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Thread: Hope lost?

  1. #141
    It sounds like he is doing really well.
    What are his plans as to where he will live? How is he doing emotionally?
    I can't really answer the medical parts of your posts.
    My husband is C3 complete (2 yrs) and can not move or feel anything below the nipple line.

  2. #142
    Quote Originally Posted by LindaT View Post
    It sounds like he is doing really well.
    What are his plans as to where he will live? How is he doing emotionally?
    I can't really answer the medical parts of your posts.
    My husband is C3 complete (2 yrs) and can not move or feel anything below the nipple line.
    Hi Linda,
    Hey emotionally he is great as far as we all can tell. Very positive and determined! As far as where he will live, he is presently at Cheshire and really likes it there. I know it's not the same as being at your own home but it is the best place for him now. He is really working hard at rehab and so far it appears it is paying off. Spoke to my sister a little while ago and she said it shocked her at how he was able to move his leg (not so much his foot). We don't know what the future will bring but we continue to support and pray for him and just be there. Good to hear from you.

  3. #143
    I'm glad he likes where he is at. That is huge.
    Thanks for the update and tell him hello.

  4. #144
    Glad to hear of his progress as well, it sounds like he has come a long way. I'm a C2/3 level injury and have some sensation in my upper chest, but that's it. It sounds like he may be incomplete, but testing would need to be done to determine that.
    C2/3 quad since February 20, 1985.

  5. #145
    Quote Originally Posted by trainman View Post
    Glad to hear of his progress as well, it sounds like he has come a long way. I'm a C2/3 level injury and have some sensation in my upper chest, but that's it. It sounds like he may be incomplete, but testing would need to be done to determine that.
    Hoping that his injury is incomplete as opposed to the Docs original diagnosis of complete. We don't really know when or where this road will end for him as far as recovery is concerned but just watching the progerss he is making is truly inspiring. His determination is nothing short of amazing to me and I am truly thankful he finds the strength every day to keep at it. You just never know! January of this year it seemed as if all hope was lost. I remember what it was like to truly feel helpless and just when you were hoping for things to get better... they got worse...and worse..and worse. I think what I have learned from all of this is that no matter how bad it seems at the time, to never stop hoping. Keep praying and hoping, because you never know. Things just might change for the better. Okay, enough of my going on. Thanks guys for all the support. Talk to you all soon.

  6. #146
    Quote Originally Posted by harberrat View Post
    If he can move his feet, what does that mean in terms of his injury?? What does it mean in regards to his recovery?? Has anyone had a similar experience??
    I don't know if this answer helps you or not. But in the event that it might, I will tell you my own experience. I was told my injury was C2 complete. For the first two years I had absolutely no sensation or movement below my jaw. Progress has been very slow, but nearly 5 years later I am moving fingers on one hand and have steadily recovered some areas of sensation on my back, chest, and one arm. This week I had some flickers of response to touch on one of my feet. The finger movement isn't functional (yet?) and the sensation I do have is quite impaired. But it's all things I never expected to happen. I had pretty much given up hope of any recovery, but now am looking into my options for a more aggressive physical therapy program. Up until now, a long string of health issues has made consistent therapy work difficult. Whether that will make a difference or not to further recovery, I don't know.

    Every injury is different so I don't really find stories of others making progress very helpful in terms of keeping me motivated or hopeful.. But if I am moving my fingers, seemingly out of the blue after 5 years, it leads me to believe that doctors can be very wrong as to outcomes.

    Is there any possibility of getting him into a pool at some point? I fully believe aqua therapy has made a big difference in my own recovery.

  7. #147
    I remember your first post in January and how my heart sunk knowing someone else was going through what we did.
    I was new to CC too and had not met any other people except at rehab with SCI at as high of level as my husband. How I wish I had known about CC early on.
    He sounds determined to make the best of his situation. How is his breathing?

  8. #148
    Quote Originally Posted by LindaT View Post
    I remember your first post in January and how my heart sunk knowing someone else was going through what we did.
    I was new to CC too and had not met any other people except at rehab with SCI at as high of level as my husband. How I wish I had known about CC early on.
    He sounds determined to make the best of his situation. How is his breathing?
    Initially, when his injury occurred he was breathing fine. Then the swelling caught up and slowly he lost the ability to breate on his own. Gradually at Kessler rehab he was weened off of the breathing machine and everything else and now can breathe on his own. His voice is very strong and has no issues breathing now. He works very hard every day and still says he will walk out of there one day. I have had discussions with other family members and we decided a while back that we would never discourage him. Doctors have all told us differently, but as far as I am concerned.......If he says he can do it.....Well then I believe him. He is very determined and I see no reason he won't get up and walk out of there one day. We all have dreams, mine was to become a writer one day and you know what? He will probably reach his dream before I reach mine! ha! ha! Atleast I hope so.

  9. #149
    Quote Originally Posted by orangejello View Post
    I don't know if this answer helps you or not. But in the event that it might, I will tell you my own experience. I was told my injury was C2 complete. For the first two years I had absolutely no sensation or movement below my jaw. Progress has been very slow, but nearly 5 years later I am moving fingers on one hand and have steadily recovered some areas of sensation on my back, chest, and one arm. This week I had some flickers of response to touch on one of my feet. The finger movement isn't functional (yet?) and the sensation I do have is quite impaired. But it's all things I never expected to happen. I had pretty much given up hope of any recovery, but now am looking into my options for a more aggressive physical therapy program. Up until now, a long string of health issues has made consistent therapy work difficult. Whether that will make a difference or not to further recovery, I don't know.

    Every injury is different so I don't really find stories of others making progress very helpful in terms of keeping me motivated or hopeful.. But if I am moving my fingers, seemingly out of the blue after 5 years, it leads me to believe that doctors can be very wrong as to outcomes.

    Is there any possibility of getting him into a pool at some point? I fully believe aqua therapy has made a big difference in my own recovery.
    Not really sure about the pool but I will ask. Thanks for the encouragment. I think we can all accomplish what we want to some degree. Just a matter of time and effort!

  10. #150
    I'm not sure what the technical definition of being incomplete is, but when it was first explained to me, it was: having some ability to move or feel below where you should, given your level of injury.

    Regardless of the technical definition, clearly it's a good sign that your brother is having some return / recovery (and may it continue!).

    I was diagnosed as a C1-2 complete a little over 13 years ago, and though my sensation is the same (numb from below my jaw line down and from the crown of my head back / down) I have developed the ability to move my shoulders a little. I learned to breathe some by using my neck muscles to pull my chest & shoulders up enough to take in air when I'm disconnected from my vent (it looks like a mini-situp as I try to move my chin toward my chest). But I've had some recent therapy, and my therapist says I'm demonstrating some access to the muscles in my upper chest and shoulders that I didn't have previously.

    Keep the faith!
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

    Checkout the below CareCure thread about a new way to bowl!
    http://sci.rutgers.edu/forum/showthread.php?t=87066

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