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					Issue No. 2, 2009



Wally Lewis
addresses our
 Parliamentary Friends
   of Epilepsy
 tips on managing
 Canine epilepsy
 journalist
 Julie Medew
 lifts veil on epilepsy

 neuropsychologist
 Robert Mittan
 concludes ‘beating bad seizures’

 Professor Mark Cook
 Intelligent brain implants for
 intractable epilepsy

 Gillian Davies
 Collecting experiences!

 Read JECA’s submission to the
 Inquiry into the Impact of Epilepsy
WELCOME
    Welcome to the latest edition of The Epilepsy Report.
    2009 has been an exciting year for the Australian epilepsy             CONTENTS                                             Wally Lewis helps
                                                                                  6
                                                                                                                                bring epilepsy out
movement. With the support of our Parliamentary Friends for
Epilepsy, the first-ever Inquiry into the Impact of Epilepsy in
                                                                                       Special feature
Australia was held at Parliament House, Canberra. With the
                                                                                  Report on the Inquiry
                                                                                     into the Impact of

                                                                                                                                of the shadows
call for submissions widely distributed, the Inquiry received 350
                                                                                               Epilepsy
submissions from organisations, families, individuals– people
who thought it important enough to take the time, sit down and
write to our parliamentarians on how epilepsy impacts on their
lives and the lives of the people they support, and proposing
ways to help make living with epilepsy a little easier.                                                                           A   s guest speaker at October’s
                                                                                                                                      Parliamentary Friends of Epilepsy
                                                                                                                                breakfast, past Australian Rugby League
                                                                                                                                                                            epilepsy, encouraged him to ‘come
                                                                                                                                                                            clean and get something done about it’.
                                                                                                                                                                               Wally had, in the past, considered
    The Inquiry itself was treated with the same sense of priority.
                                                                                                                                Captain Wally Lewis spoke frankly           ‘getting something done about it’, but
Key stakeholders and people with epilepsy travelled, at short
                                                                                                                                about his 20-year struggle with epilepsy.   as his seizure frequency was increasing
notice, from all states in Australia to Canberra to present to the
                                                                                                                                  Known for never taking a backward         despite medication, he now knew that he
Inquiry, conducted by Jill Hall MP, Damian Hale MP and Senator
Gary Humphries. It was just that important.
                                                                             4 Professsor                                       step during his illustrious football        had little choice, brain surgery was his      the football field when during a seizure
                                                                             Mark Cook                                          career, Wally had a reputation for being    only option.                                  he “pissed his pants” and the darkest
    The Inquiry was informed about all the challenges facing                 Intelligent brain                                  a dogged and fierce competitor on the          This decision lead him to Melbourne        moments while recovering from surgery
                                                                             implants for epilepsy                                                                                                                        when he contemplated ending it all.
                                                                                                         14
people living with epilepsy including the lack of local research                                                                football field. It was hard to reconcile    and Professor Sam Berkovic at Austin
data, stretched specialist services and the difficulty in attracting
                                                                                                              Wally Lewis                                                                                                    Many were surprised to hear that his
                                                                                                                                that public person with the one standing    Health where in February 2007 he had
                                                                                                         bringing epilepsy to                                                                                             first seizure was put down to the flu, and
young doctors to the field of epilepsy, the need for integrated
                                                                                                          Parliament House      before us telling us how introverted        successful brain surgery.
health and community services, education, and community                                                                         he had become off the field, especially        The road back to health hasn’t been        he continued to have intermittent bouts
awareness campaigns. Alongside these practical issues the                                                                       during social occasions when he was         easy with Wally describing “the two-          of the “flu” for the next seven years. It
                                                                                                                                terrified a seizure would give him away.    year roller coaster ride from surgery to      was during a Test match in Brisbane
convenors heard the individual experience, delivered movingly
                                                                                                                                  It became apparent that the ‘aloof’       returning to work feeling more like five      when he took a heavy knock in a tackle,
at times, of the impact epilepsy has on day-to-day lives.
                                                                                                                                or ‘arrogant’ tags that often described     years, but the destination was worth the      that a seizure followed. Subsequent
    A Report of the proceedings and recommendations will be
                                                                                                                                Wally in the media, was his way of          journey.                                      medical tests finally diagnosed his
tabled in Parliament early in 2010. With our Parliamentary                                                                                                                                                                ‘bouts of flu’ as seizures: Wally had
Friends as advocates, we are optimistic that their Report will be            16 Julia Medew
                                                                              Award winning journalist
                                                                                                                                dealing with the unpredictable nature
                                                                                                                                of epilepsy. Anxious that a seizure
                                                                                                                                                                               “It was a long and intense battle with
                                                                                                                                                                            some very scary and very frustrating          epilepsy.
a catalyst for lasting change.                                                                                                                                                                                               For the next twenty years Wally and
                                                                                                                                would occur in the public eye he would      periods along the way.
                                                                                                         20 Robert Mittan       keep interviews short, while socially          “But now that I am out the other side,     his wife Jacqui kept his epilepsy a secret.
                                                                                                                                                                                                                          While the father of three said he never
                                                                                                         part three on how to   he would stand back, remaining on the       I’m very happy that I did what I did and
                                                                                                          ‘beat bad seizures’   fringe of the conversation in case he had   we had the problem looked after and it is     spoke about it to his kids not wanting
                                                           Editor
                                                                                                                                to quickly find a quiet space, often the    now controlled,” he told those present.       to “burden them with his concerns and
                                                                                                                                men’s room, for the seizure to pass.           As Wally’s battle became public, he        insecurities”, Jacqui had quietly told
 Editor                            Views expressed and information                                                                For Wally explained that he always        received hundreds of cards and letters        them what to look for if he had a seizure
 Denise Chapman                    included herein do not necessarily                                                           had a warning that a seizure was coming     following his surgery. Amazed that his        in their presence. Until that fateful
 Contributing Editors              reflect official policies of Epilepsy
                                                                                                                                and if he got away in time he could         fight had inspired others to be tested for    night in November 2006, they had never
 Dr Frank Vajda, Robert Cole.      Australia. Articles covering
                                   medical aspects are not intended
                                                                             24 Gillian Davies                                  continue to keep his seizures a secret.     epilepsy or undergo the same radical          seen him have a seizure, he had always
 Contributors                                                                Collecting experiences                               Keeping secrets is what people with       surgery, Wally told how he made a             managed to hide it from them.
                                   to replace competent medical, or
 Gillian Davies, Alison Hitchcock, other health professional advice.                                                            epilepsy become very good at until          promise to himself to personally contact         For all who attended the breakfast
 Jo Jeisman, Dr Robert Mittan,                                                                                                  the unpredictable nature of epilepsy        each and every one. “It took some             Wally’s frank admissions of his personal
                                   All content is copyright and may
 Julia Medew, Jessica Purnama.                                                                                                  gives them up. And this is precisely        time,” he said, “but I eventually made        struggle really drove home the far-
                                   not be reproduced without prior
                                                                                                                        3
                                                                           PLUS




                                                                               Wally Lewis addresses Parliamentarians           what happened to him in November            contact either by telephone or letter, to     reaching social impact epilepsy has on
                                   permission. Contributions are
 Photography                                                                                                                                                                                                              people’s lives.
                                   welcome. The Editor reserves the            JECA’s submission to epilepsy Inquiry 7          2006. While presenting the sports news      thank them for their support.”
 Dreamstime.com                                                                                                                                                                                                              Epilepsy now occupies a prominent
                                   right to edit content for reasons of                                                         on Channel 9 in Brisbane, Wally told           Having hidden his epilepsy for 20
                                   space or clarity.
                                                                               Everything Epilepsy: new online forum 10         how he had a seizure on-air. His worst      years, Wally told how he decided to           place in Wally’s life, sharing the stage
 Print Pegasus Print Group
                                                                               Jessica Purnama: seizures & carer burden 11      nightmare had become a reality and the      finally set the record straight and dispel    with his great football career.
                                                                                                                                                                                                                             “I probably spend more time talking
 The Epilepsy Report is published   Epilepsy Australia Affiliates:             Australian Pregnancy Register: 10 years on 13    “shame and embarrassment” he had kept       the many rumours that were circulating.
 by Epilepsy Australia Ltd          Epilepsy ACT                                                                                hidden for more than 20 years was now       His book Out of the Shadows: A                to people about epilepsy than I do about
 818 Burke Road                     Epilepsy Queensland Inc
                                                                               Parliamentary Friends Breakfast 14               there for some 2 million viewers to see.                                                  football. I have to say, it’s something that
                                                                                                                                                                            Champion’s return to the Spotlight has
 Camberwell VIC 3124 Australia      Epilepsy Association of SA/NT              Epilepsy Australia’s Everyday Heroes 18            Embarrassed and humiliated, he            recently been published.                      I feel very, very passionate about,” he
 Tel: 02 9674 9966                  Epilepsy Association of Tasmania
                                                                               Canine Epilepsy 26                               said all he could think of was how he          “People thought I was drunk on-air.        said.
 epilepsy@epilepsyaustralia.net     Epilepsy Foundation of Victoria                                                             had let everyone down, particularly,                                                         Today, Wally is happy to be an
                                                                               face2face with Robert Cole 27                                                                There were some really unusual rumours
 www.epilepsyaustralia.net          Epilepsy Association of WA                                                                                                                                                            advocate for epilepsy, to be the public
                                                                                                                                his employer. He made the decision to       too, so I had to be open. I had to tell the
                                      National Epilepsy Helpline                                                                “jump rather than be pushed”, but found     lot,” he said.                                face of a condition that for too long has
                                                                                                                                this wasn’t necessary when the station         Not holding back, he revealed the          been hidden in the shadows.
                                         1300 852 853                                                                                                                                                                        We thank him for that.
                                                                                                                                manager, who was aware of Wally’s           embarrassing moments on set and on
2      THE EPILEPSY REPORT DECEMBER 2009                                                                                                                                                                              THE EPILEPSY REPORT DECEMBER 2009             3
     Intelligent
     Brain
     Implants
     for Epilepsy
     Control                                                                                                                              Figure 1.                                                          Figure 2.


                                                                                                                                          Medical Bionics interfaces               of the brain. Arrays of electrodes              Once a seizure is detected a
Clinical leader of epilepsy research at                                                                                                 electronic devices with organs             will monitor the complex patterns             therapeutic electrical stimulus
                                                                                                                                        in the body including the ear, the         of activity within the brain. These           can be applied to electrodes
the Bionic Ear Institute, Professor                                                                                                     eye, and the brain. The lessons            signals will be sent to a processor           close to the focus to suppress
Mark Cook and bionic technology in                                                                                                      learnt at the Bionic Ear Institute         implanted in the head (similar to a           the seizure (see Figure 2). The
                                                                                                                                        from stimulating nerves in the ear         Bionic Ear stimulator) and proceed            implantable neurostimulator
the treatment of epilepsy.                                                                                                              are now being applied in Intelligent       to detect and predict the epileptic           will enable recipients to live a
                                                                                                                                        Brain Implants.                            seizure (see Figure 1). Using many            near-normal life free from the
                                                                                                                                          A skilled neurosurgeon will              electrodes simultaneously allows us           anxiety and other consequences
                                                                                                                                        implant electrodes on the surface          to identify the focus of the seizure.         of epilepsy.




     T he majority of people diagnosed
       with epilepsy achieve seizure
 control with anitepileptic medications.
                                              Hospital, Melbourne and Senior
                                              Research Advisor at the Bionic Ear
                                                                                          at the Bionic Ear Institute is focused
                                                                                          on the development of just such an
                                                                                                                                      The Bionic Ear Institute
                                              Institute. The team consists of experts     implantable device. A key of this
 However there are those for whom these       in the fields of neurology, neurosurgery,   research is the development of signal
 drugs produce a number of undesirable
 side effects and their efficacy cannot be
                                              biomedical engineering and bio-signal
                                              processing; they bring a wealth of
                                                                                          processing algorithms to monitor the
                                                                                          electrical activity of the brain and make     T   he Bionic Ear Institute (BEI) is an
                                                                                                                                            independent, non-profit, research
                                                                                                                                      organisation working in the field of
                                                                                                                                                                                     ƒ    Brain implants designed to
                                                                                                                                                                                          monitor, diagnose and treat a
                                                                                                                                                                                          variety of neurological disorders
                                                                                                                                                                                                                                   The BEI works closely with many
                                                                                                                                                                                                                                 networks and collaborators.
                                                                                                                                                                                                                                   More information about the work
 guaranteed. Because of these limitations     experience to both the clinical and         rapid decisions to detect and predict
 there remains a large proportion of          engineering aspects of research.            seizures. This work is conducted by         medical bionics.                                    including epileptic seizures           of The Bionic Ear Institute, current
 people who must live with uncontrolled         One promising avenue for potential        research engineer, Alan Lai and PhD           It was established in 1986 to continue       ƒ High-fidelity bionic ears that will       research projects and research, clinical
 seizures.                                    new treatments involves the targeted        student, Dean Freestone. The second         innovative research on the bionic ear,              improve speech understanding in        and commercial collaborators, visit
    In addressing this unmet therapeutic      delivery of electrical stimuli to the       major component, overseen by research       which had been developed in the late                noisy environments and unleash         www.bionicear.org.
 need, the Bionic Ear Institute has for       area of the brain that is responsible       engineer Tim Nelson, relates to the         1970s by Professor Graeme Clark and                 the gift of music for deaf patients.
 a number of years undertaken basic           for causing the seizures. Already, a        development of electrical stimulation       his team at the University of Melbourne.       Using a multidisciplinary approach,
 research into many aspects of epilepsy,      handful of patients have been involved      techniques that can suppress or prevent       The Institute’s experience and             along with proven experience of working
 including seizure generation, detection      in preliminary investigations under the     seizures in the brain. Promising results    discoveries with the bionic ear led to       from conception to commercialisation,
 and treatment. Work in this field has        guidance of Professor Cook.                 have seen this work expanded to include     developments in other areas of medical       this research aims to deliver technologies
 been of a highly collaborative nature          As highlighted by the widespread          preliminary investigations in human         bionics and it is now focussing on four      to secure better health outcomes for
 also involving researchers from St           use of cochlear implants for deafness,      patients.                                   key research areas:                          people, reducing the burden of disease
 Vincent’s Hospital, the University           implantable neurostimulators hold              With ongoing research and the              ƒ A bionic eye that will provide           and disabilities.
 of Melbourne and the University of           significant potential for a range of        integration of results across these                 independence for the blind and         The Institute’s researchers come
 Wollongong.                                  neurological disorders. Some sufferers      objectives, the team firmly believes                will eventually allow them to read   from a diverse range of disciplines                             Editorial provided courtesy of
    Professor Mark Cook, a neurologist        of Parkinson’s disease show massive         that novel therapies and breakthrough               large format print                   including neurology, biology, audiology,
 specialising in the treatment of epilepsy,   improvement in their tremors with           technologies can be developed and             ƒ Nanotechnology-based, targeted           physiology, engineering, clinical
 is the clinical leader of the epilepsy       these types of devices and it is likely     deployed to aid in the treatment of                 drug delivery systems for the        research, speech science, mathematics
 research program team. Professor Cook        that a similar approach can be adopted      patients with epilepsy.                             efficient delivery of therapeutic    and materials science.
 is Director of Neurology at St Vincent’s     for epilepsy treatment. The research                                                            drugs without adverse side effects


