ChinaSCINet Update

[tomsonite]

Tomsonite,
I totally agree - it does "work" and has it's results. But could you elaborate on reflex vs motor control? So is it fair to say they are walking - but it's merely training their reflexes, and it is NOT voluntary on an individual muscle basis? You probably have a for better understanding than me.

For example, does this mean that if I had this therapy, I wouldn't be able to move my legs around in my wheelchair, like lift my leg to wear a sock? As Jim said COMPLETES are walking with or without aid. Although it would be better than nothing, my expectations were a tad high, dreaming of betting back on my motorcycle can

Can Jim or Wise also comment to clear this up?

Cheers

Taymas, when somebody walks, they don't voluntarily think to themselves to execute every movement involved. That is to say, when I walk, I don't think to myself "ok, I have to fire my glute, quad, and anterior tibialis on my stance leg, now I have to fire my anterior tib and gluteus while isometrically contracting my quadricep with a co-contraction of the hamstring to stabilize the knee while I brace my trunk musculature and fire my hip flexors and hamstrings as I propel my foot off the ground on my swing leg with my gastrocnemius muscle. Now I must extend my hip with my glutes on my stance leg while isometrically firing the hamstring on my swing leg..." The amount of individual muscles and movements involved in walking is absolutely nauseating. If every person had to think about every movement involved in every step they took, it would take hours to walk from the kitchen to the living room.

Instead, our brain simply says "walk over there" to the body. Pre-programmed reflexes in the spinal cord that every human is born with take care of the rest. Essentially, when someone wants to walk somewhere, all the brain does is turn on reflexes based in the spinal cord. That is what makes walking "involuntary". When I walk, I voluntarily decide that I want, but involuntary reflexes in my spinal cord determine how I walk.

It appears (and I haven't seen any data myself, but have been to a few of Wise's open houses) that the therapy that ChinaSCINet is testing is somehow capable of reconnecting the brain to these involuntary reflex centers in the spinal cord (the Central Pattern Generators). Thus, when one of the subjects is up in a rolling walker, they decide to take a step - then the muscles that produce that step fire "involuntarily", resulting in the leg getting pulled forward.

The other thing about walking is that it is not just dependent on the brain deciding to walk. In order for those involuntary reflexes to fire, there needs to be a LOT of sensory input from the body and the environment. There has to be weight bearing on the joints of the lower body, different limbs must be in different positions, etc. A combination of the brain deciding to walk, plus the body being in the correct position/alignment is what makes the body capable of stepping. It is actually completely different than what is involved with you trying to lift your leg up to put your socks on.

Hopefully you actually understand what I wrote. If you are simply sitting cross-eyed at your computer I apologize

[Eric.S]

its seems to be pretty simple what is being said. The body looks at walking as a single function and somehow Dr. Wise's therapy is able to restore this function but the not the single movement function for something like kicking or lifting the leg. I wonder why the complex multi component function would get restored before the simple functions?

it must be weird to walk uncontrollably..

[Barrington314mx]

This video was recorded before bowel/bladder improvement.

Enjoy your vacation while you are on it. But when you get time, can this be expanded on please if you can be more specific?

[paolocipolla]

[QUOTE=Tbone57;1743197]

Wise presented preliminary results almost two years ago, my understanding is that it does not work. See this video: https://www.youtube.com/watch?v=8VsK8lz6vZ8
Pay attention at minute 37:50

I hope at W2W more details will be presented.

Your basing this statement on a 30 second portion of the video. Did you watch the whole video from beginning to finish or just the part where Wise says he believes the strands may still be growing and haven't reached the target yet. I recommend you watch the whole thing and try to glean some more information from it, thats your assignment. Report back with some good news or Santa is not going to visit you this year.

I have watched the whole presentation first when it was on live streaming together with the other presentations, then I have rewatched it carefully more than once to make sure I didn't miss somenthing important.

Sorry I can't do better than that.

