I wanted to show that it can be done

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Living well with MS
“ I wanted to
show that it
can be done”
Aidan Ferguson
on his epic cycling
challenge
WINTER 2015
ISSUE 118
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RADIO GA-GA
KEITH FOUND A NEW
CAREER ON THE AIR
REAL LIFE
Being a mum with MS
Leaving a legacy
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Multiple Sclerosis Society
01
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MS news
Happy New Year! We’re a month into 2015 and we’ve already kicked off some
big pieces of work. We’ve started implementing our new five-year strategy
with ambitious plans to make real progress in MS treatments, research, care
and support.
Research focus
Part of our new strategy is campaigning on issues that you care about, and I’m
proud to say that our Treat Me Right campaign was voted voluntary sector
campaign of the year in the Public Affairs Awards. We’ve already seen it make a
difference and are very proud of everything it has achieved. There is still more to
be done, however, and we will continue on with the fight to ensure everyone
with MS is able to access the right treatment for them. Read the story here
Leaving a legacy
Access to treatment was certainly high on the list of what people with MS said
they wanted from a new government. It’s vital to make our voices heard in the
run up to the General Election – we know that candidates have already begun
knocking on your doors. Read all about our general election plans
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I’m looking forward to rolling up my sleeves and working with you this year.
Together we’re getting closer to beating MS.
Michelle Mitchell
Chief Executive of the MS Society
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CALL TO ALLOW
RELICENSING
OF DRUGS
REAL LIFE
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MPs must cut red tape blocking
the relicensing of drugs.
Currently, drugs can’t be relicenced for new purposes. Drug
manufacturers must go through
a lengthy application process if
a drug shows promise treating a
new condition.
In a front page story and letter in
the Daily Telegraph,
the MS
Society and a group of
neurological experts claimed the
current system is failing tens of
thousands of people with MS.
Overhaul drug laws
We’re calling for an overhaul of
current drug laws, to allow
medicines to be ‘repurposed’ to
treat different diseases to those for
which they were initially licensed.
There is evidence that a number of
drugs could be effective in the
treatment of MS. Our Chief
Executive Michelle Mitchell. ‘In
progressive MS, symptoms
gradually worsen, and there are
currently no medicines that can
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slow or stop the accumulation of
disability. This can leave people willing
to try anything. We know some even
consider unproven therapies, which
might be expensive or dangerous to
their health. The off patent drugs Bill
proposes a fast and cost-effective
way to make new medicines available.
We urge MPs to help cut the red tape
that prevents innovative treatments
reaching the people who need them
the most.’ Read more about the
latest progress of the Bill
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REAL LIFE
Being a mum with MS
Leaving a legacy
Independent Living
Fund closing June 2015
The Government’s decision to close the
Independent Living Fund (ILF), which helps 18,000
people with severe disabilities to work and live
independently, has been ruled lawful by the High
Court and will close in June 2015.
After June the responsibility for supporting ILF
users will fall to English local authorities, and the
devolved administrations of Scotland, Wales and
Northern Ireland. Many worry that the change
will result in a postcode lottery, with the UK’s ILF
recipients left at the mercy of the different policies
and financial decisions of individual councils.
Disability Rights UK
is helping people
prepare for the transition and features independent
living information on their website. It also has an
independent living helpline on 0300 555 1525.
Read more about the ILF
Hey Ho, it will grow!
A Cornish woman has shaved her head, raising over
£8,000 to help fund her local MS Centre. Sandy
Hatcher, 56, used to have a head of thick, dark hair.
As a community nursing sister, she’s only too aware
of how MS affects patients, carers and families. ‘My
mum demonstrated amazing courage while battling
progressive MS for over 15 years, never losing her sense
of humour,’ says Sandy. ‘My partner Rebecca’s brother
had progressive MS too – sadly, he too has now died.’
Passionate about supporting an unsung worthy cause,
Sandy decided to raise funds for Cornwall’s Merlin MS
Centre. It was built using funds raised by local people
and today is run on charitable donations. Friends, family,
staff and those who visit the centre all came along to
watch Sandy getting her head shaved for this worthy
cause. ‘The centre is in a beautiful setting, providing
peace, joy and tranquillity in abundance to its users.’
Read more about the Merlin Centre
Read more about MS Therapy centres near you
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VOLUNTEER
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call 020 8438 0700
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REAL LIFE
Being a mum with MS
A DOG AND A CAR
CHANGED MY LIFE
I WANT TO RIDE MY
TRICYCLE
A Bristol woman has discovered how much
emotional support and physical help a
caring dog can provide. Katy Pitsi, 46, was
diagnosed with MS in 1994. When her MS
worsened, she applied to the council for
rehousing. After living in the same area for
thirteen and a half years, Katy realised she
needed a home where she could use her
mobility scooter. ‘After a couple of years I
was finally top of the list and was offered a
bungalow across town. I knew nobody, so
decided to adopt my dog Simba.’ Around the
time Katy got a VW Caddy which she could
operate herself, which means lots of trips out
for her and Simba.
Find out more about mobility vehicles
Do you want to adopt a dog?
Mark Harrison was diagnosed with MS in 1994.
After experiencing mobility problems he wanted
to find something that helped him bridge the gap
between walking with a stick and needing to use
a wheelchair. ‘I’ve always cycled since my youth
but thought since diagnosis maybe a tricycle
could be safer. Everything I looked at seemed
childlike and with nothing on the market that
worked for me, I decided to make my own ‘Triple
Tread’. I want to help other people in the same
position who want a cycle that looks as good as
it moves. We’ve so far self-funded the project
and are now in the process of looking into other
funding options and partnerships which will
progress manufacture. We’d like to create a
new paradigm and challenge misconceptions
about disability.’See Mark’s trike in action
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VOLUNTEER
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Cymruupdate
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REAL LIFE
Sativex
available on
NHS in Wales
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Landmark treatment for spasticity
for Welsh patients.
