Quarterly newsletter of the MS Trust
Open Door May 2014
Rehab in MS Working together for practical solutions to everyday problems
Also in this issue Alternative medicine: what are the risks?
MS and pregnancy: what you should know
Practical tips for managing MS bladder problems
The secret art of MS
Welcome to the May issue of Open Door In this issue we have a special focus on how rehab services might help you find practical solutions to some of the everyday problems MS can cause. We talk to some of the pioneers of MS rehab, people living with MS and the health professionals who’ve worked with them to work out new ways of achieving their goals. Paula’s story on page 15, of how a physiotherapist has helped her deal with her mobility problems, and how she now hopes to be able to stand at her son’s wedding, is a particularly inspiring example of the difference good MS rehab can make. Also in this issue we look at what you might need to think about if you have MS and you’re planning on having a baby and how you can manage some common MS bladder problems. And we have our usual round up of the latest MS news and research. As I write, the MS Trust team is busy preparing for this year’s MS Awareness Week. By the time this issue reaches you the week will be over and we will be busy taking stock of what all of us, our friends and supporters, have achieved to make a difference for everyone affected by MS. One of our big goals this year was to encourage even more people to sign up for Open Door. So if you are one of our new readers and this is your first issue, welcome! We hope you’ll find lots of useful, interesting information that might make a practical difference for you. We’d love to hear what you think: you can send an email to opendoor@mstrust.org.uk or give us a call on 0800 032 3839. Finally I’d like to thank all of you who gave so generously to our February appeal in support of the MS Trust information service. It’s only thanks to the support of people like you that we can continue to answer questions on the phone, produce and update publications and create new web resources. Your support means that everyone affected by MS can continue to receive positive, practical, trustworthy information, and that no one has to deal with MS alone. Thank you very much.
Contents 4
News on drug appraisals and new MS clinical guidelines, plus a look back at the achievements of the MS Risk-sharing Scheme and a look ahead to some exciting new projects from the MS Trust
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Research update New research on simvastatin, complementary and alternative medicines and sexual dysfunction
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Rehab and MS In a special feature we look at what MS rehab is, how it might help you and what the MS Trust is doing to help everyone get the benefit 12 Professor Alan Thompson, Dr Diane Playford and Jenny Thain explain how MS rehab has changed and what’s available today 14 Wendy Hendrie explains how MS physiotherapy might help you 15 Paula and Peter share how physiotherapy has helped them achieve their goals
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MS and pregnancy Janice from the MS Trust info team explains what you might need to consider if you’re thinking of having a baby
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Tips for managing MS bladder problems Bladder problems are some of the most common symptoms of MS but they are often treatable. In an extract from our new book we share some practical tips
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Best wishes
News
A magical experience How a chance meeting on a course for people newly diagnosed with MS led Karen Walker and friends to a magical fundraising experience at 13,000 feet
Pam Macfarlane Chief Executive, MS Trust
21 The latest opportunities to get involved and make a difference for everyone affected by MS
PS: Did you know that you can now read Open Door online, on your tablet, by email or in large print? To find out more visit mstrust.org.uk/opendoor Have you moved recently? Please let us know so we can make sure Open Door is delivered to the correct address!
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Magnetic imagery Rod McLaren looks at how artists and scientists have represented MS and how you could snap up a bargain in the Secret Art Show
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 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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News
Affected by any of these news stories? Call our info team: 0800 032 3839 or 01462 476700 from a mobile Keep up to date with the latest MS news by signing up for our weekly email round-up mstrust.org.uk/newsalerts
For full references see mstrust.org.uk/information/news
New drugs for relapsing remitting MS > New decisions published, previous decisions reversed
Teriflunomide (Aubagio) – now approved for NHS in England, Scotland, Wales and Northern Ireland All four nations have now approved teriflunomide for adults with active relapsing remitting MS (normally defined as two clinically significant relapses in the previous two years), providing they do not have highly active or rapidly evolving severe relapsing remitting multiple sclerosis.
Alemtuzumab (Lemtrada) – NICE says yes in final draft guidance In April NICE announced that it intends to recommend alemtuzumab for adults with active relapsing remitting multiple sclerosis. NICE will issue the final guidance in June. NICE recommendations are normally enforceable three months from the date of publication, so neurologists should be able to prescribe alemtuzumab from October. This final draft guidance reverses the decision to not recommend alemtuzumab made in the previous draft consultation document issued in December. We’ve been actively involved in the appraisal process.
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SMC (Scottish Medicines Consortium) has met to consider use by the NHS in Scotland, with a decision expected on 12 May. Alemtuzumab treatment consists of an intravenous infusion on 5 consecutive days, followed by intravenous infusions on 3 consecutive days, 12 months later. In clinical trials, people taking alemtuzumab had about half as many relapses as people taking beta interferon 1a (Rebif). Two serious side effects have occurred: • overactive or underactive thyroid gland leading to thyroid disorders, affecting approximately 1 in 5 people • idiopathic thrombocytopenic purpura (ITP), a disorder that prevents blood from clotting, affecting 1 in 100 people Monthly blood and urine tests are needed to monitor for these side effects.
In February, NICE provisionally announced that it does not intend to recommend dimethyl fumarate. The committee asked for further detailed evidence of its cost effectiveness compared with other disease modifying drugs. The MS Trust has responded to the consultation process. Dimethyl fumarate is taken orally, as a tablet, twice a day. In clinical trials it reduced the number of relapses by about one half compared to placebo. This compares with beta interferons and glatiramer acetate which reduce the number of relapses by about one third compared to placebo. In one study the progression of disability was reduced for people taking dimethyl fumarate, however this effect was not seen in a second study.
Disease modifying drug therapy
The most common side effects have been: • flushing and feeling hot what you need to know • gastrointestinal upset – diarrhoea, nausea, Read abdominal pain factsheets on all these drugs and • headache Karen Alldus
Dimethyl fumarate (BG12, Tecfidera) – SMC says yes, but NICE have given an initial no In April, SMC announced that dimethyl fumarate is approved for use by the NHS in Scotland for treating relapsing remitting MS.
Open Door May 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
see the newly revised edition of our book, Disease Modifying Drug Therapy. Visit mstrust.org.uk/ factsheets and mstrust.org.uk/dmts or order on p23.
For more on all symptoms, drugs and treatments see our A-Z of MS: mstrust.org.uk/atoz
News
NICE publishes draft of revised MS Clinical Guideline NICE has published a draft of the revised clinical guideline Management of multiple sclerosis in primary and secondary care and has invited comments from registered stakeholders. The draft guideline gives provisional recommendations covering diagnosis, information and support, treatment of relapses, management of MS related symptoms and provision of services for the NHS in England, Wales and Northern Ireland. This draft guidance has been much anticipated by people with MS and MS health professionals; it is more than 10 years since the last guideline was published and services, treatments and therapies have moved on considerably since then. We’re pleased to see two key priorities highlighted • an MS team approach with MS nurses playing a central role to ensure that people receive high quality, coordinated care • the critical need to provide information and support to people, particularly at diagnosis However, we are very disappointed that two symptomatic treatments, Fampyra and Sativex (for walking problems and spasticity), have not been recommended. These two drugs can make real improvements to the quality of life of people with MS. We know that only a very small number of those who
could benefit have been able to access these drugs. We’ll be calling for a more transparent and accountable analysis of the evidence that has generated these recommendations. Consultation on draft guideline The recommendations made in the draft guideline are provisional and may change after consultation. The consultation period is open until 10 June. The MS Trust will be reviewing the provisional recommendations in detail and responding to the consultation. If you wish to comment on the guideline, contact the MS Trust by email info@mstrust. org.uk. For more NICE intends information to publish the about the NICE MS final guideline guideline see in October tinyurl.com/NICE 2014.
