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  1. #1

    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. #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.

  3. #3
    Quote 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.

  4. #4
    Quote 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.

  5. #5
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    Quote 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.

  6. #6
    Quote Originally Posted by Tetracyclone View Post
    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.

    Trying to do a search on Care Cure Community is not easy either. Actually, I find it easier and more productive to do a Google or a Duck Duck search for the terminology I want and then add Care Cure Community. The Care Cure Community v/bulletin search capability is wholefull, said another way, the Care Cure Community search function on v bulletin sucks.

  7. #7
    Senior Member Oddity's Avatar
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    Quote Originally Posted by gjnl View Post
    Trying to do a search on Care Cure Community is not easy either. Actually, I find it easier and more productive to do a Google or a Duck Duck search for the terminology I want and then add Care Cure Community. The Care Cure Community v/bulletin search capability is wholefull, said another way, the Care Cure Community search function on v bulletin sucks.
    FYI (For Your Information), if you type site:sci.rutgers.edu in the search box, in addition to your search criteria, google and DuckDuckGo will do a site specific search, only returning results from the site you want.
    "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

    "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

    "Even what those with the greatest reputation for knowing it all claim to understand and defend are but opinions..." -Heraclitus, Fragments

  8. #8
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    Quote Originally Posted by Tetracyclone View Post
    ... and I agree wholeheartedly that being unable to 'search' vastly reduces the usefulness of FB groups...
    FB does have a search function, and it works well enough. You can “search this group” in the box on the left hand column on the CareCure FB page (as an example). I will admit that I only discovered the function recently, so I don’t know how long it has existed for....
    Gordon, father of son who became t6 paraplegic at the age of 4 in 2007 as a result of surgery to remove a spinal tumour.

  9. #9
    Thanks. Just joined up there.
    i agree that Our SCInurses advice here is invaluable.

  10. #10
    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

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