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News and Opinions about MS, Health & Disability

How will MS develop? Worry is pointless

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Am I concerned about the future? Do I worry about how multiple sclerosis will affect me as the years pass by? Does the future feel like a threat?

Well, the short answer to all three is “no”.

The reasons for this are not because of any insensitivity to, nor ignorance of, how serious MS can be. It is impossible to ignore the possibilities that may lie in wait but you have to remember that the risk of the very worst happening is extremely low.

worryMost people living with MS remain able to walk unassisted, while a smaller number need the help of a mobility aid. Indeed, many are able to continue working.

Only 25% of people with MS use a wheelchair or stay in bed because they are unable to walk, according to a survey completed before the new disease-modifying drugs became available.¹

I do need to use a wheelchair to get out and about because the amount I can walk is really limited to a very short distance. Even using a walking stick or cane, after 10 or 15 yards/metres I am forced to rest, preferably while sitting down. Similarly, standing is limited to a couple of minutes.

Steps can be taken only extremely slowly – both feet up to every step while holding on to the handrail. And that is only for three steps without help from someone else.

A wheelchair user I may be but even when needing to move further than I can walk, I do not consider myself confi.ned to my wheelchair; it is just a mobility tool to help get around when not driving my car. Indeed, my description of myself is ‘wheelchair enabled’.

The world-renowned Mayo Clinic² lists these complications that people with multiple sclerosis also may develop:

  • Muscle stiffness or spasms

Yes, have those.

  • Paralysis, typically in the legs

As I can still walk short distances, no I’m not paralysed

  • Problems with bladder, bowel or sexual function

Yes, have medications for those.

  • Mental changes, such as forgetfulness or mood swings

No brain fog or cognitive problems, no more forgetful now than ever, some ‘snappiness’ more than mood swings.

  • Depression

No, never had depression of any kind.

  • Epilepsy

    Yes, diagnosed with this 30 years before MS so hardly a complication. Medicated and fully under control with no seizure since 1975.

To sum it up, I don’t worry about what the future may bring, with or without MS. In fact, my own attitude to worry can best be encompassed by this quote from Dalai Lama XIV. He said:

If a problem is fixable, if a situation is such that you can do something about it, then there is no need to worry. If it’s not fixable, then there is no help in worrying. There is no benefit in worrying whatsoever.

 

¹ http://www.healthcentral.com/multiple-sclerosis/cf/slideshows/top-ten-common-myths-about-ms-busted#slide=4

² http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/dxc-20131884

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

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Disability: Uncaring and Disinterested

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Not that it is unexpected, but those of us with disabilities (whether MS, like me, or one of a host of others) are definitely getting a raw deal from the government, with no sign of any relief any time soon.

Two days ago, I brought you news that official UK government figures (reluctantly produced in response to a Freedom of Information Act enquiry) show alarming numbers of people with disabilities losing out in the move from Disabled Living Allowance to Personal Independence Payment. The figures show horrendous cuts to those being awarded the higher rate of the mobility component.

Now the Disability New Service has highlighted three more examples of an uncaring government under prime minister Theresa May who is more likely to be focused on the intricacies of Brexit than worrying about disability issues.

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Chancellor Philip Hammond MP.

Chancellor Philip Hammond MP.

Chancellor of the exchequer Philip Hammond has shocked disabled activists by ignoring the social care funding crisis in his autumn statement, and refusing to scrap a planned cut to employment and support allowance (ESA).

Despite weeks of lobbying from disabled people, politicians – including some Tory MPs – and charities, he announced no new money for adult social care.

Philip Hammond’s 6,000-word speech contained not a single mention of disabled people, disability or social care, and there was no suggestion of any u-turn on the £30-a-week cut for new claimants placed in the ESA work-related activity group (WRAG).

The WRAG cut had also been the subject of fierce lobbying, which had again included some Conservative MPs, and is now set to go ahead in April.

Disability employment gap election promise abandoned

A Labour MP has proved that the government has abandoned a target it set to halve the disability employment gap by 2020.

Justin Tomlinson MP.

Justin Tomlinson MP.

The promise, included in last year’s general election manifesto, said a Conservative government would “aim to halve the disability employment gap” in the next parliament.

A month after the party’s election victory, Justin Tomlinson, then minister for disabled people, confirmed in a press release that the government “aims to halve the gap between the disabled employment rate and the overall employment rate by 2020”.

But in recent months, ministers have suggested that there was no target date for halving the gap, with Penny Mordaunt, the current minister for disabled people, stating on November 4 that it was “a long term project”.

