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Staying steady: avoiding falls when you have MS

17th June 2013 by stephen.trousse

Falls: managing the ups and downs of MSThis week is Falls Awareness Week,  an annual event which aims to highlight things you can do to reduce your risk of falling and the local services available to help you to do this.

Falling is the commonest cause of accidental injury in the UK, with more than 2.7 million people affected each year. Falls can happen to anyone, although some of the symptoms of MS – such as problems with sight, mobility and continence – can increase the risk.

In 2008 the MS Trust published  Falls: managing the ups and downs of MS, a practical guide to coping with the risk of falling. The book looks at factors that increase the risk of falling and includes tips and suggestions for reducing the dangers. There is also a section on the fear of falling and information on how to remain safe should you have a fall.

Our newsletter Open Door also has regular features offering practical advice on issues such as avoiding falls. In the February issue this year, Alison Clarke, Clinical Specialist Physiotherapist, Mobility and Specialised Rehabilitation Centre at Northern General Hospital, Sheffield, wrote about MS and changes to walking and balance.

Alison highlighted how functional electrical stimulation (FES) is often very successful in addressing walking problems in MS, particularly issues with dropped foot. People with MS who use FES often notice significant changes to their walking including greater confidence and speed, less effort involved and fewer stumbles. To read more about FES click here.

Do you have any practical tips for avoiding falls or stumbles? Let us know in the comments below.

“The best thing I have ever done”

13th June 2013 by laura.percival

Clare Wallace holding her bicycle above her head

18 months ago Clare Wallace lost feeling in one leg and got the first inkling that she might have MS. A couple of weeks ago she cycled over 300 miles, raising over £5,000 to support the work of the MS Trust. Here she explains how and why the journey began.

 

It’s Saturday 1st June 2013 and I am standing in the Grand Place, Brussels. I’m exhausted and my legs are shaking. Nothing unusual there, as I’m currently awaiting my diagnosis for MS and have got used to these feelings over the past 18 months. But this time it’s caused by something very different. I am standing holding my bike above my head, having my photograph taken by my new group of friends. I’ve just finished cycling 335 miles from London to Brussels via Amsterdam and I am full of pride, knowing that I’ve managed to raise over £5,000 for the MS Trust.

So how did I get here? How did I compete a challenge that in my pre-MS days I probably would never have considered, as I would never have thought I was capable of it?

Something inside me had changed

On 14th January 2012 I woke up at home. I had not changed any part of my life, but something inside me had changed. I couldn’t feel my toes but didn’t think too much of it until the next morning when I couldn’t feel all up my right leg. Everything still moved but I had numbness and couldn’t do anything to wake my leg and feet back up again. With the help of an excellent GP I was referred to the local neurologist and two days later was in hospital having scans and tests.

At first no one mentioned MS, it was all about brain tumours and unpronounceable diseases and conditions. They slowly ticked various ailments I had never heard of from the list and with each appointment I was left wondering what was wrong with me as I knew it was not normal. Four months in, and still without any feeling in my toes, I went for a routine check up with my neurologist.

A million and one questions

I’m sitting in the neurologist’s office and she drops the bomb, “I think you have MS”. I couldn’t quite believe what I was hearing. MS? Isn’t that what old people get? Am I going to end up in a wheelchair? Will I be able to do my job? A million and one questions and instead I was sent off wondering what was going on and where do I go next, without any help or support. This is when I found the MS Trust.

My dad contacted them asking what to do. The information from them was brilliant and thanks to them I am now in touch with the MS specialist team at University Hospital Southampton Neurology Department. The Trust continued to send us useful information and in one mailing they snuck in a little poster, a glorious scene of a man on a bike in the sunshine riding past a windmill, asking if anyone wanted to do the 3 Cities Cycle Ride to raise funds for the MS Trust. “Why not?” I thought, “Looks like fun,” and I got straight online and entered. Then I woke up at 3am wondering what I had let myself in for!

