Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 24

Thread: SCI survey--make your voice heard

  1. #11
    Gosh guys, I too am sorry for all of those who felt misled by the survey. I highly doubt that the results of this survey will have a deleterious effect on ambulation research.

    I think it was directed toward the segment of the SCI community that does not view walking as their only objective. Most aspects of regenerative medicine have focused only on walking while ignoring the concerns that Mkowalski brought up. We should not assume that therapies aimed at restoring walking ability will also restore b/b, sexual function and arm/hand and respiratory function in quads. For example, Adam Taliaferro can walk but his hand function is that of a low quad. I would personally like to see one or two researchers focus on non-ambulation centered restorative therapies. So if this survey can help them determine which are the most important to us then I welcome it.

  2. #12
    Senior Member DA's Avatar
    Join Date
    Jul 2001
    Location
    beaumont tx usa
    Posts
    32,389
    no seneca
    that is exactly what they want. divide us up. they dont want us with 1 single voice. if a full cure is possible, and it is, we should push for that as a group. the anti-cure will try to divide that voice.

  3. #13
    Senior Member Jeff's Avatar
    Join Date
    Jul 2001
    Location
    Argao, Cebu, Philippines
    Posts
    6,864

    I'd be interested as to how...

    researchers could focus on non-ambulatory cure research. Regenerating the cord is just that. Replacing grey matter is ambulation for some but hand function for others. Other than in the category of rehabilitation, I don't see how they can focus on one versus the other. There is still so far to go in regenerating a useful amount of the chronic, contused cord that I can't imagine researchers are choosing specialties, yet.

    I just wish the purpose of the survey was better explained. How will researchers use this information?

    Is it just to motivate them? Like....even if they can't restore walking yet, they would at least know that even incremental improvements are very much desired by the community.....?

    Or will the information really be used to direct research efforts?

    Kim, can you please tell us more?

    ~See you at the SCIWire-used-to-be-paralyzed Reunion ~

  4. #14
    Senior Member mk99's Avatar
    Join Date
    Jul 2001
    Location
    toronto, canada
    Posts
    3,494
    "I'd be interested as to how researchers could focus on non-ambulatory cure research. Regenerating the cord is just that."

    exactly. The only thing that comes to my mind is to do peripheral nerve re-routing to get bladder/bowel/etc. That's already being done in Italy & China ... and is considered even MORE controversial (if you can believe it) than just trying to regenerate spinal cord to begin with.

    Actually I suppose maybe some fancy new use of surgically implanted FES technology could possibly bipass the injury as well... push this button to pee, etc. I'm not saying these are bad goals but regenerating the cord solves ALL problems including pain & spasticity. Why go off on these tangents at all? Fix the damn problem.

  5. #15

    Let the scientists know what you think!

    My personal opinion is that research scientists know a heck of a lot about rats and not much about what my personal needs and priorities are. I would like them to know that as a C4 inc. with severe spasticity (no muscle spasms but very stiff muscles), the ability to semi-walk in a make-shift standing frame with wheels with someone behind me, sensation in the right places but pain that makes it almost (but not quite) questionable as to it's desirability. But the most important thing is that is that if I could have reduced muscle tone in my right arm as in my left, something seemingly so simple, I could transfer. I wouldn't need a power chair, an attendant, I could drive, I could shower, insert my own suppository, for God's sake, and we all can extrapolate from there. I could maybe walk with a walker on my own for short distances until "the cure". So, yes, I want the scientists to realize just how important a "small thing" like reducing spasticity can be to someone like me.
    I'm willing to bet that there is no mouse or rat model that fits the above discription.

    Karen M

    [This message was edited by Karen M on Oct 31, 2002 at 05:30 PM.]

  6. #16
    It is important that the SCI community let scientists know what the community wants. Sasha Rabechevsky and Kim Anderson are scientists with SCI, trying their best to get the community to communicate more with scientists. I met Kim and think that she is doing the right thing in trying to get more people to fill out this survey. Contrary to everything else, the fact that Sasha got up and walked across the stage with FES was itself a message that spoke louder than words. It is telling people that walking is important to him. But, he did not pretend to speak for the whole community. He praised Kim Anderson for her attempt to get this survey going. Likewise, I have been trying to do so as well.

    During this Neurotrauma meeting, more than a few people came up to me to ask what I thought of Christopher's recovery and whether I thought that it was going to lead to anything more. My answer was of course yes but I saw a lot of skeptical looks on people's faces. I suspect that many probably don't think that it will happen in ten years. On the other hand, few of them know what is happening in terms of clinical trials. Many scientists are not even aware of the clinical trials that are going on in the field. They don't know of the stuff that is happening overseas. Most scientists are probably thinking about the specific technologies that they are working on, the problems that they are encountering, and how far they have to go to get things into clinical trial.

