UA-79233833-1

50shadesofsun

News and Opinions about MS, Health & Disability

Mobility scooters: A question of cruising

Cruise lovers have widely differing opinions about the use of mobility scooters on board ships. And that affects everyone with mobility difficulties, whether caused by a disease such as multiple sclerosis, injury, or even aging.

Their views are included as comments on a story appearing on cruise.co.uk website. They vary from calls for mobility scooters to be banned to criticism of such opinions, and points in between.

mobility scootersThe main problem seems to stem from a perception that some people choose to use scooters even though they do not have a mobility issue.

Cruise companies comply with disability equality laws and have their own accessibility policies. That’s why mobility scooters and wheelchairs are widely allowed, although individual cruise lines may have their own restrictions.

Some comments were against mobility scooters:

Jeanette Webster: They shouldn’t be allowed on cruise ships they take up to much room,plus they drive them to fast without care for others.

I have to disagree with a ban but mobility scooter users must do so with care and consideration for others.

Angela Hobbs Clarke: Why should we be inconvenienced by them? We pay a lot of money to cruise, and to be able to move about the ship without large scooters being parked in the halls. How would these disabled people get off in an emergency, and how would we able bodied passengers navigate round them in the dark.

Inconvenienced? People who NEED to use scooters are still people. They should be given access and treated equally. That is their legal right.

Paul Lavin: They are a lethal weapon they should be totally banned everywhere. People with genuine mobility problems should use a conventional wheelchair.

What a disgusting attitude. Everywhere? Really? Lethal weapons, indeed! And as for using a conventional wheelchair, what if they can’t use one? Maybe they are alone and don’t have the strength to get about unless someone pushes them?

Carol Hunter: We went on a cruise in May and there was a man driving round on his mobility scooter, making everyone get out of the way. In the evening, he would park it at the side of the dance floor, get up and have a dance with a few ladies. He’d then get back on his scooter and drive off!!

If this is true, I find such behaviour deplorable. From what Carol says, it would seem this scooter user’s mobility problems are not genuine.

Others spoke in defence of scooters:

Janice Derose: Why not? I’ve been on several cruises, no problem at all with them (scooters). People need a holiday, they shouldn’t need to stay at home just because people like you can’t show empathy. None of us are out of this world yet, maybe we should start saving for one.

Fair point.

David Haverty: One day you may well need one. Will you want to give up cruising? I don’t have one and don’t anticipate needing one in the foreseeable future, but feel compact scooters should be accepted, even if with restrictions on cabin choice or total number of scooters on board.

I agree, on both.

Diane Roe: I don’t drive too fast without a care for others. In fact, over the last few years I have noticed more ignorant able-bodied people who push in front and block the lifts, it works 2 ways!!

Scooter users who have disabilities are mostly accompanied by someone walking, so driving the scooter at walking speed is the norm. It’s true about the lifts/elevators. Able-bodies people can use the stairs, scooter users can’t.

Maralyn Lord: Anybody that says no – I hope that one day they don’t need them (mobility scooters) because whoever is using the scooter, the person with them is usually able to walk. Should they be denied a holiday on a cruise ship? Anybody who says yes (they should be denied a cruise), I hope that they never need to use one. Life is not easy. Should we stay at home because it causes a nuisance to people more fortunate than ourselves?

No one should be forced to stay at home and forego a cruise holiday just because they have reduced mobility and use a scooter.

And finally…

Janet Bottomley: My father takes his mobility scooter but only uses it when he goes ashore. He walks with a stick aboard. And if they only allow scooters in adapted cabins it naturally controls how many are on board.

Great that he’s able to do that.

I have cruised, successfully, using both a manual wheelchair and a scooter. Next time, I’ll will use my folding electric wheelchair that I am confident will give me the best of both worlds.

Happy cruising to all.

* * * * *

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 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.

 

5 Comments »

Lumbar puncture can be a real pain in the ….. head

Just the other day, I was thinking back to the mid-1980s. That was the time that I underwent a lumbar puncture, also called a spinal tap, at a leading London hospital. At the time, I had some symptoms linked to an unknown problem with my nervous system. This had led doctors to order the test. 

Of course, lumbar puncture results help neurologists diagnose multiple sclerosis and other issues with the immune or nervous systems. However, those results are not enough to be used in isolation. A full diagnosis of MS also needs an MRI and Evoked Potentials, as well as looking at symptoms and medical history.

lumbar punctureThe lumbar puncture is a procedure where a needle is inserted into the lower spine to withdraw some cerebrospinal fluid. This fluid surrounds your brain and spinal cord. The main job of this fluid is to cushion the brain and spine.

