Wake Up BrainTalk!

[Earth Mother 2 Angels]

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

Wake Up Everyone!

I’m clanging the cowbell, and the rooster is crowing!

It’s 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? It’s 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 person’s issues. Just welcome the new member to BT, say something kind, and offer support. It’s 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 ~ What’s there? Even if the posts are not in your “home” 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: “I’m sorry you’re going through this. My thoughts are with you.”?

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 I’ve been negligent in welcoming new members and replying to posts outside of my realm or “home” 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?

I’ve Said It Before, and I’ll Say It Again ~

If we want BT to thrive, then it’s 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 you’ve 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. It’s who we are and what we do.

Except, we’re not really doing it anymore.

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

If we don’t do this, if we don’t 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

[Mal L]

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?

[Mal L]

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

[Mal L]

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?

[Kathi49]

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.

[alex44]

I could not agree more

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

[Kathi49]

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.

[Earth Mother 2 Angels]

((((((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, There’s 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.

There’s 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 don’t respond, would begin responding, we’d 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 can’t 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, “I know someone among our membership can help this person,” 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 aren’t on Facebook, or who are but don’t know about these resources.

BrainTalk is us. It is what we make it. If we don’t nurture it, it won’t grow, and it won’t benefit anyone.

Alas ~ I have been cheerleading like this for BT many times throughout the years, but here we are at the same place. It’s 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. I’m glad that you are pursuing non-traditional options. I pray you find relief.

Love & Light,

Rose

[Kathi49]

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. :)

[tic chick]

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

[alex44]

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

[Earth Mother 2 Angels]

((((((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

[Earth Mother 2 Angels]

((((((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

[Earth Mother 2 Angels]

((((((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

[lor]

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 :)