In 2013, Dustin Shillcox became 1 of the first 4 people in the world to be a part of groundbreaking epidural stimulation research at the University of Louisville.  A set of electrodes was surgically implanted onto his spinal cord below the level of his injury and a small power pack was implanted into his abdomen.  When the pack is turned on, an electric current is sent to the electrodes, which stimulates his spinal cord into action.

To help them better understand the circuitry of the spinal cord, researchers hoped the stimulation would translate to activity through the nervous system.   Incredibly, for Dustin and the three other spinal cord injured patients in the study, the results went well beyond what researchers imagined.  In all four patients, bits of voluntary movement were restored, sending shockwaves (no pun intended) through the spinal cord injury community.

Building on the developments over the last several years, epidural stimulation research has expanded and major milestones have been met.  The most recent study published earlier this year in Nature and Nature Neuroscience announced unassisted steps took place following the procedure for the first time.  These findings have dominated the conversations of people living with spinal cord injuries who yearn for the ability to walk again with stimulators of their own.

Epidural stimulation is still in its infancy, and in any event, its benefits are about much more than walking.  It’s also about addressing the secondary complications of spinal cord injury, such as blood pressure issues and skin breakdown, and about staying healthy after injury.   And, it involves months of preparation, rehabilitation, and a lifetime of maintenance.

Dustin visited NeuroHope recently to talk about the research, what it means to have the stimulator (which he uses every day), and what it is like to be one of a select few people in the world to have the device embedded into his nervous system.  Watch the video below:

I met Dustin in 2011, shortly after his spinal cord injury, and two years before he was selected to be one of the fortunate four in the 2013 study.  We were both injured in 2010, and we rehabbed together at Neuroworx  in Utah for the better part of 2011 and 2012.

As he mentions in the video above, Dustin and the three participants in the original study had to meet specific criteria to be eligible.  Once selected, they were required to participate in 80 Locomotor Training sessions (stepping over a body-weight-support treadmill) before the procedure.   Eighty sessions! Just to prepare.

After the devices were implanted, 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.

But, in spite of what it may sound like, the 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 participate 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 enough to have a good insurance plan.

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

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

Right now those programs do not exist in most communities.  Hopefully, a paradigm shift is beginning.  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 has created one in Indiana. Not only so programs are in place for discoveries in the future, but so programs are in place for those who need it now.

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