Epilepsy Support Group

[Crystal11]

Hello everyone- I thought I would write some about my experience today at Epilepsy Support group meeting. I have never been to a support group before and was not real sure what to expect. In college, I took a full semester course on group counseling and processing which I actually liked but wasn't real sure how a group meeting would be where I am a member and not the leader. Our leader Kelly is a neuro surgery nurse who has been around Epilepsy for a long time. She asked us to introduce ourselves, share some history about ourselves relating to Epilepsy and if we wanted to discuss something specific we could.
I was very surprised that we could all say the "E word" and feel comfortable. Normally between my twin and Rachel, my best friend- we can harass each other in a playful way about our seizures or Epilepsy, but outside of our house we would never mention it due to fear people may have. One lady told some about her history that was very familiar to my childhood-young adult life. I never imagined that someone would have a similar story to my own. Sometimes you feel like your all by yourself and it's really nice to meet someone that you can relate with. I even told of CWE and how I've meet people here that have educated me, shared stories with. Even if its online, it still feels like a family that all understands.
Some people have no one to talk to, not even their family. I noticed how many of us had similar experiences and stories to tell. It will be nice to be able to meet every month and have a new topic to discuss. CWE and having support group really makes a difference in coping with Epilepsy, a condition that many people still don't know enough about.

Since its November- I'm sure we will discuss ways to educate people around us about Epilepsy. The more people know, the better.

Next Epilepsy Support Group meeting will be December 7th 6:30-7:30PM. If anyone needs any info, PM me and I can give you more details.

Take care everyone, be safe.
Crystal

 

[BuckeyeFan]

We had a very small group in my area that fizzled out. It was not well attended and not really for me as it focused more on the children, which was great, just not helpful to me.

There is one just for men, but that is about an hour drive away on a week night.

Good Luck with yours Crystall

 

[Rae1889]

We have one here in winnipeg, but it meets Wednesdays at like 2-3. I'm always working, and there is no other optional time.

The epilepsy and seizure chapter never gets back to anyone (manitoba epilepsy foundation) to try and help you meet up with people. And the website is always down. I've sent many an email trying to see if there was a function to go to, or a group to meet with. But no replies yet.

But since I met Chris515, I'm convinced that we must be the only people interested about getting in touch with the foundation, that WE must be the foundation. And our own support group.

 

[seizingbeauty]

I attended 2 meetings here in Montreal. Most of the people were very nice but there were some that made me feel uncomfortable. i was willing to push past that but my PPO (PTA) meetings are on the same night. I choose to help my daughters school. Besides I feel much more comfortable with this group:hi5:

 

[Crystal11]

I am happy that Austin has set up another support group. Kelly, the leader said that they didn't have someone to run it before but now they do. There were 6 people total with a few more that didnt show and maybe they will next time. I think its definitley worth the hour and a half that we sat and discussed issues we had. I like how there is a topic and info they give us.

So many times, we don't get a chance to speak with anyone else, live and in person, but close friends or family. I like how we can meet people from around Texas and start new friendships. I just got an email from a couple that both have Epilepsy today- they want me to call them to visit with them and I think thats nice.
Its neat also to see how different my perspective of Epilepsy is since I've had it all my life- and others have just recently developed E.
Lots to learn from people.

I never realized how many things we all can relate to. Even here at CWE we learn fast how we all deal with very similar situations and everyday life. Makes you feel good that you're not alone.
Having Kelly, (who had Absence seizures when she was little), a Epilepsy nurse kinda gives you that chance to ask questions that are not from a doctor that kinda rushes things. She was able to talk and thats it- then we would answer questions and so on..


Everyone take care,
Crystal