Open Door May 2017 by MS Trust

Open Door Quarterly newsletter of the MS Trust

May 2017

MS info you can trust How the MS Trust is helping more people than ever find the information they need

Also in this issue Why weâ&#x20AC;&#x2122;re bringing more MS nurses to Leicester and Bradford

Promising longterm results for stem cell therapy

Driving with MS: what do you need to know?

Top tips for staying active with MS

Not your cup of tea?! “Jumping out of a plane is not for everyone, but including the MS Trust in your will – no matter how big or small the gift – is something that we can all do to make a difference.” Maureen, 72, MS Trust skydiver and legacy pledger Here at the MS Trust, we never cease to be amazed by the things our supporters do to raise money for us. But if you prefer to keep your feet firmly on the ground, there are many other ways you can support the MS Trust, including leaving a gift in your will. Legacy gifts raise over £2 billion every year for charities in the UK and are such an important source of income for the MS Trust. It is truly one of the most thoughtful and generous ways of giving, and it is something that we can all do to make a difference for the 100,000 people living with MS in the UK.

You can meet M and he aureen ar in the “ her story 15 with” in minutes terview on page 2 2.

To find out more visit mstrust.org.uk/legacy, or to request your free Legacy Information Pack call 01462 476700 or email info@mstrust.org.uk 2

Open Door May 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust

Contents

Welcome to the May issue of Open Door

As this issue reaches you the MS Trust is reviewing another very successful MS Awareness Week. With your help we got people across the UK talking about MS, and spread the word about our campaign to fund more MS nurses where they are urgently needed. I’m delighted to say that, as we go to press, we have helped recruit our first two nurses, who will begin work in Leicester and the surrounding area in June. You can read more about our campaign on p14. We receive no funding from government or the NHS so this vital work is only possible thanks to your support. I’d like to thank all of you who gave so generously in our spring appeal. Your donations will make sure that hundreds more people don’t have to take on MS alone. One of our goals in MS Awareness Week is to reach more people living with MS, so for many of you, this will be your first Open Door. Welcome! In every issue we aim to bring you the latest MS news (for example new drugs that are being approved – see p6), accessible digests of new research (see our account of stem cell research on p8), practical tips (this issue looking at staying active and driving with MS) and ways to get involved with our work (see p21 for news about the accessible Superhero Tri which we’re very excited about). We’re always striving to make sure that Open Door covers the subjects and issues that really matter to you. To this end, back in March we asked some of you to complete a short survey, sharing your thoughts about our newsletter. We were delighted to see that you were unanimous in saying that you would highly recommend Open Door to someone who’d just been diagnosed with MS. So please spread the word! If you know someone with MS who doesn’t already receive Open Door, tell them they can sign up for free! Simply call 01462 476700, email opendoor@mstrust.org.uk or visit mstrust.org.uk/sign-up Open Door has always been free to our readers, but it costs us £2 to produce and post each issue to you. Pam Macfarlane If you’d like to donate to Chief Executive, MS Trust cover these costs text OPEN44 £2 to 70070

News Why we’re bringing more MS nurses to Leicester and Bradford, new reports on the state of neurology services, Zinbryta approved by NICE, Ocrevus approved by the FDA, our report on emergency admissions and our amazing fundraiser, Andrew Merry

Research update Promising results from long-term studies of stem cell transplants, plus when is it safe to stop taking disease modifying drugs?

Knowledge is power The MS Trust is helping more people than ever find the information they need. Meet the team who answer your calls, put together our books and manage our online resources

Invaluable support MS nurse Allison and Jon, who has had MS for 10 years, explain the difference that the new nurses we’re bringing to Leicester will make for them

Staying active Physiotherapist Liz Betts introduces ideas for staying fit, while Ann and Carol share their stories

Driving with MS How does MS affect your ability to drive and who can help?

Get involved Ruth explains why she signed up for our Grand Canyon trek, introducing our Superhero Tri event, plus lots of opportunities to support the MS Trust’s work

15 minutes with... MS Trust supporter Maureen tells us why she decided to skydive at the age of 72

Multiple Sclerosis Trust, Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk W mstrust.org.uk Registered charity no. 1088353 Open Door May 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

News MS Trust bringing new MS nurses to Leicester and Bradford The first nurses to be recruited through our MS Nurse Funding Programme will bring vital support to thousands of people living with MS emergency care when their symptoms get worse (see our story on emergency admissions on p7). Our research into nursing levels across the UK has found around two-thirds of the over 100,000 people with MS in the UK live in areas where there aren’t enough MS nurses. The research highlighted Leicester and Bradford as areas urgently in need of support. “The MS Trust has long campaigned about the need for more MS nurses, but this is the first time we have taken the step of helping develop and fund new posts,” said our Chief Executive, Pam Macfarlane. “All of us at the MS Trust are MS nurse Liz Watson with Dave, one of the people with MS she works with incredibly excited about the prospect of the new We’re grateful to We are delighted to announce that continue to support the MS nurses in Leicester the MS Trust is working with NHS nurses’ training and all our supporters for and Bradford. We know trusts in Leicester and Bradford development, as we do they will make a huge helping us take this first to recruit the first new nurses for all MS nurses in the difference to the hundreds step towards our goal of in our Specialist Nurse Funding UK. of local people living with making sure that no one in Programme. At the MS Trust we MS. We’re grateful to all Two new MS specialist nurses have always believed that the UK has to take on MS our supporters for helping will be based at Leicester General MS specialist nurses are alone. us take this first step Hospital and one nurse will be based vital for people living with towards our overall goal of at St Luke’s Hospital in Bradford. MS. They can help people making sure that no one in The MS Trust will work with the MS adjust to diagnosis, the UK has to take on MS teams at both sites to help with consider complicated alone.” recruitment, and we will support treatment options, manage a wide “There are about 800 people with them to make the most of the range of symptoms and learn to live MS in Bradford, and right now I am new nurses and demonstrate the well with an unpredictable, often the only the MS nurse covering the difference they make to local people debilitating, lifelong condition. area,” said Liz Watson. “This means living with MS. Without MS nurses, people I have a caseload over double the After 15 months, the respective with MS may have to manage MS Trust’s sustainable level, and so NHS trusts will take over funding difficult symptoms alone. They people with MS don’t always get the for the posts, but the MS Trust will may also have to rely on expensive

Open Door May 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust

level of service they need. Another MS nurse joining us, thanks to the MS Trust and their supporters, will make a huge difference for people living with MS. Our capacity for helping people will double. We will be able to see more people in clinic and our telephone response rate will be a lot quicker.“ Allison Smith, one of the existing MS nurses in Leicester, said: “We were so pleased to be the recipients of the funding, but also all the support from the MS Trust. We have big plans to help people with MS throughout Leicester, Leicestershire and Rutland by having more community clinics and allowing more access to MS specialists. There are about1,600 people with MS in our area and I am sure they will be happy to hear that they will have more access to support.” Jonathan Knight has been supported by the MS nurses in Leicester since he was diagnosed with MS almost 10 years ago. He said. “I’d like to say thank you very much to all the MS Trust’s supporters. The new MS nurses will make such a difference. You could go through something like MS alone. Or you could go through it with someone on the end of the phone who you can rely on. I would always take the second option, definitely. For people to be funding this to help people like me is amazing.”

