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Thread: Reeves responds on his recovery program

  1. #1

    Reeves responds on his recovery program

    Recently, Christopher Reeve demonstrated to the world that he had recovered some movement and sensation. While he cannot walk, has not regained bowel, bladder, or sexual function, nor can he breathe without a ventilator, his limited recovery is significant. The scientific literature on spinal cord injury predicts that most recovery will occur in the first six months after injury and that it is generally complete within two years. Reeve's recovery, coming five to seven years after his injury, defies these medical expectations and has had a dramatic effect on his daily life.

    Why did he get better so long after his injury? Reeve believes his improved function is the result of vigorous physical activity. He began exercising the year he was injured. Five years later, when he first noticed that he could voluntarily move an index finger, Reeve began an intense exercise program under the supervision of Dr. John McDonald at Washington University in St. Louis.

    Reeve included several activities in his program. He used daily electrical stimulation to build mass in his arms, quadriceps, hamstrings and other muscle groups. He rode a Functional Electrical Stimulation (FES) bicycle, did spontaneous breathing training and also participated in aquatherapy. In 1998 and 1999, Reeve underwent treadmill training to encourage functional stepping.

    Reeve and Dr. McDonald suggest that these activities may have awakened dormant nerve pathways. The fact is, however, that it is not possible in a single experiment to know just what did occur in Reeve's nervous system. To be sure, his recovery may be related to exercise. Dr. McDonald and other researchers and clinicians caution not to over-interpret Reeve's results. Clearly, not all people with paralysis would benefit from a similar program.

    Said McDonald in the Journal of Neurosurgery - Spine, "Although we cannot conclude that the activity-based recovery program produced the functional benefits, we believe it was responsible for the physical benefits."

    It is true for any of us: exercise is related to better health. Because there are few, if any, negative side effects of exercise, even people who don't experience recovery in the way that Reeve has are likely to improve their well-being. For Reeve, a high quad on a ventilator, improved health is the single most important benefit of his exercise and therapy program.

    Reeve's participation in exercise was motivated by the well-known benefits on cardiovascular function, muscle tone, bone density, etc. Indeed, he has had fewer medical complications such as bladder and lung infections. Before 1999, Reeve frequently required hospitalization - he had a total of nine life-threatening complications and required almost 600 days of antibiotic treatment. Since 1999, he has not been hospitalized, has had only one serious medical complication, and has needed only 60 days of antibiotic treatment. These improvements in his health have boosted Reeve's emotional well-being and have enabled him to commit to a variety of work projects knowing he can give them his uninterrupted attention.

    If Reeve's recovery of function was due to the exercise, it was a wonderful side effect. Now, scientists are undertaking detailed studies and working with large numbers of people in centers across the country to give them the chance for similar benefits.

    Christopher Reeve's experience is an example of what can happen when one refuses to accept the "get used to it" dogma. Although it is not clear what caused his recovery, his improvements in function provide a source of hope and inspiration for others.

    Reeve is a strong advocate for making FES technology more widely available. "I have the staff and the equipment," he said. "But what I really hope comes out of my experience is a paradigm shift in the way insurance companies do business. If insurance companies would pay for proactive therapy and equipment they would save money keeping people like me out of the hospital. People with lower level injuries would get up and get out of their chairs. It's a win-win proposition."

    Here is a rundown on the various activities in Reeve's exercise program: (Note: Before considering participation in advanced rehabilitation therapies, such as FES or treadmill training, it is important to be evaluated by one's own physician to ensure that the therapies are appropriate and safe.)

    Functional Electrical Stimulation (FES):

    Reeve does one hour of exercise at least three times a week on an FES bicycle. This technology allows persons with little or no voluntary leg movement to pedal a stationary leg-cycle called an ergometer. Computer generated, low-level electrical pulses are transmitted through surface electrodes to the leg muscles; this causes coordinated contractions and the pedaling motion.

    FES bikes are not new; they have been on the market for almost 20 years. There are two companies now manufacturing FES bikes, Therapeutic Alliances, Inc., makers of the Ergys 2 (which Reeve now uses) and Electrologic, makers of the StimMaster Orion (formerly used and endorsed by Reeve). These bikes are not cheap - they are in the range of $15,000. Some insurance companies have reimbursed for units. There are bikes available in some community settings, at health clubs and rehab clinics. See below for contact information; the Paralysis Resource Center has a list of clinics that use FES bikes.

    A market for used FES bikes has emerged on the Internet. For example, older, first generation Regys bikes go for about $3,000 to $6,000. The first step is to choose a bike that is mechanically sound. All the electronics are upgradeable from the manufacturers. Each bike has a program cartridge set up for the specific needs of each rider, including run times, resistance, etc. A prescription is needed to get the cartridge. For safety reasons, it's not recommended that FES bike riders use another's cartridge.

