Thread: ChinaSCINet Update

  1. #1541
    Member tritro2085's Avatar
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    Dr. Young

    I posted this idea before,


    I'm not a neurologist or neurophysiologist, maybe the CPG kicking in first is a good thing, most infants and toddlers I knew/know are able to crawl, walk, or squat up & down before being able to successfully manipulate their legs. They're like machines all they know is GO. We've all heard learn to walk before you run right? Well maybe since a form of a connection has been made, "Running" using CPG first is the way to activate (Muscle & Nerve memory) and strengthened the group of muscles, while "walking" is gaining control of voluntary movement so manipulation can be achieved. They learn to walk and run long before they, stomp, jump, or tap their feet. Just an idea.

    do you think it may have any merit?
    I do like Johnny Walker says and Keep Walking

  2. #1542
    Quote Originally Posted by tritro2085 View Post
    Dr. Young

    I posted this idea before,


    I'm not a neurologist or neurophysiologist, maybe the CPG kicking in first is a good thing, most infants and toddlers I knew/know are able to crawl, walk, or squat up & down before being able to successfully manipulate their legs. They're like machines all they know is GO. We've all heard learn to walk before you run right? Well maybe since a form of a connection has been made, "Running" using CPG first is the way to activate (Muscle & Nerve memory) and strengthened the group of muscles, while "walking" is gaining control of voluntary movement so manipulation can be achieved. They learn to walk and run long before they, stomp, jump, or tap their feet. Just an idea.

    do you think it may have any merit?
    I agree. I don't think that it is bad that regenerating axons activate CPG first before voluntary control of the muscles. In the same way, I hope that regenerating axons can activate micturition (the act of going to the bathroom).

    Wise.

  3. #1543
    Quote Originally Posted by Wise Young View Post
    I agree. I don't think that it is bad that regenerating axons activate CPG first before voluntary control of the muscles. In the same way, I hope that regenerating axons can activate micturition (the act of going to the bathroom).

    Wise.
    Is it possible to control urination without the accompanying sensation? Forgive my ignorance on this...I know that, even with thoracic, complete injuries some people can sort of feel they have a full bladder, a certain abdominal tightness, but is this a common thing in incomplete injuries? I.e. that people can initiate micturition without sensation?

  4. #1544
    Quote Originally Posted by ay2012 View Post
    Is it possible to control urination without the accompanying sensation? Forgive my ignorance on this...I know that, even with thoracic, complete injuries some people can sort of feel they have a full bladder, a certain abdominal tightness, but is this a common thing in incomplete injuries? I.e. that people can initiate micturition without sensation?
    Good question. Im a complete injury but I can usually tell when my bladder is full. It obviously not the same sensation as before, and honestly I can't even describe how I know, I just do. Ive often wondered if others were the same way.

  5. #1545
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    Same here with my bladder. I'm T8 ASIA A. This started a couple years after I was injured. It will wake me up at night even.

  6. #1546
    Quote Originally Posted by Barrington314mx View Post
    Good question. Im a complete injury but I can usually tell when my bladder is full. It obviously not the same sensation as before, and honestly I can't even describe how I know, I just do. Ive often wondered if others were the same way.
    I'm a T12 complete and can also tell when my bladder is full. Although it's hard to describe the sensation, I'm also aware that I need to cath when I start having lots of spasms.

    Clayton
    "Wheelie Wanna Walk!"

  7. #1547
    Quote Originally Posted by Geoman View Post
    I'm a T12 complete and can also tell when my bladder is full. Although it's hard to describe the sensation, I'm also aware that I need to cath when I start having lots of spasms.

    Clayton
    So I guess, there are two issues to separate here: whether or not and how well you can feel you need to go (sensation, tightness, etc.) and being able to voluntarily void i.e. without a catheter. I wonder if they necessarily go hand-in-hand.

  8. #1548
    Quote Originally Posted by Wise Young View Post
    Please be patient. The program is not "pretty simple". Perhaps my description had oversimplified it but every patient is different and the practice has evolved over the years that I have visited Kunming (since 2004). I have been trying to arrange for the locomotor program to be published. This will take time because there is no manual for the program and each patient is assessed and provided with his or her own customized program, depending on level, severity, the availability of family and aides, etc.

    When I last spoke to Dr. Hui Zhu about when her program will be ready and able to take large numbers of patients, she mentioned 2 months from now. Several American families are already there. I am hoping that one of them will actually write down their description of the program and work with Zhu Hui to get some kind of official description and video presentation of the various stages of the training out.

    Wise.
    I don't mean to come across at all flippant but I was thinking about this again: I find it a little odd that there isn't a manual for the locomotor training. Wouldn't this delay the transmission of the program for the US trials, which are to begin this year? Wouldn't it also delay writing up a paper that accompanies the trial data? Or is the core of the training, six hours a day of attempted walking using a rolling cart with or without physiotherapist help, sufficient for the paper and sufficient for the US centres to then adapt as they see fit?

