Epilepsy News - Epilepsy Ireland
Transcription
Epilepsy News - Epilepsy Ireland
Epilepsy News Shining a light on epilepsy Epilepsy Ireland Issue 61 Spring/Summer 2013 Rose and rose buds support epilepsy! In This Issue: Rose of Tralee Nicola McEvoy is pictured with little rose buds, twins Hannah and Emma Boughton, both of whom have epilepsy, at the launch of European Epilepsy Day and the St Valentine’s Rose Appeal in February. • • • • • • Epilepsy Ireland – A new name Government fails people with epilepsy Public understanding of epilepsy National award for Training For Success Disclosing your epilepsy National Epilepsy Week contents Note from the editor Launching the new Epilepsy Ireland name in February are Emma Boughton (aged 6) and Sadbh Mechan (aged 5) pictured with Rose of Tralee Nicola McEvoy and Peter Murphy, Deputy CEO, Epilepsy Ireland. 3 National award for Training for Success 4 News from around the world 5 Epilepsy Monitoring Units 6 European Epilepsy Day 8 Freddie and his epilepsy Welcome to the Spring/ Summer 2013 bumper issue of the new-look Epilepsy News, the first under the new Epilepsy Ireland name. 10 Epilepsy journalism award for Midlands 103fm National Conference 2013 The changeover to Epilepsy Ireland has been smooth and the feedback received from all quarters has been overwhelming supportive. We hope that the new name will play a key role in shining a light on epilepsy and helping to change public perceptions of the condition. Sadly, as the results of our recent survey show, much still needs to be done in this area. 11 Disclosing your epilepsy 12 Generic substitution on the way National Epilepsy Week 14 Falling, by Peter Sirr (part 2) 16 Epilepsy Online Support Group 17 Talking to your children about your epilepsy 18 Epilepsy research at DCU European Month of the Brain 19 New Director of Services Epilepsy Awareness Committee the time of writing, although a schedule for the opening of both units has now been announced. Of equal concern is the Government’s refusal to allow an exemption for anti-epileptic drugs in the Health (Pricing & Supply of Medical Goods) Bill which will introduce a system of generic substitution in the very near future. Despite a long and thorough campaign, it now seems that we will need to shift our attention away from the political arena in order to ensure the safety of people with epilepsy. The year has been an exceptionally busy one to date with plenty of good news and not-so-good news to report. In addition to another successful European Epilepsy Day, we report in this issue on a national award for Training for Success and an international award for an Irish radio documentary on epilepsy. National Epilepsy Week (May 20th – 26th) provides the opportunity to launch an educational campaign on generic substitution in epilepsy and the week is also dominated by a number of significant international conferences taking place in Dublin including the European Forum on Epilepsy Research. May has also been designated European Month of the Brain by the European Commission and you can find details of all our events this month on pages 22-23. However, we are disappointed to report that the Epilepsy Monitoring Units in both Cork and Dublin remain closed at We hope you like the new design, created by our friends at What Box? Creative. Let us know your thoughts! European Forum on Epilepsy Research 20 Fundraising news and events 22 Regional news and events researchers, clinicians, care professionals, lay organisations, industry, people with epilepsy, health policy makers and government representatives. The 3-day event will aim to devise strategies for increased funding for epilepsy research and to tackle important issues such as epilepsy stigma and standards of care in epilepsy. The European Forum on Epilepsy Research (EFER) will take place in Dublin from the 25th to 27th May as part of the Irish Presidency of the EU and European Month of the Brain. 249 Crumlin Road, Dublin 12. Tel: 01 4557500 Fax: 01 4557013 Email: info@epilepsy.ie Web: www.epilepsy.ie The Forum is organised by Epilepsy Advocacy Europe, a Joint Task Force of the International League Against Epilepsy and the International Bureau for Epilepsy and is part funded by the European Commission. Registered Charity Number: 6170 Design and layout by What Box? Creative. Printed by Doggett Print & Design This ground-breaking initiative brings together the key stakeholders in the epilepsy community including 2 Céad míle fáilte to all our international visitors this month! www.epilepsyresearcheurope.org Star Award for Training For Success Left: Current student Denise O’Connell accepted the Aontas Star Award on behalf of TFS. Below: Celebrating the Star Award are David Gillick, student; Paul Sharkey, Epilepsy Ireland; Maire Tansey, TFS course facilitator; Denise O’Connor, student and Honor Broderick, Programme Manager. Training For Success (TFS), Epilepsy Ireland’s one-year training programme for people with epilepsy run in partnership with the Institute of Technology, Sligo was recently announced as the winner of the 2013 AONTAS Star Award - Nationwide Category at a ceremony in Dublin. The Star Awards are presented every year to acknowledge and showcase the work that communities and communitybased organisations make in the delivery of adult educational programmes throughout the whole country. Projects must show a high level of collaboration and partnership amongst participating groups; a learner-centred approach to education and clear evidence of outcomes. students who have attended over the years. It is this partnership that has made TFS the success it is”. 115 projects were nominated in total this year, covering the four provinces and the fifth Nationwide category, of which TFS was declared the winner. International research shows that people with epilepsy are more likely to underachieve in education than people without epilepsy, and they also face greater challenges in accessing and maintaining employment. From 1998 to 2012, 180 students have completed the course. Of these students, 23% progressed onto higher education, 18% gained employment and 36% pursued further education and training. TFS is the only course of its kind in Europe, in which a third level college and a voluntary organisation have teamed up to tackle the employment and education needs of young people with epilepsy. As well as creative and academic topics, the course provides a tailored individual focus on career choices, educational and employment goals, identification of upskilling needs and the management of epilepsy. Accepting the award from Minister for Training and Skills, Ciaran Cannon on behalf of Training For Success, current student Denise O’Connell said, “When I was at school, all they saw was my epilepsy and not my potential and I wasn’t given a chance. Being on TFS was the first opportunity I had to be treated as a unique individual. I now intend to do a degree in Event Management and plan to set up my own business.” Paul Sharkey, Epilepsy Ireland’s Training & Communications Manager said “the award is a mark of recognition for the commitment of TFS staff Honor and Maire and all the 180 Honor Broderick, TFS Programme Manager said, “We’re thrilled, just delighted. The award is a marvellous validation of the course and IT Sligo’s very progressive decision to embrace it. It’s a wonderful boost too for Epilepsy Ireland and for FAS, which funds the course.” Training For Success is currently recruiting for its 20132014 term. If you are interested in finding out more about the course, please contact Programme Manager Honor Broderick or Programme Facilitator Maire Tansey at 071 – 9155303. “This course is very good because it builds your self-confidence. It also teaches you about your own epilepsy, which I found helpful because I wasn’t entirely sure what it was. It also gets you thinking about the future and what it is you want. I hadn’t a clue - I was changing my mind all the time! Now I know, I have decided to pursue a career in the fitness industry, and that is thanks to TFS”. TJ Butler, current TFS Student http://bit.ly/ZBU6S0 3 News from around the world Obama announces plan to map the brain Calling Artists with Epilepsy The US-based Epilepsy Therapy Project and the Epilepsy Foundation are inviting artists from around the world who have epilepsy to participate in the Hidden Truths, The Mind Unraveled art show. Selected pieces will be featured and offered for sale in October at the Susan Nelson Gallery in Newport Beach, California. The deadline for submissions is June 1 and there is no entry fee. hoped that this work will help doctors determine which of their patients would benefit most from non-drug therapies such as brain surgery. http://bit.ly/1579oas 5,000 neurology patients wait longer than a year www.epilepsy.com/hiddentruths. Challenging stigma in the UK UK charity Epilepsy Society have announced results of a new study on public perceptions of epilepsy. The study is the exact same as one conducted in 2003 and has concluded that not much has changed in ten years in terms of public awareness of epilepsy. The results echo the findings of Epilepsy Ireland’s recent study (see page 6) with many of the usual myths and misunderstandings around the nature of epilepsy and first aid still evident. http://bit.ly/11k0Tmb Major Canadian investment in epilepsy research A team of researchers in Montreal, Canada have been awarded a $10.8 million research grant to conduct a fouryear study to develop a personalised medicine approach to early diagnosis of drug-resistant epilepsy. The team will work on identifying genetic changes that predispose people to epilepsy and also changes that predict the individual’s response to various anti-epileptic drugs. By rapidly identifying patients who will not benefit from existing drugs, it is 4 Epilepsy Ireland representatives Carol Saarsteiner, Peter Murphy and Wendy Crampton at Leinster House recently with the NAI to highlight neurology waiting lists. Information obtained by the Neurological Alliance of Ireland (NAI) following a Freedom of Information request show that a total of 5,580 adult and child patients with conditions such as epilepsy, Parkinson’s, multiple sclerosis and severe migraine have been waiting over a year for an outpatient appointment. Over 1,000 patients have been waiting for more than four years. NAI Chairman Chris Macey said this equates to “suffering on a monumental scale in every town and parish the length and breadth of Ireland , much of it avoidable”. http://bit.ly/ZgCRH4 The BRAIN Initiative is a proposed research initiative announced by the Obama administration in April with the goal of mapping the activity of every neuron in the human brain. Intended to “help researchers find new ways to treat, cure, and even prevent brain disorders, such as Alzheimer’s disease, epilepsy, and traumatic brain injury”, the initiative will cost more than $300 million a year for 10 years. In welcoming the initiative, the Epilepsy Foundation noted that while the US currently spends $30 billion annually on medical research, just ½ of 1% is spent on epilepsy. http://1.usa.gov/16tBd9I Valproate in pregnancy tied to autism risk Women who take the epilepsy drug valproate during pregnancy are three times more likely to have a child with an autism spectrum disorder, according to new Danish research published in the Journal of the American Medical Association