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Thread: Why Do You Prefer Facebook?

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Question Why Do You Prefer Facebook?

    ((((((Former Members))))))


    While reading a thread on Forum Feedback regarding adding a Thank You option to our posts, and the discussion as to how we can make Braintalk more appealing to our former members, who have flocked to Facebook, it occurred to me that the best way to determine that is to ask the former members.

    So, I'm asking our hundreds of former CN members:

    Why do you prefer Facebook?

    Would you return to Braintalk/CN, if it became more like Facebook?

    If Braintalk had sexier skins, more color, more flair, would you return?

    What is missing at Braintalk, which you find at Facebook?

    Do you still lurk/read here?

    If not, why not?

    If so, why don't you post?

    Do you no longer need the support you once received here, because you've found it elsewhere?

    I'm not on Facebook, and I never will be, so I have no concept of its attraction or benefits. I'm truly curious why so many, or actually the majority, of our former members have abandoned CN.

    Among the handful of us remaining here, who are also on Facebook, I would ask:

    Why you are still on CN and posting here?

    What do you find on CN that you cannot find on Facebook?

    Now, I realize that asking former CN members, who are no longer posting here, to post an answer to these questions, will not likely result in a large response. Those former members may: a) not visit here to see my post, or b) not want to post their response here.

    So, those of you, who still post here and on Facebook, if you would like to posit these questions to former CN members on your Facebook page (or however it is done there, since I do not know) and copy and paste responses here (anonymously), then at least we could have a better understanding of why they haven't returned. And it might save Mike Weins time and effort in trying to recruit our former members by dressing up the place.

    Since discussion forums, like Braintalk, are so last decade, we are probably barking up the wrong tree with our hopes of regenerating the community and participation we knew in our heyday. Pre-Facebook, Twitter, Texting, Skype ... whatever shiny thing that garners our attention now ... Braintalk and CN were our home. In one day, CN could pile up as many pages of posts as we currently have in 6 months. We have FOUR pages of posts, and only very few of us posting regularly.

    I'm just so curious as to why everyone ran away from CN and haven't looked back. What do you get there that you don't get here?

    Unfortunately, I'm prepared for no replies to this post. But I still needed to ask. And, I remain hopeful for responses.

    Love & Light,

    Mom to Jon, 49, (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.

  2. #2
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    I'll start.

    First and foremost with me not posting as much is the obvious. With Amanda gone I feel more like someone on the outside looking in these days. I am so out of "practice" on having a special needs child that I don't know if I am even relevant anymore to what people are looking for. Meds have changed in the last 4 years and things she was on may not be even be prescribed anymore. IDK. I just can't seem to turn loose of this place. I guess its that feeling of this was my home, and the first place I found the support I needed.

    Second, I wonder how many people "lost" CN when they crashed last time. Since it was a new site, new address,etc... And being down so long, people have to find other ways to connect. FB is an easy way to stay in touch with people that you connected with.

    FB does have a CN group on it. I think people are asking their questions there. Alot of names I don't recognize but there are always the oldies posting there. No one is directing them back to this forum.

    I will probably always like this type of forum. It easier to follow and its cleaner.

    It's sad to see how slow this site is now. I used to spend so much time getting support and giving support. But just as you know with the other site, it's hard to keep them going if people quit participating.

    I figure eventually FB will be a thing of the past too. People will move on to the newest form of entertainment. I spend alot of time on FB but not alot of time posting. More reading than anything.

    Just my 2 cents.
    Carrie mom to Amanda my new angel 12-29-07.NO LONGER DXD Multicystic Encephalomalcia, Acryptic CAH, Loved to watch mtv hits, wrestling, 3 stooges, Andy Griffith and Spongebob Square pants.

    And Josh 21 year old brain.

  3. #3
    Distinguished Community Member
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    Waltham, Ma.

    Post I prefer F/B., because,.......................................... ....................

    that's where I go to find all of the people from my past. Old school friends, etc.


  4. #4
    Distinguished Community Member houghchrst's Avatar
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    Honestly I go to FB for the entertainment factor. We pass around inspiring and humorous pictures. We can be political in our views, 'religious' on our pages, post potty humor, funny videos. There are little entertainments, games you play with your friends, family that you can chat with throughout the day that you may rarely see. Many things that are not allowed here and I think that is a good thing.

