Nothing Is Impossible (11 page)

The motor function test is another head-to-toe assessment with the patient still in bed. There is a checklist of prescribed voluntary movements, measurements of the effort required to move parts of the body against resistance, and an evaluation of synapse time—the time it takes to initiate movement when the patient says “Go.”

After we finished the official ASIA exam, John handed the forms to Linda and took out his video recorder. He wanted me to repeat the movements I had demonstrated in St. Louis a mere three weeks earlier. This time I was ahead of him. Expecting that he would want to see improvement, even in such a short time, I had been practicing almost daily. Under the scrutiny of the video recorder’s blinking red eye, I moved the thumb and index finger of my left hand. This time the movements were greater and I could initiate them much faster. I was able to raise my right hand as before, but now I could flex it in one smooth motion that took less than ten seconds. When John or Dolly pressed a hand against the ball of my left foot, I could push it away. I was able to move individual toes on both feet. I hadn’t worked on my toes before, so I was thrilled to meet the challenge of this surprise request. The most impressive movement, according to John, was a demonstration of sphincter control—not normally something I would brag about, but extremely significant in my condition because the enervation comes from the lowest segment of the spinal cord. If you can contract the sphincter on command it positively proves that there are intact, functioning pathways all the way from the brain to the bottom of the cord.

The ASIA scale ranges from
A
to
E: A
represents virtually no movement or sensation, while
E
is the classification for a score of 100 percent in both areas. My first ASIA exam was conducted at Kessler on July 5 and 6, 1995. In the categories of Motor Function, Light Touch, and Pin Prick, I scored 2 percent, 8 percent, and 6 percent, respectively, which made me an ASIA
A
. Now, on the ASIA exam conducted by John McDonald six and a half years later, I scored 10 percent on Motor Function, an incredible 56 percent on Light Touch, and a significant improvement on Pin Prick, up to 22 percent.

John used every superlative in the book when he showed me the scores. He was the proverbial kid in a candy store, a four-year-old on Christmas morning. I appreciated his enthusiasm and was 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 exercise
do 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 then
push 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. Biceps
and 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 speed and assurance. Within a month the synapse time to initiate movement in both forearms and both legs was practically instantaneous—a sure sign that just like the index finger, the signals were coming from the correct part of the motor cortex.

By January 2001, I was spending as much as three to four hours a day on physical therapy. We would work the lower body one day, the upper body the next, combining E-Stim, the FES bike, and voluntary motion against resistance. The forearm extensions had led to gaining the ability to fully extend both arms and raise them up like wings. Then I learned to start with my
arms fully opened horizontally and bring them down to rest at my side. I could do this one at a time or simultaneously, with an aide giving light support at the wrists and elbows.

One day I decided to see if I could sit up by myself out of the wheelchair. Again, there was no reason to assume I could do that, but no reason to assume I couldn’t. (I had been using the E-Stim on my abdominal and paraspinal muscles as part of my regular routine.) Dolly and Chris positioned the chair next to the tilt table and transferred me onto the edge. Chris stood behind the table in case I fell backward, while Dolly covered the front. I asked her to plant my feet the width of my shoulders to give me a base of support, and I asked Chris to pull my upper body fully upright, making sure that I wasn’t leaning left or right. Then I asked them both to let go. Nothing happened, which (for once) was exactly the desired outcome. I just sat there. All the other exercises required strenuous effort; sitting upright on my own required me to relax and allow the continuous, subtle interactions of nerves and muscles to create balance. When I started to fade to the right or the left, I commanded the muscles on the opposing side to compensate and bring me back to center. I was overjoyed to find that sitting on my own wasn’t very difficult. I reflected on the fact that balance is natural, it’s
where the body wants to be. Maybe after all these years it still remembers. That’s why practically anybody can get on a bicycle after twenty years and pedal away.

I closed my eyes, just as an experiment. I didn’t know if visual reference was necessary to keep me upright. Once again, nothing happened. For nearly five minutes I remained motionless, and then I started to slump forward as fatigue set in. My head, which weighs about twenty-six pounds, was the first to go and then my upper body followed. But I had been sitting virtually untouched for more than half an hour.

Today I look back at that experience as one of the three most significant milestones in my history as a spinal cord patient. The first was discovering that my injury was not complete; the second was finding out that I could breathe on my own, if only for short periods of time. The ability to initiate movement far below the level of my injury and simply to sit with little or no assistance meant there was even more reason to hope.

I went back to St. Louis in February for another round of testing and evaluation. The functional MRI showed that all the movements I had acquired since the last visit were also being directed by the correct part of the motor cortex, with some recruitment from the opposite hemisphere of the brain. The ASIA exam was a great success: because my motor and sensory scores
had improved dramatically, I was reclassified as an ASIA
C
. Dr. McDonald was again ecstatic, describing these results as “history in the making.” I was encouraged by the thought that since my improvement was the result of exercise, it might translate into insurance companies paying for equipment that could help other patients recover enough function to return to work or school. Wouldn’t it be more profitable to give patients who meet certain criteria the tools and training they need to get better and go away?

Proof of that principle had already been convincingly demonstrated by Dr. Reggie Edgerton 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 out
of 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, as
the 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 and
reveled 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 movement I could do on land, and then some. Suddenly a therapist said, “How about standing?” I could tell that the only acceptable answer was “Sure.” The next moment many hands were holding me upright. Someone put rubber boots on my feet and secured five-pound weights around my ankles. I was asked to bend my knees and let my body down until the water level was just below my trachea. The next move would be to push with my legs and stand. I focused on my quads, once again making the connection that had by now become an integral part of my life. When I was ready I gave myself a silent “Go.” The muscles fired and I shot straight up. Suddenly I was towering above everyone around me. John, Linda, Dolly, a documentary film crew, and various onlookers applauded and cheered as if they were watching a moon launch.