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Thread: New Mobility Article

  1. #1
    Senior Member mk99's Avatar
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    Jul 2001
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    New Mobility Article

    I was originally asked not to post this article. It's now been quite a few months since the New Mobility Issue was on sale and I don't think I'd be taking away any sales... so here is the original SCI Cure article:

    SCI Cure: So Close, So Far
    By Sam Maddox

    Will Ambler, a T12-L1 para from Solvang, Calif., crashed a motorcycle at 100 miles per hour nine years ago and immediately started hearing what most people with cord trauma heard: get used to it. But Ambler, 33, is what the medical people call an "aggressive patient." He stays on top of research and understands enough to talk the talk. He gets in peoples' faces and has no tolerance for the "maybe someday" party line. He wants a treatment. Right now.
    Three years ago, convinced that a prominent University of California, San Diego, scientist was sandbagging his data, Ambler threatened legal action. He claimed that Mark Tuszynski's gene therapy experiments in rats, which showed some success at restoring function after spinal cord injury, and Tuszynski's then-proposed human trials for Alzheimer's disease, were reason enough to do the same to him. Pronto.
    "The time has passed for making excuses," said Ambler. He volunteered to be first in line and promised to indemnify all parties if he didn't get better, or if he got worse. "It's time to move forward. Failure, even death, is progress," he said. "At least we'd know what not to do."
    Ambler based his case on his notion of a physician's responsibility to treat. He pointed out that public money paid for research, therefore results should be shared with the public. He tried another angle, claiming the Food and Drug Administration Modernization Act of 1997 encouraged "expanded access" to investigational therapies in "emergency situations" such as his. He also said that Tuszynski's refusal to move to human spinal cord injury trials was tantamount to fraud, by nature of "concealment."
    Ambler convinced his congresswoman, U.S. Rep. Lois Capps, to write a letter to the dean of UCSD's school of medicine on his behalf. He also got the attention of Governor Gray Davis' office. The university's response noted that the research is "not ready for the human clinical trials of which he [Ambler] is so desirous."
    Mild-mannered Tuszynski retreated into his work and made but one public statement about the Ambler affair, to an Internet bulletin board frequented by people looking for SCI cures. Too soon, too risky-the animal results may not translate to a safe therapy, could lead to pain, could make people worse, he said.
    In a recent interview, Tuszynski said he understands the frustration. "People who have suffered SCI hear of scientific advances yet see precious little if anything being attempted in clinical trials. If an experimental therapy is successful in promoting functional recovery after SCI in rats or mice, then ideally it should be tested in larger animals, such as dogs, cats or monkeys. The legitimate wishes of patients must be balanced against the physician's ethical obligation to do no harm."
    Eventually, Ambler and a few others who joined him decided they couldn't afford to fight the state system. "It was going to cost $500,000 to fight it," says Paul Nussbaum, a C2 quad from Los Angeles. "We had five attorneys in the loop. There was no way we could afford it. We all left empty-handed."
    Still, word had spread of Ambler's legal gambit; the research community was aghast. How dare a layperson presume to know when research is ready to move from lab to clinic? How can scientists be expected to be productive when defending their careers against a consumer coup d'etat?

