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    SCI survey--make your voice heard

    **Most importantly: please be assured that your personal contact information will be kept strictly confidential and if you prefer to fill out the survey anonymously please do so. If you would like, you can email me your response rather than posting it.

    The ongoing scientific research regarding spinal cord regeneration would benefit greatly from input from people who live with paralysis everyday. I am a researcher as well as a quadriplegic and I see first hand the gap in communication existing between scientists and the spinal cord injured community. This survey is designed to learn what people living with paralysis want from the research community. If you have a spinal cord injury please fill out this form and return it to me as soon as possible. If you have a friend or relative who has a spinal cord injury please forward this form to them and to as many people as possible and make your voice heard. We have the responsibility of informing researchers about what functionally recovery is important to those of us living with SCI, no one else knows what we go through everyday. The results of this survey will be brought to the eyes of SCI researchers, so we need as many people to respond as possible. Scientists believe hard numbers and that's what we have to give them.



    1) What level is your spinal cord injury and what year did it occur?

    2) What small gain of function could dramatically improve your life?
    Rank the following in order of importance to you, 1 being most important and 7 being least important:
    ___ A) arm/hand function
    ____ B) upper body/trunk strength and balance
    ____ C) bladder/bowel function, elimination of Dysreflexia
    ____ D) sexual function
    ____ E) elimination of chronic pain
    ____ F) normal sensation
    ____ G) walking

    3) Do you think exercise rehabilitation is an important aspect of regaining function?


    4) Do you currently have access to any exercise rehabilitation? Describe.




    5) Name:
    Address:
    Phone:
    Email:

    6) Any further comments or suggestions.

    Kim Anderson, Ph.D.
    Reeve-Irvine Research Center
    Dept. Anatomy and Neurobiology
    1216 Gillespie Neuroscience Research Facility
    Univ. of Cal., Irvine
    Irvine, CA 92697-4292
    Ph. 949-824-5331
    Fax. 949-824-9272
    kanderso@uci.edu
    www.reeve.uci.edu

    [This message was edited by kanderson on Oct 19, 2002 at 08:29 PM.]

    [This message was edited by kanderson on Oct 19, 2002 at 08:31 PM.]

    [This message was edited by wcrabtex on Oct 30, 2002 at 01:47 PM.]

    [This message was edited by wcrabtex on Oct 30, 2002 at 01:51 PM.]

    #2
    Here is Kim´s survey request as mentioned on the Cure forum.
    "So I have stayed as I am, without regret, seperated from the normal human condition." Guy Sajer

    Comment


      #3
      up

      ... [img]/forum/images/smilies/smile.gif[/img]...

      Comment


        #4
        how about the researchers find a full cure. then they cure all of us. then those only wanting bowel/bladder or trunk or wutever have their newly repaired cord cut to fit the amount of recovery each desire.

        Comment


          #5
          DA

          That is actually funny and points out the absurdity of those who want less than a full cure.

          I wonder how researchers will use the information from the survey. I think when you regenerate a spinal cord you get back what you get back. Although, I guess they could focus on regenerating one spinal cord tract versus another. And if walking were important to the community then research could be directed toward advanced rehabilitation techniques to help overcome learned non-use.

          I still think DA has the best idea, though. [img]/forum/images/smilies/smile.gif[/img]

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

          Comment


            #6
            How do you focus on "curing" only one aspect of SCI?

            I think part of the purpose to this is to show that there are MANY problems that come along with SCI. Not walking is just the most visible... also if a "cure" can partially regenerate the cord but not enough to walk maybe some deranged researcher's think it's not worth it even though it could make a HUGE impact on someone's quality of life while they wait for the "full cure".

            I'm pretty sure I'd be a less miserable para if I could have real sex... being able to feel my dick and having ability to orgasm again could certainly help pass the time. -)
            "Oh yeah life goes on
            Long after the thrill of livin is gone"

            John Cougar Mellencamp

            Comment


              #7
              when i say i want to walk, that doesn't mean i want to walk but keep quad arms and hands and not have bowel/bladder control etc.
              i want to walk mean full cure.