While tests on the fluid are a good indicator, they cannot make a firm determination of MS. In fact, some people who are later given an MS diagnosis have no abnormalities in their lumbar puncture results. Indeed, the USA’s National MS Society says that 5-10% of MS patients show no problems.

Negative lumbar puncture results don’t mean no MS

That’s exactly my experience. The results of my lumbar puncture in the 1980s were negative and led to a nonsense diagnosis. Doctors decided, then, that I leant excessively on my elbows and sat too often with my legs crossed.

Seventeen years later, when I received my diagnosis of MS, the neurologist said he was 99% certain. He explained that he could not be 100% sure without a new lumbar puncture.

No way. I recalled the horrors of my first time. The awful headache pain that lasted three days, three days in which I couldn’t stand or walk. I could only lie down.

lumbar puncture

It’s vital to rest well after your lumbar puncture.

I am assured that not every lumbar puncture ends that way. It seem that some people may have a much easier time, but the risk of pain is still there. So, if you have a lumbar puncture coming up, be sure to listen to your doctors and get plenty of rest afterward.

Some people say that you can return to work if your work is not physically active. I disagree. I did go to my office in the afternoon but was unable to work owing to the terrible pain. The lesson is clear, don’t do what I did. Instead, rest and take a painkiller that includes acetaminophen.

* * * * *

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 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.

No Comments »

Bill to legalise medicinal cannabis clears first hurdle, but will it go further?

Campaigners for the legalisation of medicinal cannabis are this week celebrating a small victory. Legalisation could help people with multiple sclerosis and other diseases but, realistically, there’s little chance it will become law

cannabis

Paul Flynn MP.

Paul Flynn, Labour MP for Newport West and patron of the United Patients Alliance (UPA) presented a 10-Minute Rule Motion in the UK parliament’s House of Commons. Its purpose is to legalise the use of cannabis as a medicine.

UPA supporters, who gathered outside, took delighted when the bill gained its first reading. This is the first step on a long journey of any bill to pass into law.

The UPA aims to make sure everyone who might benefit from cannabis, to improve their quality of life, have access to it without the risk of criminalisation or stigmatisation.

Its website says: “We would see a legal, regulated supply of cannabis for patients so that they can use it safely, with knowledge of strain and dosage and with the best knowledge on healthy modes of intake and ways of medicating with cannabis.”uld see a legal, regulated supply of cannabis for patients so that they can use it safely, with knowledge of strain and dosage and with the best knowledge on healthy modes of intake and ways of medicating with cannabis.

In pursuit of this, the UPA organised a peaceful demonstration outside parliament, in the form of a ‘cannabis tea party’. It highlighted how the drug acts as pain relief for those with chronic and fatal illnesses.

The UK currently bans the use of cannabis for medical purposes. Sativex spray is the only exception.

Across the world, medicinal cannabis, or marijuana, is legal in many places including Canada and Uruguay. It is also legal in a number of states in America as it in some European countries.

Legalising cannabis – intelligent and compassionate

Flynn joined the tea party, and said: “We have to say to the government, for goodness sake, catch up with the rest of the world and allow a responsible legal market to operate to replace a market that’s illegal and dangerous.

cannabis“It’s political cowardice, they’re afraid of being mocked on this, but I’m afraid politicians don’t get credit for acting intelligently. This is the intelligent and compassionate thing to do. The law is an ass.”

Flynn has named his proposal The Elizabeth Brice Bill, named after a multiple sclerosis patient who died in 2011. She has been a long-time campaigner for legalising cannabis for medical purposes and started the UK branch of the Alliance for Cannabis Therapeutics. She and Flynn are said to have drunk cannabis tea together, in parliament, many years ago.

The next stage of the lawmaking process is the Second Reading. This has been set for Friday, February 23.

Bills introduced by MPs under the Ten-Minute Rule don’t often progress much further. Most stimulate publicity for, or seek the house’s opinion about, an issue which may later feature in another bill.

However, not all Ten-Minute Rule bills fail. Some do become law. Indeed, since 1945, more than 60 of them have become Acts of Parliament.

Perhaps, one day, UK drug laws may change but don’t expect Paul Flynn’s bill to achieve that. Sadly, there are too many MPs prepared to oppose it.

* * * * *

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 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.

