April 2015 Recreation Calendar

Th You
Spring/Summer 2013
In advance of National Volunteer Week we want to
thank all our passionate and dedicated volunteers for
their time and talents. Branch officers, committee
members, office administrators, board members,
fundraisers and anyone who gives so freely to support
people with MS, we thank you. Every day the work you
do makes a difference in the lives of people with MS.
Thanks for doing what you do!
In May 2013, Ireland will host European Month of the Brain as part of our EU presidency, and on the 29th
of the month we will mark World MS Day. However, services for over 700,000 people in this country living
with Multiple Sclerosis and other neurological conditions are among the worst in
Help us change this
WOrld MS DaY
MS in the
Dear reader,
This May will be an extra special
(and busy) month for MS Ireland as
we celebrate European Brain Month
and World MS Day. It will be jam
packed with activities, and aims
to bring some serious attention to
those with neurological conditions.
We are calling on all our members,
friends and supporters to help raise
awareness, raise issues or raise funds.
Page 4 outlines seven ways you can
get involved, including sending
the Red Card postcard to your local
representatives (see the back page.)
In November we were delighted to
be chosen as one of five non-profits to
win the Vodafone World of Difference
award. Over 500 people applied to the
scheme, which covers the cost of a
person’s salary to work in a non-profit
for one year. We are thrilled that our
own Emma Rogan was selected as a
winner. Many of you will know Emma
as an active branch member, board
member and passionate advocate
for people with MS like herself. Read
the article on page 9 to see Emma in
we want
to remind
to send
back their
form included
with this
edition of
MSnews. It
contains important information to
ensure we have the correct details for
you and that we communicate with
you in an appropriate manner.
Enjoy reading,
Spring/Summer 2013
Taragh Donohoe
Communications Manager
P.S. We are always looking for
contributions, so do drop me a
line with any interesting stories or
articles you would like to share.
New gene linked to interferon levels
An Irish team has opened up a potentially
valuable new avenue of research into MS, with
its discovery of a gene involved in the regulation
of interferons
Current Affairs
Gene discovery 3
World MS Day
Carers Week 5
Treatment studies 6
Research news 7
MS pathway
NAI strategy 9
MS Care Centre 12
Pregnancy 13
MS in the media 18
IRISH SCIENTISTS HAVE found another piece of the
MS jigsaw. A 10-person team at National University of
Ireland (NUI) Maynooth has discovered a gene linked
to the development of MS and other auto-immune
It found that the Pellino 3 gene may have a role to play
in the regulation of interferons, making the discovery
particularly interesting to those with MS.
Interferons are a group of natural proteins released by
the body to help fend off viruses. Auto-immune diseases
can develop when the body releases too few or too many
Too few interferons can trigger MS, so some people are
prescribed Interferon-beta to help suppress the disease.
Pellino 3’s ability to regulate the release of
interferons means that scientists now have a starting
point for the treatment of MS, according to Professor
Paul Moynagh, lead investigator and director of
the Institute of
Immunology at NUI
Professor Pau
l Moynagh, dire
While his team
ctor of
the Institute of
concentrates on
at NUI
immunology, it
has had an interest in MS for some time.
“Pellino 3 has to be very tightly controlled, so what
we’d like to do now is look at the levels of the protein
produced by Pellino 3 and see how it is produced in MS
patients,” said Prof Moynagh.
“We’d also like to use the models of MS to examine
the role of Pellino 3 in the process that leads to the
The Maynooth team’s findings were published in the
well-known journal Nature Immunology in October,
and have received interest from international quarters.
Walks and treks 24
Dates for your diary 24
Society appoints new
medical advisor
Professor Michael Hutchinson looks
forward to exciting times ahead in
his new role with MS Ireland
My husband uses a powered
wheelchair and we are
looking to buy an automatic
Renault Kangoo or similar.
We would love to get out
more. If you are selling
your car, call Norah on
087 977 0128.
Disclaimer: �MSnews’ is the magazine of
MS Ireland. It exists to foster informed debate
and comment about all issues relating to MS.
The view of contributors
are not necessarily those of the Society.
No treatments or therapies should be
attempted or products used without
qualified medical or professional advice.
MultipleSclerosisIreland, 80 Northumberland Rd,
Dublin 4.
www.ms-society.ie | 01 678 1600
[email protected] | Info Line: 1850 233233
EDITOR Taragh Donohoe,
[email protected]
[email protected]
ADVERTISING Taragh Donohoe,
Tel: 01 6781610
MS Information Line: 1850 233 233
Prof Michael
neurologist and long-time friend
of MS Ireland Professor Michael
Hutchinson has taken up the
role of medical advisor to the
Prof Hutchinson will work
on research funding and
advocacy, research translation,
and improving the medical
information MS Ireland offers.
A consultant neurologist at St Vincent’s University
Hospital, and Newman Clinical Research Professor at
University College Dublin, Prof Hutchinson has had a
career-long interest in MS.
Despite semi-retiring last year, he continues to work two
and a half days each week as consultant neurologist at St
Vincent’s. His interest in MS has not abated.
“MS is very exciting at the minute. Lots of new drugs and
effective therapies are becoming available.”
Alongside Christian Confavreux, Prof Hutchinson instigated
and organised the pivotal Pregnancy in Multiple Sclerosis
(PRIMS) study in Europe in 1998.
“The days when you saw young people suffer greatly are
gone. Research into MS is becoming more interesting as time
goes on because you can do so much more now for people
with MS. I’d like to take part in that,” he said.
“I’m delighted to become MS Ireland’s medical advisor.
I have long been a supporter of MS Ireland’s work and
am pleased to help in any way I can. I hope with my new
role I can report on many more new advancements and
developments in the care and treatments available.”
Support Your Local MS Community
This World MS Day
World MS Day takes place on Wednesday 29th of May and is a day for all people with Multiple Sclerosis around the
world to unite. This year the focus is on young people with MS and we are asking YOU to help us raise awareness,
raise the issues and raise funds! We need your help to spread the word, create your motto, fundraise and advocate for
better neurological services. Take action today and support your local MS community!
I have MS,
MS doesn’t have
Spread The W
Tell as many
people as
about World
MS Day.
Send emails,
orks, put
al media netw
use your soci
’s webyour company
for us.
some posters
site or put up
e and create!
Forward, shar
Share your m
with the world
People with M
across the wor
are being aske
d to add their
motto to the W
orld MS Day
website to sh
ow what words
strength give
them hope. A
your motto an
d encourage
others on thei
r journey.
Organise a tea party in
your home , community or
workplace in May or June.
Money raised locally will be spent
Sign up for a Fundraising Pack Today!
Text World followed by
your first name to 51000
Send your TD a Red Card for Neurology
Neurology and neurorehabilitation
services in Ireland are the worst in
Europe (see some of the statistics on
page 9) Cut out the postcard at the back
of this magazine and send it to one of
your local TDs or senators. You can also
send it via our website.
Organise your own
event or activity
If you want to run an
event yourself we would
be delighted to help. We
can send out information
booklets, services brochures and promotional
materials like posters and balloons. We
can also send out boxes of pins if you want
to put a box in your office or workplace.
Attend a local
event or
All over the country our Regional
Offices and voluntary Branches
are organising local events to
inform, support or raise money
for local services.
Get your hands
on The Script
Get involved in our
Celeb Auction and
walk away with The
Script, Def Leppard, Imelda May,
Brian O’Driscoll, Noel Gallagher,
Damien Dempsey or Katie Taylor.
Get bidding today!
This is an extra special World MS Day as it
takes place during the European Month of the
Brain. Across Europe many countries will be
focusing their attention on neurological conditions and how services and awareness can be
improved. In Ireland many events are already
planned, including wellness days, a national seminar organised by
The Neurological Alliance of Ireland, two key-note conferences and a
range of information, advocacy and public relations activities. Check
out our website for more details.
For more information:
W: www.ms-society.ie E: [email protected]
T: 01 678 1600
MS Information Line: 1850 233 233
Mobility schemes axed
The mobility allowance and
motorised transport grant have
been scrapped, as the Department of
Health finds them unlawful
THE LOSS OF the mobility allowance and motorised
transport grant could diminish the quality of life of
recipients, according to Ava Battles, Chief Executive,
MS Ireland.
In February, the Department of Health announced that the
mobility allowance and the motorised transport grant would
no longer be available to people with disabilities. It found that,
under the Equal Status Act, the payments were unlawful.
It has set up a project group, which is reviewing the schemes,
and will consider alternative solutions to address the transport
needs of those with disabilities.
The department says it will look at other ways to deploy the
€10.6 million currently ring-fenced for the existing allowance
and grant.
The group, which is independently chaired and includes
representatives of people with disabilities, will report
to the Government before the end of May.
The Mobility Allowance, which is due to cease in June, is a
means-tested payment of €206 a month. It assists a person
with disabilities with various transport needs such as taxis
to hospital appointments, community activities etc.
“The service is particularly important in areas without
good public transport,” said Ms Battles.
It has proved vital for some people with MS, who have
relied on the payments and spent their other income
to buy food, fuel and essential medical supplies, said
Ms Battles.
Another means-tested payment, the Motorised Transport
Grant is given to assist people with disabilities to purchase a
second-hand car, thus helping them to continue to take part
in community life.
