Quarterly newsletter of the MS Trust
Open Door August 2014
ACCESS ALL AREAS Stories, tips and resources to help you get to the events and activities you love this summer
Also in this issue MS Trust survey reveals shortfall of MS nurses
Are you reporting all your relapses?
Can mindfulness improve your mood?
Having a baby when you have MS
Thanks to you, Bill knows he can rely on Diane whenever he has a question about his MS. It’s only thanks to the support of people like you that the MS Trust is able to train and develop Diane and every other MS specialist nurse in the UK. Over their careers, these nurses will help thousands of people with MS make the choices that help them live life to the full. But not everyone has access to someone like Diane. Many people with MS in the UK still don’t have a local MS specialist nurse. And many MS nurses are finding their posts threatened by budget cuts. That’s why we’re leading the fight to help them help people with MS. There are many ways you can help. Leaving a gift in your will is one. To find out more visit mstrust.org.uk/legacy or call 01462 476707
Together we can make sure that no one has to deal with MS alone.
Welcome to the summer issue of Open Door 2014 seems to be rushing by! We’re already over halfway through the year, so it seems like a good time to take stock of what we’ve achieved and look ahead at some of our plans for the rest of the year. It seems like only yesterday it was MS Awareness Week. I’d like to thank all of you for your amazing efforts in this year’s events. You helped us reach more people than ever before with vital MS information and raised over £20,000 in our Bold In Blue fundraising campaign. That’s enough to answer the questions of 2,000 people on our freephone enquiry line! Despite the fact it’s August we’re already looking ahead to Christmas. Included with this issue of Open Door you should find our 2014 Christmas card catalogue. We have a great new selection of cards for you to choose from, all at very reasonable prices. The MS Trust was founded on the sales of Christmas cards and they still play a very important part in funding our work. Every card you buy makes a difference to someone living with MS and raises awareness about our work. Thank you for your continued support. When the Trust was founded we set ourself a simple but huge job: to help people with MS continue living life to the full. In this issue we hear from people with MS about how they’ve found ways of going to festivals, football games and bars and restaurants. We still have a long way to go before we have a fully accessible society, so we’d love to hear your experiences, good or bad, of going out and about when you have MS. Send an email to opendoor@mstrust.org.uk or give us a call on 01462 476700. Best wishes
Contents 4 News
News on how we’re working to improve NICE’s clinical guideline for MS and safeguard the future of MS nurses, plus our new books on progressive MS
8 Research update New research on balance problems, MS drugs and pregnancy, and why it’s important to report relapses
12 Cover story: Access all areas! People with MS tell us how with the right planning and preparation you can access the events and activities you love
16 Two in a million Graham and Nicki Law explain how mindfulness has helped them deal with their MS
*18 Having a baby Janice from our info team looks at what you might need to think about if you have MS and you’re having a baby
20 Get involved! Introducing our new Friends of the MS Trust fundraising groups 21 Your chance to volunteer at a Cards For Good Causes shop plus all our latest fundraising opportunities
22 15 minutes with Amelia Southard The blogger and member of our Continence Question Time panel answers a few of our questions
Pam Macfarlane Chief Executive, MS Trust 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
Articles marked with an asterisk have been produced in accordance with the Information Standard.
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 August 2014
Freephone 0800 032 3839 www.mstrust.org.uk info@mstrust.org.uk
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Affected by any of these news stories? Call our info team: 01462 476700
News
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
A backward step for MS services? In April NICE published a draft of its new clinical guideline on the management of MS. This is a new edition of the guideline first published in 2003 which makes recommendations for the full range of care that should be available from the NHS for people with MS in England, Wales and Northern Ireland. We’re concerned that the new draft is a real backward step. What’s been lost is the vision of a baseline ‘seamless, person-centred service’ that people with MS should expect. Unless it is revised, we believe the guideline will set back the availability and quality of care people with MS receive. We are very concerned about some of the recommendations in the draft and believe there are significant omissions. We’re concerned about how usable the document will be for many health professionals, particularly those who may not specialise in MS. We are also concerned that it may send a negative message to those who commission MS services, giving them the impression that they can reduce service levels. We also feel that too much of the guideline development process happened behind closed doors and so fails to meet the real needs of the MS community. We took the unprecedented step of writing jointly with the MS Society to ministers and senior officials at NICE, seeking to halt the guideline development process and to improve its content and usefulness. As it stands, we believe the guideline will set back the availability and quality of care for people with MS. The Guideline Development Group is now considering the responses to the draft and NICE are putting together their response to our specific concerns. We expect the final guideline to be published in October, and we will be putting pressure on NICE to change the draft in the meantime.
Our key concerns 1. Many therapies have been undervalued or left out of the guideline because NICE doesn’t rate the evidence that is available. This includes many treatments for ataxia and tremor, for example, where it’s impossible to give a dummy treatment for comparison. 2. Rehabilitation in general, and specifically neuro-rehabilitation, has been entirely omitted. Rehab is an essential element of an MS service. Its absence from the draft sends the wrong message to managers and commissioners of MS services. 3. Sativex (nabiximols) and Fampyra (fampridine) were not recommended. Sativex is an add-on treatment for spasticity and Fampyra can help people with walking where their mobility is starting to decrease. We believe these treatments should be available to people with MS who might benefit. 4. There is no recognition of the importance of specialist health professionals apart from neurologists. The draft implies a very hospital-based model of care. It neglects community-based services, barely mentions continence services, physiotherapy and occupational therapy services, and mentions speech and language therapists only once. 5. The scope of the guideline deliberately omits symptoms and treatments covered by other NICE guidance and technology appraisals. As it stands, any non-specialist health professional or an NHS manager arranging overall services will need to crossreference many other NICE documents to build a comprehensive picture of how to manage MS. Our concern is that they will not have time to do this, resulting in a risk of much poorer overall Find out more care for people with MS. about our work
campaigning for better MS services mstrust.org.uk/ action-for-ms 4
Open Door August 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
For more on all symptoms, drugs and treatments see our A-Z of MS: mstrust.org.uk/atoz
News
Drugs for relapsing remitting MS Throughout 2014 the MS Trust has been actively involved in appraisals for new treatments for relapsing remitting MS. Here is a brief summary of the latest developments. Alemtuzmab (Lemtrada) In May NICE issued final guidance for the prescribing of alemtuzumab by the NHS in England and Wales. This confirms the provisional approval that was issued in April. In July the Scottish Medicines Consortium (SMC), approved use of alemtuzumab by the NHS in Scotland. It should start to be prescribed on the NHS from late August. Alemtuzumab is approved as a treatment for adults with active relapsing remitting multiple sclerosis (two clinically significant relapses in the previous two years). Treatment consists of an intravenous infusions on five consecutive days, followed 12 months later by infusions on three consecutive days. Most people don’t require further courses of treatment. Side effects include thyroid disorders and a disorder that prevents blood from clotting. Monthly blood and urine tests are needed to monitor for these for 48 months after the last infusion.
