Birthday presents: True diagnosis and a possible treatment

It was a strange day, well, certainly out of the ordinary!

I am talking about last Friday, November 8, 2019. First of all, it was my birthday (yep, now 67, getting on a bit) but it was also the day I had to see my neurologist for my regular MS check-up. Not the day I would have chosen for the appointment, but it was definitely one I couldn’t forget.

Prior to the trip to see the doctor, I had undergone a new MRI scan, and the full range of blood and urine tests.

The MRI scan confirmed that the lesions in both my brain and spinal cord remain inactive, as I was first told by Dr Fedorenko (pictured, left) in Moscow three years ago.

Laboratory tests on blood and urine proved to be normal – a description of me that my ever-loving wife Lisa finds somewhat unbelievable – with even vitamin D having recovered from ‘deficient’ to ‘sufficient’ with the help of supplements that the Spanish neurologist had previously prescribed.

We discussed my current abilities and disabilities, she asked me to demonstrate my leg and arm movements, and then she said I could have treatment to stop further deterioration but emphasised it would not do more than that.

Hospital Torrecárdenas, in Almería, where my neurology appointment took place,

Wait, what? For the very FIRST time since MS was diagnosed in April 2002, I was being offered a treatment which could slow its progress.

So, what was being suggested? Her first choice was Rituximab but I was unhappy as I know it has a high risk of unwanted side effects. Her second choice was Imurel (azathioprine), an oral medication more commonly used against lupus. I have not started that yet, so we’ll have to see where that goes.

Why such a long wait?

The question that remains is why it has taken more than 17½ years for me to be offered any MS treatment instead of just medications for pain, urine control and the like.

Well, let’s look at that!

Back in 2002, in the UK, the diagnosing neurologist said I had benign MS. Of course, back then I didn’t have the knowledge I have today. So, I didn’t know then that ‘benign’ is not a true type of the disease.

After three or four visits to the neurologist, he referred me to an MS specialist nurse, assuring me that Andy, the nurse, would arrange a neurologist appointment if I wanted one.

Visits to the nurse generally took the form of “why are you here?”, not a great start. Eventually, I asked to see a neurologist again but was told: “You had RRMS (relapsing), now you have SPMS (secondary progressive), there is no treatment, you don’t need to see a neurologist. He can do nothing for you.”

And that was that, except to say that the MS nurse is no longer in that position!

Later, while writing for Multiple Sclerosis News Today, I interviewed Dr Patricia Coyle (pictured, left) for an article for my column in the web-based digital publication. Dr Coyle is the Founder and Director of Stony Brook’s MS Comprehensive Care Center, in Stony Brook, Long Island, New York. She has several decades of experience with nervous system immune-mediated and infectious disorders. She has been involved since medical school with patient care and research focused on MS.

Anyway, with the interview over, we chatted about MS and she asked me about the symptoms I had experienced along with other probing questions. After all that, and without access to any of my records or test results, I could not expect her to make a diagnosis. However, she said from what I had told her, she believed I had PPMS (primary progressive MS).

That being said, on Friday I asked the question. What type of MS do I have? My neurologist, who does have my health records, replied without hesitation. “You have primary progressive,” she said.

So, it was a day when I finally found out my true diagnosis and was offered treatment for the first time. If not strange, it was certainly an extraordinary day.

50shadesofsun.com is the personal website of Ian Franks. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. More recently, he was a freelance medical writer and editor for various health information sites. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

Creating a small business – How to balance work, parenting and disability

This post is by guest columnist Patrick Young, an educator and activist.
He believes people with disabilities must live within a unique set of circumstances – the outside world often either underestimates them or ignores their needs altogether.
Patrick created AbleUSA to offer helpful resources to people with disabilities and to provide advice on navigating various aspects of life as a person with disabilities. I believe many of the points he makes are also relevant in many countries besides the US.

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Despite having a disability, you keep beating the odds again and again. You’ve created financial stability for yourself and your family. Now you’re ready to broaden horizons and add an additional stream of income. Like everyone else, you’ve heard talk about how the gig-based economy is revolutionising the way people do business and live their lives and you’re ready to get in.