Wales is the first place in the
UK where Sativex has been
approved as a treatment on the
NHS for spasticity in people with
MS. Sativex is a cannabis-based
medicine that comes in the form
of a mouth spray and is licensed
in the UK for those who have
moderate to severe spasticity,
and who have not responded
adequately to other anti-spasticity
medications.
The decision sets Wales apart
from the rest of the UK where the
drug has not yet been approved
for use.
Lynne Hughes, Country Director
for Wales, said: “The MS Society
has campaigned for years for this
treatment to be made available
on the NHS. Muscle spasms and
stiffness in MS can be painful
and distressing – and a treatment
that can potentially alleviate these
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symptoms could be life changing.
Sativex has been licensed as safe
and effective for people with MS and
for many people it’s their only viable
treatment option left. We’re pleased
that Wales is leading the way.”
Read more about treating
muscle spasms and stiffness
We believe that everyone with MS
should have the right treatment at the
right time. Join our campaign
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REAL LIFE
Being a mum with MS
MS Week in Wales
Thank you Principality!
We’re gearing up for MS Week 2015, 27 April
- 3 May. The week launches with our Severn
Bridge fundraiser – walk or wheel across in
this unique sponsored walk. We’ll provide
entertainment, refreshments and games, so
it’s a great day for all the family! Visit our
website for more info.
You can also join
us at our Cymru Annual Meeting, part of our
wider MS Week reception at the National
Assembly for Wales on 28 April. It’s a great
opportunity to share experiences and explore
what the Society’s new strategy means for our
work in Wales. We will also be continuing our
Treat Me Right campaign, ensuring that
Assembly Members champion access to
disease modifying treatments, specialist
nurses and neurologists through the
Neurological Conditions Delivery Plan.
Register your place.
At the beginning of 2014 we received the
fantastic news that Principality Building Society
had chosen us as their charity of the year.
Louise Czekaj, who works for the company,
championed us, promising if we were chosen
she would shave her head. Over the last 12
months the enthusiastic staff have raised over
£70,000 – what an achievement. In every
one of the 53 branches and 17 agencies staff
rose to the challenge, doing everything from
bathing in beans to zorbing. Louise made
good on her promise and her head shave
raised over £3,000. A huge thank you to all
the brilliant staff.
Could you be an MS Society champion for
your employer? We’d love to hear from you.
Contact Iestyn Evans on 029 2167 8920 or
email iestyn.evans
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fundraise
FOR US
Get in touch with your
local fundraising team.
Watch Vince
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REAL LIFE
Being a mum with MS
Leaving a legacy
CHANGES TO
SOCIAL CARE
IMPROVING LOCAL
SERVICES
This year, we’ll be working with the Welsh
Government to make sure that the new Social
Services and Well-Being Act creates a system
that is as clear as possible for people with
MS, and that you have up-to-date information
on how the Act might affect you.
The Act was passed in April 2014, although
it won’t come into effect until April 2016. It will
mean that local councils will have to provide
support (subject to an assessment) that meets
various well-being statements. These include
emotional well-being, individuals being able
to develop their full potential and contribute
to society, and people having suitable living,
working and social arrangements.
The Govrnment is now publically consulting on
its plans, which are very detailed. Read the
Governments plans here.
Last year, the South West Wales Service User
and Carer Forum developed an action plan to
improve the experience of people with MS,
their families and carers. Issues included
treatment in hospital and access to social
care. The forum has received funding from
the Changing for the Better
grant scheme
and will continue its work over 2015.
In Powys, a series of workshops has
revealed the need for better defined,
dedicated services in the area and for more
MS nurse time. We have supported Michelle
Price, consultant therapist for stroke and
neuro-rehabilitation, to lead the workshops.
She will develop an action plan to address the
issues raised. To get involved with improving
local services, please contact our team on
02902167 8921 or email
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REAL LIFE
Being a mum with MS
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Campaign with us in 2015
With the General Election on 7 May, campaigning is in full swing.
We’ve identified a number of key policy issues in consultation with
people with MS Read more about the general election.
Our Scotland team will be focusing on the issues that are most
important to people living here, and will be using MS Week (27
April to 3 May) to take our campaigning to Holyrood. We’re keen to
hear your views! To get involved email scotlandcampaigns@
mssociety.org.uk. Also keep an eye on our website and
social media for events coming up.
Meet our new team members
Gillian Clifford has joined as Policy, Press and Campaigns Manager
and Aislinn Lunt is providing maternity cover as Head of Policy and
Communications. Gillian and Aislinn will be leading our
campaigning work in Scotland – contact them at Gillian.clifford@
mssociety.org.uk
or [email protected]
New drug
approved
We’re delighted that new
medicine Plegridy has been
approved for use on the NHS in
Scotland for people with
relapsing remitting MS.
Read more about Plegridy.
If you have MS, you have the
right to request a meeting with
your neurologist to discuss your
treatment options and find the
best option for you. Find out how
to ask for an appointment and
learn more about all the currently
available treatments on our
Treat Me Right website.
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PUT MS ON THE GENERAL
ELECTION AGENDA.
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REAL LIFE
Being a mum with MS
Leaving a legacy
New toolkit
for carers
Letters about MS
diagnosis
insight
Carers Scotland has produced a toolkit of resources
for carers. Caring can be very rewarding but it can
also be very isolating, and it can be hard to know
how to get help. The toolkit will help carers:
communicate effectively
better navigate ‘the system’
become more savvy
deal with the emotions that can inhibit
self expression
increase their sense of independence
and confidence.
Download the free guide here.
If you are a
carer you can also ask your local carers support
organisation to run a training session on using the
toolkit in your area. Contact Amy Anderson at
[email protected].
to find
out more.
