Recovery is possible

For the first time, research has found a way for people living with chronic paralysis to regain what was lost. Until now, therapy has been limited to helping people live with what was lost 

In April of 2014, Dr. Susan Harkema was featured on the Today Show and in numerous other national and regional news stories to talk about the stunning findings from her research on spinal cord injury recovery using epidural electrical stimulation.

One word describes this groundbreaking research: Hope.

Hope for the nearly six million Americans living with paralysis.

Click Here for Recovery Stories.

Q: How does EPIDURAL STIMULATION WORK?

Four young men who have been paralyzed for years achieved groundbreaking progress – moving their legs – as a result of epidural electrical stimulation of the spinal cord. New research published in the medical journal Brain documents the effectiveness of epidural stimulation as a therapy option for chronic motor complete spinal cord injuries.

In the case of this research, epidural stimulation is the application of a continuous electrical current, at varying frequencies and intensities, to specific locations on the lower part (lumbosacral) of the spinal cord. A 16-electrode epidural spinal cord stimulator, commonly used in medicine today to treat pain, was surgically implanted over the spinal cord at T11-L1. This location corresponds to dense neural networks that control movement of the hips, knees, ankles and feet.

The stimulation from the implanted device mimics the signals normally transmitted by the brain. This restored stimulation then re-engages the spinal cord with its neural network below the point of injury.

This research builds on an initial study, published in the May 2011 edition of The Lancet, which evaluated the effects of epidural stimulation in the first participant, Rob Summers, who recovered a number of motor functions as a result of the intervention.

Epidural stimulation represents a breakthrough in the scientific and clinical understanding of control of movement and the possibilities for the most severely injured. Rob Summers, who had a severe spinal cord injury received the implant in 2009 and began the experimental training that accompanied it. Today, three other individuals who have undergone the treatment are experiencing similar, unexpected yet significant results.

The research team reports that three individuals were able to make voluntary movements when epidural stimulation was turned on; results were seen immediately after implant -- even in two who were diagnosed with a motor and sensory complete lesion.

Before this research study, functional electrical stimulation has been used to activate paralyzed muscles in people with spinal cord injuries.

But these new neuromodulation studies are not about stimulating muscle. In this new research, epidural stimulation activates nerve circuits in the spinal cord, substituting for nerve signals that would normally have come from the brain to modulate these spinal networks. Stimulation of the spinal circuitry itself activates what scientists call a central pattern generator -- a network of nerves that are able to initiate stepping function without input from the brain.

“We don’t have to necessarily rely on regrowth of nerves in order to regain function. The fact that we’ve observed this in four out of four people suggests that this is actually a common phenomenon in those diagnosed with complete paralysis,” said Dr. Reggie Edgerton, who has been conducting fundamental research in this area for 38 years and is a member of the Reeve Foundation’s International Research Consortium on Spinal Cord Injury.

To learn more, read published article, “Altering spinal cord excitability enables voluntary movements after chronic complete paralysis in humans” in Brain, A Journal of Neurology, April 8th, 2014   Read Article

Or visit: Christopher & Dana Reeve Foundation

 

Q: What is locomotor therapy and why is it important to recovery?

Much media attention has focused on Jack and his ABLE therapy sessions at Courage Kenny Institute.  ABLE (Activity-Based Locomotor Exercise) uses emerging research to customize interventions such as body weight supported locomotor training and functional electrical stimulation to maximize neurorecovery by providing input to the central nervous system and challenging muscles below the level of spinal cord injury.

"Locomotor Training" or therapy uses a treadmill to mimic the movements of walking to help develop neural connections, in effect re-teaching the spinal cord how to send signals to the legs to walk. This technology has helped several paralyzed patients walk again.

According to Dr. Susan Harkema, who is leading the epidural stimulation research team at the University of Louisville's Kentucky Spinal Cord Injury Research Center, locomotor training is a cornerstone to recovery of function below the level of injury and to reducing secondary complications and improving quality of life.

Dr. Harkema and her colleagues have pioneered research and practice of activity-based therapies, specifically locomotor training, to promote recovery after spinal cord injury.  Dr. Harkema is the National Director of the Neurorecovery Network (NRN) supported by the Dana and Christopher Reeve Foundation.

The same type of locomotor therapy that Jack participates in at Courage Kenny Institute in Minnesota is an integral part of Dr. Harkema’s epidural stimulation research project at the University of Louisville.  Courage Kenny is one of the 12 member institutions that make up the national Neurorecovery Network. 

Among its many benefits, locomotor therapies improve health and fitness in people of all ages with paralysis so that they will be healthy and strong enough to benefit from new recovery research and the clinical application of new scientific findings.

