Issue 21, Winter 2018

Back driving after A couple’s heart 40 years of seizures. wrenching decision Maggie Izzard tells over whether to have her story a second baby PAGE 6 PAGE 18

Looking inside the brain without electrodes PAGE 9

epilepsysociety.org.uk EPILEPSY REVIEW NEWS SUDEP New partnership MEDICATION could lead to greater Review into 2018 has been a remarkable year. People with epilepsy have understanding sodium valproate been responsible for two key dates – 24 April and 1 November. An independent safety review into of SUDEP the epilepsy medication sodium The first marks the introduction of new regulations around valproate was launched in October with a 'call for evidence' put out for sodium valproate. The second is the day, specialist doctors those affected by the medication. in the UK were allowed to start prescribing medicinal cannabis e are excited to team will include scientists from the The review, chaired by Baroness announce a new Epilepsy Society and members of Julia Cumberlege, is examining the for epilepsy. But neither story has yet found its happy ending. partnership with Professor Sanjay Sisodiya's clinical way the health system responded Congenica, a global research team at UCL (University to concerns raised about the Wdiagnostic decision support platform College London), alongside harmful side effects of the anti- Both milestones were made possible largely accessing cannabis-based medicinal provider based in Cambridge, to Congenica's clinical scientists. epilepsy medication. thanks to the determination of women whose products for their children from abroad. study the genomics of SUDEP. The Professor Sisodiya (UCL Queen Up to 40 per cent of babies children have been affected either by side People often accuse the wheels of the new collaboration aims to improve Square Institute of Neurology) exposed to sodium valproate in effects from epilepsy medication or by lack government of grinding laboriously slowly. the clinical understanding, prediction who is also Director of Genomics pregnancy are born with physical of access to treatments they felt would help But not this time. Responding to the stories and treatment of the condition. at the Epilepsy Society, said: “This or neuro-developmental issues. alleviate seizures. of families travelling to Canada to access Sudden unexpected death in important study may help us find The call for evidence is being The valproate women, along with charities medicinal cannabis, and after a review by the epilepsy (SUDEP) occurs in roughly and understand some possible risk carried out by the Independent and patient organisations, campaigned to Government’s chief medical officer, cannabis- 1/1000 people with epilepsy and factors for SUDEP. Collaborating Medicines and Medical Devices raise awareness of side effects associated based products for medicinal use were is often misunderstood. By using with Congenica will ensure Safety Review. Regional meetings with the epilepsy drug, sodium valproate. rescheduled. This means that specialist genomic studies, we will seek to analyses of the data are robust have been held across the country Up to 40 per cent of babies exposed to the doctors can prescribe them where there identify underlying genetic causes and comprehensive, optimising to hear the views of those affected. medication during pregnancy are born with is un-met clinical need. And, importantly, and improve clinical understanding. the chances of discovery.” These are an opportunity to share a physical or neuro-developmental disability. research can begin to gather a robust SUDEP often occurs during Nick Lench, Chief Scientific your experiences but are not On 24 April the Medicines and Healthcare evidence base for these products. sleep and is thought to be caused Officer at Congenica, said: “We are evidence-gathering meetings. products Regulatory Agency announced new But that is where the story has yet to find by a complex interaction of genetic excited to form a partnership with Go to immdsreview.org.uk/visits. regulations around sodium valproate, meaning its happy ending. Interim guidance around the factors. The initial joint study the Epilepsy Society and collaborate html for further updates. every woman prescribed the drug would have products is tight and only a small number are looked at a group of 100 SUDEP with Professor Sisodiya, whose Regulations have changed a discussion with her doctor to help her make likely to benefit from the relaxed laws. The real clinical cases to better understand pioneering use of genetic medicine around the way in which sodium an informed decision about pregnancy and hope is for more research, but this is likely to epilepsy's underlying genetic causes. is beginning to enable the use of valproate is prescribed to girls and future medical treatments. take a minimum of three years to yield results. Using Congenica's gold-standard precision medicine for patients. women of childbearing age with But the campaign is not yet over. Early And when you have a child with ongoing Sapienta diagnostic decision "The genomic knowledge epilepsy. If your doctor has not pointers suggest there are still obstacles in seizures, three years is a long time to wait. support platform, whole genome generated in this project has great called you in for a review, make an making sure the information reaches the right It feels like a battle half won and half lost. and exome sequencing and potential to positively impact the appointment with them to discuss. people. The women, and we as a charity, will Yet doctors cannot prescribe on anecdotal analysis will be carried out to way we manage epilepsy patients You can read more about the not rest until every woman on valproate is evidence and robust evidence takes time. determine possible genetic causes by better understanding of any changes at epilepsysociety.org.uk/ aware of the risks. And next year, we will be So 2018 has been ground breaking, but of SUDEP. Sapienta is being used underlying genetic factors that sodium-valproate-guidelines. repeating our survey to find out how effective there is still much tilling of soil to be done as part of the recently-launched might contribute to SUDEP.” You should never stop taking communications have been around the risks. before both issues are resolved. We will keep NHS Genomic Medicine Service. There are three epilepsy-related sodium valproate without Changes in the law around medicinal you updated in 2019. Happy Christmas. The multi-disciplinary research deaths a day in the UK alone. consulting your doctor. cannabis were also led by a similarly determined group of women who were Nicola Swanborough Medical Director at Epilepsy Society honoured with new post

Front cover Editor Nicola Swanborough Epilepsy Society The Epilepsy Society is pleased to the position on 1 December 2018, Transcranial magnetic stimulation Email [email protected] Chalfont St Peter, Bucks SL9 0RJ announce that our medical director, leading the highly successful is a non-invasive way to look inside Telephone 01494 601 417 epilepsysociety.org.uk the brain. This is helping researchers To receive Epilepsy Review, email us at the address Registered charity no 206186 Professor Ley Sander, has been epilepsy department, spanning basic at Epilepsy Society to interpret above, or see back cover A company limited by guarantee appointed as the Head of the science through to clinical trials. information generated through Registered number 492761 England reading a person’s DNA. You can Views expressed by contributors in this publication Department of Clinical and Professor Sander said: "This is find out more on page 9. are not necessarily those of Epilepsy Society Designed by Dugdale Design Ltd Experimental Epilepsy at UCL a wonderful opportunity to really bendugdale.com Information may change after printing and is not Printed by Rapidity Queen Square Institute of Neurology. push forward our epilepsy research a substitute for advice from your own doctors. Rapidity.com Professor Sander has just been programmes and bring exciting Epilepsy Society is not responsible for any Printed on chlorine free paper ranked as the world's leading developments to the people we actions taken as a result of using this information from sustainable forests epilepsy expert for the sixth year see in clinics. I am thrilled to be running by Expertscape. He took up heading up the department."