When starting your own small business, the sky is truly the limit. There is a wide array of possible small jobs you can take up on your own, anywhere from commercializing your hobbies online to selling real estate in your local neighborhood.

Whatever you choose to do, you need to know the ins and outs of starting your own business, and the best ways to balance a small business with your other priorities in life. Here are a few tips to help you along the way.

Know what resources you have at your disposal

It would be foolish to overlook the many different public and private resources you have at your disposal. Living with disabilities isn’t easy, but there are a number of ways you can qualify for grants and other forms of funding to help get your small business up and running.

Look into what you have available and see which opportunities are the best for your individual needs. When it comes to starting a business, it’s good to have additional capital at your disposal.

Aside from funding, you should also look for any kind of pre-existing platform to help get your small business up and running. For instance, if you are looking to sell something, it might be easier to go through an online site that caters to your particular market.

How to get started in the gig economy

When just getting started, it’s important to keep your expectations modest. It’s impractical to think that you’ll create a Fortune 500 company overnight. Instead, set small attainable goals for yourself, and create just enough work for yourself so that you can get a taste for the life of a small business owner without immediately overburdening yourself.

You still have a family to watch over, and trying something for the first time is bound to throw a few curveballs your way, so limit your output and see where the business goes from there.

The key to working in a busy household

When balancing work with family, it’s easy for lines to get blurred.

When you decide to start your small business from home, you probably do so for the sake of convenience. However, sometimes, things can quickly digress into confusion.

The key to managing a small business from home is keeping your business separate, neat and diligently organised. Find an area of your home that is spacious, easily accessible and quiet. Then, convert it into your own personalizsd workspace to maximize organisation and efficiency.

These are just a few tips to get your small business up and running. Just remember that when trying something for the first time, it can take a while to get the hang of things. No matter what challenges you face along the way, you are a strong independent and capable individual who can overcome anything.

Picture: Pixabay.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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fracking50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Disabled people can be worse off if they return to work

People with disabilities, whom the government urges to return to work, find that doing so often means they end up being financially worse off.

It’s all because for many sick and disabled people, including those of us with multiple sclerosis, self-employment is the only realistic option. Regrettably, this is because they face heavy discrimination in the employment market. Even though such discrimination is illegal, proving it is another matter.

Benefits guru Steve Donnison, of campaigning organisation Benefits and Work.co.uk, said: “Yet again, they are being punished by the DWP (Department for Work and Pensions) for the offence of being sick or disabled.”

The problem appears to stem from the way in which the self-employed are being treated under universal credit.

Writing on the benefitsandwork.co.uk website, Donnison explains: “A report by Policy in Practice has revealed that, if universal credit had already been fully rolled out across London, the average self-employed household would be £344 a month worse off than under tax credits and housing benefit.

“The huge drop in income is caused by the DWP using a ‘Minimum Income Floor (MIF)’ which minimum wage for every hour they are deemed to have worked.

“In reality, 91% of self-employed households in London, where the study was carried out, earn below the MIF,” he added.

Some years ago, I was self-employed, as a freelance consultant. From experience, I can say that not only are working hours liable to have lower income than the minimum wage, but that self-employment hours are likely to be fewer than a traditional working week.

Welfare reform rethink urged

universal creditAccording to The Guardian daily newspaper, the report’s revelation has led MPs and campaigners to call for a rethink on the government’s flagship welfare reform. It said:

Frank Field, the Labour chair of the work and pensions select committee, said it was ‘another razor cut at the vulnerable human underbelly of the labour market’. The government has already been forced to slow down the roll-out of universal credit and overhaul how claimants are paid after complaints that some waiting weeks for their payments and falling behind with their rent.

However, serious problems have now emerged in the treatment of the self-employed because of the way their earnings are recorded under universal credit. The issues have arisen because a “minimum income floor” (MIF), based on the national living wage, is used to calculate universal credit payments each month.

