I am not a doctor, but I play one every time I attend a conference of experts focused on the state of transverse myelitis. The most enlightening such conference I’ve ever experienced happened a few months ago in Dallas, Texas. The title is a little scary: the 2013 Rare Neuro-immunologic Disorders Symposium, or RNDS, if you can remember that. Hosted by SRNA, Dr. Benjamin Greenberg of UT Southwestern Medical Center and the Johns Hopkins Transverse Myelitis Center, this was a gathering of some of the best research doctors in the world who specialize in our little group of “orphan” neurological disorders like transverse myelitis, neuromyelitis optica, acute disseminated encephalomyelitis (ADEM), and optic neuritis. The two-day conclave was geared to these disorders but had implications for a much larger group – those with spinal cord injury in general. I have one of those – I’m a T-10/12 para – and the fact that it derived from TM doesn’t make the paralysis much different. Different source, same injury. As one of the guest lecturers pointed out, in many cases, “TM = Spinal Cord Injury.”
This version of the recurring RNDS was dedicated to an angle of research that is dear to all of us that fit the brackets above: rehabilitation, repair, and recovery. Yes, recovery, the impossible dream, the unreachable star. The goal is restoring nerve function in the spine. And if you listen to this group, we are well on the way to getting there.
Here was the big message everyone in attendance walked away with: neural restoration is possible. This is actually a mantra we all should learn and repeat daily. To quote Dr. Cristina Sadowsky of Johns Hopkins and the Kennedy Krieger Institute, we are capable of “achieving significant, incremental improvement at any time following injury.” I repeat: at any time. Whether you were injured yesterday or like me, seventeen years ago, you can improve.
How many of you long ago gave up on the idea your condition would ever change? That’s what the doctor no doubt told you soon after your injury. “I’m sorry, son, there is no recovery from this.” Before this conference, I believed that almost as a matter of doctrine. This paralysis is it, I figured. It could only get worse, not better. My sole focus, outside of exercise, has been trying to avoid nasty falls, skin breakdown, and infection. Every time I read in the newspaper about a “breakthrough in paralysis” or some such miracle on the horizon, I turn the page. Years away and too late for an old-timer like me, I’d tell myself. I don’t tell myself that anymore.
One problem, for instance, I thought was intractable: severe contracture, or shortening of the knee muscles, in both legs. My legs are bent at close to 90 degrees and won’t bend back. I have repeatedly been told, “Tough luck, you can’t change that.” Not so, said Dr. Sadowsky and others. Depending on the nature of the contracture, there are both physical and surgical ways of dealing with it. All of a sudden I can imagine my legs being straight again. To me, that would be a miracle.
Straight legs would allow me to leap into many of the other restorative therapies outlined at the symposium. You can lump many of them under the mantle of Activity- Based Rehabilitation Therapy (ABRT). The simplest such therapy, strongly recommended by every doctor in the room is exercise itself. Mood stabilization, pain, tight joints, overall strength and endurance – all are enhanced or relieved by exercise. This relentless drumbeat – “exercise, exercise, exercise” – drives many people nuts. It’s like telling someone overweight to eat less food or an alcoholic to drink less Scotch. But, all whining aside, exercise is critical to your health. It’s an obvious truth and something that will only make you better. In some cases, says Dr. Sadowsky, exercise has been known to “promote functional recovery.”
This leads to a specific kind of activity-based therapy called gait training. Gait training is rehearsing the act of walking by actively simulating it over and over and over again. This can run the gamut from treadmill training, if you are capable, to the complex mind/motor/computer contraption that is used in locomotor training, a whole other conversation. Gait training stimulates the right nerves and teaches you how to walk again without contact with the brain. It all begins with what Karen McCain of UT Southwestern identified as the Central Pattern Generator (CPG). These are neural networks that can produce patterned outputs, like walking, without the brain being involved. Dr. McCain also explained the idea of “learned non-use.” If you don’t use your paralyzed muscles, they figure that non-use is their natural state. Is this reversible? Yes.
In addition to reinvigorating the CPG one way or another, there are also gait improvement experiments involving the much-talked-about drug called Ampyra. Ampyra is already in use with MS patients to improve motor skills. For the first time, there are trials in motion that will judge the effect of Ampyra on TM patients. Here’s where I got a little lost. I know that this has something to do with inhibiting potassium and rearranging the biochemistry of demyelination, which is probably all I need to know. If the pill works, I’ll be down at CVS to pick up my order.
I’m also excited but a little vague about the benefits, some of them mind-boggling, of FES, or Functional Electrical Stimulation. FES, according to Dr. Daniel Becker at Johns Hopkins, can actually stimulate stem cells, which can, in turn, give rise to new neural cells to replace the damaged ones in your spinal cord. Nerve restoration using electrical stimulation? Think about it. Sounds like something out of a Frankenstein movie. Nonetheless, in competent hands, it can produce real change. Even on a physical level, FES combined with exercise can improve muscle strength and flexibility.
ABRT, CPG, FES, plus acronyms that flew right by me, like LINGO – it got a little overwhelming over two days. An English visitor to the conference showed me his ringed notebook, each page stuffed to the edges with single-line scrawling. It was like he was in med school. I’m sure he went home, looked at his frantic notes, and asked himself, “What is this gobblygook?”
I feel remiss in not being able to adequately do justice to half the people on stage and their research and discoveries. It’s not out of disinterest, just limited brain capacity. Worth noting is a here-and-now study, led by Dr. Michael Levy, involving the direct surgical transplant of stem cells into a damaged spinal cord. Also, there is an antibody compound called rHIgM22 that might promote remyelination. Plus, there was a lot of enlightened talk about how to deal with fatigue, bladder problems, and cognitive rehabilitation. Got bladder leakage problems? Ask your urologist about Botox. Yes, the same thing that disfigures celebrity faces could help you.
The immediate things I didn’t forget involved the least amount of specialized expertise. I now take Vitamin D daily and immediately asked my urologist about Botox (he said I wasn’t a candidate). The more involved restorative therapies that seem so promising are not readily accessible, at least to me, and no doubt involve a commitment of time and money that many people can’t make. That’s often the frustration of a gathering like this. With the help of some very bright and caring people, you can see over the horizon. You just don’t know how to get there.
But back to the easily-understood main point: functional improvement is possible. None of these therapies are a magic pill that will get you up and walking tomorrow, but taken as an aggregate, they produce something right now that in and of itself can help you progress: hope. Think of hope as an exercise you must commit to on a daily basis. It may be the beginning of your way back.
~ Allen Rucker contracted TM in 1996 at the age of 51, and was paralyzed from the attack at the T-10 level. Allen published a memoir about his life after getting TM; “The Best Seat in the House.” It is now available in paperback. As his memoir so brilliantly conveys, Allen is on a journey. That journey has taken him into a life as a speaker and an advocate for the transverse myelitis and disability communities. Through his many speaking engagements, his appearance on the Montel Williams Show, and as a contributing writer for ABILITY and New Mobility Magazines, Allen is raising awareness about transverse myelitis. He is the author and co-author of numerous books of humor and non-fiction. “The Sopranos Family Cookbook,” one of three books he’s written about the Sopranos, was a New York Times #1 bestseller. Allen is the chair of the WGA Writers with Disabilities Committee. He lives in LA with his wife, Ann-Marie. They have two sons. Follow him on Facebook and visit his website for more information.