 4    THE EPILEPSY REPORT DECEMBER 2009                                                                                                                                                                                      THE EPILEPSY REPORT DECEMBER 2009                 5
                                                                                                                                                                                         The Epilepsy Report is pleased to publish the Joint Epilepsy Council of Australia’s
                                                   Report on the Inquiry into the                                                                                                        submission to the Parliamentary Friends of Epilepsy Inquiry into the Impact of Epilepsy
                                                   Impact of Epilepsy in Australia today                                                                                                 in Australia Today.
                                                                                                                                                                                         In addressing the Terms of Reference of the Inquiry, this submission draws heavily on the report, A Fair Go for People

                                                        I n order to fully understand the impact
                                                          epilepsy has on families around the
                                                     country, the Parliamentary Friends of
                                                                                                                                during the morning where key organisations
                                                                                                                                were invited to make a statement to the
                                                                                                                                Inquiry and answer questions in support of
                                                                                                                                                                                         Living with Epilepsy in Australia, prepared by JECA for our Parliamentary Friends. The full text of this report is available
                                                                                                                                                                                         on the Epilepsy Australia website http://www.epilepsyaustralia.net/Advocacy/Submissions/Submissions.aspx

Sen Gary Humphries and Iestyn Rawlings (ACT)         Epilepsy agreed to hold an Inquiry into the                                their submission. Those who presented in
                                                     Impact of Epilepsy in Australia today so that                              the morning were: Mr Graeme Shears, Ms
                                                     Senators and Members of Parliament can                                     Helen Whitehead and Ms Clare Thorne,                     Submission of the Joint Epilepsy Council of Australia
                                                     develop an understanding of the disorder and                               representing the Joint Epilepsy Council                    The Joint Epilepsy Council of Australia (JECA) welcomes           between 352,000 and 880,000, with some 2.6 million–3.5
                                                     develop strategies to work with people and                                 of Australia (JECA) on behalf of all                     the Parliamentary Friends of Epilepsy Inquiry into the Impact       million Australians affected over their lifetime. This broad
                                                     organisations to assist individuals and their                              Australians living with epilepsy; Mr Glenn               of Epilepsy in Australia today.                                     range poses obvious challenges for epilepsy organisations
                                                     families.                                                                  Moore representing Aurora Bioscience                       This is the first time epilepsy has received the attention of     trying to meet the unmet needs of this population today, and
                                                        Submissions were called for in September,                               and the case for supporting vagal nerve                  our Federal Members and Senators and JECA commends the              planning to meet their needs in the future.
                                                     with the Inquiry held in Canberra on 30th                                  stimulators; Professor Mark Cook on behalf               initiative taken by our Parliamentary Friends of Epilepsy.            It is generally acknowledged that epilepsy carries an
Damian Hale MP and Ian Thompson (ACT).               October. With the support of members of                                    of the Epilepsy Society of Australia, Dr                   Our constituency applauds the Parliamentary Friends of            excess mortality of 2–3 times that of the general population;
                                                     the Joint Epilepsy Council of Australia                                    Christine Walker from the Chronic Illness                Epilepsy for providing this forum for people living with            sudden unexpected death in epilepsy, accidental death such
                                                     (JECA), notice of this inquiry and the call                                Alliance, Drs Sophie Calvert and Kate Riney              epilepsy, their families, carers and support organisations to       as drowning or from injury, and suicide. Approximately 300
                                                     for submissions were widely distributed to                                 Co-Chairs of the Queensland Paediatric                   present the experience of epilepsy as it exists in Australia        epilepsy-related deaths occur in Australia each year with
                                                     association members, disability networks,                                  Epilepsy Network, and Ms Joan Hughes,                    today.                                                              approximately 150 of these deaths being attributed to sudden
                                                     government agencies and via the internet.                                  CEO Carers’ Australia.                                     We hope that the submissions to the Inquiry form a                unexpected death in epilepsy (SUDEP).4 The risk of suicide is
                                                     JECA is pleased to report that around 350                                     The afternoon session was a roundtable                compelling understanding of the realities of living with            increased in most populations of people with epilepsy5 while
                                                     submissions were received; a number that                                   where all those attending were given the                 epilepsy in Australia today, and that Members and Senators          sudden epileptic seizures can cause accidents or injuries that
                                                     the convenors considered remarkable. They                                  opportunity to make a statement to the                   are rightly moved to advocate within the Parliament for             may be fatal, including drowning.6 The lack of a uniform
                                                     had not taken into account that for the first                              Inquiry. Those present included people                   systemic and sustainable change.                                    approach across Australia in the documentation of the
Dr Sophie Calvert (Qld), Helen Whitehead
(JECA) and Dr Kate Riney (Qld).                      time people living with epilepsy in Australia                              living with epilepsy, parents, siblings,                   Such changes as recommended by JECA will enable all               circumstances surrounding an epilepsy-related death and the
                                                     had the opportunity to tell their story to                                 and neurologists from Victoria, NSW,                     those living with and coping with the far-reaching impacts of       certification of sudden unexpected death in epilepsy (SUDEP)
                                                     willing ears. Submissions were received from                               Queensland and the ACT. The Inquiry                      this ‘invisible condition’ to participate fully in all aspects of   suggests that these figures are understated.
                                                     individuals and their families, family support                             heard, at times quite movingly, how                      Australian life without the fear of stigma or discrimination.         Morbidity in epilepsy reveals that people with epilepsy
                                                     organisations, disability services workers in                              epilepsy impacts on many lives from many                   JECA is pleased to formally respond to each of the Terms          suffer from physical and psychiatric effects of their seizure
                                                     the field.                                                                 perspectives, and the desperate actions                  of Reference of the Inquiry in the following pages and in           disorder, with depression and anxiety disorders rating highest
                                                        A mini-hearing was first held in Darwin on                              people take just to get by.                              conclusion makes a series of recommendations to the Inquiry,        among people with epilepsy. 7
                                                     the 23rd September, attended by convenors                                     In thanking all who attended, the                     supported by the accompanying attachments.
                                                     Jill Hall MP and Damian Hale MP, Senator                                   convenors stated that they will now gather                                                                                   b) Gaps in our understanding regarding
                                                     Trish Crossin, David Hardy (Office of                                      all the information they have received and                                                                                   the incidence, prevalence, mortality and
Jill Hall MP and Robert Cole (JECA).
                                                     Damian Hale) Mark Francis (Client Services                                 will produce a report with recommendations               a) What is known about the incidence,
                                                                                                                                                                                         prevalence, mortality and morbidity of                              morbidity of Epilepsy in Australia
                                                     Manager, Epilepsy SA & NT), Natalie                                        which will be tabled in both houses of
                                                     Reimer, (local epilepsy support worker,                                    Parliament, with the Member for Solomon,                 Epilepsy in Australia                                                  Epilepsy can be difficult to diagnose. It is often confused
                                                     Epilepsy SA & NT), and constituents Keith                                  Mr Damian Hale, agreeing to put forward                    Little is known about the epidemiology of epilepsy in             with other conditions and the lack of a clear beginning or end
                                                     and Mia Fairly and their son, Titan. The                                   a Private Member’s Bill in the House of                  Australia so we must rely on international studies when             can complicate epidemiological estimations. Reluctance to
                                                     issues raised at this hearing were minuted                                 Representatives in the new year.                         assessing burden of disease and injury in epilepsy1 , when          disclose the condition also limits research. While epilepsy
                                                     and the documents tabled at the Inquiry.                                      And we thank our Parliamentary Friends                allocating scarce funds and resources, and when planning            may diminish in some individuals, the psychosocial effect
                                                        The Inquiry was conducted on Friday, 30                                 who, in such a short time, have demonstrated             delivery of services.                                               of epilepsy can endure beyond the active phase of the
                                                     October by Senator Gary Humphries, Jill                                    their commitment to better understand the                  From international data the prevalence of epilepsy is             condition. Effects on education, self esteem, or employment
(l-r)Jill Hall MP, Damian Hall MP, Mark Francis,     Hall MP, and Damian Hale MP at Parliament                                  impact of living with epilepsy.                          generally taken as between 4 and 10 cases per 1000 persons,         opportunities may be carried for many years.8
Natalie Reimer, Keith & Mia Fairly with their
son, Titan at the hearing in Darwin.                 House. The more formal hearing took place                                                                                           and the overall incidence as about 50 cases per 100 000                In Australia epilepsy generally remains unidentified or
                                                                                                                                                                                         persons.2 Cumulative incidence or the number of people who          poorly identified in national health data collections with
                                                                                                                                                                                         will have epilepsy in their lifetime is estimated to be between     Australian data sources quoting international study figures
                                                                                                                                                                                         3–4 per cent of the population.3                                    when discussing burden of disease and injury in relation to
                                                                                                                                                                                           Extrapolation of this data to the Australian population           epilepsy.
                                                                                                                                                                                         (22 million) suggests that the total number of people with             There is little on the epidemiology of epilepsy in Australia:
                                                                                                                                                                                         epilepsy in Australia today falls somewhere between 88,000          the foundation work of the Tasmanian Epilepsy Register by
                                                                                                                                                                                         and 220,000, with some 660,000–880,000 Australians                  D’Souza identified areas for further study9, while the SEISMIC
                                                                                                                                                                                         having epilepsy in their lifetime. Epilepsy does not happen         Study currently undertaken by The George Institute Research
                                                                                                                                                                                         in isolation, it is a ‘family condition’ that impacts on all        has reported pilot study results10. Commonwealth investment
Jill Hall MP and Denise Chapman (JECA).            Professor Mark Cook (Epilepsy Society of Australia) presenting to   Kirrily Flanagan (Vic), Clare Thorne (JECA), Jean Foster (NSW),   members, and it is estimated that those affected today number       is necessary to foster ongoing and sustainable epidemiological
                                                   the Inquiry.                                                        Socrates Kochinos (ACT) and Allison Johnston (NSW).                                                                                   research.

