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4 Steps understand the reality Keeping it in the family: Funny man Russell Howard, whose younger brother Daniel has epilepsy, shares his family’s experiences on and off the stage. Another way Plain sailing See how diet Why the right could make a environment is difference essential Arpad Nagy-Bagoly nycpe

Photo: pete dadds 2 · june 2010 An Advertising insert by Mediaplanet Challenges

Epilepsy is commonplace but still too often misunderstood. Scientific research and development of treatment is key but so too is raised awareness and a lack of stigma - attitudes to We recommend Not held back epilepsy must be based on fact not fiction. Russell, Daniel and Kerry Howard share their stories on dealing with epilepsy as a Page 14 family. Get the facts - know the truth “My brother’s managed to turn something that his week is National perform at their best. was really bad in my life Epilepsy Week. Around into something that is half a million people in A need for adaptation good and out there.” the UK have epilepsy. Epilepsy can affect anyone, of It is a complex, serious 3 any age and from any walk of neurological condition and chanc- life. Many people have epilepsy esT are you will know someone who from childhood and we investigate has it. how families cope, as well as look- Despite this, awareness of epi- Sharon Wood General Secretary ing at a special diet that can treat lepsy among the public is low and it The Joint Epilepsy Council difficult-to-control epilepsy in chil- is not a priority for the health serv- dren. An aging population also ice. A 2007 report by the All-Party safely day-to-day. Comedian Rus- means that an increasing number We make our readers succeed! Parliamentary Group on Epilepsy sell Howard also gives a personal of older people are developing epi- concluded that poor health servic- account of growing up with his lepsy – we take a look at the unique epilepsy, 2nd edition, june 2010 es lead to 400 avoidable deaths and brother, Dan, who has epilepsy. challenges this presents and how Country Manager: Willem De Geer Editorial Manager: Danielle Stagg £189m wasted, in alone, the health service needs to adapt. Business Developer: Chris Emberson every year. A good quality of life We also look at what the future Half of all children with epi- holds for the next generation of Responsible for this issue A group effort 2 Project Manager: Hannah Butler lepsy underachieve at school. people with epilepsy, including the Phone: 0207 665 4414 1 The Joint Epilepsy Council of The results of a survey of teenagers, latest research and innovations in E-mail: [email protected] the UK and Ireland (JEC) rep- announced this week by Epilepsy diagnosis and treatment. Distributed with: The Guardian, resents 24 epilepsy charities. Mem- Action, reveal that while 72 per cent June 2010 bers of the JEC have contributed to believe their epilepsy affects their Print: Guardian Print Centre this supplement and we hope it will school work, only 39 per cent feel Mediaplanet contact information: Phone: 0207 665 4400 raise awareness of this often over- well supported at school. Fax: 0207 665 4419 looked condition. This supplement assesses the im- E-mail: [email protected] It gives an insight into living portance of education and life skills with epilepsy, including advice on for people with epilepsy, and how how best to manage the condition can they be helped to achieve and

‘Once in a while something happens to me Ways we can support you which really information scares other e-newsletter people’ forum A full life for helpline training everyone affected management by epilepsy research expert care Concerned about epilepsy? For a free copy of our magazine Are you or someone close to , or to find out you experiencing , Epilepsy Review more about any of the above, newly diagnosed or needing have a look at the website or call some support? We are here to help. our helpline, as below.

www.epilepsysociety.org.uk Helpline: 01494 601 400 registered charity 206186 Mon-Fri 10am-4pm national call rate Discover ‘exemplary’ care at St. Elizabeth’s

St Elizabeth’s Special School has this month behaviour and enriched self-esteem. been judged as “outstanding” by Ofsted following its recent inspection. The School One parent commented “I have nothing but near Bishops Stortford in Hertfordshire, is praise for the staff throughout the School. registered for up to 68 residential pupils and My child’s well-being and achievement is 12 day placements, (aged 5 - 19), for the 38 paramount and their positive support of us as term-time weeks of the year. School Principal a family is priceless”. Another parent reported Brian Sainsbury says “St Elizabeth’s provides “My son has only been at St Elizabeth’s since an excellent standard of care and support September and he is already like a different that helps young people in their educational, child, so much calmer and more fun to be personal, social and emotional development with”. and we are delighted at this validation of the quality of our services”. St Elizabeth’s Centre is part of a charity administered by the English Province of The School is part of St Elizabeth’s Centre, the Daughters of the Cross of Liège. Chief (which includes a specialist FE College Executive, James Connolly, adds “Ofsted and nearby adult Residential Care Home also graded the School as “outstanding” in with nursing), and has a long established the promotion of equality and diversity. We reputation for its expertise in epilepsy, but aspire to be a centre of excellence based staff learning and experience also equip the on Christian ethos of compassion, respect School to serve a wider range of complex and esteem for the unique value of each neurological conditions. individual, regardless of religion or race. The basic aim of all our services is to help enable The School is a regional and national centre especially vulnerable individuals to live life to of expertise in supporting and educating the full and achieve at their highest possible young people who have moderate or severe level. This excellent Ofsted report is great learning difficulties (MLD/SLD) or profound recognition for the efforts of our school staff and multiple learning difficulties (PMLD) or in working towards these objectives”. other neurological conditions which may have been caused or complicated by epilepsy, often with other associated disabilities. Pupils are often described with a range of difficulties including autistic spectrum conditions (ASC) and associated attention deficit hyperactivity disorder (ADHD) with language and communication needs or difficult to manage behaviours.

