Sensitivity to heat not affected by summer sunshine

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As summer continues with temperatures in the 30°s C (high 80°s), the hottest days now seem to be behind us here in the south of Spain. The temperatures peaked at over 100°, so the high 80°s is quite pleasant.

What’s more, the good news is that the hot weather has not caused me any heat sensitivity problems at all. But then, that’s exactly what I expected. And that is because my heat sensitivity is triggered by changes in temperature not consistent heat.

Some people were concerned about heat exhaustion when the learned that Lisa ad I announced we were moving to Spain, two years ago. But after a series of sudden temperature changes experienced in the UK, this is a walk in the park.

Heat in your marriage

Talking of my beloved Lisa, she never ceases to amaze me with her selfless dedication to my wellbeing.

I have heard from so many people with MS who have split up ad divorced when their partners decide that a life as a caregiver isn’t for them. It is so sad.

Lisa has known that I have MS right from the start of our relationship, I never tried to hide it. She agreed to marry me knowing what was in store for us both. Furthermore, her granddad had MS too, so she knew more than most husbands and wives when their spouses are diagnosed as having MS.

Perhaps that is not incredible, perhaps it should be expected but there are many who have found that not to be the case. The “till death do us part” of the marriage vows appears to have been lost on their partners.

Do you have the loving support of your spouse or have you split up? And just how does heat sensitivity affect you, or doesn’t it? Please let me know.

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

Government MS group says more support needed at work

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People with MS who want to work are just not getting the support they need in the workplace.  That´s the verdict of the UK’s All Party Parliamentary Group for MS.

The group issued its report after conducting a year-long review into whether people with MS have the support they need to stay in, or get back into, work. It has also made recommendations about improving support that people with MS need.

Unsurprisingly, the review found that the fluctuating nature of MS is a significant obstacle to gaining, or staying at, work. Other findings were:

  • Common MS symptoms (including fatigue, mobility issues and cognitive problems) can cause significant challenges at work.
  • Those who are not in or looking for work due to their MS lose almost 20 working years on average.
  • Preventable issues result in many people with MS leaving work earlier than they would choose to. These issues include people with MS facing stigma and discrimination at work and a lack of understanding of MS in the workplace.
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All Party Parliamentary Group for MS chairman Simon Hoare MP.

Group chairman Simon Hoare said: “Small, straightforward changes by employers – such as supporting managers to feel confident in talking with employees about their health and offering reasonable adjustments – can help people with MS to stay in work for longer.

“There are areas for improvement in Government policies and employment support schemes such as the Work and Health Programme and Access to Work. And employees need to feel comfortable about discussing their immediate and ongoing needs with their employers.”

MS Society chief executive Michelle Mitchell said: “With the Government’s consultation on work, health and disability now launched, this timely review sets out concrete steps that could result in more people with MS, who feel able to, remaining in work.

“We know that employment can help people with MS to remain independent and participate in society, so it’s crucial this issue is addressed. And those who can no longer work should be able to rely on welfare support without the fear of having it taken away.”

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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.

Green Paper shows disability support plans

Earlier this week, on Monday October 31 to be exact. the UK government published its Work, Health and Disability Green Paper. Yes, believe it or not the government chose to publish it on Halloween. Hopefully that is not an omen of things to come.

A Green Papers, popularly known as a discussion paper, is designed to stimulate debate on government proposals before it decides on a course of action.

Damien Green: Self-interest.

Damien Green MP.

Publishing the paper, Work and Pensions Secretary Damian Green said he wanted “targeted and personalised support” for people with chronic conditions while they look for work.

The green paper shows that the government plans to introduce a new Personal Support Package for people with health conditions who are out of work. This, supposedly, is to ensure that those concerned receive tailored health and employment support from work coaches and community partners with expertise in disability.

Another government plan is to reform the work capability assessments process for people claiming Employment Support Allowance and Universal credit. This scheme is so flawed that tinkering around the edges just won’t be enough, it needs to go, now.

