May 2013 Open door

Quarterly newsletter of the MS Trust

Open Door May 2013

Staying active with MS How therapists in Shetland have pioneered new ways of making exercise accessible

Tips on fitness & fatigue

Also in this issue Secondary progressive MS: new research

Better sleep: new research and therapies

The Secret Art Show: pick up a bargain!

Mr Motivator answers your questions!

Get involved!

Could you or someone you know join Team MS Trust?

This summer we are looking for new recruits! Could you or someone you know join Team MS Trust, take part in an awesome event and help support our vital work? There are loads of great ways to get involved – here are just a few ideas...

Cycle from London British 10K to Brighton London Run 8 September 2013

14 July 2013

Thousands of people are expected to take part and this is a chance to join them! No previous experience is required, although training for the 54-mile route is recommended. The spirit of the event is ‘taking part’ not ‘winning’ so you go as fast or as slow as you like.

The 6.2 mile route takes you past some of London’s most famous sights. We offer discounts for team entry so why not take part with friends or colleagues?

“It was such a fantastic day! I’m so glad I took part!” Isobel

Great North Run 15 September 2013 The Bupa Great North Run is the world’s biggest half marathon and the biggest mass participation event in Britain. Run 13.1 miles from Newcastle to South Shields with tens of thousands of others.

“Until people have done it for themselves it is hard to get across the positive, unique atmosphere of the day.” Andy

We will support you every step of the way!

Call 01462 476707 or visit mstrust.org.uk/events

Welcome to the first edition of the new-look Open Door!

The first edition of Open Door was published in the autumn of 1997. Back then it was just a short letter from the MS Trust, letting people know about the formation of an MS Nurse Forum, providing an update on the new disease modifying drugs and thanking supporters for running in the London Marathon.

A lot of things have changed since then, although the MS Trust is still supporting MS nurses, as well as providing the latest information about MS and we are very lucky to have fantastic support from people who fundraise for our work.

Open Door itself is now 16, and we want to make it an even more interesting and useful read, keeping you in touch with the latest news, research and practical therapies, but also letting you know more about our work and how you can get involved.

Over the past couple of months we’ve been sending out surveys, talking to many of you and holding meetings with MS health professionals, trying to find out how we can make Open Door even better. The response has been brilliant. We’ve heard that you really value our information and our mix of research updates and practical advice. But there are still ways we could make the magazine more readable. This issue is hopefully a first step on that path.

The editorial on the front page of the first ever Open Door concluded “The MS Trust is a small organisation with an enormous job to do, a job we mean to do properly. But we need your help.”

These words are as true now as they were in 1997.

I hope you enjoy Open Door and find it useful, and interesting. We would love to hear your comments: email info@mstrust.org.uk or call 01462 476700.

Best wishes

Contents 04

News

06

Research update

10

Recharging the batteries

12

Cover story: staying active with MS

MS Trust funds research into experience of secondary progressive MS; international collaboration to tackle progressive MS; MS Research Day; new drugs on the way for relapsing remitting MS; policy update New research into how older people learn to self-manage MS, two studies of how MS affects sleep, plus practical tips to help you wake refreshed Physiotherapist Alison Wiesner on practical steps to manage fatigue

14: An innovative project in making exercise accessible in Shetland 16: How Jane Dunham found new freedom in horseriding 18: Kenny Smith reveals the inspiration behind the MS Circuit Challenge at Goodwood

20

Get involved

22

15 minutes with...

Mr Motivator

Jump in June; My Garden for MS; the Secret Art Show; Tim Sigg’s Triathlon experience

The fitness guru and presenter of Move it for MS answers your questions

Pam Macfarlane Chief Executive of the MS Trust

Multiple Sclerosis Trust, Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk W mstrust.org.uk Registered charity no. 1088353

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

3

News

International collaboration to tackle progressive MS

Keep up to date with the latest news from the MS Trust Sign up for our weekly news alerts at mstrust.org.uk /newsalerts

MS Trust funds research into experience of secondary progressive MS “When I was told my MS was now secondary progressive, I felt I was dropped into a whole new world. It just made me feel like I was at the beginning of something all over again.”

The MS Trust is providing £50,000 in funding for research into people’s experiences of secondary progressive MS (SPMS).

The project will explore the experience of the transition between relapsing remitting and secondary progressive MS from the perspective of both the person with the condition and specialist health professionals.

Following a period spent defining the scope of the research, the project will run until the end of 2014, with the results published in an academic journal.

Studies indicate that, after 20 years, about one-half of those originally diagnosed with relapsing remitting MS will have found that the frequency of their relapses has decreased but disability is gradually increasing.

This transition to secondary progressive MS can be challenging. People say that it can feel like being diagnosed all over again, or feel that they

4

are being told there is nothing that can be done for them.

Psychologically, the change from living with a relapsing condition to one described as progressive can be difficult, even if there is little difference in the symptoms experienced.

The research will help us to improve the training we provide for health professionals who work with people with MS and also the information we provide for people with SPMS. In response to the survey advertised in the last issue of Open Door, more than 80 people shared their experiences of living with this type of MS and their thoughts on what information might be most useful. A book and webpages will be published in 2014.

Facebook: facebook.com/mstrustuk Twitter: @mstrust

The MS Trust joined scientists, clinicians and MS charities from around the world at the first scientific conference of the International Progressive Multiple Sclerosis Collaborative which was held in Milan in February.

The Collaborative aims to speed up the development of treatments for people with progressive forms of MS. “The conference was an unprecedented event,” said Amy Bowen, Director of Service Development at the MS Trust.

“It brought together people and organisations who are dedicated to unravelling the causes of progressive MS and finding treatments that will change the course of the condition.

The level of commitment amongst the delegates and the determination to collaborate mean the potential for real progress is greater than it has ever been before.”

MS Research Day The MS Trust attended the MS Research Day held by Barts and The London School of Medicine and Dentistry in London in February. Of the 300 attendees two thirds were people with MS. Presentations included: genes and MS; lesion formation; how MRI scans could monitor MS; how lumbar punctures could be made less painful; spasticity; and looking after bone health. “There used to be an impression that researchers were not always in touch with the people that their research aimed to help,” said Jane Havercroft, Information Officer at the MS Trust. “This research day shows how willing researchers are to directly engage with the MS community and how much this is welcomed.”

