Open Door August 2017 by MS Trust

Open Door Quarterly newsletter of the MS Trust

August 2017

Enabled Enabling by design How Denise Stephens is by design working with designers to

How MS are buildpeople a morewith accessible working with designers and adaptable future to build and adapt a more accessible future

Also in this issue New nurses arrive in Leicester

Our new project to transform care for people with advanced MS

Top tips for caring for a partner with MS

Ask the expert: MS and mental health

Welcome to the August issue of Open Door 2017 is shaping up to be a big year for the MS Trust. In this issue you will read about the new MS nurses starting in Leicester (the first, we hope, of many more across the UK) and our plans to transform care for people living with advanced MS. These are huge projects for a charity of our size to embark on, and they are only possible thanks to the support of people like you. Supporting this work doesn’t mean having to climb a mountain (as Andy Merry did for us recently – see

How we’ve been working for people

p22). It could be as simple as buying a Christmas card or playing our lottery (see enclosed brochure). Unseasonable as it might seem, you will find our 2017 Christmas catalogue included with this issue. Christmas cards play a huge part in enabling us to work to make even more of a difference for people living with MS; last year sales raised over £165,000! That has meant we can continue to produce reliable, accessible MS information, and help develop strong Open Door will and sustainable MS services. I hope you find always be free to our something you like! readers, but it costs us £2 to produce and post each Very best wishes, issue to you. Pam Macfarlane, Chief Executive, MS Trust If you’d like to donate to cover these costs text with MS since our last issue OPEN44 £2 to 70070

Helping to bring new MS nurses to Leicester

In June we were delighted to welcome Joanne and Jonathon, the very first nurses to benefit from our new model of support, to Leicester. They’ll be working with the existing nurses to make vital services even more accessible for people living with MS across Leicestershire and Rutland. We hope to name new nurses in Bradford and Lanarkshire very soon, and with your support we plan to bring more nurses to places in the coming months and years. Find out more about why we’re funding and training MS nurses and how you can get involved at mstrust.org.uk/nurses

Revising Making Sense of MS to be even more useful Being diagnosed with MS can be a worrying experience. That’s why we developed Making Sense of MS, our resource for people who are newly diagnosed. This year we’ve completely reviewed and updated it, considering feedback from people who have used it and the latest advice from health professionals. Lots of people with MS told us how useful Making Sense... had been: “It’s not overwhelming and it’s all relevant information which you can come back to”, said one user. But people also told us that they preferred to be told up front about the more difficult and challenging aspects of MS, so we’ve revised things appropriately, and incorporated all the latest evidence. Making Sense... consists of a small blue booklet which answers immediate questions, a pack with more information on core topics, and info sheets on areas that you may want to look at later. The new edition will be available in late August. See the back page for full details and to order. The online version of the resource has also been updated, and includes people with MS discussing their experience of diagnosis and adjusting to life with MS. We believe you’ll find it useful, even if you’ve been living with MS for some time. Check it out at mstrust.org.uk/msoms 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

Open Door August 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust

Contents 4

News Our new project to transform care for people living with advanced MS, new MS nurses start in Leicester, plus European licence recommended for cladribine

New research on how fatigue fluctuates, whether we can predict ‘benign MS’ and how hospital visits affect MS

Meeting many of you at Goodwood! The MS Circuit Challenge at Goodwood has become one of the highlights of our year, and this year was the biggest and most successful yet. You raised over £32,000 which we will use to publish vital information and train key health professionals. Huge thanks to Kenny Smith for organising the event and thank you to everyone who came along, with a special mention to Gaurav Wadhwani and his team the ‘MS Dossers’ (above, with Gaurav’s mum) who have raised over £15,000 for the MS Trust!

Making your voice heard in drug appraisals We are one of the key organisations NICE turns to when it considers new treatments for MS. In June, we fed back on cladribine, shortly to be marketed as Mavenclad (see news on p6). Thanks to our contact with people who use our enquiry service who have already used the drug, we were able to highlight the potential benefits. There are some significant appraisals coming up soon, including for ocrelizumab, and we would very much like to incorporate your experiences. Look out for requests for help, online and in Open Door, very soon.

Research update

Enabled by design Denise Stephens explains how she is using her own experience of living with MS to promote more accessible, adaptable, everyday products

10 ways to help your partner if they have MS MS can put a strain on even the strongest relationship. We offer some tips for making sure you can continue to support each other

Pilates We hear from people with MS in Norwich who are finding out how pilates can help with their fitness, balance and wellbeing

Mental health and MS Neuropsychologist Jo Johnson answers your questions

Get involved Fundraising for the MS Trust has never been so easy or fun. We offer some top tips for getting involved

15 minutes with... MS Trust supporter Andy Merry tells us about climbing Mont Blanc after being diagnosed with MS

Cheering on MS nurse Liz Along with a team of supporters, Liz Watson jumped from 15,000 feet above Lancashire as part of our Big Blue Jump to help raise funds for an additional MS nurse to join her in Bradford, as part of our Specialist Nurse Funding Programme. Look out for more details in our autumn issue! To find your own opportunity to jump visit mstrust.org.uk/jump

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

News How we’re working with The October Club to transform care for people with advanced MS We’re excited to announce our new partnership with The October Club to fund pioneering new Advanced MS Champions to help people manage symptoms and access the co-ordinated care they need Since 1987 The October Club, a group of people working in the City of London Equity Business, has raised over £10 million for charitable projects, with an average £500,000 for each cause. For their 30th anniversary they have chosen to raise funds for the MS Trust’s Advanced MS Champions project, which will bring urgently needed care and support to people living with complex and challenging symptoms. Advanced MS is characterised by increasing disability, including mobility and balance problems, severe pain and fatigue, difficulty swallowing, spasticity, bladder and bowel problems, and loss of memory. The MS Trust estimates up to 40,000 people in the UK have advanced MS. However, MS Trust research has found that many people with advanced MS report losing contact with MS services as their condition gets worse, and have to rely on informal care from family and friends. Thanks to the support of the October Club, the MS Trust is now able to launch a new three-year programme to pioneer Advanced MS Champions to bring coordinated care to these people. “Since 1987 The October Club has been proud to give something back, by helping small charities make a huge difference,” said Mark Pumfrey, Chair of The October Club. “We’re delighted that for our 30th

To find out more about the Advanced MS Champions project visit mstrust.org.uk /champions

anniversary we will be helping a great charity, the MS Trust, transform support for people living with a desperately challenging condition.” “The MS Trust is honoured to have been chosen to work with The October Club,” said Pam Macfarlane, Chief Executive of the MS Trust. “Our work over the past five years has shown that people with advanced MS and their families all too often miss out on vital specialist care. The generous support of The October Club will enable us to act boldly on our research and make a huge difference for these people today.” This programme will fund six new Champions over a three-year period to trial different approaches

Open Door August 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust

and models of care ahead of a national roll-out. These Champions will work with people with MS and their families to understand their needs. They will use their specialist knowledge to help them manage their symptoms, and will identify potential issues before they become emergencies. They will also co-ordinate care from other specialists to provide properly joined-up support. We believe that these Champions will be able to demonstrate significantly better care for people with MS, and dramatically reduce NHS costs by providing ongoing, proactive care. With a firm commitment from the NHS to permanently fund these posts, and MS Trust plans to build on this pilot programme, The October Club investment will leave a huge and lasting legacy for the future.

Volunteer in a card shop this Christmas and make a difference for people living with MS

Jonathon (left), and Joanne (right) with Allison Smith, one of the existing MS nurses in Leicester

We’ve helped bring new MS nurses to Leicester Jonathon and Joanne are the first nurses to benefit from the MS Trust’s new model of support We were delighted to visit Leicester in June to meet Jonathon Maisey and Joanne Pughe, the first two new MS nurses to benefit from our Specialist Nurse Funding Programme. As well as training and supporting them both, we will be also funding 80% of one of the posts for 15 months, after which time the local NHS Trust will take over full financial responsibility. We hope that Jonathan and Joanne are just the first of many MS nurses that, with the help of our amazing supporters, we are able to bring to parts of the UK that we know need them most. As we go to press, we’re currently helping recruit new nurses in Bradford and Lanarkshire, and speaking to a number of other sites across the UK. This is all part of our campaign to make sure that no one has to take on MS alone. Jonathon and Joanne were welcomed to Leicester by Megan Roberts, MS Trust Specialist Nurse Programme Manager, Dr Jithin

George from the Leicester Hospitals neurology department, plus a number of service users. “I find MS nurses fantastic! They are so essential because everyone’s journey with MS is completely different,” said Adrian, one of the people with MS who welcomed the new nurses Allison Smith, one of the existing MS nurses in Leicester, who has worked with the MS Trust to make the case for the new nurses said: “We were so pleased to welcome Jon and Joanne. We have really big plans to support people with MS throughout Leicester, Leicestershire and Rutland by having more community clinics and allowing more access To find out more to MS specialists. about our Specialist None of this would Nurse Funding have been possible Programme visit without the help mstrust.org.uk of the MS Trust and /nurses their supporters.”

