Open Door November 2017

Open Door Quarterly newsletter of the MS Trust

November 2017

Advanced MS Champions

How we’re working to transform support for people living with severe effects of MS

Also in this issue New nurses for Bradford and Lanarkshire

Meet the women creating stylish clothes for wheelchair users

Top tips for improving your memory

Ask an expert: what’s a healthy diet if you have MS?

Welcome to the November issue of Open Door I’m sad to say that this is my final welcome letter for Open Door after nine years as Chief Executive.

It has been a real honour to lead the MS Trust, and a joy to work here for over 13 years, however it is time for someone else to open the next chapter of this brilliant charity.

I am enormously proud of the team at the MS Trust and everything they accomplish for people affected

by MS. There are too many achievements to list, but a particular highlight for me is our Specialist Nurse Funding Programme, bringing MS Trust trained and supported nurses to parts of the UK we know have

urgent need.

I’ve also been delighted to see the growth of our information service, now reaching more of you than ever with reliable and practical information online, on the phone and in print.

For the future, I’m very excited to see the development of our Advanced MS Champions project, which you can read more about on p11. It is the Open Door will culmination of many years’ research and consensus always be free to our building and I look forward to seeing it grow. readers, but it costs us £2 To all of you who have supported our work to produce and post each profound thanks, it has been a pleasure and a issue to you. privilege to meet many of you over the years.

If you’d like to donate to With very best wishes for the future cover these costs text Pam Macfarlane, Chief Executive, MS Trust OPEN44 £2 to

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How we’ve been working hard for people with MS since our last issue Bringing new MS nurses to Bradford and Lanarkshire Following the arrival of Joanne and Jonathon (left) in Leicester in June, we’re delighted to announce that Sally in Bradford and Claire and Julie in Lanarkshire are the latest MS nurses we’ve helped recruit and fund as part our pioneering Specialist Nurse Programme. We know that they’re going to play a major part in helping local people living with MS. We’re also talking to several NHS organisations across the UK, and hope to announce more new nurses very soon. Find out more about why we’re funding and training MS nurses and how you can get involved at mstrust.org.uk/nurses

Producing MS information you know you can trust Many of you have told us how much you rely on MS Trust information. You know that it’s reliable, easy to use and helps you understand and learn to manage your MS. It was great to get this officially acknowledged by the Information Standard when we were recently reaccredited. The Information Standard is the NHS England body that checks the quality of public health information. Whenever you see their logo you know that the information has been confirmed as being clear, accurate, evidence-based, up-to-date and easy to use.

One place you’ll see the Information Standard logo is on our new resources for people with progressive MS. These have been updated to cover the latest research and include new information on self management and coming to terms with progressive MS. For more details or to order see the form on p24 or visit mstrust.org.uk/progressive-MS 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 November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

Meeting many of you at the Great North Run!

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It was a thrill to meet so many friends and supporters at the Great North Run in Newcastle in September. Our team of 39 runners including Oli and Steve, right, raised over £18,000 to support our work. Particular thanks to our sterling supporters Anne and Jim Thompson who helped on the day, our regular physio Sarah and physio students from Northumbria Uni (Harvey, Adelina and Bronagh).

We’ve already filled our places for 2018 but if you’d like to join our reserve list, or if you have your own place, please get in touch!

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Contents News

The latest news on Clemastine, stem cells, Mavenclad, new research on vitamin D, plus: should you have the flu jab if you have MS?

Research update

New research on computer games, how MS symptoms might affect your sex life and whether men and women experience ageing with MS differently

Advanced MS Champions

Introducing our pioneering new project to make sure that no one has to take on advanced MS alone

Selling Christmas cards all over the UK! As you may know, the MS Trust was founded way back in 1993 on the proceeds of Christmas card sales. They still play a huge part in enabling us to continue our work, and this year we have a particularly festive selection. You can order them online at mstrust.org.uk/christmas, or in any of the Cards for Good Causes pop-up shops, staffed by volunteers all over the country. Thank you to everyone who has bought or is planning to buy cards, and particular thanks to our brilliant volunteers!

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Forward thinking fashion

We meet two women making sure that adaptive clothing needn’t be a style-free zone

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Boost your memory

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Ask an expert: diet and MS

Dr Nancy Chiravalloti introduces two techniques that could improve your ability to remember things on your to-do list

Dietitian Dr Conor Kerly answers your questions on whether your diet can affect your MS

Supporting your nurses and therapists to make even more of a difference This year’s MS Trust conference for specialist health professionals took place in November and was our 21st annual event. Over the past two decades we’ve supported the development of hundreds of MS nurses and therapists, who have in turn worked with thousands of you. With your support we look forward to the next 21!

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Get involved

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15 minutes with MS nurse Verity Duff

Dave Evans shares his life-changing journey cycling from London to Paris, plus festive fundraising and all the latest opportunities to raise funds to support our work

Verity tells us about how MS Trust training has made all the difference in her work as an MS nurse

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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News Clemastine may promote remyelination of optic nerve Results of a small study suggest that clemastine, a drug used to treat allergies, may repair damage to myelin in the optic nerve of people with MS. The phase II trial involved 50 people with relapsing remitting MS with evidence of long term damage to the optic nerve.

The study used visual evoked potentials to measure the speed at which nerve impulses travelled from the eye to the visual cortex at the back of the brain. When the myelin coating of the optic nerve is damaged, the nerve impulse is slowed down.

Treatment with clemastine resulted in a small improvement in the speed of the nerve impulse.

The researchers interpret this as showing repair to the damaged myelin coating of the optic nerve. The results suggest an

Stem cell research threatened by ‘unscrupulous’ clinics

improvement in vision, but the numbers involved were too small for this to be conclusive. The researchers were unable to show the repair on MRI scans and other measures of myelin.

Clemastine treatment was associated with fatigue, but no serious side effects were reported.

The dose used in the study was larger than normally used for allergies.

The researchers warn that more research with larger numbers of people is needed to better understand the role clemastine may play as a treatment for Look out people with MS. for an article To read the full text about stem cells in of the paper in the the next Open Door. For Lancet visit tinyurl. more info visit com/clemastine-MS

mstrust.org.uk /a-z/stem-celltherapy

A combination of poor quality science, unclear funding models, unrealistic hopes and unscrupulous private clinics threatens stem cell research, according to a report published in The Lancet.

Excitement about stem cell therapy, often inflated by coverage in the media, has led people in UK to look for treatments in services abroad. The Lancet article warns that this has allowed some clinics to appear that are poorly regulated and peddling “untested and potentially ineffective therapies”.

Our enquiry service has been in contact with people with MS traveling abroad to receive stem cell treatment. We advise caution.

Although evidence is beginning to appear, the treatment is very expensive, can potentially be dangerous and there can be problems in getting aftercare once people return to the UK. For this reason we advise anyone considering such treatment to speak to their MS nurse.

Thank you to the October Club!

MS Trust supporter Edith Monk shares her experience of living with MS at The October Club dinner at The Savoy in London in October

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In the August edition of Open Door we were delighted to announce our partnership with The October Club to transform care for people with advanced MS. The club has since held a fundraising day at Ascot and a dinner and auction at The Savoy to fund the pilot of our Advanced MS Champions programme.

Our Chief Executive, Pam Macfarlane said, “We’d like to thank The October Club for organising such wonderful events, and everyone who attended or donated auction prizes for their generosity and support.

The money raised will make a real difference for people with advanced MS.” Find out more about our Advanced MS Champions project on p11.

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

New research on vitamin D and MS A study of vitamin D levels published in Neurology in September was widely picked up in the media. The study found that looking at vitamin D levels in a person’s blood may help predict whether they are at risk of developing MS. “There have only been a few small studies suggesting that levels of vitamin D in the blood can predict risk,” said study author Kassandra Munger. “Our study, involving a large number of women, suggests that correcting vitamin D deficiency in young and middle-aged women may reduce their future risk of MS.” For the study, researchers used a repository of blood samples from more than 800,000 women

in Finland. Then the researchers identified 1,092 women who were diagnosed with MS an average of nine years after giving the blood samples. They were compared to 2,123 women who did not develop the disease.

Of the women who developed MS, 58 percent had deficient levels of vitamin D, compared to 52 percent of the women who did not develop the disease.

“More research is needed on the optimal dose of vitamin D for reducing risk of MS,” said Munger.

“But striving to achieve vitamin D sufficiency over the course of a person’s life will likely have multiple health benefits.”

Should I take vitamin D supplements if I have MS? Vitamin D has several important roles in the body including keeping bones and teeth strong and healthy and regulating immune responses. You can get it in several ways. It is manufactured by the skin when it is exposed to sunlight, it can be obtained in the diet or by taking supplements.

However, levels of vitamin D in people in the UK are generally low.

The Department of Health reports that a quarter of the population have no more than a third of what is considered an adequate level.

The recommended daily intake in the UK (400IU or 10 micrograms) is based on maintaining healthy bones.

Vitamin D continues to be a hot topic in MS. There are a whole range of opinions on whether taking vitamin D supplements when you have MS could make

a difference and, if so, how much someone should take.

Some MS neurologists are now recommending that people with MS and their family members take vitamin D supplements. Some advocate doses of up to 5000IU a day, while others advise waiting for more evidence of effectiveness and safety from clinical trials before taking supplements.

Taking too much vitamin D over a long period of time can be harmful. As vitamin D regulates the absorption of calcium, too much can encourage calcium to be removed from bones making them soft and also damage the kidneys. Talk to your MS nurse or GP if you are considering taking vitamin D supplements, as your calcium levels should be checked and monitored.

Mavenclad gets European licence for highly active relapsing MS The European Commission (EC) has granted marketing authorisation for Mavenclad (cladribine) for the treatment of adults with highly active relapsing multiple sclerosis.

This follows a recommendation from the European Medicines Agency in June that a licence should be granted.

Mavenclad will now need to be appraised by NICE and the SMC to determine NHS availability in the UK. NICE has started the process and the MS Trust is contributing to the appraisal. A decision from NICE is expected to be published in February 2018, with the drug potentially available on the NHS in England and Wales three months later.

Mavenclad is taken as a pill in two treatment courses, twelve months apart.

In large clinical trials, Mavenclad reduced the risk of relapses by 58% compared to placebo. Mavenclad also significantly reduced the risk of increased disability which persisted for three or six months.

The main side effects reported in clinical trials include reduced white blood cell counts which in most cases were mild or moderate but were considered more severe in about 25% of those taking Mavenclad, and infections, including herpes zoster (shingles).

To find out more about disease modifying drugs visit mstrust.org.uk /ms-decisions

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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Should you get the flu jab if you have MS? Every autumn the NHS advises people living with MS to get a free flu jab. But some people are wary of taking more medication. We looked at the evidence and concluded, that for most people, getting the flu jab is a very good idea MS and flu As well as the symptoms caused by flu itself, the raised temperature associated with the infection can lead to a worsening of MS symptoms and in some instances could trigger a relapse. For this reason, people with MS are included in the at risk group who are eligible to receive the free annual flu jab.

People who live with someone with a weakened immune system or who are their main carer are also advised to have the vaccination.

Should people with MS have vaccinations?

The benefits of vaccination greatly outweigh any risk and people with MS are encouraged to have the annual flu jab and any other recommended vaccinations.

While there are rare complications with vaccinations, the risk of these occurring are the same for people with MS as in the general population.

There are a few exceptions to this guidance. People who are experiencing a relapse may be advised to wait until this has passed before having a vaccination.

Similarly, someone with an infection may need to wait until this has cleared up.

As there is a risk that a live vaccine may still cause symptoms or develop into the disease, these are generally not recommended for people with MS, particularly those on drugs that supress the immune system such as Tysabri

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(natalizumab) or steroids. The injected flu vaccine for adults is not live. The nasal spray flu vaccine for children does contain a live but weakened form of the flu virus.

If you are not sure if the vaccination you are being offered is live or not, talk to your doctor or your MS nurse.

Do MS drugs affect how vaccines work?

It is safe for people taking a disease modifying drug to have the flu jab.

However, people taking Lemtrada should not be vaccinated in the six weeks before and the six weeks after a course of treatment.

In 2014 researchers reviewed previous studies that looked at how the disease modifying drugs affected the effectiveness of the flu vaccine. Some of the drugs altered the response of the vaccine more than others.

For people on one of the four beta interferon drugs (Avonex, Betaferon, Extavia and Rebif) or Aubagio (teriflunomide), the vaccination protected them against flu. The evidence for Tysabri (natalizumab) was mixed with differing results from two trials. Small studies of Copaxone (glatiramer acetate) and Gilenya (fingolimod) suggested that the vaccine was less effective, though the number of people involved was too low to be certain. A more recent study of people taking Gilenya found that almost half were protected by the flu vaccine compared to three quarters of

people not taking the drug.

Vaccines and the risk of developing MS In the past there has been concern over the potential effects of vaccinations on the risk of developing MS. Research has failed to find evidence to support these concerns.

Studies have reviewed previous research on a range of vaccines. They found that the risk of developing MS remained unchanged after vaccinations for hepatitis B, influenza, MMR (measles, mumps, rubella), polio, typhoid fever, the human papillomavirus (HPV) and the BCG vaccination for tuberculosis.

Diphtheria and tetanus vaccinations may even be associated with a decreased risk of MS.

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

To find out more about the flu jab visit mstrust.org.uk /flu-jab

Your views

Lots of you share your views on issues affecting people with MS in the letters, and emails you send us, your phone calls and on our social media channels.

Here we we focus on a couple of burning issues that have got many of you talking since our last issue. Join the conversation at facebook.com/mstrustuk twitter.com/mstrust or simply by giving us a call: 01462 476700

Having an MRI scan What is it actually like to have an MRI scan? People with MS share their experiences. . .

Noisy and claustrophobic. However, just keep your eyes closed and, thanks to MS fatigue, you’ll fall asleep through the whole thing. At least, that’s what’s happened to me!

– Harriet

Starting to use a walking stick Actress Jamie-Lynn Sigler, who was diagnosed with MS aged 20, has recently been trying to remove some of the stigma around walking sticks by talking on social media about how she uses hers. We asked our Facebook community for their advice to people who have just started to use a stick.

They are an enabler. You can buy some really funky ones to match your outfits. Also I prefer ones that have some ‘spring’ in them to act as shock absorbers for the hands, wrists, arms. Some have different ‘feet or paws’ for different terrain.

Key is to get them the right height for your needs – Sue You just gotta do what you gotta do, it’s nobody’s fault, it’s a tool to aid your mobility, if people judge you for having it, it’s THEIR perception problem. I’ve used a stick for about 13 years (I was about 25 and my youngest son was 3). I’ve been in a wheelchair and gone to a desert island (Tangalooma, Australia). You just need to keep moving forward, and don’t let what others think put you off using something to improve your life – John I find using my stick makes me feel a lot less vulnerable. I am less

likely to fall over and my “drunken” swaying reduced. I walk a bit faster.

