Open Door February 2018 by MS Trust

Open Door Quarterly newsletter of the MS Trust

February 2018

“I don’t want anyone to go through the same thing I did” Find out how Amy dealt with being diagnosed at 14, and help us make sure that young people don’t have to face MS alone

Also in this issue Your views on the NICE drug consultation

How resistance training can help you stay active and healthy

Be kind to your mind: try out our guided mindfulness exercise

Ask an expert: sex and MS

Welcome to the February issue of Open Door Hello! I am really honoured to be new chief executive of the MS Trust. I joined at the beginning of December after 10 years working at the leading disability charity, the Papworth Trust. There’s a lot I’m excited about for 2018, but one of the biggest things is our anniversary. It’s 25 years since the charity was founded by Chris and Jill and together we have achieved so much in that time. I think our 25th birthday gives us a great springboard to shout about some of the brilliant things we do – such as our new resources for young people affected by MS which we highlight in this issue. One of the things I’m personally really looking forward

to in 2018 is going on a big bike ride! I love cycling and I want to meet more of the MS Trust’s wonderful supporters, so I’ve signed up for our London to Amsterdam ride which sets off in June. I hope to do two things: raise the profile of the MS Trust and also raise lots of money towards our MS Specialist Nurse and Advanced MS Champions programmes. These are ambitious projects that we Open Door will hope will transform the lives of people living with always be free to our MS across the UK. But we need your help. You readers, but it costs us £2 don’t have to get on your bike – we introduce lots to produce and post each of ways to be Bold in Blue on p20. However you issue to you. decide to support our work, I hope you will join us If you’d like to donate to in 2018. cover these costs text OPEN44 £2 to David Martin, Chief Executive, MS Trust 70070

How we’ve been working hard for people with MS since our last issue Feeding your views back to NICE on their decision to recommend the withdrawal of 5 MS drugs When NICE decided to publish their preliminary recommendations just before Christmas, we asked you for your views. We were blown away by your response. Over 500 of you shared your opinions, as well as over 100 MS health professionals. We’ve now responded in the strongest possible terms to NICE and we hope they will rethink their decision. Find out more on p4 and stay up to date at mstrust.org.uk/news

Starting work on the Advanced MS Champions programme Last October we were the lucky recipients of a cheque for £500,000 after being chosen as The October Club’s charity of the year. The money was raised to support our Advanced MS Champions programme, our project to address growing inequities in access to MS services, Over the next three years we are going to be funding six Champions across the UK. They are going to be responsible for working across NHS and social care boundaries to improve support and care for people living with some of the most difficult effects of MS. We’re incredibly excited by this ambitious project, which we believe will transform the way MS services are delivered across the UK. Right now we’ve just had our first steering committee meeting and we’re talking to a number of potential sites. We’re going to officially launch the programme at the House of Lords on 20 February – look out for progress reports in future issues and on our social media channels. Multiple Sclerosis Trust, Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 E info@mstrust.org.uk W mstrust.org.uk Registered charity no. 1088353 2

Open Door February 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

Meeting our fantastic supporters at Captify Last year, motivated by the experiences of some of their staff, Captify approached us because they wanted to help people living with MS now. Just a few months later and they have already raised over £13,500 and they are still going. Fundraising events have included a battle of the bands, a bake off, Christmas activities and Movember – and a major trek to the summit of Mt Kilimanjaro is next. We are hugely grateful to Captify for their hard work, energy and drive!

Contents News

NICE proposes rejecting 5 MS drugs, ocrelizumab licensed in the EU, plus news on the QuDoS in MS recognition programme

Research update

New research on whether insoles can help with walking problems, monitoring manual dexterity and investigating the link between diet and disability

Young people and MS

Stay active: resistance training

Selling Christmas cards all over the UK

Introducing our new project to make sure that young people don’t have to face MS alone

We talk to physiotherapist Rachel Ross about evidence that resistance training can have positive effects on your brain

Christmas card sales are a vital source of income for the MS Trust and so we would like to say a big thank you to everyone who bought MS Trust cards, and to all of you who volunteered in local Christmas card shops. It makes a real difference and we are very grateful for your support. You may also be interested to know that our top selling Christmas card was Fork Handles.

Focus on: mindfulness

Ask an expert: sex and MS

Justin Standfield tells us how mindfulness has helped him deal with the MS hug, while Benedict Hoff shares a guided exercise

Lesley Catterall and Denise Middleton answer your questions about sex and MS

Supporting your nurses and therapists to make even more of a difference We’ve been pulling together the feedback from our MS health professional conference last year, and it’s fair to say that the delegates really appreciated the event. “This was my first conference and I’ve found it really interesting and informative,” said Gail Shore, an MS nurse from Wolverhampton. “My highlight has been meeting other health professionals. It’s the only way we can learn sometimes, particularly when you’re working in one trust, as you don’t get the outside information you get here. Learning new things is really important to give our patients the best outcomes”.

Get involved

15 minutes with MS Trust supporter Debbie Worthington

Are you ready to be Bold in Blue in 2018? Plus our new Miles for MS event and all the latest exciting opportunities to support our work and make a difference

Debbie tells us she’s why been inspired to start running and raising funds for the MS Trust

Open Door February 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

News NICE proposes rejecting 5 drugs for relapsing MS NICE has recommended Extavia, but rejected Copaxone, Avonex, Betaferon, Plegridy and Rebif in its preliminary appraisal of MS drugs. This has been met with shock and dismay in the MS community. The MS Trust has responded to NICE’s consultation in the strongest possible terms On 20 December 2017 NICE published an appraisal consultation document on the use of beta interferons and glatiramer acetate for treating MS in the NHS in England. It is not yet clear what implications this will have in Scotland, Northern Ireland and Wales. This consultation followed a review of the cost effectiveness of the disease modifying drugs Copaxone, Avonex, Betaferon, Extavia, Plegridy and Rebif. NICE recommended the following points for consultation: • Extavia was recommended as a treatment for people with relapsing remitting MS or secondary progressive MS with continued relapses. • Copaxone, Avonex, Betaferon, Plegridy and Rebif were not recommended. • Anyone already taking one of the drugs will not be affected by this guidance and can continue without change until they and their neurologist consider it appropriate to stop. NICE has acknowledged that all six drugs are equally effective at reducing the number of relapses and slowing down disability

progression. The decision to approve Extavia and not the other five drugs is based on the cost of the drugs; Copaxone and the other beta interferons are more expensive than Extavia.

