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Thread: The science of hope

  1. #1
    Senior Member KIM's Avatar
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    The science of hope

    http://www.denverpost.com/Stories/0,...548817,00.html

    The constant chatter of possible breakthroughs in treating spinal-cord injuries leaves those seeking answers to filter out the hype. Even the experts are quick to point out just how slow real progress is.

    By Kevin Simpson
    Denver Post Staff Writer


    Post / Hyoung Chang
    "I've adapted - I ski, kayak, drive a truck - I've gone back to my athletic roots. But every day I wake up and say, 'Paralysis sucks.' " - Chris Chappell, who was paralyzed in a biking accident. His aggressive physical therapy has helped him regain use of his arms.




    Justin Richardson had no idea what awaited him when he dived without looking into the shallow water of a North Carolina swimming pool.

    Paralysis. Desperation. Hope.

    Politics.

    From the moment Richardson bruised his spinal cord 15 months ago and lost movement and sensation from the chest down, family and friends searched frantically for a medical miracle. They found a promising but unproven procedure overseas - but they had to act quickly.

    "I immediately agreed to do it," recalls Richardson, now 24. "I've always been a bit of a risk taker - biggest risk, biggest payoffs.

    "I had nothing to lose."

    For an estimated 11,000 Americans paralyzed each year and about a quarter-million others coping with their condition, the possibilities don't always seem so clear-cut.


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    The death of high-profile research advocate Christopher Reeve last month merged with election-season rhetoric over the lingering stem-cell controversy to further cloud the issue.

    "Our office was flooded with people saying, 'Is my son living on borrowed time? Will it be a hundred years before therapy arrives? Should we give up?"' says Dr. Wise Young, director of the W.M. Keck Center for Collaborative Neuroscience at Rutgers University. "It was so unfortunate."

    People with spinal-cord injuries and Internet access encounter news of tantalizing research in foreign countries, clinical trials, innovative therapies, outside- the-box rehabilitation and, in Denver, two separate lines of scientific inquiry involving renowned Craig Hospital.

    But how does a patient separate hope from hype?

    "What's real is that this is a long and difficult process," says Dr. Daniel Lammertse, medical director at Craig who has worked 23 years at the hospital. "We've moved during my career here from the general prevailing mood in the medical community being one of pessimism to one of optimism."

    Advances in several key areas, propelled by what researchers refer to simply as "the Reeve effect" in attracting talent and funding, could soon be on their way to human clinical trials, says Naomi Kleitman, an expert on spinal- cord research at the National Institutes of Health in Washington, D.C.

    "Scientists might be enticed by celebrity," says Kleitman. "But they really love science. I don't think there's ever been a time when the community as a whole spent as much time on taking research from bench to bedside."

    Within the past few months, scientists at the Miami Project to Cure Paralysis and two other sites have arrived at a promising three-part therapy built around Schwann cells, which aid nerve regeneration in some parts of the body and may be coaxed to do the same in the central nervous system.

    Researchers across the country continue to test a variety of cell types to mitigate spinal-cord damage or regain function - including both embryonic and adult stem cells and a type of white blood cells called macrophages. Doctors at Craig are involved in the second phase of clinical trials for macrophage therapy developed in Israel, and continue to pursue stem-cell research in collaboration with colleagues in Sweden.

    Researchers in China and Portugal have reported some modest, although not necessarily lasting, recovery of movement and sensation after implanting different types of human olfactory cells at the site of spinal-cord injury. Although the trials lack scientific rigor, they are nonetheless regarded by many scientists - and some patients who've spent about $25,000 pursuing the procedures - as intriguing.

    New methods of rehabilitation such as treadmill therapy and robotic- assisted exercise have been geared toward understanding the ability of the nervous system to relearn some function after an injury.

    If researchers agree on one thing, it's that no single line of scientific inquiry will produce the "magic bullet" to cure paralysis.

    "Medication, stem cells, robotic therapy, electronic stimulation, plus potentially, nerve manipulation - the likelihood is that all those contribute to successful treatment of the nerves," says Dr. Elliot Roth, medical director of the Rehabilitation Institute of Chicago. "We don't really think we'll see optimal outcomes from one strategy."

    But what constitutes a cure?

