Open Door August 2019

Open Door Quarterly newsletter of the MS Trust

August 2019

"I want to knock any stereotypical views of MS out the window" Danielle MacGillivray stars in our new short film, Danielle.

Read her MS story inside.

Picture credit: Chris Booth

Also in this issue Josh's story: Designing a robot for people with MS

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Ocrevus decision: What you need to know

Ask the expert: Cognition problems

Research: Do beta interferons affect life expectancy?

12/07/2019 12:25:43

Welcome to the August issue of Open Door I hope everyone is having a lovely summer and the heat isn’t affecting your MS too much. It’s been a busy time here at the MS Trust, what with our two new Advanced MS Champions starting, one in Cumbria and one in Swansea (find out more about Nicola and Leanne on page 4). We’ve also had a record number of people getting in touch with our Enquiry Service to ask questions about MS, and of course we were there to support our long-standing supporter Kenny Smith as he completed his 50-day cycling challenge around Great Britain. A massive well done and thank you to Kenny - what an achievement.

Open Door Quarterly newslet

ter of the MS

Trust

August 2019

"I want to knock any stereotypical views of MS out the window" Danielle MacGillivra y stars in our new short film, Danielle.

Read her MS story inside.

Moving away from the summer holidays and looking ahead to Christmas (unseasonable as it may seem!), inside this issue of Open Door you’ll find our 2019 Christmas card brochure. Christmas cards play a huge part in enabling us to make a difference for even more people with MS, so have a browse, pick your favourites and get If you’d like to donate £1 those orders in early. to cover the costs of Open As ever, if you have any feedback Door, please text OPEN25 to or suggestions for future content, 70201 please do get in touch at Texts will be charged at your standard opendoor@mstrust.org.uk. network rate. For terms & conditions, see David Martin, www.easydonate.org.

Chief Executive, MS Trust Picture credit:

Chris Booth

Also in this

issue

Josh's story: Designing a robot for people with MS

Ocrevus decision What you need : to know

Ask the expert: Cognition problem s

Research: Do beta interferons affect life expectancy?

How we’ve been working hard for people with MS since our last issue Supporting young people affected by MS Our MSTV YouTube channel has information and support to help young people get to grips with MS, whether they have it themselves or have a family member or friend with the condition. This month, we have new videos on diagnosing MS in young people and living with MS in the family. Check out the channel at youtube.com/mstvuk, and email mystory@mstrust.org.uk with suggestions of topics you’d like to see covered.

Improving MS services across the UK We know that many MS specialist services are stretched, which is why, through our Specialist Nurse programme, we provide the support MS teams need to improve and develop their service, and ensure that the needs of people with MS are being met. For example, with our help, the team at Leicester has created new community and hospital based clinics and an improved phone service to enable them to reach even more people with MS. Find out more about our vital work with MS specialists and how you can support it, at mstrust.org.uk/nurses.

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 August 2019 Office number: 01462 476700 Enquiry Service: 0800 032 38 39 mstrust.org.uk info@mstrust.org.uk

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What’s inside?

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News New Advanced MS Champions, high rate of MS diagnoses in Scotland and results of the Neurological Alliance survey.

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Microaggressions at work, do people taking beta interferons live longer and research into remyelination.

Cheering on our fantastic runners at the Asics London 10K Back in July, our team of 50 runners took to the streets of London for the Asics London 10K. It was brilliant to meet so many of you at the finish line and we’d like to say ‘thank you’ to everyone who laced up their running shoes and made a difference for people with MS. We couldn’t do what we do without you! To find out more about running for the MS Trust, visit mstrust.org.uk/running. Our fundraising team will be there to support you every step of the way.

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Making your voice heard in drug appraisals The MS Trust is committed to ensuring everyone with MS can access the treatments they need and deserve. Recently that’s meant drafting a response to the NICE appraisal on siponimod for secondary progressive MS, a Scottish Health Technologies Group review of stem cell transplantation for very active relapsing remitting MS, and a NICE appraisal on Plegridy. We promise to continue making sure the voice of the MS community is heard loud and clear.

Josh's story Why Josh has used his own experience of MS to design a companion robot.

Healthy hobbies From sewing to baking, four people with MS tell us about their favourite hobby and how it's helped them.

Helping you improve your posture Poor posture is a common problem for people with MS, so we’ve been working with physiotherapist Wendy Hendrie to create a new resource with some practical steps to help you improve your posture in everyday situations, in standing, sitting and lying. You can find the videos on our website, at mstrust.org.uk/posture. Email info@mstrust.org.uk to let us know how you got on.

Research update

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Ocrevus for PPMS Janice from our Information Team answers some FAQs about this landmark decision.

16 Using orthoses Orthotist Emma Davidson explains how orthotic devices can help you manage walking difficulties in MS.

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Ask the expert: Cognition Neuropsychologist Eleanor Ansell has some top tips.

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Get involved Introducing our new awareness pack for schools, how you can raise money while you game and lots of fun opportunities to get involved in our work.

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15 minutes with Danielle MacGillivray Danielle, who stars in our new short film, tells us why she wanted to share her story.

Open Door August 2019 Office number: 01462 476700 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

New Advanced MS Champions in Cumbria and Swansea

If you live in Swansea or Cumbria and have advanced MS, you can contact your MS nurse to be referred to a Champion

We are delighted to announce that our second and third Advanced MS Champions are now in post. Nicola Hyslop has joined the MS team in Cumbria and Leanne Walters will be covering Swansea. Nicola and Leanne both come with a wealth of experience and we know that they will make a big difference to people in these areas living with advanced MS, as well as providing support to families and carers. We caught up with Nicola to find out more.

Congratulations on the new role! What was it about the position that made you want to apply?

In my previous role as a district nurse, I have worked with people in the community setting who have a wide range of clinical and social needs. I wanted to focus on an area of nursing that would utilise all my past clinical experience, local knowledge and links to services, while continuing to develop my career within a specialised area of nursing. The Advanced MS Champion post allows me the best of both worlds, working closely with people with advanced MS within their own environment.

How will this role make a difference for people with advanced MS in Cumbria?

The demand on the MS service in Cumbria is growing and it is staffed by a very small and dedicated team. The patient caseload and the rurality of the local area has often made it difficult for those people with advanced MS to be reviewed regularly, which may have led to unnecessary hospital admissions and them feeling unsupported. I hope to provide people with regular contact in their homes, promote wellbeing and treatment when appropriate, and ultimately reduce the need for unnecessary hospital admissions by ensuring that the right support is in place.

What are you looking forward to most about becoming an Advanced MS Champion?

I am really excited to have the opportunity to take on the challenge of being an Advanced MS Champion.

I am looking forward to meeting and getting to know people with MS and their families, building a good rapport which will enable us to work together, to ensure that they are fully supported and receiving the most appropriate care.

Nicola Hyslop

What made you want to become a nurse?

I started nursing as a health care assistant on a busy orthopaedic ward in Carlisle. This sparked my interest in nursing as a career. I enjoy working with people, Find out more and every day is different. Even small about advanced MS changes can have a dramatic affect and the Champions on someone’s wellbeing - and why not programme at be the person who helps make those mstrust.org.uk/ams changes!

Incidence of MS in Scotland Orkney and Tayside have the highest proportion of MS diagnoses in Scotland according to the latest report by the Scottish MS Register.

The Register records people who are newly diagnosed with multiple sclerosis in each of the Scottish health boards. The figures collected in 2017 show that 425 people received a diagnosis. This gives an incidence rate of 8.6 cases per 100,000 people.

There was a strong geographical

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difference in the results, with a higher incidence in the more northern health boards. The rate in Orkney (17.3/100,000) was almost three times that seen in NHS Borders (6.2/100,000). The highest rate in mainland Scotland was in NHS Tayside (12.2/100,000) The Register also monitors how quickly MS nurses get in touch with people who have just been diagnosed. The new report shows continued improvements with three in four people in 2017 being contacted by

a nurse within ten working days, up from two in four in 2010.

