MS Matters July-Aug 2013 Cymru - Multiple Sclerosis Society

CYMRU 

JULY / AUGUST 2013 ISSUE 110 

Living well with MS www.mssociety.org.uk/cymru 

SEVERE MS 

Tackling the issues no 

one wants to talk about 

I’ve found 

it EASY to 

ADAPT 

Richard Izzard on caring 

for his wife, Ceinwen 

Wales 

update 

Find out what’s 

going on 

near you 

6o 

years 

Multiple Sclerosis Society 

Cymru 

Supporting 

children with 

MS – we fund 

new research 

PAGE 12 

MEET THE 

WALES 

TEAM 

How we’re 

fighting your 

corner P5 

WELSH CARE 

STANDARDS 

Our campaign 

to Stop the 

MS Lottery 

launches P6 

EMPLOYMENT 

RIGHTS 

Real life story: 

“How I beat the 

workplace 

bullies” P7

CYMRU 

contents 

July / August 2013 Issue 110 

Welcome from our 

Chief Executive 

FOR 16 YEARS, MS Matters 

has been keeping you 

informed about all aspects 

of MS. Refl ecting the 

experiences of people living 

with MS and packed with the 

latest news about the search 

for new treatments, practical 

advice about managing 

symptoms and details of our 

campaigns for better care 

services, it has always been 

a forum for lively debate. Our 

principal writers have MS, 

and their experiences inform 

and shape the content of the 

magazine. MS Matters is by 

you, for you. 

We thought it was time 

for a little refresh. So we did 

surveys, talked to people 

and found out what everyone 

wanted from their magazine. 

The lovely new design now 

incorporates your nation 

news and stories ahead of 

the regular features, UK-wide 

MS news and stories about 

people. As well as this we 

have lots of new sections, 

and have taken on your 

comments to explore in more 

detail the things you said you 

wanted to read about. We 

hope you like the result as 

much as we do. 

Beating 

the bullies at 

WORK 

Page 7 

News 

04 Wales update 

P4 The Social Services and 

Well-being Bill P5 Meet the 

MS Wales team P6 Stop 

the MS Lottery in Wales P7 

Fighting the workplace bullies 

08 MS news 

Our AGM, new respite care 

service, MS Life, and more 

12 Childhood MS 

We fund research into 

supporting children with MS 

One society 

14 Have your say 

Your letters, blogs and more 

36 

Kit 

review 

Looking at equipment 

that can make 

life easier 

20 

Traveller’s 

tales 

Indigo Hawk on settling for a 

peaceful life in rural Devon 

Real life 

24 First person 

Ayan Jamac is looking to meet 

other Somali people with MS 

26 Male carers 

Richard Izzard talks about the 

highs and lows of being a carer 

30 Fundraising 

Marie Sorroll on organising 

sponsored Zumbathons 

32 Canine Partners 

Anthony Stone on the process 

of getting an assistance dog 

Insight 

34 Managing MS 

The role diet and nutrition can 

play in symptom management 

38 Severe MS 

Launching our series on 

hard-to-talk-about subjects 

40 My Experience 

Arthur Goddard on what drives 

him to put pen to paper 

Patricia Gordon 

Acting Chief Executive 

of the MS Society 

MS Matters is available on CD, audio cassette and in large print. For details call 020 8438 0759. MS Matters is a 

Multiple Sclerosis Society publication ISSN 1369-8818. © Multiple Sclerosis Society 2013. Individuals or organisations wishing to 

reproduce, store in a retrieval system or transmit by electronic, mechanical, facsimile or other means any part of this publication 

should apply for permission to: MS Matters, MS Society, 372 Edgware Road, London NW2 6ND. Registered charity nos 1139257/ 

SCO41990. Registered as a company in England and Wales 07451571 Editor: Colin Richardson Senior Editor: Sarah Westlake 

Chief Sub-Editor: Marianne Smedley Creative Director: James Houston Senior Art Editor: Simon Goddard. MS Matters 

is designed by James Pembroke Publishing, 90 Walcot Street, Bath BA1 5BG. Tel: 01225 337777. Advertising sales: Contact 

Nima Azarian, Ten Alps Media Ltd, 020 7657 1824. Printed in England by Warners Midland plc. Articles signed by the authors 

represent their views rather than those of the MS Society. Mention or advertisement by the MS Society of products or services is 

not an endorsement by the MS Society, its officers or staff. 

www.mssociety.org.uk/cymru 3

CYMRU 

MORE 

INFO 

Find out about all our 

forthcoming events – 

call 029 2078 6676 

or email mscymru@ 

mssociety.org.uk 

LEGISLATION 

Fighting your 

corner on 

health reform 

How we are campaigning 

on your behalf on the Social 

Services and Well-being Bill. 

The Bill was introduced into the National Assembly for Wales 

IN JANUARY, the Welsh 

Government introduced the 

Social Services and Well-being 

Bill into the National Assembly 

for Wales. The government 

wants to simplify the law 

by bringing lots of different 

legislation together in one 

act. All health and social care 

issues are decided by the Welsh 

Government not Westminster. 

The Bill has several stages 

before it can become law. At 

every stage, the MS Society 

Cymru team will be trying to 

influence the Bill so that it 

improves services for people 

affected by MS in Wales. 

At present, we are working 

very closely with many 

other charities as part of an 

advisory group in Wales to 

get better services from the 

changes – we are stronger 

working together than on our 

own as one charity. 

Jamie Matthews, our 

Policy, Press and Campaigns 

Manager, representing the 

MS Society Cymru, is having 

regular meetings with senior 

politicians and the Health 

Committee at the National 

Assembly to fight our corner. 

A few areas of concern 

with the Bill are: 

Control of services – we 

believe that people with 

MS should shape their own 

services to reflect their 

needs. No one should be 

restricted by ‘one size fits all’ 

social services. The Bill still 

appears to centre services 

on local authorities and 

service providers rather than 

individual people. 

Direct payments – we believe 

people should be able to arrange 

their own care if they want to, 

with their own budgets. The Bill 

does not adequately promote the 

right to direct payments. 

Eligibility criteria – the 

Bill does not provide any 

information at the moment as 

to who is eligible for help and 

support. This is crucial for us 

to understand who will receive 

support under the new laws. 

For us to fight your corner, 

we need your views on the Bill. 

What should it include? How 

could services be improved for 

you? Please email mscymru 

@mssociety.org.uk or call 

029 2078 6676 with suggestions. 

MS SOCIETY CYMRU IS NFU CHARITY OF THE YEAR 

NFU Cymru has chosen MS Society Cymru as its charity to support in 2013. NFU 

Cymru, with nearly 15,000 members, represents most farmers in Wales. Mary James, 

Director of NFU Cymru said, ‘All our staff, from across Wales, were unanimous that MS Society Cymru 

deserved recognition for its work and our help in fundraising this year. We hope NFU Cymru members will 

help us raise as much money as possible through events and collections for this very worthwhile cause.’ 

4 MS Matters July / August 2013

Cymru update 

MEET THE MS 

SOCIETY CYMRU TEAM 

JOSEPH CARTER, Acting Director of MS Society 

Cymru. Joseph provides leadership and direction to 

the MS Society in Wales and is the principal adviser 

to the National Council. He is a member of the 

UK Executive Group and helps to lead the organisation. 

JAMIE MATTHEWS, Policy, Press and 

Campaigns Manager. Jamie is responsible 

for internal and external communications, 

influencing the Welsh Government and developing 

local and national campaigns. 

MATTHEW WITTY, Executive Assistant. 

Matthew has been with MS Society Cymru for over two 

years and is central to the organisation. He provides 

administrative support to the Director for Wales and 

wider team. 

OUR 

PEOPLE 

Working 

for you 

IESTYN EVANS, Fundraising Manager. 

Iestyn’s role is to fund the MS Society’s agenda to 

support people affected by MS in Wales. He is the first 

point of contact for fundraisers and supporters in Wales, 

whether individuals, groups, companies or trusts. 

URTHA FELDA, Area Development Officer (North 

Wales). Urtha works with the health board and local 

authorities in North Wales to ensure that people living 

with MS can access services. She also provides 

support to branches and support groups in North Wales. 

Virtual 

consultations 

could be set 

up in GPs’ 

surgeries 

TECHNOLOGY 

GP VIDEO 

CONSULTATIONS 

COULD BECOME 

A REALITY 

MID AND West Wales have 

poor access to consultant 

neurologists and MS 

nurses. For local people 

with MS, this often means 

long and tiring journeys to 

get the care they need. 

MS Society Cymru, with 

the support of Pfi zer UK 

Foundation, has an ongoing 

telemedicine project that is 

looking into how people can 

meet with their neurologist 

or MS nurse via real-time 

video conference. 

The virtual consultations 

would be set up in the local 

hospital or GP surgery and 

give people the opportunity 

to confi dentially discuss 

their needs and concerns 

with the experts. 

MS Society Cymru will be 

reporting back fi ndings to 

the Welsh Government in 

the autumn. 

SUE JONES, Local Support Development Officer. 

Sue supports local branches and support groups in Mid 

and South Wales. She is responsible for organising training 

events for Support Offi cers and new committee members, 

and is the main contact point for most branches. 

IAN FOLKS, Service Development Officer. 

Ian works closely with health boards and local 

authorities to ensure that people living with MS can 

access high-quality services. 

Facebook feedback Tell us what you 

think on the MS Society Cymru Facebook pages: 

www.fb.com/msscymru 

Tweet us Read the latest 

updates and get in touch on 

Twitter @mscymru 


Cymru 

STOP THE MS LOTTERY 

Father and son 

show how levels 

of MS care vary 

Our research reveals shocking 

variations in care for people with 

MS in Wales, as in the case of 

Ieuan and Aled Evans. 

Ieuan Evans, left, with son Aled 

ONLINE 

UPDATE 

For regular updates 

on Welsh news, 

fundraising and 

events go to www. 

mssociety.org.uk/ 

wales 

AT THE end of April, during 

MS Week, MS Society Cymru 

launched a report entitled ‘A 

lottery of treatment and care’. 

Based on a nationwide survey 

to which over 400 people living 

with MS in Wales responded, 

the report highlighted stark 

differences in service provision 

for people with MS in different 

parts of Wales, with rural areas 

falling further behind. 

Although we now have 

the figures to show that 

access to services 

and treatments 

is subject to a 

‘postcode lottery’ 

– what you get 

depends largely 

on where you live 

– nothing proves the 

point like a real-life 

story. Take that of father and 

son, Ieuan and Aled Evans. 

Aled lives in Cardiff and 

volunteers for the MS Society. 

He has relapsing remitting MS 

and is fortunate enough to 

get pretty good treatment. He 

receives the disease-modifying 

drug Tysabri once a month 

by intravenous infusion and 

has six-monthly consultations 

with his neurologist. He also 

sees an MS nurse at least 

once a fortnight and has 

weekly physiotherapy. 

Rural versus urban 

Aled’s father, Ieuan, on the 

other hand, receives a very 

different level of treatment. 

Ieuan has primary progressive 

MS and lives in Cardigan 

in rural west Wales. He 

doesn’t drive and relies on 

his wife, Gaynor, to take him 

everywhere. He has only seen 

a neurologist once in 20 years 

and his nearest MS nurse is at 

Moriston Hospital over 50 miles 

away. No treatment plan or 

support has been put in place, 

leaving Ieuan feeling isolated. 

Gaynor has sole responsibility 

for Ieuan’s care and the strain 

on her has been enormous. 

It is unacceptable in 2013 

that there should be such 

a huge variation in access 

to services and treatments 

between rural and urban areas. 

The MS Society Cymru has 

been putting pressure on the 

Welsh Government to improve 

things for everyone in Wales 

with MS, particularly those 

who live in rural areas. When 

we launched our report at the 

National Assembly for Wales, 

the Minister for Health, Mark 

Drakeford AM, acknowledged 

that more could be done to 

improve access to neurologists 

and gave his commitment to 

developing a delivery plan for 

neurological conditions. 

We will be keeping up the 

pressure to ensure that the plan 

becomes a reality. 

Photo: Eiona Roberts 

MORE INFORMATION The MS Society is calling for people with MS 

to have fair access to the treatments and services they need, when they need 

them, wherever they live. Read more about how the lottery of care affects access 

to medicines, care and support, finance and well-being online, where you can also 

join the campaign and download our report: www.mslottery.mssociety.org.uk. 


Cymru update 

Photo: Eiona Roberts 

EMPLOYMENT RIGHTS 

“I TOOK ON 

THE BULLIES 

AND WON” 

When things go 

wrong at work there 

is support available 

to help you fi ght 

back, as Barbara 

Stensland explains. 

WORKING IN a small, 

friendly office with only 

three other people, I felt 

secure enough to share 

with my colleagues that 

I was going through the 

MS diagnostic process. 