    Crashing the Research Party
    However provocative, Ambler has raised a very interesting question, one that the research community has only begun to fully grasp: When exactly is the right time to pull the trigger on human therapy? Translational research, as scientists describe the move from lab to clinic, is being debated at the National Institutes of Health. A loose coalition of SCI centers hopes to form a consensus on the safety and efficacy, and timing, of the most promising treatment strategies (see sidebar, "Translations: The New NINDS Mantra," page 36).
    Meanwhile, Ambler remains convinced that Tuszynski is holding back, and he's more than ever certain the lack of urgency in biomedical research will keep him paralyzed. So Ambler has leaped into the research game himself-skipping the politics of public money, the red tape of grant-getting, or the scrutiny of peer review. Using funds he raised and borrowed, Ambler signed a $260,000 contract with Los Angeles neurosurgeon Michal Levesque to carry out animal experiments using stem cells in a chronic injury model. If the animal work succeeds, they plan to move to human trials.
    Levesque, based at Cedars-Sinai Health System in Los Angeles, made headlines three years ago when he harvested stem cells from the brain of a man with Parkinson's disease and transplanted them into a part of his brain ravaged by the disease. The patient got better and continues today to have much-improved quality of life, Levesque said.
    That trial was backed in part by the Spinal Cord Society, which along with the public relations people from Cedars predicted that an "SCI protocol" based on the same stem cell work would be forthcoming. It never happened; in fact, the Parkinson's trial, encouraging as it might be, has yet to treat a second patient. The FDA OK'd the Parkinson's work but never gave the green light to jump to the far more complicated problem of SCI. Progress was also impeded by intellectual property issues between the hospital, research team and funding source.
    "I think it's very commendable what Will is doing," says Levesque. "It shows how determined he is, and it shows the understanding he has of molecular neurobiology. I'm happy to work with him-he puts his money where his mouth is."
    According to Levesque, the animal data will attempt to demonstrate that stem cells from one's own body-so-called autologous cells-can become nerve cells and replace those lost after spinal cord trauma. "We are hoping to guide the stem cells to their proper fate, so they become what we want them to become, then interact locally with neural circuits."
    Levesque has formed the Foundation for Neural Repair, hoping Ambler's money will seed greater giving. Plenty more will be needed if clinical trials are to follow, he says.
    Levesque won't have to go far for his first volunteer. Ambler's in the front of the line. "We may not achieve a magic bullet," Ambler says. "But if we can show there's some return and prove it in humans, others will jump in and there will be an avalanche of work. This trial is designed for humans, not to advance anyone's career."

    If Not Now, When?
    Spinal cord injury research is complex and fascinating; viewed up close, the field is moving with great speed. But the greater the optimism, it seems, the greater the frustration. In what is now truly a global effort, many more scientists have committed their careers to solving the paralysis puzzle. Almost every week another tantalizing animal experiment restores function, emboldens the field and sends a mixed message of hope and frustration to the community. Several clinical trials are ongoing and more are planned.
    For years all the news in SCI research targeted acute injuries, with treatments to protect surviving nerves and arrest the damage that follows initial cord trauma. There's still only one drug, methylprednisolone, approved to treat early SCI; given in the first eight hours after injury, it offers a modest-about 12 percent-improvement in function. We'll see other drugs come to trial in coming months to promote nerve cell survival, including compounds to stop inflammation and release of cell toxins, prevent cell suicide (apoptosis) and shore up the defense for cells under fire. The Miami Project to Cure Paralysis says it is taking both hypothermia (cooling the cord) and a drug called IL-10 to the clinic to treat acute injury. Eventually, various drugs may be given at different times to deal with the changing cascade of destruction.
    In what's called the sub-acute area-treatments given in the first two or three weeks post-injury-at least three clinical trials are underway: immune system (activated macrophage) manipulation, funded by Proneuron Biotechnology Ltd., based on research from Israel; low-voltage currents placed at the injury site, at the University of Indiana and in Ireland; and growth factor therapy with a compound called AIT-082 (from NeoTherapeutics in Irvine, Calif.), which the company says induces nervous system cells to produce growth factors.
    It's too early to tell much about these trials, but the Israel study got media attention that was hard to avoid. Melissa Holley, a young woman from Colorado, was the first to get the treatment: White blood cells called macrophages from her own body were transplanted to the area of her injury; the scientists think the cells will kick-start repair mechanisms that otherwise cannot occur. She later went on national television to say she regained bladder control plus significant function in her legs. One of her doctors in Israel said he hopes she'll walk again. Was it the therapy or would she have gotten better anyway? No one can say. Meanwhile, Proneuron has expanded the trial to a clinic in Belgium and hopes to bring it to the U.S. soon. Craig Hospital near Denver has had discussions with Proneuron to initiate a trial there.

