Late night police visit to pick me up

Police on your doorstep late at night is never a good sign. If their business cannot wait until the morning, it must be serious, right?

And, so, it happened. Just before midnight, a car pulled up and two uniformed officers came straight to our house.

No, we had done nothing wrong – they didn’t want to question us… or worse! There had been no accidents involving family or friends – they were not bringing us sad news. So, why were they here?

Well, as silly as it sounds, they had come to pick me up ……. off the floor.

You see, I had slipped while transferring from the sofa to my wheelchair, and ended up on the floor.

Despite continued and varied attempts on my part, I was unable to get up – so called 112. This is the emergency number here in Spain, equivalent to 911 in the US and 999 in the UK.

The operator was attentive, reassuring, and efficient. He listened the facts, understood I have esclerosis multiple (multiple sclerosis), and, after ascertaining that I wasn’t injured and did not need medical assistance, said help was on the way.

And, just 15 minutes later, two Local Police officers arrived to pick me up. This they did quickly and effortlessly and were both courteous and friendly.

Taking of police in Spain, perhaps I should point out that we have three forces – the Guardia Civil, the Policia Nacional and the Policia Local.

The Guardia Civil (Civil Guard) is Spain’s conventional police force which is organised along paramilitary lines and controlled by the Ministry of the Interior. The Guardia hs wide ranging responsibilities for national law enforcement and have the resources, powers and facilities of a normal police force. The Guardia Civil polices rural areas and smaller towns as well as the country’s highways.

The Policia Nacional (National Police) is the urban police agency of Spain. They are under the sole authority of Spain’s Ministry of Interior. Like the Guardia Civil it is a conventional police force, that polices cities and larger towns. It is also responsible for border security and issues residencia certificates for anyone wanting to become a resident in Spain and the essential national-registry identification number (NIE). It also undertakes the security of the Spanish royal family and the government. 

Policia Local (Local Police) is the force that is controlled by the relevant regional or local authority. It does not investigate crime but deals with minor matters. These include parking, local traffic control, bylaw issues, and, of course, picking me up off the floor. 

50shadesofsun.com is back

Hi

This is just a brief note to say that 50shadesofsun.com is up and running again.

I know there has been a lack of posts for a few months, but the site is back in business.

Regular readers will know that I live with multiple sclerosis, an unpleasant, unwanted, degenerative disease. It is oppressive and daunting but I am still the same person, positive and mainly cheerful athough there are times of frustration. But everyone gets frustrated sometimes, right?

The good news is that MS had nothing to do with this site’s short break, read more here.

The site has a new look, is easier to read, and has changed its host to WordPress, so costs have been reduced – which is essential. After all, 50shadesofsun.com is not designed to be a money-earner.

It is an independent site which is totally free of any commercial influences. And it will continue to be just that. I promise.

Freedom of the press, of which digital media is a part, is very dear to me. As such, I will continue to voice my opinions, whether to praise or criticise, to encourage or warn, Whatever they are, my opinions will be honestly held and be fair comment.

Watch this space!

Invest more in innovation and development say wheelchair users in international study

Millions of people have lower-limb paralysis – the most common causes being strokes, spinal cord injury and multiple sclerosis.

Now, users of wheelchairs and other devices to assist lower limb mobility say they need more money to be invested in innovation and development. And, as a wheelchair user, I agree totally.

innovationThis is the result of an international study of wheelchair users across the UK, USA, Japan, Brazil and India. It was carried out by ComRes on behalf of the Toyota Mobility Foundation.

Key findings include:

     Nine out of 10 (89%) wheelchair users experience pain as a result of their mobility device;

       Nearly a quarter (23%) say they have been declined entry to public transport because of their mobility device;

       43% say they have been unable to find an accessible toilet when they needed one;

        30% of say they have felt frustrated because the design of their mobility device felt outdated.

The study also found that wheelchair users experience repetitive strain injury (RSI) and pressure sores (29% and 22% say this respectively).  

The survey found that nearly a third (30%) of wheelchair users say they have felt frustrated because they design of their mobility device feels outdated.  The top five improvements that would be most helpful to them, they say, are to enable them to:

      move around faster (41%);

        perform regular day-to-day tasks more easily (37%);

        feel more relaxed & comfortable with a device that feels more natural and like an extension of themselves (37%);

        feel more confident and able to socialise and meet with friends (34%);

        feel a sense of spontaneity, freedom and independence (32%).

