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

  1. #61
    Senior Member vgrafen's Avatar
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    More on the issue of credibility

    Just got off the phone with a rehab doc. Man, talk about calcified, negative thinking.

    If anyone recalls, months ago, mkowalski set out to inform rehab clinics about ongoing clinical trials. Thinking it was a good idea, I followed suit and put together a rough list of clinics and sent out my own partial list of trials, etc. and then took off for Brasil. Long story short (we haven't followed up on it much, busy with the foundation and other things), to my surprise, somebody at a Norcal clinic finally took notice. Yet, instead of becoming curious about the trials going on, she wanted to know why I was spreading 'false hope.'

    'False hope?' I ignored her insult, getting back on my horse. ' I'm only trying to give acute patients and their families some choices, like I wish I had.'

    'I understand, but does your doctor know you're doing this?' she asked.

    ' My doctor? What does that have to do with information regarding trials?'

    She replied, 'It's rather unorthodox for a patient to be informing doctors about therapies. I worry that, though your heart is in the right place, you MAY NOT BE TAKEN SERIOUSLY. I think your efforts would be much more effective if they came from an established researcher or doctor.'

    I coulda shot her. Keeping cool, I countered,' So you're telling me you won't even consider the information until it is auhtorized by an MD? Are you aware of these trials, the promising therapies being investigated, like OEGS, IN-1...' and I went on to explain as best I could the procedures being attempted. My words fell on deaf ears. At last, she said, 'Don't you think we in the medical community are fully aware of these trials?'

    'No, I am certain you don't know about them, there's no network between researchers, and all I'm trying to do is spread awareness.'

    'The truth is, none of the therapies you mentioned have demonstrated/

    I interrupted, 'wait a minute, are you telling me you're up to speed with...(mentioning the trials I was aware of) and yet you don't feel they're effective, or what?'

    She took her time. 'We just don't want to spread false hope. It would be better if you waited until the FDA has approved of these trials, or you have an accredited doctor promote these trials. Otherwise, I'm afraid I can't take your claims seriously.'

    My 'claims.' Talk about beating my head against a wall.

    Man, we got some inertia to overcome here if we're ever gonna get traction. I know I said this all before, but sometimes it seems like instead of progress, we're actually losing ground.

    vgrafen

  2. #62

    Credibility

    The key to any change is always in the nurturing and education of the young, because the only thing that teaches an old dog new tricks is TRAUMA and PAIN. You know this because you have lived it...like anything worthwhile it will be collaborative and exhausting...and in the midst you must all be empowered to live well and stay that way.

  3. #63
    Senior Member Jeremy's Avatar
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    vgrafen : I guess you didn't read the fine print on her diploma you know where it says " You are now a God, you know everything, close your mind to all and any means in which people try to change it". I've personally given up on doctors and let nature run its course. It makes you wonder what it will take to wake them up.

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

  4. #64
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    vgrafen

    My apologies to the forum for what was indeed a poor choice of words.
    Sincerely, John R. Meeker

    jrm design art studio

    [This message was edited by meeker on Aug 09, 2002 at 04:54 AM.]

  5. #65

    What will wake them up?---Don't ask...

    My diploma just said...cum laude....NO CRACKS - X-RACER I am way ahead of you....

    Meeker....no it doesn't .....no more than yours

  6. #66
    Senior Member vgrafen's Avatar
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    Yes, I am ridiculous

    Thanks, meeker, and I DO suck, all night if she'll let me...
    ~
    Got back from UC Davis today with a clean MRI report; no syrinxes/cysts. That means the increased whacko spasticity is a result of the Cheng procedure, now running its course within me.

    Spasms, damn strings being pulled, yanked about in my legs. Abdomen afire lately, hell, maybe something's turning on, slow and ugly, maybe not. Not much I can do but to get to rehab tomorrow and chuff along over the treadmill, shoving my hips forward in desperate, sweaty hopes of kick-starting something, anything.

    Never having gone through paralysis, I don't know if I'm recovering, if Cheng has actually given me some cord regeneration or if I'm passing through stages of the condition, even degrading. The 'yanking me forward all the time' is a pain in the ass, but no Baclofen for me, thanks, I want maximum muscle tone, and spasms assist there; no drugs.

