Summer 2020 • Issue 135

Scott Mills lifts spirits with virtualquiz pub

Inside Our Never Alone campaign How we’ve been reaching out to support you at home

1 Cover_MS Matters Summer 2020_MS Matters 1 09/07/2020 08:53 msmatters CONTENTS UK

Issue 135 Summer 2020

Life with MS is unpredictable enough without all the uncertainties of the last few months. In this issue of MS Matters, we look at how – together – we’ve responded to coronavirus. As some of our staff were furloughed, and to save money on printing, we’ve combined MS Matters and Research Matters for this issue. We will bring out both magazines again in the autumn. We’re still committed to pushing forward vital MS research despite the effects of coronavirus (read more on page 16). We know MS can be isolating at the best of times and we did everything we could to make sure that although we were at home, no one was alone. We launched new online and telephone services (see page 12) and continued working hard to infl uence decision-makers across the UK on issues that have affected you during the pandemic (see page 11). To bring some light-hearted entertainment 18 Scott Mills introduces to the long weeks in lockdown DJ Scott Mills our exclusive quiz hosted a regular virtual pub quiz for us, which raised £55,000. In case you missed it, there’s an exclusive quiz from Scott for MS Matters readers on page 18. NEWS 18 COVER STORY: MS Matters I’ve been so impressed by the way the MS quiz with Scott Mills 7 Our pledge to being a more community has risen to the challenge. Local 21 Fampridine approved for equal organisation groups across the UK quickly got to grips with use in Scotland 8 MS Register builds a picture technology like Zoom to reach out to members of MS in the UK (see page 22). And on page 52, we look at how INSIGHT 11 Speaking up for people with you’ve adapted your fundraising activities to MS during lockdown 22 Local MS groups support the constraints of the lockdown. 12 New services help make sure members online Like many charities, coronavirus has had a you’re not alone 26 Let’s talk about sex negative impact on our fi nances. We do need 16 MS researchers adapt to hormones people to carry on supporting us through COVID-19 fundraising and donations. However, we also know that many of you will have been affected fi nancially and appreciate that now might be a diffi cult time. Make your donation go further At the beginning of July, as I write this, I know Did you know that giving direct from your salary is one of the easiest that some of you are likely to be shielding still and most tax-effi cient ways of donating to our work? Because your and may feel anxious about resuming daily donation is taken out of your wages before tax, if you donate £5 to life. Please keep an eye on mssociety.org.uk/ us, it actually only costs you £4, or even less if you’re a higher rate coronavirus-updates or call our MS Helpline on taxpayer. Find out more at mssociety.org.uk/payroll 0808 800 8000 for the latest information.

Nick Moberly Chief Executive

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Research stories

Find out how the MS Register is building a picture of life with MS (page 8), learn about sex hormones and MS (page 26) 4488 HHow our strategy t t can hlhelp everyone and discover the with an MS story latest research into stress and anxiety in MS (page 28). 52 Fundraising at home 51 Cake Break goes virtual

Need support or information? Call our talk MS Helpline on 0808 800 8000 or email [email protected] Want to talk to other people with MS? Our online forum is a welcoming space for you to share experiences. Get to know your MS community and join the conversation. Visit community.mssociety.org.uk Got a question about membership? Need MS Matters on CD? Call our Supporter Care team on 0300 500 8084.

28 Ask the expert: your COMMUNITY VIEWS GET INVOLVED questions on stress and 36 You tell us how you’ve coped 51 Kadeena Cox and the anxiety answered with life during the lockdown Hairy Bikers get baking 31 Financial and emotional 39 Blog spotlight: invisible for Cake Break support in Manchester symptoms 52 Five ways you’ve adapted 57 Gardening with Tony 41 Exploring a virtual world to fundraising at home Johnstone 58 Creative corner: novelist 55 Lily’s My MS Walk Samantha Henthorn REAL LIFE 32 Real life stories: three people COMMUNITY NEWS talk about the difference 42 Membership: building a volunteers have made in stronger community their lives 45 Spotlight: Research Network 35 Colin Goodman on fi nding a volunteer and MS choir lifestyle that works for him 47 Meet MS Helpline nurse MS Matters is a Multiple Sclerosis Society publication ISSN 2517-6919. © Multiple Razia Khan Sclerosis Society 2019. Individuals or organisations wishing to reproduce, store in 48 How our strategy can help a retrieval system or transmit by electronic, mechanical, facsimile or other means any part of this publication should apply for permission to: MS Matters, MS Society, everyone with an MS story 372 Edgware Road, London NW2 6ND. Registered charity nos 1139257/SCO41990. Registered as a company in England and Wales 07451571. Acting Editor: Miriam Jones. Assistant Editor: Hannah Maunder. Research Editor: Katie Howe. Designed by Redactive Media Group. Cover image supplied by Scott Mills. Advertising sales: Redactive Media Group, 020 7880 7668. Printed in England by Warners Midlands plc. Articles signed by the authors represent their views rather than those of the MS Society. Mention or advertisement by the MS Society of products or services is not an endorsement by the MS Society, its offi cers or staff.

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04-05 Contents_MS Matters Summer 2020_MS Matters 5 09/07/2020 08:55 News

Our renewed commitment to being a more equal organisation

vents over the last few weeks put in place a dedicated talent programme following George Floyd’s tragic death to encourage the development of staff have affected many of us deeply to secure promotions, with a focus on – and have led us to refl ect on our those from backgrounds that are currently Epractices here at the MS Society. underrepresented. In response, we’ve spent time looking closely at our organisation and whether On the back of a research project we’re living up to our commitment to we commissioned last year into the having an equal, diverse and open culture. experiences of people with MS from diverse Some might say it isn’t our core purpose backgrounds, we’ll continue to work with to speak out on these issues, but we need BAME members of the MS community to acknowledge the impact racism has on to understand how we can make our people – including the MS community and organisation more welcoming and inclusive, our colleagues. and to work out whether new services are required to meet their specifi c needs. Our pledge We’re making a renewed commitment But we know this is not enough. We’ll that the MS Society will be a more equal continue to refl ect and discuss, and we are organisation and will better represent currently revising our Equality, Diversity and people from diverse communities across the Inclusion strategy. UK. We know we have a lot of work to do. To fi nd out more, please visit mssociety.org.uk/equality-commitment At leadership level we’re not diverse – we need to change that. We’ve recently We usually publish a selection of letters from introduced name blind recruitment MS Matters readers on this page. However, processes for all roles. We’re also engaging a in response to recent events, we wanted to specialist recruitment agency who will focus share our commitment to better represent on attracting applicants from Black, Asian people from diverse communities. and minority ethnic (BAME) backgrounds to Your letters will be back in the next issue of apply to become a Trustee of the MS Society. the magazine. We love to hear your feedback

on the magazine and the articles you’ve read. We’ll increase our efforts to support and Do share your thoughts by writing to us at encourage BAME applicants to all senior [email protected] vacancies across the organisation. We’ll

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iStock news

How has the MS Register responded to COVID-19? The MS Register team reacted swiftly, and set up questionnaires to gather information about how COVID-19 is affecting people with MS. It was important to do this in “real time” and not by looking back after the event. We wanted to know: How many people with MS get infected? What symptoms do they have? How are they affected psychologically? What is the effect of shielding? We’ve been working with the MS Society and other collaborators to make sure data from the MS Register recently So how does the MS we’re gathering relevant information. revealed some of the hidden costs Register work? of living with MS and that many People affected by MS submit What have we learnt about people with MS also experience information through online COVID-19 and MS? depression and anxiety. It also helps questionnaires and UK hospitals The data told us that some people us lobby the government on issues also provide information from had their pay or hours reduced affecting people with MS and develop participants’ medical records – if due to COVID-19 and 35% said the better services. they give consent. The responses are outbreak would negatively impact Evidence is especially important stored securely and can be linked their fi nances. Some people have also during this pandemic. As new together to build up an accurate had their care reduced or cancelled. information arises recommendations picture of MS in the UK. The MS This information has helped the MS may change. We need to know how Register is principally people-driven, Society to make sure people are people with MS are affected to work as opposed to many other getting the support they need. out the best course of action. international MS registers which are Initial data from the UK also suggests driven by healthcare professionals. that people with MS aren’t more New surveys are constantly being “Because likely to get coronavirus or get worse added as we learn more about the symptoms, which is similar to what condition. It’s been funded and COVID-19 is so we’re seeing in other countries. We’re supported by the MS Society since continuing to monitor this, though, the start. new, we are all as we don’t know what will happen as restrictions ease. Because COVID-19 How do people with MS shape still learning” is so new, we’re all still learning. the MS Register? The MS Register is a vital tool for Patient and public involvement has How much data has the MS understanding all aspects of living always been part of the MS Register. Register collected? with MS. We’re delighted to have Questionnaires are generated During the last nine years, over been able to use it to help quickly by people with MS, alongside 90,000 questionnaires have been answer questions about COVID-19, researchers and clinicians. Ultimately answered, many of these with which are so important for our the data is “donated” by the MS 20-30 questions in each. Over 17,000 ongoing learning curve about community. It’s very valuable and people have submitted data. the virus. must be treated appropriately.