Dimethyl fumarate (Tecfidera) NICE has also approved dimethyl fumarate, a tablet taken twice a day, as a treatment for relapsing
remitting MS, reversing its provisional decision against the drug issued in April. Dimethyl fumarate had previously been approved by the SMC for use in Scotland.
Fingolimod (Gilenya) NHS England has approved the extension of the licence for fingolimod to allow greater access to the drug for people with highly active relapsing remitting multiple sclerosis. The extended licence allows people to switch to fingolimod if they continue to experience relapses despite treatment with any of the other disease modifying drugs apart from alemtuzumab. Previously people could only switch if they continued to experience relapses after treatment with one of the interferon beta drugs. Before fingolimod can become more widely available in the UK, a similar decision will need to be taken in Wales, Scotland and Northern Ireland.
Peginterferon beta 1a (Plegridy) The Committee for Medicinal Products for Human Use (CHMP), which advises the European Medicines Agency, has recommended that pegylated
Open Door August 2014
interferon beta 1a (Plegridy) should be granted a licence for treating relapsing remitting MS. Plegridy is a new drug, formed by adding polyethylene glycol to interferon beta 1a (Avonex) to make the drug remain longer in the body. As a result, it is injected once every two weeks rather than once every week.
Laquinimod (Nerventra) In May CHMP confirmed its decision not to recommend laquinimod for a license to treat relapsing remitting MS. In clinical trials people taking laquinimod had about 25 per cent fewer relapses than those taking placebo. As this is lower than the existing drugs, CHMP felt the benefits of laquinimod didn’t outweigh the risks of side effects. A trial looking at the effect of laquinimod on disability progression in relapsing remitting MS is currently underway and is expected to be complete in 2018. A trial to investigate the potential of laquinimod in progressive forms of MS is also being Read more planned.
about all these drugs at mstrust.org.uk/atoz or order factsheets on p23.
Freephone 0800 032 3839 www.mstrust.org.uk info@mstrust.org.uk
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News S A F E G UA R D I N G MS SER VIC ES
MS Trust survey reveals shortfall of UK MS specialist nurses Research suggests another 126 MS specialist nurses needed in the UK In March and April this year we carried out a survey of every MS nurse in the UK. The response was amazing – over 97 per cent of nurses responded. But the results were disappointing. We found that we don’t have nearly enough MS nurses to care for the more than 100,000 people in the UK living with MS. We found that there are 245 MS specialist nurses in the UK and on average they support 550 people with MS. The recommended caseload is closer to 300. We estimate that we need at least 126 more MS specialist nurses to provide an acceptable service to people with MS. Over the last 21 years we have campaigned for and supported the growth of MS specialist nursing. However, we are concerned that ongoing changes in the NHS could leave MS specialist services under threat. We hope this report is a timely reminder to NHS managers that we need more not fewer MS nurses. In the upcoming months we will look more closely at the challenges facing UK MS specialist nursing. We will also analyse the regional variations in more detail so we can identify the areas where we don’t have enough MS nurses.
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MS nurses in 2014: key facts
There are over 100,000 people living with MS in the UK
but only 245 MS specialist nurses
The recommended caseload for an MS specialist nurse is 300 people with MS
Our survey found there are on average 550 people with MS for every MS specialist nurse in the UK
Read the full report online at mstrust.org.uk/nurse-survey-2014
We estimate that we need at least another 126 MS specialist nurses to provide an adequate service for people with MS
Open Door August 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
Find out more about our work campaigning for better MS services mstrust.org.uk/ action-for-ms
News from the MS Trust How was your MS diagnosis?
M S T R E AT M EN T S
Home delivery service failing to deliver Thousands find essential treatments delayed Thousands of people with MS have been affected by problems with Healthcare at Home, a service contracted by the NHS and pharmaceutical companies to deliver specialist medicines and medical devices to people with a range of conditions. Many people reported that drugs had not been delivered when promised and there were customer service issues when trying to find out what was happening. Healthcare at Home have been working to fix problems but if you have concerns about the delivery of your MS medication, ring 0800 055 6937 or 0333 103 9874 (Monday to Friday 8:00am– 8:00pm, Saturday, Sunday and bank holidays 8:00am –4.30pm). Be aware that they are currently receiving a large number of calls and it
may take some time for your call to be answered. If you have a complaint, email hahenquiries@hah.co.uk with the wording ‘Official Complaint’ in the subject heading. Healthcare at Home aim to respond fully to complaints within 40 days. If you have been unable to resolve any formal complaint through normal Healthcare at Home channels and you want to take your complaint further, please contact the Parliamentary and Health Service Ombudsman on 0345 015 4033. For latest updates on the service disruption visit the patient support website at hahsupport.co.uk
To help launch an exciting new MS Trust project we’re looking for people to tell us how their diagnosis went and how it could have been improved. Who gave you your diagnosis? Did they give you any information? Would you have liked more? What would have put your mind at ease? What advice would you give to people who are being diagnosed now? If you’d like to get involved then please take our short online survey at mstrust.org.uk/survey Your input will help us make a difference for even more people affected by MS!
Congratulations to our MS Super Teams! MS specialists from Milton Keynes and Wiltshire win our 2014 awards During MS Awareness Week this year we asked you to nominate the MS health professionals who have gone the extra mile for you. We heard back from hundreds of you, nominating MS specialist nurses, occupational therapists, physios, neurologists and whole MS teams. Every nomination came with a touching insight into the difference that MS specialists can make for people living with MS. We’re delighted to
announce that this year we have two MS Super Teams. Denise Middleton and Lesley Catterall, are MS specialists based in Milton Keynes, working for Central and North West London NHS Foundation Trust. “We’re overwhelmed to be nominated,” said Lesley on being told of her win. “We love supporting patients with MS and feel very lucky to have such rewarding and fulfilling job.” Wessex MS Therapy Centre in Warminster,
Open Door August 2014
Wiltshire, is an independent charity and provides therapies, information and practical and emotional support for people with multiple sclerosis, their carers and families. Centre Manager Rosie Eliot said “On behalf of all the staff, therapists, and volunteers at the Wessex MS Therapy Centre, I want to say a very big thank you to the MS Trust for making us feel so special, and to our members for nominating us. Our centre is a special
place and we believe our work contributes to ‘positive living with MS’”. Thank you to everybody who took part in this year’s campaign.
To read more about our work supporting MS specialists visit mstrust.org.uk/ nurses
Freephone 0800 032 3839 www.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
economic corner MS REHAB
Can rehab help with MS balance problems? Balance problems are a common symptom of MS. However we don’t yet know if the senses can be retrained or improved once problems appear. This study examined balance rehabilitation to see if it could improve stability in people with MS. Authors Cattaneo D, et al Title Stabilometric assessment of context dependent balance recovery in persons with multiple sclerosis: a randomized controlled study Journal Journal of NeuroEngineering and Rehabilitation 2014;11(1):100 >> Read the full study (PDF file): tinyurl.com/msbalance
How was the study carried out? 53 people with MS took part in the study. An initial assessment of their balance was carried out and they were divided into two groups. One group received balance rehabilitation to improve motor (movement) and sensory (information from the senses) techniques for maintaining balance. As well as basic movement exercises, in this group each person was also given exercises that were tailored to their own sensory impairments. For example, they did some exercises with their eyes shut to improve the other senses. Exercises were also done on a foam surface to make them more challenging. The other group only received the basic rehabilitation programme of movement exercises. All participants received 15 treatment sessions, each lasting 45 minutes over a period of three weeks. After the three weeks,
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another balance assessment was carried out.
