Hi,
Our home page at
http://members.tripod.com/~Ted_Bergeron/youngsterssupport.html sure
needs some new poems, essays, articles for our Bill of Rights, etc..

If you havn't checked it out why not? I think you wil like it.
Thanks,
Ted

Hi,
Type 'epilepsy circle of support' without the quotes on your address
toolbar and you should get our home page.
Ted Bergeron

Hi there.  Oh boy are some still in the dark ages concerning epilepsy!!  This
makes me sad - there is still a long way to go for us.  These people do not
understand epilepsy and that really is the only thing - people must be taught
about this condition.  I will try to help you with this list:

     1.  Epilepsy is NOT a disease.  It is a condition of the brain that at
least 3 MILLION people have in the United States alone.

     2.  Epilepsy is NOT contagious.  One cannot possibly "catch" epilepsy
from another.  It does not spread like a cold bug.

     3.  Epilepsy is NOT a mental condition.  It is a MEDICAL condition and
must be treated as such.

     4.  Most of the time for people who do have epilepsy - there is NO known
cause for it.  It just is.  I woke up one day and just started having
seizures - who knows why - I don't.

     5.  People have written books about epilepsy and shared their stories
with the world. 2 of these books are " BRAINSTORMS: Epilepsy in our words -
by Steven C. Schachter, MD" and "RUSTY'S STORY - by Carol Gino.

     6.  the Epilepsy Foundation of America has their very own websight.
WWW.EFA.ORG....this foundation saved me.  It helped me to understand my
condition.  It made me realize that I was not alone.

I hope this small list helps you.  IT's important to realize that these
people are NOT afraid of you.  They just do not understand you.  I know of
the heartbreak though - mostly ALL who have epilepsy can tell you this.
Epilepsy makes you feel, kind of , seperated from the rest of the world - but
you are not.  NEVER are you alone.  Don't believe that for 1 second.

I hope this has been of some help for this person Ted...........Thank You for
sharing this with us................Christine Ford

HI TED,

I WAS VERY HAPPY TO SEE MY NAME IN THE LIST OF YOUR GROUP BUT, PLEASE
DONT TAKE ME WRONG.  I HAVE NO PROBLEM TELLING MY NAME TO THE REST OF
THE GROUP.  I THINK IF THEY WANT TO HELP ME THEY SHOULD KNOW WHO I
AM.  I'M NOT GUILTY OF ANYTHING.  I DID NOT ASK TO BE SICK AND I AM
NOT ASHAMED OF BEING SICK.

I LOOKED FOR YOU BECAUSE I NEED YOUR HELP AND BECAUSE I WANT TO BE A
PART OF SOMEWHERE.  SO IF WE ARE GOING TO HELP EACH OTHER, WE SHOULD
START TELLING THE TRUTH, THE WHOLE ONE.  PLEASE, DONT DO THE SAME
MISTAKE MY FAMILY DOES:  DONT TRY TO HIDE ME IN ORDER TO PROTECT ME.

THANKS AGAIN AND PLEASE, DONT TAKE ME WRONG.

LOTS OF LOVE,


MONICA ORTEGA
MONICA
mariepaix@...
mortegav@...

**
Friends,
I recived the email posted below tonight (I have removed the person's
name and email address for privacy). Please read it. It affects all
people concerned with epilepsy. If anyone has any sugestions of what
WE can do to help please email them to me at
tedbergeron@.... Perhaps the Epilepsy Circle of Support
should become more involved in the mattter that his letter discloses.
I believe in using positive influences to resolve all matters and I
would appreciate any ideas and help that this group
might offer. Our slogan has always been "Together we will make this a
better world or all", and now I need your ideas and help to try to
accomplish this.
Thanks
Ted Bergeron
webmaster Epilepsy Circle of Support
http://members.tripod.com/~Ted_Bergeron/epilepsyhome.html



I'M 29 YEARS OLD AND I'M EPILEPTIC (OR AT LEAST, THEY SAY SO).