Ms Battles said both payments enable people with
disabilities to take a more active role in their family life,
work life and local community.
“Taking away people’s right to social participation
diminishes their quality of life and ability to contribute to
society. For the few hundred people with MS we estimate
are in receipt of these payments, we know many will suffer
if an alternative, appropriate scheme is not introduced
soon,” she added.
MS Ireland has been working with the Disability
Federation of Ireland to ensure that the payment is
redeployed as quickly as possible.
With National Carers Week fast approaching,
MS Ireland is urging everyone to support local
events and help celebrate the work of family carers
NATIONAL CARERS WEEK takes place from 10 to 16 June
this year, and MS Ireland is calling on all members to get
Aimed at celebrating and promoting family carers, the
week will see events and activities take place around the
country. Family carers make a huge contribution to our
society, but many are not recognised for the great work they
do. National Carers Week sets out to remedy this.
Olga Estridge, Services Manager with MS Ireland, says the
Society is delighted to be involved.
“There’s a large number of people with MS who rely
on the support and care of their family members. We
believe that highlighting the challenges and experience
of carers is very
Weather presenter Nuala Carey
To mark National
launches Carers Week
Carers Week, MS
with the aid of some helpers.
This year it takes place from 10
Ireland will launch
to 16 June
an online toolkit for
carers on its website.
It provides information on practical aspects of caring,
covering topics such as skin care, cognition, bowel
spasticity and nutrition, as well as emotional aspects
such as coming to terms with being a carer.
Check out www.ms-society.ie for details of the events
taking place during National Carers Week.
up on MS
Teams at University of Limerick (UL)
have been investigating new ways of
alleviating some of the symptoms of MS
BLADDER DYSFUNCTION AFFECTS approximately three out
of every four people with MS. Yet, research has found that
people with the disease appear reluctant to seek treatment for
The problem can affect people’s confidence, as it impacts on
social participation, activity levels and sexual activity. But there
are ways to manage it, and self-management in particular will
boost social participation and quality of life.
Led by Catherine Browne and supervised by Dr Maria Garrett,
the research being conducted at UL aims to identify the specific
factors of bladder dysfunction that contribute to the reduced
quality of life in people with MS.
It is also looking to identify best practice in assessing and
managing the symptoms.
The first phase of the project, which involved interviews
with people with MS, has been completed. The team found
a knowledge gap in terms of the type of self-management
strategies employed by participants, as well as their
understanding of bladder dysfunction and reporting symptoms
to health professionals.
According to the researchers, these results suggest there may
be a role for health professionals in providing education specific
to bladder dysfunction to people with MS.
The next phase of the project, which will get under way
shortly, will include a focus group made up of health
professionals in order to get their views on the topic. This will be
used to inform a national survey, which will help identify best
practice in managing bladder dysfunction.
Sensory Problems
A second project at UL is looking at the importance of sensation
in rehabilitation strategies for people with MS.
Marcin Uszynski, a PhD student under the supervision of Dr
Susan Coote, says studies show that sensory abnormalities are
common in those with the disease.
“There are different reasons people with MS suffer loss of
sensation. Abnormal feelings usually take the form of numbness
or tingling, often in the arms and legs,” he says.
Some people
also experience a
loss of sensation
or an inability to
feel temperature.
It is important to
have good tests to
detect and treat
these problems, but there is currently no gold standard tool
to assess sensation in the MS population.
“One of our research projects investigated four tests which
may help to detect changes in sensation. Preliminary results
suggest that a Neurothesiometer, which detects vibration
threshold, and a Verbal Analogue Scale, which determines a
patient’s feeling of sensation, seem to be the most reliable,” says
Mr Uszynski.
A new treatment, which uses a Whole Body Vibration (WBV)
platform, has been put forward as having the potential to
strengthen muscles and treat sensation problems in people with
MS. Anecdotally, patients give positive feedback, reporting a
higher level of energy afterwards, and noting that their feet feel
warmer and more sensitive.
“Results from our pilot study confirmed it is a safe treatment
with no adverse effects. It has the potential to be performed
independently of a therapist once a person is instructed, but we
need more research into its effect.”
Are you interested in taking
part in research studies?
If so, the MS research team at UL is putting together a
database of people with MS who would like to be informed
of what studies are being conducted through the university.
The studies will look at rehabilitation, exercise and other
aspects of living with MS, rather than clinical trials of drug
If you would like more information or for your details to
be added to the database, please contact Dr Susan Coote
([email protected]; 061 234278) or Dr Maria Garrett (maria.
[email protected]) and they will send you a letter with further
details and a contact form.
By signing up to the database you are not committing
to taking part in future studies, rather you will be kept
informed and can choose whether to take part later on.
Researchers often approach MS Ireland to help recruit
people with MS for various studies. At the moment we
are looking for people interested in studies on
mindfulness and decisions on medications. For more
information log onto our website.
MS Information Line: 1850 233 233
Green light for Tecfidera
Decision means oral first-line
therapy could be available
here by late 2014
TECFIDERA, A NEW oral therapy for MS
previously known as BG-12, has received
approval in Europe and the US.
This could see the drug available in
Ireland within 18 months.
The European Medicines Agency (EMA)
and the Food and Drug Administration (FDA) in the US
gave the therapy positive opinions in March.
On 21 March, the EMA’s Committee for Medicinal
Products for Human Use (CHMP) recommended the
granting of a marketing authorisation for Tecfidera
120mg and 240mg capsules for adults with relapsing-remitting MS.
The recommendation has been referred to the
European Commission, with a decision expected this
On 27 March, the FDA approved
Tecfidera as a first-line therapy for
those with relapsing-remitting MS.
The drug, which is manufactured
by Biogen Idec, is believed to reduce
inflammation and protect the nerves.
It is taken in tablet form two or three
times a day. Studies have shown relapse
rates drop by 48% for the twice daily
dose and by 53% for the three times
daily dose. Disability progression also
fell by 38% for those who took Tecfidera twice a day and
by 34% for those who took it three times a day.
Common side effects include gastrointestinal upset
such as diarrhoea, nausea and abdominal pain, and
This is an exciting development in MS, as Tecfidera
could be the first oral therapy available as a first-line
treatment. Currently, all first-line treatments are
PPMS impedes cognition
more than RRMS
Research into the cognitive abilities of
people with MS finds that those with PPMS
fare particularly poorly
A NEW STUDY from France has compared the cognitive abilities
of people with primary progressive MS (PPMS) and relapsing-remitting MS (RRMS) with those of healthy controls.
The study took 41 people with PPMS, 60 with RRMS and 415
controls. Participants then took part in neuropsychological tests
including the Stroop test, a numerical span test, and computerised
tests as part of the Test of Attentional Performance (used since the
late 1990s to analyse different aspects of attention in adults with
medical and neurological conditions).
The study found that people with PPMS performed worse than
controls on nearly all neuropsychological tests, while those with
RRMS performed worse than the controls on just some of the tests.
It concluded that people with PPMS had poorer cognitive ability
than those with RRMS.
No evidence for CCSVI link
A new study has found no
basis for claims of a role for
A STUDY PUBLISHED in the journal Annals
of Neurology in March found no association
between chronic cerebrospinal venous
insufficiency (CCSVI) and MS.
This was one of seven studies funded by
the US and Canadian MS societies, and was
initiated after CCSVI received much media
coverage over the past few years.
It found no increase in the prevalence of
CCSVI among people with MS.
Researchers from the University of Texas
Health Science Centre in Houston measured
blood outflow from the brain.
Some 276 people were assessed for CCSVI,
206 of whom had MS. CCSVI was present in
3.88% of people with MS and 7.14% of those
without MS.
Finding a pathway
A new initiative hopes to put a plan in place for how the care of MS
should proceed from diagnosis onwards, thereby demystifying the
process for patients
PEOPLE WITH MS could soon have a care pathway in
place to help co-ordinate their care from diagnosis
through to treatment and services.
In 2012 MS Ireland ran a campaign to highlight and
rectify the issue of certain treatments not being available
to people with MS. Working with other organisations, we
were successful in getting Gilenya reimbursed by the
HSE. Access to Tysabri is still an issue.
One of the consequences of the work we did on the
access campaign was an invitation to a meeting with the
then director of the Quality and Clinical Care Directorate
for the HSE, Dr Barry White, and key members of his
staff, as well as the Neurology Clinical Programme
In 2010, the HSE set up a Quality and Clinical Care
Directorate to help improve patient care throughout
the health system. At the time, 20 clinical programmes
were established, with a clinician appointed to lead
each one.
Among the 20 areas covered in the directorate were
primary care, heart failure, diabetes, epilepsy, stroke
and neurology outpatients.
The neurology clinical programme is led by Professor
Tim Lynch, Consultant Neurologist in the Mater Hospital.
The aim of this group is to confirm baseline versus
nationally agreed outpatient targets, to establish ways
to measure performance and to put in place clinical
process and practice changes.
A working group of the neurology programme has now
been set up to focus on MS. We are delighted that MS is
the first neurological condition to be looked at under the
The working group is being headed by Drs Niall
Tubridy and Chris McGuigan, Neurologists with St
Vincent’s Hospital. The group also has a wide range of
disciplines represented including MS specialist nursing,
physiotherapy, ophthalmology, occupational therapy and
others. Aidan Larkin, National Services Development
Manager with MS Ireland, is also a member.
