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Thread: ASIA Rating/Surviving Axons/ Remyelination/Recovery

  1. #21
    Senior Member spidergirl's Avatar
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    Quote Originally Posted by dogger
    Schmeky , while the ASIA scale is a very useful tool in describing SCI , it is still not perfect . Until early last year I had not had any tests done that would indicate my ASIA scale since 1991 . Though I'm a walking C5/6 quad , in 1991 I was [or would have been if my SCI unit used the ASIA scale then] graded an ASIA A . On The ASIA scale the only places I got zeros then were C7 [triceps] C8 [finger flexors] and S4/5 [anal wink] . Therefore classifying me complete [ASIA A] .

    Sometime before Feb 2005 [ I think about 2003] I got this back [anal wink/sensation] to become an ASIA D . In 2005 I was in the HP184 trial [was tested on the ASIA scale before starting] and gained about 8 points in both motor and sensation on the ASIA scale while taking HP184 . When the trial results were released they showed that I was taking 200mgs per day . A large part of my motor score increase was in triceps [R/H 0 to 2 , L/H 0 to 3] . Now while something happened in the 13 + years to move me from ASIA A to D , I'd be pretty sure it wasn't remylienation .

    So to my mind , I would have got similar results if I'd been in this trial while I was still ASIA A . A bit of a side note , I was told that of the trial participants in my group , I showed the biggest improvement . I'd also like to add , that there were other tests apart from the ASIA test to base my improvement . One was a timed 10 metre dash . At the start I was taking 30 seconds and by the end of the I had it down to 20 seconds . Now while this doesn't remotely make me any Ben Johnson [I use him because neither of us were drug free for our PBs ] , I bet any athete wishes they could slash their PBs by 1/3 over a 20 week period .

    I also realise that I am somewhat unusual , though not unique , in being an ASIA A[technically complete] with the function and sensation I have .

    I'm saddened to hear that it appears as though Aventis will not be doing further trials with HP184 . While picking up 8 points [out of 100] in function may not seem much , let me tell you it was a souce of constant joy and amusement/amazement to have triceps [albeit weak ones] working again after so long . When they first started working I was like a kid with a new toy and wore them out by sitting with my arm over my head stretching and bending my arm without having my hand coming back to smack me in the face . Damn I miss them now .

    There were other less quantafiable improvents like more ''trustworthy'' bowels and bladder along with being able to squeeze out farts when I felt them building [ yeah , I know , I'm easily amused ] .

    What are you saying you received a therapy that made you ASIA D? This is one of the most confusing things i have read. Please be more specific?

  2. #22
    Senior Member Schmeky's Avatar
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    Peter,

    Thanx for your personal assessment and experience with the Aventis trial and of the ASIA scale based on your experience.

    Since my T-4 injury I have made significant gains. My lower back muscles have returned, abs, and obliques, as well as sensation in certain areas, however, it is far from normal. It feels as though I should be able to move my legs based on deep tissue sensation, but I can't.

    Learning of your success is great news. There are potential therapies than can, with time, produce results. You're a prime example.

    Good to hear from you.

  3. #23
    Senior Member dogger's Avatar
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    Sorry for confusing you Spidergirl . I'm a simple , dumb , country bloke who finished my schooling when I was 16 , so my writing skills are very inadequate when measured alongside your superior English ability . I am not saying I took part in any therapy that made me ASIA D . The last time I did any SCI therapy at all , was early Nov 19991 in my SCI unit rehab centre . The 1991 ASIA scale test [showing me as ASIA A] I talk about , was done there a few days before I left .

    I am saying that some time between that 1991 test and my next one in 2005 [which showed me as ASIA D] I regained the anal wink/sensation . I think it was around 2003 that I noticed it felt like this had changed . One of the criteria of entry into the HP184 trial was participants could not be ASIA A , so given my medical records showed I was , I had to undergo the joys of the finger up the bum test .

    I hope this clears up any ambiguity in my post . Please ask if there are other things in there that you find difficult to understand . Once again , please accept my apology for my inability to articulate at the level required for your easy comprehension .
    Quote Originally Posted by spidergirl
    What are you saying you received a therapy that made you ASIA D? This is one of the most confusing things i have read. Please be more specific?

    Schmeky , thank you for the reply . While I have not regained any function apart from at the bit changing my ASIA scale over the years I have regained quite a bit of useful sensation . Like you , it is far from normal , but it is good enough to lessen a lot of my concern on pressure sores . I have also had some hot/cold sensation return . When asked to explain this , I give the following description . I would not feel the heat from a lit cigarette being butted out on my body , but I notice the difference in air temperatures between the morning and middle of the day in summer . So it is a delayed sensing ability to steady change .

