August 2012 Open door by MS Trust

New from the MS Trust

Order form For a full list of publications visit www.mstrust.org.uk/pubs

DVDs Move it for MS – a DVD of exercises for people with MS (£1) Also visit the Exercises for people with MS pages at www.mstrust.org.uk/exercises

Books At work with MS Disease modifying drug therapy - NEW EDITION Living with fatigue - REVISED EDITION MS and me - a self-management guide to living with MS MS explained MS what does it mean for me? Primary progressive MS exposed Spasticity triggers Also visit the Posture pages at www.mstrust.org.uk/posture

Factsheets Regularly updated, we now have more than 20 titles available including Bladder problems Bowel problems Cognition Pain Sativex Vitamin D

New posture resources Poor posture is a common problem in the general population. Keeping a good posture can be more challenging for people with MS due to symptoms such as weakness, pain and fatigue. Simple changes that can be incorporated into everyday activities can help people achieve and maintain better posture. A new set of web pages, written by MS specialist physiotherapist Helen Conyers, explains what posture is all about, why good posture is so important and includes suggestions to improve posture in everyday situations. The new pages compliment our earlier book Are you sitting comfortably..?, a self help guide to good posture for people who spend most of their day sitting. Both titles can be read or downloaded at www.mstrust.org.uk/posture

Disease modifying drug therapy new edition

Chatroom transcript Secondary progressive MS - managing the transition

Publication leaflet The full list of titles available from the MS Trust All items are free unless stated, but if you would like to make a donation towards our costs, we would be very grateful

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The new edition of our book on disease modifying drugs provides reliable and unbiased information on the treatment options that are available. The book looks at the benefits and the risks of the beta interferon drugs, glatiramer acetate, natalizumab and fingolimod. This edition includes a section of tips and questions to ask your neurologist or MS nurse when discussing decisions about starting or switching treatment. The online version of the book will be reviewed and updated as new information becomes available www.mstrust.org.uk/dmts

Welcome to the summer edition of Open Door

Neuropathic pain

Sport and activity

Travel and holidays

MS recently hit the headlines with the news of Jack Osborne being diagnosed. It is sad for Jack and difficult for his family, but it is also a shame that a ‘celebrity’ connection has to be made before the media pay any attention to what it is like for someone to learn to live with multiple sclerosis. However, despite some of the more sensational headlines, most coverage did aim to get the facts right about MS and hopefully by raising awareness, some good will have come out of this difficult personal situation. We have recently completed our own research project into the information needs of people newly diagnosed and thanks to all of you who volunteered to take part. One of the things that comes through the study is that there is no typical response to a diagnosis of MS and people take time to come to terms with it and work out what they want to know. This is where our Information Team can help - whether it is via our website, email, or telephone they can provide the appropriate information when it is needed, rather than all at once. A full report on the study will appear in the next edition of Open Door. Thank you also to all of those people who responded to our recent Radio 4 appeal. At the time of writing it has raised around £12,000 which at a cost of £5 p.a. is enough to send Open Door to most of the 2,500 people newly diagnosed with MS each year. Best wishes and thank you for all your support

Chatroom transcript The transcript of our chatroom Secondary progressive MS - managing the transition is now available. The conversation covered a range of topics including ways of coping with the transition, the negative effects of some of the words used when describing this type of MS, and symptoms that affected people, such as pain and spasticity. To read the transcript online visit www.mstrust.org.uk/chat

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Inside this issue...

August 2012

www.mstrust.org.uk

Pam Macfarlane Chief Executive

Also inside:

MS Trust Christmas card offer We know some of you like to prepare for Christmas well in advance, so we have enclosed our 2012 Christmas card brochure. We are offering free post and packing until 15 September; you can order now through the brochure or online www.mstrust.org.uk/christmas

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Value of MS nurses

News

Research update

Remyelination in MS

Supporting the MS Trust

New from the MS Trust

The value of MS nurses GEMSS project launched

In April 2012, the MS Trust launched the GEMSS project - Generating Evidence in Multiple Sclerosis Services - a year long project that will help to generate evidence about the tremendous value of MS specialist nurses. Since the first MS nurses were appointed back in 1993, their role has grown. The MS Trust has been at the forefront of developing the MS nurse workforce, providing specialist training as well as a competency framework which describes the range of skills and knowledge that they need to be effective. People with MS consistently say how important MS nurses are in helping them to manage the complex range of issues that they have to deal with. Neurologists and GPs also acknowledge how valuable they are in freeing up doctor time and in providing specialist expertise. But despite this, MS specialist nursing in some areas is under threat. There are still parts of the UK without a nurse, or where the travel distance to the nearest nurse is too far. And more worryingly, in today's climate where NHS budgets are tight, some posts are not filled when people leave. In 2010-11, the MS Trust commissioned a study to assess the evidence for the value of MS specialist nurses. The result was a report, Defining the value of MS specialist nurses, which found that MS nurses are short on robust evidence to show that their services are cost-effective, and that more work is needed to prove this to those who fund NHS services. The report also maps the nurse posts around the country and shows how patchy coverage is.

The GEMSS project is the response to this work. Four MS nurse teams, representing 13 MS specialist nurses, have been selected to take part. The teams reflect the broad range of different MS nurse teams around the UK: hospital and community based, urban and rural, large and small. In May, the teams came together for the first time, outside Sheffield, for an initial training workshop. The project will give the nurse teams involved the skills to measure the impact of what they do and demonstrate this clearly. In addition, it aims to leave a lasting legacy by developing a set of measures of quality and data collection for MS nursing services including a new patient survey. Vicki Matthews, an MS specialist nurse in Southampton for many years and nurse advisor to the MS Trust said, “This project is developing tools and information that I wish I'd had 20 years ago that would have helped me greatly in my job”. Tracy Dean, the newly appointed MS nurse in Dudley, said, “Even though we're from different places, we've all got the same passion, and same desired outcomes for our services”. And Cheryl King, MS nurse at Poole Hospital said, “As a specialist service we can be quite isolated. Coming together it's reassuring to see we share the same problems”. Amanda Cheesley, Long-Term Conditions Advisor at the Royal College of Nursing and part of the GEMSS project steering group, said, “At a time when all NHS spending is in the spotlight, it is vital that the value of specialist nurses is clearly articulated, so that these roles which are so important to improving the lives of people living with long-term conditions can be supported and built upon. We welcome the launch of this innovative project by the MS Trust.” Projects like this can only happen thanks to the generous support we receive from people who donate and fundraise on our behalf. Thank you for helping us to fight for MS specialist nurses www.mstrust.org.uk/nurses Read more about the project at www.mstrust.org.uk/gemss-april-2012

