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jezzabelle
Regular Member


Date Joined Jan 2005
Total Posts : 56
   Posted 1/13/2005 12:44 PM (GMT -7)   
I am new to this site and group, I've never actually talked to other people with Epilepsy.  I have a question though- has anyone started a self-help or support group before?  I'm starting one on my college campus because I think I'm at a point where I just need to talk to other people who have gone through the same thing.  This website is awesome, I just recently found it or I might have not started the support group.  But I was just wondering if anyone had any tips for me.  I'm just kind of going in there with an openmind, hoping we'll all get something from it!  Let me know your own experiences, if any. thanks!
"Carry on.  It is not easy.  But it is what we have to do- only we do not have to do it alone."
 
First seizure: 1993
Officially diagnosed: 1999
Type: Simple Partial to Secondary Generalized Tonic-Clonic Seizures
Cause: Unkown, all tests are negative for abnormalities...
Meds: 750mg Keppra 2xday


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/13/2005 5:00 PM (GMT -7)   
What a great idea! I hope your group goes well! I have not ever had one, all of my support has come from on line communities. I have 2 teens who have epilepsy.

Pointers? you first meeting set up some guidelines and rules
Keep info confidential outside the group


I sure hope you find some good support! If you have an Epilepsy Foundation affiliate around your area or American Epilepsy Society they might be able to tell you how to set up a support group....

Best wishes! Welcome here, too!

jezzabelle
Regular Member


Date Joined Jan 2005
Total Posts : 56
   Posted 1/14/2005 5:01 PM (GMT -7)   
Thanks for the tips, I was planning on setting up some guidelines and rules, thanks. Yeah, I have an Epilepsy Foundation in the city I live in, I haven't contacted them about it although I do know they have a support group for adults on a different college campus. If this fails I guess I'll have to try that one!
"Carry on.  It is not easy.  But it is what we have to do- only we do not have to do it alone."
 
First seizure: 1993
Officially diagnosed: 1999
Type: Simple Partial to Secondary Generalized Tonic-Clonic Seizures
Cause: Unkown, all tests are negative for abnormalities...
Meds: 750mg Keppra 2xday


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/14/2005 8:33 PM (GMT -7)   
the EFA can supply you with free pamphlets and things for your group too! Great idea!!Hope it goes well!

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/15/2005 8:32 AM (GMT -7)   
I have had them send me many things for free. Especially when starting a support group, the affiliate can and will give you things to help out.....I have been given free things for 3 years.

Emily'sMom
New Member


Date Joined Oct 2004
Total Posts : 4
   Posted 1/15/2005 9:38 AM (GMT -7)   
Rocking4Epilepsy said...
The EFA will only give a few free they do charge for them. They sell the the info they have.
They will send you a packet with a few items for free if youu want anymore they charge

Like any other organization, the EFA is limited in how much they can simply "give away."  Their available funding goes towards far more than providing information packets.  They also fund research and other efforts to bring awareness to the community.
 
When we were new to epilepsy, the EFA sent us a very generous packet of information- far more than I expected to receive when it was offered to me.  There were booklets for my boys to help them better understand their sister's seizures (two Seizure-Man comic books and a book written by a 7 yr old girl with epilepsy), pamphlets for me to distribute to family members, teachers and babysitters with first aid/safety info and other info about epilepsy, and several things for me to read.  I am very grateful to the EFA for helping me to become much better educated about epilepsy and for helping me find a community of others dealing with the same issues.

jezzabelle
Regular Member


Date Joined Jan 2005
Total Posts : 56
   Posted 1/15/2005 9:47 AM (GMT -7)   
I have recieved a ton of stuff from the EFA after contacting them and telling them I was doing a speech about Epilepsy in one of my college classes. thanks for the tips!
"Carry on.  It is not easy.  But it is what we have to do- only we do not have to do it alone."
 
First seizure: 1993
Officially diagnosed: 1999
Type: Simple Partial to Secondary Generalized Tonic-Clonic Seizures
Cause: Unkown, all tests are negative for abnormalities...
Meds: 750mg Keppra 2xday


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/15/2005 10:02 AM (GMT -7)   
That is great! So neat that you were able to do that speech too!

jezzabelle
Regular Member


Date Joined Jan 2005
Total Posts : 56
   Posted 1/19/2005 6:17 PM (GMT -7)   
Any suggestions on what I should bring to first meeting? I don't want to be too over the top, I mean should I just go and have nothing or should I bring some pamphlets? This is starting to stress me out and on top of that classes just started again... I think I've gotten myself to deep, I mean what if no one shows, that would not be cool. Sorry, i'm just venting and don't know really what to do, I mean, I'm 19, I've never organized a support group before! ahhh.... alright, sorry... any suggestions?!? they would really help :)
"Carry on.  It is not easy.  But it is what we have to do- only we do not have to do it alone."
 
