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    Is it the right way?

    Hey guys!

    I´m new here and I want to start a new thread because I want to know how do you think about the way the clinical research take place right know in the world.

    I´m an ASIA A T6 and I was injured in september 2011 and I´m just wondering how you guys deal with the fact that in one part of the world you hear of a success in the field and in the other part of the world they say no way forget it.

    I think a major problem is the fact that every individual has a different injury.....
    What do you guys think is the biggest problem in finding a cure for EVERYONE??
    Not only for a small population in the SCI community...

    Please let me know and thank you!!

    #2
    Originally posted by KK11 View Post
    Hey guys!

    I´m new here and I want to start a new thread because I want to know how do you think about the way the clinical research take place right know in the world.

    I´m an ASIA A T6 and I was injured in september 2011 and I´m just wondering how you guys deal with the fact that in one part of the world you hear of a success in the field and in the other part of the world they say no way forget it.

    I think a major problem is the fact that every individual has a different injury.....
    What do you guys think is the biggest problem in finding a cure for EVERYONE??
    Not only for a small population in the SCI community...

    Please let me know and thank you!!
    Good question. I can certainly give you my take of what it's like in the UK.

    We're in the middle of a paradigm shift. Like with any paradigm shift you have a spectrum of attitudes towards Cure. Within that spectrum you will have clinicians, SCIs and researchers with disparate views, hopes and expectations for a Cure. Part of that disparity is certainly down to the complex nature of spinal cord injury and the multitude of outcomes and secondary complications that accompany it. Clinicians develop practising styles and protocols based on what is the hottest issue in their day-to-day work - not on what they hope or foresee in the future.

    Many top clinicians will face very different day-to-day operational challenges meaning that Cure can be low down on their list of priorities. That doesn't mean they are against it, but rather it is not on their agenda. And don't forget, in most cases clinicians tend to spend the bulk of their time working with acute and sub-acute SCIs. So you can understand why they may "seem" the most conservative voice in the "Cure" chain. And to compound this further, the clinicians are often the only interface to the SCI Community. So you can end up with a skewed perspective of Cure depending upon the nature of your clinicians.

    As an SCI, having access to researchers working on Cures is not easy. We're lucky to have forums like CareCure where information can be shared freely. And we're also fortunate that annual symposiums such as Working2Walk give the Community a chance to listen and talk to researchers.

    Ultimately it will come down to a fearless minority of clinicians, SCIs and researchers that will help move the paradigm along through evidence-based studies and of course appropriate funding/resources. This minority is the group we need to support with gusto.

    The more conservative elements of the field will gladly jump aboard when the time is right for them.

    Comment


      #3
      Originally posted by KK11 View Post
      Hey guys!

      I´m new here and I want to start a new thread because I want to know how do you think about the way the clinical research take place right know in the world.

      I´m an ASIA A T6 and I was injured in september 2011 and I´m just wondering how you guys deal with the fact that in one part of the world you hear of a success in the field and in the other part of the world they say no way forget it.

      I think a major problem is the fact that every individual has a different injury.....
      What do you guys think is the biggest problem in finding a cure for EVERYONE??
      Not only for a small population in the SCI community...

      Please let me know and thank you!!
      I have followed the various "cure" trials and treatments. You need to ask a lot of questions. Anybody charging 10s of thousands to inject yu is suspect in my mind. My acid test is waiting for a treatment subject to be on TV cartwheeling across the stage. The reality is there will be a need for clinical volunteers until a successful treatment is found. The requirements here in the US are a high bar but I still feel they do produce the least possible risk.
      There are very good scientists working on several different approaches. They may disagree about the mechanism but none should be ignored unless they are reckless moving into human trials or as is often the case claiming they have a working treatment. I personally do not feel any have YET proven to fix much of anything.

      Comment


        #4
        "Success where?"

        Originally posted by KK11 View Post
        Hey guys!

        I´m new here and I want to start a new thread because I want to know how do you think about the way the clinical research take place right know in the world.

        I´m an ASIA A T6 and I was injured in september 2011 and I´m just wondering how you guys deal with the fact that in one part of the world you hear of a success in the field and in the other part of the world they say no way forget it.

        I think a major problem is the fact that every individual has a different injury.....
        What do you guys think is the biggest problem in finding a cure for EVERYONE??
        Not only for a small population in the SCI community...

