Support groups helpful? And why so hard to find?

[ddr1166]

Hello, everyone - me again, more questions!

In the beginning of all this (before we found this site), I looked EVERYWHERE to try and find a local support group for adults. It was virtually impossible.

Questions:

1) We live in DFW area - it seems ODD to me there is only ONE support group for adults, but so far that's it for Dallas. Why do you think that is? I've tried all the organizations, and all the websites I found online for organizations were actually belly up (I drove to three locations that showed "active" online, and no one was there - no business, nothing.)

2) Are they really that helpful? I've never been to a support group. This forum has helped so much, not sure it's even needed.

3) Are people still afraid the stigma of seizures will affect others, therefore, they don't want anyone to know?

Thanks,
D in Dallas

 

[epileric]

1) We live in DFW area - it seems ODD to me there is only ONE support group for adults, but so far that's it for Dallas. Why do you think that is? I've tried all the organizations, and all the websites I found online for organizations were actually belly up (I drove to three locations that showed "active" online, and no one was there - no business, nothing.)

I know where I used to live there was only 1 support group for epilepsy. I really didn't expect much more

2) Are they really that helpful? I've never been to a support group. This forum has helped so much, not sure it's even needed.

I guess that would depend on how they're run, what types of personalities are involved & what you're looking for in a support group.

3) Are people still afraid the stigma of seizures will affect others, therefore, they don't want anyone to know?

I believe people are still afraid of the stigma of seizures. As an example Celebrities and Musicians usually don't seem to have trouble sharing their medical problems if it's cancer, parkinsons disease, or diabetes but I've never heard a celebrity or musician discuss their seizures & I believe it's because of the public reaction.

 

[carlos.fonke]

A new support group formed in my area recently, and I went to two of the meetings. It was small in attendance and even smaller when you counted those with epilepsy, rather than family members. Some of the few who did attend apparently did so sporadically - well, like me. This forum is much more helpful to me than the meetings.

More attendance would have helped, of course, but it was also telling to me that when I missed one meeting due to a family member's illness I didn't receive any more emails from the organizer about the group. She also didn't call as she had done with prior meetings.

I'm sure organizing the meetings is a tough job, but a certain degree of professionalism would have made a big difference in my case.

 

[ddr1166]

Thanks - I agree about the celebrities - the only one I've ever been able to find who admitted it was Danny Glover (but I'll bet there are a few more).

 

[Nakamova]

I think the quality of a support group depends on the individuals who are members and who run it. As you say, it would help if the organizer were more on top of things, but she may be doing it on a volunteer basis, or limited in time and energy. I also think on-line resources like CWE have filled the gaps left by the less-successful support groups. Local support groups can still play a role though, especially in providing information about local services, advocacy organizations, hospitals, etc.

 

[Crystal11]

Hello. I live in Austin and I actually had to call the Epilepsy Foundation of South and Central Texas and ask about a support group. They said that because of low attendence at other support group meetings, that they weren't going to hold one. They said that when more people call in and request for one, that they would call me and let me know.
A few months later, we had a support group set up and I let them know that I could not go outside of the Austin area for it. We now meet here in Austin and most of us do live here. A few people come from San Antonio where the E Foundation is.
We hold it at a library classroom for about an hour to hour and a half and it can be stressful. A lot of time I leave in a bad mood- or thinking a lot about how I grew up (not really understanding what was going on, Mom not being supportive) other times I leave in a good mood and find it helpful to hear others' stories.
This last time, we held it in a Burger King since the library was closed for the 4th of July weekend. It was sort of strange that we would hold it in a very public place!
We sat in a group and talked about the doctors around the Austin area, comments and concerns about treatment and meds and other Epilepsy related discussions.
This time around I wasn't able to hear hardly at all. The tile makes it real hard for sound to travel and normally causes sound to bounce up into the air rather than at the walls. My hearing aids didn't really help a lot so my roommate interpreted the best she could for over an hour! Most interpreters only sign for 20min intervals then stops and switch out to prevent injuries or strain.
Anyway- wow a little off topic sorry.

I believe that support groups are IMPORTANT but CWE is a great place to start. And sometimes I feel more comfortable discussing some things here. Some members of the support group are brand new to Epilepsy and are stressed and have a lot of questions and often tell their story, which is normally going to be long to begin with.

A lot of time, its sort of like a check-in and see how everyone is doing, any concerns or questions and most times its about living well with Epilepsy.

I would call the San Antonio office and ask if there is one for Dallas/Fort Worth area.

Take care
Crystal

 

[ddr1166]

Thanks, Crystal! It sounds like it's the same situation here in Dallas. I do want something positive and not something negative, so I think I'll stay with this forum. This has all been really helpful! Good luck and thanks again so much. D

 

[Crystal11]

In most E group meetings, its good and possitive- sometimes is more stressful with newer members.
Its good for others to meet other people like themselves with Epilepsy. Everyone can talk freely and don't have to worry who hears.

If you want, I can talk to our group leader and ask if there is anything she can do for DFW.

This site is awesome and many awesome people.

Crystal