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Thread: Expansion of Kunming Programme

  1. #11
    Quote Originally Posted by ay2012 View Post
    And while I made gains in rehab (I'm young, fit, and pushed myself in rehab as hard and as long as anyone else I saw there when newly injured) after a year I was what I am today: an SCI individual with a complete thoracic injury.



    From the perspective of a rehab doctor you´ve forgot to mention : A complete thoracic injury has the worst prognosis in SCI. The thoracic spinal cord is special in his blood circulation and is very thin. When you damage the thoracic spinal cord there are dying a way more cells. But I hear you....Im also a poor pig with a complete thoracic injury....

  2. #12

    answer to ay2012

    Hello,

    I've been following your recent posts and am aware of your views on the limitations of long term physiotherapy / walking training / etc. for spinal cord injury. These views are shared by a lot of people, both medical workers and people with SCI, and you make many valid points. Of course we are all waiting and hoping for a medical cure for SCI. In the meantime, people make different choices as to how they live with the condition -- although too many people do not have much choice because the cost of rehab therapy is prohibitive.

    Medical tourism is a fact. People in Hong Kong, where we live, routinely go to Bangkok for everything from dentistry to heart surgery, because the treatment is of a very high standard and the costs are a fraction of what they are in Hong Kong. Medical tourism is not in itself a bad thing -- although I take your point that one has to be wary of dubious treatments offered by unscrupulous practitioners in places where lack of regulation allows them to get away with it. The Kunming programme is not in that category -- as nrf points out, what's so bad about a place that offers good treatment in a pleasant environment at a low cost?

    The doctors and therapists at the Kunming programme do not make unrealistic promises. Like every rehab provider I have ever encountered or read about, they emphasise that results will vary, that the time needed to achieve results will vary and that there are no guarantees. This is very much the line that Project Walk takes, and I find the approach here very similar to that of Project Walk (my son has never been there, but he has worked with two PW trained therapists and we know several people who have attended the programme). It appears to be a great programme and many people have got a lot of benefit from it -- but it costs more than 100 US$ an hour so is out of the reach of all but a happy few.

    For those who would like to give intensive, prolonged rehab a go, Kunming offers a solution that is more affordable to more people. There are also those who feel that extended rehab is a waste of time and prefer to get on with other aspects of their lives while waiting for a medical cure.

  3. #13
    Senior Member Imight's Avatar
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    How are you? How's David?

    I actually thought about you the other day. I just returned from Shenzhen. It was actually a much more accessible city but still, as you know, chinese standard as far as shops having 3-4 steps in the front. By accessible I mean the streets were flat, wide, ramps, and accessible subway, far better than Qingdao. The taxi's were bigger too, so I could fit my chair in the trunk AND close it LOL.

    I was going to call you to ask if David has gone thru the surgery yet, but it appears he hasnt. Im still waiting on that, to see if it actually works. I'm 5 years post now, and to cough up that much only for it not to work is not ideal. I still think I could benefit from the intense therapy tho. I mean I'm at level IV, if they could get me to V, I would be very happy, that means walking farther and with a cane at least, but she keeps insisting on the surgery blah.

  4. #14
    Mamadavid, tomsonite, others: you make some good points. Perhaps my posts don't reflect as much but I agree it is a very fine balance between trying to get the most out of recovery, devoting yourself to this recovery, and 'getting on with life' while pushing for what we all want: a biological cure.
    Tomsonite: I'm not saying the people at Kunming or other rehab centers have explicitly made bold promises. In fact, this (and the documented beneficial effects of rehab especially for incomplete injuries) is why perhaps me labeling it as pure medical tourism is a bit strong. But the way that many SCIs who I've spoken with view this continual rehab is what is most troubling to me. The individuals who continue to spend their scarce dollars for hours per week at specialized SCI rehab gyms, despite limited gains over very long periods of time, is to my mind a bad thing. Of course, everyone has the right to do what they want, who am I to tell them they don't have a chance, yadda yadda yadda but having rehab be your full time job for years is not wise in my opinion. I'm not talking about a few hours per week or even an hour per day.... But if it gets in the way of having a life, getting an education, being in the workforce (if these are things that are an option), I'd be worried. I'm not against giving it a shot, I'm not against trying to defy the odds, but I'm uncomfortable with the open-ended thinking that can come with this: if only you work a little harder, a little longer, something good COULD happen. I'm sorry, but likely not. Or if so, IN MY OPINION the gain isn't worth the time or effort. Again, I realize this is a personal consideration.
    If I could sum up my viewpoint it's that intensive rehab, for those of us with the most severe injuries, is at best a crapshoot. It's the best crapshoot we have at the moment, sure. But it's not a cure.... And if you'd look at where this post is, it's in the cure forum. Perhaps it would be more appropriate in exercise and recovery.

  5. #15

    move to exercise and recovery?

    Yes, ay2012, this thread probably belongs in exercise and recovery. I posted here because of the "Kunming and medical tourism" thread in this section.