Mordant has now finally admitted that the government has abandoned the target, in a written answer to Labour MP Stephen Timms, himself a former work and pensions minister.

In his latest attempt to persuade the government to admit that it had abandoned a target date, Timms had asked whether it expects “to achieve the commitment to halve the disability employment gap by (a) 2020, (b) 2025 and (c) 2030”.

Mordaunt told him the government was “not setting a deadline for completing this work”.

Employers from discredited scheme transferred to replacement

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Minister for the Disabled Penny Mordaunt MP.

The Department for Work and Pensions (DWP) has admitted flooding its under-fire Disability Confident scheme with hundreds of employers from the hugely-discredited disability employment programme it is replacing.

The revelation is yet another blow to the credibility of the newly-relaunched scheme.

Penny Mordaunt, the minister for disabled people, boasted earlier this month that more than 2,400 businesses had already signed up to Disability Confident.

But DWP has now admitted that all but about 100 of those 2,400 organisations have simply been transferred across from Two Ticks – the scheme that Disability Confident is replacing – with many of them not even having to fill in an application form.

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

 

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People with MS receiving higher rate mobility allowance slashed by almost half

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Amazing and terrible figures about the differences in payments between two of the UK’s disability benefits have been uncovered by the BBC’s Victoria Derbyshire Show by using the Freedom of Information Act.

The differences relate to payments made through the Disabled Living Allowance which is being phased out in favour of the newer Personal Independence Payment. Both benefits have two sections, one for care and one for mobility. Both of those are paid at different rates, dependent of the level of the claimant’s disability.

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Photo: The Independent.

And the absolutely terrible news is that the official figures, revealed by the Freedom of Information Act enquiry, reveal that number of recipients of the higher level of the mobility component has been slashed during the change from one benefit to another.

For people with multiple sclerosis, while 93% of DLA claimants got the higher rate of the mobility component, under PIP this has almost halved to 50%.

In the case of those with Parkinson’s, the situation is even worse as the numbers have fallen to less than half from82% down to just 40%.

The most shocking of all is that while 83% of people with rheumatoid arthritis who were DLA claimants got the higher rate of the mobility component, but under PIP this has plummeted by more than two thirds to a miserable 24%.

Benefits and Work website that advises people with disabilities about claiming benefits has been at the fore front of the fight against the transition from the DLA to PIP, point out that the unfairness of the system is worse than just mobility component.

On the website, this week, it says: “Some claimants, such as Wendy who has early onset Alzheimer’s, get an award of PIP and then 18 months later are found to have improved to the extent that they no longer qualify for anything.”

Now, I think that that is a pretty amazing recovery!

Benefits and Work continues: “It was clear from the outset that PIP’s main purpose was to cut costs. It is now equally clear that the DWP (Department for Work and Pensions) don’t (sic) care who has to pay the price for those cuts.”

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

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Homeopathy ‘treatments’ may have labels to warn they do not work

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Homeopathic ‘medicines’, including those used by some people with MS, could soon bear labels saying that they may not work – by order of the US government.

Homeopathic remedies are regulated as drugs under the Federal Food, Drug and Cosmetic Act (FDCA). Under current Agency policy, the Food and Drug Administration (FDA) does not evaluate the remedies for safety or effectiveness but is now is requiring producers to provide proof of their effectiveness.

And, if the producers don’t provide such proof, their homeopathic medicines will need to carry warnings saying there is “no scientific evidence that the product works”.

According to a report by Andrew Buncombe, in the British newspaper The Independent, a notice issued by the Federal Trade Commission explained: “Homeopathy, which dates back to the late-eighteenth century, is based on the view that disease symptoms can be treated by minute doses of substances that produce similar symptoms when provided in larger doses to healthy people.”

The report continues:

Many homeopathic products are diluted to such an extent that they no longer contain detectable levels of the initial substance. In general, homeopathic product claims are not based on modern scientific methods and are not accepted by modern medical experts, but homeopathy nevertheless has many adherents.

homeopathicSlate said there was near-unanimous mainstream scientific consensus that homeopathy’s purported mechanism of action – using ultra-highly diluted substances to allow “like to cure like” – runs counter to basic principles of chemistry, biology, and physics.

Health policy expert Timothy Caulfield recently said: “To believe homeopathy works … is to believe in magic.”

Yet, reports suggest the so-called treatments are unlikely to disappear from the shelves of pharmacists’ shops.