New drugs on the way for relapsing remitting MS Likely to be available from spring 2014

Policy update with MS Trust Policy Officer Alice Hamilton

When I tell people that I’m the policy officer for the MS Trust, Four potential new treatments new drugs separately, examining they often say “oh, so you write for relapsing remitting MS have value for money and other issues. all your employer’s health and completed clinical trials and NICE has begun preliminary work safety policies?” In fact, my role considers how health policy fits are now being assessed by the so that the appraisals can be European Medicines Agency completed as quickly as possible with current NHS services, and (EMA) and the National Institute after licensing. The NHS is legally how we can work within the for Health and Care Excellence obliged to provide NICE approved current structures to improve services for people with MS so (NICE). The treatments are: medicines to anyone considered that everyone, no matter where • BG-12 (dimethyl fumarate) eligible. The MS Trust will be (marketed as Tecfidera) contributing to the appraisals and they live, gets the best possible care. There is a long way to go to • teriflunomide (marketed as reporting new developments via achieve that outcome.

Aubagio) our website and in Open Door.

One point people often miss is • laquinimod In Scotland, similar that the NHS is different in every • alemtuzumab (marketed assessments will be carried nation, both in structure and in as Lemtrada) out by the Scottish Medicines what people with MS can access, In March, a committee of the Consortium (SMC). In Northern and divergences are growing. For EMA recommended that licenses Ireland, NICE guidance is example, the referral to treatment should be granted for BG-12 reviewed by the Department of and teriflunomide for adults with Health, Social Services and Public waiting list target: in England and Northern Ireland this is 18 relapsing remitting MS. Decisions Safety and, where appropriate, weeks; in Scotland, it’s 12 weeks; on laquinimod and alemtuzumab endorsed. are expected later this year.

The first of these drugs is likely whereas in Wales, it’s 26 weeks.

How to raise a concern about Once a drug has been licensed, to be available on the NHS from treatment you’ve experienced is NICE will evaluate each of the spring 2014. also very different. In England, you talk to PALS, the Patient Treatments in the pipeline for relapsing remitting MS Advice and Liaison Service; Treatment in Phase I Phase II Phase III Licensing NHS appraisal in Scotland, to PASS, the development Patient Advice and Support ATX-MS-1467 Service, hosted by Citizens Daclizumab Advice Bureaux; in Wales, it’s Ocrelizumab Community Health Councils; and Alemtuzumab in Northern Ireland, the Patient Laquinimod and Client Council.

BG-12 Teriflunomide Every issue of Open Door, I’ll take a look at new policy Treatment in Phase I Phase II Phase III Licensing NHS appraisal developments that might affect development To find out more about the new drugs, order the MS Trust you. Some will be positive, some Masitinib factsheets from the back page or visit mstrust.org.uk/pubs negative, some neutral. Sometimes Natalizumab one nation is more active in health Treatment in Phase I Phase II Phase III Licensing NHS appraisal policy than another. If there’s an development issue you’d like to see discussed, Natalizumab please get in touch: info@mstrust.

Fingolimod Masitinib org.uk or 01462 476700. Keep an Ocrelizumab eye on the Action for MS pages (mstrust.org.uk/action-for-ms/) for regular updates on new policy developments.

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

5

Research update

Keep up to date with research news Sign up for our weekly research email update at mstrust.org.uk/research-update

The path to self management What can we learn from people who have lived with MS for over 20 years?

Ploughman M, et al The path to self-management: a qualitative study involving older people with multiple sclerosis Physiotherapy Canada 2012; 64(1):6-17

People who have had MS for many years have vast experience of managing their condition.

However, this experience isn’t always effectively shared. This study in Canada interviewed 14 women and 4 men aged over 55, who had lived with MS for more than 20 years, to see what they had learned and how others could learn from them.

Three participants had relapsing remitting, two had primary progressive, ten had secondary progressive, one had benign MS and two did not know their type of MS. The participants described a gradual process with three key phases.

The MS recognition process

The struggle for a diagnosis was very stressful and could be prolonged. Fear was a common feeling during, and for the first few years after, diagnosis. Some had a sense of relief at diagnosis after feeling ‘in limbo’. A few wanted only their immediate family to know about their MS. Participants recalled disbelieving their diagnosis and ‘fighting it’.

6

The MS experience

Depression, pain and bladder and bowel incontinence were commonly described as the worst symptoms of MS. Some participants grieved over the loss of physical and social activities while others found new ways of staying engaged.

Some participants felt that stress, although bothersome, did not aggravate their MS, while others felt that it played a role both in the initial onset of symptoms and in later exacerbations.

Many participants expressed more concern about other critical health problems they might have and felt any reduction in overall health was down to these rather than to MS.

Moving toward selfmanagement

Participants described adapting and gaining knowledge and confidence. Although many felt competent in managing their MS, they also consulted a wide range of health professionals.

Participants valued collaborative relationships with health professionals. They relied heavily on, and held in high regard, health care providers they considered knowledgeable about MS. There was a common strong

Facebook: facebook.com/mstrustuk Twitter: @mstrust

desire to stay healthy and reduce the progression of disability.

The study concludes that learning about the wide range of MS experiences helped participants feel less overwhelmed by their initial MS diagnosis. Factors such as selfdetermination, social support, strong problem-solving abilities, and collaborative relationships with health professionals enabled people to adapt to and cope with their MS. The researchers hope to feed their findings back into MS self-management programmes, helping people with MS adapt to their condition and live healthy lives.

MS and me

MS and me is the MS Trust’s selfmanagement guide to living with MS. It contains practical tips on setting goals, problem solving and healthy living. To order your free copy see the back page order form or visit mstrust.org.uk/msandme

How does MS affect your sleep?

Two recent research papers have examined sleep problems in people with MS using very different approaches Bøe Lunde HM, et al Poor sleep in patients with multiple sclerosis PLoS One 2012;7(11):e49996

Pittsburgh Sleep Quality Index This study used the Pittsburgh Sleep Quality Index (PSQI) questionnaire to assess sleep quality and disturbances. This asks questions about the time you went to bed, how long it takes you to get to sleep, and how long you slept for. It also helps identify possible disturbances, including needing to go to the loo, snoring and pain.

90 people with MS (average age 45), who had been diagnosed for between 13 and 18 years, plus 108 people who didn’t have MS, (to verify the results), answered a postal questionnaire about their sleep and factors that might have led to sleep difficulties.

There were questions about bedtime routine, how often someone had difficulty sleeping, the quality of their sleep and the consequences of sleep problems such as difficulties while driving or socialising. The respondent’s bed partner or roommate also provided information about how much they had noticed them snoring, twitching and having restless sleep.

The answers to all the questions were scored to give an estimate of various sleep characteristics such as sleep quality, sleep disturbance and the effects on daytime activities.

The seven scores were added together to give the global score

and this was used to separate participants into good sleepers and poor sleepers.