Ofsted concluded that medical care is “outstanding”; pastoral care “exemplary”; arrangements for maintaining contact with families remains “excellent” and described boarding accommodation as “pleasant, comfortable and safe”. The extensive health For more information, or a brochure, please and therapy resources are a particular feature contact the School Admissions O cer: of the service. Ofsted also praised the range Tel: 01279 844270 of activities enjoyed by young people and or email: [email protected] the motivation given towards improved or see our website at: www.stelizabeths.org.uk 4 · june 2010 An Advertising insert by Mediaplanet inspiration

Question: How can living with epilepsy be best managed to ensure a life enjoyed to the full? Answer: From making use of modern technology to keeping those around you informed, there is much that can be done to protect people with epilepsy from harm. How to live your best life

including injury, and epilepsy, the risk of SUDEP will vary, says change Sudden Unexpected Death in Epilepsy Professor Brown: “This is why it is impor- ■■“Until recently few of us will have (SUDEP), points out Professor Stephen tant to understand your own type of epi- heard of anyone dying because of epi- Brown, consultant neuropsychiatrist, lepsy and how best to manage it.” lepsy - but national statistics reveal the Honorary Professor of Developmental There are many solutions – from main- shocking figure of more than 1000 people Neuropsychiatry at Peninsula Medical taining communication and decreasing per year in the UK dying because of epi- School and a Epilepsy Bereaved scientific stigma to employing the solutions such lepsy. Worse, good evidence suggests that advisor. as the iPhone epilepsy diary application 42 per cent of these deaths would be pre- “SUDEP is uncommon, but may affect ”Up to 70 to the new generation of sensitive alarms. vented by better medical care and treat- about 500 people with epilepsy in the UK per cent The most effective way of reducing risk ment,” says Professor Mark Richardson, each year – and current research suggests of people is to achieve complete control of seizures, Paul Getty III Chair of Professor of Epilep- that some may be more at risk than oth- diagnosed Prof Brown points out. “Up to 70 per cent sy, director of the Institute of Epileptolo- ers,” he says. “Risk factors include young of people diagnosed with epilepsy will gy, Institute of Psychiatry King’s College adults, generalised tonic-clonic seizures, with epilepsy not have seizures as long as medication and scientific advisor to Epilepsy seizures at night / whilst sleeping; abrupt will not have is prescribed and taken correctly. Having Bereaved. and frequent changes in medication and seizures access to a specialist, receiving good care people whose epilepsy is not well control- as long as and support and having access to infor- Why understanding is key led.” medication mation to help informed decision-mak- “There have been major efforts to educate is prescribed ing are all important in achieving free- healthcare professionals about epilepsy Find the right management tech- dom from seizures”. and comprehensive treatment guidelines nique for you and taken have been produced - but needless deaths Good management and full awareness correctly.” continue,” says Prof Richardson. is key – for the person with epilepsy and Professor People who continue to have seizures their friends and family to colleagues. Stephen Brown emily davies are more susceptible to potential risks Just as there are many different types of [email protected]

Who do you want to be? While it may sound like a simple question, to the people we care for, it’s the start of an independent life; making the world we live in a more accessible place – whether its exploring and experiencing the fun of learning, or embracing the ambition to live and work within and as part of a community. As the UK’s largest provider of care, education, assessment, treatment and life skill development for people aged 16 upwards with complex epilepsy, physical and learning disabilities and other neurological conditions, our specialist services are tailored to individual needs; ensuring each person has the chance to become exactly who they want to be. Finding the right services, support and environment for your child or family member can be daunting. Which is why we encourage you to speak and meet with our dedicated liaison team. Contact us on 01565 640 002 or email: [email protected].

