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Open Door Quarterly newsletter of the MS Trust

May 2018

Making a difference How our Advanced MS Champions Programme could help families caring for a loved one with MS

Also in this issue 15 minutes with YouTuber Isobel Thomas

“Wheelchair basketball changed my life”

Why we should be ‘thinking hand’

Ask an expert: bowel and bladder problems in MS


Welcome to the May issue of Open Door Since I started at the MS Trust back in December, I’ve been continually inspired by the passion and dedication of every single one of our supporters. One challenge that needs an awful lot of dedication is the London Marathon. To run 26.2 miles is an incredible feat, so a huge well done to our amazing 2018 team. The money you’ve raised will make such a difference to people with MS. Supporting our work doesn’t have to mean running a marathon or jumping out of a plane (find out how you can sign up to our Jump in June campaign on page 20!). There are loads of fun (and not quite so daunting!)

ways you can get involved. Take our Be Bold in Blue campaign, which took place during MS Awareness Week last month. It was brilliant to see all the creative ways you were bold in blue for the MS Trust! I’ll be embarking on my own challenge for people with MS in June. I am taking part in the London to Amsterdam cycle ride and I’m really excited to hit the road and meet some of our wonderful supporters. Open Door will However you decide to support our work, please always be free to our know that you’re helping us to transform lives for readers, but it costs us £2 people with MS, their friends and families. Thanks to produce and post each for your support. issue to you. If you’d like to donate to David Martin, Chief Executive, MS Trust cover these costs text OPEN44 £2 to 70070

How we’ve been working hard for people with MS since our last issue Helping young people get to grips with MS In MS Awareness Week we were delighted to launch MSTV, our new YouTube channel for young people affected by MS. Featuring fun, engaging and informative videos on a range of different topics everything from symptoms to how MS makes you feel our hope is that MSTV will ensure no young person ever has to face MS alone. You can subscribe to the channel at mstrust.org.uk/mstv. As MSTV is a new project for the MS Trust, we’d love to hear your feedback. Get in touch at opendoor@mstrust.org.uk to tell us what you think.

Training your MS nurses Did you know that the MS Trust has provided training for every new MS specialist nurse in the UK since 2000? We believe this education and support is absolutely crucial in helping MS specialists make even more of a difference to you. Back in March, we welcomed the latest batch of MS nurses to our week-long education course, including Claire and Julie from Lanarkshire and Sally from Bradford, who are all nurses we’ve helped recruit and fund as part our pioneering Specialist Nurse Programme. Find out more about why we’re funding and training MS nurses and how you can get involved at mstrust.org.uk/nurses.

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 May 2018 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk


Contents 4

News Mavenclad approved for Scotland, promising results in international stem cell study, plus an update on how we’re protecting your data

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New research on whether meditation can improve wellbeing, if siponimod can slow down progression in SPMS and links between stigma and depression

Meeting some of our fantastic fundraisers at the 2018 London Marathon Our amazing supporters never fail to inspire us with the enthusiasm, dedication and passion they put into every single fundraising challenge. And challenges don’t get much bigger than the London Marathon, which this year took place on April 22. Our team of 55 runners raised over £100,000 to help us support people with MS, and we’d like to say a big thank you to every single one of them – we hope the feeling as you crossed the finish line made the blood, sweat and tears worth it! To find out how you could take on a running challenge for the MS Trust, see mstrust.org.uk/running.

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Life with MS MS Trust supporter Lucy tells us why she was inspired to take on a running challenge

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Caring for a loved one We speak to Lisa and Tony Tanner, who care for Lisa’s mum Georgetta, about the ups and downs of being a carer

Raising awareness of MS Thank you to everyone who was Bold in Blue for the MS Trust during MS Awareness Week. It was the boldest and bluest year EVER, with blue cake sales, blue hair, blue fancy dress, and all manner of other brilliantly blue fundraising events! Thanks to your support, we can continue our work to ensure no one has to face MS alone.

Research update

14 Wheelchair basketball

How wheelchair basketball has helped Jerry with his MS symptoms

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Focus on: #ThinkHand Professor Gavin Giovannoni on why we should all be ‘thinking hand’

18 Helping you manage fatigue Our information team has been busy updating one of our most popular books, Living with fatigue. As well as a range of information on managing the symptom, the book has been updated to include more about the types of exercise recommended for people experiencing fatigue, plus we’ve added some tips for keeping up with regular exercise in the long term. The revised edition was published in April and can be ordered using the form on the back page or through our website at mstrust. org.uk/shop.

Ask the expert: bowel and bladder problems in MS MS specialist nurse Noreen Barker answers your questions

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Get involved Find out about why one supporter wanted to take a leap for the MS Trust, plus all the latest opportunities to raise funds to support our work

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15 minutes with MS YouTuber Isobel Isobel tells us why she wanted to vlog about her MS journey and support others living with MS

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

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News NICE says no to ocrelizumab for RRMS

Withdrawal of Zinbryta following serious side effects

In a draft decision published at the start of April, NICE said that it would not approve ocrelizumab for relapsing MS on the grounds that the cost of the drug is “too high to be considered an acceptable use of NHS resources”.

Zinbryta (daclizumab) was withdrawn worldwide as a treatment for people with relapsing remitting MS in March. This followed12 cases of serious brain inflammation (encephalitis and meningoencephalitis) in people taking the drug. The European Medicines Agency (EMA) advises that: • anyone currently taking Zinbryta should not stop without first talking to their neurologist or MS nurse • doctors should review anyone currently taking Zinbryta and discuss switching to an alternative treatment as soon as possible • no one should begin taking Zinbryta • anyone who has questions should talk to their neurologist or MS nurse.

The decision was open to a public consultation that ran until 25 April. NICE’s appraisal committee is meeting in May to consider the results of the consultation and to make a final decision, which is expected to be published in July. The MS Trust, which made a submission supporting the approval of ocrelizumab, is disappointed by the draft decision and has responded to the public consultation. We believe choices about the appropriate care of MS should be a decision for the person with MS and their neurologist and be based on access to the full range of licensed treatments. NICE’s appraisal of ocrelizumab for primary progressive MS is a separate process with a decision expected later in 2018 or early 2019.

NICE decides whether new drugs should be available on the NHS in England. Wales and Northern Ireland generally accept NICE guidance. Availability in Scotland is decided by the Scottish Medicines Consortium (SMC), which is yet to assess ocrelizumab. Ocrelizumab has been developed as a treatment for both relapsing remitting and primary progressive MS. It is taken as an intravenous infusion every six months. In clinical trials, ocrelizumab reduced relapse rates by approximately 50% compared to beta interferon. In primary progressive MS, fewer people taking ocrelizumab showed signs of progression than a control group taking placebo.

Collection to take place at a Goodwood Breakfast Club Although the MS Circuit Challenge at Goodwood Motor Circuit will not be taking place this year, we are pleased to announce that the MS Trust has been invited along to collect during the famous Goodwood Breakfast Club on Sunday 6 May. This is such a great opportunity for us to raise the profile of MS and the MS Trust and, more importantly, to raise money to help people living with MS today. We are in talks with Goodwood to bring back the MS Circuit Challenge for next year.