6       THE EPILEPSY REPORT DECEMBER 2009                                                                                                                                                                                                                                      THE EPILEPSY REPORT DECEMBER 2009           7
  Our understanding of the epidemiology of epilepsy in              Employment                                                           d) The adequacy of current models of                                 As with all people living with chronic conditions, people
Australia could be greatly improved by the systematic                 People with epilepsy have been shown to be up to three             medical care                                                       with epilepsy are disadvantaged by the divisions that exist
collection and analysis of relevant epilepsy data through           times more likely to be at risk of unemployment and subject                                                                             among all the essential services which vary in quality from
                                                                                                                                          ‘No seizures, no side effects’– US National Center for
government agencies. This could be achieved by:                     to underemployment, relative to their levels of skill and                                                                               region to region and state to state. These services range across
                                                                                                                                         Chronic Disease Prevention and Health Promotion.
                                                                    qualifications, than people with other chronic illnesses.                                                                               the spectrum of health, education, community, social and
ƒ ensuring the National Health Survey gathers information
                                                                    Underemployment contributes very significantly to the                                                                                   disability sectors.
  about epilepsy and seizure prevalence;                                                                                                   As a community based agency JECA recognises that
ƒ supporting the inclusion of questions relating to attitudes       economic burden of epilepsy. For many people with epilepsy,
                                                                                                                                         research indicates Quality of Life (QoL) in epilepsy is strongly
  towards epilepsy in the Australia Survey of Social Attitudes;     employment is a major quality of life issue that impacts                                                                                e) Practical measures that will better
                                                                                                                                         related to seizure frequency and therefore the organisation
  and                                                               heavily on their financial status and psychological wellbeing.                                                                          support people living with epilepsy
                                                                                                                                         has a fundamental responsibility to advocate strongly for gold
                                                                      Stigmatisation in the workforce is common and can                                                                                       While epilepsy is a lower prevalence condition, the
ƒ making the study of epilepsy an area of targeted assistance by                                                                         standard medical service, which provides the best opportunity
                                                                    affect employment, career advancement, and personal and                                                                                 psychosocial, educational and economic impacts outweigh
  the National Health and Medical Research Council                                                                                       for complete seizure control.
                                                                    professional relationships with colleagues.14                                                                                           the clinical symptoms, creating particular challenges for the
ƒ supporting research into the morbidity of epilepsy and its                                                                               People with epilepsy often appear to be invisible in health
                                                                      Given the high level of unemployment and intermittent                                                                                 delivery of social and health services.
  impact on quality of life;                                                                                                             policy17 and the opportunity now arises with the recently
                                                                    nature of seizure control the number of people with epilepsy                                                                              In building on principles of social inclusion, the attached
ƒ ensuring that a national uniform approach is adopted in the                                                                            published Final Report of the National Health and Hospitals
                                                                    engaged in the full time workforce is low. Subsequently the                                                                             Report outlines creative strategies across a range of issues that
  certification of epilepsy-related death, especially sudden                                                                             Reform Commission – A Healthier Future For All Australians:
                                                                    number of people receiving government support such as the                                                                               will ensure that people living with epilepsy receive equitable
  unexpected death in epilepsy (SUDEP).                                                                                                  Final Report, for epilepsy to be included in these major health
                                                                    Disability Support Pension is likely to be higher. Government                                                                           care and access to services.
                                                                                                                                         reforms currently being considered by the government.
c) The barriers to social and economic                              agencies such as CRS Australia, Centrelink, Job Network
                                                                                                                                           Mapped against this Report, JECA considers the most
participation for people living with epilepsy,                      Providers and other vocational organisations need to be fully                                                                           Recommendations
                                                                                                                                         important health issues in epilepsy to be:
                                                                    equipped to understand epilepsy, its impact on the person, and                                                                             In our recommendations to the Inquiry, JECA has identified
including education, employment, and
                                                                    the person’s individual needs, in order to effectively assist the    ƒ The prevalence of epilepsy among Aboriginal and Torres           six key areas that it believes will produce systemic and
transport.
                                                                    person with epilepsy to gain employment.                               Strait Islander peoples.18                                       sustainable change in delivering a ‘fair go’ for all Australians
  “The social consequences of epilepsy are often more                                                                                    ƒ Access to services for people living with epilepsy in remote     living with epilepsy.
difficult to overcome than the seizures themselves.”                Transport                                                              and rural areas.
                                                                                                                                                                                                            1. An improved understanding of the impact epilepsy has
World Health Organization                                              Transport and travel is something that most people take for       ƒ Timely access to quality care in public hospitals including
                                                                                                                                                                                                               on Australia, its people and its economy by ensuring
                                                                    granted, but it is clearly very difficult for many people living       improved access to specialist care.
                                                                                                                                                                                                               the National Health Survey gathers information about
Stigma                                                              with epilepsy to get from place to place.                            ƒ Timely access to investigative procedures such as
                                                                                                                                                                                                               epilepsy and seizure prevalence, supporting the inclusion
  Superstition and stigma have surrounded people with                  In a recent survey, only one third of people living with            electroencephalographic (EEG) recordings, magnetic
                                                                                                                                                                                                               of questions relating to attitudes towards epilepsy in the
epilepsy for thousands of years, creating formal and informal       epilepsy drive their own car and of this group, over half have         resonance imaging (MRI), video-EEG and positron emission
                                                                                                                                                                                                               Australia Survey of Social Attitudes, and supporting more
barriers to participation in community life, many of which still    had their driving license suspended at some time. People with          tomography (PET) for adults and especially children.
                                                                                                                                                                                                               detailed applied social research into the morbidity of
exist. Seizures can challenge the norms of social behaviour;        epilepsy spend an average of $37.42 a week on transport.             ƒ Immediate inclusion in the National Chronic Disease
                                                                                                                                                                                                               epilepsy and its impact on quality of life.
they are unpredictable, and in some cases involve unusual           The cost of taxi transport limits travel for over half of those        strategy. Whilst epilepsy may not fit easily into a generic
physical actions and loss of control over bodily functions.         with epilepsy, with 23% unable to afford travel by taxi.               chronic disease management program (CDM), issues such as         2. An appropriate proportion of our world-class research effort
Due to the lack of community education and understanding            This is doubtless due to a number of factors from inability            better understanding one’s condition, improved self-efficacy        targeted to the better diagnosis and treatment of epilepsy by
or erroneous perceptions of epilepsy many people living with        of many people with epilepsy to work full time and their               and enhanced doctor-patient communication are all features          making the study of epilepsy an area of targeted assistance
epilepsy are discriminated against or stigmatised. In Australia,    consequently lower incomes, the generally heightened costs of          of chronic disease self management, that would benefit              by the National Health and Medical Research Council.
the Human Rights Commission reported that epilepsy is often         living with chronic illness, fear of having a seizure while on         people with epilepsy.19                                          3. Communities that are increasingly aware of epilepsy; what
experienced as a severe social handicap due to the stigma           public transport, and the inadequacy (as well as the national        ƒ Resourcing primary care practitioners with referral pathways        it is, how to manage it, so that people with epilepsy can
attached to it.11                                                   inconsistency) in travel assistance for people with epilepsy.15,16     to specialist epilepsy management, especially in the area           live, work and be educated without stigma and be active
  A recent survey conducted by JECA found that 53% of                  Almost all people diagnosed with epilepsy who hold a                of diagnosis and initial treatment, and referral pathways to        community participants through a targeted national
respondents have experienced discrimination at some point           driving license, will have their license suspended for a certain       professional non-medical community services.                        epilepsy awareness campaign.
and of those, 51% have experienced discrimination in the last       period time, the minimum being three months, until they can          ƒ Integrating acute care and community epilepsy services thus
12 months. The most common place for discrimination is the                                                                                 strengthening primary health care services20 by focusing         4. Workplaces that are informed, free of stigma, and support
                                                                    show seizure control. This can result in restricted or loss of
workplace, followed closely by educational institutions.12                                                                                 on proper diagnosis, treatment and patient adherence thus           those with epilepsy to remain in employment through
                                                                    employment, social isolation and increased dependence on
                                                                                                                                           minimising avoidable hospitalisations.21                            support to develop and undertake workplace awareness
                                                                    family, friends, public transport, and taxis for mobility.
Education                                                              For those whose epilepsy is not controlled, driving will          ƒ Strengthening consumer engagement and voice through                 programs.
  Epilepsy is a chronic disorder that significantly affects         never be an option, and they will always have to rely on other         promoting an understanding of and positive attitudes to          5. Health services that reflect world’s best practice in
education outcomes. Barriers to academic achievement                forms of transport to get around. However for those who do             epilepsy through the National Curriculum for schools using          promoting the right care by the right health professional
include psychosocial, medication-related, and epilepsy-related      not qualify for a license, are not considered severe enough            JECA’s epilepsy-friendly school program as a model22; and           in the treatment and management of epilepsy by ensuring
factors associated with learning disabilities, resulting in lower   to be able to participate in State or Territory taxi transport         empowering consumers to make fully informed decisions               that primary care teams are funded to support the
retention rates. Academic under-achievement can also be             subsidy schemes, and do not have family or carers to rely on           about their health management: annual review, improved              multidisciplinary needs of people with epilepsy.
related to teacher knowledge of epilepsy and its management         for transport, the fear of having a seizure on public transport        seizure control, new medications, generic medications, fewer
in the classroom, teacher attitude towards students with                                                                                                                                                    6. Support people with epilepsy and their carers so that they
                                                                    can prove debilitating and isolating. The lack of public               side effects, and surgery options.
epilepsy, teacher expectation.13                                                                                                                                                                               are assisted in their pursuit to manage their condition and
                                                                    transport in rural and remote areas can be isolating adding to         Public health policy in Australia does not define best
  The stigma associated with epilepsy can make it difficult                                                                                                                                                    actively participate in the community by supporting the
                                                                    feelings of social exclusion.                                        practice frameworks for epilepsy care. Initiatives such as First
for students to feel included with their peers. Even in the early                                                                                                                                              establishment of a national epilepsy support office, to
                                                                                                                                         Seizure Clinics, focusing specifically on new onset seizures,         represent the needs of people with epilepsy and their carers,
years, children with epilepsy start to experience the barriers
                                                                                                                                         have been instigated in some states but these have been               and to work with National and State bodies.
brought about by their condition when they can’t attend school
                                                                                                                                         initiated by practitioners working in strong epilepsy centres
camps, restricted participation in school swimming carnivals,
                                                                                                                                         rather than as part of national health care policy.23                                                             Continued page 8
sporting events and school excursions.
8    THE EPILEPSY REPORT DECEMBER 2009                                                                                                                                                                                         THE EPILEPSY REPORT DECEMBER 2009            9
                 New 24/7 online forum:                                                                                                                                                     Addressing burden in carers
                 Everything Epilepsy @                                                                                                                                                      of adults with epilepsy and
                                         www.meningiomamommas.org                                                                                                                           nonepileptic seizures
  A   unique partnership has been formed
      between Epilepsy Australia and
American-based Meningioma Mommas
                                                     to Liz, seizures often arise from these
                                                     tumours and epilepsy becomes another
                                                     challenge for those affected to overcome.
                                                                                                           has been seizure-free and medication-free
                                                                                                           for ten years.
                                                                                                              Lindy is unshaken in her belief that
                                                                                                                                                                                            Jessica Purnama, medical student, University of Melbourne
to create a 24/7 online epilepsy forum:
Everything Epilepsy.
                                                        Through regular emails Lindy and
                                                     Liz exchanged information about
                                                                                                           Epilepsy ACT saved her son’s life and
                                                                                                           since that day has volunteered to assist                                           W     e know that people with epilepsy
                                                                                                                                                                                                    depend on their families or
                                                                                                                                                                                            friends for various reasons, including
                                                                                                                                                                                                                                           Carer burden in adult
                                                                                                                                                                                                                                           epilepsy and NES
  Meningioma Mommas is a non-profit                  meningiomas and epilepsy. Liz had                     where ever she could – including several                                                                                          Unfortunately, carer burden in adult
foundation with a unique 24/7 online                 trouble getting quality information about             terms as president of Epilepsy ACT.
                                                                                                                                                                I spent one year doing      supervision, help with daily activities        epilepsy and NES has not received much
forum that offers hope, friendship and               epilepsy in the US and as fate would have                Through this exchange of information              clinical research in        and medications, and transportation.           attention. Only two studies investigated
laughter to those newly diagnosed with               it, Lindy’s son had been diagnosed with               and phone calls, a long distance                     the epilepsy Video          Witnessing seizures can often be a             carer burden in adults with epilepsy.
                                                                                                                                                                                            traumatic experience for carers. Carers
meningioma as well as to long term                   epilepsy from a young age and she had                 friendship between Lindy and Liz was                 EEG Monitoring unit,        can be physically, emotionally or
                                                                                                                                                                                                                                           Westphal-Guitti et al. (5) found mild to
survivors and caregivers during their                acquired a lot of information over the                forged and out of that came a business                                                                                          moderate burden in carers of adults with
journey. Founded by Liz Holzemer in                  years. Dealing with her son’s difficult to            relationship, with Lindy becoming
                                                                                                                                                                as part of my medical       socially affected.                             juvenile myoclonic and temporal lobe
2003 (herself a meningioma brain tumour              control seizures and the mind-altering                Executive Director of Meningioma                     degree requirement.           Some people experience episodes              epilepsy. Lane et al. (6) found that 20%
survivor) this organisation has a unique             side effects of medication, Lindy became              Mommas in 2004.                                      The experience led          that mimic epileptic seizures, but             carers of post-surgical epilepsy patients
                                                                                                                                                                                            unlike epilepsy these are not caused
Australian connection.                               researcher and advocate as she struggled                 Everything Epilepsy forum further                 to an interaction with                                                     experienced significant burden. No study
  Lindy Klarenbeek, who lives in                     to find appropriate treatment for her son.            strengthens this unique connection                                               by abnormal brain waves. These                 has investigated carer burden in NES.
                                                                                                                                                                many patients with          episodes are known as non-epileptic
the ACT, first came in contact with                  This led her to Epilepsy ACT where they               providing the opportunity for all people
Meningioma Mommas while she was a                    were able to provide her with the research            living with epilepsy, not just those living          seizures and their carers   seizures (NES). When people respond            Who are at risk of developing
caregiver to her aunt who was diagnosed              she was looking for that documented                   with meningiomas, to share their personal            and listening to their      to emotional distress by having                high carer burden?
                                                                                                                                                                                                                                             Generally, we think that carer
with seven meningiomas.                              contra indications of antiepileptic                   experiences of epilepsy.                             experiences.                seizures in the form of convulsions
                                                                                                                                                                                                                                           burden increases with the frequency
  A meningioma is a mainly benign                    medications. Armed with this knowledge                   It’s easy – just go to www.                                                   or unresponsiveness, the episodes are
(non-cancerous) tumour that grows out of             and a recommendation to see an epilepsy               meningiomamommas.org and register at                                             called psychogenic NES (PNES, or               of seizures, or if seizures take form of
the meninges, the membranes that wrap                specialist in Sydney, her son’s life                  Meet Minds Online. It only takes a few
                                                                                                                                                                Through this project,       pseudoseizures). Other NES may include         dramatic convulsions. However, both
the brain, particularly the one known as             changed. While he still struggled with                minutes and you’re on your way.                      I hope to convey a          physiological phenomena such as cardiac        studies did not find these factors or
                                                                                                                                                                                                                                           sociodemographic factors (age, gender,
the arachnoid layer. The tumour typically            seizures, he no longer suffered psychotic                                                                  message to the carers:      syncope, sleep disorder, and migraine (1).
                                                                                                                                                                                            Similar to people with epilepsy, people        etc.) to be associated with burden. They
grows slowly and doesn’t spread to any               events and Lindy was no longer terrified                                                                   that we care about them     with unmanaged NES may experience              found that high burden was associated
other part of the body. As happened                  that he would take his own life. Today, he
                                                                                                                                                                and their experience of     considerable psychosocial impact.              with carer depression, carer low QOL,
from page 7                                                                                                                                                     caring for their loved      Clinical experience shows that their           and constantly worrying about the