I DON'T KNOW MUCH ABOUT THIS SICKNESS BECAUSE IN MY COUNTRY IT'S THE
SAME THING TO HAVE AIDS OR TO HAVE EPILEPSY: NOBODY GETS CLOSE TO YOU
FOR IF THEY CAN BE INFECTED. SO SINCE I WAS DECLARED "SICK" I'VE BEEN
SUFFERING PSICHOLOGICALLY, BECAUSE I'M CLOSED IN A "BOX" CALLED HOME
AND I CAN'T DO ANYTHING BECAUSE I CAN "FALL". I CAN'T EVEN SAY THE
VERB "FALL" BECAUSE EVERYONE THINKS I'VE HAD A CONVULSION.

SO TONIGHT, WHILE "SURFING" IN THE NET, I FOUND YOUR PAGE AND I
DECIDED TO ASK YOU FOR YOUR HELP. I NEED TO KNOW MORE ABOUT THIS
SICKNESS, BUT MOST OF ALL AND MORE IMPORTANT, I NEED TO KNOW HOW TO
EXPLAIN EVERYONE AROUND ME THAT THE CAN TOUCH ME OR HUGH ME OR KISS
ME WITHOUT BEING "INFECTED". AND THAT I CAN HAVE A NORMAL LIFE
WITHOUT LIVING WITH THE FEAR OF A "FALL".

I'LL BE SO GLAD IF WE CAN START "TALKING" BECAUSE AT LEAST I'D LOVE
TO KNOW ABOUT IT TO KNOW HOW TO LIVE WITH MYSELF. I JUST DREAM OF A
NORMAL LIFE BUT AS LONG AS I STILL BE FULL OF DOUBTS THIS "NORMAL
LIFE" I DREAM OF, WILL NEVER BE A REALITY.

HOPING TO HEAR FROM YOU, I REMAIN.

THANKS A LOT FOR YOUR TIME.

**
This is an invitation to have your story put on the Epilepsy Circle
of Support Youngster's site at
http://members.tripod.com/~Ted_Bergeron/youngsterssupport.html. You
can also nominate someone you know to receive our certificate of
appreciation for being a positive influence on your life.
Why not check it out and see if it is something worthwhile for you to
do. I believe this is a positive way to improve the lives of young
people who live with epilepsy.
Ted Bergeron

Hi everybody.  I hope you all are doing well.  It is another soggy
day here in New England and its COLD!!!  Like I said before I would
really like to get to know you all a little bit better and I hope I
am able to do this.  I know how tough it is to be a kid with
epilepsy--but you are strong and will get through it.

I remember I met a young woman a few years back and she was having a
BRUTAL time at school because she had epilepsy.  One of her friends
saw her having a seizure and wanted no part of her after this took
place.  Denise's heart was broken but what other choice did she have
- she had to stay in school and deal with this as best as she could.

To make a long story short - she made it to graduation day and I have
always put a lot of emphasis into graduating because the "real world"
is sooooooooooo VERY different then high school is when it comes to
things like epilepsy.  This is when you realize that you really have
been able to move mountains - not because you wanted to - but because
you HAD to.  Now there is a class that not many had to take!!!!
Amazing that I learned so much in high school --Denise too!!  It
really didn't have much to do with the classes that I took.  It had
to do with life - with reality.

I would love to hear from some who are being homeschooled also!!!
Homeschooling was not an option for me - if it was I would have
JUMMPED for joy and went on home to be taught.  I am sure there would
have been plenty of "lessons" there too....

thank you...........Christine Ford

******
I want to extend a warm welcome to our new members! You will find the
folks in this group to be very supportive and kind.
Don't forget to check out our home page at
http://members.tripod.com/~Ted_Bergeron/epilepsyhome.html

We have child profiles, essays, articles, poems, photos, campaigns to
recognize people who have been a positive influence on our special
children, and more.

We also have a section for children with epilepsy, seizure alert
dogs, advocacy, challenged martial arts, and much more.

if anyone has any ideas of what we are missing just let me know via
email to tedbergeron@...