    It is one of the reasons why the NINTS (the combination of the international and national neurotrauma meetings) is so important. The International group has more clinicians and many more American clinicians came to this meeting than normally to the National Neurotrauma meeting. Actually, there are relatively few meetings where large numbers of clinicians and scientists meet. A small group of scientists, probably no more than 10-20 attend both sets of meetings. Likewise, a small group of clinicians attend both sets of meetings. Only a handful of clinicians and scientists actually meet large numbers of people with SCI.

    Wise.

  7. #17
    Senior Member DA's Avatar
    Join Date
    Jul 2001
    Location
    beaumont tx usa
    Posts
    32,389
    if a person has lung cancer and breast cancer, do they ask to cure that person lung cancer and leave the breast cancer? vise-versa?

    DON KING, "ONLY WITH SCI"


    dr young when her poll is finish and results show 43% bowel/bladder and 39% walking and 22% pain etc etc. then what? how will research change in based on these numbers?

  8. #18
    Senior Member
    Join Date
    Apr 2002
    Location
    Newcastle, Australia
    Posts
    741

    Interesting point

    I do agree with that point DA.

    I think the survey is trying to prioritise where research should be heading.
    Like you, I want SC regeneration and all my bodily functions restored and I won't settle for anything less.
    The point Wise is trying to make (I think, and correct me if I'm wrong doc) is researchers don't often meet each other and may not know what is going on elsewhere, let alone knowing what the SCI community wants. The survey was designed to inform researchers of our needs, wishes etc. and keep them on track.
    I saw the survey as doing that, not holding back the frontiers of research or collecting numbers for the sake of it.
    Andrew

  9. #19
    Junior Member
    Join Date
    Jan 2002
    Location
    CA, USA
    Posts
    6
    Well, there seems to be quite a bit of outrage to my survey. Please let me clarfify some issues. First of all I am not trivializing the importance of regaining walking function to people with spinal cord injuries, myself included. When I ask what "small gain of function could dramatically improve your life" it is to show scientists that something they may view as insignificant and not worth studying could really by important to the SCI population as a whole. The results of the survey will be used to develop functionally relevant (to humans) outcome measures for future clinical trials. The outcome measures should be realistically classified into what is attainable for high quads vs low quads vs high paras vs low paras vs lumbar injuries. Thinking that regaining walking function will restore all the other problems associated with SCI is unrealistic. Having a spinal cord injury and being a neuroscientist, I am VERY realistic about where the research field is currently. And the fact of the matter is that many experiments and even clinical trials are considered "failed" because walking was the only outcome being assessed and walking was not regained. Research is not simple and scientists are not holding back any information in some conspiracy. The simple fact is that lab animals and humans are not the same and it is our responsibility as people with spinal cord injuries to educate researchers about what is really going on with humans. Only when this communication occurs do we have any chance of developing treatments for regaining any amount of functional recovery.

    As for what Sasha Rabchevsky spoke about at the neurotrauma meeting, I am behind him 100 percent. First of all the electrode implants and electrical stimulation paradigm he chose to do are for what's important in his life. He had them done for standing function, not walking, but is now using them to propel forward with a walker. His situation exemplifies the point of how much extensive rehabilitation will be required for any treatment to be considered successful. He's a low para, is in excellent shape, and it has taken him almost a year to build up his endurance to stand with the electrodes for any length of time. When scientists look at function in lab animals rehabilitative exercise is not considered. His point being that we as scientists need to design experiments that are clinically relevant to humans. How can that occur if they don't understand what humans are dealing with? His second point is that, no his opinion is not the majority view of the SCI population and neither is mine. Your opinion is, but if the SCI community does not voice its concerns to the researchers then the researchers cannot be faulted for not giving you what you want.

  10. #20
    Senior Member DA's Avatar
    Join Date
    Jul 2001
    Location
    beaumont tx usa
    Posts
    32,389
    "Having a spinal cord injury and being a neuroscientist, I am VERY realistic about where the research field is currently. And the fact of the matter is that many experiments and even clinical trials are considered "failed" because walking was the only outcome being assessed and walking was not regained."


    Sooooooooooo there will be no silver bullet cure an any therapy that does not return walking, cure, is a failure.
    I SAY AGAIN....
    no silver bullet yet anything less than a silver bullet is a failure.



    " Your opinion is, but if the SCI community does not voice its concerns to the researchers then the researchers cannot be faulted for not giving you what you want."

    cure spinal cord...simple...for those who does not want all function returned, recut cord to desire level. THERE IS YOUR ANSWER AND IT COVERS EVERYONE OPINION CONCERNING RESEARCHER.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •