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The financial costs of MS

16th September 2014 by Nicola Pates

Do you know how much more having a diagnosis of MS has cost you financially?

I don’t, but at a guess I would say that your car insurance and travel insurance have gone up and that it’s difficult and expensive to get life insurance and a mortgage.  Not to mention the hours spent on the telephone and with the forms, and getting medical reports to submit with the forms if you need them.

Then there are all the other day-to-day costs of MS, which can certainly mount up.  These are things like prescription charges, hospital and GP surgery car parking charges, costs of specialised equipment if you need it.  Specialised equipment need not be exotic: I’m thinking of things like smartphone apps to help keep track of your MS, or fans to help you keep cool.  Would you need these if you didn’t have MS?  And then there are the financial deals you miss out on – for instance, does the need to plan around your MS mean that you can’t take advantage of cheap deals on things like travel, theatre tickets or restaurants, because they are only available at short notice or at strange hours?

We know that all of these things have an impact on your financial situation. Unfortunately, as a small charity, we don’t have the resources to campaign about the financial impact of MS but SCOPE, the disability charity, does.  In July their launched their Extra Costs commission which is running for a year and looking at the extra financial costs that people with a long term condition or disability face.

SCOPE are specifically requesting individual accounts of your experiences of extra costs that are incurred because of your MS, and of how these costs affect you and your financial situation.  Have these costs led to financial hardship?  Does it make it harder to make ends meet?   Please don’t let the fact that SCOPE label this as ‘disability’ put you off – this is an opportunity for people with MS to explain just how financially expensive having MS is, along with being emotionally, physically and mentally hard.

I cannot stress how important it is that all aspects of the costs involved in MS are exposed within this report, and that can only happen if you submit your personal experiences. SCOPE needs to hear about the extra costs you face, but also about their effect on your whole financial situation. There is an online form here which is really simple to use and which allows you to say as much or as little as you like, in your own words so that you can focus on what matters most to you.

Alice, Policy Officer

Getting ready to ride to the Alps

15th September 2014 by laura.percival

Paul Markham and Barry Jordan

Paul Markham and two friends will be cycling from London to Courchevel this month to raise funds for the MS Trust. Paul tells us here why he has chosen to take on this challenge.

I work in the ski industry for a company called Supertravel and spend some of each winter in the Alps. I’ve been talking about riding my bike from London to Courchevel in the French Alps for charity for about four years now, but each year things didn’t quite work out. It’s the company’s 50th birthday this winter so it kind of made sense for us to aim for this year.

I’ve managed to talk two others, Fred Wakefield and Barry Jordan, into the ride and we have two support drivers, Clive and Christine Chappe. We are going to ride the 650 miles in nine days ending in an HC (super category) climb to Courchevel 1850 which they have used in the Tour de France – basically a steep mountain that lasts 15 miles!

We were looking for a charity to support that meant something to us, something that we knew would help. I remember my dad telling me that he had bumped into a school friend of mine and that he was shocked to find out that she had MS. We connected through facebook a while later and I have kept up with her blog over recent years. It was difficult taking in how the condition had affected the girl who used to live on my street, the girl who used to run around my parents’ garden.

I think it’s made us realise that the challenge we will have riding the nine days is small compared to the challenges that people with MS face each day. So at the moment whilst we are dealing with sore legs and a sore bum, that’s our motivation to keep going. We’ve been doing rides of up to 85 miles, including a couple of rides in the Alps. Putting in nine days of that kind of distance is going to be the hard part, but what would be the fun if it was easy?!

Visit Paul’s fundraising page

Photo L to R: Paul Markham and Barry Jordan

Three talking points from day two of the Boston MS conference

12th September 2014 by Stephen

In her third post from MS Boston 2014, Amy Bowen reports on the highlights from day two

Amy Bowen, Director of Service Development, MS TrustAnother day at MS Boston 2014. We heard that there are nearly 9,000 delegates from 90 countries attending the conference, which gives you an idea of the scale of this event. There was a fantastic presentation by a Danish group called Sailing Sclerosis. This is a group of people with MS who are sailing around the world and have just crossed the North Atlantic, arriving here in Boston just in time for the conference. The whole crew came to the conference and received a standing ovation from a packed hall. They showed a film of their Atlantic crossing which was really inspiring.

Thursday’s programme had much more scientific content, with findings from trials being presented in a constant stream in sessions running in parallel throughout the day. There were also some big announcements, but more of that later.