    No Chronic Tonic
    Christopher Reeve turns 50 this year, and didn't he say six years ago that he'd like to be on his feet by then? No doubt he feels the frustration; he personally raised millions of dollars for the cure. But unless he wants to jump ahead of rigorous science, the kind funded by his foundation, it's not likely. There isn't yet a therapy available in this country-now or on the immediate clinical trial horizon-that has been shown to promote recovery after chronic paralysis. And the most likely scenario will deal with lower-risk paraplegics long before they touch a quad on a vent.
    Last year a phase I (safety) trial got underway to treat people with chronic injuries. Fetal tissue from pigs was transplanted into the cords of several people in Albany, N.Y., and St. Louis. Diacrin, the sponsor company, thinks the cells may partially reestablish neural pathways.
    Using porcine cells avoids the ethical quagmire of human fetal tissue. Does it work? Too early to tell. A paraplegic who goes by the name Bilby posted on that he was part of the trial. His last report indicated "no change." Meanwhile, the trial has not had an easy time recruiting people-the risk remains of retroviral infection from transpecies cell exchange. HIV, for example, was thought to live harmlessly in green monkeys, becoming deadly once it jumped to humans. Participants in the Diacrin trial must agree to never have children and must undergo an autopsy no matter their cause of death.
    The problem with chronic SCI is not just tweaking cells or adding a few new ones. The most daunting task is to regrow axons (some as long as two feet), getting them through the hostile environment of the cord, hooking them up again to sensor and muscle. Regeneration has not been proven in larger animals.
    A lot of folks are not waiting for the science to mature. Dozens have gone to Ecuador for a surgical procedure by Taiwanese-born Carl Kao, a neurosurgeon who has had numerous run-ins with U.S. medical authorities for "experimental procedures." Kao's typical procedure decompresses and untethers the cord and implants parts of a patient's sural nerve, which is taken from near the ankle-it is supposed to provide Schwann cell bridges for axonal growth. He prescribes a vigorous exercise program and a regimen of drugs, including 4-AP and testosterone.
    Kao doesn't publish his results, so the evidence is anecdotal. From interviews with many Kao patients, and from board reports, Kao is apparently a gifted surgeon and caring physician. Some report gains of sensation or reduced pain. None regretted the $30,000 adventure to South America.
    People are also going overseas for experimental surgeries. Mike Kowalski, 27, a fairly recent T4 complete para from Toronto, went to Henrich Cheng's clinic in Taiwan last fall for surgery to untether his cord and get a "cocktail" of growth factors intended to boost his function and perhaps scaffold nerve growth. Cheng is well-known to the research community. He and a team from Sweden's Karolinska Institute co-authored a much-cited research paper in 1999 that showed functional regeneration of axons across an injury site in a rat model using nerve grafts stabilized with fibrin glue.
    "I'm a stubborn person who does not accept that nothing can be done for this condition," Kowalski says. "The decision was easy. There is nothing being done here and I can't sit on my ass waiting for 10 years for something to finally reach humans with chronic injury." Kowalski says he spent about $10,000 on the treatment and getting to Taipei.
    His gamble may not have panned out. "I have not noticed any significant changes and probably will not," he says. "Dr. Cheng told me it can take six to 12 months for improvements to come, but reading between the lines it was obvious that if I didn't get any improvement within two to three weeks, I probably wouldn't get anything." His "mental satisfaction" balances his disappointment. "I actually tried to do something about the problem. That is more than anyone else that I know of."
    Kowalski's looking for "stronger stuff" now, and may go to Russia for fetal tissue transplants that could not occur, by law, in this country. Is he desperate, well-motivated, or just fearless? "People really seem to believe the shit that is fed to them about how there is no solution, no hope," he says. "Some will probably spend the rest of their lives in a wheelchair because of their pathetic attitudes."

