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Thread: too much info made me lose hope

  1. #1
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    too much info made me lose hope

    I been here on this website and learned so much about SCI( even though I am A RN). Now I am getting information that he will not gain much more than he has now after 8 weeks. When I first read DR. Young's articles, got feedback from Dr. Young and the nurses here about his condition I felt realistcally hopeful. I even let my son read them. He has hope becuase he read he MAY get some "substansial return" becuase he had some anal sensation even at times which was "great "according to DR. Young. Now after reading some recent posts by SCI nurse I felt his and our hopes were dealt a fatal blow. Now I am feeling that I lied to him , and that makes me worse than his current situation. How i am going to tell him that he proably not gain much else? I

  2. #2
    Guest
    how long has your son been injured?
    Recovery takes a long time. At 8 weeks I was only able to move one of my left toes. Now I'm almost 11 months post and walk w/ a walker.

  3. #3
    Dear Joe,

    Time for some loving 'straight' talk - You are thinking with your heart, and your grief, my friend. There's nothing wrong with that in the beginning; as parents, there is nothing worse for us than to see a child of ours hurting, and not be able to fix it.

    But - I'm going to ask you to just step back from all that, for a moment, and think with your head and intellect a moment; your aptly trained head, I might add, as an RN. Look at the facts - your son is 8 weeks post; read again, the posts by people like Rick 1 who posted below, and read about the return they got. Read again Wise's articles on recovery, and the time frame in which recovery returns; recovery after years is not unusual, even tho the 'literature' does not support it, and the claims of gains are all empiric.

    And most of all, get your own feelings of despair under control, for if you are feeling it, your son will most surely pick up on it. Be there for him; don't dwell on the 'can'ts' and 'don't haves'; do dwell on the 'look what I can do now that I couldn't a week ago'. Give thanks for the awesome support system your son seems to have, in his school activities and his martial arts studies.

    Reread those articles and posts from a clinical, nurse's perspective; look at them objectively; see the hope in them. And please, dear man, put your despair in a back pocket, because it's not going to do you or your son any good at all.

    None of us can know what our children are feeling in the depths of their beings with this awful injury; not even if we lie in bed and 'pretend' we can't move. But I can tell you that as a parent, I know what YOU are feeling, because I've been there; I've felt that grief and loss for my son, and despair that things would never get better. These dark days will pass; life will go on; you will adapt, your son will adapt; and I wish for all of you that you never, ever give up hope.

    Please check your private topics!

    _____________
    If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa

    [This message was edited by Marmalady on 10-25-04 at 05:56 AM.]

  4. #4
    Joe- I strongly agree with Marmalady. As far as return stopping at 8 weeks, My motor return didn't even start until 3 months after my injury and that was just a toe wiggle. By 5 months I was standing and now at 15 months I walk 50 to 75 feet with two straight canes. As far as I've been told substantial return can happen well into the second year and I have heard of people getting some more at 7 years. It takes time and you will learn patience. Try not to take your son on the same emotional rollercoaster ride that you are on. Let him be as optomistic as he can be. I can't see how it will hurt him. Stay strong. Everything will eventually calm down and normalize. It has no choice.

    jOE

  5. #5
    Senior Member Niese's Avatar
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    okwjoe,
    I agree w/ these guys. SCI is different for everyone. You're son is capable of doing so much. I believe that the mind plays a very important role w/ any kind of disability. Keep positive and look at every accomplishment he makes. That's just one step closer.
    Niese

  6. #6
    Senior Member Cspine's Avatar
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    i began to be able to move my left foot almost 2yrs post. nothing more after that but i figure out new ways to do things daily.

    Still alive

  7. #7
    Senior Member
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    I got the most recovery back between 6 and 8 months post injury. In those couple months, I went from always being in my chair to walking with a walker, then to walking with forearm crutches. I'm 14 months post now, walk with one forearm crutch, and am still getting return every day. It's only little things now, like getting sensation back on one part of my leg, or back, etc., but my strength is also increasing every day.

    Don't get discouraged. It is possible to get return long after the 8 week mark, but everyone is different, keep that in mind. All you can do is stay positive, hope, pray, and encourage your son to work as hard as he can to maximize his return. For the last 14 months I have pushed myself even harder than my physical therapists have and stayed positive that I would walk again, but I also have to keep it in the back of my head that my recovery could stop at any time.

    Good luck, my thoughts and prayers are with you and your son.

    Tina
    C5-C7 Walking Quad
    Aug '03

  8. #8
    Okwjoe,
    To give you some encouragement....First, I don't read certain things that I think will upset me until I'm ready....Our Faith in God has gotten us through each day...that's some good advice as well, I live in this little box that is 24 hours long, and when the Good Lord gets me through each day, I am thankful, and sometimes that''s all I can ask for.
    Dan was injured 8/10/02. TO THIS DAY he is getting return! Don't EVER lose hope! Just this past summer, his wrists came back, literally overnight! The other night, he said he had some unusual tingling in his hands, so we isolated his wrists, and sure enough, middle finger moved! Oh so slightly, he couldn't do it again, but little flickers sometimes turn in to movement. Just to let you know, Dan couldn't move ANYTHING for 3 months, then just a flicker you could hardly feel in his bicep. Now he's 4/5 in biceps. He has also been given some sensation down to his toes, again, just recently.
    False hope is one thing, but plain old fashioned HOPE is something no one can take away from you, you would have to give it up, so don't!!!!!
    My email is in my profile, feel free to ask anything.
    Sincerely,
    Cathy J

  9. #9
    Senior Member mikek's Avatar
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    JP and Tina,
    I went through the same stages as you 35 years ago and progressed to walking unasisted in 3 years.Don't avoid stairs use them for therapy, I walked thousands of flights lol.....also with age comes regression.

    OKjoe your hope is very justified and I remember my mom in 1968 giving me the same encouragement. Bless you.

    Mike

  10. #10
    I'm sorry if anything I said recently shattered your hope. I did not intend it to. The painful fact is that only time will reveal how much your son will get back. I try to encourage my patients to hold on to their hope but to work to maximize their function as they find themselves in the moment. There's still a lot of life worth living for a person with spinal cord injury--lot's of fulfilling relationships, lots of great adventures--even with the limitations.

    Just hang in there.

    Your fellow nurse,
    RAB

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