    My FB life and my BT life are completely separate. There is no privacy on FB. Everybody pretty much knows your business so you do have to be careful. I do not visit the BT FB page because I want to keep the life I have here as private as can be expected. Yes it is simple to find me here if you actually take the time to think about it and deliberately look so by not having BT stuff on my FB page I am not even giving the glimmer of an idea. I have talked about things here that I do not and would not want on FB.

  5. #5
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    So. Calif.


    I had no real desire to be on FB and actually I started my page FB page (and Twitter, which I quickly dropped) to keep up on Grants condition cause he wasn't doing well when BT crashed. My daughter started using my page to keep the family and friends updated on my condition when I had my aortic dissection. I have kept the page to keep track of people who showed up there. I rarely post anything, haven't added pictures, or personal information, mostly I just read about their lives. There is no privacy there and no personal connection. Everything is pretty much out there for the whole world to read and I have no control on the content of what people post (the more graphic posters I de friend cause I can only take so much). I come here for support with Tyler and to meet up with old friends. I do miss the old group, wonder how they and their children are doing and wish things here were like they were. It gets lonely out there and the rants and raves on FB are only a diversion, not a place for support. Here there are rules for conduct that keeps the place user friendly for everyone. FB is pretty much a free for all and I honestly don't enjoy that. I really don't see FB's appeal. If superficial is what you want, go to FB; if support and understanding is what you want, come to BT.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  6. #6
    Distinguished Community Member houghchrst's Avatar
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    If superficial is what you want, go to FB; if support and understanding is what you want, come to BT.

    Well said Tamie. That's exactly right.

  7. #7
    Distinguished Community Member tic chick's Avatar
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    Oct 2006
    Detroit, MI


    hey everyone !

    thank you rose for starting this thread. i hope you don't mind that i put my thoughts here, even though i am not a former member of the child neurology forum. i think this is a relevant and needed topic to talk about and since it's here i'll share here.

    i also think of my fb and bt life as 2 different things! i could never get as serious on fb as i do here. fb is mostly a way to express my personality through music, quick thoughts, funny slogans and political posts. bt is my spiritual home, where i can give and get support. it's much more personal to me. i have some friends here who are my friends on fb also, but mostly fb is for my circle of friends that do not come to these forums because they have no need to.

    yes, we lost a lot of people when bt crashed in 2006. a lot of people have not come back since the new format of the forums has changed and because the archives could not be integrated into the new format. i don't know if it's fair to try and compare fb with bt. you could not write in as much detail and share as much while still remaining relatively anonymous on fb as you do here.

    other comparisons:

    facebook has a "newsfeed" page where you can see what your friends have posted while you haven't been on facebook. bt has the "new posts" tab at the top. i don't know if the new posts tab is designed to just have the most recent posts or if it keeps up with the person using it; meaning if i haven't been to bt in 2 days, will i see all the new posts that have been posted since i last was on bt?

    fb has a profile page where you can list your favorite movies, music groups, etc. this is another "personality" feature of fb. bt also has a profile page, which i think is under-utilized by people who want to put more of their "personality" out there. sometimes we tend to think of ourselves as "diseased people" instead of as "people with diseases". also, if we are caregivers of adults or children with neurological problems, we still have our own interests and personalities...we are not just "caregivers".

    fb has a photo album feature. bt does also.

    fb has a private message feature that you can send a message to anyone in your circle of firends. bt does also.

    fb has an "instant messaging" service that you can chat with your friends in real time. bt also had the chatrooms, which were hardly ever used! when i started coming here in 1999-2000, the chatrooms were in full swing! i had no reason to post in the forums because i received all my supposrt from the chats. then the chats started failing, people left and with the crash they were gone. i think if you're unable to use the chat feature on fb then you wouldn't use it on bt either.

    fb doesn't have any advanced emoticons you can post with. they have a heart and the basic smilies, but nothing else. bt has a wide range of emoticons for personal expression and for fun. maybe some additional emoticons relating to caring might be "get well soon", "i care", "i'm not feeling up to posting today", "i'm just reading today", etc. i don't know if these emoticons are even possible because i don't know where bt get's their emoticons from. is there an emoticon store "?