MSdraft
Delays to PIPs “unacceptable” Delays of more than six months for decisions on eligibility for Personal Independence Payments (PIPs) have been described as “unacceptable” and “dire” by the House of Commons Work and Pensions Committee. A report by the National Audit Office on the early progress of PIP was also critical of delays. It found that in some cases, people with a disability who were being moved from Disability Living Allowance (DLA) were found to be waiting up to six months to hear if they qualified for the new benefit. Part of the blame for the backlog was placed on Atos and Capita, the private contractors carrying out the face to face appraisal of claimants.
Tysabri explored for progressive MS A small Danish proof of concept study has suggested that natalizumab (Tysabri) may have a role in treating people with progressive MS. 24 people with primary progressive MS were treated with Tysabri for 60 weeks and markers in their cerebrospinal fluid monitored with lumbar punctures. The trial showed decreases in markers of inflammation and of damage to nerves and myelin. The researchers are part of the larger ASCEND study that has been studying Tysabri as a treatment in more than 850 people with secondary progressive MS. Results from ASCEND are expected next year.
Open Door May 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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News from the MS Trust IM P R O V I N G A C C ESS TO MS TREATMEN TS
Results from the Department of Health Risk-sharing Scheme As this edition of Open Door hits your doormat the preliminary results of the Department of Health (DH) Risk-sharing Scheme (RSS) will have been presented at the Association of British Neurologists meeting, and by the next edition we hope the full results will have been published in the Lancet or BMJ. Why was the scheme set up? It was set up in 2002 following an assessment by the National Institute for Health and Care Excellence (NICE) of four disease modifying therapies (DMTs) Avonex, Copaxone, Betaferon and Rebif, which concluded that, while clinically effective, the DMTs could not be shown to be cost effective at their then NHS prices. The RSS was the one of the first patient access programmes that are now a feature of the NHS and its results are therefore of interest to many people. It allowed people across the UK, who met the criteria for treatment, to be prescribed MS drugs on the NHS. A percentage of the people were included in a longterm monitoring study to evaluate the cost effectiveness of the drugs. The RSS is led by the Department of Health and operates under the oversight of a Steering Group representing the four UK health departments, the four companies whose products are made available through the scheme, the Association of British Neurologists, the UK MS Specialist Nurses Association, the Royal College of Nursing, the MS Society and the MS Trust. The Steering Group is advised by a Scientific Advisory Group.
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Why did the MS Trust get involved? The MS Trust got involved with the RSS because we believed that people with MS deserved access to treatment and to better services. Looking back it is now clear that the RSS ended the postcode lottery for these DMTs across the UK, and has been the catalyst for significant improvements in MS services, thus bringing tangible benefits to everyone affected by MS. Over 5,000 people with MS have been regularly monitored for ten years – a significant commitment. Neurologists, MS nurses and administrative teams at 72 sites around the country, under the guidance of two clinical leads, have worked hard to provide the necessary data
Achievements of the Risksharing Scheme Today, approximately 18 per cent of people with MS receive a DMT – a far cry from the 1 per cent in 1999, although still low in comparison with Europe (30–35 per cent) and the USA (50+ per cent). While we cannot underestimate the impact this has had for the 18,000 now receiving treatment, from the MS Trust’s perspective the most significant benefit has been the unprecedented growth in MS services precipitated by the scheme, such as:
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• I n 1993 there were 3 MS nurses; by 2001 this had increased to 80, but it was the RSS which was the catalyst for an increase to over 230 MS nurses in the UK today. • At the start of the scheme there were about 25 specialist MS centres in the UK. There are now more than 70 and the number of neurologists specialising in MS has increased. • The RSS has funded education for all MS specialist professionals. • The number of therapists specialising in MS has increased and multi-disciplinary teams have been formed to provide support to everyone with MS. Much of this has been made possible thanks to investment by the five funders, namely the DH and four companies, Biogen Idec, Bayer, Merck Serono and Teva Aventis. In the role of administrator to the RSS, we have seen the Scientific Advisory Group struggle with many of the complexities of the scheme, but we remain convinced of the benefits of the scheme and are committed to ensuring that everyone with MS gets the treatment and services they need.
News from the MS Trust M S IN F OR M AT I ON
MS information you know you can trust Search for multiple sclerosis on the internet and you’ll find a wide range of web pages, chatrooms and social media sites offering a mix of news, opinion and hearsay. How can you know if you’ve found information you can trust? The Information Standard is a programme run by NHS England for all organisations producing health and care information for the public. The MS Trust has been part of the scheme since 2011 and we’re proud to say that this year we were once again accredited. In March a team from the Information Standard came to our offices and took a rigorous look at our books, factsheets and website to make sure
everything we produce is clear, accurate, balanced, evidence based and up to date. They checked that: • we have a defined and documented process for producing high quality information • we use only current, relevant, balanced and trustworthy evidence sources • we understand our users and we user-test our information • we double-check our end
products and clearly identify any conflicts of interest • w e take on board user feedback • w e review our products and processes on a planned and regular basis This means when you read our books or look on our website and see the Information Standard mark you know that our information can be trusted. See all our publications at mstrust.org.uk/pubs
Coming soon from the MS Trust We’re currently working on several new MS information resources that will be available in print and online later in the year. Keep an eye on mstrust.org.uk or future issues of Open Door for more details. Making Sense of MS
Secondary progressive MS
We know that being diagnosed with MS can be a particularly challenging experience. Even now, when there is so much information available, finding what’s right for you at the right time can still be difficult. To meet this challenge we’re working on a new resource designed to give people who’ve just been diagnosed the basic information about the condition and help them to get more on the topics that are important to them.
The change from relapsing remitting to secondary progressive MS can also be a difficult time, yet it’s a relatively neglected area. That’s why we’re working on a resource that will help you understand exactly what secondary progression means, how management of this type of MS may change and some of the research looking for new treatments.
Disease modifying treatments Several new drugs for relapsing remitting MS have become available in recent years. While this has expanded choice, balancing the benefits and risks of treatments and deciding on the most suitable approach for you is becoming more complicated. We’re working to update our book and web pages with the latest information so that you can make informed decisions about your options.
Open Door May 2014 Freephone 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 weekly email mstrust.org.uk/e-research
D R U G S F O R M S P ROGRES S ION
Can high dose simvastatin help people with secondary progressive MS? Currently there are no disease modifying treatments available for people with secondary progressive MS (SPMS). This study looked at whether a high dose of simvastatin, a drug licensed in the UK for use in heart disease and stroke, might be an effective treatment option.
