Page 10 of 40 FirstFirst 1234567891011121314151617181920 ... LastLast
Results 91 to 100 of 394

Thread: Back on the road to a cure...

  1. #91
    Senior Member alan's Avatar
    Join Date
    Jul 2001
    Location
    Baltimore, MD
    Posts
    6,729
    You sound like a heck of a guy, Vgrafen. I hope you can reach more people like you did that mother you mentioned. People like you are needed. Young and more recently injured people are the most likely to benefit from future treatments, and having settlement dollars to use wisely in the meantime can be a big plus, if those who have it allow it to be.

  2. #92
    Senior Member Jeremy's Avatar
    Join Date
    Jul 2001
    Location
    Canada
    Posts
    588
    Vgrafen - Nice come back on the ho thing , I hope you tipped them off to visit this site.

    "If the wind could blow my troubles away. I'd stand in front of a hurricane."

  3. #93
    Senior Member vgrafen's Avatar
    Join Date
    Sep 2001
    Location
    chico, ca, usa
    Posts
    2,048
    Jeremy and Alan, the thing is, I know that if I'm gonna get my fat ass out of this wheelchaired nightmare one day, it's gonna take a lot of people to do it. We need to have a lot of people on the team doing their best to bring this about, right?

    Society has to be pushed for our cure to come about, and that pushing is our job, every one of us plegics, we can all help push by being the ones to inform the unwashed of what this and similar injuries and diseases is like AND DOES to a person, and what is needed to make us the last generation of chronic plegics. Honey, I wanna be the last group that has to experience this. Anybody down with me?

    The biggest thing any of us can do is to spread the Cure gospel with verve and vigor. By increasing awareness, we increase acceptance of the idea that we SHOULD be cured, and damn soon. You get more and more people mumbling and bitching about it, passing the thought on that putting energy into easing our brother's suffering is the right and prudent thing to do NOW. This has to become an accepted notion, a given, a norm, much like women's rights are now the norm, unquestioned, unblinked at, when just 40 years ago, or less...
    Look, I'm not calling for some jihad or a bunch of flag-waving festering plegics jamming up traffic on Pennsylvania Blvd demanding Bush make SCI Research the number one medical priority... well, maybe that, too, yeah, hell, you know what I mean, getting off our collective asses and when we can, taking the time to inform, the more the better. No waiting, please, for somebody else to do it for us...
    ~
    Set a personal record today on the treadmill: 20 minutes, after 15 yesterday. The key to the LiteGait system is to be absolutely balanced in the harness; off just a little and you labor mightily.

    Sensations in the deep groin lately, spasms still a floppin'. Laying on the stomach more and more regularly, stretching my mid-section. This area has atrophied, and I am tightened, shortened. Gotta loosen up; range of motion, range of motion, range of motion...

    vgrafen

  4. #94
    Senior Member alan's Avatar
    Join Date
    Jul 2001
    Location
    Baltimore, MD
    Posts
    6,729
    In my opinion, society will not be a big help in getting SCI cured. Sure, an occasional celebrity getting unfortunately mangled will bring flashes of extra attention, but then we're pretty much forgotten again by all except fellow SCIs , their families and friends, and the dedicated researchers. SCI just isn't "romantic" - it 's relatively rare, it isn't fatal of itself any more, and it usally doesn't affect cute little children (heck, even conditions that do, like cystic fibrosis, struggle for research dollars.)

    If SCI research over the years would have had the funding of cancer research or even impotence research, chronic SCI likely would have been cured over 20 years ago, and acute before that.

  5. #95
    Alan, no offense but your comments about society and funding, cancer, aids is exactly why we're still in these chairs.

    Don't leave it up to anyone else but yourself. Romantic or not education and awareness will get the job done. Hard work, fundraising, advocacy. Sexy or not most issues/problems are solved with time and MONEY.

    We've all got to do our part.

    Onward and Upward!

  6. #96
    Senior Member chastev8's Avatar
    Join Date
    Mar 2002
    Location
    valdosta ga usa
    Posts
    1,175

    You are correct Alan

    Originally posted by alan:

    but then we're pretty much forgotten again by all except fellow SCIs , their families and friends, and the dedicated researchers.
    But what if we make everyone are our friends? What if all the congress people where our friends? What if all the researchers where our friends? What if we won them over be our dedication, knowledge, or just how cool we are? Is that what you mean by people rembering us. I think its gotta start somewhere-one compadre, then another then another, before long people will be helpin us knock down doors.

  7. #97

    X-RACER

    You could have been there to see it if you had only come up with that 20 bucks!!!!!