Locomotor training is used for people with brain and spinal cord injury (SCI), stroke and other neurological disorders.  Many people with SCI, regardless of time elapsed since their injury, have improved their walking after receiving locomotor training in research programs and clinics in Germany, Canada, Switzerland, and the United States.  Although not widely available in clinics in the United States, locomotor training is standard therapy for people with an incomplete SCI in Germany, Norway and Switzerland 

Although no two patients respond to the therapy in exactly the same way, all NRN patients experience change as a result of locomotor training.  These changes can include improved recovery of independent walking and/or improvements in overall health and well-being.  For some, health improvements can include better cardiovascular and pulmonary function, increased bone density, decreased spasticity, a decrease in the likelihood of skin lesions and improved glucose intolerance.

To learn more about locomotor training click here.

Q: How is the BEL13VE Foundation supporting this work?

We've been following Dr. Harkema and her study for quite some time. In fact, the Jack Jablonski BEL13VE in Miracles Foundation raised funds for Dr. Harkema and her research at our 2013 gala last summer and we continue to raise funding for this research work.

We even had the pleasure of hosting Rob Summers, the first participant to have had the epidural stimulator implanted near his spine, when spoke at our 2013 gala. Last December (2013), Dr. Anne Moore (a member of our Board) flew to Louisville with Jack’s mom Leslie to meet Dr. Harkema and Dustin Shillcox, one of the other four participants in the study. While visiting the research center, Leslie and Anne witnessed Dustin moving his legs on command and saw him stand.

Insurance does not cover ABLE program therapies at Courage Kenny Institute for many people in the program living with a spinal cord injury.  Through scholarships, the BEL13VE in Miracles Foundation is providing financial support so that other individuals with spinal cord injuries can gain access to the same advanced therapies helping Jack.

The ABLE program at Courage Kenny currently has a waiting list of longer than a year for people who want to start this important therapy.  Beginning in 2013, the BEL13VE Foundation has been in discussion with Courage Kenny about expanding its ABLE facilities so that more people can start their recovery work sooner.  An announcement on this expansion is planned for later this year (2014).

Q: What needs to be done to bring the EPIDURAL STIMULATION research out of the lab and into clinics?

We're on a mission to bring a sense of urgency to moving this epidural stimulation research forward to a medical trial, and then ultimately into clinics so that everyone living with a spinal cord injury, or paralysis from any cause, can benefit from the results.

It generally requires 100 human research participants to seek FDA approval for a medical trial on a new therapy. Currently four people are participating in the research.  Another four are joining the research this year, during 2014.  That leaves 92 more to go!

Our dream is to see Jack and others living with paralysis regain what they've lost as soon as possible. Currently, Jack is not enrolled in the research study, but we hope and pray that he will be some day, just as we hold hope that everyone living with a spinal cord injury will have this opportunity.

Q: What other SCI research work is underway?

“At the present time, other than standard medical care, there are no effective evidence-based treatments for chronic spinal cord injury,” according to Susan Howley, executive vice president for research at the Christopher & Dana Reeve Foundation. “With this [new epidural stimulation] study, the investigators show that their findings about a motor complete patient regaining movement is not an anomaly.”

Finally, there are results.  But epidural stimulation is not the only recovery research underway, and all by itself it will not result in complete reversal of all of the damage caused by a spinal cord injury.

Spinal cord injury (SCI) recovery involves much more than just restoring muscle control (motor function) below the point of injury.  Damage resulting from a SCI affects many other systems in the body.  In turn, recovery opportunities exist for each of these systems and scientists continue to investigate many new ways to better understand and treat spinal cord injuries.

Current investigative research is focused on advancing our understanding of four key principles of spinal cord repair:

  1. Neuroprotection—protecting surviving nerve cells from further damage immediately
    following injury
  2. Regeneration—stimulating the regrowth of axons and targeting their connections appropriately
  3. Cell replacement—replacing damaged nerve or glial cells
  4. Retraining CNS circuits and plasticity to restore body functions

The Epidural Stimulation and Locomotor Training therapies that are the current focus of BEL13VE Foundation funding and support fall into this fourth category - retraining CNS circuits and plasticity to restore body functions.

Much of this investigative research is supported by the National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health (NIH). Other NIH components, as well as the Department of Veterans Affairs, other Federal agencies, research institutions, and voluntary health organizations, also fund and conduct basic to clinical research related to improvement of function in paralyzed individuals.

Many hospitals have developed specialized centers for spinal cord injury care. Many of these bring together spinal cord injury researchers from a variety of disciplines for partnerships regarding basic and clinical research, clinical care, and knowledge translation.

A spinal cord injury is complex. Repairing it has to take into account all of the different kinds of damage that occur during and after the injury. Because the molecular and cellular environment of the spinal cord is constantly changing from the moment of injury until several weeks or even months later, combination therapies will have to be designed to address specific types of damage at different stages of the injury.

Source: National Institutes of Health