Apr 25 2016
4 Comments
Symptoms and Treatment

Take Control, Know Your Choices

1MSg logoThis week is MS Awareness Week and a campaign is aiming to reach the one in five people with multiple sclerosis who are not in contact with specialist services

A multiple sclerosis (MS) awareness campaign, called 1MSg, has launched recently urging people with the condition to ‘Take Control, Know Your Choices’.

The campaign, funded by Biogen and developed alongside clinical experts, comes in response to research which highlights the need for patients to regularly engage with MS-specialist services.

Previous research conducted by the MS Trust, found that nearly a fifth of people with MS had seen neither an MS-specialist nurse (MSSN) or a neurologist in the past year, and so will not have received the comprehensive annual review recommended by the National Institute for Health and Care Excellence (NICE). In addition to this are those patients not currently known to MS-specialists due to not being in contact, those ‘lost to follow-up’.

To help address this issue, the 1MSg campaign highlight the benefits of regular and quality engagement with MS-specialists in order to ensure that people are making informed decisions about their disease management based on the latest information, under the guidance of experts.

The progression of MS can be unpredictable and can vary from individual-to-individual, and therefore monitoring is important.

Dr Martin Duddy, a Consultant Neurologist specialising in MS, said: “I’m supporting the 1MSg campaign because I believe that there are people in the UK living with MS who are not seeing an MS doctor or MS nurse regularly, and who would benefit if they did. The way we manage the condition has changed a great deal. This includes the support services we offer, how we control or treat symptoms, how much we understand about the disease and its progression through technology such as MRI, and what we’re able to offer in terms of treatments to help alter the course of the disease.

The advent of DMTs, I think, has induced a lot of hope in people with MS. In the medium-term, within the UK, we’ve been collecting evidence on whether we see a disability reduction and that is coming through at six and eight years now that people who are on the drugs are not as disabled as they would have been if they hadn’t taken them.

We’re looking long-term, and worldwide, to collect better information about the 10, 20, 30 year outlook, but the first principles in science and some of the early data would suggest that treating the disease actively at an early stage does prevent some of the later disability, so I want to encourage all people living with MS to regularly see a member of their local MS team.”

To learn more, visit www.1msg.co.uk where you can access a wealth of information and hear advice from healthcare professionals, including Dr Christian Jessen, about the importance of engaging with MS-specialist services. You can also watch a video explaining more here.

Tagged , , , , ,
Apr 24 2016
8 Comments
Emotions

Gone

goneWay back in the mists of time, when my dad died from MS complications, aged 35, I knew I would always have my mum.

Now she is seriously ill in hospital, and has been for four months.

There’s always that hope, isn’t there, that our mums will shrug any illness off, put the kettle on and give us our full attention.

They’ll bustle around the kitchen, nurturing plant cuttings, swapping local gossip and making us feel like we are the most important person in the world.

Not any more.

For me, it really hit home yesterday. I had been at a wonderful MS Society Council meeting (as a fully-fledged member!), and as soon as the train pulled into the station, I thought, ‘ah, I’ll give mum a call, let her know I’m home safe’. I felt safe just thinking it.

Except I can’t. She’s too ill to really understand.

She knows I’ve been away and now she knows I got back safely but the nuances remain left unsaid. I am floundering. My safety net, that generation above me, has disappeared. It’s me at the top of the tree.

You’d think, that after four months, I would be used to it. Not a bit. It still stuns me every single day. There have been brief glimmers of hope but they have been cruelly dashed.

Next week, I’m off to London, as a finalist for an MS Society award. I’m wholly unprepared – a recycled outfit, untrimmed hair, red face and snagged nails. I’m a mess. It’s been four months of non-stop angst.

I’m absurdly worried that I won’t be wearing a dress – but after my attempts, which have come to nothing, I’m resigned to my black trousers and top. It will be a miracle just to attend the ceremony.

However, in the midst of all the gloom, all the decisions, drama, horror, it meant the world to get away for 24 hours and be amongst an inspiring group of people who just understand.

Perhaps I do feel safe: just in some different, new form.

Tagged , , ,
Apr 18 2016
5 Comments
Blogging

Fumble? Nimble!

NimbleYou know me, since MS, my hands just don’t do what they should.

I drop stuff. I fumble with packaging. I even need a pair of scissors to open a packet of Wispa Bites.

So when a very nice man called Simon sent me a Nimble in the post, along with a bag of sweets, I was more than a little curious.

The enclosed leaflet promised that the Nimble would let me say goodbye to wrap rage, thanks to it’s clever ultra-hard zirconia ceramic blade. Excellent. I gave it a whirl.

Well. I’m impressed. I’ve never blogged about products before, but this is the exception. I love the back story even more – Simon came up with the idea for Nimble when he entered a design competition run by Bath University, choosing to tackle the problem people like me have with opening packaging, especially in the kitchen.

I tried it on that packaging you get round batteries, thick cardboard envelopes and the horrible shrink-wrapped plastic on The Teenager’s 7-pack of sweetcorn tins. It was a relief not to stab myself with the scissors I normally use. It worked, even though the blade is tiny.

