Open Door Quarterly newsletter of the MS Trust
May 2019
Cycling for my sister Our supporter Kenny Smith tells us about his epic 50-day cycling challenge Picture credit: Chris Booth
Also in this issue Jen's story: The reality of life as a carer
MS and the menopause: What you need to know
Ask the expert: Managing relapses
Staying active: Pilates exercises
Welcome to the May issue of Open Door I'd like to begin by saying a huge well done and thank you to our amazing London Marathon team. I hope your legs are just about recovered now and you're basking in the glow of your wonderful achievement. The money you've raised will make such a difference to people with MS and we're truly grateful for your support. If running isn't for you, there are plenty of other ways to get involved and support our work (read more on pages 20 and 21). Talking of incredible feats, Kenny Smith's 50-day cycle ride is kicking off next month. I'll be joining Kenny for part of the route, and am excited to get back in
the saddle to support him on this epic ride. Read our interview with Kenny on page 12 to find out more about the inspiration behind it. Elsewhere in this issue, MS nurse Miranda Olding answers your questions on relapses; our If you’d like Information Team has the lowdown to donate £1 to on MS and the menopause; and we cover the costs of Open recommend some Pilates exercises for Door, please text OPEN25 you to try at home. to 70201 As ever, if you have any feedback or suggestions for future content, (Fundraising, payments and donations will be processed and administered by the National please do get in touch at Funding Scheme (Charity No: 1149800), opendoor@mstrust.org.uk. operating as DONATE. Texts will be charged at your standard network rate. David Martin, Chief Executive, MS For Terms & Conditions, see Trust www.easydonate.org)
How we’ve been working hard for people with MS since our last issue Promoting an active lifestyle Our Move it for MS MS Awareness Week campaign was all about encouraging people with MS to introduce a little activity - big or small - into their daily routine, and it was fantastic to see so many of you getting involved in all sorts of different ways. But don’t let it stop there. Keep the momentum going into the summer months, doing it at your level, at your own pace, doing it YOUR way. You can find lots of information on staying active with MS on our website, including our new Pilates videos (more info on page 14) - go to mstrust.org.uk/ exercise.
Updating you on the latest MS research Every month we send out a Research Update, focusing on the latest research going on in the world of MS and how it might affect you. These updates cover a whole range of topics, from abdominal massage and how it could ease MS bowel symptoms to cocoa and whether it could potentially help MS fatigue. We try to ensure each piece of research we highlight is high-quality, innovative and will make a difference to you now, or in the future. It’s also presented in an easy-tounderstand way – no jargon! If you’d like to sign up to our updates, see mstrust.org.uk/keepintouch. Multiple Sclerosis Trust, Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 E info@mstrust.org.uk W mstrust.org.uk Registered charity no. 1088353 2
Open Door May 2019 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk
of your questions
What’s inside? 4
News MS nurses cut waiting times, free bus travel for people with MS in Scotland and the latest news on ocrelizumab.
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Research update Pregnancy guidelines for MS, factors affecting DMD prescribing and how families manage MS.
Raising awareness of MS Raising awareness of MS is so important, because it’s a condition that can often be misunderstood. We’re dedicated to doing this all year round, but MS Awareness Week, which fell at the end of April, is always a chance to get even more people spreading the word about MS and the work of the MS Trust. Throughout the week we shared videos, facts and information on all aspects of life with MS, and we’d like to say a big thank you to everyone who did the same. Together, our voice is louder, so let’s all pledge to speak up about MS.
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Ahead of Carers' Week in June, Jen shares her experiences of caring for a loved one with MS.
Staying connected The author of The Wibbly Dinosaur blog tells us how blogging has helped her deal with her diagnosis.
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Helping you explain MS to your children
Jen's story
Cycling for my sister Our supporter Kenny on the inspiration behind his epic 50-day cycling challenge.
Discussing MS with your children can seem daunting. Our ‘Talking with your kids about MS’ book, which has recently been updated, looks at the concerns parents may have, some of the things children may want to know and what other parents’ experiences have been. You can order or download a free copy in our shop at mstrust.org.uk/shop.
14 Staying active
Neuro-physio Joanne Pritchard has three Pilates exercises for you to try at home.
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MS and the menopause Gemma from our Information Team explains how the menopause could affect women with MS.
Supporting even more people with advanced MS We are thrilled to announce that the next areas to benefit from our Advanced MS Champion Programme will be Swansea and Cumbria. We hope to have both Champions in place by the summer, and we know this will make a big difference to people in these areas living with the multiple, complex and debilitating symptoms that characterise advanced MS. Find out more about the programme at mstrust.org.uk/ams.
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Ask the expert: MS relapses MS specialist nurse Miranda Olding answers your questions on relapses.
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Get involved Inspiration for your garden party, Volunteers' Week, and why you should lace up those trainers for the Asics London 10K.
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15 minutes with Evangeline Wassmer The paediatric neurologist tells us about the new specialist centres providing support and treatment for young people with MS.
Open Door May 2019 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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Affected by any of these news stories? Call our Enquiry Service: 0800 032 38 39 Keep up to date with the latest MS news by signing up for our regular email round-up mstrust.org.uk/keepintouch
News MS Trust-funded nurses reduce waiting times
Leicester MS nurse Jon Maisey is pictured right Back in 2017, we started the pilot programme for our pioneering Specialist Nurse Programme, which funds new MS specialist nurses in the areas across the UK that need them most. With the help of our amazing supporters we were able to fund additional MS nurses in Leicester, Bradford and Lanarkshire. The programme enabled us to provide each site with 15 months of funding towards the cost of the new nurse, along with ongoing support and mentorship. After 15 months, the NHS takes over funding for the posts, but we continue to support the MS nurses in their training and development, as we do for every single MS nurse in the UK. All of our pilot sites have now completed the programme. We are thrilled to report that as a result of the additional nurses, there has been a whole range of
measurable benefits brought to people with MS in those areas. For example, at Leicester the team have been able to offer more nurse consultations to people with MS and reduce the waiting time for an MS appointment from seven months to between one to four weeks. Megan Roberts, Health Professionals Programme Manager at the MS Trust, commented: "Knowing you can contact your MS Nurse whenever you need to makes such a difference and to reduce the waiting time by so much is a fantastic achievement. "We are so proud of the work that all the Specialist Nurse Programme teams have done and the difference they are making for people living with MS." We know that the programme’s legacy will continue at Leicester, Bradford and Lanarkshire beyond the funding period,
with the teams fully committed to evolving the service further and delivering the best possible care and support for people living with MS today. This is just the start. The next round of the programme has seen us fund new MS nurses in Lothian, South Tees, Hull and North Lincolnshire and Goole, and Coventry, and we will continue to bring more nurses to areas across the UK throughout Find out more at 2019, working mstrust.org.uk/ towards specialist-nurseour goal programme. of ensuring nobody has to manage MS alone.
Ocrelizumab for PPMS – we continue the fight As we reported in the November 2018 issue of Open Door, NICE announced that it would not be recommending ocrelizumab as an NHS treatment for early, inflammatory primary progressive MS (PPMS). This decision was met with anger and dismay from people with MS and MS charities. However, at the eleventh hour, NICE said that they were pausing the publication of the final decision, to allow time for further discussions to take place between NICE, drug manufacturer Roche and NHS England. It is critical that this decision is
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overturned as soon as possible. Along with the MS Society, Shift MS, and a number of leading neurologists, we have signed a letter, published in The Telegraph, which calls on NICE, NHS England and Roche to make ocrelizumab available for people with PPMS. The good news is that NICE, NHS England and Roche are continuing their talks to find a way to make ocrelizumab available on the NHS for people with early, inflammatory PPMS. We understand that these talks are progressing very positively and a decision should be reached imminently.