What can the data be used for? Evidence from the MS Register can Find out more about the UK MS Register and how help us fi nd out more about living you can take part: ukmsregister.org with MS in the UK. For example,

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8-9 MS register_MS Matters Summer 2020_MS Matters 9 09/07/2020 08:56 News

Speaking up for our community in lockdown Photo: Shutterstock Photo:

t can be diffi cult enough to deal Getting the right care of the pandemic, the NHS is slowly with MS without coronavirus and and treatment starting to return to normal service, lockdown in the picture too. We’ve We know that the pandemic has so we’re speaking to decision- been working hard to infl uence put even more pressure on carers. makers about the need to prioritise Igovernments and decision-makers We’ve heard from people with MS neurological conditions. across the UK on issues affecting our who’ve felt they have to cancel community during the pandemic. paid care to protect themselves You’ve been speaking from people coming into their up with us The issues are evolving home. Some of you may have had We’ve been speaking up loud and all the time your care reduced by your local clear as a community too. As part of When lockdown began, lots of you authority, or found that your carers the Disability Benefi ts Consortium, told us you couldn’t access food aren’t available due to being unwell we came together to call for and essentials, so we’ve called on or isolating. Employment and Support Allowance supermarkets and decision-makers We’re calling for an increase to and other out-of-work benefi ts to be to give vulnerable people and carers Carer’s Allowance across the UK, and increased by £20 a week. The petition priority access. for carers to have access to personal has been signed by over 116,000 We also heard that many people with protective equipment (PPE) and people. We’ll keep you updated MS weren’t able to register as “clinically testing, to help keep them on what happens next. vulnerable” to access vital support. We and the people

raised this with governments across they care for

the UK and we’re pleased that changes safe. We’re For information have been made. pleased testing Many of you have shared your about coronavirus Now, we’re speaking up alongside is now available, lockdown experiences with and MS visit other charities to make sure that as and there’s us – but we’re always keen to mssociety.org.uk/ the lockdown measures change, the now guidance hear more. You can share your coronavirus- right support is still there for everyone. for carers on story with us by visiting updates or call the This could be mental health support, accessing PPE. mssociety.org.uk/ MS Helpline on for example, or not having to return to As we move share-your-story 0808 800 8000. work until it’s safe to do so. beyond the peak

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11 Campaigning_MS Matters Summer 2020_MS Matters 11 09/07/2020 08:57 Care and Support

At home, but not alone How our Never Alone campaign has been supporting people living with MS during the coronavirus crisis.

hen the UK went into lockdown adapted and brought forward aspects of our new on 23 March, we had to quickly befriending service, which we’d planned to launch rethink how we supported each later in 2020.” Within weeks, Ahra and her team other, without being able to connect had set up the telephone service Keep in Touch, Win person. From physio on FaceTime to chatting which offers people a weekly catch up with a online, we worked together to make sure that friendly volunteer. although we were at home, no one was alone. To get things going quickly, some MS Society staff volunteered for the service, including Evidence Keeping in touch Offi cer Brooke Lumicisi. Brooke said, “It’s been After lockdown there was a big surge in calls to lovely to be a part of the service. We’re in such our MS Helpline. Many people calling were anxious uncertain times, and a friendly chat can really lift about being isolated. the spirits on both ends of the line. Even something Helpline Services Volunteer Manager Ahra An as seemingly small as a phone call can help us to said, “We wanted to do something to help, so we feel connected.”

12 MS Matters Summer 2020

12-14 Never alone_MS Matters Summer 2020_MS Matters 12 09/07/2020 08:57 Care and Support

Our new befriending service Before lockdown, we knew many people with MS were already experiencing isolation and loneliness. We hope our full befriending service, which is planned to launch at the end of July, will support anyone feeling this way. The service will be available long after lockdown is over, while Keep in Touch will run until the end of September. Ahra said, “The befriending service matches you to a particular volunteer, who’ll call you once a week for about three months. Whereas MS nurses join our helpline with Keep in Touch, you speak to a different Our very fi rst MS Helpline nurse, Jennifer volunteer each week. Either way, the calls can McNeil, began work on Monday 23 March – make a big difference.” the day the lockdown started. Unsurprisingly,

Jennifer has been answering lots of questions A lifeline to the outside world relating to coronavirus. “I’ve certainly learnt a lot Kate has been using Keep in Touch. “I’ve been about it!” she said. pretty anxious,” she said. “My carer is not Jennifer has also been supporting people coming to see me now and I had struggled to who got their MS diagnosis during lockdown. get prescriptions and pick up shopping. The “It’s a shock and people have lots of questions isolation has not been easy either – I haven’t but many of the nurses and neurologists were seen a soul for four months. redeployed,” she said. “Keep in Touch has been a lifeline to the Life has still been going on despite the outside world. It’s a friendly voice on the other pandemic, and MS doesn’t take a back seat. end of the phone when I have literally no “People are getting diagnosed, people are contact with anyone else. It’s been lovely to talk having symptoms, people have questions about to someone who wants to know how I’m doing medications,” Jennifer said. “It’s important you and takes an interest.” still get the support you need. We’re always

here on the MS Helpline as an extra resource if you’re struggling to get hold of your MS team, or if you’d just like some more time to go over things. “We can’t give direct medical advice so always remember you can contact your GP – they are still here for you. It’s the same with the MS nurses – leave a message even if they can’t get back to you quickly.” Jennifer’s been joined by our second MS Helpline nurse, Razia Khan (who tells us about herself on page 47). Our nurses will be here for everyone affected by MS after this crisis is over.

Ways to connect online Our team of staff and volunteers in Scotland have been developing online support for a few years now, and were starting to roll it out across

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Rachel can give advice on posture, exercising, strengthening and stretching. She misses seeing people in person but has also found benefi ts. “It’s opened up the service to people in Northern Ireland who live far away from our Belfast Centre.” In Wales, our team have also found new ways to reach out. They put in a successful bid to the Lottery COVID fund to extend their Welsh-wide project My MS, My Rights, My Choices until the end of 2020. This means the MS community in Wales can still the UK. So, when the pandemic connecting and keeping in touch access one-to-one support with struck, they were well-placed when they might not have been able emotional, fi nancial, employment, to quickly increase this support. to otherwise.” health and housing issues - now over This includes wellbeing sessions, the phone or by Zoom. interactive information webinars and Friendship and comfort

Time to Chat groups (informal virtual Barbara is among those who have What’s next for our services? meet ups). taken part in Time to Chat. “I wanted Although lockdown is easing for many, Clair Bryan, who leads the team, to feel a little bit less alone during we still don’t know what the future said, “We knew a lot of people were this time,” she said. “I was looking holds. Will delivering more services in feeling scared and overwhelmed for friendship and the comfort of this way be our “new normal”? with information about coronavirus. speaking to other people who just Clair believes it shouldn’t replace In response, we held a number ‘get’ MS but also who what we do, but can add to it: of webinars about understand the “Face-to-face contact will always be COVID-19 and MS with particular impact important, and in time we’ll be able to top neurologists – 250 this crisis is having restart those services,” she said. “But people attended on us. Everyone even without coronavirus, meeting our fi rst one. Now had a chance to face to face can be challenging. we’re doing one speak (or not if they MS fatigue, geography, work and or two webinars a didn’t want to) and childcare can all make it diffi cult for month on issues it was just like people to travel. Services you can such as health getting together access at home give people more anxiety, employment and with some mates. choice in how they get support. exercise. And we’ve run I really hope Hopefully, that can only build the MS 64 Time to Chat sessions, this kind of thing community and make us stronger.” so people can share their continues when we go

experiences and support each other. back to ‘normal’ as I think it can be Volunteers with lived experience of really benefi cial.” MS have led or co-delivered all our Read about how local MS groups online sessions, and they’ve been New ways to offer support have been supporting people on absolutely brilliant.” Physiotherapist Rachel Flinn normally page 22. To fi nd out more about Craig Herbert, who co-delivered works at our Belfast Resource Centre, our services, contact our MS a webinar on anxiety, said, “The providing one-to-one physiotherapy Helpline on 0808 800 8000, email chance to ask questions and even and running Pilates classes. After [email protected] or visit provide some answers myself was lockdown, she set up her classes and mssociety.org.uk/never-alone valuable. It’s great to see people one-to-ones online.

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Keeping MS research moving Dr Emma Gray, our Assistant Director of Research, explains how we’re still committed to stopping MS despite the effects of coronavirus.

very year we invest millions paused. And researchers stepped in studies going. MS researchers in new research projects, to support the NHS. We’re also facing across the world are keeping in funding major breakthroughs a signifi cant loss to our fundraising touch and sharing ideas virtually. in the UK and bringing income and, unfortunately, that Lab workers are analysing results Escientists across the world together means our research programme and writing up fi ndings from to speed up progress. This has got us will be affected. Many planned new home. Researchers have adapted to a critical point, and we can see a research projects could be postponed clinical trials so that they can future where nobody needs to worry and we’re unable to immediately carry out follow up visits by phone about their MS getting worse. But fund the promising new work that is and participants can complete coronavirus is affecting many of the desperately needed. questionnaires by email. This means vital research projects we support researchers can still gather the vital – projects that could change what it Adapting to coronavirus data they need but participants are means to live with MS. We’ve taken the decision to focus kept safe. And we’re still planning Social distancing means many on supporting our researchers to our effi cient clinical trials platform, laboratories had to close. The complete projects they’ve already which will speed up the search for

face-to-face visits in most studies started and helping them keep new treatments. iStock Photo:

16 MS Matters Summer 2020

16-17 Stop MS_MS Matters Summer 2020_MS Matters 16 09/07/2020 09:00 NEWS

We’re also supporting the UK the search for new treatments. MS Register to run a survey to Today there are over a dozen help us better understand how treatments available for people “It’s like sunshine coronavirus affects people with with relapsing forms of MS, and MS (read more on page 8). some emerging for progressive through MS. But there are still lots of the clouds” people living with progressive MS, like Liz (right), without any options, and the treatments that do exist only work on one aspect of MS: the immune system. We Our plan to stop MS need treatments that repair We know that fi nding treatments myelin – the protective layer to slow or stop the accumulation surrounding our nerves, which of disability is what people with is damaged in MS – and protect MS want and need. Our Stop MS the nerves from damage. Appeal aims to address this by We believe we’re on the cusp identifying promising treatments of major breakthroughs. Liz Hyland is taking part in our MS- and delivering them to everyone Our ambition hasn’t changed. STAT2 clinical trial. She explains with MS as quickly as possible. By 2025 we want to be in the why research is vital despite the Since the Appeal launched, fi nal stages of testing a range pandemic. we’ve secured over £53 million of treatments for everyone I’ve had MS for 26 years but after I to support this vital work. And with MS. And – coronavirus or developed secondary progressive MS there although coronavirus has put the not – we’re committed to doing were no treatments available. That’s why I brakes on our progress, we’re still everything in our power to make was keen to take part in the MS-STAT2 trial, committed to pushing forward this happen. which is testing if a cholesterol-lowering drug called simvastatin could help people We've secured like me. I was due to have a trial check-up in £53 million April, but the lockdown meant I couldn’t travel to London. To continue on the trial, for MS research I needed to have a blood test to check for any side effects so my research nurse Sarah arranged for me to have this at my local Thanks for supporting our Stop MS Appeal GP. Fortunately, this came back clear and Research successes, many funded by the MS Society, mean my next batch of tablets were delivered by that we now have an unrivalled opportunity to develop a courier. And rather than coming in for tests, programme of effective treatments that could slow or even the team asked me about my walking ability, stop the damage caused by MS. speed and balance over the phone. But to make this a reality we need a dramatic increase in For me being on the trial is like sunshine investment in research. So, in 2015, we started fundraising through the clouds. It gives me that for our Stop MS Appeal and, late last year, we launched the hope. And even during the pandemic, it’s public phase. The response so far has been fantastic! important that researchers can still gather Thank you to everyone who’s baked, cycled, donated, this information to help fi nd treatments for walked, played our raffl e, and fundraised in imaginative ways everyone living with MS. to help us get closer to new treatments. To express interest in the MS-STAT2 trial Find out more and get involved at mssociety.org.uk/ visit mssociety.org.uk/msstat2 stop-ms-appeal