Progressive, enabling, and dedicated to improving the life and experiences of people with complex needs.

www.davidlewis.org.uk A progressive, enabling, organisation dedicated to improving the life and experiences of people with complex needs. Registered Charity Number 1000392 An Advertising insert by Mediaplanet june 2010 · 5 inspiration 7 EXPERT TIPS ON tECNOLOGICAL ASSISTANCE

For many carers their first so- 1 lution was to use a simple ba- by alarm to listen for a tonic/clonic seizure. While many still do, there are now smarter, specialist devices. Modern electronic epilepsy 2 monitors sound an alarm if movement happens too fast and for too long; some offer an integral ra- dio solution with a self-checking capability along with additional sensing for sound, breathing, uri- nation, vomit or collapsing For sound, look for a system 3 that responds to the sharp sound bursts associated with a spasm while filtering out back- ground noise. For urination note that plastic 4 sensing sheets can cause false alarms and are uncomfortable. Look for cotton sensing sheets which offer comfort, reliable detec- tion and can be used over pillows to detect vomit or excess saliva. Consider systems that detect 5 any changes in breathing. A pressure mat sets an alarm 6 if the user leaves the bed; some only do so if the bed is vacant for too long. little by little Consider fall detectors which Good condition management 7 means epilepsy doesn’t have raise an alarm should the to stop young people living wearer drop. SOURCE: David Godfrey, iTs De- life to the full. signs Photo: NYCPE

Are your clients with learning disabilities and epilepsy receiving the personalised treatment, care and support they need to achieve their full potential?

Night-time and day-time Do you know what it feels like to have an assurance for carers epileptic seizure? For in house epilepsy training courses and summer A proven monitoring system with high integrity radio pagers, to discounts quote MP1 detect bed movement, sounds, breathing problems, urination, vomitting or falling associated with epilepsy spasms Epilepsy Awareness Ltd : 01636 682888 For further information, please call Alert-it care alarms on : [email protected] 0845 217 9952 or visit www.epilepsyawareness.co.uk Made in the UK www.alert-it.co.uk Registered Company No 7033444 RECENTLY FEATURED ON TV 6 · june 2010 An Advertising insert by Mediaplanet

inspiration step 1 Question & Answer find the right environment Gill Gallagher Childhood Epilepsy Information Service Manager, NYCPE

■■ What are the main issues for people with epilepsy aiming for a fulfilled education and life skills? ”The lack of understanding ! about epilepsy in schools is huge. Staff are insufficiently

bright young thing trained to support children, deal Having the right support with seizures and deliver emer- gave Ronan the freedom to gency medication. both explore and achieve. Photo: Ncype Children are often exclud- ed from activities because the school feels it won’t cope if the child has a seizure. Peer groups can also isolate their classmates. The pursuit of happiness Cognitively, children can suffer: epilepsy can cause memory prob- ■■Question: How did one more different types of medication. the chance to do before. lems and the side effects of some young person with epilepsy tri- As a result, he also has osteoporosis “I feel much more independent medication can be severe. umph over disability and isola- and is partially sighted in his right here,” he says. “I’m included - I’m Good communication is vital. tion to achieve success and sat- eye. not different from anyone else.” Give the school as much informa- isfaction? Despite being extremely isolated “And being here has also helped me tion about seizures and medica- ■■Answer: By persisting with at his former school, Rohan was so cope with my epilepsy better”, he tion and epilepsy’s cognitive ef- his edication and pursuing the keen to get his GCSEs that he stayed points out: “I now do as much as I fects as possible. Be pro-active to opportunities offered by a spe- on there to study for them and sit can for other students who have get support where necessary. cialist centre, Rohan found re- the exams. He has the invaluable seizures. With the help of the staff ward and contentment. support of his parents, who have al- here, I’m also learning to do my ■■ How can I ensure my child ways been very supportive, he says. medication on my own - a really big gets the most out of education “With their help, I even managed to step for me.” and learning? how i made it get a B in photography.” Rohan’s confidence has grown ”Don’t overprotect. Encour- Twenty one-year-old Rohan is a qui- Rohan is a now a residential stu- so much that he’s currently attend- ! age the child and work with et, intelligent young man with a dent at the NCYPE, which means ing a mainstream college, alongside the school to ensure they can do budding interest in photography. that he lives in one of the on-site the courses he’s already doing at the as much as possible. Keep absence But when you talk to him about house during term time and re- Centre. due to hospital appointments to a what life was like before he be- turns home during the holidays. He’s already achieved a Level 1 Di- minimum and provide an indi- came a student at the National Cen- This enables him to both mix with ploma in Digital Applications and vidual health plan to support tre for Young People with Epilep- people his own age and to take part is now undertaking a Level 1 Cer- your child if they have a seizure at sy (NCYPE) it very quickly becomes in activities which he’s never had tificate in Business Administration school. Help them understand clear that he’s come a very long way and IT. In addition, Rohan is also an- that an ambulance is not always indeed. Facts active member of the NYCPE’s Out- needed. Often children just need “My old school wasn’t a good reach Group, a student-led initia- a short rest and can then return place for me,” Rohan explains. “I Schools can go the extra MILE for tive where young people from the to class. used to be kept away from the oth- epilepsy: college talk to the public about their er students and I had to spend break ■■ Monitor achievement and behaviour experiences with epilepsy and what ■■ What advice would you give in and lunch times near the staff be- – epilepsy can cause changes it’s like. this area to those with epilepsy cause of my epilepsy. I didn’t get to ■■ Include the child in activities and “I think that if you’re capable of and their families? mix with anyone my own age and provide a ‘buddy’ being on a course, whatever your ”Be open about epilepsy. I had to stay in the medical room ■■ Liaise fully with parents and health disability - you should be includ- ! Learn about it and use your even after my seizures. I was the professionals ed and given suitable support to do knowledge to educate so that oth- only one in my school with epilep- ■■ Ensure staff are epilepsy-aware and what you want,” says Rohan. “That’s ers understand as much as possi- sy.” trained to deal with a seizure what I finally have achieved”. ble. Remember that epilepsy is Rohan wasn’t diagnosed with ep- ■■ Read more not who you are, it is only a small ilepsy until he was about four years ! on the web: emily davies part of you.” old. Since then, he’s been on 14 or www.ncype.org.uk [email protected]

