Issue 2 - Epilepsy Australia

Transcription

Issue No. 1, 2007
Swim safe this summer
water-safety for children
epilepsy & memory
Michelle Bellon
Olympic cyclist
Marion Clignet
when tenacity and epilepsy converge
Toba Kerson
examines the stigmatizing of
epilepsy in film and TV
Susanne Lund
IBE gains voice in UN
neuropsychologist
Robert Mittan
coping with guilt
Against all odds
the remarkable story of neuroscientist
Caitlin McOmish
THE EPILEPSY REPORT NOVEMBER 2007
1
WELCOME
This issue’s special feature is the remarkable story
of Caitlin McOmish. Brain damaged at 13 months and
diagnosed with epilepsy, Caitlin is today one of Australia’s
leading young scientists. When her parents refused to
accept that such a young brain was incapable of learning,
Caitlin’s journey began. It is an inspiring story with the
message of never giving up hope.
Never one to give up, regardless of the obstacles put in
her way, is World Champion and Olympic cyclist, Marion
Clignet. Discrimination forced Marion to move to France to
fulfil her dreams. Now ‘officially retired’ Marion isn’t taking
it easy as you will read, sport is her passion and epilepsy
her constant companion.
Preparing your child to take on the world as Caitlin
and Marion have done is Bob Mittan’s mission. The
responsibility of being a parent of a child with seizures
can, at times, be a heavy burden. In this article Bob talks
frankly about coping with parental guilt, what it is and how
to free yourself of it.
Toba Kerson’s interesting research shows how negative
images of epilepsy and seizures have added to the
cultural stigmatization of epilepsy and ways to advocate
for change.
On the global front, Susanne Lund, President of the
IBE announced the United Nations recent approval of
IBE for Consultative Status. In a conversation with Dr
Carlos Acevedo, Susanne explains the significance of
this appointment and what it means for the epilepsy
community world wide.
CONTENTS
Tasmania government & EATas join forces
to promote epilepsy awareness program
Special feature
T
Brain-damaged baby to
promising neuroscientist.
Dr Caitlin McOmish
4
9
Researcher
Toba Kerson
how film and
TV stigmatizes
epilepsy
16
Marion Clignet
When tenacity
meets epilepsy!
23
Editor
Views expressed and information
included herein do not necessarily
reflect official policies of Epilepsy
Australia. Articles covering
medical aspects are not intended
to replace competent medical, or
other health professional advice.
All content is copyright and may
not be reproduced without prior
permission. Contributions are
welcome. The Editor reserves the
right to edit content for reasons of
space or clarity.
Epilepsy Australia Affiliates:
The Epilepsy Report is published Epilepsy ACT
Epilepsy Queensland Inc
by Epilepsy Australia Ltd
Epilepsy Association of SA/NT
818 Burke Road
Camberwell VIC 3124 Australia Epilepsy Association of Tasmania
Epilepsy Foundation of Victoria
Tel: 03 9805 9111
email: [email protected] Epilepsy Association of WA
National Epilepsy Helpline
1300 852 853
2
21
Susanne Lund
IBE achieves UN
status!
PLUS
Editor
Denise Chapman
Contributing Editors
Russell Pollard, Dr Frank Vajda,
Fiona Tito, Robert Cole.
Contributors
Michelle Bellon, John Berrill,
Kay Elphinstone, Mark Francis,
Toba Kerson, Susanne Lund,
Robert Mittan, Christine Walker,
Prof John Willoughby.
Photography
Dreamstime.com
UN Photo Library
Print Pegasus Print Group
Neuropsychologist
Robert Mittan
discusses coping
with guilt
EATas new dvd for pre-schoolers
Epilepsy & Memory
6
SA’s first seizure clinic
8
Singapore Congress Update
Epilepsy research at Flinders
15
14
Superannuation & chronic illness
22
18
Mailbox
Swim safe this summer – timely tips
face2face with Mark Francis
31
3
30
he Tasmanian State Minister
for Health and Human Services,
the Hon. Lara Giddings MHA,
recently launched the Epilepsy
Association of Tasmania’s [EATas] new
educational resource, Lily’s Story, an
animated film for preschoolers, at Sandy
Bay Infants School.
This film, the first of its kind in
Australia, was produced by Jacqueline
Dawborn and Hans Benisch for the
Epilepsy Association of Tasmania,
with funding from the Tasmania
Government’s Community Support
Levy.
Featuring an original song by
musician Daniel Martin, the film
focusses on the central character, Lily,
as she talks about her epilepsy. First aid
is broken down to four basic steps which
are demonstrated by Lily and repeated to
consolidate the message. This film runs
for approximately 6 minutes – the ideal
time for the attention span of a young
child.
Kay Elphinstone, State Coordinator
for EATas, said “this short film
introduces a positive image of
epilepsy to young children and will
assist in breaking down barriers of
misunderstanding in the community by
Left to right Toni Dale ( Committee member) Hon Kerry Finch MLC, Kay Elphinstone EATas State oordinator,
Martin Howell Southern Field Officer, Clare Thorne Northern Field Officer, Sue Peacock (class teacher)
Sandy Bay Infant school. Front Hon. Lara Giddings MHA Minister for Health and Human Services.
providing accurate information in a fun
and accessible way.”
A recent national survey of people
with epilepsy by the Joint Epilepsy
Council of Australia [JECA] found that
more than 52 per cent of people with
epilepsy experienced discrimination in
the past year.
EATas is committed to raising
awareness of epilepsy in the community
and the Association’s school awareness
programs help students grow up with
a more enlightened attitude towards
epilepsy and inform teachers of the
signs, treatment and management of the
many different types of seizures.
Lily’s Story now forms an integral part
of EATas school awareness programs
and can be used by teachers, early
childhood staff and epilepsy educators.
A copy of Lily’s Story on DVD is available
from the Epilepsy Association of Tasmania
for $15 plus p&h.
Contact Kay Elphinstone on (03) 6431 7848
or email [email protected]
Australian Red Cross forges partnership with Epilepsy SA
A
ustralian Red Cross Training
Services, in the course of its
training, became aware of the
lack of understanding about epilepsy
within the community. With the
assistance of a grant from Epilepsy
Foundation of South Australia
Australian Red Cross Training Services,
in partnership with The Epilepsy
Centre SA, has developed an Epilepsy
Awareness Program.
This program looks at the diagnosis
of epilepsy; the effect it can have on
the individual’s lifestyle; the possible
triggers for the condition and what to
do when a person has a seizure. In
addition, the program discusses the
personal impact of epilepsy across the
ages emphasizing the unique needs and
interests of particular groups. Some
of the topics which may be part of an
information session include: Childhood
Epilepsy; Making the Home Safer;
Epilepsy and Employment; Driving and
Epilepsy; Birth Control in Epilepsy and,
Epilepsy in Sport and Recreation.
This Epilepsy Awareness Program is
strongly recommended for anyone living
or working with someone with epilepsy
or for anyone who would like to know
more about the condition.
Please contact The Epilepsy Centre on
08 8445 6131 or Australian Red Cross on
08 8293 9200 to arrange a program for
your group.
Robert Cole, The Epilepsy Centre CEO with Pam
Fidler, Australian Red Cross Training Services.
3
Against all odds
The inspiring journey of Caitlin McOmish
D
r Caitlin McOmish, with
colleagues from the Howard
Florey Institute in Melbourne,
recently discovered that environmental
enrichment, or physical and mental
stimulation, reversed schizophrenia-like
symptoms in mice. This significant study
has just been published in the prestigious
Journal of Molecular Psychiatry and
may one day pave the way for new
treatments in schizophrenia and other
brain disorders.
Yet when Dr Tony Hannan, head of
the Howard Florey lab, and student
Caitlin McOmish planned the research
project little did he know that the student
working with him had experienced
environmental enrichment first hand.
For this remarkable young scientist, at
the tender age of 13 months, contracted
mumps and developed meningitis and
encephalitis, resulting in severe brain
damage and epilepsy. Critically ill for
five days with her life hanging in the
balance, Caitlin pulled through but was
no longer the normal, happy, gregarious
child she had been prior to becoming ill.
4
“She had lost the ability to talk, the
ability to walk, and lost a vast majority
of her muscle tone. To cuddle her was
like holding a bag of rice,” recalled
her father, Lachie “she was completely
unresponsive for quite a period after
the mumps onset”. Caitlin then began
screaming with intervening periods
of sitting still and staring, and while
medical opinion at that time was that
this would go away, it took almost a year
before she was diagnosed with epilepsy.
Her mother Janie said “Caitlin would
scream for hours on end with headaches.
It was heartbreaking for me as a mother.
She became even more distressed when
we made any attempt to cuddle her or
comfort her so the only thing we could
do was to leave her in her cot, and when
she wasn’t screaming, she would just
sit and stare. Even when other children
would be playing near her, Caitlin could
not engage with them trapped in her
world of absent seizures. At times she
had 30 seizures a day.”
It was at this time that Janie and
Lachie were told that she would never be
normal and there was little they could do.
But they weren’t ready to accept such a
poor prognosis, for Janie and Lachie had
already worked out a plan for Caitlin and
had begun implementing it. Lachie said
“ I found it illogical that a child’s brain
is capable of learning the day it is born
but not before it is born. The brain is
plastic and capable of change, therefore
it seemed logical that in the cases where
there had been damage that sensory input
and intellectual input could play a role,
perhaps, in remediating the effects.”
Recalling a documentary they had
seen on a revolutionary program for
Down Syndrome children that had
been developed in the United States,
and drawing from their own knowledge
(Janie’s teaching experience and Lachie’s
past studies in neurophysiology) they
came to the conclusion that a program
of active and passive exercise and major
stimulation may make a difference for
Caitlin. The germ for this belief grew
out of the fact that Janie had taken all
three siblings swimming from the time
they were six weeks old and what they
noticed was that the day Caitlin had
her swimming lesson was the only day
she was calm so they began taking her
swimming at 6am every morning and
then they would spend the rest of the day
stimulating her physically and mentally.
In the first 12-15 months they saw
dramatic improvement in Caitlin, and
in the following years, while there were
setbacks, she gradually improved.
In describing the program they
derived for Caitlin, Lachie said “it had
three phases: in the initial phase there
was intense concentration on physical
exercise: gross motor exercise, passive
exercise for hours moving her arms
and legs, putting her in swings and
other contraptions to provide physical
stimulus and also active exercise by
way of swimming… as her motor skills
improved we moved on to a process
of intellectual stimulation involving
a great number of toys, puzzles and
the like, constantly trying to keep her
entertained and to keep her moving
and concentrating, trying to reconnect
the damaged parts of her brain; and
following that they moved on to a
program of training in logic and training
in the structure of language.
“She was sent to a foreign language
pre-school and school where all the
lessons were given in French and that
process continued right through to year
ten. Caitlin was put under maximum
intellectual challenge but at the same
time she wasn’t encouraged to think that
she had a disability, she was encouraged
to think that if other children could do it
she could as well.”
Caitlin wasn’t wrapped in cotton
wool as she grew up. Lachie and Janie
made sure everyone knew that she had
seizures and what to do if they occur.
Caitlin was allowed to go and stay at
people’s houses and attend school camps
and if something happened they would
be notified. Their aim was treat her
as normally as possible but also give
her as much physical and intellectual
enrichment as they could possibly give.
Caitlin improved over time and her
seizures became almost non-existent
unless there was a major event: tests,
exams or her birthday which Janie
believes were probably triggered by
excitement.
When asked about growing up with
seizures Caitlin said “ I had always taken
the approach mum and dad had taken,
that everything was fairly normal, mum
and dad would let me do pretty much
whatever I wanted – so for me I was the
same as everyone else. I guess my mum
and dad did a really good job of making
sure that everyone who was going to
be around me was aware of what could
happen, so my life carried on as normal.
I always knew that I had epilepsy and
that made me a little bit different to
other people and that could be a bit of a
pain, but it was never made a big deal to
me, never thought it was a big deal, just
another aspect of who I was...
“I think the first realisation that it was
anything truly abnormal, as such, was
when one girl in Year 7 came up to me
and said she’d heard this terrible rumour
that couldn’t possibly be true because she
knew me and she knew that I was fine
and that it was horrendous that someone
would say something like this, and I was
like ‘Oh no what are you talking about’
and said it was that I had epilepsy. I was
a bit taken back, it never occurred to me
that epilepsy was different say, to having
blonde hair.”
“The medication I was on made me
a bit more tired than I would otherwise
be, and that created a bit of a problem
when I was trying to cram as much study
as you can, particularly in high school
when these hours get longer and you
need to stay awake, then it became a bit
of a hassle so, obviously, I had to be a bit
more careful not to exert myself.”
After finishing high school in
Canberra, Caitlin went on to study
science at the University of Melbourne
and has just completed her PhD under
the supervision of Dr Tony Hannan, at
the Howard Florey Institute.
Explaining the nature of their project
Dr Hannan said “ These kinds of studies
speak towards the extraordinary extent
of plasticity in the adult brain. We’ve
always known the developing brain is
plastic in the sense that it’s continually
changing and cells are being born and
cells are dying, but recent work is
suggesting that the adult brain, rather
than being a static organ has, what I tend
to call micro-development, in that our
brains really never stop developing. If
neurons are being born and connections
are being made then maybe this is a
form of development that continues
throughout our life and that may make
the brain unique in relation to other
organs within the body, and so at
different periods in our lives there are
different types of plasticity and part
of this is dictated by our genes in that
certain genes may make the brain more
plastic or less plastic and then there’s
the involvement with the environment
– mental and physical activity – that
actually dictates how the brain is
sculpted by experience – what we call
experience dependant plasticity.”
Upon learning the extent of the
enriched learning environment Lachie
and Janie had immersed Caitlin in, Dr
Hannan commented “Caitlin’s case
illustrates this plasticity of the brain.
The fact that she had severe brain
damage at this critical period in her early
development and through her parent’s
involvement and the lengths they went
to in order to stimulate her, together
with the brain’s own capacity to repair
itself, she’s gone on to do extraordinary
things and I’m sure she’ll go on to do a
lot more.”
Responding to Dr Hannan’s
observations, Lachie and Janie, said “ we
worked on the assumption that if it didn’t
do any good, it wouldn’t do any harm
and desperate times call for desperate
measures. We just couldn’t accept that
prognosis and do nothing’. Janie added
“ I think any parent does all that they
can for their children. I don’t think much
about what I’ve done for Caitlin, I think
what Caitlin’s done for herself.... and to
parents of children with brain damage,
never give up hope, there’s always
possibilities.”
Caitlin has not had a seizure for
five years now and no longer takes
medication. It has only been in the last
few years that Caitlin has become fully
aware of her illness as a baby and her
parent’s determined efforts to do all that
they could for her to have a normal life.
Graduation Day was a very emotional
time for Lachie and Janie. “We just can’t
believe how far she has come. There’s
nothing to say that this wouldn’t have
happened anyway, but she has surpassed
everyone’s expectations.”
And what does Dr McOmish think
about her incredible journey. “I’m
obviously very lucky…I count my
blessings every day, more and more, and
I have come to realize how it must have
been. It’s quite something…”
DC
5
How epilepsy can affect memory
Epilepsy & Memory
Michelle Bellon, PhD
Department of Disability Studies
Flinders University
South Australia
M
emory is one of the most important functions of our
brain, as it links our past and present, and gives us
a sense of continuity in time. Lapses in memory
are a frequent occurrence for most people. Forgetting where
we left the remote control, the house keys, a person’s name,
and not getting all the items on the shopping list is a cause of
great frustration. However, memory difficulties can also result
in debilitating effects on social, occupational and daily life.
People with epilepsy are at high risk of memory difficulties.
There are many different components of memory, so how does
epilepsy affect memory, and how can you make the most of
what you have?
Types of memory
Short-term (working) memory
This type of memory allows you to process information
from the start of this sentence to the end. Similarly, when
mentally calculating 23 times 7 in your head, you will need
to remember the numbers involved, visualize the calculation,
and hold the numbers in your head before you come up with
the answer (161). This requires a lot of temporary storage, and
once you have come up with the answer, the other numbers
involved in the calculation become irrelevant and are quickly
forgotten.