Big learning for me from the day:

  1. Some really great sessions on current thinking about disease modifying therapies. Overwhelmingly, neurologists recognise that decisions need to be personalised. There are clinical factors about the current important measures of disease activity, such as relapses, changes on MRI, sustained signs of disability and changes in brain volume. These help guide clinical assessment but are not enough on their own. The preferences of people with MS must play a big part in treatment decisions. This is partly about weighing up how effective each treatment is compared with the possible side-effects. It is also about how individuals feel about risk. Without a doubt, having information about treatments that can be compared is becoming more and more important.
  2. Lots of discussion about stem cells. Results of some promising studies and more work underway, but this is a new frontier and there are a lot of issues to be addressed. There was a strong message for people with MS to be extremely cautious about stem cell therapies which are offered outside of clinical trials. The risks are significant and serious.
  3. The Progressive MS Research Alliance announced its first research grants. This is a fantastic development for people with progressive MS. Though research takes time to deliver benefits, without it there can’t be progress in improving understanding of what causes and drives neurodegeneration in progressive disease or understanding of what therapies can help maintain function. These initiatives also help to continue to raise the profile of people with secondary progressive MS and primary progressive MS and of the importance of rehabilitation services.

That’s it for today.

Amy

Three things I learned from day one of the Boston MS conference

11th September 2014 by Stephen

In the second of her posts from MS Boston 2014, MS Trust Director of Service Development, Amy Bowen, reports on the hot topics from Day One.

Amy Bowen, Director of Service Development, MS TrustIt’s the end of day one at MS Boston 2014. The event is truly massive and there is an enormous amount to see and take in. Much of the focus of the day was on clinical teaching and on new researchers presenting their projects. I learned a huge amount but these are the three big three things I took away from today.

  1. There’s a lot of talk about early treatment of relapsing remitting MS with disease modifying drugs. Neurologists are thinking about the strength of the evidence for early treatment as opposed to a more gradual ‘watch-and-wait’ approach. They are also discussing the risks and benefits of more ‘aggressive’ treatment. How important is it to try and reduce or eliminate all signs of what the neurologists refer to as “disease activity” – not just the visible signs (such as relapses and increase in disability), but also changes which can only be seen on MRI scans?  What impact does this approach have on short and longer-term outcomes? This is going to become a bigger focus  for neurologists, and people with MS will need the right information to help them have better discussions with their care team about their treatment options and choices.
  2. In all types of MS, cognition is a big issue. Researchers and clinicians are focusing on one of the most important and often invisible problems that people with MS experience. About half of people with MS  may have problems with memory and information processing. This has a massive impact on their daily life, and is a major factor in people staying in work. I heard that even though cognitive problems often lead to the decision to leave employment, the main reason that people with MS disclose their diagnosis to their employer is to do with physical problems such as walking. Cognition is a hidden issue and there is clearly a recognition that clinicians need to focus much more on asking people with MS about cognitive problems and offer support to manage them. There are now quicker and more accurate ways of assessing cognition, and different techniques for addressing cognitive problems. Clinical trials for new disease modifying treatments for all types of MS  are starting to measure their effect on cognition rather than just how they affect walking or physical disability.
  3. Exercise helps! I heard a lot of talk and saw a lot of evidence about the value of exercise for everyone with MS at all stages of the condition. Activity helps physically, psychologically and perhaps even with cognitive problems. Exercise programmes are really important and fit well with a general approach to MS care which gives more control to the individual. This is going to be a big, big issue.

That’s all for today. More from me tomorrow.

Amy

Keep in touch with what’s going on this week at the world’s biggest MS science conference

10th September 2014 by Stephen

All this week the MS Trust’s Director of Service Development, Amy Bowen, will be reporting back from the world’s biggest MS conference in Boston, explaining how the latest research and trials could make a practical difference for people living with MS

Amy Bowen, Director of Service Development, MS TrustToday is the opening of the world’s largest MS scientific conference. Usually, there is an annual conference in Europe (ECTRIMS) and another in America (ACTRIMS), but this year they have combined for a joint event in Boston. The MS Trust is here to participate, learn and hopefully bring the conference to life for people with MS in the UK. Each day of the conference I will blogging about what I have seen and learned, picking out the themes that are emerging and what delegates are talking about.

