, study shows

orkney

Spending more time in the sun can help everyone who needs to overcome his or her low level of vitamin D – and research in Scotland suggests that even taking holidays abroad may hold the key to tackling vitamin D deficiency.

People who take foreign breaks have higher levels of vitamin D in their blood, which has been linked to wide-ranging health benefits, including fighting multiple sclerosis. According to the findings, farmers also have higher levels of the vitamin – which is produced naturally in the skin after exposure to sunlight.

Researchers at the University of Edinburgh surveyed the vitamin D levels of around 2000 people in Orkney – 1 in 10 of the population – as part of the ORCADES study.

The team was interested to see whether widespread vitamin D deficiency in Orkney might explain why rates of multiple sclerosis are higher there than anywhere in the world but they were surprised to find that average vitamin D levels are higher in Orkney than mainland Scotland, with the highest levels being seen in farmers and people over 60 years of age who take regular foreign holidays.

Vitamin D is known to be associated with good bone health. It has also been linked to wide-ranging health benefits including lower blood pressure, reduced heart disease risk and better chances of surviving cancer.

Deficiency in vitamin D has been strongly linked to diseases including multiple sclerosis. Scotland has one of the world’s highest rates of MS with Orkney being the worst affected. Studies have yet to prove that vitamin D is responsible or whether it serves as a marker for how much sun exposure a person has had.

Professor Jim Wilson, who led the study at the University of Edinburgh’s Usher Institute, said: “It was surprising to see that levels of vitamin D were not worse in Orkney, and if anything they were better than in mainland Scotland. It would appear that poor vitamin D status, while common enough, cannot explain the excess of multiple sclerosis we see in Orkney.”

Emily Weiss is PhD student at the University of Edinburgh who was involved in the study. She said: “It was interesting to find that the traditional occupation of farming was associated with higher levels of vitamin D in Orkney. This may be because farmers are outside and utilising even the smallest window of vitamin D strength sunshine.

“We also found that farmers in our Orkney cohort tended to be older, suggesting that the traditional way of life is changing, leaving younger people potentially more exposed to MS risk factors such as vitamin D deficiency.”

The research is published in the journal PLoS One and was funded by the Shetland and Orkney Multiple Sclerosis Research Project.

 

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New multiple sclerosis treatment to repair myelin is at phase 2 trial stage of development

anti-lingo-1

Anti-LINGO-1 (also known as BIIB033) is a new MS treatment being development by the pharmaceutical company Biogen. It is currently being tested in people with optic neuritis, relapsing remitting MS and secondary progressive MS in phase 2 clinical trials.

LINGO is a protein found in nerve cells and myelin-making cells called oligodendrocytes. Blocking the activity of this protein with an antibody called anti-LINGO-1 has been shown to result in myelin repair in animal models of MS.

In April 2015, results from a phase 2 clinical trial testing the safety effectiveness of anti-LINGO-1 as a treatment for optic neuritis were announced at a conference. The trial involved 82 participants with a first episode of acute optic neuritis. They were given six doses of anti-LINGO-1 (100 mg per kilo weight, once every four weeks for 20 weeks) as an intravenous infusion or a placebo.

Biogen, the manufacturer, found that those taking anti-LINGO-1 had better signalling along the optic nerve, suggesting myelin repair had taken place. Participants had a 41% improvement in nerve signalling compared to the placebo group.

 While these results still need to be published in a scientific journal, these results are the first indication that a drug could promote remyelination in people.

Another phase 2 trial, also by Biogen, testing the safety and effectiveness of anti-LINGO-1 in people with relapsing remitting or secondary progressive MS began in April 2013 and is due for completion soon.

This trial involves 416 participants, who are being divided into five groups, each receiving either three, 10, 30 or 100 mg of anti-LINGO-1 per kilo weight, or a placebo, once every four weeks for 72 weeks. All participants are also receiving beta-interferon-1a injections once weekly. Researchers are investigating whether anti-LINGO-1 can improve the function of the nervous system, cognitive ability or disability over the 72-week timeframe.

Some adverse effects of MS were reported: two participants had hypersensitivity reactions to the infusion itself, while one participant had an increase in liver enzymes – which was resolved by discontinuing the treatment.

If the phase 2 trial of anti-LINGO-1 in people with MS is successful, a larger scale phase 3 trial will be carried out to confirm its effectiveness as a treatment for people with MS. Research is still at an early stage and it will be a few years before it is known whether any of these drugs are effective treatments for people with MS.

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