Step Inside MS is a collection of letters written by
people about their experience of being diagnosed
with MS. Put together by Glasgow-based writer
Gillian Sherriffs, who has MS, the project started as
part of her masters in creative writing at Glasgow
University. Now a book, exhibition and available
online, the letters have toured libraries in central
Scotland and been displayed in the Scottish
Parliament. To read the 32 moving, insightful
and inspiring letters, visit
www.sunshinescot.com.
Pictured: Couple, Elaine and Martin, diagnosed
with MS within a year of each other
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Watch a film about
diagnosis here.
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REAL LIFE
Being a mum with MS
Leaving a legacy
JOIN OUR EDINBURGH
MARATHON TEAM
COPING WITH COGNITIVELY
CLOUDY DAYS
Our team of MS superstars are gearing up for
this year’s Edinburgh Marathon Festival on
30-31 May! Kirsty Jacobs from East Kilbride is
running for her mum Lynda, who has
progressive MS. “Since I’ve started raising
money I’ve found out more about treatments
for progressive MS,” Kirsty says. “I’m looking
forward to the day of the marathon and seeing
all the other people wearing orange t-shirts,
and running to help make life better for people
with MS.” Sign up online
, and check
out our other great fundraising events in
2015
. Don’t feel like getting sporty to help
beat MS? Why not get baking instead!
Karine from Edinburgh writes: “Some days, fatigue
knocks me for six and I call these days ‘cognitively cloudy’.
On those days, I don’t even acknowledge or remember
much of what happens. I can be in the middle of a
conversation one minute, then the next I am looking at you
blankly, not taking in any information. I am like a computer
screensaver, you need to give my arm a little wiggle to
wake me up again. My partner Sarah is very used to this,
but I fear others may think I am rude! Fatigue is a tough
symptom to deal with and we all our own special ways of
trying to handle it. But mostly, we look a bit like zombies
trying to get on with our day!
Karine was diagnosed with MS in 2013. She lives in
Edinburgh with her partner Sarah and works as a senior
business associate. She blogs at
mymsmonologue.wordpress.com
Read more about Karine and see all our blogs
Get help with fatigue
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REAL LIFE
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MS Respite
In November, the Northern
Health and Social Care
Trust
announced that the
MS Respite Unit at Dalriada
Hospital, Ballycastle would
temporarily close between
November 2014 and March
2015. However the High Court
halted this decision and the MS
Respite Unit remains open and
may be accessed by people
affected by MS from throughout
Northern Ireland.
What can you do?
We want everyone to have
access to a range of respite
options that meet their needs.
We’re gathering information about
the respite services people are
currently accessing and what
respite options they would like to
see available in the future. You
can help by completing our
respite care survey.
Alternatively, you can provide
feedback by telephoning Brenda
Maguire (Policy & Campaigns
Manager) by calling 028 90 802
802 or email Brenda.Maguire
@mssociety.org.uk
Managing MS
Palliative care
the MS Respite Unit in Dalriada
hospital or another form of
respite, contact your Social
Worker or ask your GP or MS
health care professional for a
referral. For more information
contact Charlotte Shirley, Local
Networks Officer charlotte.
[email protected] or
028 90 802 802
You can also apply for a grant to
fund a short break or activity via
the MS Society Short Breaks and
Activities Fund.
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Download
our short
breaks and
respite care
guide
How can I access respite?
If you wish to access respite at
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Lord Mayor
celebrates Unsung
Heroes
The Lord Mayor of Belfast Councillor Nichola
Mallon invited MS Society members, volunteers
and staff to the Mayor’s Parlour in November
for a special event to celebrate their role in
supporting people affected by MS in Belfast.
The Lord Mayor met with volunteers from the MS
Society’s Belfast Day Centre including Josephine
Begley, Edna Rice, Robert Connor and Arnold
Gardiner who together have dedicated more
than 40 years of volunteering for the MS Society
at our Belfast Resource Centre. The Lord Mayor
said: “The volunteers and staff that help those
who suffer from the condition truly are unsung
heroes, and they deserve to have their selfless
work celebrated and recognised.”
Get active in 2015
The New Year is traditionally a time to set new
challenges. If your resolution is to be more active why
not try one of our MS Society exercise classes?
Research demonstrates that regular exercise can
help people with MS alleviate their symptoms and
manage their condition more effectively. It can help
people with MS stay as mobile and active as possible,
due to improved muscle strength and fitness which
can help with mobility and weakness problems. Ivan
Prue is encouraging people to give the classes a go.
He said: “I really believe that keeping active is an
important weapon against MS. Whether it’s running or
gentle exercise and stretching I firmly believe that it
helps me to fight back. I’m really pleased to that the
MS Society is offering MS exercise classes and I’d
really encourage everyone affected by MS to give it a
go!”. For more information contact MS Society
Resource Centre [email protected].
uk or 028 90 802 802
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fundraise
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Get in touch with your
local fundraising team.
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REAL LIFE
Being a mum with MS
Leaving a legacy
PARENTS GROUP
BELFAST MARATHON
Are you a parent with MS? The majority of people
who have MS are diagnosed in their twenties and
thirties, at a time when they may have young
children or are thinking about starting a family. Our
parents group provides information and support
for local parents affected by MS. The group is
informal and provides a relaxed setting to share
experiences. We also invite guest speakers to
attend to provide useful information and advice
including an MS nurse and a complimentary
therapist. All welcome. Come along on the
second Tuesday of every month between 10.3011.30am at the MS Resource Centre,
Belfast. For more information contact the
Development Team by calling 028 90 802 802 or
email nidevelopmentteam@mssociety
.org.uk
Our team of MS Fundraising Heroes are
gearing up for this year’s Belfast City
Marathon on 4 May 2015. Tim Higgins from
Portstewart is running for his dad, who was
diagnosed with MS 10 years ago. Tim says:
“I didn’t even know what MS was when my
Dad was diagnosed 10years ago. I hope to
raise awareness and support those who live
with the condition and the carers involved.
