Monthly Archives: October 2013

Oct 20 2013
6 Comments
Symptoms and Treatment

What Was I Saying Again?

goldfish‘It’s there, that watchermacallit on the thingiemabob. Next to the dooby-doo.’

This was me yesterday, explaining to The Teenager where an important form he needed for school was.

MS has been having lots of fun with my brain and it’s only getting worse (it’s got absolutely nothing to do with turning 40 of course). I just can’t seem to remember the most simple words.

I’ll pause mid-sentence, sifting through years of education in my mind before finally landing on the word I’m looking for, so happy to have found it that I’ll inappropriately yell out ‘banana! I meant, banana!’. Or some other word that completely escaped me five minutes earlier.

I also make up new words. Like last week when my mum asked me what I had planned that morning. ‘Oh, it’s flab day’, I replied. She sighed and said, ‘oh sweetheart, I know you’re unhappy with your weight, but think positively. Have you tried chick peas?’ I had to tell her that I was indeed unhappy with my weight, but I was actually going for my flu jab.

In my glory days, I prided myself on being able to converse in three languages (four if you count Glasgwegian). Now, I can barely get by with one. Plus, I also have the ignominy of repeating myself, thanks to bizarre short term memory loss. I am in danger of turning into the dinner party guest from hell, the one that’s invited along for a bit of comic relief.

I have visions of Christmas Day twenty years from now, with The Teenager taking his children to one side and gently reminding them to be patient with Granny Stumbling and not to laugh when she can’t remember the punchlines to jokes, or when she asks them for the umpteenth time how they’re doing in school. Just re-fill her sherry glass and hand her a copy of People’s Friend. And under no circumstances are you to bring out Pictionary or Scrabble.

For now, although socially dire, I manage as best I can. In shops, when I can’t remember what I went in for, I’ll look at my watch and dash off, pretending I’m late for some appointment. In restaurants, I’ll point to the menu, as if my mind is on higher things than ordering lunch. And when I’m out with friends, I’ll….hang on, what was I saying again?

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Oct 18 2013
14 Comments
Blogging

In The Company Of Giants

ChrisThe MS Society Awards 2013 at The Dorchester yesterday were, in the words of The Teenager, just awesome.

To be in the same room as so many incredible people with so many inspiring stories and achievements is impossible to convey and to be a finalist in the same category as St Bartholomew’s Hospital and Shift.ms was humbling. I had no expectation of winning and was over the moon to receive a ‘highly commended’ certificate and bottle of bubbly.

There’s far too many highlights to mention, so here’s a flavour of how the day unfolded: we arrived early enough for The Teenager to be photographed posing next to a £1 million Bugati parked outside the hotel which he quickly tweeted to his friends.

A champagne reception was then the perfect way to meet new people and put faces to names before being ushered into the ballroom for lunch. I was thrilled to be sitting next to Joseph Carter, the Director of MS Society Cymru and on the same table as David Baker from St Bartholomew’s Hospital with whom I had a lively and illuminating discussion about Alemtuzumab.

Lunch was superlative, the surroundings beautiful, but most importantly, the awards were emotional, moving and thoroughly well-deserved. The final announcement, for the MS Lifetime Achievement Award went to our very own Stuart Nixon (hardly a dry eye in the room). The Teenager was busy having his photograph taken with as many celebrities as he could find – a big thank you to Stephanie Millward for signing autographs for him and letting him hold an Olympic torch. In all the excitement, I forgot to take any photographs myself (d’oh!), but the day passed in a whirlwind.

It was brilliant to have people come up to me, have a quick glance at my shoes and ask if I was Stumbling In Flats. To be told how much people loved my blog was an award in itself and I’m still floating on a high (possibly also due to the champagne…).

What can I say? I truly was in the company of giants. If the future of MS is in their hands – through research, through fundraising, through volunteering – then we are in very safe hands indeed.

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Oct 16 2013
10 Comments
Blogging

Blog Action Day – Human Rights

Blog Action Day 2013Every year since 2007, thousands of bloggers have come together for one day to talk about one important issue. Previously, bloggers have focused on the issues of poverty, water and climate change. This year, we discuss Human Rights:

Recently a woman from Glasgow with primary progressive multiple sclerosis won a ruling (thought to be the first of its kind) that changes to housing benefit breached her human rights, paving the way for similar appeals.

Since April this year, social tenants who are deemed to have too many rooms have had their housing benefit cut, the so-called ‘spare room subsidy’ or ‘bedroom tax’. The woman in this case lives with her husband in a two bedroom house, and lost 14% of their housing benefit, resulting in arrears with their housing association.

However, tribunal judge Lyndy Boyd ruled that the woman’s case must be viewed within the context of the Human Rights Act 1998 and the Housing Benefit Regulations 2006, and ‘it would be incompatible with the appellant’s rights under Article 14 of the European Convention on Human Rights read with Article 1.’