    Just as spinal-cord injuries affect diverse physical functions from basic bladder, bowel and sexual issues to simple mobility, they also give rise to incremental definitions of a cure.

    "We have a research study that doesn't do anything to get a guy out of a wheelchair but allows him the technology to pursue fatherhood," says Maria Amador, director of education for the Miami Project. "That's a cure to them, for now."

    But scientists in Miami also have found that Schwann cells combined with certain "messenger" molecules and the antidepressant Rolipram have produced dramatic functional recovery in animals. The timetable for human clinical trials could be expedited because much is already known about the effects of the drug and messenger molecules on humans.

    For Justin Richardson, who'd lost almost all function of his legs, arms and hands in his ill-fated dive into the pool, restoring any of that movement loomed large as he made the snap judgment to pursue experimental macrophage therapy in Israel. In this therapy, macrophages are treated with skin cells and then applied to the spinal cord within 14 days of the injury.

    A little more than a year later, Richardson has regained full function of his hands and arms.

    The study of the macrophage procedure now has entered its second phase and includes some U.S. sites, including Craig, which has been performing the procedure for nearly a year.

    If this phase shows sufficient promise, the Israeli company Proneuron Biotechnologies would embark on a third round of trials. Success at that stage could move the procedure to the marketplace.

    Now a student at North Carolina State in Raleigh, Richardson hopes to move on to graduate school and ultimately teach high school English. Going against the grain in the conservative Bible Belt, he has become politically active in supporting stem-cell research.

    Although one experimental treatment option usually taints a patient for participation in others, Richardson still spends an hour each day looking at more potential options.


    Post / Hyoung Chang
    "But if you speak to a quadriplegic patient and say, 'We can do something that gives you a triceps. Would that change your life?' They light up and go, 'Unbelievably.' " - Dr. Scott Falci, spinal-cord researcher at Craig Hospital in Englewood
    "One risk paid off," he says. "Who's to say the next one won't?"

    Focusing on the here and now

    The quest for cures can undermine small quality-of-life victories that can make a huge difference.

    Jack Dahlberg took a risk in 1969, a year after he broke his neck in a skiing accident and lost the use of his legs and some movement of his arms and hands.

    He underwent tendon transfer surgery that enabled him to flex his fingers, regain good function of his hands and become more independent. But he pressed medical science no further.

    Since then he has seen people with paralysis embrace chiropractic, abdominal tissue transfers, shark tissue, hyperbaric chambers. Even in '68, he heard talk of a cure in "10 to 20 years."

    "My nature was not to focus on that, but to get on with my life," he says.

    Dahlberg, 55, isn't indifferent to finding a cure - he works out of his Greenwood Village home as a rehabilitation consultant, has long been a leader in the National Spinal Cord Injury Association and appreciates each gradual research development. But after 36 years, he doesn't devote much time to searching for a breakthrough.

    "If they come up with a proven technique and people start walking next week, I won't be there until next year," he says. "I've seen so much come and go, and false hope come out of it."

    Experts such as Dr. Steven Kirshblum, director of the spinal-cord injury program at the Kessler Institute for Rehabilitation in New Jersey, underscore the importance of keeping an eye on the ultimate goal but agree that expectations sometimes outpace actual science.

    "My concern is that some people have taken this quest for a cure so far - they believe it's right there at the doorstep - that money has been funneled away from care research," says Kirshblum, who helped treat Reeve.

    Although the media spotlight focused on Reeve's efforts to find a cure, his foundation also has funded less- publicized care research, says Susan Howley, executive vice president and director of research for the Christopher Reeve Paralysis Foundation.


    Special / Karen Tam
    "One risk paid off. Who's to say the next one won't?" - Justin Richardson, who opted for an experimental treatment after he was paralyzed from the chest down. He now has use of his arms and hands.
    The organization has given $3.5 million since 1999 toward battling bed sores, blood-pressure and body-temperature issues, pain and spasticity - concerns that some advocates say have taken a back seat to more-glamorous research.

    But perhaps more impressive was Reeve's effect on government funding. At the time of his 1995 injury, the National Institutes of Health pumped $47 million into spinal-cord research. By next year, that figure will have nearly doubled to $93 million.

    Reeve's organization wasn't the first high-profile effort.