When reading, listening and calculating, we need to be
able to temporarily store information in order to complete a
particular task (eg listening to directions, finding the right
book on a shelf, playing chess or calculating how many
days till a holiday). However, once it has been achieved, the
supplementary or irrelevant information is no longer needed
and is quickly discarded.
Long-term memory
When most people think of memory, they consider long-term
memory. This is information that is stored for a long period
of time. Remembering your name, where you lived as a child,
what you did last year or even what you did a few minutes ago
are examples of this type of memory.
Long-term memory can be further divided into two types:
episodic memory which involves remembering events and
incidents (eg going to the hospital), and semantic memory
which involves knowledge about the world (eg the capital of
Australia, or the meaning of a word, or the ingredients for a
favorite recipe).
6
Seizures
Seizures are believed to affect the storage of memory in a
variety of ways. People with epilepsy (in particular temporal
lobe epilepsy) may have difficulties remembering past
information because major seizures can result in a period
of retrograde amnesia (inability to access old memories).
It is thought a longer history of seizures, including a high
frequency of generalized seizures and the experience of status
epilepticus can negatively affect memory function.
difficulties if you take high doses or more than one AED. In
contrast, some people will find that taking medication will
help with their memory. This may be because their seizures
are better controlled, rather than the impact of the drug itself.
Surgery
Some people experience increased memory difficulties
following temporal lobe surgery. Recent studies identify that
the majority of people who are at high risk of post-operative
memory decline can be reliably identified before the surgery.
Preoperative counseling is an important component of
ensuring you are aware of and understand the risks.
Following seizures (post-ictal)
Anxiety and depression
How memories are made
After a seizure, you may feel confused, fatigued, have a
headache, and/or process information slower than usual. It
is not unusual that your ability to attend, encode, store and
retrieve information will be affected at this time. This period
of post-ictal confusion usually goes away once you have had
time to recover. This time will vary from person to person.
However, some people find that their memory is affected even
after fully recovering from a seizure.
Your mood can impact your ability to attend to information,
learn and recall. When we are feeling happy, we tend to be
more open and alert, increasing our chances of learning and
recalling information. The more anxious or depressed we feel,
the harder it is to focus on information, which will negatively
impact our ability to remember. For example, it is much more
difficult to listen to and follow instructions when anxious that
we are running late.
Attending & encoding
Anti-epileptic drugs
Stress/fatigue
Nothing is likely to get into long-term memory unless we
attend to it. Attention is the critical first stage of the memory
process. Having epilepsy can impact your ability to attend,
slow your speed of information processing, and limit sustained
attention over time. Some people can feel overwhelmed by
the amount of stimuli (information) that is available. This
can include visual and auditory information (eg following
fast conversations, attending to relevant information on the
computer, keeping up with school/lectures). Important facts
may be missed (eg the last digits of a phone number or the
third direction). When we have difficulty with this first stage,
memory is affected because the information was not properly
received.
Anti-epileptic dugs (AEDs) have a number of well
documented side-effects, including impairment of cognitive
functioning. Some people may also experience sluggishness,
lethargy, and/or depression etc. Although it is not yet
understood how different AEDs specifically affect memory,
the impact on attention and memory is well acknowledged.
There is a higher chance you will experience memory
How efficient your memory is also depends on the demands
you place on it. If you are trying to perform many tasks
at once with a high level of stress, fatigue and distraction,
it is understandable that lapses in memory will occur.
Alternatively, having a highly structured and ordered lifestyle
with extensive use of memory aids will increase the chances
of making fewer errors. Keeping to a healthy sleep/exercise
One theory is that information in memory never disappears,
but instead becomes less and less accessible. Not being able
to remember events from our past can be one of the most
distressing aspects of memory difficulty, and a frequent
problem for people with epilepsy.
Storage
The second stage involves the permanent storage of
information in the brain. For some people with epilepsy,
information may “go through one ear and out the other”. This
difficulty in consolidating new information is thought to be
a problem of storage, and due to structural problems in parts
of the brain responsible for memory which are commonly
affected by epilepsy.
Retrieval
The final stage requires the brain to then find and recall
information. Some people describe difficulty with this process
as knowing the information is in there, but just being unable
to get it out. Time pressure and being put ‘on the spot’ can
negatively impact your ability to retrieve information quickly,
however you may find that later in the day (often when you are
thinking of something else) the answer may come to you. The
correct context can also help with retrieval of information. It is
difficult to remember information in isolation, however when
given further details (eg description of a holiday) you may
recognize and retrieve the information (eg name of the holiday
resort) you are trying to recall.
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We can’t change our memory but with these useful tips we can use what we
have more effectively:
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Lists for tasks – eg shopping lists
Displays – eg whiteboards, calendar, wall charts, post-it notes around the house
Diary - write future activities such as what you are going to do tomorrow, and names of people you are likely to meet
Keep a list of significant people, places and phone numbers on the fridge or notice board
Label drawers and cupboards
Explore technology – mobile phone alarms, wrist watch alarms, electronic organizers, computers, dictaphones, and PDAs (but remember – hi-tech isn’t always better!)
Ask for assistance – someone to prompt/remind you
Arrange for cue phone calls before important events
Timers and alarm clocks to remind you when to start/stop an activity (eg on oven, watch, mobile phone, TV, radio etc)
Arrange the environment – eg keep medication in a visible location, keep keys and phone together, always carry pen and paper to jot down notes
Break activities into small steps so that you don’t have to remember lots of things at once
Keep a regular routine
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Rem
em
b
to . er
..
Use a dosette box for medication
Use prompts, such as a diagram or script,
showing each of the steps you must follow
Rhymes (eg “In fourteen hundred and ninety-two
Columbus sailed the ocean blue” helps to remember the date 1492)
The place method – items to be remembered are imagined in a series of familiar places. When you need to remember them, you ‘look’ at the familiar places.
The story method – make up a story which connects items to be remembered in the correct order.
The pegword method – “one is a bun, two is a shoe, three is a tree” etc as a method to remember lists of items in correct order.
Turn numbers into letters – eg to remember phone numbers
Alphabetical searching – go through the alphabet letter by letter to find the initial letter of a name (eg does a particular persons name begin with A…B…C…Yes! D for Donna…)
Give yourself plenty of time to remember – don’t hurry
Combine a number of these strategies together
Remember, your lifestyle, interests and motivation will change over time –
what is most helpful will vary.
7
routine is important for people with
epilepsy to help maintain a balanced
lifestyle, and manage stress/fatigue.
Set realistic goals for what you can achieve
Mnemonics
Take sensible regular exercise and maintain physical health
One creative and effective technique
for remembering lists of words is to use
mnemonics.
There are two different forms, the first
of which involves visual imagery. Visual
imagery mnemonics can be performed
by identifying ten locations in your
home. Select them so that moving from
one to another is logical (eg front gate
to front door to hall to lounge to kitchen
to backyard etc). Imagine yourself
moving through your ten locations in
a consistent pattern without difficulty.
The next step is to think of ten items
and imagine them in these locations. For
example, if the first item is milk, you
could imagine a large carton of milk
sitting on top of the letterbox spilling
milk over the street. If the second is an
apple, you could imagine blocking the
front door a large basket of apples, and
so on. The same locations can be used
repeatedly.
The second type is verbal mnemonics.
Well used examples involve
Develop regular leisure pursuits
Develop the habit of planning and listing tasks
Plan weekend and holiday breaks
Identify particular sources of stress
Learn and participate in structured relaxation (eg tai chi classes)
Find quiet environments
Ventilate feelings with a significant supporting person
Join a group to share feelings and experiences; invest in group processes
Obtain counseling, such as cognitive therapy
Develop a support system within the home
Develop a support system within the community
T
8
Toba Schwaber Kerson DSW, PhD
Identify humorous moments and invest in humour.
remembering the acronym ROYGBIV
(red, orange, yellow, green, blue, indigo,
violet) to “Richard of York gains Battles
in Vain”. Another when remembering
the number of days in a month starts
“Thirty days hath September, April,
June and November. All the rest have
thirty-one, except that…” finishing with
provide people with epilepsy another
convenient way to get assistance”.
The aim of this project is to provide
families with instant access to support
and additional information following a
visit to their Neurologist or Paediatrician
or immediately post discharge from the
Paediatric Unit following diagnosis.
Issues such as prescribed medication,
impact on siblings, lifestyle changes,
school support and counselling will be
discussed.
It is a common occurrence that once
families arrive home; they are either too
overwhelmed with information about
their child’s diagnosis or unaware of
what support services are available to
them. This project will overcome some
of those issues and it will enhance the
professional services already provided
by the Paediatric Clinic.
Sharon Crowley Clinical Nurse
Consultant, Flinders Medical Centre
Variety Children's Centre stated that
“The innovation of combining the
services offered by The Epilepsy Centre
Bryn Mawr College, Bryn Mawr
Pennsylvania, USA.
(Rees, 2005)
an odd section on February and leap
years!
Determining your own verbal memory
cues can be creative and effective –
as long as you remember what the
acronyms originally stood for!
Epilepsy Seizure Clinic – first for South Australia
he Epilepsy Centre SA has
established an Epilepsy Seizure
Clinic within the Paediatric Unit
of the Flinders Medical Centre. This
collaboration is an exciting first for
South Australia. Mark Francis, Client
Services Manger of The Epilepsy Centre
and a Clinical Nurse Consultant, will
conduct the clinic. This means that
people living with epilepsy will have
greater and easier access to information
and advice.
This clinic has been established
because of demand. The Epilepsy Centre
receives numerous calls from parents
of newly diagnosed and previously
diagnosed children with epilepsy.
Parents struggle to either come to terms
with the disorder or are unsure of what
the meaning is for them in regard to
lifestyle, schooling, medication side
effects and the long term impacts on the
family unit.
Robert Cole, The Epilepsy Centre
CEO stated “there is huge demand for
our services and the Seizure Clinic will
Lasting
impressions
of seizures and
epilepsy in film
and on television
Strategies to reduce stress
with the Paediatric Clinic will ensure
that children living in the southern
regions of Adelaide are receiving
support and care”.
Mark will provide support through
clinic visits as well as servicing
inpatients which will establish ongoing
service provision throughout the child’s
life. He will also deliver Paediatric
Nurse education which will improve
and inform of the latest developments in
Epilepsy Care.
Sandra Hii, Registered Nurse, Flinders
Medical Centre, Paediatric Clinic added
“The specialist knowledge that Mark
brings to the hospital’s new Seizure
Clinic will benefit parents and Paediatric
Nursing Staff as well. In addition to their
Neurologist, parents will now have extra
support”.
Further information can be provided
made by contacting Mark Francis at The
Epilepsy Centre on (08) 8445 6131 or email
[email protected] or visit
www.epilepsycentre.org.au
Introduction
I began this work out of a concern about ill-conceived
and stigmatizing images of seizures and epilepsy in film
and on television. At the outset, it seemed to me that while
audiovisual media were becoming both more sophisticated
and more accessible, the information that they transmitted
about the etiology and treatment of epilepsy and seizures was
often antiquated and misleading. Thus, this exploration of
the persistence of certain portrayals of seizures in film and
television highlights the power of the media to stigmatize and
demonstrate how audiences delight in and are titillated by
others’ loss of control. Such depictions continue to make life
more difficult for those with epilepsy and leave one with this
question. Why do these depictions persist while representations
related to other conditions such as cancer and stroke are more
progressive?
Having collected data for 10 years, I now have a data set
consisting of 123 English language films, 68 films from Europe
and Asia, and 72 American television shows through which
colleagues and I study the incidence and characteristics of
depictions of epilepsy and seizures, factors associated with
these images, and their place, power and meaning within film
and television. The data set consists primarily of English
language film and television shows, but there are films in
French, Italian, Russian, German, Korean, Cantonese, Japanese,
Hindi, Marathi, Bengali, Danish, Hebrew, Spanish and Swedish
as well. I have created this unique and comprehensive data set
by consulting every source available to me. Over the years, I
have developed a network of social scientists, epileptologists,
media scholars and activists in several countries who continue
to provide valuable advice and consultation. To establish the
list, I’ve consulted many sources including: the United States
Library of Congress, National Epilepsy Library, Internet Movie
Data Base, TV.com, Literature, Arts & Medicine Data Base,
British National Film and Television Archive, British Film
Institute, L’Inathèque and La Bibliothèque Nationale de France,
and Rehabilitation International.
For the purposes of this research, in the general category of
seizures, I include (1) seizures in characters who are said to
have epilepsy, (2) seizures in characters who are said to have
some other condition, (3) seizures related to drug or alcohol use,
(4) seizures that are feigned, that is where someone pretends
to have a seizure in order to deceive others or pseudoseizures,
that is attacks resembling an epileptic seizure but having only
psychological causes, (5) an offhand or throw away category
in which, for example, someone is described as or describes
himself or someone else as “having a fit.” Normally, within the
emission, these events have been labeled as epilepsy, as being
related to epilepsy or a condition such as street drug use, but
sometimes they are seen as a reaction to electrical shock (for
example, One Flew Over the Cuckoo’s Nest, 1975, Meet the
Fockers, 2004; and The Bed Sitting Room, 1969). The research
is ongoing, and, therefore, I welcome not only feedback and
discussion with anyone who is interested but also suggestions
about films and television shows to add to the series.
Previous phases of the Study
In previous phases of this study, I have demonstrated how,
over time, directors use seizures to: (1) drive the narrative,
(2) enhance the overall mood of a particular genre, (3) try to
evoke specific emotional reactions in the audience, (4) support
certain personality and behavioral traits of the characters
having the seizures, (5) highlight qualities of other characters
through the ways in which they respond to the seizures, (6)
act as catalysts for other actions taken in by the audience but
often not recounted when the films are discussed or reviewed,
(7) enhance the voyeuristic experience of the film audience
as they watch the actions of characters watching the actions
of those having seizures; thus a conscious, most removed
audience watches the actions of conscious spectators in the
f ilm as they watch the unconscious actions of those characters
who are having the seizures. Not mutually exclusive, these
categories were built and filled in order to answer the over
9
arching questions related to the persistence of the images. In
the end, I believe that I have shown that the visual experience of
a tonic clonic seizure remains so arresting that its use is likely
to continue despite advances in treatment (Kerson & Kerson,
2006; Kerson. Kerson & Kerson 1999; Kerson, Kerson &
Kerson, 2000).
Conclusions drawn thus far
1) Directors have used images of tonic clonic (grand mal)
seizures since 1900 and continue to do so despite the work of
advocates. The earliest film in the series is Le Deshabillage
Impossible (1900. Dir: Georges Melies. Pathés Frères, fr). In
the film, a traveler spending the night at an inn finds that when
he hangs his coat and hat on a peg in his room, they return to
his person. The more rapidly he undresses, the more rapidly
his clothes return, and the process enrages him. He rolls on the
floor, then on the bed, and finally has what is named an epileptic
fit.
The first example that I have found on American television
is an episode called “Boy in the Storm” (1/3/1955. Medic.
NBC). In the episode, a young man of great privilege has been
homebound for seven years because his grandmother believes
that to be the correct treatment for his epilepsy. When she dies,
medical care is sought and with proper medication he is able to
resume his life. This is one of the most realistic and positive
depictions that I have seen.
Probably the most popular example in the series is the horror/
possession film, The Exorcist (1973/2000). During the first
half of the film, doctors explain that the child has temporal lobe
epilepsy. Over time, they change their diagnosis to demonic
possession but the discussions of epilepsy accompanied by
terrifying images of the child growing a goiter, having her
head spin on her neck, speaking in the voices of others and
attacking several people are horrifying. To understand the kind
of exposure that a film like this can have, it is helpful to review
some financial statistics. The Exorcist was first released in 1973
at a cost of $12,000,000 and restored for another $1,000,000
for its re-release in 2000. As of July 2007, it had grossed
$403,500,000 world-wide (http://the numbers.com/movies).