The FTC said that a homeopathic drug claim that is not substantiated by competent and reliable scientific evidence “might not be deceptive if the advertisement or label where it appears effectively communicates that:

  • there is no scientific evidence that the product works; and
  • the product’s claims are based only on theories of homeopathy from the 1700s that are not accepted by most modern medical experts.

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

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Reasons to be Cheerful at Thanksgiving

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While citizens of the United States celebrate thanksgiving this Thursday, the festivities are all but unknown in the rest of the world.

As my wife Lisa is American, it should be no surprise to anyone that my thoughts at this time of year tend to turn to thankfulness.

  • I am cheerful that the MS lesions in my brain and spine are currently inactive and that there are no signs of current inflammation.
  • I am cheerful that Lisa is my wife She is the love of my life, my lover, confidant, and my very best friend.
  • cheerfulI am cheerful to have enjoyed a career as a writer, about which I have a passion. Even today, when MS prevents me from going out to work, I am cheerful that I have the ability to write at home and to be able to use the internet as my method of publication.
  • I am cheerful for the support of members of the online community who continue to read my MS, Health and Disability blog at 50shadesofsun.com as well as for the owners and fellow writers who contribute to the various disease/disorder-specific news and information websites run by BioNews Services.
  • I am cheerful that Lisa and I moved to, and now live in, the sunny south of Spain.
  • I am cheerful for the ease with which we can communicate over such long distances in today’s computerized world. With friends and family in the UK and USA, as well as fellow writers and other contacts throughout the world, it is as though they are all just a couple of miles away.
  • I am cheerful for ease of travel and for the assistance available to people with disabilities when travelling by plane, ship, train, coach, bus, or taxi. Added to that, I am cheerful to have my folding electric wheelchair that makes such a huge difference to my life.
  • I am cheerful that I have been able to fulfil dreams that were once beyond the remotest of possibilities, such as sailing across the Atlantic, staying in New York City at Christmas-time, going to Hawaii, and visiting the Arctic circle. I am cheerful, too, that the opportunity remains to fulfil more dreams in the future.
  • I am cheerful to enjoy entertainment in whatever form it takes: films, TV, theatre, sport, music, ebooks, games or puzzles.
  • Finally, I am cheerful that I am alive and able to do what I can, when I can.

I may have MS but it does not have me, I refuse to let it!

Stay cheerful.

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

 

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Is vitamin D supplement responsible for improvements?

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This article, written by me, first appeared on Multiple Sclerosis News Today.

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

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Government MS group says more support needed at work

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People with MS who want to work are just not getting the support they need in the workplace.  That´s the verdict of the UK’s All Party Parliamentary Group for MS.

The group issued its report after conducting a year-long review into whether people with MS have the support they need to stay in, or get back into, work. It has also made recommendations about improving support that people with MS need.

Unsurprisingly, the review found that the fluctuating nature of MS is a significant obstacle to gaining, or staying at, work. Other findings were:

  • Common MS symptoms (including fatigue, mobility issues and cognitive problems) can cause significant challenges at work.
  • Those who are not in or looking for work due to their MS lose almost 20 working years on average.
  • Preventable issues result in many people with MS leaving work earlier than they would choose to. These issues include people with MS facing stigma and discrimination at work and a lack of understanding of MS in the workplace.
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All Party Parliamentary Group for MS chairman Simon Hoare MP.

Group chairman Simon Hoare said: “Small, straightforward changes by employers – such as supporting managers to feel confident in talking with employees about their health and offering reasonable adjustments – can help people with MS to stay in work for longer.

“There are areas for improvement in Government policies and employment support schemes such as the Work and Health Programme and Access to Work. And employees need to feel comfortable about discussing their immediate and ongoing needs with their employers.”

MS Society chief executive Michelle Mitchell said: “With the Government’s consultation on work, health and disability now launched, this timely review sets out concrete steps that could result in more people with MS, who feel able to, remaining in work.

“We know that employment can help people with MS to remain independent and participate in society, so it’s crucial this issue is addressed. And those who can no longer work should be able to rely on welfare support without the fear of having it taken away.”

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

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Research About Why Interferon Can Fail is Welcome

I have made no secret of my distrust of the side effects from many of the disease-modifying therapies (DMTs) that are used mainly in the fight against relapsing multiple sclerosis (MS). The fact that the most serious, albeit rare, side effects listed by the manufacturers of some drugs, include “death” is more than a little off-putting.

And, as if that is not bad enough, some drugs just don’t work with a large proportion of people with MS. Indeed, interferon-beta is said Interferonnot to work for as many as half those who are treated with it.

The good news, though, is that researchers at Duke University in North Carolina, working with mice, seem to have discovered the reason.

Their study, “Mapping the Biology of Drug-Resistant Multiple Sclerosis,” has revealed biological mechanisms that can lead to a form of MS that doesn’t respond to the drug. What’s more, they have identified a new drug that might help MS patients for whom interferon-beta treatment fails.

I am not going into scientific details in this column; those who wish to do so can follow the link above. But it is good to see some progress is being made in this area.

Duke University associate professor of immunology Mari Shinohara, PhD, was a senior author of the study. She said: “The study shows a really clear molecular mechanism that may explain why some people do not respond to interferon-beta treatment. We’ve found what makes a difference in the response.

“We found that, depending on which type of disease the mice had, we could choose the appropriate treatment,” she said.

Professor of medicine and molecular genetics and microbiology, at Duke, and a coauthor of the paper Simon Gregory, PhD, said: “We identified individuals who were not responsive to the interferon-beta treatment, and looked at their CXCR2 and LTBR relative gene expression levels.” They were found to be producing more of the receptors.

Researchers voiced concern about MS patients currently being failed by one of the several interferon-beta-branded drugs available.

Shinohara said: “Now these patients have to go through all the pain, inconvenience, and cost of interferon-beta treatment, only to be told that it doesn’t work for them. It’s a big problem, and it would be really nice if we could tell upfront which treatment works,” she said.

In the U.S., the National Multiple Sclerosis Society and National Institutes of Health support the study.

This article, written by me, first appeared on Multiple Sclerosis News Today.

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

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One year on: Living with MS in sunny Spain

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It was this Sunday a year ago that Lisa and I arrived in Spain to start our new life in the sunshine, just 15 minutes from the Mediterranean.

Yes, although even the two of us find it hard to believe, we have lived here in Spain for 12 months. And we love it.

Two of the main reasons that we decided to relocate to the south of Spain were for better weather and for a hoped-for improvement in my health, having been diagnosed with multiple sclerosis in April 2002.

So, let’s have a look at what is going on in Spain:

  • My health: Well, of course, I still have MS but from an MRI scan last month I know that the lesions on my spine and brain are inactive. Now, I am not going to attempt to explain the technical details but will just say that my symptoms seem to have stabilized. I am now beginning to be able to move a few steps without holding on to furniture and walls, which is a good sign. It seems that I have got no worse since our move; whether that is linked to the sunny weather, I don’t know.
  • Weather: Sunny and warm most of the year. The area is renowned for having upwards of 320 days of sun per year. Such a change from the UK climate. Before we moved, it was not unusual to have to wear winter jackets in July; but here, in January his year, we were dressed in summer clothes sitting out in the sunshine. Luckily, my version of MS-related heat sensitivity is not affected by warm weather but by sudden fluctuations; this makes Spain an ideal place to live.
  • Healthcare: Like the UK’s NHS, the Sistema Nacional de Salud de España (Spain’s National Health Service) provides socialised healthcare for all residents. Our experience of this has included fast and efficient hospital service, both as in-patient and out-patient, efficient local health centre where our GP is based – including the ability to make appointments online. Prescriptions charges are so low as to be negligible and pharmacists here can provide certain products that require a doctor’s prescription in the UK.
  • Dentists and Opticians: While these are not covered by the health service, and so we have to pay, the costs are not excessive and even the sight test is free if you buy spectacles from the same place.
  • Roads and driving: Spain has the most amazing network of roads that are mostly wide, open and free. Some of the newest motorways, known as autovias, are toll roads. They have different designations. Near us, we have the A7 (free autovia) and the AP7 (toll autovia). Of course, like all mainland European countries, the USA and many more, the Spanish drive on the right-hand side of the road, unlike the UK. But, despite having driven on the left for more than 40 years, driving a left-hand drive car on the right side of the road has come naturally to me.
  • Restaurants, Bars and Cafés: There are so many from which to choose, featuring a wide variety of cuisines. Many also offer a Menú del Día option which is a reasonably priced Menu of the Day including a drink.
  • Shopping: We are well serviced by supermarkets, specialist shops, economy stores and the usual wide range of high street shops. No-one does home deliveries or click-and-collect however. Those advances haven’t reached Spain yet, at least not the rural part.
  • Motor fuel: Whether you want diesel or gasolina (petrol), they are both reasonably priced and cheaper than in the UK.
  • Electricity: The costs are higher in Spain but not so high as to detract from living here.
  • People: We have found everybody so pleasant and helpful; something quite unlike anything we’d previously experienced. Only two days ago, as Lisa was packing our shopping into bags at the supermarket checkout, a young man appeared and helped her, and then loaded them back into the cart. We thanked him but he insisted on escorting us back to our car where he folded and loaded my electric wheelchair plus all the shopping into the vehicle and even took the cart back and reclaimed the one Euro coin and returned it to Lisa. I was surprised to receive similar treatment in the USA but Lisa explained that the guy was paid to do it; it was his job. The man in Spain was not wearing the supermarket uniform, in fact it does not employ packers. He was just a member of the public who wanted to help!
  • Language: Our linguistic skills are improving and I find myself understanding the gist of what someone is Spainsaying in Spanish and being able to make myself understood.

