MS guide to ins and outs of bathrooms


My thoughts are in the pan today, prompted by an excellent article by Ellie B in Modern Day MS. In it, she addresses bathroom issues that many of us with MS encounter such as, but not restricted to, bladder problems.

Ellie writes:

bathroomMany of us know that MS comes with a whole slew of bathroom issues. Bladder dysfunction, which occurs in at least 80 percent of people with MS, happens when MS lesions block or delay transmission of nerve signals in areas of the central nervous system. The central nervous system is responsible for the bladder and urinary sphincters.

She continues:

An overactive bladder that is unable to hold the normal amount of urine, or a bladder that does not empty properly can cause symptoms that include unfun things.

Such unpleasantness includes:

  • A frequent and urgent need to go, right then and there. Yeah, been there, done that. In fact, still do that.
  • A slow start after all of that urgency. It is extremely frustrating when that happens.
  • Frequent peeing during the night. I could set my clock, I wake every two hours and, due to mobility issues, use a urine bottle I keep by the bed.
  • The inability to fully empty that bladder. If only I could, it’s aggravating to have to go again so soon.
  • Accidents – not making it to the bathroom in time. Oh, I know, it’s happened to me in the past. Fortunately, medication,  better planning, a urine bottle in the car, and pads, have stopped it happening again.

Not just bladders but bowels too

Ellie says that bowel dysfunction is also an issue. It is, and can take the form of:

  • Constipation. Tell me about it. I need to take doses of laxative three times a week.
  • Diarrhea. This is one problem that I don’t have.
  • Loss of control of the bowels. Not really my problem but urgency can be an issue at times.

Ellie continues:

None of it is pretty, pleasant or fun for us or the people close to us to deal with. It makes those of us with MS master location scouts. We will have the nearest bathroom and exits in eyesight within moments of our arrival. If we’re lucky, our people are master scouts as well.

There are a few things non MSers need to know about using the bathroom:

  • Yes, we know we just went. We really do need to go again.
  • No, we don’t think drinking less water would help. Actually, it’d make the whole situation worse. Then we’d be sick for different reasons.
  • Don’t joke and tell us to wear a diaper. It’s not funny. We probably already know that. We might already be in one.
  • Don’t look at us funny for using the accessible stall. With MS, we often have a wide gait and other mobility issues. We need the extra space, the higher toilets and the handrails. Yes, we know we often don’t look like we really need them. Don’t fuss at us.

Well said Ellie.

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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 stated.

Now Ocrevus blocked from health service in Scotland

Hot on the heels of NICE rejecting Ocrevus (ocrelizumab) as a treatment of PPMS by the National Health Service (NHS) in England, it has been blocked as a therapy for relapsing MS in Scotland.

The Scottish Medicines Consortium (SMC) says it does not consider ocrelizumab to be cost effective for the NHS in Scotland  as a treatment for relapsing MS in comparison to the existing disease modifying drugs. The SMC states that Roche, parHot on the heels of NICE rejecting Ocrevus (ocrelizumab) as a treatment of PPMS by the National Health Service (NHS) in England, it has been blocked as a therapy for relapsing MS in Scotland.ent company of Genentech – the manufacturer of the drug, did not present a sufficiently robust economic assessment of the drug’s use for it to be accepted. 

MS organisations in the UK have been quick to react. The MS Trust issued a statement that it is very disappointed in the SMC’s decision.

It added: “We anticipate that Roche will continue to work with the SMC with the aim of changing this initial decision. We also understand that the SMC submission for ocrelizumab for primary progressive MS has been withdrawn.”

Ocrevus first to slow PPMS progress

ocrevusMS Trust’s director of development, Jo Sopala, said: “We are very concerned at the continuing delay for people with MS to access ocrelizumab in Scotland.  For people with relapsing MS, it expands the range of MS treatments by offering a different dosing schedule, a different mode of action, minimal monitoring and a low risk of side effects compared to existing disease modifying drugs. 