Due to the woman’s severe disability, she is not able to share a bedroom with her husband (who also provides care during the night), and as such, their house is not under-occupied. The tribunal ruled that they required a bedroom each and a decision to cut their housing benefit therefore breached her human rights.

The woman’s bedroom measures 3.2m by 3.1m. Her ceiling tracking hoist is 3m by 3m, her hospital bed is 2.2m by 1m. She also needs her electric wheelchair next to her bed, a wheelchair ramp, remote power door entry, specially widened doors and a wet room. She is assisted by specialist carers three times a day who also need to be able to move around the room freely.

The Department of Work and Pensions have commented only to say ‘we will need to look at this particular decision in detail’ and that ‘tribunal decisions at this level do not set a precedent.’ Therefore anyone else in a similar situation could also have to endure the stress and humiliation of this process. We can only imagine what this couple went through whilst still having to live and cope with severe disability on a day-to-day basis.

I for one though am full of admiration that they found the strength to take the case to tribunal. The DWP may claim this is not a precedent, but this couple has surely given a much-needed voice to thousands.

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Oct 15 2013
18 Comments
Media

“Pity Is Just Another Form of Abuse”

when life hands you lemons‘Pity is just another form of abuse’ – a powerful and provocative statement. This is Michael J Fox, my childhood heartthrob, talking recently to The Guardian newspaper about some people’s reactions to his diagnosis of Parkinson’s at the age of 30.

He makes an interesting point though. I don’t want people to pity me either when they discover I have MS. Pity is disempowering and serves only to make the person feeling pity on my behalf more powerful and somehow superior to poor, suffering me. Just pat me on the head and ask my friend if I take sugar.

In fact, in common with many people who have experienced a life shattering event such as cancer, Michael J Fox believes that Parkinson’s has been ‘a gift, albeit one that keeps on taking’. MS seems to be unusual in that respect; I haven’t met many people with the condition who are willing to echo that sentiment, at least openly. Why not?

He also raises a subject I hadn’t previously given much thought to – ‘a lot of times, people who are in a health situation become the observed patient and other people project their own feelings on to them: ‘No, you’re too tired to go there,’ ‘No, you don’t want that.’  This very much adheres to an old-fashioned model of disability, where it was assumed that everyone else knew better than the person living with the condition themselves – perhaps a form of control disguised as benevolence.

He makes a further reflection which resonated deeply with me, ‘I talk about it (Parkinson’s) because it’s there, but it’s not my totality.’ I have had internal (and blog-based) debates about this – is MS taking up too much of my life? After much soul-searching, the answer I came to was a definite ‘No’. Sure, it’s there, but then so are many other facets of my life. My blog and campaigning are a slice of my life (and why deny MS? ) but I am a sum of all it’s parts.

I fell in love with Michael J Fox all over again when he says the best way to overturn pity is to find the humour in the otherwise doom-and-gloom situation. That’s exactly why my blog strapline is ‘….a funny old life with multiple sclerosis…’

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Oct 13 2013
24 Comments
Work and Studying

MS, DLA And Work….

MS, DLA and WorkLet’s get one thing straight. DLA is not an out-of-work benefit. In fact, it helps many people with MS stay in work.

The Government and media’s growing focus on ‘fairness for taxpayers’ leads many to believe that disabled people are a separate group who contribute nothing to society.

A Freedom of Information request, published in August this year, stated that the number of working age people receiving DLA is 1,839,000, of which the number of those in employment is 386,000 (21%). There are 127,000 people living with MS in the UK with just 50% of them claiming some form of DLA (63,680).

Working with a variable and unpredictable illness is difficult enough in a recession-hit economy and with hardening, right-wing attitudes towards anyone disabled, it’s no wonder the figures for those with MS in employment are so shocking:

  • Fact – more than 75% of those with MS say their condition has impacted their employment and career opportunities.
  • Fact – up to 80% of people with MS stop working within 15 years of the onset of the condition.
  • Fact – up to 44% of people with MS retire early due to their condition (the European average is 35%).
  • Fact – people with MS lose an average of 18 working years.

As DLA is phased out and replaced with PIP, people with MS will be forced to submit to humiliating re-assessments to check that we are indeed still living with a degenerative, incurable illness. Note the word ‘incurable’. Perhaps the Department of Work and Pensions should be renamed the Department of Miracles?

Working with MS means coping with reduced dexterity, cognitive impairment, limitations in mobility and overwhelming fatigue, among many other symptoms. Coupled with some employers lack of knowledge and understanding of MS and it’s easy to see how staying in the workplace can seem like an uphill struggle.

I’m fortunate. After a hideous year of relentless bullying by my previous employer and colleagues which ultimately led to me being sacked for having MS, I now work for someone who has taken time to learn about the condition yet is also aware of the strengths I can bring to my job.

DLA can make a real difference to people – just ask David Cameron, our venerable Prime Minister. The multi-millionaire (and son of millionaires and son-in-law of millionaires) once claimed it too…

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