It’s also a bit of a shield: if I do bump into people, they’re a lot more understanding when they see the stick – Harriet If people can’t see you past the walking device that’s their problem, you’re the same person after all. I have a bright pink walker and love it – Terri We MSers probably all dislike it but just keep positive. Without my stick I’d be a crumpled mess on the floor.....United we stick – Caroline I made my walking stick and crutches personal. I used colourful sticky back to cover them and make them really cheerful – Chris I look at my stick as an aid so I can do the things I want in life and make things a little bit easier” – Ashley

I was given a choice of music to listen to, I chose Robbie Williams, hoping for a bit of ‘Rock DJ’ or something upbeat. First track ‘Hope I’m old before I die’ second track, and I kid you not, ‘Angels’.️ Not exactly putting me in the right frame of mind – Sarah My top tip: if you have long hair don’t tie it back. One time I had a really uncomfortable time in the scanner when my hair scunchy started to dig into my head and get very warm! Must have had a tiny piece of metal in it. Ouch! – Joni I’m odd. I enjoyed mine. I felt very relaxed, maybe too relaxed. The noise reminded me of dance music from the 90’s. I felt dizzy standing up afterwards, but it passed. The three medical staff working during my appointment were really lovely, and made me feel comfortable – and I’m sure that had a huge impact on how I was feeling at the time.

They were friendly and we had a nice non medical chat – Mindy I have a 5 year old and 7 month old, so it’s nice to lie down uninterrupted for an hour – Katie

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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Research update

Keep up to date with the latest MS research by signing up for our email mstrust.org.uk/keepintouch

Could computer games help with MS symptoms?

People with MS are increasingly advised to stay physically active, but for some of us getting to the gym isn’t always possible. This pilot study looked at whether using the Nintendo Wii at home could help people stay active Authors Thomas S, et al Title Mii-vitalise: a pilot randomised controlled trial of a home gaming system (Nintendo Wii) to increase activity levels, vitality and well-being in people with multiple sclerosis Journal BMJ Open 2017; 7(9): e016966 > Read the full study tinyurl.com/wii-ms

The study 30 participants were split into two groups. One group received training and began using the Nintendo Wii for 12 months, while the other group waited 6 months before starting. Physiotherapists provided two training sessions to give background information on exercising and using the Wii, installed the equipment and agreed a personal exercise programme with each participant. They provided continued support and encouragement at regular intervals either by telephone or home visits.

Participants kept a daily log of Wii use and completed questionnaires on their physical and mental health.

Balance, walking style, mobility and hand dexterity were assessed at the start and at 6 and 12 months.

The results Use of the Wii lead to an increase in exercise. Average use of the Wii for the first 6 months was twice a week for 27 minutes per day. No serious adverse events were reported during the study.

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Participants reported a wide range of benefits related to both physical and mental health, for example physical activity, improved mood, better sleep, improved balance, strength and posture and relief of symptoms such as pain and fatigue. For some people, use of the Wii acted as a gateway to other physical activities and to greater self-confidence.

Several participants said they would have liked to have been able to contact others to provide mutual encouragement and share tips.

What does it mean?

The findings suggest that the programme was well received by the majority of the participants, with very few people dropping out. Use of the Wii was good and approached activity guideline levels recommended for MS. Building a resource around a commercial game console and software reduces development time and cost but risks becoming obsolete within a few years; however, expertise gained can

quickly be applied to developing an updated version.

The researchers conclude that the results of the study are promising and support proceeding to a full-scale trial of effectiveness and cost-effectiveness.

More about MS and physical activity

In the past, people with MS were advised to avoid exercise. But recently studies have shown that regular moderate exercise is a good thing, as long as it is enjoyable and fits within your capabilities.

Exercise can be something energetic or something more leisurely. There is no right or wrong exercise.

However, the nature of MS may mean that you have to be more aware of your limits. If you have concerns about doing certain activities, talk to a health professional (e.g. your neurologist, GP, MS nurse, physiotherapist or occupational therapist) beforehand. You have to learn to listen to your own body and to be honest with what it is telling you. As recovery time can be longer for someone To find out more about with MS, be prepared exercises for people with to stop before your MS visit body tells you that mstrust.org.uk/ you’ve reached your exercise limit.

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

How can MS symptoms affect your sex life?

Sexual problems in both men and women are common in MS but is not clear how these affect, or are affected by, other symptoms of MS, such as depression, fatigue and level of disability. This research looked at connections between these aspects of MS and how they are influenced by age, gender and type of MS Authors Young CA, et al Title Sexual functioning in multiple sclerosis: relationships with depression, fatigue and physical function Journal Multiple Sclerosis Journal 2017; 23: 1268-1275 > Read the summary: tinyurl.com/sex-ms-fatigue

The study 722 people with MS completed questionnaires on sexual functioning, fatigue, anxiety and depression and day-to-day life as part of the TONiC study (see sidebar). Of these, 538 were sexually active and 431 (80%) answered questions on sexual function.

The results Of those who were sexually active, only 12.5% reported no impact on any aspect of sexual function.

Sexual problems were classified into three categories: • Primary – MS directly affects sexual response • Secondary – MS symptoms indirectly affect the sexual response by making sexual activity more difficult • Tertiary – psychological and social aspects, such as fear of being rejected because of MS. These aspects were grouped together as “worries” by the researchers.

The great majority (83.5%) had some MS-related symptoms that directly affect their sexual functioning. In addition, only 22.5% reported no secondary aspects and another 22.5% reported no tertiary aspects. Almost two-thirds (63.8%) indicated that they were affected by all three aspects.

There was a strong connection between level of disability and all

three categories of sexual problems.

There were some differences in the sexual problems experienced by people with different types of MS; people with secondary progressive MS had more primary sexual problems, those with relapsing remitting MS had least problems across all three categories. Men had significantly more worries than women, although the type of worries varied by gender, with women more likely to worry about feeling less attractive and men being more likely to worry about sexually satisfying their partner.

Depression, rather than affecting sexual functioning, was found to be affected by the tertiary aspects, with worries about sexual functioning increasing depressive symptoms.

What does it mean?

These results show that the effect of MS on sexual functioning is significant. The tertiary aspects (“worries”) were found to have a considerable impact, largely contributing to the other areas of sexual problems.

The psychological aspect of sexual problems, an area which is often overlooked is clearly important. The researchers highlight the need to discuss people’s worries about sexuality, offering the potential to reduce depression.

More about MS and sex

Both men and women with MS may have sexual issues. Sometimes problems are minor and can be managed easily with general advice, at other times they can be more significant and require specialist input.

Not every sexual problem is due to MS and many of the difficulties described by people with MS also occur in the general population, for example, anxiety or other medical conditions.

The MS Trust has two resources for people with MS and their partners.

Sexuality and MS: a guide for women explains how MS can impact on both sexuality and intimacy and offers positive and practical solutions. It is illustrated with comments, opinions, experiences and tips from women with MS. Sex and MS: a guide for men looks at how MS can affect the sex lives of men and how these issues can be managed.

To order either/both of these books complete the order form on p23. To read online visit mstrust.org.uk/pubs

More about TONiC

Trajectories of Outcome in Neurological Conditions (TONiC) is a large UK study being run by the Walton Centre in Liverpool. It is looking at factors that affect quality of life in MS and investigating how these factors interact. The results will help to tailor support for people affected by MS and identify gaps in services.

If you want to take part in the study you can find out more at tonic.thewaltoncentre.nhs.uk or call the TONiC team on 0151 529 5668.

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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Do men and women experience ageing with MS differently?

Because it’s often diagnosed between 20 to 40, MS is thought of as a condition affecting young and middle aged adults. Yet a growing number of people living with MS are 65 or older. This research investigated whether there were gender differences in how older men and women experience ageing with MS Author Ploughman M, et al Title Women’s and men’s differing experiences of health, lifestyle and aging with multiple sclerosis Journal International Journal of MS Care 2017; 19(4): 165-171 > Read the full study: tinyurl.com/ms-ageing

The study Canadian researchers sent out surveys to people over 55 who had been living with MS for more than 20 years. 743 people responded, of whom 577 were women and 166 were men. Participants were asked to rate their health on a visual analogue scale – a 10 cm line labelled with worst health at one end and best health at the other.