Innovation: Where we go from here

People with lower-limb paralysis are now being encouraged to take part in a global conversation about the types of mobility technology innovations they would like to see, using the hashtag #MyMobilityUnlimited.  

Toyota Mobility Foundation’s director of programs Ryan Klem said: “This research expresses the urgent need for innovation in this area. It’s surprising that with all the technology we have today, we still have people in constant pain as a result of their mobility devices. The comments we are receiving through social media show the kinds of developments that people want to see, and we hope the Challenge will result in genuinely life-changing technologies.”

Nesta Challenge Prize Centre’s Charlotte Macken commented: “While the focus of this Challenge is lower-limb paralysis, we absolutely do expect that the technology developed as a result will be transferable and have the potential to improve the lives of a much wider group of people. This Challenge is about achieving impact, and for that reason, we needed to narrow the focus. However, we recognise that people have a wide range of mobility needs and hope to be able to help them too.”

For more information please visit mobilityunlimited.org

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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, so 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 stat

MS researchers find new switch for myelin repair

Researchers have found a brain molecule that promises to have a vital role in the repair of the myelin sheath. This is damaged in people with multiple sclerosis.

The molecule was found by a research team at the MS Society Edinburgh Centre for MS Research, in the UK. It amounts to a switch that can promote myelin repair in the brain and spinal cord.

myelin

Dr Veronique Miron of the Edinburgh Centre for MS Research (pic: MS Society).

Dr Veronique Miron headed a team that previously showed that a protein called activin-A is important in remyelination. However, at that time, despite their efforts, it was not clear how it worked.

This time, their new research has found the exact switch in cells that it triggers. Studies in mice showed that when this switch, or receptor, is turned on by the activin-A protein. According to their report, which was published in the journal Acta Neuropathologica, it increases the number of myelin-making cells. As a result, it boosts myelin repair.

The Edinburgh team used tissue from the MS Society Tissue Bank to look for the ‘receptor’, called Acvr2a, in MS brain lesions.

They found that In tissue from people with progressive MS, levels of Acvr2a were higher in areas where myelin repair was active. Conversely, where myelin repair was not taking place in MS lesions, levels of the receptor were lower.

Search for new treatment

Next, scientists will look to identify drugs able to target Acvr2a to promote myelin repair. These could then be developed into treatments for people with MS.

Senior author Dr Veronique Miron said: “When we first discovered this protein activin-A, we didn’t know exactly what role it played in remyelination. We now know it binds to a specific receptor, which then causes cells to carry out myelin repair.

Dr Susan Kohlhaas, MS Society director of research (pic: MS Society).

This is a really exciting discovery because we can now focus our efforts on developing drugs that target the receptor. If we can do that, we can encourage cells to make new myelin after damage has been done in MS.”

MS director of research Dr Susan Kohlhaas said: “We’re thrilled to be supporting Dr Miron’s ground-breaking work. Many of the 100,000 people living with MS in the UK still don’t have any treatment options. Finding new targets like this receptor mean we’ll be able to develop more effective treatments and stop MS faster.”

While this discovery is important to everyone with MS, it’s particularly exciting for anyone who, like me, has a form of progressive MS.

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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.

Zinbryta use restricted in Europe after a death and four serious liver injuries

The European Medicines Agency (EMA) has restricted the use of multiple sclerosis drug Zinbryta. The agency took action after a patient died from liver injury (fulminant liver failure). The patient was in an ongoing observational study. Four cases of serious liver injury have also been reported.

We are all likely to experience some side effect of any medication we take, whether for multiple sclerosis or some other disease. Most of us, hopefully, will only have minor problems, if any, but some will be badly affected.

All medicine manufacturers provide a list of their drugs’ side effects, from major to minor, from common to rare. Pharmaceutical companies provide this information for the benefit of patients, not just healthcare professionals.

And, we need to take those lists seriously. After all, it is our health that is on the line.

I always pay close attention to news of new drugs approved for use in the treatment of MS. But, no matter how good the claimed benefits appear, I focus on the possible side effects admitted by the manufacturer.

Now, that is not to say that all disease modifying therapies (DMTs) are bad for us. But we need to balance benefits against the disadvantaged of possible side effects. Everyone must make their own decision.

Such decisions are personal. I have never accepted any DMT.