What were the results? The researchers found that there were significant improvements in stability and balance for those who had received the balance rehabilitation programme. In four out of the six assessment tests, including standing with their eyes shut and standing on an uneven surface, they were more stable than the group who had basic rehabilitation. Members of this group who were initially unsteady and falling were also more steady and balanced.
What does this mean for people with MS? The researchers suggest that after tailored rehabilitation people with MS can recover from sensory impairments and improve their balance. However, further work would be needed to assess if the rehabilitation programme works in the longer term.
How can you get help with balance problems? MS balance problems can be made worse by a number of other MS symptoms, including pain, weakness, numbness, muscle stiffness, spasms, visual problems and fatigue. So if you have a balance problem, you should speak to a physiotherapist who can give you a full assessement. Speak to your MS nurse To find out more or GP to find out about how MS can about finding a affect your balance see physiotherapist mstrust.org.uk/ near you. balance
Open Door August 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
Research update M S IN T H E FA MI LY
Do you need to stop taking MS drugs if you’re planning on becoming a dad? We still know very little about the effect of MS drugs on pregnancy and babies. These studies looked at what happens if a father is taking an MS drug when his baby is conceived. Authors Pecori C, et al Title Paternal therapy with disease modifying drugs in multiple sclerosis and pregnancy outcomes: a prospective observational multicentric study Journal BMC Neurology 2014;14:114 >> Read the full study: tinyurl.com/father-DMT-1 Authors Lu E, et al Title Birth outcomes in newborns fathered by men with multiple sclerosis exposed to disease-modifying drugs Journal CNS Drugs 2014;28(5):475-482 >> Read the abstract: tinyurl.com/father-DMT-2
How were the studies carried out? In both of these studies the researchers looked at pregnancies where the father had MS and was taking either a beta interferon drug or glatiramer acetate. They compared them to pregnancies where the father had MS but was not taking a disease modifying treatment (DMT). In the first study researchers gathered data on 78 pregnancies in Italy and assessed the children for up to two years after birth. The second study studied 195 pregnancies in Canada.
What were the results In the Italian study there were 45 pregnancies where the father was a man taking a DMT. The researchers found that there were no differences in the risk of miscarriage, complications, the length of pregnancy, the number of caesarean deliveries, birth weight and birth length when compared to babies fathered by a man not taking a DMT. The follow-up study of the children
also found they were developing normally in the first couple of years of their lives. In the Canadian study there were 53 pregnancies where the father was taking a DMT. The researchers found that there were no differences in average birth weight or length of preganancy between babies whose father was taking a DMT and those where the fathers did not.
What does this mean for people with MS? The evidence for both studies shows that beta interferons and glatiramer acetate do not increase the risk of miscarriage, complications or birth defects. However, the number of pregnancies and babies examined in both studies was relatively small, so the researchers recommend that vigilance must be maintained and further studies are needed, including looking at the effects of DMTs other than beta interferon or glatiramer acetate.
Open Door August 2014
What are the risks of taking other MS drugs? This small study adds to our knowledge about beta interferon and glatimer acetate but there is still very little information about how other MS drugs taken by fathers might affect pregnancy. Aubagio (teriflunomide) is detected in semen so you are advised to stop taking it if you’re thinking of starting a family. If you’re taking any MS disease modifying or To read more about symptom having a baby when you treating drugs have MS visit and thinking mstrust.org.uk/pregnancy of trying for a or order our pregnancy baby it’s a good factsheet on p23 idea to talk to your MS nurse or neurologist first.
Freephone 0800 032 3839 www.mstrust.org.uk info@mstrust.org.uk
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Research update MS RELAPSES
Do people with MS report all their relapses? This study looked at how often people reported their relapses and what effect their relapses had on their health, work and relationships.
Authors Duddy M, et al Title The UK patient experience of relapse in multiple sclerosis treated with first disease modifying therapies Journal Multiple Sclerosis and Related Disorders, 2014; 3 (4): 450-456 >> Read the full study: tinyurl.com/ms-relapse
How was the study carried out? The researchers surveyed people in the UK with relapsing remitting MS (RRMS) who had started a disease modifying treatment (DMT) more than 36 months before screening. They also collected data on MS relapses and treatments over three years from medical records.
What were the results? 103 people with RRMS completed questionnaires. The researchers found that they under-reported their relapses to health care professionals, with 28 per cent of respondents failing to report their most recent attack and 46 per cent declaring they had failed to report an attack in the past. During their most recent relapse, 67 per cent of those in paid employment reported taking time off sick, 48 per cent reduced their working hours temporarily, and 41 per cent worked reduced hours and took time off sick.
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66 per cent required additional support to undertake routine daily tasks during their most recent relapse. A range of effects of relapse which cannot be measured in financial terms were also reported, including effects on physical abilities, mental health and family roles and relationships.
What does this mean for people with MS? This study provides an insight into the experience of relapse early in the treatment of RRMS. The comparison of surveys with documented reported relapses reveals some deficiencies in the recording of relapses. The researchers conclude that the reporting and documentation of relapses needs to improve if relapse reduction is to remain a key goal of MS treatment.
Why is it important to report relapses? As the study suggests, not reporting relapses can have serious consequences on your physical and mental health, on your work and on your family and relationships. “Even minor relapses have an impact on your physical and psychological well being,” says Dr Martin Duddy, who lead the research. “We need to have a clear picture of whether or not people are having relapses, as they have an important role in assessing whether they need treatment and whether that treatment is working.” Professor Gavin Giovanonni, Head of Academic Neurosciences at Barts in London, agrees. “Many people with MS have symptoms such as tingling in the arms and legs but don’t think of them as being ‘serious’ relapses. But if they don’t report them, their health professionals can’t document them, and this might mean that they don’t get access to the treatments that might improve their long-term health.”
Open Door August 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
Research update Which symptoms might be a sign of relapse?
What is a relapse? People call relapses by different names. Some people might call it an attack, a flare up, an episode or exacerbation. In MS a relapse is defined as a sudden episode of symptoms or disability. To be classed as a relapse it must last at least 24 hours, but they often continue for weeks or months. To be considered a new relapse, it must occur at least 30 days after the start of a previous episode and not be caused by infection or other cause. Common relapse symptoms are visual problems, numbness and tingling and difficulty walking. Some relapses are relatively mild while others may cause more serious problems.
