In September 2018, we asked our Facebook community what was the one piece of advice they would want to give to someone who had just been diagnosed with epilepsy. Our Marketing and Communications Executive, Paige Dawkins, talks more about the responses we received.
Emma was diagnosed with epilepsy three years ago, but has been seizure free for around a year. She has recently started doing some volunteer work with epilepsy charities such as Epilepsy Action doing awareness presentation training in schools and workplaces and is currently undertaking an accredited volunteer position with them. However, she is keen to expand her volunteer work into sharing her story and is keen to help with raising awareness in any way she can.
Debbie Jackson is currently feeling positive about her epilepsy. She is a personal assistant at a media company in Canary Wharf and feels supported by her boss and colleagues. People have been very good in understanding her condition when she has had a few seizures at work, but this has not always been the case.
A book about what? Why? Oh! There’s always an oh! I wrote a memoir about living with epilepsy. Living with epilepsy: a contradiction in terms? Would the word ‘surviving’ be more appropriate? Perhaps, for some, for many. When the idea was first suggested to me I laughed out loud. That nervous laugh, the one wreaking of self doubt and ambivalence. Then, after a particularly bad cluster of seizures I decided to give it a go- I had nothing to lose and there’s only so many times you can watch Bruce Willis save the world barefoot.
Dr Hugh Selsick is a consultant psychiatrist working in sleep medicine, based at the Royal London Hospital for Integrated Medicine. Here he talks about insomnia in people with epilepsy, and how a type of therapy, CBT-i, can be used to combat sleeping problems.
Dr Simona Balestrini, the Muir Maxwell Trust Research Fellow at Epilepsy Society and Honorary Clinical Associate Professor at UCL Queen Square Institute of Neurology, has embarked on a three year project using a pioneering technique to look at the activity of the brain in people with epilepsy. Here she explains what she hopes to achieve in her work with Transcranial Magnetic Stimulation (TMS) used in conjunction with electroencephalography (EEG).