8 · june 2010 An Advertising insert by Mediaplanet An Advertising insert by Mediaplanet june 2010 · 9 step news 2 Question: Why is such a particular concern? explore the Answer: The facts of the condition itself and the potential effects alternatives means it’s often feared epilepsy can have on development and education. sara garland, founder of the daisy garland’s best tips Find the right The ketogenic diet is high in fat and low in protein and carbohydrate and aims to sustain the state of ketosis, which occurs when the body principally burns solution for you fat instead of carbohydrate. Ke- ■■Epilepsy affects 1 in every 100 seizure control,” she points out. “In of children will respond to medi- implant is placed. tones (the residue left after the children, according to the National the more difficult it may cation or go into spontaneous re- The ketogenic diet should be con- fat is burned) are concentrated in Society for Epilepsy. be optimal seizure control. If we can mission - this leaves a third where sidered in all children who have the blood and inhibit seizures - Most crucially, epilepsy is not diagnose the specific type of epilep- seizures will continue, and it is in failed to respond to the initial two although exactly how is un- a single condition - it is the ‘epi- sy then we can give some indication these children we need to look for tried, says Prof known. lepsies’, for which there are many of prognosis – for instance, will they alternatives.” Cross: “It can cause seizure freedom When a child starts the diet causes, points out Professor Helen come off drugs, what it means for After a child has failed two drugs of more than 50 per cent in up to 40 the ratio of fat to protein and Cross, the Prince of ’s Chair learning, and so on.” First line treat- the chance of responding to a third per cent of children, and complete carbohydrate combined are usu- of Childhood Epilepsy at the UCL ment should always be medication, is less than 10 per cent, says Prof seizure freedom in 10 per cent. Fur- ally set at 4:1. Institute of Child Health, Great Or- most of which have been found by Cross. Alternatives then include ther, medication may be weaned. The ketogenic diet has been mond Street Hospital for Children accident to be anticonvulsants, she surgery, in a small number of chil- There are certain metabolic condi- around since the 1920s but and National Centre for Young Peo- adds: “The problem is choosing the dren where seizures are coming tions where fat cannot be utilised as anticonvulsants drifted onto ple with Epilepsy, and treatment right drug for the type. 65 per cent from one area of the brain, and the that need to be excluded first as the the market in the ‘40s and ‘50s it must be on an individual basis. ketogenic diet, a rigid, mathemat- diet would be contraindicated; how- fell into disuse. Prof Helen Cross Principal concerns in paediat- Great Ormond ically calculated, doctor-super- ever there are also metabolic con- The diet is usually started in ric epilepsy are getting the treat- Street Hospital vised high-fat diet which alters the ditions where the ketogenic diet hospital under the supervi- ment right and a child’s neurode- body’s chemistry by simulating the would be the treatment of choice.” sion of a neurologist, and devised velopmental outcome, says Prof metabolism of a fasting body. Ul- individually by a trained dieti- Cross. “Parents and children need timately, a further option is vagal emily davies cian. to know that the aim of treatment is nerve stimulation, where a small [email protected] Photos: istock photo

Focusing on ALL Dietary Treatments for Epilepsy for both children AND adults.