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16-17 Stop MS_MS Matters Summer 2020_MS Matters 17 09/07/2020 09:00 18-19 pubquiz_MS MattersSummer 2020_MSMatters 18 pub quiz pub Welcome our to W primary progressive MS and has been been has and MS progressive primary has Sandra, My mum, my heart. to close acause is which Society, MS the for funds YouTube and Facebook on nights raise to Mills! Scott Ambassador our by hosted quiz, pub avirtual than way better What home. at staying while together of being way fun a provide to wewanted why That’s time. atough been it’s We appreciate shielding. Scott says: “I hosted a series of quiz ofquiz aseries hosted “I says: Scott

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Round 2 - European 3. What are the colours of 5. What is the only 7. Laurence geography the Belgian fl ag? country in the world to Llewelyn 1. On which island of the A: Black, white and red use the Zloty as its offi cial -Bowen asks: British Isles are the towns B: Black, yellow and red currency? In which of Shanklin and Sandown C: Yellow, white and A: Switzerland German town or city located? orange B: Poland would you fi nd the famous A: Isle of Wight D: Purple with yellow spots C: Latvia Vitra Design Museum? B: Isle of Man D: North Macedonia A: Berlin C: Isle of Skye 4. In what city would B: Weil am Rhein D: Isle of Dogs you fi nd Saint Peter’s 6. Which of these C: Nuremberg Basilica? countries is not a D: Rothenburg 2. What is the capital of A: Madrid former member of ob der Tauber Norway? B: Paris the Soviet Union? A: Tromsø C: St Petersburg A: Lithuania B: Bergen D: Vatican City B: Belarus C: Oslo C: Finland D: Leeds D: Ukraine

the Best Actress 6. Which actor, Oscar for the fi lm famous for starring Top tips for The Reader? in TV’s Last of the hosting your own A: Emma Thompson Summer Wine, online quiz B: Kate Winslet was also the voice Round 3 - C: Olivia Coleman of Wallace in the Decide on the platform you are TV and fi lm D: Kirk Douglas Wallace and Gromit 1 going to use. We’d recommend 1. Who played James fi lms? livestreaming via YouTube. Bond in the 1967 fi lm 4. Who played A: Peter Sallis Set a time and date. Promote version of Casino Phoebe Buffay in the B: Peter Sellers your quiz to friends and family via Royale? US sitcom Friends? C: Ralph Fiennes 2 your social media accounts or email. A: Daniel Craig A: Lisa Kudrow D: Dustin Hoffman B: Roger Moore B: Christina Decide how you are going C: David Niven Applegate 8. 3 to ask for donations. We D: Timothy Dalton C: Courtney Cox Richard recommend you set up a JustGiving D: Brian Cox Hawley page, sharing the link before your 2. Where was classic asks: I quiz and asking for a suggested British sitcom Fawlty 5. Worldwide, what play Johnny Connor donation of £3 per player. Towers set? was the top box in Coronation Street. Write your questions – A: Plymouth offi ce grossing fi lm How many cobbles perhaps with a new theme B: Torquay of the 1980s? are used on the 4 each week – and double check C: Falmouth A: Back to the Future famous set? your answers. D: Beijing B: Return of the Jedi A: Over 9,000 C: ET: the B: Over 10,000 Keep it short - 45 minutes to an 3. In 2009 which Extra-Terrestrial C: Over 11,000 5 hour is about right. British actress won D: Top Gun D: A million For more tips and to download

Scott’s free DIY quiz pack, visit

1c, 2b, 3b, 4a, 5c, 6a, 7c 6a, 5c, 4a, 3b, 2b, 1c, 3: Round

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18-19 pub quiz_MS Matters Summer 2020_MS Matters 19 09/07/2020 09:02 NEWS

Treatment which can improve walking approved in Scotland

Fampridine (Fampyra) has been given the green light by the Scottish Medicines Consortium (SMC) for people with MS who have a walking disability.

ampridine helps about one Dancing at her daughter’s in three people who take it wedding and can speed up walking by Nina Campbell has lived with about 25%. It is a symptom MS for over 25 years and has Fmanagement treatment (SMT), been taking fampridine. meaning that it helps people with the “When I was fi rst told that I’d symptoms of their MS, as opposed to progressed from relapsing to disease modifying therapies (DMTs) secondary progressive MS my which control the condition itself. consultant at the time simply said, ‘there’s nothing to do, just Who can take fampridine? look after yourself’. But when It will be available to people who I moved further north I had a are scored 4-7 on the Expanded new consultant who suggested Disability Status Scale (EDSS). I try Fampyra (fampridine) and (You can read about the scale on it’s been brilliant. our website at mssociety.org.uk/ “Since starting it I’ve had about-edss) more movement in the toes It’s taken as a tablet and most of my right foot, which I hadn’t people are prescribed one tablet been able to do for years. I in the morning and one at night. If have more energy and just feel Nina and her husband Laurence your healthcare professional thinks able to do so much more. at her daughter’s wedding that it’s the right medicine for you, “It still takes a bit more time you should now be able to have the and I need to think and plan treatment on the NHS in Scotland. ahead for most activities, but I’m Scotland is the second UK nation now able to walk further for longer. to offer this treatment on the NHS “One of the most fantastic things Find out more about fampridine following its approval in Wales. was on my daughter’s wedding day, and treatments for balance We’re working to get this drug I didn’t have to use my wheelchair and walking problems at made available on the NHS to all at all. mssociety.org.uk/ people who could benefi t from it – “Even when the dancing started I balance-treatments

no matter where in the UK they live. was still standing!” photography JUMA

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21 Fampyra_MS Matters Summer 2020_MS Matters 21 09/07/2020 09:03 XXXXXXinsight

Our groups across Our groups the UK found new ways to support people at home embrace during the lockdown. We asked four group technology coordinators how they’ve helped people to stay feel less isolated. connected

“We’re reaching out in any way we can” Sheena Rollo, Group Coordinator for Dumbarton and District Group My sister, who is 65, was lockdown hit us hard. diagnosed with secondary But we got things moving progressive MS when she was again with Angela, an exercise 28. I got involved with the instructor who used to come to Dumbarton Group about 12 our drop-in facility. Concerned years ago. that people wouldn’t be moving We’re such a close-knit group, as much as they should, Angela even though our 72 members is now hosting her weekly Image: Dumbarton and Vale of Leven Reporter, are not only from Dumbarton exercise class as well as a new Newsquest Media Group but also the surrounding areas, meditation session on Zoom. including the vast and remote Although many of us are region of Argyll and Bute. We new to meditation, we’re really usually have lots of events and seeing the benefits of deep outings all year round, so the breathing and mindfulness.

22 MS Matters Summer 2020

Groups and COVID_MS Matters Summer 2020_MS Matters 22 09/07/2020 09:04 XXXXXXinsight

One session was so relaxing that Isolation is a big worry for people picking up the phone. someone fell asleep and we couldn’t living with MS at the best of times. We’ve even produced a feel-good wake her up – we were worried at This crisis has only magnified it, video using photographs from first, but her son was at home and especially for members who don’t our past events and clips of our she was ok! have access to technology. But members marching and moving to Those who join our classes on our closeness and the friendships the song, I’m Gonna Be (500 Miles) Zoom are absolutely loving it. we’ve built up over the years mean by The Proclaimers. It’s nothing slick, What’s more, we’ve decided to that we have continued reaching just for laughs, and by sharing it on continue with our meditation out to one another in any way we our group’s Facebook page, I hope sessions online, even when can – whether that’s through our it reminds us of all the wonderful lockdown is over. Messenger chat room, or by just times we’ve had together.

“Perhaps there’s room for set up on Zoom. As a group, I think we’ve adapted, learned Zoom in the future” to use new technology, stayed connected and kept our Peter Branson, Group Coordinator for West Oxfordshire Group spirits up. Some of our members have My daughter Josie was diagnosed stopped all our normal activities, even said that it’s been easier with relapsing MS about 13 years we resumed our physiotherapy to go online rather than get ago, and I’ve been the Group sessions via Zoom but quickly transport to a session as they Coordinator for eight years now. learned that we couldn’t just would have done before. It’s too Our group has 130 members, provide one class for everyone. early to say, but perhaps there’s of whom 90 are living with MS. Not wanting anyone to feel left room for Zoom in the future, We’re an active group offering a out, we decided to offer two after the lockdown. variety of weekly sessions for our different sessions each week to At the end of the day, having members, including aquatherapy, cater for people with varying a cup of tea at home is not Pilates, physiotherapy, yoga, levels of mobility. quite the same as going out to massage and podiatry. We also We now have an activity on meet people and chatting to meet up for social events such as Zoom every day, from Monday them face to face. But for now, quizzes and meals out. to Friday, including two Pilates we’ll continue with our Zoom When the COVID-19 pandemic sessions and one yoga session. sessions for as long as In our social group sessions, we they’re needed to usually start with a general Q&A keep our members to provide practical information active – both and support. But people mainly physically use these sessions to say hello and socially. and find out how everyone’s doing – with pet cats and dogs often making Want to get involved? an appearance. Find your local group At first, it was online at mssociety.org.uk/ a big challenge local-support to get people

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Groups and COVID_MS Matters Summer 2020_MS Matters 23 09/07/2020 09:04 insight

so we’re getting an insight into “People are keen to share how everyone’s getting on during the lockdown. their hopes and fears” Using WhatsApp video, we’ve replaced our weekly art class with a Janet Williamson, Group Coordinator for Newry, Mourne chit-chat every Tuesday and moved and Armagh Group our yoga class to an online session every Thursday. I was diagnosed with relapsing MS With many of our members living Until things go back to normal, about 24 years ago, and I’ve been in rural areas, staying in touch has we’re asking our members to try Group Coordinator for the last become much more important different ways of staying connected 15 years. now, especially for people’s – by posting a message, talking to mental health. others, or joining an online activity. We use our Messenger Our group is like a family and just group to share information being there for someone can be and for peer support, as such a positive thing. When one of someone is always there to our members who lives in a nursing listen and respond. People home was feeling down, we all are keen to share their hopes wanted to help cheer her up. We and fears about the future, gave her gifts so she could open one every day – for two weeks! Knowing Janet receives an award that other people were thinking of from CEO Nick Moberly (left) her really lifted her spirits. and broadcaster Joe Mahon

“Our connections have become even stronger” Ann Hodgson, Group Coordinator for Chepstow Group

I’ve had relapsing MS since 1987. I WhatsApp group chat to send started getting involved with the messages to each other and Chepstow Group almost 15 years since Easter, we’ve moved our ago. We used to meet weekly as yoga sessions to Zoom. a group for coffee and a chat, and Our Local Network Offi cer lets when we meet upup virtuallyvirtually for yoga classes. us know what’s going on across for the choir but, as you can Within two weeks of the different MS groups in Wales. imagine, it’s not the easiest thing lockdown, our coffee and chat That means we can choose to to do on Zoom! sessions were up and running be part of various other online Being online has helped us to again on Zoom. We tend to keep activities such as the popular connect with new group members our conversations FridayF afternoon from other parts of Wales. I can upbeat and, as you’re quizzes,q mindfulness happily say that the connections seeing many different and Pilates classes, we had before the lockdown have faces, it can help people and the choir. We become even stronger now. feel less isolated. have tried singing Email sian.tucker@mssociety. We’re also using our along to the piano org.uk for more information.

24 MS Matters Summer 2020

Groups and COVID_MS Matters Summer 2020_MS Matters 24 09/07/2020 09:04 Research

Let’s talk about sex hormones Beth Shorthouse-Ullah, who lives with MS, spoke to Dr Riley Bove, from the University of California San Francisco, about the role of hormones in MS.

First things fi rst – what are system. We know that the risk hormones? of developing MS is higher “Hormones are chemical for women than men. It messengers found in the has been noted that when Active nerve cells body. They help one part of puberty begins, the risk of the body communicate with developing MS increases in another, by travelling Beth women in comparison to through the bloodstream to Shorthouse-Ullah men. But although men “We know that MS pass on messages. There are are less likely to be affects three times lots of types of hormones, diagnosed with MS, the and each type plays a course of their condition is more women than men. different role in the body. often more severe. So it makes sense to For example, sex hormones We also know that look at the hormonal like oestrogen and during pregnancy, when differences between testosterone play a role in Dr Riley Bove women experience many sexual development and hormonal changes, they men and women.” reproduction, whilst gut hormones often have fewer relapses. But in the like ghrelin can stimulate fi rst three months after birth the risk myelin repair in mice. And oestrogen your appetite.” of relapses rises. exposure in both male and female We don’t fully understand what mice has been shown to reduce the Is there a link between causes these differences between effects of an MS-like condition. hormones and MS? men and women but it’s very likely For testosterone, one study has “When people talk about hormones that hormones are involved.” shown that high levels of testosterone and MS, the focus tends to be on the in male mice triggered an immune sex hormones. Research suggests Could hormones play a role in response that protected them from that there is a strong link between sex the treatment of MS? an MS-like condition. And low levels hormones, like oestrogen and “Research has shown that exposure of testosterone in female mice testosterone, and the immune to oestrogen is able to promote increased their risk of developing an

26 MS Matters Summer 2020

26-27 Hormones_MS Matters Summer 2020_MS Matters 26 09/07/2020 09:05 Research

MS-like condition. These are around the time of menopause. But with MS have just observed the promising fi ndings for the future of we also know that MS progression is correlation between hormonal treatments for MS, but what we linked to ageing. So it’s diffi cult to changes and MS symptoms, which really need to know is whether these disentangle the effects of ageing doesn’t tell us enough about what’s results apply to humans. from the effects of the menopause. actually happening in the body. We know women often report that So we need to complete What has your research their MS symptoms get worse interventional studies (where you shown? during the menopause. With actually change people’s hormone “I’ve always been interested in the support from the National MS levels and measure the effect on MS hormonal changes that occur at Society in the USA, we have done a symptoms) to understand how a different stages of women’s lives, like small pilot trial to see whether treatment targeting hormone levels puberty and pregnancy, but the area hormone replacement therapy could benefi t people with MS. I felt really needed exploring was how improves MS symptoms in Clearly, we are scratching the hormonal changes associated menopausal women with MS. We’re the surface of hormones as an with the menopause impact MS. currently analysing the results of this area of research as a whole. But these In my research group, we’ve been trial, and hope to share them later in studies will pave the way for future exploring whether rates of disability the year.” clinical trials and potential progression are different before and treatments.” after the menopause. The results What are the next steps for seem to suggest that disability hormones research? Read more about MS and hormones

Image: iStock progression speeds up a little “To date, most studies with people at mssociety.org.uk/hormones

mssociety.org.uk 27

26-27 Hormones_MS Matters Summer 2020_MS Matters 27 09/07/2020 09:05 INSIGHT

Ask the expert: Stress and anxiety

MS is unpredictable so it’s not unusual to experience stress and anxiety if you have the condition. And right now, there’s even more uncertainty in the world. Professor Rona Moss-Morris, psychologist and Stop MS Appeal Scientifi c Ambassador, answers your questions on why it happens and how to manage it.

What are stress helpless. Or we can feel anxious. especially new ones. and anxiety? We can’t always change the Stress can make you tired, upset Katie stressful things that are happening your stomach, or cause pain if you’re Lots of things can cause stress. around us. But we can sometimes really tense. So it can be hard to know It could be a major event like change how we respond to stress. which symptoms are due to MS and coronavirus, or daily hassles like traffi c which are down to stress and anxiety. jams or dealing with medication. On days when I feel MS Stress can also exaggerate These are called stressors and can symptoms are worse, my symptoms. If we are not getting mount up over time. anxiety is higher. Why is this? enough sleep, we might fi nd it We respond to stressors in Karine harder to deal with symptoms. It different ways. Our heart beats We don’t fully understand the link can be a vicious cycle. If we can fi nd faster and our blood pressure goes between stress and MS symptoms. ways to manage stress, we’re likely up. We also respond emotionally. We But it’s normal to feel anxious when to feel better. can feel angry, frustrated, upset or you’re experiencing symptoms,

28 MS Matters Summer 2020

28-29 ask the ex_MS Matters Summer 2020_MS Matters 28 09/07/2020 09:06 INSight

Do stress and anxiety suggests that they need to be cause fl are-ups in adapted to take into account the symptoms? specifi c challenges of having MS. Claire To address this, we’ve developed an online digital We know that stress makes therapy called “COMPASS: us more vulnerable to certain Navigating your long-term diseases like colds. And we know condition”. This helps people that there is a link between navigate the unique challenges of stress and how the immune living with long-term conditions. system responds to invaders. For example, many people with But there’s not much research on MS fi nd they focus on the things the link with the immune attacks Compass is an online digital therapy they need to do to manage their that happen in MS. There is some condition. But it’s important for mood evidence that stress might make to allow time for activities you enjoy relapses worse, but more research is as well. The programme can help you needed so we can understand what’s “It’s normal to fi nd ways to do that. And it can help happening in the body. feel anxious you deal with uncertainty, maintain exercise and establish a routine that Can stressful events in works for you. The programme was childhood increase your when you’re developed alongside people with MS chance of getting MS? and other long-term conditions. We Claire experiencing want to research this further so that in Researchers have found a link symptoms” the future the therapy could be more between childhood adversity and freely available in the NHS. increased risk of disease. There are some theories that if you have lots of some things that might help. Do you have any tips for stress during childhood it can change We know that exercise can help with managing work stress? our nervous system which makes you mood and mobility, as well as some Noor more disease prone. But there’s no MS symptoms. This could be intense Working with MS can be challenging. evidence that MS is caused by stress. aerobic exercise or something like It can help to pinpoint the problem. yoga – whatever works for you. Things Is it the stress of working when you Are there ways to deal like mindfulness, that help you think have MS symptoms like fatigue, with stress and anxiety about the present moment, can also or is it issues with your manager’s without medication? be helpful. expectations or other relationships Barbara It may also be possible to get support at work? Breaking down problems We know that disease modifying from psychologists. Some people fi nd into chunks can help things seem therapies are really important cognitive behavioural therapies (CBT) more manageable. for long-term health and slowing helpful. These are talking therapies down the build-up of damage. But that help you become more aware of it’s important that we consider the your thoughts and fi nd different ways Look out for our call for emotional impacts of MS as well if we of thinking and doing things. There’s questions for the next MS want to stop MS. also Acceptance and Commitment Matters on our Facebook page at MS is an unpredictable condition Therapy (ACT) which is similar to CBT facebook.com/mssociety and we’re living in uncertain times. but includes some different techniques Showing signs of stress is normal in like learning that thoughts are not Read more about stress these situations. But if the stress is necessarily facts. Although these at mssociety.org.uk/ getting in the way or makes you feel therapies are very effective at treating stress-and-anxiety

Photo: iStock Photo: anxious or depressed then there are anxiety and depression, our research

mssociety.org.uk 29

28-29 ask the ex_MS Matters Summer 2020_MS Matters 29 09/07/2020 09:06 INSIGHT

Support with fi nances and wellbeing in Manchester

Our Improving Quality of Life Sam tries out Project helps people with MS in a scooter Greater Manchester to improve their emotional wellbeing and fi nancial security.

am Liddy is one Project Officer, supported of more than me so I was able to go and 50 people who test scooters out and find have benefi ted the right one – I wouldn’t Sso far from the project, have been able to do that which is run in partnership otherwise. with Citizen’s Advice Manchester (CAM) and Did the project help funded by the National you get the funding? Lottery Community Fund. Yes. I wouldn’t have my mind and helped me which helped immensely. She talks about the impact known what was available get up to speed with my It is like a safety-net in that it has had on her life. – it would have taken me money and entitlements. respect. They’ll catch you years. Mark also helped CAM was good in because they know what Why did you get me to dispose of an old explaining it all to me, being you’re going through. in touch with the scooter which was given patient and offering further project? to a local charity. It was support, for example My MS nurse thought it too large and had been around housing. To fi nd out more, email would be good for me to passed to me from my mark.pritchard@ receive more support with grandmother, who passed Is there anything else mssociety.org.uk or my finances and benefits away recently. you’d like to share? visit mssociety.org.uk/ and to find a way to help They didn’t forget about improving-quality-life me to get outdoors. How did Citizens me but stayed in contact. Advice Manchester Having that connection Our UK-wide MS What kind of support (CAM) help you? really helped. Mark made Helpline offers a have you received? They helped me by phone, it possible for me go out, Benefi ts Advice Service I got funds to be able to with benefits and making which I couldn’t have and can let you know get a scooter. I’ve received sure I was receiving the done otherwise, because about other fi nancial the funding, but it is right income. They sorted I’m housebound. I got support services, currently on hold because out issues I had with support from someone including grants. Call of coronavirus and not Universal Credit which I was with an understanding 0808 800 8000. being well. Mark, the scared of doing. It eased and knowledge about MS,

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31 Financial wellbeing_MS Matters Summer 2020_MS Matters 31 09/07/2020 09:06 Real life stories

How volunteers helped me Three people talk about the impact our volunteers have had in their lives.

Sam from Larne in Every Tuesday I go down Northern Ireland on how to the gym and there’s a volunteers are helping professional trainer there her get back on her to personalise a workout motorbike. for me. Because of my MS, I have no feeling in my ’m very lucky with my MS. left leg, and I’ve lost most Sam on one of her Honda There’s lots of things I can strength in my right leg. Blackbirds still do. I’m not going to let This means my balance it destroy my life. When I is completely off, and you Iwas diagnosed in 2003, I said need balance and strength lovelyl l lleisurelyi l ddrivei ddown to my doctor: “But I still have to hold onto a motorbike. the Antrim coast road. I’ll too much to do.” But from these classes, have Caroline in big part to My MS hasn’t stopped me I can see the difference thank for that! from moving to China. It hasn’t already. Even if I can’t get You’re only on this stopped me from moving to on the motorbike myself, planet once. I plan to grow England. But it has stopped I’m going to get strong old disgracefully, and me riding my motorbikes. enough to hold onto my hopefully on the back of I’ve got two Honda Blackbirds husband and go for a my motorbike. in the garage and I always walk past them thinking, “I Our volunteers are superheroes wish”. But I’m determined to Our 3,500 volunteers support people through our get back on, so I’ve started local groups, respond to enquiries on our MS Helpline, going to my local MS Society raise funds and campaign for change. Volunteers exercise classes again. also play a vital role in coproducing our services, and Caroline, a volunteer, set them in making sure we provide reliable information and up and I’m so thankful she did. invest in the right research projects (see Volunteer Spotlight, page 45). We simply couldn’t do what we do without them! “From these If you’d like to fi nd out more about volunteering, contact us at [email protected] or visit classes I can see the mssociety.org.uk/volunteer-with-us difference already”

32 MS Matters Summer 2020

Real Life spread_MS Matters Summer 2020_MS Matters 32 09/07/2020 09:07 Real life stories

upset, lonely, and on our own. There Soulla, whose son Chris were so many emotional feelings. has MS, talks about the Then our MS nurse put us in touch comfort and practical with Tony, a volunteer at the MS support volunteers Society Sutton Group in London. The have given her family. group helped me to think there is s a family, we are hope. I truly believe that without the immensely proud of help of my local group, my son could Chris and the things not have achieved the confi dence he has achieved in the he has today. These angels have mostA diffi cult circumstances. Chris been there for all of us with advice, was diagnosed with MS in 2007. comfort, and loads of activities. Despite treatment, three nasty Whenever you need them, they are relapses later he there. I can just pick needs a walking up a phone if I’m Soulla (top right) with her frame and mobility stuck for anything, husband Kyriacos, son Chris scooter to get “Whenever but they also and daughter Joanna around. This is you need reach out. where the impact If that isn’t enough, from the group to buy equipment for of the MS Society them, they over the last 10 years his health and mobility. We will always comes in. We were Chris has been able be indebted to our local MS Society so lost, scared, are there” to get fi nancial help and what they have given us.

Mark explains how the support introduced herself straightaway and he received from Susannah and said, “I’m from the MS Society. If there’s “I get such a the Gwynedd and Mon group any way I can help you I will.” buzz from has changed his life. That’s why I volunteer now. I raise money, and help other people, to volunteering” hen I was diagnosed say thank you for how much MS such a buzz from volunteering. with MS, I could no Society volunteers did for me. I get It stimulates my mind, gets longer relate to myself my body moving and I get to at all. I could no longer help people. Wwork, and I had no idea what was Susannah also introduced me going on with my body. I was a mess. to boccia, the soft ball sport. But Susannah picked me up out of Before I knew it, she said do you the gutter. I don’t think I would be fancy coming on an instructor here today if it wasn’t for Susannah course? Now I teach boccia and my local MS Society group. classes for people with MS and I fi rst found the Gwynedd and other disabilities. My classes Mon Group in Wales through their keep people active and get them Pilates class at my local leisure centre. out of the house, and I’m happy When I got there, Susannah popped Mark now volunteers with Susannah with that. her head around the door. She iStock

mssociety.org.uk 33

Real Life spread_MS Matters Summer 2020_MS Matters 33 09/07/2020 09:07 ADVERTORIAL

You could WIN £3,000! Summer Raffl e Play along to support people with MS

ome together for the MS community by entering our summer raffl e. When you buy a ticket, you’ll also be in with the chance to win a fantastic prize. Prizes Don’t miss out on your opportunity to be one Cof our lucky winners. Give us a call or head online to play 1st prize 2nd prize along today. £3,000 £1,000 Why I support the summer raffl e Vicki Horton was one of our winners last year. She said: 3rd prize 4th prize “I was very pleased to win the prize of a hamper in last £250 £100 year’s Summer Raffl e. I love being part of the journey to raise funds for research into a disease which I was diagnosed £25 M&S vouchers x 20 with in 2017. I don’t think I can undertake the South Coast challenge again (see To play the raffl e visit photo) so instead, I get involved with the raffl e, raffl eentry.org.uk/mssociety and encourage family and or call 0330 002 0267 friends to play along as well! Thank you MS Society for all you do.”

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fle af £1,000 PER R TICKET eerr R 100 £1 mm 2nd2 Prize: £100£ SummerSu Raffle 00 4th Prize: ffle 3,0 er Ra £1,000 e £3,000£ m izi SummerSum Raffle2nd2n2 Prize: Prize: £250 ize:e £100 h Pr PER d £25 M&S Vouchers3,0,000 x 20 4th4t Prize: 3rd Prize: rizize:e £3,000£ £1 TICKET 1st11sst Prize:PrP £250 Return by: 28 August 2020 Draw: 4 September 2020 er Raffle ss 3rd Prize: SummerSumm Raffle mplete in BLOCK CAPITALS £25 M&S Vouchers x 20 2nd2 Prize: £1,000 1st1 Prize: £3,000 Return by: 28 August 2020 Draw: 4 September 2020 4th4 Prize: £100 Stick your address , £250 tailse: above,abo label here 3rd3 Prize: e number, s. ne: £25£ M&S Vouchers x 20 Draw: 4 September 2020 August 2 020 Return byby: 28 August 2020 Draw: 4 September 2020 e provide contact details above, ing email and phone number, can contact winners. p39 Advertorial raffle_MS Matters Summer 2020_MS Matters 34 09/07/2020 09:08 REAL LIFE

“Everything I do has to fi t into my routine” After Colin Goodman, from Belfast, was diagnosed with MS in March 2017, he experimented with dietary and exercise changes until he found a lifestyle that worked for him.

he fi rst thing I out dairy. I’ve also cut an important skill. There’s four years ago. I’m in a did was to read out fast food and alcohol. something nice about totally different place. MS up everything What has helped me eat being able to go outside is a passenger, it’s there I could about a highly plant-based diet and get your own food in the background, but it TMS. I found out a lot about is the fact that I’ve really and knowing where it’s doesn’t have any say in what I can control, which got into cooking. I’m loving come from. my life. As a Christian, my was food. Obviously taking my food! faith is also very important your medication is super I’ve started growing MS is a passenger to me. important as well. For me, my own fruit and veg Since being diagnosed, I’ve Everything I do has to that’s Tecfedira. in the back garden, like also taken up running and fi t into my routine so, to I tried something called raspberries, tomatoes, have done a half marathon anyone looking to make the Paleo diet [foods kale, spinach and and two marathons. I’ve changes, I would say do availableavailable to earearlyly peoplepeople strawberries.strawberries. I ththinkink iit’st’s continuecontinuedd runningrunnin during it gradually and make before farmifarmingng emeemerged].rged]. the lockdolockdownwn – inin off-road sure it fi ts your lifestyle. This involves eatieatingng lots locatlocationsions rratherather tthan in the You don’t want to do ofof nuts and berriesberries and paparksrks and streetsstreets – and something that’s going to cuttingcutting out dairydairy andand my ggoaloal is to run 1,000 cause stress. Everyone is anythinganything pprocessed.rocessed. I mimilesles tthishis yyear.ear. different – and you need didn’tdidn’t continuecontinue because it I feelfeel a mmillionillion ttimes to fi nd out what works wasn’twasn’t sustainablesustainable – I havehave bettebetterr than I ddidid tthree or for you. three youngyoung boboysys and it didn’t fi t well with mymy familyfamily life.life. ThinkingThinking of makingm changes? Everyone’s lifeslifestylet is their personal choice, but if you’re Plant-basedPlant-based dietdiet thinkithinkingng of makmaking any big changes, we encourage you After that,that, I decidedecidedd to sspeakpeak to youryour MS specialist fi rst. to take iitt sloslow.w. I DownloadDownload ourou Diet and Nutrition booklet at sstoppedtopped eatineatingg mssociety.ormssociety.org.uk/eating-and-drinkingg . meat aalthoughlthough I Call 0300 50050 8084 or visit mssociety.org.uk/ ststillill eat fi sh. TThenhen I publicationspublication to order a paper copy.

Sunday World Sunday moved on to cuttincuttingg

mssociety.org.uk 35

Real life - Colin Goodman_MS Matters Summer 2020_MS Matters 35 09/07/2020 09:08 Community Views

During these challenging times, it’s easy to get caught up in your thoughts and worries. With this in mind, we asked you how you’ve coped during the lockdown. Quizzes, music and video chats were among your top responses. What’s helped you cope with life in lockdown?

“I’ve been working from home. By not travelling it’s gained me an hour a day. I’ve been baking, crafting and gardening; all things I enjoy but for which I usually struggle to fi nd time and energy.” Tracey

I’ve been cycling virtual routes around the world to keep in touch “I’m fi nding this time with my disability golf family. I very diffi cult and stay home but I’m keeping my stressful but with the world as big as possible. It’s been help of my gorgeous doggy Ella I’m wonderful for my mental health surviving.” and my fi tness.

Shutterstock Katerina Aimi

36 MS Matters Summer 2020

36-37 Vox Pop_MS Matters Summer 2020_MS Matters 36 09/07/2020 09:10 Community Views

“Music, being Using social media and doing Using my MS exercise in my garden some sketching. I have had phone DVD helps to fi ll the and video call support from my local community gap of my three classes nurses as well. However, it has quiz nights been extremely diffi cult not which are not on. with my getting any fresh air! I’ve been Keeping in touch with friends.” unable to leave the house due to some other MSers neighbours not following the rules from my classes. Video Scarlet around lockdown. calls every day with my

Clive daughter. Relaxing in our infl atable Lay-z-spa. “Scott Mills’ quiz night and fi nding other Having my husband quizzes online like Marvel and Star Wars helps you here. Listening to the stretch your brain and, most importantly, have fun!” birdsong. Reading on Kerry my Kindle.

Heather Being with my family every day, whether they’re working from home (husband), doing schoolwork (teenage son) or furloughed (eldest son). It’s nice just knowing they’re there and safe. “Tidying up the Dawn house. I can now see my dining table. And video calls with I’ve discovered the Paracise Community Exercise classes, friends.” specially designed for those of us who are less mobile, or Kay-Anne just a little older, with the option of doing the exercises seated. They have broadcast live sessions on Facebook

every morning during lockdown. It gets me out of bed We’ve deferred the question we and improves my mood. asked last time to our Autumn issue. Thanks to those of you who’ve already replied! There’s Debbie another chance to tell us: What’s your best achievement “Video chatting with family and friends I haven’t while living with MS? Email us at msmatters@mssociety. been able to see for months. Doing different things org.uk or keep an eye on our around the house (decorating, clearing out) to make Facebook group, facebook. my surroundings better. Knowing I have a safe com/mssociety. We’ll post the question in the autumn. environment around me, and it won’t be forever.” Lauren

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36-37 Vox Pop_MS Matters Summer 2020_MS Matters 37 09/07/2020 09:10 COMMUNITY views

Many of you have experienced similar symptoms. Here are a few of your responses on Facebook:

Sonia Really well-written, thank you. The cog fog is why I had to give up my job, too. It’s so hard to explain!

Karen Thank you for sharing Making the invisible visible Jacqueline. I understand the cog fog diffi culties as I experience “‘But you look so well!’ If I could have had a pound every time these too. I’m lucky the issues lie I used to hear that said, the MS Society collecting bucket with me because it’s a lot harder would be overfl owing,” writes Jacqueline on our blog. for my fi ance and those closest to me to understand when it’s Outward appearances can be You get lulled into a false sense of invisible. Stay strong beautiful deceptive. Even more so now, safety and think it’s over. Then, out #mssister. If you have a down when all you see of friends of nowhere when you least expect moment/day remember it’s ok to and loved ones is the scaled it, WHAM! It hits you again. There is not be ok sometimes. down version on the Zoom or no escape. Houseparty screen. Perhaps a more common invisible I know only too well about symptom known to many with MS Charlotte the invisible, but visible to me, is having trouble with memory and Cog fog was a frustration symptoms of MS from which I thinking. “Cog fog” as it’s often called. until I realised it was MS and there suffer. Here are two of them. Again, there’s nothing to be seen. is a reason why I struggle. Hard to Trigeminal neuralgia, or It’s easy to disguise, I did for explain to others though! TriGemN, as I call it for short, is a several years before fi nally I had to sudden, severe and sharp nerve give up work. I just thought I was pain that shoots down the side getting more stupid as I struggled Read more about invisible of my face. It feels like having an with even the easiest of tasks like symptoms at mssociety.org.uk/ electric shock in the jaw, teeth shopping online or booking travel. signs-and-symptoms and gums. There is no other pain like it and when it hits, it leaves me fl oored, literally. Are you a budding blogger? It usually happens in short, share If you’d like to write for our online community, get in touch unpredictable attacks and hits with us at [email protected] my upper right jaw, lasting for Do you have a comment on something you’ve read in MS about two minutes, every three Matters or on our website? Let us know! to four hours. It occurs for up to Email [email protected] 10 days and nights at a time and Facebook fb.com/MSSociety then the attacks stop as soon as Twitter @mssocietyuk they start.

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39 Community views - Blog_MS Matters Summer 2020_MS Matters 39 09/07/2020 09:12 community views

How lockdown has opened up a virtual world From musicals to museum tours, Theresa Sullivan has been exploring what’s on offer online.

ince the outbreak started, eyes before the face mask cover is put “The Show Must Go On” channel. I’ve I’ve been using my computer on and the table moved inside. I dislike watched Joseph and the Technicolour to do things I’ve never having MRIs and always try to make a Dreamcoat and from his TV show, thought about or knew how list of jobs to do in my mind to distract the Dorothy auditions for The Wizard Sto do before. myself. However, viewing the MRI on of Oz, which is a special fi lm in mine One of my favourite fi nds is virtual the virtual tour still interested me a lot. and my daughters’ lives. I can use tours of museums, like the Science YouTube on the television too so I can Museum, where I could view the fi rst The shows are still going on watch in comfort. magnetic resonance imaging (MRI) I used to go to theatres a lot with my machine. I was interested to see inside family and especially liked going to Shopping and socialising an MRI without being put inside it. pantomimes. On YouTube, I’ve been I’ve ordered birthday cards and Usually, when I have a scan I close my enjoying Andrew Lloyd Webber’s presents so that no one misses out during lockdown, and have accessed websites for things like clothes and plants. I’ve been taught how to use Facebook and just recently learnt how to insert photos. My daughter has set up Zoom for me so I can chat to family and friends, and take part in the quizzes which seem to be popular right now! I’m sure that even after lockdown, I’ll continue to use some of these new resources. I’m learning new skills, reaching out to even more people than before and enjoying some of my older hobbies from the comfort of my own home.

Want to learn how to make the most of the internet? If your confi dence needs a boost, Age UK has a handy guide at bit.ly/AgeUKgetting-online (useful however old you are).

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41 Community views - Expaning my online world_MS Matters Summer 2020_MS Matters 41 09/07/2020 09:12 community news

Building a stronger community

n the last issue of MS Matters, we talked about the community will continue to be the main our proposed new approach to membership. way in which we decide what we do. We’d In this issue, we ask Nick Winser, Chair of the like to move away from a system where that Board of Trustees, and Emma Whitcombe, democratic right isn’t exercised by many people IExecutive Director of Engagement and Income and create an electorate which, hopefully, will be Generation, what this means for you. much larger. This electorate will continue to elect the Why are you making changes majority of the board and help us set to membership? our strategy. NW: We want to reach many more people affected by MS. We currently have a membership What differences will I notice? of about 30,000 but we estimate that MS in the EW: We’re building an exciting online space that you UK affects more than a million people when you can personalise to get information that’s tailored take account of the 130,000 people who have the to you. This will give you control of how you get condition and all their friends and family. These involved with the organisation, as well as a chance to membership changes will help us to support more connect with other people affected by MS, and your people, build a stronger community, and drive local MS Group. You’ll still get MS Matters magazine, forward our goal of providing vital support services either by post or online, three times a year. and world-leading MS research. Interestingly, during the COVID crisis, we’ve seen EW: Membership numbers are also declining that lots of people are starting to take part in online and by developing a new approach we hope it activities for the fi rst time. So, when you receive will help us reach many more people who have the magazine, we’ll let you know about some of a link to MS, and enable everyone to get the the online sessions we’re running. Whichever information they want and need from us in a way you choose to be involved, we’ll invite you way that works for them. The proposed changes to take part in the latest research and be part will mean legal responsibilities are transferred of our new electorate so you can have your say.

from members to trustees and National NICK WINSER Council chairs. Do I need to sign up again to be a member? Does this mean the Board will be less EW: If you’re an existing member we’re planning to accountable to members? transfer you into the new membership. We’ll be NW: Not at all. Trustees and National Council writing to you to explain how being involved in the chairs will remain accountable to everyone in the new model works, but you’ll continue receiving the MS community. We will still be run on democratic magazine and you’ll still be able to vote in trustee principles and we’re determined that the voice of elections. You’ll be able to opt out if you wish. EMMA WHITCOMBE

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42-43_Interview_membership_MS Matters Summer 2020_MS Matters 42 09/07/2020 09:13 community news

What about my membership fee? EW: We don’t want cost to be a barrier to anyone wanting to join us. The online space, and the links it will provide to our MS community, will be available to all. However, members make an incredibly valuable fi nancial contribution to our support services and research, so we will also be asking for donations. That means people can donate whatever they feel able to, at a time that’s right for them. We also hope that, wherever possible, anyone who is currently a member will be happy to continue their annual contribution.

Will my local MS group lose out on my membership fee? NW: Local groups are a key part of delivering vital services and support locally, and building the MS community. We are committed to providing them with equivalent funding for the first three years and will work closely with them, so they don’t lose out in the longer term.

