Epilepsy News - Epilepsy Ireland

Epilepsy News
Shining a light on epilepsy
Epilepsy Ireland Issue 61 Spring/Summer 2013
Rose and rose
buds support
epilepsy!
In This Issue:
Rose of Tralee Nicola McEvoy is
pictured with little rose buds, twins
Hannah and Emma Boughton, both
of whom have epilepsy, at the launch
of European Epilepsy Day and the St
Valentine’s Rose Appeal in February.
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Epilepsy Ireland – A new name
Government fails people with epilepsy
Public understanding of epilepsy
National award for Training For Success
Disclosing your epilepsy
National Epilepsy Week
contents
Note from the editor
Launching the new Epilepsy Ireland name in
February are Emma Boughton (aged 6) and
Sadbh Mechan (aged 5) pictured with Rose of
Tralee Nicola McEvoy and Peter Murphy, Deputy
CEO, Epilepsy Ireland.
3 National award for Training
for Success
4 News from around the
world
5 Epilepsy Monitoring Units
6 European Epilepsy Day
8 Freddie and his epilepsy
Welcome to the Spring/ Summer 2013
bumper issue of the new-look Epilepsy
News, the first under the new Epilepsy
Ireland name.
10 Epilepsy journalism award
for Midlands 103fm
National Conference 2013
The changeover to Epilepsy Ireland has
been smooth and the feedback received
from all quarters has been overwhelming
supportive. We hope that the new name
will play a key role in shining a light on
epilepsy and helping to change public
perceptions of the condition. Sadly, as the
results of our recent survey show, much
still needs to be done in this area.
11 Disclosing your epilepsy
12 Generic substitution on the
way
National Epilepsy Week
14 Falling, by Peter Sirr (part 2)
16 Epilepsy Online Support
Group
17 Talking to your children
about your epilepsy
18 Epilepsy research at DCU
European Month of the
Brain
19 New Director of Services
Epilepsy Awareness
Committee
the time of writing, although a schedule
for the opening of both units has now
been announced. Of equal concern is
the Government’s refusal to allow an
exemption for anti-epileptic drugs in the
Health (Pricing & Supply of Medical Goods)
Bill which will introduce a system of
generic substitution in the very near future.
Despite a long and thorough campaign, it
now seems that we will need to shift our
attention away from the political arena in
order to ensure the safety of people with
epilepsy.
The year has been an exceptionally busy
one to date with plenty of good news and
not-so-good news to report. In addition
to another successful European Epilepsy
Day, we report in this issue on a national
award for Training for Success and an
international award for an Irish radio
documentary on epilepsy.
National Epilepsy Week (May 20th – 26th)
provides the opportunity to launch
an educational campaign on generic
substitution in epilepsy and the week is
also dominated by a number of significant
international conferences taking place
in Dublin including the European Forum
on Epilepsy Research. May has also been
designated European Month of the Brain
by the European Commission and you can
find details of all our events this month on
pages 22-23.
However, we are disappointed to report
that the Epilepsy Monitoring Units in
both Cork and Dublin remain closed at
We hope you like the new design, created
by our friends at What Box? Creative. Let us
know your thoughts!
European Forum on Epilepsy Research
20 Fundraising news and
events
22 Regional news and events
researchers, clinicians, care professionals,
lay organisations, industry, people with
epilepsy, health policy makers and
government representatives. The 3-day
event will aim to devise strategies for
increased funding for epilepsy research
and to tackle important issues such as
epilepsy stigma and standards of care in
epilepsy.
The European Forum on Epilepsy Research
(EFER) will take place in Dublin from
the 25th to 27th May as part of the Irish
Presidency of the EU and European Month
of the Brain.
249 Crumlin Road,
Dublin 12.
Tel: 01 4557500
Fax: 01 4557013
Email: [email protected]
Web: www.epilepsy.ie
The Forum is organised by Epilepsy
Advocacy Europe, a Joint Task Force of the
International League Against Epilepsy and
the International Bureau for Epilepsy and is
part funded by the European Commission.
Registered Charity Number: 6170
Design and layout by
What Box? Creative.
Printed by Doggett Print & Design
This ground-breaking initiative brings
together the key stakeholders in
the epilepsy community including
2
Céad míle fáilte to all our international
visitors this month!
www.epilepsyresearcheurope.org
Star Award for Training For Success
Left: Current student Denise O’Connell
accepted the Aontas Star Award on behalf
of TFS.
Below: Celebrating the Star Award are
David Gillick, student; Paul Sharkey,
Epilepsy Ireland; Maire Tansey, TFS course
facilitator; Denise O’Connor, student and
Honor Broderick, Programme Manager.
Training For Success (TFS), Epilepsy Ireland’s one-year training
programme for people with epilepsy run in partnership with the
Institute of Technology, Sligo was recently announced as the
winner of the 2013 AONTAS Star Award - Nationwide Category at a ceremony in Dublin.
The Star Awards are presented every year to acknowledge
and showcase the work that communities and communitybased organisations make in the delivery of adult educational
programmes throughout the whole country. Projects must
show a high level of collaboration and partnership amongst
participating groups; a learner-centred approach to education
and clear evidence of outcomes.
students who have attended over the years. It is this partnership
that has made TFS the success it is”.
115 projects were nominated in total this year, covering the four
provinces and the fifth Nationwide category, of which TFS was
declared the winner.
International research shows that people with epilepsy are
more likely to underachieve in education than people without
epilepsy, and they also face greater challenges in accessing and
maintaining employment. From 1998 to 2012, 180 students
have completed the course. Of these students, 23% progressed
onto higher education, 18% gained employment and 36%
pursued further education and training.
TFS is the only course of its kind in Europe, in which a third
level college and a voluntary organisation have teamed up to
tackle the employment and education needs of young people
with epilepsy. As well as creative and academic topics, the
course provides a tailored individual focus on career choices,
educational and employment goals, identification of upskilling
needs and the management of epilepsy.
Accepting the award from Minister for Training and Skills, Ciaran
Cannon on behalf of Training For Success, current student
Denise O’Connell said, “When I was at school, all they saw was
my epilepsy and not my potential and I wasn’t given a chance.
Being on TFS was the first opportunity I had to be treated
as a unique individual. I now intend to do a degree in Event
Management and plan to set up my own business.”
Paul Sharkey, Epilepsy Ireland’s Training & Communications
Manager said “the award is a mark of recognition for the
commitment of TFS staff Honor and Maire and all the 180
Honor Broderick, TFS Programme Manager said, “We’re thrilled,
just delighted. The award is a marvellous validation of the
course and IT Sligo’s very progressive decision to embrace it. It’s
a wonderful boost too for Epilepsy Ireland and for FAS, which
funds the course.”
Training For Success is currently recruiting for its 20132014 term. If you are interested in finding out more about
the course, please contact Programme Manager Honor
Broderick or Programme Facilitator Maire Tansey at 071 –
9155303.
“This course is very good because it builds your self-confidence.
It also teaches you about your own epilepsy, which I found
helpful because I wasn’t entirely sure what it was. It also gets
you thinking about the future and what it is you want. I hadn’t
a clue - I was changing my mind all the time! Now I know, I have
decided to pursue a career in the fitness industry, and that is
thanks to TFS”.
TJ Butler, current TFS Student
http://bit.ly/ZBU6S0
3
News from around the world
Obama announces plan to map
the brain
Calling Artists with Epilepsy
The US-based Epilepsy Therapy Project
and the Epilepsy Foundation are inviting
artists from around the world who have
epilepsy to participate in the Hidden
Truths, The Mind Unraveled art show.
Selected pieces will be featured and
offered for sale in October at the Susan
Nelson Gallery in Newport Beach,
California. The deadline for submissions is
June 1 and there is no entry fee.
hoped that this work will help doctors
determine which of their patients would
benefit most from non-drug therapies
such as brain surgery.
http://bit.ly/1579oas
5,000 neurology patients wait
longer than a year
www.epilepsy.com/hiddentruths.
Challenging stigma in the UK
UK charity Epilepsy Society have
announced results of a new study on
public perceptions of epilepsy. The study
is the exact same as one conducted in
2003 and has concluded that not much
has changed in ten years in terms of
public awareness of epilepsy. The results
echo the findings of Epilepsy Ireland’s
recent study (see page 6) with many of
the usual myths and misunderstandings
around the nature of epilepsy and first aid
still evident.
http://bit.ly/11k0Tmb
Major Canadian investment in
epilepsy research
A team of researchers in Montreal,
Canada have been awarded a $10.8
million research grant to conduct a fouryear study to develop a personalised
medicine approach to early diagnosis
of drug-resistant epilepsy. The team will
work on identifying genetic changes
that predispose people to epilepsy and
also changes that predict the individual’s
response to various anti-epileptic drugs.
By rapidly identifying patients who will
not benefit from existing drugs, it is
4
Epilepsy Ireland representatives Carol
Saarsteiner, Peter Murphy and Wendy
Crampton at Leinster House recently with the
NAI to highlight neurology waiting lists.
Information obtained by the Neurological
Alliance of Ireland (NAI) following a
Freedom of Information request show
that a total of 5,580 adult and child
patients with conditions such as epilepsy,
Parkinson’s, multiple sclerosis and severe
migraine have been waiting over a year
for an outpatient appointment. Over
1,000 patients have been waiting for
more than four years. NAI Chairman Chris
Macey said this equates to “suffering on
a monumental scale in every town and
parish the length and breadth of Ireland ,
much of it avoidable”.
http://bit.ly/ZgCRH4
The BRAIN Initiative is a proposed
research initiative announced by the
Obama administration in April with the
goal of mapping the activity of every
neuron in the human brain. Intended to
“help researchers find new ways to treat,
cure, and even prevent brain disorders,
such as Alzheimer’s disease, epilepsy, and
traumatic brain injury”, the initiative will
cost more than $300 million a year for
10 years. In welcoming the initiative, the
Epilepsy Foundation noted that while the
US currently spends $30 billion annually
on medical research, just ½ of 1% is spent
on epilepsy.
http://1.usa.gov/16tBd9I
Valproate in pregnancy tied to
autism risk
Women who take the epilepsy drug
valproate during pregnancy are three
times more likely to have a child with
an autism spectrum disorder, according
to new Danish research published in
the Journal of the American Medical
Association which analysed over 650,000
children born between 1996 and 2006.
Previous studies have found more birth
defects and lower intelligence among
children of mothers who took valproate in
pregnancy. “Valproate is an effective drug,
but it appears that it is being prescribed
for women of childbearing potential
at a rate that does not fully consider
the ratio of benefits to risks,” wrote Dr.