Running my first marathon is a small but
significant way for me to show my support.
Join me!” Sign up for ‘Team MS’ online and
remember you can take part in the
marathon, relay, fun run, 8 mile walk or
wheelchair race
Check out our other
great fundraising events in 2015 on our
website
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PUT MS ON
THE GENERAL
ELECTION AGENDA
MS news
The countdown to the 2015 General
Election is well underway, and we need
your help to put MS on the political agenda
for your local candidates and their parties.
INSIGHT
This is one of the few times that
politicians come knocking, eager
to know what matters to you. MPs
should be champions for people
affected by MS in their local area
and parliament. Tell them how
they can work for you.
We asked people affected by
MS what the next government
should do for them. This is what
they told us. Perhaps that’s what
you can tell the candidates when
they knock on your door.
1.Give MS a voice
2.Challenge and change the
way society talks about
welfare and disability.
3.Fight for people with MS to
access the care they need
when they need it
4.Make sure assessments
for disability benefits are
appropriate
for people with MS.
5.Ensure people with MS can
access the right treatment
at the right time
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What can you do?
1.Make sure you’re registered
to vote
2.Quiz candidates and tell us how
it went. Download a
door hanger from our
dedicated website
from Feb 4th
3.Write to your local
candidates.
4.Host a hustings event with your
local candidates in your local
branch. There will be more info on
our website from Feb 4th
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NEWS
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Society news.
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Right to die campaigner
Debbie Purdy dies
Debbie Purdy, who had MS, died on 23 December
2014, re-igniting the media debate on assisted
suicide. In 2009, she won a high court ruling to clarify
the law on assisted suicide to determine whether her
husband would be prosecuted in the event of his
helping Debbie to travel to Dignitas,
the assisted
dying clinic in Switzerland. As her condition
deteriorated, she became physically unable to travel,
and so was unable to take the journey she had
wished for. Michelle Mitchell, our chief executive,
says, ‘Debbie Purdy will be much missed by all those
who knew her. The MS Society neither supports nor
opposes assisted suicide. But we believe that there
is good evidence that the right palliative care can
make a big difference to quality of life for people with
severe MS and the focus must therefore be to
provide everyone with the holistic and dignified
palliative care they need.’
Read more about Debbie’s life
Download our Support and planning ahead
booklet
REAL LIFE
PUBLIC AFFAIRS AWARD
Our Treat Me Right campaign has won the
inaugural Public Affairs Award for Voluntary
Sector Campaign of the Year. We launched
the campaign in April 2014 to call for the right
treatment at the right time for people with MS.
‘I am absolutely thrilled to see the strength
of the MS community and the Treat Me Right
campaign recognised in this way,’ says
Michelle Mitchell, chief executive of the MS
Society. ‘It is an incredibly important campaign
for the MS Society and people with MS. We
have already seen the campaign make a
difference, and we’re very proud of everything
it has achieved. Of course, there is still more
to be done, and we will continue on with the
fight to ensure everyone with MS is able to
access the right treatment for them.’
Find out more and join our Treat me right
campaign
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get in
contact
MS HELPLINE
0808 800 8000
[email protected]
MEMBERSHIP
020 8438 0759
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Being a mum with MS
Gilenya fails
clinical trial
for PPMS
Trials have found that the drug
was not able to delay disability
progression in people with primary
progressive MS, according to
the phase 3 clinical trial results
announced in December. GILENYA
(also known as fingolimod) is
currently licensed in the UK for the
treatment of highly active relapsing
remitting MS. Researchers
believed that the effect Gilenya has
on the immune system may also
have been beneficial for people
with primary progressive MS.
Manufacturers Novartis carried out
a global phase 3 clinical trial involving
940 people with primary progressive
MS, known as INFORMS. The
trial aimed to evaluate the effect of
Gilenya (in the form of a once-daily
tablet) on delaying the progression
of disability compared to a dummy
drug. Novartis has announced
that results from this trial indicate
that Gilenya is not an effective
treatment for primary progressive
MS. The full results will be
presented at an upcoming scientific
conference. While these results are
disappointing, they do not affect the
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proven effectiveness of Gilenya
in relapsing remitting MS. More and
more research into understanding
and treating progressive MS is being
done – there’s now real momentum
and hope of finding new treatments.
The global research community –
The Progressive MS Alliance
is gaining new knowledge, funding
new projects and running new
clinical trials.
Read more about what we’re
doing about progressive MS
home
17
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salt levels LINKED
TO SYMPTOMS
We all know that eating too much
salt can lead to health problems
for everyone. But it might now
have repercussions for people
with MS too. In 2013, researchers
in the USA discovered that salt
levels appear to affect cells in the
immune system. In animal models
of MS, high salt levels caused
cells to produce factors that
triggered inflammation, which
resulted in more severe damage
occurring compared to lower salt
levels. This suggests that salt
levels could be linked to
inflammation. A recent paper in
the Journal of Neurology,
Neurosurgery and Psychiatry
(JNNP) by researchers in
Argentina has found that people
with average or above average
levels of salt in their urine were
more likely to have relapses or a
greater chance of developing new
lesions compared with people
with below average levels. In
general, we all know we should
be aware of how much salt we’re
putting on our chips. According
to the NHS,
most people eat
too much salt on a day-to-day
basis. High salt levels can cause
an increase in blood pressure,
which has been linked to an
increased risk of developing heart
disease and stroke. There is no
definitive evidence to show that
any specific diet has an effect on
the development and progression
of MS. For most people with MS,
the best diet is a healthy, varied
one. If you are concerned about
your salt intake, or any aspect of
your diet, speak to your GP or
another healthcare professional.
