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Thread: Wake Up BrainTalk!

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Exclamation Wake Up BrainTalk!

    ((((((HUGS)))))) ~

    Wake Up Everyone!

    Iím clanging the cowbell, and the rooster is crowing!

    Itís morning in BrainTalk!

    For those of you, who are still here and joining in the conversation, have you noticed how few of us there are these days? Itís been S-L-O-W around these parts for quite a while. Even MS, our most active forum, as far as I can discern, is slower than usual.

    Why is that? Why are people fading away? Why are people choosing not to participate?

    What can we do to bring folks back to the fold? To get conversations going again? To liven up the old homestead?

    Here are some of my suggestions:

    Pay attention to New Members ~ Check the Home Page for the Top 10 Posts. If a new member has posted, respond, even if you know nothing about that personís issues. Just welcome the new member to BT, say something kind, and offer support. Itís so easy.

    Remember when you first joined BT? How would you have felt then, if no one acknowledged you?

    If you see a post with no replies, go to it, and reply.

    A Welcome Smilie/Emoticon would be nice. (Mike, when you have a chance, could you add one or two for us to use, when welcoming new members, or returning members? Thank you.)

    Click on New Posts ~ Whatís there? Even if the posts are not in your ďhomeĒ forum, respond to those posts. Offer support. Let the poster know that you read his/her post and just be there for that person at that moment.

    How difficult is it to type: ďIím sorry youíre going through this. My thoughts are with you.Ē?

    How do you feel, when people reply to your posts? Keep that in mind, because we all feel that same way. No one wants to be ignored or discarded. And when someone acknowledges us, we feel better.

    We are all falling short of that kind of support here at BT. I include myself, as Iíve been negligent in welcoming new members and replying to posts outside of my realm or ďhomeĒ forum.

    But my personal goal is to remedy that and become more responsive to every BT member.

    Initiate More Discussions in Your Home Forum ~ You have a lot to say! You have issues you confront in your daily life, in common with others in your situation. You have experience, knowledge, and information to share! Do it! Just jump in there and start a thread. Why hold back? What are you waiting for?

    Iíve Said It Before, and Iíll Say It Again ~

    If we want BT to thrive, then itís up to us to make it thrive. If we sit back and do nothing, it will die on the vine. It will become a ghost town.

    The BrainTalk Legacy ~

    Before there was Facebook, Twitter, Instagram, blogs, and other social media, and even other on line discussion forums, there was BrainTalk. If the internet had a Register of Historic Places, BrainTalk would be at the top of the list.

    Think about when you first came here, desperate for information, support from people, who truly understood your condition and your despair. Think about the life-long friends youíve made through BrainTalk. Think about the millions of people in the world, who feel just like we did then, or do now.

    This is why BrainTalk came to exist, and why it still exists today. Itís who we are and what we do.

    Except, weíre not really doing it anymore.

    Letís make an investment of ourselves in BrainTalk, with gratitude for all weíve received here. Letís pay forward the support weíve received by giving support to others. Letís recognize how unique we are, and honor the legacy of our beginnings and years of incredible world wide participation. Letís rebuild BrainTalk, brick by brick, post by post, and make BrainTalk the place, where others are excited to join.

    If we donít do this, if we donít invest ourselves in our community, then we will stand by and watch it wither.

    I believe that we are stronger than that. Let's dig in, and prove it.

    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.

  2. #2
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    One problem is that it is hard to post a reply. I found that I had to use a "forgotten password" option. Did anyone else have that type of problem?

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    Lucky me - I am still able to post a reply.

  4. #4
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    I have done some surfing in the past half hour and found that I was still able to return to this message area. Does anyone have any thoughts or comments that they want to mention?

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    Hi Rose, first I want to say that your post was very well thought out and written. Secondly, what some people don't understand is that technology moves at the speed of light. I used to work in IT and it was a constant effort to stay abreast of every system change. As newer technologies come on board i.e., Facebook, Instagram, etc., people tend to flock to them. Are they passing fads? Who knows? But there will always be something of more interest depending on the individual and what these newer technologies can support. Think about this as well. If someone has a spinal condition, as I do, do you think they are going to google the words Braintalk? No, they will be like me and just happen to stumble across it which is what happened when I joined in 2006 I think it was.