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Find out more at mstrust.org.uk/ goodwood

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


Mavenclad approved for Scotland

Stem cell study for people with highly active relapsing MS shows promising results Preliminary data from an international stem cell study for people with highly active relapsing multiple sclerosis has reported that those having stem cell treatment had fewer relapses and improved disability levels. 110 people with highly active relapsing MS (two or more relapses in the previous year whilst taking a disease modifying drug) took part in the international MIST trial. Half of the participants had autologous haematopoietic stem cell transplantation (AHSCT) and the other half took a disease modifying drug (DMD). Anyone taking a DMD who had an increase of at least one EDSS point for six months (defined as treatment failure) was eligible to switch to AHSCT. In the first year of treatment, one relapse occurred in the AHSCT group compared to 39 in the DMD group. Participants treated with AHSCT had an average improvement in disability of 1.1 EDSS points, while those taking DMDs had an average deterioration of 0.6 points. The study has not yet finished, and participants are due to be followed up for five years after treatment. So far, on average participants have been followed up for three years from starting treatment. Treatment failure was 6% (3 of 52) for AHSCT and 60% (30 of 50) for DMD. For the 30

DMD participants who switched to AHSCT, at one year after stem cell treatment, the average EDSS improved from 5.2 to 2.6. There were no deaths and no very serious side effects as a result of the AHSCT treatment. Jo Sopala, Director of Development at the MS Trust, commented: “These results suggest that AHSCT is an effective treatment for people with highly active relapsing MS. It is important to note that this is an interim analysis and we look forward to publication of the results at the end of the study. We know people with MS are eager to get access to AHSCT but it is not suitable for all and we advise people to visit our website for more information.”

Read more about stem cell therapy at mstrust.org.uk/stemcells

The Scottish Medicines Consortium (SMC) has approved Mavenclad (cladribine) as a treatment for highly active relapsing multiple sclerosis. The SMC has recommended that Mavenclad can be prescribed by the NHS in Scotland if you have: • rapidly evolving severe relapsing remitting MS: at least two relapses in the previous year and MRI evidence of MS activity • relapsing remitting MS that has responded inadequately to treatment with another disease modifying drug: at least one relapse in previous year and MRI evidence of MS activity. In November last year, NICE approved Mavenclad for highly active relapsing MS in England and Wales. About Mavenclad Mavenclad is taken as a pill in two treatment courses, 12 months apart: Year one – In the first course, Mavenclad pills are taken for four or five days consecutively at the beginning of the first month and then four or five days consecutively at the beginning of the second month. Year two – The second course is taken 12 months later and follows the same pattern. In clinical trials no further treatment was required in years three and four. The studies found that Mavenclad reduced relapses by 58% compared to a placebo and also reduced the risk of disability progression. Side effects included a reduced white blood cell count (lymphopenia) and herpesvirus infections (shingles or cold sores). Find out more at mstrust.org. uk/a-z/mavenclad-cladribine

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

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How we’re protecting your details Laws on how your data is protected are changing and here at the MS Trust we’re committed to ensuring you feel confident that we’re looking after your data properly and communicating with you fairly. Thousands of people every year take on MS with us at the MS Trust in a number of ways. Some phone our enquiry service, others use our website, read Open Door or are helped by an MS nurse trained by us. Some donate to our appeals, leave us a gift in their wills, volunteer for us or raise money by baking cakes, running marathons or being Bold in Blue. Whatever your relationship with us we want you to feel valued and confident that the MS Trust is looking after your data properly and communicating with you fairly. The laws on how your data is protected are changing. From 25 May 2018 the new General Data Protection Regulations (GDPR) come into force. Whilst we’ve been making sure we meet these new rules, we also want to enable you to stay in touch with our work in ways that are relevant and important to you. To do that we’ve

updated our policies and procedures; have a read of our new privacy policy at mstrust.org.uk/privacy. As a regular recipient of Open Door, we’ll continue to send you this quarterly newsletter. And that goes for anything else you receive from us by post. If you don’t want us to contact you by post let us know and we’ll take you off our mailing list. You may also wish to stay in touch with us via email, and the laws here are changing too. We send out a range of emails covering the breadth of our work – including fundraising, information, research and news. Although we would previously have asked for your permission to send you emails, the new GDPR rules mean that we have to ask you every so often whether it is still okay to send them to you. Once the permission you gave us is more than five years old, then we’ll be in touch to check whether you still want

Good luck to our London to Amsterdam cyclists The MS Trust is very pleased to have been selected as the Official Charity Partner for Skyline’s London to Amsterdam cycle ride in June. We have a team of 34 cyclists getting ready to ride the 360 miles next month, including our very own CEO David Martin, and they’re all busy raising vital funds to help us continue to support people with MS. Thank you and best of luck to our team!

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

to receive these communications. If you don’t give us your permission, we’ll stop sending you emails. We hope that you will want to stay in touch with us, and hear about the work we do to support people affected by MS. We are always so inspired by what you do, and therefore hope you will continue to tell us what you’re up to and how MS is affecting you.

To update your communications preferences, visit mstrust.org.uk/ preferences


Your views

Lots of you share your views on issues affecting people with MS in the letters and emails you send us, your phone calls and on our social media channels. Here we focus on a couple of burning issues that have got many of you talking since our last issue. Join the conversation at facebook.com/mstrustuk twitter. com/mstrust or simply by giving us a call: 01462 476700

Weather woes Back in February the country went into meltdown (literally) following the ‘Beast from the East’. Some people with MS find that their symptoms get worse in cold temperatures, while others find that heat affects them. We asked you to share your experiences. . . “I’ve been functioning better in the winter while I’ve been pregnant. This past summer was excruciating. Hopefully it’ll be better. I haven’t experienced the winter while I was on Tecfidera.”

Walking aids ‘Will I end up in a wheelchair?’ is often one of the first questions people ask when they are diagnosed with MS. For most people, the answer is NO, but if your mobility is affected by MS, you may find that a wheelchair - or other walking aid – actually gives you the freedom to continue doing the things you love and overcome some of the barriers MS presents. Jerry Burnie, diagnosed in 2004, recently wrote a guest blog about his experiences of using a wheelchair and the positive difference it’s made to his life with MS. We posted the blog on social media, and many of you got in touch to share your own positive stories, which you can read below. “Getting my walking frame was one of the best things I did. Yes I can still walk but it’s really hard work and the walking frame relaxes my legs, gives a visible sign to others to give me time and space, and increases my mobility. To all those who resist walking aids or are afraid of them, don’t be, embrace the support and extra freedom they give. You don’t have to use them all the time f you don’t want to. It’s just there as an aid.” “In the end I had a choice – take to my sofa and never go anywhere or use a wheelchair and get on with life. I opted for the latter but it certainly wasn’t easy. Sadly, there are many people who can’t bring themselves to use a wheelchair

and miss out on the rest of their lives. As far as I am concerned, my wheelchair has become my legs but that doesn’t mean life is as it was before. Nothing like it.” “My motobility scooter has given me back my legs and some independence!” “I compete in dog agility and also have MS. I have been worried that if my symptoms get worse I may not be able to carry on with my hobby which is my social life too. A fellow competitor posted how she has competed on a mobility scooter and has won into nearly the top grade of our sport. What a positive post and such a boost. I am looking forward to carrying on whether on legs or wheels.”

“I have problems if it’s a cold windy day, 2C or less. I chill very quickly even with plenty of layers and everything shuts down, particularly legs and feet. Never really noticed cold before MS. Unfortunately on summer days if temperature 25C+, I over heat and have balance and other issues. Ho hum....it’s spring or autumn for me” “Cold is fine, just a few extra layers and some reusable heat packs if needed. Now summer I’m pretty much bed ridden. Need to become rich so I can pay someone to wheel around an air con unit.” “I found that my MS team didn’t warn me of this issue, either hot or cold weather. I spent a whole summer thinking my MS had deteriorated to later find out that it was temperature dependent issue.”