The first piece of work for the group is establishing an
MS care pathway.
“We’re trying to set up some sort of standard practice,
so that a person presenting with the symptoms of MS
might know a typical time frame for expecting such
things as an MRI scan or being called back for diagnosis.
We’re also looking at the most appropriate pathway of
care throughout the life of the condition so that clinicians
have some framework out of which to operate,” says
At present, a person with MS may not know what to
expect of any healthcare professional from the time
they notice symptoms and contact a GP right up to being
diagnosed with MS and beyond.
“It’s a work in progress but the idea is that we will
come up with an agreed pathway, which will feed into the
neurology group.”
The Clinical Care Directorates are key agents of
change in the HSE. The stroke and epilepsy directorates
have had huge successes in changing practice and care
for the benefit of those with stroke and epilepsy.
MS Ireland believes that similar improvements can be
made in MS and neurology in general so we are focusing
much of our advocacy work in this area.
One of our key concerns is that discussions and
changes in care and services do not focus solely on
hospital-based services.
“One of the key challenges is linking up the services
and care in the hospital with those in the community.
As it is a lifelong condition, most people are tapping
into services in their local areas. It is vital that both
community and acute services link up and improve in
tandem,” says Aidan.
MS Ireland would like to hear your views on changes to the delivery of hospital and community-based services.
Over the coming months we will be involving people with MS in a series of consultations and questionnaires.
Check out our website for more details.
MS Information Line: 1850 233 233
ON 25 FEBRUARY, MS Ireland helped launch the
Neurological Alliance of Ireland’s (NAI)
neurorehabilitation manifesto. The manifesto calls for the
Government to implement the 2011 neurorehabilitation
strategy and protect funding to non-profits.
An NAI survey painted a grim picture of current neurorehabilitation services. It revealed that 71% of people with a
neurological condition couldn’t access any neuropsychology
services at all, whilst 68% said
physiotherapy and speech and language therapy were
either inadequate or not available.
Person with MS Alexis Donnelly spoke at the event. Alexis
contributed to the original strategy and is dismayed that
action has not been taken.
“I feel my continued existence is threatened if we do
not invest now. If I deteriorate I will be in hospital more,
and both I and my wife would have to quit our jobs as she
would have to care for me. Neurorehabilitation has long
been the Cinderella of the healthcare system. It’s about time
Cinderella went to the ball.”
Other findings from the survey include:
• 80% couldn’t access adequate residential or day
• 78% could not get proper counselling services
• 76% couldn’t access adequate occupational
therapy services
On 27 February MS Ireland joined NAI for its Lobby Day
in Leinster House. The aims were to educate our elected
representatives on the dire state of neurological services,
show the positive impact non-profits are making and ask
them to prioritise people with neurological conditions.
Person with MS Emma Rogan spoke of her experience
of living with a neurological condition. She was joined by
Professor Orla Hardiman, Consultant Neurologist, and Chris
Macey, Chair of NAI.
“The bottom fell out of my world when the doctor and
nurses gathered around my bed and told me I had MS,”
said Ms Rogan. “Dazed and confused, I was on autopilot
for a while. I then made contact with an MS volunteer at
home in Mullingar and they put me in touch with Mary
Improvements in neurological
care and neurorehabilitation
services are top of MS Ireland’s
advocacy agenda this year
Below: Emma Rogan
highlights the fact that over
5,000 people with
neurological conditions wait
more than a year to see a
n with MS
Above:  Perso
lly launches th
Alexis Donne
Chris Macey
with NAI C
who works with MS Ireland. She has listened, advised,
encouraged, cautioned and been a tower of strength
for me over the years. More government cuts take the
Marys of this world away from those in most need.”
In advance of the briefing we asked members to email
their TDs with information and invites to the event.
Thanks to everyone in MS Ireland who did this. To find
out which TDs attended, log on to www.nai.ie.
Shocking facts about our neurological services
• 38% of patients, more than 5,580 people, are
waiting more than a year to see a neurologist
• Over 1,000 patients are waiting more than four
years for a hospital outpatient appointment
• Ireland has seven rehabilitation consultants; if we
had 50 we’d still have the second lowest per capita
rate in Europe. If we had 150, we’d have fewer per
capita than Serbia, the Czech Republic, Estonia,
Latvia or Croatia.
Check the back page for a postcard
you can send to local representatives
to ask them to support the calls for
improvements. You can also email
your TDs from our website:
MS Ireland and the MS Northwest Therapy Centre in Sligo are
strengthening their relationship
OVER THE PAST year, representatives from MS Ireland and the
MS Northwest Therapy Centre in Sligo have met with a view
to reinforcing links between the
organisations. For example, they have discussed activities
and fundraising events they could run together.
“We have had a number of meetings with the MS
Northwest Therapy Centre and have agreed to work more
closely together,” said Olga Estridge, Services Manager, MS
The MS Northwest Therapy Centre has become a valuable
resource for people with MS in the west of Ireland over the
past 20 years.
It provides a number of services, including
physiotherapy, counselling, holistic therapies, hyperbaric
oxygen therapy and foot care.
“It is a wonderful facility, which offers a very practical
response to people on the western seaboard. There’s no
doubt that MS Ireland members use the centre, so there’s
a link there. We hope to work closer with the centre going
forward,” said Ms Estridge.
Calling all service users
National database’s usefulness will
depend on people coming forward
with details
MS IRELAND IS calling on people with MS to sign
up to the National Physical and Sensory Disability
Database (NPSDD).
Set up in 2002, the NPSDD is a planning tool for the
Health Research Board (HRB), which measures the
needs of people with physical or sensory disabilities,
including those with MS.
The tool profiles people who are receiving or
waiting for specialised health and personal social
services, the type of service they are waiting for,
and when in the next five years they may need those
Katie Hourigan, Regional Co-ordinator for MS
Ireland’s South East region, says: “the better we
understand the needs of those with MS the better we
are able to address their needs”.
In a press release issued by the Department of
Health in May 2011 the Minister for Health, Dr James
Reilly, stated that “Every health policy developed
during the time that I am in office is going to be based
on knowledge derived from research”.
It is research, therefore, that determines how much
is spent and where.
In much the same way in which the census helps
us plan for schools and local amenities, the NPSDD
database helps us plan health-related services.
Once the Health Service Executive (HSE) can
quantify needs and identify gaps, it can then plan
services appropriately.
In some areas the HSE is already using information
from the database to allocate funding and resources;
for example if physiotherapy is identified as a key
in a certain area, resources can be allocated
We encourage everyone with MS to get their details
added. This involves a 15-minute phone interview
based on a standard set of questions.
To be included on the database contact your
MS Ireland regional community worker or your HSE
Public Health Nurse.
MS Information Line: 1850 233 233
Rehabilitation conference to see
international experts discuss
exercise participation and mobility
UL to host conference
on mobility in MS
INTERNATIONAL EXPERTS ON physical activity in MS are set
to descend on Ireland next month as Rehabilitation in MS
(RIMS), the European network for best practice and research
in MS rehabilitation, hosts a conference here.
The two-day event, which takes place on Friday and
Saturday, 7 and 8 June, will cover a range of topics as it looks
at changes in mobility and exercise participation.
Areas to be discussed include exercise, education and the
psychology viewpoint on exercise and physical activity for
people with MS.
Rehabilitation physicians, physiotherapists, sports
scientists, MS clinicians and researchers will attend. The event
aims to share the latest knowledge and information around
physical activity in MS so that the participants can build on
the research to date.
RIMS is hosting the event, at University of Limerick (UL),
alongside SIG Mobility and Education. This is the first time a
RIMS meeting has taken place in Ireland. Dr Susan Coote,
Board Member of MS Ireland and lecturer in physiotherapy at
UL, is the local organiser.
“We hope to have a range of speakers from across
Europe presenting the latest research,” she said. “We hope
everyone in attendance will use this information to develop
interventions based on the latest evidence.”
She added that the event was very timely for the research
team at UL as it works on the next stage of Getting the
Balance Right, MS Ireland’s national
physiotherapy and exercise programme.
The event is open to all health professionals working in MS
rehabilitation. We will be interviewing many of the speakers
and making available as much reader-friendly information
as possible. Check out our website or the next edition of
Msnews for more.
Kindly sponsored by Biogen Idec
MS Ireland National Awards
It’s that time again when MS Ireland prepares to honour
those who make a real difference
EVERY YEAR, MS Ireland honours people associated with
MS through its National Awards.
From those who care for loved ones or neighbours, to those
who selflessly volunteer their time, to people with MS who
inspire us each and every day, the awards have gone to an
eclectic bunch of worthy recipients over
the years.
They are the Society’s way of recognising the contribution
many of its members make within their families, local
communities and MS Ireland itself.
The nominations for this year’s awards are now open.
Branches, individual members and staff can nominate those
they feel deserve recognition.
There are awards in the following three categories:
• MS Person of the Year
• MS Carer/Helper of the Year
• MS Volunteer of the Year
Full details and nomination forms are available on the
website or by contacting Alice McKeon on 01 678 1600. We
recommend that you return your nomination forms to the
National Office now. The closing date for receipt of forms is
Friday, 28 June 2013.