Open Door May 2019 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk
There are currently no approved treatments for PPMS and people with this form of MS experience disability more rapidly than those with other types. Clinical trials have shown that ocrelizumab can slow the worsening of disability in early, inflammatory PPMS, with the potential to delay the need for a wheelchair by seven years. We continue to make the case for a treatment which can allow people to continue working and remain independent for longer. As soon as we have any further news, we will let you know - stay up to date with all the news at mstrust.org.uk/news.
Gabapentin and pregabalin become controlled drugs
Gabapentin and pregabalin are drugs used to treat a range of symptoms caused by MS, such as nerve pain, spasticity and spasms. Following concerns about the drugs being misused, on 1 April the law changed so that it is now illegal to possess gabapentin or pregabalin without a prescription and to supply or to sell them to others. What does this mean for me? Doctors will still be allowed to prescribe gabapentin and pregabalin, however there are a number of rules that you, your doctor and your pharmacist will need to follow from 1 April 2019. • Doctors will only be able to provide up to 30 days’ supply of gabapentin or pregabalin on one prescription. • You will need to request a repeat prescription each month from your GP practice. • Your GP practice may no longer be able to send your prescription electronically to the pharmacy. This means that you or your representative will need to visit the GP practice each month to collect your prescription and take it to the pharmacy. • If your GP practice uses the electronic prescription service for controlled drugs, your prescription will be sent to the pharmacy electronically. (This system has not yet been rolled out in all GP practices so it may be useful to contact your GP practice and check whether they have this system in place.) • You, or your representative, must collect your medicine from the pharmacy within 28 days of the date on the prescription. • You, or your representative, will need to sign and show proof of your identity when you collect your medicine from the pharmacy. NHS England has published a patient leaflet explaining these changes. It’s available online here: england.nhs.uk/publication/ gabapentin-or-pregabalin-patient-leaflet. Find out more If you’re unsure how to get your next prescription of about the treatments gabapentin or pregabalin, get in touch with your GP for MS at practice.
Free bus travel for people with MS in Scotland Transport Scotland has amended its criteria for people with MS applying for free bus travel, following an intervention by the MS Trust. Previously when applying for a National Entitlement Card, which enables bearers to free bus travel across Scotland, people with MS were told their application must be supported by a letter from a consultant neurologist. This raised a number of difficulties, as some people with MS do not regularly see a neurologist, and on top of that, many neurologists don’t have the resource to write individual letters for each patient. Thanks to our efforts, which were prompted by Niall MacDougall, consultant neurologist at NHS Lanarkshire, this rule has now been changed. Those wishing to apply can now do so with a letter from a specialist medical professional, including an MS nurse, and not just from their neurologist. Linden Muirhead, Director of Information and Engagement at the MS Trust, commented: "We very much welcome this decision from Transport Scotland. Not everyone with MS sees a consultant neurologist – certainly not on a regular basis – so many people with MS in Scotland have been missing out on the free bus travel to which they are entitled. We hope that the new arrangements will open up the scheme to many more." Information on driving and using public transport if you have MS, can be found here: mstrust.org.uk/life-ms/ home-and-travel.
mstrust.org.uk/aboutms/ms-treatments
Open Door May 2019 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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NE W S IN P ICT URES
Putting in the Miles Our Miles for MS superstars take on their distance challenges this month, and we’d like to wish them all the best of luck. It has been fantastic to hear about all the different ways you are taking on your miles to raise money for the MS Trust throughout May: cycling, walking, swimming and more! Watch this space to find out how many miles they cover in total. You can find out more about Miles for MS at mstrust.org.uk/miles.
Going for gold We had the privilege of chatting to Paralympic swimmer Stephanie Millward back in March and what an inspiring lady she is! Stephanie was diagnosed with MS aged just 18, but she was determined to not let it stop her following her dreams. You can watch our interview with Stephanie on the MS Trust YouTube channel at youtube.com/mstrust.
Well done to Team MS Trust Challenges don’t get much bigger than the London Marathon and we’d like to say a massive thank you and well done to our team of runners (including Ollie, pictured) who took on this epic race last month. Your enthusiasm, dedication and passion inspired everyone here at the MS Trust and the money you have raised will make such a difference to people living with MS today.
Mission completed Congratulations to everyone who recently completed Mission 100. It was brilliant to see so many of you getting involved, raising your £100 in all sorts of weird and wonderful ways, from bake sales to head shaves, busking to beard growing! Every £100 you’ve raised means we can make our Making Sense of MS booklet available to the 100 people who are diagnosed with MS every week. Mission impossible? Mission POSSIBLE more like!
MS necklace spreads some sparkle Back in November, we shared the news that our supporter Kimberley Carey had designed a necklace to raise money for the MS Trust. The necklace has been a huge hit, raising nearly £3,000 and selling in several countries. "It’s an amazing feeling knowing that across the world people are wearing the same necklaces and no matter how far apart we are, we are a community showing our strength against MS, it gives you a feeling of togetherness, that we are not alone,” says Kimberley. Get your MS necklace at: steff.co.uk.
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Open Door May 2019 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk
Keep up to date with the latest MS research by signing up for our email mstrust.org.uk/keepintouch
Research update
New UK guidelines for pregnancy in multiple sclerosis MS is usually diagnosed between the ages of 20-40, the age at which many people will be thinking of starting or adding to their family, so getting advice on family planning, pregnancy and childbirth is really important. As there is limited evidence to guide these conversations, the MS Trust and a group of experienced health professionals have developed guidelines to support discussions between health professionals and people with MS. Authors Dobson R, Dassan P, Roberts M, et al. Title UK consensus on pregnancy in multiple sclerosis: 'Association of British Neurologists' guidelines. Journal Practical Neurology 2019;19 (2): 106-114 Read the summary tinyurl.com/y48o8zkv
The study A working group made up of MS nurses, neurologists, obstetricians and midwives met to review evidence from published peer-reviewed research, drug-specific pregnancy registers and clinical experience. These discussions were summarised as a set of statements which members of the working group and two people with MS were asked to score according to whether they strongly agreed, agreed, were neutral, disagreed or strongly disagreed. Statements were revised and circulated to the working group for a second round of scoring. Consensus was judged to have been reached if 80% of the group scored that they strongly agreed or agreed with a statement. Finally, the statements were reviewed by the Association of British Neurologists and their feedback incorporated into the published guidelines.
The results The guidelines make recommendations covering contraception, conception, managing MS during pregnancy, delivery and anaesthetic options, and breastfeeding.
The guidelines recommend that women should not delay starting DMDs because they wish to have children in the future and should not suddenly stop taking medicines when they become pregnant, but should contact their MS team as soon as possible for advice. Specific recommendations are given on risks and benefits of taking each of the DMDs during pregnancy and when breastfeeding. Other points made in the guidelines include: • relapses become less frequent during pregnancy, so many women choose to stop DMDs when they become pregnant. For those with very active MS, treatment throughout pregnancy should be considered • steroids can be taken during pregnancy and while breastfeeding if required • having MS does not automatically make pregnancy high risk and should not limit options for delivery or choices of anaesthesia.