To read more how the MS Trust has supported the MS nurses in Leicester to help people with MS see the story on p14 To find out how you can support our nurse funding programme visit mstrust.org.uk/nurses

Neurology services failing people with MS according to new surveys Two new reports have highlighted the problems facing people trying to access neurological services in the UK Falling short, a report published by the Neurological Alliance, reveals that people’s experience of diagnosis, access to specialists and on-going care and support has significantly deteriorated in the last two years. Meanwhile a report from the Association of British Neurologists (ABN) highlights dramatic variations in access to neurologists across the UK. The Neurological Alliance is the collective voice of over 80 UK charities, including the MS Trust. They surveyed thousands of people with neurological conditions and found that: • 42% of people saw their GP 5 or more times before seeing a neurological specialist – an increase from 31.5% in 2014 • People who feel involved in making choices about health services to at least some extent dropped to 63% in 2016 from 71% in 2014 • Only 56% of people feel their health and care professionals work well together at least some of the time, against 67% in 2014 However, despite these findings, the Alliance is encouraged by the establishment of a National Neuro Advisory Group, and other opportunities for neurology services. They call on the Department of Health and NHS England to commit to improving services. The ABN survey of acute neurology services found that the likelihood of someone with a

neurological problem being seen by a neurologist continues to vary dramatically depending on where they are admitted. The report finds that: • 20% of hospitals surveyed had access to a neurologist on 3 days or fewer per week. • 6 hospitals had no acute neurology service at all • 26% of district general hospitals provided a ward consultation service on 3 or fewer days per week The ABN welcomes the proposal, currently being considered by NHS England, for a National Strategy for Neurology, but calls for the variations it has found to be addressed urgently and in a properly funded manner. The MS Trust is very concerned about what these reports reveal about standards of care for people living with MS. “People with MS rely on access to ongoing neurological care” said Pam Macfarlane our Chief Executive. “These reveal that too many people are having to manage their MS alone, or with the support of non-neurological, non-specialist health professionals. This can have a severe impact on their health, and can result in expensive, often avoidable emergency treatment. The MS Trust is committed to making sure that no one has to manage MS alone, and we will continue to work within the Neurological Alliance and the ABN to achieve this goal.”

Open Door May 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

Ocrevus (ocrelizumab) approved by FDA Ocrevus (ocrelizumab) has become the first medicine to be licensed for primary progressive multiple sclerosis (PPMS) by the FDA (Food and Drug Administration), the American drug regulator. The FDA has also licensed ocrelizumab as a treatment for relapsing remitting MS. Ocrelizumab is currently being assessed for drug licensing by the EMA (European Medicines Agency) for both relapsing remitting and primary progressive MS. It will then be appraised for cost effectiveness as an NHS treatment for both types Injectable drug is taken once a month and reduces relapse of MS. If these steps are successful rate by 50% compared to placebo ocrelizumab could be available on the NHS by 2018 at the earliest. The Zinbryta (daclizumab) has been offering a different dosing schedule, FDA decision does not affect the approved as a treatment for a different mode of action and a European assessment. relapsing remitting multiple different profile of benefits and “This is an encouraging step sclerosis on the NHS in the United risks compared to existing disease forward for people with PPMS in the Kingdom if you have: modifying drugs.” USA, “ said Pam Macfarlane, Chief • relapsing remitting MS (RRMS) Zinbryta is a disease modifying Executive of the MS Trust. “Though and have continued to have drug which is self-injected at the UK is part of a separate licensing relapses while taking one of home once a month. The drug was process in Europe and there is still the other disease modifying licensed by the European Medicines a long way to go, the FDA decision drugs; or Agency in July 2016. is a cause for optimism. The MS • rapidly evolving RRMS (two or In clinical trials, Zinbryta reduced Trust will keep watching how more relapses in the previous the number of relapses by about things are developing here year and MRI evidence of MS 50% compared to placebo and and provide updates activity). reduced the number of relapses by when we can. We To find out more about However, in England and Wales, 45% compared to beta interferon. are well aware how MS disease modifying NICE has recommended that The most common side effects important this new drugs visit Zinbryta can be prescribed only if of Zinbryta include infections or medicine could you are unable or unwilling to take swelling of the chest, nose and mstrust.org.uk/ be for people with Lemtrada. throat, increased levels of liver ms-decisions PPMS. This reverses an earlier decision enzymes, skin rash or eczema, Ocrelizumab is by NICE that it did not intend to depression and swollen lymph taken as an intravenous recommend Zinbryta. When NICE glands. infusion (drip) every six consulted on this decision, the Less common, but more months. It reduces the number of MS Trust responded, arguing that severe side effects B cells, a type of white blood cell or the advantages of Zinbryta had include serious lymphocyte thought to be involved not been adequately taken into infections, To find out more in the abnormal immune response account. serious skin about MS disease that attacks the myelin coating of “We are pleased that Zinbryta has reactions nerve cells. modifying drugs in the now been approved throughout and liver In primary progressive MS, people pipeline visit the United Kingdom,” said Pam damage. taking ocrelizumab were 24% less mstrust.org.uk/a-z/ Macfarlane, Chief Executive of the likely to have an increase in their drugs-development MS Trust. “It further expands the disability than those taking placebo. range of disease modifying drugs by

Zinbryta (daclizumab) approved for use in the United Kingdom

Open Door May 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust

Rise in emergency hospital admissions for people with MS

Multiple Sclerosis Emergency Admissions

89,030 people with MS living in England

New research conducted by the MS Trust and NHiS has found that emergency hospital admissions for people with MS rose in 2015/16. This updated data on research originally carried out in 2014 shows that people with MS are still all too often ending up in hospital with complications of their MS. It’s concerning that almost one in 5 people with MS were admitted in the year, and many more than once. Many of the reasons for admission – bladder problems like UTI, bowel problems like constipation and respiratory infections – are things which could be prevented with proactive care. That’s why it’s so important that everyone with MS has access to an MS specialist nurse with a sustainable caseload and has a specialist annual review every year. This means that problems can be identified and addressed at an early stage, before they get to the point where someone ends up in hospital. MS Trust research has identified that people with MS need access Find out more about to a flexible blend of three kinds our work improving of care: disease modification, symptom management and MS services neurorehabilitation. We believe mstrust.org.uk/ that services need to be set up to forwardview deliver all of these when people need them.

Emergency admissions are rising

16,690

12.7% Increase 2013/14

Total emergency admissions

2015/16

average number of emergency admissions per person admitted at least once

26,679 £

26,679

23,665

People with MS admitted as an emergency at least once in 2015/16 - nearly one person in ﬁve

in 2015/16

£46 million

£1,733 Average emergency admission cost

Total emergency admissions cost

...with an average length of stay of 8.2 days

Focus on prevention Respiratory issues

£5.4m on emergency admissions

The most common reasons for emergency MS admissions are often preventable with proactive care: infections (urinary tract and respiratory), bowel problems including constipation, and MS itself (including MS relapse).