    Having said all of that, the reason I don't post much anymore is for various reasons. The main one being is that all I was doing was repeating everything I had said in prior years. So, there was nothing new for me to report. That doesn't mean I couldn't provide support and I did so. What I also found is that the more I talked of ailments, the more my own pain was in the forefront. While there is nothing wrong with venting or speaking of our ailments, I was also told by various docs to focus on something else. And they were right. So I picked up my Genealogy hobby. Plain and simple it is not healthy to talk about pain every single day. I also found that a lot of misinformation was put out there. And when a doctor was literally ran off the boards I was saddened as I believed him to be of great help. I was quite literally turned off by the goings on. And this is about the time Facebook came into being. Many people don't like it and swear they will never use it. And that's fine. I happen to like it because for me it is a one stop shopping place per se. I can stay in contact with family and friends and even others that have chronic pain and spinal disorders. As an example, can I shoot a picture on here and have it instantly appear? No, and that is because the technology of Braintalk has not caught up as far as I know. I can do so on Facebook and other social media. Oh and for the record, there are closed groups on Facebook. I even noticed David tried to set up a Braintalk group on Facebook. But no one would sign up. I suppose people believe it is more private here. But it really isn't. So all in all it is whatever you are used to or whatever media you choose.

    Last but not least, I am and always will be grateful to the people who helped me work through my own issues as I didn't have a clue as to what was going on at the time. And they were of great help! I wish you all the best and I hope Braintalk will thrive again for those that prefer to use it.
    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

  6. #6
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    Question I could not agree more

    Quote Originally Posted by Kathi49 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi Rose, first I want to say that your post was very well thought out and written. Secondly, what some people don't understand is that technology moves at the speed of light. I used to work in IT and it was a constant effort to stay abreast of every system change. As newer technologies come on board i.e., Facebook, Instagram, etc., people tend to flock to them. Are they passing fads? Who knows? But there will always be something of more interest depending on the individual and what these newer technologies can support. Think about this as well. If someone has a spinal condition, as I do, do you think they are going to google the words Braintalk? No, they will be like me and just happen to stumble across it which is what happened when I joined in 2006 I think it was.

    Having said all of that, the reason I don't post much anymore is for various reasons. The main one being is that all I was doing was repeating everything I had said in prior years. So, there was nothing new for me to report. That doesn't mean I couldn't provide support and I did so. What I also found is that the more I talked of ailments, the more my own pain was in the forefront. While there is nothing wrong with venting or speaking of our ailments, I was also told by various docs to focus on something else. And they were right. So I picked up my Genealogy hobby. Plain and simple it is not healthy to talk about pain every single day. I also found that a lot of misinformation was put out there. And when a doctor was literally ran off the boards I was saddened as I believed him to be of great help. I was quite literally turned off by the goings on. And this is about the time Facebook came into being. Many people don't like it and swear they will never use it. And that's fine. I happen to like it because for me it is a one stop shopping place per se. I can stay in contact with family and friends and even others that have chronic pain and spinal disorders. As an example, can I shoot a picture on here and have it instantly appear? No, and that is because the technology of Braintalk has not caught up as far as I know. I can do so on Facebook and other social media. Oh and for the record, there are closed groups on Facebook. I even noticed David tried to set up a Braintalk group on Facebook. But no one would sign up. I suppose people believe it is more private here. But it really isn't. So all in all it is whatever you are used to or whatever media you choose.

    Last but not least, I am and always will be grateful to the people who helped me work through my own issues as I didn't have a clue as to what was going on at the time. And they were of great help! I wish you all the best and I hope Braintalk will thrive again for those that prefer to use it.
    Kathy 49 and the rest of the good people
    People do need to wake up - I check other boards and see people that USED to post here at BT. This saddens me, I have been here since 2007 (according to my profile) and I wonder WHY? I too used to work in IT (30+ years) before I was forced/ had to retire, big companies don't like there IT people on anything - yes, they find out and you are out of there, BT used to be a vibrant board, it can be again. people need to heed the roll call I put out, I hope it is still up, but the bottom line is you get out what you put in. I have been going through it with PM, It really sucks how the media says this and that about people abusing painkillers, it spans all age groups, and people get multiple scripts for drugs. that is why a data base showing who gets what is so important. that and the doctor shoppers, who get multiple scripts. this is a BIG problem for those of us who are truly in chronic pain. I am in the process of trying alternatives, such as Acupuncture, massage therapy,etc. I do meditation and pray a lot. these things help, but I have hit a wall that i cannot get past, although I never say never.
    Thanks for the listen - this might have been a vent but I am tired of seeing members from here on other boards - the latest is NOT the greatest.
    Blessings
    Alex44
    Skypilot