 

2 Comments »

A view from the ground: Understand and cut risks of falls

I fall, you probably fall. In fact, anyone with mobility issues that include problems with balance is more than likely to fall from time to time.

fallsAnd that’s how I came to find myself sitting on the ground beside my car. My knee gave way as I was trying to transfer to the car from my wheelchair.

This happened just two days ago, after Lisa and I left a restaurant to head home. I tried and failed to get up, both by myself and with help. Then a police car pulled up and the two officers helped me to my feet.

That’s when things became a bit confused. First were communication problems as my basic Spanish language skills matched with one officer’s basic English abilities.

Anyway, after I established that alcohol was not involved, I explained that I had “esclerosis multiple” (pronounced ‘mool-ti-play’). So far, so good – but it became evident that police training does not go as far as MS. Despite my protestations, they wanted to ship me off to hospital and, so, called an ambulance.

At least the ambulance team understood MS, and quickly realized I did not wish to go to hospital. They explained the situation to the police, and said that I was ok to drive. Then we were on our way.

Overall, I felt that the whole experience may have been frustrating but I cannot fault the care from either the police or ambulance crew.

Give falls more thought

All that got me to think about last Friday (September 22) being Falls Prevention Awareness Day in the US. This is designed to encourage people with multiple sclerosis and others who are likely to fall to give more thought to why we fall.

Although the awareness day is coordinated by the National Council on Aging, the National Multiple Sclerosis Society (NMSS) this year presented research into MS-related falls, as well as resources to identify risk factors of falling.

This included the fact that typical MS symptoms, such as poor gait and balance, or the loss of perception of where body parts are, all contribute to your falls. These often happen at home, while you do everyday activities.

According to the NMSS, neurological symptoms are not the only factors as psychological issues are another risk area.  Further, fear of falling, overconfidence, or inactivity can also be factors.

“As MS changes over time and walking becomes more difficult, you may find that you resist accepting help,” the NMSS writes in its guide for minimizing the risk of falls.

It says: “Being able to walk confidently and independently is important, so the idea of losing that independence may be frightening. Tools and tips that can prevent future falls will help to keep you more independent rather than take your independence away… being receptive to them is half the battle.”

Another plus is that the NMSS has also developed the Free From Falls program. This contains eight modules with webinars, downloadable educational material and video-guided exercises.

These materials teach people like you and me about the various risk factors, and also offers tips and strategies to reduce the risk of falls.

I, for one, will be paying close attention.

* * * * *

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 Clinical 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.

1 Comment »

Gene therapy prevents, even reverses, MS in animal model – new research

Multiple sclerosis can be inhibited, or even reversed, according to University of Florida researchers. They used a novel gene therapy technique that, they claim, stops the disease’s immune response in mouse models.

Obviously, if that can be reproduced in humans, it has the potential to be wonderful news.

The researchers paper is “Gene Therapy-Induced Antigen-Specific Tregs Inhibit Neuro-inflammation and Reverse Disease in a Mouse Model of Multiple Sclerosis”. Molecular Therapy published it last week.

gene therapyBy combining a brain-protein gene and an existing medication, researchers were able to prevent the mouse version of multiple sclerosis. Likewise, the treatments produced near-complete remission in the animal models.

Researchers said that their findings have significant potential for treating MS and other autoimmune disorders.

The paper says researchers used an adeno-associated virus, to deliver a brain protein gene into the livers of mouse models. The virus sparked production of so-called Tregs (regulatory T cells), which suppress the immune system attack that defines multiple sclerosis. The gene targeted the liver because it has the ability to induce immune tolerance.

Brad E Hoffman PhD is an assistant professor in pediatrics and neuroscience at the University of Florida College of Medicine. He said: “Using a clinically tested gene therapy platform, we are able to induce very specific regulatory cells that target the self-reactive cells that are responsible for causing multiple sclerosis.”

Encouraged by longevity of gene therapy

Hoffman says he Is encouraged by the longevity of the gene therapy. Mouse models treated with gene therapy showed no signs of disease after seen months. He compared It with a group of untreated mouse models that had neurological problems after 14 days.

The protein was combined with rapamycin — a drug used to coat heart stents and prevent organ transplant rejection — and researchers found its effectiveness was further improved.

We chose this drug because it allows helpful regulatory T-cells to proliferate while blocking undesirable effector T-cells, Hoffman said.

Further research is needed before tests of the therapy in humans are carried out in a clinical trial, Hoffman said. Researchers also need to target the full suite of proteins that are implicated in multiple sclerosis, he added.

Still, Hoffman said he is extremely optimistic that the gene therapy can be effective in humans.