The researchers also noted whether someone used medications and measured pain, depression, fatigue, daytime sleepiness and quality of life using appropriate questionnaires.

The researchers found that, on average, people with MS had a higher global score indicating a poorer quality of sleep. In addition, they found that two thirds (67 per cent) of people with MS were classed as poor sleepers compared with less than half (44 per cent) of the control group.

Poor sleep was often experienced by those who had moderate depression, were on antidepressant medication or disease modifying therapy or had a reduced quality of life. Sleep disturbance was more common in women and often associated with pain and fatigue.

You can find the full questionnaire online at mstrust.org.uk/sleep – you might like to fill it in yourself and see if it helps in identifying areas where you could improve your sleep.

For practical tips on improving your sleep see the feature on page 9

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

24 7

Measuring sleep disorder in people with MS Braley TJ, et al Fatigue, tiredness, lack of energy, and sleepiness in multiple sclerosis patients referred for clinical polysomnography Multiple Sclerosis International 2012;2012:673936

What do these studies mean for me?

The research shows that poor sleep is more common in people with MS than in the general population. It is important to identify sleep problems early and to treat the contributing factors where possible. Pain, depression, spasms and bladder problems are all common. You can order our factsheets on managing these symptoms from the back page. If fatigue is a problem, see the article on p10. If injecting one of the disease-modifying therapies leads to poor sleep, it may help to change to a different time of day – talk to your MS nurse.

To sign up for regular research updates by email visit mstrust.org.uk/researchupdate

Because fatigue is a common symptom in MS, people who report tiredness are often not referred for sleep studies to see if there is any underlying sleep disorder. This study looked at fatigue and sleep disorders including sleep apnoea (interrupted breathing during sleep) or restless leg syndrome.

It used a technique called ‘polysomnography’, an overnight test which records brain wave patterns, the amount of time spent in different stages of sleep, arm or leg movements, breathing and heart rate.

30 people with MS were compared with 30 controls (ie people without MS, to verify the results). All the participants had already been referred to a sleep clinic where they underwent polysomnography and completed

8

questionnaires rating symptoms of daytime fatigue.

It was found that more people with MS reported fatigue, tiredness and lack of energy and this was associated with decreased ‘sleep efficiency’ (ie the time spent asleep compared to the amount of time spent in bed). However, sleepiness was reported similarly by both groups.

The results suggest that people with MS are more sensitive to the consequences of reduced sleep efficiency.

This means that measures to increase sleep efficiency could improve daytime fatigue, regardless of whether underlying sleep disorders are present.

The research highlights the importance of considering sleep disorders as a cause of fatigue.

Facebook: facebook.com/mstrustuk Twitter: @mstrust

Open Door Practical tips for better sleep

Practical tips for better sleep If there are physical reasons for disturbed sleep you should discuss these with your doctor, or MS nurse if you have one. But if your sleep is disturbed for other reasons, consider some of the following points During the evening

• Try not to get overtired by doing too much.

• Cut down on stimulants such as tea, coffee, hot chocolate or cola drinks and try to drink them no later than six hours before bedtime.

• Nicotine is a strong stimulant. If you are a smoker, try to reduce the number of cigarettes you smoke in the evening.

• A glass of wine or beer early in the evening can be relaxing, but too much alcohol will worsen sleep.

• Avoid eating a heavy meal soon before going to bed.

• Avoid doing any mentally or physically taxing activities for around an hour before going to bed.

• Make a list of things that need to be done the next day. This can help stop you thinking about these things once in bed.

• If you have areas of concern and worry try to discuss these earlier on in the day rather than close to bedtime.

Bedtime

• Keep regular hours for going to bed and getting up.

• Try to keep the bed as a place for sleeping, not for other activities such as watching the television. (Sex is an exception to this rule!)

• Have a warm milky drink.

• Take a bath: the drop in temperature after a warm bath encourages the body to relax into sleep.

• Read or listen to quiet music.

• Do some gentle stretches or a relaxation exercise.

• Use aromatherapy techniques.

• Make sure that the room is a comfortable temperature – no more than 15°C. • If noise is a problem, try earplugs.

• Reduce the light in the room, for example by using a sleepmask.

If sleep won’t come

• Use deep breathing techniques or read a calming book.

• Use games: list all the countries starting with a certain letter, count sheep or imagine doing a very mundane task in great detail.

• Keep a pen and paper next to the bed to write down ideas and thoughts that are keeping you awake.

• If you are not asleep within 20 minutes, try getting out of bed and do a mundane activity until you feel sleepy.

Living with fatigue

These tips are taken the MS Trust booklet Living with fatigue. To order your free copy see the back page order form or visit mstrust.org.uk/fatigue

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

9

Open Door Recharging the batteries

Recharging the batteries Fatigue is often called a ‘silent symptom’ of MS, but it can be a severe hindrance if it is not managed well. Alison Wiesner, Occupational Therapy Clinical Specialist at Hertfordshire Neurological Service, explains how you can plan ahead to take your life back

What causes fatigue?

There are two main types of fatigue that can affect people with MS. Primary fatigue is directly caused by the neurological condition. Secondary fatigue is caused by other factors, including your medication, your environment, your lifestyle and diet, your mental health or your sleeping patterns.

Fatigue often falls into a ‘boom and bust’ pattern of feeling good, overdoing things, recuperating and then overdoing things again – see the table opposite. This can lead to a spiral of fatigue that gets worse over time. It’s important to try and manage your fatigue so you can escape the cycle of boom and bust.

What is fatigue management?

Fatigue management is another term for pacing yourself or conserving energy. It involves thinking about how to do a task in the most efficient way, using the least amount of energy. This can include thinking about your posture, your body mechanics and specific gadgets or equipment that can help you.

Think practically: by spacing out heavy and light tasks you can conserve your energy. And by deciding not to do some things at all, you will have more energy for things you really want to do!

Fatigue management techniques can help you plan your life with confidence and make informed decisions about how much you can take on.

What can help you manage your fatigue?

Short periods of activity are best, followed by frequent short rests before you get tired. You should aim for balance. Pace yourself with scheduled activities followed by regular periods of rest.

10

Facebook: facebook.com/mstrustuk Twitter: @mstrust

How can you begin?

Begin by making sense of the things you do. Decide what your priorities are, save your energy for things you care about and plan in advance to avoid wasteful movements. Try grouping your daily activities into three categories: • Things I like to do.

• Things I ought to do.

• Things other people think I should do.

Arrange that you do at least two things on your ‘Things I Like’ list in any one day. Work out why some activities are easier than others. Is there a solution? Here are some ideas: • Arrange your home and work environment to suit you.

