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Open Door Quarterly newsletter of the MS Trust

August 2018

“When I met my MS nurse everything started to make sense� A look back on the first year of our Specialist Nurse Programme

Also in this issue 15 minutes with The Disabled Chef James Coke

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Introducing our Miles for MS superstars

Top tips for a stress-free summer holiday

Ask an expert: Coping with fatigue

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Welcome to the August issue of Open Door Time really does fly and I can’t believe it’s been over a year since Jon Maisey, the first MS specialist nurse to be recruited and funded as part of our Specialist Nurse Programme, started in Leicester. As you will read in our interview with Jenna on page 12, nurses like Jon make a massive difference to people living with MS. As a charity we are proud to support, train and fund them. Happy one year anniversary Jon! But of course our work with MS nurses wouldn’t be possible without our incredible supporters. I was lucky enough to meet some of them when I took part in the London to Amsterdam cycle ride back in June. It was an

amazing and truly humbling experience, and such a pleasure to hear the reasons why people wanted to fundraise for the MS Trust. A massive thank you to everyone who took part and welcomed me on my first fundraising challenge. The first of many, I hope, if my legs can take it. But supporting our work doesn’t have to mean cycling or running. It could be as simple as buying Open Door will a Christmas card (yes, we know it’s only August!). always be free to our Unseasonable as it might seem, you will find our readers, but it costs us £2 2018 Christmas catalogue included with this to produce and post each issue. So have a browse, get those orders in nice issue to you. and early, and help us make a difference for If you’d like to donate to people with MS. cover these costs text David Martin, Chief Executive, MS Trust OPEN44 £2 to

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How we’ve been working hard for people with MS since our last issue Helping people with MS access drugs and treatments Today and every day we fight to ensure people with MS get access to the best care possible. Recently that meant responding to NICE consultations on ocrelizumab for relapsing remitting MS and primary progressive MS, and the use of glatiramer acetate and the five beta interferon drugs (read more about this on our news pages). We responded in the strongest possible terms, and we promise to continue speaking up for EVERYBODY with MS.

Answering your questions about MS MS is a complex condition and impacts on everybody differently, so whether you have it yourself, or are a friend or family member of someone with the condition, you’re bound to have lots of questions. Our Enquiry Service is here for you. We can help you find information to answer your questions about MS, from treatment options and symptoms, to research and accessing specialist services. The service is confidential and if we can’t find the answer, we will direct you to someone who can. Ring us on 0800 032 38 39 or email infoteam@mstrust.org.uk.

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

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Contents 4

News Ocrelizumab decisions for RRMS, changes to how PIP is reviewed, plus the MS Trust to take part in the BBC Lifeline Appeal

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New research on relapses and brain fog, constraint-induced movement therapy, exercise and FES

Helping to bring new MS nurses to Hull We believe that no one should have to manage MS alone, so over the past year, through our pioneering Specialist Nurse Programme, we have been bringing new MS specialist nurses to the areas that need them most. We have already funded MS nurses in Leicester, Lanarkshire and Bradford, and we are now helping to bring new nurses to Hull. This is just the start. We’ll be announcing more sites in the coming months and will continue to work towards our goal of ensuring everyone with MS has access to an MS specialist nurse. Read more about our work on page 12.

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It’s that time of year again! You will find our 2018 Christmas card brochure included with this issue, so why not order today and get one job ticked off the list in preparation for the festive season! Every card sold helps to raise vital funds and awareness. Ho Ho Ho! Find our Christmas shop at mstrust.org.uk/christmas.

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14 Miles for MS

Introducing some of our Miles for MS superstarst

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Sex & MS

A guide for WOMEN

Sex & M S

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Our Information Team has been busy updating our books, Sex and MS: A guide for men and Sex and MS: A guide for Sex & M women. These books look at how MS S A guide fo r W OMand can affect sexuality intimacy, and EN how you can manage these issues. The revised editions can be ordered using the form on the back page or through our website at mstrust.org.uk/shop.

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Ask the expert: fatigue Struggle with fatigue? Occupational Therapist Kate Hayward answers your questions on this common MS symptom

Providing information on sex and MS

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Focus on: holidays Top tips for a stress-free summer holiday

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DESIGN

Invaluable support A look back on the first year of the Specialist Nurse Programme and the difference it’s made to people with MS across the UKk

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Life with MS Why an MS diagnosis inspired Lisa to put pen to paper and write her own book

Selling Christmas cards across the UK

MS TRU

Research update

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Get involved Jim Thompson’s epic trek across the UK, plus volunteering opportunities, and lots of other ways to get involved with our work

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15 minutes with The Disabled Chef James Coke shares some tips for cooking with a chronic condition

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

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News Ocrelizumab approved for RRMS in England and Wales, but rejected in Scotland We’re pleased to report that NICE has approved ocrelizumab (Ocrevus) as a treatment for relapsing remitting multiple sclerosis (RRMS) on the NHS in England and Wales. But we’re very dissapointed that the Scottish Medicines Consortium (SMC) is unable to recommend ocrelizumab for RRMS in Scotland. NICE (National Institute for Health and Care Excellence) has recommended that ocrelizumab can be prescribed for relapsing remitting MS if: • you are experiencing relapses or have MRI evidence of new areas of MS activity, and • you are unable or unwilling to take Lemtrada (alemtuzumab) This reverses NICE’s earlier decision that it did not intend to recommend ocrelizumab for relapsing MS. The MS Trust responded to this decision, arguing that ocrelizumab would be a valuable additional treatment for people with relapsing remitting MS and for the NHS. Jo Sopala, Director of Development at the MS Trust, commented: “We are pleased that NICE has reversed its earlier decision and has now approved ocrelizumab as a treatment for relapsing remitting MS in England and Wales. It further expands the range of relapsing MS treatments by offering a different dosing schedule, a different mode of action, minimal monitoring and a low risk of side effects compared to existing disease modifying drugs.”

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Following a recommendation by NICE, the NHS in England and Wales has three months in which to prepare for prescribing the drug. After that it is expected that the NHS will fund the treatment if a doctor feels it is appropriate. The SMC, however, say that they do not consider ocrelizumab to be cost effective for the NHS in Scotland as a treatment for relapsing remitting MS in comparison to the existing disease modifying drugs. The SMC state that Roche, the manufacturer of the drug, did not present a sufficiently robust economic assessment of the drug’s use for it to be accepted. We anticipate that Roche will continue to work with the SMC with the aim of changing this initial decision. Ocrelizumab has been rejected by NICE as an NHS treatment for primary progressive MS in England and Wales (see story on page 6). We understand that the SMC submission for ocrelizumab for primary progressive MS has been withdrawn.

NICE revises decision to restrict drugs for relapsing MS NICE has published its final decision on the use of glatiramer acetate and the five beta interferon drugs. Avonex, Extavia, Rebif, Copaxone and Brabio will continue to be available on the NHS in England. Betaferon has been rejected and will no longer be available. Plegridy will be assessed separately. The other disease modifying drugs were not affected by this and continue to be available (Aubagio, Tecfidera, Gilenya, Mavenclad, Tysabri and Lemtrada). This is a significant change from NICE’s initial decision in December which recommended just Extavia. When NICE consulted on this decision, the MS Trust responded in the strongest possible terms, arguing that two vital issues - differences in ease of use of beta interferons and safety in pregnancy - had not been taken into account. Jo Sopala, Director of Development at the MS Trust, commented: “We are very pleased that NICE has revised its earlier decision. Our response was considerably strengthened by the views of over 500 people with MS and over 100 health professionals – hearing your views was incredibly helpful, thank you very much for your input! “We remain fully committed to supporting people with MS to get the best and most appropriate treatment for them.” Find out more at: mstrust.org.uk

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

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Do you have a place in the Great North Run?

