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Thread: Is it the right way?

  1. #11
    Quote 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

  2. #12
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    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.
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  3. #13
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    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.
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  4. #14
    Senior Member muskie's Avatar
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    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.
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  5. #15

    Nothing new.

    Quote 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."

  6. #16
    Would somebody mind to summarize all the research going on regards the cure or its too much to write about. I read about lots of them but not sure which ones are real and others that you guys call snake oil.

  7. #17
    Senior Member muskie's Avatar
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    Quote Originally Posted by wesmaister View Post
    Would somebody mind to summarize all the research going on regards the cure or its too much to write about. I read about lots of them but not sure which ones are real and others that you guys call snake oil.
    You can go to the U2FP website and look at the trials around the world
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  8. #18
    Quote Originally Posted by muskie View Post
    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.
    thank you for telling me that! I will look out for this!!

    I dont know which injurys you guys have but here in germany when your an ASIA A even when you show willingness and seriously want to do something you get absolutly NOTHING ........ at least in my case.Made so much negative experiences and once again i´m jealous when Im looking to the States to Project walk or any other rehab facility who are working with ALL kind of injurys.

    In a few days i wanna summarize the things which are going on right now in europe for spinal cord injury.......

    thanks

  9. #19
    Senior Member muskie's Avatar
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    K11 my son is asia a and attends push to walk in New Jersey and enjoys it very much especially when he gets the drill sargent instructors
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  10. #20
    Hi KK11 and Welcome,

    Don't get a case of the "Grass is Greener" (on the other side of the fence)

    Sometimes the grass is just over the septic tank and fertilized by a lot of S***............

    From my point of view, 2 years into this new lifestyle, there is very little coordination of the work going on in the US and Canada. Most Doctors and Researchers are in it for the fame of finding some kind of "breakthrough" and the Gravy Train of money that is thrown their way so the can have job security, (well paid too), for life. Those who might really care are hampered by restrictive governmental regulations and lack of funding since they aren't out chasing the almighty dollar and glad handing the big donors on their way to noteriety ( example numero uno... Wise Young being forced to work overseas in less restrictive conditions (cheaper too I would bet). And once in a while the whole lot of them get together to regale each other with "Tales" of progress, breakthroughs, and promising things on the horizon while patting each other on the back or trying to debunk someone elses work to make their own look better.

    The simple fact that we continue to spend billions on space exploration and NASA, yet can't reasonably fund research and eradication efforts for the major medical issues plaguing the earth tells you where our "Cure" stands in the realm of Amerikan politics and popular opinion. Everyone is quick to Bi**h about their neighbor and his/her "government aid" and disability placard, but watches "science" being carried out on a space station no different than it was 20 years ago and waves the flag to go to war over some percieved "threat" to our desire to have others conform and become like us.

    The human race is lazy and short sighted, the Western world worse than others. Witness our desire for cheap energy leading to the destruction of the Earth and Groundwater through "fracking" rather than investing in the research to reduce the costs of renewables and seek other less damaging alternatives. And, by the way, we better be working on desalination technologies so we can drink seawater after ruining the fresh water supply.

    Our government, and the American people, find it easier to throw money at disabilities and illnesses like cancer, than to put the real effort into finding cures and therapies that restore and save lives. Curing cancer is now an industry that produces nothing but perpetual hope yet lines the pockets of corporations, universities, and researchers with vast sums of $$$$$.
    Spending 1/4 of the $ spent just on NASA over the last 40 years on medical research would have likely "cured" millions of people and "wiped out" diseases WORLDWIDE. Oh, and God forbid someone be allowed to smoke a Doobie to deal with the pain or nausea that science has been unable to solve, that is off limits because it's natural and nobody can patent it to make gobs of money overcharging the healthcare system!

    I will now come down from my soapbox.
    Jim

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