Participants in the GEMSS project training workshop

Read Defining the value of MS specialist nurses at www.mstrust.org.uk/defining-the-value

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News

Information needs research

DH information strategy

Our project on the information needs of people newly diagnosed with MS, mentioned in previous issues of Open Door, has reached the end of the research stage. Thank you very much to everyone who volunteered to take part.

The Department of Health (DH) has published a ten year framework for improving access to information in the NHS and social care, including access to GP records online by 2015, test results available electronically and booking or re-arranging medical appointments online.

34 phone interviews, five face to face interviews and four focus groups took place. In addition, 26 people not selected for interview also submitted information. The majority (84%) were people with MS but family members also contributed. Analysis of the responses is still underway. So far our research has highlighted factors that influence how people seek and use information after diagnosis including: ■ How they seek information in general (not just about MS) ■ Whether diagnosis was a drawn out process and largely expected, or whether it was quick and unexpected ■ What symptoms they are experiencing ■ The time needed to adjust to the idea of having MS ■ Support from friends, family or health professionals in using information, especially when deciding about treatments MS nurses played a key role in providing information and supporting people to use it. A full article will appear in the next issue of Open Door and the report will be available on the MS Trust website. The MS Trust commissioned this research to help us develop better resources for people newly diagnosed with MS in the future.

Radio 4 appeal Chris Jones, co-founder of the MS Trust, presented the BBC Radio 4 Appeal on 20 May. She talked about her own diagnosis over 30 years ago and about wanting better support and information for people with MS. For more on the appeal and to listen to the broadcast, visit www.mstrust.org.uk/radio4

The strategy highlights good, accurate information as vital to making choices about health care. The MS Trust holds the Information Standard, the DH quality mark that enables people to quickly identify reliable sources of high quality, evidence-based information.

Balance and mobility trial The University of Plymouth is running a multi-centre clinical trial investigating different types of physiotherapy exercise for people with MS with mild to moderate difficulties with balance and mobility. To be eligible, participants need to live within 20 miles of one of the following centres: ■ Cumbernauld in North Lanarkshire ■ Plymouth, Tavistock and Newton Abbot in Devon ■ Hewas Water in Cornwall If you are aged over 18 years, are able to walk independently with or without a walking aid, have not had a relapse within the past three months and are not currently participating in another clinical trial, you may be eligible to take part in this study. Participants will undertake one to one exercise sessions with a physiotherapist over a 12 week period together with a home exercise programme. There will also be three assessment sessions. Travel expenses will be reimbursed. For further information contact Esther Fox (trial co-ordinator) on esther.fox@plymouth.ac.uk or 01752 587599. This project is funded by the MS Trust and builds on a pilot project that we also supported. Read more about MS Trust supported research at www.mstrust.org.uk/mstrustprojects

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The value of MS nurses GEMSS project launched

Participants in the GEMSS project training workshop

Read Defining the value of MS specialist nurses at www.mstrust.org.uk/defining-the-value

www.mstrust.org.uk

News

Information needs research

DH information strategy

Keep up to date with MS news Sign up for our weekly email updates at www.mstrust.org.uk/newsalerts

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Research update

Heat sensitivity A study in Australia looked at the effect of heat on symptoms of MS and how people cope. The climate in different parts of Australia varies from tropical to quite similar to the UK. Over 90% reported increased symptoms due to heat. The most common issue was fatigue (84%). About half said that they found it more difficult to do social, household or work activities and self-care. People reported a variety of ways that they kept their homes cool. The most common was air conditioners (82%) although there were 10% who could not afford this. 40% used external window coverings such as blinds and awnings, 80% used internal window coverings, 70% had ceiling insulation, 19% had roof vents and 27% had wall insulation. A separate study in the USA followed 40 people with MS over a year and found that their cognitive abilities (memory and speed of information processing) varied according to the outdoor temperature. Summers MP, et al. Keeping cool: use of air conditioning by Australians with multiple sclerosis. Multiple Sclerosis International 2012;2012:794310. Leavitt VM, et al. Warmer outdoor temperature is associated with worse cognitive status in multiple sclerosis. Neurology 2012;78(13):964-968.

Keeping cool in hot weather can make a big difference to enjoying a holiday. The article on page 12 has some suggestions on how to keep cool. An article on Staying cool with MS appeared in the August 2007 issue of Open Door www.mstrust.org.uk/cool More information about heat sensitivity is available in the A-Z of MS at www.mstrust.org.uk/heat

Therapeutic horse riding There are two forms of horse riding which can help people with MS. Hippotherapy uses the motion of the walking horse to provide therapeutic movement to the rider under the direction of a physiotherapist. The participant does not actively ride the horse, which is led by a handler. Therapeutic horse riding, which was the focus of this study, involves the participant actively riding the

Rehabilitation in MS: conference report

horse. 27 people with MS did two series of ten weekly sessions of either therapeutic horse riding or traditional physiotherapy. The group who undertook therapeutic horse riding showed greater improvement in both their balance and some measures of walking than those who did the physiotherapy programme. MuĂąoz-Lasa S, et al Effect of therapeutic horseback riding on balance and gait of people with multiple sclerosis. Giornale Italiano di Medicina del Lavoro ed Ergonomia 2011;33(4):462-467.