        Please let me know and thank you!!
        "Success?"

        Where on Earth doctors are restoring, regenerating, regrowing the spinal cord in a human beings and having success?

        Show me the papers!

        The successful papers!

        Ti
        "We must overcome difficulties rather than being overcome by difficulties."

        Comment


          #5
          Whe Cares. Just maximize yourself to be in shape for when/if it happens.

          Comment


            #6
            Originally posted by Patrick Madsen View Post
            Whe Cares. Just maximize yourself to be in shape for when/if it happens.
            Patrick, you clearly care by repeatedly visiting this forum and piping up with your one-dimensional party line! Yaaaaawn.

            If we don't care this forum may as well not exist and we may as well not bother advocating for a Cure, end these ridiculous conversations about accelerating translational and clinical research and stop wasting our money by donating time and money. Why bother with any of it eh?

            Our (the Community) motivation drives the field. That is a fact. Without that motivation a Cure will NEVER materialise.

            Comment


              #7
              I honestly believe that the fact that every injury is unique is a major factor in why there is not a cure. If you pool 20 people with T6 ASIA A injuries, you will find that they nerve damage is different in each of them. While the result may be comparable, the nerve damage is unique. One of the biggest problems is that in order to test treatments, they have to find matching injuries to do their blind testing. Spinal Cord injuries are unique and the accepted methods of conducting trials does not really work for this.--eak
              Elizabeth A. Kephart, PHR
              mom/caregiver to Ryan-age 21
              Incomplete C-2 with TBI since 3/09

              Comment


                #8
                What are you talking about. you clearly don't know where I am on cure/care nor the my life of dedicating myself to SCI issues. I'm for a cure as much as anyone, in fact maybe more so. I'm stessing that many of the new injuries lack the motivation to maximize their potential with what they have left.

                Sure I push Care, without Care we wouldn't be living long enough or healthy enough to take advantage of the Cure. Care has given us new technologies and first responses, much longer and better healthoutcomes.

                Where has our Community driven the field? Do you mean the Chris Foundation with their million dollar salaries; The Rick Hansen Foundation, which I was a part of in the beginning, with their outrageous salaries and no communicaton?

                I trust if there is ever a lineup for a cure they will be taking those who "cared" enough to make themselves ready for it when it came vs. those who just cried your one line of Yawning about it. This is a two part senario, there can't be a Cure without Care. For myself, I'd rather be ready for it by maximizing my potential like I have in the last 40 yrs and be ready, as it seems to be, to live a long healthy life from a chair if it doesn't happen.
                Last edited by Patrick Madsen; 27 Feb 2013, 10:03 PM.

                Comment


                  #9
                  Originally posted by Patrick Madsen View Post
                  What are you talking about. you clearly don't know where I am on cure/care nor the my life of dedicating myself to SCI issues. I'm for a cure as much as anyone, in fact maybe more so. I'm stessing that many of the new injuries lack the motivation to maximize their potential with what they have left.

                  Sure I push Care, without Care we wouldn't be living long enough or healthy enough to take advantage of the Cure. Care has given us new technologies and first responses, much longer and better healthoutcomes.

                  Where has our Community driven the field? Do you mean the Chris FOundation with their million dollar salaries; The Rick Hansen Foundation, which I was a part of in the beginning, with their outrageous salaries.

                  As far as Yawning, you can go Fuck yourself.
                  You said "Who cares" to a newbie who asked an open and honest question. Just more Patrick Madsenisms - hence the yawn. And yes, that term actually exists here on CareCure Patrick.

                  PS Those orgs you cite do NOT represent the Community. They think they do but they don't. I'm glad you acknowledge your mate Rick's worthy salary though.

                  As for the "go f*** yourself comment".....I'd love to.

                  Comment


                    #10
                    Funny, never heard that term before and not sure how to take it. You're right I was out of line.

                    Perhaps it's time for me to take a break.

                    Comment


                      #11
                      Originally posted by titanium4motion View Post
                      "Success?"

                      Where on Earth doctors are restoring, regenerating, regrowing the spinal cord in a human beings and having success?

                      Show me the papers!

                      The successful papers!

                      Ti
                      That is of course never happened cause we all still sitting in our chairs. I think just the main question has changed in not ´´if´´there will be a cure in ´´when´´ will there be a cure........

