ChinaSCINet Update

[Jim]

Electrical stim is not part of this trial. It may be part of a future trial because 6-6-6 is too expensive and time consuming.

crispy, I would first have the dr/rehab people read the attached summary and published paper about the trial. If they are interested I can arrange for them to speak with one of our professors.

This is the trial on ClinicalTrials.gov- https://clinicaltrials.gov/ct2/show/NCT03979742

The URL of the attached paper- https://journals.sagepub.com/doi/10....6368916X691411
Our website- https://keck.rutgers.edu/

[crispy1981]

I don't think electrical stim was part of it but Jim could give you more details on that. It might be something they are looking into and weighing the options on, but I don't remember seeing it as part of the original trials overseas.

During Wise Young's open houses he did mention some ideas they were throwing around to help complement the exercise in America. Things like vibration plates. But I don't know if they are still expecting to use any of those things. My guess is that they aren't.

It is great to have a place like that by you. I wish I had something by me. There is nothing. In fact I have one of the best research facilities / colleges 10 minutes from me, with all the equipment to run a great facility and help people and I can't get them to do anything. It just sits there. All those funds to get the equipment and in two years I think I was there a total of 4 times... that type of thing is enough to drive you mad. If they would let me strap on this stim and walk on the treadmill for a few hours a day, I would probably be running the New York Marathon in a year LOL.

Mit, are you saying there is rehab clinic near you and you cannot use it? Why would that be? Also, yes it does appear 'stim' is not part of the 6,6,6 so perhaps the ekso and even a standing machine would be good for those of us wanting to get a head start while waiting for the trial etc. Also, looks like the Christopher Reeves foundation is doing locomotor training...i wonder how that is going?

[Mitchitsu]

It's not a Physical Therapy Center. It's a research facility part of Stony Brook University. They have an entire building dedicated to this research. The entire set up with doctors in charge, therapists, research assistants. They have all the equipment you could ever hope for. And I've literally been waiting for the same trial to start for about 2 years which is a locomotor training with stimulation.

The excuse now is they are trying to hire helpers which is taking months and months. It is frustrating beyond measure. I mean I can understand all the crazy delays with something like what they are doing here. Requiring stem cells and surgeries and Facilities to handle people for 6 hours a day 6 days a week. But this is like one hour a day 3 days a week on a treadmill and they can't get it together...

How about this for a study. I Live 5 minutes away. Give me 6 months on your equipment and let's see where I'm at. Then you can write about it in your silly journals.

Sorry just venting

I think a standing machine and ekso would be a huge place to start until you can get rolling on either this trial or another. It is so important to keep all that stuff moving and strong so you are ready to roll. I know it's difficult to keep the motivation up to do it. With me it comes and goes.

If I had a project walk or something like that around me I would be there everyday but there is nothing so I utilize a treadmill in my house as much as possible.

[crispy1981]

Electrical stim is not part of this trial. It may be part of a future trial because 6-6-6 is too expensive and time consuming.

crispy, I would first have the dr/rehab people read the attached summary and published paper about the trial. If they are interested I can arrange for them to speak with one of our professors.

This is the trial on ClinicalTrials.gov- https://clinicaltrials.gov/ct2/show/NCT03979742

The URL of the attached paper- https://journals.sagepub.com/doi/10....6368916X691411
Our website- https://keck.rutgers.edu/

Thanks for all your efforts with this initiative Jim and thanks for these links. Perhaps i'll find a nurse that can present this to the Rehab Centers doctor(s).

[crispy1981]

It's not a Physical Therapy Center. It's a research facility part of Stony Brook University. They have an entire building dedicated to this research. The entire set up with doctors in charge, therapists, research assistants. They have all the equipment you could ever hope for. And I've literally been waiting for the same trial to start for about 2 years which is a locomotor training with stimulation.

The excuse now is they are trying to hire helpers which is taking months and months. It is frustrating beyond measure. I mean I can understand all the crazy delays with something like what they are doing here. Requiring stem cells and surgeries and Facilities to handle people for 6 hours a day 6 days a week. But this is like one hour a day 3 days a week on a treadmill and they can't get it together...

How about this for a study. I Live 5 minutes away. Give me 6 months on your equipment and let's see where I'm at. Then you can write about it in your silly journals.

Sorry just venting

I think a standing machine and ekso would be a huge place to start until you can get rolling on either this trial or another. It is so important to keep all that stuff moving and strong so you are ready to roll. I know it's difficult to keep the motivation up to do it. With me it comes and goes.

If I had a project walk or something like that around me I would be there everyday but there is nothing so I utilize a treadmill in my house as much as possible.

Mit, how do you use a treadmill? You must be incomplete SCi?

If you have a treadmill i wonder if you could hire your own ppl to do 6,6,6? Are there details about how the locomoter training is done that requires a medical background etc? I have an EZ Stander at home but i don't know if that qualifies for locomoter training otherwise those who own them might have reported similar results the trials have?

[Mitchitsu]

Yes, I apologize for any confusion. I am incomplete and can ambulate fairly well (although very slowly). So unfortunately I do not qualify for Dr. Young's study or most studies like it.

As far as the 6-6-6, in theory I have people around to do it.
But after about 30 minutes of walking I can't move for the rest of the day I'm trying to build up by doing multiple times a day but it is not easy... after 1 session I feel like I was hit by a train

The actual study itself is going to have a set of procedures. From what I can tell of Jim's past posts as well as Dr Young's open houses, there will be a set way to do things.
Starting with getting people up and standing and then to assisted steps. Helping lockout the knees and trying to get people to eventually take those steps on their own. Remember many of the people in the study have not done this in so long that there will need to be a period of time just to get people moving at all.