Kimford Meador and David Loring in an
accompanying editorial.
http://bit.ly/11LEoFo
New anti-epilptic compounds
identified
Researchers at the University of
Sheffield may have discovered up to 46
compounds with previously unknown
anticonvulsant properties. Many of
these molecules are already used to treat
infectious, psychiatric and inflammatory
disorders and are now being regarded
as starting points for new research in
the development of additional epilepsy
drugs. The compounds concerned were
shown in the study to suppress seizures in
zebrafish.
http://bit.ly/170JMtQ
HSE to open Epilepsy Monitoring Units
By Peter Murphy, Epilepsy Ireland
Deputy CEO
Left: Grainne O’Connor from Cork, whose story
helped keep the EMU closures in the spotlight.
At the time of writing, Grainne was being
assessed in London having being initially
turned down by the HSE for treatment abroad
on the basis that “appropriate services” were
available in Ireland.
Right: Yvonne Brennan,
who has been turned
down twice for treatment
abroad.
Left: Examiner journalist Catherine
Shanahan shows Health Minister
James Reilly a photograph of Yvonne
Brennan during a media conference.
The photo shows Yvonne’s facial
injuries sustained as a result of her
epilepsy.
Above: Miriam O’Byrne from Dublin,
awaiting pre-surgical evaluation and
monitoring at Beaumont for over a year
It may seem entirely illogical that the HSE
could spend almost €1m in kitting out
two state-of-the-art Epilepsy Monitoring
Units in Cork and Dublin, yet refuse to
open either of them, but when it comes
to the health service, logic does not
always seem to prevail.
Units would be prioritised and that the
necessary staff would be recruited.
The most recent correspondence
received by Epilepsy Ireland from Minister
Reilly (April 10th) assures us that “I am
advised by the HSE that, having secured
recruitment approval from the National
As we get ready to welcome the summer Control Group, Beaumont is progressing
months, the redeveloped four-bed unit in the recruitment of the posts necessary to
Beaumont and the new 2-bed unit in Cork support the service development. With
University Hospital remain closed. They’ve regard to Cork, the HSE has advised that
been closed since last autumn due to the it is the intention of the Cork University
Hospital management to open the EMU
HSE’s recruitment moratorium which has
in Quarter 3 of this year and this will be
prevented the hiring of the five nursing
included in the HSE South’s 2013 Regional
personnel and three EEG technicians
Service Plan.”
needed in each location to provide a
round-the-clock inpatient service.
As things stand, we still have no
Earlier this year, with waiting lists
exceeding 200, it took, as it often does
in Ireland, public outcry and political
pressure to force movement on an issue
that most would regard as common
sense.
Thanks only to the co-ordinated efforts
of people with epilepsy, medical
professionals and Epilepsy Ireland
speaking out; a small number of
sympathetic journalists who refused to let
the story drop and a band of supportive
TDs and Senators, the HSE (finally)
announced that the opening of the
functioning monitoring service in the
country to serve the needs of those who
have difficult-to-diagnose epilepsy or
those being considered for surgery.
A solution may well be on the way, but
that should not take attention from what
has been a wholly unacceptable situation
for people with epilepsy, especially those
awaiting monitoring who continue to
experience unnecessary seizures that
could be manageable. At a time when
the voice of the epilepsy community has
been ignored on the generic substitution
issue (see page 12), we have to wonder
what will be next.
There have been some significant
improvements in the Irish epilepsy
service in recent times, in particular
the appointment or forthcoming
appointment of 20 new candidate
Advanced Nurse Practitioners in
Epilepsy through the National Clinical
Care programme. While this should be
acknowledged, scenarios like the EMU
fiasco threaten to undermine all the
progress that has been made.
Epilepsy Ireland continues to watch the
situation closely and while we hope that
no further campaigning will be needed to
get both Units open as per the Minister’s
schedule, we’re still not holding our
breath.
Thank You
Epilepsy Ireland would like to
thank everyone who has lent their
voice to the EMU campaign so far,
in particular Grainne O’Connor,
Yvonne Brennan, Catherine
O’Malley, Annette Murphy, Miriam
O’Brien and others who “went
public” with their own stories. A
big thank you also to Catherine
Shanahan of the Irish Examiner, to
RTE Primetime and to TV3’s Ireland
AM programme for continuing to
highlight the issue.
5
Epilepsy Knowledge and Attitudes Survey
Conducted by Amárach Research for
Epilepsy Ireland
In January, Amárach Research conducted
a study on epilepsy knowledge and
attitudes on behalf of Epilepsy Ireland.
Over 1,000 members of the public
answered the questionnaire with quotas
set on gender, age, social class and
geographical region.
The findings, which were used to help
raise awareness of epilepsy for European
Epilepsy Day on February 11th, reveal
that significant misunderstanding persists
among the public in relation to epilepsy.
It also found that misunderstanding was
generally more prevalent in younger age
categories, in men and in Dublin.
Knowledge of Epilepsy
Almost half (45%) of the Irish population
knows someone who has epilepsy.
38% of people have witnessed a seizure.
Those who know someone with epilepsy
are three times more likely to have
witnessed a seizure.
Almost half (43%) believe that almost all
seizures involve falling on the ground in
convulsions (i.e. tonic-clonic seizures).
38% of people knew that this is not the
case.
While 86% of people are aware that
epilepsy is not contagious, 7% of people
think that epilepsy can be “caught” from
another person and a further 7% are
unsure. Men, people in the 25-34 age
category and those living in Dublin were
most likely to believe this myth.
Over 70% of people think that the
majority of people who have epilepsy
must avoid flashing/flickering lights. Only
6
12% of respondents knew this to be
untrue. Those in the 25-34 age category
were the least likely to answer correctly.
Attitudes to Epilepsy
Almost 1 in 5 people (19%) said they
would not employ a person with epilepsy,
while 63% said that epilepsy would not
be a factor. Those who know someone
with epilepsy were more likely to employ
someone with epilepsy.
50% of respondents believe that a
negative stigma is attached to those who
have epilepsy. Men and respondents who
know someone with epilepsy were more
likely to attribute stigma to epilepsy.
Responding to a seizure
43% of people say that they would know
what to do if they saw someone having a
seizure. Those who know someone with
epilepsy were twice as likely to say they
knew what they should do.
56% of people were aware that not all
seizures require immediate medical
attention. Younger age groups and
respondents living in Dublin are
significantly more likely to believe that
all seizures require medical attention.
59% of respondents said they would
automatically call an ambulance.
Over half (51%) of respondents would
place something in a person’s mouth
during a seizure to prevent them from
swallowing their tongue. Less than 1 in
3 people knew that this was the wrong
thing to do. Men and respondents aged
over 55 years old were more likely to
believe the myth.
Almost 1 in 10 people believed that
throwing water on a person’s face
in an effort to stop a seizure was a
recommended intervention.
Men and younger age-groups were more
likely to believe this.
Almost 1 in 5 (18%) respondents would
restrain a person’s movements if they
were having a seizure. 59% of people
knew that this is the wrong thing to do.
Women and older people were more
likely to know not to restrain a person.
90% of people say that they would stay
with a person having a seizure until the
seizure was over.
Full survey results:
http://bit.ly/ZXtPyL
Seizure Aware microsite:
www.epilepsy.ie/go/seizureaware
“Despite the fact that epilepsy is the
most common serious neurological
condition in Ireland, public
awareness and understanding
of the condition remains poor.
Negative attitudes towards epilepsy
are a major challenge for many
people living with the condition,
often causing more distress than the
actual seizures.”
Peter Murphy, Deputy CEO,
Epilepsy Ireland
“You cannot stop someone having
a seizure but we all have a duty to
know what to do when you witness
someone you know or not, having a
seizure. The lack of understanding
shown in this research could put the
person having the seizure in real
danger.”
Sinead Murphy, Community
Epilepsy Nurse Specialist
Look back at European Epilepsy Day
Thank you to all the families who took part in the
EED photocall.
Epilepsy poster proudly displayed at
Huntstown Pharmacy by Rachel Ashe.
Epilepsy Ireland’s Niamh Jones with Cork
Lord Mayor, Cllr John Buttimer (l) and Jerry
Buttimer TD (r).
Epilepsy Ireland members with Deputy Lord
Mayor of Dublin Clare Byrne at the EED coffee
morning in Dublin.
Thank You
Roses for the Rose on Valentine’s Day.
The 3rd annual European Epilepsy Day
(EED) took place on February 11th, with
awareness activities taking place all over
the continent. Epilepsy Ireland chose
to highlight the common myths and
misunderstandings that still exist around
epilepsy, while also highlighting our new
name and promoting the “text-to-donate”
fundraising initiative.
The Epilepsy Knowledge & Attitudes
survey (see Page 6) was a valuable tool in
securing a huge amount of coverage in
national newspapers, radio and TV as well
as online.
The Rose of Tralee Nicola McEvoy lent
herself to the campaign by voicing one
of our radio ads and by featuring in the
launch photocall alongside five young
members and their parents. Rick O’Shea
voiced additional ads which were played
over 400 times on national and local radio,
highlighting the new text-to-donate
campaign. Newspapers including the
Irish Times, Irish Examiner, Irish Sun, Daily
Mail, Irish Mirror, Sunday World and Metro
all donated advertising space to the
campaign totalling over €80,000. Other
advertising took place on the DART and
online.
Dr Donal Fitzsimons, Regional Disability
Services HSE and Marcella Corcoran Kennedy
TD with Epilepsy Ireland’s Margaret Bassett on
EED.
The epilepsy.ie site received an overhaul,
as did the Seizure Aware microsite.
February 11th broke the site’s busiest day
record and almost 4,000 people visited
the site during the campaign. Epilepsy
awareness videos were watched almost
2,000 times, new followers flocked to
twitter and almost half a million people
were “reached” on Facebook.
A new Epilepsy Awareness poster was
launched (see enclosed) and members
are encouraged to display the poster
in a public place, such as at your local
pharmacy.
The text campaign was also a success,
with almost 1,500 texts received to date
supporting epilepsy research. Events
were held around the country for EED,
including in Dublin, Cork, Dundalk and
Tullamore. Overall, a very successful
Spring 2013 for raising epilepsy
awareness.
European Epilepsy Day is a real team
effort and we would sincerely like to
thank:
• Twins Hanna & Emma Boughton and
their mum Tracy who were at the
forefront of all our EED activities this
year
• Leeson Egan, Maria-Carty-Mole, Katie
Kelly, Garry Murphy and Niamh Hegarty
who featured in our EED awareness
video
• Our growing legion of media volunteers
• Young members Conor Weldon, Sadbh
Mechan, Josh Bollard and their parents
who took part in the photoshoot.