The Riding for the Disabled Association can be contacted on 0845 658 1082 or through their web site www.rda.org.uk. Local groups exist across the country. For more on finding activities, see the article on page 10

CUPID study results THC, one of the active ingredients in cannabis, had no effect on progressive MS according to initial results of the CUPID study. CUPID (Cannabinoid Use in Progressive Inflammatory brain Disease) involved 493 people with progressive MS at centres around the UK. Participants took either THC capsules or placebo for three years. Both neurologist assessed measures and patient reported measures showed no difference in progression between the THC and placebo groups. One observation was that the underlying rate of progression for all participants was slower than had been expected. This is encouraging news and reflects well on how the care now provided by the NHS for people with MS has improved. The MS Trust funded the cost of MRI scans for this study. Read more about MS Trust supported research at www.mstrust.org.uk/mstrustprojects

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What is rehabilitation? The aim of rehabilitation medicine is to help people regain skills and abilities lost due to MS and to help them live their life as fully as possible, minimising the impact of physical, psychological or social difficulties. Although rehabilitation is not curative, it can help you discover abilities you didn't realise you still had. It can help you make the best of, and maintain, functions in order to manage symptoms, promote independence and maintain individual choice whatever your level of disability.

RIMS RIMS (Rehabilitation in MS) is an organisation which aims to raise the profile of rehabilitation in MS in Europe and encourages the exchange of knowledge and best practise between researchers and health professionals. The RIMS annual conference is the major European focus for new research in rehabilitation in MS. The MS Trust's Nurse Advisor, Vicki Matthews, is a RIMS committee member and a key organiser for the conference. The 2012 conference in Hamburg brought together neurologists, nurses, physiotherapists, occupational therapists, speech and language therapists and neuropsychologists from across Europe and beyond. The conference had two main themes - shared decision making and motor rehabilitation.

Shared decision making Shared decision making involves being an equal partner with health professionals in making choices about healthcare. While health professionals have expert knowledge on treatment options and their benefits and drawbacks, individuals are expert on their own needs and priorities. Shared decision making is a fundamental component of rehabilitation in MS, starting from working with health professionals to identify personal goals, through to agreeing a plan of therapies and monitoring progress as the plan is put into action. The conference provided an opportunity for delegates to learn about the latest information, research and ideas on shared decision making. Key presentations on shared decision making included:

Prof Wolfgang Gaissmaier (Germany) - on the challenges of trying to communicate risk to patients making treatment decisions. He described how statistics can be presented in misleading ways and offered a range of techniques for presenting statistics in the most 'transparent' way. Prof Gaissmaier wrote on this topic in the MS Trustâ&#x20AC;&#x2122;s Way Ahead newsletter in July 2011 www.mstrust.org.uk/wayahead Ingrid MĂźhlhauser (Germany) - on the challenges for health processionals in gathering the best evidencebased information to help with decision making. She stressed that people often need time to read and think about evidence and that the evidence needs to be regularly updated, which can be time consuming.

Motor rehabilitation Motor rehabilitation focuses on restoring movement. Increasing evidence suggests that certain rehab strategies not only improve mobility by, for example, building stamina, muscle strength and joint flexibility, but can also have a direct effect on brain structure and function. Neuroplasticity is the process by which the brain is able to adapt and compensate for damage to specific areas. Presentations gave an update on current understanding of neuroplasticity and included: Prof Joseph Classen (Germany) - on innovations in measuring neuroplasticity. This knowledge can help to identify more effective rehabilitation techniques. Prof Alan Thompson (UK) - on structural changes in the components of the central nervous system involved in movement and their regeneration. Studies have shown that people with MS need to use more of the brain in order to do a task. fMRI - a brain scan which measure brain activity - has shown that people with MS who have good cognitive skills have more areas and more intensity of brain activity than people with more cognitive difficulties. Current research is directed towards helping people to harness neuroplasticity.

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Research update

Rehabilitation in MS: conference report

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Why don't normal painkillers help me?

Neuropathic pain the ‘invisible illness’

The answer is simple - because your pain is not just nociceptive pain but is neuropathic as well. Analgesics such as paracetamol and antiinflammatories such as ibuprofen help nociceptive pain but have no benefit in neuropathic pain. Even very strong drugs such as morphine have very limited effects.

Dr Steve Allen, Consultant in Chronic Pain Management, Oxford University Hospitals Trust The man opposite you on the train has one leg in plaster and one arm in a sling. Each time he moves, he grimaces with pain. Few of us could fail to have a degree of sympathy for his suffering. The apparently normal man seated next to him may be experiencing excruciating burning and stabbing pain in his legs and feet as a result of his MS. Who is to know, though? There is nothing to see to explain his pain. Neuropathic pain is truly an invisible illness.

What is pain? All of us have experienced pain. For most that will have been related to some sort of injury or operation. This is called acute or nociceptive pain. As the affected tissues heal, so the pain will go away. Conventional painkillers and antiinflammatory drugs may help and speed up this process. Chronic pain is not simply acute pain but lasting longer - it is a very different clinical and physiological problem. Not only is there constant input of pain over a long period of time, the pain is often periodic in nature - increasing and decreasing for no apparent reason. We now know that the continual pain can actually increase the sensitivity of the pain receptors and can even radically change the way in which the brain and spinal cord process that pain input. For some people, even acute pain from an area of the body unrelated to the site of their ongoing chronic pain can be increased in severity. These processes are termed ‘peripheral and central sensitisation’.

What sort of pain occurs in MS? Nociceptive pain - from damage to muscles and joints - can be either acute or chronic. This may not be directly due to MS itself, but be as a consequence of having MS eg from changes in posture or walking, from the over-use of crutches or a wheelchair or where weakness in one group of muscles leads to strain in another group.

Neuropathic pain affects up to 25% of people with MS. It is a consequence of damage to the myelin that surrounds nerves in the central nervous system. Very commonly the pain is not due to physical damage to the nerve but as a result of a physiological change within it. This means that even when the initial cause is treated or removed, the nerve remains permanently changed and the resulting painful symptoms can become a long-term problem. Once present, neuropathic pain is invariably chronic. Spasmodic pain is frequently associated with spasticity and muscle spasms. It can be severely debilitating. Paroxysmal pain is short unpredictable bursts of severe shooting pain, normally neuropathic in nature. This pain can either be 'spontaneous', where the nerves fire off for no apparent reason, or 'evoked', where a physical movement or stimulus causes the nerve to fire off. Pain is a common symptom for people with MS and many report the effects as being severe1. People with MS usually have a mixture of both nociceptive and neuropathic pains. Many people can learn to cope with the constant background pain, but it is the unpredictable paroxysms that are most distressing. MS pain is commonly under-reported, under-recognised and under-treated.

