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@meistrworld
Our trip to hell and back! Really? Back?
Hi everyone, sorry it has been so long since I last wrote but what started as a dream vacation two months ago, turned into a nightmare. A nightmare that has not yet finished.
It will take me more than one post to let you know what happened. For now, I’ll just give you a brief summary. More details will be given in further posts in the next few weeks.
It all started about a week before my wife…
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Pathetic government causes laughter and pity, it’s time to go
Pathetic government causes laughter and pity, it’s time to go
via Pathetic government causes laughter and pity, it’s time to go
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Late night police visit to pick me up
Late night police visit to pick me up
via Late night police visit to pick me up
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50shadesofsun.com is back
via 50shadesofsun.com is back
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Government gagging clauses attempt to silence critics
Government gagging clauses attempt to silence critics
BBC character Victor Meldrew, played by actor Richard Wilson.
“I don’t believe it” was the catchphrase of Victor Meldrew in the BBCtv sit-com One foot in the grave. It signaled his frustration with elements of life today. However, although feeling equally exasperated as actor Richard Wilson’s character, I really DO believe it.
It is another example of overreach, so typical of Conservative…
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Several floors up, fire alarm sounds – but you have moblity problems
Several floors up, fire alarm sounds – but you have moblity problems
Picture the scene. You are several floors above ground and the fire alarm sounds. You have not been informed of either a drill or a test and, so, the instructions are: evacuation.
Just one problem, you have mobility issues. You either use a wheelchair or can on walk down the stairs with great difficulty, in pain, and very slowly.
Laura Kolaczkowski.
I was reminded of this situation by an article…
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Give people with PPMS the treatment they need, MS Society campaign #SpeakupforMS
Give people with PPMS the treatment they need, MS Society campaign #SpeakupforMS
Blocking of a drug as a treatment for primary progressive multiple sclerosis (PPMS), making it unavailable for use by the UK’s National Health Service (NHS), is being challenged by the country’s MS Society.
And it has coupled its opposition with a call to arms – inviting everyone to #SpeakupforMS.
Holly (Pic: MS Society).
Holly, from the society’s campaigns community, lives with PPMS. She says:…
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Some thoughts on making your home wheelchair-friendly
Wheelchairs remain a fear in the minds of many of us who have grown up hearing the phrase “confined to a wheelchair”. While that is not part of our current language about disabilities, a fear still remains about needing to use one.
In truth, however, a wheelchair is a tool that can make our lives easier.
Whether you can propel yourself around in a manual or a motorised chair, one of the most…
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Paul pays tribute to dedication of staff as he prepares to leave Moscow HSCT centre
Paul pays tribute to dedication of staff as he prepares to leave Moscow HSCT centre
Although I have taken a break from writing during August, I just had to catch up with Paul Morrison who, earlier this month, travelled to Moscow to undergo HSCT for multiple sclerosis. The exact type of the disease is a matter of opinion, his neurologist says Paul has SPMS, but tests in Moscow indicate a diagnosis of RRMS. I know who I’d believe.
He is now approaching the end of his treatment…
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Paul's Moscow HSCT for MS journey begins
Paul’s Moscow HSCT for MS journey begins
I had planned to take a break from writing this month, August being a slow news month that is well known among journalists as the silly season. That’s when minor stories are given major coverage, because of a shortage of stories of real substance.
Paul Morrison and his wife Claire.
However, I could not let Monday August 6 go unmarked.
Why? Because, after months of fundraising, it is the day when…
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Heatwave and MS? Is 34C (93F) too much to handle?
Heatwave and MS? Is 34C (93F) too much to handle?
It seems that the media generally has become somewhat fixated on the heatwave being experienced in various countries worldwide.
As a native Brit, I am well used to everyday conversations including the topic of the weather. It’s a staple of chat, an icebreaker.
And, in the UK I left behind, people will be complaining about the heat. “It’s too much,” will be an oft-heard comment. I am sure this…
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MS guide to ins and outs of bathrooms
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:
Many 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…
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Now Ocrevus blocked from health service in Scotland
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…
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Ocrevus blocked again, this time for PPMS, as not cost-effective
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.
Why 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”…
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Disability benefits: Questions remain over timing and complexity
Disability benefits: Questions remain over timing and complexity
Why, oh why, oh why? This was the title of a hit song (well in the UK anyway) performed by Gilbert O’Sullivan in 1973, but now represents three questions to which we need answers. And by that, I am talking about meaningful answers from a government department responsible for benefits for the sick and disabled.
The UK government´s Department for Work and Pensions (DWP) has much to explain.
Photo:…
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Banned, but why? Facebook gives no reason
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…
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Government minister’s welfare benefits statements prove economical with the truth
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,…
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