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Thread: Cure Experiences

  1. #1

    Cure Experiences

    From the Tijuana shark embryo transplants to Diapulse, we all had our "first" with an alleged cure for spinal cord injury. Upon finding out that the claims were not true (through personal experience or some other way), how did it make you feel?

    For me, I was about eighteen months post and found a cure being touted by the "International Spinal Cord Regeneration Center". Being newly injured and not well-versed in biology, the impressive sounding name and the fact that they had so many people with "Dr." in front of their names convinced me that they had the cure.

    Still being vent dependent at the time, I wanted that cure. Claims that the USA were just a little slow to catch on and that a clinical trial in the US would slow my ability to get the cure here made sense, with the FDA and everything. These doctors, including their lead guy Dr. Ramirez (who they note received training in the US and England) wanted to help people immediately. I thought, "I can go there and get cured while the US researchers are still plodding along, delaying a cure."

    The plan sounded good. I told everyone at OT and PT that the cure was here, and I just needed $30,000 or so to get it. Well, they probably thought I was a schmuck, believing such hype. But, people were just getting accustomed to the Internet and it was going to change the world and allow people to locate obscure information they couldn't find without it. So, maybe it was true.

    In my mind, I was cured.

    While figuring out how to get the thirty-large I needed for the cure -- my cure -- I decided to try and find out more information on this place. A few searches later, I found some reports of those who had been there. My first thought was "Man, I wonder what these people are doing now after being paralyzed? Probably playing basketball, skateboarding... all kinds of things!" I was wrong.

    The first report, still paralyzed. The second? No different. They had more feeling, but they were still paralyzed. Report after report was the same.

    There were one or two people who had recovered some arm function, but the majority were still paralyzed. Everyone mentioned that they were happy they had gone and were grateful for the "recovery" they obtained from it, but... that wasn't good enough for me. I wanted to be free of the ventilator, at a minimum.

    The realization that this wasn't really the cure hit me kinda hard. I held it all in, but it hurt just the same. I was glad that I hadn't gone through with the procedure and lost $30k I didn't have, but I still felt a sense of betrayal. These guys were doctors. They were supposed to help people, yet they exploited them.

    The experience definitely taught me to be skeptical of any other "cure" that popped up.

    With all that out of the way... what was your "first"?
    ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

  2. #2
    Senior Member mk99's Avatar
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    good post Steven.

    For me I was still an in-patient and getting really furious and angry with what was considered "research" at the facility I was in. Their idea of research was determining how much force was required to push a wheelchair up differently angled ramps. I was thinking seriously of ending my life at this point.

    I came across Miami Project and they sounded really agressive and like they were doing real research. I forced my reluctant doctor to fill out all the forms they had for participating in human trials. Mentally, I was already there being a human guinea pig in REAL research.

    Then I get a nice form letter back. Thanks for your interest, got nothing for you. How about some money?

    Today, I don't blame Miami Project for anything other than a "glaciers move too fast" mentality. But I did feel deceived and angry at them for wasting everyone's time filling out intricate forms when they had (and still have) nothing to offer and only wanted more money.

  3. #3
    Senior Member Jesse's Mom's Avatar
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    I didnt start reading the Cure forum for the first year and a half of jesses accident because I was still hoping that he would walk. Now I cant leave the Cure forum. But when he was first injured I remember thinking to myself, Well, at least there will be a cure in 7 years.

  4. #4

    The cure is always happening in exotic places

    19 years ago I received a postcard (it is dated August 7 1986) from a friend, a C6 quad, who had then just arrived at the hospital in Moscow where SCI from all over Europe was CURED (according to tabloids and grapevine). I was happy so happy for my friend, but also disappointed. My own request for treatment had been rejected. An operation at C4 was too risky according to the operating Dr.

    I have later learned that the “cure” method practiced by the soviets in the 80'ies was something similar to what Dr Kao is still doing in Ecuador.

    My friend is of course still paralyzed to day. Sigh!

