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 movement. With the support of our Parliamentary Friends for Special feature Epilepsy, the first-ever Inquiry into the Impact of Epilepsy in 6 Report on the Inquiry Australia was held at Parliament House, Canberra. With the bring epilepsy out into the Impact of 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 of the shadows write to our parliamentarians on how epilepsy impacts on their lives and the lives of the people they support, and proposing s guest speaker at October’s epilepsy, encouraged him to ‘come ways to help make living with epilepsy a little easier. AParliamentary Friends of Epilepsy clean and get something done about it’. The Inquiry itself was treated with the same sense of priority. breakfast, past Australian Rugby League Wally had, in the past, considered 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 4 Professsor step during his illustrious football had little choice, brain surgery was his the football field when during a seizure Gary Humphries. It was just that important. 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 people living with epilepsy including the lack of local research implants for epilepsy when he contemplated ending it all. Wally Lewis football field. It was hard to reconcile and Professor Sam Berkovic at Austin data, stretched specialist services and the difficulty in attracting 14 that public person with the one standing Health where in February 2007 he had Many were surprised to hear that his 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 of the “flu” for the next seven years. It awareness campaigns. Alongside these practical issues the during social occasions when he was easy with Wally describing “the two- was during a Test match in Brisbane convenors heard the individual experience, delivered movingly terrified a seizure would give him away. year roller coaster ride from surgery to when he took a heavy knock in a tackle, at times, of the impact epilepsy has on day-to-day lives. It became apparent that the ‘aloof’ returning to work feeling more like five or ‘arrogant’ tags that often described that a seizure followed. Subsequent A Report of the proceedings and recommendations will be years, but the destination was worth the Wally in the media, was his way of journey. medical tests finally diagnosed his tabled in Parliament early in 2010. With our Parliamentary dealing with the unpredictable nature “It was a long and intense battle with ‘bouts of flu’ as seizures: Wally had Friends as advocates, we are optimistic that their Report will be 16 Julia Medew Award winning journalist of epilepsy. Anxious that a seizure some very scary and very frustrating epilepsy. a catalyst for lasting change. would occur in the public eye he would periods along the way. For the next twenty years Wally and 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. part three on how to he would stand back, remaining on the I’m very happy that I did what I did and While the father of three said he never ‘beat bad seizures’ spoke about it to his kids not wanting Editor fringe of the conversation in case he had we had the problem looked after and it is 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 them what to look for if he had a seizure Denise Chapman received hundreds of cards and letters 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 24 Gillian Davies continue to keep his seizures a secret. epilepsy or undergo the same radical seen him have a seizure, he had always medical aspects are not intended Collecting experiences managed to hide it from them. Contributors to replace competent medical, or Keeping secrets is what people with surgery, Wally told how he made a For all who attended the breakfast Gillian Davies, Alison Hitchcock, other health professional advice. epilepsy become very good at until promise to himself to personally contact Jo Jeisman, Dr Robert Mittan, the unpredictable nature of epilepsy Wally’s frank admissions of his personal All content is copyright and may each and every one. “It took some Julia Medew, Jessica Purnama. struggle really drove home the far- not be reproduced without prior gives them up. And this is precisely time,” he said, “but I eventually made reaching social impact epilepsy has on permission. Contributions are Wally Lewis addresses Parliamentarians 3 what happened to him in November contact either by telephone or letter, to Photography people’s lives. welcome. The Editor reserves the 2006. While presenting the sports news thank them for their support.” Dreamstime.com JECA’s submission to epilepsy Inquiry 7 right to edit content for reasons of on Channel 9 in Brisbane, Wally told Having hidden his epilepsy for 20 Epilepsy now occupies a prominent space or clarity. Everything Epilepsy: new online forum 10 how he had a seizure on-air. His worst place in Wally’s life, sharing the stage Print Pegasus Print Group years, Wally told how he decided to 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. PLUS “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 Parliamentary Friends Breakfast 14 818 Burke Road Epilepsy Queensland Inc there for some 2 million viewers to see. Champion’s return to the Spotlight has football. I have to say, it’s something that 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. [email protected] Epilepsy Foundation of Victoria had let everyone down, particularly, There were some really unusual rumours Today, Wally is happy to be an www.epilepsyaustralia.net Epilepsy Association of WA face2face with Robert Cole 27 his employer. He made the decision to too, so I had to be open. I had to tell the advocate for epilepsy, to be the public National Epilepsy Helpline “jump rather than be pushed”, but found lot,” he said. face of a condition that for too long has been hidden in the shadows. 1300 852 853 this wasn’t necessary when the station Not holding back, he revealed the manager, who was aware of Wally’s embarrassing moments on set and on We thank him for that. 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 the treatment of epilepsy. from stimulating nerves in the ear Bionic Ear stimulator) and proceed implantable neurostimulator 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.

