Thursday, April 20, 2006

Talk on the board...

My.Epilepsy.Com has a lot of good information on epilepsy as well as message boards and chat rooms. I ran into a pretty good discussion on how people struggle to maintain a "normal" life. Here is one of the posts on that page:

I remember when my epilepsy showed up, how frightened I was. My whole world as I knew it, changed. I was 15, active in sports at school and outside of school. That changed with the T/C's, drop seizures and hard jerks. I found out who my friends really were and lived in fear that I would have a seizure at school, a school function or game.

Yes, I learned to work around them and they became a 'normal' part of my life, but I will never forget the shock and fear of when they first came to be. Little was known then and it was not something that was talked about by anyone.

I adjusted, but it was not an easy adjustment. To have a means of reaching out to others with epilepsy would have made such a difference back then. It is so wonderful to have that now and that no one be made to feel hesitant to be here. I have learned so much on this site and it has been such a emotional outlet with the 'talk therapy'. Laughter is wonderful too and so needed.

1 comment:

Anonymous said...

you dont want nothing to do with epilepsy ,com myepilepsy,com or anything relating towards it.the owners are saps,.
banned last year from the place for bringing some true stories up which one was my own.
if you ever had trouble at a hospital,they ban you.plain and simple a hospital just about killed me durring a seizure.was beaten up badley by police and lost a tooth,they refused to give me meds,refused to give me phonecalls,they refused to tell my family i was ok,and overall---neurologists from two floors above pleaded that i needed treatment-not jail for unconcious behavior.
tis a very long story,maybe a bit scary in the end but overall,i was banned for seeking support for such a thing after being on the site years.
its about money to them.warren,patty,etc i emailed them all and im now told to get lost instead of support.