    i think fb and bt have similar features, but fb and bt are for entirely different purposes. i don't think fancy "skins", a "thank you" feature or anything superficail is going to bring back the people who are not posting here anymore. if you understand how to post pics and slogans and your thoughts on facebook, you can do the same thing here along with the other features bt has.

    facebook calls itself a "social networking" site. bt is a forum for "people with or caring for others with neurological problems". to me, those are 2 distinct places to post.

    yes, people always want to try the newest shiny toy available. i think a lot of people are going to have probs using facebook as much because fb is switching everyone to the new "timeline" have NO choice...your page will definitely change and a lot of people are going to hate that or it's going to take them time to figure out how to use it.

    bt is a unique site. yes, there are other neurological forums that are similar, but bt is superior to them, in my humble opinion. bt does have a long-standing reputation as being the first forum of it's kind. i know the changes have caused confusion to many and some people are not happy that the archives weren't able to be carried over.

    IMHO, with all of the above being said, i think with bt's reputation and it's continued presence as a neurological forum, people will come back and new people will find out about us through search engines and maybe even through the facebook page. i think we just have to weather out this storm of ennui that bt is experiencing right now. once people get tired or disenchanted with what is available now, they will realize what was here at bt for them...

    because as dorothy said, "there's no place like home."

    Last edited by tic chick; 03-02-2012 at 08:39 PM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

  8. #8
    Distinguished Community Member andromeda31's Avatar
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    Oct 2006



    A great question Rose! I do LOVE fb....mostly because I have a large family....over 30 first cousins and a lot of them are on fb so it is a way to keep up with my family I might only otherwise see just at Christmas and funerals. I actually get together more often with old friends from high school and my closer cousins because of's easy to set up a coffee date with a friend via fb. I also recently played my french horn at the high school basketball game with a friend, only due to fb, she put a post that she was going to the game (and it was band alumni night) and was anyone else going...I had seen it in the paper and didn't think about it, but knowing she was going, I sent a msg and we had a great time playing at the game with the high school pep band! 2 of my cousins and I actually took on planning the family xmas party this past year thru communicating on fb and it turned out great and we had almost all the family attend. Without fb, I don't think those things would have happened. I did post a lot about Caitlin on there, when she was so sick from 2008-2010 it was a great way to keep family/friends updated on what was going on with her. I do miss BT active it used to be! I do check here every other day or so and read what is new....I should post more often than I do, I am guilty there! :) I like BT fine the way it is, I don't feel it needs to be jazzed up....I think I would 'hang out' here longer if it were more active. I spend much more time on fb simply because there are way more posts to read on it. I do play some of the games too so that sucks up more time. I do feel like I have to hold back more on fb though when I post about Caitlin. Not everyone there on my list understands like y'all do....I know it irritates my mom (who is not on fb) when she sees family and they talk about what I post. I guess one of my cousins (who I barely really know, they grew up far away) said that I must be 100% depressed...whatever! That really annoyed me and since hearing that I have cut way back on what I put about Caitlin there. She actually is doing pretty well lately so that helps too! Not a ton of news there to share. So basically, I think if it were more active here on BT, I would be here more....which I suppose is a vicious circle! I do think the big crash didn't help...can't think of any ideas really to attract people back to BT. I do really miss the way it used to be though!!!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7) babies are all getting so old!!

  9. #9
    Community Member
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    Indianapolis, Indiana


    Well, first I want to say that I came here originally to learn more about spinal disorders and chronic pain. Everyone was and is very helpful. I don't post much anymore simply because things are status quo and I would be repeating myself. I still read but really have nothing new to contribute.