he majority of people diagnosed Hospital, Melbourne and Senior at the Bionic Ear Institute is focused Twith epilepsy achieve seizure Research Advisor at the Bionic Ear on the development of just such an control with anitepileptic medications. Institute. The team consists of experts implantable device. A key of this The Bionic Ear Institute 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 biomedical engineering and bio-signal processing algorithms to monitor the he Bionic Ear Institute (BEI) is an ƒƒ Brain implants designed to The BEI works closely with many side effects and their efficacy cannot be processing; they bring a wealth of electrical activity of the brain and make Tindependent, non-profit, research monitor, diagnose and treat a networks and collaborators. guaranteed. Because of these limitations experience to both the clinical and rapid decisions to detect and predict organisation working in the field of variety of neurological disorders More information about the work 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 ƒƒ 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 ƒƒ 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 ƒƒ 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 n order to fully understand the impact during the morning where key organisations Living with Epilepsy in Australia, prepared by JECA for our Parliamentary Friends. The full text of this report is available Iepilepsy has on families around the were invited to make a statement to the on the Epilepsy Australia website http://www.epilepsyaustralia.net/Advocacy/Submissions/Submissions.aspx country, the Parliamentary Friends of Inquiry and answer questions in support of 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 Dr Sophie Calvert (Qld), Helen Whitehead systemic and sustainable change. approach across Australia in the documentation of the (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 Jill Hall MP and Robert Cole (JECA). a) What is known about the incidence, the incidence, prevalence, mortality and Damian Hale) Mark Francis (Client Services will produce a report with recommendations morbidity of Epilepsy in Australia Manager, Epilepsy SA & NT), Natalie which will be tabled in both houses of prevalence, mortality and morbidity 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 8 (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. Natalie Reimer, Keith & Mia Fairly with their In Australia epilepsy generally remains unidentified or 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 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 9 and 220,000, with some 660,000–880,000 Australians D’Souza identified areas for further study , while the SEISMIC having epilepsy in their lifetime. Epilepsy does not happen Study currently undertaken by The George Institute Research 10 in isolation, it is a ‘family condition’ that impacts on all has reported pilot study results . 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. the spectrum of health, education, community, social and ƒƒensuring the National Health Survey gathers information qualifications, than people with other chronic illnesses. Underemployment contributes very significantly to the disability sectors. about epilepsy and seizure prevalence; As a community based agency JECA recognises that economic burden of epilepsy. For many people with epilepsy, ƒƒsupporting the inclusion of questions relating to attitudes research indicates Quality of Life (QoL) in epilepsy is strongly employment is a major quality of life issue that impacts e) Practical measures that will better towards epilepsy in the Australia Survey of Social Attitudes; related to seizure frequency and therefore the organisation heavily on their financial status and psychological wellbeing. support people living with epilepsy and 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 ƒƒmaking 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 ƒƒsupporting 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 ƒƒensuring 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. agencies such as CRS Australia, Centrelink, Job Network c) The barriers to social and economic Mapped against this Report, JECA considers the most Providers and other vocational organisations need to be fully Recommendations participation for people living with epilepsy, important health issues in epilepsy to be: including education, employment, and equipped to understand epilepsy, its impact on the person, and In our recommendations to the Inquiry, JECA has identified transport. the person’s individual needs, in order to effectively assist the ƒƒThe prevalence of epilepsy among Aboriginal and Torres six key areas that it believes will produce systemic and 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 ƒƒAccess to services for people living with epilepsy in remote living with epilepsy. difficult to overcome than the seizures themselves.” and rural areas. Transport 1. An improved understanding of the impact epilepsy has World Health Organization ƒƒTimely access to quality care in public hospitals including Transport and travel is something that most people take for on Australia, its people and its economy by ensuring improved access to specialist care. granted, but it is clearly very difficult for many people living the National Health Survey gathers information about Stigma ƒƒTimely access to investigative procedures such as with epilepsy to get from place to place. epilepsy and seizure prevalence, supporting the inclusion Superstition and stigma have surrounded people with electroencephalographic (EEG) recordings, magnetic In a recent survey, only one third of people living with of questions relating to attitudes towards epilepsy in the epilepsy for thousands of years, creating formal and informal resonance imaging (MRI), video-EEG and positron emission epilepsy drive their own car and of this group, over half have Australia Survey of Social Attitudes, and supporting more barriers to participation in community life, many of which still tomography (PET) for adults and especially children. had their driving license suspended at some time. People with detailed applied social research into the morbidity of exist. Seizures can challenge the norms of social behaviour; ƒƒImmediate inclusion in the National Chronic Disease epilepsy spend an average of $37.42 a week on transport. 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 19 living with chronic illness, fear of having a seizure while on people with epilepsy. 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 ƒƒResourcing primary care practitioners with referral pathways it is, how to manage it, so that people with epilepsy can 11 attached to it. 15,16 inconsistency) in travel assistance for people with epilepsy. 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 ƒƒIntegrating acute care and community epilepsy services thus 20 4. Workplaces that are informed, free of stigma, and support 12 months. The most common place for discrimination is the show seizure control. This can result in restricted or loss of strengthening primary health care services by focusing 12 those with epilepsy to remain in employment through workplace, followed closely by educational institutions. employment, social isolation and increased dependence on on proper diagnosis, treatment and patient adherence thus 21 support to develop and undertake workplace awareness family, friends, public transport, and taxis for mobility. minimising avoidable hospitalisations. programs. Education For those whose epilepsy is not controlled, driving will ƒƒStrengthening consumer engagement and voice through 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 6. Support people with epilepsy and their carers so that they in the classroom, teacher attitude towards students with 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, years, children with epilepsy start to experience the barriers represent the needs of people with epilepsy and their carers, have been instigated in some states but these have been brought about by their condition when they can’t attend school and to work with National and State bodies. 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 sporting events and school excursions. Continued page 8

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 unique partnership has been formed to Liz, seizures often arise from these has been seizure-free and medication-free Jessica Purnama, medical student, University of Melbourne Abetween Epilepsy Australia and tumours and epilepsy becomes another for ten years. American-based Meningioma Mommas challenge for those affected to overcome. Lindy is unshaken in her belief that to create a 24/7 online epilepsy forum: Through regular emails Lindy and Epilepsy ACT saved her son’s life and e know that people with epilepsy Carer burden in adult Everything Epilepsy. Liz exchanged information about since that day has volunteered to assist Wdepend on their families or epilepsy and NES Meningioma Mommas is a non-profit meningiomas and epilepsy. Liz had where ever she could – including several friends for various reasons, including 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. meningioma as well as to long term epilepsy from a young age and she had friendship between Lindy and Liz was EEG Monitoring unit, traumatic experience for carers. Carers Westphal-Guitti et al. (5) found mild to can be physically, emotionally or survivors and caregivers during their acquired a lot of information over the forged and out of that came a business as part of my medical 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 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 Australian connection. researcher and advocate as she struggled Everything Epilepsy forum further to an interaction with unlike epilepsy these are not caused experienced significant burden. No study by abnormal brain waves. These Lindy Klarenbeek, who lives in to find appropriate treatment for her son. strengthens this unique connection many patients with has investigated carer burden in NES. the ACT, first came in contact with This led her to Epilepsy ACT where they providing the opportunity for all people episodes are known as non-epileptic 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? with seven meningiomas. contra indications of antiepileptic experiences of epilepsy. experiences. seizures in the form of convulsions Generally, we think that carer A meningioma is a mainly benign medications. Armed with this knowledge It’s easy – just go to www. or unresponsiveness, the episodes are burden increases with the frequency (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 the arachnoid layer. The tumour typically seizures, he no longer suffered psychotic message to the carers: syncope, sleep disorder, and migraine (1). sociodemographic factors (age, gender, grows slowly and doesn’t spread to any events and Lindy was no longer terrified that we care about them Similar to people with epilepsy, people etc.) to be associated with burden. They other part of the body. As happened that he would take his own life. Today, he with unmanaged NES may experience found that high burden was associated 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 patient. This suggests an important References 11. Joint Epilepsy Council of Australia. A Fair Go for People Living with ones. carers can also experience substantial 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: simplified classification of seizures. wellbeing and burden. 