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Thread: What can I realistically expect?

  1. #1

    What can I realistically expect?

    I am a c5/6. 23 years old. 4 years post.

    Could I realistically expect anything coming out to help me regain function in the future? If someday, I could just get my hand use back, it would be enough cure for me. But I am very skeptical.....I have my doubts that anything will help the people like me who are already injured.

    I was very hopeful when I was first injured, but it seems to fade each year....

  2. #2
    Senior Member Tara's Avatar
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    Don't ever lose hope that your condition will change!!! If I lost hope I don't know if I could go on....

  3. #3
    M.Wolverine:

    I think something will happen in ten years and you will be about 34 years old but I don't know what will happen. I also believe that most researchers would not dispute that there will be something for people with spinal cord injuries in a decade.

    PN

  4. #4

    MWolverine

    Believe it or not, you are still young! I definitely think you're going to see some great research coming out to help you! Your injury is so new still, you ought to get involved at a college gym or therapy or an outside gym somewhere. You're living anyway, you might as well aim your body in the healthiest direction that you can and have time for.

    I'm so old I figure by the time the cure gets here I'll be ready for the geriatric ward anyway, so I have an excuse to be lazy, ha ha.

    Seriously, I went to Gold's Gym yesterday and they are going to come to therapy with me to see how best they can help. I'm gonna grow triceps, I'm so jazzed! See there? Even I'M starting to take this 'exercise retrains paths' philosophy or research serious.

    Like I said, you only get one life, live it! Don't waste it sitting in a corner worrying about it, just live it! [Remind me I said that when I get down, please. LOL]

    Best wishes,
    Cindy G

  5. #5
    Senior Member Jeff's Avatar
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    MW

    At C5-6 and having your sights set only on a minimum of better hand function I'm sure you won't be disappointed. I regained a little extension of the fingers in my right hand a year after injury [I'm C6] and it's unbelievable the difference it makes. I often fool people who don't realize I have limitations to my hands at all. I don't have flexion in my fingers but with tenodesis I can literally reach out and grab things. I can't do that at all with my left hand. I think you're just two levels away from dramatically improved hand function.

    The even better news is that only 10% restoration of the cord is enough to reward us with bowel/bladder/sex and possibly even ambulation. It's not a pipe dream. The plasticity of the CNS means that even minimal restoration of the cord will result in big improvements for us.

    Indeed we could watch from the sidelines as animal after animal is cured, followed by three phases of human trials. It all could elapse over a decade of time. But I think there will be treatments available to us abroad before then for those willing to invest the time/money/energy in obtaining them.

    Stay up on research. Save money for a treatment. Investigate participating in clinical trials. Be ready. The cure is happening. Whatever you get back will be well worth it.

    ~See you at the SCIWire-used-to-be-paralyzed Reunion ~

  6. #6
    Hi Brent - I just looked at your profile and then entered your web site. WOW! Fantastic! You have such a great attitude and are so motivated. I can't help but admire you for all that. I can't imagine how you managed to start University the day you got out of the Hospital! Have you thought about giving Motivational Speechs? I am sure you would be excellent at it.

    I guess I could relate to your situation because my daughter (T12 incomplete) was an athlete too (horses - 3 day eventing) when she was injured. She, like you, was also very positive and determined. I know it gets very discouraging sometimes but I am really excited and encouraged by all the research and cure possibilities that are going on right now. Something will work! I know it will! We must all hang on to that hope, for I know it will come. Good Luck to you and thank you for the "glimpse" into your life through your web site.
    Sincerely,
    Darlene

  7. #7
    MWolverine,

    For what it is worth, I believe that there will be therapies that will restore function to people with spinal cord injury. I think the therapies will come earlier than 10 years. It will come even sooner if the community gets its act together instead of just sitting back and waiting for therapies to come.

    Wise.

  8. #8
    Senior Member DA's Avatar
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    gets its act together

    what is your definition of getting its act together?

    if a child is abused, we don't expect this child to just
    become normal without counceling. the same for the sci
    community. the system has mentallty abuse us. it continue
    to do so to this day. even members of this forum with all
    this information continue to suffer from their brainwashing.
    so telling the sci community to get its act together is
    like telling a dog to train itself. few acceptions like will
    and sue, but the majority is too well mentally beaten down
    to do much of anything. it will be at least 20 years post cure
    before some start to return to normal.

  9. #9
    DA, you are not going to like what I am going to say below.

    The SCI community is currently in an enviable position of having a person like Christopher Reeve fighting for research, a press that is very interested in progress in the field, and scientists who are working hard for curative therapies. We have been poised for that great leap forward for several years but the funding never materialized. The community just never rallied to support the research cause. Most people are sitting around waiting for the cure to come to them or denying that it is important to them.

    Both the problem and the solution are clear and yet, for some reason, the community has turned a blind eye. Without a significant increase in government, industry, and private funding, this field cannot take that great leap forward that everybody would like to see. Scientists can only do so much. This can only be done by the community. It is sad. When Christopher Reeve stepped up to the plate and made his best swing, there were vocal hecklers in the stand.

    Perhaps the best way to illustrate is to compare the SCI and MS communities. The fields are similar. There are perhaps 330,000 people with MS in the country. I think that there are probably more people with SCI if we included those who are partial injuries and recovered. The demography of the two populations is fairly similar in terms of economics and distribution. They have a bulletin board (http://www.msworld.org/cgi-bin/wsmbb/wsmbb.cgi?config) with over 2800 members. People with SCI and MS have similar problems.

    Why do you think the MS field has over 47 clinical trials that are recruiting patients right now (http://www.nationalmssociety.org/Res...recruiting.asp)? How did the National MS Society achieve a budget of over $40 million per year? Why they are getting twice as much money as SCI research from NIH. Why do over 100 pharmaceutical and biotechnology companies list MS in their mission statements? The MS community has been doing its job of raising money, focussing on research, supporting its scientists, lobbying the government, and advocating their cause.

    Look at the NMSS web site http://www.nmss.org/ and feel the difference. Do you see any of them attacking their scientists, anybody opposing animal research, anybody saying that they are going to go overseas for their therapies, or worse testifying against each other in debates on stem cells? Do you see any of them asking if and when a cure is coming? Do you ever see a person with MS attacking another person with MS? Do you see isolated MS groups disdaining collaboration with others and insisting on funding its own version of a cure?

    The SCI community simply doesn't have its act together. Please let there be no misunderstanding. I am not criticizing our CareCure Group here, of which I am very proud. I am pointing out that the SCI Community simply has not gotten its act together.

    Wise.

    [This message was edited by Wise Young on May 26, 2002 at 04:05 PM.]

  10. #10
    Senior Member
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    Counsel

    DA, in all honesty, I think the only counselor that will help us is a PHD biomedical research scientist...because it's the counselors who have been trying to teach me complacency from the day I got hurt.

    Cindy, I started working with a trainer at a Gold's Gym too ... He has helped me ALOT. He showed me how to do exercises to keep my upper body...shoulders healthy. He analyzed the way I push my racing wheelchair, and showed me how to do exercises to be better at that. And he's researching ways I can continue to work on returning muscles. (He even wanted to give me advice on steroids, but I said...SORRY, not into pills.)

    Eric Texley

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