How do you know if you’re having a relapse? Many people with MS find that their symptoms fluctuate all the time and they can find it confusing to know when they are experiencing a relapse. The severity of MS symptoms changes over time. They can be made worse by stress, heat or tiredness. They can also be made worse if you have an infection – for example if you have a cold or a bladder infection. Usually your symptoms will settle down again once you have recovered. If your symptoms don’t settle down you may be having a relapse.
What should you do if you thinking you’re having a relapse? If you think you’re having a relapse it’s important to contact your MS nurse, if you have one, or your GP. If you contact your GP,
Whole body Fatigue Co-ordination Dizziness/balance issues Muscle tightness or stiffness Numbness/tingling Pain Burning Itching
Specific areas Memory/thinking problems Vision changes Speech changes Chewing/swallowing problems
Hand/arm weakness
Bowel or bladder problems
Difficulty walking
Leg/foot weakness
make sure that they properly document the relapse. If necessary, ask them to write a letter to your neurologist. They can: • give you steroid treatment which can speed up your recovery from the relapse (if your GP isn’t familiar with MS make sure they understand that relapses are treated with a relatively high dose of steroids) • refer you to a relapse clinic • give you treatment for any underlying infection Not all relapses need treatment. The symptoms of a relapse will generally improve on their own, although how long that will take and the full extent of recovery is unpredictable. Relapses are a sign of active disease so it’s important to get the right help as early as possible. This may help to reduce any long-term effects. Your MS team is there to help. They would rather you called, even if it turns out that you’re not having a relapse, than hear you have struggled on your own.
Open Door August 2014
How can you keep track of your MS symptoms? Keeping a diary to monitor your MS can be helpful. You might record • the date the relapse started • how you felt immediately before the relapse • when things started to improve • the symptoms you experienced • what helped . There are now a number of smartphone apps designed to help you monitor your MS. We’d be interested to hear if and how you have found any of them useful. Send an email to opendoor@mstrust.org.uk or give us a call on 01462 476700
To find out more about how managing your MS see mstrust.org.uk/ msandme
Freephone 0800 032 3839 www.mstrust.org.uk info@mstrust.org.uk
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CO V E R ST ORY
Access all areas! Summer is the season for getting out of the house but sometimes MS can get in the way. In this special feature, people with MS tell us how they find ways to go to the events and activities they love. We’re also highlighting organisations that can help you make sure that venues and events are as accessible as possible so that nobody has to miss out. We’d love to hear your experiences: send an email to opendoor@mstrust.org.uk or call us on 01462 476700!
“MS or not, I do Glastonbury much better now than I did back in 1993” Tim Sorrell on going to Glastonbury As I write I’m preparing for Glastonbury 2014. This will be my twelfth time at the most famous music festival in the world. As a 19-year-old student in 1993, bumbling along to something I’d barely heard of with a ticket I’d bought the week before, I had no idea what I was getting myself into. There are literally hundreds of stages and thousands of acts: as well as the main stages showing music, there’s a circus, a theatre, poetry, cabaret, comedy... everything. It was exhausting and exhilarating. I was hooked. By 2002, I was attending the festival every year, watching bands like Coldplay, R.E.M., Radiohead, Muse and Paul McCartney, but above all just enjoying the place itself. It’s magical. Then, in 2005, my world changed forever when I woke up one summer morning with a numbness in my right hand that spread slowly around my body: it was the first, insidious symptom of multiple sclerosis. Life went on, and I can track the four years before my eventual diagnosis through the bands I saw at the festival that I continued to attend: the White Stripes, the Killers, the Arctic Monkeys. By the time I watched Neil Young, Bruce Springsteen and Blur play at the 2009 Festival,
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I had a diagnosis and begun weekly injections of Avonex. Tim is a 40-yearGlastonbury is huge, old obsessive exhausting and sometimes runner, blogger and music overwhelming; simply walking fan who also around takes enormous amounts manages to fit of energy, especially when it’s in a full-time job four years in muddy. I need to watch my footing After t. ultan cons IT an as y diagnosed tuall even limboland, he was in the crowds and I have to think . 2009 in MS with carefully about how much energy I’m using. Am I drinking enough water? Am I drinking too much cider? Should I sit down? Do I need to go back to the tent for a nap? Do I need to do all of these things because I have MS? Perhaps… but I’m not 19 any more and every sensible person at the festival is asking themselves the same questions. Have I let MS stop me enjoying U2 or The Rolling Stones at the festival I love? Will I let it stop me watching Metallica this year? Hell no! I just prioritise. You can’t see everything; no one can. In fact, MS or not, I do Glastonbury much better now than I did back in 1993. I wouldn’t be missing the Velvet Underground, for starters.
Open Door August 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
“Do your research, ask questions and don’t be afraid” Steve Woodward on going to gigs There really isn’t anything better than live performance. Many of us are in our 20s-30s when we get our diagnosis, and, speaking personally, I was right in the sweet spot of my musical fanaticism. I’m 40 now and I was diagnosed with MS around 10 years ago. I’ve continued to attend gigs, and occasionally play in them too. Like many things which people with any form of disability do, they invariably require a certain level of planning. I’m also more selective about the gigs I go to, but I think that’s mostly to do with having a three-yearold daughter rather than a decrease in mobility. Full disclosure: my level of disability is still fairly minimal, although I use a stick as a walking aid, and I haven’t – so far – had any issues with venues being impossible to access. Also the sorts of venues I tend to visit are fairly small (and not a little scuzzy). I’ve only ever gone down the front at a couple of select gigs where I knew there was minimal opportunity for a mosh pit. The only BIG venue I ever went to – the O2 – had a terrible sound, so I’m in no hurry to repeat a stadium gig in the future. It also involved a lot of walking (although there was a guaranteed sit-down at the end).
Plan ahead
ACCESS ALL AREAS
Boringly, I’ve been lucky and haven’t got any horror stories about gigs. But that’s not to say I don’t do an inordinate amount of pre-event planning. First up I make sure I know exactly where I’m going, especially if it’s a new venue. If I’ve never been there before, I’ll get in touch to find about parking, access and to spell out my requirements. Sometimes (The Rainbow in Birmingham – a tiny place I visited last year) I’ll get a really helpful response which makes finding a parking space easy and makes me feel really comfortable.
