Meeting People Who Have Epilepsy

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Crazy Monkey

Crazy Monkey

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Last night it dawned on me, that before I met up with Brain last week, I had never knowingly spent any time with people who have seizures as all of my friends and family are seizure free and I have never attended any support groups etc. Until I joined CWE I had never even spoken to a single person who has epilepsy.

I was wondering if this was the case for other people on CWE???
 
Same here

It was only 9 months ago when I went to the Epilepsy society of British Columbia where I talked with others who had E. and only about a few months ago did I meet someone else with E. & we haven't been in touch.

I did know someone else in high school who had E but his seizures were less severe than mine but he had this attitude that he could do less & was always scared he would get hurt doing simple things & that bothered me.

Not many others in over 48 years.
 
Crazy Monkey said:
Last night it dawned on me, that before I met up with Brain last week, I had never knowingly spent any time with people who have seizures as all of my friends and family are seizure free and I have never attended any support groups etc. Until I joined CWE I had never even spoken to a single person who has epilepsy.

I was wondering if this was the case for other people on CWE???
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CrazyMonkey:

Hi. I receive quarterly newsletters from the local chapter of the Epilepsy Association in my town telling me of how much fun they have at their get togethers, but I never get any announcements of their meetings & I've called them asking to send me info, but they never return my calls. So, until I discovered CWE, I really had no one who could empathize or understand my situation because they're all seizure-free, just like your friends & family.
 
None of my friends have epilepsy/seizures. Also no one else in my family has it. I guess I'm lucky that I have it.
 
I've attended Epilepsy foundation meetings and used to help with golf tournaments for the Epilepsy foundation. One time, a member's father played golf and I kept an eye on him while his father was golfing, and he did have a CP seizure. Last year, while attending a walk, I witnessed a young girl having a tonic/clonic seizure. And last summer at a Barnes & Noble store, I witnessed a young man suffer a TC seizure. Of course, everyone else panicked. Poor guy. One lady had the audacity to say that he was probably on drugs! The idiots in this world!!!

Cindy
 
I was 44 years old when I developed epilepsy and I had never met anyone else.
I never did until several years ago the old Brain Talk had a very active epilepsy chat room and 7 or 8 of us met at a motel in Chicago for a wonderful time together.
 
I never met anyone in my entire life!
Until recently at a Support Group I
went to - just a couple, but never had
the opportunity to speak with them.

However, I post to others on forums;
but with CM - it was fun, it was the first
time being able to talk with someone.

But of course we didn't talk about "E".

:tup:
 
I use to go to support group that's how I met my husband.

a bunch of ppl that lived around Atlanta got together that I met on line first.

I have several friends in NY I met through a group I coordinate for ppl who have epilepsy u write letters snail mail. I've gotten to know several of them really good all over the country.


:e::soap::agree:
 
I've joined support groups and meetings for parents. But in particular thanks to our parent internet forum in Holland I've met many other parents and their childeren with E. in the past 6 years. Sharing experiences, information, emotions and support has become a very important part of my life and I've learned many things I wouldn't have learned without these contacts. Concerning the ketogenic diet contact with other parents is very helpfull.
The friends I've lost since I got a severe handicapped child, are replaced by precoius new friendships with people who do know and understand my situation and who are not scared or insecure to have contact with my special needs son. We're lucky Holland is a small country so distance is not a big issue in meeting eachother.
 
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As for me I chat with people on Facebook, here of course, VNS Board, and I met one person at the hospital I had surgery at. Since I met him we kept in touch to keep in other posted and cause we know what it is like with "E". He had been through alot more than me. Went through 4 brain surgeries for the Neuro-pace. His got infected then of course didnt work so had to be taken out. So he still has seizures but sure has a great and positive attitude.
 
We have met people coincidentally that have epilepsy (ie. a stranger at the store for example), but never sought out a support group or people on E forums.
 
*chuckle* Nope CM. Actually, when I was in college, I started an Epilepsy support group for students that attended that college as well as people from the community. It was great to be able to talk to others about our common experiences and questions. We had a neurologist that would meet with us once a month and answer questions if he could, as well as presenters from EFA.
 
I saw someone have a seizure in college and became friends with her. We hung out for a couple of years until she was offended by an e-mail joke I sent her and decided she didn't want to be friends anymore.
 
Long ago I went to a meeting with others at the local epilepsy center. However they moved across town & I had no way to get there. But I did volunteer for them a couple times. At the zoo passing out info & treats at halloween and at a golf tournament. I also met a friend online. Her, her DH and me & my DH had dinner & went to a concert. (It was near Christmas & she gave me a gift. I have a package/gift for her that I'm hoping to mail today, if my son can take me to post office.)
 
I think I saw someone with a seizure when I was a kid (lets see, I'm 29 now...). That was my one and only experiance. I am the only one in my family and it came late in life (ok, I'm not really 29....) so I don't really even know what happens when I have them. My family is relatively vague in the details mostly I think to spare my pride, what little I keep. :pop:
 
Paradise survivor,

When I a senior in H.school at N.I.H. back in 1980/81 .The doctor recorded me on tape having seizures ask m eif i'd get hysterical if he showed it to me.
I saw myself on tape having seizures ,and found out why it's so scary for ppl to see.
You could alway sask you neuro to see old VEEG if he's done any yet or when he does any. Belinda
 
Belinda

I also have video evidence of myself having a seizure (absence) it was my Uncles birthday, I was carrying his birthday cake into the dining room, the lights were down low and the cake had flickering candles. I was set off into a seizure straight away, I missed the singing of 'Happy Birthday'.
 
Over 45 years ago I knew my friend's brother had epilepsy but I never saw him have a seizure. Today, even, I don't know anybody with epilepsy except all of you on this website, and the people in my doctor's office. The ones in my doctor's office are up close and personal so I see varying degrees of epilepsy all at once, and I did see a man have a tc on the sidewalk and helped him stay calm until the ambulance came. Nobody in my family has ever had epilepsy either. I hope nobody ever gets it.
 
I have several friends who have varying forms of epilepsy. If they would not have told me, I would not have known about it. One very outspoken person had a presentation done by the EFA.

I had one roommate in a hospital have seizures. She was in her 60s, did not take meds and was administered medication via an IV. Honestly, the first seizures I saw were horrifying. I could not get out of my bed to help her. My doctor walked in one day as she was blacking out, asked me what I thought was wrong with her. I knew it was epilepsy. The medical staff responded pretty quick to her seizures after that.
 
I learnt something new today, my Uncle who I travel with, his Mother, when she was alive used to have tonic clonics. I had known her for a number of years and I never would have guessed that she had seizures. So I did know someone with seizures and just didn't know it.
 
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