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Thread: Hello from Hong Kong

  1. #31
    Quote Originally Posted by Wise Young View Post
    Most of the patients in the pictures were ASIA A at the time of surgery (between 2-60 days after injury) but some had become incomplete after the surgery and started recovering. In Kunming, they have developed a new surgical approach, when combined with intensive locomotor training, apparently will allow as many as 50% of "complete" (ASIA A) patients recover unassisted locomotion. This of course needs to be confirmed with further clinical trials.

    We are very interested in the intensive locomotor training program for our clinical trials for the following reasons.

    1. So many of patients did recover unassisted walking after the surgery that had made them ASIA B or C. In some ways, this would be analogous to regenerative therapy making chronic ASIA A patients become incomplete.

    2. It is the most intensive locomotor training program that we have seen. It does differ from all the programs in Europe and the U.S., all of which have not shown significant improvement of locomotion in ASIA A patients.

    3. The locomotor training appears to be beneficial for the patients in other ways, including much lower incidences of bladder infection and decubiti, and reduced constipation.

    The treadmill training is more labor intensive and cannot accomodate as many subjects. At the Kunming Army General Hospital, they actually can train over a hundred patients a day.

    Wise.
    Wise, do the patient recive any therapy like metilprednisolone before myelotomy?
    As I understand myelotomy is performed many days after injury. What about if the patient needs stabilization surgery? Do they wait untill they perform the myelotomy?

    Thanks

    Paolo

  2. #32
    Senior Member Leo's Avatar
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    Wow Jim,

    what a great report..........amazing


    Quote Originally Posted by Jim View Post
    First thing Monday morning the neurosurgeons observed myelotomy surgeries of 2 newly injured patients. I know one patient was injected with cells, not sure what type.

    While the neurosurgeons were observing operations, the rest of the group met at the Spinal Cord Injury Center at Kunming Army Hospital. We were greeted with open arms by the staff, which seemed to consist of mostly nurses. It was a beautiful morning, the windows were open and a nice breeze was circulating throughout the center. The halls were filled with walking patients, most using rolling upper body supported walkers, some with 4 point walkers, a few with crutches and a few with nothing at all. We watched the walking for a while, listened to their stories, asked their levels of injury, and when they were injured. We were then led to the occupational therapy room. There were about a half dozen stations with different activities. I visited with a few patients and heard their stories through translation. Two were injured working in a mine.


    The SCI Center at Kunming Army General Hospital had about 105 SCI Patients. Many patients’ family members help with their care/walking while other families hire aids to assist there loved ones. After spending a short time at the hospital, it became very apparent it was a special place, and the spirits of the people made it that way. The staff of nurses seemed to run the show, and the patients followed. These patients would walk 10 hrs a day if their very enthusiastic director, asked them to. They will do whatever it takes to have a chance of improving. From what I observed, there is much improvement happening in Kunming.

    That morning we were told a 10 year old girl who had lost her leg in the earthquake was being brought to the hospital. Because of her positive attitude and beaming smile, she had become a nation symbol of hope. The military leaders of the hospital were present, as well as the media. I was honored to meet her. She said a few words to me in English, a very special moment.

    The rest of the day was spent discussing/debating the possible protocols for US Clinical Trials. This was very interesting and I learned a lot.

    Tue- We watched about 25 patients playing around in the pool. It brought me back to the days I was a Shepherd and enjoyed the warm pool. They also had a hot tub filled with herbs the patients soaked in. I was surprised by how many patients were walking around in the pool “normally”. At first I thought they were PT Aids, but was told they were patients.

    We were next brought to the ICU, which had 5 patients, including 3 that were operated on Monday. This room brought back some wonderful memories, as I’m sure you can imagine. Those patients I saw unconscious in the ICU are probably up walking now. To me this is incredible, to them, routine.

