Loving this group

[imligia]

Hello all,

I'm pretty new to this site even though I joined about a year ago. Even tough I am usually quiet, I figure its time to introduce myself.

I am a elementary school teacher/ full scale sculpture/ violinist from Wilmington NC. I live and love the beach, camping, cycling, and hiking.

My history with epilepsy started when I was 3 years old and began to have what used to be called petit mal seizures. My family never told me I had epilepsy until I had my first Generalized tonic clonic (grand mal) at around the age of eight. It became hard for them to keep it a secret from a little girl who woke up staring into the face of EMT just about every other day. But I do give credit to them for their sincere honesty afterwards. Also for their push to not have their daughter denied anything. Also, never let this disorder stop me or scare me. That's pretty much become my own stance. If there is something that I want I will go get it no matter what.

Right now at the age of 34 I have become something of a loud mouth both around my workplace and around my town about epilepsy. I have found that their are about 25 students at my school who have diagnosed epilepsy and they are SCARED. So I became their shoulder to cry on as well as someone whom they could talk to. I remember all to well what its like to have friends one day, having a seizure, then the next day for some odd reason your friends have disappeared. That's elementary school for you.

Right now with the help of my doctor I am trying hard to establish a support group in my town for epileptics, especially for the soldiers who are coming back from wars with epilepsy and are scared and don't know what to do.

So that's me in a nutshell

I am glad this forum is hear.

[epileric]

Well welcome to the site. Glad you enjoy it, even if you have been quiet.

It's so great that you're as active as you are in advocating for people with epilepsy. I remember in elementary school how friends disappeared after a seizure, & mine weren't even convulsive. Sadly I've also seen in high school and as an adult.

I know there are a few people here who play instruments (I fool around on guitar but I'd be hard pressed to call it "playing"). Have you checked out Spebers Auditorium? http://www.coping-with-epilepsy.com/forums/f30/

[aimee]

i really like the sound of the effort you are putting into this we need more people like you around in this world way to go huni keep it up hugs

[Nakamova]

Howdy imligia!

I't sounds like you're being a great epilepsy advocate. Judging by posts of others here at CWE, there's a particular need for info for those in the military, so it's great that you're trying to make the support group happen. If you think that they would benefit, you might want to refer the students with seizure disorders to this forum.

Best,
Nakamova

[Endless]

Imligia,

Welcome to CWE. And WAY TO GO!!! A support group is a wonderful idea. Especially for military personnel. I know there are lots of military people who have seizures due to all the head injuries they got when they served overseas.

I'm glad you found us. Make yourself at home.

[PhylisFeinerJohnson]

WELCOME! You sound like a woman with many talents and terrific insights.

What I've tried to do is presentations to civic groups (Rotarians, etc.) to help raise awareness and even money for my local Epilepsy Foundation.

I've also participated at high school health fairs with fun information like: "Epilepsy Myths Go On...", Epilepsy Hall of Fame," etc. If you wamnt to "steal" any ideas, feel free to come to my website and print away!

Phylis Feiner Johnson
www.epilepsytalk.com