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    #46
    ((((((HBT)))))) ~

    You didn't upset me. I don't have as many Web Smarts as you do, but this ain't my first rodeo.

    Thank you for your service as a firefighter. I have tremendous respect for your profession, and gratitude for the dangerous work you perform. Bless you.

    ((((((Mike)))))) ~

    Thank you for the refresher course! I do remember some of that happening. But, as I said, I was in super crisis mode then.

    Do you have any idea as to how many forum members we lost in the transition? And is there anything we can learn from losing them to help us improve BT to keep current members and attract new ones?

    Thanks for all you do for us, Mike, Dan, and David!

    Love & Light,

    Rose
    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


      #47
      Mike - If my memory serves me correctly, Did JL (Sorry) replace the server back in the great flood? Seems like that was only a few years ago but with my memory, who knows. IF my memory serves me - money was raised and a new server and software was bought and brought up to speed. As I said before, If this is none of my business, feel free to say so ( I have a tough skin) and as I said before, I understand Office politics all to well. Also, would it help if we ALL started googling Braintalk and went to the CORRECT SITE, would that help? it seems to me that a bunch of wanna-be's are trying to hijack our good name - I won't mention names but the quality of what it did bring up was nowhere near what we have. I have total respect for all the hard work you and Dr. H. put into these forums - they may have literally saved my life a few times. Also, Please think about a dental forum - it is appaling to me that there is virtually no support network for this and even as a vet. (Navy) I cannot get care unless it is service related. Don't even think about Pain Management - I got to where I am now, my first doc was semi-OK with my regiman, she retired. what followed was a nightmare. New Doc. wanted Three trips to a big city on their bus for group therapy, ESI shots, which anyone who has been here a while knows how I feel about THAT, and reductions in my meds, this after a treatment plan that has been effective for FIFTEEN years - I even was able to reduce the amount of meds I had to take. Thankfully, I was approved for SSI about this time and my Medicaid provider is wonderful. She kept me on the same dose - I showed her my VA scrips, and I get much BETTER care - I truly feel bad for our Men and Women coming home. Group therapy to me is having thirty or so people yell at me at once, Another group, chairs were thrown and sometimetimes connected with people - asked the VA for a PSYC. appt. - got a social worker - ok to talk to but no real help will finally see one in APRIL -God forbid if I was wanting to do something bad to myself or others - (I don't, I am an ordained Minister and do not advocate violence in any form

      Comment


        #48
        Rose we lost a huge chunk, I don't have any numbers.

        Alex we will consider a dental forum. As for googling BrainTalk and clicking the correct link, yes that would help. Part of our page rankings come from people searching for "symptom x" or "condition y" or whatever and then clicking on a link to BT. So the more people doing that, the better
        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.

        Comment


          #49
          Support for BT

          Is there a "Support Brain Talk" tab, with a means for us to contribute? If not, could there be? I am not a new user, I re-registered after a long vay-cay. I couldn't imagine BT being gone. There is nothing for people with epilepsy in my community, despite the state of the art hospitals, etc. BT is great.

          -Rene

          Comment


            #50
            ReneF, I'm going to bump your post up. I can't answer your question except to say that if you install iGive on your system, contributions will automatically be made to BT every time you buy something from a merchant or provider on the (long) iGive list. You need to designate BT as your preference but otherwise using iGive is painless.

            Only registered and activated users can see links., Click Here To Register...

            It's great that you want to contribute!

            I hope someone will come along soon to explain about ways to contribute more directly.
            Last edited by agate; 02-13-2014, 11:00 AM.
            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

            Comment


              #51
              Due to various events happening in our (David, Dan, and myself) lives we haven't finished setting up the bank accounts yet. So as of now we have no way of accepting donations. Hopefully soon we can get together and finish up the behind the scenes stuff so we can once again have a donation link/system.

              Agate many thanks for pointing out the iGive button :) Apparently they're having issues with our Facebook page but that will not affect any income earned by users using the iGive button :)
              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.