• Rick O’Shea, for his unending
commitment to keeping epilepsy in the
public spotlight
• All the suppliers who waived or
reduced their rates to make EED
happen - HAVAS, Red Diamond Media,
Amarach Research, Vizeum, What Box?
Creative, Design By Lucia and Jane
Curtin Communications
• The Epilepsy Awareness Committee
(see page 19)
• The Rose of Tralee Nicola McEvoy and
the Festival organisers
• Everyone who supported the textappeal or who spread the message on
February 11th
7
Freddie and his Epilepsy
By John Verling, Tralee, Co Kerry
“Until One Works”
Freddie had EEGs, CAT scans, MRIs all
showing a perfectly functioning brain.
Eventually some slight seizure activity
showed up on an EEG, the seizure activity
type associated with generalised epilepsy
and so the diagnosis became intractable,
generalised epilepsy. Different antiepileptic drugs were tried, all to no avail
or a least with only limited success. These
AEDs take months to get into the system;
you have to increase your dose slowly to
a therapeutic level and if not successful,
take months again to wean the patient
off. Once I asked his neurologist how
many drugs are we going to try? She
pointed to a wallchart listing all the
current ones and said ‘until one works’.
John Verling is a writer and
maker of radio documentaries
and features. He is also a Dad to
three children including Freddie
(9) who has epilepsy.
A Corkman, living in Kerry, John
writes a weekly article at www.
verlingsweek.com about dealing
with everyday events and
Freddie’s epilepsy.
Nearly 40,000 people in Ireland have
epilepsy in some form or other. That is
a lot of people. Some are born with it;
some acquire it through brain damage, in
others it develops for no reason, usually in
the teenage years.
My son, Freddie, had his first seizure when
he was only nine months old and he has
been living with it ever since. That first
night, a typical mid-November one, will
always live in our memories. Our panic
at not knowing what was happening,
wishing it to stop, waiting for the doctor,
all at 4am in the morning. The doctor, as
did the hospital, put it down to febrile
convulsions, a condition not unusual
in babies when in a high temperature,
but as he got older he started having
more. Subsequent tests showed nothing
unusual in his brain activity but yet every
three or so months we’d be back in the
8
hospital. By then we’d been prescribed
Diazepam to stop the seizure and Epilim
to try prevent one, easing our fears a little
but we knew something just wasn’t right.
With any child you wait and see if they
grow out of it… As the body and brain
develops will they get stronger, putting
such things behind them? As Freddie
got older he didn’t, the seizures only
got worse and more frequent. In typical
bad luck, he had what is known as
intractable epilepsy, one of the few who
don’t respond to seizure medication
and really have their life curtailed. His
epilepsy was presenting as tonic clonic
seizures, the full-blown fall to the ground,
body shaking and all four limbs jerking
uncontrollably, type of seizure. The worst
kind. He could have them any time of the
day or night, standing walking or sitting.
They started happening as he was going
to sleep or as he woke in the morning.
School became impossible, as he’d keel
over on running around or in great
excitement. It wasn’t fair on him or the
school to have to deal with it.
In August 2011, his epilepsy took a turn
for the worse. Freddie had developed
clusters earlier in the year. Clustering is
when you have a seizure, you then have
another and another and another till
the anti-seizure medication stops them.
However, one evening in August they
couldn’t be stopped, Freddie went into
status epilepticus, a state that seizures
don’t respond to the drugs, they just
keep happening. It’s a very dangerous, life
threatening stage. That evening and into
the night the bad cluster continued…full
tonic clonic seizures, about twenty-one
in total. Freddie wouldn’t give up that
night. Though he had to go into ICU at
8am, to have a very strong dose of an AED
administered, he was awake within an
hour. Drugged and doped, but ready for
the world. By lunchtime, he was back on
the ward eating plain chicken for lunch.
At the time, we were trying the Modified
Aitkins Diet for seizure control. No carbs,
only fats and protein but again only
with limited success, we stopped it that
September.
“We moved from Dingle
to Tralee to be closer
to the Hospital in
emergencies.
We moved house three
times between September
2011 to June 2012”
Epilepsy Takes Over
The remainder of August, then into
September was spent in and out of
hospitals. Tralee General and CUH were
only excellent to us. Freddie was weaned
off Epilim and Tegretol was introduced
beside the Topamax and Keppra, which
he was already on. Combined with the
Frisium, which he was also put on to
try prevent nocturnal seizures, he now
had four AEDs in his system. On advice
from our neurologist, we moved from
Dingle to Tralee, so as to be closer to
Kerry General Hospital in emergencies.
In the end, we moved house three times
from September 2011 to June 2012.
How my wife, Lisa, managed all this, I’ll
never know. When he wasn’t in hospital
by appointment, Freddie was there in a
cluster. Almost weekly we were rushing in
to hospital, now only five minutes down
the road, usually with Freddie seizing in
the back of the car.
Lisa wasn’t taking this anymore, she
knew there had to be some way out,
some solution had to be found. Our
paediatrician, Doctor Leahy, couldn’t
believe that his epilepsy didn’t start
somewhere, that some part of the
brain wasn’t misfiring first. Find that, he
believed and we maybe could find how
to stop it. Lisa pushed for and with the
great help of my friend Brian McNamara,
we got video telemetry done on Freddie.
Video telemetry is an EEG, done when in
a seizure and videoed so better analysis
can be done. The sensors are glued to
the head and you’re wired to the EEG
machine 24/7. In November 2011 the
two took up residency in CUH waiting
for some action. After a couple of failed
attempts, they eventually captured
Freddie in seizure. Nine times that night
he performed for the camera. Nine times!
If they couldn’t get anything from that
what more could he do?
epilepsy to frontal lobe epilepsy. She was
smiling too, after six years we were finally
getting somewhere.
scan. He also had neuropsychological
assessment, to determine where he is in
his development.
Despite the improvements, we were still
regulars on the Cashel Ward at KGH. The
seizures were still happening, as was the
clustering. The staff looked after us with
such care that even now I well up when
thinking of it. They knew the drill and
were always ready for us. Admit Freddie,
settle him, get a line put in and on the
third seizure give him Lorazepam.
A big meeting was scheduled for late
February. The results of all the diagnostics
done by the Temple Street team were
ready. Was surgery really an option?
We knew this meeting was to be the
biggest in our lives. Freddie’s future was
dependent on it; we got the news we
wanted. Freddie is a candidate for surgery
but much needs to be done to prove it to
a surgical team. This work is ongoing at
the moment but for the first time in years
we have real hope.
The neurologist was hoping for surgery
but more detailed analysis of his
telemetry results, would have to be done.
Then in January last year, she told us the
news we’d been waiting for… Freddie
“We knew this meeting
was to be the biggest in
our lives. Freddie’s future
was dependent on it.
Was surgery really an
option?”
was possibly a candidate for surgery.
However, we needed to do more tests,
to confirm that he was indeed suitable
for surgery. A PET scan was to be the
next neurological device to try catching
the misfiring neurons in Freddie’s brain.
Eventually, after much waiting and many,
many phone calls, Freddie had the scan
in October 2012, at the brand new unit in
CUH. Ironically, after six months of waiting
for the scan we actually had the results
within two days. That scan was reported
as clear… still no sign of the actual point
of where the seizure starts...
A Starting Point
We were devastated but Lisa wasn’t
giving up. More telemetry was done to
confirm what had been discovered on
previous scans. Surely we had a case?
The next day Brian called me to say
something had been found, a starting
point. It looked like his seizures were
misfiring from a faulty neuron in the
frontal lobe. Almost at the same time as
Brian was on the phone to me, Freddie’s
neurologist was paying Lisa and Freddie
a visit on the ward. She confirmed the
findings and we had a new diagnosis,
Freddie went from having generalised
This January we were called for a consult
with Dr Shahwan in Temple Street. Luckily
Brian McNamara in CUH had sent him
a DVD of Freddie’s case. Dr Shahwan
loves scans, EEGs are his speciality. He
reviewed Freddie’s case history in detail
and wanted his own set of scans. So
for January and February we travelled
to Temple Street and Fred had yet
more video telemetry and another PET
Freddie is going back to school next
week. Under the guidance of Cathy
Madigan, Neuropsychologist at Temple
Street, we are in a program of reintegration to normal living for Freddie.
Trips to the beach, walks or shopping
are back on, slowly but surely we’re
beginning on a path to an ordinary life.
The support of the Neurological team at
Temple Street makes us feel we are not
alone.
One hell of a kid
Now Fred is on Tegretol and Rivitrol; the
Tegretol, at an increased dose, began to
stop the clusters. In May last year, Freddie
stopped having three seizures in an hour,
the trigger for a trip to KGH. Freddie’s
current cycle has him on a seizure
every five days or so, but with reduced
clustering. We tried adding Vimpat to his
mix of drugs; it didn’t work though and
after six weeks we took him off it. We tried
Epanutin, but dropped it after six days, it
made Freddie worse…now the recently
added small daily dose of Rivitrol seems
to be helping.
Recently we had a sixteen day
seizure free break...
Our family is still living in Tralee and even
though the hospital visits have decreased,
one is always just around the corner. He
still can’t be left alone, can’t really play
outside, can’t lead the normal life of a kid,
can’t do anything that could put him in
danger. But he gets on with it, is full of fun
and games, nothing fazes him.
He doesn’t know it but Freddie is one hell
of a kid.
www.verlingsweek.com
9
International Journalism Award for Midlands 103
work and history of the organisation and what it is like to live
with epilepsy.
In their decision, the judges said the show made a significant
contribution to the understanding of epilepsy.
The Award is made annually since 2009 by the International
Bureau for Epilepsy and the biopharmaceutical company UCB in
print, broadcast and online categories. It is open to all journalists
worldwide and is judged by an international panel of experts.
It aims to raise awareness about epilepsy globally, recognising
journalists who have excelled in reporting compelling and
informed stories that engage the audience on what is an often
misunderstood condition.
Participants in ‘The Parish’ radio documentary with producer &
presenter Kieran Feeney, mic in hand.
Congratulations from Epilepsy Ireland to Kieran Feeney and all
at Midlands 103fm, whose documentary on epilepsy ‘The Parish’
has scooped top honours at the 2012 International Excellence in
Epilepsy Journalism Awards (Radio category).