Because self-employed workers’ earnings fluctuate from month to month, they sometimes fail to meet the minimum figure and lose out compared with salaried counterparts. They are also only given a year to get their businesses off the ground before the MIF kicks in. Using analysis of cases from 19 London boroughs over two years, Policy in Practice found that 78% of self-employed households on low-income in London are set to become £344 per month worse off under the new system.

Ministers argue that the system has been designed to encourage people to increase their work and move into better jobs. However, the new report warns that some people (such as those with disabilities) have little choice other than self-employment.

Simplify the welfare system

But who, or what, is Policy in Practice, publisher of the report?

Its director, Deven Ghelani, “Policy in Practice believes the welfare system can work more effectively. It can help people towards greater independence if we make it simple for people and organisations to understand.

“We simplify the welfare system by showing people how policy affects them.

“We show local authorities how individual households are affected by all policy changes, now and in the future.

“We talk to government on a national level to influence policy.”

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Treasury minister blames disabled people who work for fall in productivity

Government policies relating to people with disabilities appear to be in even more disarray than usual. Once again, those with disabilities resulting from diseases such as multiple sclerosis, or any other cause, are under attack.

The department for work and pensions’ assessment system for disability benefits is ‘encouraging’ disabled people to find work. But chancellor of the exchequer Phillip Hammond seems to be singing from a different songbook. That’s because he is blaming people with disabilities who work for Britain’s low productivity.

productivity

Chancellor Phillip Hammond. pictured on budget day.

The Treasury Select Committee asked Hammond about the fall in UK productivity that he mentioned in his budget speech. In reply, the chancellor (treasury minister) said: “It is almost certainly the case that by increasing participation in the workforce.”

He stated that this includes “far higher levels of participation by marginal groups and very high levels of engagement in the workforce, for example of disabled people.”

While he followed the government line that this is “something we should be extremely proud of”, he went on to say that it “may have had an impact on overall productivity measurements.”

However, that is neither fair nor accurate. People with disabilities are not the real reason for the drop in productivity. No, the real reason is closer to home – it is a series of government policies.

Of course, the chancellor didn’t want to admit that. So, he tried to use disabled people to distract the committee from the truth. But, all that led to a more than ironic situation.

Productivity: A government-made crisis

Not so long ago, people on disability benefits were demonised as scroungers and skivers. Now, though, it is the turn of disabled people in work. Hammond is trying to demonise them for lowering the productivity of the whole workforce. That would be funny, if it wasn’t so sick.

Labour’s work and pensions shadow secretary Debbie Abrahams was quick to condemn Hammond.

She said: “It is disgraceful that Philip Hammond is scapegoating disabled people for a productivity crisis created by the Conservatives’ failed economic policies.

“This is coming from a government that has forced disabled people to pay the price of their (the government’s) failed austerity agenda, including by cutting measures that help disabled people into the workforce and scrapping their own manifesto commitment on halving the disability employment gap.

“We should be increasing disabled people’s access to employment, not denigrating their contributions. The chancellor should apologise immediately.”

I agree, Hammond should say sorry. He should apologise for wrongly blaming the disabled for the country’s drop in productivity. He should apologise for failed economic policies for which he, as chancellor, is directly responsible.

In fact, Hammond should apologise for being chancellor – and then resign.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

Assessment complaints for disability benefit up nearly 900% in a year

Complaints about assessments for a key government disability benefit have rocketed by 880% in 12 months, according to official figures. It is a benefit paid to people with diseases like multiple sclerosis and those with other disabilities.

Yes, claimants’ complaints about assessments for Personal Independence Payment (PIP), that totalled 142 in 2015-16, rose to 1,391 in 2016-17.

assessments

Photo: The Independent

Furthermore, if that was not shocking enough, it gets worse. The UK government’s Department for Work and Pensions (DWP) has produced figures that show that the number of complaints about PIP assessments that were upheld. Over the same time, these rose from 67 to 545 – an increase of more than 713%. To me, that is a sad commentary on the lack of quality of the assessments and honesty of the assessors.