Providing Support, Education, Training and Research, ensuring provision of credible, up-to-date information for families AND healthcare professionals.

Funding Ketogenic Dietitians within the NHS backed up by quality resources www.matthewsfriends.org and professional support. The Matthew’s Friends specialist treatment and

training centre opens in 2011. Matthew’s Friends,

P.O. Box 191, Working with leading medical specialists from the UK and around the globe— Oxted, Edinburgh, October 9th 2010 provides a unique opportunity for families to Surrey. RH8 0WL “Matthew’s Friends provided our meet the experts, preceded by a 3-day professional symposium —see website England, UK. port in a terrible storm” for details.

Lesley Coyne, Mum to Jonathon and Telephone Helpline: Jennifer (pictured), both children have epilepsy. 0788 4054811 √ Constantly Updated Website √ Busy on-line forum THE specialists on Dietary √ Medical Board of Top Experts Treatments for Epilepsy √ 24 hour Helpline 10 · june 2010 An Advertising insert by Mediaplanet step news 3

keep asking questions News in Brief

research The future of epilepsy

■■Two research projects led by moving forward specialist nurses from the Na- Technology such as MRI scans are helping medical professionals tional Society for Epilepsy and understand how epilepsy affects the National Hospital for Neu- the brain. Photo:Mark Kostich rology and Neurosurgery look set to promise to make a difference for people with epilepsy. A pilot project is looking at the benefits Why the future is bright of a text messaging service to re- mind patients to take their medi- ■■ Question: What hope is Professor for Young People with Epilepsy. “We cations, while a second project is there for new treatment and Sanjay Sisodiya hope this will lead to more targeted evaluating buccal midazolam as care in epilepsy? Head of genetic research, treatments, while advances in neu- a rescue medication during pro- ■■Answer: From new tech- National Society roimaging may lead to increased longed seizures. niques in diagnosis to the iden- of Epilepsy numbers of children who may be In the US at the University of tification of hidden causes, re- suitable for surgery.” Minnesota Medical School, re- search and development are The imaging of language with- searchers have discovered that key to the future experience of in the brain using Magnetic Res- light from an ultraviolet diode epilepsy. already thought to be particularly onance Imaging (MRI) has been (UV LED) reduced ‘seizure-like’ important”, says Professor Sanjay translated to a clinical tool and is activity in a rat epilepsy model. For epilepsy, groundbreaking new Sisodiya, head of the NSE’s genet- in regular use at the NSE’s Chalfont A mutation in a brain protein discoveries offer better opportuni- ics research team. ‘This is an im- Centre, Buckinghamshire. This will gene may trigger irregular heart- ties for management and greater portant finding which will lead us help to predict the impact of sur- beat and sudden death in people quality of life than ever before. to a better understanding of epilep- gery on the function of language with epilepsy, according to new Important new imaging tech- sy and could point us in new direc- and memory and enables the pa- research. Professor John Dun- niques of epileptic activity with- tions leading to much-needed new tient to decide whether to under- can, NSE Medical Director: “This in the brain continue to be a major treatments.’ go surgery; the next step will be to is an important finding, and may focus at the National Society of Ep- Important new imaging and share this work with other centres. identify a subset of patients with ilepsy (NSE), alongside work in the mapping techniques to pin down The efficacy of treatments is -an epilepsy who are at high risk of a field of genetics. The NSE’s genet- the point where seizures occur in other area in which it’s hoped inno- death from their heart stopping ics research team has made a recent the brain also promise to open up vation will make a difference. With beating. Work at the NSE showed breakthrough with the discovery of new avenues in both adult and pae- the NSE’s use of Positron Emission that some patients with refrac- a new hidden cause for epilepsy – diatric epilepsy. Tomography imaging (PET), which tory epilepsy had occasions after in a worldwide study doctors have “There are many areas moving visualises the entry of drugs into seizures when their heart tempo- found a genetic ‘hole’ which could forward fast, in particular that of the brain from the blood, it’s hoped rarily stopped, and these patients explain why some people devel- finding an underlying cause - for it may be determined why anti-epi- were treated with insertion of op epilepsy when there is no other instance, genetics research,” says leptic drugs fail to control seizures a cardiac pacemaker. This new known cause such as a head injury. Professor Helen Cross, the Prince in some individuals. finding reinforces the suggestion “This loss of genes can be found of Wales’s Chair of Childhood Epi- that it would be important to look in a broader range of types of epi- lepsy at the UCL Institute of Child for occasional abnormalities of lepsy, not just the individual syn- Health, Great Ormond Street Hospi- cardiac rhythm in those with re- dromes in which inheritance was tal for Children and National Centre emily davies fractory epilepsy, using implant- [email protected] ed long term ECG recorders.” The Meath is a specialist epilepsy provider and one of Godalming’s oldest charities, caring for over 60 adults who face complex epilepsy and other disabilities as part of their daily lives. We strive to support them in living life as fully as possible, in an environment as close to home as we can make it, with opportunities for the development of practical and creative skills. www.meath.org.uk

