As SCI Research Advances, Therapy Must Be Accessible

It’s an exciting time for spinal cord injury (SCI) science and research.

The last 12 months have seen breakthroughs in laboratories and therapy gyms around country, and have led to papers published in some of the most reputable publications in the world. SCI foundations and medical organizations are aggressively pursing funds to finance research they hope may bring them closer to the cure for paralysis.  Directly linked to that cure, should it ever come, will be the need for an incredible amount of rehabilitative therapy.   Long-term therapy that, in the current health care system, is nearly impossible to receive.

To be clear, the “cure” for paralysis is not around the corner.  The scientific community is nowhere close.   Strides are being made however, in discovering some of ways the nervous system works.  Scientists and doctors are embracing neuroplasticity, the concept that the nervous system is not necessarily irreparable, but in some cases can “learn” to retrain itself over extended periods of time. 

Right now, scientists are witnessing long-distance axon growth (transmission lines of the nervous system) in SCI models.  They’re studying the transplant of neural stem cells into SCI patients.  They’re even investigating ways to use technology to route signals from the brain past injury levels.

And, in April, researchers from the University of Louisville and UCLA announced the biggest news of all.  In a study that made headlines worldwide, four men who had been paralyzed for years (pictured above) shocked their own scientists when they re-gained bits of voluntary movement as a result of epidural stimulation of the spinal cord.  Each man had a stimulator surgically implanted in his spinal cord, that when turned on, mimics signals from the brain.  Movement was expected.  Electricity stimulates the cord, which stimulates the muscle.  Voluntary movement, however, was what shocked the world.   With the device turned on, all four were able to move muscles in their hips, ankles, and toes on command.

As exciting as these breakthroughs are for the SCI community, they still don’t represent a “cure”.  The four men only experience movement when the stimulation device is turned on, and that movement is minimal.   Much more research is needed, and the study resulted in more questions than answers, but it is without question the start of something exciting in the field.

But, lost in the headlines of the results, is the time, preparation, and access to therapy that the four men needed to be eligible for the procedure and for the procedure to be successful.

These are not four guys plucked out of their chairs 3 years post injury. All four had been participating in unique and aggressive wellness programs at facilities in the Christopher and Dana Reeve Foundation NeuroRecovery Network. 

DustinCrop2Dustin Shillcox is one of them.  I met Dustin shortly after his spinal cord injury, two  years before he was selected to be one of the fortunate four in the study.  Dustin and I were both injured in 2010.  Like myself, he attended Neuroworx in Utah, one of the few places in the country where aggressive, long-term therapy is accessible after injury. Dustin and I rehabbed together at Neuroworx nearly every day for the better part of 2011 and 2012.  And, we both participated in the 2012 Kentucky Derby Mini-Marathon by walking / rolling segments of the race with the Reeve Foundation.

Dustin, and the other three individuals selected, had to meet specific criteria (injury level, motor complete, time after injury, etc.) to be eligible for the study.  Once selected, they were also required to participate in 80 Locomotor Training sessions before the procedure.   Eighty sessions! Just to prepare.

After the devices were implanted in their spinal cords, therapy ramped up.  For more than a year, daily sessions lasting for hours were underway.  Different areas of their legs and core were alternately stimulated.  Voltage and intensity changed.  Controlled movement and standing was practiced.  A myriad of tests and exercises were repeated over and over again.  In time, with the stimulation turned on, movement and endurance improved.DustinLiftingLeg

When the results hit the media last spring, most spinal cord injured people had the same thought: “How do I get that implant?!”

But, in spite of what it may sound like, this study and the results were never about a “cure”.  It was, and continues to be, experimental research exploring how the nervous system works. It won’t be anytime soon, but maybe someday implanting electrodes into the spinal cord will be a part of the rehabilitation process.   That sounds promising – but there’s a glaring problem.

Remember that Dustin had to take part in 80 intense therapy sessions before the procedure, and continued daily visits after the procedure for more than a year. To put it in perspective, most SCI patients receive a grand total of 30 outpatient physical therapy visits per year  – if they’re lucky.   Therein lies the problem. 

Even if epidural stimulation, or any other neurologic breakthrough, advances to a point it becomes commonplace, a complete change in the policy of outpatient therapy needs to take effect.

Maybe advances in stem cell research will continue, and methods to safely re-grow neurons will be discovered.  Maybe technology will advance to the point signals from the brain can be routed straight to the extremities. 

Even if a magic wand made a cure available tomorrow, long-term rehabilitation programs would need to be available for there to be a benefit.

Right now those programs do not exist in most communities.   

Fortunately, a paradigm shift is coming.  There are a handful of facilities around the country that understand the need for long-term rehabilitation and wellness for individuals with neurologic injury.  

NeuroHope is creating one in Indiana. 

Not only so programs are in place for discoveries in the future, but so programs are in place for those that need it now. That’s our mission.  With your help we will get there.

Learn more about epidural stimulation, and other SCI research here.

Photo courtesy: Christopher & Dana Reeve Foundation, Esquire.com