which analysed over 650,000 children born between 1996 and 2006. Previous studies have found more birth defects and lower intelligence among children of mothers who took valproate in pregnancy. “Valproate is an effective drug, but it appears that it is being prescribed for women of childbearing potential at a rate that does not fully consider the ratio of benefits to risks,” wrote Dr. Kimford Meador and David Loring in an accompanying editorial. http://bit.ly/11LEoFo New anti-epilptic compounds identified Researchers at the University of Sheffield may have discovered up to 46 compounds with previously unknown anticonvulsant properties. Many of these molecules are already used to treat infectious, psychiatric and inflammatory disorders and are now being regarded as starting points for new research in the development of additional epilepsy drugs. The compounds concerned were shown in the study to suppress seizures in zebrafish. http://bit.ly/170JMtQ HSE to open Epilepsy Monitoring Units By Peter Murphy, Epilepsy Ireland Deputy CEO Left: Grainne O’Connor from Cork, whose story helped keep the EMU closures in the spotlight. At the time of writing, Grainne was being assessed in London having being initially turned down by the HSE for treatment abroad on the basis that “appropriate services” were available in Ireland. Right: Yvonne Brennan, who has been turned down twice for treatment abroad. Left: Examiner journalist Catherine Shanahan shows Health Minister James Reilly a photograph of Yvonne Brennan during a media conference. The photo shows Yvonne’s facial injuries sustained as a result of her epilepsy. Above: Miriam O’Byrne from Dublin, awaiting pre-surgical evaluation and monitoring at Beaumont for over a year It may seem entirely illogical that the HSE could spend almost €1m in kitting out two state-of-the-art Epilepsy Monitoring Units in Cork and Dublin, yet refuse to open either of them, but when it comes to the health service, logic does not always seem to prevail. Units would be prioritised and that the necessary staff would be recruited. The most recent correspondence received by Epilepsy Ireland from Minister Reilly (April 10th) assures us that “I am advised by the HSE that, having secured recruitment approval from the National As we get ready to welcome the summer Control Group, Beaumont is progressing months, the redeveloped four-bed unit in the recruitment of the posts necessary to Beaumont and the new 2-bed unit in Cork support the service development. With University Hospital remain closed. They’ve regard to Cork, the HSE has advised that been closed since last autumn due to the it is the intention of the Cork University Hospital management to open the EMU HSE’s recruitment moratorium which has in Quarter 3 of this year and this will be prevented the hiring of the five nursing included in the HSE South’s 2013 Regional personnel and three EEG technicians Service Plan.” needed in each location to provide a round-the-clock inpatient service. As things stand, we still have no Earlier this year, with waiting lists exceeding 200, it took, as it often does in Ireland, public outcry and political pressure to force movement on an issue that most would regard as common sense. Thanks only to the co-ordinated efforts of people with epilepsy, medical professionals and Epilepsy Ireland speaking out; a small number of sympathetic journalists who refused to let the story drop and a band of supportive TDs and Senators, the HSE (finally) announced that the opening of the functioning monitoring service in the country to serve the needs of those who have difficult-to-diagnose epilepsy or those being considered for surgery. A solution may well be on the way, but that should not take attention from what has been a wholly unacceptable situation for people with epilepsy, especially those awaiting monitoring who continue to experience unnecessary seizures that could be manageable. At a time when the voice of the epilepsy community has been ignored on the generic substitution issue (see page 12), we have to wonder what will be next. There have been some significant improvements in the Irish epilepsy service in recent times, in particular the appointment or forthcoming appointment of 20 new candidate Advanced Nurse Practitioners in Epilepsy through the National Clinical Care programme. While this should be acknowledged, scenarios like the EMU fiasco threaten to undermine all the progress that has been made. Epilepsy Ireland continues to watch the situation closely and while we hope that no further campaigning will be needed to get both Units open as per the Minister’s schedule, we’re still not holding our breath. Thank You Epilepsy Ireland would like to thank everyone who has lent their voice to the EMU campaign so far, in particular Grainne O’Connor, Yvonne Brennan, Catherine O’Malley, Annette Murphy, Miriam O’Brien and others who “went public” with their own stories. A big thank you also to Catherine Shanahan of the Irish Examiner, to RTE Primetime and to TV3’s Ireland AM programme for continuing to highlight the issue. 5 Epilepsy Knowledge and Attitudes Survey Conducted by Amárach Research for Epilepsy Ireland In January, Amárach Research conducted a study on epilepsy knowledge and attitudes on behalf of Epilepsy Ireland. Over 1,000 members of the public answered the questionnaire with quotas set on gender, age, social class and geographical region. The findings, which were used to help raise awareness of epilepsy for European Epilepsy Day on February 11th, reveal that significant misunderstanding persists among the public in relation to epilepsy. It also found that misunderstanding was generally more prevalent in younger age categories, in men and in Dublin. Knowledge of Epilepsy Almost half (45%) of the Irish population knows someone who has epilepsy. 38% of people have witnessed a seizure. Those who know someone with epilepsy are three times more likely to have witnessed a seizure. Almost half (43%) believe that almost all seizures involve falling on the ground in convulsions (i.e. tonic-clonic seizures). 38% of people knew that this is not the case. While 86% of people are aware that epilepsy is not contagious, 7% of people think that epilepsy can be “caught” from another person and a further 7% are unsure. Men, people in the 25-34 age category and those living in Dublin were most likely to believe this myth. Over 70% of people think that the majority of people who have epilepsy must avoid flashing/flickering lights. Only 6 12% of respondents knew this to be untrue. Those in the 25-34 age category were the least likely to answer correctly. Attitudes to Epilepsy Almost 1 in 5 people (19%) said they would not employ a person with epilepsy, while 63% said that epilepsy would not be a factor. Those who know someone with epilepsy were more likely to employ someone with epilepsy. 50% of respondents believe that a negative stigma is attached to those who have epilepsy. Men and respondents who know someone with epilepsy were more likely to attribute stigma to epilepsy. Responding to a seizure 43% of people say that they would know what to do if they saw someone having a seizure. Those who know someone with epilepsy were twice as likely to say they knew what they should do. 56% of people were aware that not all seizures require immediate medical attention. Younger age groups and respondents living in Dublin are significantly more likely to believe that all seizures require medical attention. 59% of respondents said they would automatically call an ambulance. Over half (51%) of respondents would place something in a person’s mouth during a seizure to prevent them from swallowing their tongue. Less than 1 in 3 people knew that this was the wrong thing to do. Men and respondents aged over 55 years old were more likely to believe the myth. Almost 1 in 10 people believed that throwing water on a person’s face in an effort to stop a seizure was a recommended intervention. Men and younger age-groups were more likely to believe this. Almost 1 in 5 (18%) respondents would restrain a person’s movements if they were having a seizure. 59% of people knew that this is the wrong thing to do. Women and older people were more likely to know not to restrain a person. 90% of people say that they would stay with a person having a seizure until the seizure was over. Full survey results: http://bit.ly/ZXtPyL Seizure Aware microsite: www.epilepsy.ie/go/seizureaware “Despite the fact that epilepsy is the most common serious neurological condition in Ireland, public awareness and understanding of the condition remains poor. Negative attitudes towards epilepsy are a major challenge for many people living with the condition, often causing more distress than the actual seizures.” Peter Murphy, Deputy CEO, Epilepsy Ireland “You cannot stop someone having a seizure but we all have a duty to know what to do when you witness someone you know or not, having a seizure. The lack of understanding shown in this research could put the person having the seizure in real danger.” Sinead Murphy, Community Epilepsy Nurse Specialist Look back at European Epilepsy Day Thank you to all the families who took part in the EED photocall. Epilepsy poster proudly displayed at Huntstown Pharmacy by Rachel Ashe. Epilepsy Ireland’s Niamh Jones with Cork Lord Mayor, Cllr John Buttimer (l) and Jerry Buttimer TD (r). Epilepsy Ireland members with Deputy Lord Mayor of Dublin Clare Byrne at the EED coffee morning in Dublin. Thank You Roses for the Rose on Valentine’s Day. The 3rd annual European Epilepsy Day (EED) took place on February 11th, with awareness activities taking place all over the continent. Epilepsy Ireland chose to highlight the common myths and misunderstandings that still exist around epilepsy, while also highlighting our new name and promoting the “text-to-donate” fundraising initiative. The Epilepsy Knowledge & Attitudes survey (see Page 6) was a valuable tool in securing a huge amount of coverage in national newspapers, radio and TV as well as online. The Rose of Tralee Nicola McEvoy lent herself to the campaign by voicing one of our radio ads and by featuring in the launch photocall alongside five young members and their parents. Rick O’Shea voiced additional ads which were played over 400 times on national and local radio, highlighting the new text-to-donate campaign. Newspapers including the Irish Times, Irish Examiner, Irish Sun, Daily Mail, Irish Mirror, Sunday World and Metro all donated advertising space to the campaign totalling over €80,000. Other advertising took place on the DART and online. Dr Donal Fitzsimons, Regional Disability Services HSE and Marcella Corcoran Kennedy TD with Epilepsy Ireland’s Margaret Bassett on EED. The epilepsy.ie site received an overhaul, as did the Seizure Aware microsite. February 11th broke the site’s busiest day record and almost 4,000 people visited the site during the campaign. Epilepsy awareness videos were watched almost 2,000 times, new followers flocked to twitter and almost half a million people were “reached” on Facebook. A new Epilepsy Awareness poster was launched (see enclosed) and members are encouraged to display the poster in a public place, such as at your local pharmacy. The text campaign was also a success, with almost 1,500 texts received to date supporting epilepsy research. Events were held around the country for EED, including in