The results Average age, years of education, years since MS diagnosis and level of disability were similar for men and women. However, older men adapted less well to ageing with MS than older women.

Despite having similar degree of disability, being less likely to live alone and less likely to have additional health problems (such as arthritis), older men with MS had a lower perception of their health, coped less well with setbacks, had lower participation in household activities (such as housework and home/car maintenance) and outof-home activities (such as social events), and had a poorer diet.

Older women reported higher levels of anxiety (feelings of unease, worry or fear) whereas older men

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reported higher levels of depression.

Both men and women with higher levels of depression also had a lower perception of their health.

What does it mean?

The results indicate that men cope less well with ageing with MS. The researchers suggest that this may be due to the differences in the traditional roles of men and women. Although women were just as likely as men to retire early due to MS, older women continued to participate in household work and social activities more often than older men; these activities help to reduce the impact of depression on perceived health and quality of life. Any interventions developed to support people ageing with MS will need to take account of these gender differences.

Depression was the strongest predictor of poor health perception in both groups. This reinforces the importance of treating this symptom. If depression is treated it could also trigger other improvements in lifestyle such as greater motivation to follow a healthy diet, take regular exercise and take part in social activities.

The researchers recognized

a number of shortcomings of the study. In common with most survey-based studies, people who have spent longer in formal education, have a more positive outlook and lower levels of disability may have been more likely to participate. With an average age of 65 years, the study sample represents the “young old”; further research will need to target older groups of people with MS, such as those in their 80s.

How can I prepare for the future if I have MS?

Until recently, little attention has been paid to the issues or challenges of ageing with MS, and there are very few resources or services specifically designed for older people with MS. However, there is a growing recognition that more attention should be paid to support people growing older with MS. Making decisions and preparing for the future is an important part of managing your MS. Although MS is unpredictable, and it’s difficult to know how it will affect you in later life, you can begin to develop self-management skills which will help you to anticipate problems and find ways to resolve them. The MS Trust booklet, MS and me: a self-management guide to living with MS looks at setting goals, problem solving and healthy living. To order a copy see the order form on p23 or visit mstrust.org.uk/pubs

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

I M P ROV IN G M S SERVIC ES

Advanced MS Champions This year the MS Trust has been working with city philanthropists The October Club to raise money to pioneer a new role in MS teams: Advanced MS Champions. This is the culmination of our work over the past few years to make MS care fair. First our research established that people with advanced MS were often missing out on specialist support. Then we brought together the MS community to build a consensus on how we could tackle this problem. Now we’re going to be funding six new posts we believe can transform care for thousands of people living with MS. But what exactly is advanced MS, and how will our new Champions make a difference?

What is advanced MS? You have probably heard of the main types of MS: relapsing remitting, secondary progressive and primary progressive. These refer to how your disease has progressed.

Advanced MS, by contrast, is a way of describing the impact MS is having on you, regardless of what type of disease you have.

You might be described as having advanced MS if you: • have multiple, ongoing and complex symptoms affecting you at the same time • need support from other people to help you in everyday life • have significant disability Not everyone develops advanced MS. If you do, it usually happens gradually. Common symptoms can include mobility and balance problems, weakness and spasticity,

tremor and ataxia, bladder and bowel problems.

If you have advanced MS you may rely on carers for a lot of your support, so it’s vital that we also consider them and their needs when we think about improving support.

Why do we need Advanced MS Champions?

From our research, we estimate that about 40,000 people in the UK have advanced MS. That’s almost 40% of people with MS in the country.

In 2016 we published a report which showed that many of them aren’t getting the support they want. Many of you told us that as your MS advanced you were losing touch with MS services – at a time when you needed them more than ever.

Rising demand MS services are already under pressure, and we know that demand is rising. More people are being diagnosed with MS every year, and they are living longer, so MS services have more people to support.

What’s more, increasing numbers of people with MS are taking disease modifying drugs, and some of these require a lot of time spent in administration and monitoring.

We hear from many MS nurses who tell us more and more of their time is spent organising blood tests rather than getting out and visiting people with severe disabilities who may not be able to visit their clinics.

As a result, some MS services are finding it harder to provide the support they’d like to everyone who needs it.

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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So how do we make things better?

What will an Advanced MS Champion do?

We know that if you have advanced MS you need properly co-ordinated support from a whole range of services: these might include physiotherapy, occupational therapy, respite care and palliative care.

But you also need expert guidance from an experienced MS specialist who really understands the symptoms you might be experiencing and who can suggest ways to manage them.

We concluded that we needed to create a new kind of role to carry out both these tasks: an Advanced MS Champion.

We’re delighted that, thanks to the support of The October Club, we’re able to recruit six of these new Champions, across the UK. We’ll fund 90% of these posts for 15 months, after which time the local NHS Trust or Health Board will be responsible. We hope that these first Champions will demonstrate how they can improve things for people with MS, but also make MS services more effective and efficient, and so the role will become a key part of MS teams across the UK.

We’re still working on the full details of these roles. But we do know that an Advanced MS Champion will be a specialist health professional, working as a member of the MS team along with neurologists and MS nurses, whose focus is care for people with advanced MS. They will have highly specialist knowledge and understanding of the needs of people living with advanced MS and their families.

They will have three main responsibilities.

Firstly, they will coordinate care for people with advanced MS across different health and social care services, making sure that they are able to get referrals to relevant health and social care professionals when they need them.

Secondly, they will support and train other heath and social care professionals to understand and meet the needs of people with advanced MS. Thirdly, they will deliver specialist, individualised care to people with advanced MS and their families, helping them understand their condition, manage symptoms and identify problems.

Crucially, they will help people with advanced MS live as independently as possible.

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How will an Advanced MS Champion make a difference?

We estimate that each Champion will benefit hundreds of people with advanced MS, as well as their families and carers. We believe that if you have advanced MS and have the support of a Champion, you will be more likely to: • be able to access the specialist services you need when you need them • get specialist help and advice to manage specific symptoms • experience fewer health complications • experience fewer hospital admissions as a result of your MS • be able to stay in your own home • stay independent in your daily life • ensure there is support for your carers as well as yourself

When you have advanced MS, it’s easy for people to say that there’s nothing else they can do for you. I think having an Advanced MS Champion, on your side, will be a really good thing

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

What happens next?

Right now we’re working closely with health and social care professionals to help make sure we get this right and do the best we can for people with advanced MS. Starting in early 2018 we’re going to start recruiting the first of six Advanced MS Champions.

At the end of the three-year pilot, we will evaluate the value of the programme for people with advanced MS and the NHS. We hope that with the support of MS teams and NHS organisations we will then be able to roll out the programme more widely across the UK.

“the Champions will be able to connect everything up...”

Lyn tells us how she thinks everyone should be able to get the support she receives from her neurophysio, Jody I was diagnosed with MS in 1992, aged 31. For the first 12 years I was relatively unaffected, and tried to carry on as usual at my job working for the government. But unfortunately I took a very dramatic downturn in January 2004 . I never went back to work again and I started using a wheelchair soon after.

I’m lucky in that I get a lot of support from my neurophysiotherapist, Jody. I have a standing frame at home, and she has trained physiotherapy students from the local university to come and stand me. She also gives me lots of useful tips, like the best seating position in my chair, which I can then pass on to my carers.

With my condition, standing when I can is really important. It cuts down my spasms and my legs feel so much lighter – my carer always notices a difference when I’ve been using the standing frame.