    Abundant medical literature documents the effectiveness of FES to increase muscle mass and improve cardiopulmonary function. There are studies that also link FES to a reduced frequency of pressure sores, improved bowel and bladder function and decreased incidence of urinary tract infections. Until now, there have been no reports in the literature linking FES to functional improvements of the sort Reeve has experienced.

    According to Dr. McDonald, the FES bike can be more useful than for just building muscle mass. "We propose to use them for a totally different reason -- to promote regeneration and recovery of function. We now have data demonstrating that [FES] activity can enhance regeneration in animals and is associated with recovery of function in humans."

    Treadmill or locomotor training, also known as weight-supported ambulation:

    (Note: While Reeve has used locomotor training and has spoken in support of the research and its beneficial outcome, it is not a part of Reeve's current exercise routine.)

    Locomotor training is a rehabilitation approach that has been emerging over the last decade. It involves a kind of activity-triggered learning whereby practicing a series of specific movements (in this case, stepping) triggers the sensory information that somehow reminds the spinal cord how to initiate stepping.

    Treadmill training uses repetitive motion to teach the legs how to walk again. A paralyzed person is suspended in a harness above a treadmill; this reduces the weight the legs will have to bear. As the treadmill begins to move, therapists move the person's legs in a walking pattern. The theory that drives the work is that paralysis causes "learned non-use" of muscles. But the injured nervous system may be "plastic," that is, capable of recovery when certain conditions, including the patterned neural activity that accompanies treadmill walking, are optimized.

    Research from the University of California at Los Angeles and in Germany, Switzerland and Canada, notes that the spinal cord itself appears to act like a small brain and is thus capable of controlling ambulation. The spinal cord makes many routine decisions about the correct way to walk. When a paralyzed person is retrained to walk, both the brain and spinal cord figure out new ways to do it.

    Many people with paralysis, regardless of time elapsed since onset, have improved their walking after receiving locomotor training. The level of recovery is different for each person, although almost all those with incomplete injuries showed gains.

    It is important to understand, however, that locomotor training is an evolving procedure and may not help everyone to walk better. Scientists, physicians and therapists are still learning the best way to train and which patients can benefit the most. While locomotor training is part of the rehab experience for many Europeans, there is little expertise on how to do it and it is not widely available in the U.S. This is due to change soon as the commercialization of the technology moves forward.

    As treadmill units filter out into the community, it is important for people to recognize that a locomotor training program must include highly trained therapists to work with patients. Maximizing a patient's ability to step after injury depends to a very large extent on the skill and precision with which the therapists deliver locomotor training.

    Aquatherapy:

    Christopher Reeve demonstrated the ability to move his legs and arms in a pool. The effects of gravity are greatly reduced in water so that small body movements can be more easily detected and therapists can determine a person's maximum ability to move without the full resistance of gravity. Also, when people are beginning to recover movement, water makes practice easier. Time permitting, Reeve does aquatherapy once a week for approximately two hours.

    Bone density treatment:

    Since people with paralysis don't typically put weight or pressure on their bones, they tend to lose bone density and often develop osteoporosis. With drugs and exercise on the FES bicycle, Reeve's osteoporosis has been reversed; he now has normal bone density.

    FES Resources

    Therapeutic Alliances, Inc. makes and markets the Ergys 2 and supports the older Regys bikes. Contact the company at 937-879-0734 or visit the Internet site, www.musclepower.com.
    Electrologic makes and markets StimMaster Orion FES bikes.A new generation bike called the Galaxy is being introduced in the fall of 2002. For more contact the company at 937-431-5488 or toll-free at 1-800-758-3460. Visit the Internet site at www.electrologic.com (includes a list of facilities that use the StimMaster bike.)

    A list of clinics and facilities that use FES bikes is available from Paralysis Resource Center Information Specialists.

    For factsheets and references or background on FES and its other applications, contact an information specialist at the FES Information Center, toll-free at 1-800-666-2353, or visit the Internet site at www.fesc.org

    Treadmill or locomotor training resources:

    The UCLA group has developed a treadmill training device under the brand Robomedica. The advantage of this system is the depth of expertise in the development team, led by prominent researchers Reggie Edgerton and Susan Harkema. This is the unit Reeve used; is also the system being used in clinical trials for spinal cord injury currently underway in the U.S. and Canada. Contact Robomedica at 310-393-5883.