Paolo

[paolocipolla]

paolocipolla says:
Wise presented preliminary results almost two years ago, my understanding is that it does not work.

Paolo, what do you base the above statement on? How can you make this statement if you haven't seen the data?[/QUOTE]

Jim,

Wise in his presentation said there is no significant change in motor and sensory score. That for me means the treatment does not work,

Paolo

[tomsonite]

paolocipolla says:
Wise presented preliminary results almost two years ago, my understanding is that it does not work.

Paolo, what do you base the above statement on? How can you make this statement if you haven't seen the data?

Jim,

Wise in his presentation said there in no significant change in motor and sensory score. That for me means the treatment does not work,

Paolo[/QUOTE]

Was the purpose of the therapy to ever get changes in motor and sensory scores? I always thought return of walking was the purpose. What the results mean "for you" is completely irrelevant if the results you're looking at have nothing to do with the purpose of the therapy.

[khmorgan]

May I offer yet another uneducated opinion?

Dr. Young has said many times that with only 10% of the spinal cord functioning, a person's walking would appear normal to an occasional observer. I think this means that we aren't talking a binary (good or bad) case here. If you have 15% of your cord intact, you will appear very normal. However, 5% and you will be paralyzed. Who knows about 9%?

Now, what if you have that 5%? It is still connected to its targets, but there aren't enough functioning axions to control enough muscles to allow you to move. Also, perhaps the remaining axions have become unresponsive after years of being ineffective.

This may be why the electrical stimulation works, i.e. it simply amplifies the signals sent by the 5%.

Getting back to the ChinaSCINet trials, maybe the treatment is merely activating the intact 5% of the axions, or maybe it is increasing the number of active axions to 10% or more. I'm sure they are trying to figure that out. The exciting part is that whatever they are doing seems to be making a difference. I applaud their efforts and don't condemn them because they have unanswered questions or failed to cure animals first.

[Eric.S]

May I offer yet another uneducated opinion?

I applaud their efforts and don't condemn them because they have unanswered questions or failed to cure animals first.

people are actually criticizing them for not curing animals first? my God!! is this process not strenuous enough? anything they can skip i personally appreciate. why would anyone advocate wasting more time and money?

[Nowhere Man]

people are actually criticizing them for not curing animals first? my God!! is this process not strenuous enough? anything they can skip i personally appreciate. why would anyone advocate wasting more time and money?

By your logic, they should have just skipped the human clinical trials too and immediately sold the UCB therapy to any customer. It would have saved at least 5 years and millions of dollars. Also, animal testing saves time and money in the larger scheme of things.

[khmorgan]

By your logic, they should have just skipped the human clinical trials too and immediately sold the UCB therapy to any customer. It would have saved at least 5 years and millions of dollars. Also, animal testing saves time and money in the larger scheme of things.

Right! Of course, it costs far more to exercise a mouse (move his limbs) 6 hours at day 6 days a week, than it does to have a patient's family do it. But, I'm sure your knowledge and experience is superior to ours.

Oh yes, Dr. Young also mentioned that in China, you pretty much walk or you die. They don't have Medicaid, SSD, etc. that act as a safety net for injured people. So, you think it would be better to let people die and cure mice. Interesting.

As for bringing the Phase 3 trials to the US, if the treatment has been proven to be safe and effective in China (Phase 1 & 2 trials), why not bring it to the US? Maybe we can deprive a few people the enjoyment of being in a chair.

Sorry for the sarcasm. I just get tired of laypeople constantly questioning the actions of dedicated, highly trained professionals who are just trying to save people's lives.

[paolocipolla]

Jim,

Wise in his presentation said there in no significant change in motor and sensory score. That for me means the treatment does not work,

Paolo

Was the purpose of the therapy to ever get changes in motor and sensory scores? I always thought return of walking was the purpose. What the results mean "for you" is completely irrelevant if the results you're looking at have nothing to do with the purpose of the therapy.[/QUOTE]


Tom,

time will tell if non voluntary steppig is a relevant recovery. I don't think so.