“In primary progressive MS, ocrelizumab is the first treatment which has been shown to slow down progression.  We will continue to make the strongest possible case for NHS Scotland approval of ocrelizumab for both relapsing and primary progressive MS. 

Certainly, all is not lost as NICE initially made the same decision, for the same reason, about the use of Ocrevus to treat relapsing MS in England. Then, last month, after some negotiations on price, recommended its use. Now it has blocked its use for treating PPMS.

Now, we can look forward to further negotiations which I am sure will lead to the eventual approval of Ocrevus by NICE and SMC – for both types of 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, 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 stated.

Ocrevus blocked again, this time for PPMS, as not cost-effective

 

So, news came out last week that the UK’s National Health Service will not be providing Ocrevus for treating primary progressive MS (PPMS) in England*. But, panic not, the decision is far from being set in stone.

ocrevusWhy is this? Because the decision by the National Institute for Health and Care Excellence, (NICE), was that Genentech’s Ocrevus (ocrelizumab) did not meet its “value for money” criteria as a PPMS treatment. This was despite the fact that NICE’s evaluation committee agreed it is a “step change” for these patients.

The thing is that NICE has a history of reversing initial decisions, once it negotiates a lower purchasing price that makes the drug cost-effective.

Only last month, NICE reversed an earlier decision regarding relapsing-remitting MS (RRMS) patients, and recommended Ocrevus be included in the NHS.

The decision was made after Genentech negotiated with NICE and reached agreement on an undisclosed price for the infusion treatment, which apparently sells in the US at an estimated annual list price of $65,000.

That’s exactly what I expect to happen this time.

A cynic (who me?) might suggest that NICE has made its two decisions to oppose the use of Ocrevus purely to obtain the drug at a lower price.

* Decisions about the availability of drugs for the other parts of the UK, namely Scotland, Wales and Northern Ireland, are made by different organisations.

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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 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 stated.

Banned, but why? Facebook gives no reason


I am prompted to write that, despite an absence of new posts, I am as well as I can be. I have no health problems beyond multiple sclerosis.

Messages have reached me, asking if everything is ok, such as this one:

Hi, it’s (name removed for privacy). Facebook has not had any of your current writings, so I want you to know you are in my prayers.

The absence of my posts was not caused by any personal reasons but was enforced by Facebook itself. I use it to send my posts to groups of which I am a member but, three times in as many weeks, I have been interrupted by a message saying: “You are restricted from joining and posting to groups that you do not manage until (date and time).

No reason is ever given and the powers that be won’t discuss it with you. You can click on ‘Appeal’ but experience tells me not to bother. Why? Because, if you do, no reply is ever received and the restriction, effectively a ban, is just made longer. The fact is simple, Facebook has the ability to do what it likes and we, its users, have no rights to protest or even ask questions. [I feel another ‘restriction’ will be coming for expressing this truth].

Back until banned again

I explained the situation to everyone who contacted me and this was one response I received via Messenger:

That’s awful. I’m technology challenged, but I knew something was wrong. Thanks for letting me know.

I wish you could sue Facebook for discrimination.

God bless you and your family. Stay strong. Thank you for all your hard work.

Right now, I am back and will continue to bring you news and views – until Facebook decides to ban me again.

Whether you have MS or another health problem, if you have a disability, 50shadesofsun.com is here for you. And, there is no greater support you can give than to share my posts far and wide via every social media.

You can also join a Facebook page that I do manage (and so are exempt from any ban), such as 50shadesofsun or Living with multiple sclerosis.

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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 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 stated.

Government minister’s welfare benefits statements prove economical with the truth

Sarah Newton, one of two ministers of state at the department for work and pensions (DWP), was in the centre of a heated debate in the House of Commons, this week.

The Canary, a website dedicated to independent campaigning journalism, reported that she made some staggering claims. It went on to question how many of them were true. Those of us with disabilities, resulting from MS and other causes, know that the answer will be ‘very few´.

