There are some times in our lives when patience is justified, but waiting to hear that there is a cure for spinal cord injury or diseases has been a true test of my patience. I consider myself to be a patient man, but it has been over 24 years since my spinal cord injury and those of us who were in the same graduating class from the Sacred Heart rehab ward were told at the time that a breakthrough discovery was just around the corner. Obviously, that was a long corner.
News reports this week make it clear that scientists have been spending time and money on other less important things than finding a cure for spinal cord injury. They have been seeking to identify the "God particle," or Higgs Boson, in priority over discovering the magic formula that will help us all walk and dance again. Those scientists who were not working on that project have apparently been frittering away funds to develop a faster test for the presence of HIV/AIDS, even though people are sitting in wheelchairs around the globe with an expectation that someone is prioritizing an end to paralysis.
Even though I don't have any real proof of it, I imagine that additional funding and energies have been spent in trying to stave off global warming or to prevent the extinction of some endangered species in a far-off corner of the world. While that is going on, those of us who have damage to our spinal cords at all levels have hungered for any news that would indicate that a reliable means of regaining function, or even walking, has finally arrived. Alas, that time has apparently not arrived yet.
As quasi-founder of a spinal cord injury support group that catered to current rehab patients and those who were already out of the hospital in 1988, I was always pushing the bubble to see if we could hear from somebody new when it came to spinal cord injuries, research, or living independently. In the process I came across background information on one of the more controversial figures in spinal cord injury research at that time. Dr. Carl Kao
was doing stem cell research on dogs, seeking to step up to humans, at the time I was injured. The members of our support group collectively decided that we would like to hear what was happening, and we wanted to hear it directly from Dr. Kao.
The hospital administration did not want to endorse, or support, an appearance by Dr. Kao, as the research protocols he was using were looked upon with skepticism by some other segments in the medical profession, including the licensing agencies in most states. At the time he was attempting to establish his neurosurgery practice in Washington State. The hospital administrators eventually relented, due to continuing pressure from their current and former rehabilitation patients, and Dr. Kao traveled to Spokane to speak with us at a meeting site away from the hospital.
I'm not going to go into the technical jargon here, but he was creating spinal cord injuries and treating with transplanted nerve cells. Some of the animals, including dogs, were rudimentally walking or standing again in the videos he showed us. Some of his other techniques included untethering the spinal cord, overlaying the injury site with omentum, prescribing regular exercise and stretching, wearing lower leg braces or boots and follow-up with multiple hyperbaric oxygen treatments and the drug 4-minopyridine. Several of those techniques were new to us but have been used by other researchers, in different combinations, so we figured that we were witnessing the cutting edge of modern science's discovery of a cure for spinal cord injury.
Our collective excitement about the search for a cure continued to grow, as we read about Dr. Jerrold Petrofsky and his computerized leg muscle stimulator coupled with a rigorous exercise regimen that had allowed a young woman who was spinal cord injured to walk again after she had spent four years in a wheelchair.
It's true that most of those who were recovering and walking had the assistance of exoskeletons, walkers, crutches and electrical stimulation, or some combination of these, but we didn't plan to be perfectionists if somebody offered us a chance to walk again. In fact, many of us would gladly settle for the return of bowel or bladder control, a semblance of our past sexual function, or even a bit more use of our hands.
The next bit of news regarding paralysis or stem cell research was not as encouraging. In 2001, the Bush administration, reacting to the concerns of factions who were worried about the source of stem cells possibly coming from newly aborted fetuses, changed the rules to allow research using only stem cell lines that were previously in existence. Despite this setback, research continued so our hopes for a cure have continued as well.
Imagine our delight when, in 2004, California voters approved the creation of a $3 billion fund for stem cell research projects at California colleges and universities. The new law, the California Stem Cell Research and Cures Act, resulted in the creation of a new statewide agency -- the California Institute for Regenerative Medicine (CIRM)
-- that is dedicated to funding research grants at the state, national and even international levels. That agency has awarded over $70 million to stem cell researchers so far, with more grants being distributed each year. Surely it should only be a short time before we were all able to be walking again: Or so we thought.
The next development was also positive, as President Obama reversed the Bush restrictions on the source of stem cells once he took office.
There have been successes in many areas, but there are few consistent examples of any treatments that reverse the damage that spinal cord injuries and diseases, as well as other degenerative neuromuscular conditions, have done to our paralyzed human bodies. We continue to wait patiently while scientists apply their collective knowledge to make it possible for many types of animals to recover and even walk again.
Such success fuels the hope that we might be included one of these days, and when the time comes we would only ask that we be given a place in that line. We are still waiting, with a little less patience than in the past.
© 2012 Michael Collins