The facts were revealed by Penny Mordaunt, minister for disabled people, in answer to a parliamentary question from Stephen Kinnock.

assevssmentsBenefitsandwork.com, the campaigning website, commented: “In our last newsletter we highlighted the case of a PIP claimant who had used a secret recording of his PIP assessment to win his appeal tribunal.

“Given this level of doubt about the trustworthiness of assessments, and given the difficulties the DWP place in the way of claimants wanting to openly record their medicals, covert recording seems more and more reasonable.”

Not fit for purpose

According to Disability News Service, Kinnock claimed the figures were “further evidence that the PIP system is not fit for purpose”, despite the assessment system being in place for more than four years. He said:

assessments

Stephen Kinnock MP.

“While the scale of this is truly shocking, it is not in the least bit surprising, because week after week I hear from my constituents about how claimants are treated, how they are humiliated, belittled and denied basic human dignity.

“Government has been told by MPs, claimants and by disability experts that the system needs reviewing.  

“Instead, they have carried on regardless with their ideological drive to remove the help which people so desperately need, so that they are able to manage the basic daily costs of living with a disability.” 

A spokesman for the DWP is reported to have been unable to offer any explanation for the huge rise in complaints. He commented: “Complaints may be made for a variety of reasons and there is no evidence to suggest that there is dishonesty in the assessment system.”

Yeah, right!

Assessments appeals going online

PIP assessments appeals, and those about other benefits, are set to change. This is because HM Court and Tribunals Service (HMCTS) has reached stage two of the roll out of online hearings.

It says that virtual hearings and online hearings using ‘rapid messaging’ will become a reality over the next 18 months. Apparently, it will be possible to appeal online and track the progress of the case by text, email or online.

Many are likely to welcome the chance not to have to attend a face-to-face hearing. However, paper hearings have a very much lower success rate than in-person hearings. Claimants may well seek physical hearings, if the same low success rate applies to ‘rapid messaging’ hearings. 

HMCTS says in-person hearings will still be available “for those that need them”. My question is: Who will decide if a claimant is in ‘need’ of one? It should not be the DWP.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

 

 

 

Silly season lacks real news stories – whether general or about disabilities

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

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

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

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

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

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

Silly season = slow news

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

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

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

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

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

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

 

 

 

People with Disabilities are Right to Fear a May Victory

election

Theresa May, Conservative.

So, the people of the UK are facing a second general election in two years. And people with multiple sclerosis and other disabilities are worried what the results of polling day may mean for them. It could give prime minister Theresa May even more MPs to support her European exit strategy which is likely to lead to reduced benefits.

Mrs May has repeatedly dismissed the idea of holding another election but the fact that she now has one so is no real surprise for anyone with a healthy skepticism towards the honesty and trustworthiness of politicians of any nationality.

By calling an early general election, the prime minister gas gone back on her own statements. Indeed, she has repeatedly refused to call an election earlier than the due date of 2020.

Jeremy Corbyn, Labour.

In the last weeks and months, her spokesmen have maintained her public position that she herself expressed on the BBC TV’s Andrew Marr Show last year, Mrs May herself said: “I don’t think there’s a need for an election. I think the next election will be in 2020.”

When pressed by Marr, May was more direct, saying: “I am not going to call a snap general election.”

No ifs, no buts – just a categoric statement that there would not be early an election.

Tim Fallon, Liberal Democrat.

This week came her announcement. The prime minister went back on her word and called a snap general election to be held on June 8.

Should we be surprised? Of course not, it’s just another politician proving you can’t believe a word they say.

Let’s consider what it means. Of course, all UK citizens will potentially be affected, whether or not they vote. And that’s because the composition of the House of Commons will materially affect the outcome of the Brexit negotiations which could significantly shape their future.

Then there are those of us who are receiving disability benefits. We stand to be affected by the fact that UK laws are likely to be less generous without the EU looking over its shoulder.

Paul Nuttall, UKIP.

The likelihood of a Conservative government in a UK, without EU constraints, is not something that I can anticipate with much pleasure, in fact not with any pleasure at all – but, while I live in Spain, at least I have the right to vote back in the UK.

 

 

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50shadesofsun.com is the personal website of Ian Franks, who 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.