  9. #1549
    Quote Originally Posted by ay2012 View Post
    Is it possible to control urination without the accompanying sensation? Forgive my ignorance on this...I know that, even with thoracic, complete injuries some people can sort of feel they have a full bladder, a certain abdominal tightness, but is this a common thing in incomplete injuries? I.e. that people can initiate micturition without sensation?
    ay2012,

    Most of us (at least at one time when we were very young or are very old with a full bladder) know the sinking feeling when the bladder micturates involuntarily.

    The sensation of a full bladder does suggest that some feelings are coming through, although those feelings may not necessarily go through the spinal cord or through "regular" channels. For example, a full bladder could trigger spasticity in the legs or dysautonomia such as sweating, shivering, and changes in heart rate, etc. But, in my experience, people who report that they can feel a full bladder often start recovering other sensation in the pelvic area, such as anal or penile sensation.

    There is research suggesting that some women with severe spinal cord injuries can experience orgasms with genital stimulation, suggesting that there is an alternate pathway (perhaps through the vagus nerve, the tenth cranial nerve, which is known to extend to the pelvis) for sensations to reach the brain. Being able to sense the fullness of the bladder doesn't that you can control your bladder but I think that it is good to be able to detect that your bladder is full.

    Micturition is a good example of a situation where a person can initiate micturition but cannot control individual bladder muscles. On the other hand, I have not talked with anybody who can reliably initiate micturition without having any sensation of the bladder. Most of the time, sensation comes first and then ability to control micturition comes after the sensation.

    On the other hand, I have seen people who can walk but cannot move their limbs as well when they are lying down. Some cannot feel their legs and are walking. These are not just my observations. Dr. Zhu Hui says that most people who have recovered ability to walk in Kunming cannot voluntarily move their legs as well when they are lying down and are asked to move their legs.

    To tell you the truth, I am sort of surprised that there are not more people on CareCure who are walking but who cannot move their legs as well when they are lying down.

    Wise.

  10. #1550
    Quote Originally Posted by ay2012 View Post
    I don't mean to come across at all flippant but I was thinking about this again: I find it a little odd that there isn't a manual for the locomotor training. Wouldn't this delay the transmission of the program for the US trials, which are to begin this year? Wouldn't it also delay writing up a paper that accompanies the trial data? Or is the core of the training, six hours a day of attempted walking using a rolling cart with or without physiotherapist help, sufficient for the paper and sufficient for the US centres to then adapt as they see fit?
    ay2012,

    Please, why should it be odd? When I went to Kunming in 2004, I found an army hospital walking hundreds of spinal-injured patients in the most intense locomotor training that I have ever seen. When I questioned them about the procedure, they showed me their techniques, explained their philosophy, and told me that they push the patients to walk to tolerance. I coined the term 6:6:6 to describe the intensity and duration of the training but of course not everybody reaches that 6 hours a day, 6 days a week, for 6 months. Much depends on the motivation of the individual patient.

    The program not only differs from patient to patient, depends on the level and severity of injury, but relies on motivation and progress shown by the patient. All patients reach plateau phases in their training and get discouraged when they do not progress. So, the doctors and nursing staff are constantly thinking of what they can do to motivate and help the patient to move to the next level. They sometimes do untethering surgery and have tried many other therapies over the years. It is an organic, passionate, and caring program that is hard to describe, much less document systematically.

    Followup of the patients is limited to a small minority of patients, usually the best responders. In our upcoming trial, we want to monitor the amount of walking by the patients, using a pedometer and daily diaries. We want to make sure that we get 6-week, 3-month, 6-months, and 12-month followup of the patients. In fact, once they leave, it is very hard to convince a patient to come back for followup. Travel is expensive and very difficult. Family members must accompany the person. In China, family members are in short supply because there are few or no siblings in families.

    We are very concerned that some patients are losing whatever progress they have made when they go home and sit for 6 months without doing any walking. You also cannot begin to imagine the poverty of many of our patients. Some don't have enough to eat. Many do not have access to medical services. It takes our nurse/doctor teams days to travel to remote villages, often many hours by airplane, train, car, and walking. So, we are going to try to keep the patients in the hospital for as long as possible after the treatment.

    I have been going to Kunming several times a year since 2006. I have brought scores of doctors to see the program. When I formed SCINetUSA, the investigators spent many hours discussing what kind of rehabilitation program would be feasible in the United States. The consensus was that an inpatient 6:6:6 walking program would not be possible and would be impossibly expensive. However, a 3:3:3 (3 hours a day, 3 days a week outpatient program for 3 months) program should be doable. Due to funding limitations, we may have to end up with doing only 6 weeks of outpatient rehabilitation in the U.S. trial. Even so, the cost will probably be over $100,000 per patient for the surgery and rehabilitation.

    Wise.
    Last edited by Wise Young; 01-23-2013 at 06:01 AM.

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