One positive move is a plan to separate assessments for financial support from employment support. If that happens, which I doubt, it should be possible for people who may be able to work with the right support to access the help they need without affecting the financial support they receive. Yeah right!

Both the MS Society and the MS Trust gave guarded welcomes to the green paper.

MS Society chief executive Michelle Mitchell said: “Since its inception the Work Capability Assessment has failed to recognise the fluctuating nature of conditions like MS and the debilitating impact of their more ‘hidden’ symptoms. We welcome the government’s plans to review this assessment and to improve the support available to people who may be able to work.

“We are keen to help create a system that makes more sense. However, it must be recognised that many people with long-term progressive conditions will simply be too unwell to work and no amount of extra employment support will change that.”

She added: “We’ve been calling on the government to make sure the welfare system makes sense for those who rely on it. As part of our MS: Enough campaign, we’ll be reviewing the government’s proposals and what they mean for people with MS.”

MS Trust policy officgreen paperer Amanda Croft said: “The right work is a big driver of overall health and wellbeing, but we know that unemployment rates are much higher among people with MS than the general population. The MS Trust welcomes this recognition from the government that people with long-term conditions are still a valuable asset to the workforce, and that flexibly tailored support can help people with conditions like MS to achieve their employment goals.

“The unpredictable nature of MS symptoms is a particular challenge for individuals with MS and employers. Work capability assessments have historically been poorly designed for a fluctuating condition like MS. We urge the government to take the opportunity offered by their proposed review of the assessment process to ensure that the fluctuating and hidden symptoms of MS and their impact are properly taken into account.

“It is imperative that better employment support is combined with a fair and compassionate welfare system that offers support and security to those whose condition makes it impossible for them to work.”

 

Support – a question of sport

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Nationality and patriotism are areas that can both stir up strong emotional feelings that are mostly for the good but sometimes not.

Of course, the most extreme forms of both are found in times of war or conflict between nations but, on a lesser scale, it flows across into the realms of sport.

When I moved from London to North Wales in 1992, despite being English by birth and parentage, I became loyal to my adopted country and its rugby union and football (soccer) teams – even when playing against England.

I learned to sing Mae Hen Wlad Fy Nhadau (the country’s anthem) in Welsh as well as to spell and say the name of its longest village: It is Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch (and, yes, I did type all 58 letters without looking it up and without any correction being needed). Additionally, the only two rugby shirts that I have owned have been the red of Wales and the black of the Ospreys team based in South Wales. Although never having a Welsh football shirt, I still followed the progress and fortunes of the team.

So, what does that all mean for my impending move to Spain?

Switching allegiances from one British team to another was no big deal but supporting Spanish teams would entail a much greater transfer. But isn’t that what I will be doing by living there? In a way, yes it is but, conversely, I shall be remaining a UK citizen and I will continue to vote in parliamentary elections in the constituency I which I now live. So, loyalties will be divided.

Spain is not a major rugby-playing nation, so in that sport I shall continue to support Wales. Football is another matter, though. The Spanish seem to treat ‘futbol’ as a way of life, they are fervent. And the national team is good too, having won the World Cup in 2010 and the Euro Championship in both 2008 and 2012. I don’t think Wales will rival that team or play against it very much. It seems likely that I’ll be able to support both.

At club level, Fulham has remained my UK football team since moving to Wales but now I’ll need a Spanish one as well. On purely geographic grounds, that looks set to be Almeria that plays in the La Liga second tier in which it currently lies 16th of the 22 clubs. So it looks like I will have to get used to supporting a team that plays in a red and white striped shirt.

Baseball is another sport that interests me and, as theirs is the only stadium I have visited, Toronto Blue Jays is the team for me. On the other hand, Lisa being American says that my support should be for a USA team not one in Canada. Fair enough, I suppose, but I’d have to see them play first!

As far as my last major team sport is concerned, there is no need to change anything. This is because cricket is not a feature of many nations and so I can rest easy supporting the England team that represents the England and Wales Cricket Board.