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Thread: why do incompletes fall in the grey zone of a cure ??

  1. #21
    Senior Member mikek's Avatar
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    Wise,
    I have tried just about all the therapies ,you mentioned and about 5 that would be considered holistic medicine.The weight supported ambulation, I did at Healthsouth. It was great but it took them 20 minutes to get me into the harness and do the setup,then I had 30 minutes on the autoambulator treadmill 3x a week for 2 months. Total walking weight supported was 30% at start and 62% of my weight after 2 months with exercise at home and in pool. An hour and 1/2 a week isn't enough and Medicare wanted to cut my therapy after 1 month and I did get 2 months.In 1968, I was in rehab for 7 months and had 2, 3 hour sessions a day. If I had the same accident today, I have no doubt I would have been discharged in a wheelchair and left to my own devices.The present system sucks and getting the therapies you mentioned on a rigid daily schedule really doesn't exist,unless you go to a Project Walk and can afford the thousands of Dollars that insurance won't pay.At this time in my life, I know that my nerves and muscles aren't firing with response the way they did when I was a young incomplete.I see cell transplant as my only option to maybe get the nerve and interaction of muscle response that I need to get me on my feet again.Your honesty and tireless efforts are so mich appreciated, and have always inspired me to keep my hopes alive.

    Mike

  2. #22
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    Quote Originally Posted by mikek
    Any incomplete's agree with me ?? I certainly want to be out of this wheelchair and hope all of us will someday.
    I’m not sure if I completely agree with you. As I understand there are some clinical trials starting in Finland next year for treating Alzheimer, those are not “complete” when it comes to the brain, and I guess we can refer to them as well as “incomplete”. I understands that there is ongoing other therapies studies as well for partial fixing of some brain damages. When it comes to the spinal cord I guess it depends on what the “cure” will be. If it is a kind of medium that will be injected to the cord I believe it will work as much on incomplete as it will work on complete. If we compare to a car engine with no lubricant oil on it at all, we have to fill it completely up, if the engine just needs a litre of oil its just to fill up that volume. Am I right here? It’s just a matter to have the snowball rolling and get some speed; as it accelerates it will get more speed and get bigger. The only problem here as I see it is political willingness to have this started and move on. But I completely agree with you on the wheelchair part and hopes that both you and others will.

  3. #23
    Senior Member mikek's Avatar
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    Leif,
    You really do agree with me as I was only talking about Spinal Cord Injuries and not other nuerological diseases that affect the spinal cord.

    Wise, that's great and without you we would be really screwed.It is frustrating and what I always felt was your understanding and compassion of the situation.

    Mike

  4. #24

    Regression

    It seems that some people experience regression of recovery, while others continue to make gains. I'm walking C5-C6 7 years post-injury. I was just wondering at which point some incompletes started losing function, and to what extent. Conversely, for those that continued to recover, how long post-injury did this occur, and how significant was it.

  5. #25
    Quote Originally Posted by mikek
    Leif,
    You really do agree with me as I was only talking about Spinal Cord Injuries and not other nuerological diseases that affect the spinal cord.

    Wise, that's great and without you we would be really screwed.It is frustrating and what I always felt was your understanding and compassion of the situation.

    Mike
    We need to coin a word for the kind of rehabilitation that we are talking about. The rehabilitation that people encounter often after spinal cord injury is the rehabilitation philosophy that was developed shortly after World War II when doctors were still struggling to keep people alive and they pioneered the concept of teaching people to make the most of what they have. But, it has become clear that recovery is the rule and not the exception in spinal cord injury. This is going to be more and more the case when therapies start restoring therapies. The therapies will make people with "complete" spinal cord injury more "incomplete". It will make "incomplete" injuries more functional. It is also quite apparent that this is a long term process and not one that could be achieved at one go in a hospital setting. Many rehabilitation centers have not yet grasped this concept and have not yet provided the additional services that are required for people to recover. That is one of the reason why there are organizations such as Project Walk and other places around. Perhaps we should call the new approach "enlightened rehabilitation".

    I believe that the rules of rehabilitation apply regardless of the cause of injury. That is one of the main reasons why I have set up a forum for Transverse Myelitis and Atraumatic Spinal Cord Injury. Because most of the emphasis has been on people with traumatic spinal cord injury, many people who suffered spinal cord injury from other causes assume that they have different injuries and therefore are not eligible for the same therapeutic approaches. This is not true, in my opinion. There are of course differences but the principles of rehabilitation are similar. Rehabilitation is about recovery and there is a science of recovery that needs to be established. This is beginning to happen and it is essential for the "cure".

    Wise.

  6. #26
    Quote Originally Posted by Donny247
    It seems that some people experience regression of recovery, while others continue to make gains. I'm walking C5-C6 7 years post-injury. I was just wondering at which point some incompletes started losing function, and to what extent. Conversely, for those that continued to recover, how long post-injury did this occur, and how significant was it.
    Donny, "regression" is relatively rare after spinal cord injury and it is important that people find out why the are regressing. It may be from a physical cause, such as compression of the spinal cord, roots, or peripheral nerve. While there has been much talk about age-related deterioration in spinal cord injury, the more that I have looked for this phenomenon, the more elusive it has become. About a decade ago, I was worried that there may be a phenomenon in spinal cord injury that is similar to the post-polio syndrome. However, I don't think that this is true, at least not for most people. True idiopathic loss of function long time after injury are rare. I think that we should make the assumption that we do in a person without spinal cord injury, i.e. let us find out whether there is a cause before we assume that it is due to the spinal cord injury or aging.

    Wise.

  7. #27
    Wise

    It is not possible for me to go to Bergen

    But if you talk to Hjeltnes tell him about my frustration. I just came home from the hospital he is working and nobody knew anything. I really mean anything. I knew more than them and they could not answer any of my question. And he has been out in permission, I have not seen him for more than two years. And since this is the only SCI hospital, I can't go any other place.
    TH 12, 43 years post

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