Why is a part of my body numb but painful as well? Damaged nerves prevent sensory information from reaching the relevant area of the brain. The brain thus thinks that this area of the body is numb. However, many of these same pathways are also made hypersensitive so that the nerve itself can fire off impulses and start the pain impulse to the brain from the area of damage. The result is that the brain perceives pain from an area that it also perceives to be numb - known as anaesthesia dolorosa. In addition, hypersensitive nerves can mean that normally nonpainful stimuli (such as lightly brushing the skin) can be perceived as severe pain - called allodynia.

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We need to choose the right sort of drug for the right sort of pain. Some of these drugs may be associated with other conditions.

Why am I being given anti-depressants when I am not depressed? Clinical depression is associated with insufficient levels of two chemicals in the brain - serotonin and noradrenaline. Anti-depressants raise the levels of these chemicals, which lifts mood and reduces depression. The same chemicals are involved in parts of the brain and spinal cord that deal with pain - the Descending Inhibitory Pain Pathways. Thus for many people, there is a crossover of effects - not only can these drugs act as anti-depressants but can reduce pain as well. The drugs most commonly used are known as tri-cyclic anti-depressants eg amitriptyline, nortritptyline, imipramine. The dosage needed to help chronic pain is only 10 - 20% of that needed to act as an anti-depressant.

Why am I being given anticonvulsant drugs when I don't have epilepsy? In simple terms, people with epilepsy have a hypersensitive focus of nerves in their brain which fire off and cause a seizure. Anti-convulsant drugs reduce the sensitivity of these nerves, preventing them from spontaneously firing off. The oversensitive nerves causing neuropathic pain can similarly be treated. Gabapentin and pregabalin are the most common drugs used. Carbamazepine, the drug of choice for trigeminal neuralgia, is another such drug.

Is cannabis the answer? Sadly, no. Whilst there are some encouraging results from the use of the cannabis based drug Sativex, the evidence as yet is not overwhelming. It is licensed to treat spasticity, and there is also some limited evidence that it reduces central neuropathic pain, but it has no analgesic effect on nociceptive pain.

It’s not just about pain... The perception of any pain is not just the result of a physical stimulus. Many other factors are equally important in the perception of that pain - psychological factors, ongoing stresses, someone's understanding and beliefs about their condition, the environment in which someone lives, etc. We now talk in terms of a 'biopsychosocial' model of chronic pain where each of these factors is given relevant status. For successful management of chronic pain it is essential that individuals, carers and healthcare professionals all fully embrace this concept. Just thinking that a pill, operation or injection will cure it all is neither helpful nor true.

Treatment or management? We can rarely cure chronic pain - the best we can often do is to reduce it. As for many people the expected result of treatment is a cure, most chronic pain specialists now use the term management. This can encompass the whole range of individual therapies that will be needed if we are to fully use the biopsychosocial approach to chronic pain. As with many other complex diseases, people with MS experience a whole range of symptoms - of which pain is just one. Also there will be many different elements to just that one symptom of pain. By carefully teasing out each individual component and providing specific therapy, a satisfactory management plan can then be devised for each individual. It may take time to find the right combination of treatment and dosage to best manage the pain. Optimal therapy always demands understanding, time and patience. Reference O'Connor AB, et al. Pain associated with multiple sclerosis: systematic review and proposed classification. Pain 2008;137(1):96-111.

Further useful reading and contacts Neuropathy Trust - www.neurocentre.com The Pain & Self Care Toolkit - www.paintoolkit.org British Pain Society www.britishpainsociety.org.uk Order the MS Trust factsheet on pain from the back page or visit www.mstrust.org.uk/pubs

Freephone: 0800 032 3839

Why don't normal painkillers help me?

Neuropathic pain the ‘invisible illness’

www.mstrust.org.uk

We need to choose the right sort of drug for the right sort of pain. Some of these drugs may be associated with other conditions.

Freephone: 0800 032 3839

from the surgery and an unknown risk from the cells themselves. Improvement of remyelination using our own resident stem cells is much more likely to be successful, at least in the near future.

Remyelination in MS

Anna Williams. MRC Centre for Regenerative Medicine, University of Edinburgh In multiple sclerosis, immune cells, which normally protect us from infection, attack the body's own cells instead - an autoimmune reaction. These immune cells cross from the blood to the brain and spinal cord and then damage the myelin sheath surrounding nerves. Myelin helps the nerves to conduct signals quickly and also protects them from damage, similar to the plastic insulation on electrical wires. Cells called oligodendrocytes make myelin which wraps around the nerves. When immune cells damage the oligodendrocytes, the myelin disintegrates - a process called demyelination. These areas can usually be seen on MRI scans as an MS plaque or lesion. This leaves the nerves poor at conducting electricity, causing MS relapses. The type of symptoms in the relapse depends on what part of the brain or spinal cord is demyelinated. Most MS relapses either get better or improve greatly when the immune reaction subsides and the demyelinated lesion repairs itself. This process of remyelination is carried out by a type of stem cell present in all of us called an oligodendrocyte precursor cell (OPC). In response to demyelination, OPCs multiply, migrate to the area of damage and then mature into an oligodendrocyte which makes a new myelin sheath to surround the nerves again - a process called remyelination. Remyelination happens frequently early in MS but gets less efficient with time. Eventually most MS lesions are not fully remyelinated. Remyelination not only restores the ability of the nerve to conduct electrical signals, but also helps to protect the nerve from damage. If nerves die back or degenerate, they cannot be replaced and this causes the accumulation of permanent disability in progressive MS.