Our response We are very disappointed with NICE’s recommendations and we do not believe they are in the best interests of people with MS or the NHS. Before Christmas we set up online consultations for people with MS and for specialist MS health professionals to gather views on the NICE recommendations. We received over 500 responses from people with MS and over 100 responses from health professionals – thank you very much for your input! Hearing your views was incredibly helpful, and we have used them to help us write our response to NICE. We strongly believe that all current treatments should remain available as a treatment option for all eligible patients. We are particularly disappointed that the NICE recommendations do not acknowledge individuality and would take away choice from

More about MS and walking problems

In MS, many problems associated with walking are initially caused by the slowed or altered nerve conduction, which results in muscle weakness, spasm or spasticity (muscle stiffness) and sensory changes. However, other MS symptoms can have a large impact on walking, such as difficulties with balance, pain, tremor, dizziness and visual problems. For example, vision that is double, blurred or has altered depth perception can make it difficult to place your feet or judge steps and kerbs. The best way forward depends on what is causing the walking difficulties. A health professional, such as a GP, MS nurse or physiotherapist can advise. Treatment may To find out more involve physiotherapy about dealing with or drug treatments walking problems for to alleviate people with MS visit specific underlying mstrust.org.uk/ symptoms such as spasticity. walking-difficulties

Open Door February 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

Evaluating a new test for hand and arm function Hand and arm function is vital for many daily activities, but it’s often overlooked in MS clinical trials, which have tended to focus on walking ability as an index of disability. A team of UK researchers have developed a cheap cardboard version of the nine hole peg test to enable people with MS to self-monitor their manual dexterity at home. This study looked at whether the cardboard version generated results which were comparable to those produced using the conventional plastic version Authors Dubuisson N, et al Title Validation of an environmentally-friendly and affordable cardboard 9-hole peg test Journal Multiple Sclerosis and Related Disorders 2017;17:172-176 > Read the summary: tinyurl.com/9-hole-peg

The study 177 volunteers, 68 without MS and 109 with MS at different stages carried out the 9 hole peg test (9HPT). In this test, you sit at a table with a small, shallow bowl holding nine pegs and a block containing nine empty holes. You are asked to pick up the nine pegs, one at a time, as quickly as possible, put them in the nine holes and, once they are in the holes, remove them again as quickly as possible one at a time, replacing them into the shallow container. The total time to complete the task is recorded. Each volunteer carried out two tests of the 9HPT with their dominant hand and two with their non-dominant hand using both plastic and cardboard versions.

The results People completed the cardboard test slightly faster; for people with MS the average time to complete the cardboard test was 28.61 seconds versus 30.47 for the plastic version; for people without MS, the average for the cardboard version was 18.35 compared to 19.19 for the plastic versions. Analysis of the results found that an individual’s performance on the two versions

were very similar. There was less variation between an individual’s first and second attempt using the cardboard version compared to first and second attempts using the plastic version. Two thirds of the volunteers with MS preferred the cardboard version. Users found the wooden pegs easier to grasp and manipulate and the cardboard tray easier to use. There is a tendency to knock the pegs from the bowl in the plastic version, which slows down the performance of the test.

What does it mean? The results show that the cardboard version of the 9HPT is at least equivalent to the plastic version and is actually preferred by the majority of users. The researchers concluded that they had achieved their goal of developing a low-cost, recyclable and environmentally-friendly alternative to the plastic nine hole peg test.

More about the 9-hole peg test

Why is the 9HPT such a good test of hand and arm function? To perform the 9HPT you need: • upper limb strength to move the hand • vision to locate the pegs • depth perception to accurately judge picking-up and placing the pegs • sensation to feel and grasp the pegs • coordination to complete the movements smoothly. You can buy your own cardboard version of the nine hole peg test at clinicspeak.com where you can also find out much more about monitoring your MS yourself. MS is a variable condition and when you see your nurse or neurologist for a check-up or review, they are only seeing how you are on that particular day. Any tests or assessments that are done are usually short and they are done in a clinic setting, so they don’t necessarily reflect how you might complete a test in day to day life. Carrying out tests periodically at home could provide valuable additional information about fluctuations in your MS symptoms. You might also find it To find out helpful to see how your more about selfown MS changes in management see our response to different free book MS and Me, factors, such as available at activity levels, stress mstrust.org.uk/ or diet or at different shop times of the year.

Open Door February 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

Is there a link between diet and disability in MS? Many people are interested in the potential to manage their MS through diet. The New Year is a time when many of us make resolutions to improve our diet and fitness, but is there scientific evidence to encourage our good intentions? To shed more light on the impact of what we eat on the course of MS, this study investigated the link between diet and disability in people with MS Author Fitzgerald KC, et al Title Diet quality is associated with disability and symptom severity in multiple sclerosis Journal Neurology 2018 Jan 2;90(1):e1-e11 > Read the full study: tinyurl.com/ms-diet-disability

The study Nearly 7,000 people, recruited from a North American MS register, took part in this study. They were asked to complete a dietary questionnaire and score the severity of their MS symptoms. They were also asked if they were following a specific diet and asked whether they smoked, their alcohol intake, level of exercise, household income, height and weight. People were assigned to one of five groups based on the healthiness of their diet. The healthiest diet had the highest amounts of fruits, vegetables, pulses and whole grains and lowest amounts of added sugars and red or processed meat. Researchers also identified those people with a healthier lifestyle which included a better than average diet, maintained healthy weight, regular exercise and no smoking.

The results Associations between the five diet groups and severity of MS symptoms and disability were analysed. The researchers also looked at links between a healthy lifestyle and MS symptoms. Participants with the healthiest

diet were 20% less likely to have severe disability and 20% less likely to have severe depression than those with the least healthy diet. Diet quality was not associated with severity of fatigue, pain or cognitive symptoms. People with a healthy lifestyle were 50% less likely to experience depression, 30% less likely to have severe fatigue, 40% less likely to have pain and 55% less likely to have severe disability than people who had a less healthy lifestyle.

What does it mean? The study found that a healthy diet and lifestyle was associated with lower levels of disability and MS symptom severity. However, the results do not necessarily confirm that what you eat has a direct impact on your MS symptoms. The results could equally well be interpreted as showing that when you have lower levels of disability, it’s easier to eat well and have a healthy lifestyle. A major strength of the study is the large number of people who took part, adding weight to the results. However, as with any survey, participants are self-selecting and in this study tended to be older

(average age 60 years), mainly white and had been diagnosed with MS for an average of nearly 20 years. This may have biased the results. As this was a one-off survey, it can’t shed light on whether people who follow a healthy diet continue to have lower levels of disability in the long term.

More about healthy eating

We need more research to get a better understanding of the influence of a healthy lifestyle on the course of MS. In the meantime, keeping to a balanced diet, high in fruit and veg and low in fats, together with regular exercise is important for all of us to reduce the risk of conditions such as heart disease, stroke and diabetes. If you are struggling to keep up New Year’s resolutions, get friends and family to join in so you can encourage each other when the going gets tough. NHS Choices has 10 tips to make your New Year’s resolutions a success tinyurl.com/new-year-tips

Open Door February 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

To find out more about diet and MS visit mstrust.org.uk/a-z/ diet

Young people and MS Increasing numbers of young people are being affected by MS - either because they have the disease themselves, or because a family member has been diagnosed. There isn’t enough reliable, accessible information to help them understand their condition. We’re determined to change this. But we need your help There is never a good time to be diagnosed with MS. Coming to terms with the news that you’ve got a disease that’s going to be with you for the rest of your life is a huge challenge for everyone. But imagine you’re having to deal with it at 14. When you’re going through huge changes, making big plans for the future and going through all the stresses of school and exams. That’s what happened to Amy, who tells us about her experience over the page. More and more young people like Amy are being affected by MS. Because we’re getting better at diagnosing MS earlier, there are more teenagers, and children even younger, having to adjust to diagnosis, treatment, and planning for a future with MS. There are also increasing numbers of young people affected by MS because a family member has been diagnosed. How does a young child understand that their mum or dad can’t play football with them because of MS fatigue, or can’t pick them up and hug them because of muscle spasticity or ataxia? The MS Trust pioneered publishing accessible information about MS for young people. In 2002 we published My Dad’s Got MS, which told the story of Jack and his dad, and explained

some of the symptoms of MS for children. In 2006 we published The Young Person’s Guide to MS which introduced basic facts about the disease to teenagers who have a parent with MS. And in 2009 we published The Kids Guide to MS which used cartoons, experiments and games to help younger children understand more about MS. These were some of the most well received publications the MS Trust has ever produced. Parents and children alike thanked us for helping make some difficult conversations a little easier and throwing some light on what can sometimes be a very confusing disease. But times change, and people now get their information in many different ways. If you’re a young person, or if you have children or young relatives or friends, you’ll know about the bewildering range of apps, video services and social media channels changing the way we communicate. If you’re a young person today, if you want to understand something new, chances are you’ll Google it, or look on YouTube. The MS Trust has been producing more and more videos over the last few years (check out our Facebook page at facebook.com/mstrustuk or our YouTube channel youtube. com/mstrust). It’s a great way of

Were you affected by MS as a young person – either directly or via a family member? Share your story and help us raise awareness – see the survey on p23.

sharing stories and making complicated issues a little easier to understand. We’re now creating a new dedicated channel for young people called MSTV which we’re going to launch in MS Awareness Week, which this year runs from 23-29 April. We want to create fun, informative, engaging videos that help young people understand more about MS and learn how they can manage the disease themselves, or help friends or relatives. But we need your help. There are lots of ways you can get involved: • Share your experience and help us raise awareness. See the survey on p23 or visit mstrust. org.uk/young-people-survey • If you’re a young person yourself and you’d like to help us by appearing in or contributing to our videos visit mstrust.org.uk/youngpeople or call us on 01462 476700. • If you’d like to support our work by fundraising or making a donation, see p20 for more about Be Bold in Blue, visit mstrust.org.uk/donate or call 01462 476707. Together we can make sure that no one has to face MS alone.

Open Door February 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

“I don’t want anyone to go through the same thing I did” Amy was diagnosed with MS when she was just 14 years old. She faced isolation, bullying and despair, but has emerged from her experience stronger, and determined to help the MS Trust make sure no young person ever has to take on MS alone.

I’m Amy and I was diagnosed with multiple sclerosis when I was 14 years old. I’m 17 now and I’m studying for my A levels. I enjoy making art; I think my favourite artist is Andy Warhol. I love his bold portrait of Marilyn Monroe. The first symptom I remember having was I couldn’t feel my legs and my right arm. I knew it wasn’t right but I only told my mum. I waited two weeks just getting more and more worried, and in the end I went to the doctor. He asked me to touch my nose with my finger. I was really nervous and I knew it didn’t feel right. I had double vision. He asked me to go back to the waiting room. I waited and waited and eventually the doctor told me I had to go to hospital. I didn’t really know what to do. I was there for about six hours with my dad and I was so nervous. I was lying there crying. When I had the MRI scan they saw lesions on my brain and they said that there was demyelination. I didn’t know what that was. I went to hospital and it went from there. I had intravenous steroids and stuff like that. It took quite a long time because I was so young. They don’t often see demyelination and white lesions on young people’s brains. I just thought “What’s happening to me?”. I was just starting to choose my GCSEs and my friends were quite worried about me. I wasn’t in school for quite a while. I went to my hospital where I got a pediatric neurologist and then I had all sorts done. I had the lumbar puncture and that was first time anyone mentioned MS. They told me there was demyelination and it could be MS. When I went back to the clinic in August after another MRI scan they told me it had

progressed and I had more lesions on my brain. That’s when I was diagnosed with MS.

I thought I was going to die

I was on my own to be honest. Nobody really explained what MS was.

I had never heard of it. I was crying every day because I was thinking what is wrong with me? I thought I was going to die. It got a lot worse after I was diagnosed. I didn’t know what to do. I was on my own to be honest. Nobody really explained what MS was. When I went to the specialist in 2015 I got a nurse who explained to me that MS is a condition that affects your brain and your senses. I was confused at first. I did Google it and a lot of other stuff. I wanted to know what might happen. I found out about a lot of symptoms that haven’t happened to me. They could do one day. Most things haven’t happened yet, so I’m lucky in that respect. Eventually I got a long letter saying I had MS and then a description of it. I just started crying. I didn’t go to school. I was just so sad. I was like “This is me forever now”. My mum said “I I wish it was me. I would take it off you if I could”. My dad was struggling too. They struggled to understand what I was going through and because I was crying all the time I couldn’t really express my thoughts properly.

At school they thought I was lying I got quite angry and frustrated. I think anyone would be if they couldn’t write or walk properly. And not having people understand properly because I was so young.

