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Thread: a cure ?when and by who?

  1. #111
    Quote Originally Posted by lynnifer View Post
    Interesting. Certainly there must be former trial patients who can inform that sensation has returned. Anyone? Bueller? Bueller?

    When I say e-stim, I mean the new stimulation of the spinal cord, not the muscles themselves. I call that FES.
    I am not aware of any formal trial participants having reported returns of sensation - however, I wouldn't necessarily expect sensory return from the experiments that have been done - remember I said researchers need to do "proper experiments" if we want to see sensory return. All experiments that have been done so far have had the goal of returning movement, and thus focused on exciting areas of the spinal cord that allow for enhancing movement via signals that are still coming from the brain.

    In my opinion - my completely theoretical opinion - if you want to get sensory return, you'd need to flip the stimulation paradigm upside-down. In other words, rather than try to send electrical currents across/down the spinal cord to excite motor neurons in the spinal cord, we'd need to send electrical currents UP the spinal cord, and/or excite the sensory cortex in the brain so that it can more readily receive information from the limbs and skin. To my knowledge, this has not been done, despite the fact that there are a few very simple ways we could try.

    Also, FES affects sensory nerves too It's just that the stimulation paradigms used with FES rarely would elicit any excitation of sensory neurons in the spinal cord that would lead to sensory change. So the best result we ever get from traditional FES is a muscle contraction.

  2. #112
    Quote Originally Posted by lynnifer View Post
    Interesting. Certainly there must be former trial patients who can inform that sensation has returned.
    Totally agree, whenever any research shows results they don't tell the whole picture. There should be a standard set of questions that they should all answer, which include answers to all the things we care about top to bottom, from breathing to hand function to bbs to leg movement and sensation.

    Quote Originally Posted by tomsonite View Post
    I am not aware of any formal trial participants having reported returns of sensation
    How about this:
    "It's incredible just to be able to feel the breeze against my legs on a nice day."
    https://www.reevebigidea.org/rob-story

  3. #113
    Quote Originally Posted by niallel View Post
    How about this:
    "It's incredible just to be able to feel the breeze against my legs on a nice day."
    https://www.reevebigidea.org/rob-story
    And this article:
    http://www.newmobility.com/2016/02/e..._switcher=true

  4. #114
    I stand corrected!

  5. #115
    Senior Member lynnifer's Avatar
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    Andrew Bell (on facebook) went to Thailand and had the stimulator implanted as well as mega loads of physio. He stands every day - even holding weights .. but did not answer when I asked about sensation. He claims he was complete but I doubt it .. unless I am misunderstanding the use of the word complete ... I thought complete was like me - flaccid with no spasms. He was a newish injury and I stated that I'd rather see it on someone 10yrs post .. he said there were quadriplegics 6-7 yrs post.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  6. #116
    Quote Originally Posted by lynnifer View Post
    Interesting. Certainly there must be former trial patients who can inform that sensation has returned. Anyone? Bueller? Bueller?

    When I say e-stim, I mean the new stimulation of the spinal cord, not the muscles themselves. I call that FES.


    I've reached out to many patients from hakerma, invivo and other studies with no luck. None would share any details that we are interested in.

  7. #117
    Senior Member lynnifer's Avatar
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    Certainly they must be made to sign NDA's .. kinda cruel though. To the rest of us. The endpoints of their trials aren't including BBS though as far as I know so hard to quantify data when that's not the premise of the trial ... I guess.

    When everyone was trialing through 4-ap, I was so excited to read that some had returned bladder function. I waited and waited and took it thinking I had a good chance of return as I had Transverse Myelitis, not a spinal break ... I did gain some and am ever so thankful, but it was a tease. I couldn't help but hype myself up and it was disappointing when I didn't get bladder return.

    Dennis was mentioning on Facebook (stemcellsatombombs) that standing really isn't that great if you're going to soil yourself ... gotta agree.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  8. #118
    Quote Originally Posted by lynnifer View Post
    Andrew Bell (on facebook) went to Thailand and had the stimulator implanted as well as mega loads of physio. He stands every day - even holding weights .. but did not answer when I asked about sensation. He claims he was complete but I doubt it .. unless I am misunderstanding the use of the word complete ... I thought complete was like me - flaccid with no spasms. He was a newish injury and I stated that I'd rather see it on someone 10yrs post .. he said there were quadriplegics 6-7 yrs post.
    The term "complete" is used to delineate people who have bowel sensation and function from people who do not...that is it.

    If you have no sensation or motor function of your bowels, you are ASIA A complete. The most famous example is Pat Rummerfeld, who has RUN a marathon in Death Valley, CA - he can run, and his autonomic system can handle running in the desert in California - but because he has no bowel sensation or function, he is ASIA A complete.

    If you have bowel sensation but no motor function, you are sensory incomplete, motor complete.

    Spasms and flaccidity have nothing to do with diagnosing someone as complete/incomplete. Plenty of people with "complete" injuries have spasms, and plenty are flaccid.

    This does get quite confusing, though, because most people understand "complete" as someone with no sensory or motor function below their injury level. It is possible, however, to be diagnosed as "complete with a zone of partial preservation" - for example, no sensation or motor function below your injury, but you can feel pin pricks on the back of your ankles.

    Basic scientists - people who study animals or raw cells in a dish - usually have different meanings for "complete" and "incomplete". To them, a "complete" injury is almost always a full-blown transection, while an "incomplete" injury is any amount of spare tissue still crossing the injury site. This is why a lot of people get confused when trying to talk to basic scientists and clinicians at the same time.

    In Andrew Bell's case, he probably was diagnosed in the clinic as having a "complete" injury, when in fact he actually had an injury that was so severe he was left with no function, but still had some tissue spared at his injury. This is also known as having a "discomplete" spinal cord injury - a term that has been around since the 1980's but is only now starting to become common. It is likely that all subjects that have shown improvements from implanted epidural stimulators so far have been discomplete.

  9. #119
    Senior Member lynnifer's Avatar
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    Thank you so much for that explanation. It does get confusing. The ASIA thing is not used in Canada to my knowledge? I haven't been seen by a physiatrist since my initial paralysis in 1985 and these classifications really didn't exist then.

    I told him he had sparring, but I don't think he got it then.

    I have some hope as last I heard, Harkema was working on job specific software for flaccid people like myself. I've tried to ask a few times but no answer.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  10. #120
    Quote Originally Posted by lynnifer View Post
    Thank you so much for that explanation. It does get confusing. The ASIA thing is not used in Canada to my knowledge? I haven't been seen by a physiatrist since my initial paralysis in 1985 and these classifications really didn't exist then.

    I told him he had sparring, but I don't think he got it then.

    I have some hope as last I heard, Harkema was working on job specific software for flaccid people like myself. I've tried to ask a few times but no answer.
    I'm not positive, but I'm pretty sure the ASIA is the standard in pretty much all developed countries for classifying SCI. It is sometimes called the ISNCSCI or AIS (because it all needs to be more confusing, apparently).

    I believe you're correct that these classification systems did not exist in the 80s. What do you mean by "job specific software" for people with flaccid SCI?

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