  6. #16
    Quote Originally Posted by ay2012 View Post
    Mamadavid, tomsonite, others: you make some good points. Perhaps my posts don't reflect as much but I agree it is a very fine balance between trying to get the most out of recovery, devoting yourself to this recovery, and 'getting on with life' while pushing for what we all want: a biological cure.
    Tomsonite: I'm not saying the people at Kunming or other rehab centers have explicitly made bold promises. In fact, this (and the documented beneficial effects of rehab especially for incomplete injuries) is why perhaps me labeling it as pure medical tourism is a bit strong. But the way that many SCIs who I've spoken with view this continual rehab is what is most troubling to me. The individuals who continue to spend their scarce dollars for hours per week at specialized SCI rehab gyms, despite limited gains over very long periods of time, is to my mind a bad thing. Of course, everyone has the right to do what they want, who am I to tell them they don't have a chance, yadda yadda yadda but having rehab be your full time job for years is not wise in my opinion. I'm not talking about a few hours per week or even an hour per day.... But if it gets in the way of having a life, getting an education, being in the workforce (if these are things that are an option), I'd be worried. I'm not against giving it a shot, I'm not against trying to defy the odds, but I'm uncomfortable with the open-ended thinking that can come with this: if only you work a little harder, a little longer, something good COULD happen. I'm sorry, but likely not. Or if so, IN MY OPINION the gain isn't worth the time or effort. Again, I realize this is a personal consideration.
    If I could sum up my viewpoint it's that intensive rehab, for those of us with the most severe injuries, is at best a crapshoot. It's the best crapshoot we have at the moment, sure. But it's not a cure.... And if you'd look at where this post is, it's in the cure forum. Perhaps it would be more appropriate in exercise and recovery.
    I feel like that is a better explanation of your views on the subject. I 100% agree that rehab shouldn't be anyone's "full time job" for years on end. As an SCI exercise trainer, I'll officially state that I believe that for the majority of people with SCIs, high volume, high intensity exercise will NOT restore walking. I think it can restore meaningful function for a lot people but as far as becoming a full-time community ambulator, that will not happen for the majority of SCIs. That is not to say it doesn't happen...I've seen it happen, and I've seen it happen to people who I would not have guessed would re-gain walking ability. So I understand why everyone, at some point in their life, may want to try high-volume, high-intensity rehab. But again I 100% agree that it shouldn't get in the way of living the rest of your life. If people do chose to do that, however, I sure as hell am not in a place to tell them they shouldn't.

  7. #17
    So getting back on topic, mamadavid, what are some of the other exercises David does besides the intensive locomotor training? You mentioned he has gotten some return of hand function, is that from specifically working on hands or is that a by-product of everything else he has been doing?

  8. #18

    more about B&B, hand function tomorrow

    Sorry everyone, it's past midnight here in Kunming, even though you are all probably on your first coffee break of the morning! I promise I'll get back to you tomorrow with more information on the programme, including the bladder training and OT.

  9. #19
    Senior Member Imight's Avatar
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    Quote Originally Posted by tomsonite View Post
    I feel like that is a better explanation of your views on the subject. I 100% agree that rehab shouldn't be anyone's "full time job" for years on end. As an SCI exercise trainer, I'll officially state that I believe that for the majority of people with SCIs, high volume, high intensity exercise will NOT restore walking. I think it can restore meaningful function for a lot people but as far as becoming a full-time community ambulator, that will not happen for the majority of SCIs. That is not to say it doesn't happen...I've seen it happen, and I've seen it happen to people who I would not have guessed would re-gain walking ability. So I understand why everyone, at some point in their life, may want to try high-volume, high-intensity rehab. But again I 100% agree that it shouldn't get in the way of living the rest of your life. If people do chose to do that, however, I sure as hell am not in a place to tell them they shouldn't.
    I have to agree with this. My first 3 years I worked full time extensively and I walk with forearm crutches, however I hit a plateau and just had to accept the fact that my nerves no matter how strong I got my existing muscles, weren't going to allow me to walk. I can use 2 canes, but it's sorta dangerous and uses A LOT of energy, heck I can even walk a few yards without anything. but once I saw that I wasn't gaining anything (took a solid year of training hard) I realized that, this is it....its done. Now, that's not to say I wouldnt give it another try, because some say that you get small gains here and there as you progress. I think everyone should go back to PT every once in awhile to see if they recovered something, also I think you should maintain your physique because IF the cure comes, you'll recover faster. You DO NOT want to lose your range of motion, or lose your muscle period. It'll make recovery a full time job (after the cure), to the point where you're trying to walk for years while those that maintained are gaining within a year or 2 and without breaks and tears.

    It's a balance. I think you should work out to keep in shape and lose what you gained (all humans should work out actually), but at the same time, you have to live life. wasting TONS of money when you're not gaining is a waste. Keep it balanced.

  10. #20
    I kind of want to hear about the change in living coming from the US to China. Thank you mamadavid.

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