References                                                                      11. Joint Epilepsy Council of Australia. A Fair Go for People Living with       ones.                       carers can also experience substantial         patient. This suggests an important
                                                                                Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). pp.18–19.                                burden. Figure 1 shows the broad and           relationship between carer psychosocial
                                                                                12. Joint Epilepsy Council of Australia. Life with epilepsy report. Canberra:                                                                              wellbeing and burden.
1. Begg, S., Vos, T., Barker, B., Stevenson, C., Stanley, L., & Lopez, A. The                                                                                                               simplified classification of seizures.
                                                                                JECA, 2007
burden of disease & injury in Australia. Canberra: AIHW, 2007.                  13. Joint Epilepsy Council of Australia. A Fair Go for People Living with
2. Forsgren, L., Beghi, E., Oun, A., & Sillanpaa, M. (2005). The epidemiology Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p.26.                                      What is carer burden?                          Aims and rationale of our
of epilepsy in Europe - a systematic review. European Journal of Neurology,     14. Joint Epilepsy Council of Australia. A Fair Go for People Living with                                     Carer burden is “physical,                   study
12(4), 245-253.                                                                 Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p.27.
3. Hauser, W. A., Annegers, J. F., & Rocca, W. A. (1996). Descriptive                                                                                                                       psychological or emotional, social,               Firstly, reflecting on the scarcity of
                                                                                15. Joint Epilepsy Council of Australia. Life with epilepsy report. Canberra:
epidemiology of epilepsy: Contributions of population-based studies from        JECA, 2007                                                                                                  and financial problems that can be             literature, we identified the need to
Rochester, Minnesota. Mayo Clinic Proceedings, 71(6), 576-586.                  16. Joint Epilepsy Council of Australia. A Fair Go for People Living with                                   experienced by family members caring           investigate carer burden in epilepsy
4. Joint Epilepsy Council of Australia. A Fair Go for People Living with        Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p.28.
Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p.23                                                                                                                     for a chronically ill or impaired family       and NES, and the factors associated
                                                                                17. Walker C. Epilepsy in Australian policy: A review of Australian
5. Bell, G.S., Gaitatzis, A., Bell, C.L., Johnson, A.L., & Sander, J.W. Suicide health and social welfare policies which recognise and redress the impact                                   member” (2, p. 398). It is quantitatively      with it. Secondly, the popular generic
in people with epilepsy: How great is the risk? Epilepsia, 50(8), 1933-1942.                                                                                                                                                               instruments such as the CBI are mostly
                                                                                on individuals, their families and the Australian community. Camberwell:                                    measured using questionnaires, such
6. Joint Epilepsy Council of Australia. A Fair Go for People Living with        Epilepsy Foundation of Victoria, 2008.
Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p. 25                                                                                                                    as the Zarit Burden Interview (3), and         developed in the area of dementia and do
                                                                                18. Joint Epilepsy Council of Australia. A Fair Go for People Living with
7. Joint Epilepsy Council of Australia. A Fair Go for People Living with        Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p.22.                                    Caregiver Burden Inventory (CBI)               not adequately address unique seizure-
Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p.20         19. Joint Epilepsy Council of Australia. A Fair Go for People Living with                                                                                  related aspects of caring for people
8. Joint Epilepsy Council of Australia. A Fair Go for People Living with
                                                                                                                                                                                            (4). Carer burden is important to be
                                                                                Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p.17.
Epilepsy: Report to the Parliamentary Friends of Epilepsy.(2009). p.7                                                                                                                       addressed because high burden may              with seizures. We therefore piloted the
                                                                                20. Joint Epilepsy Council of Australia. A Fair Go for People Living with
9. D’Souza WJ, Fryer JL, Quinn SJ, Taylor BV, Ficker DM, O’Brien TJ, et al. Epilepsy: Report to the Parliamentary Friends of Epilepsy.( 2009). p.14.                                        impact the carers’ ability to look after       development of the Burden of Seizure
The Tasmanian Epilepsy Register – a community-based cohort. Background          21. Joint Epilepsy Council of Australia. A Fair Go for People Living with                                   the patients, resulting in poor outcomes       Scale (BoSS), a novel seizure-specific
and methodology for patient recruitment form the Australian national            Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p.15
prescription database. Neuroepidemiology 2007;29(3-4):255-263.                  22. Joint Epilepsy Council of Australia. A Fair Go for People Living with                                   among carers and patients. Therefore,          burden questionnaire.
10. Martiniuk, A., Anderson, C., Somerville, E., Hackett, M., Glozier, N., &    Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p.26.                                    investigation of factors associated with
Bleasel, A. Designing research in epilepsy to ensure policy change: Sydney      23. Joint Epilepsy Council of Australia. A Fair Go for People Living with
epilepsy incidence study to measure illness consequences (SEISMIC).                                                                                                                         burden is substantial to plan for strategies
                                                                                Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p.15.
Conference paper, 28th International Epilepsy Congress, Budapest, 2009.                                                                                                                     aimed at alleviating carer burden.
10    THE EPILEPSY REPORT DECEMBER 2009                                                                                                                                                                                                THE EPILEPSY REPORT DECEMBER 2009         11
Methodology
                                                                                                                                                                                                                                           Australian Pregnancy
                                              2. Carer burden                                          multivariate analysis of those factors for       are often considered to have severe cases of epilepsy or NES.
  Thirty patients admitted to an adult        The mean CBI score was low at 18 out                     CBI and BoSS scores (Table 1) revealed           The BoSS needs to undergo further psychometrics testing in a
                                              of 100, and the scores were concentrated                 that patient and carer psychosocial              larger sample.

                                                                                                                                                                                                                                            Register celebrates
Video EEG Monitoring Unit of a
Melbourne tertiary hospital, and their        on the low side. The BoSS registered a                   wellbeing (carer anxiety and depression,
corresponding carers participated in our      higher score, with a mean of 31.5 out of                 patient anxiety and low QOL) were                Final comments
study. The patients either had intractable
epilepsy or NES (including PNES and
                                              80, and a more even score distribution
                                              (Figure 2). This showed that the BoSS
                                              was better able to pick up burden than
                                                                                                       more important predictors of burden
                                                                                                       than other investigated clinical and
                                                                                                       sociodemographic factors such as
                                                                                                                                                          Our study addressed the gap in the carer burden literature
                                                                                                                                                        in adult epilepsy and NES patients. This was the first study to
                                                                                                                                                        investigate burden in the VEM unit in Australia. We have seen
                                                                                                                                                                                                                                                 10 years
other NES), thus required diagnostic
clarification or pre-surgical evaluation.     the CBI, supporting that the BoSS                        seizure type. This is an important               that the BoSS, as a seizure-specific carer burden questionnaire,
There were two parts of this study: (a)       is sensitive to identify burden in the                   finding and is consistent with the results       has captured the seizure-related burden otherwise missed by
the development of the BoSS, and (b) the      seizure disorder setting.                                from previous epilepsy studies, where            the CBI. It showed good preliminary validity and reliability,
investigation of burden level and factors        Based on the CBI and BoSS scores,                     carers who were constantly worried               and is a promising screening tool for carer burden to be used
associated with it.                           there were mild-moderate levels of carer                 about the patient and had low QOL were           by researchers and clinicians.
                                              burden. Similar burden levels were                       more likely to have high burden (5). In            We found that carer burden levels were mild to moderate,
a) Development of the BoSS
                                              found in the two carer burden studies                    a post-surgical patients study (7), carers       and were most significantly affected by the level of carer and
  We designed the questionnaire items
                                              addressed previously (5, 6). However,                    who were depressed were also likely to           patient psychosocial well-being. An important implication of
from the literature and interviews with
                                              these studies measured burden using                      have high burden.                                this finding is that it would be necessary to identify carers and
seven clinicians and/or researchers in the
                                              different instruments and in different                      Limitations to this study would               patients who are at risk – those who are depressed or anxious,
epilepsy field. The BoSS had 20 items
                                              patient populations.                                     include the small sample size, and that          and have low QOL. Future interventions are needed to reduce
addressing seizure-specific issues for
                                                 Firstly, we did univariate analyses                   the findings could not necessarily be            burden and to ensure good outcomes among both carers and
carers, such as “I am concerned about                                                                                                                                                                                                                             Janet Graham and Alison Hitchcock with baby Ruby.
                                              to determine factors significantly                       generalised to other epilepsy setting.           patients.