Helping remyelination One approach to protect nerves from dying back is to promote their fast and efficient remyelination. There are now disease modifying drugs available that can be effective in reducing the number of relapses in people with MS, but there are none that slow, stop or reverse progressive disease or neurodegeneration. Finding such drugs is now a major research aim. In tissue from brains donated to the MS Tissue Bank, we find two sorts of MS lesions that have failed to remyelinate - those that do not contain enough OPCs (a failure of migration) and those that contain lots of OPCs but few mature oligodendrocytes (a failure of maturation). In experimental models, increasing both OPC migration and maturation improves remyelination and remyelination reduces neurodegeneration. Many research labs have tried to discover ways to improve remyelination in these models with the aim of being able to produce drugs that can do the same in humans. My research group has helped to discover two groups of molecules which help improve remyelination - the semaphorins which alter OPC migration to demyelinated lesions and RXRg which changes OPC maturation. There are now at least four other molecules which improve OPC maturation and remyelination in animal models, which have all been identified in the last five years. One of these molecules (antibodies against LINGO-1) is currently being tested in a very early trial in people with MS, and other trials will certainly follow. All of these aim to improve remyelination using our resident OPC stem cells.

Will stem cells help remyelination? We know that injecting OPCs directly into demyelinated lesions in animal models leads to remyelination. There is less enthusiasm about using stem cells injected directly into the brain as MS therapy. Most people with MS have many lesions which increase over time, which would require repeated injections on several occasions with risks

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We also know that infusing a different type of stem cell (mesenchymal stem cells) into some experimental models of MS causes the release of helpful repair molecules which suppress the immune reaction and improve recovery. Trials for mesenchymal stem cells in people with relapsing remitting MS are in progress, but it is unclear whether these will help remyelination, which is needed in people with progressive disease. My research group has set up an experimental model of remyelination that we can study in a culture dish, to rapidly screen many drugs and molecules to see whether they improve remyelination. We take slices of brain and grow them in a culture dish. We then demyelinate them with a toxin and study the rate of remyelination by adding different drugs or molecules to the slice. This has the added advantage of avoiding live animal use, and we recently won a 'highly commended' prize from the National Centre for Replacement, Refinement and Reduction of Animals in Research for this development. Importantly, it means that more research questions can be answered from fewer animals.

lesions, but it is difficult to be sure which are demyelinated and which remyelinated. We also cannot tell which of these lesions contain few and which contain many OPCs, so it would be unclear whether to use therapy to promote OPC migration or maturation. The best way currently to see whether a drug helps progressive MS is to measure the rate of worsening of disability, but this is often rather slow, occurring over several years, and testing lots of drugs in these long trials would be very expensive. So, we need to develop better models and better markers of remyelination in humans to speed up research into reducing MS progression. In the future, I envisage that a person with relapsing remitting MS will be treated first with existing disease modifying drugs to reduce the immune attack and relapses. To avoid progression of disease, he/she will also have drugs to improve the efficiency of remyelination and perhaps a third set of drugs to further protect nerves. These are not yet available, but we (and many others) are working on it.

Measuring remyelination One of the problems of moving these findings into humans is that we are different from other animals, which do not get MS. We use experimental models to try to produce a disease similar to MS, but unlike humans, rodents are extremely good at remyelination. Another problem is that it is very difficult to detect remyelination in living people. Currently, we can only be sure that areas of a lesion are remyelinated by studying tissue removed from the brain under a very high power microscope - an electron microscope. MRI scans can show MS picture: Fabian Mohr

More about MS research For more about research into all aspects of MS, visit the MS Trust's Research web pages. These include news about treatments in development for all types of MS, details of MS Trust funded studies and information about how to take part in trials. Visit www.mstrust.org.uk/research Also sign up for our weekly research update email www.mstrust.org.uk/research-updates

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from the surgery and an unknown risk from the cells themselves. Improvement of remyelination using our own resident stem cells is much more likely to be successful, at least in the near future.

Remyelination in MS

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Riding

This sporting life

Sailing Surprisingly, something I never enjoyed as a child was sailing, despite living near the sea. Six years ago I went to a local Sailability group that uses accessible, unsinkable dinghies which are designed for people with disabilities. Here I learnt how to sail and got the bug. I sail solo regularly on a lake with one group and also with another using larger boats in Poole harbour. Sailing on a warm, sunny day is a wonderful way of getting some fresh air and sunshine.

Tim Worner I was working as a manager in retail when, about ten years ago, I was diagnosed with primary progressive MS. I am 50 this year and have many of the common symptoms of MS including fatigue, mobility problems and balance. I walk short distances with the help of a pair of crutches and do use a mobility scooter. I 'retired' soon after my diagnosis and I have tried to keep busy and active since then. As a child I never really enjoyed competitive sports. I was bought up in a family where we walked the dogs out in the countryside and my father, who came from a farming background, taught me to ride horses and to shoot. As an adult, all my spare time went into motorbikes. Soon after I gave up work I also sold my last motorbike. Riding it was not too much of a problem but arriving at a destination and walking around was. Maybe after over 30 years without any major injury and a relatively clean licence, it was time to move on anyway.

Sportability I have tried many sports and activities since, some returning to my childhood days, some new. I found out about Sportability a few years ago. Sportability is a charity that offers people with paralysis and neurological conditions opportunities to try different activities and sports all free of charge. Activities include gliding, canoeing, clay pigeon shooting, archery, microlighting and much more. I went quad biking and this proved to be as much fun as riding a motorbike. I soon became the local area organiser and it has been great to see so many people come along and try things they might have never done before and to see them coming back for more. Even better is hearing that they have taken up a new sport as a hobby.

