at UCLA. Guided by the theory that it doesn’t take much brain activity to walk, he experimented with paraplegics who had control of their upper body but were paralyzed from the waist down. He placed these patients on a treadmill, flipped the switch, and their legs responded as the machine went into motion. At first they needed the assistance of several physical therapists to place the feet correctly and to avoid sprained or broken ankles. Gradually Dr. Edgerton and his team found that if the average patient stepped on the treadmill an hour a day for approximately sixty days, he or she would then be able to walk over ground on their own assisted only by a cane. When I visited his lab I saw an eighteen-year-old paraplegic who had completed the training get outof a chair by himself, walk quite normally across the room, sit down in another chair, then get up again, still completely unassisted, and walk back to his original seat. Technically speaking he was not cured, but because of this specialized activity-dependent training, he had achieved extraordinary functional recovery. He is no longer a burden to his insurance company. In my case it was obvious that hard exercise was keeping me out of the hospital, but I still wondered how and when it would significantly change my life.
I returned home and intensified my workouts. I rode for longer periods of time on the bike, increased the repetitions of my voluntary movements, and raised the voltage on the E-Stim machine. I put more time and effort into breathing on my own, trying to develop enough strength in my diaphragm to eventually wean myself off the ventilator. Professors Daniel Martin and Paul Davenport from the University of Florida at Gainesville introduced a novel theory. During exercise, carbon dioxide builds up in the body. That triggers a demand for more oxygen, and the average person responds by breathing faster. Their approach (which they had successfully demonstrated in rats) is to
reduce
the amount of air pumped into the patient by the ventilator during exercise and let the level of CO 2 rise as high as the patient can tolerate. With enough repetition, asthe patient is suffering the equivalent of pulling six g’s in a jet fighter, the brain stem should get the message and kick-start autonomic breathing. The normal range of CO 2 in the bloodstream of a person at rest is anywhere between 35 and 45 percent. When I started using their weaning method my CO 2 was a feeble 25 percent. By May 2002 my resting percentage was up to 34 percent, and when I was on the bike I could endure levels of 47 to 49 percent for as long as forty-five minutes. Autonomic breathing hasn’t happened yet, but I’m still trying.
July 8, 2001, was another watershed moment—literally. I was in St. Louis again for more testing and John decided it was time to throw me in the pool. Of course he didn’t actually throw me, but it was an “out of the box” experience both for me and for his staff of physical therapists. No patient had ever gone into the pool while attached to a ventilator. Most rehab facilities wouldn’t even consider aquatherapy for a vent-dependent quadriplegic. What if water gets into the hose? What if the ventilator falls into the pool? John’s answer: somebody with an IQ above double digits holds on to the vent, and two or three others keep the hose out of the water.
Soon I was floating on my back for the first time in six years, with just a collar around my neck and an inflatable belt around my waist. I relaxed completely andreveled in the sensation of the warm water all around me. A therapist held my shoulders and gently made my body “snake” from side to side. I watched my feet, which now seemed far away, swishing back and forth. I had the sense that my body was actually lengthening as the vertebrae were relieved of the compression they have to withstand when I sit in my wheelchair.
After ten minutes of sheer bliss they put me to work. I had to perform every
I returned home and intensified my workouts. I rode for longer periods of time on the bike, increased the repetitions of my voluntary movements, and raised the voltage on the E-Stim machine. I put more time and effort into breathing on my own, trying to develop enough strength in my diaphragm to eventually wean myself off the ventilator. Professors Daniel Martin and Paul Davenport from the University of Florida at Gainesville introduced a novel theory. During exercise, carbon dioxide builds up in the body. That triggers a demand for more oxygen, and the average person responds by breathing faster. Their approach (which they had successfully demonstrated in rats) is to
reduce
the amount of air pumped into the patient by the ventilator during exercise and let the level of CO 2 rise as high as the patient can tolerate. With enough repetition, asthe patient is suffering the equivalent of pulling six g’s in a jet fighter, the brain stem should get the message and kick-start autonomic breathing. The normal range of CO 2 in the bloodstream of a person at rest is anywhere between 35 and 45 percent. When I started using their weaning method my CO 2 was a feeble 25 percent. By May 2002 my resting percentage was up to 34 percent, and when I was on the bike I could endure levels of 47 to 49 percent for as long as forty-five minutes. Autonomic breathing hasn’t happened yet, but I’m still trying.
July 8, 2001, was another watershed moment—literally. I was in St. Louis again for more testing and John decided it was time to throw me in the pool. Of course he didn’t actually throw me, but it was an “out of the box” experience both for me and for his staff of physical therapists. No patient had ever gone into the pool while attached to a ventilator. Most rehab facilities wouldn’t even consider aquatherapy for a vent-dependent quadriplegic. What if water gets into the hose? What if the ventilator falls into the pool? John’s answer: somebody with an IQ above double digits holds on to the vent, and two or three others keep the hose out of the water.
Soon I was floating on my back for the first time in six years, with just a collar around my neck and an inflatable belt around my waist. I relaxed completely andreveled in the sensation of the warm water all around me. A therapist held my shoulders and gently made my body “snake” from side to side. I watched my feet, which now seemed far away, swishing back and forth. I had the sense that my body was actually lengthening as the vertebrae were relieved of the compression they have to withstand when I sit in my wheelchair.
After ten minutes of sheer bliss they put me to work. I had to perform every
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