    In 1996 , I received 3rd degree burns to 10% of my body in a work accident , so this confuses my sensation score [to the point of me now testing as a C4/5 rather than a C5/6] nowdays . The resulting skin grafts also stop sweating on some areas of my my upper body where this previously occurred .

    From my participation in the HP184 trial , I believe potassium/sodium channel blockers , while not a SCI ''cure'' definitely have potential to help some people .
    [Quote=Schmeky]Peter,

    Thanx for your personal assessment and experience with the Aventis trial and of the ASIA scale based on your experience.

    Since my T-4 injury I have made significant gains. My lower back muscles have returned, abs, and obliques, as well as sensation in certain areas, however, it is far from normal. It feels as though I should be able to move my legs based on deep tissue sensation, but I can't.

    Learning of your success is great news. There are potential therapies than can, with time, produce results. You're a prime example.

    Good to hear from you.
    Every day I wake up is a good one .

  4. #24
    That's excellent news Dogger. I thought the results were disappointing across the board. Glad to hear it was a success for you.



    Quote Originally Posted by dogger
    Schmeky , while the ASIA scale is a very useful tool in describing SCI , it is still not perfect . Until early last year I had not had any tests done that would indicate my ASIA scale since 1991 . Though I'm a walking C5/6 quad , in 1991 I was [or would have been if my SCI unit used the ASIA scale then] graded an ASIA A . On The ASIA scale the only places I got zeros then were C7 [triceps] C8 [finger flexors] and S4/5 [anal wink] . Therefore classifying me complete [ASIA A] .

    Sometime before Feb 2005 [ I think about 2003] I got this back [anal wink/sensation] to become an ASIA D . In 2005 I was in the HP184 trial [was tested on the ASIA scale before starting] and gained about 8 points in both motor and sensation on the ASIA scale while taking HP184 . When the trial results were released they showed that I was taking 200mgs per day . A large part of my motor score increase was in triceps [R/H 0 to 2 , L/H 0 to 3] . Now while something happened in the 13 + years to move me from ASIA A to D , I'd be pretty sure it wasn't remylienation .

    So to my mind , I would have got similar results if I'd been in this trial while I was still ASIA A . A bit of a side note , I was told that of the trial participants in my group , I showed the biggest improvement . I'd also like to add , that there were other tests apart from the ASIA test to base my improvement . One was a timed 10 metre dash . At the start I was taking 30 seconds and by the end of the I had it down to 20 seconds . Now while this doesn't remotely make me any Ben Johnson [I use him because neither of us were drug free for our PBs ] , I bet any athete wishes they could slash their PBs by 1/3 over a 20 week period .

    I also realise that I am somewhat unusual , though not unique , in being an ASIA A[technically complete] with the function and sensation I have .

    I'm saddened to hear that it appears as though Aventis will not be doing further trials with HP184 . While picking up 8 points [out of 100] in function may not seem much , let me tell you it was a souce of constant joy and amusement/amazement to have triceps [albeit weak ones] working again after so long . When they first started working I was like a kid with a new toy and wore them out by sitting with my arm over my head stretching and bending my arm without having my hand coming back to smack me in the face . Damn I miss them now .

    There were other less quantafiable improvents like more ''trustworthy'' bowels and bladder along with being able to squeeze out farts when I felt them building [ yeah , I know , I'm easily amused ] .

  5. #25
    Quote Originally Posted by spidergirl
    [FONT=Comic Sans MS][COLOR=darkslateblue]There is a lot of dishonesty on this forum. The further I research and talk with others the more I come to the conclusion that the CRPA really would not make a difference.
    Gosh, I'm sorry you feel that way Spider. Drs Davies, McDonald, Kiersted and others have thrown their support behind this bill and desperately want it to pass as NIH funding of SCI research has dropped by 15%. I can't think of one SCI researcher who would agree with your assessment that the CRPA would not make a difference.

  6. #26
    Government funding (like CRPA) + private sector investment would be ideal. We shouldn't choose between the two, we should pursue both imo.

    When it comes to funding, more is definitely better!

    I don't know how to pursue private sector funding...I guess that will be up to those with the contacts. I suppose most investors would want to see a business plan and potential return on investment.