How many people have now have now seen this movie that is
billed as a realistic film about inexplicable events?
Still #1 – Medic: Boy in the Storm
10
2) These images heighten the moment, adding elements
of intensity and drama. They can show dimensions of past
experiences, interior lives and/or conflicts. For example,
in Cleopatra (1963. Dir. Joseph L. Mankiewicz, Twentieth
Century Fox), Cleopatra watches Caesar have a seizure and the
audience watches her watch him, all through an enormous eye
that is painted on the wall of his chamber. Cleopatra’s drive for
more political power and her attraction to Julius Caesar, as well
as Caesar’s concerns about his own power being diminished if
the public learns of his epilepsy are all illustrated in this scene.
In The Andromeda Strain, (1971. Dir. Robert Wise, Metro
Goldwyn Mayer), the senior scientist who hides her epilepsy
has a tonic clonic seizure in response to a flashing light; the
response of almost everyone around her is that she has caught
the andromeda strain, and they flee. In Gods and Monsters, a
speculation about the last days of James Whale, director of the
famous 1930’s Frankenstein films, Whale experiences what
appear to be temporal lobe seizures resulting from a stroke.
Symptoms include olfactory and visual hallucinations which
allow the protagonist to experience himself at different times
of his life and bring people who had been important to him
into his present. In one scene, when as an old man he is being
photographed with the equally old stars of his Frankenstein
films, the camera’s flash causes Whale to have a seizure in
which he is simultaneously with the actors at their ages when
they played the characters, at their present ages and with the
monsters.
3) Images are often associated with insane, violent and
victimized characters suggesting that people with seizure
disorders are unpredictable, uncontrolled can be brutal. Among
the many examples are The Terminal Man (1974), La Bête
Humaine (1938), and The Flying Camel (1994).
4) More important than character development in
relation to the person having a seizure is that of others who
are reacting to the event. In these examples, a conscious,
removed audience watches the actions of spectators in the film
as the latter watch the unconscious actions of the characters
having the seizures. The fact that the character having the
seizure is unconscious for the event heightens interest relates
to how the spectator is led through the film experience.
Audiences continue to find images of individuals falling to the
ground unconscious, limbs twitching, foaming at the mouth,
making primitive sounds, unaware of the reactions of people
around them, to be fascinating. This voyeuristic and titillating
Still #2 – The Exorcist
Next steps in the research – some comparisons
Now that I have amassed this series, I am beginning to
compare depictions cross culturally as well as in film and on
television. In the series, I have 27 French films, 14 in Indian
languages and lesser numbers in other languages. My first
step is a comparison of films and television shows in French as
opposed to English. I am beginning there for several reasons.
The tradition of excellent filmmaking in France, a rich film
and television literature, and the presence of national film and
television archives make France a logical choice. Also, because
I am able to work in French, I can communicate with a broad
range of individuals concerned with the topic.
I plan to assemble a series of French television shows
depicting seizures and now have begun to compare French
and English language films. French language depictions are
very creative. Carnage (2001) makes extraordinary use of a
child’s hallucinations. Les Amants du Nil (2002) shows epilepsy
through the eyes of the individual with the condition. The
central character’s explanations of her seizures are among the
most imaginative any in the total series. She likens a seizure to
being dead and then returning to life. This theme is played out
in other dimensions of the film and is most closely related to A
Matter of Life and Death (1946), an English language film in
which the central character has hallucinations about a heavenly
messenger’s trying to bring him to heaven because he has
escaped death.
The use of visual hallucinations seems to be the most original
part of any of these depictions, and, of course, being brought
into the mind of a character is the height of intimacy for the
audience. For various reasons, the most interesting finding thus
far is that almost all of the depictions in French films draw the
audience toward the character while this is not generally true
for depictions in English language film. Even the most violent
French characters with seizures evoke great sympathy from the
audience while most of those in English language films do not.
Specifically, I am working with four variables: (1) negativity
of portrayal, that is negative dimensions of character, poor
reactions of others or bizarre treatments that would contribute
to a person with seizures’ being presented in a demeaning or
frightening light, (2) the effects of feigned or pseudo-seizures
as compared to the effects of seizures that would more likely
be related to epilepsy; (3) the level of violence in the films in
which seizures appeared; and (4) the use of visual, olfactory and
auditory hallucinations as a means of conveying the characters’
experiences of having seizures.
There are intriguing distinctions. All but five of the French
films include characters with negative attributes, such as
emotional disorders, including depression or drug use, and
all English language films have some degree of negativity.
However, within this negativity, there are differences. For
example, in the silent era, all but one of the English language
films are tragedies whereas the French films are comedies.
While all of these films were made before 1930 and are
seldom viewed today, the differences are remarkable. The
comic renditions do poke fun at the epileptic condition but in
very playful, jesting, silly ways. For example, La Redingote
Epileptique (1913) is about a coat that, when donned, makes
one in a jerky, uncontrolled fashion and gets each of its wearers
into enough trouble to pass the coat to someone else. However,
in the tragic examples, a character suffers extreme sorrow or
is brought to ruin often as a consequence of some inner failing
or an inability to cope. In the silent English film, The Supreme
Temptation, the woman with seizures is a French working class
girl whose seizures have ruined her life and now endanger the
life of the English physician whom she has married. Thus, there
is a divergence in depictions of seizures in English- and Frenchlanguage film even before there are “talkies.” I am considering
four types of negative depictions: offensive characterizations,
bizarre treatments or associations, horrific reactions by others
to the seizures, or seizures feigned to move the film in negative
ways. There are examples of each type in both French and
English language films, but at this point, I am only prepared
to say that the depictions in English language film are more
extreme.
The next category is that of feigned or pseudoseizures. In a
feigned seizure, a character consciously pretends to have and
Still #3 – The Terminal Man
Still #4 – Drugstore Cowboy
experience is not very different from lay interest in the films
made of Charcot’s hysterical and epileptic patients at the end
of the 19th century. Overall, such images remain icons, holding
audience attention with little effort. Examples include I Pugni
in Tasca (1965) Le Hussard sur Le Toit (1995) and Kaos (1984).
5) Seizure representations are increasing because they
complement the current emphasis in film and television on
violence, drug use, certain mental illnesses and extreme
personality characteristics, all themes having to do with the loss
of control that is a primary part of the filmic depiction of a tonic
clonic seizure. Examples here include Whacked, an episode of
CSI Miami (2005), Jangwha Hongryeon (2003), El Aura (2005),
and Deceiver (1997).
11
thus acts out the symptoms of a tonic clonic seizure. One example
is the film Drugstore Cowboy (1989) in which a young woman
who is part of a gang of drug addicts pretends to have a seizure in
a drug store so that the pharmacist will rush to her aid while her
cronies steal drugs and run off.
Different from a conscious pretense that is true for a feigned
seizure, a pseudoseizure involves an individual unconsciously
using the symptoms of a tonic clonic seizure for psychological
reasons. An example would be Passion d’Amore (1981) where a
very unhappy young woman uses such events to protect herself,
or Priest (1994) in which a teenager has such episodes in order to
protect herself from being molested by her father. Images differ
again in films of the two languages. For example, five comedies
depict silly images of exaggerated symptoms. Only once in a
French film does someone feign a seizure while there are Frenchlanguage portrayals of three pseudoseizures. Of 14 such examples
in English-language film, there are 11 feigned seizures and three
pseudoseizures.
In relation to violence, only one French film (La Bête Humaine,
1938) portrays seizures in a violent character, and his violence is
understood to be non-volitional and, otherwise, separate from his
character. Eight films (28%) have violent themes related to war,
drug use, or gross mistreatment. The English-language series
has 36 characters with seizures who carry some level of violence
within themselves, and almost 80% of the films have violent
themes.
Differences found between English language film
and American television
In studying the data set of 64 examples drawn from American
television shows, I have been thinking about ways in which to
differentiate television portrayals from those in film including:
(1) that these depictions are often part of weekly television shows,
(2) the genres are different, (3) the depictions seem to be more
negative over time) and (4) as the numbers of channels proliferate,
there is always greater competition for audience share. First,
seizures are used so frequently on some shows that they might
subtly influence the development of the narrative. For example,
since 2005, House has had 12 episodes with characters portraying
seizures and Grey’s Anatomy has had 10 such episodes.
However, I am most interested in continuing characters who
become a part of the overall narrative of the show. Four television
series have used continuing characters with seizures or who
say they have epilepsy. In Rome (2005), one main character is
Julius Caesar who is known to have had epilepsy. Huff (2006)
has a character who pretends to have epilepsy in order to avoid
prosecution for vehicular homicide. In Deadwood (2004), a
minister with epilepsy is seen on three episodes in the last of which
he is smothered to death while having a seizure. On The Young
and the Restless (2006, 2007), a long-running daytime soap opera,
a continuing character has epilepsy that he believes allows him
extrasensory experiences.
A most positive portrayal that I have seen was an episode called
“Man Hunt” (11/3/00) on Nash Bridges, a police procedural.
Antoine, a young police officer who had served in the Gulf War,
has a seizure as he stands over a captured thief who happened to
have been his sergeant in the war. The ambulance tech who has
been called to the scene says, “He’s fine. He had a grand mal
epileptic seizure. He’s fine unless he lets his prescription lapse
again.” Antoine says, “I’ve had 3 seizures in the last 10 years. If I
take my meds. I’m fine.” The head of his unit says, “Don’t do that
to my men again, and don’t do it to yourself. Now go home and get
some rest.” Unfortunately, this episode was one of the last in the
12
six year series, and Antoine was not featured again, but there was
great potential in that character.
Also, television genres are different from film, and it is possible
that the genres, themselves, be they crime, action, comedy,
drama or adventure, affect the portrayals. Third, I have found
that television portrayals of seizures and epilepsy have become
more negative over time. I have already described the highly
sympathetic character in Medic. This is also true for a in a double
episode of Dr. Kildare (1964. “Tyger, Tyger,” Dir: John Newland,
NBC.) in which the character with epilepsy is smart and capable.
The most contemporary depictions show less concern for the
person having the seizure. The most horrific example is from
The Sopranos (2004. “Two Tonys” (3/7/04). Dir: Tim Van Patten,
HBO), one of the hottest shows on American television. In the
final moments of the first episode of a new season, two members
of the Soprano family are leaving a restaurant when the waiter
comes out to complain about the paltry tip that they had left him.
In response, one man hits the waiter in the head with a brick. The
waiter has a tonic-clonic seizure and the family members mumble
"don't these people know they’re supposed to take their medicine.”
They shoot and kill the waiter; then they take back the money they
had left to pay the bill. To them, he is a nameless, insignificant
object.
Finally, the numbers of channels and shows have proliferated
with television’s expanded capacity to transmit. Therefore,
television shows are competing for the attention of the viewer.
Showing someone having a seizure seems an easy way to capture
attention. In fact, while there is only one example of a seizure
being used before the opening credits in a film (JFK, 1991), in
television, there are many examples of seizures being used both
before the opening credits and as parts of previews of upcoming
shows. So, in my opinion, the hope is to have continuing
characters in popular shows whose epilepsy is intriguing but who
also educate through positive responses to well-managed treatment.
Thus, I was tremendously heartened when it was announced that a
long-time star of The Young and the Restless would be diagnosed
with and treated for epilepsy.
The Young and the Restless – a great opportunity
In 2006, Tony Coelho, President of the Epilepsy Foundation
of America announced a collaboration between CBS Television
and the Epilepsy Foundation. Episodes would focus on Victor
Newman whose behavior has changed since his car was hijacked.
He has become a more gentle man, even turning over control of
Still #5 – The Sopranos Two Tonys
his business. Those around him think that is due to a new attitude
towards life, but hallucinations and blackouts lead to a diagnosis of
temporal lobe seizures.
In fact, Victor’s epilepsy has so far been featured in more
than 20 episodes, and this is the first continuing character with
epilepsy that I have found on American television. The only other
briefly continuing characters that I have found were a minister
with epilepsy who was featured on Deadwood (2004. HBO), but
he was killed off after a few episodes. In its second season, a
Showtime series called Huff, featured a character called Dauri
Rathburn, played by Sharon Stone, who twice told those enforcing
the law that she was not responsible for her actions because she
had epilepsy when, in fact, she did not. The Young & the Restless,
with a daily audience of 6,000,000, presents a different kind of
opportunity.
Despite the collaboration between the Epilepsy Foundation
of America and CBS, depictions of Victor’s management of his
epilepsy mirror many of the same old themes related to concerns
about being seen as weak or treated like a child, searching for
herbal and other nonmedical solutions, hoping for a quick fix
through surgery, naming of seizures as paranormal and/or religious
experiences, relating seizures and uncontrolled violence, and
confusion of epilepsy with some kinds of psychiatric illnesses. In
the first of these television episodes (7/18/06), Victor learns that
he has temporal lobe epilepsy. He befriends Jack Abbot who has
been a bitter business enemy. While Victor’s attitude changes, Jack
does not; he convinces Jack to sign away a business interest and
encourages him to stop taking his epilepsy medicine.
Victor tells Jack that he does not want to appear week and
reports that his condition has provided feelings of peace, deep
understanding, paranormal visions and enlightenment. Next
(7/24/06), Victor tells Jack, that he is not taking his medicine, is
leaving on a quest and that Jack is to keep this a secret. As part
of the pursuit (8/4/06), Victor visits a blind friend, a spiritual
and religious person whom he hopes will guide him towards
understanding his condition. Keeping epilepsy a secret, Victor
talks instead of visions and spiritual awakenings. One day,
Victor’s friend returns to find him having a seizure. Afterwards
(8/7/06), he says he is afraid, then appears to “zone out,” and
hallucinates hearing music. His friend mentions that perhaps
his visions are religious. Later, (8/25/06), Victor says that he has
stopped his medication because of harmful side effects. Home
to find a better solution (8/28/06), Victor is seen cutting up an
apple. His cutting becomes violent and he begins to mutter about
killing the man who kidnapped his daughter-in-law. In a later
episode (8/31/06), Victor finds his daughter in law at the gym,
shows her how to box. His punches turn ferocious and, afterwards,
he remembers nothing. On 9/11/06, Victor thinks that everyone
is laughing at him, begins to hear voices calling his name, and
barricades himself in his house with a gun. A physician says
that this is a reaction to his medication, and he is admitted to a
psychiatric hospital because he is a danger to himself and to others.
In another episode (9/15/06), he opts for brain surgery in lieu of
medicine. In the next episode, he seems to be daydreaming and is
depressed. After a nap, Jack has a seizure while trying to put the
dog’s collar back on. His coordination seems compromised, and he
decides that some natural teas may quell his seizures. In the last
episode in the series that I have collected (9/26/06), Victor says that
he does not wish to be treated like a child or an invalid.
Thus, I agree with Mr. Coelho that featuring a continuing
character with epilepsy is a great solution to educating the public,
particularly if the series will allow for educational messages
regarding correct responses to seizures and the importance of
conferring with one’s physician in order to understand the risks
in stopping a recommended treatment. Of course, the problem
is that these depictions of epilepsy, of individual seizures, and of
the reactions of the person with epilepsy as well as those around
him are fictive creations that are used to enhance the moment and
the story. This is a great start, but we will all have to continue to
encourage directors to use images of seizures and epilepsy in ways
that will not only enthrall but educate.
Why continue to be concerned about these images
In thinking about the impact of these images, one notes that
as treatments for epilepsy continue to improve, most people may
never witness a seizure. Thus, fictive depictions will increasingly
represent epilepsy in the minds of the public (Kobau & Price,
2003). It is important to note here that the average American
watches more than 28 hours of TV each week and the average
Parisian watches 22 hours. The great stigma attached to the
illness means that better treatment encourages more of those with
epilepsy to keep the diagnosis a secret because they worry that
disclosure will cause people to isolate them or treat them punitively
(VanBrakel, 2006). Keeping the secret means that their associates
do not learn about the condition and continue to think of it as
related to fictive images. Because the visual experience of seizures
remains so enthralling, its use is likely to increase particularly
on television. As the public has less personal experience with
seizures, directors may become more concerned with what the
image adds to the presentation and less interested in accurate
portrayals. The hope, then, lies in finding ways to use the power of
film and television to inform and educate the public especially by
having continuing characters on television series portray epilepsy
as a condition that can usually be managed very well.