Steve is 40 Sometimes and Head of (Rescue Rooms Marketing at an in Nottingham a arts venue in the couple of weeks Midlands. He’s been attending ago), I’ll get gigs and playing in bands since the NOTHING at all, age of 14. He wa s diagnosed with MS even when I get in 2005. in touch (email, Facebook, Twitter, website) months in advance. To be fair, I’ve been there many times before, so I know it’s always over-capacity and insanely hot. Also, I knew all about parking and toilets (and the need to keep my fluids up) and such like. But still – what if I hadn’t known about it? Not very impressive. If you do your planning, and communicate with the venue about your requirements, there’s really no excuse to stop going to gigs. I use my Disabled Parking badge when required, and try to avoid driving myself. I have a friend who is the same age and has two kids who is always up for a musical experience (cheers, Mike!). On this point, I try not to drink too much. Not only will it wind up the kind soul who has driven me, but alcohol is an irritant, bladder-wise – so the frequent trips to the loos will ruin my enjoyment. I works in an arts venue which also coordinates festivals and outdoor performances, so I’m in a unique position in that I can look at an event and think about how it will affect me, and then implement ways which could minimise problems. However, with modern technology, people with MS really have no excuses – do your research in advance, ask questions and don’t be afraid. And wear earplugs.
to sation dedicated hing is an organi e liv to Attitude is Everyt s access d disabled people’ improving deaf an vel, their team tra d e tickets an fre r fo rn tu re In music. accessibility port back on the re ’ rs pe op sh ry of ‘myste ic venues, clubs rience at UK mus and overall expe and areas for identify strengths d an ls, iva st fe d an t involved visit out more and ge d fin To t. en em improv ing.org.uk attitudeiseveryth
Open Door August 2014
Freephone 0800 032 3839 www.mstrust.org.uk info@mstrust.org.uk
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Photo: Will Morley
“I probably go to the match more now than I did before I had MS. And I enjoy it even more too!” Kaz Laljee on going to the football
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Kaz Laljee is I had MS. And I enjoy it even the founder of more too! You quickly realise that Positive About you’re not the only person with MS, a website and community a disability wanting to go watch that promotes a United. There are many others positive attitude to living with MS. He’s and just as passionate now as 36 and was diagnosed with primary progressive they always have been. MS in 2006. What advice would I give to someone who’s just been diagnosed about going to sports events? Just do it! It’s that simple. You’ll be pleasantly surprised just how well people with disabilities are catered for these days. Most, if not all, venues will have a disability policy and procedure. More often than not, they will also allow a free Carer place, so it’s not hard getting someone to come with you. There’s a real freedom and independence feel about things. Just make sure you plan and organise your journey! To see Kaz’s video of going to a game at Old Trafford see tinyurl.com/kaz-man-utd and to read more about Positive About MS see positiveaboutms.com
blems any pro d vel a h u nts? Le e v e Have yo g ss in g sport od acce attendin ld promotes go n also Fie They ca . Playing s n a f porters t for all led sup to spor b a is d b. ou to local clu r u direct y o y t ed tions a et involv g d n associa a e out mor rg.uk To find gfield.o in y la lp e visit lev
S ACCES EAS R A L L A
I’ve been a Manchester United fan since 1985. The first game I went to see was against Leeds United, I think it was in 1997. I just remember being in awe of the stadium. It’s a surreal experience when you walk up the steps and see a bright green pitch and 50,000 people chanting. When I was diagnosed with MS, I just stopped going to the football. I was worried about climbing the steps and being knocked over in the crowd. I didn’t think football grounds catered for people who struggled with walking or were in a wheelchair. I thought it was something I could no longer do and just watched matches on TV. I found out about the Man Utd Disabled Supporters Association (MUDSA) by accident. I went along to Old Trafford on a non-match day to watch my brother do a zip slide for charity. He’d been telling me for a while that United had wheelchair seats, but I just didn’t want to be part of it. However, when I went along on the day the viewing gallery was in the disabled area and I was really impressed with all the facilities. I couldn’t believe how much care, attention and consideration gone into it! From the accessible entrance and seating area to the lounge area, it was just great. When I went to my first game in my scooter, I was blown away by how organised and friendly the staff were. I probably go to the match more now than I did before
Open Door August 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
“Keeping my sense of style was the one thing I could control” Fiona Jarvis on finding stylish and accessible bars and restaurants
Open Door August 2014
ACCESS ALL AREAS
One of our most popular blog Fiona Jarvis is posts is on ludicrous loos. It’s the founder of funny but disappointingly true. BlueBadgeStyle. com, an online Things are slowly getting lifestyle guide better but it’s an uphill battle. for people living Even though there’s a £2 billion with a disability. secondary with reason to be inclusive (that’s how She was diagnosed . 1989 in MS ive ress prog much people with disabilities spend in the hospitality industry every year), we need to be as vocal and belligerent as the disability movement in the USA. We shouldn’t be an afterthought for restaurateurs. We should boycott premises without disabled facilities and then architects and property developers will listen! After all if Hampton Court or Glastonbury can have disabled facilities, anywhere can! My advice for someone who’s been diagnosed with MS? Don’t compromise or be embarrassed. It took me five years to accept that I wasn’t going to have the body I imagined. Keeping my sense of style was the thing I could control and gave me the confidence to overcome anything.
ACCESS ALL AREAS
When I was first diagnosed, the most frustrating thing was that I could no longer wear high heels. I was also worried I may no longer be able to drive my lovely classic car. Fortunately I was still ok to drive but the heels went to the back of the wardrobe. Eventually I had to walk with two sticks and latterly I was in a wheelchair, so I knew how to cope with various stages of disability. Throughout this time I refused to compromise on my lifestyle. Many people don’t realise that this is one thing you can still control, even if your body has given up. I also realised that I wasn’t the only person that felt that way so I put my findings into a website. I set up Blue Badge Style because I found colleagues, friends and family often asked me where they should go for lunch or a night out. I always knew the latest cool place to go. I also kept a list of stylish places to take clients and made a note of the access and facilities, as by that time I had to walk with a stick (antique of course). I didn’t want to be embarrassed by a client having to carry me up some steep staircase. From my own experience I know that a shop or restaurant might have a ramp, but how far away are the Ladies and how many flights of stairs are there? In addition to our website, we now have a Blue Badge Style smartphone app which reviews hundreds of events, bars, restaurants and hotels, as well as disability aids and accessories, and campaigns for better access for all. Some venues have made changes as a result of Blue Badge Style, but they’re few and far between. Cost of installing facilities and the excuse that there’s not enough space or it’s a listed building are the usual reasons for no disabled facilities. Sometimes there are facilities but they are totally useless.
To find out m ore about Blu e Badge Style visit ww w.bluebadge style.com or download the app from th e Google Play Store o r the Apple s hop.
te There are now quite a few websi des and apps offer accessibility gui ? any to UK venues - have you used Let Which have you found useful? r us know and we’ll publish you suggestions on our blog. Email opendoor@mstrust.org.uk or call 01462 476700
Freephone 0800 032 3839 www.mstrust.org.uk info@mstrust.org.uk
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M S A ND M O OD
Two in a million Graham and Nicki Law got married in 1997. Since then they’ve discovered that they are one of only a handful of couples in the UK where both partners have MS. Here they share their story and explain how they’ve found that mindfulness can help them deal with their symptoms and support each other. Graham’s story In 2000 Nicki went to her GP with a numb leg. The GP immediately said it could be an early symptom of multiple sclerosis, MS. I found the news devastating, worrying, terrifying. What would happen to Nicki, to our children, to us? Still reeling from this news, a year later I began feeling some weird sensations in my legs and arms. I had weakness, balance problems, pain and numbness. Pull yourself together, I thought, you’re just copying Nicki. Nobody likes a hypochondriac. This is not how you were brought up. But I realised that the temporary blindness, difficulties swallowing, the weird tingling in my hands when I looked down, all added up to the same thing. After seeing a neurologist I was diagnosed with MS also. I felt angry. Why was this happening? I didn’t want to hear about the disease, about the future. I wanted to do the bloke’s thing and pretend it wasn’t happening.