  7. #7
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    Alex, thank you for your input. But I had a completely different experience while working. If it had not been for my Director, my supervisor and my co-workers, I never would have made it through the remaining years. They were fantastic and did everything they could do to help me. It was "I" who felt I was letting them down. It is pretty difficult to be in severe pain while at the same time taking various meds and try to program. But they all helped me through it until I had my time in. Actually, they also offered part time but I didn't want to screw up my compensation package prior to retirement. All in all they were my Angels and I will forever be grateful for their concern, consideration and help. I haven't had any issues with PM or meds thus far but I do understand what others go through. And well, I keep my dose(s) low and work through it as you have listed out. I feel badly about the "wall" you have it. But PM was my life saver. So, we all have had different experiences. And what I meant by latest and greatest is that, for instance, Spine Universe and Spine Health have their own pages. The various groups provide links as research continues. I find it to be very beneficial to read up on the latest that is being done. Anyway, I don't want to get into a huge debate over all of this. All I am really saying is that people choose the media they are most comfortable with. I just don't have anything new to add at this point other than another cervical disc is slowly going. So, it is status quo. And I also think a lot of people leave simply because they are going on with their lives and have a lot of other interests. Hang in there Alex and I hope you can get over that wall.
    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

  8. #8
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Mal L)))))) ~ I'm glad that you were able to find your way to post. I tend to not log out, so whenever I visit BT, I'm logged on, and I can post without any problems. The "Forgotten Password" is an option, if you've forgotten your password, to reset the password, allowing you to log on. We have to be logged on (or in) to be able to post.

    ((((((Kathi49)))))) ~ Thank you for your thoughts.

    I know that Facebook is the preferred location for most BT members, who have vacated the premises here. Evidently, it is drawing more members away, because our participation (from my observation only) is significantly less as time goes by.

    Even with Facebook, Thereís Still Something Here at BT

    And, I am not on Facebook, nor will I ever be, but I do understand its appeal. What I don't quite understand is the "either/or" of Facebook and BT. It's either all FB and no BT, or all BT and no FB? Why? FB and BT offer different things. Why can't folks participate in both places?

    In the early to mid 2000s, I belonged to Child Neurology here at BT, and to a G Tube forum, an Ostomy forum, and a Parental Grief forum. I branched out to get what I needed from various sources. So, I see this as possible in the competition between Facebook and BrainTalk. Why should one cancel out the other?

    Photos on BT

    I don't think that you can shoot a picture and have it appear instantly here at BT, but I do know that you can post photographs on BT, which I and many others have done a few times. It's a matter of clicking on the icon for "Insert Image" and following a couple of steps.

    Thereís More to BT Than Pain and Complain

    As for only sharing our pain and repeating our stories, I think we go much deeper than that. We also share our victories, what works for us, what doesn't, new treatments, and sometimes we just talk about the weather and birds. Sometimes using Haiku. (See the MS forum.)

    Privacy Is A Myth On the Internet

    Regarding privacy ~ We've always known that BT is accessible to the public from Day One. It's up to our members to determine how much they want to share. Even with all of the privacy settings of Facebook, FB members' information is in the hands of the owner to do with as he wishes. That's how he became a billionaire.

    For that reason, I'm less concerned about an invasion of my privacy on BT than I would be, if I were on Facebook.

    The Past is Gone ~ The Future is Ahead

    What happened in the past is in the past, and it has no relevance to BT in its present state. John Lester is no longer involved. MGH is no longer involved. We have a completely different team of owners, managers, facilitators, and moderators. Back in the day, things went from great to bad, but it's over now, and this is a new ballgame. Our goal is to rebuild our community.

    If we lose our participation, while everyone chooses Facebook or elsewhere, then BT will eventually become non-existent. What incentive is there for Dan, David, and Mike to invest their time and money in keeping BT viable, if the traffic here slows to a standstill? They work to make BT happen for us, to keep it going, so that we still have this historic residence to return to whenever we desire. But we can't expect them to continue their efforts, if we abandon BT for social media or other internet sites.