Captify raises £30,000 for the MS Trust We’d like to thank everyone at Captify’s London office for choosing MS Trust as their charity of the year and working so hard to raise £30,000 in support of people with MS. It was so moving to see how everyone at the organisation got behind the cause after two people there stood up to tell their colleagues how MS had affected their lives. The team organised a music event and fundraised in the office – and some people even climbed Mount Kilimanjaro! “Spending the year raising funds has been an incredibly rewarding experience,” says Project Manager David Wild. “We’re so happy to have made a difference to the MS Trust and we encourage any other organisation wanting to get involved to do the same, as the support we’ve received has been second to none.” We are so grateful to Captify for their incredible and heartfelt support. Could we be your charity of the year? Find out more about how your workplace could fundraise for the MS Trust at mstrust.org.uk/corporate

MS Trust selected for a BBC Lifeline Appeal We are really excited to announce that the MS Trust will be benefiting from the September BBC Lifeline Appeal. The BBC Lifeline Appeal is a 10 minute programme which airs each month on BBC One and highlights the important work of chosen charities. Our appeal will be broadcast on Sunday 16 September. Make sure you check your TV guide as this is

one not to be missed. Please do mention this to friends and family as the more people who watch the appeal, the more awareness and funds we can generate to help people with MS. Do keep an eye on our website and social media for further information nearer the time. Website: mstrust.org.uk Twitter: @MSTrust Facebook: facebook.com/mstrustuk

If you have your own place in the Great North Run on 9 September, you could run for the MS Trust and raise sponsorship to help people living with MS today. As part of the MS Trust’s team you will receive support every step of the way. We’ll be there on the day, with a meeting point after the race where you can meet your friends and family and have a sports massage. If you’d like to join our team, we would love to hear from you on fundraising@mstrust.org.uk or 01462 476707.

Thank you to our London to Amsterdam team

MS Trust was the official charity partner for a London to Amsterdam bike ride in June and we’d like to congratulate our 32 cyclists both for their amazing achievements on the ride and for raising over £75,000! The money raised could help to fund two new MS nurses for a year and will make a big difference for people with MS. Sam Dallimore, who took part in the ride alongside his dad and a friend, said, “It’s been four of the best days of my life. I met new people and made many lifelong friends, all while raising money for an incredible cause.”

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

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NICE rejects ocrelizumab for primary progressive MS in England and Wales The MS Trust is very disappointed that NICE is unable to recommend ocrelizumab (Ocrevus) as an NHS treatment for early primary progressive MS in England and Wales.

NICE acknowledges that there are no disease modifying treatments approved for primary progressive MS (PPMS), and that clinical trials have shown that ocrelizumab can slow the worsening of disability in PPMS. However, they consider that the benefits gained from ocrelizumab treatment do not represent value for money, when compared to the cost of routine NHS treatment currently provided for PPMS. The manufacturer’s proposal to provide ocrelizumab to the NHS at a reduced price while a clinical trial is ongoing was also rejected. The decision was open for consultation until mid July to which the MS Trust responded. The NICE appraisal committee met again this month to review the comments received and further evidence from the manufacturer. NICE expects to

publish its final decision in October 2018. Jo Sopala, Director of Development at the MS Trust, commented: “We are very disappointed by this initial decision, but not surprised; we knew this was going to be a tough fight and will continue to make the strongest possible case for NHS approval of ocrelizumab for primary progressive MS. People do everything they can to minimise the impact PPMS has on their lives, but they are all too aware that, at the moment, there is nothing that will slow down the progression of their disease. We are pleased that NICE recognises the innovative nature of ocrelizumab and urge NICE, NHS England and the manufacturer to find a solution which enables those eligible to access this drug as soon as possible.” In Scotland the SMC (Scottish Medicines

Consortium) was due to carry out an appraisal of ocrelizumab for PPMS. However we understand that Roche, the manufacturer of the drug has withdrawn the submission.

To find out more about this news, visit mstrust.org.uk/news

Government announce changes to how personal independence payment (PIP) is reviewed People receiving the highest level of personal independence payment (PIP) and who have conditions that are not expected to improve will in future only need a ‘light touch review’ every ten years, according to changes announced by the Department of Work & Pensions (DWP). The minister for disabled people, health and work, Sarah Newton, said of the changes: “We’ve listened to feedback from organisations and the public, and this common-sense change will ensure that the right protections are in place while minimising any unnecessary stress or bureaucracy.” While charities and campaigners welcomed the changes, concerns remain about wider flaws in PIP that have not been

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addressed. Parkinson’s UK said: “The assessment process is simply not fit for purpose and does not recognise the reality of living with long-term, progressive conditions.” To draw attention to the problem, the MS Society have launched PIP: A Step Too Far. This campaign challenges the reduction of the distance that someone needs to be able to walk to qualify for the higher level of support. The distance was 50m under disability living allowance (DLA), but has been reduced to 20m under PIP. As well as the financial impact, this has led to people losing eligibility for Motability cars and scooters. For more information on PIP, and other benefits that may be available to people with MS, see mstrust.org.uk/benefits.

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

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Your Views

Lots of you share your views on issues affecting people with MS in the letters and emails you send us, in 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 and twitter.com/mstrust or simply by giving us a call: 01462 476700

FES and foot drop Functional electrical stimulation (FES) is a treatment that applies small electrical charges to a muscle that has become paralysed or weakened due to damage in your brain or spinal cord. The electrical charge stimulates the muscle to make its usual movement. In MS it is mostly used as a treatment for foot drop. We asked you to share your experiences of FES. . .

Work and MS Back in April, Carla, who was diagnosed with MS in 2008, wrote a guest blog about her experience of managing work life and MS. “Working has always been very important to me. It’s more than just about the wages at the end of the month, or about the sweaty Summer commute. Working is another way for me to connect with others in a meaningful way.” When we shared the blog on Facebook, many of you responded with your own tips . . . “I was diagnosed in 2010, and have worked for myself since 2015. I am able to pace myself as a result, and my main client is understanding and appreciates the issues at play”

“I have the one with loads of wires. Not great in the summer or if you are in and out of the toilet every half an hour. . . but they do help!” “I have used one for four years. It really helps me to lift my foot. I can not walk safely when I am not using it”

“I work in an office and mornings are my best time. But by 1pm fatigue sets in” “I have reminders in my calendar and like to work in a certain way. Mornings I am at my best hence I start at 8 and also have my stretch times incorporated into my day. Helps that I have an understanding line manager”

Advice for the newly diagnosed During MS Awareness Week we asked people to #SpeakUp about MS and share advice for others coming to terms with an MS diagnosis. . . “Stick to reputable websites (e.g. MS Trust & MS Society). Others will send you info that may or may not be helpful i.e info on cures - there isn’t one. Don’t make any hasty life decisions. Lastly, there is always someone in the MS community that knows how you feel” “Regardless of pain and disability there are loads more good days than bad but you might have to search just a bit harder for the good”

“Don’t be scared to talk about it, and if you can, find a local support group. The power of talking to someone who also has MS is something I completely underestimated.” “Don’t give in, try to find different ways of doing things. Stay positive and keep smiling”

“I tried this, but was not for me, so I have a foot and leg brace now that does help my walking” “My mom used this and it really helped her. However she found she was allergic to to the sticky pads that hold the stimulant in place. Unfortunately can’t use it anymore as the reaction got bad” “My daughter tried one for foot drop but didn’t get on with it. Very expensive” “I love FES! I cannot walk without it. Sometimes uncomfortable but the benefits outweigh this”

Open Door August 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

Relapses and brain fog Many people with MS talk about ‘brain fog’ or ‘cog fog’ to describe the feeling that their thinking processes are not as organised or reliable as they used to be before they had MS. This study assessed memory and thinking (cognition) to see how it changed during and after a relapse. Authors Giedraitiene N, et al Title Cognition during and after multiple sclerosis relapse as assessed with the brief international cognitive assessment for multiple sclerosis Journal Sci Rep. 2018 May 25;8(1):8169 Read the summary tinyurl.com/y9pomsep

The study 60 people experiencing a relapse, 30 people with stable MS and 30 people who did not have MS took part in this study. Cognition was assessed using BICAMS, a set of tests which measure different aspects of thinking and memory and are quick and easy to complete. For people who were experiencing a relapse, the tests were given during the relapse, and then one and three months after the relapse. The group with stable MS and the group without MS were tested just once.