The report draws attention to problems that might affect the results, such as the MS nurse post in Lanarkshire being vacant and also the very high caseload for the nurses in NHS Lothian. Both of these areas have since benefited from new nurses funded by the MS Trust's Specialist Nurse Programme.

You can find the Scottish MS Register at msr.scot.nhs.uk.

Open Door August 2019 Office number: 01462 476700 Enquiry Service: 0800 032 38 39 mstrust.org.uk info@mstrust.org.uk

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Survey shows people with neurological conditions are missing out on vital support

People with neurological conditions are facing long waiting times, limited access to specialists, poor mental health support and a failing social care system, according to a new survey by the Neurological Alliance.

The National Neurology Patient Experience Survey presents a picture of the experiences of people living with a neurological condition in England.

This year the survey received over 10,000 responses, making it the largest survey of its kind. It covered a wide variety of topics, from diagnosis and information, to access to social care and mental wellbeing.

Key findings included: • People with neurological conditions are facing long waiting times and poor access to specialists, with You can read the full one in three respondents reporting that they waited report at: more than 12 months for an appointment with a tinyurl.com/ neurologist. neuropatience • Informal carers are propping up a failing social care system, with over 50% of the respondents with MS receiving care (that they do not pay for) from a friend or family member.

• Mental health support for people with MS is poor, with 50% of respondents revealing that they have not been asked about their mental health by their HP and 30% feeling like their mental wellbeing needs were not being met at all.

• 60% of people with MS who responded to the survey were not able to continue to work as normal because of their condition and a similar number felt like they had missed out on opportunities to develop their career because of it.

In light of these findings, the Neurological Alliance is calling on NHS England and the National Neuro Advisory Group to come together to develop a national neurology plan for England and for the new regional decision making bodies to include neurology as a priority area for improvement in their plans.

David Martin, CEO of the MS Trust, commented: “One in six people are living with a neurological condition in England, but the results of this survey show that, currently, the health and social care system is failing so many of them. This group of people deserve so much more. We will be working with other MS charites and the Neurological Alliance to ensure that people with MS, and other neurological conditions, are not forgotten.”

Date for your diary: Remember a Charity Week

Remember a Charity Week runs once a year to help raise awareness of the importance of gifts in wills. This week long campaign is designed to encourage more people to take a moment to consider leaving a gift to a charity when writing a will.

Gifts in wills have an incredibly positive impact for the MS Trust as they help to fund the specialist care and support we provide for people affected

by MS. Anyone can leave a gift in their will to the MS Trust. No matter how large or small, it’s not only an amazing way to ensure no one faces MS alone, but gifts in wills are also exempt from inheritance tax.

For more information visit: mstrust.org.uk/wills.

Tell us your views!

Look out for the new format of Making Sense of MS, our popular resource for people newly diagnosed with MS. We have identified that we can create more copies if we change from a folder to a book format, allowing us to provide it to more people with MS for the same cost.

We will also be reviewing the content of Making Sense of MS, ensuring it gives people who are new to MS all the information they need to get their heads around the condition.

The new format will be available in the autumn.

Have you used Making Sense of MS? We’d love to hear your views about this resource and how it has helped you.

Email us at info@mstrust.org.uk.

Open Door August 2019 Office number: 01462 476700 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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NEWS IN PICTURES

Go Kenny go!

After 50 days in the saddle, over 2,500 miles covered, and messages of support from Davina McCall and Tom Odell, no less, our amazing supporter Kenny Smith has completed his epic cycling challenge around Great Britain. To Kenny, we simply say, you are a HERO. Look out for a full update on the ride and the final amount raised in the next issue of Open Door. It's not too late to donate. To give £10 text KSUK50 to 70191.

8,380 miles for MS Back in May, over 150 people took on Miles for MS challenges across the UK (and all over the world), and together an incredible 8,380 miles were covered and over £70,000 was raised. Alan’s Miles for MS challenge was to cover 100 miles on a recline and arm bike. He told us: “We all know that MS affects people in different ways. I wanted to help people through the MS Trust while I was still able to do so in a physical way.” Thank you and well done to all our Miles for MS stars! Find out more at mstrust.org.uk/miles.

Thank you to our volunteers!

Volunteers' Week is our chance to say ‘thank you’ for the fantastic contribution our amazing volunteers make across the UK, every single day. Whether you've organised a collection at your local supermarket or volunteered to sell our cards at a pop-up Christmas card shop, we couldn’t do what we do without you. Find out more about opportunities to volunteer for the MS Trust at mstrust.org.uk/volunteer.

Chris is a YouTube star “She really perseveres and helps other MS'ers, and I think she really tries her best, even though she has MS. My mum is a brilliant role model.” These are the words of lovely Chris, who stole our hearts in a video for the MS Trust about how he helps his mum Carla, who lives with MS. You can watch the video on our MSTV YouTube channel: youtube.com/mstvuk.

Ships ahoy!

Inspired by their friends Spencer Bull and Mark Webb (pictured), who both live with MS, a group of 12 will be taking to the seas on 24 August to swim across the Solent for the MS Trust and Shift.ms. They have been training hard for this unique challenge which will see them riding the waves between Gosport and the Isle of Wight, which is a distance of around 2.5 to 3 miles (depending on the tide). We would like to say a big thank you and good luck to our team of Swim the Solent superstars!

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Open Door August 2019 Office number: 01462 476700 Enquiry Service: 0800 032 38 39 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

Do beta interferons have an effect on life expectancy?

Clinical trials of the beta interferons have shown that they are moderately effective at reducing relapse rates. But these clinical trials which ran for two years can’t tell us the impact of taking a beta interferon over longer time frames. This study aimed to find out whether taking one of the beta interferons might have an effect on life expectancy by following a large group of people with relapsing remitting MS for a longer period of time.

Authors Kingwell E, Leray E, Zhu F, et al.

Title Multiple sclerosis: effect of beta interferon treatment on survival.

Journal Brain 2019;142(5):1324-1333.

Read the summary http://tiny.cc/l4pg8y

The study Researchers looked at medical records for almost 6,000 people registered with a Canadian or a French MS clinic.

Exposure to beta interferons between 1996 (the first year beta interferons were available in both Canada and France) and 2013 was recorded for each person. Deaths due to any cause were identified. Deaths due to MS where also determined by checking death certificates for a number of contributing causes linked to severe MS, such as pneumonia or kidney infection. The researchers matched each person who had died with people who had survived and compared beta interferon exposure for the two groups.

The results During the study period, there were 742 deaths due to any cause (average age at death 61 years), 489 of which (66%) were considered to be MS-related (average age at death 59 years). During an average of 11 years of follow up, beta interferons were taken by 32% of the participants for at least six months.

Those who had taken beta interferons

for three years or more had a 32% lower risk of all cause deaths and a 29% lower risk of MS-related deaths than those who had not taken beta interferons.

Starting one of the beta interferons late (more than five years after onset of MS or later than 40 years old) did not reduce the benefit on life expectancy. The same benefit was also seen for people living in either Canada or France, and for both men and women.

What does it mean?

The results suggest that people taking a beta interferon drug for more than three years were more likely to live longer than those who took one for a shorter time or who didn't take one at all.

Other studies have found similar results. Almost all of the people who took part in one of the early beta interferon clinical trials have been monitored in a long term follow-up.

At 21 years after the start of the study, 81 deaths were recorded. Those who were randomly assigned to take beta interferon were found to have a 46% lower risk of death. This finding has been interpreted with caution because of the small numbers involved in this

study (366 participants); it’s possible that improved life expectancy was due to chance alone.

The current study has the benefit of including nearly 6,000 people with relapsing remitting MS, followed for up to 18 years and from two separate geographical regions. However, even with this large group of people and long follow-up, it is not possible to rule out other factors, such as differences in smoking or other life style factors, which could have affected survival.