                                                                                                                                                                                                                                             T
when and where he/she will have the next                                                                                                                                                                                                         he Australian Pregnancy Register for Women on
                                              associated with carer burden. Further                    This is because the VEM unit patients
seizure”, “I feel that I may eventually be                                                                                                                                                                                                       Antiepileptic Medications with Epilepsy and Allied
                                                                                                                                                        * Sociodemographic and clinical questionnaires, Hospital Anxiety
unable to cope emotionally with caring                                                                                                                  and Depression questionnaire (8), Quality of Life in Epilepsy-89 (9),              Conditions recently celebrated our 10th Anniversary and we
                                                                                                      Seizures
for him/her”, and “I have to drive him/her                                                                                                              Neuropsychiatry Unit Cognitive assessment tool (10).                               excited about the next 10 years ahead.
around”. Carers’ answers may range from                                                                                                                 ** The relationship between carer burden, diagnosis and seizure type were
                                                                                                                                                        not properly investigated in the literature. We hypothesised that carers of          This Pregnancy Register was first started in 1999 and prior
never (score 0) to nearly always (score 4).                                                                                                             patients with convulsions would have higher burden than carers of those with       to this there was no information available to mothers about the
                                                                              ES                                                 NES                    non-convulsive seizures.                                                           effects of their medication or seizures (in the case of epilepsy)
b) Data collection from patients and                                                                                                                    *** Studies showed that people with seizures are associated with anxiety and
carers                                                                                                                                                  depression, a low QOL, and affected neurocognitive function.
                                                                                                                                                                                                                                           on their developing baby or breast feeding. Many women were
   Carer burden was measured using the                                                                                                                                                                                                     advised by their doctors not to have children and in some
CBI and the BoSS. Various information               Partial              Generalised          Unclassified
                                                                                                                 Psychological        Physiological
                                                                                                                                                        Acknowledgements:                                                                  instances were told to terminate their pregnancies because of
                                                                                                                 Origin: PNES       Origin: other NES
was gathered using questionnaires*,                                                                                                                        My supervisors Dr Dennis Velakoulis, Dr Raju Yerra, and Prof                    the lack of information on the medications they were taking.
                                              Figure 1.                                                                                                 Terence O’Brien (Royal Melbourne Hospital), Ms Alexandra Gorelik                     Its one thing to have epilepsy and to cope with the stigma of
including sociodemographic factors            Broad classification of epileptic and nonepileptic seizures                                               (Clinical Epidemiology and Health Service Evaluation Unit), Mr Jaya
(e.g. age, gender), clinical factors**                                                                                                                  Pinikanaha (Epilepsy Foundation Victoria), Mr Slave Petrovski, Mr                  this condition but being a pregnant woman raises the stakes,
(e.g. seizure frequency, seizure type of                                                                                                                Yves Choi, all Neuropsychiatry and Neurology Departments staff, and                the pressures and stresses of an unknown outcome are great.
                                                                                                                                                        all patients and carers at the VEM unit.                                             Our Register has evolved over the last 10 years and has now
convulsive or non-convulsive seizure,
diagnosis of epilepsy, NES, or dual                                                                                                                     For further information, e-mail Jessica Purnama on                                 1500 women registered, we are regularly doing data analysis
                                                                                                                                                        jessica@ugrad.unimelb.edu.au
pathology (both existing together)),                                                                                                                                                                                                       and have published our findings each year and over the course
patient and carer psychosocial factors***                                                                                                                                                                                                  have seen prescribing patterns change dramatically and a trend
(e.g. anxiety, depression, QOL), patient                                                                                                                References                                                                         for fewer babies with abnormalities born to Australian women
neurocognitive functioning***, and                                                                                                                      1. Schuele SU, Lüders HO. Intractable epilepsy: management and                     being treated for epilepsy during their pregnancy.
other caregiving-related factors (duration                                                                                                              therapeutic alternatives. Lancet Neurology. [Review]. 2008;7:514-24.                 Women with epilepsy now have information, support and
                                                                                                                                                        2. Chou KR. Caregiver burden: a concept analysis. Journal of Pediatric             guidance to help them plan for a successful pregnancy.
of caring, relationship with patient –                                                                                                                  Nursing. 2000 Dec;15(6):398-407.
parent, partner, etc.).                                                                                                                                 3. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly:          In the past 10 years there has been sadness with the loss of
                                                                                                                                                        correlates of feelings of burden. Gerontologist. 1980;20(6):649-55.                pregnancies and in some cases Mums, but overwhelmingly we
What did we find?                                                                                                                                       4. Novak M, Guest C. Application of a multidimensional caregiver burden            have had the privilege to share in the great news of the safe
                                                                                                                                                        inventory. Gerontologist. 1989;29(6):798-803.
1. Reliability and validity of the BoSS                                                                                                                 5. Westphal-Guitti AC, Alonso NB, Migliorini RC, da Silva TI, Azevedo              arrival of a much anticipated healthy baby.
The BoSS was easy to complete and                               Figure 2.                                                                               AM, Caboclo LO, et al. Quality of life and burden in caregivers of patients          We would greatly appreciate all pregnant women to enroll
                                                                Distribution of CBI and BoSS scores                                                     with epilepsy. Journal of Neuroscience Nursing. 2007 Dec;39(6):354-60.
comprehensive. To ensure the reliability                                                                                                                                                                                                   with us. This can be done by calling the register directly on
                                                                                                                                                        6. Lane AB, Dede DE, Chandra SP, Gilmore R. Continued caregiver
                                              Table 1.                                                                                                                                                                                     1800 069 722.
of the BoSS, it underwent a number                                                                                                                      burden: seizure-free may not equal burden-free. Journal of Epilepsy.
                                              Multivariate stepwise regression analyses of factors associated with CBI and BoSS scores
of validity and reliability testing. Face                                                                                                               1998;11(6):361-7.                                                                    Enrollment is easy, no appointments or visits are required,
                                                                                                                 B        SE B     R2        p value    7. Kendall S, Thompson D, Couldridge L. The information needs of carers
validity was supported, and there was                                                                                                                   of adults diagnosed with epilepsy. Seizure. 2004 Oct;13(7):499-508.
                                                                                                                                                                                                                                           all information for this study is gathered by four telephone
                                               CBI Overall model              Carer depression (HADS)            1.56     0.67     0.6758    0.0100
a good concurrent validity (Spearman’s                                                                                                                  8. Bjelland I, Dahl AA, Haug TT, Neckelmann D. The validity of the                 interviews: on enrolment (15mins); 7 months gestation (5
                                               Adjusted R 2 = 0.8316          Patient depression (HADS)          1.85     0.53     0.7840    0.0311
r with the CBI = 0.88, p<0.001).                                                                                                                        Hospital Anxiety and Depression Scale. An updated literature review. Journal       mins); 4-8 weeks post-delivery (5–10 mins); and 1 year post
                                               F = 36.68                      Carer anxiety (HADS)               1.68     0.59     0.8462    0.0022     of Psychosomatic Research. 2002 Feb;52(2):69-77.
Reliability was supported by internal                                                                                                                   9. Devinsky O, Vickrey BG, Cramer J, Perrine K, Hermann B, Meador K,
                                                                                                                                                                                                                                           delivery (5 mins). During the interviews, women have the
                                               p < 0.0001
consistency (Cronbach’s alpha 0.92).                                                                                                                    et al. Development of the quality of life in epilepsy inventory. Epilepsia. 1995   opportunity to ask any question relevant to the pregnancy and
                                               BoSS Overall Model             Carer anxiety (HADS)               1.70     0.52     0.4909    0.0001     Nov;36(11):1089-104.
The BoSS had a low missing response                                                                                                                                                                                                        birth, their epilepsy and their antiepileptic medication.
                                               Adjusted R = 0.5027
                                                            2
                                                                              Patient QOL (QOLIE-89)             -0.22    0.14     0.5459    0.1258     10. Walterfang M, Siu R, Velakoulis D. The NUCOG: validity and reliability
rate, suggesting that the items on the                                                                                                                  of a brief cognitive screening tool in neuropsychiatric patients. Australian                                                    Allison Hitchcock
                                               F = 12.62
BoSS were more relevant to the carers                                                                                                                   and New Zealand Journal of Psychiatry 2006 Nov-Dec;40(11-12):995-1002.
                                                                                                                                                                                                                                                                                         www.apr.org.au
                                               p = 0.0003
compared to the CBI.
12   THE EPILEPSY REPORT DECEMBER 2009                                                                                                                                                                                                                        THE EPILEPSY REPORT DECEMBER 2009               13
                                                            Parliamentary
                                                          Friends of Epilepsy
                                                               Breakfast
                                                             October 2009                                                                                                                               Wally Lewis and The Hon Bill Shorten MP




                                                                                                                                                                                                                                                             Deborah Chan, Jannsen-Cilag




Convenor Jill Hall MP and The Hon Laurie Ferguson MP




                                                                                                                                                                                        The Hon Arch Bevis MP, Wally Lewis and Chris Trevor, MP




                                                                                                                                                                                                                                                              Allison Johnston, NSW with Wally Lewis




                                                              Jacqui and Wally Lewis with Clare Thorne and Kay Elphinstone, Epilepsy Tasmania




                             Kirrily Flanagan, Victoria



                                                                                                                                                                       Wally and Jacqui Lewis with Helen Whitehead, Epilepsy Queensland (centre)



                                                                             Helen Portlock, Tania Funnell and Jacinta Cummins, Epilepsy ACT
                                                                                                                                                                                                                                                                    Wally Lewis and Chris Trevor, MP




                      Convenor Sen Gary Humphries                                                               Wally addressing the meeting.   Convenors Jill Hall MP, Mark Coulton MP, and Damian Hale MP (second from right) with Wally Lewis,             Damian Hale MP welcoming Wally Lewis
                                                                                                                                                                                        Graeme Shears, Chair, JECA and The Hon Bill Shorten MP

  14    THE EPILEPSY REPORT DECEMBER 2009                                                                                                                                                                                                           THE EPILEPSY REPORT DECEMBER 2009            15
Excellence in
Epilepsy Journalism
Awards — 2009                                                                                       Art
  T   he International Bureau of Epilepsy and    Correspondent for The Times, UK.
                                                                                                    helps
                                                                                                    lift the
      UCB recently announced the winners of        Television journalist and producer Miguel
the Excellence in Epilepsy Journalism Award      Ángel Tobías was judged winner in the
2009.                                            broadcast category for his program, Hora de
   The award, an initiative of the               Salud: Epilepsia (Health Hour: Epilepsy),
International Bureau for Epilepsy (IBE) and
biopharmaceutical company UCB, aims to
increase awareness, improve understanding,
                                                 broadcast on Spain’s Canal 9 TV.
                                                   Member of the judging panel, Joachim
                                                 Mueller-Jung, writer and journalist for
                                                                                                    veil on
                                                                                                    epilepsy
and encourage accurate reporting of epilepsy     Frankfurter Allgemeine Zeitung in Germany
by inviting journalists to submit stimulating,   said, “The judges felt this program had
informed and compelling stories about            everything. It takes epilepsy to a broader
knowledge, data and real life experiences of     audience in a clear and comprehensive way
people with epilepsy around the world.           with educational insights into epilepsy. If        It’s misunderstood
   Award judge Susanne Lund, Immediate           programs like this were broadcast around the       but epilepsy’s
Past President of the IBE, commented,            world, it would make a meaningful impact.”         mysterious link with
“We received high calibre entries from 17                                                           art is helping experts
countries around the world covering a range      Highly Commended                                   to shine light
of topics including facts about epilepsy, new                              Australian journalist    on the condition,
developments in research, practical advice                                 Julia Medew              writes Julia Medew.
on travel as well as the stigma and challenges                             received a highly
people living with epilepsy face at home, in                               commended award
the workplace and in the community.                                        for her article Art
   “These entries truly demonstrate how                                    Helps Lift the Veil on
                                                                                                      M
                                                                                                             egan O’Keefe doesn’t like       five each week, plus other partial           standard part of the first-aid courses   produced by people with epilepsy.       participating in the study were
journalists can help to combat the fear and                                Epilepsy, published in
                                                                                                             looking at her self-portrait    seizures as well.                            people do,’’ she says.                      A lot of the artists used vibrant    excited to be part of something that
ignorance about epilepsy and improve the                                   The Age newspaper.       much. She took the photograph of            The seizures were often violent.             As a result of the psychological      tertiary colours, which might show      might help others understand them.
lives for those living with the condition.”                                Her article, which       herself when she was experiencing        Ms O’Keefe, under attack from                damage she suffered through these        the visual pathway in the brain            ‘‘A lot of these artists want to
   An independent seven member judging                                     reached more than        symptoms of epilepsy as a teenager,      within, would unconsciously fight            experiences, Ms O’Keefe became           being hyperstimulated,he said.          be better understood. There can
panel, consisting of media experts and people                              one million readers,     which no one recognised as a medical     anyone who tried to pin her down. On         a recluse and fearful of going out,      There are also a lot of facial and      be two impacts of epilepsy, firstly
                                                                                                    problem or understood.                   one occasion, she grabbed someone’s          especially alone. She changed from       spatial distortions in the artwork,     the symptoms and then the public
with experience of epilepsy, was tasked                                    told the story of
                                                                                                       ‘‘I was 19 and I was not happy…       ankle on the ground and would not let        the bright, bubbly girl she used to      which potentially reflects the visual   reaction. That is, how it impacts on
with identifying responsible, informed,          a young woman’s participation in a study           A lot of people were saying I was        go. During a different type of seizure,      be to someone who was anxious and        illusions some people with epilepsy     someone’s job, relationships, ability
original and stimulating stories on epilepsy.    examining the influence of epilepsy on artistic    vague. No one ever said it to my         she once walked from her house and           depressed.                               experience, he said.                    to travel, and so on. Often these
The judges selected winners and a highly         expression and is reprinted here, with Julia’s     face but I read in school reports that   woke from a semiconscious state in              Art helped Ms O’Keefe cope with          Many of the artworks also depicted   can be more debilitating,’’ he says,
commended entrant in two categories – print/     permission.                                        I was a daydreamer and not paying        the middle of a four-lane freeway.           some of these problems and now,          feelings associated with seizures,      pointing out that having epilepsy will
                                                   In the broadcast category, the judges highly     attention,’’ she explains.                  Ms O’Keefe underwent various              with her epilepsy well controlled by     such as being pulled into something     not always make you an artist, and
online and broadcast.
                                                                                                       ‘‘I now believe I was having absent   tests to determine the cause of her          medication, she is one of 94 people      or falling.                             vice versa.
                                                 commended Floriane Closuit for her thought-
                                                                                                    seizures, which is basically staring     seizures, but these were inconclusive.       taking part in a Melbourne University                                               Epilepsy Foundation of Victoria
Winners                                          provoking film – Par Surprise(s) (By Surprise)
                                                                                                                                                                                                                                      Mr Chambliss has also observed
                                                                                                    off into space. It’s like someone has    At 35, she was finally diagnosed as          study that is examining the influence    hanges in people’s artwork after they   chief executive Graeme Shears, who
  The winner of the print/online category is     and its powerful ability to humanise epilepsy.     put you on pause.’’                      having epilepsy — a disorder of brain        of epilepsy on artistic expression.                                              is helping fund the research, said he
                                                                                                                                                                                                                                   have been medicated, a clear example
Aliyah Baruchin for her article Epilepsy in                                                            The subtle signs of epilepsy made     function that affects about 3 per cent          Researcher Jim Chambliss — a          of the condition’s impact.              hoped it would raise awareness of the
the African-American Community: Access           Special Mention                                    Ms O’Keefe withdraw socially and         of Australians.                              US lawyer who was surprised by a            While most people don’t know         condition and help with diagnosis.
Education and Advocacy, published in               A special mention was awarded to Majlinda        feel misunderstood.                         Throughout her journey, Ms                sudden creative streak after being       the part of the brain or focal point       ‘‘It’s a very difficult condition to
EpilepsyUSA, Issue 4, 2008.                      Aliu for her compelling broadcast entry The           She was doing well at school but      O’Keefe has experienced a lot of             diagnosed with epilepsy in his 30s       that produces their seizures, Mr        diagnose, so anything that can help
                                                                                                    people were making observations          stigma. People would often ask her           — has reviewed more than 2000            Chambliss hopes to isolate this for     that process is fantastic . . . It’s also a
  “A well-written, easy to read article          Treatment of Epilepsy in Kosovo.
                                                                                                    about her behind her back.               what drugs she was using or if she           artworks to see how the condition        some of his subjects. This would        completely different way of engaging
highlighting the challenges that are often                                                             By age 27, she was having tonic-      was drunk when seizures came on.             has an impact on art and how it could    help them understand their condition    people in discussion about epilepsy,’’
faced by the African-American community          For more information on the award or to            clonic seizures — severe seizures,       One shop owner once told her to get          help diagnosis.                          and the way it has an impact on their   he said.
when trying to gain access to appropriate        download a 2010 entry form please visit:           which usually involves someone           out of their store because she might            It has long been known that           behaviour. It may also lead to better
epilepsy care – a topic that rarely gets the     http://www.ibe-epilepsy.org/activities/            falling to the ground and convulsing.    repel customers.                             the production of artwork is a           treatment.
                                                                                                    Over the next five years, these events      ‘‘Seizures are so misunderstood, I        complex neurological process,               While everyone seems to
coverage it deserves,” said award judge Dr       excellence-in-journalism-award                                                                                                                                                                                                        Reprinted with permission
                                                                                                    became more frequent, to the point       can’t believe people still don’t know        but Mr Chambliss has discovered          experience epilepsy in a different
Mark Porter, GP, Broadcaster and Medical                                                            where she was having up to four or       basic seizure first aid. It is still not a   commonalities in the artwork
                                                                                                                                                                                                                                                                                               Photo: Joe Armao
                                                                                                                                                                                                                                   way, Mr Chambliss said the artists