Nicki’s story I’m a GP – it’s a job I love. As a member of the medical world, you’d think I could deal with learning about my diagnosis of MS. But, as a person in this profession, I felt that I was not allowed to be ill. The irony that illness is frowned upon by other doctors and by managers. There’s a feeling that you’re letting the team down. During the difficult early times I began to explore yoga. I have not looked back since then. Graham, ever the sceptic, couldn’t see how “an hour’s lying down” could provide any benefit. He keeps telling me that he is a born sceptic. His turning point was when he spent two weeks exploring his mood, his mind and his leadership style on another work course. He came back a different person. He had spent time exploring mindfulness and yoga, which meant he had to eat his words when he came home.
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Our story So, here we are: we both have MS. In some ways it’s helpful both having the same disease. We understand each other. We can be sympathetic about new symptoms and share the experiences we have which others wouldn’t understand. We both experience a squeeze around the ankles, the ‘MS hug’. We both have bouts of fatigue. People who have not suffered from this thinks that it means tiredness, that a good night’s sleep will sort it all out. Fatigue is not this, it is a complete exhaustion. We both recognised that responding badly to stressful events made us unwell and knew we had to look at ways to avoid this. For both of us, yoga and mindfulness have opened a whole world of calm. We’ve developed an understanding of our bodies and minds. We’ve learned breathing techniques help to calm the body, allow the body to renew. This helps us to feel more ready to deal with the next thing, the next event in life. The anger that Graham used to suffer from, leading to denial, is a thing of the past. We are both much more aware of our bodies and minds and recognise times we need to slow down, take time out. There are still hurdles ahead. But we feel very lucky to be together to face whatever comes our way.
Open Door August 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
M S AND MOOD
“Being mindful allows you to focus your attention on the present...” Everyone has good days and bad day but no mood lasts for ever. In Graham’s book, Feel Good, he looks at techniques for improving your mood and coping with whatever comes your way. Focus on what you can do, not what you can’t
Practice relaxation and mindfulness
This will help you to improve positive feelings and raise your self-esteem by reminding you that, even if you can’t do everything you used to do, there are still lots of things you can achieve and feel good about. I know from my own experience that when you get a diagnosis of MS, your self-acceptance takes a blow. This exercise can give you a good way of coping. Every evening for the next week, write down something that you have done well or completed to the level you hoped. This could be anything: something simple such as cooking a nice meal or tidying a cupboard that has long needed some attention. Write “I have had a success today because...” and complete the sentence.
Mindfulness is about being aware of how your body feels, your emotions and the sounds and sights around you, as they are happening. Being mindful allows you to focus your attention in the present. It helps you to stop thinking back to the past and how things could have been different and worry less about what might happen in the future. There are many popular books and apps that will help you to pursue this. Spend five minutes each day practising mindfulness: sit or lie comfortably, close your eyes and focus on your breathing. Notice how it feels. You may hear sounds around you. Observe these without thinking about what they are, or where they originate. You may recognise feelings in your body, in your legs, arms, back, or any part of your body. You will find that thoughts drift into your mind. Notice them, but don’t interact with them. Allow them to drift and watch them as they float away. This requires practice but you will feel the benefits as you learn to rest your mind.
Focus on your goals MS doesn’t have to mean giving up on your goals, just changing the ways you might achieve them. Research has shown if you have a strong purpose in life you’re more likely to deal with stress better. What are your goals? Make a note of them on a post-it note. How are you going to achieve them?
MS and mindfulness Graham’s book, Feel Good: How to manage your mood and deal with whatever comes your way, is published by Capstone, a Wiley brand. Everydaymindfulness.org.uk is an online community about mindfulness that was founded by Gareth Walker who has MS. BeMindful.org.uk is a website run by the Mental Health Foundation to raise awareness of the benefits of mindfulness-based therapies as a treatment to improve mental and physical health. The MS Trust’s DVD Move it For MS includes a series of relaxation exercises ideal for people with MS. To order you copy see mstrust.org.uk/ pubs or use the order form on p23. For more on mindfulness see mstrust.org.uk/ meditation
Open Door August 2014
Freephone 0800 032 3839 www.mstrust.org.uk info@mstrust.org.uk
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FOCUS ON
Having a baby In the May issue of Open Door we covered pregnancy and MS. In this issue we look at some of the questions mums with MS ask about childbirth and caring for a newborn baby. What can I do to prepare for the birth? Antenatal classes provided by the NHS or other organisations such as the National Childbirth Trust are a great way to learn more about the options available during labour and delivery. They are also an ideal opportunity to meet other expectant mums and find out about local health services and support such as mother and baby groups. Many women choose to make a birth plan which records where you would like to give birth, who you would like to have with you, preferences for pain relief and how you feel about interventions such as forceps delivery. If you have MS this can be even more important. Not all the health professionals that might see you during labour will be familiar with MS, so it will help if your birth plan documents that certain procedures, such as epidural anaesthesia, are safe for mums with MS. If at all possible, request a meeting with your whole team including midwife, MS nurse and anaesthetist to draw up your birth plan and don’t be afraid to ask for what you want! You can find more info about preparing a birth plan on NHS Choices: tinyurl.com/msbirthplan
Will MS affect my labour or delivery? MS does not usually affect labour or delivery. The frequency of complications during labour in women with MS does not generally differ from that of women without MS. Birthing positions, techniques for coping with fatigue or spasticity during labour can be discussed with a midwife in advance and recorded in your birth plan. Some women with MS have recommended a water birth, for both the extra support and the cooling that the water provides.
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At delivery, safety of mother and child is paramount and there may be medical reasons for an assisted delivery – eg a forceps or vacuum delivery – or delivery by caesarean section. A caesarean delivery may be recommended if your MS symptoms would affect your ability to push effectively during labour, but should not be advised solely on the grounds of MS, as recovery afterwards takes longer than from a vaginal birth.
What pain relief is available? Women with MS can generally use most types of pain relief during labour, such as pethidine, entonox (gas and air) and epidural anaesthesia. No adverse effects on delivery or course of MS have been associated with epidural anaesthesia. TENS machines can be helpful with pain relief in the early stages of labour. However, some women with MS have reported that TENS machines can trigger leg spasm during labour, so it might be worth discussing this with your MS team and midwife in advance.
What can my birth partner do to help? The most important thing that your birth partner can do is just be with you, providing emotional and physical support. If they’ve accompanied you to antenatal classes and have helped you draw up your birth plan, they’ll have a good idea of what you would prefer. They can help pass the time during the early stages, help you change positions, massage your back and shoulders, comfort and reassure you as labour progresses, help you with relaxation and breathing techniques, support your decisions such as the pain relief you have chosen, and help explain what you want to the midwife or doctor and help you understand what the midwife or doctor need you to do.