The IDEA League UK is the only charity in condition. The IDEA League UK aims to the UK dedicated to improving the lives work alongside other epilepsy charities of children and young adults affected and organisations to change that, while by . Dravet Syndrome improving the lives of those affected is a rare neurological condition charac- along the way. terised by severe epilepsy that does not To Donate visit respond well to treatment. It begins in www.justgiving.com/idealeague early infancy and can affect all areas of de- or for more information visit our website velopment, most noticeably speech and www.idea-league.org.uk mobility. The course of Dravet Syndrome is highly variable from child to child and The IDEA League UK the seizures experienced are termed life- The Voice of Dravet Syndrome threatening due to their severity. Registered charity number: 1128289 Email: [email protected] Telephone: 07775 347234 The IDEA League UK has 3 aims: 1) To fund medical research into Dravet International Dravet Syndrome eague Syndrome and other related genetic The voice for Dravet Syndrome sodium channel epilepsies

2) To raise awareness of Dravet Syndrome, and other related genetic sodium channel epilepsies

3) To support families affected by Dravet Syndrome, and other related genetic sodium channel epilepsies, emotionally, practically and financially

At this moment in time there is no cure for Dravet Syndrome and precious chil- dren are being lost to this catastrophic 12 · june 2010 An Advertising insert by Mediaplanet step news 4

understand Get the best results the reality

■■Question: What’s so im- to be avoided at all costs. “It’s a big portant to know about epilep- mistake to assume epilepsy and sy in older people? simply place an older person on ■■Answer: Epilepsy in old- drugs,” says Prof Duncan. “Firstly, er people is on the rise – and because we might be missing some- both diagnosis and treatment thing else that is going on and sec- present particular challenges, ondly, because anti-epileptic treat- with careful prescription need- ment can cause side-effects.” And ed. with more than 20 anti-epileptic drugs to choose from, it’s now pos- “We are seeing far more epilepsy in sible to individualise treatment older people - principally because more than ever before, he adds – people are living longer than ever with fewer side effects on cognition before, with brain damage that can and memory. ensue from strokes or degenerative Considering the broad picture disorders such as Alzheimer’s, caus- is key. Not only is an older person ing in some cases epilepsy,” says more likely to be already taking Dr John Duncan, Professor of Neu- other drugs, to treat blood pressure, rology in the Department of Clini- insomnia, arthritis and cholesterol cal and Experimental Epilepsy at for instance, but they can feel the the UCL Institute of Neurology and bridging the generation gap.Statistics show a rise in the number of older side effects of epilepsy medication medical director, National Society people being diagnosed with epilepsy. Photo: absolut_100 more acutely – and it’s therefore im- for Epilepsy. portant to not just prescribe careful- Symptoms that often contribute challenge, decisions on treatment to the individual, he says, with sim- ly but to start with a very small dose, to an epilepsy diagnosis, such as must be made with close attention plistic generic prescription of drugs says Prof Duncan: “An 80 year old experiencing a blank spell or a fall needs a smaller dose than a younger to the ground could, in older peo- Facts person and we always lean towards ple have a range of causes less like- prescribing a more gentle drug for ly in younger people, such as a heart ■■ Epilepsy tends to be more common ■■ Some people who have had a stroke the elderly - it’s vital to consider the problem, a side effect of medication, in older adults. More than 25% of peo- may have one or more seizures. person in the round and according- hypoglycaemia, or a simple fall or ple who develop epilepsy are over the ■■ However this does not necessarily ly tailor their treatment, from diag- faint, points out Prof Duncan. The age of 60. happen and in many cases seizures are nosis to medication”, he says. potential for misdiagnosis is com- ■■ The most common causes of sei- not linked with strokes. plicated further by a lack of wit- zures starting over the age of 60 are cer- nesses to an older person’s fall or ebrovascular, which means changes Source: blank spell if they live alone. or damage to the blood vessels around ! National Society for Epilepsy emily davies If diagnosis presents the initial the brain. [email protected]

Send this coupon Freepost to: Age Concern, FREEPOST EX2356, Ashburton, Devon, TQ13 7BR Help on hand Please: send me a brochure contact me to arrange a demonstration* 24 hours a day This is for: myself a relative/friend Mr/Mrs/Miss/Ms

