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Thread: September Chit/Chat

  1. #141
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Lazarus View Post
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    Agate, you are doing what Cherie did. Picking up my marbles and going home. Maybe it is time for this board to die.
    Yes, that's one way of looking at it--picking up my marbles and going home. But there's also the stress involved in dealing with cyberpeople. Some people aren't up to dealing with stress well any more, and I'm one of them. I'm sad about this, sorry to be leaving a board I've been a part of since 2001.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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  3. #142
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by agate View Post
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    Yes, that's one way of looking at it--picking up my marbles and going home. But there's also the stress involved in dealing with cyberpeople. Some people aren't up to dealing with stress well any more, and I'm one of them. I'm sad about this, sorry to be leaving a board I've been a part of since 2001.
    Then your decision is a good one. Best of luck to you.

    Anyone looking for a better MS site could try MS World and/or Active MSers...Dave Bexfield’s site. Both of them have lots of information.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  5. #143
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    This is so sad to watch what is happening to this forum and to all of you wonderful people.

    Cherie, SuzE-Q and agate have announced their departures. How many other missing members are “sitting on their hands,” because of this conflict? There has been a noticeable decline in the number of members posting.

    The foundation of this forum is the friendships you have formed over decades. Please don’t allow this conflict to come between all of you. You love and care about each other. That’s why you’re here.

    That’s also why you share personal information, because your lives are more than your condition. Sometimes, we need to talk about things with people, who understand and care about us. We all need support.

    On BrainTalk, there are two active forums, with the MS forum being the most active. The Child Neurology forum is only active, because I am sharing my life there with my friends, who haven’t left for Facebook or other avenues of communication.

    If people begin falling away from the MS forum, it will wither. Does anyone really want that to happen?

    There may be people with MS, who would like to join this forum and need support, but when they see this kind of conflict, they will back away. Some members may not be posting, because of this kerfuffle.

    Do you all want to see two decades of friendship “die”?

    Without the MS forum, there will be less activity and traffic on BT. What if Dan, David, and Mike decide it isn’t worth the money, effort or aggravation to keep BT running? I would hope that wouldn’t happen. I’m not on Facebook, and I can’t email everyone I’ve met on BT. And I would miss all of you terribly and wonder how you are.

    Well, Lazarus has given you all two choices for “better” sites. And so has agate. So, I guess my words here are likely wasted, if you cannot find a way together to work through this, so that everyone can feel safe, supported, and accepted.

    It just hurts my heart to see this happening. You’ve all been connected for so long, and you all have very full plates in your lives. This is stressful for everyone here.

    Thank you all for your support of me, Jim, Jonathan and our family. You'll never know how much your friendship has helped us. We will remember you always.

    My love and prayers are with you all.

    I will miss you.

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 09-15-2019 at 04:11 PM.
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  7. #144
    Distinguished Community Member agate's Avatar
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    What if Dan, David, and Mike decide it isn’t worth the money, effort or aggravation to keep BT running? I would hope that wouldn’t happen.
    Rose, I'm afraid that may have already happened--and been happening for quite a while. We were more or less assured that there would be a way for us to discuss politics here even though it wouldn't be as conspicuous as a politics thread, for instance. Time has passed, and that hasn't happened.

    This isn't the first time when we were told that this place would be beefed up in one way or another--but nothing happened. I don't think the interest is there. I don't think the funds are there to generate that interest either.

    They let us keep on going possibly because they can't be so cruel as to shut it down completely but it's fairly clear to me that they see no point in putting any effort into this place. The few of us who are left just aren't "worth it" to them.

    I want to scream that we are too WORTH IT! But it's hard to argue when I have no leverage. I don't have any good cards in this game. I'm just someone with MS who would like to be helpful to others in the same boat--or with other neurological issues for that matter though I don't know enough about most of them to be especially useful. I have no funds to give, no status anywhere, no influence that I can use.

    They need to find someone with deep pockets and enough interest in this place to keep it going.

    NeuroTalk, which is an imitation of BrainTalk, isn't doing well either. I don't know its situation at all but there's very little activity there. Maybe message boards are just not "relevant" any more.

    But friendships are, and I'd like to think of some of you as friends. I hope that we can find ways of staying in touch. Howie and others, how about Facebook? And Howie, I have your phone number and you have mine.

    And I don't think SuzE-Q has announced her departure. She suggested that she might leave. There will still be lots of people here, I believe.

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  9. #145
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((agate)))))) ~

    Here is how this is affecting me:

    If there is a mass exit from this forum, I will miss every one of you. You embraced me and my family, supported and loved us through our most difficult travails. And I don't have MS, but you all took me in and loved us.

    For me, it feels like a large group of my friends all decided to pack up and move away to places,I where I will never hear from them again. I think about and pray for all of you every day, and I come here looking for your updates, so I can focus those prayers. Jim knows who all of you are, because I talk about you with him, and we send our love and prayers together.

    I can't keep up with my emails now, and I sure couldn't manage communicating with all of you by email. This is my connection with you, and if you leave, we will be disconnected.

    You will all be meeting up at these other sites and maintaining contact, where I would not belong.

    There is a pattern here for me now, in that a few of my non-BT friends have stopped communicating with me. I guess the passing of both of our sons and Jim's cancer is just too much for some to handle, and they don't want to be dragged down into our problems.