FOCUS ON: HAVING A BABY Life with your new baby Can I take medicines after the birth?
Will I be able to manage? Coping with a new baby can be demanding for any new mum, so make the most of offers of help. If possible, try discussing in advance the type of help that you would most welcome. This could be help with housework, restocking the fridge/freezer, night feeding, looking after the baby for a while to allow you to catch up on sleep or just having a bit of time to yourself. If you can’t get help from friends and relatives, it might be possible to have help arranged through social services or your health visitor. It’s easy to feel isolated when caring for a small baby, so it’s worth making time to get out and meet other new mums “My health visitor in a similar situation. Your midwife recommended and health visitor will know of mother some mums and baby groups in your area and groups. I wasn’t organisations such as the National sure at first but I’ve Childbirth Trust run local groups. Chatting to other parents at baby clinics made some great can help you cope with the ups and friends.” downs.
Will I have a relapse? There is an increased risk of having a relapse during the first three months after your baby is born, so it’s worth making contingency plans with family and friends, just in case. However, one of the larger studies which monitored relapses before, during and after pregnancy reported that, despite the increased risk for the first three months, twothirds of the mums did not experience a relapse during this period. Women whose MS had been more active in the year before pregnancy, and those who had a relapse during pregnancy, were more likely to experience a relapse after having a baby.
Can I breastfeed? MS cannot be passed on through breast milk and research has shown that breastfeeding is best for the health of the newborn baby. However, how you feed your baby is a person choice. Some new mums with MS will have understandable concerns about fatigue and may prefer to bottle feed, since this can be shared with others. On the other hand, once established, breastfeeding is quicker and more convenient than bottle feeding. You have to weigh up the pros and cons for your own situation.
Open Door August 2014
Disease modifying treatments can be present in breast milk. Since the effects of these drugs on the baby are unknown, mums are advised to delay starting treatment while breastfeeding or to stop breastfeeding in order to start treatment. The decision will be influenced by your previous history of relapses. Steroids can also be present in breast milk and “My MS nurse there has been very little was great at research into the potential helping me work effects on the baby of the out a feeding high doses used to treat MS routine that relapses. You can express worked for me” as much milk as possible before starting the course of steroids and store this for use while taking steroids. You can express and discard milk during your treatment period (usually 3–5 days) and resume breastfeeding 1–2 days after the end of treatment. Your MS nurse and neurologist will agree timings with you. Other drugs taken to treat MS symptoms such as nerve pain or spasticity may not be recommended during breastfeeding but there may be safer alternatives. Talk to your MS team, midwife or GP for advice.
Further reading Look out for a follow-up article on looking after a toddler in the next issue of Open Door Disability, Pregnancy and Parenthood International publishes practical guides on a range of topics including bathing, nappy changing and dressing, and carrying a baby or child on a wheelchair. See dppi.org.uk Mums and MS website: mumsandms.coventry. ac.uk You can read the Baby, MS and Me blog at mstrust.org.uk/ interactive/ babymsme
Read our free factsheet on pregnancy and parenthood – see mstrust.org.uk/ pregnancy or use the order form on p23
Freephone 0800 032 3839 www.mstrust.org.uk info@mstrust.org.uk
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G E T IN V O LV E D
With a little help from our friends We’re constantly inspired by the amazing work of our community fundraisers. Now some of you are joining together to make supporting the MS Trust even more fun, more social and more effective. Donna from our fundraising team introduces the new Friends of the MS Trust groups Community fundraising is vital to our work. Last year MS Trust supporters like you raised a quarter of a million pounds. That’s enough for us to train over 100 MS nurses to support thousands of people living with MS! You’ve organised coffee mornings, cycled across the country, baked cakes, grown beards, shaved your heads and come up with loads of wonderful ways to raise money. We’re grateful to all of you who volunteer your time and energy to help us support people with MS. We encourage everyone to join in! Anyone can get involved in community fundraising. You could do something as simple as putting a collection box in your local shop. Or you could organise a coffee morning, quiz night or glittering gala balls. It all makes a difference! We can provide tips and materials to make your event or activity a success. Everything you raise – £30 from a tombola or £300 from a concert – means we can be there for someone with MS. And with our new Friends of the MS Trust groups you could join forces with other MS Trust supporters to achieve even more for people with MS! Friends of the MS Trust groups are led by volunteers who are dedicated to raising money and awareness for the MS Trust in their community. We already have two established groups in the North East and in Scarborough
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Michele, Pam and Jon: founders of Scarborough & North Yorkshire Friends of the MS Trust
and North Yorkshire, but we are looking for more enthusiastic people to lead fundraising efforts for the MS Trust in their local area. Fundraising groups are a great way to meet people in your community, to have fun, gain new skills and, of course, support the work of the MS Trust. And you will not be out there on your own – you will have our full support. Jon Burch formed the Scarborough and North Yorkshire group with his friends Pam and Michelle Cockshott. “Friends of the MS Trust is a great idea,” he says. “We are honoured to be one of the first groups formed. Pam and Michelle have been involved with the MS Trust for about 10 years and have raised around £16,000. After a couple of Great North Runs, cycle challenges and learning to swim, I have helped boost that to well over £20,000. Are you passionate about We want to make helping people with MS? sure the MS Trust can Would like raise funds in your continue to be there community? If you’re interested in forming for everyone that a Friends of the MS Trust fundraising relies on them.” group with like-minded folks in your area I’d love to hear from you. Give me a call on 01462 476707 or email volunteer@mstrust.org.uk It could be the start of something beautiful!
Open Door August 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
GET INVOLVED
Get involved! There are loads of ways you can get involved and support our work helping everyone affected by MS. Here are just a few ideas. To find out more visit mstrust.org.uk/fundraising DIFC Santa Run Run, jog, walk or use your wheelchair or scooter around London’s Victoria Park on 7 December! This is a great accessible event for all the family and there’s a free Santa suit for every entrant! mstrust.org.uk/santarun
Could you spare one morning or afternoon per week in the six to eight weeks before Christmas? If so, we need your help! The MS Trust participates in the Cards for Good Causes national network of temporary Christmas card shops in churches, libraries and museums, selling cards on behalf of more than 300 charities. Sales from these shops contribute around £50,000 every year to the MS Trust – vital funds to help us to help people affected by MS. Most Cards for Good Causes shops are staffed by volunteers from participating charities. Volunteering in a shop near you can be a great way to get work experience, learn something new and meet people in a friendly environment, all while supporting the work of the MS Trust. Managers are also needed for some shops. This is a great temporary role for somebody who enjoys working with people and figures. Managing a Cards for Good Causes shop is straightforward and requires no special qualifications other than common sense and enthusiasm. In return for a three month commitment, a small remuneration with be paid to the shop manager at the end of the trading season. “Isolation was an We need volunteers issue when I was first and shop managers in diagnosed. Volunteering many locations across helps me interact with people England. If you’d and I now feel part of the like to know more team.” Sharon, Shop call 01462 476707 Volunteer or email fundraising@ mstrust.org.uk for more information.
