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Thread: What are you told just after SCI now?

  1. #1
    Senior Member Leo's Avatar
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    What are you told just after SCI now?

    I believe I know the answer. Learn how to deal with it and no there's not much hope, probably none. It's being touched on in the ASIA thread and seems like us that have been injured for a while defanatly heard, when the Viking win the Super Bowl it will happen. I'm interested if any of the newer injured are hearing any thing differant? Idea's how we can get these folks to tell people yes some great stuff has happened and the future looks pretty good? It's crap that parents of newly injured have to turn to internet to find out what to do, while their dealing with a tradgedy. I believe we're getting there but maybe there's some thing more we can do?

    "All you have to decide is what to do with the time that is given you."
    Gandolf the Gray

  2. #2
    i´m injured 1 year. 1 month ago i exit the hospital and i heard a lot of people talk about a promise future and about cure, and about a lot of procedures and trials, etc........
    i´m 22 years and at the moment i don´t see any regulated procedure or human trials results,or nothing touchable that can help us.i think that i´m in a perfect conditions if any viable procedure to cure me were available.i don´t know if in the future will be a cure but the present is so confused.
    but dr.young must reply your question.
    excuse my english.

  3. #3
    I don't know what doctors are telling the newly injured but I do know that the policy at many of the SCI resource centers is to avoid any mention of or references to a cure. The prevailing view still maintains that an awareness of what's happening on the cure front will grossly interfere with ones ability to adjust to life with an SCI.

  4. #4
    I see your point, and I agree that nre SCI should be given more hope, told about clinical trials and definitely rehabbed more strenuously (esp. for incompletes). On the other hand, being tgiven too much hope can be a detriment in that new SCI may not be as likely to try to learn o live a complete life with a SCI.
    For example, there was a guy in rehab with me (ASAI A quad) who is so focused on a cure that he has made no attempt to finish school, get out in he community etc. It's as if he's 'pausing' his life until he can live it non-SCI.
    I am of the opinion that I might as well keep on living my life as I would have if I hadn't been injured. That way if or when a cure comes I can take full advantage of it and travel or whatever my SCI has hampered me from doing instead of playing 'catch-up' and finished school, having kids ec.

    "Learn from yesterday, live for today, hope for tomorrow"
    ~ Anon

  5. #5
    Member kaye's Avatar
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    Isaac is 10 month post injury. During his initial hospital stay they didn't know his spinal cord was injured until 11 hours after his car accident then they gave him steroids. All we heard is I don't know we'll have to wait and see. Nobody even explained spinal cord injuries to us which at the time we knew nothing. Two weeks later he was sent to Houston to a supposedly top ranked rehab. I got ahold of his chart and the Doctors comments about my daughter was that she is hopeless and refuses to except Isaac's permanent state of paralysis. I understand the importance of living now and learning what needs to be known to keep Isaac healthy but we will not give up hope. Two weeks ago I went to his physiatrist armed with many printouts on the importance of exercise, a list of some equipment I thought he needed and some information on OEC procedure by Dr. Huang. First after glancing at my material, he looked at me and asked "your going to china?" He never heard of OEC's and didn't ask any questions about it. He just wanted to know how I could afford to take Isaac to China. Before we left he told Isaac "you'll be playing wheelchair basketball when your older." Another attempt to tell me I'm not accepting reality. I wish there was someone to talk to while we were in the intensive care unit or some kind of information packet with resource contacts. We looked up the Christopher Reeves foundation but it really wasn't much help. Nothing like carecure. Sorry for such a long post. This topic touched a nerve, I don't usually post much.

  6. #6
    it´s sad that a young person as me and others more young must be all your live in a wheelchair, and can´t make their own life, no job, no future, no money,..... NOTHING more than their wheelchairs,....... but at the moment its a reality, and nothing make me think something diferent.........at the moment.
    excuse my english.
    what your opinion about this?

  7. #7
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    Most doctors and rehabs even today are grossly behind when it comes to knowledge about a cure. In my case a rehab person pulled out a care book on SCi dated 1982 and announced that this was as current as it gets. My husband was told to set up a hospital bed in one corner of the house because that was where I would spend the rest of my life. Most rehabs are warehouses concerned only about giving "false Hope". BS!!!This all happened to us 3 years ago and it is pitiful that newly injured have to come to someone else injured previously for information. That is one reason that this site is so great, there is hope tempered with reality. Kaye is right in that many of the medical community are more concerned about how we can afford things that may lead to cures than the actual cures, I have had the same experience talking with the SCI "experts". Unfortunately "follow the money" applies here all too often.

  8. #8
    Kaye,
    Maybe it's just in Texas? In Dallas, at supposedly a top ranked rehab, one of the nurses wrote that I, "the wife" was in denial. That really made me mad when I read it.
    But I was confused about what "Rehab" was all about.
    When a person is newly injured, there is reason to hope that something will return rather they tag you complete or incomplete. All SCI rehabs, especially if supposedly the top ranking ones should have an FES bike, a gait trainer and a pool that they actually use. Whatever it takes to attempt to "wake stuff up" before "learned non-use" sets in.

  9. #9
    its incredible but now in 2003/2004 doctors said the same that said 30 or 50 years ago, ``you must live like this all your life. cure? great dream but its a thing that you and me never see´´
    its a reality and make me feel sad.
    i´m only 22 years and if i´ll must be in a wheelchair all my live,............, isn´t life.
    excuse my english.

  10. #10
    Isildur,
    I understand your English just fine!
    For me I'd rather face "False Hope" any day rather than "What If".
    The younger a person is, the more tragic SCI, but I really believe that there are some very promising things going on now as opposed to even 5 years ago.I don't know if it will be "the cure" that gets everyone walking, but I feel that many will be significantly helped. There are a few doctors now admitting this, but change is very difficult for most people.
    Although I've accepted certain things when the time was right, I still haven't given up hope.
    As for these rehab centers here in the US, our medical system is screwed up. Care is dictated many times by the insurance, who of course want to keep costs down, rather than what is best for a patient. Unfortunately Administration was a big problem at the facility we were at. The Administrator was more concerned with spending money remodeling, "eye candy", rather than updated equipment for the facility.
    Hang in there

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