• Look out for labour-saving gadgets that are easy to set up, or that can be left set up, without getting in the way.

• Don’t trust yourself to know when you are tired – do small amounts of activity followed by short rests. Use a timer if this helps.

• Relaxation techniques may help you calm your mind, so that you rest properly. Excess worry and anxiety increase fatigue.

• Set aside plenty of time for leisure and social interests.

Sleep

Are you getting enough sleep?

Sleep disturbance can make a huge difference in your fatigue.

Some people need more than others – 6-8 hours is average. But your sleep patterns vary a great deal as you grow older. What matters is what’s normal for you!

For tips on getting better sleep see page 9.

Open Door Recharging the batteries

A typical ‘boom and bust’ fatigue cycle

In the purple boom times there’s a tendency to overdo things, resulting in the blue fatigue periods.

Overall activity decreases over time.

Monday

Tuesday

Wednesday

Thursday

Friday

Saturday

Sunday

6:008:00

Breakfast, shower, dress

Kids up, breakfast

8:0010:00

Get kids ready for school

Sweep path, help Mum shop

10:0012:00

Shopping, gym

Laundry, missed lunch

Iron, hoover all house

12:0014:00

Made lunch, hoovered

Walk dog

No lunch

Paperwork

14:0016:00

Laundry

Gardening

Pain in leg, sat on sofa

Tried to clean bathroom

16:0018:00

Bath dog, clean bathroom

Tried to do dinner

Husband got dinner

Husband got dinner

Husband got dinner

Argument with husband

Make tea

18:0020:00

Make dinner

Rest

Kids playing up

Bed

Exhausted

Lay down

Rest on sofa

Tired, slept on sofa

Went to bed, toss and turn

Husband bathed kids

Bed

Bed

Bed

Bed

Bed

Bed

22:0024:00 22.0024.00

Bed

Relaxation techniques

Relaxation techniques can be great for helping you overcome fatigue. But they require practice.

Physical relaxation techniques include activities like yoga, pilates and tai chi, while mental techniques include mindfulness and meditation.

If you would like further information or discussion about fatigue management ask your GP or MS nurse to put you in touch with a local occupational therapist.

Slept in

Stayed in dressing gown

Up and dressed, sort kids

Tired

Got kids ready, breakfast

Shopping with family, tidy house

Breakfast, swimming with kids

Lunch, wash up

Roast dinner

Play tennis with kids

Family visit

Dusting

Entertain family

Move it for MS DVD

Our Move it for MS DVD includes a useful section on relaxation techniques and our booklet

Living with fatigue

Living with fatigue has much more on managing your energy levels.

For ordering details see the back page order form or visit mstrust.org.uk/moveit and mstrust.org.uk/fatigue

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

11

Open Door Cover story

Staying Active with MS In the past people with MS were often advised to avoid exertion altogether, but these days regular, moderate exercise is recognised as an important element in maintaining general health and well being. Summer can be the perfect time to try something new: check out some of our suggestions opposite. Over the page we find out about a pioneering exercise initiative in Shetland and talk to Jane Dunham (p16) about how horse riding has given her a new sense of freedom. If you’re still stuck for ideas, why not come along to the MS Circuit Challenge in Goodwood (p19) on May 12?

Why not try...?

Wheelchair rugby

MS Trust supporter Tony Hale competed at a high level of rugby, but thought he would never play again after being diagnosed with MS in 2003. He got back into the sport by training as a coach for wheelchair rugby and now he’s a player for the newly-formed Plymouth wheelchair rugby team, the West Country Hawks.

The team are on the lookout for new players, supporters or officials: see pitchero.com/clubs/ westcountryhawks

Cycling

Adapted cycling schemes give more people the opportunity to try out different types of cycles.

Most allow you to hire bikes for an hour or more. In Battersea and Dulwich Parks in London, you can hire conventional and adapted bikes so everyone can join in, and in Peterborough there’s a range of adapted bikes available for use in the city’s Nene Country Park as well as handcycling sessions on the athletics track.

12

Facebook: facebook.com/mstrustuk Twitter: @mstrust

Open Door Cover story

Archery

Tai Chi

Flying

The best way into archery is to contact your local archery club.

There are over 1200 clubs across the UK which often run have a go sessions at community events but most people start by taking a beginner’s course; clubs usually provide all the equipment needed to try out the sport.

Tai chi is a form of gentle exercise involving slow, graceful movements, which has become associated with stress relief and health improvement. It’s a great way to raise your activity levels gently and gradually, improve balance and general mobility, and increase muscle strength in the legs.

Aerobility provides flying lessons for people with disabilities, and instruction and qualification flight training to members. With specialised lifting equipment and adapted aircraft, even those severely affected

by MS can try it out. They operate from four airfields in Staffordshire, Gwynedd, Ayrshire and Hampshire.

Sailing

Biking

Hang gliding & paragliding

Whether messing about in boats, exploring the coastline or competing as a solo or crew sailor, sailing has a lot to offer.

RYA Sailability has lists of sailing clubs in the UK, including those which provide suitable facilities for disabled sailors. The Jubilee Sailing Trust operates two tall ships, the Tenacious and the Lord Nelson, which allow people of all physical abilities to sail sideby-side. The Jubilee Sailing Trust offers a variety of holidays, from one day sails in the UK through to ocean-going journeys.

See rya.org.uk and jst.org.uk

The Bike Experience is a new charity, based at Silverstone and RAF Odiham, which aims to help disabled motorcyclists ride again. They use motorcycling as a catalyst to further rehabilitation, increase confidence and improve physical strength, balance, co-ordination and stamina.

See tbex.co.uk

Flyability is project of the British Hang Gliding & Paragliding Association. They involve people with disabilities in all aspects of the sport and help people to train as pilots and instructors. They can help with specialist equipment if this is required and help fund tandem flights for those people who may be unable to fly alone.

For contact details for all these organisations, plus many more ideas see our Staying active pages at mstrust.org.uk/stayactive

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

13

Open Door Cover story

Opening the door to exercise Regular exercise can improve balance, mobility and confidence. But committing and sticking to it can often be a challenge. NHS Shetland physiotherapists Margaret Gear and Ruth Mahood found that access to group classes could hold the key

R

egular, moderate exercise is now widely recognised as an important element in maintaining general health and well being in people with MS. Many of us start the year with new resolutions and new gym membership. But when the initial enthusiasm has worn off, how do you keep exercise as part of your regular schedule?

As physiotherapists we wanted to make sure that people with MS had the same opportunities as everyone else. So in January 2012 we started a 10-week pilot in Shetland, hoping to establish a sustainable community exercise service for anyone with MS or any other neurological condition.