    Of course, I feel selfish, because I don't want you all to leave here. You should be where you want to be, where you can feel safe and supported. I just wish that it was still here on BT.

    Perhaps if enough people expressed to Dan, David and Mike their desire for the private politics forum, something may have been done. But, if they don't get requests, they don't see a demand. They are voluntarily keeping BT afloat, and perhaps that is something to bear in mind, when we ask for special things. We aren't paying fees to be here, and there are no advertisements. I am deeply grateful to them for this gracious, generous service to us.

    I don't really see how the Politics thread pertains to the issues happening here now. The current conflict regards comments made by one member to another about privacy in our communication here. That escalated into conflict among members resulting in hurt feelings. That has happened on every discussion forum to which I've belonged through 20 years, the majority of which were far more serious than this conflict.

    Anyway, I'm clearly out of my lane here, so I will return to my home forum.

    Blessings to all ~

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  11. #146
    Distinguished Community Member agate's Avatar
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    Rose, most people will still be here, I believe.

    This isn't as simple a rift as it might seem. I'll send you a PM. It's not something I can share here on the board.
    Last edited by agate; 09-15-2019 at 06:01 PM.

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  13. #147
    Distinguished Community Member nuthatch's Avatar
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    I am very saddened to read this thread today. This whole thing has been overblown, resulting in many having their feelings hurt. I don't feel that anyone ever had bad intentions and hope you all stay here and continue to support each other. I know I will. Braintalk has been a lifesaver for me for the past 20 years, especially now that my life has become so small because of disability. The sharing and friendships mean a lot to me, all other friends have disappeared.

    I remember when many Braintalk members left and started Plaintalk. As I recall, you had to be "approved" to be a member. That condition felt like a high school clique to me, so I never went there and was disappointed at how many did. I was glad to see some members return to Braintalk later. A support forum should be open to all, in my opinion.

    I hope everyone will stick around, we get some new members and some will even come back!

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  15. #148

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    Sorry this is a neurological forum. Not a political forum there are plenty of those. My goodness doesn't anyone see what happened here? It has become a clique just like everyone said it never would. As I said people come here with a maybe diagnosis of MS, their bodies are falling apart and you have someone with nearly 10,000 posts making fun of DT wavy red hair.

    Yes Im with Suzy-Q I really didn't like having anything I said from God knows how long ago dragged up. Or endless speculation on what I am doing and why Im not informing the self appointed monitors.

    Instead of blaming the loss of membership on everything under the sun....except the core problem. It has become a platform for a few members, no matter the length of time here at Brain Talk to say anything they want on any subject. Justly earning the title of the I HATE DONALD TRUMP club and the powers that be finally put an end to it. Unfortunately a little too late.

    Potential members and scared people with MS questions are afraid to even post. So there is my 2 cents. I remember a time that you couldnt wait to see how the folks at Brain Talk were doing. Now you dread to even look to see who is mad, who is stabbing who in the back. As I obviously don't fit in the club here so I will go back to not participating, to be honest it isn't worth the stress.

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  17. #149
    Distinguished Community Member nuthatch's Avatar
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    This is and always has been an MS support group. Politics were not discussed in any thread other than the thread that was fairly recently created specifically for that, with permission from the moderators. As far as I could tell, there was only one member who was pro Trump that posted regularly on the Politics thread only. That member never posted on any other thread as far as I know, so I have to wonder if he/she was just on the forum to agitate. All members have been publicly advised of the ability to block or ignore any poster, which is what I suspect some did. I never saw anyone berate that person or engage in a political argument with them. I chose not to engage rather than block, but never commented or put that person down for their political views, no matter how much I disagreed with them. The political thread is now closed and we have let it go.

    Whenever a new member posts, they are always welcomed by other members and encouraged to participate. I don't believe for a minute that potential members and scared people with MS questions are afraid to post. There is no back stabbing here.

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  19. #150
    Administrator/SYSOP Mike Weins's Avatar
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    An option to leaving is to ignore those that are causing you stress.

    Yes, BT has been on autopilot for quite some time. Why? Well on my part it's not having the time to get BT back on track by myself. I work 14+ hours a day (16 today and I have to be at work in 5 hours) 5 to 7 days a week and it's a physically and emotionally draining job. I had 2 days off in July and 6 in August Our moderators have been doing a fantastic job keeping things on track and I am so grateful for them.

    I personally have been financing BT for awhile now. I understand the importance of this forum to those that are still here. Therefore I will continue to keep the lights on, especially with what the following sentences convey.

    There is another plan to regenerate (I can hear the eyes rolling now and yea, it's been said before and each time it's fallen apart) BT but it is going to be a slooooooow process. There is a lot of red tape that David and I need to navigate in order to do this the proper way. If we miss something or go out of order it would seriously delay anything happening with BT. If all goes as planned (lol never happens but close is good in this case) BT could see a revival, at the very least remain online for another decade (assuming the fish don't rise up against man )
    Question: Why can't I post links or pictures?
    Question: Why can't I have a signature, avatar, or profile picture?
    Question: What's wrong with my account?

    Answer: You are in the "registered users" user group. This group is very limited in what it can do. This will annoy spammers to no end Just keep posting once you have been registered for 30 days and have made 11 posts your account will be "unlocked".

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people who's posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
    Step 3 - click on the "edit ignore list" link on the left side of the screen
    Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
    Step 5 - click the "ok" button on the right of the screen

    Easy peasy and will lower your blood pressure. One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.


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