Urinary tract infections

14% of emergency MS admissions

£2,639

Bladder and bowel related emergency admissions

£10.4m

£2,512

Total cost

per admission

Yeoman Warder to climb Mont Blanc for MS Andy Merry, a Yeoman Warder at the Tower of London, will be climbing Mont Blanc in June with five friends and family members to raise funds for MS Trust and The Royal Marines Charity. He hopes to raise over £40,000 for the MS Trust alone and is well on the way to his ambitious target. The former Royal Marine, who was diagnosed with MS in March last year, said “When I was told that I had MS I must admit to being somewhat relieved as I could now make sense of the symptoms I was experiencing

and vowed to see the future as a glass half full. “I spent 25 years in the Royal Marines and always strived to be the best I could be. I always pushed and challenged myself doing the most arduous courses in the most hostile environments and I now see MS as just another of these challenges.” Watch a video of Andy talking about his challenge at mstrust.org. uk/andy-merry and follow Andy and his team’s progress via their website mtblancforms.com

Open Door May 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

Research update

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

Promising results from long-term studies of stem cell transplants Stem cell treatments for MS have attracted a great deal of interest, but there has been little information about how people do in the longer term following a transplant. Two recently published studies have reported on levels of disability in people with MS five years after receiving stem cell transplants Authors Muraro P, et al Title Long-term outcomes after autologous hematopoietic stem cell transplantation for multiple sclerosis Journal JAMA Neurology 2017, Feb 20 [Epub ahead of print] >> Read the abstract: tinyurl.com/long-term-stem-cells

The study The investigators requested data from 25 centres spread across 13 countries which had used a range of stem cell treatment methods to treat people with either relapsing or progressive MS between January 1995 and December 2006. People were included only if a minimum set of data had been recorded about them: type of MS, disability score (EDSS) at the start, details on the transplantation method used, and at least one follow-up appointment after the transplant. Data sets were combined and analysed for 281 people with both relapsing and progressive types of MS and at different stages of their MS who had received transplants using different treatment methods.

The results

increase in their disability. Those who did the best following stem cell treatments were more likely to be younger, have relapsing remitting MS, have taken fewer disease modifying drugs and have lower levels of disability at the time of treatment. 73% of people with relapsing MS and 33% of people with progressive forms of MS were free of disability progression at 5 years. Eight deaths (2.8%) occurred within 100 days of transplantation and were considered to have been caused by the treatment.

To find out more about stem cells visit mstrust.org.uk/a-z/ stem-cells

Five years after treatment, just under half of the 281 people included in the analysis had no

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Authors Nash RA, et al Title High-dose immunosuppressive therapy and autologous HCT for relapsingremitting MS Journal Neurology 2017;88:842-852 >> Read the full study: tinyurl.com/halt-ms

The study The US-based HALT-MS clinical trial assessed autologous haematopoietic stem cell treatment in 24 people with highly active relapsing remitting MS. The main measure of the study was a combination of no disability progression, no relapses, and no new lesions on MRI.

The results After five years, about two thirds continued to show no relapses, no progression and no new lesions. All those in the study experienced severe side effects. Most of these happened within the first 30 days after transplant and were linked to low white blood cell counts and infections. No deaths were directly attributed to the treatment, however three people died during the five years following the treatment. These participants all experienced worsening of their MS.

What does it mean? The results from these two studies show that one half to two thirds of people having stem cell therapy remain free from further MS activity

for at least 5 years after treatment. Neither of the studies included comparative groups taking placebo or an alternative treatment so it is not possible to say whether the people in these studies have done better (or worse) than people who did not have stem cell transplants. Stem cell transplants are not without risks; although treatment regimens, patient selection and after-care have reduced risks, clinical trials since 2001 have still had treatment-related death rates of one or two people in every 100 (1.3%), according to analysis by the European Group for Blood and Bone Marrow Transplantation. The majority of deaths were due to infections. Both of these studies acknowledge that to fully assess the risks and benefits of AHSCT, understand where it fits into current treatment options for MS and make it more widely available on the NHS, what we really need now is evidence from controlled, randomised clinical trials directly comparing AHSCT against other treatments in both relapsing remitting and progressive MS.

What is autologous haematopoietic stem cell transplantation? Autologous haematopoietic stem cell transplantation (AHSCT) uses high doses of cancer chemotherapy drugs to wipe out harmful cells in your immune system. The stem cells are used to â&#x20AC;&#x153;regrowâ&#x20AC;? your immune system so that it no longer attacks myelin or causes inflammation in the brain and spinal cord. The first part of the process requires taking a number of drugs to stimulate release of stem cells from your bone marrow into the blood stream. Stem cells are collected from your blood and kept frozen while the next stage of the treatment is carried out. For the next part of the treatment you take cancer chemotherapy drugs which either completely eliminate (myeloablative or high intensity chemotherapy) or partially eliminate (non-myeloablative or low intensity chemotherapy) your bone marrow and immune system. Current treatment methods for people with MS have favoured lower intensity chemotherapy which carry a lower risk of complications and death. Finally, your immune system is rebuilt using your own haematopoietic stem cells. Haematopoietic stem cells can develop into the different types of cells found in the blood To read what including some cells some stem cell which are part of the pioneers think about the immune system. risks and benefits of the

treatment visit mstrust.org.uk/ stem-cells-OD

Open Door May 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

When is it safe to stop taking disease modifying drugs? If your MS progresses from relapsing remitting to secondary progressive, you might be advised to stop taking any disease modifying drugs. But when is it safe to do so? This American study aimed to get a clearer picture of who can stop taking DMDs without risk of a return of MS activity in the form of a relapse or lesions seen on an MRI scan Author Birnbaum G Title Stopping disease-modifying therapy in nonrelapsing multiple sclerosis: experience from a clinical practice Journal International Journal of MS Care 2017;19:11-14 Read the full study: tinyurl.com/stop-ms-drugs

The study The investigator compared the experiences of two groups of people who stopped taking DMDs. The first group consisted of 77 people initially diagnosed with relapsing remitting MS (RRMS) but who had shown no clinical or MRI signs of MS activity for 2 or more years and had been diagnosed with secondary progressive MS. These people were advised to stop taking DMDs (advised group). The second group consisted of 17 people with RRMS who chose to stop taking their DMDs (chose group). On average, the advised group were older than the chose group (61 vs 49 years), had a higher level of disability (EDSS 6 vs EDSS 2), and had been taking DMDs for a longer time (11 vs 7 years). People in both groups had MRIs and neurological assessments at the time of stopping DMDs and were monitored for recurrence of MS activity (relapse or MRI lesions) for at least one year after.

The results 12% of those in advised group and 59% of those in chose group had recurrence of MS activity, within 2 years of stopping treatment. In the advised group, four people had a relapse while five had new lesions on their MRIs. Age was the only identifiable difference between those with and without recurrence of MS activity. Those with recurrence of MS activity were slightly younger (average age 56) than those without recurrence (average age 61). There was no difference in disability scores (EDSS) between those who did or did not have MS activity recurrence.