Identifying obstacles

Before we started we identified many barriers to people with MS taking part in regular exercise. In Shetland transport is a big factor.

Some people have to drive for two and a half hours and take two ferries simply to get to the nearest leisure centre! So we got help with transport from a couple of local charities.

There was also a certain amount of trepidation among potential participants. Some people were

14

worried that classes might be too difficult. Others had previously tried classes and had a negative experience.

Some people also had major problems with fatigue. We tried to manage this by talking to each participant before and after exercise to help them manage their own recuperation.

Crucially, in Shetland there was no opportunity for people with MS to exercise together in their local leisure centre. Physiotherapists could only offer time-limited blocks

Facebook: facebook.com/mstrustuk Twitter: @mstrust

of exercise, and people found it hard to motivate themselves for home sessions. So after our initial 10-week pilot at a hospital, we transferred the classes to Clickimin Leisure Complex.

Though this made the classes more accessible for many, it also raised other issues. For example, many people with MS also have temperature regulation problems.

They found most leisure centres too hot, especially after exercise.

So we provided ice water to help people cool down.

Open Door Cover story

“The exercises helped improve my balance and reduced my general fatigue.

The class itself improved my mental wellbeing by getting me out of the house, engaging with other people and having a laugh!”

Jeremy, a participant in the class

Improving mobility and confidence

Sustainable classes

Fitness instructors require special training for working with people who have MS and other neurological conditions. So we have arranged for two senior fitness instructors in Shetland to complete training in exercise prescription for long-term neurological conditions at Oxford Brookes University. Once this training is completed they will be able to take over the running of the exercise classes from the neurophysiotherapists, making the classes truly sustainable.

The project has now been running for over a year. Three groups are led by neurophysiotherapists in the leisure centre and cater for different The lengths people are levels of ability: wheelchair users, going to participate! people who are mobile with support and people who are mobile without support. Exercises are carefully tailored to each person to improve their balance, mobility and fitness.

The classes have been extremely well received. Despite the distances involved, almost two-thirds of people in Shetland who were eligible to attend actually came along. A survey found that everyone who came enjoyed exercising. 90 per cent found that their balance and walking improved after just 10 weeks of exercise.

This might mean someone can stand up to put their wellies on, or run for the first time in years. Often it means people have the confidence to go out walking, without worrying that they’re going to fall over.

Exercises for people with MS

Visit mstrust.org.uk/exercises for a downloadable range of exercises you can do at home

Alyson, a participant in the class, shares the benefits

There are simple tasks which I can now do again: closing my eyes in the shower without falling over, putting a pair of knickers on while standing up and not supporting myself; putting on socks without sitting down. I am not sure any of the class members realised how much our core stability had been improved until we shared these basic but significant changes.

“There are simple tasks that I used to be able to do, and most would take for granted, which I can now do again” My basic fitness and flexibility has improved. I was unable to go for several weeks and experienced rapid decline in my stability – scary how fast things get worse!

Although the class was not set up to be a support group, camaraderie and friendship has grown. Support and mutual understanding has become an unintentional benefit for members.

The physios have had an enormous influence on the success of the group. They work with individuals and the group as a whole, allowing each and all to feel important members.

Their knowledge of each of us individually means they can encourage appropriately and help develop individual programmes; this builds confidence and increases personal control.

I think all of us who attend are really grateful for the classes and the huge benefits it has brought to us on many different levels.

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

15

Open Door Cover story

The feeling of freedom Eight years ago Jane Dunham was diagnosed with primary progressive MS and eventually had to give up the legal career she loved. Taking up horse riding was initially therapeutic but she’s now found she’s rediscovered a lifelong passion

I

nitially I took up riding again for therapeutic reasons. I rode when I was able bodied. I was just an amateur. I rode for pleasure but horses were my passion. I didn’t ride for 10 years. There was no way I could ride and keep a job, with MS as well.

After I stopped working I became desperate to ride again. Not from the point of view of competing – just for the enjoyment of it and most importantly to keep me mobile for as long as possible. You also want to prove to yourself you can still do things, I suppose. The Riding for the Disabled Association were very helpful. Their motto is “It’s what you can do that counts”. This is so true!

I had never really been competitive but I was a driven person. I was determined not to let MS beat me. I used to go to the RDA Centre two or three times a week. It was a long, exhausting round trip and I found it difficult to get the riding school horses going forward. I realised that if I wanted to continue, I needed my own horse.

“remarkable – very special indeed”, and he is! If he feels me losing my balance he’ll adjust his way of going. He always looks out for me. He just knows!

Well intentioned friends tried to steer me away from having my own horse and then from competing. They were concerned it would be even more competitive in para dressage than in ablebodied dressage. However to my surprise we’ve got on really well.

Last summer we got to the RDA National Championships at Hartpury College.

There were around 800 competitors in various different disciplines. It was a big ask for a young horse but, as always, Bobbie rose to the occasion.

Bobbie Dazzler

I travelled the country but I found my little horse on my doorstep! Bless him, he is an angel. He always looks after me and is always willing to work.

Bobbie Dazzler means someone

16

Facebook: facebook.com/mstrustuk Twitter: @mstrust

Although we didn’t win I was really pleased he kept it together and we finished with two fourth rosettes.

The feeling of freedom

I have a fantastic trainer in Nicky Southall who I’ve known for nearly 20 years. She trains with Olympic Dressage gold medallist, Carl Hester MBE. Vicky Hill looks after my horse at her livery yard and is also my ablebodied rider. She sits on Bobbie at competitions and at home. If he’s a bit fresh she will make sure he is safe for me to get on. Nicky and Vicky make a great team.

I am the only disabled rider at Vicky’s stables. I turn up and I can’t really walk. Vicky gets my scooter out. I virtually topple out of the car onto my scooter and whizz round the yard! To get on Bobbie I grab the manege fence and struggle up a three-step mounting block. It is difficult as my legs don’t work very well and I have to lift each one up the steps in turn. It takes two people to get me onto the horse: one to hold him and one to put my foot in the stirrup and throw my other leg over the saddle. The horse is trained to stand very still. Nicky and Vicky have to do everything because of the impairment of function in my limbs. I pick up my specially adapted reins and then we’re off. I’m only walking and trotting round an all-weather

Open Door Cover story

“If I was able bodied I don’t think I’d find riding my horse as rewarding. We have a very special relationship.” surface but the feeling of freedom is just wonderful.

I ride for half an hour or so. I’ll have a schooling session and we often run through a test. We teach the horse to respond to my minute muscle and weight distribution changes. Nicky is my eyes on the ground. Even top riders rely on trainers. Dressage is very technical.

