Humour? We are falling over ourselves laughing

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When you live with a disability, whether through multiple sclerosis or another cause, humour can help. It may be a twisted form, but it’s still humour.

I find that, these days, laughter comes when it is least expected.

It can come after I end up on the floor at home, especially if that is because I misjudged the distance to a chair or a hand grip. Instead of sitting there and pounding the floor with my fist, while crying “Why me?”, usually I see the funny side and just laugh at my own predicament.

That’s not to say that I never ‘lose it’ and curse this damned disease but, normally, the laughter takes over. In fact, as if getting up from the floor isn’t difficult enough, often I have to wait until I can stop laughing. Then, and only then, can I begin to pull myself up again.

Out and about, I use a rollator to walk just a few yards, such as from our home to the car outside. For any longer journey, I rely on a motorized wheelchair.

That, in itself, can be another source of humour. My very first motorized mobility aid was a second-hand scooter that I bought on eBay. It opened up a whole new world but the inaugural trip wasn’t uneventful. In our local park, I messed up and almost ended up in the paddling pool. Fortunately, disaster was averted and Lisa and I ended up laughing at my near miss.

Bare butt humour

A couple of years ago, we were visiting Lisa eldest sister who lives in New York state, about a half hour train ride from the city. We enjoyed a meal with sister Gen, her husband, three children and two of her grandchildren.

After her offspring and grandchildren had left, I managed to fall in the downstairs ‘half bathroom’ which is a room with a washbasin and toilet. The problem on this occasion was a loose mat that proved too much for me and my limited mobility to handle.

I was in a confined space and managed to get to my knees but not any further. I needed help and had to wait for Gen’s son to return for him to render assistance. My trousers and underpants were both around my thighs and, being on my knees with my arms on the toilet, everyone got a great view of my butt. Much mirth and laughter from everyone, especially after Gen’s husband Billy said he’d fallen in love with it. Enough said!

Actually, earlier on that same trip, Lisa and I were in Honolulu and used a vehicle converted to carry a wheelchair. I was loaded on in my chair, secured and off we went. What I hadn’t realized was that he driver ad secured the rear of the chair but not the front.  The first I knew about that was when the driver pulled away from some traffic lights like Sebastian Vettel stating a motor racing grand prix.

No longer sitting upright

The start threw me and my chair backwards. This was unnoticed by either the driver or my beloved wife, sitting in the front.  Grabbed their attention by saying “You might like to know that I am no longer sitting upright.” Lisa looked back and saw my feet in midair. She asked if I was hurt and when assured that I was ok, she just burst out laughing, me too.

Not the driver, though. He was so apologetic, and stopped to pick me up and this time secured the chair at the front as well. The poor man was so sorry and worried that he’d lo-se his job but we were too busy laughing. We did not complain.

The lesson I have learned is that you can’t take yourself too seriously.

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

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

Mobility aids: Choose what’s best for you

Mobility – well, truthfully, difficulty in moving around, is something that many of us with multiple sclerosis and other disabilities must overcome.

And, for our benefit, there are numerous mobility aids on the market for us to choose. These vary from the basic walking stick, or cane, right up to the top of the range, road ready, electric power scooter.

But I want to talk about some options between those two extremes. Yes, I will restrict my comments to walkers, rollators, manual wheelchairs, electric wheelchairs, and electric scooters. You see, except for walkers, I have experience using all of them.

Standard walkers are stable, and have sturdy metal frames providing solid support. Upper body strength is required as the user lifts it off the ground every couple of steps.

Wheeled walkers have two wheels and two standard legs. This is easier to move as  the user only tilts it forward to move.

Three-wheeled rollators are ideal for using where space is limited but they don’t have facilities like a seat.

Four wheeled rollators, with two ‘steering’ wheels at the front are easy to move and have seats to use if a rest is needed. They also have baskets or other carrying capabilities. Bakes are important, especially when going up or down slopes. They can also be locked on to hold the rollators still so the user can sit safely

Manual wheelchairs come in two basic types, one where the user has to depend on caregivers to push them about. The other is where users can move themselves using the large wheels that can be self-propelled.

Electric wheelchairs add to users’ independence but are usually heavy and  need wheelchair adapted vehicles to move them about. But now there are folding electric wheelchairs that can easily fit in ordinary carsElectric scooters are available in different sizes. They also improve independence and the smallest ones can be broken down into a number of pieces to fit into cars.