A suggestion for advocacy groups
My suggestion for now is that since we have at least have some
models available from Deadwood, Huff and the Young and the
Restless, advocacy organizations might sponsor contests in which
their constituents write in characters with epilepsy for ongoing
shows. Perhaps, the winning characterizations will be adopted by
the series. The more such positive partnerships, the better.
References
Kerson J. F., Kerson T. S., and Kerson L. A. (1999). The depiction of
seizures in film. Epilepsia 1999; 40:1163-1167.
Kerson T. S, Kerson J. F., and Kerson L. A. (2000). She’ll have a seizure
maybe: Then we can watch. Social Work in Health Care 30:95-110.
Kerson, T. S. and Kerson, L.A. (2006). Implacable images: Why
epileptiform events continue to be featured in film and television (with L.A.
Kerson) Epileptic Disorders. 8(2):1-11
Kobau R, Price P. (2003). Knowledge of epilepsy and familiarity with this
disorder in the U.S. population: Results from the 2002 HealthStyles survey.
Epilepsia 2003; 44:1149-1454.
Van Brakel, W. H. (2006). Measuring health-related stigma – A literature
review. Psychology, Health & Medicine: 11(3): 307-334.
Toba Schwaber Kerson DSW, PhD is Professor in the
Graduate School of Social Work and Social Research at
Bryn Mawr College, Bryn Mawr, Pennsylvania, USA. She
is the author of five books including Boundary Spanning: An
Ecological Interpretation of Social Work Practice in Mental
Health Systems and Understanding Chronic Illness and many
articles, is on several editorial boards and is Book Review
Editor for Social Work in Health Care.
13
27th Int. Epilepsy Congress, Singapore
8-12 July 2007
Christine Walker
I
n July this year I attended the ILAE
and IBE Epilepsy Congress in
Singapore in my capacity as Acting
Social Research Officer for Epilepsy
Foundation of Victoria. I was particularly
interested to hear about recent social
research and some of the issues that impact
on people with epilepsy.
With speakers from the developed
and developing countries, topics
covered the full spectrum of researchpharmacological, medical, surgical and
social. In this article I can only provide
a small sample from four full days of
presentations. I have chosen topics that
might be of greatest interest to our readers.
Generic medications
The conference opened with
presentations about the use of generic
AEDs. It was noted that generic
medications are extremely welcome in
poorer and underdeveloped countries
where branded AEDs were not always
available, even though these drugs
are regarded as essential drugs in all
countries.
It became apparent that there was
broad concern amongst all neurologists
about generic AEDS. It was not just a case
of switching from brand name AEDs,
although this is a concern for patients, but
more to the fact of how bioequivalence
is quantified. In the United States, for
example, switching to generic phenytoin
in elderly patients have had profound
effects. There are differences in the
absorption rates of branded and generic
carbamazepine and the coatings on generic
sodium valproate can aggravate some
gastric conditions.
Peter Wolf from Denmark presented an
issue around generics in Denmark where
legislation enforces generic substitution,
though the patient can choose to pay
more for the brand medicine. When the
patent for lamotrigine ran out in 2006
the Danish Epilepsy Centre began by
collecting significant data about the
bioequivalence of generic lamotrigine.
Their evidence showed that even small
differences between the generic and
branded medications had an effect on
those who used it. However, the Danish
Drug Agency was not impressed. Finally
14
the Danish Epilepsy Centre met with
the Health Minister and explained how
dangerous these differences could be.
The result has been that the Minister is
willing to adopt a program where those
who are at high risk of poor outcomes on
generic substitution will be able to get an
exemption from their use and pay the same
price for the branded medication.
The session concluded urging authorities
to analyze more closely bioequivalence
ranges when approving generics.
Much of this discussion was relevant to
the Australian situation where there are
similar concerns about substituting brand
medication for generic medication. At
the same time, it would appear that the
provision of cheaper generics in developing
countries will assist many people with
epilepsy to commence medication for the
first time.
Reducing stigma in epilepsy
There were many discussions about how
stigma is experienced by most people with
epilepsy worldwide. Perhaps the most
poignant presentation spoke of people with
epilepsy in Africa, where some 90% of
people with epilepsy receive no treatment,
which means that many of the myths about
epilepsy remain. Mortality and morbidity
in epilepsy is also increased where it is
associated with burning and drowning.
In Africa where rates of HIV/AIDS are
extremely high people with epilepsy
and HIV/AIDS have problems with their
drugs interacting (where they can afford
them). In most parts of Africa there are no
neurologists and health care is delivered
by nurses who are not trained to deliver
AEDs. These problems are made worse
where there are no health services and no
health infrastructure at all.
In this context, stigma remains
unaddressed. In Zambia for instance 30%
of Zambian clerics believe epilepsy is due
to witchcraft, while in Tanzania, perhaps
70% of the population believe epilepsy is
contagious. The consequences of such
beliefs are very serious indeed. In 2003
there was a famine in Southern Zambia
and people with epilepsy were some of
the most at risk. Local village headmen
left them out of the census, they did not
get food from the World Food Bank and
in losing weight their phenobarbitone
dosage (those fortunate to have access
to it) became too high. However, stigma
takes it toll even in more settled times.
A recent survey showed that people with
epilepsy in Zambia had less education,
fewer marital opportunities, fewer living
children, and poorer housing. They often
had to travel long distances to get water
and were at risk of drowning if they had a
seizure at this time; they often cooked over
open fires with similar risk exposures and
women with epilepsy were more subject to
physical abuse and rape.
The value of patient
organizations
The consequences of stigma are not
limited to Africa, of course, and are
experienced to a greater or lesser extent
the world over. Patient organizations
have been formed to address social and
emotional issues including the impact
of stigma on people with epilepsy. The
Jamaican Epilepsy Association was
formed by a mother of a child with
epilepsy, a similar story behind the
development of many of the Epilepsy
Foundations in Australia. One of the tasks
taken up by the Jamaican group have been
to work at changing attitudes towards
Jamaican people with epilepsy driving.
Seventy per cent of Jamaicans are against
people with epilepsy driving, regardless
of their seizure control or their diagnosis.
Another task is to lobby the government
to include AEDs in the pharmaceuticals
covered by its program. The Jamaican
Association also provides remote services
using a bus for its outreach programs.
I came away from the conference feeling
that so much that has been achieved in
Australia through work undertaken by all
the State-based foundations, the Epilepsy
Society of Australia and JECA. But there
is so much more to do! Issues relating to
attitudes towards epilepsy; issues related
to driving and epilepsy; the costs of living
with epilepsy and the quality of life of
people with epilepsy require vigilance
and research. The aim should always be to
improve the quality of life for people with
epilepsy. The value of these conferences
are that they provide much needed
information and the inspiration to continue.
Epilepsy Research at Flinders
Members of the ‘Rat Lab’
T
he Epilepsy Research Group at
Flinders University and Medical
Centre conducted its first
experiments in a laboratory shared with
others in the early 1990s. Originally two
researchers were involved – now there
are eight, working in two laboratories we
refer to as the ‘Rat Lab’ and the ‘Human
Lab’.
The first studies we carried out were
on absence epilepsy (petit mal) in a
strain of rats that were spontaneously
susceptible to the disorder. Basically
we were hoping to find that the disorder
was purely genetic, but we had many
surprises and found evidence for both
genetic and environmental factors in our
rat strains. Needing a more definable
epilepsy problem, we changed our focus
to convulsive seizures.
Absence Epilepsy Studies
We did learn from these early studies
and Dr Lorraine Mackenzie, who has
now left the Flinders Epilepsy Group,
used this strain of animals with absence
epilepsy to reveal something most
interesting. We knew that, just as in
humans, the attacks of absence in the
epileptic rats are associated with striking
high voltage EEG changes. So, Dr
Mackenzie recorded attacks from many
subregions of the brain, including quite
deeply placed areas. She compared these
natural absence attacks with epileptic
spindle attacks from animals treated
with drugs to cause epilepsy, and she
also compared the natural attacks with
some of the episodic EEG patterns
that appear during normal sleep (see
figure). What was apparent was that
all of these episodic EEG patterns not
only had similar EEG appearances, they
Back row (left to right) Dr Marita Broberg, Mr Sean Fitzgibbon, Mr Angus Wallace, Dr Kenneth Pope.
Front row: Dr Brada Shimmin, Dr Lorraine Mackenzie, Prof John Willoughby.
also occurred with almost the same
distribution throughout the brain. This
study is now one amongst other studies
from overseas labs to show that epileptic
activity is best understood as being a
modification of natural underlying brain
behaviours. Some readers familiar with
myoclonic jerks as part of their epilepsy
will be interested to know that their
day-time jerks are probably very closely
related to the jerks that many individuals
without epilepsy experience just before
falling asleep at night. Absence attacks,
similarly, are also closely related to
episodes of EEG activity occurring
during stages of normal sleep.
Convulsive Epilepsy Studies
In our studies of generalized tonic
clonic convulsions, we administered
carefully chosen drugs to our rats. We
will describe findings from these studies
in much more detail in later articles.
What is of interest now, however, is that
the convulsion-causing drugs caused
the EEG to change in a most unexpected
way that again suggested that natural
brain rhythms were involved in an
epileptic tendency. The natural brain
rhythm in these studies is the EEG
rhythm which brains use when thinking.
These EEG rhythms are very, very fast.
To illustrate how fast: in deep sleep
we have brain rhythms around 3 per
second. A little faster is the resting alpha
rhythm which is around 10 per second.
However, when we think, the brain uses
EEG rhythms around 40 per second!
What we found in our animals after they
had been given the convulsant drugs,
in the period of time before having
major convulsions, there was a striking
increase in the strength of 40 per second
EEG rhythms. It seemed that the normal
‘thinking rhythms’ of our animals were
being intensified by the epilepsy-causing
drugs. This was a remarkable and
unexpected finding. It again indicated
that epilepsy is likely to be related to
changes in ‘normal’ brain rhythms –
at least as far as we can tell from our
animal studies.
In the next issue, we will tell you more
about these rhythms and also what we
have been able to find out in humans.
Episodes of brain activity during an absence attack and after a convulsant drug (picrotoxin) and during two forms of sleep, one due to a sedative drug (barbiturate)
and one due to natural sleep.
15
Denise Chapman speaks with
World champion & Olympic cyclist
Marion Clignet
tenacity and epilepsy:
a potent mix
H
i there, my name is Marion Clignet,
I am Franco-American (my parents
are French) and I was born and raised
in the USA. I discovered at the age of 22
that I have epilepsy and would have to take
medication for the rest of my life. Since then
I made a promise to myself and to those who
may suffer from any obstacle in their path
that nothing would get in my way when it
came to achieving what I set out to achieve….
so with epilepsy in tow I’ve since won 6 world
titles, 2 Olympic silver medals and over 180
races world wide…..
DENISE: When did you discover your
passion for cycling?
MARION: I discovered my passion for
cycling when I lost my driver’s license for one
year due to my first seizure. I decided that my
bicycle would be an excellent replacement for
my car still allowing me to get to work and
back and even better giving me a new sense
of freedom and independence. Every day I
rode I wanted to push harder and go faster!
16
DENISE: What drove you to pursue
a career as an elite sportswoman? What
goals did you set for yourself? Your
dreams?
MARION: Never, not once….I’m not
even sure I would have come this far in
sports if I hadn’t been diagnosed with
epilepsy.
MARION: As I rode to work and back
every day in my first year riding I kept
wanting to break my time going there or
coming home….I finally tried a race and
loved the adrenaline, excitement and there
was a whole world for me to discover….I
had always dreamed of the Olympics as
many children do….working in a gym
where members of the US bobsled team
trained gave me the idea that I could train
with that goal in mind as well, and time
would tell me if it could become a reality
or not. My dream was to make it to the
very top of my sport, race with the best
and win!
DENISE: When did you first experience
discrimination due to your epilepsy? How
did you respond?
DENISE: How did a diagnosis of
epilepsy impact on your dreams?
MARION: I was 22 when I was
diagnosed and hadn’t yet started riding
competitively. The diagnosis drove me
to ride because the result was I couldn’t
drive for one year. I began riding 30kms
to work and back every day to the gym
where I worked as a fitness instructor and
programs director. Fitness became very
important to me and was a very good
outlet for any frustrations I felt with the
diagnosis. I honestly didn’t understand
the whole ‘taboo’ thing that was projected
with the diagnosis so I can only say that
finding out I had epilepsy made me want
to push myself harder to ensure I didn’t
have any excuse not to make it to the top.
DENISE: Did the medication pose a
problem for you?
MARION: The first medication was
a drama, I slept 19 hours a day and was
taking a full load at university. I had to
convince my neurologist that this wouldn’t
work and through trial and error and team
work we found a tolerable treatment (at the
time) so I could live a more active life.
MARION: I experienced discrimination
once because of my epilepsy, when the
US team coach was choosing the team to
compete at the world championships in
1990. I was clearly one of the strongest
members of the group being selected
but was told that I couldn’t participate
because having epilepsy made me a
risk. I responded by using my French
passport, moving to France and winning
my selection on the French national
team….and going on to win the world
championships the following year as well
as 5 more times after that…
DENISE: They say ‘one door shuts
and another door opens’. By moving to
France you certainly turned adversity into
opportunity.
MARION: I have always felt that
growing up ‘bicultural’ I would have to
live in France at some point to see if I
was French or American or just a mutt….
this was giving me the chance to live that
side of me that was yet undiscovered. I
was very grateful to be given a chance
but I proved my worth to the team before
they selected me by winning and working
hard for the team at top races. I felt after
every top result that I could and still had
to improve, always work harder and never
take anything for granted.
DENISE: We hear all the time about
drug tests for elite athletes. What was the
view taken regarding your medication?
MARION: Any medication for epilepsy
is anything but a boost for an elite athlete,
believe me. I did think or dream from time
to time of what it would be like training
free of meds…..
DENISE: How did epilepsy impact on
your aspirations?
DENISE: Have you ever have a seizure
while competing?
MARION: Epilepsy made me push
myself harder. I didn’t want to have
an excuse not to make it to the top and
perform at my very best because of
something I couldn’t control….so I pushed
harder and went faster!
MARION: I had a seizure while
warming up for a race so the start was
postponed for a good half an hour. I finally
started the race and won! I wouldn’t
recommend doing this often though!
DENISE: Did it ever occur to you that
having epilepsy would be a barrier to
achieving your goals?
DENISE: From 1991 to 2000 your
record speaks for itself. Your personal
achievements are remarkable and
inspirational, especially competing in such
a gruelling sport. All this, and epilepsy
too! You ‘officially retired’ in 2004, but
that has not stopped you from pursuing
your passion and ‘addiction’ to sport. What
is in your line of sight these days?
MARION: Well, I run 40-85kms
a week and I ride my bike anywhere
from 100-450kms a week. In Oct I’ll be
running the Chicago Marathon. I ran a half
marathon in Toulouse Sept 16 and came
in 3rd, also placed 3rd in my first triathlon
and an international duathalon…I had a
bit of an injury for both so running was a
mission but I hope to win a few duathalons
next year and maybe try a middle distance
triathlon. Since ‘retiring’ I worked for a
short while as sports director of the New
Zealand national team and for the last
two years I’ve worked as director sportif
and coach of a French men’s elite 2 team.
Presently I am looking for work so if
anyone who reads this has a job offer???
DENISE: Marion, you have given so
much to the sport of cycling, and it, in
return, has been enabled you to live your
dreams. Only recently you travelled to
Rwanda to support Project Rwanda and the
Rwandan cycling team. What compelled
you to lend your support to this project?