                      I think a big problem is also the media......I only can tell you that from germany. There are so many brilliant researchers but they all coocking their own soup here and the media turns scientific news into breakthroughs. And because of this reason that nobody really works together in this field ( here in europe) we have lost so much money and we will definetly in the future......

                      In this case I´m jeallous when I look at the United States because you guys have so many organisations and these guys CARE to bring all those together and talk with each other and this is so important.
                      And what I also can tell you is the fact that the doctors in this field here in germany suck very hard. When I left the clinic when rehab was done they only told me ´´look after your skin and accept what you have´´.Only the guys who had a really incomplete injury with motorfunction they stayed a bit longer and they tried to do some stuff with those......they laugh at you here when you want to go to a rehab facility with a thoracic ASIA A injury and thats pretty devastating to me.But enough of crying :-)


                      I´m just hoping that all the trials which are going on right now are staying alive when phase 1 is finished and that there will be more participants because otherwise we don´t get a solution for this problem..... what do you think about that?


                      thank you

                      Comment


                        #12
                        Hi there KK11, and welcome to the maelstrom of conflicting views and emotions that you will find herein.

                        Sage words, as ever from Fly_Pelican. A paradigm shift indeed; I think socio-economics is going to force the agendas that face clinicians and carers. The status quo in disability handling is far from that in fact.

                        Even if the ranks of the disabled were not increasing year on year, the service providers are facing increasing economic pressures for many reasons, and these would exist without the current recession. What may really kick the agenda up the bottom is the gradually dawning realisation that NOT having valid therapies for serious neural dysfunction of which SCI is only one is costing literally a mint. We are facing a very real crisis. Let's keep hoping.
                        2010 SCINet Clinical Trial Support Squad Member
                        Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                        Comment


                          #13
                          So true KK11 about the media; they have much to account.

                          In Ruth Purves' recent request which I received in the e-mail, for further lobbying for cure, I added that we focused too much on living WITH paralysis rather than on living WITHOUT it.

                          In the UK the SIA is a large influential body that recently sent a paper to members asking for a direction of focus and featured 5 main questions, that were made to sound specific but which to my simple mind were not. The term "research into cure" occurred nowhere explicitly nor in fact did the word "cure". Tea, chocolate biscuits and sympathy are great but impractical except for generating more ramps, high-tech and expensive empowerment aids. Their ideas cost money, which is in diminishing availability, and perpetuate the myth that all wheelers are having a ball - they are NOT - and that their condition is neither progressive nor terminal, both assumptions that are open to challenge.
                          2010 SCINet Clinical Trial Support Squad Member
                          Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                          Comment


                            #14
                            Hi K11 if you still want to have therapy and a aggressive physical therapy Project Walk has an at home program maybe you should check out, even if it only makes you stronger endorphins are good for the soul.
                            Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

                            Comment


                              #15
                              Nothing new.

                              Originally posted by KK11 View Post
                              That is of course never happened cause we all still sitting in our chairs. I think just the main question has changed in not ´´if´´there will be a cure in ´´when´´ will there be a cure........

                              I think a big problem is also the media......I only can tell you that from germany. There are so many brilliant researchers but they all coocking their own soup here and the media turns scientific news into breakthroughs. And because of this reason that nobody really works together in this field ( here in europe) we have lost so much money and we will definetly in the future......

                              In this case I´m jeallous when I look at the United States because you guys have so many organisations and these guys CARE to bring all those together and talk with each other and this is so important.
                              And what I also can tell you is the fact that the doctors in this field here in germany suck very hard. When I left the clinic when rehab was done they only told me ´´look after your skin and accept what you have´´.Only the guys who had a really incomplete injury with motorfunction they stayed a bit longer and they tried to do some stuff with those......they laugh at you here when you want to go to a rehab facility with a thoracic ASIA A injury and thats pretty devastating to me.But enough of crying :-)


                              I´m just hoping that all the trials which are going on right now are staying alive when phase 1 is finished and that there will be more participants because otherwise we don´t get a solution for this problem..... what do you think about that?


                              thank you
                              I heard this 26 years ago. How far have we come?

                              Ti
                              "We must overcome difficulties rather than being overcome by difficulties."

                              Comment

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