It’s also lovely just to be able to stand up and have a conversation with someone and not be crocking your neck all the time! I think it helps with psychological wellbeing too, it makes you feel better about yourself, as when you’re constantly in a chair, just to be stood up for

How can you help?

only half an hour makes such a Thanks to the amazing support difference of The October Club we can fund I’m fortunate that I have some 90% of our 6 new posts for 15 support and am able to pursue months (after which time, they things off my own bat, but I know will be funded by their respective some people with MS won’t be in NHS organisations). However, we a position to do this. I think people know that ensuring that everyone can quickly slip through the net, and affected by MS gets the right just end up sat in a chair, slumped support is a much bigger job. over, not doing anything much.

We’re committed to making This is why I think the Advanced MS sure that no one has to take on Champions project is great, because MS alone. That’s why we publish these Champions will be able to and maintain the most reliable suggest various things and connect and useful MS information. That everything up. They can bring why we’re funding new MS nurses things together, medical and nonacross the UK. And that’s why we medical, and make sure that person continue to support and develop is getting access to everything that nurses, therapists, and whole MS can help them. teams, to deliver an even better When you have advanced MS, it’s service. easy for people to say that there’s We receive no government nothing else they can do for you. If funding for any of this. We can only you haven’t got a supportive family continue this work thanks to the you could easily feel isolated very support of people like you. If quickly; sat at a window watching you’d like to make sure we can the world go by, when you’ve To find out more continue our work, and help got nothing. So I think having even more people take on about our Advanced MS somebody on your side, like MS today, see the details Champions visit an Advanced MS Champion, on p23. mstrust.org.uk/ will be a really good thing.

AMS

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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L I V IN G W I T H M S

Forward thinking fashion Many people with MS live by the motto “I may have MS but MS doesn’t have me” and are determined not to let the disease define them. But what if you find that your MS means you don’t feel comfortable in your own clothes any more, and can’t find anything practical you do like? On this page we meet Helen and Hannah Dunk who have launched a new fashion label for women in wheelchairs, while opposite we speak to Katie Ellis, founder of adaptive clothing company The Able Label In the words of her daughter Hannah, Helen Dunk has always been an “uber glamourous lady.”

“Growing up, I’d see mum every morning do her make-up, do her hair, pull on her Levi jeans and put on her stilettos, and everyone used to say she looked like she was in an 80s band,” Hannah laughs.

But when Helen was diagnosed with secondary progressive MS back in 2000, and found herself having to use a wheelchair full-time, it became a challenge to find clothes that looked great, but also ticked the practical, comfy and wheelchair-friendly boxes too.

A lot of clothes from the high-street just weren’t suitable, and then when they tried specialist shops, they were disappointed to find that, more often than not, it was all rather boring. “I found it really upsetting that we could no longer find clothing that was going to fit well and work with mum’s wheelchair but that also looked fashionable. I’d Google ‘fashionable disabled clothing’ and it would come up with an old lady with grey hair and a purple fleece, and I just thought ‘no, that cannot be her life – she is still young and stylish’,” says Hannah.

Stylish but accessible Determined her mum shouldn’t be robbed of her sense of style, Hannah – who’s always had a passion for design – was inspired to launch Blossom, a new fashion label for women in wheelchairs. Hannah’s range of t-shirts come in a variety of vibrant, fun patterns – perfect for the style-savvy ladies out there, but, importantly, they also have a number of design features to ensure wheelchairusers not only look amazing but feel as comfortable as possible too.

“Mum really struggled with her belly being exposed when she was being hoisted and that really upset me, so I wanted the t-shirts to help protect her dignity. They have been designed to fit on the waistline at the back to prevent material from bunching up, and at the front the material is longer so that the t-shirts don’t ride up and expose people’s midriffs,” Hannah explains.

“They also have longer sleeves than standard t-shirts to give more coverage to the arms, and the labels are on the side rather than the neckline, because I think if

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Helen and Hannah Dunk

you’re sat down all the time, it’s good to have things in places which won’t irritate you. They are really easy to get on and off, which was important, and I wanted them to be fitted to fit in with high street styles.”

I’d Google ‘fashionable Hannah exhibited her t-shirt designs disabled clothing’ and it at MS Life last year and has been would come up with an old overwhelmed by the positive response she’s had from the MS community. “The lady with grey hair and a positive reaction has been immense purple fleece and I’ve been in tears from the inbox messages people have sent me saying ‘this is brilliant’ and ‘we need more’. I honestly didn’t think there would be such a reaction,” Hannah says. “But everyone’s also been telling me all the other clothes they need too, so I will be designing jeans next as there is a huge demand for them.”

And what about Helen, what’s her favourite thing about the Blossom t-shirts? “I love how comfy they are! I didn’t want to go out the house before, but now I do.”

Hannah adds: “A lot of people when they are diagnosed with something, they can feel like they are defined by that, but MS doesn’t make you you. My mum’s still the same stylish, glamorous person she’s always been and these t-shirts show that.”

To find out more visit facebook.com/hdblossom

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

Stylish and practical Katie Ellis tells Open Door about how she was inspired to found The Able Label, specialising in adaptive clothing for women What was the inspiration for the Able Label?

My grandmother had been diagnosed with Parkinson’s and I saw first-hand that dressing was becoming increasingly difficult for her.

At the time, she only needed a little extra support with dressing but hated the fact my grandfather had to help. She wanted to remain as independent as possible, keeping her dignity. She also was adamant on maintaining her style, keeping her identity – there was no way she was going to settle for anything which sacrificed either!

So together, we searched for solutions but quickly found there was nothing suitable. Nothing stylish that was designed to be put on and taken off more easily. All the easier dressing options out there were, as you can imagine – boring, beige and basic.

Appalled by the lack of options, I decided to do something about this, drawing on my experience as a fashion buyer for White Stuff.

The Able Label was born to help all those in the same situation as my Grandmother – who do not want to, and should not have to, sacrifice their fashion for functional clothes.

What research did you do before launching The Able Label?

We spent over a year and a half carrying out numerous focus groups with healthcare professionals like occupational therapists as well as women who

would benefit from easier dressing clothes. We would get one style made up in five different versions – narrowing it down to the most helpful design. From the feedback, we would then go through another round of sampling. This was until we had a range, which gave the perfect balance of fashion, fit and functionality. Just as important as making the clothes easier to dress was ensuring that they were greatlooking too – they had to be styles that people would love to wear yet also find it easier to live with.

How have the clothes been adapted for people with dressing difficulties?

The Able Label range has been designed to help particularly with restricted movement, reduced finger dexterity and poor balance and aims to encourage independence and self-confidence.

We use quality fabrics including a high stretch jersey to make our clothes easier to dress and undress and more comfortable to wear.

Shirts look as though they are button fastening but actually have touch closures discretely hidden.

The capes are without armholes, making them quicker to take on and off. Our skirts fully open and wrap around so you don’t need to bend down to pull them up. The design of the garments has also taken carers’ requirements into account so assisted dressing is quicker, easier and safer. Yet when worn, no one would know they were adapted!

Most clothes are eligible for VAT exemption too.

What kind of feedback have you had from customers?

For us, hearing from our customers is absolutely invaluable as without listening to them, we cannot develop and grow. It has been extremely rewarding receiving feedback from customers praising the range and telling us how it has changed their life for the better.

Here’s just one example: “I was very surprised by the range, it is easier to dress but actually looks stylish as well. They are pretty yet practical and there is nothing else like this around.”

To find out more visit theablelabel.com

Adaptive clothing for all Despite much talk recently about the power of the “purple pound” (as some people now describe the disability market), it can still be hard to find stylish adaptive clothing, particularly if you are young or a man.

Here are a few organisations we have found. Do you know of any others you would recommend?

Email your tips to opendoor@mstrust.org.uk or share your suggestions with us on social media.

• • • • •

wheeliechix-chic.com able2wear.co.uk capr-style.com rollitex.co.uk disabled-clothing.co.uk

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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BRA I N H E A LT H

Boost your memory!

Anyone can have problems with forgetting things, but if you have MS this could be a significant problem. Dr Nancy Chiaravalloti has led research into ways people with MS can boost their memory. Here she shares two techniques that have been proven to improve people’s memories We all have memory failures in our daily life and this is perfectly normal. Whether it’s forgetting your car keys, not remembering the name of an acquaintance or failing to show up for an appointment on time, we all forget things. We’re not computers and our memories are not perfect.

If you have MS you might struggle with your memory functioning every single day. But it is possible to improve things.

My recent research has focused on memory rehabilitation. We’re making good progress and I want to share some of the techniques we have developed.

Memory is a very complicated process. It is composed of three stages: encoding (that is, forming new memories), consolidation (retaining the memories) and retrieval (recalling the memories).

In this article I will focus on encoding because that is where the vast majority of memory failures occur.

We learn things every day. We are constantly relying on our learning and memory systems. You may need to remember what to get at the shop, you may need to remember a series of things from your to-do list throughout your day. You’re learning the name of a new acquaintance, you’re learning a new process that you might have to perform at work. There are so many memory-taxing situations in our daily lives – we can only improve our lives by learning how to learn better.

Imagery and memory So how do we do that? My research team has identified several techniques that help in learning new information. The first one is imagery. Imagery is the process by which we attach a mental image or picture to a verbal idea.

You can do this with almost anything. Let’s say you need to remember the word “house”: you might picture your own house, with all its individual details. By doing this you’re forcing your brain to encode information so the word house is being processed and remembered by your verbal memory networks. But it’s also being processed and remembered by your visual-spatial memory system which is further back in your brain. By 16

Using visualisation remembering in two ways you’re increasing your brain you can combine activity and building two paths of recall. several bits of So how does this help? information into Let’s say I have lots of things on my to-do list one one image. The day. It might seem counterintuitive to say don’t just stranger and more memorable the remember all these things, also remember a series of better! pictures. I still have to remember a whole bunch of stuff and that’s my problem!

The secret is to combine unrelated material and many ideas into one image. Let’s say that you’re leaving for work in the morning, rushing out the door and you don’t have paper so you can’t write anything down. You have to remember to call your mother, to buy eggs and apples on your way home, to pick up coffee for your 9am meeting The secret is to combine and finally you need to remember that last night you changed your wifi unrelated material and password and it’s now “blossom”. many ideas into one image Those are five completely unrelated pieces of information that you’re going to need throughout your day, but you can combine them into one

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image. First imagine your mother. Next imagine her breaking some eggs. On the table next to your mother picture an apple, whatever kind of apple you like best. If your mother really likes apples you might picture your mother eating that kind of apple – anything that makes that image more specific to your experiences and your memories. Next to the apple you have that cup of coffee – imagine it in your favourite coffee cup.

The final thing you have to remember was that last night you had to change your network password to the word “blossom”. It should be easy to picture blossom.

I associate the word “blossom” most strongly with the cherry blossoms that bloom in Washington DC – that’s just the strongest memory of that word to me. For someone else it will be very different.

So you can take several very different pieces of information, combine them into one image and make those items much easier for you to remember.

Instead of remembering that you have to do these five things throughout the course of your day, you have one image; and when you visualise that in your mind it calls to mind these five different things.

Context memory The second technique is context. Context refers to what comes before or follows a word. So if I need to remember the word “house”, going back to our previous example, I might say the old house on the hill was charming. I’ve enriched my memory for that word by providing more semantic meaning to it. It’s old, its charming and it’s up on a hill – that’s a much richer memory for me now.

Just like imagery, you can do this with extremely unrelated material. Let’s use another daily life example: let’s say that you’re running to the shops and you have to pick up peas, hot sauce and a mop: three completely unrelated items located in different parts of the store that have very different uses.

To remember this you could create a story where a man walks into a restaurant. He ordered peas with hot sauce on them. He proceeds to get ill and the waiter has to come over to clean up. It’s a little bit crazy, and you are not likely to see it in your everyday life. However, that little bit of eccentricity makes it easier for you to remember it.

The true power of context comes when you combine it with the imagery. So, take your little story of the man in the restaurant ordering the peas and hot sauce. Let’s create a mental image around that story.

Your image might be a static picture because that’s how you think, so you have a picture in your mind of a young man sitting in a restaurant and he has peas in front of him with hot sauce on top and maybe you have the waiter off to the right holding the mop, waiting for that man to get sick.

That’s one image. But someone else may think more in a movie: perhaps they would picture the man walking in to the restaurant sitting down, eating his hot sauce on the peas, becoming ill and the waiter coming over and cleaning up the mess.

Either way it works: just do what works best for you.

We’re changing how the brain is working and that’s a pretty amazing finding

Long-term difference At the Kessler Foundation we’ve been doing research on memory in people with MS. We teach people these two techniques, five sessions per week for two weeks. After treatment we find a significant improvement in people’s memory abilities on a test where we ask patients to remember a list of words. They do substantially better after treatment then they do before, but more importantly these people are reporting that their memories in daily life are better. They’re able to apply these techniques every day.

This is a tremendous finding. We also see that the brain changes how it was learning and remembering information in only 10 sessions across five weeks. We’re changing how the brain is working and that’s a pretty amazing finding.

These techniques are very simple but they require a lot of practice. You don’t necessarily need to go to therapy to learn the techniques, you can simply start to visualise things: start with one item and then make it two items, three items. Bounce your ideas off a friend.

The important thing to remember is that your memory is not static. We can improve it with effort, but like everything else it takes a lot of practice.

Staying Smart MS can cause a range of cognitive symptoms, not limited to your memory.

Cognition is the general word that covers all aspects of thinking, including memory, concentration and planning.

The MS Trust’s Staying Smart website is designed to help you learn more about these issues, build your confidence in managing them , and help people share useful tips.

To help you work out which type of thinking is tricky for you, the website starts with everyday problems. Each problem is linked to a set of information which is helpful for that type of problem. It might be memory, attention, wayfinding, finding things, language, or executive skills.

Find out more at stayingsmart.org.uk

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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A S K AN E X P E RT

Diet and MS Every week there seems to be media coverage of a new piece of research, suggesting that what you eat or drink could make a difference to how your MS progresses. But diet is a hugely controversial topic in the MS world, partly because it’s so hard to do research. As two new large scale studies of diet begin in the US, we put some of your questions to Dr Conor Kerley, a registered dietitian who was diagnosed with MS when he was 16

Q

I’m considering improving my diet.

Where should I start?

A I’d recommend that people speak to a healthcare professional, like a local dietitian. The best place to start is to simply increase your fruits and vegetables because the evidence we have shows that fruits and vegetables are beneficial for your heart, your brain, your muscles, your bones and so on.

I don’t think it’s very difficult to say, “let’s eat more fruits and vegetables”. I think a good rule of thumb is to try and include fruits and vegetables in every single meal.

So you know, some berries with your breakfast, some salad on your lunch, some chopped vegetables with your dinner, something like that. It can be a simple thing to do.

If someone’s already eating fruit and vegetables at each meal, try to increase it; so if someone is eating one portion at each meal, maybe aiming for 2–3 portions at each meal might be a good goal.

Q

Is there a link between reduced iron intake and MS?

A A recent study published found that children and teenagers who developed MS had consumed less iron in their diets - but this doesn’t mean there’s a straightforward link.

Anybody who went on to develop MS and had a low iron intake might have had lots of other differences from those who did not develop MS. Iron is really important, particularly for our blood cells which help carry the oxygen which give us energy. If someone has a low iron intake, the first major issue is going to be a low energy problem. However, simply improving iron does not always help that energy issue. We need enough iron, but too much iron is not a good thing.

If you are concerned about your iron levels, it’s best to speak to a healthcare professional, preferably a dietitian, because there are small little things we can do to increase our iron absorption. For example, not having tea or coffee with meals.