    That night we all met for dinner to mark the end of our trip to China. It was really more of a celebration. From the second we sat down, the food didn’t stop coming. All sorts of dishes, everything I tried was excellent. I must admit, I passed on the hundred year old egg though. The food isn’t the only thing that didn’t stop coming. For as long as we were there, the toasts never stopped. A toast to Neurosurgeons, to China, to the US, to China and the US, person-to-person toasts, on and on, for hours. It was quite an experience, something I will never forget.

    The patients I saw in the ICU may very likely be up walking today, giving them the best chance of recovering. Soon, Lithium and Cord Blood will be added to the mix. This very special Hospital in the South of China is on its way to finding a cure for paralysis. We need to join them. I think most of us who visited felt like the baton was passed to us and it is our turn to run with it. They have found a way to fund their trials, and we must do the same. Many people like Dr Young have worked very hard and have dedicated their lives to bettering ours. Now is the time to thank them by coming together and raising the funds to make these clinical trials happen NOW.

    Lets Do This!

    Email me if you want to help- jimbenn@rci.rutgers.edu
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  3. #33
    Thanks for filling us in on this program. I am so glad to hear something so promising.

  4. #34
    Thank you Jim. Those pictures were inspirational. I don't think a hospital/rehab. center like that exists in the US.

  5. #35
    Quote Originally Posted by paolocipolla View Post
    Wise, do the patient recive any therapy like metilprednisolone before myelotomy?
    As I understand myelotomy is performed many days after injury. What about if the patient needs stabilization surgery? Do they wait untill they perform the myelotomy?

    Thanks

    Paolo
    Paolo,

    In Kunming, they do the stabilization and the intradural decompression surgery at the same time. They usually do the surgery within a day or two after admission to the hospital. At the present, they are not giving methylprednisolone before the decompression. However, I have recommended to them and they are considering randomizing a group of their patients to methylprednisolone versus placebo treatment just before the intradural decompression.

    Wise.

  6. #36
    Quote Originally Posted by antiquity View Post
    Thank you Jim. Those pictures were inspirational. I don't think a hospital/rehab. center like that exists in the US.
    Here is a picture of the whole group with Jim up front in Kunming.

  7. #37
    Doctor Young, it sounds like research is moving on at speed, im a T10, 30 years + complete what would you say are the hopes for paras like myself? i know its a wide oen question to ask you at this stage in research and i understand that new acute injuries will see the most improvement, just some bladder function would be great.Any hope?

  8. #38
    OMG was that good to read! Lately I've been working on marketing Working 2 Walk, doing my research, looking for groups of cure-minded paralyzed people. I've done this for years but yesterday was feeling discouraged, because I was feeling like people have regressed this past year, it feels like when we first started.

    The economy isn't helping. It's hard to get enthused about even the greatest cure advocacy events if you don't know where your next wheelchair is coming from.

    Another thing that had me down, the schedules for the Abilities Expos were so discouraging for a cure advocate. NOT ONE SPEAKER is seriously promoting cure, or cure advocacy, unless you count this as a positive thing..."Cure-Hope, Hype and Cure Tourism". There are some workshops scheduled that will be important, on topics like sexuality, exercise, all the crucial things we need to know. But cure research isn't even a thing people care about, if you go by the topics under discussion.

    Maybe that Cure speech I mentioned will be inspirational, and about the legitimate basis for hope for a cure and why we need to push it in the U.S, but the title gave me an ominous feeling. I hope I'm wrong but I'm afraid it will be more about how hoping for progress leaves us as targets for hype. As though we cure-mongers are crazy and delusional. I was used to feeling that way 5 years ago but thought we'd come further than this. Suddenly I have this feeling we're ahead of our time again. I can't imagine how Wise has felt all this time!

    I read what you wrote, and thought maybe cure tourism isn't all bad, if people use some judgment and don't make emotional decisions. What if we just went to China for the killer PT, for instance? It sounds like there is a lot we could learn from the Chinese approach to sci. When I was in rehab, I never saw one single person on the treadmill. I got in trouble for standing myself up in the pool, and had to argue for 2 weeks to get to use the standing frame.