The researchers would like to use their approach to investigate whether improved life expectancy extends to other, more effective, disease modifying drugs. As some of these drugs have only become available quite recently, it may be some years before sufficient numbers of people have been taking For the newer DMDs information over longer on all the DMDs, time scales to visit allow us to look msdecisions.org. at this.

uk

Open Door August 2019 Office number: 01462 476700 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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R E S E A RC H UP DATE

Remyelination – what progress has been made?

A recent review outlines progress made in understanding the biology of remyelination, what goes wrong in MS, some of the research problems that need to be tackled and the prospect for treatments in the not-toodistant future.

Authors Cunniffe N, Coles A. Title Promoting remyelination in multiple sclerosis.

Journal Journal of Neurology 2019 Jun 12. [Epub ahead of print] Read the summary https://bit.ly/2XgCv7l

How does remyelination work and what goes wrong?

An important first step is understanding how remyelination works in health. The picture that is emerging is a complex interaction between different cell types and chemicals produced by the cells.

In the brain and spinal cord cells called oligodendrocytes produce myelin which they wrap around nerve axons, like a Swiss roll. An important focus of research has been understanding how immature oligodendrocytes (oligodendrocyte progenitor cells, OPCs) go through several stages before they can produce new myelin.

Large numbers of OPCs are seen in demyelinated MS lesions, so one theory is that remyelination fails because these immature cells are unable to mature into oligodendrocytes capable of making myelin. However, very recent research using brain tissue from people with MS suggests that remyelination is mostly carried out by pre-existing and not newly matured oligodendrocytes. Another recent study found several types of mature oligodendrocytes and that the ratio of these subtypes in people with MS differs from healthy people.

The debris left over from damage to myelin has been shown to inhibit remyelination so its clearance by other cell types is another area of research.

Remyelination reduces with age

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and disease duration. This may have important consequences for designing clinical trials and deciding when in the course of MS remyelination treatments would be most effective.

Remyelination clinical trials The good news is that research is beginning to identify potential treatments which are being tested in clinical trials.

A protein called Lingo-1 prevents OPCs developing into functioning oligodendrocytes. Opicinumab blocks the action of Lingo-1, allowing OPCs to mature. In a phase II study of people diagnosed with optic neuritis, opicinumab improved transmission of nerve impulses in the optic nerve, suggesting that remyelination had occurred. A second phase II study used a combination of Avonex and opicinumab but found neither an improvement in disability nor a slowdown in progression. These results were disappointing, but further analysis suggested some improvement. It is now being tested in a further study as an addon to DMDs in relapsing MS. Another route to discovering candidates is through testing large numbers of molecules in laboratory models of OPC development. This approach identified clemastine, a drug used to treat allergies.

In a phase II clinical trial in 50 participants with relapsing MS and evidence of long term damage to the optic nerve, clemastine treatment resulted in a small

improvement in the speed at which nerve impulses passed along the optic nerve. There was a slight improvement in vision, but too small to be conclusive.

The researchers were unable to show the repair on MRI scans and other measures of myelin. Clemastine is now being tested in a second phase II trial in people with acute optic neuritis. The review lists further clinical trials of potential treatments, including bexarotene, biotin and cellbased therapies, which have been completed or are underway.

What does it mean?

A good deal of progress has already been made, although there is still much to be done. The authors summarise by identifying questions that need to be answered in order to build on this work: • How well does remyelination studied in animals match the process in people with MS? • What is the best way to measure remyelination in clinical studies?

• When would be the best time to start a remyelinating treatment?

• Which is the most appropriate group of people with MS for testing remyelinating treatments?

For more information, visit mstrust.org. uk/a-z/nervecells-neurons

Open Door August 2019 Office number: 01462 476700 Enquiry Service: 0800 032 38 39 mstrust.org.uk info@mstrust.org.uk

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RESEA RC H U P DAT E

Microaggressions at work; more than just hurt feelings There is growing evidence that microaggressions (subtle discriminatory actions) are common in the workplace but little is known about the experience of people with disabilities. In what they believe to be the first study of its kind, US researchers investigated microaggressions experienced by people with MS at work.

Authors Lee EJ, Ditchman N, Thomas J, Tsen J. Title Microaggressions experienced by people with multiple sclerosis in the workplace: An exploratory study using Sue's taxonomy.

Journal Rehabilitation Psychology 2019 May;64(2):179-193.

Read the summary http://tiny.cc/rbrg8y

The study 29 people with MS from across the States took part in focus groups, answering questions designed to draw out episodes of microaggressions, how this affected working life and the strategies used to cope with difficulties. Conversations were recorded and analysed by researchers in collaboration with people with MS.

The results Participants were encouraged to categorise microaggressions into three subtypes, although in practice there was considerable overlap between them: • Microassaults: most likely to be viewed as direct discrimination, these are often conscious statements or actions intended to hurt a person (eg a derogatory comment such as “Well c’mon, spit it out!” while trying to explain something to a colleague) • Microinsults: unconscious remarks or actions that convey rudeness or insensitivity (eg complimenting you in a way that felt offensive – “You look so well for someone with MS”) • Microinvalidations: typically unconscious and include comments and behaviours that discount, exclude, negate the thoughts, feelings or lived experience of a

person (eg after explaining the impact of seen as a good way to find out about MS fatigue – “Oh I know, I get really tired resources available to support people too”). working with MS and share strategies All of the participants reported for explaining MS to colleagues and experiencing microaggressions in supervisors. Other coping strategies the workplace, which they primarily included meditation, exercise, positive attributed to others’ lack of knowledge self-talk and support from family or misperceptions about MS. The vast members. majority saw these experiences What does it mean? as discriminatory and negative, increasing their Information The results from this study level of stress, damaging on working with highlight the negative impact working relationships MS can be found at that workplace microaggressions and undermining their mstrust.org.uk/ can have on job satisfaction and confidence in their work work security. The ambiguous nature performance and ability of microaggressions means that to contribute. Participants people often doubt their reactions also described struggling and are less likely to report incidents to to make a decision about disclosing MS managers, limiting the opportunities to due to concerns about possible negative change attitudes. The researchers make a consequences and feeling that it was a number of recommendations for tackling challenge to educate co-workers and microaggressions, including creating a supervisors about MS symptoms and more positive and inclusive workplace discuss reasonable adjustments that climate through organisational change they needed. Relatively few participants and working directly with people with described positive experiences following MS to help them improve their selfdisclosure of their MS, although the confidence and skills to communicate the researchers suggest this might have been impact of MS and negotiate reasonable due in part to the nature of the focus adjustments. group questions.

Involvement in support groups was the most popular coping strategy and was

Open Door August 2019 Office number: 01462 476700 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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T EC H N O LO GY

Why I've made a robot for people with MS Josh Astley has used his own experience of an MS diagnosis to design a companion robot for people living with primary progressive MS. Here, the University of Sheffield student tells us more about the inspiration behind M.A.R.C (Medically Aided Robotic Companion) the panda.

When I first experienced the paroxysmal symptom of Lhermitte’s, I had no idea what this was or what it meant moving forward. Within the month, I was in hospital with a multitude of other neurological symptoms. This was very frustrating and confusing, I had never experienced most of these symptoms before and had no idea about what was to follow. After lots of tests and conversations with what seemed like 500 different doctors I was diagnosed as having clinically isolated syndrome.

I spent the following year undergoing even more tests, constantly being in and out of hospital before finally being referred to an MS clinic.

Coincidentally, this happened to be the final year of my Mechanical Engineering degree at the University of Sheffield. I was struggling to succeed and started to feel increasingly isolated. I still feel this way sometimes, as we all do, but spending time in an MS clinic and having the support of my supervisor has

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helped me to find some solace.