The challenge

I spent a miserable, cold winter training out on my new bike, counting down the days and trying to raise sponsorship. I sat on my bike at local supermarkets for hours on end with collection boxes, amazed at the generosity of people I didn’t know. The months flew past and before I knew it I was sitting on my bike in London for the start of day one.

The first day I climbed hill after hill and traveled over 91 miles from London to Harwich, arriving at the port and sailing overnight to the Hook of Holland. The next three glorious but tiring days were spent pedaling along the cycle paths. First from the Hook of Holland to Amsterdam, covering 60 miles along the coast and through the sand dunes. Then on into Belgium with the longest ride of all, some 117 miles. I have never been so pleased as I was to see the final orange flags highlighting the way and taking me to the hotel in Turnhout for the night! Then the final day, 71 miles to Brussels, with people cheering and clapping as we arrived. We pedaled past canals and windmills alongside the locals, and enjoyed plenty of waffles along the way.

This challenge is the best thing I have ever done. A year ago I would never have thought I would have been capable of completing such a ride and I loved every second of it. I have met some wonderful people along the way, who I hope to call friends for the rest of my life. Many people have told me I have inspired them and they wish they could do something like this. My answer? Go and do it: you will be amazed at what you can achieve. And the best thing about it? Giving something back to those who helped me so much when I needed it the most.

Sponsor Clare via her online fundraising page

Find out about the next 3 Cities Cycle Ride

Clare Wallace and friends on the 3 Cities Cycle Ride

My parachute jump for the MS Trust

12th June 2013 by laura.percival

Guest blog by Liz Blake

My name is Liz Blake and I work for the MS Trust. Part of my role here is doing the admin for our parachuting fundraising events. I was seriously thinking of doing a parachute jump myself to help raise funds for the MS Trust, so when a company booking of ten people from Active-PCB Solutions came in, I thought it would be a good idea to join this team and make a day of it.

We jumped at the Chiltern Park Aerodrome on Sunday 9 June and it was fantastic, exhilarating and scary at the same time. But what a start to the day, we thought we weren’t going to jump at all due to the low heavy cloud. I nearly went home. And then suddenly the first lot were in the air, at 2.20 in the afternoon!

We had some really useful instruction in the morning on how to skydive and were told all about the safety aspect of it. On with the jumpsuits and harnesses. There was time to eat a burger and watch the first people jump and land safely. And then it was my turn, walking to the plane and nearly getting blown off the steps up to the aircraft due to the draft from the propeller!

Liz Blake skydive

The small aircraft was off climbing to a height of 10,000ft and getting colder all the time. My instructor Deano who was a lovely chap, really friendly and reassuring, gave me a reminder of what we were going to do as we approached the point where we would exit the plane. Then the first guy jumped out almost as if he was getting out of bed, so relaxed. We shuffled to the edge of the plane, me in front. I had to dangle my legs outside the opening and flip them under, next thing a slight rock forward and we were out!

liz-blake2

It was absolutely terrifying at that moment. I screamed and now looking at the photo I know why – I’d forgotten my instruction to keep my head back and we were diving down toward the earth! The cameraman appeared in front of me smiling and waving and put me at ease and we continued to freefall for about 30 seconds. Falling at a rate of around 120 mph, wind rushing past your face is not the most attractive look in the world but its over so quickly.

liz-blake3

Next thing I got a tap on the arm to warn me that the main canopy was going to be deployed. It felt like we shot up in the air really fast, absolutely brilliant, and then we were floating. We could see all over the countryside and it was an absolutely fabulous feeling, just hanging there seems a bit surreal. We could see the River Thames, Didcot Power Station and as we approached the airfield I could see my son waving madly. We came in really gently and had a lovely soft landing. Phew!! What a relief.

liz-blake4

I’ve raised a total of £1,480 for the MS Trust, but I didn’t do this through sponsorship alone. I’m a modern jive dancer and go to various dance venues in Hertfordshire, so I thought I would hold my own charity dance to raise funds. It was quite well attended, everyone said there was a great atmosphere and that they had a wonderful evening. As well as the money from ticket sales, we did a raffle on the night and raised £170. I also put my sponsor form out at work and was absolutely amazed at how much everyone donated and how many did. I’ve raised a lot more than I thought I could.