The results The scores for all three BICAMS tests were lower in people with MS, both relapsing and stable, than in those without MS. The score for the SDMT (Symbol Digit Modalities Test), which measures information processing speed, was worse in relapsing MS than in stable MS. Scores for BVMT (Brief Visuospatial Memory Test) and CVLT (California Verbal Learning Test) which assess visual and verbal memory were not significantly different for relapsing MS and stable MS. Within the relapsing group, scores

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for all three BICAMS tests improved one month after relapse. CVLT, which assesses verbal memory, improved further at three months after the relapse; the researchers suggest this could be due to a practice effect, in other words, the result of taking the test several times. Various factors affected the improvement of cognition after a relapse, with higher education and younger age being associated with higher SDMT scores. The researchers also found a greater improvement in visuospatial memory (BVMT) in men and greater improvements in verbal memory (CVLT) in women.

What does it mean? The main message from this might be to avoid making big decisions during a relapse! The study confirms that relapses can have an impact on cognition, with information processing speed being most affected. In everyday life, reduced information processing speed might be most noticeable as reduced concentration or finding it hard to stay focussed in a noisy or distracting environment. The good news is that processing speed improves quite quickly and is back to levels typical

for people with MS after just one month. Some neuropsychologists think that reduced information processing speed is the underlying reason Find out more about for all cognitive thinking problems and difficulties in MS. MS at The researchers mstrust.org.uk/cognition comment that cognition is not often monitored during clinic appointments and recommend that BICAMS would be a quick and effective way to do this, particularly for people having a relapse.

Cognitive problems at work Cognitive problems during a relapse may have an impact on work. Taking time off work may not be possible and some people with MS have no alternative but to continue to work during a relapse. If this is the case, it may help to let your manager or supervisor know that you are having a relapse. It may be possible to arrange for you to do some work from home, take some flexi-time or have longer or more flexible breaks during your working day depending on your needs.

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

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Intensive physiotherapy improves hand and arm use Constraint-induced movement therapy (CIMT) is a form of intensive physiotherapy originally developed to help people with one arm weaker following a stroke. In this small study, researchers tested this technique with people with MS and also looked for effects of the training on the brain. Authors Mark VW, et al. Title Phase II randomized controlled trial of constraint-induced movement therapy in multiple sclerosis. Part 1: effects on real-world function Journal Neurorehabil Neural Repair. 2018 Mar;32(3):223-232 Read the summary tinyurl.com/y8p3hrq9

The study 20 people with MS with significant weakness in one arm received either CIMT (see the panel for a description of the therapy) or a package of complementary and alternative therapies (CAM) which included aquatic therapy, massage, yoga and relaxation techniques. People in both groups received 3.5 hours of direct contact from a therapist each day for 10 consecutive weekdays. Eight people from each group completed their treatment and returned for followup assessment one year later. The researchers also used advanced MRI techniques to compare brain structures in the two groups before and after treatment.

The results The CIMT group showed more improvement in the everyday use of their weaker limb than the CAM group. The improvement was retained at the one year follow-up. Both groups showed improvements in the speed and dexterity of their weaker arm immediately after treatment courses. At the one year follow-up, speed and dexterity of the weaker arm had continued to improve in the CIMT group but was returning to pre-treatment levels in the CAM group.

MRI results suggested that in the CIMT group there were measurable changes in brain structures at the end of the ten days of treatment; this was not seen in the CAM group.

What does it mean? The small numbers in this study make it difficult to draw firm conclusions, but the results do suggest that CIMT leads to increased use of the weaker arm and that this improvement lasts for at least one year after treatment. The results also suggest that by continuing to make greater use of the weaker arm, those in the CIMT group saw continuing improvements in strength and dexterity. The MRI results suggest that CIMT produced changes in areas important for hand-eye coordination and for communication between different parts of the brain.

Find hand and arm exercises for people with MS at mstrust.org.uk/exercise

More about constraint-induced movement therapy Constraint-induced movement therapy (CIMT) is a physiotherapy technique, originally developed for people who had one-sided weakness following a stroke. It is based on the theory of ‘learned non-use’ – the idea that after a stroke or other condition which affects the use of one limb, people learn to not use that limb even though it has the potential to be used, relying instead on the stronger limb. The treatment involves intensive physiotherapy sessions, concentrating on exercises and setting small incremental steps to gradually improve the use of the weaker limb. Outside of the physiotherapy sessions, training is reinforced by restricting use of the stronger arm, typically with a padded mitt, for up to 90% of waking hours. CIMT works not only by undoing the process of learned non-use, but also by helping the brain to re-wire itself. Brain plasticity (also known as neuroplasticity) refers to the brain’s ability to change over time. Plasticity is important for regaining function after a relapse and maintaining function in the longer term. By carrying out repetitive exercises, the central nervous system is able to overcome small areas of nerve damage by rerouting messages via undamaged nerve cells. CIMT is recognised as an effective treatment for people who have had a stroke, but it makes heavy demands on limited physiotherapy resources. It may not be feasible for NHS services to deliver CIMT in the same way as described in this study, but it can be adapted so that it can be offered by community physiotherapists and neurorehabilitation teams.

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

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Should we be testing the benefits of exercise earlier in the course of MS? It is well-established that it is important to start taking a disease modifying drug early in the course of relapsing MS in order to gain the most benefits from fewer relapses and fewer new lesions, ultimately leading to less long term disability. Could the same principle be applied to exercise? Author Riemenschneider M, et al Title Is there an overlooked “window of opportunity” in MS exercise therapy? Perspectives for early MS rehabilitation Journal Mult Scler. 2018 Jun;24(7):886-894 Read the full study tinyurl.com/ybfznjsy

A group of Danish researchers has considered whether the benefits of early treatment, which are well-established for disease modifying drugs, could also be applied to exercise therapy. Exercise therapy, which covers a range of different approaches from endurance training to resistance training, has been extensively studied in MS and has been shown to have significant beneficial effects on a variety of symptoms such as

fatigue, walking, balance and depression. The researchers analysed studies of exercise therapy and found that none have looked at the effects of treatment any earlier than three years after diagnosis. Studies typically include people with an EDSS of at least 3, equivalent to mild to moderate disability in several functional systems. This means that the vast majority of studies have evaluated exercise therapy once someone’s MS is well established.

The researchers suggest that there may be an early “window of opportunity”, starting with the first episode of neurological symptoms and continuing into the first few years after diagnosis, where exercise therapy may have the potential to modify the course of MS. They point out that recent studies have shown that exercise therapy can have a direct effect on the brain, including improvements in brain volume and cognition. They propose that studies investigating exercise therapy as an additional treatment strategy in the early stages of MS are warranted.