Authors Chataway J, et al Title Effect of high-dose simvastatin on brain atrophy and disability in secondary progressive multiple sclerosis (MS-STAT): a randomised, placebo controlled,phase 2 trial Journal Lancet 2014 Mar 18 [ePub ahead of print] >> Read the full study: tinyurl.com/simvastatin-ms
The study 140 people with SPMS in London and southeast England took either a high dose of simvastatin (80mg a day) or a placebo for two years. At the start of this phase II trial, all participants were aged 18-65. On the Expanded Disability Status Scale (EDSS) participants ranged from being able to walk without aid for 500m (EDSS 4.0) to using two walking aids such as crutches or sticks to walk 20m (EDSS 6.5). Through the trial MRI brain scans were used to measure brain volume, levels of disability were assessed using the EDSS and participants completed several questionnaires that examined the impact of MS on their daily lives.
The results In the group that had taken simvastatin for two years, MRI scans showed that the reduction in brain volume was significantly less when compared to those that had taken a placebo. The researchers
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caution that just because a difference is found on a brain scan, this does not necessarily mean that there is a noticeable difference in a person’s symptoms and quality of life. Although the study did find that simvastatin treatment also appeared to slow down the rate of disability progression as measured by the EDSS, no change was found in the frequency of relapses and other functional measures such as cognition and dexterity, so the effects need further study.
The future The authors conclude that high doses of simvastatin might be a treatment option for SPMS. However there is not sufficient evidence from this small study alone to confirm that it would be an effective treatment. Further larger phase III clinical trials would be required to investigate the use of simvastatin. These trials would also assess the safety as well as the effectiveness of treatment.
Statins such as simvastatin, do have a number of side effects and these can increase with increasing dose. One of the more serious side effects is muscle injury, causing weakness and pain (myopathy), which is estimated to affect between 1 in 1,000 and 1 in 10,000 people. So it is currently unclear whether simvastatin will eventually become a treatment for MS.
Slowing MS progression Slowing the progression of MS is a focus area for drug trials and there are a number of studies looking at potential treatments for SPMS. As well as drugs that are currently licensed such as natalizumab (Tysabri) and simvastatin, there are also several drugs that are still experimental that are being investigated, such as masitinib and siponimod. Further details on these studies can be found at mstrust.org.uk/drugs
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To read more about how drugs are developed and clinical trials visit mstrust.org.uk/did
Research update M S A N D M E D I C I N ES
What are the risks of using complementary and alternative medicines? Many people with MS use complementary and alternative medicine (CAM) treatments such as acupuncture, Chinese medicine and homoeopathy in the management of their disease. However they’re often also using conventional drug treatments (CDTs). This study looked at whether people with MS understood the risks that their CAM might interact and interfere with their CDT.
Authors Skovgaard L et al Title Use of bodily sensations as a risk assessment tool: exploring people with multiple sclerosis’ views on risks of negative interactions between herbal medicine and conventional drug therapies Journal BMC Complementary and Alternative Medicine 2014;14(1):59
The study The researchers surveyed members of the Danish MS Society. Just over half (52 per cent) of the 1,865 people with MS who responded in the survey had used CAM within the past 12 months and most of these people (90 per cent) had used CAM at the same time as conventional treatments. 11 of the survey respondents were then selected for in-depth follow-up interviews to explore their views. All 11 were women, aged between 31 and 39, with a high level of education. They were interviewed for between 35 and 65 minutes, with questions focused on their use of CDT and CAM.
Opinions The participants felt that using CAM and CDT together was safe and risk-free. The participants said they thought CAMs, such as herbal medicine, were “nonchemical” and “natural”. They also used their body sensations
and experience as an indicator of safety, so if they didn’t feel ill after using the CAM they concluded it was safe.
Understanding the risk The researchers suggest that it appears that people using CAM alongside their conventional treatments have given little thought to the potential risks of doing so and the possible negative interactions that could occur. Those questioned had also not received advice on the risk from either their CAM practitioner or their medical doctor. The researchers highlight the need for communication between people with MS, their health professionals and CAM practitioners, to make sure CAM is used safely.
Find out more about complementary and alternative medicine There is a wide range of complementary and alternative treatments available and some people find them helpful. There is a widespread belief that CAMs must be safe since they are ‘natural’, but this is not necessarily true. CAMs can have side effects and can interact with conventional therapies, whether being taken for MS or for other conditions. Therefore For more it is important that information on you tell your health CAMs see professionals if mstrust.org.uk/ you are taking or cams considering using any CAMs, so any potential interaction or risk can be discussed.
Open Door May 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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Research update MS AND SEX mensguide.07.11.10K
How common is sexual dysfunction in MS? Sexual activity is an important part of life for many people and contributes to their quality of life, the quality of their relationships and to their self-esteem. We know that MS can affect aspects of sexual function in both men and women. These studies looked at how common these issues are.
a guide for
MEN
Multiple Sclerosis Trust Spirella Building, Bridge Road Letchworth Garden City Hertfordshire SG6 4ET T 01462 476700 E info@mstrust.org.uk www.mstrust.org.uk
Simon Webster
Registered charity no. 1088353
Authors Lew-Starowicz M, Rola R Title Sexual dysfunctions and sexual quality of life in men with multiple sclerosis Journal Journal of Sexual Medicine 2014; 11 (5):1294-1301 >> Read the abstract: tinyurl.com/sex-ms-men Authors Lew-Starowicz M, Rola R Title Prevalence of sexual dysfunctions among women with multiple sclerosis Journal Sexuality and Disability 2013;31(2):141-153 >> Read the full study: tinyurl.com/sex-ms-women
The participants 137 women and 67 men with MS from Poland took part in these studies. The participants were interviewed, underwent neurological examination and completed gender-specific questionnaires, which explored aspects of their sexual activity.
The survey The results showed that more than three quarters (83 per cent) of the women surveyed were affected in at least one aspect of sexual function, such as decreased desire or sensation. In men, just over half (53 per cent) of the participants reported erectile dysfunction and just over a quarter (27 per cent) had decreased sexual desire. Although sexual dysfunction was common, only 4 of the male (6 per cent) and only 3 (2 per cent) of the female participants had ever discussed their sexual concerns with a doctor.
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The severity of sexual dysfunction had an impact on sexual quality of life, but the symptoms reported had no relation to age, time since MS onset or level of disability, suggesting there were many factors involved.
The suggestions The researchers found that sexual dysfunction was common in people with MS and, although it had a significant impact on their sexual quality of life, the majority had not discussed their concerns with a health professional. The authors suggest that health professionals should pay more attention to sexual concerns so that people with MS are offered appropriate support and advice.
Sex & MS
Managing sexual issues in MS Sexual difficulties can be experienced at any time during the course of MS. They may be the result of other MS symptoms, including bladder symptoms, pain, fatigue or spasticity. However not every sexual issue is due to MS and many of the difficulties described by people with MS (such as anxiety, or the side effects of medication) also occur in the general population. The MS Trust has two resources for people with MS and their partners. These look at how sexual issues can be managed, include suggestions on discussing sexual difficulties with partners and with health professionals, as well as a list of resources and organisations that may help. Sex and MS: a guide for men mstrust.org. uk/sex-ms Sexuality and MS: a guide for women mstrust.org.uk/ sexuality-ms
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Sexuality & MS
a guide for women
Nicki Ward-Abel Janice Sykes
These books can be read online, downloaded or ordered from page 23
Rehab in MS: what could it mean for you? This June the MS Trust is bringing Europe’s largest conference on MS rehabilitation to the UK for the first time. We hope this will be a big step towards better rehab services for everyone affected by MS. But what exactly is MS rehab? Over the next few pages we speak to health professionals and people with MS to find out how it could work for you.
