Re-post from several months ago --> Ep. General Websites -->
Below is reduced (in volume) websites I posted and about 5, which
others added of their suggested sites, for information related to
Epilepsy, Seizures, treatments etc.
The one website/group that Dave recommends near end has more
detail on Sudep (Sudden unexplained death from epilepsy).
That group you have to Register and set up an ID.? to be able to
access or post there. I didn't go look at what else was involved.
G./ -->
The First Aid Site, that lists what each seizure type looks like,
is at ***s below. Inside that link is another one for First Aid in
Water (swimming). If the page has a coloured background, there is a
button that says "Printable Version" and if you Click on that, it
takes off colours so you can print it on White Paper to keep.
A new site (to me) someone suggested is at http://www.epilepsy.com
.
The main Idaho Epilepsy News site is at http://www.epilepsyidaho.org
..
(Julie Walton posts here regularly and maintains the Idaho Website for
people there and us too. )
Within that are links that also go through an Education area called
Learn about Epilepsy -- at http://www.epilepsyidaho.org/learn.htm
.
Often some symptoms people **exhibit give clues to *type of seizures
they're having and best described on a First Aid for Seizures Chart.
These are my favorites -- also from Epilepsy Idaho. One is
http://www.epilepsyidaho.org/seizure2.htm
and that links to
http://www.epilepsyidaho.org/seizure.htm
. One of those is easier to
print, although both display well for information or reference.
There is also a separate page for First Aid in Water.
What to do when someone is swimming is somewhat different that if they
were to collapse 'on land'.
/////////
Howdy Dave has a site he put together ~10? years ago and he regularly
updates. He was also one of the oldest :-< members of this group and
someone told me he was one of the Founders too.
His site is at http://www.howdydave.com
.
//////////
The main U.S. Ep. Foundation website is at http://efa.org
. This site
has a Medication Glossary, although I found my own pharmacist a
useful source of information if I had Side Effects or Questions about
a
particular prescribed pill.
// G./
2 From: howdydave
Date: Tues, Jan 31 2006 8:52 pm
Email: "howdydave" <>
Howdy!
Another good site is the BrainTalk Forums.
There's a LOT of good information there.
G./ The www address to this one was changed (by the company?) to the
address listed further down these mails. /
3 From: guitarmom
Date: Wed, Feb 1 2006 8:00 am
Email: "guitarmom" <>
Groups: alt.sup****t.epilepsy
Great sites! Thanks G for adding them. I find so much information on
Emedicine to help understand seizures as well as the syndromes, EEG,
and variants. it is based on articles that neurologists have written
and peers have edited and reviewed. There is a place for definitions
as well -->
http://www.emedicine.com/neuro/topic415.htm
You can do a
search there for all things epilepsy or neurology as well.
http://www.neuropat.dote.hu/epilepsy.htm
Internet handbook for
neurology has a great number of quality sites as well. this is
compiled by a neuro in Hungary.
Ginny
4 From: howdydave
Date: Wed, Feb 1 2006 11:41 pm
Email: "howdydave" <>
Groups: alt.sup****t.epilepsy
Let's not forget:
Strathearn Neurological Access Point
aka: SNAP
http://www.sol.co.uk/k/keir/snap1.htm
Set up by Dave Ferguson (the REAL founder of this group) in Scotland.
5 From: Rocking4Epilepsy
Date: Wed, Feb 8 2006 12:01 pm
You also may find all your first aid and safety precautions on our
site below http://dannyjr.proboards44.com/index.cgi
*** Note-- above site you would have to Register and set up
information to access the links. I haven't done that, but poster has
posted semi-regularly to here over last year or more.
6 From: polaris
Date: Thurs, Feb 2 2006 2:54 pm
Email: polaris <>
BrainTalk looks very good. (listed above at #2 )
Thanks for the suggestion.
7 From: guitarmom
Date: Thurs, Feb 9 2006 8:37 am
Email: "guitarmom" <>
Another great site that I have found is
http://www.epilepsy.ca/eng/mainSet.html
if you go to the opening page where it has English or French it does
have a flickering candle. This page does not have it.
There is a great deal of information here, well done and easy to
maneuver.
Basic facts, myth busters, info for children, teens and adults,
research, safety, coping!
Hope this helps someone.
Gin
From: "howdydave" <>
Date: 23 Nov 2006 08:56:34 -0800
The BrainTalk server crashed a while ago and
it is at a new URL these days
BrainTalk - Epilepsy
http://brain.hastypastry.net/forums/forumdisplay.php?f=144
Since this is a new server, old participants need to re-register
the first time they want to post to the NEW BrainTalk.
BTW: Lots of other forums on BrainTalk too... see:
BrainTalk Communities
http://brain.hastypastry.net/forums/index.php
Dave
Newsgroups: alt.sup****t.epilepsy
From: WaderFam
Local: Wed, Jan 17 2007 11:19 pm
Subject: Re: Websites of use to newer people
Wanted to also add this site. My daughter in law runs it.
Wanted to invite you to our forum on epilepsy. Including safety
precautions and SUDEP. We have almost 500 members and over 20 forums
for members. Its free and easy to join hope to see you
http://dannyjr.proboards44.com/index.cgi
/// End of messages I collated. G./ //
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