  5. #5
    Senior Member Steve's Avatar
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    Up and down

    These days, I feel good about treatment for us. It looks not too far. I'll probably have different feeling in couple of months. It's always like this, since 1991 when I had my f***** accident.
    Up and down, that's how I feel with all of news we receive about CURE or not CURE.

    Steve

  6. #6
    Senior Member DA's Avatar
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    mk, the mp has been fooling ppl for years. they are very insensitive and indifferent to the sci population.


    my first this maybe a cure came from dr young. this was long before chatting with dr young. i think it was 1996. i was at UNLV on a computer reading the "why-files"; i think that was the name. an interview with dr young was posted. dr young was talking about how they were repairing rats spinal cord with a glue like substance from the chest. AND I QUOTE," curing paralysis will be easier than once believed", said DR YOUNG. i was ready to try. i wrote dr young at NYU, but he never replied. sniff sniff, he broke my heart. seriously, in the article dr young did say" it still not a good time to be paralyzed". i kinda ignored that part.

  7. #7
    Senior Member Rollin Rick's Avatar
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    My doctor at Mount Sinai in New York City told me I would be walking in five years. So that's when I had cure on my mind, I was like, five years I'll be walking, no problem, I can wait it out. That's how I stayed strong mentally, knowing that it's just around the corner. Well, I should have been walking around January 2004. The worst thing, my five-year dream just went down the toilet. I guess I'll just have to start all over again and say, I'll be walking in five more years.....

  8. #8
    Senior Member stlyin moe's Avatar
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    When I got out of the hospital the first thing I did was sit in the living room of the place we were lucky to have and think about what was and what will be.

    My son was 15 months old and puzzled about what that thing was with wheels. He didn't know who I was anymore as I was in the hospital so long he'd forgotten what I represented. I was in a stunned funk you could say. I sat there thinking about all the stuff I'd planned we'd do together, but now would be impossible (practically). Then on the other hand I was grateful just to still be on top of the grass (I wasn't supposed to survive the ordeal). Emboldened with determination from stories I'd heard in the hospital and a few TV shows I'd seen just days before my injury I began to scour the internet.

    I found the Blue Shark people touting their "cure" backed with what I thought were ridiculous results. I was looking at risk vs. reward and they didn't have a single person out of a bunch of 20 that could even move a leg much less walk or regain bladder, bowel or sexual function. Then there was a small matter of $50,0000.00 paid in full in advance before you could get this treatment. I had to laugh when I began to add the numbers. It just didn't add up!

    There've been many headlines about some obscure research facility in bum fok egypt that have made rats legs move again after SCI. Then they're flooded with inquiries to which they ask for contact info so they can send you the summary of their findings. Once you get the summary you're also receiving a request for MONEY so they can continue this "breakthrough" research. Miami is has go to be the best at this gimmick.

    Miami announced they found their triple treatment was 70% percent effective in their last study and trumpeted it all over the world. Then they said they need $2.5 million to take it to human trials. The get the cash (largely from a single philanthropist) and suddenly they're silent about the treatment EVER getting to humans. I recently emailed them asking about their plans now that they're fully funded and their response was; "There are still questions that will need to be answered before we can apply for FDA approval and proceed with clinical trials. We are unable to make predictions regarding how quickly followup studies will take." Isn't that nice. Get the cash first then worry about the ultimate purpose for it. Don't get me wrong, I understand there are procedures and protocols that must be followed, but don't come to me with your hand out until you've got something that's passed the stink test and got the green light. So where does all that cash go if the FDA sinks their boat they've floated? Who knows but rest assured we'll see Miami's hand stretched out again with a tattoo on it that says "pay up sucka."

    I'm not the type that is easily disappointed. There isn't a single bit of news that has come out about any treatment or completed study that has led me to believe I should expect to walk from. I'll get wound up when a treatment consistently gives 70% or better gain. Until then I'm encouraged by research findings and some headlines and continue to tell myself "you never know what tomorrow holds"...
    "Timid men prefer the calm of despotism to the tempestuous sea of liberty." ~ Thomas Jefferson

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