It was a fraught, anxious 

time, yet the routine of 

a job I loved gave me 

a structure during an 

otherwise chaotic and 

life-changing period. 

What happened next very 

nearly broke my spirit. 

It began innocuously 

enough. I was relieved 

of a minor duty ‘for my 

own good’. I appreciated 

their sensitivity and it let 

me concentrate on more 

important work. Slowly 

but surely further duties 

were stripped from me. 

One day, I was banned 

from driving; the next, I 

was forbidden to collect 

the post from downstairs 

‘in case I tripped’. I 

discovered that meetings 

were held without me 

and my projects were 

shelved one by one. 

Barbara fought back against the workplace bullies 

After my diagnosis 

was confirmed almost a 

year later, the bullying 

increased dramatically. I 

was ignored for days on 

end; conversation would 

halt abruptly when I 

walked into the office. 

‘I was sacked’ 

One Monday morning, 

out of the blue, I was 

summoned to the 

conference room. I was 

told that my job was no 

longer viable and I was a 

liability in the office. I was 

sacked. In their words, 

I would be better off at 

home. At home later that 

day, my world collapsed. 

The long, wearying MS 

diagnostic process and 

treatment, together 

with the bullying, had 

pushed me to the brink. 

I had changed from an 

outgoing, positive person 

to a fragile shell of my 

former self. 

For weeks I hid in my 

house in despair. But 

slowly, I began to get 

angry and I used this 

anger to gather every bit of 

information I could. With 

the support of my MS 

nurses, family and friends, 

I fought back. I found an 

excellent employment 

lawyer who served 

tribunal papers on three 

ex-colleagues. It was an 

emotional and draining 

fight and, at times, I was 

close to giving up. 

Months later, they 

settled out of court. I had 

taken on the bullies and 

won. It wasn’t easy, but it 

was worth it, for my selfesteem, 

my spirit and for 

others with MS who had 

gone through a similar 

experience and not been 

able to fight back. 

To anyone else facing 

this situation, my advice 

is: keep copious notes. 

Write down everything 

that happens, however 

small, with dates and 

details. And know that 

there is a huge amount 

of support – you do not 

have to do this alone. 

What the MS 

Society is doing 

In May, we organised 

an event, ‘Working with 

MS’, that saw a panel 

of people share their 

experiences of life and 

work with MS. The day 

included sessions on: 

fatigue management at 

work; access to work; 

managing workplace 

relationships; going 

back to work; and legal 

rights. We organise 

information days 

throughout the year on 

a number of topics. To 

fi nd out more, call 

029 2078 6676 or visit 

www.mssociety.org. 

uk/cymru 

‘MS Society Cymru held 

a ‘Living with MS’ event 

at the Liberty Stadium 

in Swansea on June 

15. The event was well 

attended and provided 

advice and support for 

people affected by MS. 

‘Work and MS’ and the 

‘Working yet worried’ 

toolkit are free from the 

MS Society. Call 

020 7791 9800 for 

copies or download 

from www.mssociety. 

org.uk 

The MS Legal Offi cer 

at the Disability 

Law Service can 

advise on workplace 

discrimination. 

Call 020 7791 9800 

(option 1) or email 

msadvice@dls.org.uk 

The MS Helpline is 

there for you to talk 

about any aspect of 

living with MS. Call 

0808 800 8000 (Mon to 

Fri, 9am to 9pm, except 

bank holidays) or email 

helpline@mssociety. 

org.uk 


ms news 

MORE 

RESEARCH 

See your copy of 

Research Matters 

for more research 

news. Or email 

supporterservices@ 

mssociety.org.uk to 

subscribe 

MS SOCIETY AGM 

Have your say 

The forthcoming AGM pack will 

give you the chance to infl uence 

the MS Society’s work. 

YOUR ANNUAL General 

Meeting (AGM) pack will be 

arriving shortly after this issue 

of MS Matters, including full 

details of how you can vote 

for new trustees and national 

council members. The AGM 

enables members to influence 

the work of the MS Society. 

Casting your vote 

Elections are also being held 

for trustees and council 

members in England, Northern 

Ireland, Scotland and Wales. 

Details of all candidates are 

included in the AGM pack. The 

Board of Trustees and council 

members are volunteers 

elected by the members of 

the MS Society to act on their 

behalf. Anyone who was a 

paid-up member on or before 

22 June, 2013 is entitled to vote 

at the 2013 AGM. Votes can be 

cast: by post, using the forms in 

the AGM pack, online at www. 

mssociety.org.uk/agm-2013 

or by attending the meeting. 

This year we also hope to trial 

Your vote counts in the AGM elections 

an email option, for members 

whose email addresses we 

have, to see if this is a popular 

and efficient alternative. 

Watch the AGM at home 

All members are invited to 

attend the meeting. However, 

if you are unable to attend, 

the proceedings will be filmed 

and will be broadcast live on 

our website. The recording will 

also be available for viewing 

after the AGM has taken place. 

Please use your vote and have 

your say. 

To book a place at the 

AGM, please complete the 

registration form at www. 

mssociety.org.uk/agm-2013 

or call 020 8827 0470. 

MBE for top 

MS nurse 

Nurse consultant 

Bernadette Porter has 

been awarded an MBE for 

her trailblazing work for 

patients with MS. 

Bernadette, who was 

interviewed in the last 

issue of MS Matters, 

has pioneered projects 

to help thousands of 

patients at The National 

Hospital for Neurology 

and Neurosurgery 

in London. In 2003, 

she became the fi rst 

nurse in the NHS to be 

appointed as an MS 

nurse consultant. 

Bernadette said: 

‘It was such a surprise 

for me to receive an 

award – and such 

an honour! 

‘I feel very humbled 

and continually feel 

inspired by the people 

I meet who face a 

challenging disease 

like MS and live their 

lives with such dignity.’ 

MS SOCIETY AGM The MS Society AGM takes 

place on Saturday, 21 September at the Royal College of 

Obstetricians and Gynaecologists in London. 

Bernadette Porter MBE 


MS news 

TREATMENT 

HELP YOUR GP TO 

LEARN MORE ABOUT MS 

We are working with the Royal College 

of GPs to raise awareness of MS. 

PEOPLE WITH MS have told 

us that they want their GPs to 

know more about MS. It often 

happens that a person with MS 

knows more than their GP. 

Appropriate and goodquality 

care depends on the 

understanding and knowledge 

health professionals have 

about MS. 

What we are doing 

Working with the Royal College 

of GPs (RCGP), we have 

developed an online e-learning 

course, including three modules 

on: the role of GPs in diagnosing 

MS; long-term outlook and 

management; and psychological 

and social issues for people 

with MS and their carers. 

The modules consist of 

information about MS, videoed 

interviews with people with MS 

and practical pointers that a 

GP can use when working with 

someone with MS. 

Since its launch in April 2012, 

the training has been completed 

by over 1,200 GPs. When doctors 

are assessed afterwards, there is 

a proven increase of 34 per cent 

in knowledge improvement 

about MS, something we’re 

really proud of. 

Through our services and 

volunteers, we continue 

to encourage all GPs to 

take the training and are 

looking at developing similar 

e-learning programmes for 

other care workers. 

Please tell your GP about 

the module. You can request 

a flier about it to pass on to 

them or your GP can contact 

us directly. In either case, email 

education@mssociety.org.uk 

or call Rhona MacLean on 

020 8438 0888. 

“Through our services and volunteers, 

we continue to encourage all GPs 

to take our training in MS” 

MS Life is 

Europe’s largest 

MS event 

What do you 

want from 

MS Life? 

MS LIFE, Europe’s largest 

event for people affected 

by MS, is returning to 

Manchester from 26 to 

27 April, 2014. So put the 

dates in your diaries now! 

Delegates came away 

from the event inspired and 

more informed about living 

with MS. Chris shared his 

thoughts on Facebook after 

the event: ‘The weekend 

has given us lots of good 

advice for the future. We 

came back revitalised and 

there was so much on offer. 

I’m looking forward to the 

next one.’ 

What would you like 

to see at the next MS 

Life? We’re busy putting 

together content and 

ideas now, so if you 

have any ideas of what 

you’d like to experience 

next year, including 

organisations, products 

and services, please 

let us know by emailing 

mslife@mssociety.org.uk 

or calling 020 8438 0941. 

Visit www.mssociety. 

org.uk/mslife to check 

out what happened at 

the last MS Life and to 

get a taste of what to 

expect next year. 

www.mssociety.org.uk 9


Dr Raj Kapoor: 

‘We must 

do more’ 

MS STUDIES 

MAKING STRIDES 

IN MS RESEARCH 

Dr Raj Kapoor explains how 

your donations are moving us 

closer to a breakthrough. 

ONLINE 

UPDATES 

For regular research 

and MS Society 

news, visit www. 


ms-news-research 

DR RAJ Kapoor, Consultant 

Neurologist at the National 

Hospital for Neurology in 

London, has explained why he 

thinks we are closer to a future 

free from MS. ‘I’m convinced 

there is a breakthrough waiting 

to happen,’ he says. ‘The MS 

Society are funding so many 

promising projects, something 

has to give relatively soon.’ 

One of the projects Dr 

Kapoor refers to is a 

clinical trial of the 

drug phenytoin that 

he himself is running 

and which is now 

underway. You might 

remember reading 

about phenytoin in 

MS Matters last year 

when we launched a 

direct appeal for funds to 

support the trial. The drug 

has been used as a treatment 

for epilepsy for 60 years 

and is now being investigated 

as a neuroprotective 

treatment for MS. 

Phenytoin works by blocking 

ion channels inside nerve 

cells, which has the potential 

to protect nerves from further 

damage. This makes phenytoin 

an especially exciting prospect 

for people with progressive MS. 

Dr Kapoor’s phenytoin trial 

is one of many projects we 

fund that focus on finding and 

testing treatments for people 

with progressive MS, an MS 

Society research priority. 

Your support for this project 

has been overwhelming. Our 

donors and members have so 

far raised over £335,000 to aid 

this and other projects that 

could provide the breakthroughs 

of the future – thank you. 

Over the past 10 years, 

treatments for relapsing remitting 

MS have come a long way. Dr 

Kapoor says, ‘When I became 

a consultant in 1994, there 

weren’t any disease-modifying 

treatments for people with MS. 

Today, I’m pleased to be able 

to offer many patients effective 

ways to alleviate some symptoms 

and to reduce the number and 

severity of the relapses associated 

with relapsing remitting MS – 

but we must do more if we are 

to bring forward the day when 

I can give every patient the 

treatment they need.’ 

Carers challenge 

politicians 

In June, the MS Society 

joined forces with our 

Carers Week partners, 

including Carers UK and 

Carers Trust. Carers Week 

raises awareness of the 

challenges carers face 

and celebrates the vital 

role they play. A key part 

of the annual campaign is 

talking to policy-makers. 

On 10 June, Emma 

Darkins from our Policy 

and Campaigns team 

joined carers Sally Slugg 

and Brian Stones, and their 

respective partners Barry 

and Linda, at the Carers 

Week speed-networking 

event in Westminster. 

Brian and Sally spoke to 

a number of MPs about 

the impact of caring on 

health and well-being, and 

the little fi nancial support 

that is available. They also 

challenged the Minister 

for Care and Support, 

Norman Lamb MP, about 

respite care, saying that 

designated money is 

simply not getting through. 

Norman Lamb MP (standing, left) 

meets the speed-networkers 

INSPIRED TO HELP? If you would like to find out how 

you can help fund the research projects of the future, please get 

in touch with Charlene Vallory, by emailing cvallory@mssociety.org.uk 

or you can call 020 8438 0717. 



SERVICES 

New respite care service 

for people with MS 

Thinking about taking a short break? 

Active Assistance is offering a specialist 

MS-focused respite care package. 

ACTIVE ASSISTANCE, a live-in 

care company, has developed a 

new home respite and holiday 

care service for people with MS, 

as a result of working with the 

MS Society. 

The new service enables 

people with MS to access 

high-quality live-in care 

services for short periods of 

respite care. Active Assistance’s 

staff have received specialist 

training about MS from the MS 

Society to ensure their carers 

have a true understanding of 

MS in order to provide the very 

best support. 

Following an assessment, 

clients purchase a period of 

care, which can be from a 

minimum of two nights or 

for as long as you require. 

The care can be delivered at 

home or away (in accessible 

accommodation). 

This specialist MS service is 

available to people who live in 

England and Wales as either: 

a live-in service in your own 

home; or a holiday service that 

enables you to take a carer with 

you wherever you go in the UK 

or overseas. 

The service is expected to 

be available for residents of 

Scotland later this year. 

For more information 

or to discuss your specific 

needs contact Active 

Assistance on 01732 779353 

or see their website at 

www.activeassistance.com. 