Last year the MS Trust raised £127,000 by selling Christmas cards in Cards for Good Causes shops all around the UK. These local pop-up shops are in churches, libraries, community centres and museums, and sell cards on behalf of 300 charities. We are looking for volunteers to help in the six to eight weeks before Christmas. Many volunteers work one session (three hours) per week, or one session per fortnight for the duration of the season. Volunteering in a Cards for Good Causes shop can be a great way to get work experience, learn new skills and meet new people in a friendly environment. Rachael, who helps in a shop in Worcester, says, “Volunteering helped me to regain some confidence after leaving my full-time job due to the fatigue and cognitive difficulties I’d been experiencing with my MS. I really enjoyed meeting fellow volunteers and serving customers.” With shops from Yeovil to York, several in London and many more in-between, the chances are there will be a shop near you! More shop locations will be added later in the year so register now and we can advise if a shop opens in your town. To find out more and to see a list of shop locations visit mstrust.org. uk/shop-volunteer

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

Simvastatin trial for people with SPMS announced The launch of a trial involving more than 1,000 people with secondary progressive MS (SPMS) has been announced. The trial will investigate whether simvastatin can slow down disability progression. Simvastatin belongs to a class of drugs called statins which are used to lower cholesterol. A previous phase II study (MS-STAT1) was carried out in 140 people with SPMS who took either simvastatin or inactive placebo for two years. The study found that the level of brain tissue loss, an indicator of MS progression, was lower in the simvastatin group. This new phase III study (MSSTAT2) will investigate this further in a larger group of people. The researchers aim to recruit 1,180 participants with SPMS at study

centres in the UK who will take either simvastatin (80mg/day) or placebo for 3 years. This dose of simvastatin is at the top end of the range normally recommended for lowering blood levels of cholesterol. The main measure of progression will be an increase in EDSS which lasts for six months or more. Participants will also be monitored for other measures of MS progression and will be asked to complete questionnaires to measure the impact of MS on their day-to-day living. The trial is due to start this November and is not yet ready to recruit participants but you can register your interest in taking part by visiting mssociety.org.uk/msstat2-info

Dr Jeremy Chataway explains more about the new trial How could simvastatin potentially help people with SPMS? There is increasing evidence that statins have cell protective properties and improve blood flow to the brain. In this new trial, we hope that simvastatin will slow down the progression of disability. Are there any known side effects of the drug? Generally it is very well tolerated and we saw no difference in side effects between the treated and placebo groups in the MS-STAT1 trial. There is a very low risk of significant muscle inflammation of around 1% and a risk of 2% in the liver function tests. All participants in the trial will be carefully monitored and, if side effects occur, the medication can be stopped.

If the results of the trial are positive, how long will it take before the treatment becomes available on the NHS? Once we have completed the trial, we would submit the results to NICE for evaluation. Since it is such a cheap drug we would be very hopeful that it would be fully supported on health economic grounds as well as clinical effectiveness. Could the treatment also be used for people with primary progressive MS (PPMS)? The trial is designed for people with SPMS after the original MSSTAT trial. Of course if it showed an effect in SPMS it may well work in PPMS.

European licence recommended for cladribine (Mavenclad) The European Medicines Agency (EMA) has recommended that a licence should be granted for cladribine (Mavenclad) for the treatment of highly active relapsing multiple sclerosis. The next step in the approval process is for the European Commission to grant a licence for cladribine, taking into consideration the EMAâ&#x20AC;&#x2122;s recommendation. Cladribine will then have to be appraised by NICE and the Scottish Medicines Consortium to determine availability in the UK. In anticipation of the granting of a licence, NICE have already started the appraisal process and a decision is expected to be published in February 2018. The MS Trust is contributing to the appraisal. If NICE approves the use of cladribine, it could be available on the NHS in England from June 2018. In 2011, an application for a licence was turned down due to concerns about a higher risk of cancer in people taking cladribine in clinical trials. Further analysis of clinical trial data and comparison with data from trials of other disease modifying drugs suggests that there is not an increased risk of cancer in people taking cladribine. In large clinical trials, cladribine reduced the risk of relapses by 58% compared to placebo. Cladribine also significantly reduced the risk of increased disability which persisted for 3 or 6 months. The main side effects reported in clinical trials include reduced white blood cell counts which in most cases was mild or moderate but was considered more severe in about 25% of those taking To find out more cladribine, and about MS drugs in the infections, including pipeline visit herpes zoster mstrust.org.uk (shingles).

/drugs-development

Open Door August 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust

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

Describing fatigue Soap characters diagnosed with MS First Neighbours, then Hollyoaks and now Coronation Street: a series of TV characters have been diagnosed with MS. But is this a good way of raising awareness, or an unhelpful misrepresentation? I am so glad this will be given air time. It’s something we don’t see enough. The more people that know MS at its different stages the better. More funding and research is desperately needed for this disease. I do hope Corrie follows through with this as other soaps have forgotten about characters symptoms a year down the line and that’s definitely not the case. – Michaela Hollyoaks has been very unrealistic in terms of how quickly MS has been diagnosed. I’ve had symptoms for almost two years, it took four months to get a neurology appointment, a month after my MRI and I still haven’t got my follow up and had to get the doctor to chase that up too. I know soap operas aren’t real, but it does give false hope to people who are stuck in limbo, that’ll they’ll get a diagnosis within four months. – Mindy Our daughter Sarah-Jane suffered for years before being diagnosed with MS. Eventually a GP asked her what she thought was wrong. She replied MS, because someone on Neighbours was playing the part, and she had seen her symptoms. Therefore I believe it’s important that soaps portray as many different illnesses and conditions as possible. It may just be enough to get doctors thinking. – Tommy

I don’t think either of the soaps are doing a particularly good job. If only I fell a few times or dropped a few things! MS isn’t that easy to diagnose. To be fair I suppose after a few weeks he’ll start to remember lots of things that have happened to him. I know when I look back I did! – Elaine I am just glad the soaps are finally getting on board with MS and hopefully it will help to educate the general public at the same time. Soaps have to get it right but soap time and real time are very different. I applaud Corrie and the other soaps for taking on the subject matter. I think we should all give them the chance to see the storylines unfold before complaining that they got it wrong. – Judith This is brilliant. I’ve always been up front about my diagnosis with people. It’s by knowing a real life person with MS that people’s preconceptions can be changed. I trust this lot will show it as honestly as they can and not rush the poor chap off to Dignitas via a wheelchair. – Tim

Attempting to describe fatigue to someone who has never experienced it before can be a thankless task. People often don’t understand the sheer scale of what you’re going through. We asked people on our Facebook page if they had any good ways of explaining it to others. It feels like walking a couple of miles with sand weights increasing slowly, then when you stop walking and start again, feels like weights are taken off, so your legs feel light as you walk for couple of mins. Then that weight of sand comes back but doubles in weight. – Stefano I think of energy as a bucket, everybody has a full bucket at the start of the day. During the day energy seeps out through a small hole (this covers the ‘but everybody gets tired!’), however there are times when the bottom falls out of my bucket! – Sue I tell people I feel like the bunny in the Duracell advert - the one that’s not the Duracell Bunny! – Morag MS fatigue is like an overwhelming feeling that you are walking through treacle and your brain switches off and cannot think straight. It is not like being tired, you cannot push through it. It is horrible – Shane To me it’s like having a small child clinging to your leg when he doesn’t want you to go out for the evening! – Maria

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

Research update

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

How does MS fatigue fluctuate over time? Fatigue is one of the most common symptoms of MS but the causes are not well understood. In this study, researchers tried to record fatigue in the context of everyday life, and so get a better understanding of how levels fluctuate Authors Powell DJH, et al Title Tracking daily fatigue fluctuations in multiple sclerosis: ecological momentary assessment provides unique insights Journal Journal of Behavioural Medicine 2017 Mar 9. [Epub ahead of print] >> Read the full study: tinyurl.com/ms-fatigue

The study Over four weekdays, 76 participants – 38 with relapsing remitting MS (RRMS) and 38 without MS – were asked to record levels of fatigue together with details of their mood, exposure to stress and what they were doing at six time points during the day, between 10am–8pm. At the start of the day they were asked to rate the quality of the previous night’s sleep and in the evening they were asked to score their overall fatigue level for the day.

What was found As might be expected, there were substantial fluctuations in fatigue in people with RRMS. On average, their fatigue levels started higher and remained higher throughout the day, increasing more rapidly in the earlier part of the day, peaking in late afternoon, then leveling off in the evening. People without MS started at a lower level and had a slower, steadier increase in fatigue levels across the day. In both groups, greater exposure to stress (for example deadlines at work or family conflict) and low

mood were associated with higher fatigue levels, positive mood with lower fatigue levels. Increased fatigue was associated with recent physical activity in people with MS but not in those without MS. However, physical activity was recorded as a simple Yes/No score with no indication of intensity; this extra detail would have added more value to the data. Surprisingly, a poor night’s sleep did not affect the next day’s fatigue levels in people with MS but did increase fatigue levels in people without MS.

What does it mean? This research highlights the variation in fatigue experienced by each person with MS and reinforces the need for personalised approaches to manage it effectively. Future studies of MS fatigue could explore ways to improve positive mood and respond to stress arising from personal relationships and the work environment. Ways to manage peak fatigue in the afternoon and after physical activity could also be explored.

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Managing fatigue It’s not possible to make fatigue go away completely but there are techniques that can be used to reduce the impact on your daily life. Health professionals, typically MS nurses, occupational therapists or physiotherapists, can help you find ways to manage fatigue. Perhaps more than any other symptom of MS, the most important person in the management of fatigue is yourself. Keeping a fatigue diary is a good place to start. You could do this yourself using a notebook with columns ruled for date/time, current activity, fatigue score (1=low level of fatigue to 10=extreme fatigue) and notes about how you are feeling. If you do this for at least week, it will help you to see patterns in your fatigue levels and identify activities or incidents which are particularly draining. Knowing more about how your fatigue levels respond to the ups and downs of daily life will allow you to plan for times when you have more or less energy and look at ways to deal with low mood, stress To find out more within the family or at about managing work or other factors fatigue and keeping a you might identify from fatigue diary visit your diary.

mstrust.org.uk/ fatigue

‘Benign MS’: how do we define it, can we predict it? Benign MS is a term sometimes used to describe MS which follows a mild course, with very occasional relapses from which people make a full recovery. The use of the term has become very controversial, with some neurologists questioning whether it really exists. In this study, researchers wanted to see how many people considered to have benign MS would remain so after 10 years, and whether it was possible to predict Author Sartori A, et al Title Can we predict benign multiple sclerosis? Results of a 20-year long-term followup study Journal Journal of Neurology 2017; 264:1068-1075 Read the full study: tinyurl.com/benign-MS

The study Researchers looked at records from the Ottawa Hospital MS clinic database and identified 175 people with an Expanded Disability Status Scale (EDSS) score of 3 or less, 10 years from the onset of MS, who had been assessed in clinic after 10 and 20 years.