2 Epilepsy Review issue 21, 2018 Epilepsy Review issue 21, 2018 3 SEIZURES SCIENCE Watch it on video Voice of the future It's seizures, Protein found in worms helps You can find these videos at not fits to stop seizure activity youtube.com/epilepsysociety Doctors have been told to use plain New research that involves using exciting piece of work offering great simple English rather than medical protein in worms to suppress hope in the future for people with jargon when writing to their patients. seizures could spell hope in the focal epilepsy that does not The Academy of Medical Royal future for thousands of people respond to conventional treatment. Colleges launched a 'Please write with epilepsy. "Focal epilepsy starts in a to me!' initiative that is designed to Scientists at University College specific area of the brain and where improve communications between London (UCL) have used a that area can be pinpointed, it is doctors and patients to make chemical found in worms to reduce sometimes possible to remove the hospital letters easier to understand. seizure activity in the brains focal point through brain surgery. The word 'seizure' to describe of epileptic rats. The chemical But this is only possible if it is a person's epileptic seizures is produces a protein that reduces in an area of the brain that will not Professor Sanjay Sisodiya talks among the terminology which the brain activity when glutamate compromise essential functions about his half marathon to Academy is asking doctors to levels build up, causing neuronal such as language and movement. fundraise for a special chair avoid. The Academy has said that excitement in the brain. "Modifying the excitability for his epilepsy clinic. Page 8. doctors should replace this with The chemical is delivered into of nerve cells by introducing a the word 'fit'. the brain by injecting it through targeted ‘virus’ that will not infect While welcoming the initiative, the skull inside a harmless virus. a nerve cell but instead deactivate Epilepsy Society's medical director Using gene therapy, this enables the seizure, may offer a real Professor Ley Sander has said that the worm DNA to spread alternative to surgery. It also has the new guidelines on medical throughout the brain. the advantage of preserving the terminology contradict preferences Epilepsy Society works as part functional areas of the brain." expressed by people with epilepsy. of a unique arrangement with "At the moment results have "Writing to people in plain UCL and the National Hospital for only been shown in animal models English is fundamental to good Neurology and Neurosurgery. The and it is important that this is communication and effective health charity's medical director Professor now translated into humans." Sarah explains why she is leaving treatment," he said. "This helps Ley Sander is hopeful the new gene If the chemical induces the a gift for Epilepsy Society in her to empower people and enable therapy could benefit discoveries same response in humans, the will and what she hopes it could them to take an active role in being made through its own UCL research team hopes a new mean for the future. Kadijah Mkwella bravely stood the management of their health genomic sequencing programme. treatment could be available up at Epilepsy Society’s annual condition and we fully welcome He warned there was a long way on the NHS within 10 years. conference to ask for more the Academy initiative. to go before it could be used in The research is published epilepsy awareness raising in "However, the term 'seizure' humans, but said: "This is a very in the journal Nature Medicine. BREXIT schools. We will be giving a talk rather than 'fit' does not class as to pupils at Kadijah’s school medical jargon in describing Brexit and AEDS early in 2019, and they have epileptic seizures. Some years ago TREATMENT named us their charity of people with epilepsy were asked in Epilepsy Society has welcomed the year. Well done Kadijah! a survey what their preferred Laws relaxed for medicinal cannabis Government plans to ensure that terminology was for describing their As of 1 November, specialist doctors parents of children with severe people with epilepsy in the UK will epilepsy. People were adamant that in the UK can now prescribe cannabis- epilepsy, who were campaigning to be able to access their medications Annual conference page 11 'seizure' was more preferable to the based medicines following a make medicinal cannabis legalised. in the event of a no-deal Brexit in Team Purple abseils down word 'fit' which carried much stigma change in law by parliament. Previously, doctors were March 2019. Broadgate Tower in London to with it and in some contexts was The following conditions can required to seek approval from The Health Minister has written reassured that the Government was raise money for Epilepsy Society. used as a derogatory term," he said. be considered for treatment with experts before patients could to pharmaceutical companies asking making plans in a timely manner. "We still hear some people in medicinal cannabis: access these medications. them to ensure that they have a "It is absolutely vital that people clinic talking about their 'fits', and • Children and adults with rare, The decisions on prescriptions minimum six week stockpile of with epilepsy are able to access that is certainly their prerogative. severe forms of epilepsy for cannabis-based products for prescription-only medicines in case a consistent supply of medication We would not question this. But as • Adults with nausea caused by medicinal use must be made on a of potential delays at UK borders. without having to worry," she said. medics at a centre of excellence for vomiting caused by chemotherapy case-by-case basis, so the drug is Many anti-epileptic medications "Any interruption to medication, epilepsy and as a national charity, • Adults with MS-related muscle prescribed to those who need it. are imported from Croatia, Hungary, can result in a breakthrough seizure which supports more than half a spasticity. The Home Office advises all Germany and Switzerland. and this can have a high impact million people with epilepsy, we will It will be the specialist doctor's those seeing a specialist to discuss The Minister wrote: "We are on a person’s life. still continue to respect the wishes responsibility to prescribe the products their treatment plan with them. It confident that, with adequate The Government is asking of people with epilepsy and refer where they feel it is needed. stresses the new laws do not pave preparation… we can safeguard pharmaceutical companies to to seizures as seizures." The change in law came after the way for legalising recreational patient care in the event of no deal." arrange for medicines with a short Rev Bob Mayo shares his poem Find out more at epilepsysociety. Home Secretary Sajid Javid cannabis. Please see page 18 for Chief Executive at Epilepsy -shelf life to be air-freighted in, describing his experience of org.uk/epilepsy-terminology. responded to concerns from the more information. Society, Clare Pelham, said she felt rather than risking border delays. a seizure.

4 Epilepsy Review issue 21, 2018 Epilepsy Review issue 21, 2018 5 YOUR STORIES Clockwise from far left: Queen of the road, Maggie, back behind the wheel; wedding day bliss with husband, Trevor; RAF years for proud Dad and driving instructor, Tom Izzard; Maggie with her Dad in later years. Below: a portrait of Trevor by artist, Maggie.

advice on things like breathing exercises and balanced diets. I always had a note book to hand so that it was never a problem trying to remember everything. I got remarried two years ago, developing my hobby in painting portraits and when I saw my specialist I mentioned that life Me and my epilepsy was far less stressful and that I felt more reassured.