I’m still buzzing from it.

liz-blake5

Find out how you can take part in a sponsored skydive for the MS Trust

Man vs Miles 11: completing 11 marathons in 11 days for the MS Trust

10th June 2013 by laura.percival

Andy Humphries

Guest blog by Andrew Humphries

I sit here a month and a half away from the biggest challenge of my life – running 11 marathons in 11 days – and I am starting to ponder what I’m attempting to do!

Training is going well and sponsorship is going well, so why the sudden bout of apprehension? Well, the prospect of 11 lots of 26.2 miles is starting to look daunting. But in truth it’s the prospect of failing that’s the worry! I’m not a pessimist, in fact I’m the opposite. But failing? It has never been an option for me.

How did I get here? Since seeing Eddie Izzard run back-to-back marathons I have been keen to see how far I can push my body. Originally I wanted to find three others to run from the top of the UK to the bottom, but apparently no one else is crazy enough. So it fell to me to figure it out on my own. Why 11 you may also be wondering? No real significance, but I needed a start point and a finish, so I worked out how far it was from my grandparents in Cornwall to my home in Daventry. Plus the prospect of running through Cornwall, my favourite place in the world, was supremely appealing.

Thankfully it’s not just me on the running trail (though it is only me running all 11). Joining me will be the fantastic sports therapist Martyn Standish and my best friend and fellow running enthusiast Daniel Hughes.

Daniel is where the MS link comes in. He’s been my best friend for the past 10 years and it’s been heartbreaking at times seeing him dealing with MS since his diagnosis a few years back. As many know, it’s not only the illness, but often issues around it that are the problem. This is why the MS Trust is so close to the heart.

Daniel is going to try to run at least one of the marathons with me, which is amazing.

I started this blog post admitting some worries that I have, but I finish it with a contradictory statement. 11 marathons in 11 days offers many concerns but the thought of completing it, with two of my best friends enjoying the ride and offering me a helping hand, is one of the most exciting challenges I have ever set myself.

Please spread the word! Our Facebook page is https://www.facebook.com/manvsmiles11 and our Just Giving Page is http://www.justgiving.com/andyhumphries.

Thanks, Andy Humphries.

Great cycling at the Goodwood Motor Circuit

6th June 2013 by laura.percival

MS Trust supporter Andrew Parkes shares his experience of taking part in the MS Circuit Challenge at Goodwood.

This was my second year taking part in the MS Trust’s cycle race at Goodwood and I knocked 20 mins off my time – 2hrs 15mins to beat next year then! I support the event for several reasons and it has been great fun to attend with my family and friends. My younger brother suffers with secondary progressive MS so I like to try and do something for an MS charity each year.

I enjoy cycling, mainly mountain biking, and classic cars in my spare time. Having cycled round the Nurburgring, Isle of Man TT course and Northwest 200 course, the Goodwood Motor Circuit seemed perfect to add to the list.

The day is a personal challenge and also fun for the kids. It takes about 1 1/2 hrs to travel down from where I live near Watford. If the weather is good, as it has been for the last few years, then the venue is just a spectacular treat to play in. It is also very accessible enabling all to get around with the minimum of fuss.

Friends that I have taken with me to the event have had a great time. The relaxed, safe atmosphere meant they enjoyed the venue. I think most took it for granted that Spitfires and Mustangs were taking off and landing while we were there – a great spectacle.

The afternoon lap ‘by any means’ is great fun and certainly an enjoyable time with the children, animals, various modes of transport and smiling people taking some exercise. My favoured means has been a skateboard being towed by a trail hound dog! We enjoyed the picnic before and after on the grass and the cakes on sale!

Thank you Kenny Smith and Lord March for making the venue accessible to the MS Trust. I think that with cycling on the up and with a little marketing the event will grow and grow and hopefully raise more and more for the MS Trust.