The results Of the 175 people defined as having benign MS, 66.3% remained benign at 20 years. The remainder had progressed and were no longer benign. By reducing the cut-off for benign MS to EDSS 2 or less at 10 years, 71.9% remained benign at 20 years. Further redefining benign MS to EDSS 1 or less at 10 years, 81.6% remained benign at 20 years. The researchers were unable to identify any early clinical indicators which could accurately predict future benign course.

What does it mean? Setting a cut-off of EDSS 3 at 10 years did not reliably predict those who would remain benign at 20 years; nearly 4 out of 10 people went on to have a more progressive course of MS. The researchers conclude that a better definition of benign MS

What is the Expanded Disability Status Scale and what does it mean?

The Expanded Disability Status Scale (EDSS) is the tool that neurologists and other health professionals use to measure disability in people with MS and requires stricter EDSS cut-offs at monitor changes in disability over time. It is widely 10 years (2 or less, or 1 or less). used in clinical trials and the licensing of disease Selecting benign MS based on EDSS modifying drugs. at 15 years rather than 10 years also The EDSS scale ranges from 0 to 10 in 0.5 unit gave a more accurate long term increments that represent higher levels of disability. prediction. Scoring is based on an examination by a neurologist. Since none of the early clinical EDSS steps 1.0 to 4.5 refer to people with MS who indicators could predict future are able to walk without any aid and is based on course, they concluded that benign measures of problems with weakness, co-ordination, MS can still only be decided in speech and swallowing, numbness, bowel and retrospect. They consider that bladder function, eyesight and cognition. EDSS steps delaying disease modifying drugs 5.0 to 9.5 are defined by impairment to walking. (DMDs) in the hope of someone EDSS is sometimes criticised for a number of being and maintaining a benign reasons. Firstly, because people’s MS symptoms status is risky, particularly as, once vary from day to day, they may get an EDSS score it is clear that someone is no longer depending on how they were doing at the time benign, they may have progressed when they were assessed – which may or may not be to the point where DMDs are no typical. longer effective. EDSS also measures disability primarily by the The researchers recognised mobility of the person with MS. For example, EDSS several problems with the methods 4 is defined as someone able to walk 300m without they used, including the limitations aid or rest, while at EDSS 6 they require a walking aid, of the EDSS scale as a measure of such as a cane or crutch to walk about 100m, with MS and the likelihood that people or without resting. Some neurologists have noted who truly had that this doesn’t measure how MS affects upper limb benign MS mobility, for example. may not If you want to know more about your EDSS have To find out more about score and what it means for you, speak to attended the different types of your neurologist or MS nurse. You can also try clinics. MS visit working out your EDSS for yourself by using mstrust.org.uk/ the online EDSS calculator developed by the MS Team at Barts Hospital in London: edss. a-z/types-MS clinicspeak.com

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

How do hospital visits affect your MS? A recent MS Trust report showed that an increasing number of people with MS have to go to hospital for emergency treatment. But how do these visits affect your MS? This study tried to find out Author Garland A, et al Title Hospitalization is associated with subsequent disability in multiple sclerosis Journal Multiple Sclerosis and Related Disorders 2017; 14: 23-28 Read the full study: tinyurl.com/ms-hospital

The study Canadian researchers crossreferenced two sources of data: records from an MS clinic in Calgary and a database recording details of hospital stays. They selected records which included EDSS assessments (see p9), together with other details. They excluded data for hospital stays relating to pregnancy and childbirth.

The results From the two sources, the researchers identified just over 2,100 people with MS. Over a five year period, 23% (491 people) had been in hospital at least once, of which 29% were planned hospital stays. 7% (156 people) had been in hospital more than once. The underlying rate of disability progression averaged approximately 1 EDSS point per decade. Following hospital stays there was a step increase in EDSS. On average EDSS increased by 0.23 points, equivalent to approximately 2.5 years of MS progression. The effect of a 10

second hospital stay led to a similar step increase in EDSS. Following hospital stays, disease progression continued at the previous rate. The step increase was greater for unplanned, emergency stays compared to planned stays, for hospital stays that required a stay in the intensive care unit, for hospital stays not related to MS, and for longer rather than shorter lengths of stay.

What does it mean? The results clearly show that a sudden illness requiring a stay in hospital leads to an increase in disability. The results emphasise the importance of avoiding the need to go to hospital in the first place. Read the MS Trust report on emergency admissions at mstrust.org.uk/ms-admissions

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How can I avoid emergency hospital visits? Urinary tract infections, pressure ulcers, chest infections and other complications caused by MS can be identified and addressed at an early stage, before they get to the point where someone ends up in hospital. MS specialist nurses play an important role in identifying people at risk of complications before the crisis happens and co-ordinating health services to provide more proactive care. Having MS doesnâ&#x20AC;&#x2122;t stop people from developing other medical conditions so itâ&#x20AC;&#x2122;s important to seek medical advice for any unexplained symptoms you might notice. Taking advantage of any health screening programmes you are offered can spot early signs of other illnesses and improve the likelihood of successful treatment. People with MS are eligible for the annual flu jab; flu can be unpleasant if you are otherwise healthy but can lead to more serious complications, such as bronchitis and pneumonia which may require hospital treatment. Many people actively take steps to manage their MS and to live as well as possible. This can include keeping as fit and active as you can through regular exercise, maintaining a healthy weight, keeping your mind active, avoiding smoking, limiting how much To find out more about alcohol you drink and managing your MS, visit continuing to take mstrust.org.uk/ any other medicines taking-charge that you doctor has prescribed.

ACCE S S IB L E DESIG N

Enabled by design Today there is greater awareness than ever of the need to make products, services and environments accessible to everyone, regardless of disability. However, when Denise Stephens was diagnosed with MS at the age of 24, she was disappointed to find that a lot of equipment recommended to her made her feel like she was “living in a hospital”. Determined to find things that worked for her, and share her discoveries with others, she founded Enabled by Design, a community of people passionate about design for all. She tells Open Door about how she entered the world of design, shares her ambitions and highlights some of her favourite tips I was diagnosed with relapsing remitting MS in 2003. At that time I was working as a forensic toxicologist, but within six months of being diagnosed my health went downhill very quickly. I had a series of disabling relapses and got to the point where I couldn’t walk, couldn’t use my hands and couldn’t see out of my right eye. I was heartbroken to have to give up my job, after working so hard to get into forensic science. At the time I was living with a friend who was working long hours, so I was practically living on my own. I was really struggling with day-to-day tasks and keeping my independence was so important to me. At my worst point I remember being sat on the kitchen floor, almost in tears, because I needed to open a jar of pasta sauce. It probably sounds ridiculous, but I couldn’t use my hands to unscrew the lid and my friend was at work. It was the only thing I had in the house to eat and despite trying everything I could think of, I just couldn’t open it, so I didn’t eat that night.

Keeping independent After being discharged from hospital, I was referred to an occupational therapist (OT), who came to see me at home. They assessed me and gave me a range of equipment so that I could carry on with my day-to-day life as safely as possible. I was having a lot of accidents at the time and falling quite often. I had a bath that had a shower over it and I had a number of falls getting in and out of the bath, as well as while standing in the shower. So I was given a bath board to help me get in and out of the bath more safely. I’d also been burning myself while using the kettle and trying to lift hot pans. My hands were quite weak and numb and I also had tremor. So I was given some tools for the kitchen to help improve grip, which included cutlery with foam padded handles. I thought all of this stuff was pretty amazing, as it helped me to live as independently as possible. But as time went by, I became surrounded by lots of white and grey wipe-clean

plastic goods, which made my home start to feel like a hospital. I had already spent quite a lot of time in hospital and I really wanted to get away from that! It felt like I’d done everything in life to get to the point where I lived in a nice home that I could decorate how I wanted, and then suddenly you’ve got all this clinical looking stuff and it doesn’t really feel like your home anymore.

Function and feel At that point I didn’t realise that I was interested in design. But as time went by I started to look for more mainstream products that did pretty much As time went by I was the same sort of surrounded by all these thing and met my white and grey wipe-clean needs in terms of plastic goods... functionality. Some of the equipment I had been given didn’t work particularly well. I think that people

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often assume because these things have been made for people who have a disability, they must work – but this isn’t necessarily true and they can sometimes come with an inflated price tag because they’re seen as a specialist product. My OT had tried to persuade me to get a kettle tipper and I really didn’t want one. To me they look like a seesaw for your kettle! So I decided to buy a Breville Hot Cup. It sits on the counter in my kitchen; you put a cup underneath the nozzle and it dispenses a cup of hot water, so I never have to lift up a hot kettle, which is fantastic. I think it looks really nice and when it’s boiling it lights up with a blue light, so it looks a bit space age. I’ve got friends who don’t have a disability who’ve asked me where I got it because they really like it too.