1. Begg, S., Vos, T., Barker, B., Stevenson, C., Stanley, L., & Lopez, A. The 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. psychological or emotional, social, Firstly, reflecting on the scarcity of 3. Hauser, W. A., Annegers, J. F., & Rocca, W. A. (1996). Descriptive 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. for a chronically ill or impaired family and NES, and the factors associated Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p.23 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. on individuals, their families and the Australian community. Camberwell: measured using questionnaires, such instruments such as the CBI are mostly 6. Joint Epilepsy Council of Australia. A Fair Go for People Living with Epilepsy Foundation of Victoria, 2008. as the Zarit Burden Interview (3), and developed in the area of dementia and do Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p. 25 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 (4). Carer burden is important to be related aspects of caring for people 8. Joint Epilepsy Council of Australia. A Fair Go for People Living with Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p.17. with seizures. We therefore piloted the Epilepsy: Report to the Parliamentary Friends of Epilepsy.(2009). p.7 20. Joint Epilepsy Council of Australia. A Fair Go for People Living with addressed because high burden may 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 Scale (BoSS), a novel seizure-specific and methodology for patient recruitment form the Australian national the patients, resulting in poor outcomes Epilepsy: Report to the Parliamentary Friends of Epilepsy. (2009). p.15 burden questionnaire. 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, 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 burden is substantial to plan for strategies epilepsy incidence study to measure illness consequences (SEISMIC). 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 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 Australian Pregnancy Video EEG Monitoring Unit of a of 100, and the scores were concentrated that patient and carer psychosocial larger sample. 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 Register celebrates study. The patients either had intractable 80, and a more even score distribution more important predictors of burden Our study addressed the gap in the carer burden literature epilepsy or NES (including PNES and (Figure 2). This showed that the BoSS than other investigated clinical and in adult epilepsy and NES patients. This was the first study to 10 years other NES), thus required diagnostic was better able to pick up burden than sociodemographic factors such as investigate burden in the VEM unit in Australia. We have seen 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. when and where he/she will have the next associated with carer burden. Further This is because the VEM unit patients he Australian Pregnancy Register for Women on seizure”, “I feel that I may eventually be * Sociodemographic and clinical questionnaires, Hospital Anxiety TAntiepileptic Medications with Epilepsy and Allied unable to cope emotionally with caring Seizures and Depression questionnaire (8), Quality of Life in Epilepsy-89 (9), Conditions recently celebrated our 10th Anniversary and we 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 b) Data collection from patients and ES NES non-convulsive seizures. effects of their medication or seizures (in the case of epilepsy) *** 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 Psychological Physiological instances were told to terminate their pregnancies because of CBI and the BoSS. Various information Partial Generalised Unclassified Acknowledgements: 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. Terence O’Brien (Royal Melbourne Hospital), Ms Alexandra Gorelik including sociodemographic factors Figure 1. Its one thing to have epilepsy and to cope with the stigma of 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. convulsive or non-convulsive seizure, all patients and carers at the VEM unit. Our Register has evolved over the last 10 years and has now For further information, e-mail Jessica Purnama on 1500 women registered, we are regularly doing data analysis diagnosis of epilepsy, NES, or dual [email protected] 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 comprehensive. To ensure the reliability Distribution of CBI and BoSS scores with epilepsy. Journal of Neuroscience Nursing. 2007 Dec;39(6):354-60. 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. of the BoSS, it underwent a number burden: seizure-free may not equal burden-free. Journal of Epilepsy. 1800 069 722. 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 all information for this study is gathered by four telephone CBI Overall model Carer depression (HADS) 1.56 0.67 0.6758 0.0100 of adults diagnosed with epilepsy. Seizure. 