Wally Lewis Addresses Our Parliamentary Friends of Epilepsy
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Issue No. 2, 2009 Wally Lewis addresses our Parliamentary Friends of Epilepsy tips on managing Canine epilepsy journalist Julie Medew lifts veil on epilepsy neuropsychologist Robert Mittan concludes ‘beating bad seizures’ Professor Mark Cook Intelligent brain implants for intractable epilepsy Gillian Davies Collecting experiences! Read JECA’s submission to the Inquiry into the Impact of Epilepsy WELCOME Welcome to the latest edition of The Epilepsy Report. 2009 has been an exciting year for the Australian epilepsy CONTENTS Wally Lewis helps 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).