It gives me a real buzz.

A very special relationship

If I were abled bodied I don’t think I’d find riding my horse as rewarding. We have a very special relationship and I count my blessings that I can still ride. Our marks are steadily improving and this year we have qualified for the restricted Para Equestrian Summer Championships at Hickstead. My father said, “And who is going to ride the horse?” Me, of course!!

I have so much to be thankful for. Riding is what keeps me going. I help out locally with an RDA group and find this hugely rewarding. I feel enormously privileged to be able to ride and would recommend anyone to have a go. There are opportunities for disabled people at all levels – competitive or therapeutic.

For more about the Riding for the Disabled Association (RDA) visit rda.org.uk For many more ideas see our Staying Active pages at mstrust.org.uk/stayactive

You never know

what’s around the corner Jane’s sister Helen initially started fundraising to join her daughter on a skydive. Now she’s preparing to trek the Great Wall of China for the MS Trust My daughter wanted to do a skydive for her 21st birthday and in a silly moment I said, “Shall I do it with you?”. And she said yes! So we did it for the MS Trust. We raised £1,200 between us. It was really good.

We chose the Trust because of Jane really. They’d given her a lot of help and been helpful on the phone and with sending the leaflets and the books.

China is in September. I’ve never been anywhere like that before. I fancied doing it ever since Jane was diagnosed and we received the MS Trust’s newsletters. This year I just said to my husband “I really want to do it”. And he said, if you really want to do it then do it. I’d say the same to anyone else thinking about fundraising – you can do something amazing and raise vital funds for the MS Trust at the same time. I’m about halfway to my fundraising goal so far. I’ve been very busy organising raffles and quiz nights and I’ve got a concert coming up soon.

It’s going to be ten days in China, six days trekking, between three and seven hours a day. It’s only about 40 miles. I thought it was a lot further than

Jane Dunham, left, with her sister, Helen Beasley

that! But it’s hard work because you’ve got 200 steps at one point, and you have to carry a daypack, which is a big thing for me because I’ve got neck problems.

I just wanted to do it while I still could. Because you never know what’s round the corner, do you?

Helen’s next fundraising event is a guitar concert at the Artrix Theatre, Bromsgrove 7.30pm on 12 May. Tickets are £7 available from the box office or by calling 07872 942072 For more about the China Trek visit mstrust.org.uk/china

mstrust.org.uk/fundraising

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

17

Open Door Cover story

Marathon man 11 years ago Kenny Smith ran his first London Marathon to raise funds for the MS Trust. Since then he has trekked across Africa, cycled to Paris and set up his own fundraising day, the MS Circuit Challenge at Goodwood.

Here he explains how he came up with the idea and what keeps him so dedicated

was hard but it was nice getting over the finish. Then we paraded through the streets of Chichester.

I felt like a hero!

In 2002 I did the London Marathon for the first time. I was hurting for days but I was still buzzing.

By this time my sister’s MS was getting worse. I had raised money for a charity that I had no connection with, so I decided to apply for the marathon again and raise funds for the people I really want to help. In 2004 I was finally accepted. I had my own place and my relationship with the MS Trust was just about to begin.

In the 2005 London Marathon I raised £2,229 for the MS Trust.

I was well chuffed: a little bit of hurt for such a great cause. I took part again in 2006, 2007 and 2008 and 2010 as a golden bond runner and raised even more!

The MS Circuit Challenge is born!

I

believe in fate, and that we are all here for a purpose. Why do I raise funds and awareness for the MS Trust? Well, I believe that I was destined to do just that.

In 1990 I met my wife Sandra.

At the same time my sister Kathleen was diagnosed with multiple sclerosis. I didn’t know much about MS back then, but I knew it wasn’t good.

At the time doing anything for charity was something other people did. I had asthma and smoked 20

18

cigarettes a day. I used to joke that I was wheezing because I had just done the marathon!

“I was hurting for days but I was still buzzing...”

In 1991 my father-in-law asked me if I fancied taking part in the Royal Military Police March. I thought it might be a laugh. This was the first time I was involved in any fundraising: I raised about £50 for a local charity. The march

Facebook: facebook.com/mstrustuk Twitter: @mstrust

I was always looking for new ways to raise money for the MS Trust. In the summer of 2009 I had the idea for an event at the Goodwood estate where I work.

People love riding bikes around the Goodwood motor circuit so a cycling event seemed obvious.

But I also wanted something that families could take part in. Why not two events? A cycle or marathon in the morning and a family fun day in the afternoon? The MS Circuit Challenge was born!

After months of emailing, writing letters, begging and borrowing, the first MS Circuit Challenge went ahead in March 2010. I had loads of volunteers, friends, family, and staff from the MS Trust to help make the day a success. We had stalls, rides, raffles, and we raised around

Open Door Cover story

£6,000! That was it: the MS Circuit Challenge was a success.

I booked the track for 2011 straight away. It’s now become an amazingly popular annual event and over the last three years we’ve raised over £22,000.

Since we set up the Circuit Challenge I’ve run another London Marathon, completed the London-to-Paris cycle ride and trekked through the Sahara. This year I am running the London Marathon once again, doing the Three Peaks Challenge and climbing Mount Kilimanjaro. So far I’ve raised almost £30,000 for the MS Trust. I’d like to do three more London Marathons bringing my total to ten. My ambition is to help raise £100,000 for the MS Trust before my knees give up!

My life is mapped out

As I said, I believe in fate. If I hadn’t met my wife, then I wouldn’t have met her father and I wouldn’t have started doing the marches. If I hadn’t marched then I wouldn’t have even thought about taking part in the London Marathon. If I didn’t work for the Goodwood estate, then the MS Circuit Challenge wouldn’t exist.

And if my sister Kathleen wasn’t diagnosed with multiple sclerosis then I wouldn’t be raising funds and awareness for the MS Trust.

My life is mapped out: I have three lovely daughters, I have a fantastic wife. And I want to do as much as I can for the MS Trust.

Support the MS Trust

Could you be the next Kenny Smith? To find out about all the ways you could support the MS Trust visit mstrust.org.uk/fundraising or call 01462 476700

On your marks!

The MS Circuit Challenge at Goodwood on Sunday 12 May is a great way to be active this summer. Take part in the morning cycle challenge, or take a more relaxed approach in our family fun event in the afternoon.

Morning Cycle Challenge

We hope you can come along and join in the fun! There will From 9.30am to 1pm be plenty to keep you and your family entertained on the day Keen cyclists will have the including: opportunity to take part in a • Children’s rides and 50 mile cycle challenge – bouncy castles 21 laps of the motor circuit!