Enabled by Design Over time, while looking for mainstream products, I started to think, these are really useful, surely if I share them with other people in similar situations, they might find them useful too? So I set up Enabled by Design with the idea that it would be a community to share good products and good design that can help to make life easier. And that started back in 2008. Originally it was going to be like an eBay for assistive technology, but I decided that this was just going to end up listing the same white and grey wipe-clean products that I’d been trying to get away from. That really wasn’t what I wanted, so I started to think that design would be the key to this. And maybe speaking to designers just out of university, who are relatively new to the design world, might be a good start. I’d already spoken to and heard talks from some companies and designers, and it was almost as though they felt that disabled people were a niche market. They wouldn’t be thinking about how to

make things more accessible – that would be too specialist. But I’m really passionate about mainstreaming accessibility. I think Design for All is a very good starting point and it’s important to try and build in accessibility from the Denise with James from Fixperts with a camera that has been adapted using Sugru (see opposite page) beginning. But I think on top of that you need to assistive product to be important, build in the ability to customise but sadly aesthetics things, because everyone’s can be stigmatising. different. You need to be able to This can mean that modify things to help make them some people don’t use work better for you. the products that they One size doesn’t fit all! actually need and might You need to have choice Supporting choice be putting themselves in I think the design community and that’s really important a vulnerable position as a public perception is changing. result. I remember being When I first started out I heard 25, not long after being some people saying, “It’s a bit diagnosed, and being pointless, it’s a niche market, people offered a zimmer frame. aren’t really interested in disability I remember turning it products. What’s the point?” But down and then feeling as time has gone by, I’ve found really bad, in case they thought I that sometimes it’s about meeting was being vain. I just remember the right people. There are lots of thinking, “I really don’t want to makers and designers out there walk down the street and have who are interested in working with people staring at me, wondering people with disabilities and people why I’m using a zimmer frame when with all sorts of needs. Enabled by I’m 25!” Everyone is different. For Design started out looking at the some people they don’t mind how short term – what’s already out something looks – as long as it there, what’s on the market and works for them. But for other people what works well. But over time they might not use a particular we also became interested in the product because it looks a certain medium term – modifying and way or how they think they might fixing things to work better for be perceived if they use it. I’ve met you – as well as the longer term people who feel this way about work of speaking to designers walking sticks and crutches. One and the design community to size doesn’t fit all! You need to have encourage more accessible design. choice – that’s really important. Some health professionals don’t consider the aesthetics of an

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Denise’s top tips Interested in organisations or tools that help you make your world more adaptable? Denise suggests three of her favourites

Sugru

Fixperts Back in 2012 I was involved in a project called Fixperts – they bring together designers and people with challenges who need some design input. They document it all by filming it and share that with the wider community. I found getting involved with this really was a breath of fresh air. My challenge, because I have poor dexterity and numbness in my fingers, was to find a way to help me put in my earring studs. Some people would say, “well just don’t wear earrings”, but it felt like I’d had that choice taken away from me. I’ve had presents given to me over the years, so I don’t want to leave the earrings I’ve been given in a little box and just forget about them. They matched me It was like my with a designer independence and choice called Florie and were given back I felt bad when I gave her my tricky to me challenge. Putting in an earring stud

is really quite fiddly and there are lots of parts to the process. But Florie went away and came back with an amazing prototype. There were two prongs that fitted to the butterfly, and another bit that fitted to the front. It was a bit like a stapler! But the first prototype didn’t quite put the earrings together – it was too flimsy. So she went away and did more research and eventually came up with the idea of using the tweezers that jewellers use for bending metal. These were much better at holding the earring in place and she made the rest of the gadget more rigid. When she came back I was able to put my earrings in for the first time in ages – about nine years? That was pretty amazing! I was really happy, it was like my independence and choice were given back to me. I could wear earrings if I wanted to, or not – it was up to me. It wasn’t because I couldn’t do it. It was my choice. Find out more about Fixperts at fixperts.org

One product I particularly like is Sugru, which is a mouldable glue. It looks like plasticine and you can use it to fix or adapt things. It cures at room temperature. You can use it for all sorts of things: on cutlery to make the handles easier to grip, on remote controls to build up buttons to make them easier to press or on your phone to make it easier to hold. The nice thing about Sugru is that they’ve built a community of people who share what they’ve been fixing and modifying, so you can get inspiration from what other people are doing. Sugru has some great properties - you can put it in the dishwasher for example. And once you’ve stuck it onto something, it’s not permanent. If you decide you want to change anything, you can carefully cut the Sugru off and start again. Find out more at sugru.com

Remap Remap is a national charity that works through local groups of skilled volunteers – often people who are retired engineers or designers. They help people achieve independence and a better quality of life by designing and making equipment for their individual needs. This tailor-made equipment helps people to carry out essential daily tasks without having to ask for help, or helps them take part in leisure occupations or sports that would otherwise be impossible. Find out more about Remap at remap.org.uk

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

R E L AT ION S H IP S

10 ways to help your partner if they have MS Relationships are full of ups and downs – it’s a fact of life. But when your partner has a long-term health condition like MS, there may be some extra bumps in the road for you both to navigate. Here are a few ways you can support your loved one along the way

Patience is a virtue Patience is hugely important in any relationship, but when your loved one is struggling with the symptoms of MS, it is even more vital. This could mean not immediately jumping in like a know-it-all when ‘cog fog’ clouds their thoughts (cognition issues are a common symptom of MS), understanding that they may not always be able to keep up with your pace when MS fatigue rears its ugly head, or simply giving them enough time and space to make sense of an MS diagnosis in their own way. A little bit of patience can make a very big difference.

It’s good to talk (but only when you’re ready) Some people may be happy to talk about their MS, but others might find it more difficult, especially if the diagnosis is still very raw. Never put pressure on your partner; they’ll open up when they are ready, and it is your job to be there to listen whenever they need a good old moan.

Stay informed MS is a complex condition which can sometimes be misunderstood, so it’s always important to sort out the facts from the myths. Visit mstrust.org.uk for a wealth of information on MS, from the latest research to the best ways to manage different symptoms, or call the MS Trust’s free enquiry service on 0800 032 38 39 with any questions you might have. You could also offer to attend

medical appointments with your partner. The better you understand the condition, the better support you can give.

Keep a sense of normality

Fatigue is one of the most common and debilitating symptoms of MS, so when you want to spend quality time together, embrace the simple pleasures in life

It might be tempting to wrap your partner up in cotton wool, smother them in love and affection, and forbid them from lifting a finger. Although they might find this fun for a while (we all love being pampered now and again!), in the long-term this overbearing approach is bound to wear thin. Most people with MS are determined to try and live as normal a life as possible and will resent constantly being asked if they are ok. They will ask for help if and when they need it, so don’t force it upon them.

Less is more Fatigue is one of the most common and debilitating symptoms of MS, so when you want to spend quality time together, embrace the simple pleasures in life rather than suggesting activities that might be too much.

Be willing to adapt MS is unpredictable. Different people with MS experience different symptoms at different stages. You don’t know how they’ll feel day to day or even hour to hour, so it’s important to be flexible with your plans. You don’t have to let MS rule your lives, but you do have to be willing to adapt.

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Let’s talk about sex (baby)

If you’re both open and honest about how you’re feeling, you’ll be in a much better place to deal with any issues.

It is only natural for couples to be worried about how MS might affect their physical relationship, and it is true that in some cases difficulties can arise. A diagnosis and the symptoms of the condition will undoubtedly affect how your partner feels about sex and intimacy and how they might relate to you, but if you’re both open and honest about how you’re feeling, you’ll be in a much better place to deal with any issues. Be prepared to change routines to accommodate fluctuating energy levels, to adapt sexual positions or find different ways to be intimate with each other that don’t involve sexual activity.

Be their partner first The partner of someone with MS may find that at certain stages they are taking on some aspect of care. This might be personal care, helping out around the house with day to day tasks or helping your partner get around if they have poor mobility. If this is the case, always remember you’re first and foremost their husband or wife; boyfriend or girlfriend; the role of carer should never overtake that.

Look after yourself It’s important to make time for yourself too. When you’re feeling a little overwhelmed, don’t feel guilty about asking for extra support from friends or family so you can take a break. Looking after yourself, both physically and emotionally, will put you in a better position to support your partner and should have a positive effect on your relationship too.

Be there An MS diagnosis is the start of a long and unpredictable journey, and there are likely to be many bumps along the way. So just being there, unconditionally, through the ups and downs, is the most important thing.

Read more at mstrust.org.uk/ relationships

Make sure you continue to care for each other Julia Segal works as a counsellor for people affected by neurological and other physical health conditions in North West London. She has recently written The Trouble with Illness: how illness and disability affect relationships What are the most common issues couples face following an MS diagnosis? The main thing is that your experience of the world changes if you have MS, or if someone you love has it. The potential for misunderstanding increases enormously. Deciding what is reasonable behaviour, what is ok to think or feel or do, what to fight about and what you have to accept, what is somebody’s fault and what they can’t help, all of these are made more complicated by a physical health condition of any kind – your own or someone else’s. What would be your advice for someone supporting a partner with MS? Every relationship is different, and everyone wants supporting (if they do) in a different way. I’d also want to challenge the implication that only the person with MS needs support, when I think people with MS are mostly perfectly capable of supporting their partners too – though there may well be times when one or both cannot support anyone else. MS is a lifetime illness, and I think it is a risk for relationships, particularly in the long term, if one person feels they have to do all the supporting. So part of my answer is that it might be important to make sure that both of you take responsibility for continuing to care for the other, in whatever way you can – and a partner might have to accept that they can allow themselves to be cared for too, without feeling too guilty about it. How can couples access further support? Counselling can help; so too can psychotherapy. Visit itsgoodtotalk.org.uk for more info. I’d also look for your local Relate counselling service. The Relate website (relate.org.uk) has good links. If you can find someone who has used a counsellor or psychotherapist, a personal recommendation may be the best; if not there are plenty of choices on the web in some parts of the country. An MS nurse or GP may know of a local counsellor or therapist which other people have found helpful.