Paolo

[#LHB#]

Here's an idea. Go find one of those people walking with a walker and ask them if they would rather do that or be confined to a chair like before. I bet you know the answer. It may not be cure you want
but its a hell of a lot better than what a lot of us have now.

[void]

May I offer yet another uneducated opinion?

Dr. Young has said many times that with only 10% of the spinal cord functioning, a person's walking would appear normal to an occasional observer. I think this means that we aren't talking a binary (good or bad) case here. If you have 15% of your cord intact, you will appear very normal. However, 5% and you will be paralyzed. Who knows about 9%?

Now, what if you have that 5%? It is still connected to its targets, but there aren't enough functioning axions to control enough muscles to allow you to move. Also, perhaps the remaining axions have become unresponsive after years of being ineffective.

This may be why the electrical stimulation works, i.e. it simply amplifies the signals sent by the 5%.

Getting back to the ChinaSCINet trials, maybe the treatment is merely activating the intact 5% of the axions, or maybe it is increasing the number of active axions to 10% or more. I'm sure they are trying to figure that out. The exciting part is that whatever they are doing seems to be making a difference. I applaud their efforts and don't condemn them because they have unanswered questions or failed to cure animals first.

Right! Of course, it costs far more to exercise a mouse (move his limbs) 6 hours at day 6 days a week, than it does to have a patient's family do it. But, I'm sure your knowledge and experience is superior to ours.

Oh yes, Dr. Young also mentioned that in China, you pretty much walk or you die. They don't have Medicaid, SSD, etc. that act as a safety net for injured people. So, you think it would be better to let people die and cure mice. Interesting.

As for bringing the Phase 3 trials to the US, if the treatment has been proven to be safe and effective in China (Phase 1 & 2 trials), why not bring it to the US? Maybe we can deprive a few people the enjoyment of being in a chair.

Sorry for the sarcasm. I just get tired of laypeople constantly questioning the actions of dedicated, highly trained professionals who are just trying to save people's lives.

You are right, these are uneducated opinions.

[tomsonite]

Tom,

time will tell if non voluntary steppig is a relevant recovery. I don't think so.

Paolo

I think the type of walking that most people gained (rolling walker) is not practical for real world use. However, two people from the Phase II trial are able to stand and walk independently with a 4 point walker. I have seen the video of the walking, and have seen the video of the motor score exam that showed no changes. The man's walking is practical, despite his lack of voluntary motor ability.

The practical application of the walking yielded by this trial is debateable. But to say the therapy doesn't work at all is simply not true. Clear changes have been brought by it, whether they are significant or not.

[taymas]

Hey Tomsonite, thanks for the earlier explanation, I'm finding out more about it. To me it's a success, or at least a foundation to build upon. Of course we're looking forward to that publication to see the changes in bladder/bowels etc, that Jim has mentioned. I've also looked at the Central Pattern Regulator, and have only scratched the surface. I just have this particular question - would the participants be able to chose when to walk, speed they walk and direction?

I'm sure the upper body can be used to change direction, using some sort of walker. It would be funny if I'm walking into a wall, and I have the slowest "NOOOOOO!" moment ever, of the impending doom

Jokes aside, whether there are positive or negative results, I feel I need to support the trial as it deals with chronic SCI. I sure would love to be walking, even if I walk into a wall - and not to mention the impending results. Fewer chance of pressure sores, legs that aren't as skinny, lesser impact of osteoporosis, and a chance to walk alongside my parents, sisters, future children, and wife. No matter how wonky or functional.

Of course I would be cheeky to ask if I can get back on my bike but of course we need to wait and see how it pans out. To me (IMO) the results are POSITIVE. I would love for someone to tell of ANY other therapy/trial that has led to stepping and walking so close to a non SCI person... Hope I didn't shoot myself in the foot there don't pull out a therapy that has

Lots of love.