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22024798_SA_Epilim Ad.indd 1 14/6/10 09:26:47 14 · june 2010 An Advertising insert by Mediaplanet Personal insight

It’s a funny thing, Daniel Howard’s epilepsy: in fact, it has people laughing across Britain. What makes Daniel’s epilepsy so hilarious? Daniel is the younger brother of the comedian Russell Howard - who Daniel trusts implicitly to share often intimate details of his seizures as part of his comedy act. Why we keep smiling

My brother’s man- piercing headaches and then the sticking together hit his head!”” aged to turn some- epilepsy started.” Luckily, Daniel’s always been thing that was real- Both Russell and Daniel’s twin tough - say his siblings. Kerry is ly bad in my life in- sister, Kerry – another rising star “I always consult convinced that had it been herself to something that is from the remake of Reggie Perrin Daniel before or Russell with epilepsy they would good and out there,” – have vivid recollections of find- have been crushed by it. ‘We were says Daniel, grinning. ing their brother in the middle of using any a couple of big softies”, she says, In performance Russell, a mainstay his first seizure. “It was incredibly material about ‘whereas Daniel was just so brave.” of BBC Two’s Mock The Week, might scary,” recalls Russell. Kerry agrees: ‘I always consult Daniel before joke“ on stage about his little broth- “We had no idea what epilepsy his epilepsy in using any material about his epilep- er’s epilepsy - but away from the was,” she says. “We all sy in my gigs,’ says Russell - but em- stage it’s a different story. thought Daniel was my gigs” phasises that any attempts to break Two years older than Daniel, Rus- going to die.” down barriers and raise awareness sell has been there from the onset “I have always felt a of the condition are accidental. “I of his brother’s epilepsy. As Daniel little guilty that the lights came just do stuff that I find funny,” he explains: ‘I started having fits as a off my bike,’ continues Russell, al- says. result of a severe head injury when though he is quick to point out that Russell also knows when the I was 10. Russell and I were cycling his closeness to his brother has lit- comedy must stop. During a re- down a hill near our home when tle to do with the impact of his con- cent gigs, a woman in the audience the lights came off Russ’s bike and dition. “Epilepsy is just a tiny facet had a seizure. “I stopped perform- got stuck in my front wheel. I went of his personality,” he says. Kerry ing, came off stage and put the lady over the handlebars, over Russ and admits that Daniel’s seizures long in the recovery position,’ explains landed on my head. ago turned her into an over-protec- Russell. ‘I put my coat underneath “Of course that was more than tive sister - as children, her mission her head and made sure she was 15 years ago and I wasn’t wearing was often to protect Daniel from well looked after. Then after a break, a helmet - whenever I see some- the physically exuberant Russell. I was back on with the gig.” one cycling without a helmet now, “I would fret every time Russ and Russell, Daniel and Kerry ran the London marathon in April to raise money I shout at them to put one on. For Dan had play fights,” she recalls. “I for the National Society for Epilepsy a JECyear ADafterFOR theGUARDIAN crash I hadSUPPLEMENT:Layout really remember shouting1 8/6/10 at Russ,13:43 “Don’t Page 1

The Joint Epilepsy Council of the UK and Ireland (JEC) is an umbrella organisation representing 24 epilepsy charities in England,Wales, Scotland, and the Republic of Ireland. It provides the united voice of the epilepsy voluntary sector and campaigns for improved standards of, and access to, integrated services for health, education and social care for people with epilepsy and their carers. JEC Member Organisations For more information about the JEC, including membership, visit Brainwave – the Irish Epilepsy Association, www.jointepilepsycouncil.org.uk or contact Sharon Wood, General The Daisy Garland, , Epilepsy Action, Secretary on 01943 871852, or email [email protected] Epilepsy Bereaved, Epilepsy Connections, Epilepsy HERE, , Epilepsy Research UK, Epilepsy Scotland, Epilepsy Specialist Nurses Association (ESNA), Epilepsy Wales, Epilepsy West Lothian, Gravesend Epilepsy Network, International League Against Epilepsy (ILAE), Matthew’s Friends,The Meath Epilepsy Trust, Mersey Region Epilepsy Association (MREA), National Centre forYoung People with Epilepsy (NCYPE), National Society for Epilepsy (NSE), Quarriers, Scottish Epilepsy Initiative, St. Elizabeth’s Centre, Wales Epilepsy Research Network (WERN) Need the best care and support for St Elizabeth’s has been leading the field for more than 100 years, adults with epilepsy? offering children, young people and adults with profound epilepsy Independence Homes has over ten opportunities to enable them to live years experience providing adults fulfilling lives. with epilepsy and other neurologi- cal and physical challenges with 24 In September 2010 builders are expected to start work on hour waking care and support. St Elizabeth’s new and long-awaited Training Therapy We support 100 service users in and Vocational (TTV) building. Designed to replace a community based supported living 70s-built Day Centre for adult residents and provide our programmes and residential houses. young college learners with dedicated learning and vocational facilities all under one roof.