What is rehab?
It’s clear that we need to raise the profile of rehab services in MS. We need to promote existing services so that more people are able to get the benefit. But we also need to champion what rehab can do for you and encourage more health organisations to offer better, local support.
In 2011 the MS Trust and the Royal College of Physicians published the third of our audits of NHS services for people with MS in the UK. In some ways it showed a great improvement. In 2011, 93 per cent of people questioned said they could access an MS specialist nurse. This still isn’t perfect, but it’s a sign of the progress that’s been made since the first MS nurses were appointed. But less than half of those questioned thought they had access to specialist rehabilitation services.
What’s the MS Trust doing?
Many people might not even be sure what a rehabilitation service is. In short, rehabilitation (or ‘rehab’) in MS means all the things that might help you solve the everyday problems you face at home and work. It’s also all the people who can offer support and help you set practical, positive goals for living your life the way you want to. These might include physiotherapists, occupational therapists (OTs), speech and language therapists, dietitians, clinical psychologists and counsellors.
If you’ve been a friend of the MS Trust for a while you’ll know about all the work we do to support, train and champion MS nurses. But did you know that we also provide vital support for a whole range of specialist rehab workers? The MS Trust Annual Conference is a valuable event for specialist nurses, but it’s also attended by physiotherapists, OTs and a whole range of rehab professionals. In 2003 we helped set up Therapists in MS (TiMS), a group that brings together a wide range of health professionals, including physiotherapists and OTs, to improve services for people living with MS. You can read more about TiMS on page 14. Over the past year we’ve been expanding our work promoting rehab services. Last year we published a report looking at the benefits of allied health professionals (physios, OTs and others with particular expertise in MS). This report has now fed into the second phase of our ongoing GEMSS project, helping MS services measure and show the difference their work
makes to people with MS. We’ll be reporting on this project next year – you can find out more at mstrust.org. uk/gemss And this summer we’re proud to co-hosting RIMS, Europe’s leading rehab in MS conference, with the MS Team at the University College London Hospital. This is the first time the conference has come to the UK and we believe it could lead to real improvements in the rehab services available to people living with MS in the UK.
“My whole rehab team are like a breath of fresh air. The physiotherapists deserve medals, they both go above and beyond their duties to help you.” Nomination from the MS Trust’s My Super Team campaign
Making rehab work for you Over the next four pages we’ll be speaking to some of the leading voices in rehab in the UK: the pioneers who set up the first services, the researchers who’ve developed new ways of thinking about rehab, the practitioners who make a difference to people every day, and people living with MS, who have experienced firsthand the difference rehab can make.
Open Door May 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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MS and rehab
Practical answers to everyday problems Rehab professionals can help you work out ways of dealing with some of the common problems MS can cause and support you to draw up practical goals for living the way you want to. On these pages some of the UK’s leading experts talk about how MS rehab has changed over the years and how it can help you today. “I started my work in MS in the early 80s,” says Professor Alan Thompson, one of the world’s leading authorities on MS, and the founder of the Neurorehabilitation Unit at the National Hospital for Neurology and Neurosurgery in London. “This was in the days before MRI scans, before MS treatments. A lot of my research then, as it is now, involved people with progressive MS, who I would see every couple of weeks. I saw them getting worse and nobody really doing anything to help.” “So my commitment to rehab in MS was about trying to manage this progression. An opportunity arose in 1990 to take on the rehabilitation programme at the National so that’s when I started establishing the modern service. It had a long gestation. There was a small rehab unit in woodlands in East Finchley at the time. This was the old concept of rehab: something done by someone else, somewhere else, in a leafy, relaxed place. I wanted to make rehabilitation much more rigorous: I wanted to introduce research and measurement. And that meant bringing people who needed rehab right into the heart of Queen Square. We eventually took over an entire wing of the hospital.” The rehab unit Professor Thompson set up now consists of a multidisciplinary team, including a neurologist, physiotherapist, occupational therapist, speech therapist, psychologist and rehabilitation specialist nurse, who work together to help people with MS and other neurological conditions such as cerebral palsy or stroke. “We work to help people maintain the best possible quality of life,” says Professor Thompson. “It’s an educational process, that’s a key point. It’s not a therapy process. It’s an education process where you support people to take on responsibility for their own health.”
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Managing day-today issues The unit is now led by Dr Diane Playford. “I always wanted to work in rehab,” says Diane. “The very first patient I worked with when I was a student had very bad rheumatoid disease. He told me he could deal with the disease, but he couldn’t deal with the thought of his wife having to clean his bottom for him. The OTs worked with him to solve that problem and I was very struck by that. For me it was a story about the impact disability has on people’s dayto-day lives.” So what does rehab practically mean for people with MS? “It’s about managing dayto-day issues. I’m particularly interested in supporting people to remain in work. Although it doesn’t always feel that way, work is actually good for us. I wouldn’t want to make grandiose claims for rehab but I think we can do things to help people retain their jobs.”
Early focus Jenny Thain is Clinical Specialist Physiotherapist at the Walton Centre, a specialist neuroscience NHS Trust in Liverpool, where she’s been instrumental in setting up their support programme
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for people with MS. “We see patients from when they’re newly diagnosed right the way through their MS. Many people think of rehab as being admitted to a ward. But it can be any help or support that we give people: we give them advice, perhaps exercise programmes that they can then carry on and do themselves. That’s still active rehab. “There has been a change in rehab over the years,” says Jenny. “In the past it was seen as something for people with severe disability. But now we’re encouraging people to get rehab much earlier. We focus on self management very early on, and then help people dip in and out of more formal rehab services as they need to. “With our newly diagnosed patients we look at things like posture, health and general wellbeing, cardiovascular fitness. We encourage people to get into a regular routine of activities they enjoy to maintain their general health. We also try to pick up on more subtle difficulties like posture or mild spasticity, so we can focus on that early. Fatigue is obviously a big symptom and a lot of our early patients have problems with that, so we give fatigue management advice.”
MS and rehab WHO CAN HELP? MS rehab services vary depending on where you live. If you have an MS nurse, they are often the best people to ask what’s available locally. If you have an MS therapy centre near you they might also be able to help you find a physiotherapist or other rehab professionals. You might need a referral from your GP to access some of these services.
1 Raising the profile It’s clear that we need to raise the profile of rehab and how it can help people with MS. “There’s still quite often a certain level of ignorance about what is possible,” says Professor Thompson. “But I have never ever met anybody where there wasn’t something we could do to improve their situation one way or another.” But raising the profile remains a challenge. “I think we need to raise the profile of rehab full stop, across the boards – never mind just with MS,” says Dr Playford. “It is absolutely right that money goes into the front end, to modify disease, prevent disease and treat disease. But rehab tends to get thought about afterwards. I think we need a culture shift across the UK. If you look at our ageing population, if we accept the experiences we will all have to a greater or lesser extent, what we need to do is embed rehab in the whole of healthcare.”
The MS Trust is co-hosting RIMS (Rehab in MS) 2014 this summer. This European conference offers neurologists, MS nurses, therapists and other rehab professionals the chance to hear the latest research and practice on how to help people living with MS to lead full, active lives. Professor Thompson himself will be delivering the RIMS Honorary Lecture on the future for rehabilitation in MS. “I think that this year’s RIMS conference is unique,” says Professor Thompson. “I’ve always been very impressed by the MS Trust’s Annual Conference for health professionals: it’s incredibly engaging and educational, but in a quite dynamic way. With RIMS, the interaction of the MS nurses and therapists with the rehab group could have real impact on understanding of what’s available, how that should be targeted, and the consequent benefits. I’d be very surprised if that didn’t have a real impact on people with MS.”
2 3 4 5
Physiotherapist A physiotherapist can help you work out ways of staying fit and active. This can be helpful in managing problems with balance, spasticity and fatigue.
Occupational therapist (OT) An OT can help you solve everyday problems by making suggestions for changes in lifestyle, or useful equipment and adaptations at home or at work.
Speech and language therapist Speech and language therapists can help you if you have problems with slurring or difficulties remembering words. They can also help if you have problems swallowing.
Dietitian A dietitian can help you look at what you’re eating to help you manage MS issues such as fatigue or bowel and bladder problems. They can also help if you have problems swallowing.
Clinical psychologist A clinical psychologist can help you manage emotional issues that might arise from your MS and help you deal with any cognitive symptoms you might have.
To find MS health professionals near you see our map of local services mstrust.org.uk/ map
Open Door May 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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MS and rehab
How a physio could help you The MS Therapy Centre in Norwich, like many therapy centres around the UK, offers a range of rehab services that could support you to continue living a full, active life. Wendy Hendrie works at the centre as an MS Specialist Physiotherapist. Here she explains exactly what practical support she can offer and the difference it can make.
I work at the MS Therapy Centre in Norwich two days a week. If you have MS you can contact the centre directly or you can be referred by other health professionals such as your GP, neurologist or MS nurse. Physiotherapy at our centre consists of two integrated services: individual assessments and group exercise classes. The individual assessment gives us the opportunity to get to know you, identify your physical problems and listen to the issues that are affecting your life. From this we work together to set goals and try out a number of possible solutions. We might try walking aids or splints, or have a look at some of the medications that can affect mobility, such as those for spasticity.
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We also encourage people with MS (and their families) to find out about MS so that they know how to deal with their condition on a day-to-day basis. We often recommend some form of exercise-based rehab. This can help you improve function after a relapse or if you’ve got out of shape. It can also help you stay as fit as possible! Research has shown that exercise can improve your mobility, balance, strength, coordination and fatigue if you have MS and should be done on a long-term basis. We know that making exercise or activity part of your life can be difficult so we try to make sure that all our suggestions are tailored to the people’s needs and, also, their personalities.
For example, we have started weekly exercise classes at the centre and these have proved very popular. We’re fortunate to have a large gym with a variety of exercise equipment. Each person works to their own ability with frequent rests and drinks. Friendships form, people encourage each other and many find the social aspect of the group as important as the exercise. Supporting people with MS to stay active can be a challenge. Diagnosis can be a real shock, and some people give up activity soon after diagnosis. Sitting for long periods can weaken your muscles which in turn might make your MS symptoms appear worse than they really are. Of course, keeping active can be harder if you’re struggling with fatigue or if you can’t get to local fitness centres. However, activity can take many forms. As a physio can tell you, housework, gardening or even standing to wash-up can all be good ways of keeping your muscles strong. There is no doubt that staying active is good for everyone living with MS. The most important message I can give you is: once you have found an activity you like doing, stick at it!
Open Door May 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
Wendy is Co-Chair of Therapists in MS (TiMS). TiMS formed ten years ago as a collaboration between the MS Trust and therapists from around the UK who share a special interest in the management of MS. TiMS members include physiotherapists, occupational therapists, speech and language therapists, dietitians and psychologists. They aim to improve services for people with MS within the UK by promoting and developing the role of therapists. They work as the voice of MS therapists at a national policy level, share and promote best practice and encourage and publish new research. They also organise study days and have contributed to MS Trust resources on exercise, fatigue and posture (see the back page for more details).
MS and rehab
How rehab helped me...
Paula’s story
Peter’s story
I am 67 years old and I have had MS for over 30 years. I live with my husband who is nearly 80. Thankfully he is fit and well and between us we manage most things. He does the cooking and housework but I help with the dusting. I have been in a wheelchair for many years but can stand on a turning aid, with my husband’s help, to go to the toilet or get into bed or the car. However, my standing had been getting much worse and moving me from one place to another was getting very difficult for my husband. A few months ago my family persuaded me to visit the physiotherapist to see if anything could be done about my standing. Wendy, the physio, gave me a really thorough assessment and then stood me in a standing frame. I felt so upright, it was lovely; in fact I cried the first time because it felt so nice to be up straight like I used to be. At first I couldn’t let go with my arms, but after a few weeks my back got stronger and I was able to let go of the handrails. Lately, I have been trying to hold myself up without the strap. It’s hard work but I can feel my back and tummy muscles working again. Now I can turn myself over in bed again which is a great help to my husband and it’s getting much easier to stand up at home. My aim is to be able to stand, just for a few minutes, when my son gets married in the autumn.
Before I saw a physiotherapist I had got into a terrible state with my MS. I was diagnosed ten years ago and had to give up work as a bricklayer. Giving up work is horrible for someone in their forties with a family to support. I had been to my GP over the years with lots of different symptoms. Each time he had put me on another tablet. I started feeling so tired all the time that I just sat and watched TV all day. As time went by my balance got worse, so sitting down felt safer than walking. I felt absolutely useless and really depressed. When I came to see Wendy she asked me about my symptoms and looked at all the tablets I was taking. She thought that some of them might be making me feel tired. She also told me that sitting down all day had probably made me weak as I was hardly ever using my balance muscles. The GP agreed to let her cut down the tablets and she also got me using my balance muscles again in an exercise class for a few weeks. I found it hard exercising at home, so I started doing jobs around the house and simple things like standing up from the chair without using my arms – something I couldn’t do when I started! Coming off or reducing some of the tablets made a real difference to the tiredness levels and I found that the more active I was the better I felt. Now I have taken on a lot more jobs at home, which really helps the family, keeps me strong and feels great. I have also taken up fishing – great for the balance!
Open Door May 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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FOC U S O N
MS and pregnancy MS is most often diagnosed between the ages of 20 and 40, when many people may be thinking of having a family. In this article Janice from the MS Trust information team explains what you might have to think about if you have MS and you’re considering having a baby.
