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Spinal Cord Injury Network USA (SCINetUSA)

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    Originally posted by Jim View Post
    Question for you:

    Dr. Young states the exercise therapy significantly helped bowel and bladder. Enough so that people were having bowel movements on a regular basis without the use of suppositories.

    However, I also know from previous talks that "volitional muscle movement" did not really come back. I assume much feeling did not really come back either.

    So (with or without the cells) are people able to tell when they have to go to the bathroom, and if so are they able to hold it in long enough to not have an accident?

    If they are having daily bowel movements without suppositories, but do not have feeling or sphincter control, wouldn't that create an entirely new set of problems?

    Thanks in advance,



      Thank you very much for the reply. The lack of information on the people that have been in the trial is discouraging, but what you are telling me is very encouraging.

      It would be great to get some specific information. It is odd to not have it available. After a study or experiment I always seem to hear, "there wasn't much gaines in movement but there was help to bladder and bowel function"... But there's never any detail on what that improvement was. To the point where I feel like it's just something that everyone says.

      Hopefully more information will come out eventually.

      I mean I scour the news on an almost daily basis for SCI information. You would think that if a study was done where 25% (much more for bowel and bladder) of the people included had "complete long-term chronic injuries", and with no medicine other than extreme walking exercises are now walking fairly decent distances, getting rid of catheters, and have control of their bowels, it would be an enormous story. It should revolutionize the way SCI subacute, acute, and long-term therapy centers deal with their patients. Especially the big guys like Kessler, etc.

      You would think they would stop throwing people onto a mat, stretching them out for 30 minutes, and sending them back to their rooms to watch TV. Get them up and moving. Even if it's for an hour or two a day!!! I don't get it.

      And imagine the life-changing difference it can make with incomplete injuries? People who are already weight bearing and maybe can even take some steps. They are probably most of the way there and just need extensive time on a treadmill with harness.


      • SCI-Nurse
        SCI-Nurse commented
        Editing a comment
        Of course you can private pay$$$$$ for this, but you won't find that included in the contracts that Big Insurance has with rehabilitation centers. Most pay a set amount/admission or per day, and it doesn't include 6 hours of PT! (KLD)

      Obviously insurance is not going to pay for 6 hours of therapy per day. But they will pay for 2. And if moving is what is helping, those hours should be spent doing so!

      Kessler is considered the gold standard. Yet it is a joke. It's a factory, the therapists are kids, and the patients are not meant to be rehabilitated. Part of that is money. But a larger part is this information (If accurate) is not really out there!

      I could have been weight-bearing, and taking steps the entire time I was at Kessler. Instead they did not get me up on my feet once. It took an amazing therapist with a PhD at an unknown virtual nursing home to take me on as a "special project", treat me like a human being, and try to rehabilitate me. And she also only had one hour per day and some other time she would give me when it was available. Within weeks I was walking in parallel bars.

      So yes, while insurance is an issue and they are never going to pay for such extremes, it's not even close to the entire reason people aren't getting the rehabilitation they need.

      On the flip side, I do have to be sensitive to the fact I was a little "lucky"... If I was a complete injury and unable to do these things, that amazing therapist would not have been able to do what she did with me at all with their resources. So what I am saying is definitely biased. But I'll tell you, before my right leg worked there were four people helping me do laps around that building on a platform walker until I was able to take the steps on my own. I couldn't do it for hours a day but I did it for 20 or 30 minutes and that got me started to be able to walk on a treadmill and build up from there...

      Now if I can just talk myself into getting on that same damn treadmill for hours and hours a day, maybe I could change my life. But 20 minutes feels like an eternity.


      • Barrington314mx
        Barrington314mx commented
        Editing a comment
        My thought is, insurance wont pay for it right now because there is no proof of benefit. But if there were from a new study, maybe that changes things?

      When is the next Open House?


      Wise was supposed to be away for Sept OH, trip was canceled, so OH is Sept 9th, on Zoom, and in person! We have a new AV system in our conference room that makes it possible to do both. Will post Zoom details soon.


      • sriv
        sriv commented
        Editing a comment
        That is nice! I really hope the remote sessions do not stop, because it is really great for the rest of us who cannot be their in-person at Rutgers. :-)

      Here's the info-