“If we can provide long-term remission for people and a long-term quality of life, that is a very promising outcome,” he said.

The research was funded by grants from the National Multiple Sclerosis Society, the National Institutes of Health and the Children’s Miracle Network.

My view is that while it is still early days, the results so far seem very encouraging. I look forward to learning about further developments as time progresses.

* * * * *

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 Clinical 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.

No Comments »

HSCT is superior to DMTs say Swedish researchers

At last, independent researchers have endorsed autologous hematopoietic stem cell tranplantation (HSCT) as a treatment of choice for multiple sclerosis.

Well, treatment for relapsing MS, anyway.

The study “Autologous haematopoietic stem cell transplantation for neurological diseases” was published in the Journal of Neurology, Neurosurgery & Psychiatry. In it, Swedish researchers, from Uppsala University, say autologous HSCT is superior to currently approved disease modifying therapies (DMTs).

hsctOn top of that, they say, in the study, that procedure’s safety profile has improved, and is now just as good as approved medications.

So far, so good. But, from my point of view, it is only a start. The report says that the benefits of stem cell transplants for patients with progressive MS is moderate at best.

I don’t agree with the suggestion that attempts to use HSCT to treat people with progressive MS should be limited to clinical trials. The treatment is more effective with the relapsing form, but it is also successful in tackling the progressive types.

Now, we need HSCT to be approved for treating MS by the FDA and regulatory bodies around the world. We have been waiting long enough.

No evidence of disease activity (NEDA) is now a serious indicator in studies of MS therapies. It is a comprehensive measure that takes into account disease activity in MRI scans, the presence of relapses and disability progression.

HSCT scores better at NEDA

A number of studies showed that 68 to 70 percent of patients maintained NEDA four to five years after HSCT. In comparison, of DMT patients treated at Boston’s Brigham and Women’s Hospital, only 7.9 percent had NEDA at seven years.

Meanwhile, in clinical trials of newer drugs such as Tysabri (natalizumab) or Lemtrada (alemtuzumab), only 32 to 39 percent of patients maintained NEDA at two years.

Researchers noted that clinical trials or other studies of Tysabri or Tecfidera (dimethyl fumarate) found no improvements in patients’ health-related quality of life.

Meanwhile, one study of transplanted MS patients showed an improvement of nearly four times what is considered as a clinically meaningful improvement at two years. Improvements were in both physical and mental health.

So, HCST:

  • is superior to DMTs
  • is as safe as DMTs
  • achieves ‘no evidence of disease activity’ with more people and for longer than other therapies

What more do we need to know?

* * * * *

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 Clinical 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.

1 Comment »

Impact of MS on life need not always be negative

MS does impact my life. That may seem to be an obvious statement but let’s look a little deeper. There is more to this than meets the eye.

Yes, of course, this disease has many negative impacts on me, my life and my loving wife Lisa. But not every impact is necessarily negative. What? I hear you ask, have I found some ways in which MS has had a positive effect?

The answer has to be ‘yes’, no doubt about that.

Naturally, I can only talk about myself and not everyone’s experience will be the same. But, hey, that is multiple sclerosis – where no two people have exactly the same symptoms.

My symptoms mainly impact my mobility and balance so, outdoors, I need mobility aids. I use a rollator (basically a walker on wheels with brakes and a seat on which to rest) for short distances and a wheelchair for anything longer. I also have to cope with urinary urgency and continence issues.

So, what ‘positives’ can I draw from having MS?

Positive impact

There are many, including:

  • meeting a host of people, both in person and by telephone or online, that I would otherwise not have met;
  • new and often unexpected friendships;
  • writing for both MS and medical online publications;
  • using an electric powered wheelchair to restore some independence and to give Lisa a break from pushing me around;
  • visiting Moscow, somewhere I never thought I’d go, to check out its HSCT centre. My existing (non-MS) health did not make me a suitable candidate but the visit was worthwhile. And I saw the Kremlin, Red Square, the home of the Bolshoi Ballet, the former headquarters of the KGB, and more;
  • avoiding queues, or lines. From Radio City Music Hall, New York, through getting on and off cruise ships, to taking commercial airline flights, wheelchair users are given special and welcome treatment;
  • courteous treatment. Wherever I go, staff of shops, restaurants, everywhere are only too happy to help. And, more than that, even members of the public are willing to open doors, clear a way for me, and generally offer assistance.

These are just some examples. It’s by no means meant to be an exhaustive list.