Could people using FES to improve their walking also have improved bladder symptoms? There have been anecdotal reports of improved bladder symptoms from people using an FES (functional electrical stimulation) device to improve their walking. A team based in London has gathered data from people being fitted with a device to explore this further. Author Hare N, et al Title Improvement in overactive bladder symptoms in patients using functional electrical stimulation of the common peroneal nerve for walking Journal Clin Rehabil. 2018 Jun 1:269215518780974 Read the full study tinyurl.com/y8qfvbqu

An FES device applies small electrical charges to a muscle that has become paralysed or weakened, due to damage in your brain or spinal cord. The electrical charge stimulates the muscle to make its usual movement. In MS it is mostly used as a treatment for foot drop. People using an FES device have said that they also have improved bladder

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symptoms. To investigate this, 47 people attending a clinic to set up their FES device were asked to complete a questionnaire assessing bladder symptoms at the start and after three months of using the device. Of the group, 35 had MS and the remainder had other neurological conditions. Improvement in overactive bladder

symptoms was not significant for the group as a whole. But for people with MS, changes were significant, with particular improvements in urgency and incontinence. The biggest improvements in bladder symptoms were seen in those with slower initial walking speeds. The researchers conclude that FES use does improve overactive bladder symptoms in people with MS and that further research is warranted to discover whether this results from a direct effect on the bladder or indirectly through an improvement in mobility.

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

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L I F E W ITH MS

My MS diagnosis inspired me to write a book 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 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. Having hidden her MS for a number of years, Lisa Murray-Lang decided to put pen to paper and write a book about her life with the condition as a way of letting others know. This is Lisa’s inspiring story.

Diagnosis I was diagnosed with MS in 2007 after noticing weird tingling in my fingers. I went to the doctors about four times, and every time they’d say ‘Oh that’s strange’. Eventually I was sent for an MRI scan and they found scarring on my brain. I was told I had primary progressive MS. At the beginning, the only person I knew with MS was a friend of my mum’s, who was in a wheelchair, so all I kept thinking was ‘Is that going to happen to me?’ I was very much in denial at first and I just kept everything bottled up inside. I didn’t want to be defined by those two letters, so my way of coping with it was to take on as many challenges I could, with the attitude, ‘While I can, I will’. But as the disease progressed, I was finding my foot wasn’t picking up like it used to and I was falling over a lot, so the challenges had to change. But whenever it gets me down, I just remind myself that it could be much, much worse. I know I am one of the lucky ones. After all my health worries, I was dealt another blow when I was made redundant from my job as a designer at Cadbury’s after 13 years working there. But actually this turned out to be a blessing in disguise. It made me revaluate my life and do something that I really loved; so I set up my own dog walking and pet sitting business.

Animals have been my saving grace. They don’t look at you funny, or say ‘Why are you limping?’. They just accept everything.

Putting pen to paper Changing career was also the push I needed to open up about my condition – and I decided to do so in a book! How do you drop a bombshell like that in the middle of a conversation?! The book, which is called On a Whisker and a Prayer, is basically my memoir, touching on the ups and downs, laughter and tears of life with MS. I didn’t want it to be depressing or frightening – I wanted to keep it lighthearted, and I’ve included a Purple Ronniestyle comic strip as a way of explaining MS to my friends and colleagues.

it head-on. I hope the book inspires people. I want it to show that once you’re diagnosed, that’s not it, so don’t let people write you off.

Advice for others My advice for other people who have been diagnosed with MS is not to turn to Dr Google. Take it one day at a time, and remember that everybody is different: there is no text book case or set path to follow.

If you have an inspiring story you’d like to share, please email mystory@mstrust.org.uk

I wrote and designed the book, it’s 100% me and I found the whole process very therapeutic. I kept my MS bottled up for so long, so it was a relief to write everything down, get it out in the open and tackle

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

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“Jon’s support has been invaluable” Last summer, thanks to our incredible supporters, the first MS Trust-funded MS specialist nurses arrived at Leicester Hospitals. Since then, we’ve also helped to bring new nurses to Bradford and Lanarkshire, and soon Hull. Together, they’ve made a world of difference to thousands of people living with MS. We caught up with Leicester nurse Jon Maisey to find out about his first year in post, and Jenna Chudasama, to hear about the invaluable support he’s given her. An MS diagnosis can be a lot to get your head around. There’s the unpredictability to navigate, the invisible symptoms, the different treatment options, and the emotions that come with knowing you’re going to have to deal with the condition for the rest of your life. Having an MS specialist nurse by your side through the highs and lows of that journey is absolutely vital. They often work with people from the moment of diagnosis, throughout their lives with MS, providing expert information and support, and someone to turn to when you feel like you’re having to deal with MS alone. Jenna Chudasama, a 31-year-old teacher from Leicester, has been lucky enough to experience this invaluable support first hand. “When I met my

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MS nurse everything started to make sense,” Jenna remembers. “I could ask the questions I wanted to: What is MS? How is it going to affect me and my life? I left my first appointment thinking, ‘I can do this; yes I’ve got this condition, but I can deal with it’.” Jenna’s MS nurse is Jon Maisey, who was the first nurse the MS Trust helped recruit and fund as part of the charity’s pioneering Specialist Nurse Programme, which helps to bring MS specialist nurses to the areas across the UK that need them most. Jenna’s bond with Jon was ‘instant’, and has been unwavering in the 12 months since. “I’m a natural worrier and I need answers to my questions or they will just fester in my mind and that’s where Jon

“When I met my MS nurse everything started to make sense”

comes in. Whether it’s having issues with a DVLA application or concerns about my holiday, Jon is able to give me an answer instantly, and if not, he calls back when he does have the information.” In fact, it was Jon’s support that actually persuaded Jenna’s husband to run the London Marathon for the MS Trust back in April. “He attended the appointment with me and he could see I was able to get the answers I needed. Jon was of course funded by the MS Trust, as well as trained and supported by the charity, so he wanted to do his bit so other people have the same support that I have.” For Jon, his first year in post has been a “whirlwind”, but a very rewarding whirlwind, especially when he hears stories like Jenna’s. “It’s why I became a nurse,

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

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“Whenever we can make a difference, it feels amazing”

to help people, so when you hear that you are making a difference, it’s everything! All we want to do is to make life easier for people and that’s always what I aim for. Whether it’s through managing pain or helping someone with their mobility, whenever we can make a difference, it feels amazing.” To the MS Trust supporters who make our work with nurses possible, Jenna and Jon say “thank you”: “I am so grateful and I have always felt so blessed that I have a nurse who is constantly there to support me in every way. It’s worrying for me to know some areas don’t have that support. I can’t imagine not having Jon to contact, with anything really, so a huge thank you.”