The best place to start is to simply increase your fruits and vegetables. It’s beneficial for your heart, your brain, your muscles and your bones

Conor’s answers on these pages are his own views based on his clinical practice. There are other opinions on diet and MS. Make sure to speak to your MS nurse before making any major changes to your diet.

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Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

Conor Kerley is a registered dietitian with a particular interest in autoimmune conditions, vitamin D, plant-based nutrition and heart and lung disease.

He has a bachelor’s degree in Human Nutrition and Dietetics, and a PhD in Nutrition. He’s currently working as a content specialist with the Centre for Nutrition Studies in New York, USA, as well as having multiple nutrition and dietetic engagements in Ireland. He was diagnosed with MS at the age of 16. You can follow Conor on Facebook @conorkerleyhealth and Twitter @ConorKerley

Q

Is it worth taking dietary supplements or can a good diet mean there’s no need?

Is there any proof that any dietary advice other than “eat a well-balanced diet” has any effect on MS?

A This is a tricky question because in science we look at evidence and there’s lots of different types of scientific studies which provide different levels of scientific evidence. The gold standard is what we call a double-blind trial. This means that we have two different people in two different arms of the study – so the participant and the researcher – and neither of them know which treatment they’re getting. But obviously if I randomised someone to a gluten free diet versus a low fat diet, they’re going to know which diet they’re on. This has led a lot of doctors and scientists to say that research on particular diets isn’t reliable because it wasn’t done in this manner.

So proof is really hard to come by, particularly when we talk about

Q

a complicated illness such as MS. We do not have definitive proof but we certainly have studies which A I’m a registered dietitian so I’m show how a certain diet can work a big fan of diet over supplements which would make sense. Then in most scenarios, except vitamin we have small studies, which are D which comes from the sun. not perfect, but all suggest that a Unfortunately for about six months diet low in saturated fats (found of the year, from about September in butter, cheese and red meats), to March, in a country which lies high in polyunsaturated fats (found so far from the equator, it doesn’t in seeds, nuts and fatty fish like matter how good the weather is, it salmon, sardines and mackerel) doesn’t matter how much sun we and heavily based on fruits and have, we’re not going to make any vegetables – maybe with the vitamin D. addition of whole grains (oats and I recommend taking a vitamin D wholemeal bread) and legumes supplement in the winter (chickpeas and lentils) – is going time, from September to be quite well balanced and Proof is really to March. I think a good perhaps beneficial for MS. Also, place to start is 2,000 hard to come it does seem that sunlight and International Units (IU) by, particularly vitamin D are quite important as per day. However I do well as aspects like exercise, stress when we talk about a advise most people to get reduction, mindfulness and sleep. complicated illness a blood test to make sure

such as MS

Q

I’ve seen news reports that coffee and red wine are good for you. Could they help with my MS?

A What a lot of these studies will do is ask say 1,000 people with MS, how much coffee do you drink? And then the people who drink the most coffee end up being the healthiest or having the most energy.

However, there is a lot more going on that’s different between those who drink more coffee and those who drink less coffee, so it’s a really complicated question to answer.

I’m not aware of any evidence that coffee is really bad for anybody, including those with MS. In fact, there are some studies showing that coffee may be beneficial in some neurological disorders and may have other beneficial effects.

I wouldn’t recommend anybody drinks excessive amounts of coffee but 1-2 cups per day should be fine for most people. If somebody enjoys

coffee, keep drinking it, guilt free, but perhaps skip the creamy, sugary cappuccinos and the sugary piece of cake!

Red wine is a very interesting story with MS and heart health. It does seem that there are some beneficial components in red wine, however they are also present in red grape juice so it’s not something specific to the red wine. The particular study that was reported showed that people who drank red wine had fewer relapses and did a little bit better. But it also showed that they had more lesions on their brains.

The evidence is that the lesion load on someone’s brain predicts their future disability. So, I don’t think red wine is going to be the worst thing for people with MS, but I don’t think it’s going to be the best thing either.

they’re taking the correct dose. I also recommend that people get vitamin D3 which is cholecalciferol, as opposed to vitamin D2, and is available in pharmacies.

Finally, I recommend people take it with a meal because fatty acids help the absorption of vitamin D. If you take it first thing in the morning or last thing at night without any food in your tummy it’s not going to be absorbed as well. So build it into your daily routine; have it with lunch, have it with dinner, whatever it is, have it on a daily basis.

To find out more about MS and diet, visit mstrust.org.uk/ diet

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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GE T IN VOLV E D

A life-changing journey Dave Evans cycled from London to Paris in July 2016 as part of a group of 40 MS Trust supporters. Here he tells us all about his experience and the lasting impact of the friendships he made along the way Why did I ride? I have MS. It’s progressive but fortunately fairly slow in its progression and I wanted to contribute while I had the opportunity. And besides, I needed a goal, something to push for. My friend Dean agreed to accompany me. I spent about 7 months training and preparing myself, losing 26kg on the way which meant that I was reaping the benefits even before I arrived in London.

The first day was very hot, which was particularly tough for those of us with MS as it can be a trigger for our symptoms, but the whole group was aware of the issues and the support was amazing. The ride to the coast was just great fun, people I’d never met before became friends within minutes, there were no barriers between us. We were all cyclists trying to make a difference, the connection was obvious.

An amazing atmosphere and spirit After over 90 miles, a beer with new friends was a welcome break and when we set off in convoy to the ferry the atmosphere was amazing. I’m ex-Royal Navy so I’m used to teamwork and comradeship on an extreme level and here I was riding in a group that reminded me of a team I hadn’t experienced in years.

It was an amazing ride with great views and good weather. The catering was great, we were well fed and watered throughout the whole event. I wasn’t riding very fast for most of it due to a few injuries I’d picked up along the way, but it was not an issue for anyone.

The excitement on the final day was amazing; we’d got this far, we were going to complete this as a group.

We rode to Paris, stopping along the way at a café where the owner was a bit surprised by nearly 100 cyclists all

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We arrived at the

wanting coffee and cake. Sitting there in Eiffel Tower and my wife the sun talking about the ride with a group was waiting. She was so of friends was something I’ll never forget. It was one of those moments in life that make proud of me, I was so proud of it all worthwhile. her. She knew what it meant As we arrived in Paris the mood was alive, for me to show my MS that we were high-fiving each other, shaking I was in charge hands, taking pictures and enjoying the moment. I remember most vividly the sound of horns beeping and the locals clapping and cheering. I’m sure they’ve seen it before, many times, but the noise and support was out of this world, it brought me to tears. In fact, I’m a little teary eyed as I remember that moment.

We arrived at the Eiffel Tower and my wife was waiting with a big smile, a big yellow banner, a huge hug, a cry of pride and a huge kiss. She was so proud of me, I was so proud of her. She knew what it meant for me to show my MS that I was in charge, not it.

It doesn’t end at the finish line But it didn’t end there, in fact it still hasn’t. The Facebook group that was set up before the ride came alive as we chatted about what we’d achieved and relived moments.

A year later, a lot of the people I met have become friends, we chat regularly and support each other.

There’s talk of a reunion, some of the group are meeting up for the London to Amsterdam ride in 2018 and if I am fit enough and the MS lets me, I will ride with them.

Every member of the MS Trust group rode for me and my MS, for the others on the ride who also have MS and for those unable to ride. They showed me that people care about MS, that they see the impact it has on our lives, how it limits our day-to-day Join us for London to activities and they wanted to help.

Amsterdam next year!

I wrote this for two reasons. The first is to MS Trust will be the Official encourage others to ride for the MS Trust, Charity Partner for the London to to help make a difference. The second is Amsterdam cycle from 6-10 June to share what was a very proud and life2018. We already have over 35 changing few days where I saw and felt real people riding for us, would you friendship, support and caring for others. or someone you know like to join I choke back a little tear as I write this, I our team? Call 01462 476707 or hope you feel it as you read it, and that visit mstrust.org.uk/L2A it encourages you to undertake a similar journey.