I tried a self-propelled manual wheelchair from Drive Medical but found it was little use to me as I only have one good arm, so still had to rely on Lisa to push my chair. Not that she minds, but it does nothing for my independence.

Three different scooters have been tested. One was too lightweight in terms of power. One was powerful enough but just too large, and the third was just too much to break down to pack away and then reassemble to use again.

A power wheelchair came next. And that was great but it was so heavy to unload from and reload into our seven seat vehicle.

Rollators and wheelchairs

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Next I bought a great foldable electric wheelchair from Better Products for Disabled People – and it is wonderful. It’s so much lighter than an ordinary chair but it is still too much to unload and reload a number of times in quick succession, or if it is only for a short period of time.

rollatorsSo, this week I took delivery of a brand new four-wheeled rollator from Performance Health (formerly Patterson Medical). My verdict? It’s fantastic and yesterday it enabled me to walk to my maximum limit of about 20 yards before I sat on the built-in seat for a few minutes.  Then I got up to walk another 20 yards.

It’s easy to get out of and back into our car. Of course, for longer distances, I will continue to use my trusty wheelchair.

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

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

Like These Athletes, We All Should be Putting Our Best Feet Forward

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It’s often said of the 2.5 million of people in the world who have multiple sclerosis that no two have the same symptoms. Indeed, that is why it is known as the Snowflake disease.

And the wide variety of symptoms can be well-illustrated by looking at examples of people at both ends of the mobility scale. At one end are those who cannot walk, or have great difficulty walking. At the other extreme, are those who manage to overcome their own difficulties and keep running — literally.

determinedLet’s take a brief look at some of those determined to be athletes, despite having MS.

In August 2015, on my personal website, I wrote a story about Kayla Montgomerya young American long-distance runner who competes despite having MS.

Seventeen months ago, I wrote: “Title after title, record after record have fallen to this young lady from North Carolina.

She says that during a race her legs go numb, starting with her feet and working upwards so she feels no pain but, of course, she gets hot from the exercise involved and that is something that all of us with MS know is going to exacerbate symptoms if only for a short space of time.

“At the end of each race, as she stops running, Kayla’s legs give way and she collapses into her coach’s arms. He carries her off the track and her temperature is brought back to normal using ice and water.”

In the Fall, the Paralympic games were held in Rio and Kadeena Cox, a determined British participant with MS, excelled. She won gold medals and world records as both a track athlete and a cyclist. I wrote about her achievements here.

Now, another person with MS is undertaking a massive and incredible challenge. Cheryl Hile is running seven marathons on seven continents in one year. You can read the details in an article that columnist Ed Tobias brought you in Cheryl’s story four months ago.

What all these athletes have in common is being determined to enjoy life and never give up. We all should have the same twin aims. No matter how we are affected by our multiple sclerosis symptoms, we all need to enjoy our lives and never, ever give up. Whether it’s running a marathon or taking just one step — and that is a figurative step — it is a step forward, an improvement, an improvement in your quality of life.

This article, written by me, was first published by Multiple Sclerosis News Today.

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ian-skype_edited50shadesofsun.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.

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.

What having multiple sclerosis means

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Taking it easy the other evening while the television droned n the background, after all, how many times can you watch reruns of even the best programmes, got me thinking about what having MS means to me.

It’s strange what the mind turns to when in a semi-comatose state!

It is now 14½ years since what had been a series of mysterious symptoms was finally diagnosed as multiple sclerosis. Symptoms that were investigated some 15 years earlier, including a lumbar puncture, but revealed nothing.

But in 2002, thanks to rapid action by my GP and some speedy responses at my then local hospital in the UK, the neurologist gave me his diagnosis in April. From referral from my GP to positive diagnosis, including all tests, took just three months.

The initial feeling was relief that the symptoms belong to a disease which has a name; my wife at the time was just pleased that it was not a brain tumour. I don’t remember the exact date. It was in April 2002, that’s as close as it’s possible to recall.

At the time, I knew nothing about the disease except it had a strange name and I needed to learn to spell it. Then I needed to learn more about it and for supplying a great deal of information, a tribute must be paid to the MS Society in the UK, where I then lived.

MS means early retirement

With mobility affected, going out to work proved possible for the next five years but then it just became too much and early retirement beckoned.

In the next few years, life was turned upside down but not because of MS. Events led to divorce and remarriage just eight weeks later.

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In my wheelchair on a better day.

Last year, by then using a wheelchair for all but the shortest of distances, I decided to start this blog and, after a slow start, it really took off.

