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Thread: Wake Up BrainTalk!

  1. #11
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    Hi All - Everyone who has posted has made an excellant point - Mainly - THIS IS NOT FACEBOOK. - I have been here a long time and have and always will support BT. Do I ever cruze by other boards and Facebook - Yes - out of curiosity, I seldom if ever, post on FB - have not used it in years - My partner uses it to keep in touch with her sister since our phone service- well the less said the better as I do not want to curse. Not much else I can say that has not already been said. I try to always welcome new and returning members but like all of us, I have my good days and my bad days but BT has always been here for me and as i believe Rose said, I will be here until the lights go out - something I hope never happens. Hope this finds everyone well or as well as they can be.
    Blessings to All
    Alex44

  2. #12
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Kathi49)))))) ~

    Thank you for your thoughts.

    Of course, everyone should be wherever they feel most comfortable. What intrigues me is that members, who once felt very comfortable on BT, no longer visit, or if they do, no longer post. I'm inclined to think that it isn't an issue of comfortableness, rather that folks have just lost interest, either in this format, or with our topics of discussion, or they prefer a snappier form of communication. For example, I rarely see a post as long as mine typically are on Facebook pages (public ones, that is, since I'm not an FB member). That is something BT does offer ~ the opportunity for in depth discussions and conversations, as opposed to a couple of sentences just skimming the surface.

    The reason why I mentioned that we chat about victories, birds, weather (and Haiku) is in response to your comment that it is unhealthy to focus solely on our ailments. I think that our MS forum is a perfect example of balance for a discussion forum, with sharing experiences with meds, help with having food/groceries home delivered, finding the best equipment, as well as social threads about birds, weather, and Haiku. They also support each other, when anyone has a problem or a crisis. And they are hilarious sometimes too. There is no gloom and doom or poor pitiful me going on in our MS forum.

    Although we have a skeleton crew on the Child Neurology forums these days, those of us who participate are there for each other through the tough times and the victories. We also discuss a range of relevant topics, many with political undertones, regarding discrimination and mistreatment of people with disabling conditions. We discuss laws and advocacy strategies. We discuss careproviding, educational, therapeutic, and medication options. We provide each other with resources. We talk about our husbands, our other children, our social life (if we have one). Nothing one dimensional in our CN family. We are life long friends, and we love each other.

    I guess it all boils down to what we want and need individually.

    Still, it saddens me, when a new member posts the first time, in dire need of help, information, the experience of others, and no one replies to that plea. Or if someone does reply, like me, I say, "I'm sorry I can't help you. I hope someone will come along soon, who can."

    Recently, I posted about Plasma Replacement Therapy, asking questions for a family member, who was facing a decision about having that treatment. Not one reply. That's disheartening. I want to know about other people's experiences with PRT, so I can help my loved one with her decision. She has a fissure, and her spine is degenerating.

    I remember a time, when I would have received several responses to a post like that. But those days are gone.

    That's why I put on my cheerleader uniform. Because BT was once a major warehouse of information. People sharing their experiences constitute experts, in my view.

    I can Google studies and research all day, but I want to know what real people have to say about their experience with a med, a treatment, a surgery, etc.

    We all have a wealth of knowledge, and BT is a great place to share the wealth.

    The reason I started this thread was because I want to regenerate that kind of participation, where knowledge and experience are shared to help others. I still want and need that kind of communication and connection. New members post wanting and needing it. I would love to see BT return to that place of caring and sharing, because that is the foundation of our community.

    Time will tell, I suppose.

    Thank you again for offering your views, and I do appreciate them. I do understand about changes in technology and the attraction of the newest forms of communication. I am old, but I try to keep up.

    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.

  3. #13
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    ((((((jeannie)))))) ~

    WE ARE BT!

    You said it, Sweetie!

    All we can do is keep on trying!

    Thank you for sharing and caring all of these years, Jeannie.



    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.

  4. #14
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    ((((((Alex)))))) ~

    Should the lights ever go out, I'll find you in the dark!

    Blessings to you on your challenging journey. Be well and strong!

    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.

  5. #15
    Distinguished Community Member lor's Avatar
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    Hi all, I haven't been here in A LONGGGGGGG time. Some of you might remember me from long ago. I 1st came in about 1985. The room was much different then. I used to love to go to the live "chit chat" room. I have epilepsy & went to that room a lot too. I had a seizure (3 of them) & went in the hospital. In Nov. 2011. I lost much of my memory then when I was able to come back, in middle of Feb., chit chat room was gone and I didn't remember where else I could go. Is David H. Still here? I was just reading where someone said something like 'it is hard to keep up & communicate'. How about a live chit chat room again? This time if it was more like a question and answer thing, where a person could ask something and quickly get an answer, more might come & help others :)
    Lorraine (lor)

  6. #16

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    Hi, I haven't used this in ages I thought I would check back in. I will try to get in more often

  7. #17
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    ((((((lor & Tincatt)))))) ~

    Welcome Back to BrainTalk!

    Lor ~I remember you! Your idea of a live chat room is a great idea. Let's suggest it to Mike Weins, who is our administrator, to see whether it's feasible. Yes, David H. is still here.

    Tincatt ~ Please do stop by more often! Join in the conversations!

    Glad to have both of you back!

    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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