Dublin, Cork, Dundalk and Tullamore. Overall, a very successful Spring 2013 for raising epilepsy awareness. European Epilepsy Day is a real team effort and we would sincerely like to thank: • Twins Hanna & Emma Boughton and their mum Tracy who were at the forefront of all our EED activities this year • Leeson Egan, Maria-Carty-Mole, Katie Kelly, Garry Murphy and Niamh Hegarty who featured in our EED awareness video • Our growing legion of media volunteers • Young members Conor Weldon, Sadbh Mechan, Josh Bollard and their parents who took part in the photoshoot. • Rick O’Shea, for his unending commitment to keeping epilepsy in the public spotlight • All the suppliers who waived or reduced their rates to make EED happen - HAVAS, Red Diamond Media, Amarach Research, Vizeum, What Box? Creative, Design By Lucia and Jane Curtin Communications • The Epilepsy Awareness Committee (see page 19) • The Rose of Tralee Nicola McEvoy and the Festival organisers • Everyone who supported the textappeal or who spread the message on February 11th 7 Freddie and his Epilepsy By John Verling, Tralee, Co Kerry “Until One Works” Freddie had EEGs, CAT scans, MRIs all showing a perfectly functioning brain. Eventually some slight seizure activity showed up on an EEG, the seizure activity type associated with generalised epilepsy and so the diagnosis became intractable, generalised epilepsy. Different antiepileptic drugs were tried, all to no avail or a least with only limited success. These AEDs take months to get into the system; you have to increase your dose slowly to a therapeutic level and if not successful, take months again to wean the patient off. Once I asked his neurologist how many drugs are we going to try? She pointed to a wallchart listing all the current ones and said ‘until one works’. John Verling is a writer and maker of radio documentaries and features. He is also a Dad to three children including Freddie (9) who has epilepsy. A Corkman, living in Kerry, John writes a weekly article at www. verlingsweek.com about dealing with everyday events and Freddie’s epilepsy. Nearly 40,000 people in Ireland have epilepsy in some form or other. That is a lot of people. Some are born with it; some acquire it through brain damage, in others it develops for no reason, usually in the teenage years. My son, Freddie, had his first seizure when he was only nine months old and he has been living with it ever since. That first night, a typical mid-November one, will always live in our memories. Our panic at not knowing what was happening, wishing it to stop, waiting for the doctor, all at 4am in the morning. The doctor, as did the hospital, put it down to febrile convulsions, a condition not unusual in babies when in a high temperature, but as he got older he started having more. Subsequent tests showed nothing unusual in his brain activity but yet every three or so months we’d be back in the 8 hospital. By then we’d been prescribed Diazepam to stop the seizure and Epilim to try prevent one, easing our fears a little but we knew something just wasn’t right. With any child you wait and see if they grow out of it… As the body and brain develops will they get stronger, putting such things behind them? As Freddie got older he didn’t, the seizures only got worse and more frequent. In typical bad luck, he had what is known as intractable epilepsy, one of the few who don’t respond to seizure medication and really have their life curtailed. His epilepsy was presenting as tonic clonic seizures, the full-blown fall to the ground, body shaking and all four limbs jerking uncontrollably, type of seizure. The worst kind. He could have them any time of the day or night, standing walking or sitting. They started happening as he was going to sleep or as he woke in the morning. School became impossible, as he’d keel over on running around or in great excitement. It wasn’t fair on him or the school to have to deal with it. In August 2011, his epilepsy took a turn for the worse. Freddie had developed clusters earlier in the year. Clustering is when you have a seizure, you then have another and another and another till the anti-seizure medication stops them. However, one evening in August they couldn’t be stopped, Freddie went into status epilepticus, a state that seizures don’t respond to the drugs, they just keep happening. It’s a very dangerous, life threatening stage. That evening and into the night the bad cluster continued…full tonic clonic seizures, about twenty-one in total. Freddie wouldn’t give up that night. Though he had to go into ICU at 8am, to have a very strong dose of an AED administered, he was awake within an hour. Drugged and doped, but ready for the world. By lunchtime, he was back on the ward eating plain chicken for lunch. At the time, we were trying the Modified Aitkins Diet for seizure control. No carbs, only fats and protein but again only with limited success, we stopped it that September. “We moved from Dingle to Tralee to be closer to the Hospital in emergencies. We moved house three times between September 2011 to June 2012” Epilepsy Takes Over The remainder of August, then into September was spent in and out of hospitals. Tralee General and CUH were only excellent to us. Freddie was weaned off Epilim and Tegretol was introduced beside the Topamax and Keppra, which he was already on. Combined with the Frisium, which he was also put on to try prevent nocturnal seizures, he now had four AEDs in his system. On advice from our neurologist, we moved from Dingle to Tralee, so as to be closer to Kerry General Hospital in emergencies. In the end, we moved house three times from September 2011 to June 2012. How my wife, Lisa, managed all this, I’ll never know. When he wasn’t in hospital by appointment, Freddie was there in a cluster. Almost weekly we were rushing in to hospital, now only five minutes down the road, usually with Freddie seizing in the back of the car. Lisa wasn’t taking this anymore, she knew there had to be some way out, some solution had to be found. Our paediatrician, Doctor Leahy, couldn’t believe that his epilepsy didn’t start somewhere, that some part of the brain wasn’t misfiring first. Find that, he believed and we maybe could find how to stop it. Lisa pushed for and with the great help of my friend Brian McNamara, we got video telemetry done on Freddie. Video telemetry is an EEG, done when in a seizure and videoed so better analysis can be done. The sensors are glued to the head and you’re wired to the EEG machine 24/7. In November 2011 the two took up residency in CUH waiting for some action. After a couple of failed attempts, they eventually captured Freddie in seizure. Nine times that night he performed for the camera. Nine times! If they couldn’t get anything from that what more could he do? epilepsy to frontal lobe epilepsy. She was smiling too, after six years we were finally getting somewhere. scan. He also had neuropsychological assessment, to determine where he is in his development. Despite the improvements, we were still regulars on the Cashel Ward at KGH. The seizures were still happening, as was the clustering. The staff looked after us with such care that even now I well up when thinking of it. They knew the drill and were always ready for us. Admit Freddie, settle him, get a line put in and on the third seizure give him Lorazepam. A big meeting was scheduled for late February. The results of all the diagnostics done by the Temple Street team were ready. Was surgery really an option? We knew this meeting was to be the biggest in our lives. Freddie’s future was dependent on it; we got the news we wanted. Freddie is a candidate for surgery but much needs to be done to prove it to a surgical team. This work is ongoing at the moment but for the first time in years we have real hope. The neurologist was hoping for surgery but more detailed analysis of his telemetry results, would have to be done. Then in January last year, she told us the news we’d been waiting for… Freddie “We knew this meeting was to be the biggest in our lives. Freddie’s future was dependent on it. Was surgery really an option?” was possibly a candidate for surgery. However, we needed to do more tests, to confirm that he was indeed suitable for surgery. A PET scan was to be the next neurological device to try catching the misfiring neurons in Freddie’s brain. Eventually, after much waiting and many, many phone calls, Freddie had the scan in October 2012, at the brand new unit in CUH. Ironically, after six months of waiting for the scan we actually had the results within two days. That scan was reported as clear… still no sign of the actual point of where the seizure starts... A Starting Point We were devastated but Lisa wasn’t giving up. More telemetry was done to confirm what had been discovered on previous scans. Surely we had a case? The next day Brian called me to say something had been found, a starting point. It looked like his seizures were misfiring from a faulty neuron in the frontal lobe. Almost at the same time as Brian was on the phone to me, Freddie’s neurologist was paying Lisa and Freddie a visit on the ward. She confirmed the findings and we had a new diagnosis, Freddie went from having generalised This January we were called for a consult with Dr Shahwan in Temple Street. Luckily Brian McNamara in CUH had sent him a DVD of Freddie’s case. Dr Shahwan loves scans, EEGs are his speciality. He reviewed Freddie’s case history in detail and wanted his own set of scans. So for January and February we travelled to Temple Street and Fred had yet more video telemetry and another PET Freddie is going back to school next week. Under the guidance of Cathy Madigan, Neuropsychologist at Temple Street, we are in a program of reintegration to normal living for Freddie. Trips to the beach, walks or shopping are back on, slowly but surely we’re beginning on a path to an ordinary life. The support of the Neurological team at Temple Street makes us feel we are not alone. One hell of a kid Now Fred is on Tegretol and Rivitrol; the Tegretol, at an increased dose, began to stop the clusters. In May last year, Freddie stopped having three seizures in an hour, the trigger for a trip to KGH. Freddie’s current cycle has him on a seizure every five days or so, but with reduced clustering. We tried adding Vimpat to his mix of drugs; it didn’t work though and after six weeks we took him off it. We tried Epanutin, but dropped it after six days, it made Freddie worse…now the recently added small daily dose of Rivitrol seems to be helping. Recently we had a sixteen day seizure free break... Our family is still living in Tralee and even though the hospital visits have decreased, one is always just around the corner. He still can’t be left alone, can’t really play outside, can’t lead the normal life of a kid, can’t do anything that could put him in danger. But he gets on with it, is full of fun and games, nothing fazes him. He doesn’t know it but Freddie is one hell of a kid. www.verlingsweek.com 9 International Journalism Award for Midlands 103 work and history of the organisation and what it is like to live with epilepsy. In their decision, the judges said the show made a significant contribution to the understanding of epilepsy. The Award is made annually since 2009 by the International Bureau for Epilepsy and the biopharmaceutical company UCB in print, broadcast and online categories. It