    I'm wondering if I don't just tough it out, eventually I may develop some control over the spasticity, which I can only assume is the eventual road to walking.
    ~
    I'd be interested to learn if anyone has made contact with Dr. Cheng and/or is planning on visiting Taiwan for the procedure. I haven't heard much from the insanely-overworked doctor in several months; one hopes he finishes crafting
    an effective stem cell/OEG/shwann cell mix before he drops from exhaustion.

    vgrafen

  7. #67
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    It's something

    If you have increased spasticity and new, though maybe odd, sensation perhaps you are onto something. That would be great for all of us. I mean it when I say, I hope you are onto somthing. I wish you well! You are in that window where anything can happen. Work hard.
    Sincerely, Meeker

    jrm design art studio

  8. #68
    Senior Member vgrafen's Avatar
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    updates

    Geez, the in-box is stuffed today! All sorts of omentum questions. What a Pandora's box I've opened.

    Emails:

    GenRR, I don't 'hate anyone' here on the forum; truthfully, I hate stupidity, deception, arrogance and elitism, and when I encounter that in people, I butt heads. Not that I'm some perfect guy, but I AM asking for clarity and honesty, especially on this forum, where personalities shouldn't matter but fact should. Meeker and Arnie are probably well-intentioned guys who have some agenda I can't yet fully understand. Meeker is a fellow sci sufferer like the rest of us, looking for solutions.

    Yes, BB, you're right, personally I have discounted omental transposition as a singular procedure, though Kao employs it along with other therapies and eventually it may prove effective when combined with OEGs, shwanns, IN-1, et al; only time will tell. Last year I spoke with several patients who had done the omentum with Goldsmith; none of them reported substantial recovery, all but one expressed reservations and various complaints, but none of them have yet to come on the forum to relate their experience, so I have been reluctant to 'tell their tales.' Just this last weekend I re-wrote all of them with this question, but I will not put owrds in their mouths and if they don't want to come on here, what can I do?

    Chu-Chu, keeping in mind what I just said, why don't YOU ask Arnie himself, as I keep doing, for a description of what he does, and what he and Dr. Lima are planning to do? I have tried politely to get him to open up, but for whatever reasons, he chooses to keep things undisclosed and secretive, to our great loss. But I am not 'the forum spokesman,' dear, nor is it 'my job,' I am only trying to find some solutions by asking relevant questions of interest, I hope, to all. Arnie came on here a few weeks ago with some tantalyzing posts but has since decided not to address sincere questions and genuine concerns; again, what can I do? And no, I am not 'angry at the docs at Davis,' nor am I angry at anyone but this damn paralysis. Contrary to what some have said, paralysis remains MY ONLY HATED ENEMY!

    DBH, I, too, am 'waiting with baited breath for the Australia and Portugal OEG results.' If them damn olfactory cells are part of the cure, why wouldn't I want a squirt's worth in my spinal cord? I don't think there is anything any of us plegics can do to accelerate the trial process, however, OTHER THAN GETTING OUT THERE AND FLOODING THE MEDIA WITH AWARENESS.

    Tom, I cannot and will not post your 'impressions' of the so-called omentum controversy. Why not do it yourself? We all would benefit from your insights.
    ~
    Meeker, I'm not sure if what I'm going through as a result of Cheng's procedure shows promise for anyone else, but I am convinced it is an integral step in MY ROAD to getting up from this chair. You, sir, like any of us, are on your own.

    vgrafen

  9. #69
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    Mr. meeker

    You're comments to Vgrafen are uncalled for. I quote you, 'vgrafen,
    could have shot her? You are ridiculous. As to your writing, it just sucks.'

    His writing does not suck, and you mis-read his comment about 'shooting her.' I am sure it was sarcastic, like a lot of his writing here.This man doesn't owe you anything and he has been consistently ethical with you, arnie and the whole subject. It is you that suck and you that have been antagonistic, deceptional and not clear.
    I come to this thread for insights on wat he is going through, in fact everyone in rehab reads this column. A lot of what vgrafen experiences, we also experience. It sounds to me like you are jealous of him, for whatever reasons. That is too bad, but being negative only hurts youre attempt to get support for omentum. You need to back off, apologize and then explain yourself and arnie thoroughly. I am sick of the way you treat people on this forum. Please stop and please contribute something positive.
    Does anyone agree with me? Thank you.
    V, I hope the cellulits is clearing up. Are you elevating your foot? I had a lot of trouble doing this consitently, and it cost me. Learn form my mistakes, ok?

    somebody get us out of these chairs!

  10. #70

    Hey V

    I passed!!!!!!

    OOPS GOTTO GO----Vacation you know....

    GONZO FOR NOW....

    Mary THE NURSE

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