    I wish you would give a speech at the Abilities Expo... a topic like Cure: Hope is a Good Thing, Dammit.

    Another example of why I was feeling disheartened: The Expos all have "Ambassadors", basically attractive young disabled people signed up as press liaisons (or that's how I interpreted it.) When I read their bios, out of 16 or so Ambassadors, ONE expressed an interest in cure research! There were lots of athletes and Miss Wheelchair America participants but nary a cure advocate to be found, just one guy (amazing guy, veteran and athlete, injured in line of duty) that said one of his hobbies is tracking cure research. Thank goodness for him!

    And thank goodness you posted all this fascinating stuff. If you can take your wheelchair to Hong Kong, and Wise can fly back and forth 10 times a year, I suppose I can promote a darned good cure event.

    Those Expos should be a marketing gold mine for us cure-mongers, an obvious place to reach the maximum number of paralyzed folks at one time, in one specific region. Apparently they ARE a gold mine, but only if you sell catheters LOL.

    One more complaint-the Care vs. Cure division needs to END. I wish I could convey to the Care advocates that I would never ever undermine them, because I am fully aware of what they've accomplished and how much of my quality of life can be tracked directly to their ongoing efforts. ADAPT chained themselves to the White House gates this week; in no way are they irrelevant in today's world. They kick ass, and I wish I could work with them instead of being perceived as an adversary.

    That's yet another lesson we could learn from the Chinese, that there is strength in numbers. Thanks for the reports and all the food for thought!

  9. #39
    Quote Originally Posted by rushy111 View Post
    Doctor Young, it sounds like research is moving on at speed, im a T10, 30 years + complete what would you say are the hopes for paras like myself? i know its a wide oen question to ask you at this stage in research and i understand that new acute injuries will see the most improvement, just some bladder function would be great.Any hope?
    rushy,

    I don't know but I am hopeful enough that we am not excluding people who are 30 years post-injury from the study. In our main nascinet trial, we are probably going to go the range from 18 to 64 (originally, I was thinking of 16 to 60). We are planning separate phase 2 trials for kids 8-18 and older people from 64 to 80. We are limiting the injury levels to C5 and T10 inclusive.

    Wise.

  10. #40
    Quote Originally Posted by betheny View Post
    OMG was that good to read! Lately I've been working on marketing Working 2 Walk, doing my research, looking for groups of cure-minded paralyzed people. I've done this for years but yesterday was feeling discouraged, because I was feeling like people have regressed this past year, it feels like when we first started.

    The economy isn't helping. It's hard to get enthused about even the greatest cure advocacy events if you don't know where your next wheelchair is coming from.

    Another thing that had me down, the schedules for the Abilities Expos were so discouraging for a cure advocate. NOT ONE SPEAKER is seriously promoting cure, or cure advocacy, unless you count this as a positive thing..."Cure-Hope, Hype and Cure Tourism". There are some workshops scheduled that will be important, on topics like sexuality, exercise, all the crucial things we need to know. But cure research isn't even a thing people care about, if you go by the topics under discussion.

    Maybe that Cure speech I mentioned will be inspirational, and about the legitimate basis for hope for a cure and why we need to push it in the U.S, but the title gave me an ominous feeling. I hope I'm wrong but I'm afraid it will be more about how hoping for progress leaves us as targets for hype. As though we cure-mongers are crazy and delusional. I was used to feeling that way 5 years ago but thought we'd come further than this. Suddenly I have this feeling we're ahead of our time again. I can't imagine how Wise has felt all this time!

    I read what you wrote, and thought maybe cure tourism isn't all bad, if people use some judgment and don't make emotional decisions. What if we just went to China for the killer PT, for instance? It sounds like there is a lot we could learn from the Chinese approach to sci. When I was in rehab, I never saw one single person on the treadmill. I got in trouble for standing myself up in the pool, and had to argue for 2 weeks to get to use the standing frame.