is open to all journalists worldwide and is judged by an international panel of experts. It aims to raise awareness about epilepsy globally, recognising journalists who have excelled in reporting compelling and informed stories that engage the audience on what is an often misunderstood condition. Participants in ‘The Parish’ radio documentary with producer & presenter Kieran Feeney, mic in hand. Congratulations from Epilepsy Ireland to Kieran Feeney and all at Midlands 103fm, whose documentary on epilepsy ‘The Parish’ has scooped top honours at the 2012 International Excellence in Epilepsy Journalism Awards (Radio category). The programme was produced and presented by Kieran Feeney and focused on life with epilepsy in the Midlands. Epilepsy Ireland’s Community Resource Officer Margaret Bassett and a local members Ann Kinahan, Barbara Mitchell, Theresa Carter and Sarah Shorthall took part in the show which explored the This is the third time that an Irish production has won an award. In 2010 Niamh Maher, the producer of the RTE documentary “This is Me” was announced as the winner in the broadcast section. Birthe Tønseth was the 2011 winner in the broadcast category for her programme “Life with Epilepsy” also broadcast on RTÉ One. Other awards this year went to Scotland, Finland and Australia. Congratulations to Kieran, to Margaret and to all the Epilepsy Ireland members who took part in the documentary for all they have done to improve epilepsy awareness in the Midlands and now worldwide! Listen to the programme at http://bit.ly/14RmmYC Epilepsy Ireland National Conference 2013 Exploring Epilepsy – Health and Lifestyle Choices Tullamore Court Hotel, Tullamore, Co Offaly. Saturday 21st September For people with epilepsy, their families & carers and for professionals working with people with epilepsy. Keynote speaker: Dr. Peter Widdess-Walsh, Consultant Neurologist. Further details of speakers, workshops and exhibitors to be announced soon on epilepsy.ie and our Facebook page. Topics will include stress management, mindfulness, epilepsy & relationships, the ketogenic diet, epilepsy & memory, VNS & epilepsy surgery, specialist nurse appointments. Bookings: Special Early Bird rates: €20 for Epilepsy Ireland members / €30 for non-members. 10 To avail of the Early Bird rate, simply book your place before June 30th. Regular rates: €30 for Epilepsy Ireland members / €40 for nonmembers. Conference fee includes morning refreshments, lunch and conference pack. Reserve your place by calling us at 01 4557500 or visit the online store at www.epilepsy.ie Yay or Nay? Disclosing your epilepsy In every issue Maria Carty-Mole, professional ponderer, will debate a motion relevant to the world of living with epilepsy. In this issue, Maria contemplates one of the most frequently asked questions of all - should you mention your epilepsy in a job interview? This one shouldn’t even be a question to contemplate. Of course you can mention your epilepsy in an interview if you want to! It’s part of who you are, just like your favourite colour, and it should have no influence at all on whether or not you are going to be employed. Unfortunately that’s fantasy. If a potential employer has misconceptions about epilepsy, or lacks knowledge on it, he or she may discriminate against the condition. Despite the fact that epilepsy is quite common – over 37,000 people in Ireland have it – there can still be a sense of fear surrounding it. Epilepsy Ireland carried out a survey of 1,000 adults and released the results on European Epilepsy Day. They revealed that a shocking one in five people would not employ someone if they knew they had epilepsy. After all, it IS contagious...right? Surely you don’t want to work for that 20% of the population anyway. But most of us can’t afford to be so picky. Some feel that the stress of having to disclose their epilepsy can damage their interview performance. Therefore you may be tempted to go to an interview, praise your favourite colour and when it comes to epilepsy, stay quiet. But is it legal to do so? Where do you stand by law? Nobody likes getting sacked, and being taken to court is only exciting the first couple of times. Luckily, in an ordinary interview you are not legally obliged to volunteer the fact that you have epilepsy, and your potential employer is not allowed to ask you if you have it. This is because it comes under the title ‘disability’, which according to the Employment Equality Acts 1998-2011 is one of the nine grounds (along with age, race, religion and so on) on which you cannot be directly or indirectly discriminated. If you have a medical interrogation, that is when you have to tell. But medicals are usually post-offer anyway and if an offer has been made ‘subject to medical’, they can’t then take it back once they discover that you have epilepsy. Consequently, making a good impression in the job for a few days/weeks, proving ourselves to be a reliable and capable employee, and then mentioning it to the boss, is always a favourite tactic. This might work – if you don’t get seizures often. A couple of years ago I was having a complex partial seizure every three weeks or so and I chose to try this method. I didn’t mention it in the interview, and when I got the job I decided to plough my way through a single day, make friends with them all and then tell on day two. The medical ID bracelet was left at home, I was succeeding, I finally made it to 5:25pm… and then suddenly I woke up from a full tonic clonic. Damn, I was so close! My new colleagues were shocked, and all the bosses went on a First Aid course shortly afterwards. They didn’t sack me though! When they hear that you withheld such information some may feel that you were dishonest, and your relationship may get off to an unstable start. It may affect your ability to claim sick pay. If your epilepsy is active, then they’re going to find out eventually anyway, so it’s probably best for health and safety reasons that you explain to them face-to-face what should be done, and definitely if having a seizure in the work environment compromises your safety or the safety of others. Plus keeping it quiet does of course make it seem as if it is something of which you should be ashamed. If you present it casually, bursting with confidence, no big deal, then they’ll see it that way too. You can even show them support documentation from your medical team explaining how perfect you are for the job. But whether you do so in the interview or during your second week there…that’s your call. Join the conversation and vote Yay or Nay in the poll on our Facebook Page www.facebook.com/epilepsy.ie Yay or Nay…what do you say? For: “It always is a good idea. Companies cannot discriminate against conditions…by mentioning it as early as possible, they will make accommodations for sickness due to either seizures or stress.” Paul “I think you should mention epilepsy at job interviews. Why should you have to hide it?” Anon Against: “There is no reason to do so if you feel it may compromise your chances of getting a job offer. Do you think a diabetic should mention their condition at interview stage?” Ronan “The only time epilepsy should impact on getting a job would be if you were suffering them too regularly to be able to perform the job. I haven’t had anything for 5 years, so I wouldn’t be telling anyone.” Triona contact corner A mum of a 13 year old girl with epilepsy has been in touch and she and her child would like to link up with another parent & child around the same age for a general chat about school, and learning to deal with epilepsy & seizures Mum of a 6½ year old boy who has absence seizures, recommended treatment being Ethosuximide, would like to hear from other parents who may be able to provide insight into what to be aware of before starting this medication and the possible side effects. Contact Geraldine at 01 4557500 11 Generic Substitution in epilepsy – Accept No Substitute Anti-epileptic drugs – Example brands and generic versions Brand Name * Generic Name/ Active substance Example generic versions ¥ Lamictal Lamotrigine Larig, Lamoro, Lamotrigine Aurobindo Keppra Levetiracetam Levetiracetam Clonmel, Levetiracetam Aurobindo, Levetiracetam Bluefish Epilim Sodium Valproate Sodium Valproate, Valproat (not currently marketed) Neurontin Gabapentin Gabin, Neurostil, Gabitril, Gabapentin Teva Topamax Topiramate Topirama, Topit Tegretol Carbamazepine Gericarb (not currently marketed) Rivotril Clonazepam Clonazepam * This list is just a selection of AEDs and is not exhaustive ¥ Note that the list of generic versions is intended only as a sample of authorised generic versions and is subject to change over time. The Health (Pricing & Supply of Medical Goods) Bill will very soon become law, introducing a system of generic substitution. Despite an intensive campaign by Epilepsy Ireland, the Government has not agreed to make a specific exemption to exclude anti-epileptic drugs (AEDs). This article outlines again the main issues around generic substitution of AEDs and more importantly, outlines what you should now do in order to stay safe. More information can be found at www.epilepsy.ie What is Generic Substitution? Generic substitution is a system that will allow pharmacists to dispense a different version of a particular medicine, even when a specific brand has been prescribed. Brands v. Generics A branded drug is a drug that is or has been protected by a patent. It can be produced and sold only by the company holding the patent. A generic drug is one that is similar to the original, brand-name medicine, and contains the same active substances but it will have a different (but often similar) name. Generic versions of branded drugs can be made by other drug companies once the patent on the branded drug expires. The price of generics are usually lower and they may have different colours, flavours or non-active substances. They may also be a different shape, size and packaging. What will happen under the new system? in an otherwise avoidable breakthrough seizure. Switching from a brand to a generic AED is not recommended and switching between different generic versions presents even bigger problems. These safety concerns have been highlighted in studies and in many countries, substitution of AEDs is not allowed. Epilepsy Ireland has met with Minister Alex White and presented to the Joint Oireachtas Committee on Health, highlighting international practice, published evidence and expert opinion supporting an exemption in Ireland. However the Government has rejected our appeals. What happens next? The challenge now is to ensure that the Irish Medicines Board do not designate AEDs as interchangeable. Meanwhile, Epilepsy Ireland will work to educate people with epilepsy about staying safe while also working with doctors and pharmacists to ensure they understand the special case of AEDs. Unfortunately we have received many reports of AED substitution already taking place even before the Bill has been passed, in some cases with negative outcomes for the people concerned. For this reason, we urge you to follow the guide (on page 13) to make sure that you stay safe. Generic Substitution section at epilepsy.ie: http://bit.ly/VjgWl7 Dail Debate: http://bit.ly/132Xw5G The Irish Medicines Board (IMB) will be responsible for developing lists of medicines that are ‘interchangeable’. Only drugs that the IMB