First seizure: 1993
Officially diagnosed: 1999
Type: Simple Partial to Secondary Generalized Tonic-Clonic Seizures
Cause: Unkown, all tests are negative for abnormalities...
Meds: 750mg Keppra 2xday


try2bhappy
Regular Member


Date Joined Nov 2004
Total Posts : 163
   Posted 1/19/2005 8:04 PM (GMT -7)   
I would think you could just cover the very basics at the first one and find out what others who come are needing support in and then take it from there. Get their needs and ideas also and then things could fall inplace. I think you will do great. My husband and I are going to a suppotr group for Epilepsy next Tuesday. I have Epilepsy and it has become very uncontrolled. Which has been stressful on us and our familys. i think it will help my husband and me alot .Let us know how it goes. Mary

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/20/2005 2:27 PM (GMT -7)   
You can print out some basics from Epilepsy.com or the resources here, have those pamphlets and see what people want....


I hope people do show up for you! If they do not, you decide whether to give it a rest for now and concentrate on classes or to push to advertise more (Like putting up flyers places and telling the affiliate you have this group)

Hang in there !!!

YOU can do this!! Best wishes! Life is a journey where you learn as you go.

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 1/22/2005 9:11 AM (GMT -7)   
This is so great that you are starting a support group and you are here asking questions. It is wonderful that you care so much and are willing to take time out to help others. THis is what it is all about. Educating others. This is another reason I wanted to be a nurse so bad. I hope that everything with the EFA works out and you can get the materials you need to move forward with this great idea Best of luck to you, Tracy
 


jezzabelle
Regular Member


Date Joined Jan 2005
Total Posts : 56
   Posted 1/26/2005 7:05 PM (GMT -7)   
Wish me luck, I have the first meeting of my support group tomorrow! I am so nervous and scared that no one will show up :( I guess I can just hope for the best!
"Carry on.  It is not easy.  But it is what we have to do- only we do not have to do it alone."
 
First seizure: 1993
Officially diagnosed: 1999
Type: Simple Partial to Secondary Generalized Tonic-Clonic Seizures
Cause: Unkown, all tests are negative for abnormalities...
Meds: 750mg Keppra 2xday


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/27/2005 7:34 AM (GMT -7)   
Hey, good luck today! Hoping it all goes very well! Hoping you get some who turn out for it and it goes just fine! I am sure you will do a good job!

jezzabelle
Regular Member


Date Joined Jan 2005
Total Posts : 56
   Posted 1/27/2005 7:14 PM (GMT -7)   
Hey, just wanted to let you guys know how the support group went- well, not well, actually no one showed except me and the nurse of the college. I thought this would be a problem because it is a pretty small college. I'm going to try to organize one more meeting and then if that doesn't work then I'll try to go to the support group that my local Epilepsy Foundation holds. I guess I'm just really disappointed, I mean, I'm a shy person and I was really going out of my way to start to fit in with others with Epilepsy and then no one showed up. I wasn't even nervous about speaking in front of people which is out of the ordinary for me, I was just nervous that no one would show up. O well I guess, I'll just have to try again. Thanks for the support everyone!
"Carry on.  It is not easy.  But it is what we have to do- only we do not have to do it alone."
 
First seizure: 1993
Officially diagnosed: 1999
Type: Simple Partial to Secondary Generalized Tonic-Clonic Seizures
Cause: Unkown, all tests are negative for abnormalities...
Meds: 750mg Keppra 2xday


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/28/2005 7:43 AM (GMT -7)   
I am so sorry no one came! Is there a way to advertize it more? Tell your EFA Affiliate so they can help promote too?

So much work and the nerves to get ready. SO Sorry!! keep trying. I am a shy person as well and doing presentations has been so good for me and I feel like I have helped people through them...

try2bhappy
Regular Member


Date Joined Nov 2004
Total Posts : 163
   Posted 1/31/2005 7:30 AM (GMT -7)   
I am so sorry no one showed up for the support group. How frustrating that must of been. It is good to hear you are going to try again. Good Luck Mary

Graffixx_sk
Regular Member


Date Joined Sep 2004
Total Posts : 38
   Posted 1/31/2005 10:19 AM (GMT -7)   
This is such a wonderful idea; I blew off the group thing for years however as the seizures got worse the denial got dealt with and part of that was through group. Make the groups presence very well known and very accessible to anyone that may need it and will take off.
Graffixx

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 2/4/2005 7:35 AM (GMT -7)   
Jessica, I am sorry that no one showed up the first time. I only wish I lived by you and I would go to the support group. :) It is a great thing you are doing. Give it another try. These internet support groups were great for me when I was diagnosed. I needed them so bad and feel so lucky to have found others here. I was so sad after having to delay nursing school. It was a bump in the road but hey what are you doing to do? Let us know how it goes next time and good luck. Tracy
 


jezzabelle
Regular Member


Date Joined Jan 2005
Total Posts : 56
   Posted 2/4/2005 7:39 AM (GMT -7)   
Thanks tracy and everyone else for the encouragement. I really needed it after no one showing up. I feel like I'm doing something good for other people as well as myself but then no one comes so I feel like everything I've done has been a waste of time. It's good to come here and read that my efforts aren't wasted. Thanks much and hopefully i'll be scheduling a new meeting soon!~Jessica
"Carry on.  It is not easy.  But it is what we have to do- only we do not have to do it alone."
 
First seizure: 1993
Officially diagnosed: 1999
Type: Simple Partial to Secondary Generalized Tonic-Clonic Seizures
Cause: Unkown, all tests are negative for abnormalities...
Meds: 750mg Keppra 2xday

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