Seizure free at last Then in June this year – for the first time in four decades – Maggie Izzard I realised I had been one whole year without a seizure. I could not believe it. After 40 years of feeling doubtful and unsure of when my epilepsy might occur, I was finally disability because I felt people with difficult because of having to seizure free. I put this down to Maggie Izzard’s father taught her to drive when she was a teenager, disabilities were misunderstood. declare that I had a disability both perseverance and self but shortly after leaving home for university she was diagnosed or medical condition. The bias assurance. I think that not feeling A positive outlook against a disability or being of an anxious has certainly helped to with epilepsy and had to give up her driving licence. After 40 years But in my late 30s I started to realise older age was a constant barrier, keep my epilepsy under control that one should try to feel positive, especially being over 40 in London. and feeling sure about my medicine. of struggling to get her epilepsy under control, Maggie is finally happy and reassured and look on seizure free and back behind the wheel of her car. Here she the bright side. I realised that I could Marriage break down Back behind the wheel get a bus pass and help with fares I moved away from London in Recently I received my full driving describes how perseverance, patience and a positive attitude on trains, all of which was great. 2000 when my marriage broke licence back from the DVLA. I felt down, seeking refuge with my so delighted and could not stop have helped get her back out on the open road Not responding to medication parents and trying to rebuild telling everyone. I am now out on My medication was still not my self-esteem. the road having ‘reminder’ working. My drugs and dosage I started doing oil lessons. I was quite Learning to drive two months after the start of term to four weeks. Part of the problem were regularly changed which was painting and found surprised that this I had a great childhood, learning I noticed that I occasionally felt was that I never knew when they very tiring. It was at the hospital in that painting was my full driving how to cope with life and enjoy it. as if I had a kind of short absent were going to happen, what was Queens Square in London that I portraits was very licence with no My best friend and I learnt to drive mindedness or interruption in going to happen or what the had a scan with the newly installed inspiring. word of advice at 17. My father taught me. He concentration and awareness outcome was going to be. Things MRI, confirming that the only way I was now from was in the RAF and instructed during the day. I went to see my got worse when I graduated and to proceed was with medicine. under the care the DVLA officers how to drive all the military new GP and told her that I thought moved to work in London. of Walton Centre recommending vehicles. I passed my driving test I might have epilepsy, Accidents during seizures in Liverpool that I have a first time. My friend and I took She was most surprised but I Disclosing my epilepsy I had several accidents as a result and was on number of turns driving each other out for was eventually given a diagnosis I loved the city, the excitement of of my seizures, almost falling levetiracetam but it reminder lessons. a night once a week to the nearest of epilepsy and was put on the first feeling part of a trendy through a glass window, walking was still not working. Forty years not disco seven miles away. of a long trial of medication. And, environment and starting a graphic into a side of a building in Regent We tried various doses driving is quite a long I had to hand in my driving licence. design business, working mainly Street, leaving a lot of blood on and kept persevering. time but I am starting to feel Leaving home and epilepsy with the art and antique world. the pavement then being taken more confident and will soon love Then came the stress of college Living with seizures Clients seemed to understand away in an ambulance. Improvement in well being it as much as I did when I was a exams, the challenge of leaving My seizures were not tonic when I mentioned about my I closed my business and As time went by my life started to teenager. I think my father would home and going to university. clonic but partial and happened epilepsy just in case I had a tried to get employment in print feel more positive. I felt far more be thrilled to see me back out on All went well at first then about approximately once every three seizure. I would not refer to it as a management which was very at ease and less anxious, getting the road after all these years.

6 Epilepsy Review issue 21, 2018 Epilepsy Review issue 21, 2018 7 RESEARCH

Epilepsy expert Professor Sanjay Sisodiya explains why he and colleagues ran through London’s rain-soaked royal parks to raise money for a chair they hope will make a difference to the people who they see in clinic. Nicola Swanborough writes What is TMS-EEG? Dr Simona Balestrini is using Transcranial Magnetic Stimulation (TMS) with electroencephalography (EEG) to look at brain activity in anjay Sisodiya is director But today Sanjay is not talking people with epilepsy. Here she of genomics at Epilepsy about his work as a scientist or explains what she hopes to achieve. Society and professor of a doctor. He is here to talk about ‘TMS is a sophisticated tool that neurology at UCL. When his most recent personal project is part of our genomics toolkit. It is a means of looking inside a person’s She is not seeing patients, his work and one that had him feeling ever brain without using needles or is focused on pioneering research so slightly nervous. electrodes. It is a non-invasive to understand the complexities of On Sunday 14 October, he test that can be used to interpret epilepsy, unravel its many causes swapped his more familiar suit information gained through genetic and discover new treatments. and lab coat for running vest and sequencing. TMS uses a strong magnet, similar to the one used in Every day he looks at the small trainers to take part in the London the MRI scanner, to induce very brief print of what makes us who we Royal Parks Half Marathon. His electric currents in the brain. We can are. Doctor, scientist and some aim was to help raise £10,000 for measure the response of cortical might say detective, his work a much needed dedicated chair circuits in the brain to TMS and involves mining the three billion that is integral to a new diagnostic generate a direct profile of brain letters that make up our DNA, test – transcranial magnetic activity and function. Put simply, TMS can establish a link between searching for duplications, stimulation with brain activity and different types deletions or recurring patterns electroencephalography (TMS- of sensory, motor and cognitive that might suggest a genetic EEG). The chair will make functions. We can then establish contribution to a specific type diagnostic tests more comfortable whether a specific genetic change is of epilepsy. for people undergoing the test and impacting on the function of the brain. For some time we have been Sanjay calls genomics his ‘big will also enable him to produce looking at the brain using TMS project’. ‘It is something I want to more accurate diagnostic results. together with electromyogram do for people with epilepsy, for the TMS is a non-invasive tool that (EMG). This allows us to measure families who I have been seeing helps to interpret information electrical activity of muscles. But over many years and for whom, gained through new genetic tests this technique has only allowed us to quite often, we have no answers and build up a clearer picture of look at the motor cortex in the brain. Now with TMS-EEG we are able to explain their epilepsy and no how those changes impact on the to look at brain activity across the treatment options that will control function of the brain. This can then whole of the cortical part of the their seizures,’ he says. help to guide and monitor brain, guiding and monitoring Based at Epilepsy Society’s treatment options. (See right.) potential treatment options. Chalfont Centre in Buckinghamshire However, tests can take up to By repeating the test over a period of time, TMS can be used and at UCL, Sanjay is leading one two hours and require the patient to show the course of epilepsy of the largest epilepsy genetic to lie as still as possible in a in the brain and whether different Professor sequencing projects in the world, reclined position. Many of those medications lead to an improvement looking at the DNA of 5,000 people who currently undergo TMS-EEG or a decline in the condition. with epilepsy. Already results are often have mobility issues. It is hoped that in the future TMS bringing hope of a future based Sanjay was joined on the run will be used to predict individual response to anti-epileptic on more precise personalised by two of his colleagues: Katri medications. We also hope that it may medicine with individuals being Silvennoinen, research associate help us to predict outcome in epilepsy, in the park prescribed the right medication, at Epilepsy Society and neurologist including the risk of SUDEP (Sudden at the right dose, from the point Meneka Sidhu. Together they Unexpected Death in Epilepsy). of diagnosis. formed the Epilepsy Society