deems interchangeable can be legally substituted and substitution of a particular drug cannot take place until the IMB permit it. For drugs that are designated as interchangeable, pharmacists will be obliged to dispense the cheapest generic version of that drug that they have in stock on that particular day. The problem with generic substitution of AEDs For most classes of drugs (not including AEDs), generic substitution is considered safe. However, AEDs are different to other drugs in that they have a “narrow therapeutic range” and any variation in their manufacture and composition may result 12 Peter Murphy & Mike Glynn (Epilepsy Ireland) and Peter Widdess Walsh, Consultant Neurologist presented on the dangers of generic substitution of AEDs at the Joint Oireachtas Committee on Health in March Accept No Substitute – Your Guide to Staying Safe Step 1. Step 2. Step 3. Be informed At your doctor At your pharmacy See www.epilepsy.ie for all you need to know Insist that your prescriber writes your AED prescription using your regular Brand name, not the Generic name. Check your medications immediately to ensure that they are exactly the same as the ones you received last time. Insist that your prescriber handwrites “do not substitute” beside the name of your AEDs each time s/he writes your prescription. Unless your doctor/ nurse prescriber has prescribed you with an entirely new drug or changed your dosage, you should continue to receive the exact same medications every month. It may be helpful to keep last month’s packaging to help you compare. Remember that if you have followed step 2, your pharmacist can under no circumstances offer you a different version of your AED. Other recommendations: Inform your pharmacist about the dangers of substituting AEDs. Not every pharmacist will be fully aware of the situation and many people with epilepsy will not be as informed as you! Your input may protect the safety of someone else in your area who has epilepsy. If your pharmacist understands the issues and is providing you with good care and service, then return to the same pharmacy each month. Changing pharmacies regularly may increase the likelihood of your drugs being inappropriately substituted. These are the two crucial things you must do. Cut out the reminder card below and keep it in your wallet if you think you may not remember what to say. The law permits your prescriber (doctor or nurse prescriber) to write “do not substitute” on a prescription if substitution should not take place for clinical reasons. If both these steps are followed, then your pharmacist cannot legally substitute your drug. Please let us know if your pharmacist attempts to substitute your AEDs. Your memory aid Cut out the card (below, right) and keep it in your wallet for the next time you visit your prescriber. It may help you remember what you need to say. National Epilepsy Week – Public information evening Generic Substitution in Epilepsy: Accept No Substitute Thursday 23rd May Alexander Hotel, Fenian St/ Merrion Square, Dublin 2 6.30pm – 8pm Speakers: • Professor Norman Delanty, Director of the Epilepsy Programme, Beaumont Hospital Prof. Delanty will explain all you need to know about how your epilepsy medications work and why they should not be substituted. • Mike Glynn, Epilepsy Ireland CEO Mike will outline what the new legislation means and what you now need to do in order to stay safe. Followed by Questions & Answers session Light refreshments provided No charge to attend Numbers are limited so please let us know if you plan to attend by calling 01 4557500 or emailing info@epilepsy.ie. Cut out and keep in your wallet. Dear Prescriber, Please write my AED prescription using my regular Brand name. Please hand write “do not substitute” beside each AED on my prescription. www.epilepsy.ie Tel: 01 4557500 13 ‘falling’ by peter sirr Epilepsy. Grand mal. Petit mal. Tonicclonic. I had left my twenties before a neurologist put on paper the words I’d always known about but never confronted. The words in one sense were soothing because they told me that my fate was shared and inhabited its own little shelf in the great library of authoritative facts. To have something undiagnosed or undiagnosable is much more traumatic – as in the early years of my father’s illness, with their vague diagnoses and the neurological speculation that finally, if not definitely, settled on multiple sclerosis. With the certainty conveyed in my specialist’s letter came a new prescription and a series of lifestyle recommendations. ‘I know you literary types,’ the neurologist told me. ‘Out all night drinking in the Arts Club.’ I had never darkened the door of the Arts Club, but I got the picture. Yet for all the reassurance that came with the formal diagnosis of the condition I’d been living with for the previous twenty years, I still felt still oddly detached from it. I’m sure my detachment and incuriosity is bound up with my childhood experience of the medical system: I distrusted my own epilepsy as much as that first neurologist did. It may also have been an internalization of some residual shame or embarrassment at what was – not least because of centuries, even millennia, of misinformation – a little-understood condition. For years I directed a buried anger against it, but also against hospitals, the medical system. I still get angry when I think how few neurologists there are in this country: fewer than twenty-five. Epilepsy is easily treated, but a sufferer, even with private insurance, can wait up to two years for an appointment with a neurologist, nine months for an MRI scan, anything between two months and two years for an EEG. For someone who is just beginning to realize that they may have epilepsy, the medical provision available in Ireland is no better now than it was forty years ago when I began my own career of falling. The health system’s shortcomings apart, I certainly spent a good deal of my life acting as though my body and my emotions belonged to someone else – this is part of the comedy of maleness. But now information is everywhere, and suddenly I am wandering through thickets of data and lore, boning up on what happens during my absences. The 14 Part Two Peter Sirr is an Irish poet, freelance writer and part-time lecturer at Trinity College. This article is part two of Peter’s essay on his experiences of living with epilepsy, originally published in The Dublin Review, Issue 41, Winter 201011. Our thanks to the Dublin Review for allowing us to reprint it in Epilepsy News. most prolonged absence is the grand mal, now stripped of its linguistic melodrama and usually referred to as tonic-clonic seizure, with the stiffening and jerking of the limbs as sudden abnormal bursts of electrical activity pass through the brain. No one knows why these bursts occur. The advance warning that many experience is called the aura, and can include lightheadedness, dizziness and a strangely altered state of mind, as if consciousness has retreated into a cave and relinquished all claim on its bodily host. The outward drama of all these stages has tended to attract disproportionate interest, and often seemed clear evidence of some kind of possession. Depending on where you lived, the possession could be seen as sacred or demonic. Prophetic epileptics figure throughout history: Balaam the seer in the fourth book of the Pentateuch, Cassandra in the Oresteia, whose grim prophecies are accompanied by frothing at the mouth, convulsions and spitting blood. Herakleianosos, morbusherculeus, mal d’hercule – the Greeks were convinced that Hercules had epilepsy, hence ‘the sickness of Hercules’. Christianity in its turn intervened to muddy the picture. There is the famous incident in the New Testament where a distraught father brings his son, displaying the classic symptoms of epilepsy, to Jesus for healing. His disciples have tried their luck but failed. Jesus heals the boy by calling out the evil spirit within him who is clearly responsible for the attacks. Needless to say, this was not the best publicity for the disease, and led to the centuries-long habit of associating it with possession by demons – morbusdaemonicu was a popular medieval name for it. In his last painting, Raphael incorporated this New Testament story into his vision of the transfiguration of Christ on Mount Tabor. The lowerright-hand corner of the painting is taken up with the scantily clad boy in apparent mid-seizure, his arms stretched out and rigid, his eyes rolling back in his head, his anxious father grasping him from behind. On the face of it this seems an extraordinary thing for Raphael to do. What’s the connection? Why is this incident given such prominence? The two events seem, on first sight, to have nothing to do with each other. The epileptic boy, maybe, enacts symbolically the death and resurrection which Jesus will himself endure; and, perhaps to signal this connection, the boy is the only figure in the painting who looks at the transfigured Christ. Hercules, Caesar, Pope Pius IX, Joan of Arc, Flaubert, Dostoyevsky, Molière, Napoleon, Van Gogh, St Paul: it is traditional in the case of any infirmity to reach out into the world of celebrity to find famous fellowsufferers. Those of us who are marked out by the mal des prophètes must all, therefore, be exceptional. Some have tried to make a case for a link between epilepsy and spirituality; I find myself slumped over a 1970 paper, ‘Sudden religious conversions in temporal lobe epilepsy’. What about atheism and epilepsy, I wonder? Others argue for a link between epilepsy and creativity, but equally people will argue that there is a connection between certain kinds of mental illness and the artistic impulse. I’m slightly distrustful of these theories, which seem to medicalize creativity, treating it as some kind of condition. And yet, I can see some similarities in the behaviours produced by epilepsy and, in my own case, the writing of poetry. There’s often, in writing as I imagine in any kind of creativity, a sudden spurt of what feels like electrical energy followed by exhaustion, a kind of unexpected possession. The Greek root of ‘epilepsy’ means ‘to be seized, overwhelmed by surprise’, and this can very happily be applied to poetry. There is another sense in which epilepsy and poetry might be said to touch each other. Writing poems is a kind of withdrawal, a temporary absence from the world which mirrors the absence of falling. One is a neurological event without any issue; the body performs its dance and exits the stage into a feast of blankness. The other is a partly willed, partly unconscious removal of the self from its normal circuit; it is a strategic withdrawal with hope of a profitable return, a turning away in order to turn to something else, or to listen, or to place the mind where there is a possibility of some kind of fruitful accident. Poetry is, like any form of art, at some level an effort of self-completion, an attempt to compensate for the sense of absence. ‘The poet is someone who feasts at the same table as other people,’ Anne Carson has written. ‘But at a certain point he feels a lack. He is provoked by a perception of absence within what others regard as a full and satisfactory present. His response to this discrepancy is an act of poetic creation …’* An act, maybe, that returns the creator to the world. I embraced poetry, but at some level I still have the