The 2013 awards will be presented at the national
conference and AGM in September.
Cover Story
For a person with MS, the prospect of having a child – from conception
right through to the early months as a parent – can seem daunting.
But the evidence points to it being a very positive experience for most
Home away from home
Each year hundreds of families benefit from
the wonderful services at the MS Care Centre.
But how does the application process to the MS
Care Centre work, and how can you avail of the
invaluable services it provides.
EACH WEEK THE MS Care Centre caters for 12 residents.
Ireland’s only dedicated respite and therapy centre for
people with MS provides a number of social and therapeutic
activities. From yoga and massage to
physiotherapy, nursing assessments and evening
entertainment, visitors to the care centre can mix pleasure
with support services.
In the leafy suburbs of Rathgar in Dublin, the MS Care
Centre is open to people from all over Ireland.
Niamh Sweeney, Support Services Manager at the centre,
says you don’t have to be a member of MS Ireland to stay
“There is a waiting list, the length of which can vary at
different times of the year. People can come in for five,
seven or 12-day breaks,” she says.
People can be referred to the centre through their
Regional Community Worker, GP, public health nurse or
any health professional.
“They can also self-refer or be referred by a relative,”
adds Niamh.
All potential residents need to complete an application
form, which includes their contact details, information
about their MS and their preferred dates to stay.
All applications are assessed by Niamh and one of the
Clinical Nursing Managers. Niamh looks at administrative
issues such as dates and the persons insurance status
- private healthcare, medical card holders or other. The
Clinical Nursing Manager looks at the clients potential care
“It is vital that we know the level of care needed by
a client. We can cater for up to seven high care needs
residents a week so we ensure that the needs of the person
can be met appropriately by staff,” she says.
Some potential residents may not be accepted if their
dates don’t suit, too many high care needs clients are
booked in already, or the person is just too unwell at
the time.
“To the best of our ability we try to provide equal
opportunity of access to our services. However, residents
In the family way
will be prioritised based on their social and family
circumstances and on their needs,” says Niamh.
If possible, requested dates will be catered for, but if
they’re not available alternative dates will be put forward,
or applicants will be placed on a waiting list.
If dates are suitable and the person’s needs can be
met, a confirmation letter is sent to potential residents to
confirm their stay.
A week before the person is due to come to the centre
one of the nurses will make contact by telephone. They will
talk through the person’s needs in relation to medications,
nutrition, equipment or any other requirements. This
information helps the team to create a care plan for all
On the day of arrival, the nursing and care staff meet with
each resident to run through any requirements again and
arrange appointments with the centre’s various therapists.
They will also talk to the resident about any events they
can take part in during the week or additional therapies
they may want to book.
A voluntary donation of €20 per day is asked of each
resident to help cover costs caused by reductions in
fundraising and cuts in state funding.
MAKING THE DECISION to have a baby is a huge one for
any woman or couple, but for people with MS there are
more considerations involved than for the average person.
Years ago, women with MS were advised not to become
pregnant, as it was believed that pregnancy would worsen
the disease.
However, in 1998 an international study, the PRIMS
study (Rate of Pregnancy-Related Relapse in Multiple
Sclerosis), offered a new view.
Professor Michael Hutchinson, Consultant Neurologist
and Medical Advisor for MS Ireland, worked with a number
of European neurologists and researchers to carry out the
study, funding for which came from MS Ireland.
“I felt this was an area that wasn’t properly understood,”
he says.
PRIMS studied 254 women with MS in 12 European
countries throughout their pregnancies and for up to
12 months after delivery. The aim was to determine the
rate of relapse per trimester. That rate of relapse was
compared with the relapse rate during the year before
the pregnancy. It also analysed the effects of epidural and
breastfeeding on the relapse rate.
Prof Hutchinson says that if you take pregnancy and the
three-month postpartum period, the overall experience is
disease neutral.
The study found that, during the pregnancy, disease
activity reduces, particularly in the last trimester. In the
few months after birth, relapse rate increased and one in
four women experienced a relapse of varying degrees of
severity. Relapse rate returned to normal soon after.
The PRIMS study is still the most comprehensive
research in this area and smaller studies have backed up
the findings.
Getting pregnant
Contact the MS Care Centre today:
The MS Care Centre, 65 Bushy Park Road,
Rathgar, Dublin 6, Ireland
[email protected]
01 490 6234
MS Information Line: 1850 233 233
Prof Hutchinson says people with MS should be very
energetic and “feel well” in order to embark on a
pregnancy. Very often those who get pregnant have mild
symptoms of the disease.
The advice for women with MS who are on any diseasemodifying drug therapy is to come off the drug at least
a month, but preferably two or three months, before
conception, according to Prof Hutchinson.
“If they’re planning a pregnancy, they should start taking
folic acid as with all potential pregnancies,” he adds.
Women on Tysabri are advised to stop taking the
medication three months before conceiving.
Relapses during pregnancy are rare, as the hormonal
effect on MS tends to reduce activity, but they do happen. If
someone has a relapse during pregnancy they can be put
on steroids.
Prof Hutchinson says that the majority of women
who do relapse during term go on to Tysabri straight
after delivery.
Any woman looking to get pregnant should talk to their
neurologist, who will follow up with them throughout their
Midwife Doreen Buckley suggests that all women,
including those with MS, attend a course during pregnancy
to prepare them for going home with the baby.
“While the recommendation is always to get lots of sleep
when the baby is born, pregnant women also need to be
rested when coming in to have the baby,” she says.
“When people have MS in pregnancy they are often
known to get remission from the symptoms but they’ll
still be fatigued just by the fact that they’re 30-plus weeks
“I suggest old-fashioned things such as having a bath
and using lavender oil, and slowing down at night by
listening to their favourite, relaxing CDs.”
Recommendations from Ms Buckley include avoiding the
use of mobiles in the bedroom, and no television within 30
minutes of bedtime.
“By watching television right up until we sleep or
checking our phones after the lights are out, we’re not allowing
our body to slow down. We’re not getting into restorative sleep
so we will wake up fatigued.”
She suggests going to bed at the same time every night and
getting up at the same time every morning.
Labour is often long and exhausting, especially for first-time
mothers. For women with MS, the fear that it can cause fatigue
is not unjustified. In some circumstances fatigue can affect the
second stage of labour and prevent pushing.
However, there’s no association between the length of labour
and relapse, according to Prof Hutchinson. Just because you
have MS doesn’t mean you have to have a Caesarean section.
Caesarean sections will be suggested for those women who
experience lower limb weakness or spasticity and so may find it
difficult to push or squat during labour.
Any birth plan should be discussed with the midwife and
obstetric physiotherapist during the pregnancy.
Likewise, there is no evidence that women with MS can’t take
pain relief medication during labour, including entonox (gas),
pethidine and epidural. In some cases, the TENS machine can
exacerbate lower limb spasms.
Men with MS
The issue of having a child is not one confined to women
with MS. Sometimes men with MS worry about conceiving
and being able to look after their children when they
Male fertility doesn’t appear to be affected by MS but
some men do experience issues around ejaculatory
dysfunction and impotence.
These problems can be remedied, however, by
medication for erectile dysfunction, electronic ejaculatory
stimulation or artificial insemination.
No studies have been published to show the effect
of disease-modifying therapies on fertility or foetal
development when it is the father taking the medication.
Men should talk to their GP and neurologist before trying
to conceive. One option could be to freeze your sperm
before starting treatment.
If you experience fatigue, and will find it difficult to be
there throughout the entire labour, you should arrange for
a family member to take over while you rest.
For men with physical disabilities, the inability to play
with their child or teach them practical things like cycling a
bike may deter them from having children, but remember
there are many other things you can teach your child, and
you can show them all the love in the world.
Discuss any fears you may have with your partner.
Relapse after birth
Studies have shown that one in four women relapse during the
first three months after having a baby, with the risk of relapse
during the postpartum period estimated to be between 20 and
There is no way to predict who will experience a relapse or
how severe it will be.
The first few months of having a baby are naturally exhausting
but for women who experience a relapse the difficulties are
Be extra vigilant about spotting MS symptoms and contact
your neurologist immediately. Fast and immediate treatment
can help minimise the impact.
Speak to family before the birth and prepare them to offer
extra help if you do relapse.
Emotionally, a relapse can be difficult as mothers often feel
guilty about not being able to tend to their child’s every need.
They may be reluctant to accept help or admit that they are
having difficulties.
However, by caring for yourself you will be better able to care
for your child in the long run. If family can help with the more
practical duties, you can focus on bonding with your child.
Ms Buckley says it’s common for women to become
overwhelmed when breastfeeding on the first night home
from hospital.
If you suffer sore or cracked nipples, see a lactation
consultant as soon as the early warning signs appear,
she says.
While getting sleep can be a difficult task for new mothers,
sleep is important in order to produce good-quality milk.
“Keep visitors away and ask family and partners to look
after the baby while you get some sleep in a different room,”
she says.