    Mobility Research, based in Tempe, AZ, has been selling a harness and treadmill training set up for about 8 years. The LiteGait system can be rented or purchased directly (a pediatric model is $2250; various other models are priced up to $10,500, plus the treadmill, at $2950). The company says it has many stories of paralyzed users getting function back. Its treadmill trainers are available around the U.S. Contact them at www.litegait.com or toll free 1-800-332 WALK (9255).

    Other locomotor systems are coming to the market. The Lokomat, from Switzerland, is being tested at the Rehabilitation Institute of Chicago and the National Rehabilitation Hospital in D.C. The Miami Project to Cure Paralysis also has a Lokomat. The device is described as an exoskeleton (an external skeleton) with robotic joints at the hip and knee to guide the user's legs as they step along the treadmill. The technology is intended to reduce the need for some of the therapists during a training session. See the device at http://www.hocoma.ch (click on the English version).

    HealthSouth, the big rehab center chain, has introduced the AutoAmbulator, a harness and treadmill rig inspired by a visit to UCLA's treadmill program several years ago. The company expects to roll the product out early in 2003, beginning at their inpatient rehab facilities. Contact www.autoambulator.com for more.

    The main clinical trial for treadmill training in the U.S. is being conducted by the National Institute of Child Health and Human Development (NICHD). The protocol calls for people with incomplete injuries within 35 days of onset. The trials will randomly assign patients to either the experimental group, which receives 12 weeks of specialized treadmill training with regular physical therapy, or to the control group, which receives 12 weeks of regular physical therapy. The ability of the patients to "walk" will be measured before and after treatment as well as 6 and 12 months later, using tests that examine mobility independence and speed of ambulation. The trials are ongoing at six sites in the U.S. and Canada:

    Rancho Los Amigos Medical Center, near Los Angeles.
    Shepherd Center in Atlanta
    Ohio State University, Columbus
    Thomas Jefferson University Hospital, Philadelphia
    University of Ottawa, Ottawa, Ontario, Canada
    McGill University, Montreal, Quebec, Canada
    For more detail on the NICHD clinical trials, contact principal investigator Bruce Dobkin at UCLA, 310-306-6500, bdobkin@ucla.edu, or see http://clinicaltrials.gov -- type the word treadmill in the search box.

    The U.S Department of Veterans Affairs is backing three clinical trails to evaluate treadmill training. One, in Cleveland, is enrolling people who have had a stroke; part of the trial will also involve neuromuscular stimulation. Contact Janis Daly, Ph.D., 216-791-3800, rir@po.cwru.edu.

    The VA Rehabilitation Research and Development Service is enrolling people who had a stroke in a Houston trial of treadmill training. Contact Elizabeth Protas, 713-794-7117, lim.peter@houston.va.gov

    The third trial, also in Houston, is enrolling people with SCI to compare supported treadmill training to conventional gait training for improving gait speed, gait endurance, gait efficiency and muscle function. SCI subjects need to be injured more than six months prior to start of training. Contact Sally Holmes, M.D., 713-794-7128

  2. #2
    Excellent article, thanks Chas.

  3. #3
    Senior Member mk99's Avatar
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    there he goes again

    "...FES technology... People with lower level injuries would get up and get out of their chairs."

    CR said something similar on Larry King Live when a caller enquired about treadmill training. Does anyone have a clue as to what the hell he is talking about here? Does this man really think that anyone with a lower level injury can walk if they only do FES & treadmill training? I'm going to try to find out. Will update here if I get an answer.

    Excellent article though. Thanks Chasb for the post.

  4. #4

    Bone density restoration information

    I did some follow up, as to what CR used to restore bone density. Every 2 months he received an injection of a drug called Aredia. He also was given oral calcium suppliments.

    Here is the search link for Aredia:

    http://www.google.com/search?hl=en&i...=Google+Search

    [This message was edited by chasb on Oct 23, 2002 at 02:07 PM.]

  5. #5
    Thanks Chasb, the following are comments by Dr. Young and others regarding the combined use of calcium and Pamidronate for the treatment of osteoporosis.

    http://carecure.org/forum/showthread.php?t=4092

    http://carecure.org/forum/showthread.php?t=4207

  6. #6
    Senior Member Max's Avatar
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    Chabs.

    Thanks for posting this.


    Mike,

    Its not first time that CR makes blooper like this, with all my due respect to what he is doing for our cause...


    Probably, he meant that people with lower injuries are more lazy than quads like him


    Just another megamaniac idea of his

    ==============================
    "Those who seek to predict the future... might first look to the past. The past is a mirror -- and those who ignore its sometimes dark reflection, are doomed to repeat it... Will it be those seeking redemption who shall decide the future... or will those driven only by greed and envy shape our destiny? Even a hundred years later, the outcome is still very much in doubt. .." Outer Limits(Heart's Desire)



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