The programme was produced and presented by Kieran Feeney
and focused on life with epilepsy in the Midlands. Epilepsy
Ireland’s Community Resource Officer Margaret Bassett and a
local members Ann Kinahan, Barbara Mitchell, Theresa Carter
and Sarah Shorthall took part in the show which explored the
This is the third time that an Irish production has won an award.
In 2010 Niamh Maher, the producer of the RTE documentary
“This is Me” was announced as the winner in the broadcast
section. Birthe Tønseth was the 2011 winner in the broadcast
category for her programme “Life with Epilepsy” also broadcast
on RTÉ One.
Other awards this year went to Scotland, Finland and Australia.
Congratulations to Kieran, to Margaret and to all the Epilepsy
Ireland members who took part in the documentary for all they
have done to improve epilepsy awareness in the Midlands and
now worldwide!
Listen to the programme at http://bit.ly/14RmmYC
Epilepsy Ireland National Conference 2013
Exploring Epilepsy – Health and Lifestyle Choices
Tullamore Court Hotel,
Tullamore, Co Offaly.
Saturday 21st September
For people with epilepsy, their families &
carers and for professionals working with
people with epilepsy.
Keynote speaker:
Dr. Peter Widdess-Walsh, Consultant Neurologist.
Further details of speakers, workshops and exhibitors to be
announced soon on epilepsy.ie and our Facebook page.
Topics will include stress management, mindfulness, epilepsy
& relationships, the ketogenic diet, epilepsy & memory, VNS &
epilepsy surgery, specialist nurse appointments.
Bookings:
Special Early Bird rates: €20 for Epilepsy Ireland members / €30
for non-members.
10
To avail of the Early Bird rate, simply book your place before June
30th.
Regular rates: €30 for Epilepsy Ireland members / €40 for nonmembers.
Conference fee includes morning refreshments, lunch and
conference pack.
Reserve your place by calling us at
01 4557500 or visit the online
store at www.epilepsy.ie
Yay or Nay? Disclosing your epilepsy
In every issue Maria Carty-Mole,
professional ponderer, will debate
a motion relevant to the world of
living with epilepsy. In this issue,
Maria contemplates one of the
most frequently asked questions
of all - should you mention your
epilepsy in a job interview?
This one shouldn’t even be a question to
contemplate. Of course you can mention
your epilepsy in an interview if you want
to! It’s part of who you are, just like your
favourite colour, and it should have no
influence at all on whether or not you are
going to be employed.
Unfortunately that’s fantasy. If a potential
employer has misconceptions about
epilepsy, or lacks knowledge on it, he
or she may discriminate against the
condition. Despite the fact that epilepsy
is quite common – over 37,000 people in
Ireland have it – there can still be a sense
of fear surrounding it. Epilepsy Ireland
carried out a survey of 1,000 adults and
released the results on European Epilepsy
Day. They revealed that a shocking one in
five people would not employ someone if
they knew they had epilepsy. After all, it IS
contagious...right?
Surely you don’t want to work for that
20% of the population anyway. But most
of us can’t afford to be so picky. Some
feel that the stress of having to disclose
their epilepsy can damage their interview
performance. Therefore you may be
tempted to go to an interview, praise your
favourite colour and when it comes to
epilepsy, stay quiet.
But is it legal to do so? Where do you
stand by law? Nobody likes getting
sacked, and being taken to court is only
exciting the first couple of times. Luckily,
in an ordinary interview you are not
legally obliged to volunteer the fact that
you have epilepsy, and your potential
employer is not allowed to ask you if you
have it. This is because it comes under
the title ‘disability’, which according to
the Employment Equality Acts 1998-2011
is one of the nine grounds (along with
age, race, religion and so on) on which
you cannot be directly or indirectly
discriminated. If you have a medical
interrogation, that is when you have to
tell. But medicals are usually post-offer
anyway and if an offer has been made
‘subject to medical’, they can’t then take
it back once they discover that you have
epilepsy.
Consequently, making a good impression
in the job for a few days/weeks, proving
ourselves to be a reliable and capable
employee, and then mentioning it to
the boss, is always a favourite tactic.
This might work – if you don’t get
seizures often. A couple of years ago I
was having a complex partial seizure
every three weeks or so and I chose to
try this method. I didn’t mention it in
the interview, and when I got the job I
decided to plough my way through a
single day, make friends with them all
and then tell on day two. The medical
ID bracelet was left at home, I was
succeeding, I finally made it to 5:25pm…
and then suddenly I woke up from a full
tonic clonic. Damn, I was so close! My
new colleagues were shocked, and all the
bosses went on a First Aid course shortly
afterwards. They didn’t sack me though!
When they hear that you withheld such
information some may feel that you were
dishonest, and your relationship may get
off to an unstable start. It may affect your
ability to claim sick pay. If your epilepsy
is active, then they’re going to find out
eventually anyway, so it’s probably best
for health and safety reasons that you
explain to them face-to-face what should
be done, and definitely if having a seizure
in the work environment compromises
your safety or the safety of others. Plus
keeping it quiet does of course make
it seem as if it is something of which
you should be ashamed. If you present
it casually, bursting with confidence,
no big deal, then they’ll see it that way
too. You can even show them support
documentation from your medical
team explaining how perfect you are for
the job. But whether you do so in the
interview or during your second week
there…that’s your call.
Join the conversation and vote Yay or Nay
in the poll on our Facebook Page
www.facebook.com/epilepsy.ie
Yay or Nay…what do you say?
For:
“It always is a good idea. Companies
cannot discriminate against
conditions…by mentioning it as
early as possible, they will make
accommodations for sickness due to
either seizures or stress.”
Paul
“I think you should mention epilepsy at
job interviews. Why should you have to
hide it?”
Anon
Against:
“There is no reason to do so if you
feel it may compromise your chances
of getting a job offer. Do you think a
diabetic should mention their condition
at interview stage?”
Ronan
“The only time epilepsy should impact
on getting a job would be if you were
suffering them too regularly to be
able to perform the job. I haven’t had
anything for 5 years, so I wouldn’t be
telling anyone.”
Triona
contact corner
A mum of a 13 year old girl with
epilepsy has been in touch and she
and her child would like to link up
with another parent & child around
the same age for a general chat
about school, and learning to deal
with epilepsy & seizures
Mum of a 6½ year old boy who has
absence seizures, recommended
treatment being Ethosuximide,
would like to hear from other parents
who may be able to provide insight
into what to be aware of before
starting this medication and the
possible side effects.
Contact Geraldine at 01 4557500
11
Generic Substitution in epilepsy – Accept No Substitute
Anti-epileptic drugs – Example brands and generic versions
Brand Name * Generic Name/
Active substance
Example generic versions ¥
Lamictal
Lamotrigine
Larig, Lamoro,
Lamotrigine Aurobindo
Keppra
Levetiracetam
Levetiracetam Clonmel, Levetiracetam
Aurobindo, Levetiracetam Bluefish
Epilim
Sodium Valproate
Sodium Valproate, Valproat (not
currently marketed)
Neurontin
Gabapentin
Gabin, Neurostil, Gabitril,
Gabapentin Teva
Topamax
Topiramate
Topirama, Topit
Tegretol
Carbamazepine
Gericarb (not currently marketed)
Rivotril
Clonazepam
Clonazepam
* This list is just a selection of AEDs and is not exhaustive
¥ Note that the list of generic versions is intended only as a sample of authorised generic versions
and is subject to change over time.
The Health (Pricing & Supply of Medical Goods) Bill will very
soon become law, introducing a system of generic substitution.
Despite an intensive campaign by Epilepsy Ireland, the
Government has not agreed to make a specific exemption to
exclude anti-epileptic drugs (AEDs). This article outlines again
the main issues around generic substitution of AEDs and more
importantly, outlines what you should now do in order to stay
safe. More information can be found at www.epilepsy.ie
What is Generic Substitution?
Generic substitution is a system that will allow pharmacists to
dispense a different version of a particular medicine, even when
a specific brand has been prescribed.
Brands v. Generics
A branded drug is a drug that is or has been protected by a
patent. It can be produced and sold only by the company
holding the patent. A generic drug is one that is similar to the
original, brand-name medicine, and contains the same active
substances but it will have a different (but often similar) name.
Generic versions of branded drugs can be made by other drug
companies once the patent on the branded drug expires. The
price of generics are usually lower and they may have different
colours, flavours or non-active substances. They may also be a
different shape, size and packaging.
What will happen under the new system?
in an otherwise avoidable breakthrough seizure. Switching
from a brand to a generic AED is not recommended and
switching between different generic versions presents even
bigger problems. These safety concerns have been highlighted
in studies and in many countries, substitution of AEDs is not
allowed. Epilepsy Ireland has met with Minister Alex White
and presented to the Joint Oireachtas Committee on Health,
highlighting international practice, published evidence and
expert opinion supporting an exemption in Ireland. However
the Government has rejected our appeals.
What happens next?
The challenge now is to ensure that the Irish Medicines Board
do not designate AEDs as interchangeable. Meanwhile, Epilepsy
Ireland will work to educate people with epilepsy about staying
safe while also working with doctors and pharmacists to ensure
they understand the special case of AEDs. Unfortunately we
have received many reports of AED substitution already taking
place even before the Bill has been passed, in some cases with
negative outcomes for the people concerned. For this reason,
we urge you to follow the guide (on page 13) to make sure that
you stay safe.
Generic Substitution section at epilepsy.ie: http://bit.ly/VjgWl7
Dail Debate: http://bit.ly/132Xw5G
The Irish Medicines Board (IMB) will be responsible for
developing lists of medicines that are ‘interchangeable’. Only
drugs that the IMB deems interchangeable can be legally
substituted and substitution of a particular drug cannot take
place until the IMB permit it. For drugs that are designated as
interchangeable, pharmacists will be obliged to dispense the
cheapest generic version of that drug that they have in stock on
that particular day.
The problem with generic substitution of AEDs
For most classes of drugs (not including AEDs), generic
substitution is considered safe. However, AEDs are different to
other drugs in that they have a “narrow therapeutic range” and
any variation in their manufacture and composition may result
12
Peter Murphy & Mike Glynn (Epilepsy Ireland) and Peter Widdess Walsh,
Consultant Neurologist presented on the dangers of generic substitution
of AEDs at the Joint Oireachtas Committee on Health in March
Accept No Substitute – Your Guide to Staying Safe
Step 1.
Step 2.
Step 3.
Be informed
At your doctor
At your pharmacy
See www.epilepsy.ie for all you
need to know
Insist that your prescriber writes
your AED prescription using your
regular Brand name, not the
Generic name.
