gratified to learn that my daily regimen had been worthwhile. He left on cloud nine, but I was left to face the reality that nothing in my everyday life had changed. I had graduated to ASIA
B
, but I was still in the same chair, still on the same vent, still requiring professional care 24/7. I took some consolation in the fact that I was recovering and that I had just scored a major upset in the world of science and medicine. At the same time I felt bad for people with degenerative diseases such as ALS, multiple sclerosis, and muscular dystrophy. What could exercisedo for them? Just like victims of Parkinson’s, Alzheimer’s, diabetes, and so many other diseases, they need scientific research as much as I do. We discussed our priorities internally at the CRPF and decided that funding cutting-edge research would remain our primary mission; at the same time we voted to allocate more money for quality-of-life grants. On May 3, 2002, we opened the Christopher and Dana Reeve Paralysis Resource Center to provide critical information and support for victims and their families suddenly facing paralysis.
I followed Dr. McDonald’s instructions to keep exercising and trying to make my body move. The exercise was carefully regulated, but it was left up to me to experiment with movement. John’s advice was to try anything, because that was the only way to find out which pathways were still intact and to see if others could be reawakened. Fortunately Chris Fantini had just completed his training and was now a licensed physical therapist. We worked together to create a protocol that would test enervation and muscle strength in every area.
Because I had spent years riding the FES bicycle on a fairly regular basis, we decided to see if I could create spontaneous movement in either leg. As I lay flat Chris would place my foot on his right shoulder and thenpush my leg forward until it was bent 90 degrees at the knee. I would say “go” to let him know that my brain was issuing a command, and then push as hard as I could to straighten out the leg. The first few times nothing happened. Saying “go” to my leg was about as productive as saying “drop” to Chamois when she fetched a tennis ball. Repetition was the key: during the fourth or fifth attempt I could see the quads in my right leg start to flicker and Chris could feel my foot pushing against his shoulder. Soon the left leg followed suit and Chris had to lean against my feet, providing resistance to make the exercise more difficult as the movements grew stronger.
Building on my ability to flex my right wrist, we moved on to the forearm. Chris or one of the other aides who had been taught the routines placed my forearm across my chest, supporting the weight of the arm with an open palm under the elbow. The task was to fully extend the forearm, using my triceps and forearm extensors. Strength was not an issue, thanks again to regular E-Stim of my arms over a long period of time. The challenge was to establish the same connection that made it possible to move one finger with signals originating from the correct part of the motor cortex. As I began to experiment with movement, the problem was overflow: muscles would fire in irrelevant areas. Bicepsand deltoids might kick in when I only wanted activation in the triceps. But I knew that overflow could be controlled with practice; it was a much more tractable condition than minimal movement or none at all.
Forearm extension from placement across the chest was a routine maneuver in the range-of-motion protocol dating back to rehab in 1995. My body and mind were well accustomed to somebody else moving my arm for me. Now we were attempting to harness strength, habit, and willpower to move it on my own. It only took about a week to discover that when I sharpened my mental focus—in this case trying to concentrate only on my triceps—the overflow subsided. Now I was able to extend the forearm, tenuously at first, but then with more
B
, but I was still in the same chair, still on the same vent, still requiring professional care 24/7. I took some consolation in the fact that I was recovering and that I had just scored a major upset in the world of science and medicine. At the same time I felt bad for people with degenerative diseases such as ALS, multiple sclerosis, and muscular dystrophy. What could exercisedo for them? Just like victims of Parkinson’s, Alzheimer’s, diabetes, and so many other diseases, they need scientific research as much as I do. We discussed our priorities internally at the CRPF and decided that funding cutting-edge research would remain our primary mission; at the same time we voted to allocate more money for quality-of-life grants. On May 3, 2002, we opened the Christopher and Dana Reeve Paralysis Resource Center to provide critical information and support for victims and their families suddenly facing paralysis.
I followed Dr. McDonald’s instructions to keep exercising and trying to make my body move. The exercise was carefully regulated, but it was left up to me to experiment with movement. John’s advice was to try anything, because that was the only way to find out which pathways were still intact and to see if others could be reawakened. Fortunately Chris Fantini had just completed his training and was now a licensed physical therapist. We worked together to create a protocol that would test enervation and muscle strength in every area.
Because I had spent years riding the FES bicycle on a fairly regular basis, we decided to see if I could create spontaneous movement in either leg. As I lay flat Chris would place my foot on his right shoulder and thenpush my leg forward until it was bent 90 degrees at the knee. I would say “go” to let him know that my brain was issuing a command, and then push as hard as I could to straighten out the leg. The first few times nothing happened. Saying “go” to my leg was about as productive as saying “drop” to Chamois when she fetched a tennis ball. Repetition was the key: during the fourth or fifth attempt I could see the quads in my right leg start to flicker and Chris could feel my foot pushing against his shoulder. Soon the left leg followed suit and Chris had to lean against my feet, providing resistance to make the exercise more difficult as the movements grew stronger.
Building on my ability to flex my right wrist, we moved on to the forearm. Chris or one of the other aides who had been taught the routines placed my forearm across my chest, supporting the weight of the arm with an open palm under the elbow. The task was to fully extend the forearm, using my triceps and forearm extensors. Strength was not an issue, thanks again to regular E-Stim of my arms over a long period of time. The challenge was to establish the same connection that made it possible to move one finger with signals originating from the correct part of the motor cortex. As I began to experiment with movement, the problem was overflow: muscles would fire in irrelevant areas. Bicepsand deltoids might kick in when I only wanted activation in the triceps. But I knew that overflow could be controlled with practice; it was a much more tractable condition than minimal movement or none at all.
Forearm extension from placement across the chest was a routine maneuver in the range-of-motion protocol dating back to rehab in 1995. My body and mind were well accustomed to somebody else moving my arm for me. Now we were attempting to harness strength, habit, and willpower to move it on my own. It only took about a week to discover that when I sharpened my mental focus—in this case trying to concentrate only on my triceps—the overflow subsided. Now I was able to extend the forearm, tenuously at first, but then with more
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