Read the full story
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MS MATTERS IS ALL ABOUT YOU
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
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REAL LIFE
NEW TRIAL INTO HELP WITH
ATTENTION AND MEMORY
A cognitive rehabilitation trial in
people with MS has been awarded
£1,167,000 by the NHS’ Health
Technology Assessment (HTA)
programme. The trial, known as
CRAMMS
Cognitive
Rehabilitation for Attention and
Memory in people with MS, will test
whether a group cognitive
rehabilitation programme can
improve quality of life for people with
MS. Many people with MS
experience problems with
cognitive processes
,such
as memory, decision-making and
concentration. Unfortunately there
are few effective treatments
available for these symptoms. The
CRAMMS trial will directly contribute
towards the development of a
therapy that could help people
experiencing these problems.
We’re funding a related project
linked to the study (Delivering
cognitive rehabilitation to
people with MS)
that will
involve interviewing the people
taking part, in order to learn more
about their perceptions and
experiences of receiving cognitive
rehabilitation therapy.
Find out more about signing
up to participate
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letters
when manual handling
becomes manhandling
I am a 70-year-old retired Police
Inspector with SPMS, and a
frequent flyer. When I booked my
latest flight, I was coded WCHC
CHARLIE by the special assistance
team (codename for wheelchair
users with severe mobility
problems, who require lifting). After
the plane had been emptied, and
lift eventually arrived, two airport
staff struggled to lift me from the
aircraft seat by holding me from
under my armpits and behind the
knees to place me into the aisle
chair. My upper clothing was pulled
up above my chest, and the whole
experience was uncomfortable and
traumatic. The aisle chair was lifted
to the ambulift, and I had a similar
experience as they struggled to
get me into my personal travel
wheelchair. I am firmly of the view
that all manual handling should be
discontinued. The procedure is not
safe for anyone involved.
— Tony Jones – Weston
Super Mare
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Ed writes: We are planning an
article about manual handling
at airports in the next issue of
MS Matters. What’s your
experience been?
Email us at msmatters@
mssociety.org.uk
’Coz I’m Appy
I have used a smartphone for
four years, but Apple products
are expensive! If someone would
sponsor people with MS and
provide them with an iPhone, we
would all benefit. Until that time,
perhaps apps could be developed
for use on Android phones too?
— Jacqueline, by email
Ed writes: We agree, Apple
products are expensive,
and what a great thing it would
be if all pharma companies
sponsored people with MS
for a smartphone!
An Android version is
coming for Symtrac
Read about other useful
apps
which have Apple
and Android versions.
Thank you MS Matters
Without you, I’d probably have
given up by now. With more
deteriorations bullying me into
accepting my illness, your
magazine has helped me
understand what’s happening.
‘The Wrong Side of the Bed’ (MS
Matters, Autumn 2014), was all
too familiar to me, having had a
five-week bed rest stretch last
summer. I agree with Anthony
about trying not to waste a
single day – and that sometimes
it’s harder than it seems. Read
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home
have
your say
do you want to be
on a panel to discuss
MS Matters?
email us.
‘The Wrong Side of the Bed’
article
— Susan Creese, Cornwall
20
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WINTER WOBBLES
BITTEN BY THE TRAVEL BUG
Ann writes: When the clocks went back
Karine writes: My partner Sarah and I
this winter, my body became more off balance
and wobbly; I got tired more quickly. I noticed it’s
the same for some of my friends with MS. Maybe
it’s the cold that affects our bodies, or the lack of
sunshine. Whatever it is, if you call to me in the
street, don’t expect me to turn around, because
if I do, I’ll probably fall over. This is my third winter
since diagnosis. The first was awful, as my legs
weren’t working; I was going up and down the
stairs on my bum.
Last winter wasn’t bad. I’d been on Tysabri
treatment for a few months, and I was mobile
again. I was anxious about a relapse, and I
struggled as soon as it got cold. This year I’m
ready: I know I need to plan rest time around
things. I know to get through the winter I need to
keep my spirits up, keep warm, get more rest and
move my body as much as I can.
decided to take the trip of a lifetime to New York to
celebrate (or commiserate) turning 30.
When we arrived, my scooter was waiting
outside the plane for me and – with some queueskipping – we made it through customs. We
booked a shuttle bus to transfer from the airport to
the hotel, as they have disabled spaces.
We had a lovely time and explored New York
thoroughly. I loved the American Museum of
Natural History and the view from the top of
the Rockerfeller Centre. I also enjoyed scooting
about Central Park in my mobility scooter with the
squirrels!
There are a lot of dips in the pavements to allow
a smooth crossing over the road, but there were
some places where these were non-existent –
Americans are incredibly polite, though, so we had
no shortage of help when it was needed.
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MORE
BLOGS
See all of our
community
blogs.
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Cycling to
beat MS
REAL LIFE
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Aidan Ferguson and his
dedicated friends took on MS by
cycling the length of Ireland –
in just 24 hours.
The Malin to Mizen cycle challenge
is a 630km trek from Ireland’s north,
to its south, and usually takes about
five days by bicycle. But last June,
Aidan Ferguson, Gerry Cleary and
Tony Cummins cycled the route
non-stop, in 24hours. Oh, and
Aidan has MS. What a way to raise
funds for the MS Ireland Donegal
branch, and the MS Society
Fermanagh branch.‘ When I was
diagnosed with MS in September
2009, it was after a few years of
unsettling symptoms, including optic
neurosis, which left me with blurred
vision and, at one point, just 50%
vision in my right eye,’ says Aidan.