    Memo to Scientists: Paralysis Bites
    Each year an online character with the handle of DA posts a poll asking fellow "cure homies" when they think the SCI fix will come. This year he was surprised to see a decline in optimism, despite a prodigious amount of positive research. Almost as many voted for "10 years to never" as did "three to five years." DA remains upbeat-barely. His take is that sufficient research is already in the books to effect meaningful therapies for people with chronic injuries, if only researchers would wake up.
    DA is officially Chris Lewis, a C4-5 quad from Beaumont, Texas, who was hurt in a football game 15 years ago. For years he's been a regular cure curmudgeon: Too much wasted money on buildings, too many unmotivated scientists with too little gumption to move to the clinic, too many happily paralyzed people holding progress back. He's enlivened and infuriated a series of Internet bulletin boards from Cure Paralysis Now to Spinewire to his latest home at www.sci Also known as CareCure, this most recent board is run from Rutgers University by Wise Young, M.D., Ph.D., a prominent SCI researcher and tireless promoter of hope within the boggling arcana of restorative neuroscience. Young is one scientist who appreciates the urgency, albeit occasionally with tongue in cheek: He once named a lab rat in honor of DA.
    "People are losing patience," says Lewis. "SCI researchers make a breakthrough and sit around like the job is done. We need a brave super-researcher to come along and knock down the dam of complacency that is slowing down progress."
    Bob Yant, a C5-6 quad from Newport Beach, Calif., and a board member of CRPF, takes a more practical view. "If we can be assured that some treatment would restore breathing to respirator quads or allow quads to regain use of their hands," he says, "we should use those technologies immediately. Growing axons for long distances to restore ambulation is going to be more difficult. Only when we can be assured that a particular treatment or therapy really improves function should we apply it widely. A failure in this realm can doom a therapy and return us to the days of pessimism about a cure, setting the whole SCI research field back several years."
    Yant says it's still too soon to go under the knife, and unfair to blame researchers for the pace of progress. "We're all frustrated," he says. "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. 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."

    Solving the Mystery

    Luba Vikhanski's recent book In Search of the Lost Cord: Solving the Mystery of Spinal Cord Regeneration, details the complex science of restoring function after spinal trauma.
    SM: What got you started on this topic?
    LV: I was intrigued by the turnaround toward hope-what prompted so many scientists to go into what was once a dead-end field.
    SM: When you started, what was your perception of progress toward 'cure,' and has that view changed?
    LV: I had no idea SCI research was such a hot field. And it kept getting hotter. When I did the last round of follow-up interviews in 2001, I was surprised how many scientists said they were hoping to take their research to clinical trials. These same people made no mention of human experiments two years earlier. Now, even the "maybe" scientists are working so hard that it's difficult to imagine that deep down they're not hoping for a major breakthrough.
    SM: There is enthusiasm in the labs. Does this translate to clinicians?
    LV: Scientists are enthusiastic because they see nerve fibers grow. Clinicians see a great deal of permanent damage after SCI, so they tend to be more skeptical.
    SM: And how big an effect has Christopher Reeve had?
    LV: Enormous. His influence is felt all over the world. In all eight countries where I conducted research, people wanted to know if I was going to interview the "Superman" (I didn't).
    SM: I hear a lot of complaining that there's a conspiracy to keep people paralyzed, that researchers are more concerned about career than cure.
    LV: I'm sure the first scientist to reverse paralysis will be lavished with so much glory, awards, and funds for more research, that to me it's insane to imagine somebody willingly foregoing such honors. Scientists are not "threatened" by clinical success. Their initial motivation is scientific curiosity, not a cure. But when they obtain clinically relevant results, career and cure ambitions often merge: Seeing their therapy applied in people can be rewarding. Plus, scientists are no less capable of compassion than other humans. I write about a scientist who went into SCI research after a college friend was paralyzed in a diving accident. I quote another scientist who said he "saw the light" when he was asked to address a gathering of 500 people in wheelchairs. After that experience, he knew "that now I'm in this business for a different reason."
    SM: Here's a tough one. What are the hottest leads in the field?
    LV: I honestly hesitate to say. I had nightmares about a clinical breakthrough happening in an area I'd fail to cover, and then the book would instantly become obsolete. If there is one area that is hugely underestimated, in my mind, it is the possibility of teaching the spinal cord to walk with the help of treadmill training after a partial injury or-hopefully one day-after regeneration. One scientist said that without such training, "you may have 100 percent regeneration and not be able to walk."

