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  • Missing members?

    Every1 here has noticed lots of frequent members dropped off kinda last couple years yeah?
    Anybody know member "Chick". Even here avatar went away. She sure contributed alot. Anybody hear from her?
    Makes me wonder alot of younger crowd that hung around here for years between 05-12' either figureD this spot Care/"CURE" had in the works precisely that but gave up on that after years of progress bur no promise, they either moved on or moved out.. Like Lynnifers new thread..It's definitely beguiling, bewildering, just 11 years my legs are shot/broken femurs, bone density 0, muscles vanished..
    Like she said if/when something comes be to far gone to help. Yea another dread thread.
    Last edited by Stormycoon; 02-18-2016, 07:36 PM.
    I am not your rolling wheels
    I am the highway
    I am not your carpet ride
    I am the sky
    I am not your blowing wind
    I am the lightning
    I am not your autumn moon
    I am the night, the night..

  • #2
    I am not your rolling wheels
    I am the highway
    I am not your carpet ride
    I am the sky
    I am not your blowing wind
    I am the lightning
    I am not your autumn moon
    I am the night, the night..

    Comment


    • #3
      There are likely many reasons. On the negative side a few, like 'the hipcrip'' have died. On the positive side there are some who are out in the world burning rubber and are too busy to spend time here now.
      You will find a guide to preserving shoulder function @
      http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

      See my personal webpage @
      http://cccforum55.freehostia.com/

      Comment


      • #4
        I know what your saying. Things have really quieted down. It's sad, this use to be such a busy site. I think the shutdown had something to do with it and then there were also upset people over the way some things were handled. At least personally though it has been a great source of information and not feeling so alone facing a world of obstacles dealing to SCI.
        "Life is about how you
        respond to not only the
        challenges you're dealt but
        the challenges you seek...If
        you have no goals, no
        mountains to climb, your
        soul dies".~Liz Fordred

        Comment


        • #5
          People have gotten on with their lives. Most of the women left over some incidents on CareCure - with good reason. Formed their own group on Facebook.

          Most members are on Facebook now and some have cliqued off into their own groups. Chick's on my facebook but she pops in every once in a while.

          Having info like Dr Silver here helps a lot. No info coming from the Wise thing. Be nice to have other docs talking here since not everyone can travel to a Working to Walk event.

          The most interesting thing here anymore are Grammy's posts.

          Politics piqued my interest for a while but it degrades into insults pretty quickly with people stuck in their ways.
          Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

          T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

          Comment


          • #6
            Originally posted by Stormycoon View Post
            Every1 here has noticed lots of frequent members dropped off kinda last couple years yeah?
            I would not be concerned, people come and go. Since 1997 I have been co-owner, co-manager of a list for my (and related) rare genetic paralysis diseases. We maintain around 200 to 300 members, with an active attrition and replacement rate. But the ones who actively participate in conversation changes month to month, year to year, with a very few piping up who have been around forever.
            Edit: It seems the same here, just on a grander scale.
            Last edited by nonoise; 02-19-2016, 12:36 AM.
            I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

            Comment


            • #7
              Personally I don't miss the drama that uesed to permeate this site. Now it seems that the site is bifurcated between helping with SCI issues and and a place to vent about politics. At least you can pick and choose your issues and get on with what is interesting and important to you without getting bogged down in name calling and personal attacks.

              NL wishes there was a stronger presence in the caregiver area of our Care Cure Community. But, for whatever reason, attempts to revitalize that area have failed.

              On the positive side, there are new members joining and posting, and we need to be welcoming to them and try to rebuild a positive site and place to get the best information about spinal cord injury on the web.

              All the best,
              GJ

              Comment


              • #8
                Glad to see you are with us 55! The trip doesn't get easier, it just go on!

                Comment


                • #9
                  As Lynnifer said, a lot of the active users in that era have moved on to bigger and/or better things. The evolution of the internet has played a HUGE role as well. There was no Facebook, no Reddit, no Skype... Hell there wasn't even gmail or Myspace when we all signed up! This message board was a place for people with SCI to hang with their own. Carecure was a solid part of my life for 5 years. Hanging in flashchat, which became a/v chat with some amazing people was something special.