Check your medications
immediately to ensure that they are
exactly the same as the ones you
received last time.
Insist that your prescriber handwrites “do not substitute” beside
the name of your AEDs each time
s/he writes your prescription.
Unless your doctor/ nurse prescriber
has prescribed you with an entirely
new drug or changed your dosage,
you should continue to receive the
exact same medications every month.
It may be helpful to keep last month’s
packaging to help you compare.
Remember that if you have followed
step 2, your pharmacist can under no
circumstances offer you a different
version of your AED.
Other recommendations:
Inform your pharmacist about the
dangers of substituting AEDs. Not every
pharmacist will be fully aware of the
situation and many people with epilepsy
will not be as informed as you! Your input
may protect the safety of someone else in
your area who has epilepsy.
If your pharmacist understands the
issues and is providing you with good
care and service, then return to the
same pharmacy each month. Changing
pharmacies regularly may increase
the likelihood of your drugs being
inappropriately substituted.
These are the two crucial things you
must do. Cut out the reminder card
below and keep it in your wallet if you
think you may not remember what to
say. The law permits your prescriber
(doctor or nurse prescriber) to write
“do not substitute” on a prescription if
substitution should not take place for
clinical reasons. If both these steps are
followed, then your pharmacist cannot
legally substitute your drug.
Please let us know if your pharmacist
attempts to substitute your AEDs.
Your memory aid
Cut out the card (below, right) and
keep it in your wallet for the next
time you visit your prescriber.
It may help you remember what
you need to say.
National Epilepsy Week – Public information evening
Generic Substitution in Epilepsy:
Accept No Substitute
Thursday 23rd May
Alexander Hotel, Fenian St/ Merrion Square, Dublin 2
6.30pm – 8pm
Speakers:
• Professor Norman Delanty, Director of the Epilepsy Programme,
Beaumont Hospital
Prof. Delanty will explain all you need to know about how
your epilepsy medications work and why they should not be
substituted.
• Mike Glynn, Epilepsy Ireland CEO
Mike will outline what the new legislation means and what you
now need to do in order to stay safe.
Followed by Questions & Answers session
Light refreshments provided
No charge to attend
Numbers are limited so please let us know if you plan to
attend by calling 01 4557500 or emailing [email protected].
Cut out and keep in your wallet.
Dear Prescriber,
Please write my AED prescription
using my regular Brand name.
Please hand write “do not substitute”
beside each AED on my prescription.
www.epilepsy.ie Tel: 01 4557500
13
‘falling’ by peter sirr
Epilepsy. Grand mal. Petit mal. Tonicclonic. I had left my twenties before a
neurologist put on paper the words
I’d always known about but never
confronted. The words in one sense
were soothing because they told me
that my fate was shared and inhabited
its own little shelf in the great library of
authoritative facts. To have something
undiagnosed or undiagnosable is
much more traumatic – as in the early
years of my father’s illness, with their
vague diagnoses and the neurological
speculation that finally, if not definitely,
settled on multiple sclerosis.
With the certainty conveyed in my
specialist’s letter came a new prescription
and a series of lifestyle recommendations.
‘I know you literary types,’ the neurologist
told me. ‘Out all night drinking in the Arts
Club.’ I had never darkened the door of
the Arts Club, but I got the picture. Yet
for all the reassurance that came with the
formal diagnosis of the condition I’d been
living with for the previous twenty years,
I still felt still oddly detached from it. I’m
sure my detachment and incuriosity is
bound up with my childhood experience
of the medical system: I distrusted
my own epilepsy as much as that first
neurologist did. It may also have been an
internalization of some residual shame or
embarrassment at what was – not least
because of centuries, even millennia,
of misinformation – a little-understood
condition. For years I directed a buried
anger against it, but also against hospitals,
the medical system. I still get angry when
I think how few neurologists there are
in this country: fewer than twenty-five.
Epilepsy is easily treated, but a sufferer,
even with private insurance, can wait up
to two years for an appointment with a
neurologist, nine months for an MRI scan,
anything between two months and two
years for an EEG. For someone who is just
beginning to realize that they may have
epilepsy, the medical provision available
in Ireland is no better now than it was
forty years ago when I began my own
career of falling.
The health system’s shortcomings apart,
I certainly spent a good deal of my
life acting as though my body and my
emotions belonged to someone else –
this is part of the comedy of maleness.
But now information is everywhere,
and suddenly I am wandering through
thickets of data and lore, boning up on
what happens during my absences. The
14
Part Two
Peter Sirr is an Irish
poet, freelance
writer and part-time
lecturer at Trinity
College.
This article is part
two of Peter’s essay
on his experiences of
living with epilepsy,
originally published
in The Dublin Review,
Issue 41, Winter 201011. Our thanks to the
Dublin Review for
allowing us to reprint
it in Epilepsy News.
most prolonged absence is the grand mal,
now stripped of its linguistic melodrama
and usually referred to as tonic-clonic
seizure, with the stiffening and jerking
of the limbs as sudden abnormal bursts
of electrical activity pass through the
brain. No one knows why these bursts
occur. The advance warning that many
experience is called the aura, and can
include lightheadedness, dizziness and
a strangely altered state of mind, as if
consciousness has retreated into a cave
and relinquished all claim on its bodily
host.
The outward drama of all these stages
has tended to attract disproportionate
interest, and often seemed clear evidence
of some kind of possession. Depending
on where you lived, the possession could
be seen as sacred or demonic. Prophetic
epileptics figure throughout history:
Balaam the seer in the fourth book of the
Pentateuch, Cassandra in the Oresteia,
whose grim prophecies are accompanied
by frothing at the mouth, convulsions
and spitting blood. Herakleianosos,
morbusherculeus, mal d’hercule – the
Greeks were convinced that Hercules had
epilepsy, hence ‘the sickness of Hercules’.
Christianity in its turn intervened to
muddy the picture. There is the famous
incident in the New Testament where a
distraught father brings his son, displaying
the classic symptoms of epilepsy, to Jesus
for healing. His disciples have tried their
luck but failed. Jesus heals the boy by
calling out the evil spirit within him who
is clearly responsible for the attacks.
Needless to say, this was not the best
publicity for the disease, and led to
the centuries-long habit of associating
it with possession by demons –
morbusdaemonicu was a popular
medieval name for it. In his last painting,
Raphael incorporated this New Testament
story into his vision of the transfiguration
of Christ on Mount Tabor. The lowerright-hand corner of the painting is
taken up with the scantily clad boy in
apparent mid-seizure, his arms stretched
out and rigid, his eyes rolling back in
his head, his anxious father grasping
him from behind. On the face of it this
seems an extraordinary thing for Raphael
to do. What’s the connection? Why is
this incident given such prominence?
The two events seem, on first sight, to
have nothing to do with each other. The
epileptic boy, maybe, enacts symbolically
the death and resurrection which Jesus
will himself endure; and, perhaps to
signal this connection, the boy is the only
figure in the painting who looks at the
transfigured Christ.
Hercules, Caesar, Pope Pius IX, Joan of Arc,
Flaubert, Dostoyevsky, Molière, Napoleon,
Van Gogh, St Paul: it is traditional in the
case of any infirmity to reach out into the
world of celebrity to find famous fellowsufferers. Those of us who are marked
out by the mal des prophètes must all,
therefore, be exceptional. Some have
tried to make a case for a link between
epilepsy and spirituality; I find myself
slumped over a 1970 paper, ‘Sudden
religious conversions in temporal lobe
epilepsy’. What about atheism and
epilepsy, I wonder? Others argue for a
link between epilepsy and creativity, but
equally people will argue that there is
a connection between certain kinds of
mental illness and the artistic impulse. I’m
slightly distrustful of these theories, which
seem to medicalize creativity, treating it
as some kind of condition. And yet, I can
see some similarities in the behaviours
produced by epilepsy and, in my own
case, the writing of poetry. There’s often,
in writing as I imagine in any kind of
creativity, a sudden spurt of what feels like
electrical energy followed by exhaustion,
a kind of unexpected possession. The
Greek root of ‘epilepsy’ means ‘to be
seized, overwhelmed by surprise’, and this
can very happily be applied to poetry.
There is another sense in which epilepsy
and poetry might be said to touch
each other. Writing poems is a kind of
withdrawal, a temporary absence from
the world which mirrors the absence
of falling. One is a neurological event
without any issue; the body performs its
dance and exits the stage into a feast of
blankness. The other is a partly willed,
partly unconscious removal of the self
from its normal circuit; it is a strategic
withdrawal with hope of a profitable
return, a turning away in order to turn to
something else, or to listen, or to place
the mind where there is a possibility of
some kind of fruitful accident. Poetry
is, like any form of art, at some level an
effort of self-completion, an attempt to
compensate for the sense of absence.
‘The poet is someone who feasts at the
same table as other people,’ Anne Carson
has written. ‘But at a certain point he feels
a lack. He is provoked by a perception of
absence within what others regard as a
full and satisfactory present. His response
to this discrepancy is an act of poetic
creation …’* An act, maybe, that returns
the creator to the world.
I embraced poetry, but at some level I still
have the deepest distrust and dislike for
the faller in me, as I had for the different
kind of faller in my father. When he
began to fall it was because his balance
was suddenly skewed, the signals were
confused. He had all his strength but his
brain could no longer direct it and so
he stumbled, and when he walked he
found himself having to clutch walls to
support himself. He also began to drive
in a jagged, jerky way, so much so that
one day an infuriated motorist behind
us leapt out from his car at a red light
and performed a citizen’s arrest on him,
assuming he was drunk. And he kept on
falling, deeper and deeper into himself.
In the beginning I could walk with him
by supporting him. He carried a walking
stick but it had little practical value; it was
more a signifier of infirmity to deflect
assumptions of drunkenness. Eventually,
he started to use a wheelchair. When
the stairs were no longer an option, the
sitting room was turned into a bedroom
with a metal hospital bed – a horrible
transformation, not because we cared
about the room but because we knew
that from now on things would only get
worse.
“I distrusted my own
epilepsy as much as that
first neurologist did.
It may also have been
an internalization of
some residual shame or
embarrassment at what
was - not least because of
centuries, even millennia,
of misinformation - a littleunderstood condition”
Eventually, my father ended up in hospital
again, first the Meath and then the
Adelaide. This was the hardest period,
the last phase of the illness, when he had
begun to drift away. He could no longer
respond to us except with his eyes, which
remained alert, intelligent, expressive.