These guidelines do not cover the risks and benefits of taking drugs for MS symptoms, but the working group plans to develop guidelines for these in the future. In the meantime, they note that guidelines for symptom treatments drawn up for the general population should apply equally to people with MS.
What does it mean? These guidelines give clear and expert advice. The recommendations, based on published evidence, drug pregnancy registers and clinical expertise, will inform and support discussions between people with MS and health professionals. Information on the safety of medicines in pregnancy is constantly evolving and being updated as new data becomes available. The authors of the guidelines suggest that a register for all women with MS who become pregnant, For more gathering data on information, visit medicines taken during pregnancy, mstrust.org.uk/ would be valuable. pregnancy
Open Door May 2019 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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R E S E ARCH U P DATE
Factors affecting DMD prescribing in the UK Within the UK there is variation in prescribing rates and the range of disease modifying drugs (DMDs) offered between the home nations and at the regional level. This research looks at some of the factors influencing health professionals’ prescribing. Authors Cameron E, Rog D, McDonnell G, et al. Title Factors influencing multiple sclerosis disease-modifying treatment prescribing decisions in the United Kingdom: A qualitative interview study. Journal Multiple Sclerosis and Related Disorders 2019; 27: 378-382. Read the summary tinyurl.com/y2sxmdsk
The study
from a temporary flare-up (pseudorelapse) of symptoms. Some definitions, such as “disabling relapse” were open to interpretation. MS nurses in particular stressed the importance of accurate identification of true relapses, which could be difficult when assessments were carried out over the phone or when relapses were reported after the event at annual review appointments. Perceived risk and readiness to prescribe Find The results Neurologists had different information on Analysis of the interviews attitudes towards risks and all the DMDs at revealed several factors msdecisions.org.uk benefits. Some described affecting prescribing themselves as an “active decisions: prescriber” and “fairly Prescribing guidelines aggressive when it’s needed”. Neurologists in England felt Others “took a more careful approach” more restricted by guidelines particularly when considering prescribing drawn up by NICE. They felt that their DMDs with greater risk of side effects. decisions were accountable for at a The more conservative prescribers were national level which gave them limited not convinced about the longer term opportunity for discussion. In general, effectiveness of DMDs on disability neurologists in Scotland, Wales and and were uncertain about the need Northern Ireland felt they had greater for treatment given the unpredictable flexibility and were able to justify decisions nature of MS. In contrast, more proactive locally, giving them greater opportunity for prescribers were concerned that people dialogue with people with MS. might do worse than expected if they were Identifying relapses not on more effective treatments. Eligibility for DMDs is based on frequency Familiarity and prior experience and severity of relapses, but both Interviewees said they were most likely neurologists and MS nurses reported to prescribe a DMD with which they difficulties in distinguishing a true relapse were familiar. This was related to the The aim of this study was to investigate the views and experiences of neurologists and MS nurses to get a better picture of the factors that influence their prescribing patterns. Researchers carried out interviews with 18 neurologists and 16 MS specialist nurses from different settings across the four UK nations. Interviews were recorded and analysed to identify underlying themes.
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Open Door May 2019 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk
number of people prescribed the drug so far and whether they or their service had been involved in the drug’s clinical trials. Positive and negative experiences from people taking one of the drugs also affected confidence in prescribing and recommending DMDs. Peer networks and prescribing cultures Prescribers were influenced by what colleagues were doing locally and nationally. In some centres, neurologists worked within a multi-disciplinary team to develop a standardised approach to prescribing DMDs. In other centres, prescribing patterns could be influenced by strongly expressed views of local opinion leaders.
What does it mean? The study has identified some of the factors that contribute to variation in prescribing of DMDs in the UK. The researchers make a number of recommendations including more open acknowledgement of differences in health professionals’ attitudes to prescribing DMDs and how this affects equitable access to DMDs regardless of location. Strengthening peer networks would improve confidence in prescribing the full range of DMDs, particularly for smaller centres and general neurologists who prescribe DMDs.
R ESEARCH U P DATE
How do families affected by MS manage health information? Finding and interpreting health information has become an increasingly important part of living with MS. Previous studies have looked at how a person with MS manages information about their condition. For this study, researchers wanted to explore how couples and families affected by MS cope with health information.
Authors Mazanderani F, Hughes N, Hardy C, et al. Title Health information work and the enactment of care in couples and families affected by multiple sclerosis. Journal Sociology of Health & Illness 2019; 41: 395-410. Read the summary ncbi.nlm.nih.gov/m/pubmed/30677163
The study UK researchers analysed interviews with 77 people affected by MS – 12 people with MS, 49 partners or spouses, 7 parents, 5 children, 2 siblings and 2 friends. Almost all interviewees were older than 30 years and represented as wide a range as possible in terms of age, ethnicity, gender and length of time since diagnosis.
The results Interviewees regularly stated that information was critical for living well with MS but at the same time the sheer quantity was seen as overwhelming, timeconsuming and, at times, emotionally distressing. Couples and families developed their own unique ways of dealing with health information, reflecting relationships between family members, personal preferences and technical abilities. In most families, one person, usually the person with MS or their partner, took the lead. MS was often seen as something a couple or family faced together, and sharing a life with MS often went hand-in-hand with sharing information about it. This was not always the case and differences in attitudes to receiving or sharing healthrelated information could lead to family
tensions. This was especially true where Access to online resources, such as search the person with MS resisted receiving engines, social media and patient forums, or sharing health-related information. were seen as both good and bad; while Some relatives felt they had to encourage they enabled access to information, or even force the reluctant person to be support from other people with MS and more involved. news about medical research, they were Partners sometimes felt uncomfortable also viewed as potentially spreading requesting information as they were not misinformation, time-consuming and the person with MS and felt dependent on technical skills. that to do so would be an For What does it mean? invasion of privacy; others help finding The study shows that when spoke of disclosing or information on someone is faced with living obtaining information MS, contact our with a long-term condition irrespective of the Enquiry Service on like MS, family members and wishes of the person 0800 032 38 close friends can play a vital role, with MS because they felt 39 seeking out, sharing and managing it was in their best interest information. It may be helpful for and saw it as an aspect of health professionals to find out who is caring. the key “information worker� within a Couples found different ways to limit the family, to ensure that they, as well as the volume of information they received, person with MS, receive the necessary perhaps by restricting themselves to a information. single source or forum, such as a Facebook Managing health information is a group. Changes in their circumstances significant but demanding aspect of living might trigger more information seeking with MS and should be recognised as which then tapered off until the next such, but the researchers warn against trigger. Interviewees described numerous assuming that simply providing more instances when information was withheld information gives people more power or modified if it was deemed too upsetting or control over their health care and for other members of the family, decisions about treatments. especially children and older relatives.
Open Door May 2019 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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MY M S S TO RY
“We celebrate the little things so much more” Ahead of Carers Week in June, Jen Wharrier writes candidly about the day to day reality of life as a carer. I’d never imagined myself as a carer. Always thought I’d be too selfish. But you never know how you’ll deal with a situation until you’re in it. I met Dave online back in 2005. I knew about his MS from the start and I was amazed at how resilient and strong he was in the face of his rapidly progressing primary progressive MS. He was funny and confident and his cheeky nature lured me in. He walked with a stick when we met. I can still remember seeing his slim 6ft 4 frame striding over with his cane in hand as he wolf whistled at me from across the square 14 years ago. Our relationship moved on, as did his MS, leaving him needing a wheelchair permanently within about a year. Still, we carried on as ‘normally’ as we could, going to gigs, moving in together, getting married and settling in sunny Lytham St Anne’s. We adopted a beautiful dog, Bailey. Our family was complete! Life was good! Then, MS had other ideas. Dave started to get weaker. We were struggling with bathtime and even with his stairlift, getting about the house was becoming difficult. I was working full time and out of the house for 12 hours a day, leaving Dave to fend for himself. We had to move. We were lucky and were given the opportunity to move into a newly built ground floor flat with a wetroom, but we had to re-home our beautiful baby girl as dogs weren’t allowed. Our hearts broke, but it was for the best. We settled into our new place, but Dave’s MS was progressing again. I reduced my hours at work. My caring role was taking over from my being his
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wife and when he eventually needed a profiling bed, separate rooms sadly put the nail in the coffin of us as a man and wife. I was feeding, bathing and toileting him and I had to take over everything from Dave’s healthcare and all our finances. Eventually, he couldn’t be left alone and I had to quit work entirely and be his full time carer. Our world closed in. Initially, I became very depressed at all I felt I’d given up. But I got myself help from my GP and started to adjust to this new stage.
“Being a carer for a partner is probably one of the toughest things you could ever do”
Now, my days are pretty much all the same. We have a well regimented routine of getting Dave washed, dressed, toiletted, fed, sorting out Netflix, more feeding, bedtime, and doing it all again the day after. Dave is predominantly confined to bed now so needs around the clock supervision. Life as a carer can be monotonous! Needless to say, I keep myself occupied with lots of hobbies. I needle felt, knit, make soap and care for my new babies, my pet rats. Every Saturday , Dave’s younger brother looks after him so I get a few hours off to be ‘me’.
Open Door May 2019 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk
Jen and Dave I’m a member of a couple of Facebook groups for MS (facebook.com/groups/ multiplesclerosistrust) and it’s wonderful to chat to people with MS and carers alike as you can only truly understand this condition if you live it. It is invaluable when you want to rant or vent or just share what you’ve been up to that day. We celebrate little things so much more when you have a chronic illness to cope with. There’s a local carers organisation that runs support groups too, as well as daytime respite, so there’s help out there for us carers, we just need to be brave and reach out for it when we struggle. Being a carer for a partner is probably one of the toughest things you could ever do. MS takes away so much from a relationship, and it’s difficult to adjust to not just being a wife. You have to change your priorities and give up parts of your life, which is hard to come to terms with. But for me, enabling Dave to stay in his home with all his creature comforts, it makes it all worth it. He’s happy, healthy and loving having pizza and Guinness when he likes! And he’s still Dave. He’s quieter and less confident than he used to be, but he’s still in there. The cheeky chap Find out more about comes the help and support out every available to carers at now and mstrust.org.uk/carers again. We’re not giving up just yet!
B LO GG IN G
Staying connected Many people with MS find support through the online community. There is an ever-growing range of social media groups, blogs, forums and discussion groups where people with MS can share experiences, ask questions, and connect with other people who understand what they are going through. Emily Thurston writes The Wibbly Dinosaur blog. Here she tells us how blogging has helped her deal with “all the craziness that MS throws at you”.
On Thursday, 9 September 2010 my life took a rather unexpected turn. “You have MS.” The words were spoken by my neurologist, a somewhat pompous doctorman with a dry, old school manner that would take me several months to grow accustomed to. Around 110,000 people living in the UK today have been on the receiving end of this perceived ‘diagnosis of doom’; a club that I didn’t particularly want to join but one that I have gradually learnt to embrace and at times even be grateful for. You see, the diagnosis was the kick up the bum I needed to get my priorities straight. With my whole life being turned upside down I had to come to terms with the ‘new me’. But MS didn’t mean the end of all my dreams as I had feared, on the contrary, it was the start of all the best things that have so far happened to me. I suddenly found myself with renewed ambition and, despite being scared, I was also excited. Shortly after I was diagnosed I found myself planning a wedding and dreaming about having children, which had previously not figured much on my agenda. I am now 36 and married with three kids and two cats. Life is exciting, challenging and beautiful. During my first year of living with MS I began meeting others who had found themselves in the same wobbly boat - I finally had friends who ‘got’ what it was like to have an electric shock surge through your body when you lowered your head, and who laughed knowingly each time I stumbled like a drunkard; I wasn’t alone,
there were others just like me! Finding people with whom I could relate was one of the best things to happen and I soon realised that there were a heck of a lot of people out there who were dealing with this alone. And so I began writing upbeat bits and bobs on a social media page for a local MS support group. I wrote candidly about situations I found myself in thanks to MS and people were incredibly responsive to it. It became clear that I had a lot to say on the subject, which led me to launch my own blog, thewibblydinosaur.com. My aim is to promote a positive and relatable message for people with MS and those close to them.
can cause I try to find a balance in my writing. My posts have so far covered topics as varied as going through the diagnosis process, having an MRI, starting treatments and coping with depression to comparing myself to He-Man, dealing with the daily struggles of doing the school run, using a dishwasher or attempting to change a bed sheet. Indeed, it is these more mundane activities that are the most fun to write about and hopefully to read! There is no denying that part of the joy in sharing my story is the feedback I get from people who read it. It is so awesome to know that I have perhaps helped others deal with their own MS in some way and to receive messages from people sharing their own stories with me. I feel really excited about my blog, I’m excited about the opportunities that are opening up because of it and, more than anything, I can’t wait to reach out and engage with more people who find themselves in the same painful pickle as me.
Emily Writing provides a wonderfully therapeutic way of dealing with all the craziness that MS throws at you and I’d recommend it to anyone. Since starting my blog I have seen my own attitude to the condition change for the better as I strive to see the positive side of potentially traumatic experiences such as wetting myself in public or undergoing an invasive bladder pressure test. Without dismissing the genuine distress that these incidents
You can find links to a whole range of MS blogs and support groups on our website at mstrust.org.uk/a-z/ support-groups
Open Door May 2019 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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S U P P ORT E R STORY
Cycling for my sister As he gets set to take on his biggest challenge to date, we caught up with our intrepid supporter Kenny Smith to find out more about the inspiration behind his fundraising.
There’s going the extra mile for a cause you’re passionate about may imagine, is intense and exhausting. Kenny is on his bike and then there’s going the extra 2,655 miles! That’s exactly what three nights a week and at weekends, and when he’s not out our supporter Kenny Smith will be doing on June 12 as he sets off cycling he’s at the gym. He’s on a strict diet, and his evenings are on a 50-day cycle ride around the UK in support of the MS Trust. usually spent researching the areas he’s riding through, finding It’s a challenge of epic proportions. Kenny will be riding solo, accommodation, organising fundraising events and sending out unsupported and carrying everything he needs for “email after email”. the 50-day ride. He’ll start and finish in his home But what keeps him going through it all, town of Chichester and on the way cycle through and what will no doubt keep his legs turning the likes of Land’s End, Liverpool, John O’Groats, during the toughest moments of the ride too, “I’m living and Sunderland, and Letchworth, home of the MS Trust. is his sister Kathleen. “My inspiration for all my breathing the ride every It really is, Kenny says, “the big one.” challenges has always been my sister Kathleen, minute of every day” “I’m living and breathing this ride every minute who lived with MS for all of her adult life,” Kenny of every day,” he says. “It has taken over if I’m explains. “She was a wonderful person who had honest. I’m lucky my wife Sandra is so supportive a beautiful character and never had a bad bone as I have a bike set up in the lounge on the turbo in her body. trainer, dumbbells and weights set up in the dining “Kathleen really was a fighter and she battled room, and paperwork, books, maps and equipment MS but never let it get her down. Her attitude scattered on every worktop and shelf." was to get on the best she could, and I always admired her for Training and preparing for such an incredible feat, as you that.”