8 Epilepsy Review issue 21, 2018 Epilepsy Review issue 21, 2018 9 YOUR GUIDE

Our annual conference The money about it.,’ he said. for those people who undergo ‘I have never been much of transcranial magnetic stimulation they raise a sportsman. At school I was in clinic. ‘It is really good to feel always picked last for every team that by doing something we enjoy, This autumn we held our annual conference the effort, the thought, the really helps to but I have always liked running we will have made a difference collaboration and the pure push forward our and recently have been doing to the people we see in clinic,’ in London, with some 200 delegates joining dedication that goes into a bit more. So I thought why not she said. research at Epilepsy Society. research. And combine being a doctor, a scientist Sanjay was pleased with his us at the Holiday Inn to hear from leading In the last year, it has been alongside my and a runner and see if I can run, in spite of injuries in the build awe inspiring to meet with our literally go that extra mile. up to the day: ‘I like to think that by experts in the field of epilepsy. As well as researchers and scientists; patients, they have ‘Research costs money and pushing ourselves in training and medics we were joined by the Rev Bob with our professors Ley Sander been one of the I am always very aware of the on the day, we have helped to and Sanjay Sisodiya and their tremendous support we receive improve the experience for Mayo, vicar of a London parish and chaplain wonderful teams who come inspirations for my from people with epilepsy, their patients when they come for a at Queens Park Rangers Football Club. to us from all over the world. taking part in the family and friends who jump out TMS test. The more accurate the I don’t think I’ve ever met such of planes, bake cakes, undertake results we obtain, the more precise Bob was talking about his own experience a focused, determined group of Royal Parks Half amazing physical challenges the treatment will be. And that is people – a group so committed Marathon.” or simply make a donation certainly worth enduring a few of living with epilepsy. Here we provide to understanding the causes of because they want to help make aches and pains along the way.’ epilepsy and finding better, more a difference for people with You can still support Sanjay, a taste of some of the talks from the day. effective treatments for the epilepsy in the future. Katri and Meneka by making a Watch out in Epilepsy Review for details condition. Initially I assumed this ‘The money they raise really donation, at www.justgiving.com/ was the drive and ambition of the helps to push forward our fundraising/epilepsy-society- of our conference in 2019. ‘scientist’. The need to discover research. And alongside my research-team and know and make better. But in patients, they have been one of the the last year, I have realised that Research Team. inspirations for my taking part in Thank you. the real drive behind our scientists In the run up to the race, Sanjay the Royal Parks Half Marathon.’ and their research programme is suffered injuries to his calves and Katri said she was proud to people with epilepsy, the people a broken finger, but nevertheless, wear her Epilepsy Society vest. Peter Worthington, our Chair celebration of, or longing for, our neurologists know, the people in spite of appalling weather on ‘I’m really grateful to everyone of Trustees, reflects on the a year of seizure freedom – that they see and talk to in their clinics. race day, he completed the run in a who supported us throughout this difference a year makes glorious goalpost that means you It is your stories and the impact respectable 2 hours and 17 minutes. journey. On race day, a number of at Epilepsy Society can either start learning to drive that epilepsy has on your lives, Katri achieved her goal of crossing people braved the rain to cheer us “A year has become even more or reapply for your licence. that motivates and inspires the finish line in under two hours on, and this definitely helped me significant as a milestone in The car is a passport to our research team. at 1 hour 52 minutes, and Meneka reach my target time, which Sponsor Sanjay! the last year as I have come to freedom; a passport to wider job And indeed the same is true came in at 2 hours 5 minutes. I’m thrilled about.’ understand just what impact opportunities; wider choice of across the organisation, whether Sanjay explained his motivation Meneka said she was Visit Sanjay’s Just epilepsy, and in particular shopping venues; better education we are talking about advocacy, for running the race. ‘I had never pleased that all their training Giving page to show uncontrolled seizures, can have choices; a wider social life. Driving influencing, awareness raising or run any significant distance before and preparation would help to for someone with the condition. is the holy grail. And somehow, for fundraising. The driving force is and I have to say I was anxious make life more comfortable your support Time and again I see that me, that really makes sense of all the people affected by epilepsy.’

10 Epilepsy Review issue 21, 2018 Epilepsy Review issue 21, 2018 11 Dr Hugh Selsick talks sleep “We’ve all Seven top tips for better sleep got our own experience of Dr Hugh Selsick is a consultant psychiatrist working in sleep Dr Fergus Rugg-Gunn discusses epilepsy but in medicine, based at the Royal advanced neuro-imaging my experience I’ve London Hospital for Integrated Medicine. He shared his top tips had some seriously for dealing with sleep problems. cool and funny Changing how we think about sleep seizures, coming For people with insomnia, there back to some lovely, is often anxiety around how insomnia may impact their long- caring people. term health. There is very little Dr Simona Balestrini I fall over every evidence to suggest that insomnia talking about TMS will shorten a person’s life span, (see page 9) four to five weeks. and for some people knowing that insomnia is not going to kill them But I don’t need can often reduce this anxiety to be defined by considerably. Then there is the myth of the eight hour sleep. what happens But the truth is that the amount when I fall over. of sleep that is right for us varies. We each need the amount of sleep You’ve got to that will allow us to feel alert most think your way of the time, most days of the week. around things. Sleep, sex and getting dressed With epilepsy, you To help break the feeling of being “Our DNA is like our fingerprint. Every awake while lying in bed, we single one of us has a different genetic Our sleep fuel tank on average and your wake up time may lose your mind have to separate our “awake” Fatigue makes you sleepy. From is 7am, you shouldn’t go to bed but you don’t lose activities from our place of make up. It is our blue print. You the moment you wake up you start before 1am. This greatly improves sleep. This means limiting would never build a house without to accumulate sleepiness. You sleep quality. For people with your intelligence. time in the bedroom to only are filling up your sleep fuel tank. epilepsy, it is important to achieve I run a paper diary, three things – sleep, sex and having a blueprint in place first. This is When it is full, you fall asleep. It is this by moving the bedtime later getting dressed. Keep any other where the genomic revolution will make a important to guard your sleep fuel in very small steps, 15 minutes a an electronic diary activity outside of the bedroom. by not sleeping during the day. This week, rather than in one go. This huge difference. Once we can understand will only steal from your night sleep. takes longer but it is worth taking and I tell my wife Tea and temperature our genetic make-up, we will be able to things slowly. As sleep improves, what I’m doing. Two golden rules: Quality before quantity we gradually make the bedtime If I have a seizure, • Have a cut-off point for deliver personalised medicine from the We try to improve quality of sleep earlier to increase sleep quantity. caffeine intake, ideally 1 or 2pm point of diagnosis. But person-centred before we look at quantity. But this I have three • Keep your bedroom cool comes with a warning for people Relaxation before bedtime (ideal temperature 18 degrees treatment is not just about controlling with epilepsy. If sleep deprivation Progressive muscle relaxation ways back to centigrade). triggers your seizures, it is important is helpful for everyone. This is working out seizures. It is about tackling the stigma that this is managed by an expert a matter of working through the Setting your alarm that is attached to epilepsy. One of my and is taken in easy steps. body, tensing muscles in turn for what I’m doing.” We ask patients at the sleep five seconds and then relaxing People often think that a good REV BOB MAYO, VICAR OF ST night’s sleep is dependent on patients has not left the house for nine clinic to work out the average them. This can help to get the STEPHEN AND ST THOMAS, keeping a constant bedtime but years because of the stigma associated amount of time they are asleep. body and mind into a relaxed LONDON AND CHAPLAIN it is the time that you get up that This is then subtracted from their state and ready for sleep. AT QUEENS PARK RANGERS is the regulator. It is the one thing with the condition. The only time that wake up time. We then say don’t You can read more about epilepsy FOOTBALL CLUB. YOU CAN READ you can absolutely control. So, get person sees the sunlight is in the garden. go to bed until that time. For and sleep in Epilepsy Review MORE ABOUT BOB IN EPILEPSY an alarm clock and set it for the example, if you sleep for six hours Issue 16. REVIEW ISSUE 19. same time every day, seven days Person-centred treatment must take this a week, regardless of what time into account.” you go to bed. LOOK OUT IN EPILEPSY REVIEW FOR DETAILS OF OUR 2019 CONFERENCE PROFESSOR LEY SANDER, MEDICAL DIRECTOR, EPILEPSY SOCIETY