Open Door February 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

I see the world is a bigger place now. It’s my canvas and I’m going Some people at school thought I was lying. to make sure it is the best I went back to school after about two or three weeks painting I’ve ever done. off after my lumbar puncture. I was crying because of the excruciating pain. I had a spinal headache and I felt dizzy all the time. I wanted to get back to school. I know that it sounds really weird but I felt isolated. When I got back to school it was a bit better but it was up and down for a while. A lot of people I thought were my friends turned out not my friends. One day in the playground I was backed into a corner by people I thought were friends and told I was a liar. I tried hard not to cry and then I walked off. That night I cried. I went to my mum and said “I’m being bullied. I can’t stand it anymore”. I spoke to everybody that I could at school and nothing was done. Year 10 and year 11 were very difficult for me because I had GCSEs and revision to do. I was very lonely for a very long time. I sat in my room for days on end and I just cried my eyes out. I don’t think people know how to articulate their emotions when they’ve been told that they have something that they can’t get rid of. I think people in schools need to be more aware of MS. It feels like more young people are being diagnosed. I think it needs to be discussed in the open like diabetes or autism or dyslexia. When I was younger I was very stubborn. I told people I didn’t need help. When I had a numb hand I sat there shaking, trying to write because I was determined not to let it get me down. I limped to school with a numb leg in the middle of winter and it took me 40 minutes. But I was so determined not to let it get me down. Because I was sick of crying, sick of being so upset all the time about something I couldn’t help.

Getting over the wall I needed to overcome it. When you’re running, you sometimes feel like you’ve hit a wall but you think “I’m near the end I can see the finish line!”. I just thought “I need to go over that wall, I need to get better, I need to figure something out for myself”. And eventually I did, because my teachers helped me. I had my Head of Year talk to me about strategies to cope with my MS. My art teacher became my mentor in a way. I could go to him anytime and say “This is getting me down” or “I can’t understand how to do this” and he’d help me to do it. So some teachers understood me. I went to see my neurologist and he told me about different medications. I wasn’t very happy about injecting so I went for Tecfidera. I felt it was right for me because it was a tablet which I could take easily. I started it in January 2015 and I have been taking it ever since. It works for me quite well. I take it twice a day. I find it’s better to take it after school because I get hot flushes. It might have been a placebo effect but I felt better about

myself because I thought this is going to be a new me. And since that day I have felt a lot better! Well, actually, a month after I started Tecfidera I had the biggest relapse I’ve ever had and was in the hospital for six days. But I haven’t had a relapse since then.

I don’t want people to struggle on their own Since I was first diagnosed I have felt there should have been more information aimed at people my age. A lot of what I found assumed you were at least in your 20s, if not older. I feel like it didn’t acknowledge that it could happen to you if you were a teenager. What would I say to a young person who’s just been diagnosed? I’d say it’s going to be okay! You may think at first it’s not, but eventually you will succeed. I’m not saying look at me and look at all the great things I’ve done. But I have overcome that wall. I have gone over it and I’ve become a better person. When I was 14 years old I was a negative person but now I’m a lot more positive about myself. I’m happier now because I got out of that little bubble. I see the world is a bigger place. It’s my canvas and I’m going to make sure it is the best painting I’ve ever done.

“I don’t want people to struggle on their own. By helping the MS Trust produce videos for young people you could make a huge difference for people like me.” The MS Trust is working hard to to make sure that no one has to take on MS alone. But we need your help. A donation of just £25 could help a young person contribute to a video that helps thousands of others. To find out how you could make a difference call us today on 01462 476700 or visit mstrust.org.uk/ young-people If you would like to share your story and help us raise awareness, please complete the survey on p23 or at mstrust.org.uk/young-people-survey

Open Door February 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

S TAY ACT I V E

Resistance training Today there is a greater awareness than ever of the difference staying active can make if you have MS. Not sure how to get started? Open Door is here to help. In every issue we look at different ways you can exercise. This month, we’re focussing on resistance training, following recent media coverage of a study showing the positive effects it can have on the brain. To learn more about what it actually is (and push images of weightlifters bench-pressing 100kg to the back of your mind) and how it could help people with MS, we chatted to physiotherapist Rachel Ross, who runs a resistance training class at Chilterns MS Centre Resistance training hit the headlines a few months ago with bold claims it can help slow down the progression of MS. Can you shed some light on the study? There was a systematic review in 2012 looking at resistance training and symptom management. One of the recommendations of this review was that we need to look more at longer-term studies and how exercise can help physiologically and on a pathological level, so what is actually happening to the disease. The recent study you are referring to was picked up by the media back in August. It showed that resistance training, also known as strength or weight training, not only has an impact on symptoms, but what’s going on in the disease process too. It made an argument that exercise might have a neuroprotective (protecting nerve cells from damage and degeneration) element to it, and maybe can reverse some of what is going on in MS itself. It was a longer term study, with a 24-week to 48-week follow up, and they used MRIs, measuring brain atrophy (shrinking of the brain caused by the loss of its cells). Everybody’s brain shrinks over a lifetime but in MS it shrinks slightly quicker. They monitored the brain over time, and found a reduction in brain atrophy, so it wasn’t degenerating so quickly. The researchers also looked at lesion size and they could see that lesions started to shrink a little bit at 24 weeks. They also looked at cortical (which is the other layer of the cerebrum - the largest

Rachel leading a resistance training class at Chilterns MS Centre

part of the brain) thickness, and found in some areas of the brain it enlarged. They can’t yet link that to brain function, that’s the big jump science needs to make, but the results of “We can now say this study are positive. But remember that when the media exercise is absolutely picks up on a story like this, headlines can the right thing to be doing. be a little misleading. The study was only There’s also evidence to show looking at people with an EDSS score of it can improve mood and 0-2, very early stages of the disease, and the study only had 35 participants.The cognition...” researchers themselves have said it is very much a pilot study and there’s lots more that still needs to be done in this area. You mentioned a review into symptom management. How can resistance training help with MS symptoms? The systematic review in 2012 demonstrated some of the symptom management it can help with. It showed that it can increase muscle mass and tone, so physically what was going on in the muscle improved. That also linked to electromyography (EMG) activity, so the actual impulses getting through to the muscles improved as well. There is some correlation with how strong your muscles are to how well you walk, but we need more evidence to prove that. There is also good evidence to show it can improve fatigue. Previously there was a concern that by exercising, people with MS might make

Open Door February 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

themselves more fatigued and cause more damage, but in more recent times, a lot of studies have proved the opposite. We can now say exercise is absolutely the right thing to be doing. There’s also evidence to show it can improve mood and cognition. Exercise classes also bring social interaction and camaraderie, which is really important too.

