against all odds - epilepsy australia · against all odds the inspiring journey of caitlin mcomish...

1 THE EPILEPSY REPORT NOVEMBER 2007

Issue No. 1, 2007

Caitlin McOmish

Michelle Bellon

coping with guiltRobert Mittan

Toba Kerson

Against all odds

epilepsy & memory

Susanne LundIBE gains voice in UN

the remarkable story of neuroscientist

when tenacity and epilepsy convergeMarion ClignetOlympic cyclist

examines the stigmatizing of epilepsy in film and TV

Swim safe this summerwater-safety for children

neuropsychologist

2 THE EPILEPSY REPORT NOVEMBER 2007 3 THE EPILEPSY REPORT NOVEMBER 2007

EditorDenise ChapmanContributing EditorsRussell Pollard, Dr Frank Vajda, Fiona Tito, Robert Cole.ContributorsMichelle Bellon, John Berrill,Kay Elphinstone, Mark Francis, Toba Kerson, Susanne Lund, Robert Mittan, Christine Walker, Prof John Willoughby.PhotographyDreamstime.com UN Photo LibraryPrint Pegasus Print Group

The Epilepsy Report is published by Epilepsy Australia Ltd818 Burke Road Camberwell VIC 3124 AustraliaTel: 03 9805 9111email: [email protected]

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:Epilepsy ACTEpilepsy Queensland IncEpilepsy Association of SA/NTEpilepsy Association of TasmaniaEpilepsy Foundation of VictoriaEpilepsy Association of WA

1300 852 853

PLUS

Mailbox 22

3EATas new dvd for pre-schoolers

8 SA’s first seizure clinic

Superannuation & chronic illness 18

Singapore Congress Update 14 Epilepsy research at Flinders15

CONTENTSSpecial feature

Researcher Toba Kersonhow film and TV stigmatizes epilepsy

Marion ClignetWhen tenacity

meets epilepsy!

Brain-damaged baby to promising neuroscientist.

Dr Caitlin McOmish

4

16

Neuropsychologist Robert Mittan

discusses coping with guilt

23

Epilepsy & Memory 6

WELCOMEThis 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.

Editor

Australian 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

Australian Red Cross forges partnership with Epilepsy SA 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.

The 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

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

Tasmania government & EATas join forces to promote epilepsy awareness program

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]

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.

Robert Cole, The Epilepsy Centre CEO with Pam Fidler, Australian Red Cross Training Services.

9

Susanne LundIBE achieves UN status!

21

Swim safe this summer – timely tips 30face2face with Mark Francis 31

National Epilepsy Helpline


“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

Dr 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.

Against all oddsThe inspiring journey of Caitlin McOmish

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


How epilepsy can affect memory

SeizuresSeizures 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.

Following seizures (post-ictal)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.

Anti-epileptic drugsAnti-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

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.

SurgerySome 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.

Anxiety and depressionYour 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.

Stress/fatigueHow 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

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 ✓

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.

We can’t change our memory but with these useful tips we can use what we have more effectively:

Rememberto ...

➡

Epilepsy & Memory

Memory 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) memoryThis 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 memoryWhen 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).

Michelle Bellon, PhDDepartment of Disability Studies Flinders UniversitySouth Australia

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.

How memories are made

Attending & encodingNothing 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.

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.

RetrievalThe 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.


IntroductionI 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 StudyIn 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 film 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

Lasting impressions of seizures and epilepsy in film and on televisionToba Schwaber Kerson DSW, PhD

routine is important for people with epilepsy to help maintain a balanced lifestyle, and manage stress/fatigue.

MnemonicsOne 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

Set realistic goals for what you can achieve �

Take sensible regular exercise and maintain physical health �

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 �

Identify humorous moments and invest in humour. �

(Rees, 2005)

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

Strategies to reduce stress

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!

The 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

Epilepsy Seizure Clinic – first for South Australia 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

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

Bryn Mawr College, Bryn MawrPennsylvania, USA.


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 French- language 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

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).

Next steps in the research – some comparisonsNow 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

Still #3 – The Terminal Man

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?

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 #1 – Medic: Boy in the Storm Still #2 – The Exorcist Still #4 – Drugstore Cowboy


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 imagesIn 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 groupsMy 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.

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 Still #5 – The Sopranos Two Tonys

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 French-language 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

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


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.

The 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 StudiesWe 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

Epilepsy Research at Flinders

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 StudiesIn 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

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.

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.

Members of the ‘Rat Lab’

In 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 research-pharmacological, 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 medicationsThe 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

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 epilepsyThere 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.

27th Int. Epilepsy Congress, Singapore 8-12 July 2007Christine Walker


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!

tenacity and epilepsy:a potent mix

Marion ClignetDenise Chapman speaks with

Hi 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…..

World champion & Olympic cyclist

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.

DENISE: When did you first experience discrimination due to your epilepsy? How did you respond?

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: Have you ever have a seizure while competing?

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: From 1991 to 2000 your record speaks for itself. Your personal achievements are remarkable and inspirational, especially competing in such

DENISE: What drove you to pursue a career as an elite sportswoman? What goals did you set for yourself? Your dreams?

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: 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.

DENISE: How did epilepsy impact on your aspirations?

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!

DENISE: Did it ever occur to you that having epilepsy would be a barrier to achieving your goals?

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!


Check Your Super RegularlyIt’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.

When can I get my superannuation?

Your personal contributions paid up to July 1999 can be paid to you when you leave a super fund. However, your post-June 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 accessYou 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

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.