    The Miami Project began work in 1985, aided by the efforts and celebrity fundraising status of football Hall of Famer Nick Buoniconti, whose son had been paralyzed. It was launched amid hopes that a couple years and a couple million dollars would put researchers close to their goal, says education director Amador.

    That didn't happen.

    "Scientific steps are small, steady steps," she explains. "What we know today is light-years from what we knew in 1980. If you look at it from the perspective of 20 years, there have been significant advances."

    One of those advances involves the collaboration between Craig Hospital and the Karolinska Institute in Sweden. Dr. Scott Falci and his colleagues in Stockholm have targeted 2006 for the first implantation of their stem-cell lines into patients with syringomyelia - post-injury cysts that create cavities in the spinal cord and often cause further loss of function.

    They now must find the optimal time to introduce the cells to the injured area, and then determine whether they fill the debilitating cavities and help recover function.

    Falci focuses on "realistic possibilities," incremental improvements in specific areas - isolated muscle groups, hands and fingers, bowel and bladder function. He is careful not to oversell the potential.

    "But if you speak to a quadriplegic patient and say, 'We can do something that gives you a triceps. Would that change your life?' they light up and go, 'Unbelievably,"' Falci says. "Why? Because a guy who has a triceps can wheel his chair."

    Exercising patience

    Even as programs find success reteaching muscles, advocates find themselves aching for answers.

    Chris Chappell wheels himself to the basement room where gym equipment dominates every corner, where he spends up to two hours each day on weight training for his upper body, core-muscle strengthening for his abdomen - and endless cycling and walking repetitions for his paralyzed legs.

    Each apparatus has a specific function, including the homemade contraption in his garage that mechanically hoists him into a standing position on an elliptical trainer. But it's Chappell, a former competitive distance runner and bicycle racer, who drives them - pushing himself, pushing the envelope.

    "We all have different ways of looking at life," says the 41-year-old Chappell, hurt in a 2000 biking accident. "I've adapted - I ski, kayak, drive a truck - I've gone back to my athletic roots.

    "But every day I wake up and say, 'Paralysis sucks."'

    About a year after his injury, he began to immerse himself in information on potential treatment possibilities, plus the politics and economics that surround the science.

    "I was baptized into a community I didn't want to be a member of," Chappell says. "I learned the players, I started to talk to them, started turning over the rocks. I went down a lot of dead ends, anecdotal recovery scenarios - nothing solid."

    So he started looking "outside the box."

    About two years ago, Chappell visited Project Walk, a California facility that has claimed remarkable results in some clients with an intensive exercise regimen that works on paralyzed muscles as well as general physical conditioning.

    He considered replicating the concept in Colorado - he even drew up a business proposal - but found little interest. So he has pursued the basic idea in his own rehabilitation.

    "Exercise is good - wow, what a concept," Chappell says, laughing at the simplicity. "The difference between here and Project Walk is they've got more leg machines, massive pulley systems. But the fundamentals are the same. You build core strength and initiate new innervation."


    Post / R.J. Sangosti
    "If they come up with a proven technique and people start walking next week, I won't be there until next year. I've seen so much come and go." - Jack Dahlberg, whose paralysis in 1968 left him looking for how to live life, not cure his condition.
    Chappell, who had virtually no movement in his dominant left arm, has exercised his way back to about 70 percent of his original strength - plus 90 percent in his right arm and the ability to bench press 200 pounds. He also has stronger abdominal muscles and improved sensation and bowel and bladder function.

    Project Walk founder and owner Ted Dardzinski says his method works precisely because it goes against the grain of traditional rehabilitation, but he admits he has no clue about the science behind the success.

    "I don't care," Dardzinski says. "We work simple. We don't get paid to prove this. We're not trying to change the medical community. We're trying to change the perception of a person with a spinal-cord injury."

    At the Rehabilitation Institute of Chicago, patients stand in a harness while mechanical devices move their legs in a walking motion. Dr. David Chen, medical director for RIC's spinal-cord injury program, describes the mechanism as a "Robocop" device that drives a therapy called assisted gait training.

    "There's a growing body of literature both in animals and in clinical studies that by repetitive training of the legs to simulate walking activity, you can retrain part of the nervous system to walk normally," Chen says.

