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Thread: New Mobility article about cure seekers

  1. #1
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    New Mobility article about cure seekers

    OK, let's shed all pretenses and get a solid dialogue going about potential cures for SCI. It appears a substantial cure is 10 or more years away. Am I wrong?

    "SCI Cure: So Close, So Far" in the March edition of
    New Mobility magazine is quite thought provoking. As a
    newspaper reporter, I admire its even-handedness and jounalistic
    neutrality.

    As some of you know, I have tentatively planned to
    travel to Ecuador for a Kao procedure in June.

    The NM article says that Kao patients describe him as a
    caring and gifted surgeon. However, it uses
    guarded and cautious language in reference to Kao. It
    says, according to Kao's patients, that he is
    "apparently" a gifted surgeon ... that his typical
    procedure is "supposed" to provide Schwann cell
    bridges for axonal growth.

    The article also refers to Mike Kowalski's recent
    surgery performed by Dr. Henrich Cheng in Taiwan. Mike
    says he has noticed no significant gain and likely
    won't because he should have noted improvements within
    two to three weeks after the surgery.

    The article ends with comments from Bob Yant, a C5-6
    quad from Newport Beach, Calif. He says "the only way
    to get there is through excellent science. And the
    fact of the matter is, the basic science just isn't
    quite there yet."

    I think Yant is a reasonable man. The cure or partial
    cure of SCI will come through science, not through
    religion or alternative fad cures.

    Says Yant: "We're frustrated, but the way to go about
    this isn't to bash the researchers for not having the
    cure yet, or for holding back treatments. AND IT'S NOT
    TO GO TO SOME UNSCRUPULOUS DOCTOR PERFORMING UNPROVEN
    PROCEDURES ON HUMAN SCI PATIENTS SOMEWHERE OUTSIDE THE
    U.S."

    I will turn 51 next month and feel my time is running
    out. That's why I'm leaning toward the Kao procedure.
    Also, I'm encouraged by his patients' accounts. They seem to think the procedure was worth it, although it
    appears most of them have not had significant
    improvements. Some haven't had any. Some say they have, including one guy who says he can now ejaculate. But he was a new SCI and is incomplete so it's hard to tell if he would have gotten this back without the procedure.

    I'm a T 9-10 complete. I don't expect to walk again
    but it would be wonderful to get bowel, bladder and
    sexual function back. Dr. Kao said he could restore
    these functions when he examined me recently.

    What do you think about the New Mobility article? Even
    the most intelligent of us are so desperate for a cure
    that we'll try anything.

    I appreciate your candid responses. This is a vital
    and truth-seeking dialogue. Let's keep it going.

  2. #2
    Senior Member DA's Avatar
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    It appears a substantial cure is 10 or more years away. Am I wrong?

    YES your wrong. even the slow researchers is not going to stretch the cure out 10 years. they are slow, but not that slow.


    when you meet with dr kao, ask him why he hasn't tried using oeg cells.

  3. #3
    Senior Member mk99's Avatar
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    Originally posted by Scribe:

    OK, let's shed all pretenses and get a solid dialogue going about potential cures for SCI. It appears a substantial cure is 10 or more years away. Am I wrong?th-seeking dialogue. Let's keep it going.
    If you are talking about a widely available treatment in US that is fully covered by medical plans/government... then I say YES you are unfortunately correct. At least 10 years.

    If you are talking about stop gap measures that restore SOME function and you will travel overseas and pay cash... I say NO you are wrong. I think within the next 18 months there will be some real viable options for people who have money and are willing to travel. Namely OEG/bone marrow combinations.

    That's my prediction.

  4. #4
    Scribe

    I disagree that it will be 10 yars until a really viable treatment is a available

    I have had my complete T7 paraplegia for nearly 20 years now and, based on what the scientists are saying, for the first time I believe a proper treatment is coming quite soon.

    I haven't read the New Mobility article - where do I find it?

  5. #5

    Maybe 3 years

    Scribe,

    Based on some of the comments by Dr. Young, whom I trust, there will be combination therapies available in three years. Mind you I don't think these will restore full recovery but I feel it will be enough to allow me to hold on until full recovery is available. If therapies are indeed 10 years away then we are being lied to by published reports of successful animal trials.

    Just my opinion and with regards to SCI I'm a pessimist.