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

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Research update

Keep up to date with the latest MS research by signing up for our email mstrust.org.uk/keepintouch

Can siponimod slow down progression in SPMS? Promising topline results from a large secondary progressive MS (SPMS) clinical trial for siponimod were presented at scientific meetings in 2016. The results have recently been published in a peer-reviewed journal, giving us a better idea of the effectiveness and risks of this potential treatment. Authors Kappos, et al Title Siponimod versus placebo in secondary progressive multiple sclerosis (EXPAND): a double-blind, randomised, phase 3 study Journal Lancet 2018 Mar 22. [Epub ahead of print] Read the summary: tinyurl.com/y9jq6nsk

The study The main aim of the study was to see if siponimod could prevent an increase in disability, in other words maintain the current level of disability. The EXPAND trial recruited 1,651 people with SPMS at study centres around the world. On average, participants had been diagnosed with MS for approximately 17 years, and had had SPMS for about four years. They also had a disability score (EDSS) between 3.0 and 6.5, with just over half needing to use a stick for walking assistance. Participants took either siponimod (1,105) or placebo (546) tablets daily for up to three years. Disability level (EDSS score) was assessed every three months. Disability progression was confirmed if an increase in EDSS persisted for a further three months.

The results Researchers found that 32% of those taking placebo experienced a three month confirmed increase in disability during the study, compared to 26% of those taking 8

siponimod. This represents a 21% reduction in risk of progression for those taking siponimod. People with SPMS who were less disabled and younger were most likely to benefit. Siponimod was also more effective than placebo on other measures used in the study: • reduced risk of six month confirmed increase in disability • reduced loss of brain volume • reduced MRI-detected brain lesion volume There was no significant difference between the two groups in the time taken to walk 25 feet. Low white blood cell count, increased liver enzyme levels, slower heart rate when starting treatment, macular oedema (swelling in the back of the eye affecting vision), high blood pressure, shingles, and convulsions occurred more frequently with siponimod than with placebo.

What does it mean? The results suggest that siponimod could slow down the progression of SPMS. An accompanying editorial

expressed reservations about the relatively small improvement in disability progression and questioned whether it would be an effective treatment for SPMS. While the effect is modest, siponimod is the first treatment to report a positive result in a large scale clinical trial for SPMS. Participants are continuing to take siponimod for up to seven additional years in an extension to this study. The results from this follow-up study will give a better picture of how people respond to the treatment in the longer term.

More about siponimod The manufacturer of siponimod plans to apply for a European licence later this year. It will then be appraised for cost effectiveness as an NHS treatment. If these steps are successful siponimod could be To find out more about available on the NHS siponimod visit towards the end of mstrust.org.uk/siponimod 2019 at the earliest.

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


Stigma and depression in MS Stigma is the feeling of being seen as separate from and less than others. Several MS symptoms can make people feel apart, such as difficulty walking, speech problems, cognitive difficulties and visual problems. Previous research has shown that most people living with MS experience some stigma, but little is known about the psychological impact that this could have. This study investigated the association between levels of stigma and depression in people with MS.

Authors Cadden MH, et al Title Judgment hurts: The psychological consequences of experiencing stigma in multiple sclerosis Journal Soc Sci Med. 2018 Feb 2. {Epub ahead of print} > Read the summary: tinyurl.com/yal52vyt

The study Data were collected from 5,369 participants enrolled in the twice yearly survey conducted by the North American Research Committee on Multiple Sclerosis (NARCOMS). In 2013, participants were asked to complete two surveys, one measuring stigma and the other depression. One year later, participants were asked to complete the depression survey again. The stigma survey asked people to rate statements on a scale of 1 (not at all true) to 5 (very true). Statements tested participants’ experience of stigma (for example, “People are uncomfortable around someone with MS”) as well as sense of isolation due to stigma (for example, “Because of my MS, I feel left out of things”).

The results People experiencing greater levels of stigma reported more symptoms of depression and were more likely to be clinically depressed. This was true even after allowing for other factors that affect depression such as degree of disability caused by MS, gender or taking part in physical activity. Higher levels of stigma also predicted later depression, suggesting that for people living with MS, stigma may partly cause depression. People with greater psychosocial reserve

- that is, having a support network and a sense of belonging and control over their lives - were less likely to be depressed even if they experienced stigma.

What does it mean?

suggest that the association of stigma with MS goes beyond mild mood changes, as higher levels of stigma predicted a greater likelihood of being clinically depressed. Strong social bonds, making sure that people with MS are connected with family and friends, and a sense of independence create a psychological buffer that can help people become less vulnerable to stigma. Understanding the way stigma leads to depression would be helpful in developing strategies to minimise the adverse effect of stigma on health.

About half of people with MS will have depression during their lifetime, about three times higher than the general population. The causes of these high rates of depression in MS are not well understood. MS symptoms such as fatigue or pain, living with uncertainty, experiencing loss of opportunity and the social isolation that More about depression disability may bring can all Two simple questions have been devised to be factors for developing establish if you or someone you know is depressed: depression. • During the last month have you often been However, research has shown bothered by feeling down, depressed or hopeless? MS depression isn’t clearly • During the last month have you often been related to disability or having bothered by having little or no pleasure in doing lived with the condition for things? a long time and in fact may If the answer is yes be more common earlier in to either of these the disease. This study helps questions, it is identify stigma as an important important that you To find out more about contributor to depression. speak to your GP or depression visit People’s sense that they will MS specialist team as be set apart from others and mstrust.org.uk/depression it is not usual to feel treated negatively because low all the time. of their MS may contribute to depression in addition to any direct physical effects of the illness. What is more, the results Open Door May 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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Does meditation improve wellbeing? The psychological and social consequences of living with MS can have a significant effect on what is known as health-related quality of life, or a sense of wellbeing. This can result in an increased impact of MS symptoms such as pain and fatigue, leading to further negative effects on things like mood and your social life . This study investigated meditation as a means to encourage mindfulness in an effort to break this cycle. Author Cavalera C, et al. Title Online meditation training for people with multiple sclerosis: A randomized controlled trial Journal Mult Scler 2018 Feb 27. [Epub ahead of print] > Read the full study: tinyurl.com/yct9m7h3

The study Italian researchers allocated 139 people with MS to receive an online meditation course or an educational course combined with exercise. The meditation intervention consisted of eight weeks of an online mindfulness-based stress reduction course which the researchers developed themselves. The course included music meditations, discussions about symptom acceptance, video conferences with a qualified mindfulness trainer, and live sessions conducted through Skype. The educational intervention group took an online course consisting of eight weeks of informational videos and home exercises. The main measure of the study was quality of life. Secondary measures included anxiety, depression, sleep measurements, and fatigue. These outcomes were measured after eight weeks, and after six months.

The results The meditation course group reported higher quality of life and lower depression, anxiety and sleep problems at the end of the eight week course, compared to the education course group. However, 10

after six months, measures for the two groups were no longer significantly different, with both groups returning to pre-treatment levels. Dropout rates were similar in the two groups, with discontinuation largely due to lack of available time, either due to work or family commitments. Fatigue was not significantly reduced by either treatment, both at the end of the courses or six months later. Trainers reported technical problems such as slow internet connections for most sessions although this was not considered to be a major issue.

What does it mean? This study showed that an online meditation course can be an effective treatment to improve psychological wellbeing in the short term. Previous studies have also shown benefits of mindfulness-based therapies for people with MS but the design of these studies has been criticised, making it difficult to draw definitive conclusions. In this study, the researchers aimed to carry out a more rigorous evaluation by using a comparison group that was also receiving an

active treatment, rather than just basic medical care, and by carrying out a six month follow-up to see if the changes were maintained. The authors comment on the fact that improvements in wellbeing were not maintained over time, noting that mindfulnessbased stress reduction requires practice. A potential barrier for taking part in mindfulness-based interventions is the time commitment and the need to travel to a weekly group meeting. The researchers chose to develop and evaluate an online course to make it easier for people to take part.

More about mindfulness Mindfulness is a type of psychological therapy that can be used to manage some of the symptoms of MS. It involves learning to bring our full attention to our experience moment by moment in a kind and non-judgemental way so that we can be aware of what is really To find out more about happening in our bodies, our minds, our emotions mindfulness visit and our environment. mstrust.org.uk/ Meditation is one of the mindfulness techniques you can use to improve mindfulness.

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


Life with MS Many people with MS live by the motto ‘I have MS, but MS doesn’t have me’ and are determined the condition won’t define them. In our new column, Life with MS, we’ll be shining the spotlight on some incredible individuals who’ve been inspired to take on a new challenge following their MS diagnosis. First up is MS Trust supporter Lucy Pritchard. Following a shock diagnosis in 2015, Lucy decided to take on a remarkable running challenge to raise vital funds for the MS Trust and show that MS doesn’t have to mean the end of your world. This is her story.

When I was diagnosed with relapsing remitting MS in 2015 it was a complete surprise. I remember experiencing triple vision while I was training for the Great North Run, so my boyfriend had to come out running with me as I couldn’t tell how high the kerbs were! Then I lost the feeling in my left leg and started seeing bright lights in my eyes. It was after we’d been on holiday to the Lakes, and I’d got us lost three times because I couldn’t see the road names properly, that my parents persuaded me to see a specialist.

Diagnosis I had an MRI scan and the consultant said ‘We’ve found something’. I replied, jokingly, ‘Oh, you’ve found a brain!’ - I’m terrible at doing humour when it’s really not appropriate. Then he said that it might be MS and it completely hit me. I only knew the worst stories, and I just thought ‘This is it’; I just couldn’t deal with the uncertainty. When eventually I got a letter saying it was MS, my family and I went online and did so much research. That’s when I came across the MS Trust’s website and it was so fantastic, with information that was clear and unbiased, it really helped put my mind at ease. At first I didn’t tell many other people about my diagnosis, as I didn’t want to be the latest gossip. Then I decided to hold a fundraising coffee morning to raise money for MS. That same morning I went for a run. Lots of people came up to me during the fundraiser and said ‘I don’t mean to be rude, but can I ask why this charity? It seems like a random charity to fundraise

for.’ I told them why and people were very kindly devastated. I said, ‘Thank you very much, I’ve just been for a 13 mile run!’. That was my way of saying MS is not going to change me.

My reason for running I have always been a fair weather runner, and when I was diagnosed with MS, I wanted to do something for the MS Trust and something to show that I still can. I decided to try and run 1,000km in a year, and once I’d achieved that, I decided to make it 1,000 miles in a year! It’s been the best experience ever! It’s given me such a sense of accomplishment and achievement. My main aim with this challenge was to show other people diagnosed with MS you still can do the things you love. If I’d known someone like me when I was diagnosed, it would have made that period so much easier. It’s not about the distance or the time - whether you walk, run, push, whatever - it’s just the fact you’re getting out there and doing something; achieving something for yourself. Of course not everyone can run, and I’m aware that I have been very lucky with my treatment and my brilliant MS team. But you can be the same person you were before an MS diagnosis. I kept a blog throughout my running journey, and recently discovered that it has been shortlisted for Best Blog (personal) at the 2018 Running Awards and the MS Trust has been nominated for Best Small Charity. It was just incredible, a complete shock – there was Prosecco drunk! To know people have voted and think that the blog

has been a good read, means we’re getting the message out there about MS.

Invaluable support I wanted to raise money for the MS Trust because it’s such an important charity. It’s a small charity, so sometimes the support they give to people can get hidden, and I wanted to raise awareness of the work the charity does. My nurses at the Royal Victoria Infirmary are fantastic and I hadn’t realised that all of their training comes from the MS Trust. When I got the Making Sense of MS pack after I was diagnosed, I remember going through it, and pointing to bits of paper saying ‘That’s me!’ To get that impartial information that I could pass on to family and friends too was amazing. My advice to someone newly diagnosed would be remember who you are and make sure MS doesn’t take that away from you. Yes there might be challenges, but with support – be that from the MS Trust, local groups, or family and friends – you can get through, over or around those challenges, and you will still be yourself and you can still do amazing things.

For more information about taking on a running challenge for the MS Trust, see mstrust.org.uk/ running

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

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“It’s hard to know which way to turn” Caring for a loved one with advanced MS can bring all kinds of challenges, with many families feeling like they have nowhere to turn. Here, we speak to Lisa and Tony Tanner, who care for Lisa’s mum Georgetta, about the ups and downs of being a carer, while opposite, we look at how our Advanced MS Champions Programme could help the Tanners and thousands of other families like them. My mum was diagnosed with MS 43 years ago. I was just two when she was diagnosed so I have grown up with MS. When my dad left, we made the decision to have mum come and live with us (me, my husband and our four children) full time. I’m an only child and I couldn’t bear the thought of there being nobody at home to look after her. I think I have been a carer, in some ways, since I was a child, but I never really thought of myself in that way. But now that we’re giving mum practical care: putting her to bed, washing her, personal care, things like that, it does bring it home that you are delivering care rather than just living in the same house as each other. All four of our children have

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grown up with nanny living here. They do help with things like putting mum to bed and they painted her nails when she was last in hospital. They’ve seen and done things that most children their age haven’t – one of our daughters found mum choking one day and they’ve had to get used to ambulances turning up at the house – but I think it’s actually given them caring, practical and really nice personalities. Three out of four of them are actually looking at medical careers based on their experiences. For the past eight years, mum’s symptoms have gradually been getting worse, and it is almost a full time job now. We have an agency come in each morning for half an

“We put mum’s needs before anything we want to do”

hour which allows me to go to work, but the other 23.5 hours are down to us. We put mum’s needs before anything we want to do; even if we just want to go out for a day, that’s not something we can do now. Holidays can’t really happen either; three days is about all we can do. Occasionally we can wangle five days if we get someone to help, but even then you’re spending a lot of money on somebody coming in, and you’re worrying about whether she has everything she needs or if something will go wrong. I find that the physical symptoms are actually easier to deal with than the cognitive issues mum faces, because they are logical, and you just do what needs doing. Mum was diagnosed with frontal lobe

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


degeneration a couple of years ago, and suffers with memory loss, hallucinations and delusions. It’s really horrible to see your mum going through that. Sometimes we can’t even rely on mum to remember to drink, which can lead on to other problems too. I do wish there was more specialist support for people with advanced MS and their carers. The GP is mum’s main medical port of call. She has an MS nurse now, and she can come out every three months, but that’s new to us. The previous MS nurse couldn’t commit that time. We’d only see her every three to four years, unless we phoned up with a specific problem. We haven’t seen a neurologist since mum was under a private one about 20 years ago,

“We need somebody to signpost us”

and although I’ve asked for more visits from an occupational therapist when mum’s symptoms change, it’s not been forthcoming. When mum was recently in hospital, it became apparent that if she’d had a different illness, she may have had a specialist health professional there saying ‘We’re here for you, and these are the other

health professionals you can contact’. We felt like we were floundering, to be honest; we didn’t know which direction to turn. We needed somebody to signpost us. That’s why I think the Advanced MS Champions programme is so important; the Champion sounds exactly like the kind of health professional people in our situation need.

How Advanced MS Champions will make a difference The word ‘transformational’ gets bandied around a lot, about all manner of things – some of which don’t necessarily warrant such superlatives. But we are not afraid to use it when talking about the Advanced MS Champions Programme, as we truly believe it could be life changing for the thousands of people living with advanced MS and their families. The programme will fund six Champions in different sites across the UK as part of a three-year pilot starting in the summer. You can read more about the programme, what advanced MS is and the role of the Champions at mstrust.org.uk/ams, but here we’re focusing on the difference they’ll make day to day for people living with advanced MS.

Joining up the dots Let’s be honest, the world of health and social care can be really confusing, and it’s easy to feel overwhelmed by all the different services out there. With an Advanced MS Champion by your side, there’ll be someone there to help join the dots, to break down those barriers and ensure people with advanced MS get access to the specialist services they need when they need them. This might include physiotherapy, occupational therapy, respite care, social care and palliative care.

Managing symptoms Symptoms of advanced MS are complex and debilitating, and may include mobility and balance problems, severe pain, fatigue, difficulty swallowing, spasticity, bladder and bowel problems, and loss of memory. Performing the kind of daily tasks that many of us take for granted – making a cup of tea, taking a shower, eating dinner – can be a struggle, and specialist care and support is absolutely vital. MS nurses do

an amazing job, but with so much of their time heavily skewed towards administering and monitoring the increasing number of disease modifying drugs, added on to that the burden of working within an increasingly-pressured NHS, the care for people with advanced MS can be under resourced, leaving many to deal with frightening symptoms alone. An Advanced MS Champion will be able to offer specialist guidance to help people manage specific MS symptoms, for example training to avoid choking or practical tips for coping with fatigue.

Easing the burden Research has shown us that people with advanced MS too often have to rely on friends and family for help and support. This may put pressure on relationships; people with MS might experience feelings of guilt and carers might struggle to cope with both the physical and emotional demands it can bring. Advanced MS Champions will relieve some of this

burden. They’ll ensure there’s support and guidance for a carer as well as the person with MS - be that through helping to organise a short respite break, taking the lead on those difficult conversations, or signposting families to the organisations that can help ease some of the pressures.

Independence People who have lived with MS for a while often say that, although they have MS, MS does not have them. Advanced MS may, at times, feel all consuming, so being able to live as independently as possible could make a world of difference. A Champion will be able to help introduce practical things to make this a reality, for example walking aids or house adaptations.

Offering hope Perhaps most crucially of all, for people with advanced MS, feeling like they have nowhere to turn, the Champions will bring hope.

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

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S TAY I N G ACT I VE

Wheelchair basketball When 54-year-old Jerry Burnie joined a wheelchair basketball team four years ago, he could never have imagined just how much of a positive difference it would make to his life. “It’s made the transition into a chair a positive experience rather than a negative one,” he tells Open Door.

I was diagnosed with MS in 2004 and I am currently 54 years of age. At the time I was relatively active and played the running game of basketball and jogged. Whilst it was a relatively slow progression, my mobility was gradually affected. My first mobility aid was a single stick about five years ago and then occasional use of a mobility scooter. I have some peripheral vision issues, pins and needles and slight movement issues in one arm. At a show in London I came across the Parasport stand and had a chat about possible sports I could take part in. Having played basketball before, wheelchair basketball was of particular interest. After this I contacted the local club Hereward Heat who play at a village college in Comberton, near Cambridge. Hereward Heat provided a chair and a number of free sessions to see if I enjoyed it. It took a while to get used to it, and I am still learning, but eventually I was signed up to the team and have played in the British League all over the south of England. I have been playing for four years now. Wheelchair basketball is inclusive and covers all types of disabilities, from abled-bodied to spinal injuries, all ages, teens to 72-year-olds, and it is a mixed league, although there is also a separate ladies’ league.

How does it help with my MS? Fitness: I would recommend people start playing much earlier than I did as it can keep your fitness level up. I waited a bit too long and it took a while to get used to it. Initially I was wiped out for the next day or two after two hours training. I still have to be careful to not overdo it. However this week, a few years after I started, I have been able to go to the gym for an hour and train for two hours with my team and two hours with another local team (Eastern Blue Stars) and still go to work full

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time and do one hour physiotherapy. This is a significant change which I did not think was possible originally. The extra fitness seems “It is very challenging to be very positive with the condition. to play and means you Strength: Playing wheelchair have to work out strategies basketball has helped with my upper body strength, which has been very and moves during the game. useful for helping me day to day: This is really helpful helping me to get out of the bath, use cognitively” crutches and generally move myself around. Co-ordination: Playing forces me to use my left arm a lot which is starting to be affected and would probably be used less if it were not for the sport. Independence: In the past when I would go to training my wife would come with me to help and make sure I was OK. Now, even though my mobility is worse than back then, I go by myself and load and unload chairs and drive home. I do not think this would have been possible without the sport and need to attend. Mental attitude: Many of the players have different conditions (some are able-bodied but with arthritis in the knees or similar). Some have cerebral palsy, amputations or spinal injuries. Their conditions are often more challenging than mine is at present which helps keep things in perspective and helps mentally with my journey. In many cases I think if they can manage,

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


I certainly should be able to. It is also very challenging to play and means you have to work out strategies and moves during the game. This is really helpful cognitively. Wheelchairs: Playing basketball has taken all concerns about using a chair away. I used two crutches for about a year and I struggled with doors, could not

“Playing wheelchair basketball has helped with my upper body strength, which has been very useful for helping me day to day”

carry bags or walk very far. When we went shopping my wife would go into the shop whilst I waited outside. However, about a year ago I bought a chair to use daily and had a lot of help with the specification and the best features from the basketball team. Being in the chair was like walking again which may sound strange, it required no thought, rather than loads of concentration to prevent a fall. I could go around shops again and go out all day without a problem, go into restaurants and have time to make it to a toilet without a problem (chairs are much faster than crutches). All in all it has made the transition to a chair into a positive experience rather than a negative one. My condition has still progressed but the sport allows for changes and as a result my playing score changed (if people want to know more about that please ask!) and I am still able to keep playing. We are desperately short of players, so if anyone is interested in my area, please do get in touch. I cannot recommend it enough. You can find out more about Hereward Heat Wheelchair Basketball Club at heatwbc.org.uk, and the ladies team, Eastern Blue Stars at easternbluestars.co.uk.

Sport for all Sport doesn’t have to mean kicking a football around or running a marathon – there are plenty of fun AND accessible ways to keep fit if you have limited mobility. The following organisations might provide you with some inspiration. . . British Wheelchair Basketball - gbwba.org.uk Parasport - parasport.org.uk Tandem cycling - charlottestandems.co.uk Riding for the Disabled – rda.org.uk Wheel Power - wheelpower.org.uk Wheelchair Dance Association wheewheelchairdanceassociation.org

To find out more about staying active visit mstrust.org.uk/exercise

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

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FOCU S ON

#ThinkHand Whether it’s the everyday tasks that keep you independent, like getting dressed in the morning and cleaning your teeth, or being able to do those things you enjoy, like baking or painting, the dexterity and coordination of your hands and arms is essential. This was acknowledged by the MS team at Barts in 2016 when they launched their #ThinkHand campaign and began raising awareness on the importance of upper limb function in the MS community. The awareness campaign has been steadily gaining momentum, so we decided to catch up with Professor Gavin Giovannoni to find out more about the campaign and learn why we should all be ‘thinking hand’ What is the #ThinkHand campaign? Barts-MS formally launched the #ThinkHand campaign in 2016. It is an awareness campaign with the primary objective to get the wider MS community (such as drug manufacturers and medical professionals) to focus their attention on hand and arm function, particularly in people with more advanced MS. Focusing on upper limb function is really important because it helps keep people with MS independent. When you lose the ability to walk, your hands and arms become your legs, keeping you independent and allowing you to maintain a reasonable quality of life. Unsurprisingly people with MS agree – in a survey of 360 people with MS, 88% of respondents rated hand and arm function as being more important to them than lower limb function.

What are you and your colleagues hoping to achieve with the campaign? The #ThinkHand campaign has several objectives: • To get the research community to learn more about the science behind the preservation of upper limb function and to design better clinical trials for people with more advanced MS which will allow wheelchair users to take part. • To create an environmentally friendly 9-hole peg test for home use. This test allows people with MS to monitor their arm and hand function themselves and see whether their MS is improving, stable or getting worse. • To survey UK MSologist’s attitudes to the importance

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of hand function in MS. • To perform a clinical trial that will study the impact of disease modifying drugs in wheelchair users. • To challenge NHS England guidelines for stopping disease modifying drugs (DMDs). At present we have to stop these drugs in people “If we can maintain who develop secondary progressive MS and/ people’s upper or start using a wheelchair. We owe it to people limb function we will with MS who are on DMDs to research whether maintain their quality these drugs are still effective in people with more advanced MS. of life” • To get pharmaceutical companies to do trials in more advanced MS which focus on hand and arm function. • To get the 9-hole peg test recognised as a primary outcome measure in clinical trials. • To develop a new, personalised outcome measure for assessing hand function in MS. This will challenge the current model (the EDSS) which focuses on walking distance and speed.

What has the campaign achieved so far? A lot! The good news is that Roche are about to announce a new clinical trial for people with primary progressive MS which will focus on upper limb function. The primary outcome measure of this trial will be the 9-hole peg test so people who use wheelchairs will be able to take part in the study. This trial may be the catalyst that is needed to get regulatory authorities (like the European Medicines Agency which licenses

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


drugs in the EU) to accept the 9-hole peg test as a primary outcome measure in clinical trials. We’re looking forward to this study starting and shifting the paradigm from #ThinkLeg to #ThinkHand. We’ve also been raising awareness of the campaign through various events, with #ThinkHand stands at ECTRIMS conferences, MS Life and MS Trust Conferences. Most recently we held a #ThinkHand awareness event for the campaign in London which was a huge success. The event was a celebration of hand and arm function for people with MS. To showcase the importance of this issue we invited a number of people with MS who rely on the use of their upper limbs to keep them independent and able to do the things they feel most passionate about. This resulted in a display of artwork and handmade jewellery, plus live music – all provided by these inspirational people with MS. Overall the campaign has highlighted, and is continuing to highlight, the massive unmet need for treatments to protect upper limb function in people with more advanced MS.

Can you explain a bit more about outcome measures and how they’re used in clinical trials? An outcome measure is simply the result of a test that is used to objectively determine and monitor the function of a patient. In clinical trials, outcome measures are typically done at the beginning of treatment (called the baseline) and after treatment has commenced to see whether the treatment is effective or not. More than one outcome measure can be used in clinical trials, but the primary outcome measure is the one that’s considered to be the most important. A simple example of an outcome measure is body weight. Body weight is used to determine the effectiveness of diets. In MS there are many outcome measures, but the dominant one is the Expanded Disability Status Scale or the EDSS. The EDSS is the main outcome measure used when testing drugs to see if they can delay worsening of MS. The problem with the EDSS is that it is dominated by walking ability and does not capture arm and hand function very well. This is why the EDSS is not a suitable outcome measure for trials in people who are using wheelchairs.

Can you tell us more about the 9-hole peg test and how it fits in with campaign? The 9-hole peg test is an outcome measure that is used to measure finger dexterity and arm function in patients with various neurological conditions. This test has become the gold standard for assessing upper limb function in MS clinical trials, but we would like this test to be recognised as a primary outcome measure in the same way the EDSS is. The commercial apparatus for doing the 9-hole peg test is quite expensive which is why we developed a cheaper cardboard version which people with MS can buy and use at home. This allows people with MS to monitor their hand and arm function themselves. You can find out more about the cardboard version of the test at clinicspeak.com/9-hole-pegtest

Why do you think it’s important to include wheelchair users with MS in clinical trials? It’s important for us to see whether disease modifying drugs are still effective in more advanced MS. This would challenge the current stopping guidelines for DMDs that are not evidencebased. Why should we write-off people with MS as being irredeemable once they have lost lower limb function? We know how important arm and hand function is to people with MS. If we can maintain people’s upper limb function we will maintain their quality of life, keep them independent and save the NHS and society money.

Is there anything people with MS can do now to help improve and maintain function in their hands and arms? Yes, there are plenty of things people with MS can do. There is a saying in medicine: “If you don’t use it, you lose it.” I would encourage all people with MS to adopt a regular exercise and self-administered rehabilitation programme to maintain upper limb function. Another option is to ask your physiotherapist or occupational therapist for an upper limb function exercise programme. Don’t shy away from doing difficult fine motor tasks (activities that use the small muscles in your fingers, hands and wrists like writing and picking up small items); if you stop doing them, you may find it harder to complete these tasks in the future. In addition, people with MS should do all the common sense things to manage their MS holistically. This includes things like stopping smoking if you’re a smoker and making sure you have optimised your sleep hygiene and diet. If you haven’t done so already, please be screened for high blood pressure and diabetes and make sure they are properly treated. If you are having recurrent infections, for example urinary tract infections, you need to make sure you are following a programme to prevent these kind of infections as evidence shows that recurrent infections may make MS get worse more quickly. It is also wise for your medications to be reviewed by a health professional regularly as some medications can interfere with the way the brain works and block plasticity pathways. Brain You can find arm plasticity refers to the brain’s and hand exercises at ability to change over time. mstrust.org.uk/ exercisesPlasticity is important for regaining function after a people-ms relapse and maintaining function in the long term. Professor Gavin Giovannoni is Chair of Neurology at Barts and the London School of Medicine and Dentistry.

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

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A S K T H E E X P ERT

Bowel and bladder problems Talking about your toilet troubles can sometimes be embarrassing - there’s no getting away from it! But bowel and bladder symptoms in MS are common and often easily managed, so it’s important to be open about what you’re going through so you can get the support you need. We put some of your questions about these issues to MS specialist nurse Noreen Barker.

Q

What are the pros and cons of using catheters?

Noreen says: Catheters can be a worrying issue. Nowadays we have lots of people who manage their bladder if they have any urgency, frequency or incomplete emptying by using an intermittent catheter. When this is first discussed, some people may have a few concerns. It’s not natural to want to put a tube into yourself, but there’s a great range of catheters in different materials and sizes. With intermittent catheters you put them into the bladder, and the idea is you drain out the residual urine that’s there, take the catheter out, and then you get on with your day. People might worry about how they manipulate catheters, but I would say if you have the dexterity to do your buttons up, put your earrings in or hold a pen, there is probably a catheter that will suit you. The other worry ladies have is that anatomically it can be quite challenging to put the catheter 18

in, but if you have someone who teaches you in the right way, it can make a big difference. If you’re getting up to go to the toilet four or five times at night, having an accident at night, or rushing to the toilet, they can make a big difference. Out of all things over the years I’ve encouraged people to do, it’s usually one of the things that changes people’s lives for the better.

“Always seek advice, as sometimes a fresh pair of eyes on something can make a big difference”

Q

Are there any exercises I can do to help strengthen my bladder?

Noreen says: There are exercises called pelvic floor exercises, or if you’re looking on an American site they may be called Kegal exercises. These are exercises to engage your pelvic floor, which is a sling of muscles in your pelvis, which supports all of your pelvic organs. If you have any weakness of your pelvic floor, for example if you’ve had babies or problems with constipation, then you can do exercises to strengthen these muscles. Usually they are talked about in terms of stress incontinence, which is when you leak if you cough, sneeze or laugh, but they are also very good at helping to calm down the ‘urge’

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

if you have some urge incontinence as well. Bladder and Bowel UK (bladderandboweluk.co.uk) have useful information on pelvic floor exercises.

Noreen Barker is an MS specialist nurse at the Royal Free London NHS Trust.


Q

What is the best way to deal with constipation?

Noreen says: I think the best way is looking at what is happening. Is this a new problem? Or is this something that’s been going on for a long time? Sometimes it’s good to look at what your bowel habits were like before and think about what has changed in life. It could be very simple – eating the right foods and drinking the right things. Or sometimes it could be making sure you allow yourself enough time to go to the toilet. We all live such busy lives now, so if you’ve got problems with faecal urgency or frequency, you may have to allow yourself time to do the right things in the morning. Many of us now will eat our breakfast and rush out the door, and not actually give ourselves the time to go to the toilet. Naturally, our bodies have something called the gastrocolic reflex, which is when we eat or drink something and that stimulates our gut peristalsis, and most of us will get a call to go to the toilet maybe 20 minutes or so after we’ve had something to eat or drink. For some people that will be first thing in the morning, for others in the evening, depending on the hours you work or shift patterns, but it’s trying to find that right time to go. Other things people could try

Q

include: abdominal massage, keeping mobile and exercising. There are lots of medications out there too; it could be a once-everyso-often stimulant to get your bowel moving, softeners to keep the stool easy to go or very strong medications, such as suppositories or enemas if people really can’t go. But sometimes it’s just as simple as having the right position on the toilet. So always make sure you have your feet on the floor or a little stool if you can’t reach the floor, your knees slightly higher than your hips and sit “Sometimes it’s forward a little bit. good to look at what That will put you in your bowel habits were a nice anatomical like before and think about position to go. what has changed in Some people tell me life” they use other things to help stimulate their bowels, for example adding linseed or flaxseed into their diet, taking aloe vera, or I have lots of people who swear by their cup of coffee in the morning. It’s just about finding the right thing for you and finding that right pattern which keeps things going. If you can’t manage it by yourself, always seek advice, as sometimes a fresh pair of eyes on something can make a big difference.

What incontinence supplies are available on the NHS and how can I access them?

Noreen says: This is a very common question. Incontinence supplies - from little shaped pads to quite big products - are available on the NHS but they are not a prescription item. In order to access them you are going to need to see your local bladder and bowel service. They often have a policy that they won’t supply to

people who want to wear pads ‘just in case’, and they might have a certain criteria, so say you have an accident three to four times a day. Usually a pad will be given if you’ve gone through a thorough assessment.

Sometimes I have bowel problems where, without warning, I just lose it, even when I’m out. Is there anything I can do to help with this?

Q

Noreen says: This can be a really tricky problem. A lot of the time it depends on what your normal bowel habits are like. For all of us, if you’re motions are very loose, you can’t always distinguish what is wind and what is your bowel. But having a regular routine and trying to empty your bowels before you leave the house might help. Sometimes it’s quite a long process to get that right pattern. But often these symptoms can be improved, so I would say the most important thing is to see someone about it and get an individualised care plan.

Q

What is your top tip for dealing with MS bowel and bladder symptoms?

Noreen says: My top tip has got to be don’t keep it a secret! They are the most common symptoms in MS, and out of all of the symptoms they are quite easily improved, if not sorted completely. I think it’s not being afraid to talk to people about it, because we can all have problems with our bowel and bladder, whether we have MS or not.

For more discussion of bowel and bladder problems in MS, and to find out about our free books, visit mstrust.org.uk/a-z/ incontinence

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

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GE T IN VOLV E D

Taking a leap Last year, 64 daring MS Trust supporters took a leap of faith and jumped out of a plane with a parachute, raising over £44,000 to help others affected by MS. Adventure lover Sarah Harper explains why she wanted to take part in a sponsored skydive.

I was diagnosed with MS back in 2011 and at the time I was sure that I was facing nothing positive and that all my adventures and outdoor sports were surely going to have to stop. This was a massive blow to me. As someone who grew up in the Lake District, outdoor adventures were part and parcel of my daily life and the idea that I might be limited in doing these was devastating. As time passed, I adjusted to my diagnosis and, in between having two children, I realised that my active life didn’t have to stop. I just needed to slow down a bit, ensure good rest, eat well and pace myself. Since being diagnosed I have increased my physical activity and meeting my physio recently, she was amazed when I listed all the activities I do.

Taking to the skies I realised that something was missing though and that was doing a skydive. It was on my list of things to do before I’m 40. My friend Sarah is a keen climber and netballer and when this topic came up we discovered we both wanted to do it. We were nervous but spurred each other on. I’d seen that the MS Trust were keen to have fundraisers so we volunteered and set up an online fundraising page. We had raised over £1,500 between us before jumping and when the day came we were terrified but determined to do it. Our first and second attempts were hampered by bad weather and we began to think we would never do it, but our third attempt fell

“Don’t let MS on a gloriously calm day and we realised hold you back, do this was it! what you can but most All went well on the day and I was of all enjoy life. MS might relieved to be attached to the most senior affect us in different ways skydiver when the time came to get in the but life is still there to plane. Sarah went first and it was terrifying be lived!” to watch as she fell out of the plane attached to her instructor. Then my turn came and my heart was in my mouth as we balanced on the edge of the plane about to jump. I looked out at the clouds as we shuffled to the edge of the plane and then he counted and suddenly we were falling. Trying hard to remember everything I’d been told in pre-jump training, I felt myself dropping through the sky.

An amazing experience The photographer was then in front of me and I managed a smile and thumbs up. Apart from my (slightly weaker) left leg not being quite in the right position, it was an amazing experience! Then the parachute opened and I was gently floating to the ground. I was so overcome with emotion I couldn’t stop laughing and crying at the same time, it was fantastic! When we landed, Sarah and I hugged and celebrated our achievement together knowing that we had raised money for the MS Trust. To anyone out there contemplating it, I’d say don’t let MS hold you back, do what you can but most of all enjoy life. MS might affect us in different ways but life is still there to be lived! Get out there and do it!

Want to give skydiving a go? You can take part in a tandem skydive for the MS Trust at one of 20 participating airfields across England, Wales and Scotland. Book your jump during June and be part of our ‘Jump in June’ campaign, raising vital funds and awareness. If you can’t take part during June, you can book a tandem skydive for another day that suits you. Airfields are open most weekends and some are also open during the week. No experience is required as all training is given on the day and if you raise the minimum sponsorship of £395, this will cover your skydive costs too. You’ll jump from at least 10,000ft, harnessed to an instructor who will control the parachute and the landing. Some airfields are better able to accommodate the needs of people with limited mobility than others, please give us a call to find out more. For more information about skydiving for the MS Trust, visit mstrust.org.uk/jump or call 01462 476707.

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


Remembering someone you love

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 Miles for MS Sign up to our new distance challenge. Half a mile or 100 miles, you pick how far you want to go and do it your way! mstrust.org.uk/miles

British 10K, London

If you have lost a loved one, you may be interested in a new form of support we have established in partnership with MuchLoved. You can now create a My Star (MS) Tribute page online to remember someone you love and celebrate their life. You can use your tribute page to express your feelings and memories in ways that are right for you, using words, pictures, music and even video. The page can be private, or one which you share with family and friends. If you wish, you can also use the site to raise funds to help us make sure no one has to face MS alone. There is no obligation on anyone to make a donation to the MS Trust when setting up or visiting the page. However, some of our supporters choose to give a gift on a special date, encourage donations in lieu of flowers at a funeral, or take part in fundraising events. “When my sister Kathleen died, I could have said ‘that’s it now’ and left it at that. But that‘s not what Kathleen would have wanted; it was not who she was. Fundraising for the MS Trust is my way of making something positive out of the overwhelming sense of loss I felt when she died. It is my way of showing my love for her, remembering her and keeping her name alive”. Kenny My Star Tribute pages are intended to be a source of comfort. Regardless of whether you have recently suffered a bereavement, or lost someone you love some time ago, please do set up a My Star Tribute page if you feel it will be a source of comfort for you, your family and friends.

If you would like to find out how to set up a My Star (MS) Tribute page please visit mstrust.org.uk/in-memory.

Join our team on 15 July and run to support people with MS. We offer discounts for teams of four or more people so get your friends and family involved too! mstrust.org.uk/british10k

My Garden Party Start planning your summer garden party! Visit our website to get your My Garden Party Pack which includes a fundraising guide, poster, bunting, invitations and more. mstrust.org.uk/mygarden

Thames Path Challenge Walk 100km, 50km or 25km on 8-9 September alongside the UK’s most famous river, through gorgeous Hampton, to the riverside town of Henley-onThames for a family fun-day big finish! mstrust.org.uk/ultrachallenge

Climb Ben Nevis Join our new trek from 21-23 September 2018 and trek to the summit of the UK’s highest mountain. Booking closes at the end of June. mstrust.org.uk/bennevis

Monster Ski, Chamonix Our exclusive ski challenge is back and we’re looking for experienced skiers and boarders to join us in Chamonix from 17-21 March 2019 to ski the equivalent height of Mount Everest every day. mstrust.org.uk/monsterski

To find out more about supporting the work of the MS Trust call 01462 476707 or visit mstrust.org.uk/fundraising Open Door May 2018 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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1 5 MIN U T E S W ITH MS YouTuber

Isobel Thomas When Isobel was diagnosed with MS aged just 22, she vowed it would “make me not break me”. Determined to help other young people in a similar situation, she decided to start vlogging about her journey with MS. Over a year later, Izzy’s YouTube channel, Izzy MS (youtube.com/izzyms), has thousands of subscribers and her videos have proved an invaluable source of support for people with MS from all over the world. We caught up with Izzy to find out more. When were you diagnosed with MS and how have you dealt with your diagnosis? I was diagnosed shortly after my 22nd birthday, following a six-week stay in hospital where I experienced my first MS attack which paralyzed my left arm and leg. It was a completely terrifying experience – I did not think that at 22 I would be teaching myself to walk again. I was diagnosed with highly active relapsing remitting multiple sclerosis when I was discharged from hospital and I remember crying every day and not sleeping for two weeks. It took me about a year to accept things and feel like myself again. Do you feel that being diagnosed with MS has changed your outlook on life? Definitely. During my six weeks in hospital, being unable to walk – I had a lot of spare time on my hands to really think about my life and re-evaluate things. Being 22, my life was focused on feeling stressed about my future and starting a career. However, my life has been flipped from worrying about money and career paths to putting my health at the top. I remember when I was in hospital feeling totally helpless and thought to myself that even the richest person in the world would feel as helpless if they went through what I was going through. I had no control over what was happening to my body and no amount of money could change that. So now I truly understand the term ‘Your Health is Your Wealth’, and focus my thoughts on putting my health at the top of my priorities. What advice would you give someone who’s just been diagnosed with MS? Try not to put pressure on yourself. An MS diagnosis is a big, scary diagnosis to have and I think the most important thing you can do is give yourself time to come to terms with it. Surround yourself with people who love you and support you, and be kind to yourself. Time does heal all.

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What inspired you to start vlogging about your life with MS? After my diagnosis I felt very lost and went through a period where I was grieving my life pre-diagnosis. After giving myself enough time to be upset I decided to turn my diagnosis on its head and instead of letting it break me - I wanted it to make me. Whilst I was in hospital, I was desperate to see a younger person talking openly about having MS and I also wanted to see them living their life normally as I had no idea what I could still do with this diagnosis. So I decided to create the videos that would have helped me at the start of my journey in case it would help someone else. Have you found it therapeutic? Vlogging my journey with MS so far has been therapeutic as it has forced me to talk about my diagnosis and my time in hospital, both of which were extremely traumatic for me. As a person, I tend to bury my problems and not address them, and so by talking openly about these things in my videos it has helped me to deal with them instead of blocking them out. Plus, all the positive comments and love I get from people who watch my videos have really helped! What’s the reaction been like to your videos? Extremely positive. I get lovely messages and comments every day from people thanking me for making my videos, relating to similar things that they have been through, and from people saying how my videos have helped them. I read every single comment I get and they inspire me to keep making videos! Who is your biggest inspiration and why? My biggest inspiration(s) are my parents. They have taught me that when things go wrong in life, you cannot give up and you have to keep fighting. They encourage me to go out and live my life and to not let it be defined by my MS diagnosis.

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

Find our YouTube channel for young people affected by MS at mstrust.org.uk/mstv


Climb Ben Nevis for the MS Trust 21-23 September 2018

To book, visit k/ mstrust.org.u all bennevis or c 7 01462 47670

Trek to the summit of the highest mountain in the UK. Raise funds to support people affected by MS. Registered charity no. 1088353. Acting as agents for Skyline Events.


Have questions about MS?

We’re here for you. We’re ready to help on day one, and every day after.

Call: freephone 0800 032 38 39 Email: infoteam@mstrust.org.uk Visit: mstrust.org.uk Order MS Trust publications Making sense of MS

Little Blue Book (introduction to MS) MS-444

Core pack – includes information sheets: • About MS • What happens after diagnosis? • Making the most of appointments • Living well with MS • Resources brochure MS-448

Books Living with fatigue MS-204

Talking with your kids about MS MS-316

Managing your bowel MS-430

The kids’ guide to MS MS-286

Disease modifying drugs MS-90

Sex & MS: men MS-356

Are you sitting comfortably?

Primary progressive MS MS-352

Managing your bladder MS-429

Sexuality & MS: women MS-213

MS and me: a selfmanagement guide MS-318

Secondary progressive MS

MS-290

MS-458

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We would like to send you information about MS, the MS Trust and the work we do as a charity, and updates as to how you can get involved and help to support us. Would you like to receive this information from the MS Trust? (please tick) By post By email This will not stop any existing communications you receive from us. You can unsubscribe or change your email and postal preferences at any time online at mstrust.org.uk/preferences or by calling 01462 476700.

Please return to MS Trust, Spirella Building, Bridge Road , Letchworth Garden City, Herts SG6 4ET Remember, if you have any questions about MS you can call our free enquiry service: 0800 032 38 39 All our information is free, but we can only continue to offer our services thanks to donations. If you’d like to support our work, visit mstrust.org.uk/donate or text OPEN44 £2 to 70070 Registered charity no. 1088353 The MS Trust and our trading company value your support and promise to protect your privacy. We will only contact you about our work and will never exchange your details or sell or rent your data to any other commercial or charitable organisation. You can unsubscribe or change the way we communicate with you at any time. To read our privacy policy please go to mstrust.org.uk/privacy. If you would like to contact the MS Trust about the information we send you, please call 01462 476700

Open Door May 2018  

The May issue of the MS Trust's free quarterly magazine for everyone affected by MS

Open Door May 2018  

The May issue of the MS Trust's free quarterly magazine for everyone affected by MS

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