Sportability 020 8959 0089 / www.sportability.org.uk The Chief Executive of Sportability wrote about the charity in the May 2011 issue of Open Door - www.mstrust.org.uk/opendoor

RYA Sailability

Shooting One particular sport I wanted to try was shooting. Through Sportability we put on an event with Christchurch Gun Club and had a great afternoon with about 15 people shooting a variety of firearms. This helped me decide that shooting was for me. I joined the club, served my probationary period and got my firearms licence. I bought my first two guns with proceeds from my last motorbike. From there I have not looked back. I go to one of two clubs several times a week and have met many new friends. Socially it is very good - there is a lot of talking and putting the world to right every time. I also find the cleaning and maintenance very therapeutic and good for dexterity. Then there is the history. What else can you use on a regular basis that was designed in the nineteenth century and was decisive in winning the American Civil War or had won the West? I also own the same model rifle my Granddad would have carried on the Somme and Dad used during basic training in the RAF during World War II. I am a range officer at both clubs. This involves running the range for the morning and ensuring it is kept to a high standard of safety. Being able to deal with any malfunctions of members' guns and keeping an eye on new probationary members carries a lot of responsibility but great sense of being part of the club. Most types of shooting can be done standing or seated. Both clubs I belong to have been very welcoming as have other clubs that I have been to as a visitor. The National Small Bore Rifle Association (NSRA) is running Disabled Shooting Year to raise the profile of target shooting for people with a disability and to bring more people into the sport.

National Small-bore Rifle Association (NSRA) www.nsra.co.uk

www.mstrust.org.uk

0844 556 9550 / www.ryasailability.org.uk I also wanted to take up horse riding. I had great trouble finding stables that I was happy with and that had a suitable horse. Eventually I found Patrick, a retired hunter, who was stabled at a nearby private school. I will never forget my first ride on Patrick. My balance was poor and I was wobbling so much that I was thinking that riding might not be for me. We all persevered though, through many issues including painful leg cramps. We got to the stage where I could trot and was confident if Patrick spooked, which he often did as he did not like cars, cyclists and many other things. When we started going out on hacks through the school grounds, it was great leaving my crutches behind and have people see me as just another rider. I have now ridden many different horses at local stables and whenever we are on holiday I try to get a ride. Highlights include Dartmoor, on a beach in Devon and particularly a two hour ride up a mountain side in Wyoming on a horse called Molly along with a cowboy and his dog. Very difficult terrain and remote, so no chance of asking to get off and a car to fetch me. Riding has proved to be very good, giving me both a great sense of achievement and very good exercise as I am sure it has improved my balance and core stability. I would recommend it to anyone. Many other people with MS I know have taken it up through local RDA (Riding for the Disabled Association) groups after hearing about it from me.

Riding For The Disabled Association (RDA) 0845 658 1082 / info@rda.org.uk / www.rda.org.uk See page 4 for news of research into the benefits of horse riding

Rambling Then there is my Tramper, the mobility scooter designed to specifications of the Disabled Ramblers. It costs a bit more than a standard scooter but is well worth it for the ability to go anywhere - rough tracks, mud, sand, snow, water, up raised kerbs - and in any weather. I have owned mine for five years and this has meant I can take our dog, Charlie, out for walks in local countryside and get to and see things I would never be able to without. Often I have come back soaked from pouring rain and covered in mud, feeling completely exhilarated being out in the country. We have a small trailer so we can take it further for days out, going on holiday or visiting outdoor events such as steam shows, agricultural shows and festivals.

Disabled Ramblers disabledramblers.co.uk

All the sports and activities I do can be done on a reasonably tight budget and are done for the enjoyment and to challenge myself and my own ability. Want to find the right sport or pastime for you? The Staying Active pages on the MS Trust website cover a wide range of sports and activities - www.mstrust.org.uk/stayactive Also see back issues of Open Door for other articles on sports and activities www.mstrust.org.uk/opendoor

Freephone: 0800 032 3839

Riding

This sporting life

Sportability 020 8959 0089 / www.sportability.org.uk The Chief Executive of Sportability wrote about the charity in the May 2011 issue of Open Door - www.mstrust.org.uk/opendoor

RYA Sailability

National Small-bore Rifle Association (NSRA) www.nsra.co.uk

www.mstrust.org.uk

Riding For The Disabled Association (RDA) 0845 658 1082 / info@rda.org.uk / www.rda.org.uk See page 4 for news of research into the benefits of horse riding

Disabled Ramblers disabledramblers.co.uk

Freephone: 0800 032 3839

Airports and aeroplanes

Travelling and holidays

Travelling by air may mean that even if you are normally independent you will need help. For example, if you have walking difficulties you may find that you'll need to use an airport wheelchair or buggy to get to the departure gate. If you will need help, you should give the airline, travel agent or tour operator at least 48 hours notice before you travel.

Around this time of the year, the Information Team at the MS Trust receives lots of enquiries about all aspects of holidays and travelling.

Keeping your cool

Holidays and travelling can take you to warmer climates. Many people with MS find their symptoms Getting away from the daily routine and doing something get worse in the heat, so here are some simple tips: new can make a massive difference to your well-being. ■ Have regular cold drinks or suck an ice cube or For some people travelling with MS may simply mean frozen pineapple chunks. checking that any medications you might need on holiday have been packed, for others it may involve ■ Spray your face and wrists with a mister - this making sure that the facilities in an accessible hotel room can be cheaply refilled with tap water. There are adequately meet your requirements. also commercially available sprays, such as Magicool, that will stay cool throughout the day.

Travel insurance Most mainstream insurance companies have a sensible approach to MS and should provide a quote based on your own circumstances. It's worth shopping around to compare prices. Check the fine print of the policy to ensure that all your needs are covered. For example, mobility aids and disability equipment are unlikely to be covered by standard travel insurance policies. The MS Trust works with Unique to provide a range of insurance products, specifically tailored to meet the needs of people with MS and their families. Unique will donate to the MS Trust for every policy sold.

Unique Contact 01603 828 387, quoting 'Newsletter', or visit www.mstrust.org.uk/insurance

If you are visiting a country in the EU, the free European Health Insurance Card (EHIC) lets you get state healthcare at a reduced cost or sometimes for free. Each country's health system is different and might not include all the things you would expect to get free of charge from the NHS. Keep all receipts and any paperwork (make copies if necessary) as they might be needed when appling for any reimbursement.