The story so far It was back in 2016 when we first launched our campaign to fund new MS specialist nurses in the areas of greatest need. Since then, some amazing progress has been made as we work towards our goal of ensuring no one is left to manage MS alone. In February 2017, we announced we would be working with the MS team based at Leicester Hospitals, the first team to be involved in the Specialist Nurse Programme. We helped to recruit and fund two new MS nurses to support people living with MS in the area, and Jon Maisey and Joanne Pughe have now been in post for over a year. “The additional nurses have made a tremendous difference,” says Allison Smith, MS nurse in Leicester. “They’ve had a huge impact, both in terms of the number of people we are able to see and the quality of our service.” In April 2017, we marked MS Awareness Week by announcing Bradford as the second site to benefit from the programme and Sally Fox was recruited to the role in November last year. We’ve also been working with NHS Lanarkshire to improve access to MS nurses and ensure people with MS get the support

they need. A lack of MS nurses had been a long-standing problem in the area. When the experienced MS specialist nurse left to work elsewhere within the field of MS, the MS Trust worked with the Lanarkshire team to fill the vacancy, as well as funding an additional MS nurse through the Specialist Nurse Programme, and supporting the recruitment of a neurology specialist nurse, to provide care to both people with MS and Parkinson’s. Claire Millar, Claire Purdie and Julie Wilkie started in post in September 2017 and, nearly a year on, have been making great progress. “The MS Trust Specialist Nurse Programme has helped the Lanarkshire MS nurse service to develop and flourish, and most importantly reach people with MS in Lanarkshire to support them and their families to live well with MS,” said Karen Maclure, service manager. But this is just the start. We recently announced that we’ll be helping to fund a new MS nurse in Hull, and we’ll be updating you on further sites very soon. We know there is still a long way to go and many people across the country still have to manage their MS alone, but with your support, we’re determined to change that.

How you can help make a difference To enable us to continue to support and fund nurses, we need friends! Friends of the MS Trust are dedicated supporters who come together and help us reach more people in their local community. Could you organise a cake sale, coffee morning or a quiz in your local area? Or perhaps organise a collection in your local supermarket? For more information, please visit mstrust.org.uk/friends

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

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S TAY I N G AC TIV E

Miles for MS During the month of May, over 100 people walked, ran, swam, jogged, rowed, arm cycled, wheeled and more as part of Miles for MS, our brand new accessible distance challenge. We caught up with some of those who took part to find out why they wanted to get involved and how exercise has helped them live well with MS

“I find exercise a real positive in my life” Bron rowed the length of Lake Bala in Wales every day in May

the largest natural lake in Wales, which I remember visiting as a child. It turns out my Welsh ancestors originate from villages around Lake Bala and some of my distant relatives continue living in that area. I decided to virtually row the length of Lake Bala every day. I travelled 5.6km every day - primarily indoor rowing, but if there was no machine available, by walking. My husband and friends helped on days when I was unable to summon the energy, but I enjoyed the challenge of completing the daily distance. I actually felt like my strength increased, plus I got some long overdue cardio workouts. I find exercise a real positive in my life. When I am really struggling to do what I enjoy I can encounter feelings of sadness at the loss, but I am constantly looking for what I’m able to do rather that dwelling on what I can no longer do.

I was diagnosed with MS in 1996, in my mid-20s. I’ve had a whole range of symptoms over the years, but the ones I now live with on a daily basis are fatigue, left side weakness and both of my hands have numb fingertips. I have always been an intermittent exerciser. I began training with weights aged 13 and always tried to maintain this weight training. I’m convinced that these isolation weight-bearing exercises helped my recovery from my biggest relapses. Getting into running kept my legs moving; although at times I was so weak and unbalanced I couldn’t walk more than two steps, I’ve always been Thank you strong-willed and forced myself to just keep to everybody going. I then discovered Nordic walking Fee set herself who took part in Miles and found a great alternative to running, a series of which provided built-in ‘balance’ poles. I for MS and helped us raise walking also enjoy gym classes because the buzz over £43,000! Register your challenges I find to be positive and uplifting, and I interest for next year’s event I was diagnosed try to do pilates, which has really helped at with MS about with my core strength. I think this aspect of mstrust.org.uk/miles eight years ago after exercise is so important for my future disease feeling something management. Finally, I discovered enjoyment in wasn’t quite right for some time. My the challenge of indoor rowing. I love being able to main symptoms are fatigue, pain, anxiety, stiffness, pins and test myself, time myself and achieve more. needles and weakness, particularly in my legs. I signed up to Miles for MS because I use the MS Trust website I wanted to take part in the Miles for MS challenge because I as my go-to source of information for MS and I was seeking a think the MS Trust is amazing. When I was first diagnosed, the MS charity challenge that I would be capable of. When I saw that I could complete whatever distance I wanted, via whatever method I Trust was who I turned to, to gather all the information I could and I have turned to them on numerous occasions since. wanted, that really appealed. When I saw Miles for MS, I jumped at the chance to create my I decided to try rowing on an indoor rowing machine for my own challenge which would personally be very challenging but Miles for MS challenge. I looked around for a body of water that I hopefully achievable and raise money for the MS Trust. could use as my virtual rowing venue and I decided on Lake Bala,

“I walked more than I ever dreamed would be possible”

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About a year ago, I had a bad flare up and a severe relapse in relatively quick succession which made life difficult. When my symptoms worsened and I developed new symptoms, in my legs in particular, I didn’t think I would be able to do a lot of the things I used to. The stiffness and weakness made it very difficult to walk more than 20 metres unaided, I was veering off to the left and my balance was poor. I spoke to my MS specialist nurse who referred me to neuro-physio where I learned a variety of strength, balance and stretch exercises which I now do daily. The improvements to my ability to balance have been remarkable and my wellbeing is generally better. I still have significant problems walking far but the distance I am able to walk in one go has improved massively. I set myself a personal challenge of walking five miles in dedicated Miles for MS walks across the month of May. The reason I chose walking is because I used to really enjoy my walks. I have a beautiful baby boy and with this challenge I wanted to try and walk further independently so I can do more with him, especially now he’s becoming more active! The challenge went really well. I pushed myself a little too hard at the beginning so I had a few sleepless nights with the pain but after that I paced myself. By the end of May, I walked more than I ever dreamed would be possible and doubled my original goal. My advice to others diagnosed with MS is to remember that you’re not alone. You will have to make adjustments but try and stay positive because you can do this! MS may limit what you can do but it will not limit who you are.

“It feels good to achieve something - no matter how big or small” Hannah walked 100 miles for her Miles for MS challenge I was diagnosed with MS in March of this year after a year of experiencing all sorts of funny things, these things I now know to be called relapses. My symptoms vary, but the main ones are altered sensations from my waist down caused by inflammations on my spinal cord, plus the ‘lovely’ MS hug and fatigue. I wanted to take part in Miles for MS to raise awareness of MS (it is not something to be ashamed of), raise money for the MS Trust (who do so much in supporting people with MS) and to give myself a morale boost (to prove I can still achieve something and that life isn’t over!). My challenge was to walk 100 miles across the month and it went really well. On good days I racked up some extra miles so that on bad days I could rest. So many people offered to keep me company on my walks, so often I didn’t even notice I was doing it! I chose this challenge to try and take a positive approach to my diagnosis - I’m really fortunate to be in the position I am in and taking part in this challenge and achieving a goal has really

helped me realise this. When you have MS, keeping active can be a real morale boost and it feels good to be able to achieve something - no matter how big or small. My advice to somebody who’s just been diagnosed with MS is don’t be ashamed to feel sad or angry for a while. Then have a strong drink (!) and look at all the positives in your life.

“Exercise makes me feel good” Rowena cycled over 300 kilometres on her spinning bike during May When I saw this challenge I thought ‘Great! This is something I can now do to help raise money!” I was diagnosed with secondary progressive MS in June 2017, and before my diagnosis I did a number of runs for charity. But due to problems with my mobility I cannot walk far now, so I’m unable to take part in running challenges any more. Although I attend weekly yoga and pilates classes, the only cardio-vascular exercise I can do comfortably is on my spinning bike, so I thought I’d put this to good use and raise money for the MS Trust as part of Miles for MS. I have cycled 356 kilometres in total and really enjoyed the challenge and raising money to support people with MS. Exercise on my bike keeps me fit, tones my muscles, helps me to maintain a healthy weight, helps me cope with the challenges of MS, and makes me feel good. My advice to somebody who’s just been diagnosed with MS is to be positive and make your life easier by accepting the aids and help out there. The hardest thing for me was to accept help; like having a blue badge, walking with a walking stick, and using a motor mobility scooter. But I now have all of these and it makes my life so much easier.