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

STAY ACT I V E

Pilates More and more people with MS are signing up to Pilates classes to improve both their physical and emotional wellbeing. Open Door went along to a class at the MS Therapy Centre in Norwich to find out why this type of exercise is proving so popular among the MS community and to meet some of the men and women reaping the rewards

The benefits of exercise for people with MS are wellknown, with research showing that regular and moderate activity can actually reduce fatigue levels, as well as improve things like strength, mobility and bowel and bladder function. From Zumba to spinning, deep water exercise to running, people with MS often tell us about the weird and wonderful exercise classes they partake in and how much it has helped them to manage their MS. One type of exercise which is proving particularly popular amongst the MS community is Pilates, with research showing that this core-strengthening exercise can improve balance, mobility and muscle strength, plus lead to greater improvements in cognitive symptoms and quality of life when compared to more traditional exercise. For those unacquainted, Pilates – according to the NHS website – is a form of exercise “that aims to strengthen the body in an even way, with particular emphasis on core strength to improve general fitness and wellbeing.” Developed by German-born Joseph Pilates, who believed mental and physical health were closely connected, Pilates exercises are often done on a mat or using special equipment like soft balls and bands.

Pilates for people with MS Lauren Murphy runs the weekly Pilates class at the MS Therapy Centre in Norwich and explains what a typical session looks like: “We start with exercises on the chairs, we do standing work at the barre and then floor-based exercises for those who can get down on to the floor. If anybody is unable to get down on to the floor we use

the chairs, and then we use Before I started equipment such coming to the class as bands and I couldn’t bend down to balls to give the floor. But within a few that extra support.” months I could, and I was Pilates able to take part in all the exercises are floor exercises low-impact but work every part of the body, and Lauren has seen first-hand just how much of a difference this type of class can make to people with MS. “There are a huge number of benefits,” Lauren explains. “We look at building strength and control of the muscles, which then helps support the joints. It can improve balance, posture and body awareness, and just general wellbeing, so if you’re feeling particularly tense or tight, Pilates does really help you to relax and just generally get everything moving. “I’ve seen huge improvements in all of my clients here which is so rewarding to see. It doesn’t happen overnight, and you have to work hard, but long-term I have seen changes and I think they would all agree.”

Mobility and flexibility Lisa, who has been attending the Norwich class for a year and a half, certainly agrees. She decided to join to help improve her mobility and has seen big changes. “Before I started coming to the class I couldn’t bend

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PILATES FACT FILE I can get up no problem at all now and my balance is so much better. The core strength is there which I never had before

down to the floor. But within a few months I could, and I was able to take part in all the floor exercises which was a massive achievement for me. “It’s not instant and you do need to work at it, but it really helps you so much. It helps your mobility, your flexibility and it helps you to get more supple. “You get a really nice feeling afterwards. Although you feel like you’ve worked your muscles, you feel like you’ve helped yourself as well, and whether you have MS or not, I would definitely recommend it.”

Core strength Richard, diagnosed with MS in 1998 and a volunteer at the Norwich Therapy Centre, took up Pilates four years ago. Before then he would find himself frequently falling over and struggling to get back up on his feet. He feared he’d end up in a wheelchair if he didn’t do something about it, so decided to throw caution to the wind and sign up to a Pilates class. It turned out to be a very wise decision. “I can get up no problem at all now and my balance is so much better. The core strength is there which I never had before,” he explains. “Getting fit and maintaining your fitness is a no brainer as far as I’m concerned. I’m sure that if I hadn’t started doing it, I would be in a wheelchair by now.”

Good camaraderie But it’s not just the physical rewards that Richard and Lisa are reaping. Both agree that the psychological benefits of Pilates should not be underestimated either. “It really helps your general wellbeing,” Lisa says. “It’s a nice source of support as you can have a chat at the class, swap symptoms and know you’re not alone; you know you’re not the only one going through it. “When I was first diagnosed with MS, I had never

by German • Developed in the early 20th century tes. physical trainer Joseph Pila on, centering, • Main principles include: concentrati . flow and control, breathing, precision even way, with • Aims to strengthen the body in an h to improve ngt stre particular emphasis on core general fitness and wellbeing. ages and • Has something to offer people of all rs to elite beg levels of ability and fitness, from inne athletes. or using special • Pilates exercises are done on a mat equipment. tice can help • Practitioners say regular Pilates prac and joint nce improve posture, muscle tone, bala ion. mobility, as well as relieve stress and tens stability • Some research suggests it can help with elchairs. whe and posture issues in people who use could also • Some research suggests clinical Pilates help with cognitive symptoms of MS.

heard of it, and it really hits you in the face. You think ‘What’s going to happen to me’, but coming to the class and meeting everyone, you know you’re not going through it alone.” “Mentally it’s great because you get a good camaraderie with the other people in the class, and it does make you feel better in yourself,” says Richard. “You don’t get isolated in your house and it gives you that independence.” To anybody thinking about signing up to a class, Lauren, Lisa and Richard would all say one thing: “Give it a try!” “Pilates is suitable for anyone,” says Lauren. “It’s just about having the confidence to go to a class. If it’s not a specific class for people with MS, just let the teacher know about your condition and they will be able to adapt exercises To find a Pilates class to suit you. near you visit “If you go regularly you will see improvements both in the class and pilatesnearyou.co.uk in general life – everyone should For more information on give it a go!” Thanks to everyone at Norwich MS Therapy Centre (mstcn.org.uk ) for their assistance with this article.

staying active visit mstrust.org.uk/exercise

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A SK A N E X P E RT

Mental health and MS Since Mental Health Awareness Week took place back in May, we’ve received a number of questions about the how MS can affect your mental health and how you can manage these challenges more effectively. We put your questions to consultant neuropsychologist Jo Johnson

Could cognitive behavioural therapy help with my depression and anxiety? How does it work? Jo says: Cognitive behavioural therapy (CBT) helps you understand the link between your thoughts and how this impacts your feelings and behaviour. For example, if I see a friend and she walks past me, I might think, “she hates me and is ignoring me”. This might make me remember all the people who have treated me badly. I might think about this for hours and start feeling very sad, angry and lonely. This might make me drink too much or stay in bed. I could, however, respond to this situation differently and instead think, “my friend obviously didn’t see me, maybe she’s stressed; I’ll call her and see if she’s OK”. This reaction won’t make me feel low or do something unhelpful. CBT helps you notice what you think and how it impacts you. There is an additional group of newer therapies that are being described as the third wave of CBT. One of these is acceptance and commitment therapy (ACT). I find ACT is a useful approach for people with MS. It aims to help people explain and manage negative thoughts and feelings, thus making them psychologically more flexible. I find the model very useful as it clearly states we can’t get rid of difficult thoughts and feelings, but we can manage them better. Acceptance doesn’t mean giving in or that what you’re feeling isn’t difficult; it’s to do with allowing

whatever you’re feeling and not struggling to get rid of painful physical or emotional experiences. The ACT model proposes six key elements that, if worked on, lead to increased psychological flexibility. These are: • knowing your values and what’s important to you • learning to be in the present moment • developing the ability to look at your thoughts, behaviour and actions from a more objective perspective • taking distance from negative thoughts and learning not to believe them • deciding which actions to take in order to move in the direction of your chosen values • coping with emotional discomfort rather than struggling to get rid of difficult

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We can’t get rid emotions in unhelpful of difficult thoughts ways such as selfand feelings, but we harm, distraction or substance misuse can manage them Research is showing that better. this is a helpful model of therapy for people with MS, but also for their partners. In my opinion, it’s easier to understand and use than traditional CBT models, making it more suitable for people with mild cognitive problems, significant fatigue or people who are going through a relapse. To find out more about ACT visit mstrust.org.uk /a-z/ACT

I’ve been experiencing unpredictable changes in my mood because of my MS and can become angry or irritable unexpectedly. I live with my husband and two young children. What’s the best way to manage these mood changes so they don’t impact on family life? Jo says: Changes in mood can be due to a range of different psychological, biological, neurological and social issues, usually a combination of all these factors. It’s a good idea to get to know your own patterns. If you know that you are likely to struggle in the coming weeks, try to plan ahead. Commit to fewer activities and build in more rest and pleasure. Also make sure those around you are told a difficult time is coming so they can give you more support and encouragement. Make sure you communicate with your family when you are feeling brighter about what helps and hinders

I’m in my early 20s and I’ve just been diagnosed with relapsing remitting MS. I feel like I’m grieving for my lost health. Is this normal? Jo says: Yes, it’s very normal to experience feelings similar to grief and for a lot of people these go on for some time. It’s important to talk about your feelings. Some researchers have likened receiving a diagnosis of MS to a bereavement resulting in feelings very similar to the grief response. Some believe grief occurs in stages. Probably the most famous formulation of the stages of grief was developed by Elizabeth Kübler-Ross. She proposed the key stages of grief are shock and denial, anger, bargaining to get rid of the experience and feelings, sadness and depression, and finally

when you are low or anxious. We expect people to read our minds and then feel disappointed when they don’t do what we need. Be specific For example, say, “When mummy gets low, it is hard to be enthusiastic about anything or even get out of bed. It’s not because I love you any less. It really helps when you come and find me and talk to me or show me what you have been doing”. Mood changes may be caused by a number of factors outside of your control but they are often exacerbated by how you think. Notice when you have thoughts like I can’t cope, it will never get better, why me, they don’t care. When you feel bad or behave in a way that is not ideal it is easy to respond to yourself in an unkind manner with thoughts of how bad and useless you are as a family member. However this will make you feel worse. Reflect on the kind of friend you would like to have

around when your mood is low and see if you can show yourself more compassion for your situation, Human treat yourself with beings are not kindness, get plenty straightforward; of rest and notice everyone is different, what you say about with a different yourself, don’t refer personality, past and to yourself as useless, life. stupid or a hopeless case, recognise you are doing the best you can. If you are able to be kinder to yourself, you will find it easier to be more patient with those around you. It is tempting to withdraw when you are not feeling great but then you miss out on the things that will make you feel better. Keep up with friends and regular social activities and give those around you permission to support you to go out, exercise and be social when you don’t feel like it.

acceptance. The problem with the idea of stages is that human beings are not straightforward; everyone is different with a different personality, past and life. These factors are all important in terms of how you experience a diagnosis of MS. Your reaction will depend on presenting symptoms and what your mind was expecting. Additionally, age of diagnosis, previous mental health conditions, social support and your knowledge about MS will all impact how you react to a diagnosis. If you hold the idea of stages tightly, people can end up feeling abnormal if they don’t experience each of these stages, or if they only experience sadness or if they stay angry for years. Many people feel they don’t ever accept their diagnosis, as to

them it means giving in. Everyone is an individual and whatever you feel is like many others. The best approach is selfcompassion. Try and understand yourself as a friend, be kind to yourself whatever you are feeling and don’t feel pressured to react in a certain way.