deepest distrust and dislike for the faller in me, as I had for the different kind of faller in my father. When he began to fall it was because his balance was suddenly skewed, the signals were confused. He had all his strength but his brain could no longer direct it and so he stumbled, and when he walked he found himself having to clutch walls to support himself. He also began to drive in a jagged, jerky way, so much so that one day an infuriated motorist behind us leapt out from his car at a red light and performed a citizen’s arrest on him, assuming he was drunk. And he kept on falling, deeper and deeper into himself. In the beginning I could walk with him by supporting him. He carried a walking stick but it had little practical value; it was more a signifier of infirmity to deflect assumptions of drunkenness. Eventually, he started to use a wheelchair. When the stairs were no longer an option, the sitting room was turned into a bedroom with a metal hospital bed – a horrible transformation, not because we cared about the room but because we knew that from now on things would only get worse. “I distrusted my own epilepsy as much as that first neurologist did. It may also have been an internalization of some residual shame or embarrassment at what was - not least because of centuries, even millennia, of misinformation - a littleunderstood condition” Eventually, my father ended up in hospital again, first the Meath and then the Adelaide. This was the hardest period, the last phase of the illness, when he had begun to drift away. He could no longer respond to us except with his eyes, which remained alert, intelligent, expressive. We would talk to him, tell him whatever news we had, and sit in the silence of the room. I can remember calling in on the way to college to sit and talk, really just to make some kind of companionable noise. When my first book came out, I brought in a copy to show him. Many of the poems were about him, or addressed to him, or just written out of the sadness at what had happened to him, at the sheer precariousness of life. I think he was beyond responding to news from the world at that point. What power did I think poetry had that it could lift him back towards us? I remember the final journey. We were at home and I was about to go into town to visit him. There was a row – the details of it are a mystery now – and because I was angry, rather than getting the bus as I usually did, I walked to the hospital. How many times have I cursed that decision? When I eventually walked through the door of the Adelaide I met the priest coming down the stairs. My father had just died. A few minutes earlier and I would have been with him. I still find it hard to accept that he could have gone without any of his family around him. Hospitals, of their nature, industrialize death; it is something that takes place in a remote, clinical space, in an unfamiliar part of the city. The place is, at least, alive inside my head. Many years later, when I lived in Christchurch Place, I used to pass through Peter Street, where the Adelaide was, and enjoy walking its brief length because I felt my father’s eyes on me from an upper window as I passed. Then one day when I turned into the street I saw that the hospital had been demolished. All that was left was the façade on the street side, a doorway and windows leading into nothingness. Diggers were busy excavating, and a crane swung its arm gently overhead. A hoarding announced the arrival of a new apartment complex. It was odd to think about people going about their ordinary lives in this new space with its ghosts of hope and suffering, its long corridors and busy machinery. ‘I’d almost pray some ache remain / like a flaw in the structure, something unappeasable / waiting in the fabric, between floors, in some / obstinate, secret room’, I wrote later; but the more powerful feeling was to wish the new building, the new lives, well: . . . let music roam the corridors, joy patrol the floors, St Valentine’s stubborn heart come floating from Whitefriar street to prevail, to undo injury, to lift my father from his bed, let him climb down the dull red brick, effortlessly, and run off with his life in his hands. *Anne Carson, Economy of the Unlost, Princeton University Press, 1999, p. 108. www.petersirr.com. 15 Get yourself connected – online epilepsy support By Deirdre-Anne Wynne-Robinson I registered because I was curious. I’d never made it to a face-to-face support group meeting because I don’t drive due to my epilepsy. I love that I can join the online support group from the comfort of my living room without having to organise childcare or transport. It was really easy to register. The link on the website makes it easy, and the instructions are simple to follow. The hardest thing was choosing a username. For most people remaining anonymous is important, so choosing a username can be fun. For me, I make a point of talking about epilepsy to people I meet, and I’ve gone public about my epilepsy, so I just decided to use my own name. Last October, Epilepsy Ireland launched the Epilepsy Online Support Group, providing an understanding space for people with epilepsy to talk openly about the condition and its impact, and learn from the experiences of others. Here, Online Support Group user Deirdre-Anne Wynne-Robinson shares her experience of using the new service. advice, though it’s a great place to learn more about epilepsy. We talk about things that people without epilepsy won’t understand, such as the difficulties of not being legally permitted to drive, the joy of being allowed drive eventually and the concerns of families and friends when we, the people with epilepsy, decide we want to undertake something that they consider too risky – for example going out to discos. Most young people with epilepsy can go to discos, they just have to take precautions. So many people think everyone with epilepsy is affected by lights and so discos are not safe. The groups discuss anything people logging in on the day choose. We talk about driving, generic substitution of medications, sleep issues and family issues. If we’ve had a bad time with lots of seizures we can rant, and we can support each other. The great thing is that the people in the chat room know what having epilepsy feels like and can celebrate the highs of not having seizures for a time, commiserate when a breakthrough seizure happens, and empathise when family and friends get I find the group is fun. It’s good to overprotective or won’t help out when we talk about epilepsy with others who know we need more support. understand. Many have gone through similar experiences before me, or are One doesn’t have to get personal, going through something I have gone because the groups are anonymous and through already. By sharing information one chooses how much to reveal. It’s up we can show that life with epilepsy is not to each person to choose what to say just manageable, it’s fulfilling. about themselves. The facilitators are on hand to ensure that rules of privacy are People can come in and discuss things respected. about which they are concerned, or The forum is not a place to complain about doctors or get specific medical can’t discuss with their families or friends. Some people in the group newly diagnosed. Both get different support from each other. The newbies get valuable information from the incumbents (can’t really call them oldies, now can I?), and the incumbents get self-confidence realising just how far they have come. Both groups share information on how to manage and live with epilepsy. Even small tips such as getting enough sleep and asking for help are valuable. For people who can’t travel easily, being online makes things much easier. The ability to talk to others anonymously is so freeing, especially for people who haven’t (yet) made the choice to tell their family, friends, colleagues and acquaintances about their epilepsy. If you’d like to join us and have a chat about your epilepsy, you can register at: http://support.epilepsy.ie. Upcoming Meetings: 14th May 11a.m. – 12:30p.m. 22nd May 7p.m. – 8:30p.m. 28th May 7p.m. – 8:30p.m. 7th June 11a.m. – 12:30 p.m. http://support.epilepsy.ie. 16 The Epilepsy Online Support Group Talking to your children about your epilepsy At a recent Epilepsy Ireland event in Dundalk for parents who have epilepsy, Mark Mulrooney, Senior Clinical Neuropsychologist from Beaumont Hospital and Sinead Murphy, Clinical Nurse Specialist, facilitated a very interesting session on discussing your epilepsy with your children. The following are some of the key points from the evening that may be helpful if you need to hold that conversation. It is good to be honest with your child about your epilepsy. child matures, further information can be explained to them. The child will know that something is wrong and you can talk to them in language that is easy for them to understand and appropriate for their age. The words used can be simple and clear. Sentences of not more than five words, and words of five letters is good practice for a younger child. Should you be protecting your child from your condition? Involve them in your epilepsy in a positive way. Children may be afraid of your epilepsy. If you communicate well with them, in an age appropriate way, and involve them in your epilepsy, it will alleviate their fears. If they see that you are comfortable with talking about the issue, they will trust that there is nothing to worry about. They will take the lead from you. Some parents give the children little tasks which relate to helping the parent manage their epilepsy. Others prepare their child by practicing what the child should do if the parent experiences a seizure. Children like to be involved in their parent’s lives. Children will pick up signs and will know where ‘something is wrong’ regardless of whether you tell them. They will pick up cues from their parents as to whether to be anxious or worried about something. Most of all, they want to be reassured that their parent is okay and they (the child) are safe and loved. Hiding your condition from your child does not allow the child to be part of the situation and become confident in the situation. Open and honest communication is the key. Staying relaxed when talking to your child It can be a challenge for a parent with epilepsy as some parents can’t drive their children places, or go out on trips as much as others. Some children may get anxious if they have witnessed a parent’s seizures before. Overall, it can be upsetting for parents if they find they are less involved than other parents. But Different children, different parents can create great quality time with their children even within the family approaches. home. The key point is to keep a relaxed It is best for parents to assess the age environment with them, talk to them at and maturity of the child to decide what language to use, for example, whether the non-pressurised times – for example in the bath, before bed and let them know use of the word ‘epilepsy’ will be helpful that you are relaxed and approachable for their child. As the parent knows their to talk about epilepsy, or just simply for own child best, different parents have communicating with them in general. different approaches. The key point is to ensure that the child understands what Older siblings is being explained to them. It is good to You