We would talk to him, tell him whatever
news we had, and sit in the silence of the
room. I can remember calling in on the
way to college to sit and talk, really just
to make some kind of companionable
noise. When my first book came out, I
brought in a copy to show him. Many of
the poems were about him, or addressed
to him, or just written out of the sadness
at what had happened to him, at the
sheer precariousness of life. I think he
was beyond responding to news from
the world at that point. What power did I
think poetry had that it could lift him back
towards us?
I remember the final journey. We were at
home and I was about to go into town
to visit him. There was a row – the details
of it are a mystery now – and because I
was angry, rather than getting the bus as
I usually did, I walked to the hospital. How
many times have I cursed that decision?
When I eventually walked through the
door of the Adelaide I met the priest
coming down the stairs. My father had
just died. A few minutes earlier and I
would have been with him. I still find it
hard to accept that he could have gone
without any of his family around him.
Hospitals, of their nature, industrialize
death; it is something that takes place in
a remote, clinical space, in an unfamiliar
part of the city. The place is, at least, alive
inside my head. Many years later, when
I lived in Christchurch Place, I used to
pass through Peter Street, where the
Adelaide was, and enjoy walking its brief
length because I felt my father’s eyes on
me from an upper window as I passed.
Then one day when I turned into the
street I saw that the hospital had been
demolished. All that was left was the
façade on the street side, a doorway
and windows leading into nothingness.
Diggers were busy excavating, and a
crane swung its arm gently overhead. A
hoarding announced the arrival of a new
apartment complex. It was odd to think
about people going about their ordinary
lives in this new space with its ghosts of
hope and suffering, its long corridors and
busy machinery. ‘I’d almost pray some
ache remain / like a flaw in the structure,
something unappeasable / waiting in
the fabric, between floors, in some /
obstinate, secret room’, I wrote later; but
the more powerful feeling was to wish
the new building, the new lives, well:
. . . let music roam the corridors,
joy patrol the floors, St Valentine’s
stubborn heart come floating from
Whitefriar street
to prevail, to undo injury, to lift my father
from his bed,
let him climb down the dull red brick,
effortlessly,
and run off with his life in his hands.
*Anne Carson, Economy of the Unlost,
Princeton University Press, 1999, p. 108.
www.petersirr.com.
15
Get yourself connected – online epilepsy support
By Deirdre-Anne Wynne-Robinson
I registered because I was curious. I’d
never made it to a face-to-face support
group meeting because I don’t drive due
to my epilepsy. I love that I can join the
online support group from the comfort of
my living room without having to
organise childcare or transport.
It was really easy to register. The link
on the website makes it easy, and the
instructions are simple to follow. The
hardest thing was choosing a username.
For most people remaining anonymous
is important, so choosing a username can
be fun. For me, I make a point of talking
about epilepsy to people I meet, and I’ve
gone public about my epilepsy, so I just
decided to use my own name.
Last October, Epilepsy Ireland
launched the Epilepsy Online
Support Group, providing
an understanding space for
people with epilepsy to talk
openly about the condition and
its impact, and learn from the
experiences of others. Here,
Online Support Group user
Deirdre-Anne Wynne-Robinson
shares her experience of using
the new service.
advice, though it’s a great place to learn
more about epilepsy. We talk about
things that people without epilepsy won’t
understand, such as the difficulties of not
being legally permitted to drive, the joy
of being allowed drive eventually and the
concerns of families and friends when
we, the people with epilepsy, decide we
want to undertake something that they
consider too risky – for example going
out to discos. Most young people with
epilepsy can go to discos, they just have
to take precautions. So many people
think everyone with epilepsy is affected
by lights and so discos are not safe.
The groups discuss anything people
logging in on the day choose. We talk
about driving, generic substitution of
medications, sleep issues and family
issues. If we’ve had a bad time with lots
of seizures we can rant, and we can
support each other. The great thing is
that the people in the chat room know
what having epilepsy feels like and
can celebrate the highs of not having
seizures for a time, commiserate when
a breakthrough seizure happens, and
empathise when family and friends get
I find the group is fun. It’s good to
overprotective or won’t help out when we talk about epilepsy with others who
know we need more support.
understand. Many have gone through
similar experiences before me, or are
One doesn’t have to get personal,
going through something I have gone
because the groups are anonymous and
through already. By sharing information
one chooses how much to reveal. It’s up
we can show that life with epilepsy is not
to each person to choose what to say
just manageable, it’s fulfilling.
about themselves. The facilitators are on
hand to ensure that rules of privacy are
People can come in and discuss things
respected.
about which they are concerned, or
The forum is not a place to complain
about doctors or get specific medical
can’t discuss with their families or
friends. Some people in the group
newly diagnosed. Both get different
support from each other. The newbies
get valuable information from the
incumbents (can’t really call them oldies,
now can I?), and the incumbents get
self-confidence realising just how far
they have come. Both groups share
information on how to manage and live
with epilepsy. Even small tips such as
getting enough sleep and asking for help
are valuable.
For people who can’t travel easily, being
online makes things much easier. The
ability to talk to others anonymously is so
freeing, especially for people who haven’t
(yet) made the choice to tell their family,
friends, colleagues and acquaintances
about their epilepsy.
If you’d like to join us and have a chat
about your epilepsy, you can register at:
http://support.epilepsy.ie.
Upcoming Meetings:
14th May 11a.m. – 12:30p.m.
22nd May 7p.m. – 8:30p.m.
28th May 7p.m. – 8:30p.m.
7th June 11a.m. – 12:30 p.m.
http://support.epilepsy.ie.
16
The Epilepsy Online Support Group
Talking to your children about your epilepsy
At a recent Epilepsy Ireland event
in Dundalk for parents who have
epilepsy, Mark Mulrooney, Senior
Clinical Neuropsychologist from
Beaumont Hospital and Sinead
Murphy, Clinical Nurse Specialist,
facilitated a very interesting
session on discussing your
epilepsy with your children. The
following are some of the key
points from the evening that may
be helpful if you need to hold that
conversation.
It is good to be honest with your
child about your epilepsy.
child matures, further information can be
explained to them.
The child will know that something
is wrong and you can talk to them
in language that is easy for them to
understand and appropriate for their age.
The words used can be simple and clear.
Sentences of not more than five words,
and words of five letters is good practice
for a younger child.
Should you be protecting your
child from your condition?
Involve them in your epilepsy in a
positive way.
Children may be afraid of your epilepsy. If
you communicate well with them, in an
age appropriate way, and involve them in
your epilepsy, it will alleviate their fears.
If they see that you are comfortable with
talking about the issue, they will trust that
there is nothing to worry about. They will
take the lead from you. Some parents give
the children little tasks which relate to
helping the parent manage their epilepsy.
Others prepare their child by practicing
what the child should do if the parent
experiences a seizure. Children like to be
involved in their parent’s lives.
Children will pick up signs and will know
where ‘something is wrong’ regardless of
whether you tell them. They will pick up
cues from their parents as to whether to
be anxious or worried about something.
Most of all, they want to be reassured that
their parent is okay and they (the child)
are safe and loved. Hiding your condition
from your child does not allow the child
to be part of the situation and become
confident in the situation. Open and
honest communication is the key.
Staying relaxed when talking to
your child
It can be a challenge for a parent with
epilepsy as some parents can’t drive
their children places, or go out on trips
as much as others. Some children may
get anxious if they have witnessed a
parent’s seizures before. Overall, it can
be upsetting for parents if they find they
are less involved than other parents. But
Different children, different
parents can create great quality time
with their children even within the family
approaches.
home. The key point is to keep a relaxed
It is best for parents to assess the age
environment with them, talk to them at
and maturity of the child to decide what
language to use, for example, whether the non-pressurised times – for example in
the bath, before bed and let them know
use of the word ‘epilepsy’ will be helpful
that you are relaxed and approachable
for their child. As the parent knows their
to talk about epilepsy, or just simply for
own child best, different parents have
communicating with them in general.
different approaches. The key point is to
ensure that the child understands what
Older siblings
is being explained to them. It is good to
You can find out how your younger
be aware not to overload the child with
children might need to understand
information – as much as they need to
your epilepsy by asking your older
know is enough at that time. When the
siblings what they would ‘say to another
child’ – often you can hear how a
child understands things by using this
approach, and they will often identify
words and phrases for you that will help
younger children to understand your
condition.
Children and Safety
In some cases, depending on the
circumstances and the age of the child,
children can be trained to stay safe (for
example by sitting in the buggy, by
pressing a picture button of another
family member on a phone with large
keys). This can be discussed further with a
health professional.
If you have any questions about this topic,
your health professionals will be able to
offer advice. In addition, our Community
Resource Officers often run talks and
events for parents – contact us to see if
there is one in your area.
Please tell us about your experiences
of discussing your epilepsy with your
child, and what tips you would like to
share with other parents - drop a short
email to us at [email protected]. Your
suggestions may be published in the
next issue of Epilepsy News.
17
Talking About Epilepsy - Take part in a new research study
you and your child/children’s experiences of telling/not telling,
or talking/not talking, to others (e.g. friends, teachers etc.) about
epilepsy.
To take part, children should be aged 6-15 years with a diagnosis
of epilepsy (for longer than 6 months and with no other medical
condition).
Taking part involves doing in an interview at a time and location
of your choice. Child interviews will be fun, including doing art
and make collages together so that children can tell their story.
Researchers at Dublin City University are currently inviting
children with epilepsy and their parents to take part in a study
entitled “talking about epilepsy”.
Dr Veronica Lambert from the School of Nursing and Ailbhe
Benson, PhD student are conducting the research and Epilepsy
Ireland is an official collaborator on the study, which is funded
by the Health Research Board.
The study will examine you and your child/children’s
experiences of living with epilepsy. In particular it will look at
Through this study, we hope to learn more about the challenges
(positive and negative) that face children living with epilepsy.
This information can help us to tackle the negative challenges
faced by children living with epilepsy in the future and
ultimately help us to raise awareness
about epilepsy in children.
If you would like to take part, and/
or want to know more about the
study, please contact Ailbhe at
087-3124218 or by e-mail: ailbhe.
[email protected].
http://bit.ly/13OKqIi
European Month of the Brain
May 27th-28th
Convention Centre, Dublin
The European Commission
has designated May 2013 the
European Month of the Brain.
Across Europe, this month
is being devoted to raising
awareness of neurological
conditions and demonstrating
the importance of brain
research.
This conference brings
together policymakers,
representatives from
ministries, funding agencies,
industry, patient organisations,
researchers and health
professionals to highlight why
policy-makers across Europe
should devise, or refine,
national strategies on brain
research and healthcare.