    To me, the question is, "how much do we care about BrainTalk to ensure its continuation on the cyber landscape?" If we think of BT as an Historic Building, then we can visualize renovating it for modern use. But, if we walk away from BT and fail to support it and our members, then eventually, it may crumble.

    You replied to this post, which means you visited here and were compelled to respond. If all of our members, who lurk here, but donít respond, would begin responding, weíd be up and running again! If we all made an effort to respond to new members, more folks would be inclined to join and return after their first post. If we all made an effort to reply to a thread with 0 posts, members would feel more included and supported.

    Quite often, I respond to threads by new members, who have a problem completely out of my realm of experience. I generally explain that I canít help them and that I hope someone will soon respond, who can help them. I remember, when BT was at its height, there was always someone with experience or information to help another member. So, I keep thinking, ďI know someone among our membership can help this person,Ē but no one does typically now.

    For example, you could post on the Spinal forum about information you gleaned from Spine Universe and Spine Health. That might help folks, who arenít on Facebook, or who are but donít know about these resources.

    BrainTalk is us. It is what we make it. If we donít nurture it, it wonít grow, and it wonít benefit anyone.

    Alas ~ I have been cheerleading like this for BT many times throughout the years, but here we are at the same place. Itís Facebook.

    So, I shall wash, fold and put away my cheerleading uniform. BT is not Facebook. It never will be Facebook. I get it.

    I intend to remain here at BT until the lights go out. And I'll keep hoping for a resurgence of appreciation for BT and its history.

    ((((((Alex)))))) ~ Sending healing prayers for you daily and surrounding you and your partner with positive energy. Iím glad that you are pursuing non-traditional options. I pray you find relief.

    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.

  9. #9
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    Rose, thank you for a well thought out post. Okay, there is no either or. It is as I said, whatever is most comfortable for an individual will be the place they go to. Victories, what works and what doesn't, bird and weather are also things that can be discussed elsewhere. Privacy is an issue anywhere on the Internet. Having said that, I do read and I do visit a lot of other forums as well. But again, I don't really have anything add in regards to my own health. And I am not qualified to have a discourse on things of which I have no experience. I do hope for the sake of BT that members return. Thank you again. :)
    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 tic chick's Avatar
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    hey everyone !

    i think BT and facebook are 2 entirely different websites! to me, facebook is a place that i share many of my interests (i share some of those here, also), keep up with old friends and post my take on current events. BT is a neurological website where i discuss my own neurological probs or the probs of loved ones that i am dealing with. posting on BT requires thought, time, a different approach...and that's not bad, it's just the way it is. i would never post my physical probs or my mom's battle with dementia on facebook and i would never post my political views on BT (mostly because they are against the TOS). i thnk you go to different websites to get your needs met, whatever they are. also when you post on facebook, you're posting under your own name, which can be googled by anyone. at BT, you can post under a pseudonym, which can also be looked up on google, but is a little bit more protective of your identity.

    yes, we can all welcome new people, even if we don't have experience with their specific medical prob. it's just a matter of saying hello!, we're glad you found us and someone who might be able to help you with your prob will show up, as rose said.

    some people post here at BT for a short time, usually when they have acute medical probs or their children are growing up with a neuro disorder and then they leave because their children are grown and are relatively okay and their own medical probs are gone or they've learned how to deal with them. some people are here for a long time for their chronic health probs. there are also many people here who are dedicated to BT and will post wherever they see a need or just want to contribute.

    i won't rehash past probs except to say we did take a hard hit in 2006. we're recovering from that and i know there are many excellent suggestions that will be implemented over time to make these forums stronger. change is always happening. perhaps one day people will look for the nurturing of a place like BT instead of the informality of a facebook. yes, there are forums for specific neuro and other probs. some will stand on their own and some won't be able to manage the enormous amount of work it takes to run a forum. we will still be here.

    our ongoing presence as a website, the dedication of david, mike and dr. hoch and the people here (WE ARE BT!) are the strongest things we have going for us!

    i will be forever thankful to BT for being here back in 1999 when i first subscribed to the internet. i consider this my home and i'm not going anywhere .

    thank you for sharing and caring,
    jeannie
    Last edited by tic chick; 05-25-2014 at 09:41 AM.
    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

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