16   THE EPILEPSY REPORT DECEMBER 2009                                                                                                                                                                                                                     THE EPILEPSY REPORT DECEMBER 2009                    17
     Epilepsy Australia salutes our supporters –heroes, every one!
                                                                                                                                                     A    . G. Coombs Pty Ltd is a major
                                                                                                                                                          provider of building services to
                                                                                                                                                   commercial and industrial buildings
                                                                                                                                                   and the construction industry and prides
                                                                                                                                                   itself in whole of life building services.
                                                                                                                                                      But what it is also building is an
                                                                                                                                                   appreciation of what it is to be a good
                                                                                                                                                   corporate citizen among its employees.
                                                                                                                                                      Each year the company awards
                                                                                                                                                   the Allan Coombs Training Award,
                                                                                                                                                   named after the company’s founder, Mr
                                                                                                                                                   Allan George Coombs in recognition
                                                                                                                                                   of the merit of application, effort and
                                                                                                                                                   dedication shown by apprentices across
                                                                                                                                                   all facets of trades within the A. G.
                                                                                                                                                   Coombs Group of Companies. Part of
                                                                                                                                                   the criteria of this award is the donation


  S   oaring some 250 metres above the
      city, the Sydney Tower is one of
                                                         Team Wilso (left to right) Darren Mprrison, Leigh Wilson, Matt Crowe and Craig Breadman   of $2500 to the winner’s preferred
                                                                                                                                                   charity.                                                A sunny winter’s day in Canberra
                                                                                                                                                                                                             saw the 3rd Annual Bed Race
                                                                                                                                                                                                        for Epilepsy ACT take place at the
                                                                                                                                                                                                                                                                 “This is a wonderful community event
                                                                                                                                                                                                                                                               that raises awareness of epilepsy and the
                                                                                                                                                      Mr Ben O’Brien, the proud recipient                                                                      work of Epilepsy ACT,’ she added.
Sydney’s most prominent landmarks                                                                                                                  of the award for 2008, nominated                     Australian Catholic University.                            With members of the Brumbies
with breath-taking 360-degree views                                                                                                                Epilepsy Australia as the beneficiary of               Amid a carnival atmosphere that                      Rugby Union team special guests on
of the city and harbour. For most                                                                                                                  this donation. Having a family friend                included face painting, balloons and                   the day, ACU students, staff and family
people, getting to the top takes about                                                                                                             living with epilepsy, Ben has also had               games for children, teams of nursing                   members ensured the day was a great
40 seconds in a small, fast lift. But                                                                                                              a friend die tragically at the age of 19             students raced hospital beds around the                success.
once a year, the Sydney Tower Run-Up                                                                                                               which was why he had no hesitation                   University’s car park.                                   Organised by Danielle Fleeton,
invites challengers to race to the top                                                                                                             in donating the funds to help epilepsy                 Representing Epilepsy ACT,                           Marketing and Communications Officer,
by climbing the 1504 stairs, supporting                                                                                                            research.                                            committee member Helen Portlock said                   Australian Catholic University, this is
their favourite charity along the way.                                                                                                                A. G. Coombs Group is a value’s                   “It was heaps of fun with the races hotly              the third year the Bed Race has been
   This year Team Wilso (pictured                                                                                                                  based organisation and its active                    contested. I am not sure who won, they                 held to support Epilepsy ACT. Funds
above) from Wilson Management                                                                                                                      involvement in the community is a proud              were having too much fun.                              raised on the day totalled $270.
Pty Ltd (www.wilsonmanagement.                                                                                                                     part of its heritage.
com) enthusiastically led by Leigh
Wilson, took the challenge for Epilepsy
Australia.
   They powered to the top with Matt
Crowe leading the way in a time of 11.51
mins, closely followed by Leigh (12.58),
Craig Breadman (13.50) and Darren
Morrison (20.19), even managing a smile
at the end!
   While their physical feats leave many
of us gasping, their fundraising effort
was equally superhuman, raising in
excess of $7000 for Epilepsy Australia.
   “Having been diagnosed myself 12
months ago with myoclonic epilepsy,          T   he Sun Herald City2Surf is the world’s largest timed fun run that takes place in
                                                 Sydney in August each year attracting some 70,000 participants on the 14km
                                           route from Hyde Park in Sydney’s CBD to world famous Bondi Beach.
I was surprised to learn how common
epilepsy is yet it doesn’t enjoy a high      Fun run it may be for the majority of competitors, but for others it is taken quite
profile compared to other conditions”,     seriously as they seek to challenge themselves and improve on previous times.
said Leigh Wilson. “The information          Greg Coy is one such competitor who this year completed the gruelling course in
obtained from Epilepsy Australia helped    59.19 mins, just a little over 18 mins behind the winner. And every step of the way,
us, and this event was a way to raise      Greg was raising funds for Epilepsy Australia totalling in excess of $400.
awareness of epilepsy as well as raise       It is events like these that many people with epilepsy are just not able to participate
funds for Epilepsy Australia”, he said.    in, so we thank Greg for supporting epilepsy and running for those who can’t.
                                                                                                                                                      from left to right: Freya Dahl, Kim Hesline, Ben O’Brien, David Rouwray (Operations Leader) and Paul Eagling (General manager, Service) A.G. Coombs Pty Ltd.

18   THE EPILEPSY REPORT DECEMBER 2009                                                                                                                                                                                                                    THE EPILEPSY REPORT DECEMBER 2009                   19
                                              In this final article, Robert Mittan pulls together the                                                                                                                            epilepsy is a natural
                                              information discussed in this series ‘Beating Bad                                                                                                                                  condition... like the wind
                                              Seizures’, on how to get the best seizure control                                                                                                                                  it can blow hard some
                                              possible for your child.                                                                                                                                                           days and be calm on
                                                                                                                                                                                                                                 others...

                                              Beating bad seizures
                                              part 3: seizure control
                                                T   his is the final article in a set
                                                    of three designed to help you
                                              take control over seizures. In the first
                                                                                            that person’s seizures are called
                                                                                            refractory. This term refers to seizures
                                                                                            that are resistant to control – in this case
                                              article we learned what epilepsy is, the      resistant to control with antiepileptic
                                              importance of a correct diagnosis, and        medication. There is some disagreement
                                              the key role the parent plays in getting      over how many medications should

Robert J Mittan                               the diagnosis right. In the second article
                                              we learned about treatment strategies.
                                                                                            be tried before seizures are called
                                                                                            refractory. Some epilepsy specialists
                                                                                                                                           medications, herbal supplements, and
                                                                                                                                           certain foods. Work closely with your
                                                                                                                                                                                          supplement, a growth spurt, etc.? Again,
                                                                                                                                                                                          once you have figured out the cause, the
                                                                                                                                                                                                                                          What if you are:
                                                                                                                                                                                                                                          1) consistently maintaining adequate
Seizures and                                  There are four treatment approaches that      think failure on two medications is            doctor and pharmacist and ask lots of          solution is easy.                             blood levels of medication and
Epilepsy Program (S.E.E.)                     can be used to control seizures: lifestyle    enough. In any case, after a certain point     questions.                                        You should also remember that                2) you are following correct lifestyle
www.theseeprogram.com                         changes, medication, surgery, and brain       it appears trying additional medications          Taking blood levels is a critical step      epilepsy is a natural condition. Like the     hygiene, yet your child is still having
                                              stimulation. A fifth approach, genetic        is not very likely to result in success. So    to understanding what is going on with         wind, it can blow hard some days and be       seizures?
For 22 years, Robert J Mittan, PhD, has       therapy, is only in the early experimental    what can be done to control difficult to       your child’s medications and seizures.         calm on others. Seizures frequency can          Then the question becomes is your
been helping people with epilepsy and         stage at this time. In this last article      control seizures? A lot!                                                                      also vary on its own, for reasons we do       child receiving the right medication for
                                                                                                                                           If the child suddenly has an increase
their families. A clinical psychologist, he
                                              about the medical aspects of epilepsy, we        You have already read about the many        in seizures, is it due to a drop in blood      not yet understand.                           his or her type(s) of seizure? Different
is recognized as one of the foremost
epilepsy educators in the world. His work
                                              will put all of this information together     diagnostic and treatment possibilities         levels or is it due to something else             Some children go from periods of           medications work best for different
helping others has earned many awards         to get the best seizure control possible      open to you and your child. In the side        affecting the child? It is hard to tell        relative calm to periods of increased         kinds of seizures. Medication needs to
and his research on epilepsy has resulted     for your child.                               panel, Beating Bad Seizures Check List,        unless you have a blood level drawn and        seizures. Too often I see parents running     be well chosen for your child’s particular
in new and important discoveries.                Our goal – no seizures and no side         I provide a brief list of things to consider   compare those results against what you         to the doctor asking for a treatment          epilepsy. But keep in mind there is both
                                              effects                                       in your effort to get the best seizure         have learned is your child’s therapeutic       change the moment there has been a            science and art to selecting medications.
The S.E.E. program is designed to give                                                      control possible. There are more things                                                       temporary increase in seizures. It is         Sometimes an unexpected medication
                                                                                                                                           range. If the blood level is where it
people with epilepsy, parents of children     Stopping bad seizures                         you can do beyond this list, but it is a                                                      my opinion that the feeling you must          works for a particular child. A certain
                                                                                                                                           should be, then you know that something
with epilepsy and family members the
                                                 A recent study found that 47 percent       good start.                                    else is responsible for the seizures. You      do something every time seizures              amount of trial and error may be
information and skills needed to get the
best chance of becoming seizure free –        of patients became seizure free on the                                                       can start looking at lifestyle issues (sleep   become worse is a leading cause of            required.
without letting treatment become part of      first antiepileptic medication tried.         Maintaining blood levels                       deprivation, fatigue, hypoglycemia,            overmedication and unnecessary
the problem.                                  Another 11 percent became seizure free          The very first place to start is to ask,     etc.), other medications or supplements        switching from one medication to              The importance of a correct
                                              after changing to another appropriate         “Are we successfully maintaining blood         that may have lowered your child’s             another. I know it can be hard, but have      diagnosis
Dr Mittan has presented this program to       medication. Only 4 percent became             levels of the medication in our child’s        seizure threshold, another illness that        a little patience. If this is just a slight      The place to begin in selecting a
over 30,000 people with epilepsy and          seizure free after trying a third             therapeutic range each and every day?”                                                        increase in seizures, find out if the
                                                                                                                                           may have lowered seizure threshold, or                                                       medication is to be sure the diagnosis
their families in Australia, Canada, New                                                                                                                                                  winds will calm again. You don’t want
                                              medication after the first two failed.        Research finds the most common cause           activities that might encourage seizures                                                     is correct. You have already learned
Zealand and the USA.
                                              The take home message of this study is        for unnecessary seizures is failure to         (for example, watching TV all day              to abandon a medication that works            how difficult diagnosis can be. An
This article was published in Exceptional     that the doctor can tell relatively early     maintain proper blood levels. Levels           instead of getting adequate exercise and       pretty well most of the time for another      accurate diagnosis is necessary for
Parent magazine, Volume 35, Issue 8,          which patients are likely to have difficult   must be maintained throughout every            maintaining physical health.) Paying           that may or may not be helpful. You           selecting an appropriate treatment. If
pages 40-46,August 2005 www.eparent.          to control seizures. Nearly 40 percent        day, of every week, of every month,            attention to all these possibilities will      also don’t want to subject your child to      there is any question about your child’s
com and is reprinted with permission.         of patients in the study were in that         of every year. Yet so many things              help you identify the potential culprit.       continual increases in dosage that lead       diagnosis, it needs to be answered.
                                              category.                                     can interfere with this effort even if         From there it is easy to make the              to toxic levels of medication. However,       Intensive monitoring may be in order.
                                                 When a patient has failed to gain          you are paying close attention. Check          necessary changes.                             use your judgment. If there is a serious      It is the most reliable way to establish
                                              seizure control after two or three            constantly for everything that could              If the blood level is lower than it         increase in seizures or if seizures are       an accurate diagnosis. Sometimes
                                              trials of well-chosen and well-               cause the blood levels to go out of            should be, what was the cause? Missed          suddenly prolonged, then seek help right      videotaping your child’s seizures will
                                              managed medications and possibly one          range, including forgetting doses, taking      doses, addition of another medication or       away.                                         prove to be enough. My experience
                                              appropriate combination of medications,       other medications, over the counter

