Epilepsy Self-help group...

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jezzabelle
Regular Member


Date Joined Jan 2005
Total Posts : 56
   Posted 3/9/2005 8:16 PM (GMT -7)   
... So I posted a month or two ago that I was trying to start an epilepsy support group on my very small college campus.  The first meeting was a flop- no one showed, except myself and the school nurse that was helping me.  Tonight I tried for a second time, expecting to be let down once again- but hah! One other person showed up, I guess that's better than no one, so it was me, this guy, and the nurse.  It was interesting brainstorming ideas of what we wanted to happen with the group and how similar some of our experiences with epilepsy were the same.  One big difference is that the man's seizures are hereditry from his father and they've been under control for a while, me on the other hand- no idea what causes them, and I've only been under control for the past 8 months (knock on wood!).  So now I have all this added pressure to make this support group work.  Just after posting how stressful life has been, I add something else to my plate!  I have to set-up a speaker to come talk to the campus, I'll probably ask my neurologist or another one from the hospital i go to- i've got my hook ups (which is not the best thing i guess, o well!).  I'm hoping to get the nursing students, science majors, and psychology students interested in the talk as well so there will actually be people that attend it!  The bad thing is I have well, about a month to set it up with midterms happening right now and spring break coming soon!  too much stress!  well, i guess this post was to share good news that someone showed up but also I guess I'm seeking for some advice about how to manage a support group.  anyone out there ever started and ran a support group before?  any good advice?  because i need any i can get!  thanks and I hope everyone is having a good week- i know mine is a lot better than last week!
~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


Graffixx_sk
Regular Member


Date Joined Sep 2004
Total Posts : 38
   Posted 3/11/2005 3:37 PM (GMT -7)   
Persistence will prevail and there are a lot of people that need this.

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 3/12/2005 6:09 PM (GMT -7)   
Sounds like a good start! I know it is scary to be in charge of something. Hoping it goes well when you can get a speaker.

hang in there!

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 3/12/2005 11:05 PM (GMT -7)   

Jessica-

I don't know if this is useful or not, but when I was in college, we had a group that met once a month and the group leader always assigned one person to  do the "advertising".  He would say, " Make sure you get the meeting posted in three different ways."  So, one month there would be flyers posted on bulletin boards,  an ad in the school paper and  an announcement over the school radio station.   Another month there might be flyers, ads and a table with info at the football/sport games. 

Anyways, we always had some people that came because of the "advertising", as well as the regular people.  Half the battle of having regular meetings is people feeling it's worth coming to, and if new people are coming, it's always nice to see new faces. 

Good Luck with the meetings :-) !   Glenda


complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


jezzabelle
Regular Member


Date Joined Jan 2005
Total Posts : 56
   Posted 3/15/2005 6:59 AM (GMT -7)   
Thanks for the advice Glenda! Yeah, I'm going to try to "advertise" in a couple different ways from now on because many people at my school tend to not check their e-mail plus our bulletin boards all over campus are filled to the max so you can't see anything. I would like to be able to have different people do different things- like one person do "advertising" or something like that- but in order to do that, more than me and another person have to show up the next time! I've been working on getting a neurologist to come speak, a bunch of people are really interested actually which is cool! well, thought i'd share an update! hope everyone's week is going well!
~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


Graffixx_sk
Regular Member


Date Joined Sep 2004
Total Posts : 38
   Posted 3/15/2005 3:45 PM (GMT -7)   
Jessica
Have you given any consideration to your local epilepsy foundation? My thought is that they would direct people that are in need of this service directly to you, I am sure that if you approach them they will be of some sort of help, now I would expect that the epilepsy foundation would send someone to overlook your setup or at very least have guidelines for your program to follow and you would be better able to to bolster attendence through there resources. Also local area doctors and schools should be made aware of times, locations, etc....
I work in advertising so a friend of mine (in marketing) and myself started playing with some rough numbers so as to produce some demographics that we came up with from your postings (just messing around of course) and from what we have taken in there are an est 2.5 million people in the central U.S. that have epilepsy which breaks down to a very small target audience you are attempting to reach (we are considering surrounding areas, all age groups and gendres) which is an extremely tough audience to reach unless of course your attempting a garage sale (ok I thought that was funny). I want you to know that I am so behind you on this and I would really like to see you succeed, I am currently trying to find a group for myself and it is tough which is weird because I live in a very large metropolitan area. Maybe I should start my own!

"Build it and they will come."

Steve

jezzabelle
Regular Member


Date Joined Jan 2005
Total Posts : 56
   Posted 3/16/2005 5:16 PM (GMT -7)   
My local epilepsy foundation actually has a support group a couple miles from my college- held at the bigger college campus here in madison. if all else fails, i might just join that group- i was just trying to start one here at my college. Our college nurse practioner has been helping me with everything which has been nice. I actually just talked to my neurologist and he's probably going to come in and speak to the campus sometime in may, hopefully! then i think in november- since november is Epilepsy Awareness Month- I might get someone from my local epilepsy foundation to come and talk to the professors here on campus and educate them about epilepsy and safety and such. i think that would be cool and educating. but anyways, just thought i'd update you all about how things are going. hopefully we'll have a speaker in may- let's knock on some wood!
~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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