To sum it all up, one year on from our big move, we both absolutely love it. We are healthier (in my case, with MS, I equate ‘no worse’ to being healthier), happier and financially better-off.

Now, where’s my Sangria?

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

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HSCT in Moscow, Day by Day

ms-headerDoesn’t time fly? It seems only yesterday that I was preparing to go to Moscow, yet tomorrow will be three weeks since my return. (Note: Now four weeks).

I have written enough about my experiences at the AA Maximov center so, today, we’ll take a look at how HSCT progresses, step by step.

The following is reproduced from the Moscow clinic’s instruction schedule. I hope that you find it interesting.

Meals:

8.30 – 9am          Breakfast

12pm                     Second breakfast

2pm                       Lunch

6pm                       Dinner

Steps of Treatment

Stem cells stimulation – 4 days (sometimes 5-6 days, depending on the results of stem cell collections) in combination with infusion of steroids at 11am (1 dose – 200 ml liquid for 20-40 min).

Also, patient takes 1 antacid pill twice day 30 mins before food (before breakfast and before dinner).

G-CSF stimulation injections (subcutaneous) at 11 pm and 3 am.

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That’s me in my new wheelchair in the HSCT centre in Moscow, with Dr Fedorenko and assistant Anastasia.

Insertion of special catheter in neck for stem cell collection and chest X-ray control.

Collection of stem cells (for 1 or 2, sometimes 3 days), (we need to collect 2 or more million hematopoietic stem cells per kg of body weight) .

Removal of neck catheter and insertion of new catheter for chemotherapy and further treatment.

Chemotherapy (4 days).

1-2 days of rest (receiving only supportive medication infusions twice a day).

From the beginning of chemotherapy: patient takes oral medications 3 times a day (antiviral, antibacterial, antifungal, PPI gastro protection).

Pills for breakfast —  1 antacid pill before food. Other pills — after food. Pills for lunch — 1 pill after food. Pills for dinner — 1 antacid pill before food. Other pills — after food. Patient has additional oral medications on Mon, Wed, Fri — co-trimoxasole (2 white big pills — morning, evening). Patient has 2 supportive medication infusions in the evening.

Food Allowed during treatment: Most food from outside the hospital is suitable.

Foods to be Avoided during treatment: Fresh fish, e.g., sushi, raw meat, un-pasteurised milk or milk products, see note below. Fast food outlets, fresh vegetables and fruits.

Day of transplantation. Patient should avoid food after 12 pm on this day. Nurses Will clean and prepare room for transplantation.

Isolation. Patient should never leave the room. Patient should keep the glass door closed. Medical staff will clean the room every day. Patient’s suitcases will be removed. Patient should heat up food (approx. 10-20 seconds) in the microwave before consuming. Patient should use a special solution for mouthwash (mix half of cup of red solution with cap of water). Patient should use provided clorhexidine solutions for washing body — big bottle for genital area and small for legs/arms/body. Our staff will change bedding and wash clothing every day.

A patient must inform medical staff immediately of any problems or changes in condition.

Food Allowed during Isolation: Tinned food, e.g., vegetables or tuna, Bread, Coffee, Tea, Dried fruit, Fruit Juice, Spices, herbs, Lollies/sweets, Nuts — roasted and salted. Processed food, e.g., muesli bars, packets of soup, noodles, Milk and Yoghurt conforming to hospital standards.

Food Restrictions during Isolation: Fresh vegetables and fruits, Milk and Yoghurt products that don ‘t conform to hospital standards. Raw nuts, toasted muesli — unless it is microwaved first – Fresh fish, e.g., sushi, raw meat.

Patient receives one infusion of Rituximab (for 5 hours) after recovery of leukocytes (1 or 2 days before discharge).

This article, written by me, first appeared on Multiple Sclerosis News Today.

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

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