We’d like to thank everyone at the Chilterns MS Centre for their assistance with this article. For more information about the Chilterns MS Centre, see chilternsmscentre.org

You run resistance classes at the Chilterns MS Centre, what do they involve? The main idea behind this type of exercise is that you’re using some kind of resistance to target specific muscle groups - to load them. There are several different ways that you can do this. You could use free weights as an option, for example, using a dumbbell. That can be great as you can use them through the full range of your body’s movement, and you’re having to use your stabilising muscles at the same time, so it is quite a functional way of training. Another way of increasing resistance in your workouts is using the Thera-bands, which are bits of stretchy material. The great thing about this piece of kit is that it’s quite versatile; you can use it in a range of different movements and positions. For example, you could wrap the band under your feet, and then pull up on it as you perform bicep curls. The other way you may have seen resistance training used is in gyms, equipment like the cable row, pull-up bar, or leg-press. You sit or stand in position, there’s usually a diagram there to show you how to do the exercise, and it’s targeting a specific muscle group. You could also use body weight resistance, which means using your own body weight in different functional postures. You could try medicine balls, which are weighted balls you can use in quite a fun and functional way, or perhaps suspension training, which uses ropes and flexible cords. How could someone with limited mobility use resistance training? Let’s say you’re in a wheelchair, your hand and arm function is massively important. We use our arms more than we use our legs sometimes and physios really need to make sure they target arm function. Some of the exercises we do in the class certainly can be adapted to do in your chair. For example, free weights and bands, they are really versatile as you can move in any direction and load as much or as little as you like. What would be your advice to someone who wants to try resistance exercise but is a little apprehensive? Sign up to a class at a one of the many MS centres across the country, as the physios will be able to give you the support you need. I’d also say start slowly, listen to your body and do it at a level you’re comfortable with.

“I feel much more confident and solid” We asked people with MS to share their experiences of resistance training. My left side is considerably weaker than my right, particularly my leg, so for me it’s all about building strength on my left. So I use machines, body weight, or dumbbells to strengthen that side. I use heavier weights on my left side to build it up, and that really helps with stability and balance. I’ve found that when I’m walking around I feel much more confident and solid. Diana I’ve had relapsing remitting MS since 2014 and last year I began with some light resistance training alongside cardio. I immediately fell in love with this type of exercise and found that I have more and more energy. I have been buying heavier weights and now can deadlift 30kg. This might not sound like much but with a starting point of 3kg, with MS, and as a skinny woman, I’m so proud of how far I’ve come, the muscles I’ve developed and how this has improved my everyday life. I feel much more positive since exercising regularly, and my body feels strong and capable. I no longer need afternoon naps after work, which I always did since having MS. I now get home and do a workout instead! Rebecca I do body pump and spin and try and get weight training in at least 2 times a week. I had a relapse just recently where my right arm and leg wouldn’t To find out more work properly, it lasted 10 days and I feel about staying active that if I hadn’t built visit mstrust.org.uk/ up some muscle exercise and kept fit, the To find your nearest therapy relapse could have been a lot worse centre visit and lasted longer. mstrust.org.uk/ Charlotte

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Open Door February 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

FOCU S O N

Mindfulness and MS More and more people are extolling the virtues of mindfulness for dealing with the stresses and strains of everyday life, and some people believe it can be particularly useful for people dealing with long term conditions such as MS. But what exactly is mindfulness, and how you can you start trying it out? Justin Standfield, who was diagnosed with MS in 2015, explains how mindfulness helps him These days – possibly more than ever before – we can easily become so caught up with getting things done that we fail to just ‘be’ in the present moment. It doesn’t seem to matter whether we are working, at home, studying or travelling, alone or with others – so many of us are missing the beauty of life and we probably don’t realise how quickly it’s passing us by. Mindfulness is a response to this phenomenon and it’s based on an ancient practice of encouraging awareness, clarity and acceptance of the present moment. My encounter with mindfulness began nearly 20 years ago, long before I was diagnosed with MS; I first learnt how to ‘do’ mindfulness meditation in Thailand as part of a short introductory retreat in Bangkok. Like many people, I’ve been a sporadic mindfulness practitioner over the years – I’ve had times when I’ve been totally committed to having a regular mindfulness practice, but on occasions I’ve also found that it has slipped lower on my life’s list of priorities.

Mindfulness isn’t pink and fluffy Since my MS diagnosis in 2015, I’ve returned to it with a renewed commitment and have undertaken mindfulness teacher training so that I can share it with others. The mindfulness I practise and teach is a completely secular, non-spiritual approach that fuses together key elements from the well-known Mindfulness Based Stress Reduction (MBSR) and Mindfulness Based Cognitive Therapy (MBCT) courses. I’ll admit, the way that some people package up mindfulness comes across as a bit esoteric and

somewhat “pink and fluffy”, so here’s an everyday definition of mindfulness that might work for you – it’s:

a proven method of observing our thoughts, feelings and perceptions in a more helpful way. I’ve used the word ‘proven’ deliberately because there’s a growing body of research on mindfulness meditation and the benefits for people with MS are wide-ranging, particularly around symptoms such as fatigue, depression, anxiety and stress/distress.

Dealing with pain and managing worries

Using meditation helps me to stop physically bracing myself against the MS hug

For me, it all starts with intention. Your intention is what you hope to get from practising mindfulness – for example, you may want stress reduction, pain or sensation management, greater emotional balance or something else. The strength of your intention helps to motivate you to practise mindfulness on a daily basis and shapes the quality of your mindful awareness. My personal intention regarding mindfulness is twofold. Firstly, I use mindfulness to have an altered (dare I say better?!) experience of the pain associated with having the MS hug; most of my lesions are in my spinal cord so this symptom is one of my most troubling. Secondly, I want to have a more healthy relationship with my own thoughts about having MS – I suppose you could say I’d like to get my worries into perspective at times.

Open Door February 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

In terms of the MS hug symptoms, the main mindfulness technique I use is something called the Body Scan meditation. I know, it’s an ironic title given that anyone with MS will have been through an MRI scanner at some point! The Body Scan can be done sitting in a chair or lying down and it involves moving through your body (in your mind’s eye) and focussing on the experience in each area. It sounds counter-intuitive to focus on our body if we’re in pain, because normally what we tend to do is attempt to push away pain or deny it, or perhaps focus on it almost obsessively, hoping that in this way we will somehow control it or defeat it. The point of the Body Scan is to develop an attitude of noticing our current experience without automatically being compelled to react to it – it requires an attitude of acceptance of ‘what is’, which can be hard at times. It’s important to note that this acceptance is not the same as resignation. Acceptance doesn’t mean ‘giving in’ at all. I’ve noticed that using the Body Scan meditation helps me to stop physically bracing myself against the MS hug and therefore this reduces some of the sensation.

A new way of seeing yourself One of the most popular mindfulness meditations is mindfulness of breath. This involves focussing on your breathing and can be done in any position at all – the good thing about it is that you can even do it in public and nobody knows you’re doing it! I’ve found this to be a regular ‘go-to’ mindfulness practice that I use at times when I need to calm down my thoughts a bit or gain some psychological balance amongst the occasional worrying about the future with MS. I think it’s important that one of the underpinning attitudes of being more mindful is that of non-striving, which is sometimes described as “trying less and being more”; this notion of acceptance can be a useful message for anyone with MS. This disease brings about some inevitable changes to how we live our lives, how we work, how we parent and so on. This particular aspect of mindfulness can help us to reclaim our lives by responding to the here-and-now present moment. As Jon Kabat-Zinn puts it: “[Meditation] has no goal other than for you to be yourself. The irony is that you already are. This sounds paradoxical and a little crazy. Yet this paradox and craziness may be pointing you toward a new way of seeing yourself, one in which you are trying less and being more.” Justin is Managing Director at Incendo, a personal and professional development consultancy that offers a range of mindfulness courses for organisations. Find out more at incendo-uk.com

Mindfulness for beginners: three-step breathing space

Benedict Hoff is a mindfulness instructor with Breathworks, who run a wide range of mindfulness courses, including a number for people living with long-term conditions This is a great practice if you’re feeling a bit frazzled or you’re kind of rushing to get to the end of that to-do list and you realise that your body’s tired or becoming rundown. You can do this sitting down, standing up or even lying down. If you’re sitting down, find a straightback chair if possible. Leave your legs uncrossed with your feet on the floor. You can close your eyes if you wish. Just rest the palm of your hands in your lap. Shoulders soft, head tilted very slightly forward... 1. The first stage is just becoming aware of what’s going on for you right now. What thoughts are going through your mind, what feelings and sensations are in your body. Hold yourself in a broad lens of awareness. Tune into your experience right now. 2. The second stage is called gathering. We’re moving from this broad lens of awareness to a close-up lens of awareness, gathering our attention around the sensation of our breath. Following our breath in through the nostrils, all the way down into the lungs and following its journey back out again. If you’ve noticed that you’re feeling any pain or discomfort or fatigue, you can imagine that you’re breathing in a very healing compassionate breath for yourself, just cradling your body in a very soft tender breath. Each in breath, each out breath... 3. Then the third stage is expanding, so we’re expanding our attention outwards from around the breath to take in the sensations of our body as a whole. Re-engaging with those points of contact: the feet against the floor, the back against the back of the chair, the feeling of our hands resting in our laps. Taking in any sounds that you can hear around you: sounds near, sounds far... And then open your eyes and continue the rest of your day making the intention For more guided to bring this quality of awareness to exercises plus an what you’re going to be doing next.

interview with Ben visit mstrust.org.uk/ mindfulness

Find out more the mindfulness courses from Breathworks at breathworksmindfulness.org.uk

Open Door February 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

A S K T H E E X P E RTS

Sex and MS Research suggests that sexual problems affect more than half of people with MS, but starting a conversation about them with a health professional can often feel daunting. Lesley Catterall and Denise Middleton, two MS specialists with an interest in the sexual problems associated with MS, answer your questions

Why do people with MS experience sexual difficulties?

Denise: People with MS experience sexual difficulties for a combination of reasons. We classify these as primary, secondary and tertiary. So the primary causes are a direct result of the MS in the brain and spinal cord, and if there are lesions in the frontal and temporal lobes then that can affect sexual response and people’s intimate feelings. Secondary causes are non-sexual MS symptoms that also impact on the sexual response and sexual activity, such as spasticity, pain, fatigue. Tertiary causes are caused by emotional, psychological, social and environmental issues. There’s a combination of all those things that all muddle together and make it quite complicated in looking at what the actual definitive cause is. It’s not just one cause, there’s lots of things that interplay together.

What can I do to improve my sex drive? It’s plummeted since I was diagnosed

Lesley: A lack of libido or sexual desire is very common for men and women. Difficulties with arousal and libido are common, but the sensory and perceptual pathways and the physical ability to have sex isn’t always affected just because the desire has gone. Pleasure and sexual intimacy can be relearned with behavioural conditioning. It’s important that people discuss how they’re feeling with their partners and manage their expectations. Not every sexual encounter is always a positive one but with practise you can improve your desire and libido. We always encourage people to not be too hard on themselves, to encourage patience and to reinforce any positive experiences they might have had and build on those. Being open minded about trying new things is always a good thing!

Not every sexual encounter is always a positive one but with practise you can improve your desire and libido

Open Door February 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

Lesley Catterall and Denise Middleton both work for the Central and North West London NHS Foundation Trust. Lesley is an MS specialist nurse covering Milton Keynes and has worked in this role for just over six years. Denise is an MS clinical specialist in Milton Keynes and is an occupational therapist by profession. She’s been supporting people with MS for 18 years.

MS has left me with some numbness in my genital area making it difficult for me to become aroused and reach orgasm. Do you have any tips to help with this?

Lesley: Sometimes people can get bogged down worrying about achieving an orgasm. It’s rare in general for partners to achieve an orgasm at the same time. Intimacy is just as important; things like touching, holding hands, spending time together. To help arousal you might plan a date night, setting the scene with candles, soft music, mood lighting, and using fragrance massage oils. There is a technique called body mapping which can help with finding out which parts of the body become more sensitive during intimacy. When you have MS those areas might change because of pain or spasticity so it’s good to communicate with your partner and just explore each other’s bodies and find out which bits help you get turned on. There are lots of websites you can look at for sex toys now, and there are also intimate massagers which

have been designed specifically to help women who have difficulties with sensation. Masturbation can help because you can feel more in control and decide on the rhythm and speed, and that can help in achieving an orgasm. Other options are to try different positions, to try oral or anal sex, and sometimes fantasy can help to increase that arousal. We always refer our patients to the MS Trust booklets for men and women about managing sexual problems. There’s lots of tips in there about how to help those to achieve an orgasm. There’s Embarrassed about also websites shopping for sex toys? there and other Don’t be! Websites like Ann resources where you can Summers and Love Honey have a buy products range of products which can be that are a safe ordered online and delivered to option.

you in discreet packaging.

How can I bring up the subject of sexual problems with my health professional?

Lesley: Don’t be embarrassed. Sexual difficulties can be part of the MS process. Sex is just as important, if not more important, than some of your other MS symptoms. As MS nurses we’re used to discussing sexual difficulties with our patients and it may well be that your MS nurse will ask you during your review appointment. If not you could take a list of problems you’re experiencing and include sexual difficulties on that list. Or you could open the conversation by saying “I’ve been experiencing sexual difficulties, is this common for people with MS?”. Just opening up the conversation

helps. And by talking you can alleviate some of the problems. While you’re in your consultation with your MS nurse, you can refer back to the MS Trust booklets, you can say that you’ve seen them and it’s something you want to discuss. I think the key is to not be embarrassed and to realise that sex is important. If you don’t feel comfortable speaking to a health professional, you can contact the MS Trust enquiry service and discuss your concerns confidentially with a member of the team. Call 0800 032 3839 or email infoteam@mstrust.org.uk

I’m single and feel as though no one will be attracted to me now that I have MS. How can I build up my self-esteem so I have the confidence to start dating again?