Open Door August 2014
Monster Ski, Chamonix Ski or snowboard the height of Mount Everest every day in our Monster Ski challenge, taking place from 13–17 March 2015. There’s an early bird discount until 8 September! mstrust.org.uk/monsterski London Marathon If you are looking for a place or if you have a place and would like to run for the MS Trust on 26 April 2015, please get in touch. mstrust.org.uk/londonmarathon
Three chances to join our cycle team! London to Paris Cycle Ride Take part in this classic cycle challenge from 20 to 24 May 2015 in aid of the MS Trust (other dates available). mstrust.org.uk/londontoparis 3 Cities Cycle Ride Cycle from London to Brussels via Amsterdam from 27 to 31 May 2015 (other dates available). mstrust.org.uk/3cities Prudential RideLondon-Surrey 100 Cycle 100 miles on closed roads from London to Surrey in August 2015 (date tbc). mstrust.org.uk/ridelondon
To find out more about supporting the work of the MS Trust call 01462 476707 or visit mstrust.org.uk/fundraising
Freephone 0800 032 3839 www.mstrust.org.uk info@mstrust.org.uk
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15
minutes with
MS blogger
Amelia Southard
Amelia Southard is a writer and blogger who lives in Devon. She was diagnosed with MS in 2002. Earlier this year she took part in the MS Trust Continence Question Time, a series of short videos looking at some common MS bowel and bladder problems. What inspired you to start blogging? I started because I had to stop working in 2009 and my husband Martin suggested that writing a blog might help me. I thought about it and decided that I would start writing. If I could help just one person then it would be worth it, so I started Tales of Life With Multiple Sclerosis (talesoflifewithmultiple sclerosis.blogspot.com). Has it been therapeutic? Blogging is very therapeutic for me! It turns out that I’ve found something I didn’t realise I was good at doing! I have been complimented about my writing. People say it is very straightforward and easy for people to understand. I just write as though I was talking to someone and it seems to work! Ever since the onset of my first symptoms, I have always tried to find ways of explaining what I’m feeling to Martin. He always wants to know what I’m going through, so I always try and express what a particular symptom feels like because he can’t see it. For example, the altered sensations that I have in my feet. Sometimes my toes will be burning, like when it’s freezing cold and you’ve been outside and then you come into a warm room and your toes burn as they come back to life, – except I won’t have been outside in the
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cold and they don’t ever come back to life! How does it feel to know that your article on constipation for Open Door has been one of our most popular articles over the last 10 years? I’m blown away by it but also, in a way, it makes me feel proud because it means that I’ve potentially helped people, and that is all I wanted to do when I started writing my blog! It took me a while to decide, once I had actually written it, whether I was going to publish it. It was a very personal post about a subject that generally is not spoken about. But that was one of the reasons why I decided to go ahead and publish it. We need to be able to talk about these issues. Everyone is made the same and everyone has these issues so why should we be embarrassed about it? The fact that so many people have read it says quite a lot too, doesn’t it? You love the theatre. How accessible do you find venues? Singing and musical theatre was what I trained to do and is probably one of the things I find the saddest about getting MS, that I am no longer able to perform in shows. But having said that, we have been able to do some fundraising concerts raising over £6000 for local MS charities, which is quite satisfying! On the whole theatre
venues are reasonably well equipped to deal with people with disabilities. They’ve had to adapt to all the new disability laws. The problem in London with theatres is that they are all quite old, so adapting them hasn’t been an easy thing to do. But they all do what they can!
Amelia with her husband Martin.
What advice would you give someone who’s just been diagnosed? Firstly just breathe. Your life isn’t over, it just may not be going in the direction that you thought it might. I would also say that MS is a complicated condition. There are many different symptoms but that doesn’t mean that you will end up with all of them. It not a forgone conclusion that you will end up in a wheelchair. I’ve always said that you could have a room Watch the MS full of people who Trust Continence have MS but our Question Time videos at experience of mstrust.org.uk/CQT the condition, To see our free bowel and although it may bladder publications visit be similar, won’t mstrust.org.uk/continence be identical. or use the order form on
Open Door August 2014 Facebook: facebook.com/mstrustuk Twitter: @mstrust
p23.
Information from the MS Trust For a full list of resources or to read online visit mstrust.org.uk/pubs
Books Primary progressive MS
Secondary progressive MS
Falls: managing the ups
and downs of MS
The kids’ guide to MS
MS explained
Disease modifying drug therapy
Sex & MS: men
Sexuality & MS: women
Managing your bowels
Managing your bladder
Falls
Living with fatigue
Alemtuzumab (Lemtrada)
Dimethyl fumarate
Depression
Laquinimod
Vitamin D
Pregnancy & parenthood
Pain
Clinically isolated syndrome (CIS)
Cognition
Diet
Stem cells
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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Address Postcode Email Data Protection Act: MS Trust and our trading company value your support and promise to respect your privacy. The data we gather and hold is managed in accordance with the Data Protection Act (1998). We will not disclose or share personal information supplied by you, with any third party organisations without your consent. We would like to keep you informed about the vital work we do; if you do not want to receive this information please let us know.
All items are free but we are only able to offer free, practical, reliable information thanks to the donations of people like you. With your help we can ensure no one has to deal with MS alone. I’d like to make a donation of £5
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Tick the gift aid box and for every £1 you donate, we will receive an extra 25p from HMRC at no extra cost to you! I am a UK taxpayer and I wish the MS Trust to treat this donation, and all future donations until I notify you otherwise, as Gift Aid donations. Signed
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Return to MS Trust, Spirella Building, Bridge Road , Letchworth Garden City, Herts SG6 4ET
Two new books on progressive MS from the MS Trust Primary progressive multiple sclerosis The revised edition of this popular book looks at what primary progressive MS is, how it’s diagnosed and how it can affect you physically and emotionally. It also explores what treatments and therapies are available, ways you can stay healthy and independent, and introduces useful resources. “This book will be an essential eye-opener to the newly diagnosed and valuable to those of us who need to keep up to date with our present or changing circumstances.” – Edith Rifkind
Secondary progressive multiple sclerosis This new introductory book will be useful whether you have secondary progressive MS or if you want something to pass to family and friends to help them understand. It explains what secondary progressive MS is, how it’s identified and why a diagnosis is not always straightforward. It also looks at how how you can stay healthy and independent and which health professionals can help. “The language is clear and easy to understand without being patronising and all of the topics covered are valid and useful.” – Jay Denton
To order your copies see the order form over the page or visit mstrust.org.uk/pubs We can only make our publications free thanks to the support of people like you. If you’ve found our information useful visit mstrust.org.uk/getinvolved to find out you can help us to help others.