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

Get involved

Festive fundraising With Christmas just around the corner, have you ever thought about using the festive season to make a difference for people living with MS? From a Christmas cake sale to a Reindeer Rally for the kids, check out our festive fundraising ideas to get you started: • Organise a Christmas collection in your local area – get in touch and we can provide everything you need.

• Fun for the little ones – organise a Reindeer Rally at playgroup, nursery or school. Download a Reindeer Rally fundraising guide from mstrust.org.uk/reindeer • Take on a Christmas challenge – a mince pie or Brussels sprout eating competition; wear a different Christmas item for the 12 days of Christmas or hold a gift-wrapping contest.

Visit mstrust.org.uk/festivefundraising for more ideas and how-to guides.

• Organise a Christmas Cake Off at work or a lunchtime cake sale. Visit mstrust.org.uk/cake-off for a free guide.

• Festive Jumper Day – join friends and colleagues on Friday 8 December and wear your Christmas jumper with pride (antlers, Christmas slippers or in fact any festive wear will do).

• There are lots of other things you could do like carol singing, organising a Christmas quiz night, holding a bag pack at your local supermarket, organising a Christmas fair or placing a collection tin or two in a local pub or shop.

Whatever you have in mind, get in touch with our Christmas elves Kelly and Claire in our fundraising team. We will support you all the way and the money raised will help us to make sure no one has to manage MS alone. Visit mstrust.org.uk/ festivefundraising

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 Remember us when you shop online Did you know that when you use our links to shop online with over 85 top retailers like Marks & Spencer, Sainsbury’s, John Lewis, lastminute.com and Ticketmaster, they will donate to us at no extra cost? mstrust.org.uk/shopping

Santa Run, London Join our team for this accessible festive fun run. Dress up in your free Santa suit to run, walk or wheel around Victoria Park on Sunday 3 December. mstrust.org.uk/santarun

London to Amsterdam Cycle Ride Don’t miss your chance to join us for this very special 4-day cycle ride from 6-10 June 2018 where MS Trust will be the Official Charity Partner. mstrust.org.uk/L2A

Earlybird offer for British 10K 2018 Join our team for the British 10K London run in July 2018. Book before the end of Jan to benefit from our special earlybird registration offer. mstrust.org.uk/british10k

Trek the Great Wall of China Want to challenge yourself and do something really special in 2018?

Join our Great Wall of China Trek from 13 – 21 September 2018 and raise funds to help people with MS. mstrust.org.uk/china

To find out more about supporting the work of the MS Trust call 01462 476707 or visit mstrust.org.uk/fundraising Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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1 5 M IN U T E S WITH M S N URSE

Verity Duff Over the past 21 years the MS Trust has provided foundation training and continuing support and development to around 600 MS nurses. Together they have gone on to help thousands of people with MS across the UK. Last year Verity Duff from North Northamptonshire came on our foundation course for new MS nurses. We caught up with her to find out about her first year as an MS nurse, and the difference our support has made to her work

How has your first year as an MS nurse been?

It’s still all very new to me! Before this role I thought I knew quite a lot about MS, but when you come into any specialist post you quickly realise actually you don’t!

How did you find the MS Trust foundation course?

It’s a very intense week, but it was fantastic and the speakers were great. It started with a lot of neurophysiology, which I wasn’t confident on, but I soon felt a lot more knowledgeable. We also studied managing MS symptoms, managing relapses, self-management techniques, managing pain, disease modifying drugs, and much more.

Is it useful to talk to other new MS nurses?

It was a really good group, very interactive and not afraid to share experiences and ask questions. There were nurses from all across the UK. It was very interesting to see how different practices are, how different people work, what different services are available, and to share ideas.

What did you take away from the course at the time?

attending MS Trust courses, conferences and seminars.

But most important has been the experience I’ve gained through working with patients and colleagues within our MS team.

I feel much more equipped to support my patients through their MS. This last 12 months has been quite phenomenal, not only in my learning but in other opportunities to develop my work.

Beyond the course, how does the MS Trust help you make a difference for people with MS? Personally I find the MS Trust website a fantastic source of information. I have subscribed to Open Door, and signed up to the MS news email which alerts you to the latest developments in MS and MS services. The website also has an A-Z which contains loads of information about symptoms, medication, management, services and anything you could possibly imagine relating to MS. This resource is invaluable to health professionals and patients alike.

What’s the biggest satisfaction you get from your work?

My mind was full of new things, as was my notebook! I was keen to get back and share what I had learned with the people with MS I see. I also had the contact details of the rest of the group – it’s so valuable to have that. Also one of my personal goals was to be more structured with my clinical assessments and work with people to help them manage their MS.

The day-to-day work is where I get most satisfaction.

Helping people to manage their MS is key to improving their quality of life. I love running my own clinics as this allows me to help my patients make decisions that work for them. I enjoy offering different techniques and ideas to help each person manage their symptoms.

We regularly ask our service users to complete questionnaires, and we get a lot of positive feedback, so hopefully we are doing things right.

One year on, how have you put what you’ve learned into practice?

I think one of the biggest things in the last 12 months has been growing my confidence! The MS Trust foundation course provided a platform which I have been able to build upon through continued reading,

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Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

Find out more about the MS Trust’s work with health professionals at mstrust.org.uk/ nurses

For just £10 a month you could help make sure that no one has to manage MS alone

A regular gift of just £10 a month could make all the difference for someone living with MS. It could mean that they can rely on the MS Trust’s expert enquiry service, website and books to help them understand what their symptoms are and how they can deal with them.

It could mean that they can get help from an MS nurse that we have trained, developed and supported.

And in future it could mean that they get support from one of our new Advanced MS Champions.

We receive no funding from the government or the NHS for any of our work. We’re only able to deliver our services thanks to the continuing support of people like you.

If you’d like to find out how you can make sure our work continues, please call on 01462 476700 or visit mstrust.org.uk/regular-giving

Open Door November 2017 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

23

Finding accurate, accessible information about MS can be hard. There’s so much out there, and so much of it seems contradictory, hard to understand or just scary.

Fortunately the MS Trust enquiry service is here to help.

Our team can help you find the answers you need, whether you want to know more about MS symptoms, drugs, research or ways to live well with MS.

For MS info you know you can trust call freephone 0800 032 38 39 email infoteam@mstrust.org.uk or visit mstrust.org.uk Order MS Trust publications Making sense of MS

Little Blue Book (introduction to MS) MS-444

Core pack – includes information sheets: • About MS • What happens after diagnosis?

• Making the most of appointments • Living well with MS • Resources brochure MS-448

Books MS and me: a selfmanagement guide MS-318

Talking with your kids about MS MS-316

Falls MS-249

The kids’ guide to MS MS-286

Disease modifying drugs MS-90

Sex & MS: men MS-356

Are you sitting comfortably?

Primary Progressive MS MS-352

Managing your bladder MS-429

Sexuality & MS: women MS-213

Living with fatigue MS-204

Secondary Progressive MS

MS-290

MS-458

Delivery details Title

First name

Last name

Job title (if health professional) Address

City/Town

Postcode

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Please return to MS Trust, Spirella Building, Bridge Road , Letchworth Garden City, Herts SG6 4ET Remember, if you have any questions about MS you can call our free enquiry service: 0800 032 38 39 All our information is free, but we can only continue to offer our services thanks to donations.

If you’d like to support our work, visit mstrust.org.uk/donate or text OPEN44 £2 to 70070 Registered charity no. 1088353 The MS Trust and our trading company value your support and promise to protect your privacy. We will only contact you about our

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