Planning for Pregnancy What’s the risk of MS developing in children? MS is not hereditary. The majority of people who develop MS have no previous family history of the condition. However, having a relative with MS increases the risk of developing MS. In the UK, the risk of developing MS in your lifetime is about 1 in 330. Family studies have found that if a parent has MS, the risk of the child developing MS is about 1 in 40. Having a particular combination of genes may make it more likely that someone will go on to develop MS but this in itself doesn’t cause the condition. It is believed that other environmental factors trigger the body to react in a way that starts the development of MS. Some of the factors that are being investigated include infections, low levels of sunlight (and hence vitamin D) and smoking.
Does MS affect fertility? MS does not directly affect fertility but symptoms such as a fatigue, spasticity or erectile dysfunction could have an impact. Difficulties can often be resolved with support from your partner and advice from health professionals. The MS Trust books Sex and MS: a guide for men and Sexuality and MS: a guide for women look at how MS can affect sex and give positive and practical solutions. In the general population, about 1 in 10 couples may have difficulty conceiving so it’s possible that a couple where one partner has MS may have fertility problems that have nothing to do with MS. Research has suggested that some treatments for infertility can increase MS activity, such as relapses, but it is not known if this is a direct effect on MS or indirectly caused by the emotional and physical stress of treatment.
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Should I stop taking medicines while trying to conceive? General medical advice is to avoid drug treatments as far as possible when planning to become pregnant, during pregnancy and when breastfeeding. For both men and women with MS this will mean reviewing the medicines you are taking with your GP and MS team and weighing up the benefits and risks of stopping, continuing or switching to an alternative treatment. There is little information about pregnancy outcomes if fathers are receiving treatment. A recent study reported that birth weight and duration of pregnancy were not affected when would-be fathers were taking beta interferon drugs or glatiramer acetate around the time of conception. It is generally recommended that women taking one of the disease modifying therapies should stop taking the drugs three months before trying to conceive but it’s important to discuss this with your MS team. For some women, the benefits of remaining on a treatment may outweigh the risks. Teriflunomide (Aubagio), a new tablet treatment for relapsing remitting MS, remains in the blood for up to two years. Women wishing to become pregnant need to stop taking the drug well ahead of starting a family, although safe blood levels can be reached more rapidly by taking certain medicines. If you become pregnant while taking medication it is important to contact your MS nurse or neurologist as soon as possible. You can then consider how best to stop medication as some drugs need to be reduced gradually to prevent unpleasant withdrawal symptoms for both mother and baby.
Open Door May 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
Ex pl ai n ing MS
During pregnancy Will MS affect my pregnancy?
Can I take medicines during pregnancy?
For most women, MS does not make any significant difference to their pregnancy. A woman with MS is no more likely to experience complications of pregnancy, stillbirth or birth defects than a woman who does not have MS.
All mums are discouraged from taking medicines during pregnancy if possible. A number of medications for MS, both disease modifying drugs and those for individual symptoms, are not recommended for use during pregnancy or when breastfeeding. There may be alternative drugs which are considered safer so talk to your MS team, midwife or GP.
Will pregnancy affect my MS? A woman with MS is less likely to have a relapse during pregnancy, particularly during the last three months. The risk of relapse increases in the six months after the birth. This is thought to be due to changes in the levels of hormones, particularly oestrogen, during and after pregnancy. Pregnancy has no effect on MS in the longterm and it does not hasten progression. After the period of higher risk, the number of relapses will return to the pre-pregnancy level. There is not enough data on pregnancy in women with progressive MS to give an accurate indication of its effect on this type of MS.
Will pregnancy affect my MS symptoms? Many women with MS feel well during pregnancy, however, some MS symptoms may become more pronounced. Hormonal changes, heat sensitivity, difficulty sleeping and carrying the extra weight during later stages of pregnancy will add to MS fatigue. You might find that you need to go to the loo more often and with less warning because of pressure on the bladder from the baby. Any suspected urinary tract infections should be investigated and treated promptly. In late pregnancy, the increasing weight of the baby and changes in posture may make walking more difficult; gentle exercise such as swimming or yoga may help.
Factsheet Pregnancy and parenthood
SPIRELLA BUILDING, LETCHWORTH, SG6 4ET • 01462 476700 • WWW.MSTRUST.ORG.UK • REG CHARITY NO.1088353
Further reading Look out for a follow-up article on childbirth and caring for a newborn baby in the next issue of Open Door.
To order a free copy see page 23 or visit mstrust.org.uk/ pregnancy
The MS Trust publishes a factsheet on pregnancy and parenthood. We also host a blog written by Hellie who has MS and has just had her second child. You can read Baby, MS and Me at www.mstrust.org.uk/interactive/babymsme The University of Coventry hosts the Mums and MS website and community at www.mumsandms.coventry.ac.uk
Open Door May 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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Pra ctical tips P R A C T I CA L TI PS
Tips for managing MS bladder problems Around 75 per cent of people with MS experience bladder problems and these can have a big impact on your everyday life. However it is often possible to treat these and simple management strategies can make a real difference.
Keeping a bladder diary Keeping a diary can give you an overview of how your bladder problems affect you over time. You can share it with your health professionals so you have accurate records of what your bladder patterns are. Write down what you had to drink, eat, any medication you take, when you go to the loo, and any problems with stopping or starting. If you make any changes, for example the amount of caffeine you drink or starting a new medication, the diary can help you to see how this affects your bladder symptoms. There are also bladder diary apps available to use on your smartphone – see store.apple.com or play.google.com
Tips to improve bladder function There are simple lifestyle changes that can make a real difference to your bladder problems.
Food and drink Drinking too much can make bladder symptoms worse, increasing the number of visits to the toilet and the urgency to urinate. On the other hand drinking too little can lead to concentrated urine that irritates the bladder and creates a good environment for infection. The general advice is to drink around one to two litres, or six to eight glasses, of liquid per day (more if the weather is hot or if you’re exercising).
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Food and drink that can irritate your bladder and are best avoided include:
R drinks that contain caffeine (coffee, tea, green tea, hot chocolate can cause irritation directly to the bladder lining)
R alcohol (particularly white wine) R fizzy drinks (carbonated and highly coloured drinks have been shown to make some bladder symptoms worse)
R acidic fruit and juices (including grapefruit, orange, lime, lemons and tomatoes)
R spicy foods (studies suggest that people who avoid spicy foods, like curry, chilli pepper and cayenne pepper, may reduce their bladder symptoms) Record when you eat or drink any of these and see if they affect you.
Weight If you are overweight this can increase pressure on the pelvic floor muscles and can result in stress incontinence. Your GP or MS nurse can give you info on ways you can manage your weight or find out about exercise options for people with MS.
Smoking Nicotine in cigarettes can irritate your bladder, so this is yet another reason why it’s a good idea to stop smoking. Your GP can you give you info on local stop smoking services.
Open Door May 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
P racti ca l tip s Pelvic floor exercises If you have mild bladder symptoms, pelvic floor exercises can often be helpful. You can feel your pelvic floor muscles if you try to stop the flow of urine when you go to the toilet. The pelvic floor is a sheet of muscles that extend from the tail bone (coccyx) at the bottom of the spine to the pubic bone (at the front). They form the ‘floor’ to the pelvis and support the bladder and bowel. Pelvic floor muscles give you control when you urinate. They relax at the same time as the bladder contracts (tightens) in order to let the urine out. In MS neurological damage can result in weakness to the pelvic floor. However this can also be made worse by other factors such as having children, getting older or having surgery in this region of the body. Both men and women can do pelvic floor exercises.
