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Thread: Facebook Epilepsy Support Group

  1. #1

    Default Facebook Epilepsy Support Group

    Some of us from here on BT also started a support group on facebook. Join if you'd like. It's a closed group and you'd have to ask to join. My name there is Sandy Howe Salmansohn.
    Link to the support group is: https://www.facebook.com/groups/614290505260222/

  2. #2
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    Check.


    Linnie

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Question

    ((((((Sandy)))))) ~

    Since Mike Weins and many of our BT members are attempting to improve BT and retain members, as well as attract new members, I am curious why you and others started a Facebook support group.

    What does the Facebook group offer, which the BT Epilepsy forum doesn't offer?

    We've been losing BT members to Facebook for years, and since I'm not on Facebook, I would really like to understand why people seem to prefer Facebook to BrainTalk, their home for many years.

    Mike Weins is contemplating removing a huge chunk of our forums to streamline BT. Some of us are offering suggestions to keep BT active and appealing to existing and new members.

    I am saddened to see a post here inviting our BT members away from the BT Epilepsy forum, because my son has epilepsy, and I need the wisdom of our members to help me, when Jon has a crisis. But, if everyone is posting on a private Facebook forum, to which I have no access, because I refuse to join Facebook, then I am deprived of that wisdom and support for my son.

    Likewise, any other BT members, or visitors to our BT Epilepsy forum, will be deprived of that insight, support and compassion.

    What is there, which you can't get here?

    Why is Facebook a better place for you to communicate about Epilepsy than BrainTalk?

    Epilepsy ~ a common neurological condition. When the communication in BT's Epilepsy forum withers to nothing, and it is eliminated from our forum community, then we've really shut out a lot of people, who could benefit from discussion about epilepsy, seizures, drugs, side effects, interactions, diets, and on and on.

    I haven't forgotten when BT was peaking, and how active our forums were, and the amount of information and experience, which flowed through our forums. My son, Michael, had intractable seizures, and I received so much help from the BT Epilepsy forum. I just do not want to see this forum become a ghost town.

    Please help me to understand why you choose Facebook over BrainTalk. I truly would appreciate hearing your thoughts.

    Regardless of where you choose to communicate, I wish you and all members health and well being.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    I see it as an augmentation, not a replacement. I know that I go to Braintalk and facebook . We are on facebook, as friends. On Facebook we connect with others and show the rest of our lives and interests. Sandy has her questions and her life ;Others their interactions with their small children; some their humor and consternations. For the cost of an internet connection, My 157 facebook friends have gone to Six continents and are now in Florence this week.

    Linnie
    Last edited by linniec; 01-24-2014 at 07:06 AM.

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    Distinguished Community Member Jo6's Avatar
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    Rose, I am with you. I learned 2 of my granddaughters were having seizures. Then last year I learned that I was having some of the worse kind, at least to my knowledge.

    I was trying to find some info about seizures so I dug around in the EPP. Forum. AS it turned out I went to the Child Neuro Forum and have found it most helpful. It's scare's me to know at the age of 71 I suddenly started having seizures. I was grateful to find so much information in CN.

    It has been a hard road to go down and I don't think Face Book has any thing to offer me that Brain Talk has to offer. Quiet frankly to me it feels like a slap on the face for some one to come on to BT and invite them to join forum's from Face Book.

    We aren't a social media group. We come here to learn what we can about the problems we go thru everyday.

    If I have offended anyone I am sorry. I didn't post here to offend anyone. I am just upset at this invitation to join this group. There are many other groups that can be joined if someone is not happy with Brain Talk.

    Someone enrolled me in Face Book, put my picture on it also. I have asked for several years to please delete my account. They will not do that. I have no respect for Face Book and doubt I ever will.

    So, Rose we may be the last 2 members at BT, but I will never take part in anything concerning Face Book!

    Thank you CN for being here when I needed you. Jo6
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

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    ((((((Linnie)))))) ~

    Thank you for responding.

    I realize that Facebook is the social gathering place, but Sandy's invitation mentioned "support group." Of course, I can appreciate augmentation, and everyone should be where they feel most comfortable and have their needs met.

    However, what I've witnessed on the sidelines here is an evacuation of many of our former members from BT to Facebook. Not just in the Epilepsy forum, but many other forums ~ well, maybe ALL of our forums.

    In its heyday in the early 2000s, BrainTalk was incredibly active, and it was a powerhouse place for extremely valuable information, experience, and insight from people, who were struggling with neurological conditions. I don't know how many members we had on our Child Neuro forum, but I considered every one of them to be my friend, and we shared our personal lives, humor, daily vents, and more (still do) long before Facebook was imagined. Nothing hindered our socializing. We had email, and one of our members had a private forum for emergencies, if BT was down, or for sharing super personal things, which we didn't necessarily wish for the world to know. But we never abandoned BT for that private forum. We posted frequently in both places.