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Sadly Kathleen passed away in the autumn of 2014. Kenny and his family were heartbroken, but he vowed to keep her name alive through fundraising. Over the years Kenny has taken on all manner of incredible feats for the charity. From running marathons (he’s run the London Marathon 10 times!) to climbing Everest and Kilimanjaro; jumping out of planes to holding collections, cake stalls and boot sales. You name it, Kenny’s done it.
“The MS Trust is a fantastic charity that really goes above and beyond to help those living with and those affected by MS. It’s a relatively small UK charity doing a massive job, and I’ve witnessed first-hand the difference they make for not only those living with MS, but also the help, advice and support they give to families too.” What would Kenny say to anybody reading his story and feeling inspired to take on their own challenge for the MS Trust? “I always say the hardest part of taking on any challenge is the signing up to do it. Check out the MS Trust website for how you can take part in an event and sign up,” says Kenny. “The team at the MS Trust are fantastic and help you to reach your goal and can give you amazing advice for your training and fundraising. “It doesn’t matter what you want to do. It can be trekking for days or it can be sitting in a bath of baked beans, or it can be simply putting a few quid into a collection tin, the point is you're doing something to Inspired make a difference for those living with MS and that really by Kenny’s is all that matters.” fundraising efforts?
“I’ve witnessed the difference the MS Trust makes for not only those living with MS, but also the help, advice and support they offer families”
Kenny and his wife Sandra “I’ve trekked, run, climbed, cycled, walked and skydived for the MS Trust, just about everywhere.” But what makes this challenge particularly poignant is that 31 July, 2019, the date Kenny is due to finish the ride, would have been Kathleen’s 50th birthday. What does he think Kathleen would have made of it? “I think she would just simply say that I’m completely mad,” he laughs. Kenny started supporting the MS Trust back in 2005. He had a ballot place for the London Marathon and decided to raise funds for the MS Trust. It was the beginning of a “fantastic friendship,” he says.
Find out how you can take on your own challenge for the MS Trust at mstrust.org.uk/ fundraising
There are many different ways you can get involved and support Kenny on this amazing challenge • Why not get together a cheering squad and show your support if he’s riding through your area? You can find the full route at 50dayscycleride.uk. • You could get in the saddle yourself and join Kenny for part of the ride. He’d definitely appreciate the company. Contact our fundraising team to find out more. • You can make a donation at uk.virginmoneygiving.com/kennysmith or text KSUK50 to 70970 to donate £5. • Share Kenny’s fundraising page and website on social media to spread the word.
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STAY I N G ACTIV E
Pilates Exercise doesn’t need to mean running a marathon or going to the gym. It’s all about doing it at your own pace and at your own level. Doing it your way. In MS Awareness Week, we launched a series of accessible Pilates workouts with neuro-physiotherapist Joanne Pritchard, tailored to people living with multiple sclerosis and suitable for all abilities. On these pages we share three exercises featured in the videos.
Mermaid in sitting This exercise can be done with or without a resistance band. Using the band will help increase the stretch and the flexibility in your spine; it also provides light resistance for strengthening the arm movements. If you are using the band, ensure you have a good grip and it is also recommended to use a pair of safety glasses. If you don't have a band, a pair of tights could also work. 1. Sitting in a chair, feet flat on the floor and hip width apart. Feet, knees and hips all in-line; a soft ball or small cushion can be placed between the knees to help keep their alignment. If using a band, two pieces are placed on the chair and the short ends are sat on. Each piece is held loosely by your sides. Remember your posture. Imagine there’s a helium balloon at the crown of your head, pulling you up. Keep your pelvis in a neutral position. If you imagine your pelvis is like a large bowl, the water in that bowl should be level. If the bowl is wonky it will spill. 2. As you inhale, lift your left arm out to your side and overhead. 3. Exhale and lengthen the left side of your trunk whilst reaching to the right with your spine and arm. If using the band, feel your side pressing into the band. Inhale as you return your spine to midline. Exhale as you lower your arm back to the starting position by your side. Repeat on the opposite side and repeat five times each side.
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Things to remember. . . • Always consult your GP, MS nurse or neurological physiotherapist before beginning a new exercise routine • Drink plenty of water and ensure you have a bottle nearby • Ensure you’re wearing loose fitting clothing and well-fitting, comfortable footwear or socks with grip • Make sure the environment around you is safe, with no tripping hazards.
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All of these exercises have been adapted from the APPI Pilates method. Find out more at: appihealthgroup.com
Open Door May 2019 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk
Find the full selection of videos at youtube.com/mstrust. More information on staying active with MS at mstrust.org.uk/ exercise
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Upper back release
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This exercise not only mobilises and stretches the thoracic spine (which runs from the base of the neck to the abdomen) and the shoulders, but the use of the ‘massage stick’ means your stronger arm can assist your weaker arm with the movement. The stick ensures you are also exercising your hand grip and release, and the position of the stick on your forehead or head can act as a measurement of the flexibility and strength of the shoulders and spine. 1. Sitting in a chair, feet flat on the floor and hip width apart. Feet, knees and hips all in-line; again a soft ball or small cushion can be placed between the knees to help keep their alignment. Hold the stick in both hands; if you don’t have a massage stick at home, a rolling pin or walking stick can act as a substitute provided you can achieve a good grip and the item is not too heavy. 2. Remember your posture (think about that helium balloon at the crown of your head and your pelvis as a large bowl). Inhale and roll the shoulders back, then roll the stick forwards on your thighs. 3. Exhale and lift the arms upwards from the shoulders to approximately 90 degrees (the stick should be level with your shoulders/chin). Inhale and hold this position. 4. Exhale and continue to lift the stick upwards in an arc until overhead (ensure you maintain your posture here). 5. Inhale and gently lower the stick down towards your head – if your shoulders can only lift the stick as far as your forehead that is absolutely fine. Exhale and lift the stick and arms back overhead and then downwards in an arc until the stick returns to your thighs and roll it back towards your waist. Repeat 5 to10 times, gradually building up to two minutes practice.
Simple squat with gym ball
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This is an excellent exercise for strengthening your legs, improving you balance and for complementing sit-to-stand rehabilitation. Focus on your alignment and posture throughout the entire exercise. If it feels easy, it probably isn’t being practiced correctly. 1. Stand against a wall with a 45cm or 55cm gym ball behind your back. The feet are only slightly further forward than the hips, and the knees stay in-line with the hips and feet. If you find your knee is rolling inwards or outwards, a soft ball or small cushion can be placed between the knees and can help keep their alignment. If it feels like the ball is pushing you forward, then move your feet a little further forward. Remember your posture (helium balloon and large bowl). 2. Inhale to prepare for the movement. As you exhale, bend the hips and knees in a small range of movement only – the knees should not come any further forward than the toes. Keep the alignment of your knees and hips throughout and keep your back straight. 3. Inhale and hold this position. As you exhale, straighten your hips and knees to return to your starting position. 4. Repeat this 5 to 10 times, gradually builing up to two minutes practice. Open Door May 2019 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk
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FO CU S ON
MS and the menopause The menopause is an inevitable part of life for all women. Yet despite MS being a condition that affects more women than men, the impact of the menopause on MS is neither widely discussed nor clearly understood. Here we break the taboo by looking at what the research says and providing some simple tips to help you minimise your menopausal symptoms.
What is the menopause?
studies that have been done over the years and see what, if any, conclusions can be drawn from them. The menopause is a completely normal and natural part of ageing which usually happens in women between the ages of Effect of the menopause on MS symptoms 45 and 55. It describes the period when a woman’s oestrogen In a small pilot study published in 1992, 30 women with MS levels gradually fall and her ovaries stop releasing eggs. Women completed a questionaire on their menstrual who have been through the menopause stop cycle, the menopause and their use of hormone having periods and are no longer able to replacement therapy (commonly referred to as fall pregnant naturally. The menopause can HRT, which relieves menopausal symptoms by be different for every woman, but most will Anecdotally, some replacing oestrogen). experience some menopausal symptoms. women have reported Of the 19 postmenopausal women in the study, Some of the most common ones include hot that their MS symptoms 54% reported that their MS symptoms worsened flushes, sleep disturbances, mood changes and a reduced sex drive. worsened either during or with the menopause, 38% noticed no change and 8% reported an improvement. In the women after the menopause who’d been given HRT to help with menopausal What do we know about the impact of symptoms, 75% reported an improvement in their the menopause on women with MS? MS symptoms. There are lots of questions surrounding MS This research suggests the menopause may be and the menopause. Do MS symptoms worsen associated with a worsening of MS symptoms in during and after the menopause? Does MS some women and that HRT may help to prevent this, however disability progress quicker in postmenopausal women? Do women bigger studies are needed to prove this. experience fewer relapses after the menopause? Unfortunately A larger study conducted a few years ago explored the many of these questions remain unanswered as the impact of experiences of the menopause in a group of 127 women with the menopause on women with MS is still not clearly understood. MS. The women involved in this study completed a survey which This is largely due to the limited number of studies that have allowed free-text responses, enabling them to provide more investigated this topic. detailed accounts of their experiences. Anecdotally, some women have reported that their MS A number of key themes were picked up on in the survey symptoms worsened either during or after the menopause, but results. Many women reported that hot flushes caused their others have seen no effect on their MS at all. To shed a little MS symptoms to flare up. Women also described an overlap bit more light on this topic here we summarise some of the
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between their menopausal symptoms and MS symptoms (e.g. sleep problems, mood changes, cognitive issues and bladder problems). Other themes included a worsening of MS course after the menopause (particularly increased fatigue and cognitive problems) and many women described the beneficial effect of HRT on their MS symptoms. It’s also worth noting that although these were the key themes highlighted in the survey results, some women reported no effects of the menopause or HRT on their MS at all.
Effect of the menopause on relapse rates and disability progression A study published in 2016 looked at changes in the level of disability after the menopause by following 124 women through their menopause for an average of 10 years. This study found that after the menopause EDSS scores increased at a slightly faster rate, equivalent to a one point change in EDSS score over a 10 year period. This research suggests the menopause may have a small effect on MS and levels of disability. Finally, a more recent study published in 2018 evaluated the impact of the menopause on relapse rates and disability progression in MS. The study followed 37 women before and after they went through the menopause. Results found that within five years following the menopause, relapse rates were reduced. Disability progression was compared before and after the menopause, and results showed that – unlike the previous study – progression continued at the same rate after women had been through the menopause.
Effect of the menopause on bone health Research suggests that people with MS may have lower bone density than people without MS, increasing the risk of weak bones (osteoporosis) and bone fractures. Some factors that increase this risk include mobility problems, long-term exposure to steroids, smoking, and a lack of vitamin D and calcium. In women with MS, the risk of developing osteoporosis can increase further after the menopause because levels of oestrogen – the hormone which helps to protect bone strength – are falling. HRT can help to maintain bone density and reduce the risk of fractures. You can also take steps to help keep your bones healthy and reduce your risk of osteoporosis after the menopause by staying active, doing weight-bearing and resistance exercises, eating healthily and getting enough sunlight.
Conclusions It’s difficult to draw clear conclusions from these relatively small studies, however they do suggest that the hormone changes caused by the menopause may increase symptom severity and disability progression in MS. They also suggest that HRT may improve symptoms that worsen during the menopause. But this is clearly an area where much more research is needed to provide clarity on how the menopause affects the course of MS. The menopause is also a topic which needs to be talked about
more openly in the MS community so it’s no longer seen as a ‘taboo’ topic. By talking more openly about the menopause and raising awareness in articles like this one, hopefully more women with MS will feel comfortable sharing their experiences and be encouraged to bring up the topic with the health professionals in their MS team.
Managing common symptoms of the menopause It’s always best to speak to your GP if menopausal symptoms are affecting your everyday life, however there are some things you can try to minimise the impact of these symptoms. Here are a few suggestions: • Hot flushes – Wear layers of light clothing so you can remove some layers if necessary; carry a handheld fan or cooling spray with you in your bag; avoid potential triggers such as caffeine, alcohol, smoking and spicy foods; exercise regularly; and have cold drinks. • Night sweats – Keep your room cool and well ventilated; have a cold drink by your bed; have a cool or lukewarm shower; put a towel on your bed if necessary; wear light clothing to bed; try a cooling mattress topper or pillow. • Low mood – Make sure you’re getting enough sleep; try to exercise regularly; have a go at some relaxing activities like yoga or meditation; talk to someone about how you’re feeling; do something you enjoy every day. • Reduced sex drive – Talk to your partner about how you’re feeling; take it slow and make more time for foreplay; try to relax by doing some breathing exercises or practising mindfulness; and explore your body through a body mapping exercise (see our website for more details: mstrust.org.uk/a-z/sexual-problems-women-ms).
Sources of help and support • Menopause Matters menopausematters.co.uk • Women’s Health Concern womens-health-concern.org • Royal College of Obstetricians & Gynaecologists rcog.org.uk
You can find more information on the menopause and MS at mstrust.org.uk/a-z/ menopause
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A S K T H E E X P ERT
MS relapses Research suggests that, on average, people with relapsing remitting MS have around one relapse every two years. However the frequency of relapses can really vary between different people and this is one of the reasons why MS is such an unpredictable condition. Here MS nurse, Miranda Olding explains how you can tell the difference between a relapse and symptom fluctuations, and the steps you can take to prepare for a relapse in the future.
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How is a relapse defined?
Miranda says: A relapse is defined by new symptoms or the sudden occurrence of symptoms that you’ve had before – but not for the past 30 days – that last for at least 24 hours and are not being caused by an underlying infection, by heat or by becoming incredibly tired. Relapses often last a lot longer than 24 hours. The symptoms must also be associated with MS, so if you suddenly develop knee pain or nausea and vomiting, then that’s not going to be a relapse. But you may need to ask!
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What’s happening in my body when I have a relapse?