0845 606 2030 / www.ehic.org.uk

■ Carry a battery-operated hand-held fan. ■ A wide variety of relatively inexpensive cooling scarves, ties and wrist bands can be worn. These contain a gel or other substance that can be pre-cooled before wearing. Depending on the product, the cooling effect can last from a few hours to several days.

Some suppliers Personal Cooling Centre - 0870 011 7174 / www.personalcooling.co.uk Soo Cool - 01535 274 588 / www.soo-cool.co.uk

Travel vaccinations

EHIC

EHIC application service

■ Some people find eating makes them warmer, and so it may be an idea to choose salads and sip iced water while eating. A cooling dessert can help.

Most people with MS can have all the vaccinations that are required when travelling abroad. It's preferable to be protected than run the risk of contracting the diseases, many of which are serious and life threatening.

Airlines should let you carry up to two items of mobility equipment free of charge. You must tell the airline when you book your flight so that they have the details of your wheelchair or scooter. You can't take your own wheelchair into the passenger cabin of a plane. It will be stored in the hold. Larger aircraft may have on-board wheelchairs which are narrow enough to pass along the aisles. Comprehensive information and advice is available from DPTAC (Disabled Persons Transport Advisory Committee).

Accessible travel Information for disabled and less mobile people http://tinyurl.com/dptac-accessible Access to air travel http://tinyurl.com/dptac-air

Taking medications abroad If you are taking one of the injectable disease modifying treatments, you will need a letter from your MS nurse or from the home delivery company. If flying, the injectable medication must be carried in your hand luggage as there is a risk it may freeze if carried in the hold. Your drug delivery company can provide a travel pack to keep medications cool during your journey. If the medication needs to be stored in a fridge or you are going somewhere where the room temperature is likely to be above 25°C you will need to liaise with the travel company before you leave to ensure access to a fridge. If you are concerned about any aspect of travelling with an injectable medication you should contact your MS nurse or drug specific support line.

If you're unwell, for example in the middle of a bad relapse, you may be advised to delay vaccination.

Prescription medications can be carried in your hand luggage. Take a copy of your most recent prescription with you in case you are taken ill or in case you lose any of your medications whilst away. If you have any concerns contact your MS nurse.

If you're taking a drug which suppresses the immune system, you should not receive 'live' vaccines as you may be at greater risk for developing the disease.

Sativex, a cannabis-based medicine, is a controlled drug and its legal status varies between countries see our factsheet for information about travelling abroad with Sativex.

Make sure that your doctor is aware of all the medications you are taking.

Order the Sativex factsheet from the back page

www.mstrust.org.uk

Accessible accommodation and places to visit Many hotels in the UK now have accessible rooms, but standards vary. If you have additional needs or specific requirements, check that these can be met before you make a reservation. ■ OpenBritain - National Accessible Scheme (NAS) assessed accommodation in England www.openbritain.net ■ Disabledgo - very detailed information about accessible accommodation and venues www.disabledgo.com ■ Ceiling Hoist Users Club - accommodation with ceiling hoists - 01604 805839 / www.chuc.org.uk ■ Rough Guide to Accessible Britain - over 200 ideas for days out with hints and tips on some of the UK's best attractions www.accessibleguide.co.uk ■ Holidays Guide 2012 - includes resources, places to stay and things to do throughout the British Isles. Can be bought from the Disability Rights UK website - 020 7250 3222 / www.radar-shop.org.uk ■ Direct Enquiries Nationwide Access Register detailed information about accessible locations across the UK, including hotels, restaurants and tourist attractions - 01344 36 0101 / www.directenquiries.com

Hiring equipment on holiday You can hire equipment such as mobile hoists or wheelchairs from national and local organisations. Hiring from local organisations may save delivery costs.

National organisations include: ■ Independent Living www.independentliving.co.uk/rental.html ■ National Mobility Rentals - 0800 111 6232 / www.nationalmobilityrental.com ■ Direct Mobility - 0800 092 9322 / www.directmobility.co.uk ■ Local Red Cross branch - 0844 412 2804 / www.redcross.org.uk/Where-we-work/In-the-UK ■ Some Shopmobility schemes are able to hire out wheelchairs for extended periods - 0844 414 1850 / www.shopmobilityuk.org You may also be able to hire equipment when holidaying overseas. A travel agent or tour operator should be able to help you with this.

Freephone: 0800 032 3839

Airports and aeroplanes

Travelling and holidays

Around this time of the year, the Information Team at the MS Trust receives lots of enquiries about all aspects of holidays and travelling.

Keeping your cool

Unique Contact 01603 828 387, quoting 'Newsletter', or visit www.mstrust.org.uk/insurance

0845 606 2030 / www.ehic.org.uk

Some suppliers Personal Cooling Centre - 0870 011 7174 / www.personalcooling.co.uk Soo Cool - 01535 274 588 / www.soo-cool.co.uk

Travel vaccinations

EHIC

EHIC application service

■ Some people find eating makes them warmer, and so it may be an idea to choose salads and sip iced water while eating. A cooling dessert can help.

Accessible travel Information for disabled and less mobile people http://tinyurl.com/dptac-accessible Access to air travel http://tinyurl.com/dptac-air

If you're unwell, for example in the middle of a bad relapse, you may be advised to delay vaccination.

If you're taking a drug which suppresses the immune system, you should not receive 'live' vaccines as you may be at greater risk for developing the disease.

Sativex, a cannabis-based medicine, is a controlled drug and its legal status varies between countries see our factsheet for information about travelling abroad with Sativex.

Make sure that your doctor is aware of all the medications you are taking.

Order the Sativex factsheet from the back page

www.mstrust.org.uk

Hiring equipment on holiday You can hire equipment such as mobile hoists or wheelchairs from national and local organisations. Hiring from local organisations may save delivery costs.

Freephone: 0800 032 3839

Supporting the MS Trust

Volunteers needed this Christmas Last year the MS Trust sold more than 31,200 packs of Christmas cards - this means that well over 300,000 people will have received our cards, helping to raise awareness of MS. This year, we would like to sell even more, but we need your help to do it.