12 Epilepsy Review issue 21, 2018 Epilepsy Review issue 21, 2018 13 FUNDRAISING LEGACY Why fundraising is in my DNA In the first of a At one point, around 2010, I used to experience up new series, Debbie to ten seizures a day. Will power My life was made up of Bromley-Derry, 53, “sleeping and seizuring!” tells Epilepsy Review I was fortunate that the brilliant staff at the As a young man, the “Friends, neighbours and relatives retirement many years later. why she ran the National Hospital for all turned to Andrew for advice or Andrew and his family also Neurology and support that Andrew assistance. I think Andrew left began to receive vital support and Great North Run Neurosurgery (NHNN) a little of himself in every house information from Epilepsy Society. and at Epilepsy Society’s Redhead received he ever lived in.” This helped Andrew manage his for Epilepsy Society Chalfont Centre in Andrew experienced much epilepsy, but it also helped him Buckinghamshire were from Epilepsy Society, stigma due to his epilepsy. And deal with the associated stigma. able to pinpoint the source helped change his life. side effects from his medication His brother continued: “The was privileged to have race of my seizures. On one often impacted on his social life reference Andrew received after number 0001 for the Great occasion I was able to Now a generous gift and development throughout his leaving the South Bank University North Run on 9 September. This watch my seizures on teenage years and early 20s. shows that the early prejudice he accolade should have gone to a video. This helped me in Andrew’s will could Andrew’s brother, Paul, encountered when looking for Ithe Olympian and marathon runner understand what my continued: “It was very difficult for work, was entirely unjustified.” change the lives of Mo Farah, as he won the race last family experienced. Andrew to find employment, and After his retirement Andrew year. However, the race organiser, As a result of this many in the future. we know of at least one instance dedicated his time to looking after former Olympic athlete and BBC assessment work, I had where a promising interview was his elderly parents, returning the commentator, the amazing the opportunity to be one Luke Edwards writes terminated when his epilepsy arose.” care and tenderness they had Brendan Foster gave me the of the first people in the As a young man Andrew shown him throughout his life. accolade as he felt inspired Rose Trial epilepsy surgery ndrew Redhead was born worked as a backstage technician Andrew passed away last year by my journey with epilepsy. programme at the NHNN in 1943 but in spite of at the local amateur dramatics after a battle with prostate cancer. Brendan has been a friend for a in 2012. This used having epilepsy as a society. However his family always His epilepsy was well controlled long time. I was also lucky enough radiosurgery, or gamma child, he wasn’t properly described him as somehow and he had not experienced any to be supported through my knife, as opposed to a Adiagnosed until the age of 17. As “fading into the background.” seizures for a long time. But his training and through the run by temporal lobectomy, to treat and for the Epilepsy Surgery a result he was often punished at That was until neurologist brother Paul said Andrew’s gift of a another dear friend, Eugene Gilkes, my temporal lobe epilepsy. Friends Group, a Facebook group school for his poor attention span, Professor Ley Sander, now medical legacy to the Society was his thank who is a Commonwealth Games Throughout my journey I have offering a network of support for when he was actually experiencing director at Epilepsy Society, helped you for the medical treatment medal winning decathlete. been lucky to have the fantastic people undergoing surgery, or who seizures alongside his dyslexia. to turn his life around. Professor and support he had received. Everybody at the Great North Run support of my husband, Kim have undergone surgery in the Seizures meant that Andrew Sander discovered that Andrew “He really appreciated being has been so supportive and and my two lovely daughters, past. I am a great believer in regularly found himself at home, was being prescribed the wrong looked after by people who encouraging and I cannot thank Rebekah and Chloe-Lou. raising awareness and supporting confined to bed, but it was while medication for his epilepsy. Andrew recognised that his epilepsy them enough. It is truly a great event. The surgery changed my life others and I wanted to inspire convalescing that he developed was being prescribed sedatives was as important and significant My journey with epilepsy and put me back on the planet. My hope in other people with epilepsy a skill that he would carry with him rather than anti-epilepsy medication. in his life as he felt it was.” started when I was three years old word in life is positivity. Myself and and give something back. throughout his life. Andrew had After a change of medication Andrew restricted his legacy and a high temperature triggered my two daughters all had the word I hope that the money I have a natural instinct for fixing things, Andrew’s health and seizure to research. His hope was that it a seizure. For many years I did ‘positivity’ tattooed on us after raised will push forward research including everything from plumbing control improved dramatically and would help drive forward Epilepsy not realise the full extent of my my operation was a success. into epilepsy surgery. and electric circuits to heating. he was able to hold down a full Society’s genomics research. epilepsy. I was a social worker for I ran the Great North Run this “He just seemed to know time job, working as a technician If you are considering leaving over 20 years. But my seizures year in order to raise money and www.justgiving.com/Debs- innately how things worked,” at London Southbank University a gift in your will, please do call became progressively worse. awareness for the Epilepsy Society Bromley-Derry said his step-brother David Read. from 1969 right up to his reluctant us to discuss. 01494 601300.

