My experience in the Northeast Regional Epilepsy Group Support group
I found the Epilepsy Support group to be a very welcoming and caring atmosphere for all involved; the patient, the caregiver, the spouse or the sibling.
This group has a very open and casual forum to discuss concerns, share personal experiences or just to be with people dealing with the same situations, concerns and challenges. Validating the fact that you are not alone in dealing with epilepsy as an individual, caregiver or family member.
I originally started to attend these meetings on a regular basis for informational purposes over five years ago in order to understand how one’s life is affected by this disorder. I was about to marry a man who suffers from epilepsy as a result from surgery to remove a non cancerous brain tumor. I needed to find answers, asked questions and speak with people would share their experiences with me. I was scared of the future and I wanted to make sure I was making the right decisions for both of us. I wanted to be there for him and be aware of how this would impact our life together. I also need to make sure that I understood what I was going to encounter and wanted to make sure I was up to the challenge. So, I searched the internet for information and came across this support group and that is exactly what I found, a group of people willing to share information, their trials and tribulations as they embrace their condition and forge a life for themselves with epilepsy. I’ve encountered many people over the years, each story is unique due to the cause of the epilepsy (born with it vs. head trauma) as well as the outcomes (medications, procedures), but at the end of the day we all come together to help one another each in a different way, to gain insight, comfort as well as make friendships. Five years later my husband and I continue to attend meetings for our own well being as well as hoping to offer the information / help to someone like me five years ago. As for my husband he likes to discuss his concerns and challenges with his peers.