For my final dissertation I needed to pick a topic. I initially signed up for a title before all this happened and now testing the failure of steel seemed unimportant. Before all of this,

M.A.R.C the panda I had never met anyone with MS, and engineering in the medical field hadn’t particularly sparked my interest (I was employed by a defence company when all this started). I noticed that, in general,

Josh Astley

advances in medical engineering had been very generic and often involved the diagnosis of conditions. However, medicine isn’t only about diagnosis, it is about caring for people. Providing care is the very reason why people are in MS clinics. How we care for the elderly, for those with long-term conditions and for those with mental health problems remains the domain of nurses, carers and family members. For the most part, this is a good thing as it allows someone to interact with the people closest to them, but what happens if this help isn’t available? Care is expensive, it requires paying someone a year-round wage or if you’re lucky, having a family member that can dedicate most of their life to this cause. This is when I heard about Paro, a companion robot in the shape of a seal given to people with dementia.

It has been shown to produce positive results, but the most shocking thing for me was the price. Paro is around £8,000.

I am sure if you have that money it is a

Open Door August 2019 Office number: 01462 476700 Enquiry Service: 0800 032 38 39 mstrust.org.uk info@mstrust.org.uk

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very valuable asset, however for the majority of people this is and creators to design further projects, ask questions and raise unattainable. I had a project. I spoke to my supervisor and we engagement of MS and its challenges. ended up settling on a title, ‘Design and Build a Companion In the coming years I am sure that companion robots will Robot for aid in Primary Progressive MS Care’. become an ever more present part of the medical treatment M.A.R.C stands for the ‘Medically Aided Robotic process across the board. This specific project will be Companion’ and he is a panda. The robot continued by some interested students next year as How does can automatically call or send a message to their final dissertation. Their project will start where technology help with a doctor, measure and record heart rate mine left off and aim to develop the ideas further. over time and, just for fun, it wags its tail For me, when I got my diagnosis I knew nothing your MS? Email when you press a button that says ‘Make about MS, it sounded scary. By raising awareness mystory@mstrust.org.uk me happy’. M.A.R.C is not a commercially and engagement we can create medical aids that to share your expriences. available companion robot (I am only an work with people with MS, developed with insight undergraduate engineer!), but the premise and compassion and making what can be scary is sound. M.A.R.C aims to promote discussion news into slightly less scary news. of companion robots more generally, but it also So, what next for me? I am moving on to postgraduate shows how the medical engineering field can help study in machine learning with a particular focus on using those living with the most common neurological machine learning in medical imaging. I am interested now, both disorder affecting young adults in the UK. in the medical field and its relationship to technology. Partly Hopefully, the success of projects like this can help promote because of my personal experiences, but also because of its ground level opensource development. The reason the project potential benefit on individuals and society as a whole. is available for opensource development is to allow developers

It's all about the tech!

Your Views

There’s a plethora of brilliant gadgets and gizmos out there to help people deal with the challenges MS can bring. From apps and computer games to virtual assistants and robotic vacuum cleaners! We asked some of you to share your tech reccomendations...

"Medisafe app on my phone, reminds me what meds to take and what time! Phone rattles like a pill bottle when it's time" "The Symtrac app allows you to log symptoms and set reminders for meds and appointments and other options too" "I use a robot vacuum, one less job to do around the house, a real help when the fatigue kicks in"

"I use Echo Dot for medication reminders, shopping lists and to-do lists"

"I have plugs, lights and heating that can be voice controlled via the Amazon Echo"

" I use dragon software (speech recognition) to help with typing" "The iPhone app called Round reminds me to take tablets, another app called Cleo is brilliant for people with MS"

Open Door August 2019 Office number: 01462 476700 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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YO U R S TO RIES

Healthy hobbies MS doesn’t need to mean giving up the things that make you who you are. Whether it’s picking up a paintbrush or baking a cake; digging out your old sewing machine or playing an instrument, taking up a new hobby, or rediscovering an old one, can help you retain a sense of self following an MS diagnosis.

Here, four people with MS tell us about their respective passions.

Anna’s story “I’m not Anna, that woman with MS. I’m Anna who made the skirt she’s wearing” I was diagnosed with relapsing remitting MS in 2012. Shortly after my diagnosis I suffered a relapse that caused numbness in my right hand. I lost control of my fingers and even holding cutlery became impossible. I thought that my life as a textile maker was over.

When I was a child my mum kept her sewing things in my bedroom and I remember delving into the drawer to take scraps of fabric to create blankets for my dolls. Meanwhile Nan would make me doll’s clothes. She was from the make-do-and-mend generation and every little scrap would become something beautiful at her hands.

Following school I studied Woven Textile Design. I loved learning a traditional craft. I graduated in 2007, and without equipment to be able to weave, I taught myself how to sew.

When I lost the mobility in my hand the thing that I loved the most became an impossible struggle. I persevered and adapted how I worked. Hand sewing was out of the question so I took up machine embroidery. As time has gone on and my mobility and coordination has improved, thanks to the practice my hand gets from manipulating cloth and threading needles, I have gained so much confidence, in my craft and in myself.

To sew is such a joyous thing to do, needs little space and is done sat down, concentrating, being mindful and having a focus.

I believe that being creative allows you to learn and reflect. If you have a spark of interest - just try it.

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Textiles are forgiving. You can get tools to help thread your needle, frames on stands with lights and magnifiers and if it doesn’t work out how you’d planned, there’s nobody to judge you.

To me textiles is about identity. I’m not Anna, that woman with MS. I’m Anna who made the skirt she’s wearing. It connects me with life before MS, to my mum and my nan - my biggest influences - and it brings me closer to the people I love the most when I make them things. It’s my passion and it keeps me going.

Just one stitch is progress.

Mary’s story “I leave each session uplifted and glad to be alive” I was diagnosed with secondary progressive MS in January 2014.

This was quite a shock, particularly as I wasn't aware that I had had relapsing remitting for the past 30 years or so! Once I had gone through the ‘grieving’ process I just got on with life. I was working full-time at this point. I can walk with a stick for a limited time, about 15-20 minutes.

A flyer came through my letterbox advertising Rock Choir . This sounded like a fun thing to do but unfortunately the local session was held on a Tuesday morning. Work commitments made this session impossible, and the next nearest was held in the evening. This was no good to me as by the end of the day I was knackered!

I retired in June 2016 and decided to have a Rock Choir taster session. There are no auditions and no need to read music. Just as well as I can only just hold a tune!

I entered a room full of chattering, laughing people, mostly female, although there were a few men. I was welcomed, helped

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to find which harmony part to try, and the session started. I was seated next to Wendy who chatted away to me, helped me by prompting what and where I should be singing. They were rehearsing for a performance at Nottingham Concert hall which involved six songs. The sound was amazing - that was it - I was hooked.

I have now been a member for three years and it has been the best thing I have ever done. I was accepted as me, made so many friends and have had so many amazing experiences. I have performed (performing is optional) with the choir at several local venues, the first being at Kedleston Hall for a Christmas fair. I was nervous but everyone was encouraging and supportive. It was magical. I have been part of a flash-mob, which my grandsons thought was "awesome" and, with the support of other Rockies during the journey to London, I have recorded at Abbey Road.

Rock Choir has gained me new friends, helped enormously with my confidence, my posture and my breathing. Most importantly I leave each session uplifted and glad to be alive. At each session I can forget that I have MS and just be me.

I would encourage anyone to give it a go - what have you got to lose!

Ben's story “I love the freedom of riding a bike” I received my diagnosis of relapsing remitting MS in May 2017 at 28, after five years of symptoms. I used to ride motorbikes from the age of 15 to 19, but then stopped because I couldn’t afford it, especially once I became a dad. I had a bad relapse towards the end of 2017 where I lost the feeling from my waist down and that really scared me. It got me thinking about all the things I hadn’t yet done in my life and I was determined that no matter what, I would get my licence.

Once I had come out of my relapse I went to my local training school (Kent Motorcycle Rider Training) and booked my training in, advising them of my MS and how it affects me. One of my main battles is fatigue and even though riding the bike brings my body back alive, the training was a lot to take in. But my instructors were great and allowed me to take a break whenever I needed to and gave me lots of confidence. I took my test and passed with a couple of minors. I was on the road.