  20    THE EPILEPSY REPORT DECEMBER 2009                                                                                                                                                                                           THE EPILEPSY REPORT DECEMBER 2009          21
with thousands of people who attended          this problem. This kind of scan usually      on the VNS generally continue to take         Learn everything you can!                       Conclusion                                        Beating Bad Seizures
Seizure & Epilepsy Education (S.E.E.)          needs to be done by a group of experts       antiepileptic medication.                        This is my other most important                 I hope this series of three articles
programs is that after going through           (neurologists, radiologists) familiar          However, the stimulator may allow           suggestion for beating bad seizures. I          has provided you with some practical
                                                                                                                                                                                                                                                 Check List
                                                                                                                                                                                                                                                    Things to check on if your child
training in seizure types and seizure          with the problem of mesial temporal          reduction of medications to just one at       would guess that as a result of reading         ideas for improving your child’s seizure                      is still having seizures
observation, about 40% discover they           sclerosis and what it looks like on          a more moderate dose. In a child who          this series you already have some new           control. I expect you found you were not
have an entirely different kind of             medical imaging. Special software and        was previously taking more than one                                                                                                             ➡ Knowledge is power – and seizure control.
                                                                                                                                          ideas of things you could do to help your       at the end of your rope, but just at the
                                                                                                                                                                                                                                            Have you learned everything you can about your
epilepsy than they thought they had.           procedures may be required to detect         medication, the resulting improvement         child. I was able to cover only the basics.     end of your knowledge. There is much              child’s epilepsy and its treatment?
  Would a 40% error rate make a                this problem. Epilepsy specialty centres     in quality of life could be as significant    I did not have time to discuss add-on           more you can learn to help your child.
difference in treatment success? After         are usually the best place to go for this    as the improved seizure control.              therapies like psychological techniques            Visit the growing number of websites           ➡ Are you maintaining proper blood levels
                                                                                                                                                                                                                                            every day? Failure to do so is the leading cause
S.E.E. programs I get letters and emails       imaging. If mesial temporal sclerosis                                                      for seizure control and methods to              that provide credible information.                of unnecessary seizures.
from parents and patients who say they         is found as the cause of the epilepsy,       See a specialist!                             abort seizures. There is much more              There are good books that give honest
have much improved seizures or they are        you can predict that medications are            This is probably my most important         information available. The more you             information.                                      ➡ Is the medication(s) at the correct dosage
seizure free after getting their diagnosis     not likely to work and surgery is the                                                                                                                                                        level for your child? (either too low or too high
                                                                                            suggestion: If you are not having             learn, the more you will be in a position          Attend epilepsy educations programs            can make seizures more likely)
right and getting on the right medication.     treatment of choice.                         treatment success despite good effort,        to help your child and to succeed in            that provide in-depth information about
                                                                                            see a specialist.                             conquering seizures. As I said at the           taking control of seizures and taking             ➡ Side effects can be as important as seizures.
Does your child have an                                                                                                                                                                                                                     Are you keeping the doctor informed of any
                                               Is your child a surgical                        Epilepsy specialists are called            beginning, knowledge is power – and             your life back. Check with your local
                                                                                                                                                                                                                                            problems? See “diary”.
epilepsy syndrome?                             candidate?                                   “epileptologists.” Like any other branch      seizure control.                                Epilepsy Australia affiliate. They run
   Certain syndromes have difficult to             Partial seizures have a place in the     of medicine, there are doctors who have          Finally, keep on trying. It used to          educational programs throughout the               ➡ Are blood levels of antiepileptic medications
control seizures. These include Infantile                                                                                                                                                                                                   being measured to learn the concentration that
                                               brain where they start. Most partial         special training and interest in treating     be thought if a person’s seizures were          year.
                                                                                                                                                                                                                                            works best for your child and to see if a change
Spasms (West syndrome), Lennox-                seizures start in the temporal lobe. This    difficult cases of epilepsy. Epilepsy is      refractory, his or her seizures would              Never give up. The goal is no seizures         in seizure frequency (worse or better) is due to a
Gastaut, Sturge-Weber, Rasmussen’s             is why temporal lobectomies are the          not one disorder, but many kinds of           never come under control. Recent                and no side effects. I have had the               change in that concentration?
syndrome, Severe Myoclonic Epilepsy            most common surgical procedure for           disorders. Thousands of different kinds       research has found that a significant           pleasure of seeing hundreds reach that
                                                                                                                                                                                                                                            ➡ Are your child’s seizures correctly
of Infancy, and other rare but serious         treating refractory seizures. This type of   of seizures have been reported, scores of     percentage of refractory patients               goal armed with nothing more than good            diagnosed? (Different medications tend to work
epilepsy syndromes. Medications are            surgery has been done for decades and        different syndromes probably exist – and      eventually achieve seizure control. It          information and determination.                    best for different kinds of seizures, and not all
still primarily selected based upon the        epilepsy centres have a lot of experience    many are very obscure. The availability       may take some years, but it can happen.            Become one of those success stories            seizure-like events are due to epilepsy.)
type(s) of seizures the child is having.       with it. Sometimes the seizure focus is      of medications has doubled, brain scan        The key to success is to never give             for your child and for yourself. You can          ➡ Is your child on the correct medication for his
However, doctors have also developed           located elsewhere in the brain. It may be    technology has mushroomed, genetic            up on seizure control for your child.           make a difference.                                or her type(s) of seizure or epilepsy syndrome?
experience over time regarding which           possible to remove the focus through a       contributions are being discovered,           Determination and perseverance are
medications are most likely to work best                                                                                                                                                                                                    ➡ Is your child avoiding seizure triggers
                                               procedure called a “cortical resection.”     surgical techniques are evolving, and         the two most powerful therapeutic tools
                                                                                                                                                                                                                                            (missed doses, sleep deprivation, fever, etc.)?
for these syndromes.                              If the seizure focus is in a part of      brain stimulation is a new reality. This      known to man!
   It used to be thought that severe           the brain that cannot be removed,            is too much for a family physician or                                                                                                           ➡ Is your child living a healthy lifestyle
syndromes meant a lifetime of seizures,                                                                                                                                                                                                     (proper rest, exercise, nutrition, etc.)?
                                               it may be possible to isolate it with        general practice pediatrician to keep up
but recent research suggests that as           another surgical procedure called            with.                                                              Recommended reading                                                          ➡ Is your child taking other medications that
many as a third of patients will have          “multiple subpial transaction” to stop          If yours is a difficult case, you need a                                                                                                     may interact with seizure medicine or lower
become seizure free at some point in           the seizures. Some of the more difficult     specialist who can bring the depth and                                                                                                          seizure threshold?
                                                                                                                                           Seizures & Epilepsy in Childhood:              Being the Other One: Growing Up
their future.                                  syndromes such as Infantile Spasms,          breadth of cutting edge practice to your       A Guide for Parents (3rd Edition)              with a Brother or Sister who has                  ➡ Is your child taking nutritional supplements or
                                               Lennox-Gastaut, Tuberous Sclerosis,          child. You may have to travel. Treatment       John M Freeman, et al, Baltimore, John         special needs                                     herbals that may interact with seizure medication
Does your child have a                         Sturge-Weber syndrome, Rasmussen’s           may be more expensive in the short run.        Hopkins, 2007.                                 Kate Strohm, Boston, Shambala, 2005.              or lower seizure threshold?
difficult to control seizure                   syndrome, and atonic seizures have              However, the specialist can often           This book is a classic reference for parents   The author provides insight, advice,              ➡ Is your child taking recreational drugs that
type?                                          benefited from surgery. For some             figure out the problem, design a               covering everything from new diagnostic        support and resources for both siblings           may interact with seizure medication or lower
                                                                                                                                           techniques, medication, ketogenic diet,        and parents of children with a disability or      seizure threshold?
  Any seizure type can be difficult            “catastrophic” (very severe) epilepsies      successful treatment, and then refer the       surgical treatment, self esteem, school,       chronic illness.
to control, but most often this is the         of childhood, surgery may be the best        whole thing back to your local physician       behaviour and support.                                                                           ➡ Are you keeping a written diary of seizures,
exception rather than the rule. However        solution.                                    to carry out. I may seem like I am                                                            Epilepsy.                                         all medications and supplements, side effects,
a few types of seizures are very often                                                      beginning to shout at this point, but I        Epilepsy: A Patient and Family                 Gill Parkinson and Mike Johnson, London:          seizure triggers, lifestyle changes, etc.? It’s hard
                                                                                                                                           Guide (3rd Edition)                                                                              for you and the doctor to know if you are winning
difficult to control. These include less       Ketogenic diet or VNS?                       cannot emphasize enough how important                                                         Continuum, 2006 (The SEN Series).
                                                                                                                                                                                                                                            or losing – or what is making a difference in
common types of seizures such as                                                            getting specialty care can be. I have          Orrin Devinsky, New York, Demos, 2008.         An excellent, clear and concise handbook,
                                                  If medications have not worked and                                                                                                                                                        seizure frequency – if you don’t keep score!
myoclonic, atonic, and tonic seizures.                                                      seen family after family go from terrible      A comprehensive and easy to read guide         suited to parents and teachers, includes
                                               your child is not a surgical candidate,
                                                                                                                                           by a leading authority. Topics include         medical aspects as well as teaching and           ➡ If your child has partial onset seizures, has he
  Complex partial seizures are the most        there are two additional approaches          seizures to manageable seizures and            medical aspects of epilepsy, education,        learning strategies.                              or she been given an appropriate high resolution
difficult to control of the common types       worth trying. One of these is the            even complete seizure control as a result      mood disorders, and alternative and                                                              MRI to see if a treatable cause can be identified?
of seizures. If your child falls into any of   ketogenic diet described. While the diet     of going to an epilepsy specialist or to an    dietary therapy.                               Epilepsy: The Ultimate Teen Guide:
these categories, you will probably want                                                    epilepsy specialty centre (usually called                                                     It Happened to Me                                 ➡ Does your child have mesial temporal
                                               is difficult, some children have dramatic
                                                                                                                                           Growing Up with Epilepsy: A                                                                      sclerosis?
to make use of more than one therapeutic       results.                                     a “comprehensive epilepsy program.”)                                                          Kathlyn Gay & Seam McGarrahan, Lanham,
                                                                                                                                           Practical Guide for Parents.                   Maryland, Scarecrow Press, 2003.                  ➡ Is your child a candidate for surgery for
approach: lifestyle, medication, surgery,         If the ketogenic diet is either not          Some kids do not respond, no
                                                                                                                                           Lynn Blackburn, New York, Demos, 2003.                                                           epilepsy?
or brain stimulation.                          successful or not an option, the Vagus       matter what is tried. But many more                                                           Advice for teens on how to live a normal
                                                                                                                                           A thoughtful discussion of children with       life by understandg symptoms, treatment
  If your child has Complex Partial            Nerve Stimulator (VNS) might be              do respond. And for the future of your         epilepsy at all stages, emphasising family                                                       ➡ Has your child been evaluated for the
                                                                                                                                                                                          and management strategies. There
Seizures or Partial Seizures Secondarily       the answer. While it seldom succeeds         child, it is better to reach for success       issues, learning, behaviour, social skills,                                                      ketogenic diet or the Vagus Nerve Stimulator?
                                                                                                                                                                                          are stories from teens with epilepsy
Generalized, does he or she have mesial        in making a child seizure free, it has       now rather than later.                         taking medication and more.                    and discussions of whom to tell, plus             ➡ Have you taken your child to an epilepsy
temporal sclerosis? A high resolution          provided significant reductions in                                                                                                         resources including websites.                     specialist (epileptologist) or an epilepsy specialty
MRI scan is usually required to find           seizure frequency for many. Patients                                                                                                                                                         centre?