    For the cost of an internet connection, which was dial up in those days for most folks, we developed rich, long lasting relationships with others, who are rowing in the same boat as we are.

    In those years, when I posted on the Epilepsy forum with questions pertaining to my sons, dozens of members responded with their experiences and suggestions. Now, when I post here for Jon, perhaps two or three faithful members will reply.

    If I didn't know anything about seizures, but suddenly I had to know to help a loved one, and I searched the 'net and found BrainTalk's epilepsy forum, I wouldn't bother joining or posting, because there is no activity here any longer. I would search out forums where people are posting regularly with lots of helpful information. But it wouldn't be on Facebook.

    It seems like BT folks have flocked to Facebook, and maybe occasionally drop by BT, have a look around, see that it isn't active, leave and don't return for months. If folks are active on Facebook, but not here on BT, then their choice has been made. To me that seems like a replacement. I'm not implying that this pertains to you, but to me, the absence of our once bustling membership screams that it is for most members.

    I keep asking (and have a few times over the past few years) if those, who prefer Facebook, could tell us what we could do at BrainTalk to make it as attractive and appealing as Facebook. I don't think there is an answer.

    It's just sad to me to see the decline in participation here at BrainTalk, because I remember vividly, when this community was the pioneer and the alpha dog of internet forums. And in our times of rebuilding and refurbishing, all of Mike's hard work, and members' input to improve the BT community, it is disheartening that the first post in the Epilepsy forum in a month is an invitation to a "Facebook Epilepsy Support Group."

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Jo6)))))) ~

    I'm so glad that you found the help you needed on the Child Neuro forum. We may not be as plentiful as we were once, but those of us, who post there regularly are dedicated to helping anyone, who needs our help.

    I pray that you and your granddaughters are seizure-free. If you ever need any help, please feel free to post on CN. We'll be there for you.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  8. #8

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    I get tired of hearing same old same old. That's what I'm rarely here anymore. The support group on facebook is there when we want to talk about health issues, but we've gotten to know each other so much more talking about a variety of other things as well. Heck, I didn't know until yesterday how well Linnie speaks French. And Howdy Dave still has his dry sense of humor but a spiritual side to him as well.

  9. #9

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    For me, BT is just too much of the same thing. It's one thing for me to talk epilepsy, but not day after day after day. If I need to talk about it that much, maybe I need to talk more to doctor.

    Okay. That's not exactly true. It's good to talk about my condition with others who understand but it can be obsessive if I'm not careful. Where I think about it too much. Where it becomes who I am. I also am wary of letting advice from people I don't really know have a major influence on choices I make.

    Besides, I like variety, light hearted humor, and of course my QUESTION OF THE DAY. (Inside joke).

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    ((((((Sandy)))))) ~

    I think it's great to have a place for social interaction. And that seems to be the preference for many of our members now, who have flocked to Facebook.

    While BT is oriented toward sharing experiences and information relevant to neurological conditions, I don't find BT to be non-social. Lots of forums have "chit chat" threads each month. Our more active forums, like CN and MS, are social, as well as informative. In its heyday, as I said in my previous post, BT was buzzing, and many of the conversations were social.

    The problem arises, when members vanish and don't participate on our BT forums. How can we socialize if no one is here?

    More importantly, how can we help each other, if we aren't here?

    Last March, my dear friend's son was struggling with status, and I posted here requesting information/experience from members about Keppra. Only a few members were here to post in response. I can do research all day, but nothing compares to real life experience. I was saddened that during a crisis, this forum, which was once a bustling, helpful place, was virtually vacant.

    I understand not wanting your entire world built around a neurological condition, and I would never suggest that you or anyone feel compelled to discuss your condition. But you may have the wisdom from experience that another person needs to hear. And, if you aren't here posting, that person will not benefit from your wisdom.

    As I've said in other threads through the past months of discussing changes/improvements to BT, it is up to us, the members, to make BT what we want it to be. Mike Weins has asked us many times for input, and it's on us to give him our ideas. Of course, I am not privy to your (inside joke), but if you think a Question of the Day thread would perk up BT, suggest it to Mike. Or run it up the flag pole in one of Mike's global threads, and see if any members salute.

    If BT is static, it's because we've allowed it to become that way. It was once the busiest community on the internet. But it's old hat now, I guess.

    Friends and support are wonderful, wherever we find them. I'm glad for all of you that you have a place to gather and share.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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