    Deb

  6. #6
    Debbie7

    While I understand your pessimism you can't predict how those combination therapies Wise is referring to will affect you personally. You may be one of the lucky ones who just needs a bit of outside intervention to get normal function up and running again - may be it seems like a dream but you never know.

  7. #7

    Combined Therapies

    Christopher,

    I'm a C5/C6 quad. Even though I would love to get it all back I would be elated just to be able to shuffle along with a walker right now. It's funny, not really, but I went out to eat with my boyfriend a couple of weeks ago. A man came in with braces on both legs and crutches. He was using his hips to swing his legs forward. My old AB self would have been moved to tears for the man but being a quad I actually felt envy. Here's to combined therapies that will allow all of us some measure of independence in the not so distant future.

    Deb

  8. #8

    Here Here

    Cheers Deb, you said it!

    Christopher, please do not mistake a mix of desire and despair for a sense of pessimism.
    Debbie is anything but a pessimist. She just wants what she cannot seem to reach just yet.
    Trust me its a common feeling.

  9. #9
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    From animal to human trials

    So far, so good. You guys are giving good input.

    As for the 10-year prediction, this arises out of the frustration of many SCIs, who read about scientific advances in animal trials yet see little attempted in clinical trials.

    I recoverd in the hospital with a physician who is devout Hindu. I've sent him some promising articles about stem cell, bridging and other techniques that have had results in animals.

    His response: "But those are animal trials." He knows how difficult it is to progress from animal to human trials.

    Actually, animal trials start with rats or mice. If there are results, the ante is upped to larger animals like dogs, cats or monkeys. If there's progress here the next step is human trials.

    A friend got me a New Mobility subscription a year ago. It's a must read for SCIs. The articles a well written, well researched and balanced. For example, one issue featured the spiritual views of SCIs, from Joni Erickson (evangelical Christian) to liberal Christian to New Age to agnostics and atheists. Tim Gilmer is the magazine's excellent editor.

    A subscription cost $27.95 a year. Call customer service at 888-850-0344 (Paula Rose, ext. 109) or write to www.newmobility.com.
    You've got to get the just-released March 2002 issue with the cover title "Storming the Castle of Cure." I'm sure NM will send you an issue upon request. You may want to send issues to friends.

    I agree that Dr. Wise Young is a man of enormous integrity and compassion. I'm very grateful for carecure.com.

    Healthy skepticism is a good thing. That's when we think for ourselves and formulate our own opinions. It allows us to recognize things that are out of order. Compare this to faith healers, pyramid-scheme representatives, cults and others who allow no room for doubt.

    Optimism is also good when it's based on good reasoning and common sense. I tend to be negative at times. It's a deeply ingrained defense mechanism to protect me from disappointment. It's irrational but I'm frightened over facing another major letdown. I just observed the second year anniversary of my accident on March 13, 2000.

    By the way, my Hindu friend's spiritual master traveled from India to visit my friend in the hospital. Desperate for a shred of hope, I wheeled as fast as I could to follow his guru into the parking lot as he was leaving. His large contingent of followers were gentle, wonderful people. They stopped him before he got into his car so he could minister to me. He felt my legs and told me things would be OK through an interpreter. I have a long history of seeking answers to life's deeper questions. It's taken me from a devout Christian believer to an agnostic and a lot of reading in between.

    My SCI friend and his wife expected a miracle cure. It didn't happen. As Christopher Reeve says in "Still Me": "Faith alone cannot heal a broken spinal cord."

    Good Lord, I've strayed miles from the subject. The point is is that I believe excellent science, not religious miracles is the answer for SCis.

    But I wanted to share that I'm as vulnerable to shortcuts and unscrupulous doctors as anyone. It stems from a deep wish to at least experience a partial recovery. I agree with Debbie: the thought of walking with canes or even a walker would have produced tears when I was able-bodied. Now this would be almost a miracle.

    I sure do like you guys. Let's keep the dialogue going.

  10. #10
    Senior Member Jeff's Avatar
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    Mary

    In Deb's own words she's a pessimist:

    Just my opinion and with regards to SCI I'm a pessimist.
    I think we all have different ideas of when a "cure" will be available. I agree with MK. I think getting partial return overseas is going to happen relatively soon. And I'm going to be there.

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

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