What does it mean? If you are older and have been free of MS activity for at least two years and stop taking a DMD, you will have a low likelihood of further MS activity. However, if you are younger with RRMS and choose to stop taking

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your DMD, your likelihood of having further MS activity will be higher. Before you make this decision it would be worth talking to your MS team who may suggest trying an alternative DMD. This small study carried out in a single MS clinic in the United States provides preliminary data to suggest who can safely stop taking a DMD, but also highlights the lack of research in this subject. A study which is about to start in the United States will be following the impact of stopping treatment in people older than 55 who have been taking DMDs and have had no relapses or new lesions for five years or more; the target is to recruit 300 participants, who will be randomly allocated to either continue or discontinue their DMD. Participants will be monitored over the two years of the study. This study will provide further data to help people with To find out more about MS and their MS teams recognise when it may secondary progressive be appropriate to stop MS visit treatment. mstrust.org.uk/

spms

I N FO R M AT ION YOU C AN TRUST

Knowledge is power For 20 years the MS Trust has provided free, evidence-based information for anyone affected by MS – via our enquiry service, our printed publications, and, increasingly, our online and social media resources. We hope to help people understand more about their condition, consider their options and work effectively with their MS teams. On the following pages we introduce some of the members of our award-winning team and some of the people they’ve helped

Ali, Information Officer

Simon, Information Officer Providing good, reliable information has always been at the heart of what the MS Trust does. Much has changed since we appointed our first information officer in 1997. But the need for a source of trustworthy, impartial information is as true today as it was in then. In 1998 we received 288 enquiries, with the majority coming from health professionals asking about issues raised by the people they were seeing. In 2016 we answered over 3,000 enquiries for the first time, with more than 70% coming directly from people living with MS and another 20% from their family or friends. Although many more people now have access to computers or digital devices, two thirds of our enquiries still come by telephone. Many callers have already looked for information online, but the ability to talk through issues is still very important. About one in five enquiries we receive is by email and recent years have seen an increase in the number of questions being posted via Facebook. The range of questions we receive is vast. A call from someone who has just been diagnosed and who doesn’t know which way to turn may be followed by someone who has had MS for many years and is asking about treatment options for a specific symptom. Although our focus is on health information, MS can affect all parts of life and calls can cover work issues, benefits, driving and much more. People sometimes say that they worry that their question isn’t important enough or appropriate for the MS Trust. But whatever your concern, give us a call on 0800 032 3839 or email infoteam@mstrust.org.uk and we’ll see how we can help.

In today’s internet-connected world we have a whole wealth of information at our fingertips, but accessing information you can trust isn’t always easy. At the MS Trust we pride ourselves on providing practical, evidence-based information, online and in print. In 2016 we sent out over 50,000 free MS books, factsheets and DVDs, covering everything from disease modifying drugs to things you need to think about if you’re considering starting a family. Meanwhile our website mstrust.org.uk continues to grow. It now has over 7,000 pages and last year received over 1 million visitors. People rely on our accessible, evidence-based information, but also our user-friendly guides to complicated subjects. MS Decisions, our tool for thinking about treatment options, has proved particularly popular, and has been highly commended by the British Medical Association

Why I love the MS Trust We contacted the MS Trust when my first neurologist told me I had MS and then told me the appointment was over, with no information on what I was supposed to do. The MS Trust were amazing and gave us so much information and help. I’m now with a specialist MS team after their advice and would highly recommend them. Thank you for everything. Claire, Salisbury

Open Door May 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

Janice, Information Officer There is a huge amount of research into MS being published every week. However much of it isn’t easily accessible or even understandable by people who aren’t part of the scientific community. At the MS Trust we believe that knowledge is power - the better you understand your MS, the better you can manage it. So we run a regular search for interesting and relevant research articles relating to multiple sclerosis using Medline, a specialised search engine for medical journals. When we find research we think is particularly notable, we write an accessible summary, and include links to further reading on any issues it raises. This research update is published on our website at mstrust.org.uk/research-update. On this page you can also sign up for a free email, which will send the latest research direct to your inbox!

The MS Trust is proud to be accredited by the Information Standard. This demonstrates our commitment to producing trustworthy health and care information and recognises the quality of our internal editorial processes.

Helena, Engagement Officer

Why I love the MS Trust The MS Trust Facebook page has helped me a lot. It has everything you need to know about MS. It’s nice to know there is a place for me as I recently got dignosed with MS and I never knew there were online forums or blogs. I don’t feel so alone now I know there is a place i can look for the information I require. Larissa, London

How we find the information we need is changing fast. Only ten years ago you might still have gone to your local library if you needed to look something up. Five years ago you might have turned to Google to search for details about an unfamiliar drug or symptom. These days we find that more and more people’s first port of call is social media, to find real people discussing the issues that matter to them. At the MS Trust we know that we have to make our info available in the ways that suit people with MS. So today the MS Trust isn’t just a brilliant, extensive, evidence-based website. We also have a lively, regularly updated Facebook page (facebook.com/mstrustuk), a thriving Facebook community (facebook.com/groups/multiplesclerosistrust) and you can find us on Twitter, youtube and a whole range of other social media channels. Every day we share the latest MS news and research, practical tips on managing symptoms, real-life MS stories and opportunities to get involved with our work. We also produce a regular MS Trust news video that rounds up all the latest developments in a three minute clip. Articles we post frequently generate a lively debate among the community, relating the latest news about an MS drug, therapy or symptom to their own experience - adding an authentic, real-life dimension to our evidence-based information

Open Door May 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust

What do you need to know? If you have MS you’ll know it can be a very complicated disease. There are a number of different types of MS, it comes with a whole range of possible symptoms, there are a growing number of treatments and there lots of different avenues of research. No two people experience MS in exactly the same way. This complexity is reflected in the range of enquiries we receive. In 2016 we answered over 3,000 individual questions for the first time, over 70% of which were from people with MS. These covered a whole range of issues, as itemised in the chart below. Driving and transport

Help with finding info

Equipment MS care

Housing

Research Symptoms Work-related issues Alternative therapies General questions about MS (eg cause, prevalance) Diagnosis Non disease modifying drugs

Stem cells

MS services (for example, who is my MS nurse?)

Disease modifying drugs

Financial issues

Other

Why I love the MS Trust A member of our team has MS and I phoned the MS Trust for advice and information and they were absolutely brilliant. They give fantastic advice and point you in the right direction. If you need support of any kind, don’t hesitate to pick up the phone. These people do incredible work. Now i know there is a place I can look for the information I require. Joanne, London

Can the MS Trust help me? MS can affect you in all sorts of ways, and can have all manner of consequences. Whatever your question, no matter how big or small, the MS Trust is here to help. Our team of experts are here to listen and help you find the answer to the questions that matter to you.

• • • •

Call us: 0800 032 38 39 (Monday to Friday, 9-5pm, excluding public holidays) Email us: infoteam@mstrust.org.uk Join us on Facebook facebook.com/mstrustuk and facebook.com/ groups/multiplesclerosistrust or join us on Twitter @mstrust And of course you can still write to us! Multiple Sclerosis Trust, Spirella Building, Bridge Road, Letchworth Garden City SG6 4ET

Open Door May 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

F UN D IN G M S NURSES

Invaluable support The MS Trust and University Hospitals of Leicester NHS Trust are working together to make a difference for local people living with MS with the recruitment of the first new nurse placements in the MS Trust’s Specialist Nurse Funding Programme. Open Door went to Leicester to speak to Allison, one of the existing MS nurses, and Jon, who has been living with MS for almost ten years, about the difference the new nurses will make Allison the MS nurse’s story I’m the MS specialist nurse in Leicester, I’ve been here for 14 years now. We have 1,600 people with MS who are known to us in Leicestershire. There are currently two of us MS nurses here, one of whom is part-time, and there are just too many people to help. We deliver a really good service on our helpline. When we did the MS Trust’s GEMSS service evaluation we found that we had a response rate of 98%, which is really good. There are people you can’t always get back to – you have to leave a message. But we’re nearly 100%. But we’d really like to see people more in the community. Our home visit rate has dropped over the years, partly because of the new disease modifying drugs coming in. These are a really important for people with relapsing remitting MS. It’s vitally important that we support and monitor them. But it means that people with more progressive MS have lost out because we haven’t been able to cover them so well. Our time isn’t infinite unfortunately. We’ve been really lucky to be chosen by the MS Trust to receive new nurses. Not only are they part funding nurses, they’ve helped us put together the business case for them, which has been completely invaluable. We’re hoping the new nurses will help us see more people in the community, actually set up community clinics, which is something which would transform our service. We have lots of people on the outskirts of the county who can’t come to the central hub in Leicester for clinic appointments. It’s too far, there isn’t easy transport. With the new nurses we will be able to set up clinics in Loughborough, in Hinckley, in Coalville. This has worked really well in the two clinics we’ve set up elsewhere.

The MS Trust has been completely supportive of me, right from the very early days. I became an MS nurse in August 2002. Like all MS nurses I went on the MS Trust foundation course and it was just brilliant. It was so important. You get a week’s worth Find out how our of training on that course, but it feels like a GEMSS evaluation year’s worth of information consolidated project helped MS into a week. services show their value The information you get from the MS mstrust.org.uk/ Trust is also fantastic. They have excellent gemss books we use on a daily basis and give to people with MS. The annual MS Trust conference is great too – I’d love to go every year, but we have to do all our training in our own time and I can’t always do it. Being involved in the MS Trust’s GEMSS project helped us evaluate our service and was so important for us. It was fantastic how it highlighted how we were working hard and seeing a high number of people. We were very productive even though we were spread thinly and it made it obvious to the hospital that extra nurses were really important. We wouldn’t be getting them without it. The MS Trust has supported us every step of the way and now with the nurse funding programme they have given us an extra push. The hospital was impressed that a national charity like the MS Trust was getting involved and I think that makes a big difference. The process was brilliant. I would thoroughly recommend that other MS teams apply to the fund. I can’t thank the MS Trust, and all the people who support the MS Trust, enough. It’s so important – it means that MS nurses have got the best knowledge possible and can always be there for people living with MS.

Open Door May 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust

Jon’s story I’m 43 and I’ve been diagnosed with MS for going on 10 years. I’ve been in a wheelchair for two and half years. I no longer work. I’ve gone into secondary progressive MS, but at the moment I’m pretty stable and happy. Which is really good. The first symptoms where I thought something might be wrong were about 12, 13 years ago, I lost feeling all the way down my left side. They classed it as a one-off thing, but we did discuss the possiblity of MS. After a second episode of numbness a while later they diagnosed it as MS. I was really relieved, which some people found strange. I was in hospital for a week, they did an in-depth investigation with an MRI scan. That was when I first met my MS nurse. I was scared stiff of meeting them because I didn’t know what it was all about. But they turned out to be really, really good. They went through the emotional side of it with me. Because I didn’t really know anything about MS, so they sat me down and said, “this is what could possibly happen”. Unfortunately a lot of it has happened. But they’ve been there with me when things have happened. They’ve been with me every single step. And they’re still here. You ring them up, they may not be able to get back to you that day. But it will be within three days. Some times you get the phone call in the evening. They’re still working for us. You tell them what’s going on and they talk you through it. I see them officially once a year, but unofficially once every six months, or whenever I need to see them. Once one of the nurses actually came and knocked at my door because she did a clinic round the corner from where I live. She wanted to see how I was. I thought that was quite nice! She came and had a cup of tea and asked me how everything was going. They’ve always been there. Even when you don’t need them, it’s good to know they are always there. They’ve offered emotional support. I needed that. From being a hardworking dad of two and enjoying life to someone with secondary progressive MS, I definitely needed that. They talked me through the medical side of it, the different treatments I’ve tried. They’ve done everything to help prepare me for what MS might be like for me. If I have any questions or worries, they find things out for me. They’ve always come up trumps. I quite like MS nurses, you might have noticed! They’ve offered to help my family, but my children are a bit shy. They prefer to hear from me. But the nurses

I don’t know where I’d be without an MS nurse to be honest. I’d be less happy with how I am, definitely. I don’t know if I would have accepted it as well.

showed me a way of talking to the kids when they were little. They’ve now grown up with it. I wouldn’t have been able to do that without the support of the nurses. If I hadn’t had a nurse? My point of contact would have been a GP. And GPs only go so far, you know. So I think I would probably end up in A&E. With a doctor who’s very busy. And what he says often goes over your head, and you don’t have any time to understand anything. The questions come afterwards, when you’ve had time to process things. That’s when the nurses are there for you – when you have questions or a problem to do with MS. And not everything in life is to do with MS of course. I ring them up and say can we meet or whatever, and it was always yes. They do an outpatients clinic where I live so I don’t have to come to Leicester. It’s always within a couple of weeks. Which is great. If I’ve been hospitalised they’ve always come within a day to find out what’s going on. I don’t know where I’d be without an MS nurse to be honest. I’d be less happy with how I am, definitely. I don’t know if I would have accepted it as well. Definitely not. They’ve been great for finding out the questions that do come as things progress, if things progress. GPs or doctors don’t have the time or the answers. From working myself - I used to be in charge of 50 people - I don’t see how one and a bit nurses can be responsible for1,600 people with MS. They need more support definitely. New nurses will make a huge difference for the patients. And for the existing nurses. As I understand it, The MS Trust doesn’t get funding from government or the NHS. So these new nurses have been funded by ordinary people running marathons, doing bake sales, raising money in any way they can. I’d like to say thank you very much to all of you. It will make such a difference. You could go through MS alone. Or you could go through it with someone on the end of the phone who you can rely on. I would always take the second option. For people to be funding this to help people like me is amazing.

To support the MS Trust’s nurse funding programme visit mstrust.org.uk/ nurses

Open Door May 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

PR AC T I CAL T I PS

Staying active Have the feats of Paralympic champions Kadeena Cox and Stephanie Millward inspired you to lace up those trainers and get fit? On this page, specialist neurophysiotherapist Liz Betts, who helped develop the exercises on the MS Trust website, offers some advice on staying fit when you have MS. On the facing page we hear from two people with MS who have benefitted from a more active lifestyle “Try to make exercise part of your daily routine” There has been a dramatic change in attitude when it comes to exercise and MS. I trained as a physio in the 1970s and back then we were telling people not to exercise because there was a fear it might make symptoms like fatigue worse. Now there is evidence to show that exercise does in fact help with the maintenance of MS symptoms: fatigue has actually improved when people are on an exercise programme, and it can also help with things like weakness, balance and spasticity. There’s the feelgood factor with it too, as the release of endorphins will improve your general wellbeing. I try to give people the confidence to give exercise a go. It doesn’t have to mean going to the gym or going out for a run; it could be something as simple as housework or a walk. It’s all about making it easy; making it part of a daily routine. If you are in a wheelchair, while you are watching the TV you could use advert breaks to do some exercise: why not try some arm jogging while you are watching the meerkats? Or some balance work when you are putting the kettle on? Just a minute of arm jogging with a bit of gusto will improve heart rate and get you breathing deeper. There is growing evidence to show that doing short bursts of exercise, rather than one great long burst, will improve fitness, so for people with MS, when fatigue is a factor and heat can be a factor, exercising like this can really help. If you want to get fit but are not sure how to get started, the exercises on the MS Trust website and the Move it for MS DVD with Mr Motivator are a good way to begin. My advice would be to start slow and start small

- don’t think you’ll be like Kadeena Cox immediately! If you are physically able to, there’s no reason why you shouldn’t join the gym or a go to an exercise group: Pilates, Tai Chi and yoga are all really good for core strength and balance, but make sure you inform the instructor about your MS, as you might need to sit out the odd thing. If you haven’t done exercise for a very long time, it’s always best to speak to your GP first to check there aren’t any underlying problems. I have seen many people with MS benefit from regular exercise over the years. One of the guys featured on the Move it for MS DVD has walking difficulties, but he still tries to exercise every day. He once said to me: “You get diagnosed with this and lots of doors shut to you, but lots of other doors open.”

Five top tips for staying active 1. Don’t overdo it. Listen to your body when it tells you to stop. 2. Everyone can feel lethargic in hot or humid weather, but with MS the effect is often exaggerated. Try using a fan or a cold water spray when exercising or have a cool bath before you start. 3. Remember to breathe! It might sound obvious, but you’d be surprised by the number of people who hold their breath when they exercise. 4. Have a trigger to remind you to exercise. Maybe when the adverts or weather come on the television, or when waiting for the kettle to boil. 5. Choose an exercise that works for you. Everyone is individual and some people like to exercise in a group setting - in a class or as part of a team. Others like to work individually whether that is at the gym, swimming pool or at home.

Open Door May 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust

Ann was diagnosed with relapsing remitting MS in June 2014, aged 51. To stay active, Ann attends a deep water exercise class I had my first symptoms in September 2012 just before my 50th birthday. I had numbness in my neck which extended to my fingers and into my right leg. I went through a multitude of tests before diagnosis. Eventually MS was diagnosed. I first experienced water exercise over 20 years ago when my children were small. After diagnosis I felt sure that exercising in the water would help my mobility so tried a shallow class, with my feet on the pool floor. This was great. I could keep up with the other class members and work with the support of the water. I didn’t have to worry about losing my balance or falling over. However, as soon as I left the pool I struggled to walk and didn’t feel safe driving. I changed to the deep class which I find suits my needs much better. I can exercise for a full 45 minutes alongside folks of all ages and abilities. It is nice to feel on an equal basis with the other participants. The class is not specifically for those with MS and the exercises can be adapted to suit the individual, whatever issue they may have. I would encourage I work in an upright position in deep anyone to do a deep water wearing a floatation belt. As water class: it will leave well as supporting you, the water you feeling invigorated, not takes away the gravitational effect on the body giving you a feeling of exhausted and is a great weightlessness. The buoyancy provides social activity. support for my weaker limbs and I find it much easier to work in water than on land. I have noticed an improvement in my balance and I am able to change direction as I walk without feeling quite so wobbly. Other people have commented that I seem to be moving with more confidence and I have recently started walking a mile a day to increase my fitness level and sense of wellbeing. I find I can only walk for 20 minutes before becoming decidedly wobbly, whereas I can keep moving for twice as long in the water. I’m not a heat lover and the water keeps me cool as I exercise, however hard I work. I would encourage anyone to try a deep water class: it will leave you feeling invigorated, not exhausted and is a great social activity. The experience I have had has been very positive and the instructor recently shared the benefits of water exercise at an MS awareness day on the Isle of Wight: ‘We exercise in water to improve our function on land’. I think this sums up my experience beautifully!

Carol was diagnosed with MS in 2003. To stay active, Carol attends weekly Zumba and Pilates classes I was diagnosed with MS in May 2003 following muscle weakness in my right side causing problems with mobility and fine motor skills. It is likely, however, that I had been experiencing symptoms since I was about 17: fatigue in afternoon classes and an episode of dysphasia where I knew what I wanted to say but could not get the correct words out. I have not always been someone who enjoys exercise. When I was at university I was My advice to other people friends with people with MS looking to get who were training to be PE teachers fit would be to choose and they called me something you enjoy! a physical illiterate as I have hopeless hand-eye co-ordination. Of course it may have been down to MS! In 2003, after my diagnosis, I decided that I needed to be fitter in order that I might hopefully recover from any subsequent relapse quickly. I started swimming as I could do that whilst my muscles were uneven and I believe it helped rebuild my strength. A physiotherapist advised me to start Pilates to build up my core strength and I try to do this once a week. I believe it has helped with my balance and posture. I also enjoy Zumba. In my current class the teacher knows that I will do the low impact option; my aim is to keep moving for 45 minutes, not to do perfect moves! My advice to other people with MS looking to get fit would be to choose something you enjoy! Don’t wait for someone else to go with you. My experience is that most people are friendly and everyone is more concerned with what they are doing to look at and judge other people. Do what you can and know your limits; it’s no good overdoing it and being unable to do anything later or the following day!

For more advice on staying active and exercises to help improve balance, posture and strength, visit mstrust.org. uk/a-z/exercise.

Open Door May 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

FOCU S O N

Driving with MS After an MS diagnosis you’re bound to have worries about how the condition might impact your independence and freedom: will you still be able to do those ‘normal’ everyday things you always have done? One of the most common questions that our information team gets asked is: ‘Can I still drive?’ For most people with MS the answer is ‘Yes’, but there are some things you need to be aware of Which MS symptoms could affect my driving? Everyone’s experience of MS is different and symptoms can vary considerably from person to person. This makes it tricky to come up with a definitive list, but symptoms which might affect driving include numbness or tingling in the hands and feet, visual problems, fatigue, spasms, cognitive problems and weakness. This might seem like a long list, but it’s important to remember that most people with MS are happy, confident and safe drivers. Things like automatic transmission, power steering and height-adjustable seats – features that many modern vehicles now have – can make a difference, and it’s also worth considering making simple adjustments to your normal routine, not driving at night, for example.

Do I need to tell the licensing agency about my MS? Yes – and this is a big YES. You must tell the licensing agency that you have been diagnosed with MS, and you must also inform them if your MS gets worse. In England, Scotland and Wales that means telling the DVLA (Drivers and Vehicle Licensing Agency), and in Northern Ireland you will need to tell the DVA (Driver and Vehicle Agency). You can be fined up to £1,000

if you don’t tell them about a medical condition that affects your driving and you may be prosecuted if you’re involved in an accident as a result, so it is not worth the risk. If you need adaptations to the controls of your car, the law requires this to be specified on your licence too.

What happens next? They will send you a questionnaire to assess any impact of MS on your driving performance and may need to contact your doctor about your condition. In some instances you may have to be examined by a local medical officer or specialist, or have to take a driving assessment, eye test or driving appraisal. If there is no medical reason to prevent you driving, you will be allowed to keep your licence, but quite often the licence will need to be renewed every three years. Be warned, this can be a To contact the DVLA visit lengthy process.

Do I need to notify my insurance company? Yes, you will need to tell them about your MS and if your car has any adaptations.

Open Door May 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust

gov.uk/contact-the-dvla or call 0300 790 6806 To contact the DVA in N Ireland call 0300 200 7861

What should I do if I need to have my vehicle adapted? The following organisations and charities can offer you help and guidance when it comes to accessing adapted vehicles: Forum of Mobility Centres A network of independent organisations who offer information, advice and assessment to individuals who have a medical condition which may affect the ability to drive or use a motor vehicle. The centres are listed in the map of MS services on our website: mstrust.org.uk/map. Motability A national UK charity that helps people in receipt of the higher rate Mobility Component of DLA (Disability Living Allowance) or PIP (Personal Independence Payment) to lease an adapted vehicle, including cars, scooters and powered wheelchairs. See motability.co.uk. Motoring with multiple sclerosis Information on choosing, adapting and using a car from Rica, a charity providing consumer research and information for people with a disability. See rica.org.uk/content/motoring-multiple-sclerosis. The Bike Experience The Bike Experience is a charity that teaches and advises motorcyclists who have been disabled how they can ride again. The charity has helped hundreds of riders, all with differing levels of experience, get back on a bike in a safe, controlled and fun environment. See tbex.co.uk.

Am I exempt from paying vehicle tax? If you receive the higher rate of the mobility component of Disability Living Allowance (DLA) or the enhanced rate mobility component of Personal Independence Payment (PIP) you can apply for free vehicle tax. If you get the standard rate mobility component of PIP you can apply for a 50% reduction in vehicle tax.

What is a Blue Badge and how can I get one? The Blue Badge scheme provides parking benefits for people with a disability who travel either as a driver or a passenger. You can apply for a Blue Badge at: gov.uk/ apply-blue-badge, and your application will then be sent to your local council for a decision. If you do decide to give up driving, it’s not the end of the world, and there’s no reason why you can’t still visit the places you want to and do the things you love. You can get a bus pass for free travel if you’re disabled, and if you’re eligible you can get up to a third off rail tickets by applying for a disabled person’s railcard.

“I don’t think I could go back to foot pedals again” We asked people on the MS Trust Facebook page for their advice and experience of driving with MS. Here are some of their comments. . . “I went to the Queen Elizabeth Foundation in Surrey. They tested my reactions and strength and advised me on adaptations. I now use hand controls” – Julie “Push and pull hand controls on both cars I drive. About 10,000 miles a year, on all roads and any time of day. I also ride a motorbike once a year thanks to The Bike Experience” – Tim “I drive an automatic and this has really helped as I use my car to get to work. I try to hold back a bit from the car in front and don’t rush to get anywhere” – Gillian “Two years ago I began to notice being hit by extreme tiredness whilst trying to concentrate. I could literally fall asleep at the desk with hardly any warning! It was during a familiar journey in the middle of the day that it happened while driving. I had slept well the night before and hadn’t felt tired in the morning, yet after about half an hour I somehow ended up on the wrong side of the road nearly killing myself, my son and the driver of an oncoming car. Miraculously, everyone was unhurt. I gave up driving immediately. I was 44 and had been driving for all my adult life. Yes, a little bit of independence had been lost but that is infinitely better than having to live with the death of another person” – Judy “I have swapped to automatic and SUV so I have the height. Getting in and out of usual cars was too hard for me and changing gear in heavy traffic was so bad on my legs and my feet would go numb” – Mel “I find cruise control a wonderful help on long journeys. I also find that wearing the anti-glare glasses at night really helps” – Caroline “I have just been awarded PIP ‘ongoing’ so get to keep my Motability Skoda (Hettie the Yeti) and her hand controls. I would be lost without it and although it took me Got a question about ages to literally get to grips with using driving and MS? the hand controls, Call our free enquiry service I don’t think I could on 0800 032 38 39, email use foot pedals info@mstrust.org.uk, or visit again even if the symptoms in my feet mstrust.org.uk resolved” – Jenny

Open Door May 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

GE T I N VO LV E D

Grand plans When Ruth Winden signed up to take part in a Grand Canyon Trek for the MS Trust, she didn’t realise how much of a positive focus it would bring to her life My husband Paul was diagnosed with primary progressive MS in 2015. It was a real blow to him and to us as a family. After a lot of uncertainty and sadness, and really feeling like there’s a big black hole, I felt I needed to do something positive. I saw that there was a trek to the Grand Canyon and I got extremely excited because I’ve always wanted to go there. It ticked all the boxes: I will raise money to support a charity that has been wonderful, I’ll get fit and I’ll have an adventure. I always thought one day my husband and I would go to the Grand Canyon together and sadly that’s not possible, but I have his blessing. It’s helped me get back into the right frame of mind. To be honest, I didn’t realise it would take over my life in such a good way. There are two different sides to it really. One is the training. I’m in my mid-50s and I used to be very sporty, but like so many of us when we have children and busy working lives, our health suffers a bit. That was part of the reason I wanted to do it, to have a reason to get out of the house and go walking. The other side is the fundraising. I am blessed with a wonderful network of co-workers, clients, family and friends who have supported me. It’s a real mix of people and everyone has been generous. I’m a career coach and so I offered 20 sessions at a discount for a donation to the charity, which has been a great way to meet people and raise funds.

I’m raising money to support a charity that has been wonderful, I’m getting fit and I’m going to have an adventure.

Although from the outside it looks like it is more work and extra pressure, since I’ve started fundraising it’s given me a lot of energy. I get a lot back from it in terms of people’s kind wishes, support and questions. It makes you realise that there are people out there who will step in and help. That optimism helps me to cope with things and I have no regrets. I have got to know my fellow trekkers in a Facebook group and that’s been wonderful. By the end of the trek I think we’ll be good buddies. That’s one of the great things about doing this: you are not alone. It’s humbling to see how much effort people put in to fundraising. I know that the MS Trust is already planning on funding new MS nurses, so I know exactly where the money’s going, which is great. I’ve been warned that this is addictive: once you start doing these big fundraising projects apparently you then can’t wait to do the next one! So who knows what I’ll be up to next year! Listen to Ruth’s full interview at mstrust.org.uk/ruth-winden

Ruth and her husband Paul

Join Team MS Trust for the London-Amsterdam cycle If like Ruth you would like to take on a challenge to help people with MS, we have a fantastic opportunity to join up to 50 other MS Trust supporters cycling from London to Amsterdam next year from 6 to 10 June. We will be the Official Charity Partner for this event and we’re hoping it will be as successful as our 2016 London to Paris ride, which raised £113,000 to help us provide vital information and support MS services. With over a year to go, there’s plenty of time for training even if

you’re not an experienced cyclist. We will provide lots of training advice as well as fundraising support to help you reach the £1,600 sponsorship target. Expect long days in the saddle, but the picturesque (mostly flat!) countryside, camaraderie with your fellow MS Trust riders and the sense of achievement when you reach Amsterdam will make this a really memorable adventure. If you can’t take part yourself, To find out more we would be very grateful if you call Laura on could help us spread the word by telling your friends and family, 01462 476707 or visit displaying the enclosed poster mstrust.org.uk/ or sharing the event on social L2A media.