MS Boston Social media sessionsAs well as following this blog and some tweets throughout the day, you can also take part in the conference online.  The team from the Bart’s MS blog will be covering hot topics and interviewing scientific experts, which you can listen to, watch and even send your questions for the experts to answer. There will also be daily debates on challenging questions in MS  which will be streamed across the conference and the internet, which you can join in by tweeting your questions and voting. The MS Trust will be joining in these sessions and I will be chairing the debate on Thursday, so join us and help make the conference come alive for people with MS.

Looking through the whole  conference programme, the array of sessions is huge, from the basic science, exploring the frontiers of new ideas, all the way to challenges that clinicians face in everyday practice. There’s no way to see it all. I will be picking up what I can about the long-term future for treatments, but am going to focus on two things:

  • How are clinician  (especially neurologists) thinking and talking about managing and treating MS today? How do they approach dilemmas in practice, select treatments and what is the latest thinking about the goals of treatment? This goes for all types of MS, not just those who have relapsing remitting MS.
  • What are the biggest areas of learning and international research that are likely to affect people with MS in the next few years? What is on the near horizon that will change practice and deliver benefit soon?

I hope that my tweets and blogs over the next few days do help to bring this huge event to life. Everyone who is here is focussed on improving the treatment and care of people with MS and hopefully we can help capture some of that energy, thinking and commitment. If you have questions or topics you want me to check out, post a comment or tweet me and I will do what I can to track it down.

More soon!

Amy

Selling my artwork to raise funds and awareness of MS

9th September 2014 by laura.percival

Jill Heaps with artwork

Artist Jill Heaps tells us how she has adapted the way she works since being diagnosed with MS, and why she has decided to sell her own artworks to help raise funds for the MS Trust.

I started scribbling from an early age, very often on things I shouldn’t have, much to my mother’s dismay. I was good at crafty subjects at school and the first memory I have of drawing was in primary school when I got a gold star for a series of drawings of birds in flight. Although I did art at senior school it remained a hobby – I would draw celebrities that I liked. After starting work I enrolled at night school and got my O-level in Art – otherwise I am self taught.

Time went by and I continued to draw and paint various subjects while working, first as a clerical assistant then in an IT section. I had always had a love of animals and the countryside and wanted to capture these subjects in my artwork – I had seen wonderful work by artists like David Shepherd. I experimented with various techniques and studied books and video tapes, even talked to several professional artists, some of whom became good friends, and eventually I got it right. This led to having entries accepted for PAWS (Paint a Wildlife Subject), National Exhibition of Wildlife Art and also commissions for Pet Portraits.

I was very happy doing this but after a while I found I couldn’t concentrate as much and I was having trouble holding the pencils while I did the fine detail that made up the fur or feathers. Overall I was getting tired very easily but put it down to a stressful job. Then one day I felt a bit tingly down my left arm and numb on my side which got worse. I couldn’t walk straight and felt very strange.

I was diagnosed with relapsing remitting MS in June 2008. It has affected the hand/arm I use most and my concentration amongst many other things including walking and balance. Some days I feel so tired I can hardly eat. I did not know what to expect at the time of diagnosis. I had heard of MS briefly and could only see wheelchairs and paralysis in the future – I was scared, very scared. The MS Trust website came to the rescue. It had lots of answers, contacts and links to a forum that I joined where I talked to others, many in a worse state than me, who helped and supported me and still do today. I don’t know how my husband and myself would have got through without it. My MS has recently got worse and now I have spasms in my legs, but I’m getting through with the help of a specialist MS Nurse and Physiotherapist who would not be there if it wasn’t for organisations like the MS Trust.

This is why I now try to help raise funds and awareness of MS and the MS Trust. They are needed every day to help support people like me. I have entered pictures into the Secret Art Show for the last four years and I have now launched a Facebook page to show the world my other work – old and new, before and after diagnosis – and to help raise funds and awareness about this secretive disease.

Although I cannot do the detail in my artwork in the same way, it has opened a new door showing me how I can work in other looser ways with paint and brushes instead of pencils, and it is refreshing. I also paint gardens and views. Last year I moved from an urban environment to the countryside, so now I have no shortage of subjects. Now the question is what to paint first.

My page is updated every now and then with news and new pictures. Please take a look, I hope you like it. I am also hoping to have an exhibition of my work sometime to help raise awareness of MS. I will continue to enter the MS Trust’s Secret Art Show each year and help support the good work that they do. Maybe one day there will be a cure.

Many of Jill’s artworks are available to buy in aid of the MS Trust: visit Jill’s Facebook page to view and buy her work

Bandit Robin Marigold Geraniums

Could you make sure we continue to make a difference for people with MS?

8th September 2014 by Stephen

Remember a charity in your will week adYou may have noticed that this week is Remember a Charity in Your Will Week. Remember A Charity is a consortium of over 140 registered charities, including the MS Trust, working together to encourage people to think about supporting their favourite charity with a legacy.

It’s a common myth that you have to be wealthy to leave a gift in your will, but nothing could be further from the truth. After taking care of family and friends, you’ll be amazed at what one final gift, no matter how big or small, can do to help future generations affected by MS.

Carol has been volunteering in our fundraising team since 2008.  “I’m impressed by the dedication of the MS Trust team and the quality of the work they do. Hard-pressed MS nurses say they couldn’t do their jobs without the help of the Trust. Countless people with MS and their families say the Trust has helped them cope better with the day-to-day problems of living with MS.

I also know from my work at the Trust how tough it can be to raise funds for a condition that isn’t one of the fashionable causes. So when it came to deciding which charity to support in our wills, my husband and I didn’t have to think long!”

This year eight people have told us that they want our work to be available for future generations of people with MS.  They remembered us in their wills.  Their kindness will help us to provide our enquiry service and to research, write and publish new resources that can help people deal with the effects of MS and make the choices that are right for them.  It will also help us to train and support MS specialist nurses so they can provide the best possible care for people with MS.

Find out more about leaving a will and supporting the work of the MS Trust.

Your chance to take part in the world’s largest MS research conference!

2nd September 2014 by Stephen

Want to find out more about the latest MS research, straight from the scientists themselves? Here’s your chance!

ECTRIMS social media sessionNext week MS researchers from around the world will meet in Boston for the 2014 ECTRIMS-ACTRIMS conference. This is one of the biggest events in the MS science calendar and will see reports on the latest trial results and ideas for possible therapies.

In the past this type of event might have been restricted to MS scientists, but this year the neurology team behind the Barts MS Research Blog are opening the doors to everyone affected by MS with a series of online events.

First off there will be three online MS Question Time Hangouts discussing some of this year’s hot topics.

  • Wednesday 10 September: What therapies are effective in promoting remyelination (ie repairing damaged nervous systems)?
  • Thursday 11 September: Could focus on mitochondria (ie how our cells produce energy) be a key to treating progressive MS?
  • Friday 12 September: Daclizumab is a new MS drug treatment being trialled for relapsing remitting multiple sclerosis. What do its phase three results tell us about MS?

All chats will take place from 5–6pm UK time, and will feature Dr David Baker from Barts, plus two leading MS scientists. If you’d like to take part in any of these live chats you’ll need a Google Plus account so that you can use Google Hangouts and then head along to the Barts MS blog Google Plus page. To make sure you get invited to the chat or to submit questions for the scientists email bartsmsblog@gmail.com

If you’d just like to watch the chat you can do so at the Barts MS Blog youtube page.

MS Burning DebatesThere will also be three online MS Burning Debates featuring two leading MS scientists discussing the following issues

  • Wednesday 10 September: The Only Way is Pharma: academic trials go nowhere
  • Thursday 11 September: Repair from within or outside in? Is transplanting stem cells the best way forward? (This debate will be chaired by Amy Bowen, the MS Trust’s Director of Service Development)
  • Friday 12 September: Early, effective treatment is the only way

The debates will take place from 8:30–9:30pm and you can watch them live on the conference website.  You can add your contribution to the debate on twitter by using the hashtag #burningdebate. At the end of each debate there will be a twitter vote. Follow the Barts MS Blog twitter account for full details.

The MS Trust’s Director of Service Development, Amy Bowen, will be tweeting and blogging from the conference, sharing her thoughts on the latest  research and developments and how they could make a practical difference to people living with MS today. Follow her on twitter and look out for her posts on our blog!

 

A ski trip with a difference: Sarah’s Monster Ski experience

28th August 2014 by laura.percival

Sarah Burgess

As we look forward to the next Monster Ski in March 2015, Sarah Burgess who took part in this year’s ski challenge in Chamonix tells us what it was like to be part of this unique fundraising event.

As soon as I heard about Monster Ski I knew I wanted to take part! I am an avid skier, and the challenge of skiing the equivalent vertical descent of Mount Everest for three days in a row sounded just awesome! A little daunting, perhaps, but surely the chance of a lifetime. The MS Trust is a charity close to my heart – my husband was diagnosed with Primary Progressive MS about six years ago – so I didn’t hesitate to sign up!