The thing I love most about riding a motorbike is the feeling of freedom and normality. A lot of times in my life I am looked at differently when people hear about my MS. When I have my helmet on nobody knows who I am or what is going on with my life and I am just free, whether I am doing seven or 70mph. I would

100% encourage others to try it. I was once told “if you don’t use it you’ll lose it” and I am not having my freedom taken from me.

Helena's story “I like escaping reality by baking” Two of my biggest symptoms are fatigue and concentration issues.

You know that thing when you walk in to a room and forget why you are there? Well I do this time and time again. I have started to write everything down. My husband often laughs at my old fashioned note keeping, asking me why I won’t do it on my phone. But I find if I can’t see it in front of me, it ceases to exist.

So I write my to-do lists, I pace myself and I try to take one day at a time.

I have always enjoyed baking, but in the last six years or so I have started to push myself in what I do, trying new things, making elaborate decorations and baking things that I have never even heard of before. You can probably blame The Great British Bake Off for a lot of it, watching that show and the amazing people on it made me want to make amazing-tasting showstopper cakes as well!

People often ask me how I find the time and energy to bake. I guess the secret is that I love doing it and I really find it helps me deal with life. If the day has been particularly stressful and hard, I like escaping reality by baking, as in order to concentrate on what I am doing, I have to let all other thoughts go. Sometimes I follow a recipe that I have found, sometimes I have to modify it, and I often sketch up a picture of what I’d like to try and achieve.

Sometimes baking takes it out of me, then I have to give it a rest. Either I get a chair and sit down whilst I do it, or I simply put the dough away to continue another time. If I am doing a big cake, I bake the sponge, stick it in the freezer and then do the decorating part another day. Doing it all in one go very rarely works because of the fatigue. But again, planning it out this way and having a schedule about what I will do on which day is probably very good for my ‘brain exercise’.

My advice for anyone with MS is to find a hobby that they like, adapt it so that it suits you and enjoy Read more pushing that brain a bit extra.

stories about life with MS on our website, at mstrust.org.uk/yourstories

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TA L K I N G P O I N T S

Ocrevus: what you need to know Back in May, NICE announced that it had approved Ocrevus (ocrelizumab) for NHS treatment of early, inflammatory primary progressive MS. As the first ever treatment for progressive MS, this was a landmark decision, but one which also raises lots of questions about who will be able to access the drug and how. Janice from our Information Team sheds some light.

What is Ocrevus?

the decision to reject Ocrevus on hold to allow time for more talks between NICE, NHS England and Roche. As a result, an Ocrevus (also known as ocrelizumab) slows the worsening of agreement was reached to provide Ocrevus at a lower price disability in early, inflammatory primary progressive MS (PPMS). for PPMS, bringing it within the range that NICE considers cost In a large clinical trial, fewer people with PPMS taking Ocrevus effective. had an increase in disability; people taking Ocrevus were 24% less likely to have an increase in their disability than those taking Why is this such a landmark decision? placebo. In more real-life terms, this is equivalent to potentially Ocrevus is the first drug which has been shown to reduce disability delaying the need for a wheelchair by seven in clinical trials of progressive MS and is the years for people with early, inflammatory first drug to be approved for NHS treatment "I can’t tell you how PPMS. of primary progressive MS. The introduction exciting it is to have You take Ocrevus as an intravenous of a treatment for PPMS may also generate a the first drug to treat PPMS infusion (drip). The first dose is given as greater focus on services for progressive MS approved for use within the NHS. two separate infusions, two weeks apart. and a more proactive approach to managing Control of my deterioration will give After that, you have one infusion every six PPMS which could ultimately benefit a much me optimism about a future I hadn’t months. The most common side effects wider group of people with PPMS than just include infusion-related reactions such dared dream about" those who are eligible for Ocrevus. as headache, rashes, fever and nausea.

Yvonne Pettigrew, diagnosed Other side effects include infections such with primary progressive What about Wales, Northern Ireland as coughs, colds, chest infections and MS and Scotland? herpes virus infections (such as cold sores or This decision applies initially to England, but shingles).

Roche is working with the NHS in Wales and Ocrevus works by targeting and killing Northern Ireland and the Scottish Medicines a type of white blood cell called a B cell. B Consortium to make Ocrevus available cells are involved in the MS immune attack which damages the throughout the UK. We’ll keep you updated as soon as we have myelin coating around nerve cells in the brain and spinal cord. further news.

Reducing the number of B cells leads to less inflammation and I have primary progressive MS, how do I know if I will less damage to myelin. be eligible?

Ocrevus has been approved as an NHS treatment for relapsing You may be eligible for Ocrevus if you have early, inflammatory remitting MS since 2018.

PPMS. Early is defined by how long you have had PPMS and how it What’s the background? How come Ocrevus was has affected you. You may be eligible if it is 15 years or less since rejected and then approved? your first symptoms of PPMS and if you are able to walk at least Last year, NICE completed a review of Ocrevus for PPMS and, using 20 metres, with or without walking aids (equivalent to EDSS 6.5). the price already agreed for RRMS, concluded that the benefits Inflammatory means that MRI scans show signs of MS activity gained did not represent value for money to the NHS. Drug which appears as new or enlarging lesions when two MRI scans manufacturer Roche proposed a reduced price for Ocrevus for are compared. You’ll probably know if you meet the early criteria, PPMS but this was initially rejected. but it’s less likely that you’ll know if your MS is inflammatory Following pressure from the whole MS community, NICE put because, once diagnosed, MRI scans are not routinely carried out 14

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for people with PPMS. There are no age restrictions on starting Ocrevus.

We don’t know exactly how many people will meet these criteria but at a rough estimate it is thought to be around a quarter (25%) of the 10,000 people with PPMS in the UK.

How will I be able to access Ocrevus?

In principle, NHS services in England have three months to prepare before they start offering the treatment to people with PPMS. But in practice it may take longer. The first step is to contact your MS team and ask how they will be assessing people with PPMS for starting treatment with Ocrevus. If you have an annual appointment with your neurologist, this would be a good opportunity to ask for more information. If you are no longer in contact with a neurologist, you should ask your GP to refer you to the nearest MS team. You can find your nearest MS team on the MS Trust website - the map of MS services shows hospitals with MS services (mstrust.org.uk/map). Alternatively, call our enquiry service on 0800 032 3839.

Are there any other drugs for progressive MS? At the moment, Ocrevus is the only treatment licensed and approved for NHS use which can modify the course of progressive MS. A wide range of drug treatments and other therapies can help to manage the symptoms of progressive MS; following a balanced diet and staying as active as possible can also help you remain as healthy as possible. A number of drugs are currently in the pipeline for progressive MS: Ocrevus for more advanced PPMS ORATORIO-HAND is a new clinical trial designed to test Ocrevus in people with more advanced disability including those who need to use a wheelchair and are up to 65 years old. The study will focus on hand and arm function, an aspect of MS which has been overlooked in previous clinical trials but is vital for maintaining independence. Detailed planning for the study is still underway

but it is anticipated that recruitment will start later this year, with study centres worldwide, including the UK. Siponimod for SPMS In a large clinical trial, siponimod reduced worsening of disability by 21% compared to placebo. Siponimod is now being assessed for licensing by the European Medicines Agency; if successful it will then be reviewed by NICE. Simvastatin for SPMS Results from a small clinical trial showed that simvastatin, widely used to reduce blood levels of cholesterol, reduced the loss of brain volume compared to placebo. The effect of simvastatin on disability worsening is now being evaluated in a large study which is currently recruiting participants from around the UK. For more information and to register interest in taking part, visit ms-stat2.info.

Biotin for PPMS and SPMS A highly concentrated formulation of biotin is being tested for an improvement in disability in people with PPMS and SPMS. The study is fully recruited and expected to finish later this year.

Ibudilast for PPMS and SPMS Ibudilast is used in Japan and Korea to treat asthma and some complications of strokes. Laboratory studies suggested that it might have a neuroprotective effect, reducing nerve and myelin damage. In small, early clinical trials in progressive MS, it reduced the loss of brain volume and slowed down worsening of disability.