Open Door May 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust

Grab your cape... ...and join us for the brand new Superhero Tri on Saturday 19 August at Dorney Lake, Windsor. Superhero Series founder, Sophia Warner, tells us why she wanted to set up an event that was open to everyone I have cerebral palsy and was the first disabled person to enter the London Triathlon back in 1998. Even as an elite athlete I found it hard to keep up and had to ask other participants for help. I’ve also taken part in fun runs where the roads have reopened before I’ve had a chance to finish. The idea behind the Superhero Series is simple. To create fun, gutsy events where people with disabilities call the shots and don’t have to worry about cut-off times or equipment restrictions. If you want to use your The idea is to powered wheelchair or need floats in the water, we make it possible. As create fun, gutsy far as I’m concerned, anything goes. events where people For my first event I’ve chosen with disabilities call triathlon challenges because the shots swimming, cycling and running are the most popular disability sports. You can do a whole triathlon if you wish, but you can also choose to do just one or two stages as a relay with disabled and non-disabled family and friends. Paralympic champion Kadeena Cox will also be taking part on the day in our special Celebrity Superhero Tri. I know first-hand what a hugely positive impact sport can have on a person’s life and I believe everyone should have the chance to get involved. I hope you’ll sign up and take the plunge!

The MS Trust is very proud to be a part of the Superhero Tri and we’re looking for teams of two or three people to take part in the team triathlon. You can pick the distance that suits you. Call us on 01462 476700 to find out more or visit mstrust.org.uk/superhero

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 MS Circuit Challenge Join our fun family day out at the Goodwood Motor Circuit on 21 May. Cycle 50 miles around the track or join our fully accessible ‘by any means’ challenge.

mstrust.org.uk/goodwood 20 in 20: London tours A day of guided walking or cycling tours in the City of London on 25 May, including tours tailor-made for wheelchair users or people with visual impairments. From £20 for an hour-long tour.

mstrust.org.uk/20in20 Scottish Coast to Coast Canoe Challenge Take in the fresh air and spectacular scenery as you paddle and sail 60 miles along the Great Glen Canoe Trail from 6-10 September.

mstrust.org.uk/canoe British 10K London Run Join our team on 9 July. You don’t need to have any previous running experience and we offer discounts for groups of 6 or more.

mstrust.org.uk/british10k RideLondon-Surrey 100 100 miles on closed roads along a route made famous in the London 2012 Olympics. Contact us before 24 May if you’d like one of our last few places for this challenging ride on 30 July.mstrust.org.uk/

ridelondon

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

Open Door May 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

15 M IN U T E S W ITH MS TRUST SUP P ORT ER

Maureen Heald-Gledhill Maureen has supported the MS Trust for many years, having lived with MS for over 40 years herself. Last autumn, she decided to do a skydive – aged 72 – to fundraise for the MS Trust and she has also left a legacy gift to us in her will

When were you diagnosed with MS? I was diagnosed in 1974 when I was 30, so I have lived with MS for 43 years. My first symptoms were eye problems, but nothing could be found wrong with my sight. Then at Christmas I felt numbness in my left side. A consultant visited me on New Year’s Day (those were the days) but I wasn’t given a diagnosis, although I found out later that my parents were told! It was 2-3 years later when seeing the same consultant and he assumed that I knew.

How did you deal with your diagnosis?

Eventually, it happened! Nerves didn’t come into it. After all, the skydiving company are professional people and I was strapped to a very handsome young man (you take what chances you can get at my age!). The experience was amazing, thrilling, fantastic, but also the scariest thing I’ve ever done. The parachute opened at 5,000 feet and the feeling is incredible. The next worry was landing but that was easy. I was in safe hands.

I was told I had relapsing remitting MS and that I should do as much as I could before things progressed. I drove home from the appointment in shock. Followed by complete denial. I was working in London and had no time for this thing trying to take control of my body. Shortly after, my GP suggested hyperbaric oxygen treatment at Exeter, where I discovered my local MS therapy centre. At last! People who could make sense of my symptoms and understood what I was going through. They encouraged me to stay as active as I could within my own limitations.

What was your experience of fundraising in this way like?

Why did you want to support the MS Trust’s work?

I would encourage everyone to do it. If I can, then anyone can! It really is such an amazing experience, plus I raised £1,065 for MS Trust who have always been there for me.

All my information came from MS Trust. I cannot thank them enough. Hence my recent skydive to raise funds.

What was it like taking part in a tandem skydive? Were you nervous? I went along to support the MS Trust’s Jump in June one year and by the time I left, I had said I would take part next time. After all, walking was my problem so jumping from a plane would be a piece of cake. Unfortunately, two weeks before I was due to jump, I fell and broke my right wrist having never broken anything in my life. Not even a promise as far as I know. So the jump was postponed, and was then pushed back a further three times due to poor weather conditions. Was someone trying to tell me something?

My immediate family have always been immensely supportive, allowing me to do the things I wanted to do without interference. Skiing, fast cars etc. I think I always terrified my poor Mum! MS has never stopped me and should not stop anyone from living life. For me, MS is incidental, but I know I am lucky compared to some.

What would you say to someone with MS who was thinking about taking on a challenge like this?

You have also decided to leave a gift to the MS Trust in your will – what made you decide to do this? A legacy to MS Trust is something I can do for future MS sufferers to benefit from long after I am gone. Why would anyone with MS not want to leave something to help others like them? We To find out more about all have to do our bit and look out for one legacy giving call another. I know jumping out of a plane is 01462 476700 or visit not for everyone, but including the MS Trust in your will – no matter how big or mstrust.org.uk/legacies small the gift – is something that we can To find out more skydiving all do to make a difference.

visit mstrust.org.uk/jump

Open Door May 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust

Information from the MS Trust For a full list of resources or to read online visit mstrust.org.uk/pubs For people who are newly diagnosed with MS 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 • Sources of information and support • Publications for people with MS from the MS Trust MS-448

Books MS and me: a selfmanagement guide MS-318

Talking with your kids about MS MS-316

The young person’s guide to MS MS-137

The kids’ guide to MS MS-286

Disease modifying drug therapy MS-90

Sex & MS: men MS-356

Primary progressive MS

Secondary progressive MS

Managing your bladder MS-429

Sexuality & MS: women MS-213

Living with fatigue MS-204

Falls MS-249

MS-352

MS-458

Need to talk to someone about something to do with MS? Call our enquiry service 0800 032 38 39

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Address Postcode Email The MS Trust and our trading company value your support and promise to protect your privacy. To read our policy please go to mstrust.org.uk/privacy

Please return to MS Trust, Spirella Building, Bridge Road , Letchworth Garden City, Herts SG6 4ET 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 Registered charity no. 1088353

Open Door May 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

Making plans when you have MS isn’t always straightforward. But MS Decisions can help you weigh up your options and make the choice that’s right for you.

the independent guide to MS drugs that’s designed to work for you

To find out more visit msdecisions.org.uk or speak to your MS nurse

Providing information you can trust, supporting the MS specialists you need Call 0800 032 38 39 or visit mstrust.org.uk