Face painting • Great prizes will be on offer to the winners of various categories, • Tombola and raffles • Burger stall, cake stall and and each rider will receive a picnic area medal. Full medical and technical DJ Wez Thompson will • support will be on hand. be our MC for the day, Entry price: £17.50 for advance keeping everyone posted registrations, £20 on the day. and entertained!

Afternoon Family Fun Event From 1.30 to 3.30pm

The Family Fun Event allows you to complete the 2.38 mile circuit ‘by any means’ you choose (though not by car!): walking, cycling, on roller skates, three-legged with a partner, in fancy dress – we’ll leave it up to your imagination.

The event is open to all ages and abilities and is all about having fun! There will be prizes for the best entries and a medal for all participants.

Entry price: Just £5 per person, £10 per family!

For more information about the MS Circuit Challenge at Goodwood see mstrust.org.uk/ goodwood

mstrust.org.uk/fundraising

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

19

Open Door Get involved

Find out how you can

Get involved The sky’s the limit Last year over 100 of you did sponsored skydives for the MS Trust, raising almost £83,000. That’s enough to pay for every copy of Open Door we send out this year! Jemma Fegan and her friend Laura Butcher raised over £1,800 in sponsorship. Here Jemma (below left) tells us why her jump was the best experience of her life.

I was diagnosed with MS after having no clue what was wrong with me. The MS Trust website really helped me come to terms with and understand the illness.

I had heard from others how the MS Trust had helped them and their families. Finding out I could skydive while contributing to an amazing charity was awesome and made me lose the fear factor completely.

It’s always a bit embarrassing asking people for money.

Luckily I had a huge circle of close friends and family, few of whom knew I had MS, but they were very supportive of the cause. I was also lucky to have a supportive boss, Andy Hainge, who ran the Reading Half Marathon to raise over £190 for my skydive. Stewart Melville Rugby Club collected money from social dinners and Laura held a ‘blue’ day at her work and baked cakes to raise money.

Doing the skydive really was the best experience of my life. I wasn’t scared at all. Free falling was unreal, the adrenaline you get, I can’t even explain. Then

My garden for MS Do you like tea, coffee, champagne, cake and spending time with friends and family?

drifting and seeing the scenery from that high up was just beautiful. The scariest bit was the training and being shown how to sit on the edge of the plane and fall out. But once you are up there you don’t even get a second to think about it.

I was full of adrenaline, energy and excitement for days! And so, so happy that I had achieved something like this and raised so much. I would do it again tomorrow if I could. I would recommend it to everyone! Even my granny!

Experience the thrill of a tandem skydive at an airfield near you!

Raise £395 and your jump will be free! Call us or visit mstrust.org.uk/jump

20

help us raise fu nd for the s MS Tru st

Facebook: facebook.com/mstrustuk Twitter: @mstrust

This summer we are asking you to hold a tea party in your garden. It can be as big or small as you like and we’ll give you lots of ideas for raising funds. If you don’t have a garden you could take your tea party to a local park, ask friends or family to use their garden or hold a tea party in your home.

If you’d like to be involved, visit mstrust.org.uk/ mygarden or contact us for a ‘My Garden’ pack.

Open Door Get involved

Secret Art Show If you are interested in buying art but don’t know much about it, the MS Trust’s Secret Art Show is a great place to start

Illness doesn’t have to mean the end of our ambitions Tim Siggs on his fundraising triathlon experience

If you have a keen eye, you could even pick up a mini-masterpiece for the bargain price of £45!

We are hosting one big online exhibition this year with over 750 unique and exciting artworks for sale. They are all the same size (12 x 12cm) and they are sold anonymously for £45 each, so you won’t know who the artist is until you receive the work in the post.

A number of high-profile artists have contributed artworks to this year’s show including Turner

Prize winner Richard Long CBE, Rebecca Campbell landscape artist Rex Preston, cartoonist Neil Kerber, textile designer Fiona Howard and Scottish artists Robert Kelsey and Tom Mabon.

The Secret Art Show has raised £66,000 since our first show in 2010 and we’d like to thank everyone who has donated art or bought from one of our exhibitions. With your support we hope to raise another £25,000 to help fund our work.

The 2013 Secret Art Show online exhibition will launch for viewing on 24 June and for sales on Monday 1 July at mstrust.org.uk/secretartshow

I’d always wanted to do a triathlon, but being diagnosed with MS makes you question many things about your life and what the future has in store.

I have drawn upon the MS Trust many times for information so when the opportunity arose to give something back, I knew this was something I had to do. On 23 September 2012 I took part in the Virgin London Triathlon, swimming 1500m, biking 40km and running 10km.

The training was hard but I did enjoy it. The motivation of doing it for the MS Trust made it easier.

Crossing the finish line drew a line under my diagnosis. It gave me a sense of relief and in a way allowed me to accept my MS but realise it’s not the be all and end all.

This has been one of the most challenging years of my life, but having this opportunity has meant that I’ve been able to focus on something positive and show to myself and others that this illness doesn’t have to mean an end to our ambitions.

The MS Trust has places in the London Triathlon on 27 and 28 July 2013. For more details call or visit mstrust.org.uk/londontriathlon

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

Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

21

Open Door Mr Motivator

15 Mr Motivator

minutes with

Mr Motivator aka Derrick Evans presents our hugely popular exercise DVD Move it for MS. He took a break from his busy schedule to answer a few questions from the MS Trust Facebook and Twitter communities

What’s your exercise regime like these days?

I try to do something every day.

But it’s changed over the years.

When you’re younger you tend to focus on aerobics. But as I get older I’m doing more weight training. I have no intention of ever looking like a 60 year old!

Did you know much about MS before working on the Move It For MS DVD?

I knew a couple of people with MS, but I didn’t really know any details. When the idea for the DVD came up I did my research and I was amazed that it takes so long to diagnose someone with MS. And the way it can change your whole life overnight.

Did you see the benefit of exercise during the filming?

Oh yeah. Some of the people taking part, they’d seen exercise videos but there hadn’t been anything specifically for people with MS. It highlighted that, no matter what stage you are at with MS, you can take part. I saw people trying hard and getting fatigued. But I also saw people with big smiles on their faces. The satisfaction they were getting, doing something that they previously thought was difficult or impossible, was incredible. It was one of the best videos I ever did! The others were done with a commercial view in mind, but this was done very much to inspire and help people.

22

Where do you get your trousers?

They’re called unitards. Leotards are for ladies, unitards for men.

I have a lady who puts them together. The brighter the better, and the tighter the better!

What’s your guilty pleasure?

I treat myself to M&Ms or a KitKat and some crisps!