    Where the Money Goes

    Most of the money spent on spinal cord injury and disease research comes from the government, with some of that money being passed along to different nonprofits before ending up in the lab. The National Institutes of Health is one of the big spenders of your medical tax dollars, with approximately $55.6 million spent during fiscal year 2000 by different centers and institutes that focus on spinal cord injury and disease research, says Sylvia Bennett of NIH's budget office.
    Another big spender is the Veterans Administration, which devotes $371 million of its congressional appropriation to research, with a substantial portion of that money going to SCI/D-related projects and research. SCI/D projects focus on solutions for improving mobility; amelioration or control of spasticity or incontinence; enhancements of neuromuscular function; reduction of attendant care requirements; and improvements of ventilation/pulmonary function as well as of general health maintenance. The VA also researches advanced designs for wheelchairs, environmental control devices, robotic assistance, and transference.
    Some ballpark figures from Dr. Mindy Aisen, chief physician of the VA's office of research and development: about $40 million goes to VA's medical research, which is the basic science division looking at such things as regeneration. Approximately $13 million is devoted to areas of care, medical complications, assistive technology and curative methods such as treadmill work; and another $10 million for health services research, mostly for best practices programs, which study post-injury care to determine what works best for medical issues from bladder care to bed sores.
    The National Institute of Neurological Disorders and Stroke spent a little over $38 million this past year. Funded projects vary annually depending on what's showing the most promise; currently it's inflammation responses, cell death, stimulation of axonal growth and myelin factors, according to Dr. Naomi Kleitman, NINDS program director of repair and plasticity. Smaller amounts go to studies in spasticity, pain, bowel and bladder function, gene therapy and cell transplantation, and grants designed to bring new people into the field of SCI/D. Because of similarities between the optic nerve and the spinal cord during development and following injury, the National Eye Institute spent close to $6 million dollars on SCI/D-related research this past fiscal year.
    The National Institute of Disability Rehabilitation Research is mostly about care and quality of life, rather than cure. NIDRR conducts comprehensive, coordinated research and related activities in rehabilitation, inclusion, employment, and independent living. According to Joel Mykelbust, director of policy, planning, budget and evaluation division of NIDRR, approximately $10 million to $15 million annually is spent on SCI/D-related projects, including the model systems rehabilitation centers, several research and rehabilitation training centers and other rehab projects throughout the country. The Institute shifted its focus to place a greater emphasis upon research during the 2000-2005 funding cycle. It sees part of its mission as taking medical breakthroughs and applying them to everyday life. Other funding areas include studies in long-term morbidity/mortality, secondary injuries and pain, along with some clinical trial work.
    In general, the Miami Project to Cure Paralysis, at the University of Miami School of Medicine, has an annual operating budget of around $13 million. The Miami Project focuses on basic science research-including Schwann cells, stem cells, regeneration, cell transplantation and neuroprotection work (including treatments with growth factors, moderate lowering of body temperature, and modulating inflammation)-in experimental models. The Miami Project also has a clinical component devoted to gait training, suspension walking systems, circuit training and other programs that apply the research directly to paralyzed individuals. Approximately 78 percent of the research budget is funneled into the labs for basic science research, with the other 22 percent devoted to clinical projects, according to Scott Roy, director of communications. Fifty-one percent of the funding comes from sponsored funding, which includes grants and contracts from agencies such as NIH, with the remainder coming from corporate and individual donors.
    The Christopher Reeve Paralysis Foundation awarded around $5 million in 42 individual grants during 2001, up about 10 percent from 2000. The Foundation supports basic science projects that look at regeneration, axon guidance, bridging, immune responses and neuroprotection involving the spinal cord. Other projects, such as gait and treadmill walking studies, look at rehabilitation strategies and improving function. The Foundation is also expanding its Quality of Life and Health Promotion grant program, which spent around $700,000 last year in programs for individuals living with disabilities and their families. A new initiative focuses on health promotion activities. Funding is spent in the form of $5,000 to $25,000 grants for, among other things, dormitory hospital beds, service dog training, support groups, outdoor programs, adaptive sports and advocacy campaigns.

    Translation: The New NINDS Mantra

    Translation-moving from lab to clinic-has become a "mantra" at the National Institute of Neurological Disorders and Stroke, says Naomi Kleitman, program director for repair and plasticity.
    It's a cautious mantra, though. "We support going to clinical applications. But carefully, with peer review," said Kleitman. "We're asking, 'Do we need another level of review? Are we answering the questions we need to know?'"
    Kleitman hears it all the time-the field isn't going fast enough. "In some ways," she says, "we may be going faster than we should. People may want to go ahead to trial after news breaks about a single published research paper. The work should at least be replicated in another lab and done in a larger animal that might better reflect human response. And we should have some convincing evidence of how the treatment works."
    Kleitman, who came to NINDS from the Miami Project to Cure Paralysis, hears the frustration, too. "Some people on Internet bulletin boards don't have the full information about what's going on. If people don't have patience for the details, that makes it very hard to know what to say about research progress that's going to be both accurate and sufficient for them."