    It was my daughter that had me to get involved with FB and I am glad she did since she is out of state. So, I will go with what Ponygirl stated; good way to find friends from the past, talk with my family and have fun. For instance, I just found a good high school friend who has spinal disorders and lives in the neighborhood right next to me! I would never have found her here or her I. Now we are making plans for the summer. :o I was also looking for a good landscaper last spring. I found another old high school friend that was in the landscaping business. Again, I never would have found him here. Furthermore, anything and everything I could possibly be interested in is on FB. So, for me, it is "one stop" shopping. There are various Groups I belong to and they are very active; genealogy as an example. I also like taking and posting my own videos and that sort of thing. Anyway, yes, you should be careful about what you post on FB but that holds true for any site. Bottom line is...I enjoy FB very much! I just hope BT takes off on FB because I believe other people will find it so much easier. :o Perhaps Mike, if he so desires, could make BT on FB a "closed group" and maybe others wouldn't be so fearful of privacy. Just a thought...
    C3/C4 ACDF - 2004, C5/C6 ACDF - 2006
    L5/S1 - Facet Degeneration
    Lumbar Facet Rhizotomy L4, L5, S1 (left side) 2007
    Retired - DOD/Defense Finance & Acctg/IT - 2005

  10. #10
    Distinguished Community Member Jo6's Avatar
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    South Carolina

    Default Hello All

    I don't normally post hear either, but I do read sometimes. I have grandchildren and some have problems. I do think they could benifit from this particular forum, but I can't make them. I can read here and sometimes find info and try to pass it on.

    I am a member of Face Book, but not by choice. Someone else joined using my name, profile and picture. My sister told me she saw my page and was glad I had joined. Nobody ever owened up to it, but I felt like it was a grandkid that should know better.
    Once you are a member they WILL NOT delete your account. I tried many times, but it just won't happen. I seldom go there, I get emails from FB telling me I missed some things I would be interested in. they always have 3 or 4 of my relatives picture and say something about missing something they had posted on THEIR page.

    To me Brain Talk is an Online Patient Support Groups for Neurology. I searched for this over 13 years ago, MGH-Chats and Forums for Neuro Support was the only one I found so I logged on and joined. I've been here ever since.

    I first came here to get help in caregiving for Alzheimer's Patient's. I had suddenly found myself caring for my MIL who suffered from Alzheimer's. I can not say enough good things about the Alzheimer's Forum, they did indeed support me for those 13 years. Although my MIL died in May 2011 I still frequent the forum hoping to be of some help to someone else.
    In the meantime I discovered I had a number of Neuro problems myself, so I go to other forums here at BT!.

    Face Book is exactly what Jeannie said,a social networking site! the 2 don't even compare, IMHO!

    I love my family, children, grand's, siblings, their familes, but they can not help me with my problems. If I asked for help nobody would even dream of answering. They are their to socialize.

    If that is what one wants in their lives, then they have found a place to do it, but if you need support or want to encourage others, then Brain Talk is the place to go. I have "invited" many of my extended family to join BT. I hope they will, or have already. I don't have to know if they are posting here at BT. I've been singing BT 's prasies for many years.

    Tamie and Jeannie and Christina all pretty well says it all.

    It's alright if some want more "frills"to brighten things up, but to me it means more stuff for me to have problems with and have to spend Mike's time trying to help me get back to where I can post.

    I guess that pretty well tells you I don't prefere FB over Brain Talk. I think we lost many members when we were down so long without any word as to whether BT would ever come back. Someone opened a group of support forums, tried to make it like BT. I went there a few times while we were down, but I didn't like it, the ones that "created" the new one made no bones about critizing BT, John Lester and anybody that had anything to do with BT. I thought that was a bit trashy of them so I just stopped going. I think that is where many of our members went and may still be there. I haven't been there in years so I wouldn't know.

    If each of us that have been here a long time would take a little time to invite people here we could start building. I will take us all though. AS to the Thank you, good job, the count and all that , well if it goes that way and it works, good. If not we could just drop it. My opinion would be not to go that way. I'm only one in those that are members.

    When I first joined I had to jump in with both feet running to get the hang of things. It's much easier now, but if you join then you also are a member equal to any of the lest of us.
    So, Jump in feet first and start posting. I have posted and never got a responce. that didn't stop me. Stand Tall and be Brave and Sing Brain Talks praise!

    Jo, the long winded

    btw, there is no place like home and we are under a Tornato warning and I'm loging off to get to a safe place! I don't want to meet up with the ugly ! Stay safe everybody!!
    Last edited by Jo6; 03-02-2012 at 12:53 PM.
    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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