For first-time mothers, having a baby can be daunting, and
the added stress of dealing with the threat of an MS relapse
It’s important to remember that relapses aren’t a given
and studies have shown that pregnancy shouldn’t affect
the course of your disease. Having a baby can be a positive,
life-changing experience. Be prepared and informed, and
enjoy the ride.
I WAS DIAGNOSED with MS in 2010 after having what I
now know to be fairly frequent relapses. I would have
never considered myself very maternal but when I
found out about the MS, it was one of the first things
I thought about. I started treatment and stayed on
it for about six months before coming off to try and
conceive. I stopped my treatment in November 2010
and I found I was pregnant in February 2011.
Until the fourth month I had pretty bad morning
sickness and was exhausted, as most women are.
Overall I had a really good pregnancy; not having to
inject every day and being able to blame the fatigue
on pregnancy was great. My energy levels felt higher
than they had in a long time.
I’m lucky to have fantastic support from my family.
I opted not to breastfeed. For me it meant I could let
other people help out with feeds when I was too tired,
and I started back on my treatment after four weeks.
My last MRI scan showed some positive results... a
combination of pregnancy and my treatment!
A number of publications have reported that exclusive
breastfeeding reduces the relapse rate in this period.
“If you do decide to breastfeed you should be fairly well
and have a milder form of MS.
“It is an exhausting time for the mother but it can
produce lots of prolactin, a hormone in the blood stream
which can have a positive effect on the central nervous
system,” said Prof Hutchinson.
Ms Buckley says it’s important that women are trained
properly in breastfeeding
“Breastfeeding presents a number of benefits including
losing body fat and immunity against illness but
breastfeeding exclusively can be very difficult for any of us,”
she says.
She suggests visiting your local breastfeeding support
group before having the baby.
“It’s a great idea to get yourself down there and meet
other women doing the same thing.”
New mothers must be able to distinguish whether the
baby is looking for food or comfort, says Ms Buckley.
They must also eat healthily to keep up their energy and
ensure the right nutrients are being produced, she adds.
“Eat plenty of fruit and veg, and protein at two meals a
day. Eat at three to four-hour intervals and no dieting or
she adds.
MS Information Line: 1850 233 233
A man’s perspective
WHEN I WAS diagnosed with MS I was very concerned, as I
thought for some reason that having MS meant I wouldn’t
be able to have a child. There was a real lack of information
around this and it wasn’t until I educated myself that I
found out MS didn’t have a negative effect on the male in
this regard. I was diagnosed seven years ago. Four years
later, we had our first child, Lilyanna, and she is a very fit
and healthy young girl. In July we are having our second
and we are all very excited. I would like to have more
children, although I have to run it past my wife first.
Conor Devine
I GOT MARRIED in 1998 and decided to leave it at least
five years before having children just to make sure my
symptoms were under control. I had my first child in 2003
and had a great pregnancy with no issues. I loved being
pregnant. I had a birthing plan in which I stated that there
was to be no intervention unless the baby was at risk.
The labour was quite long and I refused all offers of
epidural, mainly because I was afraid of the potential side
effects. I was offered a C section and refused. In the end
the midwife called my husband and advised him to get
me to have the epidural as I was probably putting my
body under unnecessary stress. I did take it and all went
well. Both my baby and I were great.
Twenty one months later I had another child, and three
years later my third and final child. On the last two I didn’t
have the epidural, and both went fine.
Since being diagnosed with MS I have made efforts to
watch what I eat and to try to keep as physically strong as
possible. I did my best to keep a healthy diet and exercise
regime while pregnant. Thankfully it worked. I have been
symptom free for 16.5 years.
ALWAYS WANTED children, and hoped to have two or
more, so when I was diagnosed with MS in November
2005 I decided not to wait too long to have my first. I
got married in April 2006, and fell pregnant in May. My
pregnancy didn’t run smoothly. At six months I relapsed,
which is very rare. I had a Caesarean section because I
wouldn’t have the energy to push the baby out. Despite
all the difficulty, my daughter was born in perfect health,
which made up for all the hardship.
Unfortunately I did suffer a relapse after the birth.
Spasticity and extreme fatigue took hold of me. I
breastfed by expressing for two weeks to help my
daughter thrive, but was then put on medication which
meant I had to move to formula. Having a good support
network is essential, and I had great family support,
along with my husband. They were able to take up the
slack while I rested and got over my relapse.
My symptoms may have progressed with the pregnancy
but that could have happened anyway. My pregnancy was
an isolated, severe case but this shouldn’t put you off. MS
or not, pregnancy differs from person to person. The main
thing is I got my bundle of joy from it. And today, that’s what
I remember most.
Some questions answered
Will I give my child MS?
No. MS is not considered an inherited condition. The risk is
estimated at between 1 and 4% for children of those with
MS. In the general population, the risk
is 0.1%.
Will pregnancy affect my MS in the long term?
No. A number of studies have shown that pregnancy does
not change the long-term course of MS.
Does MS affect my fertility?
No. MS does not affect fertility, conception or gestation.
There is no evidence to show it increases the chances of
ectopic pregnancies, miscarriages or premature birth.
Does pregnancy bring on relapses?
Studies have shown that relapse rates during early
pregnancy tend not to be affected, but reduce during the
later months of pregnancy. However, relapse rates in the
first few months after birth are high. After the baby is six
months, relapse rates return to the pre-pregnancy rate.
Will my current symptoms get worse?
Most women with MS feel well during pregnancy
and encounter no problems. Some, however, see
an increase in symptoms such as fatigue and
bladder problems.
What should I do about medication?
Discuss it with your GP or neurologist, but you may have to
come off medication before getting pregnant.
Can I receive steroids if I have a relapse when
Only under �certain exceptional circumstances’
such as a severe relapse will your neurologist recommend
Source: HSE’s MS Guide to Best Practice
MS Information Line: 1850 233 233
With the right set of wheels to match their
needs, people with MS can stay
independent and active
BUYING A MOTORISED wheelchair or scooter is a big
decision for people with MS, and one that must be
accompanied by professional assessment. That’s
according to Tess Kennedy, Regional Community
Worker, MS Ireland North East.
She says people who buy powered wheelchairs
without any proper assessment could end up with one
that is entirely mismatched to their needs.
She asks people to remember that, often, suppliers
want to make a quick sale or don’t understand the
subtle needs of people with MS.
“This means people with MS are often paying large
amounts of money for something they then find is
unsuitable. As such, an assessment by a qualified
person is needed, either an occupational therapist
or someone registered with the Assistive Technology
Practitioner (ATP) Society,” adds Tess.
Occupational therapists assess aids for daily living,
which include manual and motorised wheelchairs, but
not scooters.
Some suppliers of motorised wheelchairs and
scooters are qualified to assess the needs of users,
Myrddin James, ATP with 3r mobility and a founder
member of the ATP Society, says assessments are
extremely important because there are many aspects
of wheelchairs and powered scooters that users may
not consider.
The professional, he says, will consider various
wheelchair features such as the frame, wheels and
tyres, foot, arm and back rests.
For indoor wheelchairs, they’ll look at the width of
doors and the manoeuvrable space within rooms.
For outdoor use, they’ll examine the distance the
user wants to travel and the types of paths and roads
they’ll encounter. Are there ramps in the right places
and can the chair handle bigger kerbs?
By having a stable seating base and correct
positioning, the wheelchair will make everyday tasks
much easier. Something that is often overlooked is
whether the seat is wide enough to accommodate
outdoor clothing.
The ATP will assess things such as the wheelchair’s
controls and the aids for transferring in and out.
Manufacturers of wheelchairs tend to claim
that their chairs can be dismantled and folded for
in cars.
But is this easily done? Will you be able to lift the
components into the car, then out, then back in and
out again when you get home?
“We look at things such as transportation. Who’s
going to lift the chair if it needs to be lifted? Are other
family members going to be involved? And will they be
able to lift the wheelchair?” says Myrddin.
The ATP Society promotes the professionalism of
specialists and assistive technology salespeople. You
can find out if an ATP is registered with the society by
inserting their practitioner number at
“There is a very clear code of practice, which all ATP
practitioners will be following. This will ensure that
people are not buying products incorrectly and that
their money is being spent wisely,” says Myrddin.
The good news is that assessments for motorised
wheelchairs and scooters are free.
Contact your occupational therapist or see
MS in the MEDIA
What the
papers say
Recent media coverage
of court cases involving people
with MS has portrayed a
disproportionately negative
image of the condition
THE IRISH WRITER and poet Oscar Wilde once said
“the only thing worse than being talked about is not
being talked about”. Thus followed a number of other
quotes from a variety of sources, but in the 20th
century the proverb “there’s no such thing as bad
publicity” emerged.
Recent cases involving MS in Ireland seem to
question this theory. In the past six months, MS has
featured heavily in the media, in particular through two
heart-wrenching stories.
In January, the High Court ruled against assisted
suicide after person with MS Marie Fleming brought a
landmark case.
Ms Fleming contested the validity of the Criminal Law
Suicide Act of 1993. Under the act, a person who assists
another to die faces prosecution. Ms Fleming wanted
the law changed so that her partner, Tom Curran, could
assist her to die at home when the time came.
Ms Fleming has had MS for the past 27 years. She is a
full-time wheelchair user, as she has lost power in her
limbs. Her swallowing and speech have been affected,
and she lives in pain.