Further analysis suggested that it was Find most effective for people with SPMS who are not having relapses but out more this will need to be confirmed in about the drugs in larger clinical trials.

development for MS at mstrust.org.uk/drugsdevelopment

So, what exactly does the drug development process involve?

The development of new drugs is a long and difficult process. Fewer than one or two compounds in 10,000 tested actually make it through to being licensed treatments with many being rejected on safety, efficacy or quality grounds. On average it will take 10-15 years for a new compound to get from the test-tube into the medicine cabinet. It is important to remember that not all the treatments currently being developed or tested will receive a licence or be approved for use in the NHS.

Phase I: The first step in testing a new drug in humans is to determine the safety of single doses in a small number of healthy volunteers.

Phase II: If the treatment proves to be safe, studies begin to determine the effectiveness of the drug in people with the condition to be treated.

Phase III: If a drug shows effectiveness, a larger study is conducted in hundreds of people.

Licensing: Data from all of these three phases is presented to the regulatory authorities.

NHS appraisal: Once a new medicine has been licensed, drugs may need to be appraised by NICE for England and Wales and Scottish Medicines Consortium for Scotland.

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FO CU S ON

Using orthoses to improve your walking Many people with MS experience walking difficulties. For some this might be weakness in the leg, for others foot drop and stumbling. Here orthotist, Emma Davidson, explains how orthotic devices – such as braces and splints – can help to manage these problems, enabling people to maintain their mobility and keep doing the activities they enjoy most.

What is an orthotist?

flexible to encourage movement in certain directions. The AFOs we prescribe can be an off-the-shelf product or may be completely custom-made for the person, it all depends on the clinical need.

Insoles Like AFOs, insoles can be an off-the-shelf or What are orthoses?

Orthoses custom-made device. Prescription insoles can An orthosis is any brace worn on the body, can improve be made from a cast of the person’s foot and are including insoles, ankle and knee braces, inserted into the shoe. They can be used to correct mobility, eliminate gait spinal jackets and wrist supports. problems such as abnormal walking patterns, deviations, reduce the Orthoses differ from prostheses because the reduce pain or relieve pressure on certain areas of people we treat haven’t lost a limb, but require risk of falls, reduce pain, the foot. external support to a part of their body which and prevent the skin Resting splints has reduced function.

Resting splints may also be pressure sores Orthoses can help people with MS in a used. Quite often people number of ways; they can improve mobility, with MS have problems eliminate gait deviations, reduce the risk with muscle contractures of falls, reduce pain and prevent the risk of or increased muscle tone developing skin pressure sores. that causes tightness of joints. As part Orthotic devices of contracture management you might Ankle-foot orthosis (AFO) have Botox injections and a stretching An ankle-foot orthosis, or AFO, is programme, but you can also be given a resting brace from probably the most commonly used orthotics, for example for your hand or wrist, to help rest or orthotic device among people with MS. support it in a better position.

An AFO is any brace that covers the foot Positional braces can be sheepskin lined and are moulded to and ankle area. the best position you can get your wrist and hand into. They’re The materials used differ depending strapped on with Velcro and worn overnight to provide a passive on the support needed. They can be stretch. completely rigid to immobilise the ankle or they may be more There are similar braces for the ankle. People who have Achilles An orthotist provides a range of aids to correct problems with people’s nerves, muscles or bones. We treat a wide range of conditions including MS, diabetes, and arthritis, as well as sports injuries and trauma.

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tendon contractures or tightness round the ankle can wear a positional splint at night to create a stretch.

Can AFOs be used to treat foot drop?

An ankle-foot orthosis may be used for foot drop, but sometimes it’s a more complex picture.

Often in MS, people don’t have drop foot or a weakness of their ankle dorsiflexors (the muscles at the front of your ankle) in isolation. There’s often other subtle symptoms involved – such as other weakness, balance issues, changes in muscle tone, fatigue or issues with sensation – but it all gets clumped together under foot drop because the foot catching on the floor is what is seen clinically.

It’s essential to establish what’s causing the drop foot. An AFO would be the right treatment option for ankle weakness, but if it’s caused by weakness further up, it may not be appropriate.

How visible are they?

Most orthoses are designed to be worn next to the skin, under your clothes – so they’re discreet from that point of view.

However, the greater the functional loss, the more support is needed, which may require a bulkier orthotic, so they’re not always invisible.

Getting used to wearing an orthosis It’s a gradual process over a few weeks to get used to any type of orthosis. Your orthotist should give you advice on a gradual breaking in period. They will give you wear and care advice around checking your skin for any abrasions or pressure points, the most suitable type of socks and shoes to wear, and whether you need to wear a barrier (like a legging) next to your skin.

An orthosis doesn’t necessarily have to be worn all the time – it depends on the functional loss, when you need the support and whether it’s a functional day splint or a night resting splint.

Some people wear an orthosis morning until night. Others come to us because they’re struggling with a specific activity (such as running) so the brace is only worn during that activity. If you have an orthosis for walking, then you’d take it off at night when you’re resting.

Stigma There’s still a stigma attached to braces. People think they’ll be a heavy, archaic device and don’t always see them in a positive way.

A lot of people with MS who I’ve treated have benefited from

Emma Davidson is a Clinical Specialist Orthotist working at Buchanan Orthotics in Glasgow. The clinic provides the orthotics service across the West of Scotland, and treats people on the NHS and privately. Emma also runs a monthly walking clinic at Revive MS Support, the MS Therapy Centre in Glasgow.

their orthosis. A rewarding part of the job is enabling people to continue to do the things and hobbies they enjoy. People then start to see their orthosis as a positive addition to their lifestyle, rather than a negative one.

Early intervention Early intervention is important in orthotics. The earlier you go, the more options are available. Once you’ve got very established gait deviations, tightness in certain joints or established weakness, the choices are narrowed. Early assessment means there’s a wider variety of devices that might be suitable for you. Don’t be afraid to go to orthotics – it’s not a scary place!

Who covers the cost?

All NHS health boards and trusts have an orthotic service which supply a wide range of orthoses, both stock and custom-made, on the NHS. Some more high-end devices are only available privately, such as custom-made carbon fibre braces. Carbon fibre is thinner, lighter and more durable than plastic, but it’s not as cost effective for the NHS.

Getting a referral Some NHS departments accept self-referrals, but it varies depending on the area. All orthotics departments accept GP referrals, or a referral from a neurologist, MS nurse, physio or occupational therapist.

Walking difficulties in MS Many people with MS experience difficulties with walking.

This might include tripping and stumbling, weakness of the leg muscles and unsteadiness. These problems happen in MS when messages from the brain to the legs and feet are impaired because of damage to the nerves. This makes coordinating the muscle movements required for walking more difficult. If you start to notice difficulties with your walking, speak to a health professional. There are lots of interventions that can help including physiotherapy, walking aids and the orthotic devices mentioned here.

You can find more information on walking difficulties at mstrust.org.uk/a-z/ walking-difficulties

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A S K T H E E X PERT

Cognitive problems It’s estimated that around half of people with MS will experience cognitive problems during their lifetime. Difficulties with memory, word finding, information processing, concentration and planning all fall under cognitive problems. We spoke to Senior Clinical Psychologist, Dr Eleanor Ansell to hear some of her strategies for managing these problems in everyday life.

Q

Do you have any practical tips for dealing with memory problems?

Eleanor says: Everyday memory problems can generally be divided into two areas: remembering information and remembering to do something. There are a variety of strategies that can help with both of these areas.

Increasing strength of the memory If you’ve got information you need to remember, the more you repeat it the better. Repetition will increase the connections to that memory and make it much stronger. Also if you can draw it, speak it and write it, then you’ve got three different pathways into that memory and that’s going to make the memory trace much stronger.