Lesley: When you’re diagnosed with MS it can really knock your self-esteem and confidence. The important thing to remember is that even though you’ve been diagnosed with MS, it doesn’t change who you are as a person and you’ve still got lots of positive qualities. You might find it helpful to write these qualities down to try and reinforce them. You could also ask your friends and family whether they could list your positive qualities and then you could reread those to help build your selfesteem. It’s also important to focus on the things you enjoy and maybe even try something new, like joining a new club. Sometimes when you’re feeling a little bit low or when your self-esteem and confidence have been knocked, you might become more withdrawn and not want to go out as much. Try not to let that happen. Go out, meet people and enjoy the things that you always did enjoy doing. Practise smiling and engaging with people and hopefully your confidence will be restored.

For more discussion of sexual issues and MS, and to find out about our free books for men and women, visit mstrust.org.uk/ sex

Open Door February 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

GE T IN VOLV E D

Are you ready to Be Bold in Blue in 2018? This MS Awareness Week (23-29 April 2018) you can help to make sure no one has to manage MS alone by Being Bold in Blue! Go blue your way, be bold and stand up for people with MS by raising awareness and funds. Being Bold in Blue can be as simple as organising a blue cake sale, encouraging people to dress up in blue for a donation or getting sponsored to wear blue nail polish for the week (popular with the men!). You could even take on a really bold fundraising challenge like dying your hair blue and then shaving it all off! Since we launched Be Bold in Blue in 2011 our supporters have raised over £105,000 to help the 100,000 people living with MS in the UK by providing information people can trust and supporting the MS health professionals they need.

Julie’s 50th celebrations “I decided that I would like to raise funds and awareness for all the great work that the MS Trust does. As my 50th birthday coincided with MS Awareness Week it just seemed very fitting to take part in Be Bold in Blue. I started telling my family and friends what I wanted to do and the support was amazing. Two coffee mornings were organised and my brother signed up for the British 10K run. With the support of the MS Trust’s fundraising team, it all went fantastically well, I can look back now and happily say that we achieved what we set out to do! We raised £1,349! What a great way to remember my 50th birthday year!”

Fundraising at school Deon & London raised over £3,000 by fundraising at school and taking part in the MS Circuit Challenge. London said, “I wanted to help people with MS and to get more people involved with raising money. It made me really happy because of what we did at the Be Bold in Blue events and it helped my friends understand why mum uses a wheelchair.” Deon said, “I wanted to help spread awareness and help people to understand MS in more detail whilst raising money for the MS Trust. I also enjoy participating in charity events as a family because it is fun and brings everyone together.”

Jill’s Brownie pack A member of our Brownie pack has been affected by MS so we thought we would fundraise by collecting 20p coins in Smarties tubes over the Easter holidays. We then held a ‘Be Bold in Blue’ meeting, we decorated blue cakes and played games with a blue theme and raised £94.”

The more people who know about Be Bold in Blue, the more we can raise to help people with MS, so please spread the word. Perhaps you could ask friends, family or colleagues if they can take part, ask your kids’ school to sign up or put posters up in your local area. MS Awareness Week is our chance to raise the profile of MS and to show everyone what the MS Trust does to help people affected by MS. So let’s all Be Bold in Blue and make 2018 the boldest and bluest yet! Get your free fundraising guide today by visiting mstrust.org.uk/beboldinblue. Our fundraising team will be in contact with you and support you every step of the way.

Open Door February 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

Get involved There are lots of ways you can get involved and support our work helping everyone affected by MS. Here are just a few ideas. To find out more visit mstrust.org.uk/fundraising Jump in June!

At the MS Trust we are always looking for different fundraising ideas we can offer you. Miles for MS is our new campaign for 2018 where you set your own distance challenge to complete during May and raise sponsorship to support people living with MS. Whether it is half a mile or 100 miles, you pick how far you want to go and do it your way! Walk, wheel, arm cycle, scooter, swim, run… it’s up to you. Complete the distance in your own time over the month, track your progress on your personalised fundraising page and raise vital funds. You don’t have to do it alone either, why not get your office, gym class or family involved too? You might decide that you want to ride 20 miles on an exercise bike or arm bike during May, and break it down to half a mile each session. Or maybe you want to run a marathon (26 miles) over the month, but do it by running shorter distances a few times each week. Perhaps your personal challenge would be to walk to the post box and back, and you could build up to it over the course of the month. Sign up for just £15 and you will receive an MS Trust T-shirt, your own personalised online page where you can track your progress and raise funds, and a certificate when you finish. If you raise over £125, you’ll also get a Miles for MS medal to wear with pride. We are here to support your fundraising and if you don’t know where to start, give us a call and we’d love to talk with you about some of the different ways you could get involved. Visit mstrust.org.uk/miles to sign up today or call 01462 476707 to find out more.

If your new year’s resolution was to have more fun, be more adventurous or try new things then get yourself booked in for an exhilarating skydive this June! mstrust.org.uk/jumpinjune

London to Amsterdam Cycle Ride Last chance to join our team of cyclists supporting MS Trust as the Official Charity Partner of the London to Amsterdam ride from 6-10 June. Booking closes in March. If you miss it, there’s another taking place from 29 August–2 September 2018 mstrust.org.uk/L2A

British 10K 2018 Join our team on 15 July for this popular run through central London. If you’re new to running there’s plenty of time to train and we’ll give you lots of support along the way. mstrust.org.uk/british10k

Climb Ben Nevis Join our new trek from 21–23 September 2018 and tackle the highest mountain in the UK! Witness some of Scotland’s most spectacular scenery, challenge yourself and raise vital funds. mstrust.org.uk/bennevis

My Garden Party Hold a tea party, open your garden to neighbours and friends, organise a plant or cake sale. Visit our website for a pack of great ideas and start planning your perfect summer garden party. mstrust.org.uk/mygarden

To find out more about supporting the work of the MS Trust call 01462 476707 or visit mstrust.org.uk/fundraising