14 Epilepsy Review issue 21, 2018 Epilepsy Review issue 21, 2018 15 MEDICAL cannabis-based products for medicinal purposes. Professor Getting a prescription for medicinal cannabis Dame Sally Davies, Chief Medical Officer for England assessed their all other treatment options with therapeutic and medicinal benefits you first before considering and found there was conclusive a cannabis-based product. evidence of therapeutic benefit for A prescription for medicinal certain medical conditions. As a cannabis would only be given result, these products were moved when all other treatment out of Schedule 1 into Schedule 2. options have been tried or are This means that the drugs can Cannabis-based medicinal considered unsuitable, and now be prescribed where there is products can only be prescribed would only be given if the doctor an un-met clinical need. It also by a specialist. A GP cannot considers it to be in your best means that clinical trials can be prescribe the medication but interests. carried out to investigate products could refer you to a specialist. People always have the option which currently lack evidence to The specialist will discuss of seeking a second opinion. support their use. However, as cannabis-based medicinal products are currently Adults with nausea caused European Medicines Agency. Cannabis and epilepsy: unlicensed and because there is • by chemotherapy CBD does not contain any still a limited evidence base for • Adults with MS-related muscle significant amount of THC. their use, only a specialist doctor spasticity. The BPNA is only recommending can prescribe them and this NICE – the National Institute of CBD because there is evidence to A story still searching will be on an individual basis. Health and Clinical Excellence – is show that this newly developed The reality is that currently drawing up formal guidance on the drug can be effective in reducing medicinal cannabis can only prescribing of medicinal cannabis. some type of seizures in Dravet be prescribed in three specific This is expected to be published and Lennox Gastaut syndromes. for its happy ending conditions meaning very few in October 2019. In the meantime, While some studies have also people in England are likely to the British Paediatric Neurology suggested that THC may have an be eligible and the tight guidelines Association (BPNA) has drawn up anti-epileptic effect, animal studies around prescribing indicate many interim guidance around epilepsy suggest it can also trigger who campaigned for a change in on behalf of NHS England. The seizures. There is no evidence the law are likely to be disappointed. Association of British Neurologists from randomised controlled Only products containing CBD can is currently drawing up guidance clinical trials for products with On 1 November 2018 the Government’s landmark decision to be prescribed. Those with greater for adults. higher proportions of THC (more reschedule some cannabis based products for medicinal use, came than 0.2 per cent THC – as with than 0.2 per cent). many products accessed outside Concerns have also been raised the UK – remain illegal. What does the into force. The change in law means that specialist doctors in the guidance say? about the effect of THC on the Cannabis-based medicinal developing brain in children and The BPNA guidance states that UK can now prescribe medicinal cannabis to people with a limited products can only be considered young people. Evidence suggests non-licensed medicinal cannabis for the following three conditions: that chronic exposure to THC can number of conditions, including epilepsy. But what does the change should only be considered for Children and adults with rare, affect brain development, structure • children who: severe forms of epilepsy and mental health. in the law really mean for people and who is likely to benefit? have an epilepsy that does not • There is also no good scientific respond to conventional licensed Nicola Swanborough and Luke Edwards provide an update evidence to support suggestions anti-epileptic medications that the addition of THC in The reality is have not responded to the • combination with CBD increases ketogenic diet or who are not he context around back cannabis-based drugs we launched by the families of that currently the efficacy of cannabis-based suitable for the ketogenic diet cannabis has always been must understand how they work. children with severe epilepsy who medicinal products for children. medicinal cannabis who are not candidates for complex. Cannabis has The marijuana plant contains the had benefitted from medicinal • The BPNA also recommends epilepsy surgery. been a legal issue in the active ingredients cannabinoids. cannabis accessed abroad. Some can only be that where children are already TUK since 1971 when its medical These break down into cannabidiol products contained a higher taking other cannabis-based prescribed in three The BPNA states that the current use was banned under the Misuse (CBD) and tetrahydrocannabinol proportion of THC than is legal in products that contain higher best evidence for medicinal of Drugs Act. While many other (THC). While the THC part is the UK. But the families wanted specific conditions, proportions of THC, they should be cannabis is CBD, a highly purified countries began legalising associated with the “high” of their children, and others like them, transitioned on to CBD until strong meaning very few liquid, which has been licensed cannabis for medicinal use long the cannabis drug and is illegal, to have the same access to these evidence for these products can in the US by the Food and Drug ago, until recently the UK has CBD has been shown to relieve medications in their own country. people in England be produced through clinical trials. Administration and is currently remained relatively hard-line. symptoms of epilepsy for some In June of this year, the Home The Government has no plans are likely to be going through the application To understand why the and, in its purest form, is legal. Office launched a review into the to legalise the use of cannabis process for a licence from the Government didn’t immediately A high profile campaign was scheduling of cannabis and eligible for recreational purposes.

16 Epilepsy Review issue 21, 2018 Epilepsy Review issue 21, 2018 17 FAMILY always imagined that I would it was no longer a given that we I remember have two children. I am very would have another child. It was close to my sister and I always obviously something myself and my heart thought that I would give my my husband needed to talk about. breaking as he Ichildren the chance to have that Initially, we brushed it under the same relationship. The idea of carpet, getting on with parenthood told me he didn’t growing up without a sibling felt and gaining control of my epilepsy know if he could For the alien to me. again. But as Noah turned two it In October 2014 I was seizure became the elephant in the room. put me through free and was thinking about driving This was the year we were again. Then I found I was pregnant supposed to start trying for another it again… we with our much wanted baby and child, but neither of us mentioned dodged some everything changed. it. It weighed heavily on us. love of Noah I suffered with hyperemesis Chris was first to broach the huge bullets Faye Waddams and her husband Chris have a beautiful son, three- gravidarum and almost instantly subject. I remember my heart during pregnancy began experiencing complex breaking as he told me he didn’t year-old Noah. But Faye describes her first pregnancy as hell. Her partial seizures. The sickness know if he could put me through with Noah made it impossible to keep it all again. He said to me “ Why seizures put her life and her baby’s life at risk several times. So my medication down and my should I gamble with my luck? It choosing whether to go through it all again so that Noah could have drug levels were plummeting feels like we dodged some huge Noah’s third birthday came and (a common problem with bullets during pregnancy with Noah.” went. We had a perfect son and it a little brother or sister was a heart wrenching decision. Here Faye lamotrigine in pregnancy). It broke my heart that I knew he was time for us to make a decision. I suffered my first tonic clonic wanted a second child and I felt it We sat down one evening and explains the anguish of weighing up all they had against all they seizure in pregnancy at five was my fault that he wouldn’t have finally both agreed. If I couldn’t months and as a result I fell down one. We looked into other options carry another baby then we were could lose in order to make their family complete a flight of tube station stairs. It such as surrogacy and adoption, more than ok with only having Noah. was the worst moment of my life. deciding they weren’t for us. It turned out we were both scared The doctors thought I had For the next year we were like of upsetting the other by saying broken my neck. They were unsure a yo-yo. One minute I was all for we didn’t want to take the risk. if my baby was ok and then if the a second baby while Chris would It’s a big decision to make and stress of the fall would make him be dead against it. Then the tide I struggled to find any support which come early. I was hospitalised and would change and I’d be against is why I now run a support group. then either housebound or it while Chris was all for it. It still hurts and breaks our constantly with someone. During this time my medication hearts to have had to make that But a month later on a trip to was also changed and a decision. But I am forever grateful the seaside I went to get a parking secondary drug was introduced. that our story continues. We may ticket. With no warning I suffered I had been advised not to fall only have one child but our hearts my second tonic clonic seizure pregnant while on this drug but are full and our life complete. during pregnancy, waking up face the choice was still ours. I did my down, with nobody around to help. research, I knew the risks of the Find out more at: For a second time I was medication and have seen the fairyfaye1986.weebly.com hospitalised and this time I was devastation some epilepsy epilepsysociety.org.uk/pregnancy- experiencing Braxton Hicks drugs can cause for families. and-parenting contractions. Once again there was a fear my precious baby would come too early. Chris explains his concerns to Faye about the I was eventually induced three risk of her going through a second pregnancy weeks early and Noah arrived safely on 13 June 2015. My “You’ve got several sheets of bullet proof worst case scenario never happens. pregnancy was hell. It scared my glass lined up spinning on an axle, some But eventually that gun is going to family and it scared me. Sudden clockwise and some anti clockwise and be fired just as those holes all line up Unexpected Death in Epilepsy all at different speeds. Each sheet of and that bullet is going to travel through glass has holes in it big enough for a and destroy everything you hold dear. (SUDEP) was frequently bullet to be fired through. Then you’ve got “This is how I feel about you falling mentioned and finding the balance a gun being fired at the bullet proof glass. pregnant again. We might have between what was best for me “Nine times out of 10 the bullet hits a smoother journey the next time and best for my baby meant I was the glass and nothing happens. Then that you are pregnant, but we might not. often making heart wrenching one time it gets through a hole, but you’re It could mirror your pregnancy with choices. Having said that, I would lucky again and it just hits the next sheet Noah blow for blow. But it could of bulletproof glass. This could keep also result in my wife and unborn do it all again to have Noah. happening over and over again and the child dying.“ After going through all of that,

18 Epilepsy Review issue 21, 2018 Epilepsy Review issue 21, 2018 19 WAYS AND MEANS PROBLEM SHARED

to remind when to take your medication. • Stopping your medication Next issue Sometimes, depending on the My 22-year-old son has had cause of your epilepsy and how “I have been suffering from seizures during the uncontrolled seizures for eight easily it was controlled with day for about three years now and although I am years. He has tried 12 medications medication, your doctor might not aware of what is happening during the seizure, and the ketogenic diet. He is suggest you gradually stop taking not suitable for surgery and your medication. However, this I definitely know when one has happened and our consultant will not consider should only ever be done under the of course people are able to tell me. medicinal cannabis because the supervision of a doctor. For many trials have only been done on people, it is important to take However, I wonder whether I might also be having medication for life. children. Has anyone else gone seizures in my sleep. I live on my own so there • Other medication Any other through the same experience medication you take, including the is no-one for me to ask. I often wake up feeling and how did they overcome it? Pill, could affect your epilepsy exhausted and a bit sore although I’ve never DARREN, MANCHESTER Make sure you medications so this is your chance woken up on the floor or with blood on my pillow Would you like to share your to check there are no interactions. from biting my tongue. How could I find out thoughts with Darren? • Women You may have noticed Email nicola.swanborough@ that you are experiencing more if I am also having night time seizures?” epilepsysociety.org.uk, write to have a review seizures around the time of your Editor, Epilepsy Review, Epilepsy period or you are thinking of MARK, HARLOW Society, Chalfont St Peter, Bucks, starting a family. These are issues SL9 0RJ, or reply at: that should be discussed. facebook.com/epilepsysociety of your epilepsy • Sodium valproate If you are a woman of childbearing age and Did you know that you should have a review are taking sodium valproate you should be called in for an annual Your replies of your epilepsy every year? This is your review to discuss the risks around sodium valproate during chance to make sure that your medication is pregnancy; to discuss the need I would recommend investing I have an alarm on my bed up lots of companies Our son for effective contraceptives; and in a watch that detects convulsive which detects my seizures and Richard, aged 24 years, died from giving you the best possible seizure control, to consider whether you should seizures and alerts your chosen calls a company who checks that SUDEP in 2004. I would hope this with minimum side effects. If you haven’t change to a different medication. caregiver through the alert app. I'm safe. Maybe make a journal technology would help prevent You should never stop taking your Although I live with my partner, of how you feel the day after deaths like Richard’s. been called in for a review by your GP, make medication without the supervision there are some days where I am you think you've had a seizure Isabelle, facebook.com/ of your doctor. You can read the alone early in the morning and to compare with how you feel epilepsysociety sure you call them and arrange a date. guidelines around sodium if it wasn’t for the watch then normally. Or maybe if you can Luke Edwards writes valproate at epilepsysociety.org. I wouldn’t have known I have feel a seizure coming on set If I have a night-time seizure, uk/sodium-valproate-guidelines had some seizures whilst asleep. up a camera. I wake up with a general feeling of • Anxiety and depression Hannah, facebook.com/ I would say if you think you're haziness and a weakness that isn't our epilepsy review is change could denote a need to Many people with epilepsy epilepsysociety having nocturnal seizures I would associated with sleep. I'd also exactly that – yours. The amend your medication. If you experience these. It is important to get a cheap removable barrier to wake up with a few bruises from NICE guidelines state that have a seizure diary, take that tell your doctor how you feel and I make sure there are no sharp put on your bed. Mine just slips my convulsions. If you're unsure all adults with epilepsy along with you. If anyone has discuss any coping mechanisms. corners around my bed, just in under the mattress but you don't about if you've had a seizure in Yshould have a review once a year captured your seizures on a mobile • Stress, lack of sleep, alcohol case I have a seizure in the night want to risk injuring yourself your sleep, you could ask a friend with their GP or specialist. A review phone, with your permission, that and recreational drugs All these and hurt myself falling out of bed. as I have in the past. to stay a few nights at your house is your opportunity to discuss with would also be useful to share can affect seizures so are worth Michelle, Monmouthshire Brenna, facebook.com/epilepsysociety to keep an eye on you. a healthcare professional how with your GP or specialist talking about at your review. Joshua, Liverpool epilepsy impacts on your life. • Medication If you are • Sudden Unexpected Death in Speak to your epilepsy nurse. It might be worthwhile to buy Your review gives you a chance experiencing any side effects such Epilepsy (SUDEP) This only My mum had a bad spell with an anti-suffocation pillow just in I would have a chat with your to talk to someone about anything as dizziness, tiredness, weight happens to a very small number epilepsy and they gave her a case you have night seizures. Talk GP and if necessary ask if you can that’s worrying you and to try and change, memory loss or cognitive of people with epilepsy – about camera to take home. She also about it with your epilepsy nurse or be referred to a specialist for 24 find a solution together. impairment discuss these with 1 in 1,000. By talking about your had to wear an EEG glued to her specialist, they’ll be able to help you. hour tests with videotelemetry. The following are just a few your doctor. It could be that your epilepsy at your review you can head for two days. The EEG noted Daniel, Cardiff Eamonn, Reading examples of issues you might dosage needs changing. work out how it can be best changes in her brain, then the like to discuss at your review: • Reminders Taking your medicine managed to help keep you as safe specialists would look at the You can also buy alarms and You can read more replies to • Seizures From variations in on time is important. Alarms and as possible. Find out more at camera to see what she was doing. bed monitors for movement and Mark's letter at facebook.com/ timings to length of seizure, any timed text messages are available epilepsysociety.org.uk/sudep Becky, facebook.com/epilepsysociety sound. Google them and it brings epilepsysociety

20 Epilepsy Review issue 21, 2018 Epilepsy Review issue 21, 2018 21 AND FINALLY NEWS Society matters Purple Day planning Purple Day, the international day for epilepsy, is on 26 March, and Tonic comic although it’s still several months away, it’s never too soon to start planning how you might like to raise funds and awareness to asked the 70-something-year-old Stand-up comic and all-round funny girl support people with epilepsy. heart attack survivor about the With your help in the past, Juliet Stephens has the last laugh when details of the walk before instantly the Epilepsy Society has turned it comes to her epilepsy jumping in with enthusiastic workplaces, schools and even support, encouragement and “Well Trafalgar Square purple. of course we’ll all join you – it’ll be am really pleased to hear that Whether it’s a bake sale, a fun run someone who after a busy and a family fundraising challenge”. Going the extra mile Our own superheroes Prof Sanjay Sisodiya, the Epilepsy or a parachute jump, all proceeds stressful day at work, slips into It was only later we learned that Society’s Director of Genomics, This autumn, 14 employees from An amazing team from the Epilepsy raised go towards helping people their running shoes and goes out the walk, whilst delightfully scenic, ran the Royal Parks Half across the Epilepsy Society at Society went above and beyond the with epilepsy. Just £17 means for a quick 5k as a way to ‘relax’. was 30 miles/47 kilometres long. IMarathon to raise money for a I’m not a total slob though, I Chalfont St. Peter went the extra mile call of duty by channelling their super that someone can speak to our That’s nearly four miles/eight TMS-EEG machine (see page 8). for the charity. ‘Team Purple’ ran, powers for the Superhero Tri 2018. confidential helpline for as long do exercise, but walking is more kilometres more than a marathon! I applaud Professor Sisodiya’s swam and abseiled to raise vital funds Seventeen caped crusaders as they need to. my pace. A healthy lifestyle does I did several training walks but none commitment to take on a to support people with epilepsy. from Micholls House, one of our Head to epilepsysociety.org.uk involve exercise, and what better of them ever more than about 15 challenge, relying on the generosity Epilepsy Society’s director of residential care homes in Chalfont to find out more or email way to discover new parts of the miles/24 kilometres and at the end of friends, family and perhaps genomics, Professor Sanjay Sisodiya St Peter, were joined by staff, friends [email protected]. world than a nice long walk. of them, the prospect of walking readers (and columnists) of and two of his colleagues donned and families. They were all on a And another date for next year’s My Dad has also become fonder that same distance all over again Epilepsy Review to help him their running shoes and took on the mission to pull on their masks and diary – National Epilepsy Week than ever of walking. He had a was dreadful. I began to worry for reach his fundraising goal. Royal Parks Half Marathon. Read capes, and have the best time ever. will be from 20-26 May 2019. Look all of us. What we had signed up I am sure Professor Sisodiya more about their run on page 8. The Superhero Tri Challenge at out at epilepsysociety.org.uk to was not a pleasant country is a healthy sort of chap, and Personally, Lorenzo Caciagli, a research Dorney Lake near Windsor included for more details. walk, but an endurance event. hopefully someone who already fellow in the MRI unit and a a swim, cycle and push/run, or I do not run We started at 8am on a very hot chooses to run for “fun”. Personally keen open-water swimmer, participants could run, walk, push day in June, my siblings, husband, I do not run for fun, I run for cake. for fun, I run for swam two miles in London’s or cycle around the picturesque lake. Dad and I. We knew we had to keep Running is awful, as far as I’m Swim Serpentine in As well as having fun, the Epilepsy Get into the cake. Running is drinking water and only stopped concerned – hence my admiration, September. Society team was raising money for twice along the way. festive spirit and if I’m really honest, resentment awful as far as I’m Also in special projects at Micholls House. I didn’t imagine it would be as Don’t miss out on Epilepsy Society’s for those who sincerely enjoy it. September, Manager Tracy Cousins said tough as it was, but it was tough. range of Christmas cards available I did join a running group as a concerned, hence 40 fearless residents, staff and their families Whatever you are doing, even if it’s through our online shop. This year, way to meet people when I moved my admiration for supporters, had been looking forward to the your absolute favourite thing in the there are 16 different cards to choose to Kent. It wasn’t a great success, including eight event for weeks. “This was a brilliant world, after doing it for eight or nine from with designs to suit all tastes. because I couldn’t manage much those who enjoy it employees, abseiled 540 opportunity for us all to get together hours, you tire of it. We made it Prices start from £3. Go to in the way of conversation. I was feet down Broadgate and have fun and at the same time though. The whole walk took us epilepsysociety.org.uk/christmas- limited to “hello I’m not looking Tower in London to raise raise money for something that heart attack and bypass and valve over 12 hours. It was in equal cards to view the range. forward to this…” before we set off funds for the charity. everyone in the house could enjoy”. replacement surgery in 2016. measure brilliant and awful. We got and the “well that was awful, thank As part of his recovery he bought blisters and tired muscles, but we god it’s over,” at the end. . an activity tracker – a wristwatch made memories and raised money. You’ll understand then, that in All dogs and Christmas cheer which calculates how many steps As with Professor Sisodiya, I spite of my cynicism for running, you walk in a day. As he got wish any readers who have similar Dogs were the centre of attention Visitors had the opportunity research was my sense of achievement when healthier he became slave to his challenges in the pipeline all the when we held an afternoon of fun to take a peek inside the charity’s particularly impressive I do it is wildly disproportionate activity tracker, through which very best with all your fundraising on Bank Holiday in August at our research laboratories and and exciting.” to what I have actually achieved. he could set himself daily targets endeavours. I hope you all get a Chalfont Centre in Buckinghamshire. understand more about the causes As we went For example, I took part in a 10k to increase his distances and medal at the end. Wear that with Dogs of all shapes and sizes and treatment of epilepsy. to press, we were run in May 2014 to raise money challenge himself. pride, fellow heroes! took part in the dog show hosted Visitor John Lisle from Chalfont preparing for a for Epilepsy Society, and I’m still It was only a matter of time by Doberdayz, with prizes in multiple St Peter, said: “We found the tour second event at wearing the medal now. I won’t lie, before he found a charity challenge categories including: best puppy of the research centre absolutely our head office wearing a medal feels pretty heroic. and over a family Sunday lunch he and most handsome dog. We also fascinating. The range of projects our Christmas I really would love to be the kind of declared: “I’ve found a walk.” Well it Juliet Stephens had a visit from ’Chase’ from being undertaken ‘Chalfont Cheer’ person who sincerely loves to run; would have been churlish to have Laughing allowed children’s favourite Paw Patrol (right). was amazing and the genomics afternoon.

22 Epilepsy Review issue 21, 2018 Epilepsy Review issue 21, 2018 23 Helpline 01494 601 400 Monday and Tuesday 9am to 4pm, Wednesday 9am to 7.30pm. “Thank you for helping to Confidential, national call rate. keep the helpline open for Information and emotional support. people throughout the year.”

Rev Bob Mayo Epilepsy Society Chesham Lane Chalfont St Peter Buckinghamshire SL9 0RJ A lifeline for people Enquiries 01494 601 300 Fundraising 01494 601 414 with epilepsy

The Epilepsy Society helpline is a vital resource for many people with epilepsy when they need a listening ear or expert knowledge. Reverend Bob Mayo has used the helpline on many occasions and has epilepsysociety.org.uk written to our supporters this Christmas to ask for their help to maintain and expand the helpline so others may benefit. /epilepsysociety

Read Bob’s letter and make a donation at © Epilepsy Society | Registered charity number 206186 epilepsysociety.org.uk/christmaslifeline