The MS Society’s Short Breaks 

and Activities Fund can provide 

grants for the costs associated 

with short breaks and holidays 

with care. To find our more and 

to apply, call 020 8438 0700 

and ask for a member of the 

grants team or email grants@ 

mssociety.org.uk. 

Some MS 

researchers 

are based at 

Bournemouth 

University 

Effective fatiguemanagement 

developed 

RESEARCHERS FUNDED 

by the MS Society and 

based at Bournemouth 

University and Poole Hospital 

NHS Foundation Trust have 

developed a highly effective 

method to help people with 

MS manage their fatigue. 

The fatigue-management 

programme, named 

‘FACETS’, incorporates 

‘energy effectiveness 

techniques’ – such as ways 

of working that maximise 

the energy people have 

– alongside cognitive 

behavioural strategies, 

helping participants to learn 

helpful ways of thinking 

about fatigue. 

A team of researchers 

led by Professor Peter 

Thomas at Bournemouth 

University Clinical Research 

Unit found that 40 per 

cent of participants who 

received FACETS in addition 

to their routine care had a 

meaningful improvement 

in fatigue levels compared 

with 19 per cent of those 

who received current local 

practice only. 

People with MS who 

are interested in receiving 

FACETS should speak 

to their local healthcare 

professionals (physios, OTs, 

MS nurses). You can fi nd 

more information at 

www.mssociety.org.uk or 

by calling the Info Team on 

020 8438 0799.

Research focus 

CHILDREN WITH MS 

New research into 

supporting children with MS 

What’s it like being the parent of a child with MS? We are funding vital 

research that aims to answer this question and many others. 

From left: 

Sandra, Sam, 

Lucy and 

Ian Blyth 

SOMETIMES IT is said that 

more children and teenagers 

are being diagnosed with 

MS than ever before. But 

while there is no clear 

evidence that this is so, it 

is clear that the needs of 

children and young people 

with MS and of their families 

have been overlooked. 

It is estimated that 

between three and 10 per 

cent of people with MS will 

experience symptoms of 

MS before the age of 18, 

although the true number of 

people with childhood-onset 

MS remains unclear due to 

limited data. 

However, there have been 

few studies that have looked 

at what life is like for families 

of children with MS or what 

might be the best ways of 

providing help and support. 

Two Canadian 

studies have 

highlighted the 

difficulties young 

people face in 

getting used to 

symptoms, taking 

their medication, 

coping with 

relapses and 

coping with 

school work, but 

there appear to 

be no studies 

that have looked 

at parents’ experiences of 

supporting a child with MS. 

It is also not clear how 

services are organised for 

children and young people 

with MS in the UK and 

whether they are meeting 

families’ needs. 

The MS Society is funding 

research that aims to answer 

these and other questions 

about the support needs 

of families where a child 

has MS. Denise Hinton and 

Sue Kirk at the School of 

Nursing, Midwifery and 

Social Work at the University 

of Manchester are running 

the two-year project and are 

looking to talk to children, 

young people and their 

parents or guardians. 

If you are interested 

in taking part, please 

contact Denise Hinton on 

0161 306 7332 or denise. 

hinton@manchester.ac.uk 

for more information. 

Photos: Graeme Allison 

OTHER RESEARCH We are also funding – with Action Medical Research – 

a five-year project that aims to further our understanding of the causes of childhood 

MS and how MS affects children. It is led by Dr Evangeline Wassmer at Institute of Child 

Health, Birmingham Children’s Hospital. Find out about this and all our research projects 

at www.mssociety.org.uk/ms-research or call the Info Team on 020 8438 0799. 


Research focus 

FREE 

GUIDES 

‘Childhood MS – A 

guide for parents’ 

and ‘Education 

for children with 

MS in Scotland’ (a 

factsheet from MS 

Society Scotland) 

can be downloaded 

from our website 

or you can obtain 

copies by calling 

020 8438 0799. 

CASE 

STUDY: 

The Blyth 

family 

SAM BLYTH was 

diagnosed with MS when 

he was five years old. Now 

nine, he lives in Dumfries with 

his 11-year-old sister, Lucy, 

his mum, Sandra, a part-time 

school assistant, and dad, Ian, 

a self-employed wood-cutter. 

Sandra talks to us about the 

impact of Sam’s MS on their 

family life. 

How is Sam doing? 

He’s doing OK at the moment. 

His daily symptoms lately are 

severe tiredness, sore, stiff legs 

and his memory is awful. He 

has Rebif injections three times 

a week. He dreads them. The 

injections can, of course, be 

very sore, and now he’s getting 

bigger, he’s very embarrassed 

about his red site-marks – when 

getting changed for PE at school 

or when we go swimming, he 

feels people stare. 

What support do you have? 

We have no MS nurse, we only 

have Sam’s local consultant 

and his fantastic neurologist 

at Edinburgh’s Sick Kids 

Hospital, Dr Kamath Tallur. 

Kamath is the person who 

keeps me sane; he’s on the end 

Lucy is a supportive sister to Sam, who has MS 

of the phone when anything 

worries me about Sam. 

I work at Sam and Lucy’s 

school. The school is great: 

they have a lift there and Sam’s 

been told to use it whenever 

he needs to; he does PE, but he 

can stop and rest whenever he 

wants. The teachers all know 

about his MS. If his tiredness 

gets real bad or his symptoms 

flare up, I keep him at home for 

a rest and they are all fine about 

it. There’s a system in place at 

school if – God forbid – he has a 

sudden MS attack. 

What support would you like? 

Well, I would like more gettogethers 

with other families. I 

don’t mean a fun day out every 

year as I know it’s costly, but 

talking to other families is what 

we parents need and also for 

the kids to get together to meet 

other kids with MS. It’s very 

lonely; no one understands how 

we feel except other parents. 

How much do Lucy 

and Sam know about MS? 

Lucy is great – she knows about 

Sam’s MS and how bad MS can 

be. She asks questions so I tell 

her the truth. Lucy knows we 

love her and Sam 100 per cent 

the same, but when Sam’s ill 

or showing signs of a flare-up, 

then we need to give him 

more attention. 

Sam knows he has MS, but 

we haven’t told him how bad 

it could be. He’s only nine and 

he’s too young to worry about 

the ‘what ifs’. He knows that he 

will need medication in some 

form forever or until a cure is 

found. He says he wants to be a 

doctor when he grows up so he 

can find a cure. 

How are you coping? 

I worry and cry a lot over 

Sam having MS. I go through 

stages of thinking it’s going 

to be OK, then some days it 

hits me that my little boy has 

MS and then I get scared and 

worry. Ian is more positive 

than me. We don’t talk much 

about it together and it can 

cause arguments. 

Sam’s diagnosis totally 

changed me as a person. I 

know how very lucky we are 

to still have him. Since the 

diagnosis, we seem like we 

are very bonded. We all went 

through total hell but as a 

family we are stronger. 


The place to share your views and experiences 

GET IN 

CONTACT 

Email: msmatters@mssociety.org.uk 

Facebook: www.fb.com/MSSociety 

Twitter: @mssocietyuk 

Post: MS Matters, 

372 Edgware Road, 

London NW2 6ND 

MS MATTERS 

IS ALL 

ABOUT YOU, 

so please let 

us hear your 

views via 

email, post, 

Facebook or 

Twitter 

Not a Facebook 

or Twitter user? 

You can still 

talk directly to 

other people 

about MS on 

our website 

forums at www. 

mssociety.org. 

uk/forum. 

Maria Hyland featured in a recent issue of MS Matters 

YOUR LETTERS 

FACE YOUR FEARS 

MY THOUGHTS on the letters in MS Matters 108 

about an interview with Maria Hyland in 107. The 

repliers are upset about her use of some words 

which they fi nd offensive and believe these words are 

pointed at them, the readers. 

I fi nd it great that M J Hyland expressed her fears 

and how she overcame them. She writes only about 

herself and does not belittle anybody else. 

I write as an MS support volunteer and somebody 

who had to give up his job because my MS stopped 

me fulfi lling my role in my organisation. I am often 

confronted with strong language. Shall I walk away 

from people (including myself) who have got fears 

similar to the ones Maria Hyland describes? No, 

I believe listening and trying to fi nd a solution is the 

only way. 

—Helmut Pohl, North Yorkshire 

YOUR TWEETS 

What you had to say 

about Carers Week 

@here4carers 

How can you help a 

carer? Just be there ready 

for when they want to talk. 

We all need to offl oad 

sometimes #preparedtocare 

#carersweek 

@PatBlalock 

A huge workforce who 

are generally unpaid 

& unacknowledged. 

They save this country 

a fortune. #CarersWeek 

#preparedtocare 

@dragonmisery 

#carersweek Caring means 

learning the lyrics to all Doris 

Day’s songs & becoming 

knowledgeable abt old fi lms 

so I can share with mum 

@sophie_kside 

My grandma cared for 

husband with dementia 

and daughter 40 miles 

away with MS. In 

practical terms she 

couldn’t have been more 

#preparedtocare 

We asked you via our 

Facebook page: how 

will PIP (Personal 

Independence Payments), 

the benefit that will 

replace Disability Living 

Allowance, affect you? 

Adrian: Every day, 

PIP worries me. 

I have had most of the 

paroxysmal symptoms, 

causing me to take time 

off work – a test one day 

would show nothing but a 

day later I couldn’t even 

leave home. 

James: Atos should 

lose their contract for 

both ESA and PIP. Their 

decisions are constantly 

overturned on appeal. 

Katherine: People 

who have disabilities 

should not be treated 

as they are at present. 

It is totally disgraceful. 

Jo: My mum has MS 

and nowhere near 

enough is done for 

people like her. They 

should be doing more 

not less. 

Photo: Rory Carnegie 


One society 

YOUR LETTERS 

Brave heart 

To the ‘cowardly lion’ (MS Matters 

109): worry not! As far as I know 

pacemakers are fitted under 

local anaesthetic. My dad was 

like a new person after having 

this procedure and hopefully you 

will notice the benefits almost 

immediately. You’ve obviously 

been through so many bad 

experiences and survived them 

that I feel you are far removed 

from being cowardly. It’s another 

challenge but you can do this! 

Good luck, and spit in the eye of 

this bloody rotten disease. 

—Tessa Prowse, by email 

It Asda be said 

I refer to Stephen Armstrong’s letter 

(MS Matters 108) concerning his 

unfortunate experience in an Asda 

store and to Hazel Claridge’s reply in 

109 urging a boycott of Asda. I have 

worked for Asda since 2003. I was 

diagnosed with relapsing remitting 

MS in 2005 and am still working. 

While it was diffi cult at times in the 

beginning, Asda has shone through 

in the end. They found me alternative 

(meaningful!) work and have supplied 

me with equipment to help me to do 

my job. I still feel that I am a valued 

colleague, even though I am now 

challenged with some aspects of the 

work. They gladly offer me additional 

support to enable me to perform my 

allotted tasks when I need it. 

In our store – which won the Scottish 

Business Diversity Awards in 2010, in 

part because of the support given to 

me – we have facilities such as toilets 

with disabled access. We also have 

electric scooters to loan as well as 

wheelchairs with trolley attachments 

that also fi t on customers’ own chairs. 

If a customer comes in and needs 

assistance, our customer service 

colleagues will fi nd someone to 

accompany them in the store and 

we even help customers take their 

shopping to their car. 

—Sue Turner, Ayrshire 

Wheelchair-users only? 

In the last issue of MS Matters, 

we published a letter from Arthur 

Goddard, who observed that ‘more 

and more users who display the 

Blue Badge get out of their car and 

walk off without a limp or walking 

stick!’ He called for disabled 

parking spaces to be reserved for 

‘wheelchair-users only’. 

Mr Goddard’s letter provoked a 

big response – we have received 

more letters by far on this topic 

than on any other in recent years. 

Thanks to everyone who wrote in. 

Here, we print a small selection of 

your letters; on page 40 we talk to 

Arthur Goddard himself. 

If a ‘wheelchair only’ notice is put on 

disabled parking bays then many 

people like me will have their little bit 

of independence taken away. I have 

to open a car door to its fullest extent 

The Ayrshire Asda has electric scooters to loan 

HOLIDAYS 

“My trip of 

a lifetime” 

Travelling with MS can 

lead to problems, but 

they’re worth tackling. 

Choochy writes: 

Like many people planning a 

break, I have been scribbling 

endless lists. Nothing 

unusual in that, except the 

holiday I have booked to New 

York is next year. 

MS throws up a minefield 

of problems. Extra health 

insurance, assistance at 

the airport, worries about 

fatigue. I spent hours at the 

travel agent, firing questions 

at a lovely lady who looked 

utterly exhausted by the 

time I left. My son’s only 

fear is that I will make him 

travel through Heathrow on 

one of those buggies. Not 

cool, apparently. 