Open Door February 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

1 5 M IN U T E S WITH M S TRUST FUN DRAISER

Debbie Worthington When Debbie’s husband Joe took part in a half marathon in Malta, it inspired her to give running a try for herself. Since then she’s really got the bug for running and is now inspiring others to get involved with some fantastic fundraising challenges. How do you approach your training? Gently! I ran my first couple of kilometres along the promenade in Malta in February 2013 when we were out there for Joe to complete the Malta half marathon. I was shattered. My muscles didn’t know what had hit them and climbing stairs was agony for days! When we got home I started going out for increasingly longer runs on my own, with friends and Joe. When did you decide to support the MS Trust? I was waiting for my husband Joe to finish the Great North Run in 2014 and I had a mooch around the Charity Village. I was overwhelmed by the warmth of the team there from the MS Trust, as well as being a bit embarrassed by my ignorance around what the Trust had already done for me and my family! When were you diagnosed with MS? I was 25 when I visited the doctor with tingling in my left hand and foot and blurred vision, after previously being quite medically uninteresting! I had a classic combination of symptoms which lead to a swift diagnosis. That was nearly 13 years ago. I didn’t realise at the time that the literature I received, and the training my MS nurse had been given, was down to the MS Trust. How has your MS affected your running? I wasn’t a runner before my diagnosis, and although I’d kept up with yoga and swimming, I’d become very wary of doing anything that might tire me out or spark a relapse; my MS has been stable, so in my head I was doing the right thing. I’d been following a healthy, lowsaturated-fat diet, which boosted my energy levels and made me feel more in control, so I started running with a goal of completing my first parkrun. Your first big fundraising challenge was the Worthington 500K, what did that involve? 2015 marked 10 years since my diagnosis. We’d both joined the MS Trust Great North Run team, so we decided to see how we could raise as much money and awareness as possible. What started out as a modest goal of raising £1,000, soon became the outrageous target of £10,000! I was really enjoying taking part in races, so we entered loads with the aim of completing 500km in races that year.

How have family and friends supported you? The support from family and friends was, and continues to be incredible! Coming out at work was probably the hardest part, as my MS had always been on a needto-know basis, but the support I received from my employers was fantastic too. The totally unexpected part of the challenge was the number of people that wanted to do something to help us and fulfil their own personal challenges along the way. The high point was 20 of us taking part in the Leeds 10k on my birthday this remains my sister’s first and last 10k! Can you tell us about your latest challenge, the Summer Streak? This was another of my daft little ideas that suddenly became big! After getting over a few injuries, I realised that I missed the challenge element to my running, so decided to try a running streak. I aimed to run at least a mile a day through July and August, and a handful of friends thought that it sounded like a good idea too. By the time August came along, our group of Streakers had doubled and many are still going strong! What’s your experience of fundraising been like? We’ve found the key to successful fundraising is being able to give donors something for their money; whether it’s the opportunity to challenge themselves, attend a great event or buy a handmade item such as the Ackworth Road Runners’ bobble hats! Our current total stands at £18,500 and we hope to take that over £20,000 next year when we try our hand at endurance running and my first marathon. What would you say to someone who was thinking about taking on a challenge? The Worthington 500k amazed us all; I still can’t believe what we achieved and the lasting effects of the challenge. Everyone that got involved got something out of it personally; it strengthened friendships and created a whole host of new ones. My advice to anyone taking on a challenge is to think big and share it; you’ve no idea what you can achieve unless you try and you’ll be blown away by the support you receive along the way. Go for it!

Open Door February 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk

Find out more about the MS Trust running events at mstrust.org.uk/ running

We want to understand more about how MS affects young people and we need your help! Did you experience MS symptoms as a young person? Is there a young person in your family who is indirectly affected by your MS? Please share your experience and help us make sure no one has to take on MS alone. If you are able to, please help us by completing this survey online at mstrust.org.uk/young-people-survey

Q1: Did you experience MS symptoms as a young person? (If not, go to Q2 overleaf) How old are you now? 0-13

14-20

21-30

31-40

41-50

50+

Looking back, when do you think you first experienced a symptom that might have been MS? 0-7

8-12

13-16

17-20

21-30

30+

When you experienced this symptom, did you look for information about what it could be? No

Yes â&#x20AC;&#x201C; I Googled

Yes, I looked at NHS info

Yes â&#x20AC;&#x201C; I spoke to my GP

Tell us more

How useful was any info you found? It scared me

It reassured me

It was useful

It confused me

Tell us more

How old were you when you were finally diagnosed with MS? 0-7

8-12

13-16

17-20

21-30

30+

Were you given any information about MS when you were diagnosed? No

Books, leaflets

Directed to websites

Directed to local support group

Tell us more

If yes, how useful did you find it Very useful

Slightly useful

Not useful

Confusing

Scary

Tell us more

What kind of support do you wish you had received? Books/leaflets written specifically for my people my age

Interactive online info

Talking to others affected by MS

Videos

Tell us more

Please rank your biggest challenges after being diagnosed (1= most challenging, 8 = least) Telling friends

Telling family

Dealing with symptoms

Telling others

Understanding MS itself

Thinking about treatment

Tell us more

Please complete Part 3 overleaf to get involved!

Worrying about future

Living a healthy lifestyle

Q2: Do you have a family member or friend with MS? How old are you? 0-13

14-20

21-30

31-40

41-50

50+

Grandchild

Sibling

Friend

What relation is the person with MS to you? Parent

Child

Grandparent

Other. Tell us more: How did you feel when this person was diagnosed with MS? (tick as many as apply) Shocked

Scared

Confused

Powerless

Determined

Other

Tell us more

Did you look for info to help you understand more or to help? If so, where (tick as many as apply) Library

Bookshop

Google

YouTube

Social media

NHS website

MS charity

Person with MS

Other

Online forum

Were these useful? Tell us more

Is there anything you think might have helped you more? Books/leaflets written specifically for my people my age

Interactive online info

Talking to others my age with MS

Videos

Tell us more

Please rank your biggest challenges in supporting your family member/friend (1= most challenging, 5 = least) Understanding MS

Talking to them

Understanding their treatment options

Understanding symptoms

Knowing how to be helpful

Tell us more

Q3: Would you share your story and help raise awareness?

We’re launching our new resource for young people at the end of April, but we need your help to spread the word. If you’d like to get involved, fill in your details and we’ll be in touch with more information First name

Surname

Email address

Phone number

I’d be happy to share my story in Local media

National media

Blog

Radio

Video

Please return your completed form to: Young people & MS survey, MS Trust, Spirella Building, Bridge Road, Letchworth Garden City SG6 4ET By providing us with your email address, you consent to us sending you emails related about this project. You may unsubscribe at any time. Read our Privacy Policy at mstrust.org.uk/privacy