Practical tips :: Heat sensitivity is a common MS symptom. If you find that you get hot and uncomfortable when you exercise, try to cool the environment you are in. :: If fatigue is a problem for you, you may want to focus on exercise to strengthen your muscles, or resistance exercise. It is important to acknowledge, both when exercising and in daily life, that it is not a good idea to ‘work through’ fatigue you may end up feeling worse, often for days afterwards. :: If you have MS, it might take you longer to recover from exercise than someone without MS. You have to learn to listen to your own body and be honest with what it is telling you. :: Check with your doctor, MS Team or physiotherapist before embarking on a new exercise programme, to be sure it is appropriate for you. You can find more information on staying active with MS at mstrust.org.uk/exercise

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

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FO CU S O N

Holidays and MS It’s that time of year when everyone is jetting off on holiday, but when you have MS there’s often a bit more planning involved before you can pack up your suitcase and head to the beach. Where can you find accessible accommodation and attractions? How do you organise travel insurance? What are the rules around travelling with medication? These are just some of the many questions you may face. So whether you’re planning a holiday overseas or a last minute trip somewhere in the UK, this article goes through a few key things to think about in advance. Finding the right holiday for you

so you can have a seamless, fun-filled break. If you want a more comprehensive guide, the Rough Guide to Accessible Britain lists a wealth of accessible attractions all over Britain along with insightful reviews from those who have visited them.

Having MS doesn’t mean that you have to compromise when it comes to holidays – they can be just as fun, relaxing, varied and adventurous. Whether you fancy a relaxing beach holiday, a European city break or a holiday in the UK, there is an Arranging air travel assistance increasing number of travel organisations who can If your chosen destination means travelling via plane help you search for accessible accommodation make sure you let the airline know what assistance and things to do so you can find your perfect you’ll need when you book the holiday. It’s useful to “For me, the worst thing break. get written confirmation of the assistance that’s about flying is getting on and The best thing you can do is plan ahead been agreed and confirm this when you check in. off the plane. I have to be carried and make sure you do plenty of research in Airports must provide free assistance to help you and always feel deeply humiliated as advance. Organisations like the Disability check in, move through the airport, board the I am tipped backwards and carried Holidays Guide (disabilityholidaysguide.com) plane, find an appropriate seat, use the toilet and past staring passengers (and and Disabled Holidays (disabledholidays. leave the plane. stare they do)” – Elaine com) have information on accessible Sunflower accommodation in the UK and abroad, specialist Lanyards, like tour operators, flight assistance, taxi transfers and the one pictured mobility equipment hire. Once you’ve found a place on the right, are being you like, it’s best to contact the hotel, villa or apartment directly rolled out in airports across to double check that they’re able to meet your accessibility needs the UK to discreetly alert staff before you go ahead and book. Don’t forget to research the area of passengers with hidden around where you’re staying too. Are there accessible restaurants disabilities who may need extra support. Get in touch with your and other leisure activities nearby? What’s the terrain like in the local airport to request one. area you’re staying? Unfortunately not all people with disabilities who travel by plane If you’re holidaying in the UK and are in need of inspiration for have a positive experience. There are many stories of wheelchairs some exciting days out, Disabled Go (disabledgo.com) and Open getting lost or damaged, and the assistance provided not meeting Britain (openbritain.net) have detailed accessibility information on people’s expectations. If your journey does not run smoothly, you places to visit, like museums, theatres, shops, restaurants and pubs, can complain to your airline and the Civil Aviation Authority. The

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Equality and Human Rights Commission has more information on the rights of disabled air passengers (equalityhumanrights.com).

insurance sorted as soon as possible. It not only covers you for unpredictable events whilst you’re on holiday, it also covers you if anything goes wrong before the trip. Most mainstream insurance Staying cool in warm weather (or vice versa!) providers will cover people with MS, although it may be more Many people with MS find that heat can make their symptoms expensive. Make sure you shop around to find the best price, let worse, so if you’re jetting off to a warm country (or if there them know that you have MS and always check through the policy happens to be a heatwave in the UK!) it’s worth documents to ensure it covers everything you need. For thinking about what you can do to prepare for instance, does it cover any mobility aids you’re taking? hot weather in advance. Sensitivity to heat “Don’t dismiss the Will it cover costs for any medical treatment you need can be managed in a number of ways, unexpected – after years because of your MS whilst on holiday? Comparison including: of self-catering in small coastal websites, like Compare the Market and Travel • Drinking cold drinks regularly villages, I never thought I’d love Supermarket, are a good place to start looking throughout the day a large hotel at a big holiday park. for insurance. There are also some insurance • Using a small mist spray bottle to spray But entertainment on tap delights companies that cater specifically for people with your face with cold water our daughter and the treat of pre-existing health conditions which can be found • Running your wrists under cold water someone else cooking saves by searching online. • Using a handheld fan when out and about my energy” - Caroline If you’re really struggling to find travel insurance at a • Eating light meals, such as a salad reasonable price, an insurance broker will be able to carry • Taking a cool bath or shower out a search for you. The British Insurance Brokers’ Association • Investing in cooling garments, such as cooling has a database of brokers which you can search by medical hats, scarves, ties and wristbands, which can be worn condition (biba.org.uk/find-insurance). throughout the day. If you’re travelling somewhere in the EU, don’t forget to take Cold sensitivity can also cause MS symptoms to flare up, so if your European Health Insurance Card with you. This card entitles you’re going away somewhere where the weather may be cooler you to treatment in state-run hospitals in EU countries at the than you’re used to, make sure you take enough clothing with you same cost as local residents. This means treatment will often so you can layer up. be free or at a reduced cost. As well as covering unpredictable Travelling with your medication illnesses and accidents that may happen on holiday, it also covers Different countries have different rules and regulations when it treatment for pre-existing medical conditions so if your MS comes to medicines. If you’re travelling abroad you’ll need symptoms flare up while you’re away and you need treatment, to make sure that the country you’re travelling to you’ll be covered. European Health Insurance Cards are will allow you to take your medication into that free and can be ordered online (ehic.org.uk). “I’ve always loved to country. To check this, you should contact Enjoying your holiday! travel. A couple of years the embassy for the country you’re visiting – ago I took six months off work Once all the hours of planning and researching you can find a full list of foreign embassies to go travelling, and it is one of the are done and you’ve finally made it to your in the UK on the gov.uk website. best things I have ever done. I am chosen destination – whether that’s a sandy If you’re travelling by plane, keep your disabled but I was still able to go beach, a cosy log cabin or a swish hotel – be sure MS medication with you in your hand scuba diving, wheelchair trekking, to relax, put your feet up and make the most of luggage (unless your airline tells you and even learned how to fly a this much-needed time for you. otherwise) and make sure it’s kept in its plane!” – Srin original packaging. As a general rule, when travelling abroad it’s best to take a copy of your prescription with you and a letter from your GP, with details about your medication and your health condition, to avoid any problems at customs. If you’re travelling somewhere warm and your medication needs to be kept below a certain temperature, speak to the For more on holidays visit manufacturer of the drug as they may be able to provide a travel our website at pack to keep the medication cool during your journey. mstrust.org.uk/holidays Finally, wherever you’re travelling to, make sure you take enough medication with you to last the duration of your holiday, plus a little extra in case of any travel delays.