What impact will these changes have AGM and election for people living with MS? EW: Reaching the widest community possible arrangements will give us a louder voice when we talk to the government and stand up for people In response to the COVID-19 pandemic, we’ve decided to with MS. And the more people who know move this year’s AGM to Saturday 5 December. If you’re an about us, and get involved in what we do, the MS Society member, we’ll contact you in October with formal better our services will be for everyone who notice of the meeting, the AGM booklet, and details of how to needs support. vote on resolutions and elect new trustees. See mssociety.org.uk/agm for details. What should I do if I have questions? NW: We’re going to be sharing more While trustee elections will take place as usual, we’ve decided information on the proposals with members to suspend National Council elections this year. Instead, we’ll in the coming months, including opportunities fi ll vacancies by co-opting people. Being co-opted means that to join online sessions where you can ask any following receipt of your application and a successful interview, questions you may have before we ask you to your role would be confi rmed by the existing National Council vote at the AGM. members for one year, rather than being elected by our membership for a three-year term. Further information can also be found at Find out more at mssociety.org.uk/national-councils mssociety.org.uk/membership-developments or by emailing [email protected]

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42-43_Interview_membership_MS Matters Summer 2020_MS Matters 43 09/07/2020 09:13 45 Spotlight_MS MattersSummer 2020_MSMatters45

Image: Shutterstock I living with MS with lookingliving at what and people MS researchers them. with science talk to great been It’s magazine. Matters for Research researchers of MS lots interviewed also I’ve fascinating. was It projects. ofMSresearch hundreds help to tissue cord spinal and brain uses which Bank, Tissue Society MS ofthe panel review the join to was way. the along MS with people living some incredible good friends with made I’ve And intoresearch MS. new about think andbackground myscience use to an opportunity me gives Network Research Society’s MS of the useful. dosomething to want I here. sitting I’m just and training Recently I joined a group of agroup Ijoined Recently My fi project rst member avolunteer Being is ridiculous, I’ve got all this this all got I’ve ridiculous, is this Ithought, ofMS. because myjob Ilost unfortunately, but ascientist be to used Research Network Volunteer spotlight: Lyndsey Shellard Volunteer interest, go for it! for go interest, your sparks Ifsomething exercise. and diet on projects also there’s alab, in place takes research all Not MS. with of living experience your is contribute can you thing important most The Network. symptoms MS and drugs other with howinteractions and effects, side potential its taken, is a drug ofhow impact the on comment to MS with ofliving experience mypersonal Iused platform. trials clinical new Society’s MS the treatments should be trialled in org.uk/research-network at Network Research the about more out Find VOLUNTEER SPOTLIGHT VOLUNTEER join the Research join the Research to background ascientifi have to c life. real in it take actually will people if consider to important it’s but paper, on good look might A treatment MS. with someone of life daily the affect might COMMUNITY News COMMUNITY News You have don’t mssociety. I joined thechoir. council member, ScotlandMS Society Davies,Cliff online viewers. of for thousands Lean onMeby BillWithers together to thesong perform in33community countries came 140 people from theMS This World MSDay (30 May), at worldmsday.org/tune-in-for-ms the future. involved in something similar in be I’d to love it. around abuzz was there and boost mental and physical areal give Singing can Zealand, and Egypt. Brazil New like places from people of, joining Pops style! –Top recording ofthe the with along perform to page same the on all we were make to sure rehearsals performance recording. fi the for compiled be to them nal recorded parts, our with happy we were once and, athome werehearsed Then arrangement. song the through we went De-Lisser, Mark where director choral practise. and with familiar get to us for parts Tune in for MS the scenes Behind Watch the performance performance the Watch part be to thing afantastic was really It for again together wecame Later acclaimed with werehearsed First, We were sent audio fi audio We sent were different with les performance. ausual from different quite was and involved everyone for of organisation t took plenty mssociety.org.uk mssociety.org.uk rs 09/07/2020 09:14 45 45 COMMUNITY News VOLUNTEERCOMMUNITY SPOTLIGHT NewsNews

Getting to know you… We interviewed MS NursNursee Razia Khan who joined us in May as a member ooff the MS Helpline team.

WhyWhy did you take on this role? I’ve been working as an MS nurse foforr the past nine years and I took on ththee role as I was keen to work for an ororganisationganisation that has a passion for susupportingpportingpporting ppeoplepeoeopleewithMSTheM wiwithth MMS.S. TThehe MMSS SoSocietyciety has always been on my listlist What's the best advice you've of places to work due to the supposupportrt ever been given? dayday would involve being able to givegive ththeyey provide and awareness thetheyy The best advice came from my peoplepeople living with MS the supportsupport raraiseise of the conditioncondition.. dadadd who always encouraged me to theythey need. I would then end the lelearnarn as manymany skills as I could. As dayday with some gardening and bakebake What's your an example, before I got my fi rst DanishD i h pastriespastries to enjoyenjoy aafterfter dinner.dinner. greatest achievement? car, he taught me how to change a I love reading a book. Becoming a nurse. I went into tyre. Many of the skills I’ve learned nursing because of a life-changing due to his advice have been useful If you could have a superpower experience. In 2000, a family throughout my life. what would it be? member was diagnosed with Sometimes there’s not enough hours a long-term condition and the Describe your perfect day in the day to do everything I want to support of a specialist nurse was I am an early riser and I’d love to do. Being able to time travel would be invaluable. One day, we went to see start my day by running. A perfect my superpower! the consultant, who told us the long wait to see a specialist nurse was because there was a shortage of nurses. I went home and decided How can our MS nurses help? that I wanted to become a nurse and Our MS nurses are available on the MS Helpline to give you medical support people. Within a few weeks information on things like treatment options, side-effects of medication, of making the decision, I had signed and managing symptoms. They can give you information, support and up for an access course. I completed talk to you about how to get help (but they can't give advice about your my nurse training at the University of specifi c condition). You can call the MS Helpline on 0808 800 8000. Sheffi eld.

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Getting to know you_MS Matters Summer 2020_MS Matters 47 09/07/2020 10:09 COMMUNITYCOMMUNITY newnewss

We’ll be there for everyone with an MS story After listening to your unique MS stories, we’ve developed our new strategy and three long-term goals to support everyone in the UK who is living with MS, as well as their carers, family and friends.

Keith’s story No one tells you what to expect when your partner People living well with MS gets diagnosed with MS. It was a shock for me We want to make sure people with when my wife Shona got her diagnosis. I didn’t MS get the services, treatments and really know what MS was. support they need. We’ll continue Shona has good days and bad days. She’s taken to expand our range of services, to ill health retirement fromom herher jobjob asas a busbuus driver.drd ivverer. help people understandu their rights, We have two dogs, andd we useduseed toto walkwalk forfor milesmim lles managemanageg their condition and do the and miles but now Shonaona can onlyononnlyly walkwalalk so far.far. thingsthings in llifeife tthat are important to There’s a local shop twoo mminutesinutu ees upup thethhe them.them. We’llWe’ll giveg carers the best road and she fi nds it diffiffi cultcult to carrycaarry qualityquality iinformationnform to help them back a few pints of milk.k. understandunderstand MMS and their rights and She will forget things,, thenthen she’llshhe’ll we’ll keepkeep developingdev the support repeat things and I wonderndder toto myself:mmyyses lf: is we offer ttoo helphe everyone’s health this part of MS? That canan cacauseusu e and welwellbeing.lbein arguments and disagreements.eeemem nts.s I try not to think it affectscts usuus,s, but I think it does. No one explains to thehee partner what MS is, andd whatwwhat help is out there. How dodo youyou balance work and the otheotherr side of life with your partner?artner? I feel like carers are putt bacbackk on the burner and left to ggetett oonn wiwithth it themselves.

48 MS Matters Summer 2020

48-49 strategy a_MS Matters Summer 2020_MS Matters 48 09/07/2020 09:15 COMMUNITY news

Suki’s story Connected communities,ties, powerful voices When my fatigue levels are really high it’s easier to say I’m tired as people just don’t get it. Other symptoms I get MS is different for everyonee anandd many include numbness and tingling, weakness in my limbs symptoms are invisible. Peopleople llivingiving witwithh and pain. Because it’s invisible it’s very hard to expressss MS often face barriers and challengeschallenges and explain to people. in everyeverydayd life. We’ll raise awarenessawareness I had an opportunity to do a talk about MS in front ofof and increaseincr public and politicalolitical about 100 ladies at my local temple. They listened in undersunderstandingt of the realities of MS. We disbelief, but then I explained the invisibility of it. Peopleple wantwant tot support MS communities to asked questions and I felt I’d reached out. In societyy bebecomec movements for change and we need to reduce ignorance and raise awareness. wwe’lle help people living with MS to It’s important to me that I help to do that. dedevelop the skills and confi dence Gradually over time I’ve become more isolated. to speak up on issues they care I don’t know if that’s what other people have aabout. We don’t want anyone done to me, or if I’ve made the conscious ttoo feel alone, overwhelmed or decision to not be included because I need to mmisunderstood. We’ll increase preserve what energies I’ve got left. ththe ways people can share When I got diagnosed I thought I’m going to eexperiences,x tackle common issues, fi ght this like a lioness. And it is your fi ght on ffosteros friendships, build confi dence your own because even the closest people to you anand reduce isolation. don’t understand.

Amelia’s story If there was a treatment that could stop friends. Everything’s changed. I haven’t been onn progression, I’d be so happy I would cry. It would a night out for over a year, and I’ve unfortunatelyly be life changing. had to stop working. I was diagnosed with MS when I was 19. I was I’m 25 and my life is completely differentffeerent toto really upset about it at the time. I knew something how my friends live. On a good day I cancann gogo forfor was wrong with me, but I didn’t expect it to be a a short walk to the shop. But even thenheen I gegett lifelong condition like MS. It made me feel strange sensory overload and feel like I needd to escapeescape and I didn’t know how to react at fi rst. and go into my bedroom. MS has affected my life in lots of ways. I used to MS is unpredictable, so you have too getget on work full time. I used to go out all the time with my with your life as much as you can.

Effective treatments and preventing MS For people with MS, not knowing how their MS will change over time is a huge challenge. We’ll be prioritising our work with international partners to improve our understanding of how and why MS gets worse. We believe we can slow, stop or reverse the effects of MS, for everyone. And to get there, we’re funding a fi rst-of-its-kind clinical trials platform to develop treatments up to three timeses faster than we do now.

Find out more at mssociety.org.uk/strategy

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48-49 strategy a_MS Matters Summer 2020_MS Matters 49 09/07/2020 09:15 Get involved

Enjoy a virtual Cake Break! The Hairy Bikers and Kadeena Cox are encouraging Cake Break in June by making a baking tips video with Dave. This includes people across the country to host a virtual Cake ideas for making a cake without Break to raise funds for people affected by MS. fl our – a popular internet search during the lockdown. e’ve teamed up with grown it’s helped an awful lot of Whether you’re lucky enough to get the celebrity chefs and people with this unpredictable your hands on some fl our, or plan to Paralympian Kadeena condition and is making incredible showcase some ready-made treats, to get friends and strides towards stopping MS. We raising any kind of dough could make Wfamily together online to enjoy a Cake simply cannot take our eye off the ball a big difference. Break – whether via Zoom, Teams because of the pandemic, and hosting or House Party – throughout the a virtual Cake Break will help keep the Get competitive with presentation summer months. momentum going.” Dave said: “As most people won’t be Dave Myers, whose mum lived Kadeena, an MS Society able to taste each other’s bakes this with MS for over 30 years, is a proud Ambassador, became year, now is the perfect time to get supporter of the MS Society’s Cake known for her baking competitive and up the ante in your Break. He said: “My mother lived with skills as well as cake presentation! Si [Simon King] MS from when I was a boy until she her sporting and I fi nd covering cakes with died, and the MS Society was always a achievements icing sugar is a great way to hide great support to us.” after taking part imperfections without anybody in The Great knowing!” Keep up the momentum British Bake Off. Kadeena said: “Don’t forget to He added: “As the MS Society has She helped launch sign up for a virtual Cake Break and get together with your family and friends online, just like Dave and I have. There’s a fundraising pack with recipes and everything else you need for hosting a Cake Break during these times. Enjoy your baking!”