MARION: I saw the movie Hotel
Rwanda and it really saddened me that
people can be manipulated through various
lies and beliefs, resulting in genocide. I
then watched other movies on the genocide
such as Shooting Dogs, and read what I
could. I wanted to do something positive,
to let the Rwandan population know that
they weren’t alone, that there were people
thinking of them. When I discovered
Project Rwanda (www.projectrwanda.org)
I saw that I could help, support the project
and try Rwandan coffee which is excellent!
This really gave me a chance to discover
an amazing country, to run and ride over
hill and dale through villages, test myself
in another world….I will go back! The
Rwandan people represent a will to move
forward that I’ve rarely seen elsewhere….
DENISE: Marion, retiring from
competitive cycling may have brought to
a close one chapter in your life, however
one chapter does not make a book. Your
passion and commitment tells us there
are many more pages yet to be written.
Thank you.
Postscript: The Chicago Marathon was run in
appalling heat conditions on Oct 7. Marion
placed 1811 from 45,000 participants!
17
Superannuation
& chronic illness
Protect your rights!
If your illness has progressed or work is becoming a bit difficult and you are thinking it is time to either
reduce your hours or leave completely, it is wise to get good advice before telling your employer. Under
some insurance funds you can lose your right to claim some disability benefits if your employment is
terminated for reasons other than disability. If you stop work because you have resigned or because you
have become redundant, it can make disability claims harder to negotiate and your rights of appeal may
also be affected. Here John Berrill gives some practical advice.
What is Superannuation?
Superannuation is a long term
savings plan to provide income for your
retirement. Most workers are covered by
compulsory workplace superannuation
with their employers required to pay the
equivalent of at least 9% of their wage
into a complying superannuation fund.
Some workers make additional personal
contributions. When you retire your
superannuation is paid to you either as a
lump sum or a superannuation pension.
It may also be paid to you or your family
if you die or become too ill or disabled
to work
In addition to your work
superannuation, you may also have
private superannuation, life insurance or
income protection insurance etc.
Work super has been compulsory since
1992. Employers must pay at least an
extra 9% of your salary into a super fund
if you earn at least $450.00 a month and
if you are between 18 and 70 years old.
Your superannuation salary will
usually include bonuses, allowances
and leave payments but not overtime or
workers’ compensation payments.
Some industrial awards or agreements
provide super benefits in excess of the
compulsory superannuation, e.g. super
on overtime or make-up pay or an
additional 3%. Many subcontractors,
couriers, cleaners, owner/drivers and
child care workers will qualify as
employees for super.
From July 2003, your employer
must make super contributions at least
every 3 months - although many pay
contributions every month.
Not all super policies include extra
18
benefits for disability and death.
Super funds often provide for a lump
sum to be paid to you if you cannot keep
working because of your illness. This
lump sum benefit is often provided as
an ‘extra’ on top of your superannuation
contributions. Some funds provide a
further benefit of a disability pension
paid for two years or more.
Sometimes a statement will say “nil
cover” but you might still have had
cover when you stopped work. If you
are not sure whether you are entitled to
any disability benefits, or if you cannot
find any of your statements, you should
ask your employer, your superannuation
fund or someone who has expertise in
this area.
Choice of Fund
Superannuation
contributions not paid?
Usually your employer selects the
employment super fund, although
some employers will offer you a choice
including an industry fund.
Since 1 July 2005, many employees
are able to choose which super fund their
compulsory contributions are paid into. However, many government employees
and those covered by defined benefit
funds or awards will have a limited
choice or no choice at all.
If you have a choice of super funds,
it’s important to check the disability and
death insurance cover when deciding
which fund to join.
Check your super
If you are employed or have been
employed, check the benefits statements
which are sent out by your super fund
every year. Look for your account
balance, the contributions paid into the
fund in the last year, and your disability
and death benefits.
To find out what old super funds you
might have, check the Lost Members
Register at the Australian Taxation
Office (visit their Super Seeker website
or ring the Infoline on 13 10 20)
If you don’t think you’ve got disability
and death cover, always double check.
It’s very important to check that your
employer is paying super contributions.
Your employer has to give you a
quarterly statement setting out all
superannuation contributions.
If your employer goes out of business,
your super might never be collected. You
might also lose valuable disability and
death cover. If the contributions aren’t
being paid, get help immediately from
the ATO, a lawyer who specializes in
this area, or your union.
on the APRA website. You will have
to show APRA you can’t pay for the
expenses. Applications under (e) above
can be made to the super fund and you
will need two medical certificates.
Applications under (g) above can be
made to the super fund and you will
need proof that you were a temporary
resident and have left Australia.
Note: You might have a separate
claim for super disability benefits as well
as your contributions so get advice from
an expert before applying for your super.
When can I get my
superannuation?
Superannuation Disability
Benefits
Check Your Super Regularly
If your employer doesn’t pay super
contributions into a Fund for you, you
can take action.
The Australian Taxation Office (ATO)
is responsible for collecting unpaid
compulsory super. If you think your
employer hasn’t paid any or enough
super, you should notify the ATO. There
is a form to fill in which you can get
from the ATO website (www.ato.gov.au/
super) or by ringing 131 020.
The ATO will record your notification
and should try to collect the super and
pay it into a super fund you nominate.
It can take many months to collect the
money and there is no guarantee the
ATO will do so.
It’s important to chase up the ATO but
they might not tell you much because of
the Privacy Act.
Suing your employer
If you are covered by award super or
if your work agreement includes super,
you may be able to sue your employer
to collect the contributions and any
insurance benefits you have lost.
It’s doubtful the ATO will try to
collect any insurance benefits. Your
super fund can also take action to
recover unpaid contributions.
Your personal contributions paid up to
July 1999 can be paid to you when you
leave a super fund. However, your postJune 1999 contributions and employer
contributions must usually stay in a fund
until you reach retirement after age 55
(or up to age 60). This is called your
“preserved super”.
Early access
You can get early access to your
preserved super in some circumstances:
(a) you have been on Centrelink
payments for at least 6 months and can’t
pay your living expenses (you can get up
to $10,000.00 per annum);
(b) you’re over the retirement age
(55-60), have been on Centrelink
payments for 9 months and aren’t
working (you can get all your super);
(c) you need money to pay for
palliative care, funeral expenses,
modifications to your home or car, or
medical and transport expenses for
treatment outside the public health
system for you or a dependent;
(d) for loan repayments to prevent
the sale of your home (up to 3 months
repayments plus 12 months interest
every 12 months);
(e) you are permanently incapacitated
for work (you can get all your super);
(f) the preserved amount is up to
$200.00;
(g) you are a temporary resident and
permanently leave Australia (you can get
all your super).
Applications under (a) and (b) above
are made to your super fund and you
will need a letter from Centrelink (called
a “Q230”). Applications under (c) and
(d) above must be made to Australian
Prudential Regulatory Authority
(APRA). Application forms are available
Most super policies include disability
benefits - but not all. Super disability
benefits are Total and Permanent
Disability (TPD) lump sums or disability
pensions or both. They are usually
insurance benefits which “top up” the
contributions in your fund if you have to
stop work.
To get a TPD lump sum, you have
to show you can’t ever go back to your
usual job or any other suitable work
that fits your education, training or
experience. You don’t have to be unfit
for any work at all. For example, if you
have only ever done manual work and
can’t do that type of work now, it won’t
matter if the doctors say you could do
office work.
If you lose the use of your arms, legs
or eyes, you might qualify for a TPD
benefit even if you can still work.
There is usually a 6-month qualifying
period, but this can be reduced in some
cases.
Many people with Disability or
Disability Support Pensions will
qualify for a TPD benefit. If you can’t
do your usual job because of disability
or illness, you may qualify for a total
and temporary disability benefit (TTD).
Some funds have weekly or monthly
payments if you can’t do your usual
job (TTD payments). The payments can
be up to 75% of your wage and might
be paid for up to 2 years – or perhaps
even up to age 65. There is usually a
qualifying period of 1, 3 or 6 months.
Payments are usually offset against
workers’ compensation and sometimes
transport accident and Centrelink
payments. Temporary payments might
stop if your employment is terminated or
if you are paid a TPD benefit.
Most employment super funds provide
disability cover without any health
questions – up to certain limits. This
means that if you already had disability
or illness before you joined the fund,
you will still be covered for disability
benefits – including if you stop work
because of a pre-existing injury or
illness.
Making Super Disability
claims
Super disability claims should be
made as soon as possible. However,
claims can often be made years after
stopping work. It doesn’t usually matter
if you’ve already been paid out your
super contributions. Disability claims
can also be made by the estate of a
person after they die.
How to Claim
There will be claim forms to fill in
and medical reports and other papers
to lodge. You might be asked to sign
medical, workers’ compensation and tax
authorities and to go to a few medical
and rehabilitation examinations. It’s very
important to give the right information
and medical reports and to make
submissions to help your claim.
TPD claims usually take
approximately 12 months and TTD
claims approximately 2-4 months.
However, both can be longer.
If your claim is rejected you can ask
the super fund to change the decision.
They have 90 days to make a new
decision. If your claim is still not
successful, you can appeal to the court
or to the Superannuation Complaints
Tribunal (SCT). The SCT is an
alternative to the courts. It’s quicker
and cheaper than most courts and cases
are decided by written submissions and
replies without formal hearings.
There are limits on the types of
complaints the SCT can deal with so
it’s important to get update reports and
make detailed submissions to support an
SCT appeal.
Many appeals and complaints win
or are settled. There are time limits for
appeals to the courts and the SCT.
Note: Disability claims can be
complicated and take a long time but
it’s very important that you at least find
out about your rights. Get help from an
experienced lawyer before making a
claim or appeal.
19
Can I get new Insurance or
Superannuation?
Superannuation / Insurance
and Centrelink
Super funds have death payments
which are usually contributions plus any
insurance benefits paid if a person dies
when still in a fund or up to 6 months
after leaving. Some government super
funds pay lump sums or pensions to
surviving partners or children.
If you already have chronic illness, it
can be difficult to get disability or death
insurance cover. If you try to take out
your own insurance or super policy
you will usually have to fill in a health
questionnaire and if you know you have
a chronic illness, you must disclose this
to the insurer and they might refuse to
cover you.
If you knew you had chronic illness
when you joined but didn’t tell the
insurer, they might refuse to pay you.
However, it might be possible to get
disability and death cover by joining a
“group” super or insurance scheme. For
example, with your employment super,
employer income protection insurance,
union or credit union. You might be
offered automatic cover up to a certain
limit without any health questions.
With some schemes you are covered
for pre-existing disabilities if you
haven’t had active medical treatment for
say 6 months.
If you are thinking of leaving work,
your employment super might offer
to continue your total and permanent
disability or total and temporary
disability insurance even if you have a
disability.
A super or insurance benefit might
affect your Centrelink entitlements
depending on whether the benefit is paid
as a lump sum or a pension.
A super lump sum will count towards
your Centrelink Assets Test when you
receive a pay-out. However, if you keep
the money in a super fund it won’t count
towards your assets until retirement age.
Super lump sum pay-outs are not
treated as income.
Super pensions are usually treated as
income and may reduce your Centrelink
payments.
Super pensions paid out as lump sums
may count under the Assets Test and not
as income.
Insurance lump sums for disability
or death count towards your Assets
Test when paid to you. However, some
insurance lump sums with investment
components are deemed to be income
when received and may reduce your
Centrelink payments.
Income protection payments are
usually treated as income and may
reduce your Centrelink payments.
Income protection payments paid
out as lump sums may count under the
Assets Test and not as income.
Note: Before you get a super or
insurance payout, you should speak to
a Centrelink officer and also get advice
about how the payout might affect your
Centrelink benefits. There can also be
tax implications of a super or insurance
payout. You should check with your
financial advisor.
Who can claim?
A death benefit is paid to the husband/
wife, de facto partner, children or
financial dependants of a fund member.
If there are no partners or dependants,
the benefit is usually paid to the
deceased’s estate.
A death benefit may also be paid to
anyone who relied on the deceased
for money or was paid money by the
deceased even in a small way may claim,
e.g., if the deceased paid rent or some
money for food or bills.
When you join a fund, you are asked
to name someone you would like to get
the death benefit. However, the fund
doesn’t usually have to follow your
nomination– although a few funds do
have binding death benefit nominations.
How to claim
Write to the trustees of the super
fund to claim and tell them your
relationship to the deceased. You can
ask who is nominated and if anyone else
has claimed. The fund might ask you
to send in papers such as a Statutory
Declaration, a copy of a will, marriage
certificate, property title, bank accounts,
expense receipts, etc.
It’s important to highlight how you
were financially dependent on the
deceased.
The trustees of the fund decide who
gets the benefits, but if you aren’t happy,
you can ask them to change the decision. If you are still not satisfied, you can
appeal the trustees’ decision to the
Superannuation Complaints Tribunal or
to the courts. Many appeals win or are
settled. Again, get advice and help with
death benefit claims.
Note: Strict time limits can apply to
super death complaints with the Trustee
and with SCT death complaints– usually
28 days. Some super death benefit claims
are complicated and stressful at a very
sensitive time. Get advice and help with
death benefit claims.
20
How To Find Out
If you are starting a new job, check
what insurance cover is offered by the
super funds you can join.
If you are considering leaving work,
check whether your employment super
offers an insurance continuation option
before you leave.
If you want to take out private
insurance, do it through an insurance
broker – don’t apply direct to insurance
companies.
If you are refused insurance cover
because of your chronic illness, it
might be unlawful discrimination.
Discrimination complaints can be
made to the Human Rights and Equal
Opportunity Commission or to an
industry complaints scheme.
Note: It’s very important to know your
rights before you leave work, before you
start a new job or before you sign up for
super or insurance.
The above information was
prepared by John Berrill from
Maurice Blackburn Cashman for
the Chronic Illness Alliance. For
further information about your legal
rights on superannuation, insurance,
guardianship, powers of attorney,
wills and centrelink payments go to
www.chronicillness.org.au/
workwelfarewills/index.htm
The Epilepsy Report kindly thanks
the Chronic Illness Alliance for
permission to reprint this information.
IBE approved for Special
Consultative Status at
the United Nations!
Image: courtesy UN Photo Library
Superannuation Death
Benefits
Susanne Lund, IBE President
speaks by phone with Dr
Carlos Acevedo, Editor, IBE
News
T
oday marks a special occasion in
IBE’s history, as we are formally
recognized within the United
Nations, says Susanne Lund, President
of IBE, speaking on 18th May. I am very
happy today as the process has been
long, due to the need to meet specific
criteria in order to be accepted as an
NGO (Non Governmental Organization)
in the UN Economic & Social Council
(ECOSOC). The IBE office and the
members of the Management Group
contributed a lot to make this happen
and I am very grateful for their support.
What is Consultative Status?
It could be described as a mutually
beneficial working relationship with the
United Nations, enabling us to contribute
to the programs and goals of the United
Nations by serving as experts, advisers
and consultants to governments and to
the Secretariat. From time to time there
may be the opportunity to participate
on an advocacy group in implementing
plans of action, programmes and
declarations, adopted by the United
Nations.
In addition some of the approved
NGO's can also propose new items
on the agenda for consideration by
ECOSOC and be invited to attend
international conferences and special
sessions called by the UN.
IBE collaborates with the WHO
which is part of the UN. What’s the
difference?
Yes, IBE is still a vital member in the
valuable partnership of the WHO and
ILAE in the Global Campaign Against
Epilepsy aiming to highlight difficulties
and possible solutions to improving
life quality for people with epilepsy
worldwide. The approval of IBE in
the UN differs significantly with IBE
now being recognized as an NGO with
special consultative status on issues that
would be included in the activities of
ECOSOC.
You initiated this issue when you
became the President of IBE. Why?
When IBE applied for consultative
status work was already underway
within an Ad Hoc Committee on a
Convention to protect the rights of the
world’s estimated 650 million people
with disabilities. The NGOs had an
important role to play in this process
and as you may know the Convention
was adopted in August 2006 after five
years of negotiations. The Convention
specifically prohibits discrimination
against those with disabilities in all areas
of life, including civil rights, access to
justice, the right to education and health
services and access to transportation.