Jo Johnson worked in the NHS for 20 years before becoming a consultant neuropsychologist for several national neurology charities. She has a specialist interest in multiple sclerosis and has written books for both children and adults who are affected by long-term neurological conditions. One of her latest books, Shrinking the Smirch (2014), offers a practical approach for managing the physical and mental challenges that long-term health conditions can bring.

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

GE T I N VO LV E D

Kickstart your fundraising! Getting involved in fundraising can be a great way to experience new things and meet new people, as well as making a real difference for people affected by MS. Don’t know where to start? Here are five things you need to know if you’re planning a fundraising event or challenge

The MS Trust is here to support you

We have a team of very friendly and helpful fundraising officers at the MS Trust who are on hand to support you in any way they can. Get in touch if you are thinking about fundraising and we will provide you with a comprehensive fundraising pack, sponsor forms and any other materials you may need such as collection boxes, balloons, banners and T-shirts. Your fundraising officer can talk through any ideas you may have and advise on ways to maximise the funds you could raise. We can also help you get coverage in your local media and online to support your fundraising activities.

Involve everyone you know

Fundraising can be a great way for friends and loved ones to show support for someone with MS. Whether you have MS yourself or know someone who does, raising money brings people together and can be a very positive and uplifting experience. You may be surprised to see how many of your friends, family and acquaintances are willing to step forward and support your efforts. The further you spread the net, the more money you will bring in. So tell all your friends on social media, put posters up at the gym, contact your local community group and see if they’ll hold a cake sale, ask your employer if they will match the funds you raise. Don’t be shy, you are doing something really amazing to help other people who are affected by MS.

Holding an event can be lots of fun

What do you and your friends enjoy doing? You might like to hold a cake sale at work, plan a garden party or put on a gig or quiz night. You may even want to do something on a larger scale such as organise a gala ball or

Events can take a bit of planning, but if you contact our fundraising team we can help you.

golf tournament. If you are taking part in a sponsored challenge such as a cycle ride, putting on an event or two can be a good way to help you reach your minimum sponsorship and also raise awareness of what you’re doing. Events can take a bit of planning, but if you contact our fundraising team we can help you. There are lots of different ways you could raise money at your event such as selling tickets, holding a raffle or sweepstake, asking for donations, or selling cakes. You could rope in friends or colleagues to help you with the organisation too. We can advise on any licensing or health and safety regulations you may need to consider.

Create your own online fundraising page

Whether you are planning to shave off your hair, climb a mountain or give up chocolate for a month, we always recommend setting up an online fundraising page with Virgin Money Giving. This is a great way to collect sponsorship for any kind of fundraising challenge. It’s straightforward for your

One dear friend of mine, a lady who is in her eighties, took sponsor forms around our village!

Sue took part in a skydive My MS was diagnosed over 30 years ago. Although so many doors have closed for me, others have opened. Asking people to sponsor me was the hardest thing I had to do. It was the Queen’s birthday and we were invited to a tea party at a neighbour’s house. After checking with our hosts, I produced my sponsor form. I felt very embarrassed about it, but no one seemed to mind and needless to say, everyone was kind enough to sign it. I went home feeling elated. I emailed friends and relations and the word spread. The WI, Bowling Club, Bridge Club and the Church Conservation Group all contributed. One dear friend of mine, a lady who is in her eighties, took sponsor forms around our village! I watched the total going up on the internet, I felt so excited when there was another email telling me that someone else had given money.

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John trekked the Alps I was diagnosed with MS a few years back and from day one the MS Trust has always been there. I love doing something that challenges me and allows me to raise some funds. Having previously done a charity triathlon, a zip line at Everton’s ground and a parachute jump for the MS Trust, I signed up to do the Alps Trek which is a bit different, a bit harder. I do a bit of walking to keep generally fit, but not anything like this. Training has been fun and a good excuse to get out with the family and my mates. The fundraising went fantastically thanks to all my family, friends and work colleagues. Some of the highlights were a work quiz which brought in over £100, and Christmas and Easter cake sales that raised £140. But we smashed Training has been it all with a charity race night which fun and a good raised £1,742! excuse to get out with

the family and my mates friends and family to donate online, you don’t have to worry about collecting cash, and UK taxpayers can easily Gift Aid their donations which adds an extra 25p to every £1 they donate. When you set up your fundraising page, personalise it with a photo and the story of what you are planning to do and why. If people understand the reasons behind your decision to fundraise for the MS Trust, they are likely to be much more generous.

Pennies and pounds really add up

If you want to raise a chunk of money in one go, organising a collection day can be a really great way to go about it. You could approach your local supermarket and see if they’ll let you and a team of friends pack bags for donations. Or if you want to do a collection in your local town centre, just contact the local council for a free street collection licence. On a slightly smaller scale, placing a collection box in a local business premises can be a very easy way to bring some money in. The average collection box on a shop counter raises £30 every six weeks, so if you can convince any shopkeepers or pub landlords to help you support the MS Trust then the donations will come rolling in for very little effort!

Visit mstrust.org.uk/yourway or call 01462 476707 to get your free fundraising guide

Get involved There are lots of ways you can get involved and support our work helping everyone affected by MS. Here are just a few ideas. To find out more visit mstrust.org.uk/fundraising Big Blue Jump Weekend Be part of our biggest skydive weekend on 14 & 15 October! Take part in a thrilling skydive experience at your nearest airfield. mstrust.org.uk/bigbluejump

My Garden Party Open your garden or have a party with friends and family. Contact us for a My Garden Party Pack which includes a fundraising guide, poster, bunting and invitations. mstrust.org.uk/mygarden

Send MS Trust Christmas cards Order your cards from the MS Trust this year and every card you send will help to raise awareness of MS and the MS Trust. mstrust.org.uk/christmas

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 Ride alongside up to 50 other MS Trust supporters on this fantastic 4-day cycle from 6-10 June 2018, where MS Trust will be the Official Charity Partner. mstrust.org.uk/L2A

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

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

1 5 MIN U T E S W ITH MS TRUST SUP P ORT ER

Andy Merry Former Royal Marine Andy Merry works as a Yeoman Warder at the Tower of London. Since being diagnosed with MS last year he has raised over £27,000 by climbing the highest mountain in the Alps. We caught up with Andy just after he returned from his challenge in June How have you dealt with your diagnosis? It wasn’t unexpected and in fact it was quite a relief that it wasn’t something even more scary. I have MS and there is nothing I can do to change that and so I might as well play with the cards that I’ve been given. I have had a very full and active life so far and I don’t really see why this has to change. I will have to adapt the things I am able to do and maybe think about things more carefully, but apart from that I have no intention of going down without a fight and will continue to do the things I love.

How do you think your Royal Marines background has helped you cope? There are four elements to what we in the Royal Marines call the Commando Spirit: Courage, Determination, Unselfishness and Cheerfulness in the face of adversity, combined with the Commando Values of Excellence, Integrity, Self-Discipline and Humility. These attributes are drummed into a Royal Marines recruit throughout their training and beyond. To me MS is just another test to pass, another obstacle to get through.

Why did you want to support the MS Trust’s work? Within 30 seconds of receiving my diagnosis I was handed an information pack provided by the MS Trust. I went home and read every word and then spent the next few days on their website. The Trust was there quite literally from the start so it was the natural choice for me to support them in their wonderful work.

You have just climbed Mont Blanc with a team of friends and family. How was it? Hard!! Climbing Mt Blanc was a challenge I set myself a few months after being diagnosed. My first reason was selfish I must confess. I wanted to do something I love doing before MS stops me from doing so, the MS Trust was my next thought. I had trained very, very hard for this adventure and had no doubts about how hard climbing this monster of a mountain would be, however it’s only while stood up there, above the clouds, that you get a real sense of the

sheer scale of it. On one part we found ourselves scaling a 600m near vertical wall in the dark whilst wearing crampons and avoiding rock falls.

What were some of the toughest moments? Above 4000m it’s hard to breath and movement becomes very slow. My legs were tired and I lost the feeling and ability to lift my right leg, causing it to drag along. What I hadn’t realised is that my MS balance issues have bought about vertigo in me. Climbing the 600m wall and walking over thin ridges with considerable drops either side was not where I’d hoped to discover this new phenomenon. It was the stumbling and the vertigo that ultimately prevented us from reaching the summit. I was told by our guide that it would involve a 300 metre walk across a ridge that was at best, half a metre wide. In his words, “one slip and you will fall to your certain death”. As a team we talked it over and weighed up the options, but each time we arrived at the same conclusion… this is not worth dying for. We would continue to climb until we reached the ridge and then turn back. This was the toughest thing of all but it is a decision I do not regret. On our way back down my leg was giving way all the time and I was tripping, stumbling and falling, so I am comfortable that it was the only and right thing to do.