Register at cakebreak.org.uk and share your virtual Cake Breaks using #CakeBreak2020

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51 Cake bake_MS Matters Summer 2020_MS Matters 51 09/07/2020 09:16 get involved Fundraising at home During the lockdown, many of you came up with imaginative ways to carry on fundraising. Here are just a few.

Sweet success For the challenge, Charlie and Lily spent 12 hours making their When Charlie Back found out about cupcakes. They used social media to the 2.6 Challenge to create her own tell neighbours, friends and family fundraiser at home, she decided to and organised contact-free deliveries give it a go – alongside housemate Lily across Bristol. O’Dowd. “Everyone was so sweet – we still can’t Charlie said: “We both love baking but believe we raised £965! Fundraising instead of baking 26 cupcakes for the during lockdown can be tricky so make 2.6 Challenge, we thought, why not 206? sure you have fun with it.” They’re small, cute and easy to give out. And everyone loves a cupcake!”

A marathon efforteffort On Sunday 26 April, our amazing MS Superstar Pete was meant to be running the London Marathon. Instead, he took on the 2.6 Challenge. He ran 26.2 miles in 26 consecutive hours outside on his treadmill, starting at 12pm on the Saturday and running through the night. He fi nally fi nished at 1pm the next day. Pete’s family, friends and neighbours cheered him on and brought him cake to keep him going. Pete chose to fundraise for us because his wife, Emma, has lived with MS for over 16 years. Pete says Emma is his inspiration to run. Although he couldn’t run the marathon on 26 April, he wanted to do something else to mark the day. Pete raised a fantastic £3,700, which brings his London Marathon total to almost £10,000 – incredible! Thank you so much, Pete.

52-53 Funraising_MS Matters Summer 2020_MS Matters 52 09/07/2020 09:16 get involved

Now that’s what I call fundraising A fundraising gig in the Highlands wasn’t muted by the coronavirus pandemic as organisers moved their mini-festival online, raising £4,564 in the process. The third annual charity gig, organised by Jack McPhee, was scheduled to take place at a local hotel. But with the support of 12 other artists people from the area were instead entertained virtually. Jack said: “I am just blown away by everyone’s generosity. We initially hoped to raise around £500 and could not believe the total as it crept up and up throughout the day. A massive thank you to everyone involved.”

Garden challenges raise £2,100 For most people, to have one fundraising challenge cancelled is hugely disappointing. But Angharad Lloyd had four – three 10K runs and a 25K coastal walk that were scheduled to take place between March and May this year. Angharad, who was diagnosed with MS in 2018, said: “I was gutted when I knew none of these events that I’ve been training for were going ahead. But I didn’t want to give up on the Tigers, habitats and the people who’ve supported me.” environment by John Conneely With a spin bike, second-hand Laura’s lockdown gallery means you treadmill and some Zumba moves, Laura Thorne from Brighton decided can capture Angharad completed all four challenges to curate a virtual lockdown gallery your creativity in her garden for our Stop MS Appeal, while raising funds. She asked friends through any plus an extra 10K run to support and family to submit photos of their activity. It our work in Wales. Her fantastic creative activities for a small entry fee. doesn’t have achievements raised over £2,100. Laura, who is a Stop MS Champion, to be drawing says: “The idea for the gallery came or painting from me and my mum thinking about – it could be “I knew none how we could do something together gardening or while we were apart.” baking. It’s of these events By the end of May, Laura had raised about thinking aboutbout that I’ve been £330. She has kept the gallery open what you can do and taking your time” for submissions from the wider To view the gallery and submit your training for MS community. creative work visit justgiving.com/ were going “The brief is quite open, which fundraising/lauralemontree ahead but I For more ideas on how to fundraise at home, visit mssociety.org.uk/ didn’t want to fundraising-at-home. You can also contact your local Area Fundraising give up” Manager for more support at [email protected]

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52-53 Funraising_MS Matters Summer 2020_MS Matters 53 09/07/2020 09:16 get involved

Lily walks 100 miles to stop MS Inspired by her dad, Lily raised more than £2,500 for MS research

Something positive “Living with my dad’s illness was it – getting up every morning with a a huge challenge for me and our real sense of purpose. I know her dad family. My dad never gave up on would be so proud of her. himself, throughout his illness he “I would very much like to think that accomplished many things, including for other people who are diagnosed a skydive. I was incredibly proud with MS, one day there will a cure. of my dad and so I wanted to do And when Lily looks back on this, something positive in his memory. she’ll be able to think: ‘Wow, I did that “At the start, I thought I was going for my dad.’” to struggle to keep it up every day. But a few days in, I started to realise that I could do it. Sign up for My MS Walk “When my dad was alive, I used My MS Walk is a great way to ily Atkinson, aged 14, signed to go along with him and do get active while raising money up for My MS Walk in memory supermarket collections. I think that for life-changing MS research. of her dad, Simon. She because I’ve had all the support It doesn’t matter whether you walked 10 miles a day for around me, it’s made me realise that walk up and down the stairs, roll L10 consecutive days in May, raising I’m doing this for my dad and I’m around your garden, or take a £2,553 for our Stop MS Appeal. Lily’s doing it in his memory. It has really socially-distanced stroll in your socially-distanced walks took place helped me come to terms with what local area. Ask your friends around her home in Looe and along has happened.” and family to sponsor you and Cornwall’s coastal path. use a fi tness app like Strava to Lily said, “On 10 January 2020 A sense of purpose share your progress and view my dad very sadly passed away Lily’s mum Melanie said, “Lily your and others’ achievements from pneumonia after battling with came up with this completely on our website. Find out more secondary progressive MS for nearly independently. She took the at mymswalk.mssociety.org.uk 22 years.” challenge on and really enjoyed

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MS Walk_MS Matters Summer 2020_MS Matters 55 09/07/2020 09:17 lifestyle

Activity corner Keeping cool Each issue, we feature a tip on staying active with MS. This time, we’re talking about keeping cool while exercising. Many people with MS are sensitive to heat. Some people adjust the exercise they choose, while others fi nd effective ways to stay cool and keep effects to a minimum. Here are some practical things you can try if you are heat A gardener for life sensitive: Break up exercise sessions into Sky Sports Golf commentator and MS Society smaller sections, with regular Ambassador Tony Johnstone talks about how breaks Drinking ice drinks, wearing a gardening helps him relax. “cooling vest” and taking a cool bath before exercising might s a kid living in especially after being diagnosed with help you to exercise for longer Zimbabwe, I never MS. I was fortunate enough to be Keep the exercise space understood my able to continue enjoying my garden, well-ventilated. A fan might help. mother’s passion for although I’m not able to expend as gardening.A My only interest in her much energy in it as before. Be careful if you apply ice or fl owers was to see if I could shoot Yes, the physical effort has cold packs directly to the skin, or the heads off her dahlias with my sometimes made me ask if I’m a when using cooling garments or air-rifl e! Sorry mum. little crazy for being obsessed with cold water to cool down. While waiting for furniture to arrive the pastime. But when I look out the MS can cause changes in our own fi rst home, I thought the window or sit outside on a summer’s to the way you experience garden could do with some tidying. day, I know the effort and satisfaction temperature. It can distort the So I went to the local hardware store are worth it. feeling that would normally tell to buy the basics like a spade, rake There’s something about the you when something is too hot and some hand tools. vibrancy and fragrances of a garden or too cold – so take care not Well, I’ve never really understood and the perfect beauty of each to damage the skin. Your GP, what happened then. But after 15 fl ower that somehow makes the physiotherapist, occupational minutes of getting down and dirty I struggles of life much easier to therapist or MS nurse can help knew I was hooked and that I’d be a cope with. make sure cooling techniques gardener for life! My life would have been much you try are not harmful. When I’m in my garden, I’m totally poorer if I couldn’t say those three focused on the moment. It’s hard to words…“I’m a gardener!” For more on the effects of fi nd another relaxing activity which temperature on MS visit: can clear my mind so completely. Read more gardening stories (inside mssociety.org.uk/hot-and-cold My love of gardening has always and out!) at mssociety.org.uk/ been a great comfort to me – lockdown-gardening

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57 Lifestyle Activity_MS Matters Summer 2020_MS Matters 57 09/07/2020 09:17 creative corner

“Writing makes me feel free”

After taking ill-health retirement from her job as a nurse, Samantha Henthorn didn’t know how to fi ll the gap in her life. Then she found a creative writing course at her local library. Four years on, she’s published seven books and discovered a new identity.

fter losing my job, I Now that’s turned into thought I’d be brave and a series of four books try to get some of my – Curmudgeon Avenue. confi dence back. The They’re comedy dramas writingA course was just two hours a about a fi ctional street in Manchester, with a fabulous narrator I found week, so I went for it. Fortunately, the narrated by a very critical house. through Amazon. teacher was really encouraging. Some of the reviewers have said it’s And I’m part-way through a One of the stories I wrote was made them laugh out loud. I’ve also part-time Open University course in sparked by a man who had a row published a collection of short stories, creative writing. When I started I was with me for parking in a disabled a novella and a historical novel. worried that people would say if you space, saying I wasn’t old enough Given that my MS means I can’t can do that, then why aren’t you still to need it. I thought “what an old really do deadlines, I thought I’d working? But it’s totally different. You curmudgeon” and wrote a story self-publish so I can just write what I can do it from home, I don’t need to about people who are always want. I promote my books online and stand up and there’s loads of time to moaning about other people. have just published my fi rst audiobook do the essays. I sound dead busy but I’m not really. There’s loads of tricks I’ve learned to do things quickly. Brain fog can be a problem for me, but I’ve found ways to cope, like writing down notes. I stick to a routine that helps me manage my MS and my fatigue. I get up, do physio, sort out the pets, potter about and then write for half an hour. With writing, I can take my time, pace myself and it doesn’t matter whether I do it or not – I’m free and it’s fun! I get a big sense of achievement from it and it’s boosted my confi dence.

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