At the same time, Lisa and I were planning our move to Spain, to enjoy sunny weather so unlike the grey cloudy skies so usual in the UK.

Now in Spain, my mobility is no better but recently it seems no worse either.  Grip through my left hand is still poor but fractionally better than it was.

This blog led to an unexpected development in May this year when I was contact by MS News Today and asked to write for that website. Now, less than six months later I am busy developing and managing a team of patient specialists across some 50 disease/disorder sites.

And the great thing is that I can do everything from the comfort of my own armchair. What’s more, everything I do for this blog or MS News Today is great therapy

People talk about MS being one of the invisible illnesses, the sort that means people can have without others seeing it. In my case, I’m well beyond that stage if trying to walk, but sitting down, you’d be hard-pressed to tell.

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ian profile

50shadesofsun.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.

Sharing life of caring wife of husband with MS

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Today, I have handed the writing over to my wife Lisa to talk about caring for a husband with multiple sclerosis.

Lisa writes:

Yesterday was a special day as Ian and I celebrated our wedding anniversary and enjoyed a lovely meal out in a great local restaurant here in Spain.

With Ian reaching his 64th birthday next week, and me being a few years younger, it may be surprising that yesterday was only our fifth anniversary. We have, obviously, both been married before.

carerI knew that my beloved had MS well before we tied the knot and knew what that could mean for both of us because my grandfather had it too.

As I am Ian’s wife, being his personal carer also falls to me. But that is not onerous to me, after all we are deeply in love and have a great sharing life; what I do as a carer is not a duty but a labour of love.

So, what is the care I give on a daily basis? There are actually too many to list in detail but I’ll just touch on the major ones.

Personal care

  1. Fastening/unfastening buttons
  2. Helping to shower
  3. Personal grooming

Living

  1. Preparation of all food and drinkH
  2. Cutting up anything large into bite-size pieces as Ian cannot hold both a knife and fork
  3. All household cleaning
  4. All laundry, including washing extra clothing because of bladder problems

Mobility

  1. Getting wheelchair out of and back into our car
  2. Pushing Ian about in his manual wheelchair prior to him getting his new electric one
  3. Helping him when walking using his cane

Then there are the times when Ian takes a tumble, whether by tripping or just his knee giving way. Generally, he manages to fall without hurting himself and, through determination and tenacity, somehow manages to get back to his feet unaided.  But there are certain times that he needs my help – and I have to be on hand to provide it.

Oh, yes, one last thing, the two of us have an agreement that when anything concerns his health, I have the final say.

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ian profile

50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-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.

‘Devastating’ benefit cuts could hit 10% of people with MS – and other disabilities too

One in ten people with multiple sclerosis in the UK could face cuts in government disability benefit payments, according to new figures published by the country’s MS Society.

The figures reveal the severe extent of benefits cuts for people living with MS. And, I would sms society logo new_editeday that it is highly likely that people living with other disabilities could be hit to the same degree.

The society, the UK’s largest MS charity, estimates that more than a thousand people with MS have already had their benefits downgraded since the phased introduction of the Personal Independence Payment (PIP) began to replaced Disability Living Allowance (DLA).

The society said: “Of those eligible for DLA, 93% of people with MS received the highest rate of mobility support. But of the 4,349 who have so far been moved over to PIP, only 70% have received the same rate.

“With more than 80% of people on DLA still to be moved onto PIP, we’re concerned that up to 10,000 people with MS could eventually lose access to the highest rate of mobility support.”

michelle mitchell ms societyMS Society chief executive Michelle Mitchell (pictured, left) said: “Changes to disability benefits assessments have already had a devastating impact on the lives of too many people living with MS.

“It’s absurd that those who were once deemed in need of this crucial support now face having it reduced or taken away. We’re deeply concerned by the staggering figures of how many could lose out.”

Tightening of the eligibility criteria under PIP means that more people with MS stand to lose this support. Under PIP, if someone can walk more than 20 metres, even with walking aids, they will no longer qualify for the highest rate of support.

Previously, under DLA, 50 metres was considered to be the rule of thumb for entitlement to the higher rate.

“Changes to the eligibility criteria for mobility support under PIP were introduced with no evidence to show why it was reduced. These changes must be reversed to reflect the barriers people with MS face.

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

She’s absolutely right, of course, and it is good to see the MS Society making a stand and calling for change. Not that the current government will take any notice.

 

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