    Mary Da Nurse

  8. #98
    Member
    Join Date
    Apr 2002
    Location
    lovelock, nevada
    Posts
    62

    Vgrafen's cd

    I just received the cd VGrafen made. It is called "surviving and overcoming suffering" and we all (six of us here at rehab) just finished listening to it and I think this tape should be sent to every rehabilition clinic everywhere. Its not that he says thinks people haven't heard, its the way he says them that makes so much sense and makes you feel you can survive an injury like spinal cord and still haqve a great life. I cried when I heard the part about watching your friend become paralized in that race, then being there with him and seeing his fmaily turn their back on him. It is sad then that you yourself became paralized years later, but like you said, no one knows tomorrow and what life has in store for us.
    Thank you for sending it to me and if its all right, I' am going to make some copies to give to everyone here. I am going to send a donation to the foundation. It is not much but it will help, right? Caroline my friend here thinks you should do more tapes like this and only talk about one subject on each tape, because she likes your voice and the way you put things. I agree. So keep workling on them, I know you said it is just a demo tape but it is good. I'am not a professional but I think people will really like it. Great job!

    somebody get us out of these chairs!

  9. #99
    Senior Member Leo's Avatar
    Join Date
    Jul 2001
    Location
    Yankton, South Dakota
    Posts
    4,005

    Vgrafen's cd

    Any chance someone could convert the cd to mp3 and make it available for download. If its ok with him. I'd love to hear it.

    Leo

  10. #100
    Senior Member vgrafen's Avatar
    Join Date
    Sep 2001
    Location
    chico, ca, usa
    Posts
    2,048

    The CD

    Wow, this was not expected.

    Ok, Nancy B, Leo, and the emailers:

    Yes, I am in the process of scripting and producing something I can distribute as one of the products of our foundation, tentatively addressing overcoming the suffering near-death injuries and diseases inflict upon patient and family. It/they will be available relatively soon, and probably encompass two or more cd's; still not sure. The version you have, Nancy, is straight off the DAT tape, no edits, just a first run. At the risk of offending you, Nancy, I wish you hadn't said anything, but what the hell...

    Some background: Nancy B, GenRR and BB asked a while back if I had copies of the radio shows I've been doing which they could play for their support and rehab groups, but those haven't been edited yet, so I decided to send what I was working on, a scripted studio piece, and enlist a little feedback before I took the next step. I appreciate the enthusiasm, Nancy et al, but the truth is, that was just a RAW DEMO that I'm already way beyond (yes, just too many issues for one 60 minute cd, so I will break it up and concentrate on only a few subjects per session.) I had hoped I could polish the recordings and THEN make them available, but the cat's out of the bag now, so...

    Folks, I am making a series of recordings which address how one ought to approach 'life after' spinal cord injury specifically and similar debilitating conditions in general. I am employing my own example and background, how I have attacked life before and since, and my philosophy for living. I am going to interview other spinal cord monsters who have thrived despite their suffering, including Danny 'Magoo' Chandler, quad complete and ex-world champ, and Jimmy Button, recently injured Supercross star now on the road to recovery, along with whoever else I can find that's out there doing inspiring work.

    On this subject, I would like to enlist your input here: I have access to a great studio and will be taking the next few months to complete these recordings. If there are any suggested topics you would like addressed, people you feel would be uplifting subjects or whom you'd like to hear how they approach their struggles, let me know, including contact info if possible. The ultimate aim is to perform/record and distribute a series of recordings which will assist my foundation financially while giving those of us lacking the support, confidence, determination or what-have-you a boost to keep up the fight, as well as philosophical insights into the nature of why we suffer as we do. I realize this is a broad and subjective 'subject base' but my experiences have taught me that many of us severely lack the skills to lift themselves from depression and despair without drugs or counseling, poor options in my view.

    So, I cannot yet send out cd's to those who have asked; they are simply not ready. However, I would like to ask any of you interested in recieving and/or contributing to this project to please contact me at vgrafen@hotmail.com; I'll put you on an email alert when the product is ready for, and those who want to get involved in the recordings, from production to distribution, will be hearing from me soon.

    Once ready, I will probably post some selected cuts as samples here and all over the Internet. I hesitate to simply give out the recordings as they become available for free, as they are meant to augment our struggling foundation, and the cost is prohibitive. However, if anyone is in the financial straights I am in and can't afford to pay for/donate to the foundation, I will happily give away the recordings, as my intent is TO HELP AND BE HEARD, any way I can.

    However, to those who have the demo, please hold off on giving away copies. Once I have officially produced and released them, I don't mind what you do with them, but please wait until I give the green light, cool?

    Again, I am seeking input from the CareCure community and no subject or question will be taken lightly. I have a subject outline I'm shaping, but the more 'well-rounded,' the better. Thanks to all who have written for info.
    ~
    I did another 20 minutes on the treadmill yesterday, exhausting myself but the glow well worth it. Spasms really changing lately, deeper, different; hard to describe, but things keep changing.

    vgrafen

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •