Welcome to epilepsycast – the podcast about all things epilepsy, from Epilepsy Action. We’re looking forward to bringing you the latest epilepsy news and real-life stories every fortnight.
Bonuscast - Living in Lockdown with epilepsy
Living in lockdown is hard and it can be even harder if you are affected by epilepsy. We want to remind people this National Epilepsy Week - and beyond - that you are not alone. Listen to voice messages from people with epilepsy and parents of children with epilepsy as they share their lockdown stories, top tips on coping and supportive words of encouragement.
ep 1 - Port Vale FC captain Leon Legge
Check out our first episode featuring presenters Hattie Hodgson-Crome and Rich McMaster. In this episode we interview footballer Leon Legge about his epilepsy journey and what it's like to captain Port Vale. Please get in touch to share your feedback and let us know what content you’d like to see for future episodes!
ep 2 - "Educating by existing" - life with focal seizures
Rachel Batchelor, 22, has had epilepsy since she was 15. She chats about managing epilepsy as a student, taking six years to get diagnosed and working on The Epilepsy Space - Epilepsy Action’s new interactive resource for young people. As someone who has less commonly understood seizures, Rachel talks about feeling like a “walking education” to those around her.
ep 3 - Floor dancing and painting with epilepsy
Bob Sutcliffe was 36 when he had his first seizure. We talk to Bob about how his attitude to his epilepsy has changed over time, the unique way he has found to look after his wellbeing, and his motto “never give up.” Bobs paintings have raised over £100,000 for charities, including Epilepsy Action.All over the world, people are speaking up for the rights of black people following George Floyd’s death. Youtuber Derrick Kay, who has epilepsy, shares his story about an awful experience he had a few years ago following an interaction with the police. See more from Derrick and hear what he thinks needs to change, by watching his video on our social media channels.
ep 4 - "The people we're most proud of are the children we parent"
Michael and Paul Atwal-Brice have 2 sets of identical twin boys. Levi and Lucas, 14, have severe epilepsy and non-verbal autism. We chat to them about the rollercoaster of life, their busy household and attitudes towards epilepsy.Show notes: 1) We run through this week’s epilepsy news:• Listening to Mozart can reduce seizures in people with epilepsy: www.telegraph.co.uk/news/2020/06/16…eople-epilepsy/• An amazing six-year-old girl who looked after her mum when she had a seizure: www.dailymail.co.uk/femail/article-…ly-members.html• DevonLive epilepsy story www.devonlive.com/news/devon-news/…-wedding-42297992) Nominate someone in your life that has made a difference to people with epilepsy during the last 12 months for an Epilepsy Action 2020 award – www.epilepsy.org.uk/awards3) Michael and Paul Atwal-Brice adopted twin boys Levi and Lucas at the age of two. As the first weeks and months went on, they learnt their boys had severe autism, global developmental delay, severe learning disabilities and behavioural problems. When both boys developed epilepsy a year later, their world turned upside down. What followed was constant medical appointments, learning about how epilepsy would affect their family and the daily fear that the worst might happen.Through tireless campaigns for access to treatment for the boys and a passion to show that disabled people are not second-class citizens, the Atwal-Brice family have proven themselves a force to be reckoned with. We chat to Michael and Paul about their struggles, what daily life is like, their campaigning efforts and how everything they do is done out of love and joy for their family.Watch Paul and Michael’s Father’s Day video here: www.youtube.com/watch?v=4avb9FeN-po Paul’s #dancingdaddy video: twitter.com/AtwalBrice/status/1…77657260867584?s=20
ep 5 - Seize your adventure
After being diagnosed with epilepsy in 2015, Fran walked 500 miles of the Camino de Santiago in Spain two years later, solo. In 2019, she completed the 100KM Race to the Stones ultramarathon. We talk to Fran about adventuring with an epilepsy diagnosis, judging risk and how she doesn’t like the word ‘inspiration’. We also chat with Daniel Jennings, Epilepsy Action’s Senior Policy and Campaigns Officer about sodium valproate and the Cumberledge Review. (Chat with Fran begins 23:35)This week's epilepsy news:Leading epilepsy charities and health professionals have joined forces to urge decision makers and clinicians to prioritise epilepsy as lockdown eases and services resume. We talk about this and how Epilepsy Action are helping.The UK government has been urged to issue a "fulsome apology" to the families affected by sodium valproate, Primodos and pelvic mesh as a result of a two year review known as the 'Cumberlege Report.' We discuss the findings of the report and next steps.Last chance to nominate someone in your life that has made a difference to people with epilepsy during the last 12 months for an Epilepsy Action 2020 awardDon't forget to follow or subscribe on your platform of choice so you never miss an episode!