22   THE EPILEPSY REPORT DECEMBER 2009                                                                                                                                                                                                   THE EPILEPSY REPORT DECEMBER 2009                    23
                 en ces      at t level!
            xperi       ected ree
          E       c o ll      st
  T    he small advert offered part-time
       work: “Door to Door Collecting
for the Epilepsy Foundation of Victoria”.
                                             voices. It took a while to realise it was
                                             just as well some of these people didn’t
                                             come to the door. They weren’t going to
                                                                                              “I’m all right thanks” or “not
                                                                                          interested.” (Hard to smile as you walk
                                                                                          away, thinking about the people that a
                                                                                                                                       few pensioners who had limited funds.
                                                                                                                                       Those days called for positive thinking.
                                                                                                                                          Whenever there was a donation of
                                                                                                                                                                                   counselling and grief work was
                                                                                                                                                                                   interesting. The wheels were in motion.
                                                                                                                                                                                      I left with more handout material from
This sounded OK because I had enjoyed        donate but could give an earful of abuse.    donation would help).                        more than $10 I would ask the person if     the resource room to research. Three
collecting in the past, as a volunteer for   Sadly, sometimes I encountered children         There were more original responses        they knew someone with epilepsy. They       months later I had an interview with
the Heart Foundation and SIDS. “Fancy        under 10, home alone watching TV and         too:                                         often had a story - a family member         both co-ordinators and was struck by
getting paid for collecting,’’ I thought.    telling me Mummy and Daddy were at               “I not the bossa here. I jist mind the   had died in a seizure, or a family was      their enthusiasm and how much they
‘’I’ll give that a try.”                     work.                                        keeds.” Or, “I canna write, sorriee!”        under stress because of a child’s regular   cared about the work. They warned
   New knowledge came fast. Training            I created a system for making sure           “I’ve just got my tax agent with me so    seizures. I was able to say: “Do ring the   me that approvals and funding made
was helpful and interesting, especially      I visited each house in a street, jotting    can’t give today!”                           Epilepsy Foundation helpline.               progress slow but they were keen to
the epilepsy video. Afterwards, I            down house numbers so I knew where              The training tells you that if abused,      From time to time someone would           employ a locum. Three months later I
grabbed some pamphlets and read them         to start again the next day. I began to      you get out smartly. One sunny Sunday        produce a huge jar or container of coins    was invited to become the Friday locum
at home. I was amazed how much there         discreetly jot down things to remember       I copped an earful from a young guy          and notes they wanted to donate to          to be on Intake.
was to learn about this neurological         and follow up. Someone at 8a D Rd            clutching a brown bottle. My parentage       “your” organisation this year. Those           I continued with my door-to-door
condition. The more I read the more I        wanted to go to the memorial service, or     was colourful, my intelligence zilch, and    were the windfalls to pray for especially   collecting until the opportunity arose for
wanted to know, and there was plenty of      Mrs Jones at 220 V St wanted a research      a whole lot more. I left fast.               when the weather was freezing and wet,      three days a week of work in the Client
information on offer.                        envelope. My shorthand code was handy           Another day, a screen door was            or utterly roasting.                        Services team. The budget had come
   The collecting turned out to be fun -     for warnings: 6cS St (DB), indicated         flung open and an elderly man stood            As I handed out a research envelope       through for another staff member. I was
but challenging. Little did I know that it   behaviour like a demented baboon. Or         there stark naked, yelling, “Bustardi,       to a woman who was telling me of her        still reluctant to give up the collecting
would eventually lead me to a fulltime       (AG) meant like an agitated chimp. I         government take my money, bustardi”. I       experience with epilepsy, it occurred to    and continued for some months. I saw
job as a counsellor.                         found that after I had been sworn at or      had been slightly apprehensive about all     me that I was listening to at least three   it as a great way to inform people about                     Gillian Davies
   Of course, going door-to-door I           someone had been particularly nasty, the     the trees blocking any view of the house     such stories a day, and that I really       epilepsy and promote the works of the
encountered the full range of dog            best way was to move on and try to keep      from the street. That was the last time I    would like to do counselling.               Foundation, while bringing in a few
behaviour, from wanting to lick you to       some sense of humour about it.               ignored my gut feelings.                       The next time I came into Camberwell      dollars.                                     to-door collecting. As the slogan on the
death to just wanting you dead. A bit of         Some of the printable comments I            But generally people are generous.        to drop off the collection money, I            Before long, I was relieving the          collectors’ badges says, “Epilepsy is not
dog-awareness was the best defence.          jotted down are:                             Many apologised for giving only $2.          called on Head Office. I explained to the   receptionist who was on leave, then          what you think”. It seems door-to-door
   Though the dogs could range from             “Love to but haven’t got any money on     Others would surprise me by handing          receptionist (a retired school teacher)     travelling to Geelong twice a week to        collecting isn’t always what you’d think
nice to nasty, that was nothing compared     me.” (common one).                           over $20 or more. I became more              that I was a door-to-door collector but     help in the office while the manager was     either.
with the people.                                “Thanks but would like to decline.”       knowledgeable about the tax benefits of      had a degree in counselling. She said       on long service leave.
   It could be frustrating. Sometimes, at    (so refined).                                donations so could answer queries on         they didn’t have any vacancies, but she        Today, I do 5 days a week and the
the door of a house you knew someone            “What do YOU want?”                       that too. Sometimes in the afternoon I       would get someone to speak with me. I       work is varied and interesting. I often
was inside because you had seen a               “Ha, ha you’ve come at the right time.”   could walk for nearly two hours without      presented my CV to Jean, a co-ordinator,    think back to the conversations and
movement behind a curtain or heard           (Is there ever a right time?).               finding anyone at home, other than a         and was told my background in family        the experience gained through door-

24   THE EPILEPSY REPORT DECEMBER 2009                                                                                                                                                                                      THE EPILEPSY REPORT DECEMBER 2009         25
                                                                                                                                            face2face
canine epilepsy
 Epilepsy can occur in animals as well as humans.                                                                                           Robert Cole became the CEO of The Epilepsy Centre in March
 In dogs, epilepsy is often an inherited condition                                                                                          2005 which operates in South Australia and the Northern
 affecting between 0.5% and 5.7% of the general                                                                                             Territory. He has brought the benefit of a long career in the
 dog population.                                                                                                                            not for profit sector to his work with The Epilepsy Centre.
                                                                                                                                            Robert’s focus is to provide leadership, operational and financial
 Here Jo Jeisman passes on the tips she learned                                                                                             management as well as advocacy and representation both
 as she dealt with her pet’s epilepsy.                                                                                                      locally and internationally.




                                                                                                                                            “
  H    aving had two tonic clonic seizures
       n the past, it wasn’t something I
                                              ƒ Having an emergency kit
                                                ready.
                                                                                                                                                  A   s a baby boomer growing up in
                                                                                                                                                      Adelaide, I was exposed to all
                                                                                                                                                that the culture had to offer at the time
                                                                                                                                                                                            a consequence, we, like all other
                                                                                                                                                                                            charities have found it more difficult
was afraid of when my dog began having                                                                                                                                                      to raise funds. In the absence of any
                                              ƒ Using sedatives to                                                                              including concerts, music and the beach.    government funding we must raise
seizures in 2006. Rather I felt it could be     break cluster cycles.                                                                                                                                                                 and reduce stigma in the region. As
managed.                                                                                                                                        I was a young lad when the Beatles came     all our income through fundraising
                                              ƒ The post-ictal                                                                                  to town and was amazed at the public        activities to continue to deliver our     Chair I am committed in ensuring
   Brandy, a Keeshond, had seizures                                                        ƒ The time it takes for potassium                                                                                                          that Australia develops closer
                                                phase that follows seizures, and the                                                            frenzy that they created. And, being a      services free to the community.
from 2006 through to 2009, when she                                                          bromide to reach therapeutic levels                                                                                                      relationships in the region to link East
                                                temporary blindness that can affect                                                             true South Australian, I learned to drink     As a marketer, I am particularly
had to be euthanased at the age of 10 due                                                    in the system, and how long it can                                                                                                       Asia with the Pacific, particularly as
                                                dogs in this phase.                                                                             red wine and I am still drinking it! I      interested in seeing worldwide
to liver damage, most likely as a result of                                                  take to reduce the medication in the                                                                                                     it will host the 8th Asian & Oceanian
the antiepileptic drugs. Brandy had both      ƒ Reestablishing blood sugar levels and                                                           wonder how many bottles have passed         consistency in the epilepsy messages
                                                                                             system when the dog is experiencing                                                                                                      Epilepsy Congress in Melbourne in
tonic-clonic and partial (focal) seizures.      replacing lost calories after a seizure.                                                        by me since then?                           that we communicate. My position
                                                                                             ataxia.                                                                                                                                  October 2010.
Brandy also had cluster seizures, that is,    ƒ Dietary changes that may assist in                                                                 Professionally, I have a commercial      as Chair, International Bureau for
                                                                                           ƒ How dietary changes can affect the                 background, holding a Masters Degree        Epilepsy (IBE) Editors Network is            Finding, serving, satisfying and
a series of seizures over 24– 48 hours.         reducing seizures.
                                                                                             efficacy of medication; potassium                  in Marketing, with broad experience in      helping me achieve that more rapidly.     keeping clients is my prime focus
   In between seizures, Brandy was a          ƒ The two main antiepileptic                                                                                                                                                            and my organisation’s charter.
                                                                                             bromide, for example, is affected by               service industries, retail and property       I have travelled extensively and my
very normal dog, doing normal doggie            drugs (AEDs) are phenobarbital                                                                                                                                                        Our mission is “To improve in all
                                                                                             salt in the diet.                                  development. I am a Fellow of various       two favourite cities are Florence and
things like going for a walk, getting           (Phenobarbitone) and potassium                                                                                                                                                        respects the welfare of people with
into mischief and going to the grooming                                                    ƒ Reducing AEDs slowly so as not to                  institutes including the Australian         Hong Kong. While Florence nurtures
                                                bromide (Epibrom).                                                                                                                                                                    epilepsy and their families in South
salon.                                                                                       bring on a seizure.                                Institute of Company Directors, the         my soul, the vitality of Hong Kong
                                              ƒ Possible side-effects of AEDs.                                                                  Australian Institute of Management,         reminds me of all that is possible: yin   Australia and the Northern Territory”
   As a responsible owner, I wanted to                                                     ƒ The need for a full five-panel
                                              ƒ Regular checks of liver enzymes to                                                              and the Australian Marketing Institute.     and yang. Because of my personal          underpinned with a vision to “Be the
learn more about epileptic seizures and                                                      thyroid test to accurately diagnose
                                                pick up problems.                                                                               As a Director of the Australian Refugee     experiences and friendships made          leading provider of epilepsy services
found some useful sources. The Canine                                                        hypothyroidism in dogs.
                                              ƒ The benefits of regular liver panels                                                            Association, I am able to utilize my        in Hong Kong, I have a particular         and to create a centre of excellence”.
Epilepsy Guardian Angels website                                                           ƒ Thyroid activity is lowest during the                                                                                                       My personal goal is to reduce
                                                to monitor liver function where liver                                                           skills in assisting refugees, and in        affinity with Asia including all the
(www.canine-epilepsy-guardian-angels.                                                        winter months, so it is best to test                                                                                                     the stigma that is associated with
                                                damage has occurred as a result of                                                              particular, the Sudanese community.         cultural, historical and culinary
com) lists likely causes of canine                                                           during this time.                                                                                                                        epilepsy. To do that we need to
                                                phenobarbital. In hindsight, I would                                                               A close personal involvement with        aspects!
epilepsy and tips to deal with seizures.                                                      While it is known that acepromazine,                                                                                                    achieve significant funding to raise
                                                have also requested regular liver                                                               epilepsy led me to The Epilepsy Centre.       In June 2009, my professional and
   I have also been informed by a book                                                     a sedative commonly given prior to                                                                                                         community awareness and education
                                                ultrasounds.                                                                                    As Chief Executive Officer my role is       personal interests came together
called Living With and Without Canine                                                      general anaesthesia, will often trigger                                                                                                    that epilepsy can be managed and that
Epilepsy by Caroline D. Levin. Both           ƒ The liver cleansing diet (developed                                                             to lead both our South Australian and       when I was appointed Chair, IBE
                                                                                           seizures in an epileptic pet, I would                Northern Territory teams and more           Western Pacific Regional Executive        adjustments can be made to overcome
resources became my bibles on living            by Dr Jean Dodds) which can assist
                                                                                           add that some heartworm medication                   dedicated staff are needed to meet          Committee. The Western Pacific            the issues.
with canine epilepsy and being able             dogs suffering from liver damage as a
                                                                                           and flea treatments may also bring on                the unmet need and growing demand.          Region includes China, Mongolia,             At the recent Epilepsy Inquiry
to treat and manage my beloved pet at           result of phenobarbital.
                                                                                           seizures in an epileptic pet. To help                Advocating for our clients is a time-       Korea, Taiwan, Japan, Singapore,          held by our Parliamentary Friends,
home. Through the book and the website        ƒ Feeding four or five small meals           overcome this problem, I would spread                                                                                                      stigma was a common issue in the
I have learned about such things as:                                                                                                            consuming and resource-hungry activity,     Indonesia, Philippines, New Zealand
                                                throughout the day so as not to            these treatments across the month and                                                                                                      many submissions received and the
                                                                                                                                                however, it is core business for us to      and Australia, and the role of the
                                                overtax the liver.                         only use products that have a minimal                                                                                                      real impact it has on the lives of
ƒ Keeping a diary to record seizures,                                                                                                           address the injustices that our clients     executive committee is to coordinate
  medications, dosages, changes in diet,
  vaccinations, and heartworm and flea
  treatment (to pinpoint triggers for
                                              ƒ The use of vitamins to help support
                                                the liver.
                                              ƒ Ataxia or reduced coordination in the
                                                                                           risk of triggering a seizure.
                                                                                              I hope this information is of assistance
                                                                                           and interest to your readers who are
                                                                                                                                                experience.
                                                                                                                                                   The Epilepsy Centre has experienced
                                                                                                                                                a tough year because of the global
                                                                                                                                                                                            IBE activities, organise forums,
                                                                                                                                                                                            increase membership, identify
                                                                                                                                                                                            significant regional issues and build
                                                                                                                                                                                                                                      people living with epilepsy was very
                                                                                                                                                                                                                                      clearly brought home to all those in
                                                                                                                                                                                                                                      attendance. With the support of our
                                                                                                                                                                                                                                                                                 “
  seizures and work out what assists in         hindquarters as a result of excessive      living with canine epilepsy.                         financial crisis. The Australian            on the work of previous executives to     Parliamentary Friends, we can bring
  maintaining long seizure-free periods.        potassium bromide in the system.              I would like to add that I had a supportive       economy has suffered greatly and as         continue to raise epilepsy awareness      ‘epilepsy out of the shadows’.
                                                                                           veterinary team and neurologist at all times.

26   THE EPILEPSY REPORT DECEMBER 2009                                                                                                                                                                                          THE EPILEPSY REPORT DECEMBER 2009           27
28   THE EPILEPSY REPORT DECEMBER 2009

				
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