    "You can give a drug or a treatment to repair the nervous system," he adds, "but it still has to relearn the things it was doing before."

    Advances in the laboratory, clinical trials and rehabilitation offer considerable hope, but the timetable remains elusive.

    Because spinal-cord injuries represent a relatively small medical market that discourages private investment, many experts say that only a greater government buy-in to research efforts will significantly accelerate the process.

    Even then, Chappell figures, it's the research on more widespread conditions - Alzheimer's and juvenile diabetes, for instance - that ultimately will benefit spinal-cord injury research.

    "We'll be a fallout, a positive ripple effect," predicts Chappell, whose economic take reflects his work as an investment adviser. "That's where I see the huge potential."

    Ten years ago, Craig Hospital's Lammertse told patients that established treatments would emerge within their lifetimes - and hopefully within his career.

    He still thinks research may deliver on that hope.

    "We're certainly at the point of clinical trials, though I can't say we're at established therapies," Lammertse says. "But I still have some working years left."

    Staff writer Kevin Simpson can be reached at 303-820-1739 or ksimpson@denverpost.com .



    "But every day I wake up and say, 'Paralysis sucks."'

  2. #2
    Thanks Kim;

    This is one of the better written and well researched articles published in mainstream media regarding SCI and the status of the cure.

    This is how you climb a mountain. You keep establishing base camps that are higher and higher. The writer does a good job of gathering our hope and putting it safely in the tent.

    I know there are others above this level pursuing new routes to the top.

    John

    "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

  3. #3
    geeez - not much hope there....

  4. #4
    Yes John you're right.

    I worked with Kevin for about 3 weeks on this article. He was quite thorough and was quickly initiated into the sci world.

    I think he did a nice job.

    My only problem is that the picture made me look quite pudgy

  5. #5
    Chris and JDR, glad to see you guys profiled. Excellent article.

    Researchers in China and Portugal have reported some modest, although not necessarily lasting, recovery of movement and sensation after implanting different types of human olfactory cells at the site of spinal-cord injury. Although the trials lack scientific rigor, they are nonetheless regarded by many scientists - and some patients who've spent about $25,000 pursuing the procedures - as intriguing.
    Hmmm, I don't know about Dr. Lima's patients but I don't think any of Dr. Huang's have lost the recovery they've gained.

    "My concern is that some people have taken this quest for a cure so far - they believe it's right there at the doorstep - that money has been funneled away from care research," says Kirshblum, who helped treat Reeve.
    Care research has and continues to get more funding than Cure research. Care funding has not suffered in the slightest due to funding allocations towards a cure. That's such a persistent and false myth.

    Because spinal-cord injuries represent a relatively small medical market that discourages private investment, many experts say that only a greater government buy-in to research efforts will significantly accelerate the process.

    Even then, Chappell figures, it's the research on more widespread conditions - Alzheimer's and juvenile diabetes, for instance - that ultimately will benefit spinal-cord injury research.
    Agreed. Especially breakthrough's gained from ESC research.

  6. #6
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    Excellent article. I just sent the author an e-mail and thanked him for a job well-done. I'm going to forward the link to my local paper and ask them to do a reprint.

    Ronnie

  7. #7
    How many more videos and/or client testimonials of progress will it take before our "claim" becomes a reality?

    Other than that...good article.

    Edit: Just looked at the actual article...Chris you need better lighting in your basement... 'cuz you definately pudgey in that pic ...lol



    Eric Harness,CSCS
    Project Walk®

  8. #8
    Eric, lol - you're so right about the pudgy.

    Thanks for the feedback.

  9. #9
    Senior Member Leo's Avatar
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    On second thought just hush Leo.

    Sorry for rant. naw

    "All you have to decide is what to do with the time that is given you."
    Gandolf the Gray

    [This message was edited by Leo on 11-23-04 at 05:03 PM.]

  10. #10
    I was pleased with the article as well....and Chris, don't feel too bad about looking "pudgy". My picture wasn't very flattering either. haha...happy to see the good feedback from it.

    "...I ask for, not at once no government, but at once a better government. Let every man make known what kind of government would command his respect, and that will be one step toward obtaining it". ~Henry David Thoreau

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