Someone I have known for some time asked me the other day: “Surely, you don’t mean that you feel good about having MS?”

No, of course I don’t. Naturally, I’d be much happier to have a clean bill of health. But, as that isn’t the case, let’s make the best of it.

MS is not a reason to give up.

We are warriors. We must all look for the best in life and fight on.

* * * * *

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

* * * * *

impact50shadesofsun.com is the personal website of Ian Franks, a Clinical 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.

2 Comments »

I said it 14 months ago, now researchers agree: MS is linked to ‘mono’

Great news. Science now backs my view, published here on July 14 last year, that MS is linked to glandular fever. The Epstein-Barr virus (EBV) causes mononucleosis or just mono, otherwise known as glandular fever. Researchers have just uncovered what they describe as a biological link between EBV and MS.

Fourteen months ago, in this blog, I posted an article titled MS is linked to Glandular Fever, I have no doubt: In it, I wrote:

“In my mind, MS is linked to glandular fever. From personal experience, there is no room for doubt of any kind.

“Trouble is, though, that my experience and belief is not proof. And that is why I find that efforts to establish a definite link between glandular fever, often known as the kissing disease, and MS is an exciting area of research.”

And that’s what they have now done.

biological link

Dr Annette Langer-Gould (pic: Kaiser Permanente Research).

Researchers led by Dr Annette Langer-Gould1 have now found a link between EBV and MS in three racial-ethnic groups. African-Americans and Latinos showing a higher risk for MS than Caucasians.

The research study, “Epstein-Barr virus, cytomegalovirus, and multiple sclerosis susceptibility,” was published in the journal Neurology.

In the past, other studies have suggested that EBV infection, which causes mononucleosis/glandular fever, increases the risk for MS.

Strong biological link

“Previous studies that have found a link between mononucleosis and MS have looked primarily at white populations, so for our study, we examined whether there was a similar link for other racial groups as well,” Dr Langer-Gould said in a press release. “Indeed, we did find a strong biological link for all three racial groups.

“While many people had Epstein-Barr virus antibodies in their blood, we found among all three groups, people who also developed mono in their teen years or later had a greater risk of MS. Delaying Epstein-Barr virus infection into adolescence or adulthood may be a critical risk factor for MS,” she said.

Recently, infection with cytomegalovirus (CMV), has been controversially linked to increased risk of MS. But researchers report that there was NO link for CMV. Instead, they found an inconsistent association across racial-ethnic groups. Antibodies against CMV are associated with a lower risk of MS, or clinically isolated syndrome, in Latinos. But this was not the case in African-Americans or Caucasians.

Overall, the researchers say that their results point to a strong biological link between EBV infection and MS. The say the results also highlight how understanding of the factors underlying MS can be greatly improved by multiethnic studies.

“Studies like ours that include participants from multiple racial groups can be a strong tool to test for biological risk factors, especially when the frequency of exposures to biological factors like Epstein-Barr virus and mononucleosis differ between groups. If the findings were not the same across all groups, it would be less likely that a link would be biological,” Langer-Gould said.

* * * * *

1 Annette Langer-Gould, MD, PhD, is a Research Scientist in the Department of Research & Evaluation and serves as Regional Physician Multiple Sclerosis Champion at Kaiser Permanente Southern California. She is a practicing MS specialist at Los Angeles Medical Center.

Her epidemiologic research focuses on the role of vitamin D, genotype, race/ethnicity, and MS susceptibility, as well as predictors of prognosis and comparative effectiveness of MS therapeutics.

Dr Langer-Gould also leads a team developing, implementing, and evaluating programs to provide high-quality affordable care for individuals with MS.

She serves as co-chair of the Choosing Wisely Committee. She is a member of the Guidelines Development, Dissemination, and Implementation Subcommittee for the American Academy of Neurology. Additionally, she is a member of the National MS Society’s MS Prevalence Workgroup.

* * * * *

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 Clinical 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.

5 Comments »

Government figures prove UN’s human catastrophe verdict

Shocking new figures underline the facts behind a UN committee’s decision to describe UK welfare benefits as a human catastrophe.

And the figures come from the government’s Department for Work and Pensions (DWP). Not that they were provided willingly. The MS Society forced them out by a freedom of information request.

During the first three years of Personal Independence Payment (PIP), people with MS have lost at least £6 million a year in benefits, according to the society. PIP started to replace Disability Living Allowance (DLA) in 2013.