How can people manage fatigue?

You have to listen to your body.

You have to rest as often as you can. Be satisfied with the fact that if you rest now, you can get a little bit more energy to continue later on. Don’t feel guilty about it. Because the fatigue is going to hit everyone very differently.

What’s your greatest achievement?

People still come up to me every single day. I can’t be in a restaurant without someone coming up to me and saying “Hello Mr Motivator!”. If I put a smile on people’s face, well that’s an achievement isn’t it?

What ambitions do you have?

I want to publish my book about my life up to 2005. A lot of people don’t realise that there were times when I was homeless.

I’d like to publish it, if only for my kids. And also to let people know what I’m really about. They see the entertainment side. But the deeper side is important.

What motivates you?

The shower that you get after exercise! That’s the best thing.

And my family of course.

What are good exercises people can do while sitting down?

One of the most important things is to be conscious of your posture. Make sure that you don’t lounge or let your shoulders fall forward or drop to one side.

Try sitting in front of a mirror and see what’s happening to your body shape. Double check what your body is doing and correct it. Your core muscles are also critical. If you flex your stomach a few times an hour – imagine someone’s about to thump you! – that tightens up your core muscles.

Facebook: facebook.com/mstrustuk Twitter: @mstrust

Mr Motivator with Stephanie Millward, paralympic swimmer, at an MS Trust event

Move it for MS

Our DVD Move It For MS, presented by Mr Motivator, includes a range of exercise routines you can do at home.

To order see the back page or visit mstrust.org.uk/moveit

Keeping the door open

T

he first issue of the MS Trust’s newsletter was published in 1997. The editorial on the front page was a bold declaration of our mission.

It concluded: “The Trust is a small organisation with an enormous job to do, a job we mean to do properly.

But we need your help.”

A lot has changed in the last 16 years, but those words are as true today as ever.

Over the past few months we’ve been talking to our readers, supporters and health professionals about how we can improve Open Door. We’ve been overwhelmed by how many of you value its mix of MS news, authoritative information, research updates and practical tips. We’ve found that Open Door acts as a vital link, connecting people to information about how life with MS can be made better.

It is thanks to donations from people like you that we can continue to produce Open Door. It currently costs us £120,000 each year to send four issues a year to over 20,000 people affected

by MS. With over fifty people being diagnosed with MS every week in the UK, we need your help to ensure everyone affected by MS continues to receive the support they need.

A gift of just £18 will ensure three families continue to receive this lifeline this year.

“Thank you for such a supportive and informative Open Door. I gain so much positive feeling from it. For my husband and me, it is our main support.”

Open Door reader

By returning the donation form opposite and giving whatever you can, you will help us to continue providing Open Door to everyone who needs it. Thank you for supporting the MS Trust.

Alternatively donate online at mstrust.org.uk/donate or call 01462 476700

Donation form I would like to make a donation of: £10

£20

£50

Other: £

Please make cheques/postal orders/CAF vouchers payable to MS Trust, alternatively please fill in your credit/debit card details: Card No. Security No. Issue No. Valid from Expiry date

(Last 3 digits on the signature strip) (Maestro only)

If you would prefer, we can take your donation over the phone on 01462 476700 or online at mstrust.org.uk/donate.

Your personal details [Title, First name, Surname] Address

Postcode Telephone/Mobile Email (in case we need to contact you about your donation)

Please tick if you are happy to receive emails from the MS Trust

Further information

I would like information about leaving the MS Trust a gift in my will.

Data Protection Act: MS Trust and our trading company value your support and promise to respect your privacy. The data we gather and hold is managed in accordance with the Data Protection Act (1998).

We will not disclose or share personal information supplied by you, with any third party organisations without your consent. We would like to keep you informed about the vital work we do; if you do not want to receive this information please let us know.

Make your gift worth more with Gift Aid

With Gift Aid, for every £1 you donate, we will receive an extra 25p from HM Revenue & Customs at no extra cost to you!

I am a UK taxpayer and I wish the MS Trust to treat this donation, and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations.

Signed: Date: ___ /___ /___ I confirm that I will pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6th April to 5th April) that is at least equal to the amount of tax that all the charities or CASCs that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand the charity will reclaim 25p of tax on every £1 that I give on or after 6 April 2008.

Please notify us if you change your name or address.

Resources from the MS Trust

Order form For a full list of publications mstrust.org.uk/pubs

Move it for MS! (DVD)

DVDs

The fun way to exercise with Mr Motivator and a group of people with MS. Suitable for people of all abilities, the DVD includes a warm up, exercises to improve balance and whole-body work-out, plus a post-exercise relaxation session.

Move it for MS – a DVD of exercises for people with MS Also visit the Exercises for people with MS pages at mstrust.org.uk/exercises and the Staying Active pages at mstrust.org.uk/stayactive

Books MS and me – a self-management guide to life with MS Living with fatigue Primary progressive MS exposed MS explained Disease modifying drug therapy – what you need to know Tips for living with MS

Tips for living with MS

Factsheets Regularly updated, we now have more than 20 titles including:

A compilation of nearly 150 useful ideas sent in by people with MS. The book contains practical suggestions on saving time and energy, getting around, making the most of benefits and getting equipped and more. There is also an extensive section of contact details for useful organisations.

Alemtuzumab (Lemtrada) BG12 (Tecfidera) Laquinimod Teriflunomide (Aubagio) Pain Spasticity and spasms Bladder management Depression

Publication leaflet The full list of titles available from the MS Trust.

All items are free unless stated, but if you would like to make a donation towards our costs we would be very grateful

Vitamin D factsheet

I enclose a cheque payable to the MS Trust

There is increasing interest in the role of vitamin D both as a way to reduce the risk of getting multiple sclerosis and as a treatment for MS. This factsheet covers some of the recent research.

If you Gift Aid your donation we can reclaim the tax!

I would like the MS Trust to treat this donation and all donations I have made for the four years prior to this year and all donations I make from the date of this declaration until I notify you othersie, as Gift Aid donations.

Signed Date

I confirm that I will pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6th April to 5th April) that is at least equal to the amount of tax that all the charities or CASCs that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand the charity will reclaim 25p of tax on every £1 that I give. Please notify us if you change your name or address.

Name Job title (if health professional Address

Postcode A copy of the MS Trust’s data protection policy is available on request.

Return to MS Trust, Spirella Building, Letchworth Garden City, Herts SG6 4ET

At work with MS

A book and an online resource that consider some of the ways in which MS might affect your work and answers questions such as:

At work with MS managing life and work

What are my employment rights?

Do I need to tell my employer?

Gail Townsend Lynn Fox

Second Edition