can find out how your younger be aware not to overload the child with children might need to understand information – as much as they need to your epilepsy by asking your older know is enough at that time. When the siblings what they would ‘say to another child’ – often you can hear how a child understands things by using this approach, and they will often identify words and phrases for you that will help younger children to understand your condition. Children and Safety In some cases, depending on the circumstances and the age of the child, children can be trained to stay safe (for example by sitting in the buggy, by pressing a picture button of another family member on a phone with large keys). This can be discussed further with a health professional. If you have any questions about this topic, your health professionals will be able to offer advice. In addition, our Community Resource Officers often run talks and events for parents – contact us to see if there is one in your area. Please tell us about your experiences of discussing your epilepsy with your child, and what tips you would like to share with other parents - drop a short email to us at info@epilepsy.ie. Your suggestions may be published in the next issue of Epilepsy News. 17 Talking About Epilepsy - Take part in a new research study you and your child/children’s experiences of telling/not telling, or talking/not talking, to others (e.g. friends, teachers etc.) about epilepsy. To take part, children should be aged 6-15 years with a diagnosis of epilepsy (for longer than 6 months and with no other medical condition). Taking part involves doing in an interview at a time and location of your choice. Child interviews will be fun, including doing art and make collages together so that children can tell their story. Researchers at Dublin City University are currently inviting children with epilepsy and their parents to take part in a study entitled “talking about epilepsy”. Dr Veronica Lambert from the School of Nursing and Ailbhe Benson, PhD student are conducting the research and Epilepsy Ireland is an official collaborator on the study, which is funded by the Health Research Board. The study will examine you and your child/children’s experiences of living with epilepsy. In particular it will look at Through this study, we hope to learn more about the challenges (positive and negative) that face children living with epilepsy. This information can help us to tackle the negative challenges faced by children living with epilepsy in the future and ultimately help us to raise awareness about epilepsy in children. If you would like to take part, and/ or want to know more about the study, please contact Ailbhe at 087-3124218 or by e-mail: ailbhe. benson2@mail.dcu.ie. http://bit.ly/13OKqIi European Month of the Brain May 27th-28th Convention Centre, Dublin The European Commission has designated May 2013 the European Month of the Brain. Across Europe, this month is being devoted to raising awareness of neurological conditions and demonstrating the importance of brain research. This conference brings together policymakers, representatives from ministries, funding agencies, industry, patient organisations, researchers and health professionals to highlight why policy-makers across Europe should devise, or refine, national strategies on brain research and healthcare. European Forum on Epilepsy Research May 25th – 27th Convention Centre, Dublin International Events See page 2 for more details As Ireland holds the Presidency of the EU during Month of the Brain, a number of international events are taking place in Dublin to mark the month. European Patients Forum: Annual Conference May 23rd Healthy brain: healthy Europe “A new horizon for brain research and health care” 18 This event will attract up to 150 delegates from patient groups across the continent. It is hoped that the report from this event will feed into the ‘Healthy Brain: Healthy Europe’. Did You Know? • Brain-related disorders affect at least one in every people during their lifetime. • Treating brain disorders costs almost €800 billion in Europe every year – more than cancer, diabetes and cardiovascular disease combined. Brain Month – Ireland The Neurological Alliance of Ireland (NAI) and its member groups including Epilepsy Ireland are holding a series of Wellness Days during European Month of the Brain aimed at promoting wellbeing when living with a neurological condition. These days are for both people with neurological conditions and their families. They will take place in: • Kilkenny: Wed 8th May The Neurological Alliance of Ireland’s Red Card for Neurological Care will highlight during European Month of the Brain, the deficits in care that still exist in Ireland for people with neurological conditions. See www.nai.ie for more information, or contact your local Epilepsy Ireland office. • Limerick: Wed 15th May • Cork: Fri 17th May • Galway: Wed 22nd May NAI Brain Month page: http://bit.ly/ZrcFfD New Director of Services Wendy joined Epilepsy Ireland in January and will be responsible for the management and development of all of Epilepsy Ireland’s services to people with epilepsy and health professionals. Epilepsy Ireland is delighted to welcome Wendy Crampton as our new Director of Services. Before taking up her new role, Wendy has worked in the voluntary sector in Dublin for 12 years, mainly focusing on social inclusion and equality issues such as homelessness, addiction, domestic violence & gender equality and Traveller inclusion. Her posts have included working in the areas of training, research, policy, community development and management of residential and outreach services. She has also headed up human resources and volunteer management functions and has recently worked on best practice and quality approaches to service delivery. Wendy holds a BA in psychology, a Post Graduate Diploma in Business Studies, an MA in Development Studies and a Post Graduate Diploma in Psychotherapy. She is passionate about inclusion and equality and is delighted to be working in the disability sector and with people with epilepsy. Epilepsy Awareness Committee Raising awareness of epilepsy is one of Epilepsy Ireland’s key objectives. Last year, the Epilepsy Awareness Committee was established to lead on planning and implementing awareness activities and to advise the Board on issues around awareness. Supported by staff members Peter Murphy and Paul Sharkey, the group meets regularly and has played a key role in the recent rebranding and on activities such as European Epilepsy Day and the generic substitution campaign. We’re delighted to introduce you to the group. Cathy Grieve (Chair) Cathy is a former senior editor with BBC News and currently runs her own media production company, Red Diamond Media. Five years ago, she had her first seizure while boarding a flight at Dublin airport. “It has changed the way I live my life. I am now much more educated on the condition and feel I can use my media skills to communicate and educate people about it”, she says. Eoin Kernan (Vice-Chair) Having been diagnosed with epilepsy at 20 years of age, Eoin now works with Epilepsy Ireland to help support others who have been diagnosed at a similar age. He works in arts marketing, freelance TV production and as radio presenter. His philosophy is ‘There’s life out there to be lived, so just get out and live it!’ Rachel Ashe Rachel has been a long-time Epilepsy Ireland fundraising and media volunteer, highlighting her epilepsy on radio, TV and in the press. In 2009, she set up the “Epilepsy Ireland” Facebook Group in order to talk to other people who have epilepsy, to share experiences and to raise awareness. Rachel brings her professional marketing skills to the Awareness group. Tony Caravousanos Tony is Client Service Director at the Havas Worldwide Dublin advertising agency. He has been instrumental in Epilepsy Ireland’s European Epilepsy Day advertising campaigns for the past three years. “It’s vital that Epilepsy Ireland has a strong voice in the community to deliver greater understanding of the condition in Ireland”, says Tony. Audrey Muddiman Audrey has been active in Epilepsy Ireland for several years and currently serves on the Board. Previously, Audrey was a member of Epilepsy Ireland’s Group on Driving and Epilepsy. Audrey has worked as a journalist and has been the subject of many media interviews where she discussed her epilepsy. Rick O’Shea Rick is the presenter of the afternoon show on 2FM and one of Ireland’s leading tweeters. His epilepsy diagnosis came at the age of 16. In 2006, Rick became a patron of Epilepsy Ireland and since then has worked tirelessly to improve public understanding of epilepsy. Last year Rick won Celebrity Mastermind on TV3, representing Epilepsy Ireland. Carol Saarsteiner Carol’s daughter Nikki was diagnosed with epilepsy 2003, and since then raising awareness about the condition has become a huge priority for her. Carol currently serves on the Board of Epilepsy Ireland and has played a key role in some of the charity’s fundraising events and advocacy campaigns. 19 UPCOMING EVENTS Eurovision For Epilepsy Saturday May 11th Vanilla Nightclub, Donnybrook, Dublin Doors open: 7.30pm Tickets: €15 Brainteaser Quiz Night Capture the excitement surrounding Eurovision, this unique event promises to be a night of fun, music and entertainment incorporating the best Eurovision music and Ireland’s biggest up and coming acts along with some surprise special guests. For more info or to reserve tickets, email eurovisionforepilepsy@gmail.com or call us at 01 4557500. A huge thank you to Ciara Bardin for all the time and energy she has put into organising this event. Looking forward to a great night! Barrack Hill Ball Roll 2013 August 5th 2013, Cobh, Co Cork The Barrack Hill Ball Roll is a lottery like no other, featuring thousands of coloured numbered balls bouncing down the steepest hill in Cobh. An afternoon packed full of family entertainment is promised. Epilepsy Ireland is delighted to again be one of the charities to benefit from the event. You can show your support by buying or helping to sell some of the 6,000 balls that are up for grabs. Lines cost just €2. For more info, contact Bernard in our Cork Office at 021 4274774. Thank you Thank You To… • Caroline Chadwick who raised €100 by running a raffle and lipstick amnesty & makeover event in The Steering Wheel Pub, Clondalkin. • The staff and students from 5th & 6th year in St. Gerard’s Senior School, Bray who ran their Annual Christmas Bazaar to raise funds for charity. We were delighted to receive €600 from their efforts. • The Bionic Rats, Graham Birney, Derek Clabby & friends, for raising €2,117 - the proceeds of a gig that that took place in the Turks Head, Dublin in December on the 10th anniversary of Damien Clabby’s passing. • Brian Bless & all those involved in Corpus Christi Boxing Club who raised a fantastic €1,000 by organising & participating in Limerick Charity Boxing last November. • Collette Cooke School of Irish Dancing who raised €180 through a raffle at their Annual Feis. • Angela Flannery who organised a Halloween fancy dress in her son Shane’s crèche Little Steps in Ballinrobe & raised €200. • Laoise & Catherine Newman from Skibbereen who held a fundraising raffle, a coffee morning and sold Brainwave calendars raising €905. • Mark O’Gorman from Dundalk who undertook