‘That first year was hard, and I felt
very bleak and alone. I’d read all the
horror stories, and couldn’t help but
think negatively. ’But Aidan decided
to fight back. He took control of his
diet and got back into fitness. A
chance conversation with his friend,
Tony, took Aidan’s cycling to a whole
new level. ‘I wanted to show others
that it can be done.’ This positive
spirit is clearly what kept Aidan
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going, but there’s no doubting the
relentless hard work to get him in
top condition for the trek. The total
raised now stands at around 19,300
euros [about £16k], with more still
coming in. It’s an impressive
amount, but Aidan says that, while
the fundraising was vital, it wasn’t all
about the money. ‘If one person out
there reads my story, and sees what
can be done with MS, then I’m
happy.’ You can donate to the
challenge
home
Your pedal
power helps
beat MS
Why not sign up
for a sponsored
cycle today.
22
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REAL LIFE
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Leaving a legacy
RAISING MONEY FOR MS
BY READING
KITTY’S LIFE OF
FUNDRAISING
The MS Read-A-Thon is a pilot project for schools
in South and West Cornwall, which aims to
increase awareness of MS and educate children
about the condition, while also encouraging
children to read and fundraise for their local
branches. Organiser Malcolm Glister visits schools
and gives presentations about MS and the ReadA-Thon , at times speaking to up to 800 students.
Children read as much as they can in four weeks,
in class and at home, and collect sponsorship
from family and friends to do so. Jamie Dalimore
is 14 years old and took part in the Read-AThon.
His mum, Lowenna, was diagnosed with RRMS
in 2009. He said ‘I thought it was a good idea
for a very good cause and one that I wanted to
contribute to’
IN 1942 I was ten. It was the middle of the war
when everyone was being urged to make efforts
for war charities. I decided that a jumble sale was
something I could organise myself collected
cast-off clothes and bric-a-brac, raising £4 for the
Red Cross Prisoners of War Fund – that’s 16
parcels to POWs in Germany. I repeated this for
the next three years, raising £25 in total. In that
years that followed I did a sponsored Swim, an MA
at 75 , a sponsored abseil, and a zip wire for MS
Research raising just over £2,500. At 82, I really
felt that my time for such capers was running out,
but I heard about Zip World a mile long and 100
miles an hour, that really sounded like a challenge! I
am closing the fund at £3,150. Now please, folks,
let me retire!
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A BRIGHTER
FUTURE FOR MS
At Christmas we launched the Brighter Future
appeal to raise funds to help support the
Progressive MS Alliance. It’s thanks to the
Alliance that the MS community can have real
hope for a brighter future. We asked people who
gave a donation to write a message of support
and encouragement to our scientists. These
researchers work hard for a future free from the
effects of Progressive MS. We sent as many
messages as we could to them (they were very
touched!),and others we displayed on our
Christmas tree at MS headquarters in London.
We had some truly wonderful and inspiring
messages sent in –thank you! For further
information about the Brighter Future appeal or
the Progressive MS Alliance, call 0800 100 133
or see www.mssociety.org.uk/future.
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TELL US WHAT YOU THINK ON
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mum with MS
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home
What’s it like as a parent with MS?
W
omen with MS commonly start seeing
symptoms develop in their 20s and
30s, which is often the time when many
people think about starting a family - a
life-changing decision. It can become even more
complicated when your life has already changed
in ways you never imagined. Nicola Lay, 32, was
diagnosed with relapsing remitting MS shortly
after the birth of her first child, Jessica. ‘At first,
the doctor put the numbness I was experiencing
in my arm down to a trapped nerve from
lifting my daughter in and out of her cot,’ she
says. ‘But when she was ten months old I
had a major relapse, which meant I couldn’t
use my hands to write, hold things, cut my
food, do up buttons or any day-to-day tasks.’
When her situation didn’t improve, Nicola was
referred to a neurologist who confirmed MS.
‘He suggested I started medication straight
away unless I was looking to have more
25
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MS news
children. My husband and I
had discussed having another
child the following year, so we
decided to put the medication
on hold.’
Family planning
‘Shortly after our conversation,
I had a relapse, which caused
the side of my face to go
numb. At that point we knew
we couldn’t wait any longer;
we started trying for our
second child so that I could
take my medication as soon as
possible.’ During her second
pregnancy Nicola didn’t
experience any MS symptoms,
but she was concerned as
she had heard about the
high chance of a postpartum
relapse. ‘I decided to try to
keep positive as I personally
believe that it can have a great
effect on my MS symptoms.
When I gave birth to Joshua
the following year, I tried not to
focus too much on the fact that
I might relapse – and for me it
didn’t happen, so I’m proof that
not everyone will experience
a postpartum relapse.’ Nicola
started on her new medication
six months after Joshua’s birth,
and it’s allowing her to live
as normal a life as possible.
‘The Facebook group I started
helps; we all support each
another, whether it’s discussing
our symptoms, potty training or
where to get the best holiday
insurance deals!’
Award winner
Check out Nicola’s Facebook
group
which won first prize
at this year’s MS Awards. A
group especially for mums and
mums-to-be, Nicola fundraised
to print and distribute publicity
materials to UK hospitals to
raise awareness of the support
on offer. There are currently
400 members and counting,
and the closed nature of the
group has allowed real
connections to develop.
Members can raise anything
from MS-related worries to a
question about their toddler or
rant about their partner! Nicola
says, ‘MS is a part of our lives
but isn’t our life!’
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Read
more about
MS and
women’s
health
Palliative care
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home
Watch our short
film about MS,
pregnancy and
birth.
26
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LEAVING A
LEGACY
I
N 2014, over a third of our
income came from legacy
gifts. Every year, many of
our supporters choose to
remember the work of the MS
Society in their wills. Anyone
can do it, and gifts can be of
any size. All of them go towards
both improving care and support
for those affected by MS today,
and researching treatment and
potential cures to beat MS
tomorrow. Lorraine Jenkins tells
us why it’s important to her and
husband Davy. ‘In 1986, age
17, I began to suffer with what
I now know to be MS. It took
five years to be diagnosed. For
us it wasn’t a difficult decision
to leave a gift in our Will to the
MS Society. We received a letter
asking if we had ever thought
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REAL LIFE
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Leaving a legacy
about it, which I
thought was a nice way
to be asked without
being forced into it. To
be honest, we hadn’t
thought about it until
that letter came, and
sparked a conversation.