Already by 30th March of this year
more than 80 states had signed the
Convention.
With consultative status IBE could
have played an important role as an
NGO in influencing this work since
we are aware that many people with
epilepsy face difficulties with legislation
and employment rights, etc. However,
our role at this moment is to support and
encourage signing and ratification of the
Convention.
Why is the approval of IBE having
consultative status important for people
with epilepsy?
I believe that every global democratic
organization realizes that the huge
amount of knowledge and experience
gathered in the organization will help
to reinforce and strengthen the United
Nations. We have something to offer
to the world community. We use the,
sometimes, hard earned life experiences
of people with epilepsy to influence
national agendas. The 50 million people
living with epilepsy world wide should
have a voice in a formally approved
global organization such as the United
Nations. It would also be a shame for
IBE not to be involved at that level.
Another important aspect of this is
that we make epilepsy visible in the
United Nations! When we address
epilepsy within the United Nations we
will create some impact. I see all this in
a long-term view as a gardener sewing
seeds, adding some fertilizer and water,
tending them and seeing them slowly
grow until eventually they are ready to
harvest.
In this way we can make an even
bigger contribution to improving the
quality of life for those people with
epilepsy worldwide, Mrs Lund ends.
About ECOSOC
ECOSOC serves as the central forum
for discussing international economic
and social issues, and for formulating
policy recommendations addressed to
Member States and the United Nations
system.
It is responsible for promoting higher
standards of living, full employment,
and economic and social progress;
identifying solutions to international
economic, social and health problems;
facilitating international cultural
and educational cooperation; and
encouraging universal respect for human
rights and fundamental freedoms. It has
the power to make or initiate studies and
reports on these issues.
It also has the power to assist in the
organization of major international
conferences in the economic and social
and related fields and to facilitate
a coordinated follow-up to these
conferences. With its broad mandate
the Council's purview extends to over
70 per cent of the human and financial
21
resources of the entire UN system.
ECOSOC was established under the
United Nations Charter as the principal
organ to coordinate economic, social,
and related work of the 14 UN
specialized agencies, 10 functional
commissions and five regional
commissions.
In the Millennium Declaration, Heads
of State and Government decided to
further strengthen ECOSOC, building
on its recent achievements, to help it
fulfil the role ascribed to it in the UN
Charter. In carrying out its mandate,
ECOSOC consults with academics,
business sector representatives and more
than 2,100 registered NGOs.
The Council holds a four-week
substantive session each July, which
alternates between New York and
Geneva, organized under the Highlevel Segment, Coordination Segment,
Operational Activities Segment,
Humanitarian Affairs Segment and
the General Segment. At High-level
Segment national cabinet ministers and
chiefs of international agencies and other
high officials discuss in detail a selected
theme of global significance.
A Ministerial declaration is generally
adopted on the theme of the High-level
Segment, which will provide policy
guidance and recommendations for
action.
Consultative relationships may be
established with international,
Research shows how genetic mutation
causes epilepsy in infants
N
ew research from the Howard
Florey Institute has shown why
mutation in a single gene can
cause epilepsy in infants.
Infants are more susceptible to
seizures because their brains are
developing at a rapid rate, making their
brain cells ‘excitable’. Their neurons are
growing and making new connections
with other nerve cells, which can disrupt
normal brain activity and results in
epilepsy.
Infants have protective mechanisms in
their brains to control this excitability,
but now the Florey scientists have
uncovered that a single gene mutation
prevents a specific ion channel from
functioning correctly, thus causing
excitability which results in epilepsy.
Dr Steven Petrou and his team knew
the genetic mutation existed, but did not
know its impact on brain function or
that it may control excitability in infants’
brains.
“This discovery is helping us to
understand how and why this form of
epilepsy, known as benign familial
neonatal-infantile seizures, appears in
these infants,” Dr Petrou said.
“Interestingly, we also found that the
ion channel which carries the mutation
is itself naturally protective as it limits
excitability in the infant brain by waiting
to fully ‘switch on’ only in the adult
brain.
“The mutation accelerates this
normally delayed development change,
leaving the susceptible infant brain with
an overly excitable channel and epilepsy.
“If this switch to a more excitable
state occurs too early during brain
development, it is possible that epilepsy
and other neurological disorders develop.
“This highlights the complexity of
the human brain and how disorders can
develop if one single mechanism goes
awry,” he said.
This research was recently published
in Molecular and Cellular Neuroscience.
According to Dr Petrou, potential new
avenues of research may emerge from
this study.
Epilepsy affects 3% of the Australian
population and better treatments are
urgently needed as many existing
therapies have serious side-effects for
patients. In 30% of cases, the current
drug options available provide limited
seizure relief.
There are more than 200 types of
epilepsy, which can either be inherited or
result from a range of causes including,
head trauma, vascular disease or brain
tumours.
The Florey is Australia’s leading brain
research institute, located in Melbourne,
Australia. Since its establishment in
1971, the Florey has grown to become
one of Australia’s finest medical research
institutes. For more information about
research at the Florey go to www.florey.
edu.au
22
In this final article in his series
on raising a child with epilepsy,
Robert Mittan discusses
regional, sub regional and national
non-governmental, non-profit public
or voluntary organizations. An NGO
affiliated to an international organization
already in status may be admitted
provided that they can demonstrate that
their programme of work is of direct
relevance to the aims and
purpose of the United Nations.
To be eligible for consultative status,
an NGO must have an established
headquarters, a democratically
adopted constitution, authority to
speak for its members, a representative
structure, appropriate mechanisms
of accountability and democratic and
transparent decision-making processes.
How to raise a
child with epilepsy
Part 3: Coping with guilt
MAILBOX
We have a 24 year old intellectually disabled
son who has been taking Epilim to control his
seizures, which he has suffered from since birth.
Since starting on Epilim a month or so after he
was born he has been free of seizures. He has
always been a gentle natured person and has
never showed any signs of aggression.
Early 2006 our chemist suggested that
we may like to change to a generic brand of
medication. We sought and received assurances
that the generic brand was identical to Epilim.
We commenced giving our son the generic
medication. Over the ensuring months we noticed
some changes to our sons behaviour but nothing
too significant. One thing that we did notice was
that he started to talk more, louder and faster
than what he normally would.
A few months later our sons behaviour
worsened and he started showing signs of
aggression, mainly directed at his father. We
have been seeing our GP about these problems
and this soon lead to a specialist.
The following months our son became more
aggressive and he was getting to the point where
he was becoming violent. It wasn’t happening all
of the time but it was becoming more frequent, he
would just completely loose control.
During a conversation with a friend I
remembered a conversation some time ago about
generic medications. My friends doctor and
chemist advised her not to change to the generic
brands for her son who is also disabled. I rang
our specialists rooms about changing back to
Epilim and the message I received was “Give it
a try”.
We started our son back on Epilim and the
following night we noticed a slight change in him,
during the week we noticed further improvement,
by the end of the week we had our boy back.
Everything has now returned to normal.
We hope that our experiences may be of help
to other families who may find themselves in the
same situation.
Name and address supplied
Editor’s Note
For further information on medications please
contact Epilepsy Australia on 1300 852 853.
Robert J Mittan
Seizures and
Epilepsy Program (S.E.E.)
www.theseeprogram.com
For 22 years, Robert J Mittan, PhD, has
been helping people with epilepsy and
their families. A clinical psychologist, he is
recognized as one of the foremost epilepsy
educators in the world. His work helping
others has earned many awards and his
research on epilepsy has resulted in new
and important discoveries.
The S.E.E. program is designed to give
people with epilepsy, parents of children
with epilepsy and family members the
information and skills needed to get the
best chance of becoming seizure free –
without letting treatment become part of the
problem.
Dr Mittan has presented this program to
over 30,000 people with epilepsy and their
families in Australia, Canada, New Zealand
and the USA.
This article was published in Exceptional
Parent magazine, Volume 35, Issue 12,
Dec. 2005 www.eparent.com and is
reprinted with permission.
This is the final of three articles forming
S.E.E. Program Parents’ Manual. For more
articles on epilepsy you can visit the S.E.E.
library at www.theseeprogram.com
A
pproximately 5% of children with
epilepsy have seizures so frequent
or prolonged that the epilepsy
is clearly to blame for the child’s social
disability. In the first article of this series,
“Coping with Fear,” an alien from outer
space observed children with epilepsy. It
noticed the vast majority of children went
days and even weeks without seizures.
Yet research finds most children with
epilepsy suffer social impairment out of
proportion to the physical and medical
challenges they face. How can this be? It
appears that the disability of epilepsy is
not so much a physical disability as it is a
learned disability.
In the first article we discovered that
for most families, epilepsy is not so much
a physical disorder as it is a disorder
of anticipation. The unrelenting worry
the child might be harmed by seizures
lead to parent coping behaviors that
(unintentionally) taught the child fear and
prevented him from gaining a sense of
selfworth, competence, independence,
and social skills. The result of common
childrearing practices was to teach
disability while doing little to contribute
to safety. The article showed how
parenting decisions are often determined
by strong forces outside of conscious
awareness. However, once we were aware
of the how the disorder of anticipation
unconsciously influences childrearing
practices, it became easy to make
conscious decisions to help our child
develop the skills she needs to succeed
in life.
The power our culture has over
parents through its unspoken beliefs
about epilepsy was examined in the
second article of the series, “Coping
with Stigma.” We discovered cultural
stigmas used stealth to take root in our
minds and hearts without our consent
or knowledge. Like fear, these stigmas
corrupted childrearing practices in
hidden but powerful ways. These
practices unintentionally taught stigma
and disability – not just to our child with
epilepsy, but also to our other children, to
ourselves, and sometimes to those around
us. Surprisingly, it turned out to be the
family, not society, that taught stigma
and the learned disability of epilepsy.
However, when the cultural stigmas
hidden in us were exposed, we learned
how easy it was to stop teaching stigma
and disability.
In this final article on “Coping with
Guilt,” we are going to discover how
our culture attacks the emotional
well being of parents of children with
epilepsy. Guilt, like fear and stigma,
unconsciously influences childrearing
decisions for the worse. However with
guilt most of the damage done is to the
parents. Parental guilt occurs with any
child with an illness or disability, so
much in this article applies to anyone
with a disabled child. The source of guilt
comes from what I call the disorder of
hyper-responsibility. As you might guess
from the previous articles, the disorder of
hyper-responsibility has its roots in the
beliefs our society teaches us without our
awareness or consent.
23
Where Guilt Comes From
Cultural worship of physical
perfection: Our culture is obsessed with
physical perfection. You see it every day
on television, in newspaper and magazine
ads, and in the booming cosmetic and
weight loss industries. This obsession
spawns anorexia, steroid abuse, and
$100 blue jeans. If you look
carefully, there is not a similar
obsession for perfection in
our intellectual and emotional
abilities. In fact, we enjoy
the mental and emotional
shortcomings of our favorite,
beautiful or handsome actors
and entertainers through gossip
and the tabloids. Physical
perfection is everything. Our
bodies must be perfect. And so
must our children. This intense cultural
value of physical perfection is the first of
two cultural values leading to parental
guilt.
Parents are 100% responsible:
Our culture harbors a profound belief
of what a parent is. It is belief we are
all very familiar with, even if we have
never put it into words. Our culture
believes the parent is completely, totally,
absolutely, and thoroughly responsible
for everything about their child. This
responsibility begins with creating the
child, it includes every aspect of the
child’s physical makeup, and it includes
every event that occurs in that child’s life
throughout childhood – and beyond!
Like other cultural values, we would
be hard pressed to be able to say exactly
when, where, or how we learned it. Also,
like many cultural values, we are seldom
aware of how deeply rooted it is in our
minds and hearts. We are even less aware
of how much it influences our feelings
and behavior.
Parents’ total responsibility for their
children is a useful cultural value. It
bonds parent to the child throughout the
child’s twenty-year development. It is
society’s way to insure its children are
adequately cared for. For the most part,
we like this value, even though we are
only dimly aware of its full implications.
Think of how often you or another parent
has taken a great deal of pride and credit
for a child’s accomplishments – good
grades, athletic prowess, community
service, etc. And because others share
this cultural value, they give us credit for
our child’s accomplishment, even though
our child did the work. Society sees us as
ultimately “responsible” for our child’s
good work.
Like many things our culture plants
deep into our minds, this one is a twoedged sword. We get credit if the child
does well. But we also get the blame if
our child does poorly. How often have
How many relatives, neighbors, or
friends have asked you “Can’t you do
something (more) to control your child’s
seizures?” The people around you,
specially those close by, seem to treat
each seizure as a personal failure on your
part. After all, “You are the parent, you
are responsible!”
Before you are tempted
to protest such unfair
treatment by your relatives
and friends, look inside
yourself. You will find you
have already held yourself
completely to blame.
Both your self-blame and
their (hurtful) question
are products of the same
deep-rooted cultural
belief. Their question
came from the same cultural belief in
“absolute parent responsibility” that lead
to your own self-condemnation. This
simple remark from a relative, friend, or
acquaintance stabs right to the core of
your adequacy as a parent, yet none of
them would have any idea of how deeply
they were wounding you.
Understanding this still does not quell
the sting. Because our culture says you
are entirely responsible, and because this
belief is as deeply rooted in others as
it is in you, their comments about your
child’s seizures throws in your face the
fact that you are “failing” as a parent. It
stings so badly because you already feel
you are failing as a parent. Like every
loving parent, you have been blaming
yourself from the first day. And since
that first day, every single seizure causes
your stomach to twist and your sense of
adequacy to decline.
Our cultural training and the people
around us who unconsciously enforce it
have created what I call the disorder of
hyper-responsibility. The disorder of
hyper-responsibility occurs when your
feelings, behavior, and self-perception
are controlled by the cultural belief you
are absolutely and completely responsible
for everything about your child. In the
disorder of hyper-responsibility, you are
responsible for the child’s epilepsy. In the
disorder of hyper-responsibility, you are
responsible for each and every seizure.
When this teaching is put into words,
it sounds utterly ridiculous – and it is.
You are no more responsible for the
electrical and chemical behavior of
specific cells in your child’s brain from
“Our culture not only teaches us
we are responsible for everything
our child is, it teaches we are
also responsible for everything
that happens to our child.”
24
you heard poor discipline at school is a
“parent problem” on the news or in pop
psychology?
The unspoken, yet absolute belief that
we parents are completely responsible for
everything about our children is deeply
rooted in our minds and hearts. This
means at the very core, society holds us
responsible for our child’s epilepsy – and,
consciously or not, we hold ourselves
responsible, too.
If you don’t believe me, let me ask
how many nights have you laid awake
thinking about what you did wrong
during your pregnancy that caused your
child’s epilepsy? How often have you
wondered if past drinking, drug use, or
illness lead to your child’s seizures? How
many times have you gone over and over
in your mind the things you should have
done to prevent an accident, illness, or
birth defect that lead to seizures?” The
belief in our personal responsibility for
our child’s epilepsy is deeply rooted in us
by our cultural training. Emotionally, this
belief about our responsibility is absolute.
There is more. Our culture not only
teaches us we are responsible for
everything our child is, it teaches we
are also responsible for everything that
happens to our child. That means we
aren’t just responsible for our child’s
epilepsy; we are also responsible for
every single seizure.
Don’t believe me? How much time have
you spent going over the events before
a seizure, searching for something you
should have done to stop it? And you are
not the only one expecting you to stop
seizures.
moment to moment than your pet cat is.
Unfortunately, our culture does not see it
that way. The belief the parent is entirely
responsible is real and active in us, and in
everyone we know.
This process is not conscious. Usually
only the resulting distress is evident to
your conscious mind, and not even that
if you are fighting hard to keep your
feelings under control. Without your
consent or awareness, the disorder of
hyper-responsibility has taken control
of the way you see yourself and the way
others see you. The epilepsy is your fault.
Every seizure is your fault.