Perhaps I should have 

taken the easy option and 

booked a holiday closer to 

home. But if MS has taught 

me anything, it’s that life is 

for living. I’ve overcome far 

worse challenges in the past 

two years. That reminds me, 

will my hair straighteners 

work with American voltage? 

Must add that to my list… 

ABOUT CHOOCHY 

Choochy was diagnosed with 

MS last year and writes a blog 

– www.stumblinginflats.com. 

You can also follow 

her on Twitter 

@MS_Stumbling 

FACEBOOK FEEDBACK tell us what 

you think on the MS Society Facebook pages: 

www.fb.com/MSSociety 


One society 

VIEWPOINT 

“Acceptance 

is the key” 

Stuart explains the motto 

he thinks sums up his life 

with MS. 

Stuart writes: My motto 

is: ‘Sometimes the things we 

can’t change end up changing 

us.’ I was diagnosed with MS 

when I was 15, and struggled 

for years to come to terms 

with my diagnosis. In 2011, my 

life started to change. I began 

running to keep active and 

to try to help my mood. This 

started to change me, physically 

and mentally. Since I started 

running I have completed 

a marathon and two halfmarathons, 

and raised nearly 

£15,000 for the MS Society. 

The day I ran the marathon 

was the biggest day of my 

life. The moment I crossed 

the line, I finally accepted my 

diagnosis. I realised I cannot 

change it, but I can change my 

actions and outlook. For me, 

acceptance is key in helping 

to overcome MS. Once I came 

to terms with the fact that I 

could not change my diagnosis, 

I changed my thinking, and 

ultimately changed my life. MS 

is no longer the end. 

ABOUT STUART 

Stuart was diagnosed with 

MS aged 15. He fi ghts against 

the disease by running to 

fundraise for the MS Society. 

Stuart blogs at www. 


Should disabled parking spaces be for wheelchair-users only? 

YOUR LETTERS 

to swing my legs out. I can then walk 

reasonably well for about 20-30 yards 

before my legs collapse under me. 

I sometimes suspect that people 

misuse disabled parking bays but 

jumping to conclusions about other 

peoples’ situations is dangerous. Their 

problems may not be obvious to us. 

—Judith Adkins, Hull 

I’m glad it is not just me who has 

noticed people using disabled 

parking bays who get out without 

walking aids or a limp. I have 

noticed it for a while; the worst 

place is outside the local hospital. 

—Ian Fellows, Staffordshire 

Arthur Goddard asks that disabled 

parking bays carry a sign stating 

‘wheelchair-users only’. That would 

be an outrage to people with MS 

who use two crutches. 

I often remonstrate with people 

abusing the bays and was incensed 

when one fi t man told me his need 

was greater than mine as his car was 

large and new. I have had a mother 

tell me that herhealthy children need 

a wider space to climb out and I’ve 

lost count of those who need the bay 

because they’ll ‘only be fi ve minutes’. 

They are unthinking people; but surely 

others with MS should know better? 

—Name and address supplied 

For more 

REAL LIFE 

stories turn 

to Page 24 

My wife has SPMS so we need 

a wheelchair bay for parking. 

We are astounded by what 

appears to be an epidemic of 

Blue Badge holders who are 

quite capable of walking from 

their vehicles unaided and often 

returning carrying shopping. 

Maybe an extra designation on 

certain bays to be solely for 

wheelchair-users with a matching 

designation on the Blue Badge 

would make life easier and 

be enforceable? 

—Ian Howells, England Council 

Member for Kent 

Perhaps Mr Goddard’s very valid 

proposal might be ‘watered down’ 

slightly and be applied to just a few 

disabled parking places. 

—Bill Tucker, Leeds 

Good gawd, I thought I was the 

only person who thought these 

bays should be for wheelchairusers 

only. Our local hospital 

has this system in use. There 

is one area that is set aside for 

wheelchair-users and the other 

for other disabled people. 

—J Rae, South Yorkshire 

Arthur Goddard’s letter must have 

been misdirected on its way to 

the Daily Mail. If I want uninformed 

strangers judging my MS with 


What heights could 

you reach for 

Challenge60? 

WORLD MS DAY 2013 

What’s your motto? 

World MS Day 2013, on 29 May, focused on six young people 

from around the world living with MS: Diogo, Breea, Khaoula, 

Anna, Praneel and Brenda. Each week they shared a new motto 

at mymotto.worldmsday.org. Here, Diogo, 23, from Portugal, 

and Breena, 19, from the USA, share their stories. 

“If we choose to be 

winners, we will 

be champions. If 

we choose to be 

losers, we will lose” 

Diogo says: 

The daily support from 

everybody close to 

me is fundamental to 

living with MS. I am 

grateful for my friends 

and family as we stick together. They 

are the first ones to tell me to look 

after myself. 

Having MS means that I have learnt 

that there are good and bad people 

in this world. I have met both and 

am learning how to deal with them. 

There will always be somebody who 

thinks I am pretending to be more ill 

than I really am. These people don’t 

want to understand what MS means, 

and I am strong enough to forget 

about them. 

It’s important to live life to the 

max with my friends. It’s a great 

that sometimes, when I’m having 

fun, for just one moment, I forget 

I have MS. 

“Stay positive, be 

strong and focus 

on your dreams” 

Breea says: 

I was 18 and a highschool 

senior when 

I was diagnosed 

with Tumefactive 

MS and I felt clumsy 

one morning and 

by 6pm that night I was in the 

emergency room. 

On the 12th day of being in hospital, 

my mum told me that I had MS. I was 

devastated and kept thinking, ‘Why 

has this happened to me?’ 

I now know that the best way to 

cope with MS is to stay positive, 

because being down and negative 

about it isn’t going to help. 

When I was first diagnosed, I was so 

unsure about myself. How would I live 

with MS? I wondered if anyone would 

want to be my friend, if my boyfriend 

would still love me or want me, if I 

could ever have kids, and more. Now 

I have built myself up to be more 

confident again, learnt as much as I 

can, and will not allow MS to stop me 

from being the best I can be. 

FURTHER INFORMATION As a 

member of the MS International Federation, the 

MS Society supported the World MS Day campaign. 

To read more information about the campaign visit 

mymotto.worldmsday.org/ 

FUNDRAISING 

Flying 

start for 

Challenge60 

Challenge60 has got off 

to an amazing start, raising 

over £100,000 in the first 30 

days. Supporters have come 

up with all sorts of ways to 

get involved, from dying their 

hair orange for 60 days to 

climbing mountains. 

Chellenge60 is a special 

initiative to mark our 

60th year, aiming to raise 

£250,000 in just 60 days for 

MS research. 

MS Nurse, Dawn Brookfield, 

is taking part in the Great 

North Swim in memory of 

two of her patients. 

‘Simon was an absolute joy 

and an inspiring chap. He 

was a high-flying lawyer and 

was diagnosed with MS in 

his early 50s, just after he got 

married,’ says Dawn. ‘He had 

rapidly progressing MS and is 

sadly missed. 

‘I lost another patient, 

Diane, early this year. She had 

an aggressive form of cancer, 

as well as MS. They have both 

left a big hole in my life.’ 

FEELING 

INSPIRED? 

It’s not too late to join the 

Challenge60 team. You 

can find lots of fundraising 

ideas and sign-up on the 

Challenge60 website: www. 

challenge60.org.uk. For 

more information call 

0845 481 1577 or email 

challenge60@mssociety. 

org.uk. 


One society 

MORE 

BLOGS 

Visit our regularly 

updated blogs section: 

www.mssociety.org. 

uk/about-us/ 

INTERNET 

“Online help 

is vital to me” 

Life with MS has been 

transformed by the web 

– but there is a caveat. 

Trevis writes: I met an 

old friend in Dublin for a pint 

this week. We talked about 

politics, our wives, his kids, 

the weather – and about our 

MS. Mike and I became friends 

because we both have MS, and 

think similarly about a lot of 

aspects of the disease. 

The thing is, it was our first 

meeting in person. The way 

we live our lives with MS has 

changed so much in the past 

decade or so, and a big part of 

that is because of the web. We 

find support and community 

online. We learn of new and 

promising treatments. We hear 

of outrageous cures-for-profit. 

While in-person support 

groups will always be valuable, 

time on the web – even with 

its snake-oil salesmen – is of 

huge value. The important 

part is sluicing the sediment 

away from the nuggets of 

gold. Wouldn’t it be grand to 

share where we find crucial 

information? I’m always looking 

for more and better sources of 

MS knowledge. How about you? 

ABOUT TREVIS 

Trevis lives in Seattle, USA. He 

has had MS since 2001. Follow 

Trevis via his ‘Life With 

MS’ Facebook page, 

@TrevisGleason 

and www.Trevis 

LGleason.com 

Arthur’s letter on parking provoked a huge response 

YOUR LETTERS 

nothing more than a casual glance, I’ll 

wait until ATOS summon me. 

—Tony King, Bristol 

The answer is not ‘wheelchair-users 

only’. There are no doubt plenty of 

MS sufferers like me, who hobble 

about slowly with a stick and find 

disabled spaces invaluable. The 

answer is surely for the use of 

these bays to be monitored by 

people who would check that they 

were not being misused. 

—Robin Bannister, Surrey 

I am dumbfounded by Arthur 

Goddard’s letter. No, wheelchairusers 

are not the only ones to need 

to use disabled parking bays! I have 

MS and use a crutch or stick; not an 

imaginary illness, but one requiring me 

to be nearer to the shops, as I cannot 

bend my legs well. I need the extra 

room so I do not damage my own or 

anyone else’s car. I am most certainly 

not using granddad’s Blue Badge! 

—Nicki Kelly, Cornwall 

Did Arthur suddenly become a 

wheelchair-user overnight? Or 

was he like thousands of other 

disabled people who ‘won’t give 

in’ and are determined to stay 

upright until the bitter end? 

I have secondary progressive 

with relapses and personally suffer 

a great deal of pain in my legs, 

both neuropathic and spastic. 

Also, numbness, foot-drop and 

fatigue, and that’s when I’m good. 

Some days, I can make it on my 

own two legs to fetch a trolley, 

which I then use as a walker 

around the store; some days, I will 

need my crutches. 

No matter how I am feeling at 

the beginning, when I return I will 

always feel worse and am always 

grateful that my car is close to the 

entrance. Maybe it would be OK 

with Arthur if we who are just still 

managing to walk had a parking 

space just outside store entrances, 

albeit narrower as we don’t need 

to get our wheelchairs out. 

Arthur could have a double-width 

space at the opposite side of the 

car park. I’m sure it’s less painful 

across there on wheels rather than 

one painful step at a time. 

— R Parrott, Grimsby 

At the supermarket, I park in disabled 

bays next to a trolley park so that I 

have a trolley for support to go into 

and out of the shop without having to 

walk far from my car. I have noticed 

that the trolleys are often taken away 

by staff, who park them either inside 

the shop or by the door. I have asked 

them to leave a few in the trolley 

parks next to the disabled spaces. 

Do other people fi nd this? 

— Penny Groom, by email 


One society 

ABOUT PETULA 

Petula is Head of 

Volunteering at the MS Society 

One of Rachel’s paintings, of Tenby in Wales 

MS Society staff show their gratitude 

VOLUNTEERING 

“A massive thank-you 

to all our volunteers” 

Petula Storey, Head of Volunteering, talks about 

the MS Society’s many volunteers and the huge 

impact they have on our work. 

It’s my job to ensure our 

volunteers have the support 

they need to carry out their 

role and to make sure their 

efforts are recognised. With 

that in mind – and because 

in June we celebrated 

Volunteer’s Week in an 

important year for the MS 

Society, our 60th birthday – 

I want to say thank you to all 

our volunteers. 

I’ve only been here for one 

of those 60 years, but in that 

time have seen, each day, 

how our volunteers work to 

improve the lives of those 

affected by MS. 

There’s Margaret in Hull, 

continuing the work started 

by her family, who set up 

the branch 58 years ago. 

And Ukba, who hopes to 

set up an Asian Support 

Group within her local 

branch in Burnley. Or Brian 

in Newport, who has helped 

rebuild his local branch. 

Gareth in Scotland has 

raised around £100,000 for 

the MS Society. And I was 

delighted to join the 40th 

anniversary celebrations of 

the Camden branch with Jane, 

Nicola, Belinda and Mary 

– they’ve been volunteers 

since the branch’s beginning. 

I’ve only mentioned a few 

of those I’ve met, but there 

are so many others who give 

support through the range 

of volunteer roles. All are 

crucial to our work. 

“Without your efforts we wouldn’t 

be able to do what we do” 

I know you have a 

choice when it comes to 

volunteering, so thank you 

for giving your time to the 

MS Society. Without your 

efforts we wouldn’t be able 

to do what we do. 

CREATIVITY 

“Painting helps my 

fight against MS” 

Rachel tells how her hobby of painting 

gives her a sense of freedom – as well 

as helping to raise vital funds for us. 