Zinbryta – liver damage risk known when approved

zinbrytaZinbryta (daclizumab) is one such DMT and its side effects include the risk of liver damage. The EU knew this when it approved the drug in July 2016. In fact, it put several measures in place to manage this risk. These included the requirement to monitor liver function and provide educational materials to healthcare professionals and patients on the risk of liver damage.

Now, though, a year later, the EMA has provisionally restricted the use of the medicine to:

  • patients with highly active relapsing remitting MS (RRMS) that has failed to respond to certain other treatment, and 
  • patients with rapidly evolving relapsing MS who cannot be treated with other medicines.

In addition, doctors must not give the medicine must to patients with liver injury.

It is not recommended for patients with autoimmune conditions other than MS. Medical professionals should be cautious when the give Zinbryta together with medicines that can damage the liver. Doctors are advised to monitor the liver function of patients to whom they give the medicine. They should closely watch patients for signs and symptoms of liver injury.

The EMA’s Pharmacovigilance Risk Assessment Committee (PRAC) has issued these provisional recommendations as a precaution and to ensure that Zinbryta continues to be used as safely as possible while a review of its liver safety is ongoing.

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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.

* * * * *

50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. 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.

 

European Medicines Agency recommends licence for cladribine (Mavenclad)

cladribine

The European Medicines Agency has approved cladribine (brand name Mavenclad) for use with multiple sclerosis.

The agency has recommended that a licence should be granted, by the European Commission, for the treatment of highly-active relapsing MS. Cladribine is currently an anti-cancer drug under the brand names Leustat and Litak.

The next step in the process is for the European Commission to grant a licence.

As far as the UK is concerned, Cladribine will also have to be appraised by National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC). These organisations decide whether the drug will be available through the National Health Service.

NICE has already started the appraisal process in anticipation of a European licence being granted. NICE could publish its decision in February 2018. If NICE approves the use of cladribine, it could be available on the NHS as early as June next year.

The medication’s development has met mixed fortunes. Russia and Australia both approved it as an MS treatment in 2010 but Europe and the United States turned it down because of safety concerns.

In 2011, a licence application was refused because of concerns about a higher risk of cancer in people taking cladribine. However, in July last year, Merck announced that further research had found that there is no such increased risk and that the EMA had accepted a new licence application.

How to take cladribine

Patients take cladribine as a pill in two treatment courses:

  • In the first course, a patient takes cladribine pills for five consecutive days in the first month and for five consecutive days in the second month
  • The second course is taken 12 months later. Again a patient takes cladribine pills for five consecutive days in the first month and for five consecutive days in the second month

Cladribine was found to reduce the risk of relapses by 58%, compared to placebo, in large clinical trials. Also, it reduces the risk of increased disability.

Clinical trials reported main side effects include reduced white blood cell counts, which in most cases was mild or moderate, and infections including herpes zoster (shingles).

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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.

* * * * *

50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. 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.

Taking care of a partner with a disability can be a labour of love

Perhaps the most overlooked people in the world of disabilities are not the people living with ds abilities but those living with them – the husband or wife who take cares of their loved one.

They are the family carers who devote so much of their lives doing all sorts of things which can include dressing them, feeding them, washing them and even assisting with toileting needs.  And a that, and more, adds up to great deal of hard work.

My beloved Lisa pushed me in my wheelchair around New York City in December 2014. Here we are at te top of the Empire State Building.

My beloved Lisa pushed me in my wheelchair around New York City in December 2014. Here we are at the top of the Empire State Building.

As I have multiple sclerosis, my loving wife Lisa is also my carer. She fastens buttons, puts on my socks, helps me to shower, makes sure I can eat the food on my plate with my one good hand, does all the housework without assistance and takes care of the garden. What’s more she pushes me around in a wheelchair.

Lisa is reluctant to be labelled as a carer, however, saying that she looks after me out of love as my wife. I am sure many husband and wife carers feel exactly the same way.

Each caring situation is unique and carers have many different needs.  They may need information about entitlements, services and individual and group support and social opportunities.  In the UK, every family carer can also undergo a Carers Assessment which could open up many opportunities for them including time out from caring, sitting services and physical help with their caring role.

By joining a carers’ support group, they can socialize with their peers and get help with their entitlements to benefits and services, breaks, education or employment.

And they can get help to access grants and benevolent funds so that they can buy items which will benefit them in their caring role.

Really important, though, carers can join a carers’ support group where they can have a chat and get a chance to meet new friends.

 

new strap