Organising travel insurance Once you’ve booked a holiday it’s important to get your travel

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

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AS K T H E EXP ERT

MS fatigue If you have MS, it’s likely you’ve experienced that overwhelming feeling of tiredness or sudden lack of energy that defines MS fatigue. It’s one of the most common symptoms of MS and many people find that the heat can make it worse. So with temperatures rising and the 2018 summer scorcher in full swing, we put your questions on fatigue to occupational therapist, Kate Hayward

Q

How can I manage fatigue better at work?

Kate says: Taking regular rest breaks, making sure you have your lunch and eating and drinking regularly can help you to manage your fatigue at work. Early disclosure of your MS in the workplace has been shown to be beneficial in research studies. If you’ve told your employer about your condition, you can work with them to agree how you’re going to manage fatigue at work. Taking additional rest breaks can be agreed as a reasonable adjustment. Another thing you could perhaps think about is the commute to work. Are you finding that really fatiguing? Are you getting to work and you’re already exhausted? Perhaps you can agree with your employer that you can work a couple of days from home to reduce the impact that the commute might be having on you. You could also consider contacting the government’s Access to Work service for an assessment. 18

Q

Heat seems to make my fatigue worse. Why is this?

They might be able to look at Kate says: Lots of people whether your work station is set up with MS can experience appropriately so that it’s as efficient heat sensitivity fatigue. as possible. This might involve This is because the myelin exploring things like sheath around the nerve voice activated acts an insulator and “Try and get a software which to work efficiently, consistency in the might help sending activities you’re doing you to save messages from so you can maintain your some energy the brain to energy as best you can from typing, the body, the through the day and or perhaps nerve needs week” looking at the to maintain chair you’re sitting a constant in and whether that’s temperature. It only as supportive as it can be so that needs to increase in you’re not wasting any energy there. temperature by about half Access to Work also has a taxi to a degree to not work as work service which you might be efficiently so it can take able to use if the commute is really longer for the messages fatiguing. to get through. This tends to quickly reverse when you cool down. It can be useful to think about how you might try and keep cool so perhaps having a

cool bath or shower rather than a hot one, having a window open when you’re cooking and sometimes even avoiding large spicy meals, which can increase your body temperature, can be helpful.

Kate Hayward is an occupational therapist at the National Hospital for Neurology and Neurosurgery, London

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

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Q

How is fatigue most successfully managed?

Kate says: Fatigue management requires a coordinated approach. There are several evidence based strategies for managing fatigue. These can include a combination of exercise, psychological therapies and energy conservation techniques. One of the main things you can do is think about how you can plan and prioritise where you want to spend your energy. People with MS fatigue often fall into a ‘boom and bust’ pattern of activity where they’ll try and do lots of things when they have some energy but that then tends to lead to a crash in energy levels later. What you want to try and do is get a consistency in the activities you’re

Q

doing so you can maintain your energy as best you can through the day and week. That involves resting regularly throughout the day to keep topping up your energy levels. It can be helpful to speak to someone about how you manage your fatigue. You can ask to be referred to an occupational therapist, maybe to physiotherapy or to “Planning and psychology as well, so prioritising what that you can get some you’re doing, when you advice on how to can save energy and when manage fatigue and you can do different then start to test out activities can be really the strategies which helpful” might work best for you.

Do you have any tips for managing fatigue when you have a young family?

Kate says: Managing fatigue with a young family can be really difficult, especially when your sleep is disturbed. Planning and prioritising what you’re doing, when you can save energy and when you can do different activities can be really helpful. It’s good to try and have a coordinated approach with your partner or with other family members. Try to agree with them who’s going to do what childcare duties on which days and plan around the times when you might have more energy so that you’re not asking them to do things when you’re at the point of exhaustion. You might also want to think about getting some outside help, so perhaps getting a cleaner, especially for the heavier household chores. Maybe there’s things that you’re doing each week that you perhaps don’t have to do at all. It can be good to think about areas

where you might be able to save energy. Could you perhaps do online shopping instead of going to the supermarket? Could you buy pre-chopped or frozen vegetables? Sometimes doing batch cooking, where you cook all the meals for the week at the weekend when you have more time, can be more useful than cooking from scratch when you come home from a busy day at work. If you have older children, you could think about different activities that they might be able to help you with. You could also consider talking to your children about how fatigue might be impacting on you so that they can understand why you’re perhaps not able to play with them or help them at a specific point during the day, but that you’ll be able to help them later.

Q

Are there any drugs that can help with fatigue?

Kate says: There are no drugs that are licensed in the UK that are specifically for MS fatigue. There are some medications that are used for other conditions that may be prescribed to help with MS fatigue but the evidence behind them is actually quite small at the minute and there’s no real clarity as to how helpful they can be. One of the medications that is available is called amantadine, but it’s only effective for quite a small group of people with MS fatigue, so not everybody. Another medication that some people might be prescribed is called modafinil but this isn’t actually recommended at the moment for MS fatigue. It’s only licensed for people with narcolepsy so it’s being prescribed less often but some people with MS might still be on it. Medications are not the first line treatment for MS fatigue at the moment because the evidence base is small. Self management strategies are still the first way to go. However if you’ve tried these and fatigue is still impacting you, you can speak to your neurologist about perhaps trying some medications to see if they do have an effect for you.

For more on fatigue, visit our website at mstrust.org.uk/fatigue

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G E T IN VOLV ED

Achieving a lifelong ambition Anne and Jim Thompson have organised many fundraising events and challenges over the years, from Easter egg tombolas to open water swimming. Anne tells us why they support the MS Trust and about her husband Jim’s latest challenge to trek the length of the UK.

Jim and I have supported the MS Trust for over 20 years. My son was diagnosed as a 21-year-old young man with relapsing remitting MS, which very quickly progressed to secondary progressive MS, but he had in fact had undiagnosed symptoms since he was 12 years old. We support the MS Trust because they have always supported us, as a family, giving us information whenever we have been unsure of anything MS related. We have turned to them for the facts around lots of misleading press and TV reports about so-called ‘cures’. Jim’s most recent challenge is his most adventurous, walking over 1,300 miles from the most southerly point in Great Britain to the most northerly point, via the west coastal paths. It’s his lifelong ambition to complete this walk and it coincides with his 60th birthday year. At the time of writing, he is on day 30 of 105 and has already completed over 400 miles, walking through and photographing the beautiful Devon and Cornwall coastline. He’s been sending back stunning pictures on his Facebook updates, much to the delight of his many followers. To date he has over £4,000 on his Virgin Money Giving page, and has been encouraged by the generosity of strangers along his route who have stopped him and donated. He has met many people whose lives are affected by MS who have shared their stories with him. As we have been fundraising for many years we have done most of the usual things to raise money. Mine have mainly involved selling my home-made crafts and cakes at coffee mornings, whilst Jim has done most of his fundraising activities outdoors, including taking part in the Great North Run, and wild swimming and walking the islands of the Inner Hebrides. Stephen, my son has also done skydives and a zip wire from the Tyne Bridge, so it really

is a family effort which has raised over £27,000 for the MS Trust so far. We hope the money raised will go to help everyone affected by MS because information, especially at the point of diagnosis, is probably just as important to people with MS as their MS specialist nurse and research into this terrible disease. More and more specialist nurses are needed. They can be a vital point of contact when new symptoms appear as they are the ones most knowledgeable in the ways to help. I have found ours, Barbara Wingrove at Sunderland Royal Hospital, a constant source of information and reassurance when flare-ups occur. Barbara is retiring this year and will be greatly missed, I’d like to thank her for everything she has done for people with MS and their families. For anyone thinking of becoming involved in fundraising for the MS Trust, I can honestly say it is one of the most rewarding things I have ever done. Apart from the obvious benefits to people with MS, I have met and had my life enriched in many ways and by many lovely people along the way. I hope with all our help this disease will one day be conquered. As Open Door goes to print, Jim will be passing through the Glasgow area, on track to finish his epic journey in Dunnet Head on 30 August. If you would like to find out more or sponsor him you can visit uk.virginmoneygiving.com/JamesThompson59

Fancy taking on your own challenge? If you’d like to support the MS Trust by taking on a sponsored challenge, big or small, we would love to hear from you. Contact our community fundraising team who can advise you and provide fundraising materials. You could enjoy a new experience or reach a new goal, whilst raising money that will make a real difference for people with MS. Call 01462 476707 or email fundraising@mstrust.org.uk to find out how we can support you.

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Want to make a difference by volunteering?

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 My Garden Party It’s not too late to hold a garden party, we could have plenty of good weather still to come! Order a My Garden Party pack which includes a fundraising guide, poster, invitations and more. mstrust.org.uk/mygarden

Santa Run, London Join us for a festive family day out in Victoria Park on Sunday 2 December. You can run, jog, walk or wheel the 5K or 10K route and you can even bring the dog. mstrust.org.uk/santarun The MS Trust only has a small team of staff, based in Letchworth in Hertfordshire, so we rely on our volunteers to act as our representatives around the UK. Our volunteers act as the face and voice of the MS Trust in their local area, raising funds and awareness of MS and our services. Volunteering not only helps the MS Trust continue to support people with or affected by MS, it can also be a lot of fun too. It’s a great way to meet people in your local area along with building up valuable work experience which can be added to you CV. There are many ways in which you can help, giving as little or as much time as you can fit in. The roles include: • helping in a local Christmas card shop • raising awareness by displaying our posters • placing collection tins in your local cafés/shops • organising a collection in your local area • joining a cheering squad at one of our events • speaking about MS and the MS Trust for local groups and events • attending cheque presentations • organising fundraising events • becoming a Friend of the MS Trust and setting up a fundraising group There are over 100,000 people with MS in UK who could benefit from accessing our services, and we want to reach out to all of them. By volunteering, you can help us do this. To register your interest please visit mstrust.org.uk/volunteer.

The Big Half, London Join us at this exciting half marathon on 10 March 2019 and run part of the iconic London Marathon course. Celebrate at the finish with The Big Festival in Greenwich Park. mstrust.org.uk/bighalf

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

Freedom Trail Trek, France and Spain Trek the Pyrenees from France to Spain along a WWII escape route from 4-9 July 2019. This 4-day mountain trek will be a tough but rewarding challenge, along a path with real historical significance. mstrust.org.uk/freedom

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

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1 5 M I N U T ES WITH The Dis abled Chef

James Coke “I want to encourage people who are not confident in the kitchen to stick on that apron and get cooking” James Coke, diagnosed with MS over 20 years ago, tells us about the inspiration behind his blog The Disabled Chef and shares some top tips for cooking with a chronic condition. James with his wife and son When were you diagnosed with MS and how have you dealt with your diagnosis? I was diagnosed in 1997 at the age of 32, but remember my symptoms started back in my early 20’s, with problems with my left leg. When the neurologist finally broke the news it was a major hammer blow. Deep down I knew it was coming, but I was still angry and fearful of the future. Once the dust had settled, I immersed myself in my enemy (MS), found some inner-strength and vowed to ‘Hold the line’. Since then I’ve climbed some big mountains metaphorically speaking, and helped a lot of people, which I am really proud of. I still look in that mirror every night though, reminding myself 21 years later, that there are still many peaks to climb and that whatever the odds – you never give in!

at home. Each recipe is costed to the gram, so you can get a definitive shopping list with absolutely no wastage. By using the site, it will save you money on your groceries and provide a balanced and healthy food plan. All the recipes are easy to follow so hopefully the site will encourage more people to get cooking. The inspiration for the idea came from some research I read, highlighting that on average each of us can only cook six meals from scratch, which shocked me. With record levels of obesity and people clearly missing out, on an abundance of tastes and flavours, I thought I’d better do my bit and try and redress the balance. The name is a play on words if you like as it is encouraging anyone who is not confident in the kitchen to stick on that apron and get cooking.

When did you first discover a love for cooking? My mum was a great cook and food was a big part of my life. I was the youngest of a big family and dinner was a magical time. It brought us all together, especially if older siblings were staying. That and Fawlty Towers inspired me to do home economics at school and then a catering course at college, which I later dropped out of. However, my interest in cooking didn’t stop. Wherever I have lived or travelled, I’d check out food and flavours and take those with me on my cooking journey.

What is your top tip for cooking with a chronic condition? Try and conserve your energy. I’m stronger in the morning when my dexterity is at a peak, I therefore try and do most of my cooking or preparation in that period. I can then just heat up the food later which frees me up for other chores and takes away any stress if I feel fatigued. The other top tip is use a food processor for chopping vegetables like onions, as it just speeds things up and can save a lot of hassle.

How has it helped with your MS? Well I can’t say cooking has cured me, but a balanced home cooked meal plan, has definitely helped. I love to experiment with herbs and spices, not just for their flavour but healing qualities too. I take pride in my prep work, which is often difficult because of my dexterity, but the end results are worth it when the aromas and food start to marry- it’s a type of therapy if you like. The eating of your work is then the icing on the cake, which can only be good for the body and soul, whether you are sharing it or not.

What advice would you give someone who’s just been diagnosed with MS? Ok it’s a scary time. It’s life changing and it’s impossible not to feel bleak about the future, but it’s certainly not the end of the world. Everyone ends up having a monkey on their back at some stage in their lives and MS is a big one, but you can carry it. Always try to be positive and find value with your achievements. However small they are, each one is a stepping Find James’ blog at stone leading to something better and you’ve got thedisabledchef.com to keep on that path. Finally, don’t ever surrender. I’ve learnt many things since diagnosis but mainly that and it is something I’ll take to the grave with me.

Tell us about your blog, The Disabled Chef The Disabled Chef is a website that brings you 100’s of recipes from around the world that I’ve cooked 22

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

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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 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 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. Remembering the MS Trust in your will is truly one of the most thoughtful and generous ways of giving. It is a simple way to make a real difference for people living with MS.

Remem a Chari ber ty Wee k 10-16 Septem ber Find ou t more at mstrus t.org.u k/ rac-we ek

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

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Look out for our updated website coming soon!

The MS Trust website is the go-to place for trusted information about MS. We cover a range of topics from MS symptoms and treatments to ways to live with MS day to day. Over 40,000 people visit the site each week to access reliable and free MS information. For MS information you know you can trust, visit: www.mstrust.org.uk Order MS Trust publications

– includes information sheets: e MS Trust go-to place for trusted Making sense ofwebsite MS Littleis Blue the Book Core pack • About MS • What happens after diagnosis? (introduction to MS) • Making the most of appointments • Living well with MS information about MS. • Resources brochure MS-444

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

We cover detailed topics, from symptoms andPrimary treatments to Disease modifying Sex & MS: men Are you sitting comfortably? progressive MS (posture) ways drugs to live with MS day to day. Managing your bladder Sex & MS: women MS and me: a selfSecondary progressive MS

MS-356

MS-352

MS-90

MS-290

MS-429

MS-213

management guide MS-318

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 OD August 18 working file.indd 24

17/07/2018 14:07:41

Open Door August 2018  

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

Open Door August 2018  

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

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