What has it meant to you to take on this challenge? I have enjoyed every minute, from all the training to the actual climb itself. It has taken my mind away from some of the down sides of MS and has given me a focus and a goal. I have loved spending time with my son Luke and my brother Simon as we climbed this huge mountain together.

Open Door August 2017 Facebook: facebook.com/mstrustuk Twitter: @mstrust

To find out more about Andy’s exploits and how you can support him visit mstrust.org.uk/ andy-merry

Cycle London to Amsterdam 6-10 June 2018 MS Trust is the Official Charity Partner for this fantastic challenge!

â&#x20AC;&#x153;It was a wonderful experience and one I will remember for the rest of my life.â&#x20AC;? Keith

Join our team of 50 cyclists riding to support people with MS on this picturesque four-day ride via Bruges and Breda to the Dutch capital

Call 01462 476707 or visit mstrust.org.uk/L2A Be part of something special and raise funds to help make sure no one has to manage MS alone Registered Charity No. 1088353 Open Door August 2017 Freephone 0800 032 3839 Acting as agents for Skyline Tour Operations, ATOL protected 10069

mstrust.org.uk info@mstrust.org.uk

iewed Fully rev ted and upda for 2017 Available ust late Aug

Making Sense of MS This pack provides introductory information on topics that may be helpful to anyone recently diagnosed with multiple sclerosis (MS) Every pack contains information on these key topics:

You can obtain optional information on:

• • • • • •

• • • • • • • • • • •

About MS What happens after diagnosis? Making the most of appointments Living well with MS Sources of information and support Publications for people with MS from the MS Trust

Telling people Working and studying with MS Relapsing remitting MS: an introduction Primary progressive MS: an introduction Secondary progressive MS: an introduction Treating symptoms Disease modifying treatments: an introduction MS and your feelings Research and MS MS and life choices A short guide to understanding my MS (to give to others)

MS diagnosis needn’t be the end of the world. But it is the start of a long, unpredictable journey. Registered charity no. 1088353

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T. 01462 476700 E. info@mstrust.org.uk www.mstrust.org.uk

Multiple Sclerosis Trust Spirella Building, Bridge Road Letchworth Garden City Hertfordshire SG6 4ET

Making Sense of MS can help you take the first steps. ND Folder.06.14.4K

It’s good to ask! The appointment is for your benefit so make the most of Sense MSabout anything that’s important to it. Don’t Making be afraid toofask you evenThis if itinformation might feel a of bita embarrassing. It’s very is part set of resources for people who likely are newly diagnosed with MS.the Yousame might like at our question that someone else has asked ortoalook similar introductory resource, Making Sense of MS, which answers the before so you are unlikely to take your health professional by questions most commonly asked around the time of diagnosis. Multiple Sclerosis Trust surprise. Spirella Building, Bridge Road Jane Havercroft Livingabout well withasking MS Don’t worry for information to be repeated, Letchworth Garden City Order code 443 Hertfordshire SG6 4ET explained in a different way or written down for you. It’s © 2014 Sclerosis Trustfrom the appointment with important thatMultiple you come away This edition published 2014 T. 01462 476700 everything you need. T. 0800 032 3839 This publication will be reviewed in three years. E. info@mstrust.org.uk All rights reserved. No part of this book may be produced, www.mstrust.org.uk stored in a retrieval system or transmitted in any form by any

Perhaps the family could lend a hand more around the house, you might employ a cleaner once a week or get the heavy grocery shopping delivered. Would colleagues at work take on a few things that you now find difficult or let you sit near the window if heat makes your symptoms worse?

Registered charity no. 1088353

www.mstrust.org.uk/makingsenseofms

7259 Making the most of Appointments 6pp Core.indd 1-3

Little Blue Book (introduction to MS) MS-444

means, electronic, electrostatic, magnetic tape, mechanical, www.mstrust.org.uk/makingsenseofms photocopying, recording or otherwise without written permission of the publisher.

Multiple Sclerosis Trust Spirella Building, Bridge Road Letchworth Garden City Hertfordshire SG6 4ET T. 01462 476700 T. 0800 032 3839 E. info@mstrust.org.uk www.mstrust.org.uk

Registered charity no. 1088353

Jane Havercroft However, you might Making the most of appointments your life. Order code 445

like to begin thinking about how you live

- How well balanced is your diet? This publication will be reviewed in three years. - Do you drink too much alcohol or take recreational drugs? All rights reserved. No part of this book may be produced, - Do you exercise enough or has MS affected what exercise stored in a retrieval system or transmitted in any form by any you electrostatic, can do? magnetic tape, mechanical, means, electronic, photocopying, recording or otherwise without written www.mstrust.org.uk/makingsenseofms permission of the publisher.

Multiple Sclerosis Trust Spirella Building, Bridge Road Letchworth Garden City Hertfordshire SG6 4ET T. 01462 476700 T. 0800 032 3839 E. info@mstrust.org.uk www.mstrust.org.uk

Registered charity no. 1088353

After diagnosis with MS, how can you get the best from your health professionals?

An introduction to multiple sclerosis for people who have recently been diagnosed When you have just been diagnosed with multiple sclerosis, you will probably have many questions about the condition and what it could mean for you. This introductory information should answer the most common questions about MS. The symbol will point you to further resources.

What is MS? MS stands for multiple sclerosis which is a neurological condition that affects the brain and spinal cord (the central nervous system). ‘Sclerosis’ means scarring or hardening of tiny patches of tissue. ‘Multiple’ is added because this can happen at more than one place in the brain and spinal cord. MS is a lifelong condition. It is not fatal and most people with MS live about as long as everyone else. It is not infectious or contagious so it can’t be passed on to other people like some viruses and bacteria. MS Explained

Is it common? MS is more common than many people imagine. Over 100,000 people in the UK have MS which is about one in every 600. Every week nearly 100 more people are diagnosed with MS and it is nearly three times more common in women than in men.

Who is in my MS team? Your MS nurse

Making Sense of MS

Many people are referred to see an MS nurse. The nurse

This information isin part of a set of resources forwith peopleMS whoand is likely to be specialises supporting people are newly diagnosed with MS. You might like to look at our your regular point of contact. Some MS nurses introductory resource, Making Sense of MS, which answers the also support peoplemost with other neurological so they may be questions commonly asked around theconditions time of diagnosis.

called a neurology nurse or something Jane Havercroft About the MS UK have an MS nurse service. Order code 440

similar. Not all parts of

There are also MS nurses who specialise in particular some of the disease modifying treatments, which are suitable for some people with This publication will be reviewed in three years. relapsing remitting MS. © 2014 Multiple Sclerosis Trust treatments, especially This edition published 2014

All rights reserved. No part of this book may be produced, Yourin MS nurse canorrefer you toinother services stored a retrieval system transmitted any form by any if you need them. means, electronic, electrostatic, magnetic tape, mechanical, photocopying, recording or otherwise without written permission of the publisher.

16/06/2014 16:13

7259 About MS 6pp Core.indd 1-3

440-About MS.02.15.4K

Although MS is a lifelong condition, people with MS can expect to live about as long as everyone else. It is rare for people to die directly from MS but those who are more severely affected tend to get more infections than healthier people and this can cause complications and decrease life expectancy. This means that it is important to keep as well as possible and get any infections, like urinary tract (bladder) Appointments with your MS team are key to managing infections, treated promptly. your MS well. They are opportunities to ask questions and If you already know someone with MS, you may be tempted discuss treatment options. The time available will be limited to assume that your MS will be the same as theirs. This is so this resource provides suggestions on how you can make very unlikely as everyone’s MS is different. This is true even if the most of your appointment. The symbol will point you you are closely related to the person. Also, the treatment and to further resources. care of people with MS has been improving over the years so people diagnosed with MS today can expect a better Howofdoes the healthcare system work? quality life than was possible previously. In an the idealgeneral world, public’s you could see professional Often, idea ofany MShealth is someone with wheneverwalking you liked, for as long liked. In Although reality, this significant difficulties or inasayou wheelchair. willcan notcause be possible resources arepeople alwaysnever limited. Also, MS some as disability, most need to MSaservices areon structured use wheelchair a regulardifferently basis. in different areas so it is a good idea to ask how the service works where you are. Many people with MS show no obvious signs of their The typesConsequently, of health professionals thatwould will support you will condition. most people not realise varysomeone according toMS yourif particular symptoms andatwhether that had they met them socially, work or you experience relapses or not. Some of them MS elsewhere. You may already know someone withwill MSbewithout specialists and some will be specialists in the management realising. of a particular symptom (such as pain), a particular treatment MS affects everyone differently so it is not possible to predict or a particular approach (for example, physiotherapy). exactly how your MS will develop. It is natural to wonder Somethe health professionals are basedwith at MS about future but being diagnosed MSspecialist may not centresyour which areso usually hospitals into supporting change plans don’tlarger feel pressured makingpeople life with MS decisions from a wide Other health professionals changing tooregion. soon after diagnosis. may be based in local hospitals or may travel there from Living well with MS the specialist centre, perhaps once a week, to run an MS Sources of information and support clinic. Some services are community-based so they may be Publications for people with MS from the MS Trust associated with a GP practice or another very local centre. Relapsing remitting MS: an introduction Consequently, you may find yourself going to several places Primary progressive MS: an introduction to see different members of your MS team. Secondary progressive MS: an introduction MS and life choices

16/06/2014 16:13

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

The young person’s guide to MS MS-137

Disease modifying drug therapy MS-90

Sex & MS: men MS-356

Are you sitting comfortably?

Managing your bladder MS-429

Sexuality & MS: women MS-213

Living with fatigue MS-204

MS-290

The kids’ guide to MS MS-286 Falls MS-249

Delivery details Title

First name

Last name

Job title (if health professional) Address

City/Town

Postcode

The MS Trust and our trading company value your support and promise to protect your privacy. To read our policy please go to mstrust.org.uk/privacy

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

About MS

Each of you brings something important to the conversation. Your health professional will have knowledge and experience in managing MS. You are the expert on your own values, expectations and priorities. Only you can say what is most important to you.

