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Thread: So what now??

  1. #1
    Senior Member cpaul's Avatar
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    So what now??

    After another W2W symposium and reading through the threads on the different speakers I don't see much change from previous years. More research, more money, more time and mostly promise to acute injuries. As for me I am now pushing 50 yrs old and 10 years in a chair. Been coming to this site for 9.5 of those 10+ years and its still the same old song. Did I miss something? personally I have done all that was recommended to stay fit. FES bike, weight lifting, good nutrition, No meds ( my choice) However my shoulders are starting to go from dragging around all this dead weight by not allowing myself to atrophy. I was really hoping that something of significance would have been offered @ W2W from Frank Reynolds, Keirstead , Davies, Wise, but its again seems like the same thing, More time, more money and acutes. BTW: why isn't MP ever at any of these gatherings? I know they are an on going joke but just wondering. I still get their propaganda in the mail. I guess it would appear that those of us mid 40's and on are likely screwed. Over time now I totally get where DA is coming from.

  2. #2
    Well one thing that I find very curious is millions upon millions of people were directly exposed to spinal cord injury in the movie "Avatar" it was clearly illustrated the life one lives when they are paralyzed and the joy "Jake" had when he was able to feel the grass in between his toes and run once again. Was there any talk from people of trying to help out and fund research? No. Was there any talk of how horrible it was when that crazy judge recently blocked ESC research again being able to be federally funded? No. All the talk centered around the cool special effects of the movie and the blue creatures, not the star of the movie a paraplegic man who seemed like a great guy and coulda been cured but society would not do it 140 years from now because of funding restrictions. It kinda tells the whole story why in reality we really don't have a cure for SCI in this day and age. Most people are pre-occupied with other things and if it does not directly affect them they could care less about it. A lot of folks seem to do everything possible to get paralyzed, football players cracking helmets together, kids doing triple back flips on BMX bikes, motorcycles that have technology to go 180 mph, but then when it comes to reversing what they have done, there are no answers. True human nature is kinda freaky when you really think deeply about it.
    Last edited by Curt Leatherbee; 11-19-2010 at 02:48 AM.
    "Life is about how you
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  3. #3
    I'm 17 years post injury, and have been like this since I was 15 years old. I always had hope that a cure would be found, but after 17 years it makes me wonder if it's even possible.

  4. #4
    Senior Member lynnifer's Avatar
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    I didn't want to bring down that thread or ruin any optimism, but I'm glad someone else noticed.

    The only difference between now and 8yrs ago is that talk might become action with some clinical trials, but it's still a very long road.

    I watched 4-ap from the 80's and it's only going to become available in Canada in the next quarter or half ... that's decades in development and it's not even going to be used in chronic SCI as it started out (used for MS) and from what I understand, it's not performing any miracles for spinal cord injured who take it. "Oh I feel more energetic," or "my bowels move better." I have not heard: I can pee on my own again!

    I am abhorred to believe there are no better bladder/bowel management systems available or that it hasn't been restored by now (since WWII??) ... as they're not THAT far from the spinal cord. And surveys (at least in Canada) have shown that's what the patients want ASAP along with sexual function return.

    Some people still can't breath on their own. Have their finger/hand function back.

    There is strength in numbers (a common police saying) and we just. don't. have. the numbers.

    I too thought Avatar might bring in a huge funding windfall ... but nope. People are apathetic. They figure it's impossible and that even if it wasn't, it would cost so much that the average person couldn't afford it. Regardless, I wish the director had donated even 0.5% of the earnings towards research ... but we aren't his problem. A poor showing as he's Canadian. I guess we should be thankful that he showed the concept could be positive at all ... though the message was far into the future (wonder what doctor he spoke to!)

    I'd like to donate more but I'm single and barely keeping afloat myself. You're asking an entire population who are 65% unemployed to fund very few ventures. I too wonder why Miami Project stays away from these symposiums?
    Last edited by lynnifer; 11-19-2010 at 11:38 PM.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  5. #5
    I think the stem cell thing is a double edge sword. Most walkers I talk to seem to think that its a forgone conclusion we are going to cure paralysis with stem cells in a couple years. Why get all excited about a problem that there is a cure for (which as WE all know there isn't one).

  6. #6
    cpaul,

    Legitimate clinical trials have started and later this month ChinaSCINet will begin injecting Umbilical Cord Blood Cells into Injured Spinal Cords. In 2011 SCINetUSA will be doing the same. Both are for chronics.

    Several countries have asked to be a part of these trials. Is this not progress to you?

  7. #7
    Senior Member brucec's Avatar
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    Quote Originally Posted by cpaul View Post
    After another W2W symposium and reading through the threads on the different speakers I don't see much change from previous years. More research, more money, more time and mostly promise to acute injuries. As for me I am now pushing 50 yrs old and 10 years in a chair. Been coming to this site for 9.5 of those 10+ years and its still the same old song. Did I miss something? personally I have done all that was recommended to stay fit. FES bike, weight lifting, good nutrition, No meds ( my choice) However my shoulders are starting to go from dragging around all this dead weight by not allowing myself to atrophy. I was really hoping that something of significance would have been offered @ W2W from Frank Reynolds, Keirstead , Davies, Wise, but its again seems like the same thing, More time, more money and acutes. BTW: why isn't MP ever at any of these gatherings? I know they are an on going joke but just wondering. I still get their propaganda in the mail. I guess it would appear that those of us mid 40's and on are likely screwed. Over time now I totally get where DA is coming from.
    i just turned fifty, been in the chair for 32 years, it started out with the "within 5 years", and for the last 30 years, i've continue to hear "within 5 years", i just got to the point of living my life, and if a cure comes, great, if not, just keep living life the best I can.

    p.s. also there's no money to be made by a cure, ther's billions being spent on research, physical theraphy, handicap equipment, doctors, etc.
    do the math
    Last edited by brucec; 11-19-2010 at 10:05 AM. Reason: spelling
    We must reject the idea that every time a law's broken, society is guilty rather than the lawbreaker. It is time to restore the American precept that each individual is accountable for his actions.
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  8. #8
    Massive progress in 2010 so far. Clinical trials starting left, right and centre - despite all the obstacles which are frequenty discussed here. And not just in SCI - work from ALS and SMA trials will also provide leverage. It is more vital now than ever to keep pushing to get that snowball effect. All we can do is push harder to make the inevitable happen sooner. Educate other SCIs. Educate families. Educate friends. Educate politicans.

    Quoted from the W2W thread by Horner: "squeaky wheel gets the grease, so squeak. Squeak"

  9. #9
    Fly, I agree with you in that we have to push. We must scrutinize all trials and studies and then keep pressuring for the next step and not allow researchers or others ot post some finding and then go into hiding. We must follow the trials that are and about to occurr and keep the discussion alive ont he forum. It will be rocky but moving forward.

    keeping on

  10. #10
    Quote Originally Posted by brucec View Post
    p.s. also there's no money to be made by a cure, ther's billions being spent on research, physical theraphy, handicap equipment, doctors, etc.
    do the math
    There definitely isnt billions being spent on research and physical therapy. If there was we would be home and dry by now. There is however billions being spent on care, medicine and disability equipment - I agree with you there.

    There might not be money to be made out of a curing paralysis (well apart from maybe some short-term profits for medium-sized biotechs), but there is a shit load savings for insurance companies, benefit agencies, governments and health institutes. You can look at it two ways.

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