When I was diagnosed with MS back in 2007, 

there was a lot to take in. I had lots of questions 

– is my life ever going to be the same, are people 

going to treat me differently, what about work? 

Once I had begun to accept I had MS, 

I promised that I would not let MS change me. 

However, in 2010, I was made redundant. I trained 

as a graphic designer and thoroughly enjoyed my 

career – this redundancy was real a shock. Since 

then, I’ve been working on temporary contracts. 

I’m still the person I’ve always been – creative, 

intelligent, and I love a good laugh! I won’t let that 

be taken from me. While looking for another job, 

I decided to take up painting. I’ve always enjoyed 

it, but until now I’ve struggled to find the time. 

Painting gives me a sense of achievement and 

allows me to use my talents. When I’m painting, 

I’m transported to another place, where MS is 

not allowed to run my life. It would be a dream 

come true to become a full-time artist. 

But I don’t want to paint just for my own good. 

The MS Society recently asked me to design a 

thank-you card to send out to supporters during 

Volunteers’ Week. I’m really thankful to those 

people who fundraise, donate and volunteer to 

support people like me. 

ABOUT RACHEL 

Graphic designer Rachel was 

diagnosed with MS in 2007. To 

see more of her paintings or 

enquire about buying one, email 

rachlane@btinternet.com 


About Indigo 

Former traveller Indigo 

Hawk has worked as a 

carer, a gardener, a driver 

and a model. He has 

lived in a motor-home 

and a lorry, and now 

lives in a bungalow in 

Down St Mary, Devon. 

Indigo was diagnosed 

with MS in 2009. 


Real life 

Traveller’s 

Tales 

Indigo Hawk has lived an adventurous life. 

Now he’s settled for the peace and quiet of 

rural Devon. Anita Roberts kicks back and 

takes in the view. 

Photos: James Walker 

My mum became 

disabled by polio 

when she was a 

child, so my sister 

and I grew up being carers, 

and then I became a carer. 

My first care job, at 17, was 

at Brambles MS Care Centre, 

which is a coincidence. I 

enjoyed making somebody’s life 

more enjoyable. Since then, I’ve 

had lots of care jobs. 

I was born in Reigate. My 

father still lives in Surrey; my 

mother died in 2005, aged 52. 

I have a daughter, 18, and a 

son, 16, but they don’t live with 

me. My sister, who’s three years 

older than me, lives in Scotland 

with her partner and two girls. 

She has MS, too. 

I think I’ve had MS for 27 

years, but it wasn’t diagnosed 

until 2009, when I had an 

MRI scan and they told me 

I had secondary progressive 

MS. Looking back over my 

medical records, it seems as 

though I had my first symptom 

– diplopia, or double vision – 

when I was 17. 

I’ve moved around since my 

late 20s. I’ve lived in Hereford, 

Dorset, the Isle of Wight, Sussex 

and Edinburgh. I’ve worked as 

a gardener, and as a driver, and 

I’ve done a bit of modelling. 

I’m quite enthusiastic and 

energetic. I spent six months in 

London, but it was too busy. I 

like to be near the country, so 

I bought an old motor-home, 

went to Devon, and never 

looked back. I lived in the 

motor-home for two-and-a-half 

years, but when my mother 

passed away I got some money, 

bought a lorry and paid a friend 

to convert it. I was unsettled 

for about six months but then 

I found a permanent place on 

the grass in a lay-by. 

It was a wonderful life. There 

was nobody around. I lived 

by a main road, with cars and 

lorries going past at all times 

of night. It was quite dark and 

I was surrounded by oak 


“I wanted to 

cut out all the 

rubbish in my 

life and live 

in peace” 

Indigo Hawk: “Every day, I am stunned by the beauty” 

trees, owls and birds, and I even 

heard that it was once a hangman’s 

corner. But I enjoyed being close 

to nature, hearing raindrops on 

the roof. 

There were no lights in the lorry, 

so in winter I would light 

candles at 4am and wait for 

daylight to come. I’d put the burner 

on, otherwise it was like living in 

a fridge. 

I cleared the land in the lay-by. 

I used to saw wood by hand, but I 

dislocated my shoulder so I bought 

a chainsaw. The farmer nearby let 

me have access to spring water. 

Living there was magical, and I felt 

free. I’m into harmony and peace; 

I want to switch off the noise and 

clutter in my head, and breathe. 

I’d been there a year when a 

friend, Jim, moved in. He was 

in his 60s and his tent had been 

burned down at Glastonbury, so he 

was in despair. 

I lived in the lorry for five years. 

It was an amazing chapter in my 

life, but for years, I had felt this 

numbness. My hand was dead 

and my body felt three-quarters 

numb. Physically, life became hard. 

“I enjoyed being close 

to nature, hearing 

raindrops on the roof” 

I couldn’t lie down. I was sleeping 

at an angle because I felt a lot of 

pressure on my hips and calves. 

It was difficult to access services 

because I wasn’t living in a house, 

so an address and postcode were 

created. I think the postman just 

gave it to me and Jim: 1 Greenford. 

The lorry was a green Ford. 

Living with MS 

I went to the doctor and at first 

he thought it was carpal tunnel 

syndrome, maybe something to 

do with the chainsaw, but it spread 

through my arm and neck. I had an 

MRI and the doctor said, ‘It looks 

like MS,’ and I said, ‘Well I’ve had 

Multiple Stupidity since I was born,’ 

and we laughed. After that, I wanted 

to cut out all the rubbish in my life 

and live in peace. 

I had broken ribs and it turned 

out that I had broken bones in my 

feet five times, although I didn’t feel 

it. I have a high pain threshold, so 

MS does have some benefits. I had a 

tattoo up to my right shoulders, neck 

and ear. It took 13 hours but I felt no 

pain; I found it quite pleasurable. I 

have 12 tattoos so maybe it is only 

intense sensations that I can feel. 

Eventually, I moved to Totnes, 

Devon, and the council found me a 

place in sheltered accommodation, 

but it was noisy and there were too 

many people, so I did a home-swap 

and now I live in a bungalow in 

Down St Mary. I have a panoramic 

view of the sunset and a row of 

thatched cottages. Right now, 

I’m sitting in the garden under a 

huge copper beech. I love the sun 

and vitamin D. Every day, I am 

stunned by the beauty. I have a 

lovely neighbour who is also a bit 

of a carer. I’ve got running, hot 

water and a flushing toilet. I feel 

very grateful. 

I went back to the lay-by yesterday. 

The lorry is in the same place and 

there is a community there now. 

We’ve never been threatened 

with eviction. We are just people 

living different lifestyles, all in 

this jumble of life together. 


About Ayan 

Ayan Jamac, 31, was 

born in Somalia and 

came to the UK as a 

child. She now lives 

in Yorkshire with her 

husband Mohamad and 

three daughters, aged 

10, six and two. She is 

currently pregnant with 

her fourth child. Ayan 

was diagnosed with MS 

in February 2012. 

“ 

I’ve never 

met another 

Somali with MS 

“ 

MS is little known in equatorial countries and Ayan Jamac has yet to 

meet another Somali with the condition. But, she tells Hilary Freeman, 

with the help of the MS Society she hopes this will change. 

I 

was only eight years old when 

my family came to the UK from 

Somalia to escape from the 

imminent civil war. I was born 

in a place called Hargeisa, which is 

now the capital of Somaliland. I don’t 

remember much about it except 

playing outside in the sunshine. 

I haven’t been back to visit since – 

although, ironically, my consultant 

told me I should go there to get some 

much-needed vitamin D! 

I’ve heard terrible tales about the 

war, and we lost one cousin, who 

was shot, but my immediate family 

was fortunate not to experience 

anything horrific. My dad was 

already working here as a merchant 

seaman, and most of my family 

were already in Europe, so coming 

here was just a family reunion for 

us. Everyone in Somalia speaks 

some English, and I’d had lessons 

at school. Once I was enrolled in my 

very multicultural primary school 

in east London, it didn’t take me 

long to become fluent in English 

and to integrate. I was a very healthy 

and fit child and I enjoyed playing 

basketball and netball. 

Getting a diagnosis 

For about a decade, I had episodes 

of tingling and numbness, but it 

always went away before I could 

worry enough to tell a doctor. In 

January 2011, my husband got a 

job in Yorkshire and we moved up 

north, leaving the rest of my family 

in the south-east. One day that 

September, my right leg suddenly 

gave way completely. I couldn’t feel 

a thing from my hip to my toes. I 

went straight to my GP, who first 

thought I’d injured myself lifting 

something too heavy. I knew there 

was something really wrong. It 

was terrible timing – I had a oneyear-old 

child, was just starting 

to make friends and get to know 

the area. It was so hard to manage 


Real life 

the children and 

I had no family 

support. I had to use 

crutches to walk. 

I pushed for a 

diagnosis because 

I needed a name for what 

was wrong and I felt I had 

to be healthy for my girls. I was 

referred for physiotherapy and to a 

neurologist. Finally, six months later, 

in February 2012, after an MRI and 

lumbar puncture, which were really 

scary and horrible, I got a diagnosis 

of MS. 

I knew nothing about it except 

what I’d seen on TV – people in 

wheelchairs or those who couldn’t 

swallow – and that it was incurable. 

In fact, when my neurologist gave 

me the diagnosis I said, ‘I can’t have 

MS, because only old people get it.’ 

He soon set me straight. 

In Somalia, it’s almost unheard of 

to get MS. It’s right on the equator, 

with the sun shining 365 days a 

year – scorching hot. I’ve never met 

another Somali with the condition, 

and there are no statistics, although 

anecdotally I have heard of two 

other people. That makes it very 

difficult to explain. I can only say, 

‘I have a nerve problem.’ I chose 

only to tell a few close relatives 

and my best friend. They were 

all really shocked. In the Somali 

“As soon as I was in 

the sun, my whole 

body changed. I felt 

better physically 

and emotionally” 

GET IN 

TOUCH 

If you have an African 

background, have MS and 

would like to get in touch 

with Ayan, contact Sonal 

Patel, Information Officer 

(Diversity): spatel@ 

mssociety.org.uk or 

020 8438 0820. 

community, people 

tend to patronise 

you when you’re sick 

or disabled. 

It’s made me feel 

very isolated and, for a 

while after my diagnosis, 

I became very depressed and 

lost all my confidence. I couldn’t 

even go outside and I missed a 

cousin’s wedding. I felt embarrassed 

about dragging my leg. My biggest 

fear was being in a wheelchair and 

not being able to take the kids out. 

I was grieving. My faith helped a 

lot and my husband has been a 

wonderful support. His background 

as a microbiologist is very useful. 

We’re hoping to move back to the 

south-east so we’ll be nearer family 

support. I need people around me 

who understand and who are happy 

to help with the school run if I’m not 

well enough to do it. 

Health and strength 

Although I know there’s no cure for 

MS, I’ve decided to be as healthy as 

possible. I read everything I can on 

the internet. I bought an exercise 

bike to make my muscles stronger, 

and a balance board like my physio 

used, plus ankle weights. I’ve found 

that a Tens machine (see below) 

really helps, too. I was on beta 

interferon for a few months but it 

made me so ill that I had to stop. 

I’ve also started eating better, 

with lots of vegetables and oily fish, 

and I take vitamin D supplements. 

I’m Muslim, but I don’t wear a hijab 

anymore, I just cover my head. 

Covering my whole body isn’t good 

for my health – I definitely think 

I need the sunshine. Last summer, 

we went to Italy on holiday for two 

weeks. As soon as I was in the sun, 

my whole body changed. I felt better 

physically and emotionally. 

I’m probably 50 per cent back to 

normal now, but I still can’t walk 

long distances. My bladder is a 

problem and I’m constantly running 

to the loo. Sometimes, I’m so 

fatigued that I have to go to bed at 

the same time as the girls, 8pm. 

It’s so frustrating not to know 

anyone else in my situation. It 

would be nice to speak to someone 

going through the same things, 

with the same or similar cultural 

background, but I don’t know how 

to find them. When I was first 

diagnosed and I was in denial, I 

think I told myself that because I 

couldn’t find any other Somalis 

with MS, I couldn’t really have it. 

Now, I want to find others so that 

we can relate to each other and help 

each other. 

The names of our interviewee and 

her husband have been changed 

at their request. 

MS support in 

different languages 

We produce information on MS 

in Somali and other languages. 

Visit www.mssociety.org.uk/ 

translations or call 020 8438 

0799. The MS Helpline can 

provide support to people in the 

UK whose first language is not 

English. The interpreting service 

covers over 170 languages. Call 

0808 800 8000 (Mon to Fri, 9am 

to 9pm, except bank holidays) 

and request an interpreter. 