During the case, Ms Fleming stated that the 1993 act
contravened “her rights to autonomy and dignity under
the Constitution and the European Constitution of
Human Rights”.
She called for a change to the section on assisted
suicide, or for the Director of Public Prosecutions to set
out what would be considered when prosecuting people
who help others to die.
After a four-day hearing, the three-judge divisional
High Court rejected her call for the change. It agreed that
her right to autonomy was affected but could not agree
the legislation was disproportionate.
Ms Fleming appealed the decision to the Supreme
Court but in April they ruled that the legislation should not
be changed.
In March, the tragic case of person with MS Evelyn Joel hit
the headlines again when the courts handed a two-year
suspended sentence and 240 hours of community service to
her carers for manslaughter by neglect.
Mrs Joel’s daughter Eleanor and Eleanor’s boyfriend
Jonathan Costen had been caring for Evelyn at the couple’s
home in Enniscorthy, County Wexford.
Family members and social workers had been refused entry
to the couple’s home in the lead up to Evelyn’s death. When
she was finally taken out of the home, in January 2006, Evelyn
was found to be malnourished and unwashed. She died a
short time later. The details of the case were appalling, and
extremely difficult to hear.
Media coverage
At the time of the judgement, Ava Battles, Chief Executive of
MS Ireland, said she was concerned about the way MS was
being perceived.
“It is disheartening to read again details of the neglect
Evelyn Joel needlessly suffered. It is an unfortunate
coincidence that the sentencing has occurred only a few days
after the ruling in the Marie Fleming assisted suicide case. Both
cases portray a life with MS that is both very uncommon and
negative,” she said.
“Yes, for a small number of people life can be extremely
difficult but for the vast majority a long and relatively
comfortable life can be led.
“Living with MS is very possible with the right support
from family and friends, the services of organisations like MS
Ireland and appropriate state services such as neurology and
rehabilitation and social welfare payments.
MS Information Line: 1850 233 233
“We applaud people like Marie Fleming for standing up for
her rights and believe that neglect of any kind of someone
with MS is unacceptable. However, a more balanced image
of MS must be presented so people with MS live with hope not
While the details of the two cases were in themselves
upsetting to hear for people affected by MS, the media
coverage was also at times misleading and hurtful.
In many stories both women were called �MS sufferers’.
Regular readers of MSnews may have noted that MS Ireland
uses the term �people with MS’. This is similar to how other
organisations such as the Rehab Group avoid the term
�disabled people’ in favour of �people with disabilities’ and
�wheelchair users’ in some cases. We don’t think people
should be defined by their condition.
Other language such as �bed-bound’ and �no quality of
life’ was used repeatedly. Most upsetting for many readers
was the fact that Ms Fleming was constantly referred to as
�terminally ill’ or in the �end stages’ of MS.
As a result, MS Ireland received many calls and emails from
people with MS and their families, who were afraid that a
bleak and painful future lay ahead of them.
MS Ireland asked its website visitors for their opinions on
the matter.
One user, Willeke, said: “I contacted some newspapers
asking why they kept referring to MS as �a terminal illness’
because I knew people in my environment thought I had been
�hiding’ things from them by never referring to my MS as
“The newspaper editors said that they use the language the
solicitors use and that they therefore use their lingo in papers
and/on TV. While the editors agreed with me, they just follow
what is being used in court despite knowing the negativity it
Another user, Sharon, added: “Yes I do believe that these
stories portrayed in the media have caused fear and concern
for younger MS sufferers. My sister is in her late 20s and was
diagnosed with MS three years ago. I feel she is still coming
to terms and trying to move on with her life as positively and
courageously as she can. The media doesn’t help when it adds
more fear and trepidation to whatever fear and hurt people
are feeling already.
“Everyone’s diagnosis is different and future prospects are
different, and I feel that people with MS need to know that
there can be a future and positive outcomes for them.”
Even those who had the disease for some time found the
coverage difficult to take.
Stephanie commented: “I was 35 when diagnosed and with
a young family. Such a scary time! I’m happy to say 12 years
later I’m doing great. However, I too was very upset and found
the media talk frightening. It has had such a negative impact
on my thinking that I have to try to ignore any further reports.”
If the two high-profile cases did anything,they heightened
the media’s interest in MS. But the media coverage
sometimes painted a very different picture of MS than what
it is for most people.
MS is a progressive neurological condition. The vast
majority of people with MS live relatively comfortable lives
with available services and supports. However, a small
proportion face significant challenges.
Assisted suicide debates are not confined to MS. Familial
neglect is something that happens vulnerable people of all
ages and in all societies.
That said, we acknowledge that the Marie Fleming case
would have been watched carefully by people who have
considered this route. Nor can we ignore the fact that
cases of neglect do occur.
When it comes to media reporting, Taragh Donohoe,
Communications Manager with MS Ireland, calls on the
media to provide more balanced coverage.
“Throughout the coverage of both cases we were often
asked to comment. Our aim was to never betray the
experience of the two women involved as their experience
of MS is as true and valid as anyone else’s.
“However, we always asked reporters to balance the
coverage to reflect that most people with MS focus on
life-enhancing ways of life and have support from their
family, friends or health professionals, no matter how
limited. We offered people with MS for interview, and many
of our members contacted the papers themselves.”
However, as the media coverage focused intently on the
two women, disappointingly the experience of other people
with MS was rarely represented.
It was refreshing to see a young person with MS on The
Late Late Show in January talking about his experience
of MS. Conor Devine spoke about his life with MS and his
newly released book. (Read about Conor on page 20.)
During World MS Day, MS Ireland hopes to challenge
the public’s perception of MS by telling the stories of
young people with MS and their desire to achieve their
dreams despite MS. See page 4 to see how you can
get involved.
Many may believe that Oscar Wilde’s quote still stands,
but we would point to another expression used in the
early 20th century and first published in a US newspaper
around 1915:
“All publicity is good if it is intelligent.”
If you have MS and are concerned about the topics
discussed please contact the MS Information Line
on 1850 233 233 or your local regional office.
readers’ stories
readers’ stories
Devine inspiration
Tyrone businessman Conor Devine has
hit the headlines recently after his appearance
on the Late Late Show to publicise his new
book about life with MS
MS CAN STRIKE at any time. For Conor Devine his
first encounter with the disease came while he was
honeymooning in Mauritius in 2006.
It wasn’t an idyllic start to the relationship with MS. In
fact it was hellish. On the first day of his honeymoon, Conor
began to experience pins and needles in his arm. Over the
next 24 hours, his central nervous system came under attack.
Much of his honeymoon was spent in hospital. Doctors
dismissed an initial diagnosis of stroke in favour of a virus,
and predicted that he would get back to normal when he
returned to Ireland.
He didn’t.
For the next 12 months, Conor experienced severe pain;
his throat felt like it was closing over, and there was intense
pressure in his head. He took six months off work, and
attended a neurologist.
Every possible eventuality went through his mind. He
imagined stomach cancer or motor neurone disease. But
almost a year to the day after his first symptoms, he was
diagnosed with relapsing-remitting MS.
“Initially it was a relief because some questions were
answered, but then I had more questions. How would I pay
my mortgage? How would I have children? I was convinced
I’d be in a wheelchair in three years. Over the next 18
months I slipped into a dark hole,” he says.
Conor hails from a footballing background, played soccer
competitively from a young age, and has taken part in a
number of international tournaments. He was devastated
that his sporting life was at an end.
“It was a massive blow because I felt I was in my prime. I
was completely in denial, and I shut down.”
Despite his despair, Conor began to research the disease.
Eventually he came across the American chat show host and
person with MS, Montel Williams.
“I bought his book and was blown away by his story. It
gave me some hope.”
Three and a half years after diagnosis, Conor felt himself
emerge from the hole to a world that wasn’t as dark as he’d
“I put a plan in place, which involved three things:
medication, diet and exercise, and a positive approach.”
He changed his medication from Rebif to Copaxone.
He cleaned up his diet and returned to the gym, slowly
building up from 20-minute sessions to one-hour
sessions, as well as running and cycling each week.
He also started taking a positive approach to his
Within six months, he began to see his MS symptoms
lessen, and since 2010 has become stronger.
Today he uses his MS to reach out to others, and has
written a book called �Attitude is Everything’.
“MS is an extremely difficult disease to talk about
because its course differs in so many ways, but I wrote
the book because I’d like to inspire people and give them
hope. I’d like newly diagnosed people with MS to read
my book and get some strength from it,” he says.
He has run two marathons, and is set to do GaelForce
North in June, a racing event comprising a 19.5km run,
42.5km bike ride and 2km kayaking race.
His business, a real estate and corporate restructuring
firm, is also doing well. He was asked to talk about his
MS at a pharmaceutical conference in Berlin in April,
with plans to speak further afield over the next year.
He balances all of this with being a father. He and his
wife Kate have a two-year-old daughter, Lilyanna, and
are expecting a new baby in July. Life is busy.
“It is very structured, I get up every morning at 5.30
and when I come home from work at 6.30pm I spend
time with the family. If you don’t work at your MS, your
marriage or your business, then you won’t get the
rewards,” he says.