Guilt
Two other cultural beliefs come
into play with the disorder of hyperresponsibility. The first is that you must
be punished for your parental failure to
bear and maintain a physically healthy
child. The second is that you must make
restitution for the damage you have
caused your child. Like other cultural
beliefs, these are simple, black-and-white
rules that have no regard for personal
circumstances. When operating in their
usual manner, which is beneath conscious
awareness, they can be brutal to the
emotional well being of each parent.
Epilepsy puts the parents in emotional
jeopardy from the outset. Father and
mother have both “failed” to have a
physically perfect child; something our
culture demands. Guilt is how culture
has taught us to punish ourselves for
this failure. Guilt begins with the first
seizure. Since having an “epileptic”
child is a huge grievance in our cultural
beliefs, guilt must be imposed in great
quantity. Self-esteem must pay. You
are not allowed to feel like you are an
outstanding parent when you have an
“epileptic” kid. Husband and wife,
originally excited about having a child,
are suddenly confronted with their
failure to be good biological stock. Each
parent’s self-esteem is damaged – as is
their image of themselves as a couple.
In the disorder of hyper-responsibility,
every seizure represents another failure
of the parents to control their child’s
seizures. Every seizure is (and must be)
punished by more guilt. Self-esteem
continues to suffer with each seizure.
Cultural learning says you are not
allowed to feel good about yourself
when you continue to “fail” your child
repeatedly. As seizures recur, guilt
builds and self-esteem erodes further.
The emotional trauma to parents can be
overwhelming. Some parents fail under
the stress and leave the family.
Some readers might wonder how
parents make it through this mess.
Almost all parents of children with
epilepsy know the answer. There is
something that fear, stigma, guilt, and
culture cannot overcome – it is the sheer
love parents have for their child. I have
seen single parents and couples endure
this and more out of love. Many have
limped through. Only a few get through
with flying colors, though you should
remember few parents of “normal” kids
get through with flying colors either.
Restitution
Our culture teaches us we must make
up for any harm we have caused to
another person. As loving parents, we
feel heartbroken for our child. Feelings
of guilt quietly fill us as we watch
what he has to go through to endure
each seizure, each stigma, and the side
effects of treatment. The disorder of
hyper-responsibility has left us feeling
deep inside this is our fault. We feel a
strong need to make restitution to our
child for what our disorder of hyperresponsibility claims we have done to
her. Parents feel compelled by their guilt
to somehow make it up to the child.
But can anyone really “make up” for a
lifetime of epilepsy?
Yet, feeling like we are failing our
child is agonizing. Most parents would do
anything they could to avoid letting their
child down. The result is a strong urge to
“make up” for the epilepsy by pampering
and indulging the child. The child gets
more attention than his brothers and
sisters. More praise is given for his
accomplishments. The rules are “bent”
for him more than others. Discipline
is less. Fewer chores and demands for
performance are placed upon the child.
She may get a television in her bedroom,
or video games, or extra clothes or
jewelry to help her “feel better.” These
attempts to “make up” for the seizures
are also unconsciously meant to help the
parent to feel less guilty. Parents acting
on the delusion they can “make up” for
the epilepsy and for each seizure is how
our cultural beliefs and the disorder of
hyper responsibility corrupts parents’
childrearing decisions in a way that
ends up teaching the child disability, not
competence.
So what is the developmental result
of this extra attention? In the parents’
determination to “make up” for epilepsy,
the child is unintentionally taught that
she is due attention and gifts beyond what
others get. The child with epilepsy is
taught that his or her role in the family is
that of prince or princess.
What happens when a child grows
up believing they are entitled to extra
consideration? What happens when they
grow up and leave the family to make
their way in the world? At the most,
society will treat him as it treats everyone
else – no special favors. As a person
with a disability, society may even treat
him with less kindness and rewards than
others. A childhood of indulgence leaves
him totally unprepared for this new
reality, and trouble rapidly follows.
The family teaches the child his
social role and the role of others.
Overindulgence teaches him his social
role is to take and that others’ roles are to
give to him. When society does not meet
the expectations he was taught in the
family, he will be angry and blame others
for not treating him “fairly.” Other people
will neither understand nor respond to his
expectations for special treatment. They
will find his resulting anger unreasonable
and they will have little to do with him.
Overindulgence teaches the child a
disabling way of interacting with others.
The disability of epilepsy is a learned
disability.
Redemption
There is a path to redemption in
the disorder of hyper-responsibility:
cure the epilepsy. How often have you
dreamed of that? Probably with every
seizure, every visit to the doctor’s
office, every side effect from treatment,
and many nights when you are trying
to fall asleep. Charitable foundations
for epilepsy (and every other medical
disorder) intentionally or accidentally tap
into this deep-rooted emotional obsession
for a “cure” to encourage generous
donations. Look at the next charitable
solicitation you receive. I’ll bet the farm
that you won’t see them say “give to
make things a bit better for people with
epilepsy now;” they will say “give so that
we may find a cure.” Only sometimes do
they say “in the future;” most seem to
leave that part out.
We desperately want our child to be
25
“normal” and not to have to suffer the
problems of epilepsy. We want our child
to be well. We want our child to be happy
and to succeed. We want a cure for it all.
The desire to cure the epilepsy also
means much for us. We are tired of the
struggle and want it to end. We want the
burden of constant, exhausting worry
(disorder of anticipation) to stop. We
want to stop that feeling that somehow
we were not good enough parents. We
want the guilt (disorder of hyperresponsibility) to end. Curing our
child’s epilepsy ends our own
distress as well. Not only would a
cure would end worry and guilt, a
cure would make us feel great as
parents. We could show others we
had the extraordinary talent as a
parent to overcome epilepsy and
heal our child into a physically
perfect youngster. How often have
you dreamed of being that superparent?
The fantasy of what a cure would mean
to our child and to us makes the need to
achieve it intense. Hours and hours are
spent thinking about a cure and how it
might be achieved. High expectations
are placed on the doctor to succeed in
treatment. We are dissatisfied with slow
results. We may rush the child back to
the doctor for every small increase in
seizures. We become impatient and even
angry when calls to the doctor are not
returned right away. The intensity of our
own need for a cure gets acted out in
our relations with the doctor. We expect
his or her powers to be as great as our
expectations. Friction occurs when the
two don’t meet. This is how the disorder
of hyper-responsibility leaks into
medical care to cause problems.
someone who mothered an “epileptic”
child? How could she love someone who
can’t afford to send the child to the best
doctors? As our self-esteem suffers, we
become defensive, trying to preserve
every shred of self-worth we can. One
sign of this is the “blame game.”
The blame game starts early with the
attempt to explain how the child got
epilepsy. Blame begins inside ourselves.
The classic example is the mother who
parakeet.
The disorder of hyper-responsibility
often creates another marital problem.
The amount of guilt a parent feels and
the need to make it up to the child can
become intense. In response, one parent,
usually the mother, devotes herself to
the afflicted child. Throughout the day
her energy, thought, and emotion is
dedicated to caring for the child. This
devotion, added to worry for the child’s
safety (disorder of anticipation),
sometimes drives the mother to
sleep with the child instead of
her husband.
This single-minded devotion
results in the neglect of the
spouse and other family
members. The husband can feel
shut out and resentful. Siblings
also feel short changed and
often resort to acting out in
order to get the mother’s attention. In the
meantime, the mother feels emotionally
exhausted with the constant vigil and
caring for the child with epilepsy. She
doesn’t understand why her husband is
not supporting her and replenishing her
emotionally. She doesn’t understand
why her other children seem bent upon
making her life harder when she already
has enough problems.
All of these difficulties stem from
the disorder of hyper-responsibility. It
comes from the underlying belief that
the parent is responsible and the parent
has to make it up to the child. You are
not responsible. “Making it up” to the
child is only a fantasy. No matter how
much you indulge the child, he will
still have epilepsy. And the more you
indulge the child, the more disabled she
becomes. And the rest of the family is
sacrificed. The battle is really in your
own head. To raise a well adjusted child
you have to give up the disorder of
hyper-responsibility, (and the disorder of
anticipation, and your cultural stigmas.)
It is essential for you as parent to
restore the normal emotional balance in
your family. Each member, including
you, should get the amount of attention,
affection, and expectations he or she is
due. Life is uncertain. Your “normal”
child or spouse could be the one run
over by a truck tomorrow. Enjoy life
and companionship with each and every
family member for today. If it is a seizure
free day, so much the better. Don’t spend
any part of your day worrying about the
“There is something that
fear, stigma, guilt, and
culture cannot overcome –
it is the sheer love parents
have for their child.”
Guilt and the Marriage
can make parents feel like failures. The
“failure” of having a child with epilepsy
and the ongoing “failure” to control
seizures wears away at the parents’
self-esteem with each seizure. After
the initial blow to self-esteem by the
diagnosis, further losses may be slow
and imperceptible, but the damage can
stubbornly worsen. This is a hazardous
development for the marital relationship.
When self-esteem wears down, it
becomes difficult to feel that we are
worthwhile enough to be loved. We begin
doubting the sincerity of our spouse’s
love for us. How could he possibly love
26
goes over her entire pregnancy trying to
figure out what she did wrong to cause
the epilepsy. Both parents might go over
their past medical conditions, drug use,
prescriptions, and family history.
The blame game erupts to the surface
when spouses begin accusing the other
of being the cause. Things such as “It
must have been your side of the family,”
or “You used too many drugs in school”
or “You shouldn’t have had anything
to drink while you were pregnant,” are
attempts to assign responsibility to the
other spouse. We try to preserve our
own self-esteem by laying the blame at
someone else’s doorstep. It assigns the
disorder of hyper-responsibility to the
other spouse and saves you some guilt in
the process.
The blame game is extended to cover
responsibility for everyday seizures. The
husband asks, “Didn’t you make sure that
Alice took her medications yesterday?”
or “Why didn’t you ask the doctor to…
when you were at the appointment this
afternoon?” The wife responds, “Why
don’t you ever go to the doctor with us?”
“Why don’t you hold him during seizures
for a change?” Interaction becomes
dominated by a desire to assign and avoid
blame rather than by cooperation and
mutual support. Once the blame game
is started, it is very difficult to stop. The
marriage suffers. Remember, you and
your spouse are no more responsible for
the electrical and chemical activity of
certain cells in your child’s brain from
moment to moment than is your pet
next seizure. The time you have right
now is the only time you get to live in.
Bask in it. The past is over and the future
always runs way ahead of you.
Guilt and parenting
decisions
Guilt has a powerful effect on
childrearing decisions. Parents already
feel enough guilt for their child’s
epilepsy. Parents develop a strong feeling
for the huge extra burden epilepsy places
on their child’s life and emotions. Not
surprising, the size of the burden the
parent feels the child must carry is very
similar to the amount of guilt the parent
feels. It’s easy to give in to the feeling
that it is not fair to ask more of the child –
he already has enough to deal with. There
is a strong urge to cut the child some
slack. You feel sorry for him and for the
extra effort he has to make to accomplish
things other children take for granted.
Children pick up on these feelings
quickly. Your desire to make restitution.
Your reluctance to make demands on
behavior or place high expectations on
performance. Your willingness to cut the
child extra slack. The child figures out
that he can exploit these indulgences to
get her way.
Johnny needs to take out the garbage,
something he really doesn’t like to do.
When you ask him, he might tell you
he doesn’t feel well and thinks he might
have a seizure. The normal reaction is
to let him off the hook. This will only
encourage the “epilepsy excuse” to be
used again – and in other situations. A
better response is to tell him, “Take out
the garbage, then have a seizure or have
your seizure, then take out the garbage.
The choice is up to you.”
It is very important that early in life
the child (and you) learn epilepsy cannot
be used as a crutch. The minute the
child discovers she can use epilepsy to
get out of work, avoid expectations, or
dodge unpleasant situations or school
assignments, the child is at risk of
being disabled for life. If the “epilepsy
excuse” works, the child will use it
again and again. The more unpleasant or
threatening the task, the more epilepsy
will be used to avoid it. Repeated over
time, epilepsy changes from an excuse
to a barrier. The disability of epilepsy is
learned.
Do you think society is going to
cut your child slack for a lifetime just
because the poor thing has epilepsy?
Is an employer going to let your son
do only a part of his job year after year
just because he has seizures now and
then? Is that college going to think
epilepsy is an adequate excuse to admit
your daughter even though she never
developed the ability to get through all of
her homework?
The world doesn’t give breaks to threelegged dogs – I know because we have
one. The dog has to learn the skills it
needs to fit into the world on the world’s
terms. Have you ever watched a threelegged dog? He certainly has a handicap,
but does he seem to be bothered by it?
The dog accepts three legs as a part of
life – in fact doesn’t think of it. It is just
a natural part of him. He isn’t jealous of
four legged dogs. He doesn’t whine on
the floor and lick his stump for hours and
hours day after day. Instead, he finds a
way to play catch. He chases squirrels
like he is going to catch them every time.
He shows not the slightest decrease in
love and affection. He is happy with
himself and with his family.
If you want to see how to get past
the barrier that guilt poses to the
development of your child, think of the
three-legged dog. Just like the dog, you
and your child need to accept epilepsy as
a normal part of her life. You wouldn’t
keep reminding the dog that he has only
three legs, so don’t spend a moment
worrying about the next seizure (the
disorder of anticipation.) Focus on what
you child loves to do; chasing after a ball
on a sports field or chasing after the latest
concept in physics. Expect your child to
perform the basics to life like any other
child. Like a three-legged dog, she may
have to work harder at it than others, so
it is best to get the earliest possible start.
She won’t be jealous of children without
epilepsy unless you teach her to be.
Patience is a critical skill in
overcoming guilt. You may feel sorry for
the three-legged dog’s failing attempts to
jump onto the couch, but would he ever
learn if you lift her every time? Given
enough time, the dog will succeed. He
will get better and better at it until he
can do it every time. And in the process
he will have learned a valuable life
lesson that “determination” can result in
success. Your child will struggle and ail.
You will want so bad to excuse him or
give him a boost. But how will he learn
to meet life’s demands on life’s’ terms if
you do it for him?
Don’t let the feeling of guilt over
watching the struggle lead you into
disabling your child by doing any part
of it for her. I know this sounds hard on
the surface – leaving her to struggle, and
possibly fail time after time. But if you
give her that boost, whose feelings are
you really taking care of? – your child’s
or your own? While it seems loving to
help, it is actually a selfish act that makes
your guilt feel better. It costs your child
the opportunity to learn to persevere, to
learn to cope with failure, and eventually,
to learn to triumph on his own. It costs
your child the opportunity to succeed in
meeting life on its own terms with his
own strengths and challenges.
None of this means you cannot teach
your child. Teaching is enabling. Doing
it for her is disabling. By all means share
as much wisdom and strategy as you can,
but then stand back and let the child put
the pieces together for herself.
Guilt and healthcare
For much of the history of epilepsy,
little of real value could be done to
prevent seizures. Only very recently has
modern medicine opened the door to
practical treatments that can reduce and
even stop seizures altogether. The last
dozen years has seen the introduction
of nine new antiepileptic medications,
advancements in brain scans that seem
like science fiction, and a huge increase
in our understanding of the medical
management of epilepsy. If it was your
child’s fate to have epilepsy, out of all of
history this is the best possible time.
In these articles on “Raising a Child
with Epilepsy” we have found that
even good things can be two-edged
swords. This is true about the modern
medical treatment of epilepsy. While the
many diagnostic and treatment options
available for your child dramatically
raises the chance for seizure control,
parents find themselves in the midst of a
confusing set of medical choices – and
a complex and overburdened healthcare
delivery system that provides little
support or information to help with those
critical decisions.
Parents are responsible for their child’s
health care. That responsibility exists
in our cultural values and it exists in
the law. Parents find themselves having
to make healthcare decisions that will
affect their child’s future, and possibly
27
their child’s very survival. If the parent
chooses well and the treatment is a
success, there is much to celebrate. The
child is whole again and the parents
can take credit for outstanding talent in
childcare. They have triumphed over the
terrible condition of epilepsy.