How TENS devices can help Transcutaneous electrical 

nerve stimulation (Tens) devices use patches placed on the skin to pass an 

electrical current through to specific nerves. Tens can help in the management 

of pain in the short term, but does not get rid of pain in the long term. Ask your 

GP or MS nurse for more information. 


Real life 

“ 

Many men would 

find it difficult 

doing this role. I don’t 

“ 

When Ceinwen Izzard was diagnosed with MS, she and her husband, 

Richard, put their high-fl ying civil service careers behind them. Andrea 

Lisher talks to the couple about the adjustments they have had to make. 

Richard Izzard is describing 

how he first encountered his 

wife, Ceinwen, while they 

were both working at the 

Foreign and Commonwealth Office 

(FCO). ‘We met across a conference 

room,’ he says. ‘We were working 

on a case about a disappearance 

in Angola. I was trying to find the 

person and Ceinwen was liaising 

with the family. I can remember 

seeing Ceinwen for the first time. 

She’s quite forthright in her views, 

so she was fascinating. But how did 

you describe me?’ Ceinwen laughs 

as she replies, ‘I thought you were a 

dour little man!’ 

That meeting happened in 1999 

and in 2004 the couple, who live in 

Milton Keynes, got married. Just five 

years later, Ceinwen, now 56, was 

diagnosed with primary progressive 

MS. She’d had numbness in her 

hands for some time and her physio 

sent her for an MRI. 

Only a few months after Ceinwen’s 

diagnosis, Richard, 44, left the 

FCO to become his wife’s carer. He 

already had an idea of what it was to 

be a carer; his mother looks after his 

father, who’s had four strokes. He’d 

worked in places such as Beijing, 

Ghana, Karachi and Qatar and 

admits he sometimes misses it: ‘You 

do get pangs.’ 

A change of pace 

Richard now works part-time as an 

exam invigilator and fits the shifts 

around his caring role; Ceinwen 

works part-time in a shop. Richard 

says, ‘My job now allows Ceinwen 

to go out and do what work she can, 

while she can. She doesn’t have to 

worry about the house – I do that. 

She can do her part-time work, put 

everything into it, come back and 

eat dinner. A lot of men would find 

it difficult doing this kind of role. I 

don’t. I found it very easy to adapt.’ 

Richard gets Ceinwen dressed 

in the morning, makes the meals 

and does other housework. He 

stopped Ceinwen ironing when 

she burnt her stomach, and banned 

her from using knives when she cut 

her hand. 

The change to the couple both 

working part-time has had an 

impact on their finances. Their 

income has halved and they 

currently rely on Ceinwen’s pension 

and insurance policies. Ceinwen 

says she’s not sure how much longer 

that can go on for. 

‘Our lump sums have kept us 

going,’ she says. ‘I’m sure people 

would look at us and say we’re 

comfortable. But we didn’t really 

have to think about money when 

we were both working. Now I never 

stop. I’m always worrying about 

spending too much. When we 

run out of insurance policies and 

savings, the house will have to go.’ 

Richard admits the idea fills him 

with dread and he would consider 

going back to work full-time but 

worries about his chances of finding 

a job. He’s also concerned about 

Ceinwen’s MS worsening. 

Being a carer can have a 

big emotional impact. A recent 

survey carried out for Carers 

Week found that 61 per cent 

Photos: Alex Grace 

Richard cycles to raise money for the MS Society 


About Richard 

and Ceinwen 

Richard and Ceinwen 

Izzard met 14 years 

ago when working 

at the Foreign and 

Commonwealth Office. 

Richard became 

Ceinwen’s full-time carer 

in 2009, shortly after 

she was diagnosed with 

primary progressive MS.

Oritsé was a carer for his mum, who has MS 

of carers have experienced 

depression and 92 per cent 

feel more stressed because of 

their caring role. Richard says 

he’s struggled with isolation: 

‘If I’m not invigilating I look 

forward to going back and 

seeing people. Not going out 

can make me miserable and 

bad tempered.’ 

Richard says realising he 

was a carer was a gradual 

process. At times, he says, 

it can be frustrating, as 

Ceinwen won’t admit she 

can’t do things anymore. 

But he admits there is a risk 

of becoming overbearing: 

‘You mustn’t smother 

the person. You tend to 

overreact, certainly, when 

you first start caring. You 

try to do everything for the 

other person.’ 

It’s not just being a carer 

that can be tough, Ceinwen 

describes herself as ‘one of 

those women who likes to 

be in control of everything’. 

She says she’s struggled 

with letting Richard do 

things for her: ‘He will 

automatically do stuff even 

if I’m around and doing 

fine. I start to feel unsure of 

what my role is. That’s why 

it helps for me to have work 

to go to. It gets me out of 

the house, we get money to 

spend on nice things and I 

feel worthwhile.’ 

SUPPORT 

FOR CARERS 

The Carers UK 

advice line is on 

0808 808 777. 

Their website is at 

www.carersuk.org 

Richard 

says cycling 

has really 

helped 

him. He 

started 

seriously 

when he first 

gave up work 

and did the Etape 

de Tour to raise money for 

the MS Society. Since then, 

he’s used it to relieve stress: 

‘Cycling started out as a way 

to raise money for MS but 

it’s turned into a stabiliser. 

I get support from my cycling 

buddies at the club. They’ll 

give me the thumbs up or 

someone will ride up and 

say, “How’s it going, how’s 

your wife?”’ 

Talking about the future is 

something the couple tend 

to avoid doing too much. 

According to Ceinwen: 

‘We just get on with what’s 

happening at the moment. 

I do think we’re very lucky 

with slow progression. We’re 

lucky that it’s my hands that 

are affected rather than my 

legs so I haven’t got a problem 

with mobility. 

‘I’ve stopped looking at 

all the worse-case scenarios 

and just think about how I 

am now and what I can still 

do – which is pretty much 

everything, with help 

from Richard.’ 

A young male carer’s 

perspective 

ORITSÉ WILLIAMS is a founder 

member of and singer with the boyband 

JLS, who recently announced they will split 

up after a farewell tour. His mother has MS 

and, growing up, he helped look after her, as 

well as his younger brothers and sister. Here, 

Oritsé answers questions from young carers 

for people with MS. 

How did you feel when your mum 

was diagnosed? 

I was 12 and I felt upset, shocked and alone. 

I really wanted somewhere to go to talk through 

what I was feeling. Now there is more help – 

for example Carers UK. If you need someone, 

I encourage you to reach out to them. 

How did you combine 

school and caring? 

In the morning I would drop my sister at 

school, then when we got home I’d cook 

dinner for the family. It was diffi cult to cope 

with getting an education plus being a 

young carer. 

How do you deal with 

worries about your mum? 

Try to smile every day. You can still enjoy the 

things everyone else can. Patience comes into 

play – you have to understand that sometimes 

your mum can’t do things as fast as other 

people, but as long as you’re going to get 

there, that’s the important thing. 

To see a video of the interview with 

Oritsé, go to http://bit.ly/oritse MS 

What the MS Society is doing 

We are campaigning for better support for carers, as 

well as funding research into their needs. In an MS 

Society-funded study, Professor Julia Addington- 

Hall investigated the needs of men caring for people 

severely affected by MS. The two-year project at the 

University of Southampton saw her team interview 

male carers to understand their needs, and this 

work has informed a booklet for male carers: 

MS in the family: the man’s guide to caring 

for someone with MS, available at http://bit.ly/ 

msmalecarer. We also have a partnership with the 

Carers Trust, to help people find support near them: 

www.carers.org or call 0844 800 4361. If you care 

for someone with MS and want to talk to someone in 

confidence, our MS Helpline is there for you. Call 

0808 800 8000 or email helpline@mssociety.org.uk. 


Real life 

“ 

We need to 

keep telling 

people what MS is 

Zumba enthusiast Marie Sorroll has found an innovative way of raising 

funds for the MS Society – sponsored Zumbathons. Sarah Westlake 

discovers how Marie’s family connections to MS have motivated her. 

“ 

Fundraiser Marie is a very kind, 

gentle, yet driven woman. 

She’s hesitant and shy but 

also focused and determined. 

This world needs more people like 

Marie. We should clone her and put a 

couple of her into each community. 

Five years ago, Marie’s sister Carol 

died from complications arising from 

MS; she was living in Scotland at the 

time. ‘Carol was affected badly from 

the start and was housebound for 10 

years,’ says Marie. ‘She wasn’t attached 

to any sort of social group and I wish 

she had been – she was very isolated.’ 

Seeing Carol’s experiences first-hand 

inspired Marie to start fundraising. ‘I 

want to make sure people like my sister 

are given a voice and the option to get 

out and about,’ says Marie. ‘I’d also like 

to see more spent on respite care and 

holidays. It would have been great if 

my sister could have met people in a 

similar situation. Plus, more should 

be spent on providing information.’ 

On regular fundraising expeditions 

to her local high street, Marie is a onewoman 

information hub: ‘I explain 

MS to people all the time. I say it’s a 

condition of the nervous system; it 

attacks your nerves and muscles and 

can cause depression. We need to 

keep telling people what MS is.’ 

Inspired to help 

‘I’ve been exercising to music for years 

and, when my sister died, I wanted to 

do something. A close friend who has 

MS had been very active in my local 

branch. My friend, as well as my sister, 

really inspired me to help the Society.’ 

Marie’s Zumbathons are labours of 

love: ‘They take a lot of preparation.’ 

To help boost the funds raised, Marie 

works with local businesses, such 

as Phoenix insurance group. Last 

year, one Phoenix employee raised 

£1,600 in sponsorship money and the 

company matched £500 of it. 

In the run-up to a Zumbathon, Marie 

spends her time getting people to sign 

up, get sponsored, sell raffle tickets and 

encourages local businesses to donate 

prizes. Marie’s persistence nets her 

a diverse haul: vouchers, dinners in 

restaurants, Easter eggs and more. 

She spends days handing out 

leaflets, telling people about MS and 

her Zumbathons – getting people 

involved in any way. ‘I’m always 

looking for ideas and campaigning 

for the Society,’ says Marie. 

Marie pays for everything herself, 

including printing, administration 

and postage. ‘I don’t use donations 

for any of that. It’s important that 

every penny goes to the Society. 

This is important to Marie, but the 

MS Society doesn’t expect anyone 

to pay for administration of their 

event out of their own pocket. It’s 

common practice for people to 

use funds raised for reasonable 

admin costs.‘I was keen to raise 

money and awareness for the MS 

Society as I believe that it is often 

overlooked in favour of other, 

better-advertised charities. My 

family suffered a lot when my sister 

died and so I hoped that I could 

help stop others from experiencing 

similar devastation.’ 

Marie’s creative approach to events 

helps to build community, as well as 

boosting funds for the MS Society. 

Without people like Marie, we 

couldn’t do what we do. 

If, like Marie, you are inspired to 

fundraise, get in touch with our 

fundraising team. We’d love to hear 

from you and will support you any way 

we can. Email fundraising@mssociety. 

org.uk or call 0845 481 1577. 

Photos: Alex Grace 

30 MS Matters July / August 2013 

Marie’s Zumbathons are labours of love

About Marie 

In March this year, MS 

Society fundraiser Marie 

Sorroll, from Birmingham, 

put on her third 

sponsored Zumbathon, 

raising £6k and bringing 

her total to £16k. Marie 

has been doing Zumba 

– a fitness programme 

combining dance and 

aerobics – for several 

years. A Zumbathon 

is a non-stop Zumba 

party, lasting two hours 

or more. 

marie’s 

fundraising 

tips 

1Keep it simple. 

When it comes 

to fundraising, 

the simplest ideas 

always work best. For 

examples, visit www. 


fundraising 

2Get online. 

By setting up 

a fundraising 

page online, you can 

easily share your 

stories, pictures and 

update people on 

your successes. 

3Don’t be shy! 

You’re doing a 

wonderful thing 

by fundraising and you 

should be proud of 

yourself. So don’t be 

afraid to shout it from 

the rooftops and ask 

as many people to get 

involved as you can.

About Anthony 

Anthony Stone, 50, is 

a civil servant and lives in 

London with his wife and 

two children. He has had 

secondary progressive 

MS for 10 years. 

Taking the lead 

Assistance dogs can transform the lives of people with disabilities. 

In the first of a new series, Anthony Stone charts his progress towards 

becoming the custodian of one of these remarkable animals. 

Until six months ago, I had 

never heard of Canine 

Partners. Then my local MS 

branch invited the charity to 

give a talk about their work and I went 

along to find out more. I have hardly 

stopped thinking about them since. 

When I learned what these 

remarkable dogs are capable of, 

I could scarcely believe it. Outside 

of a Hollywood film, who had ever 

heard of a dog unloading a washing 

machine? Or helping to get you 

undressed, answer the phone, 

retrieve your bank card from the 

hole in the wall or make your bed? 