When it comes to MS, Conor has one goal: “to change
the perception of MS across the world”. Given his
determination, he could very well achieve it.
�Attitude is Everything’ is available to buy at www.
createspace.com, an Amazon company.
Conor is a guest speaker at our �Young People with
MS Gathering’ event on 11 May. See page 4 for details.
MS Information Line: 1850 233 233
Person with MS Maura Tummon
underwent a hip replacement
operation last June despite advice
against doing so, and concerns
about recovery. Here she tells of
her experience
I WAS DIAGNOSED with MS 11 years ago, and for the
past two years found myself limping a lot and falling
on occasion. At the age of 66, I had been using a crutch
and rollator for mobility around the house and for short
walks. I wasn’t on continuous medication but needed oral
and/or IV steroids every two to three months to reduce
bouts of severe tiredness.
I was increasingly unhappy with my condition, and
despite the fact that I had no pain in my hip, I went to
my GP and requested an X-ray. The results showed
severe degeneration of my left hip but the GP advised
that because of my MS I would not be able to have a
hip operation. I requested a referral to an orthopaedic
consultant for specialist advice.
The consultant told me that a �new hip’ operation was
required. The MS was not a factor for him, though he had
never performed a hip operation on a person with MS.
I was given a check-up in the hospital, and met with a
neurologist who voiced concerns about how my MS would
react to the operation. After much discussion with family
and nursing friends, I decided to go ahead.
I had the operation last June. It went very well, and the
recovery was �normal’ and without incident. There has
definitely been an improvement in my overall mobility
since then, and although I still use the rollator I can
travel bigger distances than before. Another big benefit
is that I have not had to take any steroids since last April,
and overall my health is better. I am very pleased with
the outcome.
I hope this little story about by �gamble’ will give some
comfort and help to people with MS who are considering
undergoing operations. Every condition or circumstance
is unique. I would be delighted to answer any questions or
share more details with anyone who would like to contact
me. My email and address details are with the editor.
An innovative pill box could make
forgetting important medication a
thing of the past
Box of tricks
WHEN BENNY HENRY was diagnosed with Parkinson’s
disease seven years ago, he never thought he’d get to a
stage where he forgot the disease long enough to forget
his tablets.
However, after a couple of years Benny decided that
enough was enough and he was going to stay positive.
The Cork native started running every day, leaving his
Parkinson’s behind, he says.
This did pose a slight problem, though, as Benny
started to forget his medication. A businessman, he
began to look around for a solution and came across
an inventor of a pill box that comes complete with eight
compartments to hold tablets, a digital clock and a
unique alarm system with eight settings. The apparatus,
called Tab Time, is the size of a mobile phone.
Benny tracked down the inventor and has come to an
arrangement whereby he will be distributing the boxes in
Ireland through his business Meds Management.
Phil Sexton Curry, member of the Clare voluntary
Branch of MS Ireland and involved with MS for many
years, has found the pill box extremely helpful. She is
assisting Benny in promoting the product.
The Tab Time is being sold through pharmacies and
will be available nationwide shortly. It retails at €28.99.
Contact your local pharmacist or Benny on 086 807
1880 or [email protected].
Readers’ stories
Fundraising wonder
Foot drop is a debilitating MS symptom that can severely
curtail movement, but Grace Kavanagh found relief in
WHEN GRACE KAVANAGH had an MS attack in 2011, she
was affected by foot drop. A gait irregularity, it occurs
when the forefoot drops due to damage to a nerve in the
fibula or a paralysis of muscles in the lower leg. The
person is unable to move their ankle or lift their toes on
the affected foot as a result.
At that stage, Grace had MS for five years, and the
disease affected her mobility, balance and energy levels.
“I had a more severe attack in 2011 which left me
with a lot of weakness in my right leg, and foot drop,
which makes walking difficult, exhausting and at times
hazardous,” she says.
Grace became reliant on her walking stick. Even
a short trip to the shop would turn into a 20-minute
journey that she couldn’t do alone.
“I lost my independence and was reliant on family and
friends to help me get around as I never left the house
alone due to fear of falling. This was a very frightening
time and required a lot of adjustment for me as I had
been quite independent.”
She started doing physiotherapy in an effort to
rehabilitate her foot, but soon it became evident that she
needed something to stop the falls. Grace tried various
Working better for you
MS Ireland’s Regional Offices and
voluntary Branches are working more
closely to plan and deliver services
IN THE PAST 18 months MS Ireland has been working
hard to establish better ways of working to improve the
services we deliver to people with MS, their families and
others with whom we work. These changes were based on
feedback we got from research done in 2011 among our
service users.
One of the most significant changes is the integration of
services at a local level. Our staff in the Regional Offices
and volunteers in the voluntary Branches have been
working closely to plan and deliver services together.
Grace Kavanag
things with her physiotherapist, including massage and a
Dictus band (an ankle strap).
“My foot drop continued to get worse, so we decided
we needed something more significant to help me walk.
My physiotherapist suggested I try the Bioness L300
device. This system made walking a far less frightening
and exhausting prospect. It ensures that my foot lifts
correctly when walking so I am not dragging my leg or
having to put in so much effort to move short distances.”
Grace wears the electronic device, which consists of
three pieces, under clothes, so it is quite discreet. It cost
in the region of €5,500, and there is no government
funding available for it.
“With my Bioness my walking is faster, steadier
and more balanced. I feel much more confident when
wearing the device, so much so that I don’t rely so much
on walls and furniture for support at home and am far
less reluctant to get up and move as I know each step
won’t be as tiring.
“I do still have MS and the ups and downs that come
with it. Bioness can’t change that or take away the other
symptoms, but it does give me back a level of freedom I
thought I had lost,” she says.
Key developments have included:
•Staff and voluntary Branches are now meeting every
quarter to plan services and address issues
•Branch training has commenced; this will give all
committee members better information about roles
and responsibilities. It is also an important tool to learn
about issues we can help Branches with
•Members of the Senior Management team and Board
members have attended every AGM to explain more
about the integrated model, the role of national office
and the importance of teamwork
•Voluntary Branches continue to financially support
services in their regions by responding to our request
of 15% of cash in the bank.
We wish to thank all our staff and volunteers for their
patience, commitment and hard-work through these changes.
We realise change is hard but we know we are on the best path
to ensure people with MS get the best supports available.
MS Information Line: 1850 233 233
THE MS EAST Wicklow Branch
recognised the work of Persis Quin
earlier this year when it presented
her with a gift. Here she is pictured
with Ava Battles, Chief Executive of
MS Ireland, at the Branch’s New Year
Persis has worked tirelessly on
behalf of people with MS for 48 years,
fundraising for MS Ireland long before voluntary Branches
were established. She set up the Bray voluntary Branch,
where she served as committee member, and was also latterly
committee member of the East Wicklow Branch. Persis won
the MS National Carer of the Year award in 2010 in recognition
of her work in caring for her husband Aidan, who has MS.
21 years young
FRIENDS AND MEMBERS of the Dublin West Brendan
Kenna Branch had a very special, fun night at the
Branch’s recent 21st birthday celebrations. At the
event, Chairman Francis Timmons said a big thank
you to everyone involved. Without the dedication, hard
work and support of the
various committees and
volunteers, the Branch
would not be able to help
people the way it does.
Lorraine O’Neill and
Sabrina Reid share
a laugh
From left: Sabrina Re
Angela Connolly, Fran
Timmons, Katie Cumm
Imelda Connolly, Mich
ael Fox,
Noleen Walker and
Caroline Mc Kiernan
MSNEWS WOULD LIKE to celebrate and promote the
work of the voluntary Branches across Ireland and as
such we are looking for submissions for the magazine. Do
you have news about your Branch you’d like to share? If
you send us images and text – either by email or in hard
copy – we will include them in the magazine and on the
website. Please send your contributions to Denise Carey
at [email protected] or call her on 01 678 1623.
Offaly celebrations
THE OFFALY BRANCH recently celebrated its 26th year in
existence, during which time it has done wonderful work
for people with MS. Pictured at the Branch’s 25th birthday
celebrations in 2012 were (from left) committee members
ГЃine Smyth, Marie Duffy, Andy Duffy, June Martin and
Damien Fox.
FOURTH-YEAR ART and design students from the
Galway-Mayo Institute of Technology in Castlebar held an
art exhibition in February, with all proceeds going to the
South Mayo Branch. The Missing Spark,
co-ordinated by Seamus Burke, took place in the Linenhall
Arts Centre. Internationally renowned artist Breda Burns
officially opened the exhibition. The South Mayo Branch
would like to say a huge thank you to the students for
their support.
Charitable campaign
MS IRELAND IS set to benefit from a fundraising campaign
at Bunbrosna GAA on the Westmeath/Longford border. The
club is hosting a Lord Mayor campaign, with four candidates
in the running. Each candidate is raising money by holding
events in the locality, and half of all money raised is going to
Candidate Andrew Whitney has chosen MS Ireland to
receive his support. So far, he has had some very successful
events, including a celebrity training session for children, an
All-Ireland ticket raffle, and an American tea party, which was
attended by over 200 people.
Andrew’s next event is a barbeque in Feerick’s Hotel,
Rathowen, County Westmeath, on 25 May. Andrew and the
Mullingar Branch are calling on everyone to come along and
show their support.