              Comment


                #52
                Ok quick update, mid terms start next week and are scattered over two weeks ... yay. So plans for the forums are on hold until that fiasco is behind me. BT is still having daily hiccups where the archives crash. Haven't seen the active forums crash yet so I'm not worried enough to try to fix it right away. The list of forums to be cut has been tweaked by David and myself. I will post an updated list ... ummm as soon as I figure out where I saved it too, or after mid terms.
                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.

                Comment


                  #53
                  Well, My thanks too. I must say I have kind of drifted away, and now only lurk occasionally. In the old days Braintalk was like a global family, and it helped me enormously. I can't praise it enough. I'm delighted it is still going strong, and I still want to be part of it. I think its kind of sad to have to shave it down so drastically. Where else will folk who are really suffering for one reason or another, and who have no really good answers, go to?? Braintalk faces the challenges of the ever increasing social websites, which are not necessarily a good thing, as the information available may be skewed, and it seems to me that there is a whole lot of abuse to be had, if you air your troubles on Facebook, or similar websites. Braintalk always felt like a reasonably safe place to go to, for me especially, when I was relatively new to the internet back in the late nineties. I joined in 2002. For me it was heaven sent during a very bad time of spinal episodes, and a lot more besides. It really and truly helped me to preserve my sanity at one point, and I did feel that I had empathy through Braintalk. I really do hope you can keep it going in a way that suits all, and many many thanks for all your hard work.
                  cardiac ablation 1997. prolapsed disc 1992. L5S1 fusion 2003 (failed, bad screw in spinal canal) Lumpectomy 2005, Carpel tunnel bilateral 2005.Prolapses bowel, bladder, uterus, V. Vault rectocele,repaired.2005. Sacral implant failed 2006. further prolapsed bowel. Subsequent ileostomy, removal of colon, rectum,. 2009. removal of bad screw, more metal work L4/5/S1 to stabilise.2010 cervical ADR 2 levels. Hypothyroid. retired 2003, further cervical stenosis problems. on pension& disability

                  Comment


                    #54
                    Mary, like you I won't put my medical issues on social sites and I saw this place as a relatively safe place to post. Talking about our meds and the problems our CP and spinal issue cause isn't something I feel comfortable doing just anywhere. I knew coming here there were others going through the same thing I was dealing with. I also knew I could get their experiences to draw upon when trying to decide the next step in my spinal journey.

                    I wish I had an answer to get more traffic back on the boards but unfortunately I am at a loss on what to do.
                    1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
                    2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life

                    Comment


                      #55
                      Mike,

                      I would have really struggled without this site over the past few years since stumbling across it in 2007. I have mentioned it before but In all that time not once has anybody asked me for anything in return for the support,reassurance and friends I have made on this site. I think it's unfair that we don't all contribute at least something towards keeping this site robust and above all SAFE ,with no virus problems

                      I agree with the post from Mark N,social media is ok but I would not be comfortable.

                      I seriously don't think members would mind contributing financially just a small amount towards the maintenance to this site,it only needs to be small amounts and done in a safe and secure way.

                      And of course it could be optional not mandatory.
                      Colloid cyst removed from 3rd ventricle endoscopically oct 07 shunt inserted late oct 07.

                      Comment


                        #56
                        Hi Bill :)

                        We are still working on getting BT's financials set up properly to handle online donations (John of course didn't do it properly as a 501c) and when it's ready we'll have a paypal link, a mailing address, a re-opened cafepress store, and I think a couple of other things that have suddenly slipped my mind
                        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.

                        Comment


                          #57
                          hey mike!

                          hope finals are going okay!

                          i never checked out the "cafe press" store when it was around, so i don't know what was there.

                          i get around and i am constantly talking to people . in the past year or so, i have written down braintalk's url on a piece of paper for about prolly 15 people.
                          what about having a business card printed up and sold at the cafe press store? i think people are less apt to lose it or throw it out if it's written up professionally. it makes a serious statement of who we are.