    What's the Next Step?
    Research has progressed to the point that therapies should be available in coming years. The era of "doable therapeutics" is just ahead. The most likely treatments will evolve from these areas of study:
    n Promoting disconnected axons to grow and guiding their path-by blocking inhibitors, overcoming scar formation, adding signal molecules along a favorable "scaffold." Treatment may utilize antibodies to inhibitors, scar-reducing agents, or addition of agents to direct axons to targets.
    n Trophic (growth) factors promote nerve growth; one way to introduce them is by gene therapy-transplanted cells are programmed to excrete specific factors.
    n Bridging the gap in the cord, using peripheral nerve grafts, Schwann cells, olfactory ensheathing glia, fetal spinal cord cells, or combinations with trophic factors.
    n Cellular replacement: New cells might come from embryonic tissue, stem/progenitor cells from one's own body, Schwann cells, olfactory ensheathing glia. The new cells may rewire the cord or provide nutrients for surviving cells.
    n Nerve boosting: Phase III trials for 4-AP are finally on. The main focus is on spasticity but also sexual, bladder and bowel function.

    Other trials that might occur:
    n Inosine is a naturally occurring molecule that promotes axon sprouting.
    n Copaxone-used clinically in MS-appears to block axon inhibition.
    n Rollipram-in trial for MS-encourages axon growth.
    n M1, a monoclonal antibody, appears to remyelinate axons (no myelin, no conduction).
    n Chondroitinase ABC promotes recovery in rats by neutralizing inhibitors.
    n C3 inactivates inhibitory substrates, promotes recovery.
    n Neurogel, a polymer that provides a support surface for regenerating axons.

    According to Kleitman, a loosely formed alliance hopes to address SCI translation, including:
    n The Miami Project to Cure Paralysis, University of Miami School of Medicine
    n PVA/EPVA Yale Center for Neuroscience and Regeneration Research
    n Christopher Reeve Paralysis Foundation Consortium-nine labs
    n Collaboration on Repair Discoveries, University of British Columbia
    n Reeve-Irvine Spinal Cord Injury Research Center, University of California, Irvine
    n University of Florida Brain Institute
    n W. M. Keck Center for Collaborative Neuroscience and the Spinal Cord Injury Project
    n Spinal Cord Research Centre at the University of Manitoba
    n Kentucky Spinal Cord Injury Research Center, University of Louisville
    n Spinal Cord Injury Program, Washington University School of Medicine in St. Louis
    n University of Kentucky Spinal Cord and Brain Injury Research Center
    n Mission Connect, The Institute for Rehabilitation and Research, Houston
    n Model Systems Spinal Cord Injury Hospitals (16 centers) n

  2. #2
    Senior Member DA's Avatar
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    Jul 2001
    beaumont tx usa
    the best part of this article is about me. you guys can skip the rest.

  3. #3
    Senior Member
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    Two to three weeks?

    Mike...if you're out there listening...

    Why did you expect the growth factors you got in Taiwan to help you in "two to three weeks?" That seems a very unreasonable timeframe to me to expect ANY treatment to work. I could see a year.

    Eric Texley

  4. #4
    Senior Member DA's Avatar
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    beaumont tx usa
    eric full body benefit in 1 year. a noticable change in a couple
    of weeks.

  5. #5


    Thanks for the post.

    Onward and Upward!

  6. #6
    Senior Member mk99's Avatar
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    "Why did you expect the growth factors you got in Taiwan to help you in "two to three weeks?" That seems a very unreasonable timeframe to me to expect ANY treatment to work. I could see a year."

    As DA said, I should have noticed SOMETHING after 2 to 3 weeks. Tingling, zapping, weird spasms, etc.... I did not really notice anything like that. People who regain substantial function 6-12 months later start with these kind of signals right after surgery.