European Forum on
Epilepsy Research
May 25th – 27th
Convention Centre, Dublin
International Events
See page 2 for more details
As Ireland holds the
Presidency of the EU during
Month of the Brain, a number
of international events are
taking place in Dublin to mark
the month.
European Patients Forum:
Annual Conference
May 23rd
Healthy brain: healthy
Europe
“A new horizon for brain
research and health care”
18
This event will attract up to
150 delegates from patient
groups across the continent. It
is hoped that the report from
this event will feed into the
‘Healthy Brain: Healthy Europe’.
Did You Know?
• Brain-related disorders affect
at least one in every people
during their lifetime.
• Treating brain disorders
costs almost €800 billion in
Europe every year – more
than cancer, diabetes and
cardiovascular disease
combined.
Brain Month – Ireland
The Neurological Alliance of
Ireland (NAI) and its member
groups including Epilepsy
Ireland are holding a series
of Wellness Days during
European Month of the
Brain aimed at promoting
wellbeing when living with a
neurological condition. These
days are for both people with
neurological conditions and
their families. They will take
place in:
• Kilkenny: Wed 8th May
The Neurological Alliance of
Ireland’s Red Card for Neurological
Care will highlight during
European Month of the Brain,
the deficits in care that still
exist in Ireland for people with
neurological conditions.
See www.nai.ie for more
information, or contact your
local Epilepsy Ireland office.
• Limerick: Wed 15th May
• Cork: Fri 17th May
• Galway: Wed 22nd May
NAI Brain Month page:
http://bit.ly/ZrcFfD
New Director of Services
Wendy joined Epilepsy
Ireland in January and
will be responsible for
the management and
development of all of
Epilepsy Ireland’s services
to people with epilepsy and
health professionals.
Epilepsy Ireland is
delighted to welcome
Wendy Crampton as our
new Director of Services.
Before taking up her new role,
Wendy has worked in the
voluntary sector in Dublin for
12 years, mainly focusing on
social inclusion and equality
issues such as homelessness,
addiction, domestic violence &
gender equality and Traveller
inclusion. Her posts have
included working in the areas
of training, research, policy,
community development and
management of residential
and outreach services. She
has also headed up human
resources and volunteer
management functions
and has recently worked on
best practice and quality
approaches to service delivery.
Wendy holds a BA in
psychology, a Post Graduate
Diploma in Business Studies,
an MA in Development
Studies and a Post Graduate
Diploma in Psychotherapy. She
is passionate about inclusion
and equality and is delighted
to be working in the disability
sector and with people with
epilepsy.
Epilepsy Awareness Committee
Raising awareness of
epilepsy is one of Epilepsy
Ireland’s key objectives.
Last year, the Epilepsy
Awareness Committee
was established to
lead on planning and
implementing awareness
activities and to advise the
Board on issues around
awareness. Supported
by staff members Peter
Murphy and Paul Sharkey,
the group meets regularly
and has played a key role
in the recent rebranding
and on activities such as
European Epilepsy Day and
the generic substitution
campaign. We’re delighted
to introduce you to the
group.
Cathy Grieve (Chair)
Cathy is a former senior editor
with BBC News and currently
runs her own media production
company, Red Diamond Media.
Five years ago, she had her first
seizure while boarding a flight at
Dublin airport. “It has changed the
way I live my life. I am now much
more educated on the condition
and feel I can use my media skills
to communicate and educate
people about it”, she says.
Eoin Kernan (Vice-Chair)
Having been diagnosed with
epilepsy at 20 years of age, Eoin
now works with Epilepsy Ireland
to help support others who
have been diagnosed at a similar
age. He works in arts marketing,
freelance TV production and as
radio presenter. His philosophy is
‘There’s life out there to be lived,
so just get out and live it!’
Rachel Ashe
Rachel has been a long-time
Epilepsy Ireland fundraising and
media volunteer, highlighting
her epilepsy on radio, TV and in
the press. In 2009, she set up
the “Epilepsy Ireland” Facebook
Group in order to talk to other
people who have epilepsy, to
share experiences and to raise
awareness. Rachel brings her
professional marketing skills to the
Awareness group.
Tony Caravousanos
Tony is Client Service Director
at the Havas Worldwide Dublin
advertising agency. He has been
instrumental in Epilepsy Ireland’s
European Epilepsy Day advertising
campaigns for the past three
years. “It’s vital that Epilepsy
Ireland has a strong voice in the
community to deliver greater
understanding of the condition in
Ireland”, says Tony.
Audrey Muddiman
Audrey has been active in
Epilepsy Ireland for several years
and currently serves on the Board.
Previously, Audrey was a member
of Epilepsy Ireland’s Group on
Driving and Epilepsy. Audrey has
worked as a journalist and has
been the subject of many media
interviews where she discussed
her epilepsy.
Rick O’Shea
Rick is the presenter of the
afternoon show on 2FM and one
of Ireland’s leading tweeters. His
epilepsy diagnosis came at the
age of 16. In 2006, Rick became
a patron of Epilepsy Ireland and
since then has worked tirelessly
to improve public understanding
of epilepsy. Last year Rick won
Celebrity Mastermind on TV3,
representing Epilepsy Ireland.
Carol Saarsteiner
Carol’s daughter Nikki was
diagnosed with epilepsy 2003,
and since then raising awareness
about the condition has become
a huge priority for her. Carol
currently serves on the Board of
Epilepsy Ireland and has played a
key role in some of the charity’s
fundraising events and advocacy
campaigns.
19
UPCOMING EVENTS
Eurovision For Epilepsy
Saturday May 11th
Vanilla Nightclub,
Donnybrook, Dublin
Doors open: 7.30pm
Tickets: €15
Brainteaser
Quiz Night
Capture the excitement
surrounding Eurovision,
this unique event promises
to be a night of fun,
music and entertainment
incorporating the best Eurovision music and Ireland’s
biggest up and coming acts along with some surprise
special guests. For more info or to reserve tickets, email
[email protected] or call us at 01
4557500. A huge thank you to Ciara Bardin for all the time
and energy she has put into organising this event. Looking
forward to a great night!
Barrack Hill Ball Roll 2013
August 5th 2013, Cobh, Co Cork
The Barrack Hill Ball Roll is a lottery like no other, featuring
thousands of coloured numbered balls bouncing down
the steepest hill in Cobh. An afternoon packed full of family
entertainment is promised. Epilepsy Ireland is delighted to again
be one of the charities to benefit from the event. You can show
your support by buying or helping to sell some of the 6,000 balls
that are up for grabs. Lines cost just €2. For more info, contact
Bernard in our Cork Office at 021 4274774.
Thank you
Thank You To…
• Caroline Chadwick who raised €100 by running a raffle and
lipstick amnesty & makeover event in The Steering Wheel Pub,
Clondalkin.
• The staff and students from 5th & 6th year in St. Gerard’s
Senior School, Bray who ran their Annual Christmas Bazaar to
raise funds for charity. We were delighted to receive €600 from
their efforts.
• The Bionic Rats, Graham Birney, Derek Clabby & friends,
for raising €2,117 - the proceeds of a gig that that took
place in the Turks Head, Dublin in December on the 10th
anniversary of Damien Clabby’s passing.
• Brian Bless & all those involved in Corpus Christi
Boxing Club who raised a fantastic €1,000 by organising &
participating in Limerick Charity Boxing last November.
• Collette Cooke School of Irish Dancing who raised €180
through a raffle at their Annual Feis.
• Angela Flannery who organised a Halloween fancy dress in
her son Shane’s crèche Little Steps in Ballinrobe & raised €200.
• Laoise & Catherine Newman from Skibbereen who held
a fundraising raffle, a coffee morning and sold Brainwave
calendars raising €905.
• Mark O’Gorman from Dundalk who undertook a sponsored
shave in November & raised €350.
• Elaine Byrne who sold €236 worth of our Christmas cards last
year.
• The Tullamore Lions Club for their recent €300 donation
20
• Ger Sullivan who raised €210 participating in Movember.
Thank you
Running for Epilepsy
Thank you to all our runners
who took part in the Dublin
City Marathon last year - Mark
Loughnane, Mick Quinn, Dave
McMahon, Colum Carter &
Ray Cullen. Thanks also to
Mihai Cadar who took part
in the Frank Duffy run and
Ronan Weldon (pictured)
who completed his first ever
triathlon at the TriLaois this
year. Collectively, over €5,000
was raised through their
outstanding efforts.
A Christmas Carol
Organised by the bar’s
fundraising committee led by
Maria McClearnon (pictured
with Epilepsy Ireland’s Noreen
O’Donnell) and supported
by her crew, the night raised
a fantastic €846.80. Thank
you to everyone involved for
choosing Epilepsy Ireland as
their charity.
Marie’s birthday
donation
St Valentine’s Roses
A huge thank you to all the
volunteers without whom
Valentine’s Rose Week simply
wouldn’t be possible. Pictured
are just two of our committed
crew - Jean Morrissey & Sandra
Maher, braving the cold
outside their local Centra in
Fethard. Thanks also to all who
participated in the launch of
our text donation service & to
those who texted in.
Marie Murphy from
Castleblaney recently
celebrated a very special
birthday and donated €1,100
to us raised at her celebrations.
Pictured are Marie’s son
Michael who arrived home
unexpectedly from Australia,
Marie’s husband Eugene, the
birthday girl herself, daughter
Jennifer and son Paul. Thank
you very much to Marie, and
to all her family and friends
who supported the night.
Champions of
Chapelizod
CD Launch in Cork
A great night of singing and
‘craic’ was had by the large
crowd who turned up for the
launch of Dan O Leary’s CD
on 10th April. Dan sings ‘Old
Time Favourites’, accompanied
by Mr. Walter O Leary on
the album. Many thanks to
the sponsors – An Spailpin
Fanach, B Condon Mechanical
and The Flying Enterprise.
Epilepsy Ireland is one of
two beneficiaries from the
proceeds and we would like to
say a special thank you to all
the O’Leary Family who have
been great supporters of our
organisation over the years.
The CD is available from our
Cork office and costs just €10.
Wonderful birthday gifts
Covidien Donate to
Epilepsy
Thanks to Emma Farrell & her
friends in Dublin Gospel Choir
who sang their hearts out last
Christmas at the St. Stephen’s
Green Shopping Centre and
raised a brilliant €750.
Fane Bar’s fantastic
fundraising
An All Star Tribute Night was
held for Epilepsy Ireland in the
Fane Bar in Dundalk recently.
Thank you to all employees in
Covidien, Tullamore for their
recent generous donation
of €2,600 provided through
Covidien Cares, the company’s
philanthropy programme.