You have to understand that from what has been done so far it is difficult to say what is having the most success. Is it the stem cells? Is it the very intensive physical therapy? Or is it a combination of both? Remember originally, subjects that only received stem cells but did not receive intense physical therapy did not have significance gains.

Well what if subjects received this intense physical therapy without the stem cells? This study has to try answering that question.

There is good reason to be optimistic because after so many years of complete injury, people increased their Asia level. That is huge. But there is also reason to be pessimistic because even the people that benefited did not see any benefit in volitional movement. That is a major quality-of-life problem.

It's very sad because if these doctors and scientists had access to the money needed and very fast regulatory approval to get studies done, they would probably be much closer to improving people's lives already. But how much could you really do when it takes 5 years to get 1 phase of a study done? It is disheartening. But moving forward at a snail's pace is better than not moving forward at all I guess.

In my humble opinion, significant gains that equal large quality of life improvements for people are going to come from a combination of everything. Stem cells, intense therapy, stimulation, Etc. If a study like this can get people from Asia A to Asia C, Maybe intense exercise for the next two years along with transcutaneous stimulation Etc can push them over the edge and closer to the life they had before the injury than they ever thought possible. Wouldn't that be nice?

[crispy1981]

Yes, I apologize for any confusion. I am incomplete and can ambulate fairly well (although very slowly). So unfortunately I do not qualify for Dr. Young's study or most studies like it.

As far as the 6-6-6, in theory I have people around to do it.
But after about 30 minutes of walking I can't move for the rest of the day I'm trying to build up by doing multiple times a day but it is not easy... after 1 session I feel like I was hit by a train

The actual study itself is going to have a set of procedures. From what I can tell of Jim's past posts as well as Dr Young's open houses, there will be a set way to do things.
Starting with getting people up and standing and then to assisted steps. Helping lockout the knees and trying to get people to eventually take those steps on their own. Remember many of the people in the study have not done this in so long that there will need to be a period of time just to get people moving at all.

You have to understand that from what has been done so far it is difficult to say what is having the most success. Is it the stem cells? Is it the very intensive physical therapy? Or is it a combination of both? Remember originally, subjects that only received stem cells but did not receive intense physical therapy did not have significance gains.

Well what if subjects received this intense physical therapy without the stem cells? This study has to try answering that question.

There is good reason to be optimistic because after so many years of complete injury, people increased their Asia level. That is huge. But there is also reason to be pessimistic because even the people that benefited did not see any benefit in volitional movement. That is a major quality-of-life problem.

It's very sad because if these doctors and scientists had access to the money needed and very fast regulatory approval to get studies done, they would probably be much closer to improving people's lives already. But how much could you really do when it takes 5 years to get 1 phase of a study done? It is disheartening. But moving forward at a snail's pace is better than not moving forward at all I guess.

In my humble opinion, significant gains that equal large quality of life improvements for people are going to come from a combination of everything. Stem cells, intense therapy, stimulation, Etc. If a study like this can get people from Asia A to Asia C, Maybe intense exercise for the next two years along with transcutaneous stimulation Etc can push them over the edge and closer to the life they had before the injury than they ever thought possible. Wouldn't that be nice?

I agree with you that there is a lot of promise with these developments and intesifying the focus with more resources and perhaps combining solutions could achieve immense recovery for us!

I thought the most progress has been achieved from locomotor training? Also, isn't there a study that Wise Young's team has yet to publish/reveal?
https://www.youtube.com/watch?v=fhx1tf9VGiY&t=1290s

[Moe]

This thread's about 10 years old now. How come that Dr. Wise doesn't post anything here anymore? Any new timelines coming up? Anything happening soon?

[Jim]

Hey Moe,

Wise working hard trying to get this trial going, and busy with many, many other things. Fortunately, everyone can attend the Summer Open House in a few weeks-

Every year, on the third Thursday in July, we hold a Special Summer Open House focusing on one of your most pertinent questions! This year we will feature information on the Rifton walkers and demonstrations of people using them for the walking training, plus a live panel to answer your questions. The panel will include both trainers with experience with these walkers and clients who have used them.

The Walking Presentation will be followed by an update on the Keck Center research and the clinical trials from Dr. Wise Young.

The Summer Open House will be Thursday, July 16th, 7-9:00pm (EDT). Save the date now – a webex invitation and link to register will be sent closer to the event.

[crispy1981]

Hey Moe,

Wise working hard trying to get this trial going, and busy with many, many other things. Fortunately, everyone can attend the Summer Open House in a few weeks-

Every year, on the third Thursday in July, we hold a Special Summer Open House focusing on one of your most pertinent questions! This year we will feature information on the Rifton walkers and demonstrations of people using them for the walking training, plus a live panel to answer your questions. The panel will include both trainers with experience with these walkers and clients who have used them.

The Walking Presentation will be followed by an update on the Keck Center research and the clinical trials from Dr. Wise Young.

The Summer Open House will be Thursday, July 16th, 7-9:00pm (EDT). Save the date now – a webex invitation and link to register will be sent closer to the event.

Fantastic!
thanks Jim. I'll be there!

[Moe]

Happy Birthday 'ChinaSCINet Update' thread... you're 10 years old now... It's a shame that Dr. Wise doesn't have time to write here anymore.

[Sparky831]

Happy Birthday 'ChinaSCINet Update' thread... you're 10 years old now... It's a shame that Dr. Wise doesn't have time to write here anymore.

Damn 10 years already. Time goes by so fast!

Still no trial

[Barrington314mx]

Sure does go fast. I'll be 10 years post this Oct. Never thought I'd make it to 10 years without some kind of therapy starting for SCI.