Most importantly, it passed The Teenager’s ‘cool test’. He came home from school one day and found me using it on a multipack of Diet Coke:

‘Wha’sat on your finger?’

‘Ah. This is The Nimble’ – behold.’

(effortless swipe, cans released)

‘Mint. Give us a shot.’

He then proceeded to slice through pretty much everything to hand – my shopping list written on the back of a Special-K box, a sachet of cat food and the cover of a cookery book (thanks for that).

Anyway, don’t take just take our word for it, if you want to try it for yourself, here’s the link to the online store.

Happy Nimbling!

Tagged , , , ,
Apr 17 2016
11 Comments
Work and Studying

I (Heart) My Boss

grand prixRemember everything mean I’ve ever said about my boss?

I take it all back.

Last year I tagged along to the Austrian Grand Prix with him – which had more to do with me having lived in Austria for two years, speaking the lingo (lol) and sharing the drive (yes, we drove, from Cardiff to Graz).

I’m not a petrol-head by any stretch of the imagination and spent most of the race in Austria tugging on the boss’s arm, asking, ‘where’s the loos?’, ‘why’s that car crashed?’, ‘when does it get to the exciting bit?’ and ‘can we go home now?’.

This year is different. He was toying with various Grand Prix locations, weighing up the prices. He worked out it was only a couple of hundred quid more to have me go along with him, than for him to go as a single traveller. Knowing that I was adept at travelling and scanning a guide book in the blink of an eye, he has asked me to accompany him to his Grand Prix of choice this year.

Singapore.

Sing-a-blooming-pore. Ah. No way. Absolutely no way. 31 degrees in September? I really don’t think so.

I said to him, ‘that’s soooo sweet of you, you know, to organise this ‘works do’. I mean, most boss’s are happy with a Christmas party at the local Carvery. Erm, have you thought about Belgium? Very clement, I hear.’

‘D’uh, we drove through Belgium on the way back from Austria last year. I’m striking out, being more adventurous. Just like you advised me to do?’.

‘Er, boss, when I said ‘adventurous’, I meant, perhaps going to Sainsbury’s for your ready-meals rather than Tesco’s?’

‘Yeah, well, I like Singapore Fried noodles, so it was pretty much a safe bet’.

‘Ah’.

‘Listen. You in? Or you out? I’m paying?’

‘Well, when you put it that way, erm, yup, it sounds, erm, pretty amazing’ (googles Dengue Fever quickly).

So the upshot is, I’m going to Singapore in September. I’ve rationalised it in my mind by thinking, ‘it’s experience, I could maybe write the next great novel out here, I might have the experience of my life’. If the heat doesn’t get me first.

I had a chat with the boss about what I should wear – always a touchy subject, being a fat-ish person.

‘Doesn’t matter – they’re all here to see the race, wear what you like’.

‘Like, I know, but a hint about the kind of hotel we would be staying in would be helpful?’

I should have known.

‘Raffles. Singapore’.

All my worst nightmare have come true. That epic, five-star hotel in Singapore? The hotel that invented Singapore Slings? The hotel that gives you a butler, just because they can? Gah. Really? I am neither rich nor thin. Will they accept me as a fat interloper?

Deep breaths.

Tagged , , , , ,
Apr 11 2016
16 Comments
Work and Studying

End Of An Era

booksAs I put the cap back on my special black inkie, zipped up my pencil case and gathered my scribblings together, I pondered.

I’m very good at pondering, but this was a very special occasion; I have reached the end of my Master’s course. Me!

The two years have flown by and my dissertation looms.

I started out wondering (pondering?) if I could write anything apart from a blog. I’m still not sure, but I’m going to give it my best shot.

I would love to say that I enjoyed every minute – but where would be the fun in that? I took this course to push me to my absolute limit. And it worked.

My MS brain was failing me big time and I wanted to do something that would/could wake  it up. I like books. I like reading. MS started to chip away at that, so what better way to wreak revenge on this pesky illness than to do something completely contrary? MS reared it’s ugly head again last year (gah) and I had a third course of Campath in September to help combat it.

Then my relative became ill and real life took a dramatic turn, no need for improvisation. But, honestly, what kept me going was writing. I know it sounds strange, but telling it as it is was was a lifeline – in a strange way, it allowed me to distance myself from the emotional turmoil. I would fashion sentences in my head, such as, ‘she walked with trepidation towards the ward, room, blissfully unaware of what she would could face’. I was self-editing.

But back to the Master’s. The whole course has been an exhilarating journey through literature, a non-stop assault on the senses. I’ve been reading my whole life and now, suddenly, I find that those decades, those towers of books I have read, are coming in to good use.

I’m not a starving artist in a garret, much as I’d like to be. Instead, I’m a chocolate-addicted scribbler in a very small cottage. I don’t wear fingerless gloves and I’m not freezing, MS heat-intolerance has put paid to that. The Teenager doesn’t like baked beans much, sadly. Nor baked potatoes from the microwave.

Yet, galvanised by the last two years of lectures, tears, upsets and criticism (always constructive), I am tentatively calling myself ‘A Writer’.

Don’t laugh, lol.

Tagged , , ,
← Older posts
Newer posts →