Pictured are Orla Bourke
(Covidien), Dermot Byrne
(Covidien and Epilepsy Ireland
volunteer) and Margaret
Bassett (Epilepsy Ireland).
Thank you to David Doran
for nominating us as the
beneficiary charity of the
Chapelizod Derby charity
football match which took
place last year to raise funds
for epilepsy and also to settle
a long running debate - who
really are the Champions of
Chapelizod?! The match was
followed by a sports auction
in the Mullingar House.
Our thanks to Aaron Lynch,
Conor Lyons and friends for
all the hard work they have
put into organising a hugely
successful event which raised
a phenomenal €9,000.
A very special thank you from
all at Epilepsy Ireland to three
very generous young stars
who decided to donate their
birthday money to Epilepsy
Ireland - Rachel & Stephen
Reilly (pictured) from Mayo
aged 8 and Aisling Baragry
from Dublin who celebrated
her 11th birthday in February.
We’re very grateful and proud
of you!
21
Regional News & Events
East region
(Co’s Dublin, Kildare, Wicklow)
Contact: Ina Murphy,
Community Resource Officer,
Epilepsy Ireland, 249 Crumlin
Road, Dublin 12. Tel: 01 –
4557500. Email: imurphy@
epilepsy.ie. Office Hours:
Mon & Tue, 10am - 6pm;
Thur 1.30pm - 6pm
Upcoming Events
Dublin: Family & Friends
Group
Head Office, 249 Crumlin Road
Saturday, May 4th
11am – 1pm
Support group for parents,
family members, carers &
friends of adults & adult
children who experience
seizures.
Dublin: Family Fun Day
Farmleigh House, Phoenix Park
Saturday, May 11th
2pm - 5pm
Bring a picnic, join in the fun
and games. Light refreshments
will be provided.
Dublin: Coffee Morning
Head Office, 249 Crumlin Road
Monday, May 20th
11.30am – 1.30pm
Coffee Morning to celebrate
National Epilepsy Week. Phone
01 4557500 to confirm your
attendance.
Dublin: Men’s and Women’s
Support Group
Head Office, 249 Crumlin Road
Tuesday, May 28th and
Tuesday June 25th
8.00pm
Naas: Outreach Service
Naas Health Centre, St. Mary’s
Hospital
Monday, June 10th
11am – 4pm
Please contact Ina to make an
appointment.
22
Newbridge: Outreach
Service
Newbridge Health Centre
Monday, June 24th
11am – 5pm
Please contact Ina to make an
appointment.
South East region
(Co’s Kilkenny, Carlow,
Waterford, Wexford and South
Tipperary)
Contact: Joan Ryan,
Community Resource Officer,
Epilepsy Ireland, c/o HSE,
St. Joseph’s, Waterford Rd,
Kilkenny. Tel: 0567789904.
Email: [email protected]. Office
Hours: Mon, Tue, Wed 10am 5.30pm; Thur 10am - 2pm
Upcoming Events
Kilkenny: Wellness Day
Wednesday, May 8th
Lyrath Hotel
Supported by the Neurological
Alliance of Ireland. Registration
from 9.30am. Programme runs
from 10.30am - 4pm.
See www.nai.ie for more.
Kilkenny: Open Day at New
Epilepsy Ireland Office
Monday, May 20th
St Joseph’s, Waterford Road.
Join us to mark National
Epilepsy Week, anytime
between 11am and 4pm
Enniscorthy: Outreach and
Support Group
Tuesday, May 21st
Supported Employment Office
(downstairs), IFA Centre, Mill
Park Road, Enniscorthy
Outreach is by appointment
only. Please contact Joan to
arrange.
Support Group from 3.30pm –
5.00pm
Waterford: Epilepsy
Awareness Presentation
Wednesday, May 22nd
Venue: to be confirmed
11am - 12.30pm
Waterford: Support Group
Wednesday, May 22nd
Cheshire Home, John’s Hill,
Waterford
7.30pm
This is an open meeting
for people with epilepsy,
their family and friends. All
newcomers are welcome.
Contact Joan for further info.
Cork
Address: Epilepsy Ireland, 35
Washington Street, Cork. Tel:
021 4274774
South Lee & West Cork: Niamh
Jones, Community Resource
Officer. Email: njones@
epilepsy.ie. Office Hours: Mon
& Tue 8am- 4.30pm; Wed &
Thur 8am – 1pm
North Lee & North Cork:
Mary Lawlor, Community
Resource Officer. Email:
[email protected]. Office
Hours: Tue, Wed, Fri 9.30am
-5.30pm; Thur 1.30pm 5.30pm.
Upcoming Events
Cork: Wellness Day
Friday, May 17th
Cork: The Parents support group
and children with epilepsy paid
a visit to the City Hall to meet
with the Lord Mayor, Cllr. John
Buttimer in March. The group was
welcomed into Council Chambers
by the Lord Mayor who spoke
about the history of City Hall and
previous Lord Mayors and took the
group on a most interesting tour.
Many thanks to Cllr. Buttimer and
to all the staff who looked after us
all so well on the night.
Oriel House, Ballincollig, Co
Cork
Registration from 10am
Supported by the Neurological
Alliance of Ireland. Further
details to be confirmed, check
www.epilepsy.ie
Cork: Epilepsy Information
Stand
Cork University Hospital
Wednesday, May 22nd
10am-4pm
Cork: Support Group for
parents of children with
epilepsy
Bishopstown GAA Club
Wednesday May 22nd
7.30pm
Kerry
Contact: Kathryn Foley,
Community Resource Officer,
Epilepsy Ireland, 9/10 The
Paddocks. Ballydowney,
Killarney, Co. Kerry. Tel: 064
6630301. Email: kfoley@
epilepsy.ie . Office Hours: MonFri 9am - 2.30pm.
Midlands: Pictured at the recent
Athlone Institute of Technology
Health Promotion Day are
Margaret Bassett and the family
of the late Andrew Claxton.
The day was organised by the
Student Union and classmates
of former student Andrew in his
memory. Epilepsy Ireland was
also nominated as the beneficiary
of the students’ fundraising
efforts on the day and since
then, awareness presentations
have been delivered to staff and
students at the College.
Upcoming Events
Killarney: Information
Morning for people with
epilepsy
Epilepsy Ireland Office,
Killarney
Monday, May 20th, 10.30am
Killarney: Information
Morning for parents of
children with epilepsy
Tuesday, May 21st
Epilepsy Ireland Office,
Killarney
10.30am
Killarney: Ladies
information meeting
Epilepsy Ireland Office,
Killarney,
Friday, June 21st, 11am
Midlands
(Co’s Offaly, Laois, Westmeath
& Longford)
Contact: Margaret Bassett,
Community Resource Officer,
Epilepsy Ireland, c/o Carers
Association, Market Square,
Midlands: Pictured at the Epilepsy
Information Evening sponsored
by Covidien in Tullamore on 26th
March are Wendy Crampton,
Epilepsy Ireland Director of
Services; Sinead Murphy Epilepsy
Specialist Nurse; Edel Mc Cormack,
Mindfulness Instructor; Margaret
Bassett, Epilepsy Ireland CRO; Ann
Kinahan & Ann Caduff, Epilepsy
Ireland volunteers.
Tullamore, Co. Offaly. Tel: 057
9346790. Email: mbassett@
epilepsy.ie. Office Hours: Mon,
Tue, Wed & Fri 10am - 2.30pm;
Thur 9am - 5pm.
Upcoming Events
Tullamore: Parents Support
Group
Offaly Centre for Independent
Living, Clonminch Rd,
Tullamore
Thursday, May 16th, 7pm
North west
(Co’s Donegal, Sligo & Leitrim)
Contact: Agnes Mooney,
Community Resource Officer,
Epilepsy Ireland, Grand Central
Complex, Floor 2B, Canal Road,
Letterkenny, Co Donegal. Tel:
074 9168725. Sligo Office:
Model & Niland Arts Gallery,
The Mall, Sligo. Tel: 071
9141858. Email: amooney@
epilepsy.ie. Office Hours: Mon,
Tue, Wed 9am - 5pm;
Thur 9am - 1pm.
Upcoming Events
Sligo: Information Evening
Clarion Hotel, Clarion Road.
North East: Staff at the National
Learning Network in Dundalk
receive their Certificates in Epilepsy
Awareness and the Administration
of Buccal Midazolam.
Tuesday, May 28th, 7.30pm
Guest speaker: Sinead Murphy,
Community Epilepsy Specialist
Nurse.
Sligo: Outreach Service
Wednesday, May 29th
9.30am to 12.30pm
Please contact Agnes to make
an appointment.
Western region
(Co’s Galway, Mayo,
Roscommon)
Contact:
Evelyn Monson-Kirby, Epilepsy
Ireland, Westside Resource
Centre, Seamus Quirke Rd,
Westside, Galway, Tel: 091587640. Email: emonsonkirby@
epilepsy.ie
Office Hours: Tue, Wed & Thur
9am - 5pm; Fri 9am - 1pm
Upcoming Events
Galway: Coffee &
Information Session
Westside Resource Centre,
Seamus Quirke Road.
Monday, May 20th
2pm - 4pm
Session will be facilitated
by Teresa Leahy, Neurology
Nurse Specialist, UHG & Evelyn
Monson Kirby, CRO.
Galway: Wellness Day
Wednesday May 22nd
For details contact Evelyn
mid-west region
(Co’s Limerick, Clare & North
Tipperary)
Contact: Anna Kelly,
Community Resource Officer,
Epilepsy Ireland, Social Service
Centre. Henry St. Limerick. Tel:
061 – 313773. Email: akelly@
epilepsy.ie. Office Hours: Mon
9.30am - 5pm; Wed 9.30am 5.30pm; Thur 12.30pm - 5pm;
Fri 11.30am - 4pm.
Upcoming Events
Limerick: Anxiety & Stress
Management
Kilmurray Lodge Hotel,
Castletroy, Limerick
Saturday, May 4th
Registration from 9.15am
Course Facilitator: Anne
Buckley, RN, RM DIP HC, Mgt,
MISMA
Cost per person €5.00 includes
tea/ coffee & refreshments
For further details, contact
Anna.
north east region
(Co’s Louth, Meath, Cavan,
Monaghan)
Contact: Noreen O’Donnell,
Community Resource Officer,
Epilepsy Ireland, Unit 1a
Partnership Court, Park Street,
Dundalk, Co Louth. Tel: 042 –
9337585 Email: nodonnell@
epilepsy.ie. Office Hours: Mon,
Tue & Wed 9am - 6pm.
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