                          i'd like to see something like bt's mission statement that is on the "home" page and then the url. something like this:


                          Established in 1993 and affectionately known as "BT", we are an online support community designed to
                          promote education and awareness of various neurological conditions and general health related concerns.
                          Our goals are to foster better communications between patients and all of their medical caregivers, as well
                          as inviting friends and family to voice their support, experiences, and questions concerning people living with
                          any medical condition.
                          We also encourage all medical professionals to join our dialog with their knowledge, experience, and insight.

                          Only registered and activated users can see links., Click Here To Register...
                          Last edited by tic chick; 03-18-2014, 08:55 PM.
                          WE ARE BT!
                          "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

                          Comment


                            #58
                            I too have found Braintalk to be vitally important to me but...

                            I again want to say that the biggest problem is that the site does not reach people like me (MS) A search does NOT bring the site up. That seems simple to me. People doing searches on their own would not know we exist. When what's his name? Ran the site I sent John a large check when he asked for funds/help. Money is part of an answer but recognition/ease of finding us is the biggest part of increasing our footprint.
                            Last edited by Lazarus; 03-19-2014, 03:24 AM.
                            Linda~~~~

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

                            Comment


                              #59
                              if you search Braintalk, you will find a number of listings. WE are the original and I apologize you had trouble finding it - there are posers (imposters) out there - with rude mods who don't let you even MENTION BT or the post never see's the light of day.Now that you have found the real deal (the Original) BT, Please spread the word that we are active and well (sort of but getting better:)). I don't know your circumstances but I hope you will see all the caring people here, ready to help, myself included. I am an Ordained Minister (Gnostic Christian) and I will pray for you to get better. We all have our good and bad days, Pain is a B.... but with PROPER treatment CAN be managed. that unfortunately, is the hard part in todays political climate , as in, all narcotics are bad and addictive without a thought for the quality of life that a person can achieve given the proper medication, Physical therapy, Acupuncture, or as I practice, faith healing, sometimes called Healing Hands, am certified, have my degree in Metaphysics and care deeply for all. a combination of all of the above can help. It is written that spirit has said that he who helps himself will be helped. As far as getting us on the board, use all search engines to find us - the more "hits" we get the better.
                              Welcome to the forum.
                              Blessings
                              Alex44
                              Skypilot

                              Comment


                                #60
                                tic chick awesome idea about the business cards. I'll hopefully remember to look into that over spring break (assuming I can get a tenth of my chores done and my last mid term was today yay! )

                                Lazarus that is a big issue for us. Searching Google for "MS forum" doesn't show us on the first few pages (actually I just checked and found us on page 3) :( This is where our members can help us out a lot. Google ranking is now mostly about content. The more relevant posts in each forum, the higher our rankings will get. Everyone can help improve our ranking by searching for their particular condition and forum (ie ms forum) and scrolling through until you find BT. Then click the link to BT (this tells Google that we should be ranked higher with each "click thru").

                                I know there is a lot of bitterness still about the HUGE amounts of data lost from the last couple of crashes. Mr. Lester claimed to have backups, but never produced them so we can only assume he was lying to us. With BT now being on a hosted plan (meaning a 3rd parties equipment is actually storing and serving BT) we will always have backups that aren't any older then 48 hours. Still people are quite reluctant to conduct and post research here :( It's understandable, a lot of trust was lost due to Mr. Lester's deplorable attitude towards BT in the last 5 or 6 years he was in charge. Hopefully we can turn things around and rebuild most of that trust and thrust BT back into the limelight :)

                                Back links also have some impact on search rankings. That bit is on David and myself (mostly me) to contact these other sites and request a link on their site to ours. Having too many is bad, especially if they have little or nothing to do with the subject matter. Having too few is bad because it appears like we are not worthy.

                                S.E.O. (search engine optimization) is a daunting concept with many things affecting it in both good and bad ways. S.E.O. is always evolving and changing as well. BT is doing good on page load tests (how fast we load) and good internet compliance (ie using proper tags and formats), our biggest hurdle is our lack of activity/content.

                                I have some ideas on how to address that, but they're only baby ideas. I haven't hashed out all of the pertinent information so I can present the ideas to David and Dr. Hoch.
                                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.

                                Comment

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