    However I am now more convinced than ever that I have regained some sensation of when my bladder is full. Also the last diarrhea attack that I had I also had VERY strong warning signs that I have never had before which gave me time to get to the can. If this is all that I get out of the surgery, it was worth it. No more 3 hour cleanups!

    Please let me clarify the following quote "Some will probably spend the rest of their lives in a wheelchair because of their pathetic attitudes."

    Before Blue jumps down my throat again for being fat & lazy, this quote was somewhat taken out of context. I have nothing but respect for anyone who has been injured a long time and has put their life back together. What I meant by this is "Some people who KNOW better and COULD be doing some exercise or at least stop abusing themselves with smoking/drugs/alcohol/UTIs/kidney failure, etc have completely swallowed the bullshit about no hope and have given up. They are slowly killing themselves. That is in my opinion a sad attitude and may mean that they may not in fact walk again. They'll possibly be dead before a "cure" arrives.

  7. #7
    Senior Member rdf's Avatar
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    Someplace between Nowhere and Goodbye
    Will and another friend of mine, Leroy, met in solvang yesterday with Dr. Levesque and others. They talked of the method of injury they would use on the rats, among other things. Yes, they will simulate chronic contusion injuries in the rats. I couldn't make it due to work, but I talked to Leroy and Will today, and what Will is doing is super. The doctors are driven and committed.

    This proves to me that there is a new mindset belonging to some researchers, and they aren't necessarily following the path of some of their predecessors. They are innovative and determined, and they have a great chance of succeeding with the methods they are going to use. They WANT to cure us, NOW, not later.

    They will employ combination therapies along with surefire methods of bridging/matrices, and the rat experiments will start very soon. They have a plan for everything, and I feel this has a great chance of working.

    We need more of this kind of approach to sci research, i.e. playing offense instead of defense, planning a project out from beginning to end, and with minimal bureaucracy involved. I can't thank Will enough for his drive and determination. I don't want to turn 50 pushing this wheelchair.

    To quote from the article mko posted, "...skipping the politics of public money, the red tape of grant-getting, or the scrutiny of peer review."

    ""We may not achieve a magic bullet," Ambler says. "But if we can show there's
    some return and prove it in humans, others will jump in and there will be an avalanche of work. This trial is designed for humans, not to advance anyone's career.""

    These are words to live by. Hopefully this kind of research will take off to the benefit of us all.

  8. #8
    Senior Member DA's Avatar
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    They will employ combination therapies along with surefire methods of bridging/matrices, and the rat experiments will start very soon.

    oh yeah...not like other researchers.

  9. #9
    Senior Member TEION's Avatar
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    Nov 2001

    Few ?'s concerning Levesque...

    Originally posted by rdf:

    We need more of this kind of approach to sci research, i.e. playing offense instead of defense, planning a project out from beginning to end, and with minimal bureaucracy involved. I can't thank Will enough for his drive and determination. I don't want to turn 50 pushing this wheelchair.
    I can't agree with you more. My wife and I are very happy that this article was posted for all of us to read. Will Ambler is an inspiration to us and it is uplifting to see men and women like this are out there dedicted to ending this needless suffering. When word first broke out about Dr. Levesque and his work at Cedars ( I believe it was back in '99 or '98 ) like many we scrabled to learn all we could. We contacted the Hospital, talked to the doctors and wrote letters. Of course, being a supporter and member of SCS made it even more meaningful. We're wondering, is the work of Dr. Levesque still being supported by the SCS? We would also like to know more about Will and how we can help ( if there is any way ). The article mentioned the Foundation for Neural Repair, started by Levesque, how do we contact or learn more about this foundation.

    My wife and I would also like to thank people like you, Will and all the interesting and informative people here at this site. Everybody keep up the good work, it will pay off soon.


  10. #10
    Junior Member numbnuts's Avatar
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    They will employ combination therapies along with surefire methods of bridging/matrices, and the rat experiments will start very soon.
    If all goes perfectly, they will have the experiment protocol planned by the end of 2002. Then they can finalize the team and setup the research lab by 2Q 2003. Then start the experiment in 4Q 2003. Experiment ends in 2Q 2004. Results published 4Q 2004. See if other labs can replicate by 1Q 2006. Test results in larger animal models by 2008...

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