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Thread: ChinaSCINet Update

  1. #391
    Quote Originally Posted by t8burst View Post
    Well I am firmly in the B&B before walking camp. Partly because of that, I can't imagine sticking a tube down the Implement of Obedience and being able to feel it even a little bit, much less totally. Also I have always been... fastidious (that's the nice work for having the OCD purell habit right?) and not having to dig crap out of my ass with my finger every other day is something else I would gladly trade for walking.
    people do it every day that arnt paralyzed or sci injured. to each his own i guess. but i choose walking.

  2. #392
    Quote Originally Posted by Barrington314mx View Post
    people do it every day that arnt paralyzed or sci injured. to each his own i guess. but i choose walking.
    Maybe so but before my accident I managed to make it 44 years without doing it once.

  3. #393
    I don't want ANY sensation back without function. Just thinking about it makes me wince.

  4. #394
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    Cure will not come soon unless some serious things to be done. Just to speed up trials and change the criteria. Patients should be allowed from all over the world to speed up trials. Geron has only two patients till now and Hong kong trial also could not move faster due to this issue. Trials should be both for acutes and chronics. Dose of stem cells or regenerative therapies should be increased.

    May be i can be wrong with my thoughts but really things should come faster.

    I guess Dr Young should be taking initatives for these issues through his good offices.

    Treatment or trial should not be for the one country. If there is something it should be for all. This is double standard that where trials are happening only that country patients can participate.

  5. #395
    Quote Originally Posted by t8burst View Post
    Maybe so but before my accident I managed to make it 44 years without doing it once.
    yea, it for sure sucks. no denying that. and i must say that there would be stipulation behind my decision to choosing to walk instead. it would have to be a "if you didnt know i had a sci, you wouldnt think anything was wrong" kind of walk. lol

  6. #396
    Imight, don't you think it makes a difference how much spinal cord you have in tact? Perhaps it's taken you three years because you only have a little bit more spinal cord than I do (I am Asia A). After all some people who were initially paralyzed walk out of rehab perfectly normally but you haven't - it's not so much to do with how hard they work or whether they were an athlete before their accident but rather that their cord is more in tact and therefore more feedback messages going to the brain to help with balance etc.

    I was a very fit athlete before my accident too - I don't think it counts for much after you've been injured the way we have.

    I think the percentage of spinal cord that can be reconnected will have some bearing on how long it takes to walk again

    Of course we all know it will be extremely hard work but at this stage we don't know how much can be reconnected - who knows your walking problems could be fixed by more fibres grown back.

  7. #397
    Senior Member Imight's Avatar
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    Quote Originally Posted by Christopher Paddon View Post
    Imight, don't you think it makes a difference how much spinal cord you have in tact? Perhaps it's taken you three years because you only have a little bit more spinal cord than I do (I am Asia A). After all some people who were initially paralyzed walk out of rehab perfectly normally but you haven't - it's not so much to do with how hard they work or whether they were an athlete before their accident but rather that their cord is more in tact and therefore more feedback messages going to the brain to help with balance etc.

    I was a very fit athlete before my accident too - I don't think it counts for much after you've been injured the way we have.

    I think the percentage of spinal cord that can be reconnected will have some bearing on how long it takes to walk again

    Of course we all know it will be extremely hard work but at this stage we don't know how much can be reconnected - who knows your walking problems could be fixed by more fibres grown back.
    Definitely which is why I think I would need the minimum dosage of stem cells with the least physio. thus my initial point stating that before they boost, wouldn't it be safer to go with a very incomplete person- Even if Dr. Youngs patient gets motor back, they'll have to go thru at least 1 year of intense physical therapy before they can determine how much they return. we are under the assumption it will go from Asia A to normal, but there is a gradual incline. How do you know it won't be from Asia A to where I am now, Asia C? We're making a gross assumption the cord will repair 100% after having been damaged so long! This is why I highlighted my recovery. Even if stem cells reduce recovery time by half ( say 1.5 years recovery) you still have to go thru the physical change. I've been fortunate to experience my first step, getting on a walker, then crutches then cane, and my point is....it's sooo...damn...hard. True some people walk out a month later, but those are acute and obv their spine wasn't really damaged, just shocked, and swelled. Ours are damaged and being repaired, big dfference.