IRELAND CONTINUES ITS new-found love affair with
exercise, as an increasing number of people take on various
challenges while raising money for charity. You can help MS
Ireland by participating in a number of treks and marathons
over the next few months.
The 2013 Flora Women’s Mini Marathon takes place on 3
June, and it’s not too late to get involved. We have some
spare race entries for anyone who wants to sign up now
and fundraise for MS Ireland. Just contact Caitriona on 01
678 1600 or [email protected]. Ailis Egan, the Irish
Women’s Rugby team prop, pictured above, is supporting
the campaign by taking part in the marathon with some of
her team mates.
MS Ireland’s Camino Trek continues to be a hugely popular
fundraising event. From 1 to 11 June 2013, walkers will
once again get to experience some of the lesser known
and unspoilt parts of northern Spain as they pass through
Thanks for readin’ and raisin’
poppy fields, the lanes of
enchantment of Galicia and
the mystical city of Santiago
de Compostela. This year sees
walkers take a different route,
passing through some additional sun-swept villages.
The Malin to Mizen Head walk has become an established
feature on the Irish walking calendar. This year, MS Ireland
supporters Steve Broekhuizen and Claire Coughlan are
taking on the challenge from 12 August to 5 September.
They are hoping people will join them even for one day on
the route. For a full itinerary or to join in the walk, which is
sponsored by Motorparts.ie, call Steve on 087 603 1824.
As the summer fast approaches, Ireland’s walkers
have already been out enjoying the brighter skies. The
Connemara trek, which took place over the May Bank
Holiday weekend, allowed walkers to discover the rugged
beauty of the west.
Meanwhile, the second annual Royal Canal Walk drew
a huge crowd, as walkers made their way from Mullingar
Railway Station to Longwood Harbour to Maynooth Harbour
and to Ashtown over the three-day event. Thanks to all; we
look forward to getting some images from the adventures!
Adventure seekers should look out for the following
upcoming events being held in aid of MS Ireland
7-15 September:
Follow in Dracula’s foot steps and trek with us in Transylvania,
Discover the mountains, landscapes and mountains of
prince Vlad the Impaler of Wallachia, the inspiration for the
fictional character of Dracula.
An information evening takes place on 10 May in Dublin.
If murder mysteries are your thing, a Murder Mystery
Weekend will take place at the Thomas Prior Hall in Dublin 4
in October. See if you can work out the murderer and his or
her motive!
5-6 October:
MS Ireland is calling on the daring among you to take part in
our Skydive at the Iris Skydiving Club.
2 November:
TombRaider is a 10km walk through the Dublin Mountains
with a twist; it takes place at night! A group of walkers will
start in the foothills and pass four ancient tombs on their
travels. This spooky event is very timely, coming just after
Hallowe’en. We’ll have more details about these events in our
next issue.
YOUNG READERS AROUND the country immersed
themselves in all things literary last October as the 2012
MS READaTHON took place.
Some 17,000 readers in 515 schools, 320 libraries
and 160 bookshops around Ireland helped raise more
than €580,000.
A huge big thank you to everyone who took part in the
MS READaTHON this year - students, teachers, librarians,
parents, families and anyone who supported or sponsored.
Of course, the great thing about the MS READaTHON is
that we get to give back, and some very avid readers were
awarded great prizes:
MS Information Line: 1850 233 233
1st - Children’s House, Stillorgan, County Dublin
2nd - Montessori Education Centre, Dublin 1
3rd - CBC Monkstown Park Junior School, Dun Laoghaire,
County Dublin
Library winner
ColГЎiste Pobail Acla, Westport, County Mayo
Winner of a SONY NEX compact SLR camera:
from Saint Patrick’s BNS, Lombard Street, County
MS Ireland would like to extend a huge thanks to
companies that have lent their support to the Society in
recent months.
Winner of a trip to see Manchester
United play at Old Trafford:
Thomas Mann
Gillian O’Connor
from Lios Maighir NS, Newmarket, County Cork
Winner of a digital camera:
Emma Gardiner
from Saint Nicholas NS, Adare, County Limerick
4th place - Winner of a one-day family pass to Dublin
Zoo: Charlie O’Shea from Ballinteer Community School in
Ballinteer, Dublin 16
Winning Teacher - Winner of a weekend break away:
Alizia Gisler from CBC Monkstown Park Junior School in Dun
Laoghaire, County Dublin
And the 2012 school and library winners were:
1st - Inishboffin NS, Cleggan, County Galway
2nd - Scoil Caitlin Naofa, Tralee, County Kerry
3rd - Esker NS, Athenry, County Galway
1st - ColГЎiste Naomh FeichГ­n, Corr na MГіna, County Galway
2nd - Meanscoil Nua An Leith Triuigh,
Castlegregory, County Kerry
3rd - ColГЎiste Oiriall, Monaghan Town, County Monaghan
We are delighted to be chosen as one of the charities
of the year for CPL, a recruitment, outsourcing and HR
solutions company with offices throughout Ireland. Each
year CPL plans a number of fundraising and volunteer
events to raise money for its chosen charities.
eBay Inc/Paypal
Online trader eBay
donated €4,000 to
MS Ireland recently
through its PayPal Giving
Fund. It will go towards
counselling services in
North Dublin.
There are lots of ways your company can
help support the work of MS ireland
Sell pins: MS Ireland is asking supporters to take a box
of emblem pins to their workplace. Our pins are being
sold for €2 each. If you think your workplace would be
interested, contact Grainne on 01 678 1600.
Nominate us as charity of the year: If your company
nominates a charity to raises funds or volunteer for,
please consider MS Ireland. We can provide you with a
corporate fundraising pack and would be happy to visit
your company to give out information about MS.
14th Annual General Meeting
(53rd AGM since MS Ireland’s foundation)
Dear Member,
IN AN EFFORT to reduce costs, the call for motions and
board nominations are advertised in this issue of MSnews
(below). The AGM legal notice and voting papers will be
sent to each member along with the next issue.
Notice is hereby given that the 14th Annual General
Meeting of the Multiple Sclerosis Society of Ireland will
take place in Galway on Saturday, 28 September 2013 at
3pm in the Clayton Hotel, Galway.
The results of the postal vote for the board vacancies and
motions, if any, plus the council’s nomination to the Board
will be announced at the AGM.
The procedures for motions and board nominations are
listed hereunder.
Every registered member is entitled to a postal vote.
Voting papers will be posted to all registered members
three weeks prior to the AGM and must be returned to
National Office, MS Ireland, 80 Northumberland Rd, Dublin
4 by Friday, 20 September 2013.
Ava Battles
Company Secretary
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Any member or branch may forward a motion to the Standing
Orders Committee so that it can be clarified legally and its
suitability for an AGM confirmed. (Operational motions should
only be sent to the Chief Executive or Chairman for decision
by the Board). Closing date for receipt of motions is Friday, 23
August 2013.
Call for Board Members
We are currently seeking candidates to go on to our panel of
potential board members. Members, branches, council, the
Board and staff may propose candidates. All nominations
must be proposed and seconded by members. The
nominating committee reviews the applications annually and
recommends candidates to go forward for election by the
The nominating committee will take into account the range
of skills necessary for board membership and, where possible,
the geographical spread, gender balance, experience and
qualifications of the candidates. The committee will evaluate
candidates (both new and those seeking re-election) as to
their suitability prior to putting its recommendations to the
overall membership for decision in a postal vote. Further
details and nomination forms are available on the website.
Closing date for receipt of nomination forms for the
incoming Board is Friday, 23 August 2013.
campaign is aimed at highlighting
the fact that neurology and neurorehabilitation services in Ireland are the
worst in Europe.
If you’d like to get involved you can
send the postcard opposite to your local
TD. Let them know that you’re unhappy
with neurological services in Ireland.
Here’s how you do it:
Bloggers wanted
• Cut out the postcard along the
dotted line.
• Go to www.ms-society.ie to find
out the address of one of your local
• Put your name and address on the
bottom of the postcard. This way you
let the TD know you’re one of their
constituents and give them the chance
to reply.
• Put a stamp on the postcard and
send to the TD’s address – or if you’d
rather some privacy, put it in an
envelope and send it on.
• Let MS Ireland know what response
you get.
Visit our website to email all your local
TDs. With a few clicks of the mouse you
can send a prepared email to all the
representatives in your area.
I am a member of your constituency and I want to ask for
your help in solving a very serious problem in our health
care system. Did you know:
MS Information Line: 1850 233 233
The only national organisations
providing information, support
and advocacy services to the MS
• Many people have to wait over a year for a
neurology appointment in Ireland. In the UK, the maximum waiting time is 19 weeks.
• Ireland has the fewest rehabilitation consultants per capita in Europe.
• Continuous cutbacks mean that vital neurological services are being curtailed or cut down completely.
I am asking you to help by calling for an
implementation plan for the Neurorehabilitation
Strategy published 18 months ago and by supporting
initiatives that can improve services for people with
MS and other neurological conditions.
I look forward to your response.
For an information
sheet or to sign up,
contact Emma Rogan
at [email protected]
or 01 678 1600.
Contact details: www.ms-society.ie | [email protected] 01
678 1600 | MS Info Line 1850 233 233