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  • "Centers Forum" listing places that deliver surgical, rehabilitative, and other therapies for spinal cord injury

    0 0%
  • "Therapies Forum" listing the therapies that people with spinal cord injury are receiving

    1 10.00%
  • Both

    9 90.00%
  • 0 0%
  • 0 0%
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Thread: A "Centers Forum" and a "Therapies Forum"

  1. #1

    A "Centers Forum" and a "Therapies Forum"

    One other question, I have been thinking of setting up two other forums: "Centers forum" and the "Therapies forum". The first would discuss places that deliver more accepted therapies that are not in clinical trials... i.e. Hank Bohlman's chronic decompression of the spinal cord, Barth Green's untethering and treatment of syringomyelic cysts, titanium cage reconstruction of the spinal cord, supported ambulation centers, exercise programs, Sister Kinney's rehabilitation methods, etc. This could also include 150 or so rehabilitation centers around this country that take care of most of the spinal cord injured in the nation. I can also include places in Canada and overseas.

    The second would be the various medications and surgical procedures that are commonly used to treat spinal cord injury. I can post a description of the treatment and people can indicate their experience or ask questions about the therapies.

    Would there be interest in such forums? If you have other ideas, please post them here. Thanks.

  2. #2

    Additional ideas

    I think the word "Therapies" is wrong...it could easily be confused with exercise and advice from PTs and OTs. How about "Treatments/Medical Care"?

    I would love to see a couple of the ideas we discussed in the old Spinewire days:

    Therapy forum: would need OT/PT moderators. Exercise, fitness, etc.

    Feelings Forum: psychosocial issues, including coping and adjustment, depression, dealing with anger, sexuality, interactions with family/friends, etc. Moderator could be an experienced social worker or psychologist.

    Other ideas:
    Fun Forum: sports, hobbies, travel, etc.

    I think we should still keep the 3 themes of Cure, Care and Life overall though. Perhaps forum "groups"? (KLD)

  3. #3
    KLD, thanks. You are right. Perhaps "Treatment Forum" would be a better name. I was thinking of having this forum cover all the therapies, medical and surgical, occupational and physical, mainstream and alternative. It must be different from the "Care Forum" in that it tries to collect the information about drugs, surgery, and other treatments that people with spinal cord injury undergo.

    I am thinking of setting up the "Treatment Forum" as a moderated forum, along the lines of the "Trials Forum" where the treatment topics are introduced by a moderator, describing the therapy, and then people post questions, experienced, and views under each of the treatments. This way, people would be able to go directly to the Treatment Forum and see all the information on any particular therapy that the might be getting.

    We currently have about 250 registered members of the forum. We are getting 250-300 registered visitors (some come more than once a day) and over about 400 non-registered visitors per day, spending an average of 7-8 minutes per visit looking at 10-12 page views and posting 50-60 messages per day. Since June 26, we have accumulated nearly 1500 postings. The traffic has been increasing at about 5% per day without advertising.

    The Care, Cure, Life forums are intended to be free-wheeling discussions with broad topics so that each of the discussions get maximum exposure to as many users as possible. It would be important to maintain these as high-traffic forums. I have been trying to introduce moderated forums as a means for new users to learn about specific frequently asked questions so that the information on these questions are gathered together in one convenient place.

    So, the trials forum came about because I have received probably hundreds of requests for a list of all the clinical trials going on in the field. I have also received many requests for where to go for therapies and care, hence the concept of a forum that would describe the places that people can go, to gather the experience of people who have been there. Finally, there are hundreds of requests for information about specific drugs, surgical procedures, and rehabilitation practices and hence the concept of a forum that would describe the therapies.

    Wise.

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