Our focus is on independence. We There is no government funding for such help each of our service users to ful- reinvestment and so our charity relies on the fil their potential and achieve their generosity of its donors. ambitions. We focus on what people can do, not what they can’t do. PLEASE HELP IF YOU CAN Our specialist staff includes highly www.stelizabeths.org.uk trained support workers, a medical team, and superb therapists. Contact our referrals team to discuss what we can provide. POSITIVE LIVING AND LEARNING FOR PEOPLE WITH EPILEPSY AND OTHER COMPLEX NEEDS “ is has been a superb service for our daughter. She has developed both socially and intellectually... It has been excellent for her and for us” St Elizabeth’s Centre FREEPOST, Perry Green, Much Hadham, Hertfordshire SG10 6BR � 01279 844355 ■ Email: [email protected]

Call on 0845 390 1234 Visit our website at St Elizabeth’s Centre is administered by the English Province of the Daughters of the Cross of Liège. www. independencehomes.co.uk A registered charity 1068661 and a company limited by guarantee 3492921.

We also offer three month medical assessments and respite A small change can make a big difference

EUROPEAN INDICATION FOR USE: The VNS Therapy System is I spent years seeking an effective treatment for my epilepsy. Together with my doctor we have indicated for use as an adjunctive therapy in reducing the frequency of seizures in patients whose epileptic disorder is dominated by partial been struggling to find the best combination of drugs. However, despite trying many different seizures (with or without secondary generalisation) or generalised types of medication, I always felt a sense of disappointment until my doctor introduced me to seizures, which are refractory to antiepileptic medications. VNS Therapy. CONTRAINDICATIONS: The VNS Therapy System cannot be used in patients after a bilateral or left cervical vagotomy. Do not use short-wave diathermy, microwave diathermy, or therapeutic ultrasound diathermy on Once the VNS Therapy device was implanted, I began to notice that my seizures were decreasing patients implanted with the VNS Therapy System. Diagnostic ultrasound is not included in this contraindication. both in terms of frequency and intensity. Now I feel more alert, more confident and more WARNINGS: Physicians should inform patients about all potential risks and independent. Put simply, I can now go out and do things that I could only dream of doing before adverse events discussed in the VNS Therapy System Physician’s Manual including information that VNS Therapy may not be a cure for epilepsy. Since VNS Therapy. seizures may occur unexpectedly, patients should consult with a physician before engaging in unsupervised activities, such as driving, swimming and bathing, or in strenuous sports that could harm them or others. Patients The reality is that VNS Therapy has enabled me to enjoy those little things in life that most who have pre-existing swallowing, cardiac or respiratory difficulties (including, but not limited to, obstructive sleep apnea and chronic pulmonary people take for granted. And this means that epilepsy no longer controls my life as it previously disease) should discuss with their physicians whether VNS Therapy is did – now I control my life. appropriate for them since there is the possibility that stimulation might worsen their condition. The VNS Therapy System may affect other medical devices and other medical devices may affect the VNS Therapy System. MRI can be safely performed; however, special equipment must be used. Ask your doctor about VNS Therapy. ADVERSE EVENTS: The most common reported side effects from It could be the first step towards a better life. stimulation include hoarseness, paresthesia (prickling feeling in the skin), dyspnea (shortness of breath) and increased coughing. The most common This is the experience of one individual who tried VNS Therapy. Similar results cannot be guaranteed for other patients using this treatment. reported side effect from implant surgery is infection.

REFERENCES: Morris G.L. et al. Neurology 1999; 53(7):1731-1735 • Tatum W.O. et al. Neurology Cyberonics Europe S.A./N.V., Belgicastraat 9, 1930 Zaventem, Belgium, Tel. +32 2 720 95 93, Fax +32 2 720 60 53, www.VNSTherapy.com 2001; 56(4):561-563 • VNS Therapy Patients Registry, April 25, 2003. Data on file, Cyberonics, Inc. Houston, Tex. • Fromes G.A. et al. Epilepsia 2000; 41(7):117 © 2009 Cyberonics, Inc. All rights reserved. Cyberonics® and VNS Therapy® are registered trademarks of Cyberonics, Inc. PatAdGenA408-11-2000-EC