The Department for Work and Pensions admitted that between October 2013 and October 2016:

  • almost one in three people (2,600) with MS who received the highest rate mobility component of DLA had their payments cut after they were reassessed for PIP.
  • nearly a quarter (800) who received the highest rate for the care component of DLA had their payments cut after being reassessed for PIP.

System doesn’t make sense

reassessed

Genevieve Edwards (pic: MS Society).

MS Society director of external affairs, Genevieve Edwards, said: “These staggering figures show how PIP is failing some people with MS who need the highest level of support.

“It doesn’t make sense that people are losing money they once qualified for, when they are living with a progressive condition.” I agree, the disease gets worse progressively, not better.

The society is rightly worried that many people no longer get what they were entitled to, and should still be able to claim. Their individual situations are no better but their care benefits have been cut.

One problem is when people are unable to explain the reality of living with MS when reassessed for PIP. And assessors, who are of dubious quality, rarely understand how unpredictable it can be.

Harder to get highest rate mobility under PIP

Additionally, it’s now also harder to qualify for the highest rate of mobility support for PIP. And that’s what you need to take advantage of the Motability car scheme.

Before the changes, under the DLA claimants wouldn’t receive the highest level of support if they could walk more than 50m. Now, under PIP, they won’t get the higher rate if they can walk more than 20m – including the use of sticks or walking aids, if needed.

Exactly what the basis of that change is, I just don’t know but it is unfair. Interestingly, on May 4 last year Baroness Altmann, then minister of state at the DWP, said in the House of Lords: “I would like to clarify what appears to be a widespread misconception regarding the differences between the mobility assessment in PIP and the mobility assessment in DLA. (See my post of May 16, 2016, Disability: There is no 20-metre rule, says minister).

“Many noble Lords have spoken of a ‘20-metre rule’, but there is no such rule. Some people believe that we have changed the assessment of a distance a claimant is able to walk from 50 metres to 20 metres. This is not the case.”

What a load of absolute codswallop.

  • Have the requirements changed between being assessed for DLA and being reassessed for PIP? YES.
  • Is the cut off for highest rate mobility payment now being unable to walk 20m instead of 50m? YES.
  • Did Baroness Altmann lie? Well by archaic tradition, she cannot be accused of lying as she made the statement in the House. She can only be guilty of “misleading the House”. It is clear, she did mislead the House.

Now, what is a non-parliamentary term for deliberately misleading the House? Let me think. Oh yes, I remember, it is LYING.

Fix this broken system, MS Society demands

The MS Society is calling on the government to urgently fix “this broken system” and ensure PIP assessments reflect the realities of living with MS. I couldn’t agree more.

“Having MS is hard enough. It shouldn’t be made harder by a system that doesn’t make sense,” said Ms Edwards.

And so say all of us. 

* * * * *

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 Clinical 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.

 

No Comments »

Falls – the good, the bad, and the ……

Falls are a fact of life for people with multiple sclerosis or other disability that includes mobility and balance problems. But, those of us who take the tumbles know they are not all the same.

We divide them into bad falls and good falls. So, what is a “good” fall? How can any fall be good?

Well, from personal experience, I know that some falls can be thought of as good. I will try and explain.

falls First of all, there is the matter of injury. Any fall that incurs no more than bruises and scratches has got to be thought of as nothing to worry about. I have learned to relax and roll

Injuries, though, are not the only factor. Here I can only speak with my knowledge as a person with MS. I know that people without disabilities fall sometimes, and MS is not behind all my unscheduled meetings with the floor. After all, anyone can slip or trip.

Those of us who have MS know full well what can be blamed on the disease. In my own case, muscle weakness in my left leg can lead to my left knee giving way without warning. At other times, I cannot maintain my balance or am just too tired to move or stand up any longer.

These falls are all attributed to MS as it affects me. You may have other symptoms and effects. We all know, however, that every fall is bad if it is connected to MS.

However, other unplanned descents can be totally unconnected with the disability and so are “good” falls. These can include slips, trips, misjudging distances and so on.

Not all falls can be blamed on MS

Some recent mishaps in my life have included misjudging the distance to an ottoman and only half sitting on it, ending on the floor. Another time, I turned over in bed but was too close to the edge and so found the floor again. Both of these left me completely unhurt and helpless with laughter. Neither were linked to MS.

Another risk you have to look out for is moving obstacles, namely pets. In my case, we have three cats and two are good at keeping out of my way but the eldest (19½ years) doesn’t. Indeed, she manages to get right in the way and then stop – as though daring me to get past. So far, no accidents there but I have to stay alert.

* * * * *

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 Clinical 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.

No Comments »