I: When I was younger, I had a chance to go to college and university. But my epilepsy was diagnosed when I was 22 years old, and it was a real, real shock. I think the problem with my seizures were, they were non-convulsive seizures, they were what you call complex partial seizures. I think one problem is that everyone hears the word epilepsy and thinks of someone convulsing on the floor. So when you’re first diagnosed it’s a real, real shock. I was quite fortunate when I was diagnosed, my aunt had a close friend Veronica, who also had epilepsy, and she came round and gave me some great advice and support. And that’s just what one person can say – what can a lot of other people say? I found out about an epilepsy group, I joined my local group in east London, and they’ve been stuck with me ever since!
L: We’ve been through some ups and downs. A lot of ups, but quite a few downs. At first, when he was first diagnosed, it wasn’t too bad because he had complex partial seizures. But, the last five years he’s been having the tonic-clonic seizures, which are more difficult to deal with. The first one was a real shock. I wasn’t really sure what to do, because he’d never had one before, and it was panic stations. I was trying to sort him out, luckily my daughter was there and she was ringing the ambulance, and it was real panic. But we’ve learnt a lot through the years and it’s a lot calmer now when he has his seizures. But you always have to be on alert, listening, because he also has them at night times. You sort of sleep with one ear open in case you hear he’s having a seizure, so you can go to his aid. Also, he’s recently just broken his bed with a seizure, which was harrowing! You walk in and there he is, on the bed, and it’s all sloping! So, it can be all disturbing and worrying, but he’s still here, he’s in one piece, and we manage to cope.
