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Thread: grrrr my beef!!!!

  1. #1
    Senior Member Sh0rty's Avatar
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    grrrr my beef!!!!

    there has been some ranting, and well...its my turn

    I think the thing that bugs me most is when I see people or hear people say "I was not going to accept not walking" or "I worked hard thats why I can walk"
    then whats wrong with me?

    I have done physio, pool theorpy, still do and I try anything and everything I can if I think it will help in any way at all

    and here i sit crying and pulling out my hair because I somehow feel like I failed. Its all good that those people walked away from this, but what about people like me?! who fight thier bodies everyday just hoping that even a toe will wiggle

    What am I doing so wrong? If there is some secret that will allow me out of this damn chair please fill me in cus I do work hard and I have worked hard and know alot of people likewise but we dont walk...so please what am I missing?

    They wouldn't accept this, who said I have?

  2. #2
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    I feel your pain. SCIs differ in levels of severity, but people hear of one success story and are quick to judge others' determination or lack thereof. There is nothing wrong with you, it's the ignorance of those people that don't fully understand our situations. And, sadly, that includes some of our own members Keep working hard to maintain your body when you find the secret - a regenerative treatment.

  3. #3
    Hi Shorty,

    I hope you weren't upset at my post about Karen. I truly don't want others to think that it is JUST trying and excerise, and that anybody can do it. It will only happen if your body is capable of giving it to you.

    I think I read somewhere that you were a complete injury........Karen is incomplete. That makes a huge difference. I know there are some things that Karen cannot do, no matter how hard she tries. Her body just isn't capable of doing it. I assume that is what is happening with your body.

    I really don't want people to be offended, because I realize for the majority of injuries, some things in the body just won't make a recovery.......until that cure comes.

    I know that it annoyed me when people heard about Karen's accident, and said "she'll do fine, she's a fighter". I always told them that if something won't come back, no matter how hard you try, it won't come back. Let's hope that it will all come back for every SCI person some day.

    I know you were interested in trying 4-AP. Were you able to give it a try? I hope so.

    Good Luck, Shorty. I wish you well.

    Darlene

  4. #4
    Shorty

    Not accepting being in the wheelchair and working hard to recover and yet not getting any functional return is indeed a complete bummer.

    I know exactly how you feel - I have not accepted paralysis as a way of life for twenty years, and yet I have lived it. I HATE those stories of how tough someone is, that's why they walked again etc.

    Geeez, I was in great shape when I had my accident so if that is a factor I should have been ok

    The degree of damage to the spinal cord sustained in the accident is the reason you can't walk, not anything to do with your character.

    There are two schools of thought
    a) medical science is going to come up with a cure so I'll keep my life going as well as possible to take the most advantage of the cure
    b) there won't be a cure - this is my life permanently so I'd better make the most of it

  5. #5
    Shorty, it's exactly as Cjo and Karen's Mom said, you can only recover as much as your body is capable. Reconditioning the CNS takes a lot of time, most incompletes who have recovered significantly have worked at it for 5 hours a day, every day for years, depending on the degree of completeness of course. Since your injury is still fairly new, I doubt if you've plateued yet and the return that is being induced by exercise may not be immediately apparent. Don't be discouraged, if nothing else, the exercise you're doing will keep you in shape and make you an ideal candidate for future regenerative therapies.

  6. #6
    Senior Member Sh0rty's Avatar
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    its really good to hear the understanding from people other than people making you feel like you arent trying hard enough.
    I know people dont mean to sound a certain way just sometimes I get frustrated. I want my body to recover like some people I have heard and i will keep in shape so that when a cure does come i'm ready

  7. #7
    Senior Member alan's Avatar
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    Some people are luckier than others. That's th long and short of it. If you're one of the unlucky ones, you can work your ass off, and regain nothing. If you're one of the lucky ones, you can get major return without working so hard. Luck plus hard work gets the most return.

  8. #8
    Senior Member kate's Avatar
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    Also, shorty,

    people who make these kinds of comments are ignorant. It's like asking an AB person to "work really, really hard" so they can fly. Determination is not the issue, and if anyone ever suggests that it is, invite them nicely to come watch your workout.

    Someone once posted on these forums that all he wanted was a fighting chance. That's what the various cure scenarios (oeg, supported ambulation, esc, schwann cells, protein growth factors, etc) will SOON be able to give you. A fighting chance, and then the work you're doing will pay off.

    Be well.

  9. #9
    Senior Member Rick1's Avatar
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    I think most of us are on the same page regarding this issue.
    · Exercise alone will not cure SCI.
    · Exercise induced recovery will occur in varying degrees, based on each individual's unique profile.
    · Exercise will play an integral role in virtually every cure scenario.

    My beef is that, in the face of advancing medical therapies, the (exercise) programs and equipment that will enable people to take advantage of such therapies are beyond the practical and financial reach of most. The biological incompetence rendered by prolonged inactivity will compromise even the most promising therapies.

    Action is the catalyst of true destiny - Imagine the future - Then get to work on it.

  10. #10
    Senior Member Sh0rty's Avatar
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    all good points
    I think if it was hard work and determination alone that did it, there would be basically no one in our situation.

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