              Comment


                #8
                Mike:

                Ditto on "passing the time." But I want it ALL, like most who come here. When I read of this survey on another thread I came to this link intending to put in my two cents in favor of walking. I'm always concerned when I hear of researchers claiming other priorities are more important to those with SCI than "walking." Like you, DA, and Jeff, when I say I want to "walk" again I mean the whole deal...being normal, or at least having a fighting chance to push my body towards being what it once was. That includes everything, legs, arms, hands, feet, torso, bowel, blader, and sex.

                Of course reducing pain, spasticity, or a specific dysfunction would improve the quality of my life! No one is disputing it! If a doctor could give me my bladder back today, of course I'd take it. But this isn't the issue. The issue is how we're being presented!

                Anderson's survey asks:

                "What small gain of function could dramatically improve your life?"

                ...which is cut-and-dried. Yet apparently this question wasn't clear to others. In reporting the opening day events, Dr. Young relates:

                Then Sasha (Alexander) Rabechsky, a paraplegic spinal cord injury scientist spoke. He had two major points. The first was the need for scientists and clinicians to talk to the spinal cord injury community and understand what people in the community really wants. He pointed out to the survey that Kim Anderson, a quadriplegic scientist at the Reeve-Irvine Center, is carrying out, suggesting that the priorities of the community differs considerably from the standard goal of "walking".

                Where does Anderson's survey say anything about our ultimate priorities? This misrepresentation is an outrage! People have in good faith filled out this survey, explaining what "small gain of function" would dramatically improve their lives. People who can't deficate, urinate, have normal sex, feed themselves, clothe themselves, scratch, breathe, etc. are bound to feel that being able to do ANY of these things would dramatically improve their lives. But in no way does this imply these things are what they "really" want...or that the priorities of the community differ from the standard goal of "walking"!!!

                If surveys such as this were used to promote regenerative clinical trials on the basis that even small functional gains are viewed as being worthwhile by those with SCI, then I would agree they serve a needed purpose. But in this instance such was not the case! Here trusting individuals with SCI said what small gains would dramatically improve their lives...and no more! Yet their answers to this seemingly straightforward question were twisted beyond recognition as meaning their "priorities" weren't to walk (which most of us speak of while meaning getting it all back). Regardless of how Anderson meant the survey to be used, as presented by Rabechsky the "priorities" of trusting indiviguals with SCI were grossly misrepresented!

                Whoever is responsible for this outrage owes the SCI Community an abject apology...and this point should be rectified immediately at the conference!
                James Kelly

                Comment


                  #9
                  James Kelly - you're absolutely right

                  I have been raging, not sleeping about this exact misrepresentation by Rabchevsky. I emailed him about my disappointment.

                  This was before I read the survey. Then I actually read the survey, and realized it was a trick survey!! Now I am absolutely livid. The survey was specifically designed to evoke the response that was sought (that sci patients don't have walking as a priority)! This is what I wrote Anderson yesterday by email:

                  "This is an awfully misleading question [in the survey]- the word "small" completely throws off the meaning. Is "walking" a small gain in function in your
                  opinion? Plus, wouldn't walking mean a person has upper body trunk strength
                  and balance? Sounds like the results will be automatically skewed to show
                  walking isn't the top priority (by adding the word "small.") If you pass
                  this on to researchers, please say for me walking is everything."


                  I WILL NOT LET THIS ISSUE REST. This is an outrage. This survey was cited by a researcher who is spinal cord injured (which supposedly gives him credibility) to convince scientists throughout the world that sci patients don't have walking as a priority!!! *********I join in demanding a retraction.********

                  Comment


                    #10
                    Hey, I apologize to everybody, including Kim, if I have misrepresented anybody's views. As far as I understand, the survey is still going on. I did not mean to provoke this kind of response to the survey. Wise.

                    Comment


                      #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.

                      Comment


                        #12
                        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.

                        Comment


                          #13
                          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 ~
                          ~See you at the CareCure-used-to-be-paralyzed Reunion ~

                          Comment


                            #14
                            "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.
                            "Oh yeah life goes on
                            Long after the thrill of livin is gone"

                            John Cougar Mellencamp

                            Comment


                              #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.]
                              Karen M
                              C 3/4 inc. central cord
                              10/29/1992 - 18 years, but who counts?

                              Comment

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