Thanks and God bless,
Ted Bergeron


ted Bergeron

Hi there.  I hope that everyone is doing well.  I forgot to tell you
about my father in my first post.  My dad had epilepsy also.  I
learned ALOT from him--and I am so happy that he was able to share
all of his stories with me.  It was like my own little support group
right in my own home.

I am interested in starting a chat with you all in the chat room.
This would be a wonderful way to get to know each other more and talk
about issues.  If you have any special topics you would like to talk
about please let me know and we can do it!

For now though I would like to do this just to get to know the
members of this group.  So I certainly hope you send in the posts so
we can get this started.

Thank you Lots

Christine Ford

Hi there.  I hope everyone is well and in good spirits.  My name is
Christine Ford and Ted Bergeron was kind enough to make me the group
modifyer.  I am 31 years old and I was diagnosed with epilepsy at 16
years of age when I was a sophomore at Rockland High School here in
Massachusetts.  This was a very difficult time for me.  I knew of no
other in school who was going through this and I do realize that most
of you are probably going through this difficult time right now.  I
will do my very best to assist you on this journey.  So lets start
our new friendship & never forget............You are not alone!
Thank You

Christine Ford

I am pleased to announce that Christine Ford is the new moderator and
manager for this message board. In the near future I hope to have a
write up on her
on our homepage at htp://members.tripod.com/epilepsyhome.html

I am certain that Christine will do a great job and use her talents to
keep this one of the best epilepsy support mailing lists for young
people on the web!

Christine, Thank you for helping us out.
Ted Bergeron

Hello Everyone,
<P>
The <a
Href="http://members.tripod.com/~Ted_Bergeron/epilepsyhome.html">
Epilepsy Circle of Support </a>
has grown to close to 500 members within our various groups.  In
order to provide the best possible services I have decided to that I
need to let go of some of the control and let some of our members
take more control.  This was not an easy decision for me to make, but
it is being done for the good of our Circle of support.  This will
leave me more time to concentrate on our website.
<P>
The Epilepsy Circle of Support will be structured as follows:
<P>
                   Director:
    Ted Bergeron tedbergeron@...
<br>
                 Club Moderators:
epilepsycircle(Egroups) Sheri Meyer SheriM66@...
There are several other Epilepsy Circle of Support clubs that need a
moderator.  If interested please check out the listing of them at
http://members.tripod.com/~Ted_Bergeron/clubs.html .
There are 20 groups ranging fom general support, parents
support, youngsters, advocacy, service dogs, challenged sports, etc..

If you find one that you would like to manage the contact me at
tedbergeron@... with your name and email address.  Once the
moderators are selected they will have control to build up these
clubs with chat, responding to messages, and whatever their talents
allow.

I also need a helper in our Epilepsy Circle of Support webring.  Once
again, please let me know if you are interested.

Once the managers are set up I will ask for them for a brief
description of themselves, their goals, or whatever.  A picture would
also be nice. This information will be used for a new section of OUR
CIRCLE
so that everyone gets a more personal involvement with the Epilepsy
Circle of Support.

This is the first step to our reorganization.  I welcome any ideas
that you may have.  As I mentioned earlier, although it is hard to
give up the complete control of these groups, It is being done for
the betterment of our Circle.  This way other people have the
opportunity to lend their talents to make the Epilepsy Circle of
Support the BEST IT CAN BE.

Thank You,
Ted Bergeron
tedbergeron@...

The eGroups site will be off-line from 6pm Friday March 31st until 6am
Saturday April 1st Pacific Standard Time for scheduled maintenance.

We apologize for any inconvenience this may cause you or subscribers.
Please notify your subscribers of this scheduled downtime.

During this outage, the eGroups website will be unavailable.  Mail will
not be delivered during some of the outage.  Any mail received during
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Thank you in advance for your patience.

The eGroups Team

Hi Friends, My 11 year child who has epilepsy has developed unrealistics fears. She only feels safe at home, and will no longer leave home to do the things she used to enjoy. We will be meeting with a physcologist next week to discuss. I don't think we can get my child to leave the house to attend, so I most likely will go to the first meeting alone. Does anyone have any ideas about this unfounded fear. Any help is greatly appreciated. Thank you and God bless you all! Ted

The <a href="http://members.tripod.com/~Ted_Bergeron/epilepsyhome.html"
> Epilepsy Circle of Support<a> has a campaign to recognize and award
people who have had a positive influence on our special children,


<a href="http://members.tripod.com/~Ted_Bergeron/index-11.html">
Recognition Of Those Who Have Helped
Our Special Children Campaign</a> and a campaign to recognize people
who have had a positive influence on the lives of people with
epilepsy<a href="http://members.tripod.com/~Ted_Bergeron/awareness.html
">
Epilepsy Awareness Awards</a>
<p>
I believe that recognition and awards for those good folks will help
spread awarenes.  Please consider making your nomination.  All nominees
are winners!
<p>
Thanks, Ted Bergeron

I think I understand your daughters fears. My daughter has had epilepsy for
the last 15 years and is 20 years old now. She has attended home school
because of having had seizures at school. She has had gran mal seizures,
tonic-clonic, the big ones where she falls to the ground and jerks. She has
had several injuries due to the falls. She would like to go out more. She
does go to the store and out occassionally but if she goes out too much she
will have seizures in public. It's difficult for her. I think your daughter
would probably like to do the things she did before. She's probably going to
need time to adjust. I think your doing the best you can for her right now.

Kassie,
It was good to hear from you.  I hope that your medication changes go
well and are a help to you.
Ted

Hi
It is good to nowe that Kathryn is doing better.Also you to Jessie.
My dr wants to change my meds.Friday was a hard day.But today has been
good.I hope you are well.And if not that you get better.
bye love
kassie

--

On Sat, 29 Jan 2000 20:17:43   teddythekid wrote:
>
>My 11 year old daughter has started having seizures every night as she
>goes to sleep, as well as when she wakes in the morning. This also
>occurs during her naptime. These start wiyh twitching and arm and leg
>jerking and then
>go into full body rocking.  Have any of you experienced the same and
>can you explain a bit about it to me to help me understand?
>This has been going on for a month.
>Previous seizures in her life have not been at such predictable times.
>Thanks,
>Ted
>_______________________________________________________________________________\
______________________________________________________________________Dear Ted,

My mom sometimes has those kind of seizures if her doctor changes her medication
or if she has been sick.  If you have severe epilepsy, like Kathryn has,
sometimes when you are sick, your brain sometimes puts out more electricity,
causing some seizures, mainly petit-mal seizures.  Petit-Mal seizures can occur
more than once a day.  When I used to have those kinds of seizures, I used to
have up to 9 a day, even though they were small.  I also jerked like I was
having a bigger seizure, and became tired afterward because of all the energy
used while in the seizure.  I would advise  you to take her to the doctor and
see if she is having too much electric activity, and that way she can either be
put on a monitoring machine (they make some for people with epilepsy, my mom has
one) or try some therapy work on the brain.  It may be that right now, she's
just going through a stage where she is having seizures during sleeping times. 
If you need any more help, just e-mail  me anytime.

Sincerely,
Jessie Gray
>


MailCity. Secure Email Anywhere, Anytime!
http://www.mailcity.com

Hi,
I am just checking in to see how everyone is doing.  Kathryn
is doing much better, although she has a lot of seizures at nighttime.
A teacher from school has started comming in for an hour each day for
classes.
I will keep you posted.
Ted Bergeron

Friends,
I accidently posted a webpage on this mailgroup.  I deleted it from
the messgae board and apologize if anyone gets it in their email.
I was "experimenting" with eGroups and sent this page by mistake.
If you received it I am terribly sorry.
Ted Bergeron (teddythekid@...)

My 11 year old daughter has started having seizures every night as she
goes to sleep, as well as when she wakes in the morning. This also
occurs during her naptime. These start wiyh twitching and arm and leg
jerking and then
go into full body rocking.  Have any of you experienced the same and
can you explain a bit about it to me to help me understand?
This has been going on for a month.
Previous seizures in her life have not been at such predictable times.
Thanks,
Ted