But credit for the outcome cuts
both ways. If treatment is a failure, it
means the parent has chosen the wrong
treatment, the wrong doctor, or somehow
did not manage the child’s care
adequately. The disorder of
hyper-responsibility causes
parents to see treatment failure
as their own personal failure to
adequately care for their child.
The guilt for this comes by the
barrel.
The tremendous guilt parents
face in making healthcare
decisions isn’t even on the
radar in most medical practices. Yet,
the parent is set up for guilt with the
current practice of medicine. The high
tech, the doctor’s strange language, the
rushed review of treatment choices, and
the lack of time for questions put parents
at a huge disadvantage. In the U.S.,
healthcare cost and time pressures make
it almost impossible for the parents to
learn enough from the doctor to become
comfortable in their roles as healthcare
team members and decision makers. In
managed care countries, both time and
healthcare choices can be limited. As a
result, parents may feel frustrated and
powerless to help their child. It is not
surprising parents feel overwhelmed and
fearful about making decisions. It feels
like they are being forced to take shots
in the dark. Loving parents are terrified
of making a mistake. The disorder of
hyper-responsibility can raise parent
fears over healthcare decisions to the
point of desperation.
Guilt doesn’t stop with the decisionmaking process. Once the therapy is set,
I have found parents continually secondguess their decisions – especially if
there are problems. Parents not only feel
guilt over treatment failure, but also feel
tremendous guilt for the side effects their
child experiences from treatment. I have
known many parents with seizure free
kids who have been wracked with guilt
over the fact that the medication has left
their child less able to function. Should
they have less medication and more
seizures or the opposite? The disorder of
hyper-responsibility says the outcome of
any such decision is their fault.
What if seizures are not controlled – do
they abandon a medication that helped
some for a new medication that might not
work and may have its own side effects?
Parents can agonize for months over
these decisions. The disorder of hyperresponsibility can make it impossible for
parents to ask for a change. If the change
results in a worse outcome, the parent’s
“The tremendous guilt
parents face in making
healthcare decisions isn’t
even on the radar in most
medical practices”
28
guilt could be unbearable. I have seen
many parents frozen by this fear, unable
to make any changes in treatment.
The goal in epilepsy treatment is “no
seizures and no side effects.” It is the
doctor’s responsibility to find a treatment
that does best to meet both treatment
goals for your child. Your responsibility
is not to punish yourself and not to let
your fear prevent action. Your critical
role is to let the doctor know when there
is a problem, to describe the problem
thoroughly, and to record the exact time
and circumstances of each occurrence
of seizures or side effects in your child’s
seizure or medical diary.
also causes parents to write off one
of the most important and successful
treatments for epilepsy: surgery. The
idea of brain surgery is frightening
enough, but parents are terrified that their
decision for surgery could leave their
child disabled for a lifetime. Imagine the
guilt! But the risk of surgery is small; it
is the disorder of anticipation that makes
the surgery seem life threatening. But
what really stops parents from acting is
the guilt they would feel if any of these
terrible anticipations came true. As a
result, children are regularly left to suffer
seizure after seizure, usually until the
children are “old enough to participate”
in the decision about surgery. The irony
is by the time the child can help with the
decision, the damage to development
is already done. Then parents don’t
understand why the adolescent or adult
child remains disabled despite becoming
seizure free from the surgery (Reason
– by waiting the child has had plenty of
time to learn the disability of epilepsy.)
complicates medical care in a much
more common way. Parents, feeling
responsible and guilty for each seizure,
often become very demanding upon the
doctor for immediate success. Every
occasion where there is a small increase
in seizures brings the parents
running back to the doctor with the
demand that treatment be changed
and the seizures be controlled. The
intensity of parents’ demands on
doctors is, in my opinion, one of
the greatest reasons children with
epilepsy are so often overmedicated.
Parents insist, and back it up with
multiple calls to the office and
complaints to nursing staff and
anyone else who will listen. In an effort
to accommodate the parents, the doctor
increases the dose, or worse, adds an
additional medication to try to control
the seizures. The irony is the child is
being medicated to treat the parents’
disorder of hyper-responsibility and
their disorder of anticipation. I think
physicians have a responsibility to resist
this, even when parents up their demand
by threatening to “get a second opinion.”
Parents need to know that the natural
course of epilepsy is one of waxing
and waning of seizure frequency
in children whose seizures are not
completely controlled. It is normal
for there to be periods when seizures
increase temporarily. It is also normal
for quiet periods to occur. It will take
parental cooperation and a good bit of
experienced judgment by the doctor to
determine if a treatment change is really
in the child’s best interest. If your child is
a difficult case, get your child seen by an
epileptologist. The extra experience can
make a big difference.
The real tragedy in medical care is the
disorder of hyper-responsibility and
the disorder of anticipation convert the
parent doctor team from a cooperative
effort into an adversarial one. In the
process, the child often pays dearly, both
in seizure control and quality of life from
side effects.
A huge source of guilt in healthcare is
money. In the U.S. medical system you
can get the best care in the world for your
child – if you have enough money. Many,
if not most parents in this country have
trouble paying for healthcare. Many are in
healthcare plans that dictate who they can
see. The latest medications are extremely
expensive. Parents can suffer tremendous
guilt for not being able to afford the care
they want for their child. To these parents,
I suggest they ask their healthcare provider
or a social worker about programs that
help cover treatment and medication costs.
Look on the Internet and in the library for
such programs, too. Many drug companies
have programs that offer their medications
at reduced cost or for free. Learn about
epilepsy and its treatment. You will
discover there is a surprising amount
that can be done with limited resources.
The answer to your child’s seizures could
be that easy. In any case, don’t allow
your financial circumstances to feed the
disorder of hyper-responsibility and guilt.
You are an outstanding parent if you do all
you can with the resources you have.
What can you do to overcome the
disorder of hyper-responsibility for
healthcare for your child? Become
educated. Just 20 years ago your job was
much easier. The physician was seen
as a sort of god and whatever he or she
said was what you would do. This godlike stature relieved the parent of much
medical responsibility.
Today patients and families have been
given responsibility to question and
choose among diagnostic and treatment
approaches. As a society we wanted
this change, and it is very appropriate.
This change occurs at a time when the
complexity of medicine and the treatment
alternatives have become staggering. You
cannot read a brochure or two from your
epilepsy association and consider yourself
prepared anymore. To meet the challenge
of your responsibility in your child’s
medical care, you need to be educated.
You need to understand what epilepsy
is, what the different seizures are, how
epilepsy is diagnosed, how it is treated
with medications, what the different
medications are along with their side
effects, what are the alternative treatments
such as surgery, ketogenic diet, and the
Vagus Nerve Stimulator. You need to
know when they should be used, and you
need to know what the prognosis is for
your child (how the epilepsy will affect
your child’s future and abilities.) This is
just the short version of the list.
Because you must know about the
medical aspects of epilepsy to be a
successful parent, I have written a
series of three articles called Beating
Bad Seizures. These articles will give
you some of the key pieces of medical
information you will need to manage your
child’s healthcare. Visit the S.E.E. library
at www.theseeprogram.com
absolute darkness in this area of our
“expert” knowledge. You have persevered
alone, with unwavering love and courage,
and you have succeeded beyond all
reasonable expectations. I only hope that
these articles provide a small candle of
light to help you on your courageous way.
Guilt from the disorder of hyperresponsibility, worry from the disorder of
Guilt and these Articles
anticipation, and cultural stigmas silently
There is one last source of guilt that
conspire to control your childrearing
does not come from culture. It is the
decisions. Left hidden in the deep recesses
guilt you might feel after reading these
of your mind and heart they taught your
articles. I have laid bare the process of
child the disability of epilepsy. That is no
how children with epilepsy are taught to
longer you. You have found their hiding
be disabled. I have tried to lay it out so
places and you are tearing them out by
clearly that it nearly jumps in your face.
The damaging consequences of common their roots. You have insight beyond most
ways of coping with a child with epilepsy parents.
were exposed to a bright light. These
You know the disability of epilepsy is a
ways of coping are so universal that I
learned disability. Now you can choose not
know many apply to you. The temptation to teach disability to your child. Now you
is great for parents to feel badly about
can see how childrearing decisions affect
things they have done to their children in your child’s future. Now you have the
the past. Don’t do it to yourself. It is only understanding to grow a more confident
another example of the disorder of hyper- and capable child who has the tools to
responsibility.
fulfill the true potential that lies within.
Learning how to raise a child with
Do it, and you will have the satisfaction of
epilepsy is a behavioral skill, just like
being an Exceptional Parent.
learning how to play the piano is a
behavioral skill. You aren’t going to just
Conclusion
sit down one day in front of a piano and
You have learned throughout this article
play Beethoven (who had epilepsy.) To
that guilt hurts your own self-esteem and
play Beethoven well, you need someone
serves to disable your child. Give it up
to teach you how to play that piano – and (I know it won’t be easy) along with any
you have to practice. Now, let me ask
notion of trying to “make it up” to your
you; do you think learning to successfully child. Instead start celebrating the time
raise a child with epilepsy is any easier
you have together. Your child will see an
a behavioral skill than learning how to
immediate improvement in his quality of
play the piano? If you think that somehow life and you will feel happy to be a parent
you are a failure as a parent, then tell me
again.
who you had as a teacher about raising
However, after 25 years of talking to
a child with epilepsy. How long did you
thousands of parents, I am heartbroken to
get to practice before you had to do the
see epilepsy care still focus so exclusively
real thing in front of others? If you felt
on the medical treatment of the child. For
bad about some of what you read, you are most children the physical part is the least
not to blame. My guess is you never had a disabling part of the disorder. It is the
teacher.
emotional impact of epilepsy, the cultural
There is no manual and there is no
stigmas, and parents’ guilt that infect the
teacher for successfully raising a child
next generation within the family.
with a disability, let alone one with all
The result teaches disability to the
the cultural baggage of epilepsy. As
child and devastates parents’ self-esteem.
sophisticated as we think we are as a
Epilepsy is not something a child has.
civilization, we’re still figuring out the
Epilepsy is something the entire family
fundamentals of how the human mind and has. One person may have the seizure,
personality develop. We know even less
but the entire family suffers from fear,
about how children successfully develop
stigma, guilt, and the learned disability
under the challenge of medical illness and of epilepsy. You now have the knowledge
social stress. Every parent out there who
to take back control of your life and your
has raised a child with epilepsy is a hero
child’s development. The future for you
in my eyes. You have braved the almost
and your child is much brighter.
29
face2face
Mark Francis is the Client Service Manager for The Epilepsy Centre,
joining in 2005. Mark has been instrumental in developing services
for people with epilepsy in South Australia and the Northern Territory,
including e-camps for children living with epilepsy and establishing
SA’s first seizure clinic at the Flinders Medical Centre. In this issue
we learn a little about the man behind the smile and his goals for
improving the quality of life for people with epilepsy in SA & NT.
but is swimming safe for children with seizures?
W
hether we live along the coast,
or inland, water is very much
a part of our way of life. And
when summer approaches every child
looks forward to cooling off at the
beach, in the river or in the backyard
pool. Water and children go hand in
hand. But is swimming or other water
activities safe for children with seizures?
Just like other safety tips, water
precautions may vary depending on
the type and frequency of the child’s
seizures. It is advisable that all children
with seizures, regardless of the seizure
frequency or severity, and their parents
first talk to their doctor about water
safety. Some may be advised not to swim
at all, whereas others may be allowed to
swim with appropriate precautions and
supervision.
If you are a childcare worker, a teacher,
or a person who may have a child with
epilepsy in your care at some time, ask
about the child’s seizures, severity and
frequency and doctor’s recommendations
regarding swimming.
Remember, always be vigilant around
water even when the child is bathing or
showering.
Water in any context presents a
significant risk to the child with seizures.
Safety tips to consider
Inform lifeguards, swimming
teachers and pool attendants that the
child has epilepsy.
Make sure all children with a
history of seizures are supervised by
someone who knows how to swim
and can provide emergency help.
Children with frequent seizures or
seizures that impair consciousness
may need 1-1 supervision and may
not be allowed to swim in water that
is over their head.
Check all life-jackets and personal
flotation devices - make sure they
are intact and work properly.
A life-jacket or personal flotation
device is recommended for children
in or near open bodies of water or
during water activities.
Children with epilepsy should never
swim alone - always swim with a
buddy who’s a good swimmer.
If seizures are triggered by flickering
light, polarized sunglasses can help
reduce the glare off water and other
reflected surfaces.
Don’t let the child get over-tired or
too cold while in the water
Don’t allow the child to swim if
medication has been missed.
30
First Aid for seizures in water
If someone has a seizure in water e.g.
swimming pool, bath:
✓✓ Support the person in the water
with the head tilted so the face and
head stay above the surface.
✓✓ Remove the person from the water
as soon as the active movements of
the seizure have ceased.
✓✓ Check to see whether the person is
breathing and roll them onto their
side to recover.
✓✓ If the person is not breathing,
begin CPR immediately.
✓✓ Call an ambulance – 000
✓✓ Even if the person appears
to be fully recovered, call an
ambulance. The person should
have a full medical checkup as
inhaling water can cause lung or
heart damage.
Precaution: If a seizure happens out of
the water during swimming activity,
the person should not continue with
swimming or water sports that day,
even if the person appears to be fully
recovered.
“
While working at CARA I had the privilege of working in Thailand, assisting The Foundation for Children with
Disabilities and Princess Sirrindhorn Rehabilitation Hospital to set up respite services for children with disabilities
and provide training to care workers, nurses and doctors. I was able to assist in setting up family support programs
and professional development for registered nurses in workplace training. This project also took me to Northern and
Southern Thailand to provide training to Registered Nurses in caring for children with disabilities in rural areas.
I am married with two beautiful children. In my spare time, although sparingly, I enjoy gardening, playing the drums
and listening to music. I am a Christian and belong to a great church which I consider as my extended family and is a
great support network to my family.
My interest in epilepsy came from working with people with severe physical and intellectual disabilities where the
majority also had epilepsy as part of their condition. I found that in a lot of cases, my client’s seizures were either
poorly managed or overlooked. I found myself in a position to be able to advocate on their behalf and started to
research more about epilepsy and seizures.
Even though I did a lot of research into epilepsy and seizures, I had no idea of the impact that it had on so many
people’s lives both physically and socially until I commenced at The Epilepsy Centre. My passion now is to ensure
that the general community is aware of the issues facing people living with epilepsy and that the stigma surrounding
epilepsy is lifted.
In particular, my focus is directed to rural areas of South Australia and the Northern Territory where support for
people with epilepsy is particularly lacking. My vision is to see epilepsy clinics in rural areas, e-camps for children
living with epilepsy running in both South Australia and the Northern Territory and most of all to ensure that families
and people living with epilepsy have the support, care and resources they need, when they need it.
“
Summer’s just around the corner…
I have always had a passion to work with disadvantaged people for as long as
I can remember. My first job as a teenager was volunteering at Regency Park
Centre (now Novita Children’s Services) during school holidays. I then went on to
become an Enrolled Nurse and then went to University to study Nursing. Since
completing University and becoming a Registered Nurse, I have worked in such
places as the Women’s and Children’s Hospital, Julia Farr Centre, The Royal
District Nursing Service and just before commencing with The Epilepsy Centre
2 years ago, I was working as a Clinical Nurse Consultant with the Community
Accommodation and Respite Agency (CARA) which was a part of the Spastic
Centres of South Australia at the time.
I am very proud to be part of a team that is leading the way in South Australia and the Northern Territory in epilepsy
care, support, advocacy and education and look forward to the ongoing challenges of making a difference for people
living with epilepsy.
31
32
Marion Clignet
Rwanda, Aug 2007
“
“
Epilepsy made me push myself harder. I didn’t want to have an excuse
not to make it to the top and perform at my very best because of
something I couldn’t control …so I pushed harder, went faster…

Issue 2 - Epilepsy Australia

Transcription

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