Miranda says: There are immune cells circulating within our blood which are not supposed to cross the blood-brain barrier. This is a really thin layer of tightly packed cells which prevents other cells passing from the blood stream into your brain and spinal cord (the central nervous system). However for reasons we don’t understand, in MS those immune cells cross from the blood into your central nervous system. Once they’re there, the immune cells become confused and recognise the covering around your nerves (myelin) as a pathogen, or an invader, something which is alien, and seek to destroy it. The result is that when the myelin has been damaged, the signal or message can’t travel down the nerve in the way that it should. It’s either slowed down or completely stopped from passing, and then you get symptoms in various parts of the body because the nerves can’t transmit their information. This is the process that’s happening in your body when you have a relapse.
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Can all relapses be seen on an MRI scan?
Miranda says: Ideally a relapse – an inflammatory, demyelinating episode in the central nervous system – should be able to be picked up on an MRI scan. However we know that up to 40% can be missed. They can be missed because the scanners aren’t powerful enough, as scanners vary in their power and effectiveness. Also, you can have clinical symptoms from an incredibly small lesion and those tiny lesions aren’t necessarily picked up by MRI scanners. The other problem is that you don’t necessarily get your scan immediately when you’re having a relapse. Lesions can actually heal up. In the relapsing remitting stages of MS, your body re-myelinates which means it’s creating more myelin and repairing the damage. The bright spots only show up on MRI scans when the nerves are in a damaged state, so if you end up having an MRI scan three months after the event it may well not show up.
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For more information on MS relapses, visit mstrust.org.uk/relapse
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How can I manage my anxiety about having a relapse in the future?
Miranda says: I think it’s about making sure that you’ve understood how to identify a relapse and you know that whenever you’re worried that you might be having a relapse you can get in touch with your MS team. If you have people around you who are supportive, talk with them and explain that because you have MS it’s possible you may have a relapse in the future and that you may need some more support from them during that time. If you’ve got young children and you have a relapse, that may be a time when you really need to call on your friends and family for help because your children’s demands won’t stop. If you’re living without young children, you may be able to take time off work and focus on looking after yourself at home with the support of your MS team. Have discussions with your friends and family. Think about who you could call on. What would you do if you had a relapse? Maybe even write down an action plan. If you realise
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you might not have enough support in place, then talk to your MS nurse and work with them to come up with a plan. Do everything in your power to address the MS. Make sure you’re on the most appropriate disease modifying drug. If you are on a disease modifying drug but you’re still having relapses, have a discussion with your neurologist and MS nurse about whether it is time to switch up. Do you need a more effective treatment? Also, make sure you address your lifestyle too. Are you making healthy choices when it comes to diet and exercise? Then, once you’ve done all this planning, try not to worry. There was a flow chart diagram I saw that said “Is there something to worry about?” >>“Yes” >>“Is there something I can do about it?” >> “Yes” >> “Have I done those things?” >> “Yes” >>“Then don’t worry!” I think these are good steps to follow when it comes to overcoming the anxiety of having a relapse in the future.
Can I exercise whilst recovering from a relapse or will this do more damage?
Miranda says: There isn’t any evidence that’s been published about exercise in relapses in MS. We do know that on the whole in MS exercise is beneficial at reducing fatigue and is an absolute, 100% “yes” in general. My personal advice to people I see in clinic is when you’re actually having a relapse, just absolutely chill out, take care of yourself and rest. If you’re going to have any exercise, just make it very gentle – a little walk in the fresh air, maybe when you’re recovering a bit more, a very gentle swim or a
gentle exercise class. But don’t push it or do anything which raises your core body temperature and increases fatigue because then you’re likely to struggle with the symptoms of the relapse again. Miranda Olding is a clinical nurse specialist in MS and is based at the Bedfordshire and Northamptonshire MS Therapy Centre.
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How can you tell the difference between a relapse and day-to-day symptom fluctuations?
Miranda says: It can be a grey area. A relapse would either be new symptoms or it would be old symptoms coming back which come on without being caused by infection or getting overheated; last at least 24 hours and may escalate. Generally, we would be expecting the symptoms to have some kind of impact on your everyday functioning. If you are worse, number one, always check for infection. However, it’s very common in MS to have a lot of ups and downs, good days and bad days, and that can be closely related to how fatigued you are. These symptom fluctuations can also be a result of previous relapses where your body hasn’t been able to fully recover. When your body re-myelinates after a relapse, the repaired myelin is not quite as strong as the original covering of myelin. This means the repaired myelin can be more likely to short circuit under stress. For example, it might be that you get a numb right foot when you’re really tired, when you have a hot bath, or when you’ve had a workout. That’s just because that area is an area which struggles when you struggle. That’s not a relapse. If you can have a good night’s sleep and then you wake up in the morning and you’re okay again, that’s not a relapse. Similarly, a lot of people with MS have some symptoms which they have to deal with on an everyday basis which are always a problem. If something’s pretty much always a problem, although you might have some days where you feel surprisingly good, when that plays up, that’s not a relapse either. A relapse, on the other hand, is a kind of sudden event, or it might be an event that starts and then escalates and gets worse, maybe over a couple of weeks, and then plateaus off before gradually starting to get better.
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G E T IN VOLVED
My Garden Party If a fun-filled afternoon sipping something bubbly, eating cake and spending time with family and friends in a (fingers crossed!) sunny garden sounds up your street, why not consider hosting a My Garden Party in aid of the MS Trust? Every party, no matter how big or small, will make a difference for people with MS today. Looking for inspiration? Two of our supporters tell us about their garden parties.
Rachel’s story I work for Checkprint, a secure printing company based in Hinckley in Leicestershire. We chose to support the MS Trust as two people are affected with MS within the business, including my husband Phil. The MS Trust was a great resource for Phil and me after his diagnosis in 2016 and we saw a great opportunity to give something back. We like to do at least one fun charity day each year and in 2018 we transformed the office space into an indoor garden with picket fences, lawns, flowers and butterflies. My colleague Jacqueline Burbank and I dressed as Bill and Ben the Flowerpot Men, in keeping with the garden party theme hosting a tea trolley and all the staff brought in a huge amount of food, drink and raffle donations. Throughout the day we raised £212.05. This summer we will be having another event for the MS Trust which will be our ‘Saturday Night In’ - just not on a Saturday, or at night!
Hayley’s story We decided to hold a My Garden Party as the MS Trust has been a fantastic source of support to all of us as a family since our daughter Maddie was diagnosed with MS two years ago, aged 10. We got in touch with the MS Trust very quickly and we were given so much information and advice. Our heads were totally blown away by the diagnosis but being able to have all the information given to us was such a help, it gave us the tools to learn about MS, helped us to prepare questions for appointments and to be able to positively speak to Maddie about her diagnosis. We wanted to give something back to the MS Trust so we decided to hold a garden party. We had fun fair games, a toy stall, sweet and cake stall and a To raffle. We were donated some fantastic find out prizes including a hotel stay, sweet more about hampers and lots of alcohol! We holding a My Garden managed to raise £638 and this year Party for the MS Trust, we are hoping to beat that at our visit next garden party. mstrust.org.uk/
mygarden
Thank you to our amazing volunteers! Volunteer’s Week (June 1-7) is our chance to celebrate and say thank you for the fantastic contribution our amazing volunteers make across the UK, every single day. The MS Trust is a small team of staff, based in Letchworth so we rely on our volunteers to act as our representatives around the UK. Our volunteers act as our face and voice in their local communities raising the profile of MS and the services we have to offer. Volunteering for the MS Trust can be a great way of learning new skills, meeting new people and making a difference for people living with MS. There are many ways you can volunteer, giving as little or as much time as you can. Norman Reid, pictured, volunteers in Hertfordshire, collecting in various locations, he says. “Whilst collecting, I’ve met many interesting people from all walks of life. It’s good fun for an excellent cause. Come and join the fundraising team, age is no barrier. I’m staring 80 in the face, if I can do it so can you!" Find out about the different ways you can get involved in volunteering at mstrust.org.uk/volunteer.
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‘We ran to say thank you to the MS Trust’
Get involved! There are lots of ways you can get involved and support our work helping everyone affected by MS. Here are just a few ideas. To find out more visit mstrust.org.uk/fundraising Three Peaks Challenge Join our exciting new challenge and take on the three highest peaks in England, Scotland and Wales this October. Push yourself out of your comfort zone and be rewarded with some spectacular views and an experience you will never forget! Places are limited so get your information pack now at mstrust.org.uk/threepeaks
Ben Nevis Looking to take on a run this summer? Why not lace up those trainers and join Team MS Trust for the Asics London 10K. That’s what Luke, Hayley, Gareth and Des did last year. The inspiration for running was Luke’s wife Lisa, who was diagnosed with relapsing remitting MS in October 2016. Luke rallied his sister Hayley, her husband Gareth and Lisa’s dad Des to take on the challenge for the MS Trust together, to say thank you for the support and care they were given as a family. “We felt the treatment Lisa received was excellent and we wanted to give something back to such a great cause. We believe everything the MS Trust is doing is fantastic and we had to be a part of it. The fact that the MS Trust train the MS nurses across the UK is an exceptional achievement and very important,” Luke says. “Training was difficult as we are not natural runners but building up gradually meant that we were all ready on the day to give it our best shot. The event itself was very well organised, but more importantly the support network from the MS Trust during and at the end of the race was superb. “Meeting the team and other runners after was a great experience and reinforces what excellent work goes on all the time.” The team are now working towards this year’s Asics London 10k on July 21, 2019. If you’d like to follow in their footsteps and make a difference for people with MS today, visit mstrust.org.uk/british10k to sign up. If you've got your own place in the run, you can still join our team! Find out more by calling 01462 476707. Why not encourage your friends and family to join you, just like Luke did? Or get your work colleagues together to create a team? Running is much more fun when you’ve got somebody to have a chinwag with along the way.
Join our team trekking to the summit of the UK’s highest mountain from 27-29 September. Enjoy Scotland’s breath-taking scenery and enjoy a hot chocolate or pint at the bottom to celebrate. Visit mstrust.org.uk/bennevis to find out more.
Be Bold in Blue Anyone can be Bold in Blue - anytime, anyplace, anywhere! Organise a dress down day at work, hold a quiz at your local pub or arrange a collection in your community. . . the list is endless. Download a fundraising guide at mstrust.org.uk/blue
Ultra Challenge Series Pick your challenge! The Ultra Challenge is a series of endurance events across the year, which you can walk, jog or run. There are a variety of distances and events to choose from. Decide which you will do at mstrust.org.uk/ultra
Celebratory giving Do you have a special occasion coming up where you would like to support the MS Trust? Let us know and we can send you fundraising materials like balloons and collection boxes to make the most of your party. Find out more at mstrust.org.uk/celebrate
Skydive This summer, experience the thrill of skydiving from 10,000ft and freefalling at around 120 mph before parachuting back to the ground. Find out how you can take part at mstrust.org.uk/skydive
To find out more about supporting the work of the MS Trust call 01462 476707 or visit mstrust.org.uk/fundraising
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15 M IN U T E S W ITH A PAEDIATRIC NEURO LO GIST
Dr Evangeline Wassmer MS is not a condition that just affects adults; although rare, it can happen in children too. These children are diagnosed and treated by paediatric neurologists. Here we chat to Evangeline Wassmer, paediatric neurologist at Birmingham Women’s and Children’s NHS Foundation Trust, to hear what inspired her to take on this role and to learn more about the new group of specialist centres providing support and treatment for young people with MS.
Why did you want to become a paediatric neurologist?
What support is out there for young people with MS?
When I was at medical school I was always fascinated by how the brain works. Neurology is an exciting field as there have been so many new developments, challenges and opportunities. Understanding why people have neurological symptoms and being able to make a specific diagnosis of neurological conditions like MS has become possible thanks to neuroimaging and other new innovations. Treatment opportunities are an ever expanding field – these are exciting times for paediatric neurology.
There is now a national service for paediatric MS. There are five centres (made up of seven hospitals) covering the UK. These hospitals are based in Cambridge, London, Birmingham, Manchester, Newcastle and Liverpool. For many years the centres have been working together as the UK Childhood Inflammatory Demyelinating Working Group (UK-CID) which meets regularly. We have developed information sheets, we discuss complex patients, and carry out research to better understand the condition. NHS England has now acknowledged paediatric MS as a rare disease service, and has facilitated this service development and collaboration even further. MS nurses for children with MS are being recruited and more support and information is now available.
Can you explain what your role involves and what a typical day looks like for you at the hospital? I look after many children with neurological conditions. I see children with learning difficulties, dementia, seizures, movement disorders, walking difficulties, strokes and multiple sclerosis. My day usually starts around 7.30am when I check my emails and post. We will often have a multi-disciplinary meeting where a few neurologists, radiologists and nurses meet to discuss children who have more complex care and treatment needs. Then I will do a ward round and see children who are admitted to hospital with neurological problems. I will see them in clinic and give advice regarding diagnosis, care and treatment. I try to listen and understand what the needs of these children are, and also try to help. Many neurological conditions do not have a cure and therefore often we can only help with managing the symptoms. How does MS differ in young people compared to adults? The symptoms of MS in young people are often quite similar to the symptoms seen in adults. However younger children are often more severely affected when they have a relapse, and can sometimes even require intensive care. The relapses are often more frequent in young people but they tend to recover more quickly. Children are also at a very different point in their lives to adults. They have to go to school and often can’t take time out to adjust to a diagnosis of MS. Having relapses and being tired can sometimes make it difficult to attend school full time. Some children also find it difficult to concentrate and others find learning more difficult because of memory difficulties and problems processing information.
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What do you find the most rewarding aspect of your role? I will always remember my first encounter with a young girl with MS. She had so many questions, some of which I couldn’t answer. “Am I the only one to have childhood onset MS? Why me? Is there any treatment? What does it mean for my future?” She inspired me to be part of the set up and establishment of a paediatric MS service in the UK and to find answers to her important questions. What advice would you give to a young person who’s recently been diagnosed? Ask questions and never give up on your hopes and dreams. Together we will work to achieve them; to reach your education goals and vocational potential, and to help you live an exceptional life.
Open Door May 2019 Office number: 01462 476700 mstrust.org.uk info@mstrust.org.uk
Information and support for young people with MS can be found on our MSTV YouTube channel: youtube.com/mstvuk
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The A to Z of MS www.mstrust.org.uk/a-z Want to know more about something you’ve seen in Open Door? Browse our online A to Z of multiple sclerosis for up-to-date, relevant and practical information on a whole range of topics.
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