2004 Oct;13(7):499-508. 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 R2 = 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 delivery (5 mins). During the interviews, women have the p < 0.0001 9. Devinsky O, Vickrey BG, Cramer J, Perrine K, Hermann B, Meador K, 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 The BoSS had a low missing response Nov;36(11):1089-104. birth, their epilepsy and their antiepileptic medication. Adjusted R2 = 0.5027 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 F = 12.62 Allison Hitchcock BoSS were more relevant to the carers and New Zealand Journal of Psychiatry 2006 Nov-Dec;40(11-12):995-1002. p = 0.0003 www.apr.org.au 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

he International Bureau of Epilepsy and Correspondent for The Times, UK. helps TUCB 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 lift the The award, an initiative of the Salud: Epilepsia (Health Hour: Epilepsy), International Bureau for Epilepsy (IBE) and broadcast on Spain’s Canal 9 TV. biopharmaceutical company UCB, aims to Member of the judging panel, Joachim increase awareness, improve understanding, Mueller-Jung, writer and journalist for veil on 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 epilepsy 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 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 Mlooking 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 with experience of epilepsy, was tasked told the story of 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 ‘‘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 a young woman’s participation in a study with identifying responsible, informed, 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 online and broadcast. 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 ‘‘I now believe I was having absent tests to determine the cause of her medication, she is one of 94 people vice versa. commended Floriane Closuit for her thought- or falling. Winners seizures, which is basically staring seizures, but these were inconclusive. taking part in a Melbourne University Mr Chambliss has also observed Epilepsy Foundation of Victoria provoking film – Par Surprise(s) (By Surprise) off into space. It’s like someone has At 35, she was finally diagnosed as study that is examining the influence chief executive Graeme Shears, who The winner of the print/online category is hanges in people’s artwork after they and its powerful ability to humanise epilepsy. put you on pause.’’ having epilepsy — a disorder of brain of epilepsy on artistic expression. have been medicated, a clear example is helping fund the research, said he 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 “A well-written, easy to read article Treatment of Epilepsy in Kosovo. 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 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 Photo: Joe Armao where she was having up to four or basic seizure first aid. It is still not a commonalities in the artwork 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!

. G. Coombs Pty Ltd is a major Aprovider 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 Team Wilso (left to right) Darren Mprrison, Leigh Wilson, Matt Crowe and Craig Breadman of $2500 to the winner’s preferred sunny winter’s day in Canberra “This is a wonderful community event oaring some 250 metres above the charity. Asaw the 3rd Annual Bed Race that raises awareness of epilepsy and the Scity, the Sydney Tower is one of Mr Ben O’Brien, the proud recipient for Epilepsy ACT take place at the 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 he Sun Herald City2Surf is the world’s largest timed fun run that takes place in months ago with myoclonic epilepsy, TSydney in August each year attracting some 70,000 participants on the 14km I was surprised to learn how common route from Hyde Park in Sydney’s CBD to world famous Bondi Beach. 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

From Left to Right Freya Dahl, Kim Hesline, Ben O’Brien, David Rouvray, Paul Eagling 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

his is the final article in a set that person’s seizures are called Tof three designed to help you refractory. This term refers to seizures take control over seizures. In the first 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 the diagnosis right. In the second article be tried before seizures are called medications, herbal supplements, and supplement, a growth spurt, etc.? Again, What if you are: Robert J Mittan we learned about treatment strategies. refractory. Some epilepsy specialists certain foods. Work closely with your once you have figured out the cause, the 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! If the child suddenly has an increase also vary on its own, for reasons we do child receiving the right medication for their families. A clinical psychologist, he about the medical aspects of epilepsy, we You have already read about the many not yet understand. his or her type(s) of seizure? Different is recognized as one of the foremost in seizures, is it due to a drop in blood will put all of this information together diagnostic and treatment possibilities Some children go from periods of epilepsy educators in the world. His work levels or is it due to something else 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 