?
It can be useful to think of questions in advance and take them to your appointment. For example: • How long will it take to see any response?
• When will we review how things are going? • What if the treatment doesn’t work?
• How can I get in touch if I have any problems? Is there a direct number or email?
• do not hold your breath or tighten your stomach, buttock, or thigh muscles
If you don’t understand what a health professional says make sure you ask for an explanation. You can also ask for copies of any letters sent between your GP and other health professionals, including hospital consultants. This keeps you informed and helps you to remember what was said. You should be able to discuss or review your treatment and management at regular intervals or when circumstances change. This can include changing your mind about treatment. It is important to continue with treatment but if it’s not working ask what’s next. It can take some time to find the approach that works best for you.
• when you get used to doing pelvic floor exercises, you can try holding each squeeze for a few seconds
Managing your bladder
To strengthen your pelvic floor muscles: • sit comfortably and squeeze the muscles 10-15 times in a row
It will take several weeks of regular exercise to regain strength in your pelvic floor muscles.
‘Holding on’: bladder training The aim of bladder training is to increase the amount of time between going to the toilet. You gradually increase the time between urinating (this can be just by five minutes). It may take weeks or months to be effective but your continence advisor or MS specialist nurse can put together a timetable to support you to achieve this.
This article is adapted from our new book Managing your bladder which explains why bladder problems can be part of MS and provides a practical approach to their management. It includes comments and tips from people with MS who know what it is like to live with these problems. You can order it for free. See page 23 or visit mstrust.org.uk/pubs
Working with your health professionals Ideally before starting any treatment for bladder problems you should have the opportunity to consider all the different treatment options, ask all the questions you need to and discuss any concerns you may have. It is also really valuable to have realistic expectations of what the treatment can offer and what the drawbacks may be. Knowing clearly what you would like the treatment to achieve can be helpful in ensuring that you and your health professionals are working together towards the same goal.
The MS Trust Continence Question Time As part of MS Awareness Week at the end of April we recorded a panel of MS experts and people with MS responding to some of the common questions about managing bowel and bladder issues. You can watch the MS Trust Continence Question Time online at mstrust.org.uk/continence.
Open Door May 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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G E T I N V O LV ED
A magical experience Karen Walker took part in a skydive for the MS Trust in December last year along with a group of her friends who all have MS. Here she tells us how they went from meeting on an MS course in Sheffield to climbing 13,000ft together in a light aircraft!
The five of us first met on an MS newly diagnosed course, set up by The Royal Hallamshire Hospital in Sheffield in April 2009. Meeting each other has really been invaluable. Although we are five individuals, each dealing with our own different issues with MS, it’s great to have this little network for sharing experiences and supporting each other. We got involved with the MS Trust when we saw they were developing a new resource for people who’ve just been diagnosed with MS (see page 7). We all took part in one of the focus groups to share our experiences.
The bottom fell out of my world I felt it was important to get involved in the project because I know what it was like when I was first diagnosed with MS. The bottom fell out of my world and I didn’t have a clue what the future had in store for me, or where I should turn. I felt so alone and lost! When I took part in the hospital’s newly diagnosed course I had doors opened to a wealth of information, support and opportunities to meet other people like myself. I know how important that all was for me in the start of my new life with MS, so I wanted to share my experience and maybe help others in the future. I wanted to fundraise for the MS Trust for selfish reasons I suppose. The free information they sent was of real value to me. I feel it’s important they can continue to produce this information for everyone affected by MS, so I wanted to give a little back.
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I think it was Mark who suggested doing the Jump in June after he saw it mentioned in Open Door. Some of us are no longer physically able to run a marathon or a fun run, so we thought a parachute jump would be challenging enough. But it took us around two years to actually agree a date to jump!
A new goal
The feeling of falling
Before we did the jump our and falling and falling emotions ranged from extreme was magical! It is one of nerves to excitement. I don’t the best experiences I’ve think it was something any of ever had. us had ever considered doing before, apart from Sarah who had already jumped twice. I guess doing the parachute jump is something positive that’s come out of having MS. I was a keen runner before my diagnosis and having that taken away from me was devastating, so having a new goal helped give me some focus. Together we raised over £2,700 and we all had different ways of raising the money. I personally kept dropping subtle hints to family and friends about the Virgin Money Giving website I’d set up. I also wrote an article and posted it on the intranet at work. My dad held a fundraising night with his friends at his local, and my mum asked people not to give her gifts for her seventieth birthday but to donate to my fundraising efforts instead.
Open Door May 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
Get i nvolve d
Get involved! MS Circuit Challenge at Goodwood A great day out for all the family on 18 May, including a 50 mile cycle challenge around the motor circuit and a fully accessible fun event. mstrust.org.uk/goodwood The Sheffield Jump Squad, from back row left: Mark Mather, Tracey Blanshard, Claire Eley. From front row left: Sarah Medway, Karen Walker My twin sister got people to sponsor her for a 10K run and my partner Jon’s mum asked friends and neighbours for donations. Tracey didn’t want to do the jump herself, but she was amazing at organising sponsorship and promotion. She managed to get articles published about us in local papers and magazines and even got us an interview on Radio Sheffield.
Absolutely amazing The jump itself was absolutely amazing – indescribable! Sitting on the edge of the plane waiting to jump was superb. Looking down at how far we were going to fall was fantastic and terrifying at the same time. The feeling of falling, and falling, and falling, and falling was literally breathtaking (not to mention loud) as I ‘rushed’ through the air at around 200 mph with my stomach in my mouth. The contrasting quiet that followed as soon as the parachute was deployed and I ‘floated’ to the ground was simply magical! We all met up after the jump and discussed whether we would set ourselves another goal in the future. We all agreed that we’d love to do something else to raise more money, but we’ve yet to decide what that is going to be. It might have to be something less physically challenging, but we will be doing something. Watch this space!
Experience the magic for yourself at an airfield near you by taking part in the MS Trust’s Jump in June month! Your skydive will be free if you raise £395 in sponsorship. Call 01462 476707 or visit mstrust.org.uk/jump to book.
