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Thread: Other SCI forums

  1. #11
    Senior Member lynnifer's Avatar
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    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

  2. #12
    Senior Member Sarafino's Avatar
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    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

  3. #13
    I have registered 500+ new members over the last year. Most have sci.

  4. #14

    What can you do?

    Quote 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; 08-19-2018 at 10:27 PM.
    "We must overcome difficulties rather than being overcome by difficulties."

  5. #15
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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. #16
    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. #17
    Senior Member lynnifer's Avatar
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    Hopefully the new site upgrade fixes the search function, avatar etc.
    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

  8. #18
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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. #19
    Senior Member Oddity's Avatar
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    Quote Originally Posted by titanium4motion View Post
    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
    Whoooooooosh...the sound of sarcasm flying by...

    funklab recently finished medical school.
    "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

  10. #20
    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.
    "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

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