We don’t have children
as sadly were advised
against it at diagnosis. We’ve
received so much help (and will
hopefully continue to do so)
that makes life just that little bit
easier, so we wanted to give
something back. ‘We all know
that an ideal world would be one
without MS, but whilst it’s still
here, the amount of help the MS
Society extends to those who
need it is vital. I feel that if you
benefit from a charity then it’s
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home
important - if you’re able - to
give something back in return;
no matter how small, it all adds
up. I believe that considering a
charity in your will is very much
a personal thing but being
affected by MS myself, I hope
that our legacy will help continue
the fight against this debilitating
condition.’
Read
about
How to leave a gift
in your will to the
MS Society.
27
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MANAGING MS
Research focus
LET’S TALK
ABOUT WEE
One Society
Shana Pezaro reflects
on how her bladder ruled
her life…
Managing MS
I
I’VE EXPERIENCED most
bladder and urinary issues
associated with MS – from
bladder infections, leaking, or
badly needing to wee but then
nothing coming out. It’s been a
living nightmare – my bladder
has ruled my life. I had bladder
infections every few weeks; I
was petrified of car journeys and
I wouldn’t go anywhere unless I
knew exactly where the nearest
toilet was. Sometimes I’d wee,
then 10 minutes later I’d need to
REAL LIFE
Being a mum with MS
Leaving a legacy
go again. I once even wet myself
while I was teaching because I
couldn’t leave my class of fiveyear-olds to run to the toilet. When
I was finally diagnosed with MS,
I was immediately referred to the
continence clinic. The continence
nurses were wonderful – very
reassuring – and said they could
definitely help me. Then they
recommended I learnt intermittent
self-catheterisation… the name
utterly terrified me. And when they
explained what it was, I totally
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freaked out. Catheterise? Stick
something up my urethra into my
bladder? WHAT?!
A urethra moment
However, learning to catheterise
has totally transformed my life.
My bladder wasn’t emptying
properly, hence the constant
infections and frequency of weeing.
Plus my bladder was spasming,
which explained the leaking and
urgency. Using catheters to fully
empty my bladder, and taking
HOME
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medication to stop the spasms,
meant I could finally have control
over my bladder. I had got my life
back. Now, of course I can only talk
about this from a girl’s perspective!
But here are a few details about
my experience… When I first
heard about self-catheterisation, I
assumed there would be something
permanently attached to me. Nope!
I sit on the toilet, put a catheter in,
wee, then throw the catheter away.
Simple.
The practicalities
ABOUT SHANA
Shana has campaigned
on a range of MS
issues. She had been
experiencing symptoms
since childhood, and was
diagnosed with relapsing
remitting MS in 2008.
I spent the first six months attaching
a compact mirror to the toilet rim,
and trying to work out where the
hell to put the catheter in. Now I
can just catheterise automatically.
For months I kept accidentally
shoving catheters into my vagina
and wondering why no wee came
out. I only occasionally do that
now. And usually when I’m a bit
drunk. At the start it was pretty
sore, but now I don’t feel any pain.
I did tend to get bladder infections
when I first started catheterising,
but these days, that only happens
occasionally. Remember, there are
lots of different sizes and makes of
catheter, and my tip is to experiment
with them! Finding the right tube size
for you (the bit that actually goes into
your urethra) is very important. If the
tube is too big, it’s a bit like trying to
force a carrot into a straw. Talk to
your nurse and she’ll point you in the
right direction. When I catheterise, I
breathe out slowly as I withdraw the
catheter, otherwise I tend to clench
around it and it hurts. I rock back
and forth at the end of catheterising
to make sure I have completely
emptied my bladder – sometimes
there’s still wee in there. I thought
using catheters made me unsexy.
The first time a guy I was dating saw
them and asked what they were, I
was mortified, but told him the truth.
His response? ‘Oh, right. Do you
fancy an Indian takeaway tonight?’
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DOWNLOAD OUR BOOKLET MANAGING BLADDER
looks at how the bladder works,
PROBLEMS
and the types of problems that can occur in MS. It
describes a ‘first-line’ treatment route that works
well for the majority of people. It also outlines further
options in case the first-line route doesn’t work.
29
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When words
get in the way
One Society
Anthony Stone reports on palliative
care and hospices.
Managing MS
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i
had not seen my friend
Stephen for a while, so when
he told me he was going to
a hospice for palliative care, I
presumed the worst. On parting,
I was a little taken aback when he
muttered words of reassurance,
and invited me to his birthday in a
few months.
Some words carry a lot of
baggage. ‘Palliative care’ and
‘hospice’ are heavy with people’s
home
– often ill-informed – expectations.
A common misconception is to
confuse palliative care with ‘end of
life’. They are not, necessarily, the
same thing.
‘People often misunderstand
what palliative care is, and don’t
consider it as an option for them,’
says Sally Hughes, Head of
Service Change and Development
at the MS Society. ‘But the current
focus of palliative care is about
improving the quality of life for
people with all sorts of conditions,
and it includes good end-of-life
care when it comes.’
Palliative care is not one thing;
it’s lots of things, hand-picked
for each person. It is also about
matching individual care needs
with the right timing – an important
consideration with MS, with its
variable, wide-ranging symptoms
and unpredictability.
30
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ABOUT ANTHONY
Anthony Stone, 51,
lives in London with his
wife and two children.
He has secondary
progressive MS.
General palliative care for people
with MS can often be met locally
by GPs or by support and input
from a multi-disciplinary team.
