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Thread: Venting: I feel like I will be disappointing my parents if I don't walk again. Anyone feel the same?

  1. #1

    Venting: I feel like I will be disappointing my parents if I don't walk again. Anyone feel the same?

    5 years ago I was under the firm belief that there would be a cure within five years. Well, now it's been more than five years, and I'm just devastated, although I would never allow my parents to see that.

    I used print articles all the time showing them that research was on the way; but now when they asked me if I have read anything good recently; I lie. I tell them I have been busy with my homework lately and haven't had time to research.

    My parents take such good care of me, and I think my dad is under the belief that he was put here on this earth to take care of me and see me walk again before he dies.

    I know it's not my fault and that research takes time, but I can't help but feel I'm letting them both down. The word "cure" is barely even mentioned anymore, but if I give in to the fact that I believe there will be no cure, then I feel like I have lost the battle. On the other hand, I can believe all I want, but the facts speak for themselves.

    It doesn't seem like it's going to happen and that to me is the most frustrating thing in the world. I've would do anything to get better, I would love to participate in a clinical trial. That is, if I knew the research was good, and it took place in a trusted facility. The care I get is unbelievable. Everyday I stand in a standing machine for over an hour, I lift weights, I have a device for my feet that my parents put on for an hour each day, which lowers the swelling in my legs and spreads its circulation throughout my body. I never sit in my chair all day, my father make sure I never sit in my chair for more than eight hours at a time. What I'm not sure of and don't want to talk to them about is... What if there is no cure? Was it all for nothing? I can't come to grips with that question.

    I just wanted to know if there are people out there who feel just like me, maybe this is the wrong forum to post this on, but I posted it on here because I know this forum gets the most views.

  2. #2
    Senior Member medic1's Avatar
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    Hey Dan,
    You are not alone. Although I am SCI I am able to walk some. Yet I still feel like a huge failure when it comes to life and work. I feel like I am so far behind. Trying to concentrate on school and all, but realizeing that all my friends have moved on with there lives. Relationships, marriage,starting families. And here I am, I feel like I am stuck. Waiting for a cure to make me "normal" again. I dont talk much with my parents about my injury or the complications of. They just dont get it. They are old school and both have disabilities themselves but not to the extent of mine. All I ever hear from them is to suck it up! I feel like I need to prove to them that this injury will not stop me from doing anything, and yet it effects every aspect of my life.

  3. #3
    Senior Member BeeBee's Avatar
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    YOU are not disappointing your parents. Your parents are disappointed FOR YOU. As a parent, I would do anything to have my son back as he was. But this, in NO way, means that his inability to walk (etc.) is his fault. It happened to him, and you and you are not responsible. What is your responsibilty is to take advantage of your opportunities. To work hard towards as much independence as possible. And tell them "thank you" every now and then.

  4. #4
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    dann21-

    I'm with you there. I could've sworn there'd be something by now. Now it seems the last 6 years since my injury are going to be as good as it gets. At least in 2000 and 2001 I had hope that I was sure to be valid. Just for some minor relief, even modest treatments. Today I see that we're nowhere close to anything, 4-AP? What a lousy joke. It's not even on market yet, and oral pill for heaven's sake, that does 0 for 99% of the SCI population. I'm sick of scientists blaming Bush all the time to, that's too lame of an excuse. The $$ is not there, the general population has little interest because you've got the few injured people with the loudest voice claiming that a good life can be lived with SCI. Who would want to toil hours away in some lab looking for a treatment that more than half of the community doesn't care for? I'm sick of the responses I get on this site, it's all idle bark and no bite, there's just no proof. Maybe SCI cannot ever be cured, perhaps it's beyond the realm of modern technology, people give billions to help promiscius africans and faggots who don't bother to wear condoms after being warned for 25 years, and here we are with some bullshit therapy in the slowgoing early pre-clinical stages. University prof.'s with e stem cells are too busy playing with themselves, aiming for a tenure in a new developing field. The majority of these jackoffs have no intention to bringing anything to anyone's bedside ever. The so-called progress of the last 5 years is an illusion, the writing on the wall remains the same as we get older and slowly die off. In terms of getting therapies to those of us injured today, this is as close to a hopeless situation as I could ever imagine. There is nothing but a void on the lousy horizon.

    sherman brayton

  5. #5
    Senior Member mk99's Avatar
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    Thanks for the pep talk again Brayton.

  6. #6
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    but mk99, do you agree? I can't find a light at the end of this tunnel.

    sherman brayton

  7. #7
    Senior Member mk99's Avatar
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    No Brayton I don't agree with you at all. If Miami Project can come out with statements like "I'd bet my money on this one for sure" and "5 years is a good target to shoot for" then I'm sure someone else can do it in half the time.

    I've put my money where my mouth is and am helping fund Dr. Huang to agressively pursue combination therapies to exponentially improve his "OEC alone" procedure. All options are on the table and although I have nothing to update so far, it is not unreasonable to add 1 or 2 safe components into his human trial. (maybe Rolipram and db cAMP?)

    If I was waiting for deadbeats with no sense of urgency... well I'd invest in a new cushion.

    I think you're more hopeful than you let on. Why would you spend so much time on a cure forum if progress is at least 50 years away like you say? Are you a masochist?

    You have money. Put it to good use. Talk is cheap and actions speak louder than words.

    By the way: I am as angry, depressed and sexually frustrated as you are. The trick is to channel these feelings into something more useful.

  8. #8
    Senior Member Schmeky's Avatar
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    I know for a fact MK has definitely put his money where his mouth is to speed therapies along. He also helped financially for the Washington Rally.

    Hats off to you MK, need more people like you

    I never hear you complain either. Wow.

  9. #9
    Brayton,

    mk 99 doesn't have an f*cking clue, that fool had TWO experimental surgeries. If there's one occupation mk 99 definitely can't succeed in, that's giving sales. He would fail miserably because no one trusts him. And without trust, there is no faith. And without faith, there is no point in giving him any opportunity to screw all of us over one more time. I don't know about you but I'm not buying what he has to say. He's convinced me that he truly is hopeless.

    mk 99, sell your crap somewhere else. I'm not buying it and I will only say this. FOOL ME ONCE SHAME ON YOU, Fool me twice, shame on me, something to think about.

    Guido

  10. #10
    Senior Member mk99's Avatar
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    Amazing. I'm almost speechless.

    NY Guido, please tell me how my participation in two human trials is trying to sell something or trying to fool people?

    BTW: Attacking "false hope" is A-OK but I'm not sure why you feel the need to personally attack me in this manner. Your words really sting man... for no reason.

    This thread is getting really ugly. Can we please keep it cleaner?

    Dann21, sorry for the thread hijack. I'm done here.

    [This message was edited by mk99 on 04-27-05 at 04:05 PM.]

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