My Garden Party Could you hold a tea party, coffee morning, barbecue or open day in your garden in support of the MS Trust? Contact us for a fundraising pack. mstrust.org.uk/mygarden British 10K London Run Wear your MS Trust T-shirt with pride and run 10K through the streets of London alongside 25,000 others on 13 July. mstrust.org.uk/british10k Bupa Great North Run Run the famous 13.1 miles from Newcastle to the coast at South Shields on 7 September, in the world’s biggest half marathon. mstrust.org.uk/greatnorth Zip slide off the Tyne Bridge Due to popular demand we’re running another Tyne Bridge zip slide on 18 October! Places are limited so don’t put off booking your spot. mstrust.org.uk/zipslide The Lapland Husky Trail Drive your own team of spirited Huskies 250km across the frozen Arctic wilderness from northern Norway into Sweden, from 28 March to 4 April 2015. mstrust.org.uk/huskytrail
To find out more about supporting the work of the MS Trust call 01462 476707 or visit mstrust.org.uk/getinvolved
Open Door May 2014 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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M S P E RS P E CT I V E
Magnetic imagery Rod McLaren is a writer and artist who was diagnosed with MS last year. Ahead of this year’s MS Trust Secret Art Show, Rod considers the challenges of depicting an ‘invisible disease’. Modern neurology started with drawing. Santiago Ramón y Cajal would spend his mornings examining black-stained cell samples under the microscope. In the afternoons he drew his observations from memory, spidery drawings on paper in black ink. He drew optic and cerebellar cells, brain nerves. He borrowed botanic names for the cellular structures he saw – rosettes, thorns – and rendered them with both the naturalist’s specificity and the explorer’s delight. Cajal had wanted to become an artist, but those of us with MS should be grateful his father pushed him toward medicine. By the end of the nineteenth century he led the field. His work was the foundation of the neuron doctrine, a scientific leap that showed that the nervous system is made of numberless neurons – discrete, connected, communicating cells. Images have been central to neurology ever since. In the diagnostic phase, we are magnetically imaged as smoky grey MRIs, gadolinium inking our spinal fluid, we stare at flashing chessboards to test our eyes. Diagnosis requires an aesthetic judgement by our consultants. In the MS literature, our prognosis is a line on a graph whose peaks and troughs describe a possible but unpredictable future health trajectory. The uncertainty asks for a drawn line. Neurology’s art subtracts to illuminate: Cajal’s drawings and MRI images are a way of discarding data, of filtering down
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Purkingje cells drawn by Ramón y Cajal, 1899 and Rod’s contribution to the Secret Art Show, 2013
to the good information. It’s analogous to the working of the neural system itself, the brain filtering the neural flood down to manageable information. Our experience of MS is at times impressionistic. Cognition modulated, senses altered: bleached, rippling, blurry, dancing vision in bright light and in the heat. The wobbling ground falling away under our feet. These, heat, fatigue and other invisible symptoms are explored in a new Australian photographic project, Seeing MS (seeingms.com). The commissioned photographs tend towards metaphor – spasticity is an image of two feet and a walking stick in a landscape of forbidding banana skins – and the user-submitted ones are illustrative – ‘this is what it’s like to have blurred vision’. Neurological disorders also inspire art. Katherine Sherwood learned to paint left-handed after a stroke; the results were bolder than before, and she has featured Cajal’s drawings in her works.
Dundee artist Kirsty Stevens is turning images of lesions into rendered 3D printed objects. Cradle your lesion that you may love and know it better. And art can give something back. The MS Trust’s Secret Art show raises funds to support everyone affected by MS. For last year’s show, I thought of Cajal and the shape of nerves, and quickly drew a tree in red ink and one in blue. Mine were more diffuse than Cajal’s confident nerves, the trees dissolving into the landscape somewhat. Next year, I’d like to have an MRI taken of my brain while it looks at an MRI of my brain. There will be hundreds of good pictures by top artists for sale for just £45 in the show. Pick up a bargain and The Secret Art support the MS Trust’s Show opens for vital work. viewing on 23 June.
Open Door May 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
To find out more visit mstrust.org.uk/sas
Information from the MS Trust For a full list of resources or to read online visit mstrust.org.uk/pubs
Books MS and me: a self-management guide
At work with MS
Are you sitting
The kids’ guide to
comfortably
MS
MS explained
Disease modifying drug therapy: new edition
Sex & MS: men
Sexuality & MS: women
Managing your bowels
Managing your bladder
Falls
Living with fatigue
Alemtuzumab (Lemtrada)
Vitamin D
Pregnancy & parenthood
Pain
Laquinimod
Cognition
Diet
Stem cells
Clinically isolated syndrome (CIS)
BG12 (Tecfidera)
Depression
Factsheets
DVD
Move it for MS – a DVD of exercises for people with MS
MS Trust emails
MS Trust supporter news
MS Trust weekly research update
MS Trust weekly news alert
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Staying active
StayingSmart
A directory of sports and leisure activities for people with MS. Includes an A to Z of activities and personal stories from people with MS. Web only
A website for people with MS who experience cognition problems. It offers a variety of tips to help you build confidence in managing difficulties and a chance to share personal experiences. Web only
mstrust.org.uk/stayingactive
Stay active At work with MS
At work with MS managing life and work
Gail Townsend Lynn Fox
Second Edition
Explores how to achieve a successful worklife balance. Includes information on how MS might affect your work, your employment rights and answers many other work-related questions you may have. Book and web
stayingsmart.org.uk T20835 Tips for Living with MS:T20835 Tips for Living with MS
8
Provides practical ideas to help manage fatigue, one of the most common symptoms of MS. As well as looking at how to maximise your energy levels, it suggests ways to use energy more effectively. Book
15/10/08
09:26
Cognition Factsheet Cognition
Page 2
Tips for living with MS
TIPS.20K.10.08
Living with fatigue
Discusses the range of cognitive problems that can occur as a result of MS. It looks at strategies to cope with difficulties with short-term memory, concentration, how quickly you can think and talk, and problem solving. Factsheet
Tips for living with MS
The MS Trust is a charity working with and for the 85,000 people in the UK with multiple sclerosis (MS). Our vision is to enable people with MS to live their lives to the full. We provide: • information that is tailored to what people want to know • education for health professionals about what people with MS need • research into better management of MS • support for anyone affected by MS
Multiple Sclerosis Trust Spirella Building, Bridge Road Letchworth Garden City Hertfordshire SG6 4ET T 01462 476700 E info@mstrust.org.uk www.mstrust.org.uk
SPIRELLA BUILDING, LETCHWORTH, SG6 4ET • 01462 476700 • WWW.MSTRUST.ORG.UK • REG CHARITY NO.1088353
Registered charity no. 1088353
Move it for MS
Depression
Exercise DVD for people with MS led by Mr Motivator. Whether you are looking for some gentle stretching exercises or a more energetic aerobic workout, this DVD has something for everyone - includes sections on posture, balance and fatigue, and finishes with a relaxation session. DVD
Explores the main symptoms and causes of depression in MS. It also looks at the different approaches that can be used to treat depression, including talking therapies, cognitive behavioural therapy and drug treatments. Factsheet
Factsheet Depression
SPIRELLA BUILDING, LETCHWORTH, SG6 4ET • 01462 476700 • WWW.MSTRUST.ORG.UK • REG CHARITY NO.1088353
written by and for people with multiple sclerosis
A compilation of practical tips from people who are living with MS. It includes suggestions on saving time and energy, getting around, making the most of benefits and maintaining a positive outlook. Book
Spasticity and spasms Factsheet Spasticity and spasms
SPIRELLA BUILDING, LETCHWORTH, SG6 4ET • 01462 476700 • WWW.MSTRUST.ORG.UK • REG CHARITY NO.1088353
Explains exactly what spasticity and spasms are in terms that are easy to understand. It covers the management of spasticity and spasms in MS through movement and stretching, and looks at drug treatments. Factsheet
To order any of the factsheets, books or DVDs on this page see the order form overleaf or visit mstrust.org.uk/pubs