Practical support There may be times when you need some practical support. Asking for help can be hard at first especially if you are used to being very independent. However, a little help can go a long way particularly if you are having a relapse or a bad patch of symptoms.

After diagnosis, it is natural to wonder what MS might mean for your future.

An introduction to

Many people with MS are diagnosed at a time in their lives when they are making key life choices like whether to settle down, have children and build a career. Being diagnosed with MS may not change your plans so don’t feel pressured into making decisions too soon after diagnosis. Sources of information and support MS and your feelings MS and life choices MS and me – a self-management guide to living with MS

7259 Living Well with MS 6pp Core.indd 1-3

Making sense of MS

medicationisasthere prescribed. health professional to help so try not to let emotions get in theAlthough way of aprofessional productive conversation. help is important, self help is equally MS and your feelings important. Adopting a healthy lifestyle can be part of managing your MS well. Also, you can learn from others who are willing Makingtodecisions together share their experiences and tips for living with MS. Shared decision making is when you work with, and are Take You don’t have be adecisions superhero who deals supported by,control. health professionals to to make with everything or a victim of MS. You are a person about treatment, based perfectly on the best possible information. who happens to have MS. Many with MS say There may bejust times when you would like a lotpeople of support “I decisions have MS but doesn’t have can be a good in making andMS others when youme”. wantThis to be more mantra to live by. independent. Research and MS Of course, you are only one side of the equation. Some MS and me – a self-management guide to living with MS doctors and nurses are very willing to debate the most Tips for living with MS appropriate course of action, whereas others prefer to give clear-cut advice about what they think is right for you.

Making Sense of MS

You can become the expert on your own MS and take control of how you manage it. You will have support from health professionals, friends and family but it can be good to feel in the driving seat and to remain true to yourself.

How much will MS affect me?

People often wonder whether they did something wrong or if they could have stopped MS from happening to them. The answer to this is ‘no’.

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It is good to stay positive even though this may seem like a tall order sometimes. Each person can develop their own way of staying positive by focusing on what’s important to them and by learning new ways of dealing with the ups and downs that MS may bring.

How to be as well as possible after a diagnosis of MS

An introduction to

After diagnosis, it may feel like life has changed in a big way or it may seem exactly the same but with the “MS” tag added.

In many situations, asking three key questions works well. Secondary progressive MS (SPMS) They are: Some people diagnosed with relapsing remitting MS will 1. What are to mysecondary options? progressive MS. However, a very later convert small number of people willcons be diagnosed with secondary 2. What are the pros and of each option? progressive the outset. they maythat have 3. How do MS I getfrom support to help In mehindsight, make a decision is experienced relapses in the past but these may have been right for me? mild or their significance was missed. Alternatively, there Support be printed or brain onlineorinformation. It could may have might been lesions in the spine but they were mean referral another health with more located in areastothat did not leadprofessional to any symptoms. relevant Everyone expertise.needs It could having time to think things tomean look after their general health, both body Inover secondary progressive MS, relapses are missing andand then having to take or thingsyou have mind, butanother this canappointment be more important when infrequent. increases although theorrate at which this forward.been ItDisability might include involving friends family. diagnosed with a long-term condition like multiple happens varies from one person to another and there may sclerosis. This information explores changes in lifestyle Your health not be able tohow answer all your be periods of professionals improvement may or stability. will point you canNot help you live well The symbol questions. everything has with beenMS. discovered about MS Secondary progressive MS: an introduction further and theytomay not resources. be able to say what is happening, or may happen, to you. Sometimes, they may be able to find out the information thatbother? you need or can point you to other sources Why me? Why of information like the MS Trust. People often whether did something wrong For wonder some people justthey diagnosed with MS, life will carry on or if they could have stopped MS from to symptoms them. exactly as before. Others mayhappening find that the of MS The answer to this is ‘no’ as of MS of aretheir notlife, wellfor example, Keeping track have an impact on the the causes usual pattern understood so no one couldissues have advised youthat how mobility mean it’stoimportant to It can befatigue helpful or to keep some basiccan notes about appointments prevent your MS. paceand yourself more carefully. Consequently, and the ups downs of your MS. You might like tosome keep:people will orisneed, toactive make area changes. The causewant, of MS a very of research and it - A record of names, locations, phone numbers and email seems likely thatdiagnosed a number of different factors have to can come Being a long-term condition be the addresses for your healthwith professionals. together to triggertoMS. Some these factorsofare inthat the everyone is prompt look at allof those aspects lifewhat - Thearound dates of with brief notes on was world usappointments and there is increasing evidence thatweight, lack encouraged towas manage well: diet, exercise, stress, discussed and what decided. of sunshine and vitamin D play abalance. part. Other possibilities smoking and work-life Being as well as possible - Copies of letters to you orto your health professionals. include being exposed to certain common viruses and or relapses can make it easier deal with any symptoms carrying certain genes. However, one knows certain. - A simple symptom diary, whichno includes whenforyou started that come along. or stopped any medication, and records any relevant MS Explained changes have to made instantly and it’s best to events Any in your life likedon’t infections or be times of stress. be realistic about what fits into your lifestyle. Living well with Youmy could also notesthings you made when preparing for a treat Will family getthe MS? MS stillkeep means doing that you enjoy like having an is appointment, anytime notes made by and you friends. oras your a good with family MS not and considered an inherited condition it issupporter not during on theinmeeting and any information about MS. passed predictable conditions, Theabottom line isway thatlike it’s some your life and your such MS. It will be What happens after as haemophilia or muscular peopleof health up to you howdiagnosis? youdystrophy, manage it and with most the support well withfamily MS family, haveLiving no previous history friends of MS. and Some genesIt’s make it professionals, others. not possible for Sources of information andMS support more likelyanyone that someone gets butyou having these to say exactly what should do genes but weiscan offer Treating symptoms definitely not enough on its own as other factors are needed some suggestions. MS and your feelings to trigger MS. MS and life choices This means that the a risk of another family member getting Making start MS is still quite small. Getting your head around being diagnosed with MS can take Making Sense of MS MS Explained a while. It may seem unreal or like it’s happening to someone This information part ofmay a set of resources who Also, you may have else.is You need timefortopeople adjust. are newly diagnosed with MS. You might like to look at our to attend well as people you need to tell introductoryappointments resource, Making Sense of MS, as which answers the about your diagnosis. This may take priority to begin with. questions most commonly asked around the time of diagnosis.

Making the most of appointments

Living with MS in the longer term

Don’t worryMS Everyone’s asking isabout different. In fortypes, information all it’s to be repeated, impossible to explained a will predict howinMS differentover waytime. or develop written down for you.

445-Making the most of appointments.02.15.4K

Consequently, it is worth asking people for help rather than

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have, especially symptoms that seem invisible to others. It’s a two way discussion

Any consultation should a conversation Any consultation You don’t have to and waiting for them be to offer. Make yourbetween request you very specific, yourclear health professional. conversations, and reasonable As andwith theymost are more likely to understand should a bebe a superhero listeningwhat is as you important as talking. need and then say yes. For example, you could conversation who deals with You cansay able look after thewhat children for three hours on play‘Are youryou part by to stating clearly you’ve Saturday rather thanand ‘Could you look experienced, whatafternoon?’ you’d like to happen anything that after the between you perfectly everything children sometimes?’ you don’t understand or would like repeated. It’s important and your health of MS. to be openSources about how you feel, what need and what or a victim of information andyou support are.people Being realistic is important too. Telling professional. You are a person your priorities and studying withtheir MSown list of priorities Your healthWorking professionals may have As with most who just happensand these may A short to understanding mybe MS (to give to be guide different from yours. It will important toothers) see if they raise things that you hadn’t thought of or didn’t conversations, to have MS. know about. Perhaps some of their topics will overtake some Going forward listening is as of the priorities your ownarea list. of research and treatments for MS is aon very active important as improving all the You will have choices and You mayMS feelare emotional during thetime. appointment, for example, personal responsibility how you This manage you maycan feeltake angry or anxious about yourfor diagnosis. is your talking. MS such asand keeping up physiotherapy exercises an understandable common reaction. However, your or taking

An introduction to

Making Sense of MS

Often people don’t realise what impact symptoms can In the appointment

If you have new symptoms, or your symptoms become worse, then it is a good idea to contact your MS nurse, or other health professionals, for advice. Don’t feel that you have to put up with everything without support. Also, not all symptoms may be due to MS so it’s good to have them checked out and to go for all the usual health checks and vaccinations that you are offered. Relapsing remitting MS: an introduction Primary progressive MS: an introduction Secondary progressive MS: an introduction Treating symptoms Disease modifying treatments: an introduction

Living well with MS

You can become the expert on your own MS and take control of how you manage it.

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It consists of a little blue book answering immediate questions, a fuller pack with more information on core topics, and additional information sheets for areas that aren’t of interest to everyone. Order below or visit mstrust.org.uk/publications

443-Living well with MS.02.15.4K

Making Sense of MS gives you the info you need, at the time that’s right for you.

Most people are diagnosed in their 20s and 30s but it can be diagnosed in younger and older people. MS Explained

What are the symptoms? There is a wide range of possible symptoms but most people experience only a small number around the time of diagnosis and won’t go on to experience them all. They vary from one person to another and from day to day. This makes MS rather unpredictable and can take some getting used to. Some of the most common symptoms around the time of diagnosis are fatigue (a kind of exhaustion which is out of all proportion to the task undertaken), stumbling more than before, unusual feelings in the skin (such as pins and needles or numbness), slowed thinking or problems with eyesight.

16/06/2014 16:11