ChinaSCINet Update

[jferg]

Thank you Wise, do you think sensory to will work this way also, please forgive me for all my questions I am a big supporter of regeneration I believe our bodies can do some amazing things be interesting to see what develops in these patients. And please don't stop sharing your trial based on questions raised, I believe everyone was very excited for the results and of course to get this moving forward.

[Wise Young]

Thank you Wise, do you think sensory to will work this way also, please forgive me for all my questions I am a big supporter of regeneration I believe our bodies can do some amazing things be interesting to see what develops in these patients. And please don't stop sharing your trial based on questions raised, I believe everyone was very excited for the results and of course to get this moving forward.

Dear jferg,

It has come to my attention that my remark about not presenting the data again until the paper is published has concerned some people. Let me reassure you and others that I will not stop sharing information and ideas with the community. It is just the teacher in me speaking. Especially at this time of the year, I am spending a great deal of my time teaching many students and am always concerned about making sure that all the students understand what I am saying.

Both the data and the concepts that are resulting from our clinical trials are not only complex but unexpected. We did not by any stretch of our imagination think that so many patients would be walking after complete spinal cord injury. Of course, the first reaction of most people is that this is not "walking". Well, as you can see, it is not robocop walking. The people are initiating the walking themselves and using the walking to get around the house and some prefer walking to their wheelchairs for distances up to 100 meters.

Yet, when they are lying down, they cannot move their legs. Again, this is usually greeted with disbelief. How is it possible that people cannot move their legs when lying down but they can walk? And, what about sensation? How can people walk without sensation? Our results indicate that it is possible for people to initiate walking without being able to feel their legs.

The standard neurological examination to assess voluntary strength and sensation seeks to isolate each muscle group and ask the patient to move the muscle group or to say whether (s)he can feel light touch or pinprick (pain) in each dermatome. The examination essentially asking the brain to send a message to a particular muscle or a skin patch to send a message to the brain.

It is tantamount to making a phone call from Miami to Boston or Boston to Miami. As I have explained, the telephone numbers have been scrambled up when you have regeneration. You have to learn a new phone book. That learning will not come without a lot of exercise. More important, you need to have some way of communicating the new phone numbers to the person.

That is the issue that we have been focusing our attention on for the upcoming clinical trial. Because we will be treating 240 people with chronic complete spinal cord injury and expect 75% or more of the subjects to walk or to recover bowel and bladder function, we have an unprecedented opportunity to figure out how to improve that recovery.

Whether sensory will recover with training or not, I am not sure. I do know that people will recover patches of sensation many years after injury. How it occurs is not clear to me. Somehow, the brain learns to recognize incoming signals as coming from a particular place and meaning a particular type of sensation.

Wise.

[tompocket]

Hi, does anyone have any information on what the Patient's spasms are like? Thanks.

[lunasicc42]

Dear jferg,

It has come to my attention that my remark about not presenting the data again until the paper is published has concerned some people. Let me reassure you and others that I will not be stopping sharing information and ideas with the community. It is just the teacher in me speaking. Especially at this time of the year, I am spending a great deal of my time teaching many students and am always concerned about making sure that all the students understand what I am saying.

Both the data and the concepts that are resulting from our clinical trials are not only complex but unexpected. We did not by any stretch of our imagination think that so many patients would be walking after complete spinal cord injury. Of course, the first reaction of most people is that this is not "walking". Well, as you can see, it is not robocop walking. The people are initiating the walking themselves and using the walking to get around the house and some prefer walking to their wheelchairs for distances up to 100 meters.

Yet, when they are lying down, they cannot move their legs. Again, this is usually greeted with disbelief. How is it possible that people cannot move their legs when lying down but they can walk? And, what about sensation? How can people walk without sensation? Our results indicate that it is possible for people to initiate walking without being able to feel their legs.

The standard neurological examination to assess voluntary strength and sensation seeks to isolate each muscle group and ask the patient to move the muscle group or to say whether (s)he can feel light touch or pinprick (pain) in each dermatome. The examination essentially asking the brain to send a message to a particular muscle or a skin patch to send a message to the brain.

It is tantamount to making a phone call from Miami to Boston or Boston to Miami. As I have explained, the telephone numbers have been scrambled up when you have regeneration. You have to learn a new phone book. That learning will not come without a lot of exercise. More important, you need to have some way of communicating the new phone numbers to the person.

That is the issue that we have been focusing our attention on for the upcoming clinical trial. Because we will be treating 240 people with chronic complete spinal cord injury and expect 75% or more of the subjects to walk or to recover bowel and bladder function, we have an unprecedented opportunity to figure out how to improve that recovery.

Whether sensory will recover with training or not, I am not sure. I do know that people will recover patches of sensation many years after injury. How it occurs is not clear to me. Somehow, the brain learns to recognize incoming signals as coming from a particular place and meaning a particular type of sensation.

Wise.

Wise, here you allude to bowel and bladder, anything about sexual function?

[Wise Young]

Hi, does anyone have any information on what the Patient's spasms are like? Thanks.

We did not measure spasms but we did measure spasticity with the modified Ashworth scale and there was no significant change. Wise.

[Wise Young]

Wise, here you allude to bowel and bladder, anything about sexual function?

We did not ask and therefore do not know. In the upcoming trial, we will ask. I am also planning to bring as many of the patients back as possible for long term followup and we will ask then. Wise.

[Mike Honcho]

Extremely exciting! Thanks for your hard work, Wise, and for sharing it with us.

Have quadriplegics regained any use of their hands?

[lunasicc42]

Extremely exciting! Thanks for your hard work, Wise, and for sharing it with us.

Have quadriplegics regained any use of their hands?

Same thoughts here

[lunasicc42]

We did not ask and therefore do not know. In the upcoming trial, we will ask. I am also planning to bring as many of the patients back as possible for long term followup and we will ask then. Wise.

so will you have any info on that in time for w2w?

[Wise Young]

so will you have any info on that in time for w2w?

No.

[Wise Young]

Extremely exciting! Thanks for your hard work, Wise, and for sharing it with us.

Have quadriplegics regained any use of their hands?

While several subjects recovered some hand function, it was nothing like the walking. I think that it is because we did not exercise their hands like we did their walking. I will discuss at the meeting how we plan to address this issue in the upcoming phase III trial. Wise.

[jferg]

Thank you Wise, and I am sure it's frustrating to explain so much to such varied audiences your presentation was excellent if you presented it based off your knowledge level we probably all fell asleep as we wouldn't of understood any of it. Thank you for sharing and your continued hard work..

[taymas]

So is it likely that the epi stim therapy will be incorporated with the Phase III ChinaSCInet trials? this is so exciting?! It's amazing to think that the "cure" or atleast an effective therapy is already here - we just need to make sure it's safe and viable... Red tape it seems.

In the "Rethinking SCI" video, if I remember correctly, the epi stims will be incorporated together with Phase III right? I'm jumping up and down like a kid in a candy store!

Regards

[Barrington314mx]

I thought they were talking about using estim, like the little units with the pads on them. Like the TENS units. But how cool would it be if Dr. Young and Dr. Harkema joined forces and the trial was the umbilical cord blood cells and the implanted estim device. Maybe that is whats happening, idk.

[Jim]

I thought they were talking about using estim, like the little units with the pads on them. Like the TENS units. But how cool would it be if Dr. Young and Dr. Harkema joined forces and the trial was the umbilical cord blood cells and the implanted estim device. Maybe that is whats happening, idk.

The plan is to use estim on hands/feet of some patients.