Being organised If you can organise and structure the information you need to remember it’s going to be easier. For example, imagine that you have lots of shopping you need to buy. First of all writing it down is going to be helpful, but if you can structure that list into different types of shopping (eg fresh fruit and vegetables, meat, household goods, toiletries) by clumping them together it’s going to be simpler for you to recall them and think about whether you’ve missed anything off the list. It’s also going to be quicker to find them in the shop!

Other things that will help are keeping important items (like your house keys) in regular places so they’re easy to find and making sure you write your appointments and other important events in your diary straightaway. This will take the strain off your memory.

Establishing a routine Routine is a big aid in terms of your memory. If you can get in the

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For more information on thinking and memory problems in MS, visit mstrust.org.uk/ thinking

routine of checking your diary regularly to see what you’ve got planned that can help you remember what you’ve got lined up. If you’ve got activities or tasks that you keep missing because you forget them, turn them into regular activities (eg every Thursday at 10am you go for a coffee with your friend or every Friday morning you empty the bins) and they will become much easier to remember.

Setting prompts and reminders Using diaries, calendars, alarms, reminders and post-it notes can help take the strain off your memory. Smartphones are great because you can set reminders, make notes and dictate into them as well. Using the camera on your phone can be useful too if there’s something you need to remember. You could take a picture of your appointment letters, for instance, which takes the pressure off you remembering to take the letters with you to your appointments.

Q

My cognitive problems make me feel quite anxious when talking to people. How can I cope better in these situations?

Eleanor says: If you feel anxious about your memory problems in social situations the temptation is to avoid them altogether. This can make the problem worse because anxiety can start to build up and you become more fearful of those situations. You also don’t get a chance to develop coping strategies.

My first recommendation is to practise. This will help you feel more at ease in these situations. We know that anxiety affects our memory so when you first start doing it it’s probably going to be more difficult because you’ll be anxious, but with time it will get easier.

If your mind does go blank or you’ve lost your train of thought,

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take a deep breath, give yourself time and then respond. Often you’re much more aware of these difficulties than the person you’re talking to, who may not even notice, so try not to worry too much about it.

When you become very anxious, you tend to focus inwards and stop paying attention to the conversation.

Q

Do you have any tips for someone having problems finding words?

Eleanor says: Word finding difficulties are common in MS, and in the general population. They’re often made worse by stress and anxiety. The more we try to find the word, the more pressure we put on ourselves, and the more elusive the word becomes.

My advice is to take the pressure off and relax about it. You could say, “I can’t think of that word at the moment, it’ll come back to me”. Often it’ll pop back into your head later.

Sometimes not getting so fixated on that word and finding another one instead that will equally do is a good technique.

Q

When you notice you’re becoming very introverted, try to extend your attention and focus outwards.

Concentrate on what the other person’s saying, what they look like, what’s going on around you. That will help you normalise it and reduce the anxiety.

Describing the word you’re talking about is another option, eg olive – small, black things found on pizzas.

That may help the word pop back into your head or alternatively the other person might understand what word you’re looking for so you can continue the conversation.

Another technique is to go through the alphabet in your head whilst trying to think of the word.

If you’re finding that your word finding difficulties are impacting you significantly, then ask to be referred to a speech and language therapist.

Q

What’s the best way to deal with cognitive problems at work?

Eleanor says: This can be a tricky situation. It will depend on your relationship with your employer. As a rule of thumb, if you can be open about the difficulties you’re having and offer up solutions, then that can open up the dialogue with your employer and give them an idea of how they can support you. Think about how you approach the topic with your employer.

Rather than saying, “I’m having memory problems, I’m struggling with work”, you could approach it slightly differently by saying, “As you know I have MS, I’ve noticed that I’m having some memory problems. My memory’s generally okay but I’m really struggling with remembering everything that’s discussed during meetings. I wonder if we could make the minutes from meetings more detailed so that I can refer back to them?” This sort of approach will help because you’re suggesting a solution.

Will my cog fog get worse over time? Can I do anything to stop it from getting worse?

Eleanor says: It’s difficult to say whether your brain fog is likely to get worse over time because everyone’s MS will progress differently.

However there are things that can make brain fog worse and things that can make it better; addressing these factors can be helpful.

• Developing good sleep hygiene techniques can be useful, such as having a warm bath in the evening and avoiding electronic devices before bed.

• Make sure you’re managing your fatigue by pacing yourself, allowing yourself time to relax and getting enough sleep.

• Working with your MS team to manage your pain effectively can have a positive effect on your cog fog.

• Anxiety and depression affect the brain’s function and can make it feel harder to think clearly. Take care of your mental health and your thinking should become clearer.

• Drinking too much alcohol can affect your sleep pattern and quality. This will have a knock-on effect on your memory.

• Taking steps to improve your diet and increase your activity levels will help you to stay more alert and minimise your cog fog.

Dr Eleanor Ansell is a clinical psychologist specialising in neuropsychology. She works at the West Hertfordshire Community Neuro Rehab Service.

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G E T I N VOLVED

School's out!

The MS Trust has launched a new awareness pack to help teachers and pupils raise awareness of MS in their schools and dispel some common myths and misunderstandings around the condition. MS Trust supporter Jenna Chudasama teaches at a secondary school in Leicester and recently used the pack to deliver an assembly to students about her own MS experience. “I hope that I inspired others to live their life to the full, no matter what challenges they are faced with,” Jenna tells us.

I was grateful to be given the chance to deliver assemblies at Sir Jonathan North College, the school that I teach at, to explain what it is like to live with an invisible condition.

It was a daunting experience at first as I did not know how my students would react. And, to be honest, I remember questioning my decision when, despite showing a small group of students an MRI scan and explaining how lesions work, someone still said that I looked fine and healthy. However, I was eventually able to help my students understand a little more about the condition by simplifying the terminology, using a lot of my personal experience and the experience of people in the public eye, such as the athlete Kadeena Cox. Interestingly, some of my older students came to tell me that they know someone in their family or a family friend that also lives with the condition and I hope that I was able to offer additional support to them.

I wish I could confidently say that every student in my school understands the complexities of MS, but I am sure a few still struggle to understand that MS can affect people in so many different ways. Having said that, I do believe that students have a greater understanding that illnesses can be invisible. I also hope that they

have been encouraged to open up about illnesses in general, similar to how their English teacher has, to remove the stigma so often attached to being “different”.

I strongly believe that it’s important to raise awareness of invisible conditions, such as MS, in schools as students may have parents or relatives that live with something similar and it can allow them to access student-friendly Jenna information to support what they already know. Some of our students may also be diagnosed with MS and so I wanted to be a positive example for them to remember: I live with MS, but my life is my own. I have no regrets about opening up to my school and I hope that I have inspired others to live their life to the full, no matter what challenges they are faced with.

If you would like to find out more about raising awareness in schools and to download the schools awareness pack, please visit mstrust.org.uk/schools-pack.

Calling all gamers!

Do you love Fortnite, League of Legends or Call of Duty? Whatever your game is, did you know you can do what you love AND raise money to help those living with MS? Set yourself the challenge of a 24 hour gaming marathon, get sponsored by your friends and family and help make a difference today.

The weekend of 26 and 27 October is the MS Trust’s MS: Play gaming weekend, so we want as many of you as possible to join our gaming community to raise money, stream your play and help make sure no one has to manage MS alone.

You pick the games you play, on your chosen console and play solo or get a team involved! If you can’t take part during our weekend in October, you can even pick a date that suits you.

Jump over to our website at mstrust.org.uk/msplay to find out how to sign up and how you can get your very own MS: Play t-shirt!

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Open Door August 2019 Office number: 01462 476700 Enquiry Service: 0800 032 38 39 mstrust.org.uk info@mstrust.org.uk

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“I wanted to do Get involved! something positive”

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 London to Brighton bike ride

After her MS diagnosis, Dr Susannah Hamilton was determined to turn a negative into a positive and help others access the same support she felt so grateful to have had herself. So back in June, Susannah organised a fun run to raise vital funds for the MS Trust. Over 100 people took part, and an incredible £40,000 was raised – enough to fund an MS specialist nurse for a year.