It’s usually offered as a shortterm intervention when care
needs have become complex
and need specific attention. Pain
and symptom management, for
example, often benefits people
with MS at points of crisis and
severe relapses. It may be
offered at home or as an outpatient or short-stay patient in
a hospice or hospital.
Pat, 67, is a volunteer counsellor
on the ward at St Nicholas
Hospice Care, Bury St Edmunds,
Suffolk, where she supports
people with a range of illnesses.
Before she began helping out,
Pat received treatment there
as a patient.
The help available was
a revelation and she soon
realised that the support stretched
wide and deep, nurturing her
physically, mentally and spiritually.
‘I retrained, and now I give the
sort of support I know can make a
lasting difference,’ she says.
Northern Ireland update
Having that difficult
conversation
Natasha Fiveash knows all too
well about ensuring the hard
conversations are had. Her
husband Christopher died
in late 2014 after being well
looked after by staff at his
care home, who followed his
wishes through his end of
life plan.
‘They became like family,
who had grown to love him,
Luke and me. Christophers’
letter of wishes took all the
hard decisions away, although
it was hard to follow them! By
following them, it has made it
easier to let him go, because
I know I followed what he
wanted in his heart. I don’t
want people to think they
are sitting on a painful, slow
time bomb. It doesn’t have
to be that way. MS affects
people in different ways, the
same way that people die in
different ways.’
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VIEW FROM THE EDGE
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WHEN CARERS
GET ILL
One Society
As her husband’s carer, our
writer’s life was turned upside
down when she was diagnosed
with a serious illness.
Managing MS
L
IVING IN a family in which
one member is seriously
disabled is a challenge
in itself. What happens
when that person’s principal
unpaid carer falls ill? Just such
a scenario has arisen in our
household. I have recently been
diagnosed with cancer which
is – hopefully – treatable but
which has required major surgery
and will also involve some fairly
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gruelling ongoing treatment
for the next year. So what was
to happen about caring for
my husband during my stay in
hospital? I’d need to recuperate
properly, plan ahead for the times
in the next few months when I
will not be able to care for myself,
let alone anyone else, and –
most critically of all –ensure that
things were as little disrupted
as possible for our teenage
son, who has already had quite
enough to deal with, thank you
very much!
Our heroes
In our case we have been
blessed by an extensive
network of family and friends,
who have always pitched in to
help wherever and whenever
they could. Within days of my
diagnosis, a crisis plan had
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been put together involving a
rota of teams sleeping over a
tour house; a training session t
show volunteers how to use our
tracking hoist and through-floor
lift as well as how best to dress,
wash (and so on) my husband;
a ‘safe house’ for me to go and
stay in to be looked after when
I was discharged from hospital;
an onward plan for the future and
offers flooding in to drive, run
errands and so much more.
Crisis cases
But what happens if, like many
people, you are simply not in
this position? If you live away
or are estranged from family
and haven’t got that sort of a
friendship network? The answer
seems to be that local Social
Services will treat you as a crisis
case, and you will then get
whatever your Local Authority
deems sufficient, or is willing to
pay for. This may be not very
much for not very long. In our
case I suspect that because the
care at home that my husband
needs (and which I give most of
the time) would have cost too
much he would have ended up
in respite care, leaving our son
home alone. Apparently at 16, he
is considered old enough to look
after himself; it’s is a worrying
thought! If he couldn’t look after
himself, or was under 16, he
would have had to go into
short-term care, or to be
fostered, which would have been
hideously upsetting for him when
his world already appears to be
falling apart.
Each local council has it’s
own way of dealing with crisis
cases through social services
depending on where you live.
Your GP or MS nurse are a good
place to start if you are facing
something like this.
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need
to talk
MS HELPLINE
0808 800 8000
helpline@mssociety.
org.uk
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”Being a radio DJ
is good therapy”
One Society
From insurance manager to radio
DJ – how MS opened up an
unexpected door for Keith Bright.
Managing MS
L
istening to Keith
Bright on community
radio station Harbour
FM, you may well conjure
up an image of a man without
a care in the world. Yet the
Norfolk-born DJ was keeping
a secret from his listeners –
for 24 years he has had MS,
something he only revealed live
on air during MS Awareness
Week in April 2014. ‘I hadn’t
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wanted to tell people before
then because I loved just being
me,’ Keith admits. ‘When I’m
doing the show I thoroughly
enjoy it, as I’m not thinking
about my pain; I just love
playing the music.’ The 54-yearold has a 1,000-strong army of
avid listeners, who tune into his
shows, Blast From the Past and
Cornucopia, every week. Keith
plays a range of tunes from
the 1940s through to his wife
Glenys’ favourite rock ’n’ roll;
and he also welcomes guest
speakers, and entertains with
hot topics of debate. Now a
full-time wheelchair user, Keith
was forced to give up his job
as an insurance manager when
his condition progressed. It was
only by chance that he bumped
into the radio station’s Richard
Routledge at his local dance
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group, Original East Coast
Swing and Jive Club – where he
enjoys wheelchair dancing with
Glenys – that the idea of being
on the show started.
A new career
‘Richard invited me to be a
guest on his show, where I’d
choose some music and we’d
have a bit of chat,’ he says.
After just one show – helped by
his support worker and Radio
Producer Dan – he’d landed
himself a job. Having helped
with the family disco business
since he was young, he couldn’t
refuse the offer. Little did he
know it would not only play on
his passion for music, but also
help his MS. ‘Before the show I
used to struggle with my speech
and trip over my tongue a lot,’ he
says. ‘Now my neurologist
believes it’s good occupational
therapy for me to keep talking to
our listeners over the microphone
– and my speech has really
improved.’ Tune into Keith on
Harbour Radio: Mondays and
Fridays, and send him your
song requests
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