                  Like all families though, people evolve, get older, move on... drama happens but there's no Thanksgiving or Christmas dinners where we're forced to make amends lol. Aaaaaand it's tiring to hear all of the same things over again. Bladder this, bowel that, life sucks, yada yada yada. Then someone dies, through natural or unnatural causes, and we cry. Rinse, dry, repeat. Not to denigrate anyone's personal struggles but it's easy to become hardened and cynical.

                  I kind of left with that big change a couple of years ago and am just poking in occasionally to post or see whats up... I'm gonna be in a tv series in June that just wrapped up filming so I'll post about that I guess. I'm going to an SCI conference this weekend with a bunch of researchers as the token SCI guy so there's that. And the exoskeleton thing... I post when I have something new to bring to the discussion, otherwise hit me up on Facebook!
                  www.worldonwheels.ca

                  Comment


                  • #10
                    Originally posted by christopher View Post
                    Not to denigrate anyone's personal struggles but it's easy to become hardened and cynical.

                    I kind of left with that big change a couple of years ago and am just poking in occasionally to post or see whats up... I'm gonna be in a tv series in June that just wrapped up filming so I'll post about that I guess. I'm going to an SCI conference this weekend with a bunch of researchers as the token SCI guy so there's that. And the exoskeleton thing... I post when I have something new to bring to the discussion, otherwise hit me up on Facebook!
                    A star in our midst???? lol That's great news. I am cynical about the exoskeleton but only because those simple sores caused by minute rubbing on spots, you cannot feel that you don't even realize exist until you have a life threatening infection.

                    The Grammy Awards are handmade about 10 miles from here so when your time comes, I will drive up there and give it a rub (like a genie in a bottle) before they send it off to the awards for you to collect it!!! lol

                    Keep us updated so we can watch the show.
                    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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                    • #11
                      I will, although it may be Canada only. I lived with a blind lady and a stroke victim for 3 weeks with a film crew. Like Big Brother without the drama!
                      www.worldonwheels.ca

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                      • #12
                        I must have missed the "shutdown", not even sure what that means? But when the website changed a few years ago, navigated it was terrible. Seems it is better/ fixed now.
                        I think the biggest reason is that while there is lots of good info on the net, a person has to really weed through stuff anymore because all the trolls and misinformation. I frequent some other car sites and seems anymore, a person starts a thread and if it goes beyond half a dozen responses, it turn to poop, people make comments based on the last couple replies without reading through the whole thing and there are so many people with the simple intentions of nothing other than pissing people off. they also get flooded with the same topic over and over and over and over.........

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                        • #13
                          Not enough posts by Dr. Wise

                          Plus this site seems to have ramped up in the mean time.

                          http://www.apparelyzed.com/

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                          • #14
                            I just checked in after a year away. DIdn't even realize it had been that long. CC is a useful site, I check back when I have questions. I don't use it for social sites anymore or suggest people come here because there was so much negativity going on for years. Then there was the whole transition to the new design which was a mess.
                            If you can't handle me at my worst, then you sure as hell don't deserve me at my best.


                            Sometimes it is easier to widen doors than it is to open minds.

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                            • #15
                              what is dr wise up to? i haven't been around,i would attend any talk he did in metro ny area.tell "chickKi say hello and would liketo get intouch to sat hello directly. Liz from LI mentioned there was a large albatrose that cause many of the woman to form their own face book page, for once i wasnt involved and found out about it months latter.i would like to get in contact withher, incase she does any more theatre production in NYC, i saw one she did years ago,liz helped me out with doctom recommends a couple years ago. i miss betheny too, alot of the ladies i was friendly with, trying to remember the woman who was going to school in canada, she used to race wc, a couple of upper ny people too, i was fortuante i met a bunch ofthe group at the wash dc walking 2 work , when dana reeve was still alive, i alsomet others at a ny sci weekend that was held at the watrer gardeb area of nyc in the marriot hotel. I would like toget a nyc meeetup froup together tojust say high. please pass onthat metronyc guy wants to reconnect with the old crew,via telephone , as i cant type a conversation.
                              thanksforany help
                              mike
                              cauda equina

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