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#1
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Stay Tuff--Do any of you go to support group meetings? --Did your Neurologist advise you of this? I feel this is EXTREMELY helpful for people with epilepsy and strongly believe that if you are not going (or don't even know), investigate in your area. You'll be very surprised an how uplifting this is. DLM |
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#2
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| Hi DavidLM, and welcome! I don't go to a support group, in part because I receive a lot of support from family and friends, and of course from this site. But I agree that a support group can be very therapeutic. It's great to have a place where empathy, understanding, and information are available. Epilepsy can be isolating, and group activities are good for the body, brain, and soul. My neurologist never mentioned any support groups (although she did suggest the possibility of a therapist if I felt I needed one.). My epilepsy nurse did mention support groups, however -- probably because she has epilepsy herself. Best, Nakamova |
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#3
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Wellllll the closest support group is 75 miles away, in a major metropolitan city, downtown, and only meets once a month. Usually at times that I'm at work. Granted, I could take time off to go, but I am also VERY navigationally challenged....and finding my way in that town is too stressful. This forum does more than an adequate job of supporting me at this point in time...... Thanks for the suggestion though! Btw, welcome to CWE. I'm sure you'll like it here...... |
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#4
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| I suggested it to my daughter when she was about 15, and she declined. No interest at all. I am sure I would use it if the same happened to me. So I commend your work in this program, and hope that you can expand it. I am in Pasadena area, and do not know of any groups other than through the Epilepsy Foundation.
__________________ Robin Neurofeedback - Rebecca's Story Feedback Matters- blog Knowledge is power and knowledge shared is power multiplied. -- Bob Noyce |
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#5
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| My husband and I went several times to a parent support group for special needs children with E organized by the Dutch Epilepsy Foundation. We didn't get a lot off new information but mainly discussed our kids and stories. These meetings were very emotional and each time we went home somewhat depressed afterwards. Later on I found an internet group (forum) which was far more informative and positive and we decided not to go to the meetings anymore.
__________________ Mom to an 12-year old boy with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection. |
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#6
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| Hi DLM, welcome to the forum. ![]() 1. No 2. No I created this site to fill that need for me. My wife has never had much interest in talking to people about her epilepsy. She is happy to do so if the subject happens to come up, but it's not something she goes out of her way to talk about.
__________________ New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads. Would you like to help support this forum? |
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