Many of our supporters choose to fundraise and make donations in memory of a loved one, to help others living with MS now. Elisa Halley and her family recently held a big fundraising event in loving memory of her brother Paul. She tells us below why they chose to remember him in this way.

for raffle prizes. A magician came to keep the children happy, as well as a face painter and a mini disco team. We played heads and tails and tucked into bacon buns, sausage buns and home-made chunky chips!

We urgently require volunteers in specific areas, so if you think you can help, please contact Claire on 01462 476707.

Pauly P Day Paul was only 19 when he was diagnosed with MS. He was such a happy boy who could only see the positive outcome in everything. He was doing so well in life, working at Newcastle Airport, had his own car and all the ladies loved him! He enjoyed playing golf and football.

The Santa Run is the perfect event for all families: open to runners of all ages from eight upwards and with a 5K or 10K course which is suitable for wheelchair users. All entrants get a free Santa suit so you can join around 2,000 others in Greenwich Park on 9 December 2012 and be Santa for a day.

Paul never saw MS as an illness - he just seemed to get on with it even though it stopped him doing what he enjoyed the most in life.

We found a lot of useful advice and practical tips from the Open Door magazine, often reading that others were going through the same as us. Sadly Paul died on 15 May 2002, only four years after being diagnosed. This year was his 10th anniversary so when we read that the MS Trust was holding a 'Be Bold in Blue' week, we knew we had to get involved. We decided to hold a family fun day at a local pub. We sent invitations out and could never have imagined the response we got back - within four weeks we had sold 250 tickets. All of Paul's friends and family thought it was such a fantastic idea to celebrate his life and raise lots of money. We asked friends for unwanted gifts and these made fabulous tombola prizes. A local company let us contact all their customers and suppliers asking

We are looking for supporters to take part in a new cycle challenge in 2013, the 3 Cities cycle ride. Plus we're now booking for a Great Wall of China trek next autumn. Sign up now to give yourself plenty of time to fundraise. 3 Cities (London-Amsterdam-Brussels): 29 May - 2 June 2013 £99 registration fee + £1,500 minimum sponsorship China Trek: 5 - 14 September 2013 £349 registration fee + £3,200 minimum sponsorship For further information on all our overseas events visit www.mstrust.org.uk/overseas. You can also help us by displaying the enclosed posters somewhere prominent.

Join in the fun of the Santa Run!

We are such a close family, so when he was diagnosed we were totally devastated.

He would still go to the pub every week with his friends. We used to worry so much as he was in a wheelchair and couldn't even hold a drink! His friends were great, though always sending him home drunk! Others would come and take him shopping or just back to their houses.

You can get involved by volunteering at your local Cards for Good Causes Christmas Shop; selling MS Trust Christmas cards at your office, a Christmas fair or coffee morning; or simply by handing out our Christmas card brochure to your friends and family. Christmas cards help to raise a significant proportion of the funds we need each year to keep our enquiry service running, so if you can spare some time, please do.

Overseas events for 2013

For more information visit: www.mstrust.org.uk/santarun

Skiers and snowboarders, join us for a ski experience like no other! Our next Monster Ski challenge will take place in Tignes in March 2013. Please contact us or visit www.mstrust.org.uk/monsterski for more information.

The whole day was a complete success raising £4,200 for the MS Trust. We never thought we would be touched by MS but it's now a massive part of our lives. Even though Paul is not here we will do our best to make sure his name and smile shines on.

Helping others with MS Elisa and her family found that the information they received from the MS Trust when Paul was diagnosed was a big help for them all in coming to terms with MS. They wanted to fundraise so that others could have the same support. The money raised through Pauly P Day is enough to send a copy of Open Door to over 3,300 people, providing vital information to other families affected by MS. We would like to say a big thank you to them for their hard work and for the money they have raised.

www.mstrust.org.uk

Monster Ski 2013

Your lasting legacy The MS Trust believes that everyone living with MS should have access to trusted information and to specialist MS services that provide the highest standard of care. You can help us to secure this for future generations. 17-23 September is Remember a Charity Week. If you are interested in learning more about leaving a gift in your will to the MS Trust, contact us on 01462 476707 or download an information pack from www.mstrust.org.uk/legacy Together we can make a difference for people living with MS, now and in the future.

Our work could not continue without the dedication and support of our fundraisers, donors and volunteers. If you would like to get involved with any of our activities, please contact us on 01462 476707 or email fundraising@mstrust.org.uk

Freephone: 0800 032 3839

Supporting the MS Trust

We urgently require volunteers in specific areas, so if you think you can help, please contact Claire on 01462 476707.

Paul never saw MS as an illness - he just seemed to get on with it even though it stopped him doing what he enjoyed the most in life.

Join in the fun of the Santa Run!

We are such a close family, so when he was diagnosed we were totally devastated.

Overseas events for 2013

For more information visit: www.mstrust.org.uk/santarun

www.mstrust.org.uk

Monster Ski 2013

Freephone: 0800 032 3839

New from the MS Trust

Order form For a full list of publications visit www.mstrust.org.uk/pubs

DVDs Move it for MS – a DVD of exercises for people with MS (£1) Also visit the Exercises for people with MS pages at www.mstrust.org.uk/exercises

Factsheets Regularly updated, we now have more than 20 titles available including Bladder problems Bowel problems Cognition Pain Sativex Vitamin D

Disease modifying drug therapy new edition

Chatroom transcript Secondary progressive MS - managing the transition

Publication leaflet The full list of titles available from the MS Trust All items are free unless stated, but if you would like to make a donation towards our costs, we would be very grateful

Date / /

Name Job title (if health professional) Address

Postcode Telephone number A copy of the MS Trust’s data protection policy is available on request Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET

Welcome to the summer edition of Open Door

Neuropathic pain

Sport and activity

Travel and holidays

Inside this issue...

August 2012

www.mstrust.org.uk

Pam Macfarlane Chief Executive

Also inside:

www.mstrust.org.uk

Freephone: 0800 032 3839

Value of MS nurses

News

Research update

Remyelination in MS

Supporting the MS Trust

New from the MS Trust