    There is no way it's going to go from Asia A for years to normal, so easy and quick, I'm a firm believer that if it sounds to good to be true, chances are it is. It will be gradual, sensation will return, and you might be able to move some toes. They may need to increase dosage, and you'll even get all sensation back and move every muscle like I can, but that STILL doesn't take away that your muscles go from zero movement to being able to regain, strength, reflexes, balance (which is mental) and coordination, these things stem cells don't teach. It's in the brain and in the work out. I can move all my limps, toes etc, it started off being able to flex them, then move them, then move them against gravity, this all took a lot of hard work. It's sad when your legs feel like they weight 4 times the amount. or like you're walking in quick sand. you think to yourself...what gives? I can move them all, I can feel them all, just walk! but no, it's not that easy. Even if you healed your spine 100%, you'll still have to strengthen EVERYTHING all over again. No physio, not walking. You'll just have the motor and sensation recovery with no strength that's all. No strength = no balance = no walking. I still don't even know how reflexes take into account, I've come to realize how import reflexes really are lol.

    I'm very sure that going from Asia A to Normal, will require the same motivation, workout session, commitment. I've recovered to max potential but that doesn't take away the recovery process. Most people, after a year, look back at how slow the recovery process is, and it lowers the moral, slowly they just accept that's it, that's all their going to recover, in some, true, it's all the cord has recovered, in others, not true, they have much more, but, they don't see it as 'normal gait' so they just give up. Let's not even get into the insurance, physical therapy facilities and things that you have to find. 3 weeks 1 hour a day, do you think that's enough? not even, that's when you have to get active and go out to the gym and make it happen, those muscles aren't going to strengthen themselves. People make it seem like it's easy, but how many people are dedicated gym rats? majority of humans don't have the resources, motivation or time. Some have to work and have kids. but there is no way you're muscles are going to go from not having supported weight to supporting weight ALL DAY every day unassisted within a couple of years just 'magically', cause the cord is connect now, no way! impossible! that's going to take huge work, consistent work physio work for years to come.

    Another point, I'm starting to get pain back. You know what it feels like, esp some areas that didn't hurt before but hurt now? think of being in a cold shower and how you dont want to bump into anything because its a different hurt, its the kinda hurt that you feel in the bones, no matter how light you bump into something. that's how my right shin is starting to feel now that its recovering. but the good news is, I also felt the surface burn/cut, which was interesting, felt like a paper cut, but the skeletal part felt cold and sensitive, like it had been in cold water and a cold metal pipe hit my shin. Not sure what that's all about but I hope I don't feel that EVERY where under my level of injury T4. umph.
    Last edited by Imight; 08-08-2011 at 09:13 PM.

  8. #398
    Wise thinks some of the people who walk normally have only 10 per cent of their spinal cords in tact whereas you say their cords aren't even damaged.

    The way you put it, perhaps it's not worth it.......................

    It sure was nice being able bodied. I used to do some running and thought I was working hard. My friends I have from back then are still cruising round in their able-bodied bodies

    I think Wise's rationale around using ASIA A in clinical trials is that it is more apparent that function is returning - with ASIA C how would you know what is natural return and what is from the therapy?
    Last edited by Christopher Paddon; 08-08-2011 at 10:27 PM.

  9. #399
    Quote Originally Posted by Christopher Paddon View Post
    I think Wise's rationale around using ASIA A in clinical trials is that it is more apparent that function is returning - with ASIA C how would you know what is natural return and what is from the therapy?
    Bingo. As I understand it, regeneration is the same in completes
    and incompletes; the difference being treatment-related recovery
    is much more obvious in completes.

    I think people underestimate how much "reconnection" has
    to happen after treatment. It's not about amplifying signals
    that already exist in an incomplete spinal cord injury, it's
    about regrowing tracts on new axons the length of a spinal
    cord

    Quote Originally Posted by Wise Young
    Axons must grow all the way to the neurons they need to reconnect to. They are living parts of cells and the part that is cut off from the cell body dies. In cervical and lumbar spinal cord injury, the axons may find neurones just across the injury site and restore some function in adjacent segments. However, for the axons to restore function in more distal segments, such as walking, bladder, sexual, and anal sphincter, they must grow long distances.

    Axons are not wires. You can't reconnect the two ends of axons because the distal of the axon that has cut off from the neuronal cell body dies. That is one of the reasons why regeneration was considered by many scientists to be such a difficult and some even think an impossible task.

    Regeneration alone may not be sufficient in some cases. For example, the neurons that the axons need to connect to may no longer be there or have changed. Regenerating axons also are likely to connect with inappropriate neurons.
    SOURCE

    There seems to be an explanation for early sensory improvement
    and an explanation for why improvement may take a while or not
    even happen at all, all within that quote.
    Last edited by Buck503; 08-08-2011 at 09:58 PM.

  10. #400
    Also I think Imight could be thinking that someone who walks out of rehab has a normal spinal cord, that because after 3 years he has recovered quite a bit that he has 50% of his spinal cord across the injury site and that completes have 0% of their spinal cord.

    But Wise has said people can walk quite normally with 10% of their cord in tact at the injury site.

    The difference between someone who can walk badly and an Asia A complete might only be 1 or 2% more axons damaged (for mid thoracic)

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