The first challenge

The first part of the challenge was the fundraising, although it was actually a lot easier than I expected. I found it helped to break it down into smaller chunks, that way it didn’t seem so daunting. I did all the obvious things first – set up my fundraising page with Virgin Money Giving (which was actually really simple), then set about emailing all my friends, family and colleagues, linking in with my Facebook account, and generally badgering people!

Then I planned a series of fundraising events. We held a party on bonfire night, sold Christmas cards, did a collection in the local pub and made cakes. The single most successful event for me was a pub quiz – in addition to the funds raised through selling tickets, we held a raffle on the night and ended up raising over £500. Plus it was great fun! As long as you give yourself plenty of time, and plan events that you (and your friends) enjoy, it is surprisingly achievable.

Excitement kicked in

I have to admit to being a little apprehensive when I first arrived at Heathrow Airport, not knowing anyone or what to expect, but as soon as we all started arriving, swapping stories and getting to know each other, any trepidation rapidly vanished and excitement kicked in!

We were very well looked after the entire time. On arrival in Geneva we were met and quickly transferred to our hotel in Chamonix, which couldn’t have been better placed, right in the centre of town. I found myself sharing a room with another solo female participant, and we were both ecstatic to walk out onto our balcony and see the most amazing view of Mont Blanc!

The group comprised a complete mixture of people, some travelling together, some alone, many with personal links to MS (including one amazing guy who has MS himself and completed the entire challenge – probably skiing quicker than anyone else in the group). Despite the various different backgrounds, the group gelled incredibly well and many new friendships were made.

We skied from first lift to last

The three days of skiing were full-on and exhausting – certainly a challenge, and one which wasn’t made any easier by the slushy spring snow conditions. We split into two groups with Beatrice and Fred, our lovely ESF guides, and they monitored our progress to ensure we all covered the required vertical distance. Lunch and loo stops were speedy, and we literally skied from first to last lift each of the three days!

Other than one minor injury (a slight altercation with a snowboarder!), we all survived intact, and on the last evening were presented with our ‘awards’!

The trip was jam-packed from start to finish, with no time for Glühwein stops or sunbathing! Having said that though, the camaraderie was excellent and everyone returned home feeling accomplished and proud of our achievements. Some people added on a few days at the end, for a more leisurely experience of the Chamonix slopes – certainly a good idea if time permits, particularly if it is your only ski trip of the season.

I would certainly recommend this trip to anyone looking for a ski trip with a difference – pushing yourself to the limit on the slopes, whilst at the same time raising money for a great cause – what could be better?!

The MS Trust is now taking bookings for the next Monster Ski event, which will take place back in Chamonix from 13-17 March 2015. You can register before 8 September at the earlybird rate of just £99, then after that for £150. Find out more about Monster Ski and book your place

Monster Ski group

Monster Ski 2014 group

Ben’s Five in Five fundraiser

26th August 2014 by laura.percival

Ben Naughton

On 30 August, Ben Naughton (pictured right) will be taking on his first of five events to raise money for the MS Trust. Starting with the Rubicon Half Iron Man, Ben will complete five events in just five weeks! He is also taking on the Coniston Chill Swim (5.25 miles), Marathon Row at Cross Fit HG3, London to Paris cycle ride and finishing with the Berlin Marathon on 28 September. Here Ben tells us why he is taking on these incredible challenges.

I’m fundraising for my close friend James Al-Mudallal and to raise awareness about the condition he has suddenly developed.

James was diagnosed, out of the blue, with multiple sclerosis in 2013 at the age of just 23. He was working as a journalist for Trinity Mirror group in Cardiff, writing for Western Mail, South Wales Echo and Wales on Sunday. Since the diagnosis his life has dramatically changed, being back at the family home in London, surrounded by his close friends and family who are providing him with the support that he needs on a daily basis.

I met James whilst at Newcastle University and with his infectious character, he usually leaves a lasting impression on anyone he encounters. We lived together for four years, became gym partners, played football together and cooked a few odd dodgy meals, so it’s fair to say that he has and will continue to be a huge part of my life. James is one of life’s good ones, genuinely one of the kindest and most down to earth people you could ever want to meet. This is all in aid of him and others who are living with multiple sclerosis.

These five challenges represent a short journey for me, but just the beginning for James on his road to recovery.

Find out more about Ben’s events on his Five in Five blog

Sponsor Ben on Justgiving