The debate was about a report by the UN committee on the Rights of Persons with Disabilities (UNCRPD). The report said successive UK governments had committed “grave” and “systematic” violations of disabled people’s human rights. The chair of the committee said the government had created a “human catastrophe” for disabled people.

newton

Sarah Newton MP.

In the debate, Labour accused Newton and the government of making disabled people a “forgotten class”; of allowing the DWP to ‘endlessly mistreat’ them, and of creating a “national scandal”.

Newton dismissed Labour’s assertions. She said: “Let’s actually deal with the facts of the situation, and stop this really quite irresponsible talk that we hear in the chamber today…”

But, it seems that Newton and “the facts” don’t go hand in hand. No surprise that DWP politicians are always ready to brush unpleasant, but genuine, facts under the carpet. They are past masters of spouting their own version of the “truth”.

The Canary went through her comments and fact-checked them. Of course, it found that Newton statements were, to put it politely, economical with the truth.

Time to check the genuine facts

So, let’s look at the real truth!

CLAIM: Newton: “I utterly refute the allegations that have been made today: that we are discriminating against disabled people; that we are systematically undermining and violating their human rights, or worst of all that we are targeting their… welfare support…”

FACT: The High Court ruled in December 2017 that aspects of the Personal Independence Payment rules were “blatantly discriminatory”. It then ruled again on June 14 that aspects of Universal Credit’s implementation had been ‘discriminatory’.

Additionally, a tribunal found the DWP had discriminated against one of its own workers, who was disabled, awarding him £26,000 in damages.

The Canary also pointed out that besides the UNCRPD, the UK government has been accused of breaking international treaties and violating disabled people’s rights by the UN Human Rigth Committee on Economic, Social and Cultural Affairs and the European Committee of Social Rights (part of the Council of Europe).

Meanwhile, the UNCRPD report said government policies had become “life-threatening to many disabled people”.

CLAIM: Newton said that the government was “very disappointed” that the UNCRPD did not take on board… the evidence that the government gave them. They did not acknowledge the full range of support.

FACT: The UNCRPD report was overarching in the evidence it took on board. However, it condemned the UK government’s attempts to misrepresent the impact of policies through “unanswered questions”, “misused statistics”, and a “smoke screen of statements”.

Equality Act fails disabled people

CLAIM: Newton said:I want to reassure everyone that we have very strong legislation… on our statute book to protect disabled people – that’s through the public sector equality duty in the Equality Act 2010…”

FACT: Just one example of the implementation of the Equality Act 2010 failing disabled people is the UK rail network. Disabled people’s organisations, trade unions, and commuter groups have argued that the train operator’s policies breach the act. Their claims have been largely ignored.

Newton then had to answer a question from Labour’s shadow secretary for work and pensions, Debbie Abrahams. Abrahams asked why the government had not done a cumulative impact assessment of all welfare reforms.

CLAIM: Newton said: “We do undertake a cumulative assessment of reforms, each fiscal event. This is because we want to be as transparent as possible regarding the cumulative distributional impacts of government policies, including welfare reforms, tax changes – direct and indirect – and public spending changes.”

FACT: This is not the same as doing an impact assessment of the combined effect of every cut, reform, and change on disabled people. The government is merely giving itself individual snapshots.

Poverty level  figures not all they seem

CLAIM: Newton said that the proportion of people in a family where someone is disabled… in relative poverty has not risen since 2010.

And that the proportion of people in a family where someone is disabled, who are in absolute poverty, is at a record low…

FACT: The government admits that changes it made around 2011, to how disabled people are identified, could affect poverty measures. Also, the government does not include in its poverty figures the average additional £570 a month costs disabled people face because of their impairments. Moreover, the government’s measure for absolute poverty is different to that of the UN, and different again to a measure the House of Commons Library used in a briefing paper.

Newton’s claim of no rise in poverty is even different to the DWP’s own figures, which show the number of disabled people in relative poverty has risen since 2010 [source: the Joseph Rowntree Foundation].

