I became paralyzed in 1973. There was certainly research going on in the realm of spinal cord regeneration at the time, but it was nascent, to say the least. Science had yet to closely identify the microscopic physiological changes that occur due to and following trauma to central nervous system (CNS) tissue—which famously does not recover on its own.
Which explains why the majority of people with spinal cord and brain injuries do not make full recoveries. Some recover because their paralysis is a result of shock to the cord, which is temporary, rather than there being physical damage. It also turns out that we don’t need 100% of our spinal cord axons (long, very thin nerve tissues that carry signals between neurons, damage to which disrupts the flow of impulses to and from the brain) to be carrying nerve impulses. The CNS has some redundant design going on, so some people make significant recoveries with a sufficient portion of the cord communicating.
Nonetheless, most people make nominal if any recovery, which is why there’s even cause to contemplate a technology like eLEGS.
Now, thanks to the phenomenal ability of medical technologies to observe the body’s processes at a minutely detailed level, researchers have a very good picture of the impact of CNS trauma at a molecular level. And they know a lot about what follows trauma—the body calls out the clean-up crew which tends to take some good cells along with it, and the body’s natural inflammatory process which always follows trauma blocks microscopic blood flow causing even more cell death.
For starters. It’s an immensely complex thing. And for all they’ve learned and achieved (the growth of spinal cord axons, for one), no one has formulated a demonstrably reliable therapy that therapeutically restores function in human beings. Certainly not anything that would pass FDA muster.
It seems to be a different story with rats, but that’s uh, another story.
The difference between 1973 and now, thanks to the advances in science, is that, back then (in my day) there was little if any cause to hope for a spinal cord regeneration therapy in my lifetime. Now, it’s considered just a matter of time and money (the actual amounts of which remain indeterminate).
We old-timers had no cause to hope for a cure. Our priority therefore became entirely focused on adaptation, finding out how to live with paralysis for the long haul. Just get on with it. Walking is not an option, it’s not going to be an option (having tried the ridiculously clunky and limited braces and crutches approach), and it’s just a distraction to wish it were an option. I’ll never lift a truck with my pinky, and I’ll never get it on with Jennifer Aniston. Why dwell on the impossible?
Someone with a CNS trauma that happened later, circa the late 80s and beyond, have a different psychological orientation to the question of walking. Especially after 1995, when Christopher Reeve broke his neck falling off a horse. He jumped into the fray (metaphorically speaking, of course) with dramatic statements that he would walk within five years. He eventually fessed up that he was using his Julliard training in drama (my metaphor) to stir up the fundraising for research.
He was right about the need for money, but he did a disservice to some people who responded to their spinal cord injuries by saying, “Christopher Reeve says I’ll be walking in a couple of years, so why should I adapt to the wheelchair?” The people who wanted to live all the life they could didn’t go there. The people who doubted their capacity to adapt—or were just so deeply pissed off or despairing about their injury—had an easy out.
Now there is some balance. Knowing that the research is progressing, people with more recent trauma rightly get that they want to keep their body in the best possible shape for a future therapy. That means stretching to maintain range of motion, and using devices like a standing frame to load their bones so they remain strong enough to support their body weight. Researchers will also tell you that the best candidates for future regeneration therapies are the people who are in good spirits. Living well will be a criteria. Sitting around being pissed off and depressed will not do the job, no matter how effective (efficacious?) the therapy.
As for Reeve, he and his wife Dana have left behind a vibrant organization that continues to fund research while also investing heavily in quality of life. I honor their work (and in the interest of full disclosure, they sponsor me to speak at universities and rehab centers around the U.S.).
I expect the latter group, having let go of the impetus for walking, to be less likely to be drawn to eLEGS. It might not be an option for them in any case; they are also more likely to have significant contractures in their hips and legs, precluding being able to stand upright without a surgical release. (This would describe my situation, after 38 years of sitting and living the rest of my life so intensely I didn’t keep up with the stretching.) The ability of their bones to carry the weight of their body is another individual by individual open question.
The former group—if we are to imagine a scale with two extremes at either end—are totally psyched about eLEGS. They want to walk. Given the state of the research, they never fully let go of their orientation to walking. They want to maintain their bodies for the coming regeneration therapy and rehabilitation process. They are as likely to see eLEGS as a way to keep them ready for the solution which gets them walking without an exoskeleton as they are to be excited about its allowing them to walk in the meantime.
It’s a generational thing.
Berkeley Bionics’ Blogger Gary Karp is an author and speaker on what he calls the Modern Disability Experience. His work supports people making a recent adjustment to paralysis, and he helps business and government clients recognize and embrace the historic emergence of people with disabilities as employees. Learn more at www.moderndisability.com.