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    Has Facebook killed this?

    What has happened to this forum?:I went to its Facebook page an nothing is there because it's not suited to this sort of discussion. How do we rebuild awareness because I know people didn't just go off and spontaneously heal.

    #2
    ((((((Wm3nSTL)))))) ~

    BACK TO BRAINTALK!

    Unfortunately, many BT members left BT for whatever reason en masse it seemed through the years. My "home forum" is Child Neurology, which has been silent for months now. I did post here, as many of our parents had children with hydrocephalus.

    When former members, like you, return and ask where everybody is, my answer is usually ~ they went the same place you did, when you left. They may have gone to another forum, they may have used social media platforms, they may have stopped using the internet for this kind of discussion, they may have passed, they may have had serious setbacks preventing them from posting.

    It is difficult to maintain these forums without participation. So, when members leave, they take their conversation with them.

    Having stayed with BT for 21 years, it saddens me to see members return only to find the desert of participation in their forum.

    Our dedicated volunteer administrators, Dr. Hoch, David Hosobuchi, Mike Weins, and our Moderators, keep this boat afloat.

    Those of us, who have remained, are here for you, and we will support you.

    Be well and stay safe ~

    Love & Light,

    ❤️❤️❤️❤️

    *Virtual Hugs Are Germ-Free!


    THANKS!
    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

    Comment


      #3
      Welcome, Wm3nSTL!

      Sorry I don't remember you but I'm another one who has been around here for quite a while, since 2001. I too have been saddened by the loss of participants here. There was a time when there were almost too many people here. We were stepping on one another's toes. But nowadays more people would certainly be nice.

      Facebook and the lure of having one's own blog/Webpage as well as Etsy and Twitter and countless other sites where a person can hope to shine individually and attract a lot of followers--people welcome those opportunities although I myself have only a very limited use for them.

      I've had a neurological disorder for over 40 years now and feel I've learned a few things about it, and would like to be available to anyone else who has questions or wants to share experiences. We can learn from one another if we have an appropriate format for a discussion.

      Facebook definitely doesn't provide such a format. I've seen it tried there, and it just doesn't work. It's OK for little snippets of chitchat, or for an exchange of photos or witty remarks.

      People with neurological problems might find that there are real-life support groups they can go to where people with their particular disorder can gather. MS has such groups but many find that they are difficult to get to and not especially helpful. Just getting to and from a meeting can be a project, and it doesn't seem worth one's while if you go there and the leader hasn't shown up. (This happened to me.) With an online forum, you can drop in at your convenience and take part or just sit back and read. How much or how little you want to be involved is entirely up to you.

      I think there's still a place for this BrainTalk board. We may have to advertise ourselves as Oldies But Goodies or some such but we just may stage a comeback. There's a lot to be said for having stood the test of time, and we certainly have done that here. Most people on here right now have been here for many years.

      It would help if this board had a way of coming up on a Google search, I think, but I don't know how to make that happen. I suspect it costs money.

      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

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        #4
        Well, FB has been down all day and is in some legal trouble, so at least we can come here.

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          #5
          facebook is illegal now
          "Here's an unpopular opinion: I'm actually not at all concerned about innocent men losing their jobs over false sexual assault/harassment allegations. Sorry. If some innocent men's reputations have to take a hit in the process of undoing the patriarchy, that is a price I am absolutely willing to pay." Teen Vogue writer Emily Lindin

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            #6
            Welcome, LIZARD66!

            Sure, you can get some attempts at providing information on Facebook. You'll probably find some good information there. A lot depends on the source of that information, and you don't always know much about the source on Facebook, do you?

            I sometimes think of a message board as a periodical I subscribe to. Back in the days when there were hundreds of people on here every day at BT, I found that I had my favorite "columnists"--posters whose posts I always read--and there were some I never read. I found out as time went on that others treated this place the same way. You felt you got to "know" some of the people here even though you'd never met them. You got to know who could be depended on for good, helpful information.

            Those of us who are still here are part of that tradition so far as I can figure out. We've scaled back considerably but we're still making an effort.
            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

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              #7
              I was a longtime member and then was coaxed over to FB. Back in the day, I was just "LIZARD." I'm 55 next month, dx'ed with hydro in early infancy. I was first shunted at a month old and currently have a 41 yo VP shunt. I've been married 31 years and have a 30 yo daughter and 27 yo son. There's been more..err...excitement in my life since I was last here. Looking forward to catching up with old friends and making some new ones!

              Comment


                #8
                ((((((Hugs to All)))))) ~

                The first time Facebook was introduced, I read various articles about it and decided that I would never have an FB account. Zuckerberg is in it for the money, which is why FB mines data.

                The allegations of FB's whistleblower, Frances Haugen, supports my initial instinct that FB would end up being a very problematic thing.

                Worldwide, FB has 2.85 BILLION monthly active users. I imagine that many of them are angry about the shutdown, because they are addicted to FB, not because of the accusations against Zuckerberg's empire.

                Most people don't care that their privacy is nonexistent on FB or other social media platforms. They don't care about algorithms or hate speech or fake news or outright lies. They don't care how rich Zuckerberg is thanks to them. They don't care about young girls, who are body shamed and commit suicide. They don't care about terrorists posting on FB. They just want to be able to go to FB to do what they want to do.

                Others, who do care about those things may not think of them, when using FB. That is why Frances Haugen's whistleblowing is so important.

                For those, who have Netflix, I highly recommend the documentary, "Social Dilemma," which includes interviews with former staff of FB, Instagram, Twitter, etc. The story is told through dramatic scenes as an illustration of the damage social media is doing to young people especially.

                I think FB shutdown today for several reasons, including Frances Haugen's Senate testimony tomorrow, as well as to garner support from those 2.85 billion users. Go a day without FB, and see how outraged users get. It's a ploy. Zuckerberg is gathering his legal staff, his image staff, his financial advisers, in preparation.

                I apologize to all FB users here, as I am not finding fault with you. There is only one person, who is at fault: Mark Zuckerberg.

                But, I don't expect FB to crash forever. He will find a way out of it.

                As for BrainTalk, we're like a Timex watch: We take a licking and keep on ticking. (A very old commercial!) Agate summed it up quite well.

                It is always wonderful to see BT members return. I hope this trend will continue. We will do our best to support you.

                Love & Light,

                ❤️❤️❤️❤️

                Rose

                *Virtual Hugs Are Germ-Free!


                THANKS!




                Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                Comment


                  #9
                  LIZARD66, congratulations on your long-lasting marriage and your two grown children!

                  Facebook/BrainTalk doesn't have to be "either/or." I've been on Facebook for years but hardly ever add anything to my page over there. I do look at other people's posts and photos and find it useful for keeping track of friends and relatives I don't hear from otherwise, particularly now that many people no longer write letters.

                  There are ways of cutting off the flow of posts and advertising you don't want to see, and I use those. You can tailor Facebook to your own preferences in many ways. I agree with Rose, though, that it (and Twitter and other popular social media sites) is doing a lot of harm and yet those in charge of those sites are thriving on the controversy. They want to "drive traffic to their site," and one sure way to do that is to have controversial content. Everyone jumps into the fray. And not everyone cares enough about the content they're looking at to prowl around among the Facebook settings and find ways of tinkering with them.

                  Rose, thank you for mentioning the documentary. I'm definitely going to get hold of it!
                  Last edited by agate; 11-06-2021, 09:48 AM.
                  SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

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