Hi RobinN
I am so glad that I found this website and joined, it's so important to talk about our experiences, and more to the point share them with each other, I think it will halp me with the book.
It's National Epilepsy Week here in the UK soon, and last year, I managed to get the local BBC radio station involved in raising awareness, and they interviewed me, I know this may sound daft, but I really feel that I was kinda "chosen" to hav eepilepsy, and to devote as much of my time trying to stamp out ignorance, I would love you to tell me how epilepsy is regarded in teh USA, here in the UK, people are just so ignorant and scared of teh condition, I mean it's as common as insulin dependant diabetes for gods sake, I've lost 8 jobs because employers just cannot deal with it. I usually have an aura, then either Complex Partial, very rarely secondary generalised leading to Tonic Clonic, I'm having probably 4 or 5 Complex Partial a week on a bad week, but on a bad day, I just have aura after aura, it is absolutely terrifying having the aura! I used to see a man in a 1930's cobbled street, and he'd be pulling his collar up against the wind, and looking at me, I get the epigastric rising, the taste, the smell, it is awful, the docs have advised me against having a bath while I'm on my own in the house, as for some reason, I have a lot of seizures in the bathroom, it must be love though, as Mark has picked me up off the bathroom floor after I've fallen off the loo! Luckily he is a paramedic, and a firefighter, quite a handy guy to have around bless him! I've always been determined not to let the epilepsy rule my life, and I sort of stick my fingers up to it, I try and make light of it all the time, and talk to as many people as I can about it, I like to think that by being so open I've raised awareness in a few people.
I'm going to try and get the media to do some sort of feature on epilepsy during that week, I was lucky enough to talk in The House of Lords in London on epilepsy and employment, and the Commonwealth Institute in Kensington, I just feel so strongly about raising awareness, and helping all those people in the coming years to maybe have an easier ride than some of us have had.
I decided to study Epilepsy Care & Management with Leeds University in 2004, and I'm nearly finished, I hope I get the qualification as I would love ultimately to work with people that are going for surgery and hoep to quash their fears and worries about it. I had a Hippocampal Carvenoma removed in 2000, and had 5 wonderful years seizure free, it came back with a vengeance in July 2005, I lost the license that I only just got the previous year, and yet another job. I was over the moon when my specialist said that he'd found another area that could be operated on, and now they are going to remove my right hippocampus as it is just not working due to the sclerosis, I am just so worried that my memory will be worse than it is now (can that be possible?!) I just hope that I will be able to drive again one day.
I hope I haven't waffled on too much, please write back and tell me about yourself, and the American perspective on epilepsy, I think over here people still think we are possessed by Demons, I'll leave you with this last comment that this guy said to me one day...."Why don't you drive Elaine?" I said that I had epilepsy.. he said,after looking me up and down...." Wow, you don't look like you've got epilepsy!" I was totally incensed, "What the hell am I supposed to look like?!" I shouted. Says it all eh? Hope to hear from you soon.
Cheers
Elaine
I look forward to reading your posts. 
:evil2: :hj:
