I have been nominated as a ‘Epilepsy Hero’ via a phone call from Epilepsy Society asking me to attend the Queen’s Patrons Lunch in London, taking place June 2016.
It turn’s out that I had won a place, via being nominated by my wonderful Epilepsy specialist nurse at Southmead Hospital in Bristol, UK.
I go the extra-mile as a Epilepsy Hero to help raise awareness about Epilepsy. I also live with the condition too, for over 30 years. I’m learning more and more what it’s caused by for me.
Watch the 2016 Short Film from The Queen’s Patrons Lunch, by Epilepsy Society
I was nominated as a Epilepsy Hero, to attend the Queens Patrons Lunch in June 2016 – by my wonderful Epilepsy Specialist Nurse, Helen Hodgson at Southmead Hospital in Bristol.
Click HERE – to read why Helen Hodgson is such a special Nurse in Bristol.
It’s a fantastic opportunity for me to attend, not only as a person with lived experience of Epilepsy, but to represent Epilepsy Society, the great charity that has helped me, as well as others with the life-long neurological condition.
Watch a recent short film, where I talk about Epilepsy, as well as the Epilepsy Awareness Day at Disneyland I volunteer at in America.
ABOUT MY EPILEPSY (JUNE 2016)
More recently I’ve been told I have one maybe two brain lesions, tumours maybe. I’ve also been through a barrage of tests Video-EEG, fMRI, Neuropsychology. And in 2016 I’m doing a few more, a longer two week Video-EEG, a PET scan, another fMRI – they make me exhausted.
I’ve been considered for Brain Surgery, but if I went ahead with it now, then I would become 80% more disabled as the tumours are too deep in my brain to get to, so Surgery is not an option.
So instead, I take it, one day at a time.
The side affects of the AEDs I take, make me very tired, sick, dizzy and with headaches galore. My vision gets affected, hearing too when i have auras and absences, I seem to loose track of time when they hit. Anyway, now age 41 I’ve come to terms living with it, accepting it, and not worrying about it (too much).
But of course, stigma hits when you talk about Epilepsy and Seizures and Brain Surgery to others, including.. Employers.
Yes, I’ve been discriminated by employers. In Job interviews with staff being ignorant, to staff themselves when working on jobs. Thankfully when working in media and broadcast this hasn’t affected me much, as people ask me about it.
As I am at peace now with Epilepsy and Brain Tumours, I am Happy and content – I constantly talk about it – at events and conferences. I help to run Epilepsy First Aid training to corporate companies , and as a journalist/reporter I help to generate media content, such as radio interviews, television interviews, podcasts and creating short films.
I even volunteer my time to help with the amazing Epilepsy Awareness Day & Expo at Disneyland Resort in California ( www.epilepsyawarenessday.org
Plus locally in Bristol (South West England), I help to co-run the non-profit Bristol Epilepsy group ( www.bristolepilepsy.org.uk )