Superannuation Disability Benefits

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 ClaimThere 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.

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

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.

Choice of FundUsually 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 superIf 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.

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.

Superannuation contributions not paid?

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 employerIf 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.

Superannuation & chronic illness

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.

Protect your rights!


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

Susanne Lund, IBE President speaks by phone with Dr Carlos Acevedo, Editor, IBE News

Today 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

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Superannuation Death Benefits

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.

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 claimWrite 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.

Can I get new Insurance or Superannuation?

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.

How To Find OutIf 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.

Superannuation / Insurance and Centrelink

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.

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 towww.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!


Part 3: Coping with guilt

Robert J MittanSeizures 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

How to raise a child with epilepsy

In this final article in his series on raising a child with epilepsy, Robert Mittan discusses

Approximately 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.

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

New 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.

Research shows how genetic mutationcauses epilepsy in infants

substantive session each July, which alternates between New York and Geneva, organized under the High-level 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,

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.

“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

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 suppliedEditor’s NoteFor further information on medications please contact Epilepsy Australia on 1300 852 853.


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.

GuiltTwo other cultural beliefs come

into play with the disorder of hyper-responsibility. 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.

RestitutionOur 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 hyper-responsibility 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.

RedemptionThere 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

Where Guilt Comes FromCultural 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 two-edged sword. We get credit if the child does well. But we also get the blame if our child does poorly. How often have

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.

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.”


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 three-legged 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 three-legged 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 healthcareFor 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

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

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

“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 hyper-responsibility) 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.

Guilt and the MarriageThe disorder of hyper-responsibility

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

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

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

“There is something that fear, stigma, guilt, and culture cannot overcome – it is the sheer love parents have for their child.”


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 god-like 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

Guilt and these ArticlesThere is one last source of guilt that

does not come from culture. It is the guilt you might feel after reading these articles. I have laid bare the process of how children with epilepsy are taught to be disabled. I have tried to lay it out so clearly that it nearly jumps in your face. The damaging consequences of common ways of coping with a child with epilepsy were exposed to a bright light. These ways of coping are so universal that I know many apply to you. The temptation is great for parents to feel badly about things they have done to their children in the past. Don’t do it to yourself. It is only another example of the disorder of hyper-responsibility.

Learning how to raise a child with epilepsy is a behavioral skill, just like learning how to play the piano is a behavioral skill. You aren’t going to just sit down one day in front of a piano and play Beethoven (who had epilepsy.) To play Beethoven well, you need someone to teach you how to play that piano – and you have to practice. Now, let me ask you; do you think learning to successfully raise a child with epilepsy is any easier a behavioral skill than learning how to play the piano? If you think that somehow you are a failure as a parent, then tell me who you had as a teacher about raising a child with epilepsy. How long did you get to practice before you had to do the real thing in front of others? If you felt bad about some of what you read, you are not to blame. My guess is you never had a teacher.

There is no manual and there is no teacher for successfully raising a child with a disability, let alone one with all the cultural baggage of epilepsy. As sophisticated as we think we are as a civilization, we’re still figuring out the fundamentals of how the human mind and personality develop. We know even less about how children successfully develop under the challenge of medical illness and social stress. Every parent out there who has raised a child with epilepsy is a hero in my eyes. You have braved the almost

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 hyper-responsibility, worry from the disorder of anticipation, and cultural stigmas silently conspire to control your childrearing decisions. Left hidden in the deep recesses of your mind and heart they taught your child the disability of epilepsy. That is no longer you. You have found their hiding places and you are tearing them out by their roots. You have insight beyond most parents.

You know the disability of epilepsy is a learned disability. Now you can choose not to teach disability to your child. Now you can see how childrearing decisions affect your child’s future. Now you have the understanding to grow a more confident and capable child who has the tools to fulfill the true potential that lies within. Do it, and you will have the satisfaction of being an Exceptional Parent.

ConclusionYou have learned throughout this article

that guilt hurts your own self-esteem and serves to disable your child. Give it up (I know it won’t be easy) along with any notion of trying to “make it up” to your child. Instead start celebrating the time you have together. Your child will see an immediate improvement in his quality of life and you will feel happy to be a parent again.

However, after 25 years of talking to thousands of parents, I am heartbroken to see epilepsy care still focus so exclusively on the medical treatment of the child. For most children the physical part is the least disabling part of the disorder. It is the emotional impact of epilepsy, the cultural stigmas, and parents’ guilt that infect the next generation within the family.

The result teaches disability to the child and devastates parents’ self-esteem. Epilepsy is not something a child has. Epilepsy is something the entire family has. One person may have the seizure, but the entire family suffers from fear, stigma, guilt, and the learned disability of epilepsy. You now have the knowledge to take back control of your life and your child’s development. The future for you and your child is much brighter.

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.)

The disorder of hyper-responsibility 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,

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 decision-making process. Once the therapy is set, I have found parents continually second-guess 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 hyper-responsibility can make it impossible for parents to ask for a change. If the change results in a worse outcome, the parent’s

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.

The disorder of hyper-responsibility 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

“The tremendous guilt parents face in making healthcare decisions isn’t even on the radar in most medical practices”


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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.

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.

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.

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.

Summer’s just around the corner…but is swimming safe for children with seizures?

Whether 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.

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.

32 THE EPILEPSY REPORT NOVEMBER 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…

Marion Clignet Rwanda, Aug 2007“

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against all odds - epilepsy australia · against all odds the inspiring journey of caitlin mcomish...

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