range. If the blood level is where it temporary increase in seizures. It is Sometimes an unexpected medication people with epilepsy, parents of children Stopping bad seizures you can do beyond this list, but it is a should be, then you know that something my opinion that the feeling you must works for a particular child. A certain with epilepsy and family members the A recent study found that 47 percent good start. do something every time seizures amount of trial and error may be information and skills needed to get the else is responsible for the seizures. You 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?” may have lowered seizure threshold, or increase in seizures, find out if the medication is to be sure the diagnosis their families in Australia, Canada, New medication after the first two failed. Research finds the most common cause activities that might encourage seizures winds will calm again. You don’t want 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 training in seizure types and seizure with the problem of mesial temporal reduction of medications to just one at Things to check on if your child 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 ideas of things you could do to help your at the end of your rope, but just at the ➡ Knowledge is power – and seizure control. epilepsy than they thought they had. procedures may be required to detect medication, the resulting improvement Have you learned everything you can about your 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 S.E.E. programs I get letters and emails imaging. If mesial temporal sclerosis every day? Failure to do so is the leading cause 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 level for your child? (either too low or too high seizure free after getting their diagnosis not likely to work and surgery is the 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. Are you keeping the doctor informed of any Does your child have an 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 brain where they start. Most partial special training and interest in treating be thought if a person’s seizures were year. being measured to learn the concentration that 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 ➡ of Infancy, and other rare but serious ➡ Are your child’s seizures correctly 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 ➡➡ Is your child avoiding seizure triggers medications are most likely to work best 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, it may be possible to isolate it with general practice pediatrician to keep up (proper rest, exercise, nutrition, etc.)? 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 Seizures & Epilepsy in Childhood: Being the Other One: Growing Up seizure threshold? 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 difficult to control. These include less Ketogenic diet or VNS? cannot emphasize enough how important Guide (3rd Edition) Continuum, 2006 (The SEN Series). for you and the doctor to know if you are winning Orrin Devinsky, New York, Demos, 2008. or losing – or what is making a difference in common types of seizures such as If medications have not worked and getting specialty care can be. I have An excellent, clear and concise handbook, seizure frequency – if you don’t keep score! myoclonic, atonic, and tonic seizures. your child is not a surgical candidate, seen family after family go from terrible A comprehensive and easy to read guide suited to parents and teachers, includes by a leading authority. Topics include ➡➡ 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 as well as teaching 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: ➡➡ Does your child have mesial temporal these categories, you will probably want is difficult, some children have dramatic epilepsy specialty centre (usually called It Happened to Me 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. approach: lifestyle, medication, surgery, If the ketogenic diet is either not Some kids do not respond, no Maryland, Scarecrow Press, 2003. ➡➡ Is your child a candidate for surgery for Lynn Blackburn, New York, Demos, 2003. 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 epilepsy? A thoughtful discussion of children with If your child has Complex Partial Nerve Stimulator (VNS) might be do respond. And for the future of your life by understandg symptoms, treatment ➡➡ Has your child been evaluated for the epilepsy at all stages, emphasising family and management strategies. There Seizures or Partial Seizures Secondarily child, it is better to reach for success ketogenic diet or the Vagus Nerve Stimulator? the answer. While it seldom succeeds issues, learning, behaviour, social skills, 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

Experiences collected atstreet level!

he small advert offered part-time voices. It took a while to realise it was “I’m all right thanks” or “not few pensioners who had limited funds. counselling and grief work was Twork: “Door to Door Collecting just as well some of these people didn’t interested.” (Hard to smile as you walk Those days called for positive thinking. interesting. The wheels were in motion. for the Epilepsy Foundation of Victoria”. come to the door. They weren’t going to away, thinking about the people that a Whenever there was a donation of 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.

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