  7. #27
    Senior Member dogger's Avatar
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    Antiquity , that is the message I've received from Aventis too , which puzzles me . I spoke with quite a few participants and many of them along with the SCI professionals involved in the trial felt it showed promise and was worth pursuing . I was also told [and this was only hearsay] that there was some problem with the way the data was compiled and that it may have been corrupted in some way by administrative failings . After much searching , I have finally been given the contact for someone [ a Dr] in Aventis here in Oz who supposedly knows what is going on . I'll try to ring them as soon as I can .

    I had an inkling during the trial that the data may not have turned out very well . This was due to what I considered very poor wording and choices on the survey we had to complete each month . I can't remember specifics , beyond the fact that I used to have to draw a line through all the multiple choice options on some of the questions and write in my observations . The survey appeared to me , to have been compiled by someone who knew very little about the abilities/deficits of SCIs who met the criteria to qualify for the trial .

    While I realise the results I got were far from a cure , it did give me a bit of a buzz to find something that gave me increased function and sensation after nearly 16 years of not seeing anything that I would consider to have been beneficial in any way .
    Quote Originally Posted by antiquity
    That's excellent news Dogger. I thought the results were disappointing across the board. Glad to hear it was a success for you.
    Every day I wake up is a good one .

  8. #28
    Senior Member spidergirl's Avatar
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    Quote Originally Posted by antiquity
    Gosh, I'm sorry you feel that way Spider. Drs Davies, McDonald, Kiersted and others have thrown their support behind this bill and desperately want it to pass as NIH funding of SCI research has dropped by 15%. I can't think of one SCI researcher who would agree with your assessment that the CRPA would not make a difference.

    I feel bad for stating my thoughts sometimes because they may come across rude or harsh. I don't drop names and disclose personal information. I speak my mind, and very blunt and too the point and not afraid to ask questions or too point concerns I may have. I have heard that the science will propel regardless of the CRPA and that the CRPA was a lot for physical therapy and quality of life. Please don't get me wrong anything and everything will do! and help!!!!! I don't care if you inject horse manure in my back- lets just get it done. There seems to be a lot of time and devotion to setting things up and building blocks rather than delivering a cure. People are making this stuff a life long career. There is a small group I have been working on and putting together to try to go public with some new faces of paralysis. I can't say what or who or even whether or not my ideas will come to fruition but I will try.

    I may see things or feel things differently than most folks on this forum but I have always learned to check a fact before it becomes a fact. I don't buy a lot of BS and I think there's a lot we DONT know. If there was proof than private donors will jump in I PROMISE!! If somebody told us they need X amount of dollars for a chronic cure in 3 years- that's something to fight for IMO more than anything else. I am not fighting for research I am fighting for a cure!!
    Last edited by spidergirl; 12-16-2006 at 12:49 AM.

  9. #29
    I wish I thought somebody could come up with a cure without doing the research first. Unfortunately, seems to me that it's a process, not an epiphany. This is why we never get a date, or a dollar amount. Nobody knows.

    Cure advocacy sure never was my career plan, and the pay is for shit LOL. This life path fell in my lap when I fell on my face though.

    I wish the CRPA was more hard-core cure oriented. We need it all anyway, the qol etc., but I'd like to see a lot more cure funding on it.

  10. #30
    Senior Member spidergirl's Avatar
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    Quote Originally Posted by betheny
    I wish I thought somebody could come up with a cure without doing the research first. Unfortunately, seems to me that it's a process, not an epiphany. This is why we never get a date, or a dollar amount. Nobody knows.

    Cure advocacy sure never was my career plan, and the pay is for shit LOL. This life path fell in my lap when I fell on my face though.

    I wish the CRPA was more hard-core cure oriented. We need it all anyway, the qol etc., but I'd like to see a lot more cure funding on it.
    As far as I am concerned the cure is out there it's a matter of testing it in humans and figuring it out and playing around with different elements. I find it very disturbing that Dr. Young has not given us any hope lately...it's rather very hurtful too us all that suffer and contribute to the website. I just wanna know if we have a chance or if they will continue to just keep building blocks while the cure lingers around.

    Perhaps maybe he doesn't see much right now and can't tell us much. I know he sees a lot and has the power to tell us what his eye's are really seeing. I don't mean to get frustrated with him but he needs to shed some light at least a little. I miss Dr. Young's positive energy...I don't see it. It's the end of the year, it's the holiday's our families are buying Christmas trees or celebrating Hanukah and it's not fun when you can't hang an ornament on the tree or stand up and have a kiss under the missal toe. I am sad and hurting.
    Last edited by spidergirl; 12-16-2006 at 04:37 AM.

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