But that only begins to scratch 

the surface of what these dogs can 

do and the transforming effect they 

have on the lives of people with 

disabilities. The presentation finished 

with a video showing a man in a 

wheelchair exercising and playing 

with his canine partner. They both 

looked very happy. It got me thinking. 

I recognise that I am at a crossroads 

in my MS journey. I have had 

secondary progressive for about 10 

years and I am a full-time wheelchair 

user with limited dexterity. Although I 

still work full-time, I realise that can’t 

continue indefinitely. Everything is 

becoming more of a chore. The effort 

to get washed, dressed and into the 

car; the hassle to get out of the car 

and into my wheelchair and through 

the doors and into the lifts at the 

other end; work, lunch and then back 

home again. It’s the small things that 

I find the most frustrating; like when 

I drop my keys or leave something 

in another room, and have to go 

back. It’s beyond exhausting. The 

temptation is to slightly retreat from 

life, to stop going forward and start 

giving up, little by little. 

Psychological benefits 

I could see the obvious advantages 

of a canine partner helping me 

with physical aspects of my daily 

life. But it was the physiological, 

psychological and social benefits that 

most appealed. This was the potential 

game changer – bringing increased 

chances of social interaction and an 

all-round boost to well-being. 

I took the leaflet away, and when 

I got home, floated the idea with my 

wife. She was enthusiastic, especially 

when she discovered how canine 

partners are trained in a variety of 

emergency responses. They can 

activate an alarm, retrieve a mobile 

phone and fetch help if required. 

She was reassured by the security 

and support the canine partner 

would give when I was in the house 

on my own or out and about in my 

power chair. 


Real life 

“Anyone with a 

disability that causes 

difficulty with walking 

and limits the use 

of hands and arms 

could be eligible” 

A Canine 

Partners trainer 

demonstrates what 

the dogs can do 

at MS Life 2012 

in Manchester 

Since I became a full-time 

wheelchair user, I don’t have as 

many falls, but it still happens and 

I find it difficult to get back up. On a 

bad day, I can’t crawl to the phone. 

I just have to wait for help. 

Mulling it over 

We talked about it some more, and 

mentioned the possibility to our two 

children. We tried to understand 

how it would affect all our lives, and 

worked through various scenarios. 

I have been thinking about going 

part-time for a few years now, maybe 

working from home more. I want to 

strike a better work-life balance. 

I mentioned canine partners 

to my boss in the office. She was 

supportive, too. At home, we 

continued to talk it through. It is a 

major step, like introducing another 

member of the family. Although 

everyone was supportive, this would 

be my dog; it’s not a pet, but a 

working dog. I would be responsible 

for its feeding, grooming, exercise 

and play. I would have to be prepared 

to exercise the dog in all weathers. I 

would be the dog’s custodian; Canine 

Partners remain its owners. 

Having talked about it some more, 

I decided to apply. Anyone with 

a disability that causes difficulty 

with walking and limits the use of 

hands and arms could be eligible. 

I filled out the forms, which included 

writing short narratives of how I 

thought the assistance dog would 

benefit me, and a little about my 

daily routines. I gave permission 

for the charity to request medical 

reports from my doctors to ask about 

my suitability. 

Starting the application 

The process is not quick. It takes 

about two years from the time of 

applying to be placed with a dog. 

There is a huge demand. The Canine 

Partners dogs are usually Labradors, 

golden retrievers or crosses of 

those breeds. They also train some 

poodle crosses. The characteristics 

they are looking for are a gentle 

and co-operative nature, curiosity, 

a strong desire to be with people 

and a steady temperament. Once 

selected for training, the puppies go 

through socialisation with volunteer 

foster families who care for them 

and take part in training classes 

for 12 months. That’s followed with 

advanced training at the Canine 

Partners training centre. Once a dog 

has been matched with a potential 

partner, there’s a further two-week 

on-site training course which is 

tailor-made to suit the individual’s 

requirements. Follow-up after-care 

and supervision continues for the 

lifetime of the partnership. 

Not everyone who applies for a dog 

is successful. There are many factors 

to be considered and the dog’s wellbeing 

is a priority. So, four months 

later, when a letter arrived inviting 

me to an assessment day in Sussex, 

I could barely contain my excitement. 

It meant I had made it through to the 

next stage of the process. 

It would be a big day because 

I would be assessed on how I can 

manage a canine partner; motivating, 

rewarding and communicating with 

the dog. I am counting down the 

days, I just can’t wait. 

CANINE PARTNERS This registered charity assists people 

with disabilities to enjoy greater independence and a better quality of life, 

by providing specially trained assistance dogs. For further information 

visit www.caninepartners.org.uk or call 08456 580 480. 

Golden 

retrievers 

make excellent 

Canine Partners

insight 

Practical, real-life 

information about coping with MS 

Managing 

your 

MS 

Diet and 

nutrition 

What and how you eat can 

help to manage some of the 

symptoms of MS. 

There are all kinds of 

diets in almost every paper 

or magazine you read 

these days, telling us we 

can lose weight, be healthier, 

get fitter. It’s hard to know 

what to believe, and the fads 

seem to change all the time. In 

general, we all know that eating 

healthily is good for us, and 

could have the same benefits 

it does for people who do not 

have a long-term condition. 

Changing how and what you 

eat may help you manage 

some of your MS symptoms, 

and could improve your quality 

of life. At the moment, there is 

no strong evidence to suggest 

that following any one diet will 

cure MS. 

Many of the ‘MS diets’ are 

unlikely to be harmful. But 

if you do decide to try out a 

new diet, it is always worth 

checking it out with your 

neurologist, doctor or MS 

nurse, particularly if it involves 

significant changes to your 

eating habits. 

Can dietary 

supplements help? 

Some people make claims for 

the benefits of vitamins or other 

supplements. For instance, 

there is evidence that vitamin 

D deficiency is linked with a 

risk of developing MS, but 

there’s no evidence that taking 

supplements can help manage it. 

It is worth noting that many 

people in the UK are vitamin 

D-deficient; older people, in 

particular, are often advised to 

take vitamin D supplements. 

One of the reasons for this is 

that vitamin D helps protect 

against osteoporosis – thinning 

of the bones – which tends to 

affect older people and also 

people with mobility problems. 

Some diets recommend taking 

a much higher dose of vitamin 

D than the maximum daily 

dose recommended by the 

government (25 micrograms 

or 1,000IU ). Excessive intake 

of vitamin D can cause kidney 

damage and may actually 

weaken bones. So take advice 

from your doctor or MS nurse if 

you are planning to take vitamin 

D or other dietary supplements. 

Remember, too, that you can 

increase your vitamin D levels 

through exposure to sunlight and 

by regularly including in your diet 

the main food sources of vitamin 

D – namely oily fish (such as 

salmon and mackerel) and eggs. 

So how can food help 

manage my symptoms? 

What and how you eat can 

play a role in managing fatigue, 

tremor, swallowing difficulties, 

bowel and bladder problems. 

You can find detailed information 

in various MS Society resources 

in print and online. Here are 

some of the main points: 

Fatigue: If you get tired quickly, 

you might find it easier to eat 

small, frequent meals and snacks 

rather than large, hot meals. Try 

not to rely on sugary foods to 

keep your energy up – although 

these can have an initial pick-meup 

effect, this is often followed 

by an energy low. Starchy 

Illustrator: Adam Gale 


Insight 

Free 

guides 

Diet and nutrition 

(MS Essentials 11) 

and Swallowing 

difficulties (MS 

Essentials 24) are 

free publications 

from the MS 

Society. Download 

from www. 


or call 020 8438 

0799 for copies. 

carbohydrates, such as 

potatoes, bread and pasta 

(particularly wholemeal), can 

give you a slow release of 

energy that can keep you 

going for longer. Try to make 

sure you eat regularly and 

include a snack if you have 

a long gap between meals. 

Dehydration can lead to 

tiredness, so try to keep your 

fluid intake up. It doesn’t 

have to be water – tea, fruit 

juice and coffee can all help 

hydrate you. If you’re very 

tired, it can be tempting to 

drink lots of caffeine. But 

these drinks usually have a 

temporary effect, and may 

leave you more tired. 

Bladder problems: You 

might be tempted to drink 

less so you don’t need to 

go to the toilet as often. But 

this can make urine more 

concentrated, which can 

irritate your bladder and may 

make you more likely to get 

a urinary infection. It helps to 

keep up your fluid intake. If 

you can, aim for about 1.5 to 

2 litres (or six to eight cups) 

of fluid a day. Too much 

alcohol can make you go to 

the toilet more often. 

If you need to get used 

to drinking more, it’s best 

to increase your fluid intake 

gradually – on days when 

it is easy to get to a toilet, 

for example. 

Tremor: Tremor can affect 

your nutritional needs and/ 

or your approach to eating. 

Continual tremor uses up 

calories, which might mean 

that you lose weight. It can 

also add to fatigue. 

Adding high-energy 

supplements to your diet can 

help. Speak to your GP or 

MS nurse for detailed advice; 

they can also refer you to a 

dietician if necessary. 

If your tremor makes it 

difficult to hold or reach 

for things, certain foods 

may be easier to eat than 

others. You may find that 

finger foods, or home-made 

sandwiches are easier to 

manage than stews and 

soups. They are just as 

nourishing and can also 

be high in calories if you 

use mayonnaise in the 

filling. You can also get 

specially designed cutlery, 

crockery and kitchen 

utensils that can make 

preparing and eating food 

more manageable. 

Swallowing difficulties: 

Small, frequent meals and 

milky drinks may be easier 

to eat than large meals, 

and can help to make 

sure you’re still getting 

enough calories. If chewing 

is difficult, soften food 

beforehand with a fork or 

blender, and watch out 

for tough or stringy food. 

Thickening agents in drinks 

can help prevent liquids 

from going down the wrong 

way. You can get these 

on prescription from your 

doctor, along with prethickened 

fruit juices. 

Bowel problems: 

If you’re experiencing 

constipation, good fluid 

intake can help, as can 

plenty of fibre. Fibre cannot 

be digested and passes 

straight through the gut, 

helping digestion of other 

foods and removal of waste. 

A well-balanced diet, with 

plenty of fruit and vegetables, 

can provide this fibre. Good 

sources include prunes, 

figs, wholemeal bread, fibrefortified 

white bread, brown 

rice, porridge and wholegrain 

breakfast cereals. 

If incontinence is 

a problem, it’s worth 

experimenting to see if there 

are foods that make it worse, 

or make your stools firmer. 

High-fibre foods, caffeine, 

milk products, chocolate, 

artificial sweeteners, alcohol 

and spicy food can produce 

loose stools. Keeping a food 

diary for a few days may 

help you to identify which 

foods help or make it worse. 


Insight 

KIT 

TEST 

Tested by 

real people 

with MS 

ASSISTIVE TECH 

Anne Callanan got in touch with us because she wanted 

to help others fi nd technical solutions for everyday problems. 

She tells us what technologies are helping her live her life. 

ABOUT ANNE 

Programmer and 

systems analyst 

Anne Callanan 

was diagnosed 

with MS in 2001. 

After experiencing 

trouble with her 

back, and a series 

of false starts 

and investigations by an 

unobservant GP, Anne 

Callanan was fi nally 

diagnosed with MS the 

day after 9/11 in 2001. 

‘To be honest,’ she says, 

‘I thought I had cancer 

of the spinal cord, so 

there was almost this 

sense of relief.’ 

As a programmer and 

systems analyst, Anne has 

had extensive experience 

of using IT systems, so 

she is keen to adopt new 

technological solutions that 

can help people with MS. 

Anne stresses that anyone 

could use these products 

after a bit of practice. 

Assistive technology 

products are designed 

to provide additional 

accessibility and freedom 

– without it Anne would 

be reliant on her carers, 

with little control over her 

environment. She uses a 

wheelchair and is unable 

to use her hands, so she 

relies on her equipment to 

be able to communicate 

with friends and family. 

Watching Anne operate 

the Eyegaze system is 

a bit like watching ‘Star 

Trek’, but she scoffs at 

the idea that this is high 

tech. ‘I got two days 

of training when they 

installed the equipment, 

but it’s only after you’ve 

used if for a while 

that you realise what 

you need to know. The 

important point is that you 

need to be patient and put 

in lots of practice. 

‘There is a wealth of 

new technology that could 

be useful to people with 

disabilities but they haven’t 

properly thought through 

its application yet. It’s all 

out there, though.’ 

Voice preservation 

Another application of 

technology that interested 

Anne was preserving her 

voice for posterity with 

Model Talker, a speech 

synthesis software 

package designed to 

benefi t people who are 

losing or who have already 

lost their ability to speak. 

You can record and 

use a synthetic version 

of your own voice for 

communication. ‘It hasn’t 

actually worked for me, my 

voice isn’t strong enough. 

I’m worried that my voice 

will be gone before they 

iron out the glitches.’ 

Anne uses a microphone 

and voice amplifi er, 

HERE TO HELP The MS Society has merged with technology specialist charity 

Speakeasier to provide financial assistance for those requiring speech aids. Apply for a grant 

from grants@mssociety.org.uk or call 020 8438 0700. Equipment that clients currently 

have transferred to them upon the merger. Download our free publications on speech and 

swallowing difficulties from our website or by calling 020 8438 0799. 

Photos: Polly Hancock. 


SCREEN READERS 

These programmes ‘speak’ 

everything on the screen out loud 

(including text, graphics, control 

buttons and menus) in a computerised 

voice. In essence, a screen reader 

transforms a graphic user interface 

(GUI) into an audio interface. Anne 

uses this to link in with Kindle 

narrator, which reads her 

books to her. 

EYEGAZE SYSTEM 

This system has an inbuilt 

camera that tracks where Anne’s 

eyes are looking, enabling her to move 

the mouse pointer around. She can 

‘click’ by blinking, dwelling (staring 

at the screen for a length of time) or 

using a switch. She’s still practising 

this as it’s harder to control 

than voice recognition. 

ENVIRONMENTAL 

CONTROL 

An environmental control system 

is electronic technology that can 

be operated remotely and enables 

Anne to control access to her home, 

summon emergency help, operate 

the telephone, TV, video and stereo 

and switch electrical power 

on and off for lighting and 

other appliances. 

MOUSE 

CONTROL 

Anne can use the 

controller for her chair 

to control her mouse. 

iPortal works on both 

Apple and Microsoft 

systems. This kit 

comes from System 

Dynamics. 

Insight 

VOICE RECOGNITION 

SOFTWARE 

Anne speaks and the words appear 

on her computer screen. She tells 

the program what she wants it to 

do and it executes the task: “Open 

Microsoft Word”, “Set font size to 18” 

or “Minimise all windows”. She uses 

voice commands to edit and 

format text, search the web 

or send emails. 

currently, to maximise the 

voice she does have. ‘I used 

Skype recently, and had 

the best conversation with 

my brother that I’ve had in 

fi ve years. He could see 

me, which helped, and the 

amplifi er also helped. 

‘Producing an email is 

quite quick and accurate, 

but some of this stuff has 

too many bells and whistles; 

sometimes I get a bit skewwhiff 

with all these bits I’ll 

never use. I’m still a beginner 

with the Eyegaze software 

and it’s easy to overshoot 

where you want to be. Even 

after two weeks I don’t have 

it totally under control. It’s 

also easy to get distracted! 

‘You can’t let yourself get 

frustrated. When I was 24 

or 25, I was very impatient. 

A few things happened and 

I realised that sometimes, 

you have to know when 

something is just good 

enough, and no more. 

Embrace technology 

‘The voice recognition 

stuff seizes up quite 

often and, when it does, 

you’re potentially banjaxed, 

aren’t you? In the past, 

I had to wait until an ablebodied 

person came in 

so they could fi x it by 

hand. Now I can switch 

between different tools, 

which really helps.’ 

Anne is philosophical 

about using modern 

technology to help solve 

everyday problems. You 

wouldn’t use a washboard 

and a mangle when you 

could use a washing 

machine, so why not use 

computer technology if it 

can make things easier? 

‘I’d be lost without all this 

stuff. The fi rst thing I had 

was the environmental 

control unit; I could still 

use a mouse then. The 

computer is my favourite 

bit of kit. It allows me the 

freedom to do lots of things 

I want to do. 

‘It’s 2013. Don’t 

be ashamed of using 

technology to make your 

life better and easier. Use it 

and be proud.’ 

When selecting assistive 

technology products, it 

is crucial to fi nd products 

that are compatible with 

the computer operating 

system and programs on 

the particular computer 

being used. Talk to your 

GP or MS Nurse to fi nd out 

what services are available 

in your area. 

For independent reviews 

of assistive technology 

go to the Disabled 

Living Foundation 

www.dlf.org.uk or 

call its helpline on 

0300 999 0004. 


Insight 

“ “ 

Constantly being 

presented with articles 

which bear absolutely 

no resemblance to our 

daily lot is really 

starting to wind us up 

“ 

The head-in-thesand 

approach is 

useless, of course, 

and makes it harder for 

us to cope when we 

are confronted with a 

devastating disease 

“ 

Why 

DON’T 

weTALK 

about...? 

SEVERE MS 

In the fi rst of a new series looking at hard-to-talk-about 

subjects, Hilary Freeman considers why we fi nd it so diffi cult 

to face the realities of life for people severely affected by MS. 

ABOUT HILARY 

Hilary Freeman is an 

experienced journalist, 

agony aunt and 

novelist. She was 

diagnosed with MS in 

1997 and is the author 

of Just Diagnosed: an 

introduction to MS. 

Why don’t we talk 

about severe 

MS? It’s a good 

question, and one 

that correspondents to 

MS Matters regularly ask. 

Debbie Domb, for example, 

wrote complaining about 

the message ‘to be 

positive’ that she believes 

is contained in our articles. 

She says that the stories 

we cover present a 

‘relentlessly upbeat and 

frankly false picture’ of MS. 

Mary Butler, who cares 

for her tetraplegic husband, 

agrees. ‘My husband will 

never again clean his own 

teeth, let alone garden, 

swim, drive, fl y or carry out 

any of the other activities 

commended in this most 

recent edition. Constantly 

being presented with 

articles which bear 

absolutely no resemblance 

to our daily lot is really 

starting to wind us and – 

to judge from the letters 

on the topic – a number 

of other readers up.’ And 

Barbara Annells writes 

to say that she feels the 

magazine contains little of 

interest or use to people 

with advanced MS. She 

says: ‘There appears to be 

no information regarding 

things like how to get to a 

dentist when you cannot 

transfer, or how one is 

supposed to call for help 

when you cannot move, 

or cannot call out because 

of a weak voice. If you are 

living in a care home and 

are totally reliant on people 

to help you and all you do 

is sit in front of a TV, what 

else can you do?’ 

Although those who 

will become severely 

disabled by MS are in the 

minority, between 10 and 

15 per cent of people with 

the condition do have to 

face this prospect. They 

will lose not only their 

mobility, but also their 

ability to eat, speak or 

leave their beds: their 

independence. So why 

don’t we talk much 

about this most serious 

type of MS, which has 

the biggest impact on 

people’s lives? 

The truth is, nobody 

seems to want to talk 

about severe MS. An 

internet search throws 

up very little: a few chat 

forums, some statistical 

studies and hospice 

information, but hardly any 

pages containing research 

information, advice or 

personal stories. People 

with severe MS seem 

almost invisible. It appears 


Insight 

“ “ 

It appears that the 

disease robs those 

most severely 

affected of their 

voices, both literally 

and metaphorically 

“ 

We don’t know 

what to say about 

severe MS. And so, 

rather than say the 

wrong thing, we choose 

to say nothing 

“ 

that the disease robs those 

most severely affected of 

their voices, both literally 

and metaphorically. 

What lies at the heart of 

the problem is, most likely, 

fear. As a society, we don’t 

like to talk about cancer 

much either. Or miscarriage. 

Or bereavement. And these 

are things which, unlike 

severe MS, affect almost 

everyone. We certainly 

don’t like talking about 

death, despite its 

inevitability. From an 

early age, we are taught 

to fear disease, to think of it 

as something that happens 

to other people, something 

we shouldn’t have to worry 

about until we’re very old. 

The head-in-the-sand 

approach is useless, of 

course, and makes it 

harder for us to cope when 

we are confronted with 

devastating disease. 

People used to cross the 

road to avoid someone with 

cancer, for fear that it was 

contagious. That attitude, 

although improving, still 

persists. A friend of mine, 

who lost her husband very 

young, says some people 

simply avoided talking to 

her afterwards – at the 

time she needed them the 

most. They hadn’t stopped 

caring: they just didn’t know 

what to say. And that’s 

half the problem: we don’t 

know what to say about 

severe MS. And so, rather 

than say the wrong thing, 

we choose to say nothing. 

All about hope 

If you are young, or newly 

diagnosed, or just about 

coping with a worsening 

condition, the last thing you 

want to think about is how 

bad things might get. What 

you want to hear about are 

treatments that can help 

you, gadgets that will make 

your life easier, people 

who inspire you because 

they are achieving things in 

spite of their MS. You want 

to believe that somehow, 

everything is going to be 

all right. It’s not so much 

about positivity as it is 

about hope. 

Sadly, for those with 

severe MS, there is not yet 

much hope on the horizon. 

There is no treatment 

currently available which 

reverses the damage 

wreaked by MS, and very 

little to counter progression 

or even to satisfactorily 

soothe symptoms. At the 

same time, there’s endless 

media coverage of the 

inadequacies and abuses 

in care homes, cuts to 

disability benefi ts and care 

packages, discrimination 

against the poorest and 

most needy. 

In MS Matters, we 

do try to be relevant and 

interesting to everyone 

with the condition. But 

the sheer size and variety 

of the MS community 

– which contains both 

the very young and 

the very old, the mildly 

affected and the severely 

disabled, and everyone 

in between – makes 

this a diffi cult, if not 

impossible, task. No 

two individuals with MS 

are alike. Talking about 

swallowing problems in 

severe MS alienates the 

newly-diagnosed, just as 

stories about marathonrunning, 

Everest-climbing 

fundraisers alienate those 

who can’t feed themselves. 

We are constantly trying to 

think of ways to overcome 

this problem. 

OVER 

TO YOU 

What aren’t we 

talking about that 

we should be talking 

about? We want 

you, the MS Matters 

readers, to tell us 

what subjects you’d 

like to read about 

in future issues. 

What taboos should 

we be breaking to 

better reflect life 

with MS? Please 

tell us what you’d 

like to see featured 

and discussed in 

this column. Email 

letters@mssociety. 

org.uk or write to 

MS Society, 372 

Edgware Road, 

London NW2 6ND. 


My 

Experience 

Arthur 

Goddard 

Disabled parking 

Arthur Goddard provoked a furore with a 

letter to MS Matters arguing that disabled 

parking spaces should be for wheelchairusers 

only – see page 15 for some of the 

letters we received in response. We find 

out more about the man behind the pen. 

What prompted 

your letter? 

There seems to be an 

epidemic of Blue Badge 

holders and disabled 

parking is usually 

watered down with just 

a couple of spaces wide 

enough for a person to 

unload a wheelchair. 

The ‘walking wounded’ 

need less space. 

I know there are 

different kinds of 

mobility problems 

but something’s amiss 

when more and more 

people get out of 

their car and walk off 

without a limp. It is 

exasperating. 

I don’t challenge 

them because I don’t 

want a stand-off in 

the car-park. 

How could the 

problem be dealt with? 

There should be much 

more monitoring. They 

could make the money 

to pay the monitor from 

parking tickets. 

Are you glad 

you provoked 

such an uproar? 

As an ex-school 

master, the world is 

my classroom. I voice 

things that I see, 

whether I am in favour 

or against. I have been 

getting more and 

more upset about the 

misuse of disabled 

parking bays. I am 

pleased my comments 

stirred people up and 

hit a nerve, rightly 

or wrongly. 

How does MS 

affect you? 

My main problem is 

fatigue. I get so far and 

then I have to close my 

eyes and let the world 

go by. Of course, one 

can’t lose interest in 

life so you have to take 

every day as it comes, 

from the top of the 

world to hell. 

What else makes 

you angry? 

When I see youngsters 

and adults who are 

physically fit but who 

throw their lives away 

through drink or drugs. 

I wish I could swap my 

health for their health. 

What makes 

you happy? 

Sitting on a narrowboat 

on some beautiful 

canal, watching the 

countryside pass by 

and nobody knowing 

I have MS. 

Interview by 

Marianne Gray 

About arthur 

Arthur, 73, lives in 

Nottinghamshire, 

with his wife, Patricia, 

who is now his carer. 

Their eldest son is an 

engineer, their middle 

son died aged 31 

from an asthma attack 

and their youngest 

is a pilot. Arthur was 

diagnosed with primary 

progressive MS in 1988 

and now uses a scooter 

and a wheelchair. He 

worked as a cabinetmaker, 

became a craft 

teacher and then head 

of an annex within a 

large comprehensive 

school, dealing mainly 

with children with 

behavioural problems. 

Blue badges The badges are issued to drivers with severe walking difficulties to 

enable them to take advantage of the nationwide network of on-street parking concessions. 

Blue Badges may also be issued to able-bodied people who are the designated driver for a 

disabled person. You can check your eligibility and apply online at www.gov.uk. Or get in touch 

with your local council, which will also have details of parking spaces for Blue Badge holders. 

Photo: Michael Penty

MS Matters July-Aug 2013 Cymru - Multiple Sclerosis Society

You also want an ePaper? Increase the reach of your titles

Delete template?

Save as template?