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Thread: Review of SCI issues/care for newbie?

  1. #1

    Review of SCI issues/care for newbie?

    Hi there,

    I know I shouldn't have to ask this... but does someone have a favorite article/link to a good, basic introduction and review of the health issues for folks with chronic SCI?

    Something that touches on the key skin/bowel/bladder, stretching/exercise needs etc.. and maybe also mentions some of the long term issues? I don't know if some of you have something like this you give caregivers you start to work with, but that would be appropriate.

    Hopefully, not too technical.... The PVA stuff if fabulous, but I wanted to start with something shorter. Thanks.

  2. #2
    Super Moderator Sue Pendleton's Avatar
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    http://www.pva.org/site/c.ajIRK9NJLc...d_Medicine.htm

    Did you check the ones for consumers? They are short, in everyday language and helpful to most who download them. I have the older ones when they could afford to send out the pamphlets.

    Might check out the New Mobility web site in case they have something new.
    Last edited by Sue Pendleton; 08-17-2012 at 01:21 AM. Reason: Added stuff.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  3. #3
    Quote Originally Posted by Sue Pendleton View Post
    http://www.pva.org/site/c.ajIRK9NJLc...d_Medicine.htm

    Did you check the ones for consumers? They are short, in everyday language and helpful to most who download them. I have the older ones when they could afford to send out the pamphlets.

    Might check out the New Mobility web site in case they have something new.

    Yeah, those PVA ones are wonderful, but I don't want to hand her a stack of 5 that are more then 100 pages long. Hoping for one, shorter document, as a jumping off point that touches briefly on all the major issues. We'll "graduate" to the PVA ones.

    Yes, the consumers PVA ones are very user friendly though.

  4. #4
    bump.

  5. #5
    hlh, you might get a better response by posting a reworked version of this in the caregivers forum. I'd use a title that specifically mentions you want a primer for new PCAs/caregivers.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  6. #6
    Quote Originally Posted by thehipcrip View Post
    hlh, you might get a better response by posting a reworked version of this in the caregivers forum. I'd use a title that specifically mentions you want a primer for new PCAs/caregivers.

    Good idea hipcrip.

    I thought the nurses might pipe in. They always have great references.

  7. #7

    Help me find a Primer/reference for new caregivers?

    I was looking for a reference (article, webpage etc..) that reviews chronic spinal cord injury health care issues/need. Basic, but covers the bowel/bladder/skin/pain/spasticity/exercise etc... in an overview.

    It can be a little more sophisticated then what you might give to a new PCA you are hiring, but still for laypeople. Maybe something that you think you yourself might have been able to navigate during your early months in the SCI world.

    I like the PVA series but each topic has its own review. Just too long.

    Funny.... I have a little 15 page booklet that one of the catheter company sent us when we got some catheter samples that isn't terrible... but of course, it spends most of the time talking about bladder.
    Last edited by hlh; 08-18-2012 at 09:27 AM.

  8. #8
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    Contact The Christopher and Dana Reeve Foundation. They have a really good handbook that is loaded with info.

  9. #9
    We put together a patient education ring binder for each of our patients who goes through rehab. Has some basic information that everyone with a SCI needs, plus information that their team members add to further individualize it. We encourage our clients to keep this for use in attendant training for their future.

    Several large SCI rehab program have their patient education materials on-line. You could try using some of these resources:

    http://www.spinalcordcenter.org/consumer/manual.html

    http://www.myvitalconnections.org/MV...sf/patientpage

    http://www.med.umich.edu/pmr/modelsc...rces/guide.htm

    http://sci.washington.edu/info/pamphlets/index.asp

    http://calder.med.miami.edu/pointis/sciman.html?

    http://www.spinalcord.uab.edu/show.a...1&return=21772

    http://www.bu.edu/sciguide/index.html

    http://203.147.140.236/qscis/info_handbook.asp

    http://www.spinalcord.org/resource-c...=kb.book&id=56

    Also, many people like "Yes, You Can!" from the PVA (written by staff at the VA SCI Center in Seattle, WA). You can purchase it in hard copy, or use the on-line version: http://www.nxtbook.com/nxtbooks/pva/...can4/index.php

    http://www.pva.org/site/c.ajIRK9NJLc...sp?ct=10877277

    By the way, the booklets which are the consumer versions of the Consortium for Spinal Cord Medicine's clinical practice guidelines are available on the PVA website, and the Consortium is funded by the PVA, but it is not the PVA who writes those. They are written by experts identified by and selected by the 23 member organizations of the Consortium, based on an evidence-based literature review.

    (KLD)
    Last edited by SCI-Nurse; 08-18-2012 at 01:01 PM.

  10. #10
    Thanks KLD.

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