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    Other SCI forums

    This place used to be much more populated before the site went down briefly and everyone left. I’ve heard there are like 10,000 of us (SCIs) created every year. Surely there is a more active online forum?

    Where else do you guys go?

    #2
    i read http://inspiredsciforum.com
    Don't know if there's a medical moderator like the SCI nurses on CareCure for their site.
    There's a chatroom for registered members.

    Comment


      #3
      Thanks. Just joined up there.
      i agree that Our SCInurses advice here is invaluable.

      Comment


        #4
        After browsing around a little, this inspired forum seems even less active than we are here...

        We’re all “gravely disabled”, for the most part, right? Shouldn’t that mean we do nothing but sit on our asses and watch tv and wish for the sweet release of death? But surely there are enough of us to maintain an active online presence.

        this place used to be much more active than it is now. It was extremely helpful to me when I was first injured in 2007. In addition to learning the practicalities of living la vida SCI, it also felt like a community.

        maybe we’re all just getting old and the newbie scis are all on Snapchat and Instagram and Grindr

        Comment


          #5
          Originally posted by funklab View Post
          After browsing around a little, this inspired forum seems even less active than we are here...

          We’re all “gravely disabled”, for the most part, right? Shouldn’t that mean we do nothing but sit on our asses and watch tv and wish for the sweet release of death? But surely there are enough of us to maintain an active online presence.

          this place used to be much more active than it is now. It was extremely helpful to me when I was first injured in 2007. In addition to learning the practicalities of living la vida SCI, it also felt like a community.

          maybe we’re all just getting old and the newbie scis are all on Snapchat and Instagram and Grindr
          I remember the extra activity around here. It was mostly good but there were some pockets of toxicity taking hold as well. I suspect they had to be dealt with or this site would run the risk of becoming a toxic echo chamber which is one of the worst things for a group that needs to be ability focused and not disability focused. While our realties are beyond belief to normal folks we have to remain positive or risk falling into the abyss.

          Comment


            #6
            huge sci fb groups thats where most sci's are. this is biggest nearly 10k....... tons of quick info shared on ig which i like because mostly just pics of life.
            https://www.facebook.com/groups/SCPSUSA/
            and
            https://www.facebook.com/groups/2014869075503756/

            many many more
            Bike-on.com rep
            John@bike-on.com
            c4/5 inc funtioning c6. 28 yrs post.
            sponsored handcycle racer

            Comment


              #7
              [QUOTE=fuentejps;1863488]huge sci fb groups thats where most sci's are. this is biggest nearly 10k....... tons of quick info shared on ig which i like because mostly just pics of life.
              https://www.facebook.com/groups/SCPSUSA/
              and
              https://www.facebook.com/groups/2014869075503756/


              I'm the Luddite who still doesn't have a Facebook page. My SCI husband does not like to talk about himself. Do those sites accept spouses?

              Comment


                #8
                [QUOTE=2drwhofans;1863496]
                Originally posted by fuentejps View Post
                huge sci fb groups thats where most sci's are. this is biggest nearly 10k....... tons of quick info shared on ig which i like because mostly just pics of life.
                https://www.facebook.com/groups/SCPSUSA/
                and
                https://www.facebook.com/groups/2014869075503756/


                I'm the Luddite who still doesn't have a Facebook page. My SCI husband does not like to talk about himself. Do those sites accept spouses?
                sure lots of wives and gf's bf's
                Bike-on.com rep
                John@bike-on.com
                c4/5 inc funtioning c6. 28 yrs post.
                sponsored handcycle racer

                Comment


                  #9
                  Originally posted by 2drwhofans View Post
                  i read http://inspiredsciforum.com
                  Don't know if there's a medical moderator like the SCI nurses on CareCure for their site.
                  There's a chatroom for registered members.
                  No, there are no health care professionals moderating that site, and some people on this site are not comfortable with the guy who owns that site and his past legal history. They heavily recruited from CC for a while. I am a member, but have found it to be a major source of misinformation and rude behavior toward other members.