    I wish you would give a speech at the Abilities Expo... a topic like Cure: Hope is a Good Thing, Dammit.

    Another example of why I was feeling disheartened: The Expos all have "Ambassadors", basically attractive young disabled people signed up as press liaisons (or that's how I interpreted it.) When I read their bios, out of 16 or so Ambassadors, ONE expressed an interest in cure research! There were lots of athletes and Miss Wheelchair America participants but nary a cure advocate to be found, just one guy (amazing guy, veteran and athlete, injured in line of duty) that said one of his hobbies is tracking cure research. Thank goodness for him!

    And thank goodness you posted all this fascinating stuff. If you can take your wheelchair to Hong Kong, and Wise can fly back and forth 10 times a year, I suppose I can promote a darned good cure event.

    Those Expos should be a marketing gold mine for us cure-mongers, an obvious place to reach the maximum number of paralyzed folks at one time, in one specific region. Apparently they ARE a gold mine, but only if you sell catheters LOL.

    One more complaint-the Care vs. Cure division needs to END. I wish I could convey to the Care advocates that I would never ever undermine them, because I am fully aware of what they've accomplished and how much of my quality of life can be tracked directly to their ongoing efforts. ADAPT chained themselves to the White House gates this week; in no way are they irrelevant in today's world. They kick ass, and I wish I could work with them instead of being perceived as an adversary.

    That's yet another lesson we could learn from the Chinese, that there is strength in numbers. Thanks for the reports and all the food for thought!
    Betheny,

    Thanks for such a thoughtful post. While I know that you are addressing this to Jim, let me comment on certain parts of it. Starting last November, I decided to spend more time on Facebook where I can have more direct access to people with spinal cord injury and have sought to "friend" many people with spinal cord injury without using the CareCure list at all. This has brought me into contact with many people with spinal cord injury who are not CareCure members. Many probably attend the Abilities Expo and most don't know about CareCure.

    Many people are blithely unaware of the clinical trials or that there are therapies that restore function in animals. While CareCure is a great community, we have over 20,000 members, and over 200,000 people visit the site every month, we are only getting the tip of the iceberg. Probably a vast majority of Americans with spinal cord injury don't know much about spinal cord injury research. So, your finding that only one of sixteen "spokespeople" for spinal cord injury community is a research advocate is a pretty good sampling of the community.

    I find it interesting that many of the 1552 people who signed up for nascinet.org group on Facebook (Source) did not know that nascinet is actually planning and will be doing clinical trials. They thought it was just a group advocating for clinical trials. I also have trouble convincing people that I am not pushing a particular therapy and that I am really pushing for a network that happens to have chosen umbilical cord blood and lithium as the first treatment that it is testing.

    The concept of having clinical trials to test therapies is still foreign to many people with spinal cord injury. Some regard it as an opportunity to get free therapy. Others look upon it as something that must be done for the FDA. Few actually understand that the most important function of clinical trials is to provide credible data that a therapy works or does not work. Only when we have this data do people have the information to decide whether they want to partake in particular therapy. If something does not work, we need to know and not waste our time and resources pursuing that treatment.

    The worst consequence of people going to China for medical tourism is the waste of time and money. Thousands of people have gone there with heart in hand and money in pocket, to gamble on therapies. What a waste. We need to know when a treatment does not work or, if it works, what is the likelihood of success and under what circumstances. Before people put their bodies and money on the table, they need to have more information. That is what clinical trials are for.

    This is something that benefits everybody in the spinal cord injury community. We should not have just one network. We need multiple networks, testing 10% or more of the people in the spinal cord injury community with the most promising therapies that are coming out of the laboratory. Only in this fashion will we be able to advance and have progress in the field.

    Wise.

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