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Thread: A little recovery.. goes how far?

  1. #11
    True. Couldn't roll over. That was traumatic. I also couldn't hold a book or turn pages, which for me was worse. The OT's in ICU looked at me like I was crazy. Nobody had ever asked for reading adaptations. WTH, there was no TV!

    I have no idea what the MANY previous sci's that went thru Ben Taub in Houston requested. Bulletproof vests? New cars? OMG let me die maybe?

    If your pt won't acknowledge the possibility of return, you have a problem. I think curt is right about checking out 4ap (fampridine). My pt in rehab made me choose-return or w/chair skills. When I bash my head now I know I made a reckless choice. Made the pt angry, he told me I think I'm hot shit. I chose to take that as a compliment. I'm pretty sure it wasn't intended that way.

    My rehab OT hooked me up w/ an experimental VA treatment, suspended treadmill ambulation. Revolutionary in 2000 for some reason. Kind of a rite of passage for possible-ambulators by now.

    Curt-You should have gone. It was a cushy setup and you could have kneecapped my icky Peeping Tom!

  2. #12
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    Jackson, I started my own plan 8+ years after. I was in hospital 5+ years with all kind of issues. Even tossed in mental hospital because I stopped all medication and woudl not allow them to give me any. Anyhow, your "piece-bt-piece" approach is a great way to accomplish this. And keep the pieces miniscule.

  3. #13
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    Bethany sounds like what I finally discouvered years later. EVERYONE BETTER BE WORKING ON THE SAME PAGE AND GOALS. If that is not happening immediately bring it up with all involved - you, doctor and therapist. Do not be scared to do this. They are getting paid. That incorrect communication can lead to incorrect therapy as well as equipment that your body can become accustomed to even if that is not yor goal.

  4. #14
    Two years post is B.S also I am 6 years out and still make gains. Very small granted but even the smallest change can be huge!! I will tell you to push as hard as you can,dont get consumed with it,and settle in it take a long time. It does get better and just because your life is different now its not over. I wish you the best as do all on here

  5. #15
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    I freaking love you guys. I love your stories and advice..
    We're getting worried lately. We look at the muscle charts online , showing all of the muscles in the legs, and its like.. hmm, we do E-stim on just a few of these but there are all of these other ones that are getting no attention at all- How many of them do you need to actually be able to walk? Should we be zapping the shit out of his legs all over the place , making sure that we cover every single one, or is it okay to just focus on the couple of major ones? Its overwhelming to us thinking that there are so many that are wasting away .
    I was thinking the same about standing. I haven't figured out how I'm going to get him upright yet, but I've read more than once about the benefits and I think it should be incorporated for sure.. If we could just somehow figure out how to get rid of all of this PAIN , we could focus more on recovery instead of just treading water

  6. #16
    Wow! You guys are doing fantastic.
    Unfortunately after over 4 years my husband did not get anything back as a C3, but we love hearing how well others do-especially the young ones.

  7. #17
    Senior Member trekker6's Avatar
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    Quote Originally Posted by JacksonsGirl View Post
    I freaking love you guys. I love your stories and advice..

    I was thinking the same about standing. I haven't figured out how I'm going to get him upright yet, but I've read more than once about the benefits and I think it should be incorporated for sure.. If we could just somehow figure out how to get rid of all of this PAIN , we could focus more on recovery instead of just treading water
    Get him in a standing frame as much as possible, it'll be hard at first but definitely worth it.
    "Would you rather reduce deficits and interest rates by raising revenue from those who are not now paying their fair share, or would you rather accept larger budget deficits, higher interest rates, and higher unemployment? And I think I know your answer." Ronald Reagan"

  8. #18
    Jackson Girl- The physical benefits are well established for weight bearing. The psychological benefits can't be over looked either. I remember standing on the back porch looking into the back yard. It helped me believe. That may have been as big as anything.

    As for the Estim. I spent 3 months riding one. The quads, hammys, and glutes are huge for walking. I don't think you can do too many more than that. But really I am not sure on that. The stim will help slow the atrophe for sure.

    You need to work the hip flexors and abductors (outer thigh) and adductor (groin) on your own. There just aint enough time at therapy.Try therapy skates or some other way to remove gravity. Many times we can move but are not strong enough to fight gravity. Removing gravity may be the key. He can try to do the movements and you can help move him. At the very least he will be getting his ROM which can't hurt. Stay limber. Do not slack on the stretching. Can't over emphasize that.

    We have to stick together.

  9. #19
    Yes, trying to figure all this out can be overwhelming. His PT should be able to test him for motor ability and strength. From there,it'll be a matter of working the program they give you as well as extra credit work you do on your own. I was recently bemoaning to my PT that my calves hadn't returned. She said I didn't need them. As long as there is hip strength, she felt she could get anyone on their feet. I agree with the posts about standing. Ask his therapist to try it and provide advice on how to do it at home.

  10. #20
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    This really sucks, but I have to say it. The first time I fell on the floor, 9 months after coming home, they never once showed, or let me try it.......getting off the floor.....ALONE....... I couldn't do it, no one was around, I was looking at hours, not that it was a bad place either. But the lack of something to do, what if someone stopped by, how do I explain, raced through my head. Cuts on the feet, sweat, and bangs and some 15 minutes later I got to the point of being on my knees. Being the optimist I am, gee I'm half way there, well I was, it's just that the last time I was in this position was almost a year ago, and now how do I finish it? 20 more minutes! finally made it up to the bed, it now looked like I had been gang raped by bikers in there, than the worst,,,, COMPANY...... came to check on me. I had to explain everything, and vowed to try and get things better for the next time. At this point I went full speed ahead into strength, and trying to get off the floor, in a better place at first, and I would once again try that same place that seemed so impossible that day, a few months later.

    Every time I drop something on the floor, a lot, in the same spot, I can't help but remember that day 8 years later. The wallet, knife, soapstones, pills, always like to go there too. At least I'm a champ at it now, even worse when I fall out and about, and I do, I always tell the people if there are any around "don't worry,, it's hard to fall off the floor now, don't worry I'm Okay, I can get up myself".

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