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Thread: Why Do You Prefer Facebook?

  1. #11
    Distinguished Community Member Barque's Avatar
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    Question

    I joined FB years ago but could never get back in since I forgot my screen name and password. I tried a few times but it lead me on an endless loop to nowhere. I just gave up. :ambivalence:

  2. #12
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    Gosh, Rose, I was going to copy and paste your message on the CN fb page, but I see that I don't need to do that! So many have chimed in here :) Well, I use everything online. I am very active on facebook for the odd personal/family update, like photo of my garden or something like that, but mostly to share my blog and advocate for political - disability stuff. I share lots of news articles on disability and social inclusion that I think are interesting. I have my twitter linked to facebook, but only so that my blog can go out on twitter automatically. I don't use twitter other to post my blog updates. I do the same on LinkedIn. I come here for neuro Mum/Dad friends and I have many here. I do love my friends here, old and new. But I was discouraged when CN was down for a long time and also, when I posted about my book coming out and gave a link to the listing in Amazon out of pure ecstatic excitement, I was told that was spam and was nearly expelled from the site. Micky had the same experience when she posted about her sewing business for kids with disabilities. I think that I felt comfortable and then had a realization that perhaps CN wasn't so private and safe after all. Someone from my past found me and my posts here by googling. That was a wakeup call too. The CN group is members only on facebook, but my personal fb page is only people I know well. I pay attention to my security settings. That said, most people I know have no idea at all about the experiences of bringing up Nick. So I keep those conversations limited to private ones and share some here and also in private messages with a few folks both on fb and here on CN. I have telephoned some of the folks here when their children were ill. I often tell my friends about my CN community of friends and wonder aloud how it is that I feel so close to you and that we have never met. I dream that maybe some day I will make a road trip to meet everyone and their dear children. Well, enough ranting! xoxo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  3. #13
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    Default Oops! I forgot something!!

    I forgot to add, I also found out, on FB, we're having a school re-union on May 26th!!:) I never would've
    known, if, I wasn't on FB!!:)

    Phyllis

  4. #14
    Distinguished Community Member Jo6's Avatar
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    I just wanted to thank you, dear Rose. You said it so well, not wanting to hurt anybody's feeling.

    I guess I'm just older than dirt, but I'm not fond of change. Maybe that was the big reason I didn't like Face Book. It is mostly for entertainment. Brain Talk is Support and get support. After all the support I've received here I would be a very bad person to bail out on BT now. Maybe in some small way I pray I can maybe make a difference.

    Thank you again Rose, Julia
    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

  5. #15
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    I prefer braintalk itself to facebook simply because I don't have facebook. However if we had a facebook page we could use it to advertise the forum since we REALLY need some new members, especially in the Cerebral Palsy forum. That part of the forum is basically dead which sucks.

  6. #16
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Thank You

    ((((((Thank You!))))))

    Thank you all for responding! I felt a little tenuous about posting this thread, but it seems to me that we need to talk about it, if our goal is to bring back our former members and return BT/CN to a thriving state. I'm glad that you agree.

    Of course, Facebook and Braintalk are entirely different in many ways. But, while BT is a support community, we were also a social network for many years, before FB, Twitter, etc. evolved. We were a social network for people, who had a specific need in common.

    We did lose many members after the crash, but Braintalk is easy to find in seconds with a Google search. The way back here isn't mysterious.

    And many of our former members are now communicating with each other on FB, so if they wanted to return here, they could simply ask for the URL link, and most likely one of them would have it to share.

    Regarding the other neuro forum community, which filled in at the time of the crash, it's true that some former BT members went and stayed there. But, I'm not sure whether that is the case with CN members, as the times when I've visited that community/forum, I've not recognized names of former BT/CN members.

    On CN, we shared everything, and we laughed, as well as cried, we vented, and we prayed together. When one of our children was experiencing a difficult time, or was ill, or hospitalized, or dying, we were here day and night, checking in for updates, sending prayers, support and love for the child and parents. We celebrated birthdays, and we rejoiced at our children's accomplishments. We were pretty tight.

    Things change, time marches on, and new technology presents different forms of communication. I get that. But what I don't get is why our CN parents no longer need the support that they once received here, nor why they don't feel compelled to participate here to help other parents with similar issues. That is why we existed in the first place: to help each other, to learn from each other, so that we could better care for our children.

    I don't know how I would have been able to cope with the final days of my son's life and the months after he passed, if I had not had the loving support of my CN family. They gave me strength through my darkest hours and a soft place to fall.

    Is that kind of support happening on the CN forum on Facebook?

    I understand that FB is the place to meet old friends, connect with family, etc. But Braintalk is the place to connect with old friends, who understand exactly what you are going through, and who can offer advice, experience, knowledge, insight, and guidance, as well as love and support for very specific medical issues. The value of that as a resource, to me, is immeasurable.

    And to me, as a non-FB person, that is the primary difference between BT and FB. FB is a nice place to chat, catch up, to be "superficial," as Tamie said, but BT is where we get down and dirty with our issues. BT is where we find people, who understand our situation, and can offer the kind of support we need to get through it.

    I certainly don't mean to suggest that one needs to make a choice between BT and FB. Since they serve different purposes, there would be no need to make a choice. Obviously, from your responses, it's clear that you don't choose one over the other. But other, former members do.

    And that is what I am hoping to understand.

    Although my son is a grown man, I still long to share his experience with other parents of children with special needs. And I still want to commune with other parents of special needs children, as well as with grieving parents. I still want to offer advice, support and prayers for other parents. That has not changed for me through the years. Of course, I'm (ahem) a tad bit older than most of our CN members, but that's not the reason why I am not on FB. I simply prefer the discussion forum format.

    So, our former members, who are not posting here, I ask again ~ Why do you prefer Facebook?

    Again, I thank all of you for your very informative and thoughtful replies. Please forgive me for not responding individually to you all. Jon has been quite ill since last Tuesday, and we've been running our 24 hour ICU at home for him since then. He's finally turning the corner today.

    I hope more of our current posting members will chime in, and I truly hope to hear from some of our former members.

    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.

  7. #17
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    Hi Rose.

    Well for all neuro stuff, or almost all neuro stuff, I come right here. Having been with Braintalk for over 18 years (I think that is right), braintalk is very much part of the family. I personally am terribly saddened that the neuro team that posted a few years back have seemingly wandered off. Very sad indeed.

    There is a neuro facebook page which is monitored, and I have posted there, but it is not anywhere near as active as we used to be here a few years back.

    Although I am on Facebook, it does have its downside. Cyber bullying in Australia is pretty grim. We have recently had Australian children suicide, because they were being bullied on Facebook :( Facebook could stop this by filtering the text, but I don't think they will do that for many reasons, and IMHO no good reasons at all.

    I vote that all our neuro buddies of the past should be chased down and get back on Braintalk quick smart :)

    Good onya Rose,

    God bless everyone here and seeya,

    Paul, Alison and Grant the champ.
    Grant's story in pictures and music. A must see :)
    http://www.youtube.com/watch?v=fiZGlwj6VCQ
    Seeya there :)

  8. #18
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    Paul, I too have had a grandchild, who I am sad to say was myself who gave her permission to join be bullied. Or threatened to be exact. Her pappy did not like the tone of the child's older brothers threats and so reported him to police. This family had enough troubles it seems without the older brothers bullying and long story short, got wind of it and pcked up and moved pronto. So the other side of the pond is not so different.

    I add that the much youngers girls silly talk did not warrent threats in first place so it all was so sad/bad really. Not a good experience to say the least.

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