CLAIM: Newton said: “These allegations, that we are driving people to the food banks and forcing people into destitution, is simply an irresponsible statement.

FACT: The government’s National Audit Office says Universal Credit is driving people to food banks and throwing them into rent arrears.

CLAIM: Newton said: “We’re spending over £50bn a year on benefits to support disabled people and people with health conditions.”

FACT: The amount the government spends on disability benefits is actually £39bn. Full Fact says the £50bn figure is from 2012, and includes adult social care, free travel, and home adaptations

UK actually fifth in G7, not second

CLAIM: Newton said that the £50bn was: “up by £7bn since 2010, and it’s around 2.5% of GDP – over 6% of the government’s spending. Now as a share of our GDP, our public spending on disability and incapacity is the second highest in the G7…”

FACT: This is a selective use of statistics, as it also includes some NHS spending. The Office for National Statistics reported on EU “social protection” figures. The UK actually spends less than Norway, Germany, Spain and France on disability benefits.

CLAIM: Newton said: “There is no freeze on the benefits that people with disabilities have received…”

FACT: Tax-free disability benefits like the Personal Independence Payment (PIP) have been rising. But the “work-related activity” part of Employment and Support Allowance has been frozen since 2015. 391,000 people, many of them sick and disabled, are in this group.

CLAIM: In closing Newton summed up by accusing Labour and the Scottish Nationalist Party (SNP) of fearmongering and not dealing in facts.

She said: Who’s going to suffer? Who’s going to suffer from what… we’ve been hearing from the opposition today?

FACT: It is going to be disabled people and their families, who are going to be frightened – frightened to come forward and get the benefits that are there for them; frightened to come forward and get the support that’s available to them.

The Canary said: “Newton either displayed staggering delusional behaviour or wilful ignorance.” I agree but would describe both as shameful. Worse, the same descriptions can be applied equally to the government as a whole.

Interestingly, but unsurprisingly, The Canary says it contacted the DWP for comment but received no response by the time of publication.

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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 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 stated.

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.

* * * * *

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.

* * * * *

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

A helping hand so readily offered to wheelchair-users

I never cease to be surprised by the willingness of people to offer a helping hand.

Regular readers will know that, because of mobility problems resulting from multiple sclerosis, I use a wheelchair.

Several times recently when out and about in my wheelchair, while Lisa stayed at home, members of the public have been read to offer assistance.

It is never strange when store staff lend a helping hand but I really don’t expect it from fellow shoppers – but that is what has happened.

a helping handIn a local supermarket, other shoppers have:

  • Unloaded my shopping cart;
  • Helped pack the goods into the bags;
  • Taken my shopping to my car;
  • Placed the bags into my car.

On Friday, I needed to go to the bank. Not a difficult job in most circumstances, even when using a wheelchair – but it is not so easy in our local town, Cuevas del Almanzora. Here, in sunny Andalucía in the south of Spain, we have to overcome problems associated with accessibility ramps.

Access can benefit from a helping hand

They do exist but the engineers who make them often miss the fact that they are supposed to drop down enough to make a smooth transition from road to sidewalk. Here, the ramps often leave a small kerb (curb in American English) to overcome. Then there are thoughtless drivers who park across the ramp, making it useless.

Of course, there are places where accessibility rams just don’t exist. Outside the bank being one such example. So, on Friday, I chose the lowest possible step up and, by tilting my wheelchair backwards, managed it. But a passing motorcyclist stopped and rushed to help – perhaps unnerved by the awkward backwards tilt. Still, he didn’t leave m side until I was safely in the bank.

Returning to my car after venturing out, it is relatively easy for me to place the wheelchair inside but it does require some effort. And that’s why, I am always grateful when a passer-by offers to help. Yes, I could persevere and complete the job by myself and, more often, it is what I do. However, when help is offered, I don’t want to appear rude by turning down their kindness.

My desire for independence does not stop me accepting offers of assistance. Do you feel the same way?

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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 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.

* * * * *

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 stated.