"I was diagnosed with MS last year and felt completely devastated as it came out of the blue. As I start a future of uncertainty, I have been incredibly lucky to have the support of amazing family, friends and colleagues. Without them the last year would have been extremely difficult.

I wanted to do something positive this year. I realise that many people get this diagnosis and aren’t as lucky as me. I decided to arrange a fundraising run for the MS Trust as we share a belief that nobody should manage MS alone.

It started off as a few of us running a local pre-organised 10k and spiralled out of control ending up with my family, friends and I organising a run followed by a fundraiser at my house!

The day was incredible. 100 family and friends joined me to run 5 or 10k along the river from Surbiton to Teddington, all in blue MS Trust t-shirts. The enthusiasm of those involved was infectious. This was followed by food, drink and a raffle at our house. The rain held off and we had a wonderful time with everyone leaving with smiles on their faces. At the same time my friend who couldn’t make it, as she was on board the Boudicca to mark the 75th anniversary of D-Day, raised money with veterans walking round the deck of the boat. Another friend and her family ran in Devon - all in aid of the MS Trust.

I have been completely overwhelmed by the enthusiasm, fundraising efforts and support of friends and family.

Together we have raised £40,000 for people with MS. Thank you all."

If you’d like to organise a run in your local community and help make a difference for people with MS today, please get in touch with our fundraising team on fundraising@mstrust.org.uk / 01462 476707.

Join us on the 15 September and be a part of the fantastic London to Brighton cycle ride.

Pedal 54 miles from Clapham Common to Brighton’s magnificent seafront, and reward yourself with fish and chips, a beer or an ice cream (or all three!) by the sea. See mstrust.org.uk/londontobrighton to find out more.

Christmas card volunteering Could you help in a pop up Christmas card shop in your local area for a few hours every week or every fortnight? From October to December we are looking for people to help sell cards on behalf of us and many other charities. Visit mstrust.org.uk/shopvolunteer to see a list of shops needing volunteers.

Trek for MS Looking to step out of your comfort zone and challenge yourself? From climbing the Great Wall of China or Ben Nevis, to trekking across the Sahara or the South Downs, the list of possibilities is endless! Visit mstrust.org.uk/ adventure to find your adventure of a lifetime.

Fundraise in your community There are many ways you can raise funds and help us to support people with MS. Hold a pub quiz or street collection, sell cakes or even grow a beard! Download your fundraising pack at mstrust.org.uk/getinvolved.

My Garden Party Host a summer party or autumn afternoon tea out in the (fingers crossed!) sunshine.

You could have it at home or get the office involved. Your party pack awaits at mstrust.org.uk/gardenparty.

The Big Half, London Run in the footsteps of Mo Farah across Tower Bridge and along part of the iconic London Marathon route at The Big Half on 1 March 2020. Secure your Team MS Trust place now, mstrust.org.uk/bighalf.

To find out more about supporting the work of the MS Trust call 01462 476707 or visit mstrust.org.uk/fundraising

Open Door August 2019 Office number: 01462 476700 Enquiry service: 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

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1 5 M I N U T ES WITH...

Danielle MacGillivray Danielle MacGillivray stars in our new short film, Danielle. Here she talks to us about coming to terms with her MS diagnosis, why she wanted to share her story in the film and learning to "appreciate the little things" every single day.

When were you diagnosed with MS and how did you come to terms with your diagnosis?

I was diagnosed in February 2016 after becoming paralysed down one side of my body from the chest down. This slowly moved to the other side while I was in hospital. The doctor and nurses were great and kept me very informed with each step of how they were going to help find out what was happening. They kept asking me if I had a stressful moment in my life recently, which I hadn’t, or if I had experienced anything like this before. Once they looked back on my medical record, it was almost like join the dots, and you could see a pattern of events and doctors appointments with various symptoms popping up. A lumbar puncture and MRI confirmed the diagnosis. Once I was told, at first I was in complete shock and had a little panic with a million questions flying around in my head, but after a short while, it turned to feelings of relief after realising what everything was. I wasn’t just exhausted because I was working full time, a single mum and doing regular exercise, like horserdiding and running, which I love. I wasn’t just being lazy when I felt I couldn’t get out of bed or lift the weight I knew I could the week before. Now that I knew what it was, I could start to try and adapt to my body and learn how to get the most out of it.

How has being diagnosed with MS changed your outlook on life?

Like most people, when you lose something, it makes you appreciate what you have and make the most of it while you have it. I don’t let stress be a part of my life anymore, I do my best to make sure I don’t over commit my time to anything, which means I’m not exhausted for when my son has finished school or at the weekends. It can be hard to say no to others and to things I may want to do myself, but I know my limits and refuse to allow myself to fall into the ‘trap’ of taking on more than I know my body can handle. This is working so far for my family, personal and work time. I’m managing to get everything done, but at a steadier pace.

My diagnosis has also given me an understanding of others who have illnesses that cause severe fatigue. Until you experience it, it’s impossible to understand the impact it can have on everything. I now have a huge appreciation for those who manage to keep going when they feel like giving up.

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Do you have any advice for others juggling MS and motherhood?

Where possible, take the help. Allow yourself the time to sit down.

I found it hard in the beginning to have people do things for me but after some time I realised how much it helped. It allows you more quality time with your child(ren). It’s not easy as the guilt of taking time to yourself can be hard, but in the long run it’s good for everyone that you take those rests.

Why did you want to get involved in the film?

When Gareth Warland, the director, got in touch, I really loved his views on how we could make a film without ‘feeling sorry’ for me. I wanted to raise awareness with the film and knock any stereotypical views of MS out the window.

What do you think is the importance of raising awareness of MS? It’s huge. People need to have more of an understanding and appreciation of how complex it can be for each person and raising awareness will allow this to happen. People who have no idea what MS is or how it can affect someone can’t be expected to understand it. It also takes so long to diagnose, I’m hoping raising awareness might bump it up the list of suspected illnesses when people go to their doctors with symptoms. This might reduce the disability of some who go undiagnosed for years and increase the access they have to the correct and most effective drugs.

What are your hopes for the future?

To live a happy and healthy life with my son, my partner, my family and friends. They mean the world to me. Day to day happiness and its little things can be taken for granted so I want to continue to appreciate these things every day. In the future I would love to grow my family

You can watch the film at youtube.com/ mstrust

Open Door August 2019 Office number: 01462 476700 Enquiry Service: 0800 032 38 39 mstrust.org.uk info@mstrust.org.uk

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Even the

small things add up to make a difference

Registered Charity No. 1088353

Cake

80

Sale

today

QUIZ NIGHT

80 Sponsored cycle

salon

Wedding favours

thank you

From cake sales to collections, fundraise your way and help to make a dierence today for everyone with MS visit mstrust.org.uk/ideas email fundraising@mstrust.org.uk or call 01462 476707 OD August 19 working file.indd 23

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When it comes to MS, there's no such thing as a silly question.

Whatever you want to ask, we're here for you. Contact our Enquiry Service on 0800 032 38 39 / infoteam@mstrust.org.uk Opening hours: Monday to Friday, 9am-5pm

Order MS Trust publications Our recently updated publications are listed below. You can find our full list of publications at: mstrust.org.uk/shop Managing your bladder (MS-429)

Managing your bowels (MS-430) Sex and MS: Men (MS-356)

Sex and MS: Women (MS-213)

Talking with your kids (MS-316) Primary progressive MS (MS-352) Secondary progressive MS (MS-458) Disease Modifying Drugs (MS-90)

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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.

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will never exchange your details or sell or rent your data to any other commercial or charitable organisation. You can unsubscribe or change the way we communicate with you at any time. To read our privacy policy please go to mstrust.org.uk/privacy. If you would like to contact the MS Trust about the information we send you, please call 01462 476700 OD August 19 working file.indd 24

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