Find out more about the MS Circuit Challenge and view photos from the day

Cyclists at Goodwood

Life after work: how did you manage the change?

4th June 2013 by stephen.trousse

Here at the MS Trust we are currently busy preparing the next issue of our quarterly newsletter, Open Door. The new issue, due out in August, has a feature on the changing world of work, exploring the various employment options open to you when you are diagnosed with MS.

We have an article by a person with MS who fought back against workplace bullying and we speak to an HR manager who was diagnosed with MS about her perspective on employment issues. We also have a feature on organisations that can help you, from providing advice, to helping you make adjustments to continue to work, or even supporting you if you decide to become self-employed.

One aspect of work and MS that is relatively underdiscussed is life after work. As much as most people would like to continue to work for as long as possible, there comes a point when some will have to think about giving up their job, and this can be a very difficult adjustment to make, financially, emotionally and psychologically.

If you have been through this experience we’d like to hear your thoughts. What was the hardest part about giving up work? Have there been positive aspects to the change? What do you know now that you wish you’d known then? And what advice would give to people considering leaving their job because of MS? Let us know in the comments below and we’ll feature a selection of the comments in our Open Door article. If you’d prefer you can email us with your thoughts.

If you don’t already receive Open Door you can see back issues online and find out how you can subscribe here.

All is revealed!

2nd June 2013 by stephen.trousse

MS Trust founder and trustee Jill Holt explains how she came up with the idea for the MS Trust Secret Art Show

Back in 2010, my partner Stuart and I put on the first Secret Art Show for the MS Trust in our home town of York.

The idea for the event came from the need to do something a little bit different to raise money for a sponsored event that Stuart and I were taking part in on behalf of the MS Trust. (It was the MS Trust’s Monster Ski. This is an event where you can ski the height of Mount Everest every day. It’s fabulous and I would thoroughly recommend it to any skier.)

Jill HoltThe first show was an actual show in a physical location: it ran for two weeks in a central venue in York. Starting to collect art from scratch was a bit daunting, but I had given myself 18 months to set it all up and, with help and direction from a couple of artist friends, I started contacting as many Yorkshire artists as possible and then slowly expanded further afield. The response was tremendous and eventually we collected around 700 pieces of art. The show was a huge success and we raised an amazing £20,000!

After the show finished a number of the artists contacted me again as they were keen to do something more to support the MS Trust. I chatted this through with Jo, Fundraising and Marketing Director at the MS Trust, and we decided to try the show out as an online event. Since then we have had four online shows and these have raised a further £46,000 for the MS Trust. I never would have thought that, from a small idea, the Secret Art Show would become such an amazing success!

But we can’t raise these large amounts of money or put on the Secret Art Shows without the support of the artists and this blog post gives me the opportunity to thank you all so very much!

I would encourage anyone interested in original art to have a look at the show when it opens for viewing at 9am on 24 June. It promises to be a great show with some very special pieces, all available to buy for £45 plus P&P.

Click here to read more about the Secret Art Show and how it supports the work of the MS Trust.

Volunteering for the MS Trust: get involved and help us support everyone affected by MS!

31st May 2013 by stephen.trousse

Volunteers Week is the annual national celebration of the fantastic contribution millions of volunteers make across the UK – and it’s taking place next week, from the 1-7 June 2013.

Every year over 20 million people across England and the UK volunteer, donating more than 100 million hours to their communities each week.

How can you get involved and help support the work of the MS Trust? One great way you can help is by volunteering at a Cards for Good Causes shop.

c4gcCards for Good Causes manages a national network of around 300 temporary charity Christmas card shops in churches, libraries, community and museums. They sell cards on behalf of more than 300 national and local charities.

Sales from Cards for Good Causes shops contribute on average £48,000 every year to the MS Trust. That’s enough to fund an MS Trust research project, like our current research into Secondary Progressive MS. This results of this project will enable us to design improved healthcare services, train health professionals and develop information resources to help support people with MS as their condition becomes more progressive, through what is a very physically and emotionally challenging period.