                  The Christopher Reeve Foundation also has a blog/discussion forum: https://www.christopherreeve.org/blog

                  Braintalk at one time had a SCI/D forum, which is still there, but rarely if ever used. Their MS forum is still pretty active. http://www.braintalkcommunities.org/

                  New Mobility's discussion forum died a long time ago, before being taken over by the United Spinal Association.

                  Aside from many people not wanting to have a FB account, a major disadvantage of social media sites such as that is their lack of ability to search for other posts on the same topic, and less privacy than on a site such as CC.

                  (KLD)
                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                  Comment


                    #10
                    Originally posted by SCI-Nurse View Post
                    Aside from many people not wanting to have a FB account, a major disadvantage of social media sites such as that is their lack of ability to search for other posts on the same topic, and less privacy than on a site such as CC.

                    (KLD)
                    Yeah I have a FB account, but I don't use it, and I wouldn't post the kind of nitty, gritty (disgusting at times) stuff on there because everyone can see who you are, so regardless of privacy from a big-brother/Cambridge Analytica type scandal I don't want people to be able to google me and see who I am in real life or know who I am in real life and see that I'm a member of such and such facebook group. I prefer to keep the ABs in my life thinking I'm as normal as is feasibly possible for them to believe.

                    Comment


                      #11
                      REDDIT has a spinal cord injury forum and you see the occasional person that's had some time in the chair, but hasn't had proper rehab or training. The problem there is that it's low population and you'll have everyone from a herniated disk to full out paralysis. Lots of family/friends ask questions too. Even a student neuro once and how to break it to someone that they are paralyzed. I mostly observe there .... as much as many would hope I'd just observe here. lol
                      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


                        #12
                        Personally I think all online forums/bulletin boards have suffered a lot since FB became so big.
                        chair user since 2009 from a neurological disorder

                        Comment


                          #13
                          I have registered 500+ new members over the last year. Most have sci.

                          Comment


                            #14
                            What can you do?

                            Originally posted by funklab View Post
                            snip ...

                            We're all "gravely disabled", for the most part, right? Shouldn't that mean we do nothing but sit on our asses and watch tv and wish for the sweet release of death? But surely there are enough of us to maintain an active online presence.

                            snip ...
                            NO!

                            I have a successful career with the United States government employed with the most respected government agency for the past 27 years that I earn a nice figure and living from.

                            I am not part of the stereotypical "gravely disabled" community. I work hard at changing people's attitudes about all people with disabilities by making my presence at my place of employment to make a difference in the work force and volunteering my time to advocacy groups for people with disabilities in my community.

                            I have no TV, cable, dish, or paid streaming networks. I read. I read books.

                            The day I enter the federal reservation and that intrinsic spark of energy is extinguished is the day I put in my retirement papers. Until then I have full passion for the United States government with their vision of the future space exploration and life.

                            I come here to make the world a better place.

                            I come to CareCure to share what I have learned and experienced while living with a spinal cord injury at C6 for 32 years to help others lead and live a better life while living with a spinal cord injury.

                            If you can't share what you learned, it was just all a waste. Think about it.

                            Ti
                            Last edited by titanium4motion; 19 Aug 2018, 10:27 PM.
                            "We must overcome difficulties rather than being overcome by difficulties."

                            Comment


                              #15
                              Originally posted by SCI-Nurse View Post
                              No, there are no health care professionals moderating that site, and some people on this site are not comfortable with the guy who owns that site and his past legal history. They heavily recruited from CC for a while. I am a member, but have found it to be a major source of misinformation and rude behavior toward other members.

                              a major disadvantage of social media sites such as that is their lack of ability to search for other posts on the same topic, and less privacy than on a site such as CC.

                              (KLD)
                              I have been checking the InspiredSCI Forum for about 18 months but find rude behavior to be very rare. It is not very busy, and I agree wholeheartedly that being unable to 'search' vastly reduces the usefulness of FB groups. There are occasional well-informed individuals, and several frequent posters who are frighteningly ignorant.

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