a sponsored shave in November & raised €350. • Elaine Byrne who sold €236 worth of our Christmas cards last year. • The Tullamore Lions Club for their recent €300 donation 20 • Ger Sullivan who raised €210 participating in Movember. Thank you Running for Epilepsy Thank you to all our runners who took part in the Dublin City Marathon last year - Mark Loughnane, Mick Quinn, Dave McMahon, Colum Carter & Ray Cullen. Thanks also to Mihai Cadar who took part in the Frank Duffy run and Ronan Weldon (pictured) who completed his first ever triathlon at the TriLaois this year. Collectively, over €5,000 was raised through their outstanding efforts. A Christmas Carol Organised by the bar’s fundraising committee led by Maria McClearnon (pictured with Epilepsy Ireland’s Noreen O’Donnell) and supported by her crew, the night raised a fantastic €846.80. Thank you to everyone involved for choosing Epilepsy Ireland as their charity. Marie’s birthday donation St Valentine’s Roses A huge thank you to all the volunteers without whom Valentine’s Rose Week simply wouldn’t be possible. Pictured are just two of our committed crew - Jean Morrissey & Sandra Maher, braving the cold outside their local Centra in Fethard. Thanks also to all who participated in the launch of our text donation service & to those who texted in. Marie Murphy from Castleblaney recently celebrated a very special birthday and donated €1,100 to us raised at her celebrations. Pictured are Marie’s son Michael who arrived home unexpectedly from Australia, Marie’s husband Eugene, the birthday girl herself, daughter Jennifer and son Paul. Thank you very much to Marie, and to all her family and friends who supported the night. Champions of Chapelizod CD Launch in Cork A great night of singing and ‘craic’ was had by the large crowd who turned up for the launch of Dan O Leary’s CD on 10th April. Dan sings ‘Old Time Favourites’, accompanied by Mr. Walter O Leary on the album. Many thanks to the sponsors – An Spailpin Fanach, B Condon Mechanical and The Flying Enterprise. Epilepsy Ireland is one of two beneficiaries from the proceeds and we would like to say a special thank you to all the O’Leary Family who have been great supporters of our organisation over the years. The CD is available from our Cork office and costs just €10. Wonderful birthday gifts Covidien Donate to Epilepsy Thanks to Emma Farrell & her friends in Dublin Gospel Choir who sang their hearts out last Christmas at the St. Stephen’s Green Shopping Centre and raised a brilliant €750. Fane Bar’s fantastic fundraising An All Star Tribute Night was held for Epilepsy Ireland in the Fane Bar in Dundalk recently. Thank you to all employees in Covidien, Tullamore for their recent generous donation of €2,600 provided through Covidien Cares, the company’s philanthropy programme. Pictured are Orla Bourke (Covidien), Dermot Byrne (Covidien and Epilepsy Ireland volunteer) and Margaret Bassett (Epilepsy Ireland). Thank you to David Doran for nominating us as the beneficiary charity of the Chapelizod Derby charity football match which took place last year to raise funds for epilepsy and also to settle a long running debate - who really are the Champions of Chapelizod?! The match was followed by a sports auction in the Mullingar House. Our thanks to Aaron Lynch, Conor Lyons and friends for all the hard work they have put into organising a hugely successful event which raised a phenomenal €9,000. A very special thank you from all at Epilepsy Ireland to three very generous young stars who decided to donate their birthday money to Epilepsy Ireland - Rachel & Stephen Reilly (pictured) from Mayo aged 8 and Aisling Baragry from Dublin who celebrated her 11th birthday in February. We’re very grateful and proud of you! 21 Regional News & Events East region (Co’s Dublin, Kildare, Wicklow) Contact: Ina Murphy, Community Resource Officer, Epilepsy Ireland, 249 Crumlin Road, Dublin 12. Tel: 01 – 4557500. Email: imurphy@ epilepsy.ie. Office Hours: Mon & Tue, 10am - 6pm; Thur 1.30pm - 6pm Upcoming Events Dublin: Family & Friends Group Head Office, 249 Crumlin Road Saturday, May 4th 11am – 1pm Support group for parents, family members, carers & friends of adults & adult children who experience seizures. Dublin: Family Fun Day Farmleigh House, Phoenix Park Saturday, May 11th 2pm - 5pm Bring a picnic, join in the fun and games. Light refreshments will be provided. Dublin: Coffee Morning Head Office, 249 Crumlin Road Monday, May 20th 11.30am – 1.30pm Coffee Morning to celebrate National Epilepsy Week. Phone 01 4557500 to confirm your attendance. Dublin: Men’s and Women’s Support Group Head Office, 249 Crumlin Road Tuesday, May 28th and Tuesday June 25th 8.00pm Naas: Outreach Service Naas Health Centre, St. Mary’s Hospital Monday, June 10th 11am – 4pm Please contact Ina to make an appointment. 22 Newbridge: Outreach Service Newbridge Health Centre Monday, June 24th 11am – 5pm Please contact Ina to make an appointment. South East region (Co’s Kilkenny, Carlow, Waterford, Wexford and South Tipperary) Contact: Joan Ryan, Community Resource Officer, Epilepsy Ireland, c/o HSE, St. Joseph’s, Waterford Rd, Kilkenny. Tel: 0567789904. Email: jryan@epilepsy.ie. Office Hours: Mon, Tue, Wed 10am 5.30pm; Thur 10am - 2pm Upcoming Events Kilkenny: Wellness Day Wednesday, May 8th Lyrath Hotel Supported by the Neurological Alliance of Ireland. Registration from 9.30am. Programme runs from 10.30am - 4pm. See www.nai.ie for more. Kilkenny: Open Day at New Epilepsy Ireland Office Monday, May 20th St Joseph’s, Waterford Road. Join us to mark National Epilepsy Week, anytime between 11am and 4pm Enniscorthy: Outreach and Support Group Tuesday, May 21st Supported Employment Office (downstairs), IFA Centre, Mill Park Road, Enniscorthy Outreach is by appointment only. Please contact Joan to arrange. Support Group from 3.30pm – 5.00pm Waterford: Epilepsy Awareness Presentation Wednesday, May 22nd Venue: to be confirmed 11am - 12.30pm Waterford: Support Group Wednesday, May 22nd Cheshire Home, John’s Hill, Waterford 7.30pm This is an open meeting for people with epilepsy, their family and friends. All newcomers are welcome. Contact Joan for further info. Cork Address: Epilepsy Ireland, 35 Washington Street, Cork. Tel: 021 4274774 South Lee & West Cork: Niamh Jones, Community Resource Officer. Email: njones@ epilepsy.ie. Office Hours: Mon & Tue 8am- 4.30pm; Wed & Thur 8am – 1pm North Lee & North Cork: Mary Lawlor, Community Resource Officer. Email: mlawlor@epilepsy.ie. Office Hours: Tue, Wed, Fri 9.30am -5.30pm; Thur 1.30pm 5.30pm. Upcoming Events Cork: Wellness Day Friday, May 17th Cork: The Parents support group and children with epilepsy paid a visit to the City Hall to meet with the Lord Mayor, Cllr. John Buttimer in March. The group was welcomed into Council Chambers by the Lord Mayor who spoke about the history of City Hall and previous Lord Mayors and took the group on a most interesting tour. Many thanks to Cllr. Buttimer and to all the staff who looked after us all so well on the night. Oriel House, Ballincollig, Co Cork Registration from 10am Supported by the Neurological Alliance of Ireland. Further details to be confirmed, check www.epilepsy.ie Cork: Epilepsy Information Stand Cork University Hospital Wednesday, May 22nd 10am-4pm Cork: Support Group for parents of children with epilepsy Bishopstown GAA Club Wednesday May 22nd 7.30pm Kerry Contact: Kathryn Foley, Community Resource Officer, Epilepsy Ireland, 9/10 The Paddocks. Ballydowney, Killarney, Co. Kerry. Tel: 064 6630301. Email: kfoley@ epilepsy.ie . Office Hours: MonFri 9am - 2.30pm. Midlands: Pictured at the recent Athlone Institute of Technology Health Promotion Day are Margaret Bassett and the family of the late Andrew Claxton. The day was organised by the Student Union and classmates of former student Andrew in his memory. Epilepsy Ireland was also nominated as the beneficiary of the students’ fundraising efforts on the day and since then, awareness presentations have been delivered to staff and students at the College. Upcoming Events Killarney: Information Morning for people with epilepsy Epilepsy Ireland Office, Killarney Monday, May 20th, 10.30am Killarney: Information Morning for parents of children with epilepsy Tuesday, May 21st Epilepsy Ireland Office, Killarney 10.30am Killarney: Ladies information meeting Epilepsy Ireland Office, Killarney, Friday, June 21st, 11am Midlands (Co’s Offaly, Laois, Westmeath & Longford) Contact: Margaret Bassett, Community Resource Officer, Epilepsy Ireland, c/o Carers Association, Market Square, Midlands: Pictured at the Epilepsy Information Evening sponsored by Covidien in Tullamore on 26th March are Wendy Crampton, Epilepsy Ireland Director of Services; Sinead Murphy Epilepsy Specialist Nurse; Edel Mc Cormack, Mindfulness Instructor; Margaret Bassett, Epilepsy Ireland CRO; Ann Kinahan & Ann Caduff, Epilepsy Ireland volunteers. Tullamore, Co. Offaly. Tel: 057 9346790. Email: mbassett@ epilepsy.ie. Office Hours: Mon, Tue, Wed & Fri 10am - 2.30pm; Thur 9am - 5pm. Upcoming Events Tullamore: Parents Support Group Offaly Centre for Independent Living, Clonminch Rd, Tullamore Thursday, May 16th, 7pm North west (Co’s Donegal, Sligo & Leitrim) Contact: Agnes Mooney, Community Resource Officer, Epilepsy Ireland, Grand Central Complex, Floor 2B, Canal Road, Letterkenny, Co Donegal. Tel: 074 9168725. Sligo Office: Model & Niland Arts Gallery, The Mall, Sligo. Tel: 071 9141858. Email: amooney@ epilepsy.ie. Office Hours: Mon, Tue, Wed 9am - 5pm; Thur 9am - 1pm. Upcoming Events Sligo: Information Evening Clarion Hotel, Clarion Road. North East: Staff at the National Learning Network in Dundalk receive their Certificates in Epilepsy Awareness and the Administration of Buccal Midazolam. Tuesday, May 28th, 7.30pm Guest speaker: Sinead Murphy, Community Epilepsy Specialist Nurse. Sligo: Outreach Service Wednesday, May 29th 9.30am to 12.30pm Please contact Agnes to make an appointment. Western region (Co’s Galway, Mayo, Roscommon) Contact: Evelyn Monson-Kirby, Epilepsy Ireland, Westside Resource Centre, Seamus Quirke Rd, Westside, Galway, Tel: 091587640. Email: emonsonkirby@ epilepsy.ie Office Hours: Tue, Wed & Thur 9am - 5pm; Fri 9am - 1pm Upcoming Events Galway: Coffee & Information Session Westside Resource Centre, Seamus Quirke Road. Monday, May 20th 2pm - 4pm Session will be facilitated by Teresa Leahy, Neurology Nurse Specialist, UHG & Evelyn Monson Kirby, CRO. Galway: Wellness Day Wednesday May 22nd For details contact Evelyn mid-west region (Co’s Limerick, Clare & North Tipperary) Contact: Anna Kelly, Community Resource Officer, Epilepsy Ireland, Social Service Centre. Henry St. Limerick. Tel: 061 – 313773. Email: akelly@ epilepsy.ie. Office Hours: Mon 9.30am - 5pm; Wed 9.30am 5.30pm; Thur 12.30pm - 5pm; Fri 11.30am - 4pm. Upcoming Events Limerick: Anxiety & Stress Management Kilmurray Lodge Hotel, Castletroy, Limerick Saturday, May 4th Registration from 9.15am Course Facilitator: Anne Buckley, RN, RM DIP HC, Mgt, MISMA Cost per person €5.00 includes tea/ coffee & refreshments For further details, contact Anna. north east region (Co’s Louth, Meath, Cavan, Monaghan) Contact: Noreen O’Donnell, Community Resource Officer, Epilepsy Ireland, Unit 1a Partnership Court, Park Street, Dundalk, Co Louth. Tel: 042 – 9337585 Email: nodonnell@ epilepsy.ie. Office Hours: Mon, Tue & Wed 9am - 6pm. 23 ♦ ♦ ♦ ♦ ♦ ♦