But in order for us to participate in these shops and continue to help fund projects like this, we need your help. Most Cards for Good Causes shops are staffed by volunteers from the participating charities. So we urgently need people who can spare one morning or afternoon per week in the eight weeks before Christmas. Duties might include operating a simple electronic till, dealing with payments and keeping the shop tidy.

Volunteering at a Cards for Good Causes shop can be a great way to get work experience, learn new skills and meet new people in a friendly environment – all while supporting the work of the MS Trust.

Last year MS Trust supporter Rachael helped in a shop in Worcester. “Volunteering in Cards for Good Causes helped me to regain some confidence after leaving my full-time job due to the fatigue and cognitive difficulties I’d been experiencing with my MS. I took to the till quickly, which was reassuring, and really enjoyed meeting fellow volunteers and serving customers.”

“Volunteering helps me interact with people and now feel part of the team,” said Sharon who helped at a shop in Bournemouth. “Isolation was an issue when I was first diagnosed. I was not afraid but this enabled me to re-invent myself and gave me hope and courage.”

So if you’re interested in getting involved, let us know. You can call our Fundraising Team on 01462 476707 or email fundraising@mstrust.org.uk. We need additional volunteers in many locations in England, including various locations in both London and Essex. For more about the full range of fundraising opportunities with the MS Trust visit mstrust.org.uk/fundraising

Today is World MS Day: help spread the word!

29th May 2013 by stephen.trousse

It’s not so long ago that we were busy spreading the word about MS Awareness Week in the UK. But today is our chance to lend our voices to the global chorus of World MS Day.

It’s now estimated that MS affects two million people worldwide, although it is likely that many hundreds of thousands more remain undiagnosed. World MS Day was launched in 2009 by the MS International Federation, a network of MS organisations across the world. Since then the event has grown from strength to strength, reaching hundreds of thousands of people in more than 67 countries worldwide and continuing to grow every year.

This year you are encouraged to take part in World MS Day by sharing your motto, the words that inspire you to face up to life’s challenges. You don’t have to be living with MS to take part. By uploading your motto at worldmsday.org you can “join the global movement of people working to raise awareness of MS”.

What’s the MS Trust’s motto? Well, Chris Jones who co-founded the MS Trust with Jill Holt in 1993, once wrote “No matter how small the beginnings, you should never think you can’t make a difference!” Those still seem like pretty good words to live by to us. What about you?

Visit worldmsday.org to learn about how young people across the globe overcome the adversity posed by MS, and to share your own mottos with others. And visit our Spread The Word page for some ideas from us about how you can raise awareness about MS.

Can you help name our resource for people newly diagnosed with MS?

24th May 2013 by helena.jidborg

The MS Trust is developing a new way to provide information about MS to people who have just been diagnosed.

The background goes like this. In 2012 we commissioned some research into the sort of information that people prefer at, or soon after, diagnosis. It turned out that some people want very little information and some people would like loads and most people are somewhere in between. Many people have phases when they want information and then phases when they don’t.

Our challenge now is to develop new publications and areas of our web site which allow people to get as much info as they want, when they want. Some info is important for everyone to know straight away but the rest can be a pick and mix kind of approach.

We are preparing a small introductory resource which will help answer the most common questions that people have after diagnosis. It is quite small and those who want more information will be able to follow the signposts to get more info on the topics that are important to them.

So the question is “What to call the resource”?

At the moment, many newly diagnosed people look at our bigger booklet called “MS what does it mean for me?” The new booklet will replace this one so perhaps it could be called the same thing.

We’ve had a few other suggestions already:

- What now I have been diagnosed with MS?

- What’s next?

- Going forward

- What would help me?

 

Tell us your ideas.

Do you have any inspiration? Do you like one of the suggestions above?

Should it have MS in the title? What would be positive and helpful and not worrying to someone who has just been diagnosed?

Please tell us using the form below or email infoteam@mstrust.org.uk

Thank you. We appreciate your help.

 

Jane, Information Officer