Resource Finder at Kennedy Krieger Institute
A free resource that provides access to information and support for individuals and families living with developmental disabilities.
For years, people who suffered spinal cord injuries were told that the first six months of their recovery would paint an accurate picture of how they would live the rest of their lives. If a patient recovered any movement, it would probably be in those first few months and, nearly all experts believed, improvement after two years was impossible.
"Impossible" is not a word that John McDonald accepts. A neurologist who has achieved worldwide acclaim as the doctor guiding the recovery of "Superman" actor Christopher Reeve, Dr. McDonald has revolutionized rehabilitation for spinal cord injury and paralysis through an "activity-based restoration" program that combines specially designed rehabilitation therapies and advanced restoration technologies to optimize recovery of function and maintain physical integrity and overall health.
His work at Washington University in St. Louis has focused on adults with spinal cord injury, but holds great promise for children. In September, he moved his practice to Kennedy Krieger Institute, one of the world's leading neuroscience institutes for children and adolescents with disorders and injuries of the brain and spinal cord.
Dr. McDonald's work will complement current research and treatment programs at the Institute and enhance the care of children in KKI's rehabilitation programs, such as those recovering from traumatic brain and spinal cord injuries as well as children with cerebral palsy and other motor disorders. Also joining the KKI team is Dr. Cristina Sadowsky, a spinal cord injury neurorehabilitation specialist physician. Dr. Sadowsky will lead the national and international activity-based restoration (ABR) therapy program and help direct research. "Dr. Sadowsky has a passion for advancing the lives of individuals affected by paralysis," says Dr. McDonald.
Dr. McDonald and his team will build a major new center dedicated to restoring function in individuals who are paralyzed, with a focus on individuals with longstanding paralysis. It will become the first center in the world focused on the study of spinal cord repair in children. The center will be unique in combining advanced clinical neurorehabilitation treatment, basic science laboratory investigations of mechanisms of regeneration and critical proof of principle testing in multi-center clinical trials. Says Dr. McDonald: "We are anticipating a paradigm shift in the treatment of disorders of paralysis, from primary hospital-based, time-delimited rehabilitation, to longterm, home-based, life-long neurorestoration therapies. KKI is uniquely positioned to champion this paradigm shift.
"Our clinical approaches have shown that function in individuals who are paralyzed can actually be restored through patterned physical activity such as cycling or walking movements," Dr. McDonald says. "Bringing this approach to a world-class organization like Kennedy Krieger helps realize the dream of improving the lives of children around the world who have spinal cord injury and paralysis."
Traditional spinal cord injury rehabilitation programs have focused on helping individuals learn ways to compensate for disabilities thought to be irreversible. With activity-based restoration programs, therapists create care programs based on the premise that patients may be able to actually recover function. The method relies on the principle that the nervous system requires patterned neural activity to maintain plasticity and optimize spontaneous regeneration.
Functional electrical stimulation (FES) allows individuals to exercise in ways their injuries would otherwise prevent. One method uses a computer to send electrical messages to a patient's legs, signaling the leg muscles to contract and pedal a specially designed bike. Dr. McDonald and other specialists believe that stimulating normal movements can help regenerate stem cells and help patients' bodies "remember" how to move. Dr. McDonald also expects that, in addition to aiding patients injured in accidents, these techniques could help those with disorders like spina bifida, where the injury happens at birth or earlier.
"In normal development of the nervous system, when cells are born and become differentiated, they do so through patterned neural activity," Dr. McDonald says. "If you disrupt patterned neural activity during this period, you disrupt those processes. Those are the processes you want to occur after injury, a process called regeneration."
An injury to the spinal cord means that the body cannot receive signals from the brain prompting it to action. Electrical stimulation can act as the messenger to the body when the spinal cord cannot, he says. What's more, say Dr. McDonald, "these therapies are great for simultaneously promoting physical integrity, for off-setting the related medical complications paralysis brings. We can help patients have less skin breakdown, infections and osteoporosis, complications which reduce quality of life and are very costly to treat."
Dr. McDonald and his team are researching exactly how activity-based restoration helps improve quality of life for individuals with paralysis, but early clinical experience suggests that it does work. In 1995, actor Reeve was paralyzed from the neck down in a horseback riding accident. At the time, doctors predicted that he would never breathe independently or regain mobility or sensation. After 5 years of activity-based restoration therapies, Reeve can now move several fingers, as well as his arms and legs when lying down or in a pool. He has also recovered his sense of smell and is able to sense pain or touch throughout his body. Perhaps most significantly, he can now breathe on his own for extended time periods, offering independence from his ventilator. Dr. McDonald's team is now completing a retrospective clinical study in 60 adult patients with spinal cord injury evaluating the efficacy of ABR therapies. A trial evaluating the efficacy and cost-effectiveness of ABR therapies in pediatric spinal cord injuries will be launched at Kennedy Krieger in collaboration with the Philadelphia Shriner's hospital.
In addition to his clinical trials, Dr. McDonald will also continue his laboratory-based research exploring the mechanisms of injury and regeneration. Using animal models, these projects are exploring whether certain genetic conditions make recovery from spinal cord injury more likely. This knowledge will allow optimization of ABR therapies and targeted development of drug and cellular therapies to promote cell regeneration.
Kennedy Krieger is already the premier organization for traumatic spinal cord and brain injury rehabilitation in children in the state of Maryland. With Dr. McDonald's program, the Institute is poised to become a global leader in the field, says Institute President Dr. Gary Goldstein. "We already provide state-of-the-art care, but by pursuing a research program and pushing the envelope to develop new therapies, we can attract and care for patients from all over the world," he says.
The new center will draw on the expertise of many members of Kennedy Krieger's interdisciplinary team. In addition, the functional magnetic resonance imaging technology available in Kennedy Krieger's F.M. Kirby Research Center is ideal for examining the broken connections in the brain caused by spinal cord injuries as well as any measurable improvement in neural activity as a result of therapy.
"We really need a full-spectrum approach including physical and occupational therapy, speech-language pathology and social workers," says Dr. McDonald. "We also need experts in inpatient rehabilitation. It's wonderful that Kennedy Krieger has a team in place that functions well."
To help implement the unique techniques of the activity-based restoration program, Karen Good, who has worked with Dr. McDonald for nearly eight years, has joined Kennedy Krieger as the Institute's new Director of Physical Therapy. Formerly a neurobiologist, Ms. Good went on to get her training in physical therapy before working with Dr. McDonald in St. Louis. At Kennedy Krieger, Ms. Good and her team will develop measurement tools to help other physical therapists realize the functional benefits of ABR and how they correspond with fundamental changes taking place in patients' nervous systems.
Ms. Good plans to introduce aquatherapy to Kennedy Krieger, using the Olympic-size swimming pool at the Institute's Greenspring campus. "A pool is the closest thing to an anti-gravity environment that we have on Earth. Being able to pursue something like swimming, where the patient is in charge of his or her own mobility, is very empowering," says Ms. Good.
Because activity-based restoration depends on long-term, repeated movements, patients require home-based care in addition to the six to eight weeks of therapy they typically receive following their injuries. The program at Kennedy Krieger will emphasize training caregivers to incorporate activity-based therapy into homecare routines, Ms. Good says.
Dr. McDonald has a long history of working with children with spinal cord injuries, and has observed that young patients show greater improvement than older ones. He believes that several things account for the better recovery ability, including genetic predisposition and childrens' no-quit attitude, "Children are not as gravitationally challenged as larger adults," he says. ABR therapies can be accomplished by a single individual helping the child's movements, a task in adults that requires multiple helpers.
"But the biggest difference with children is that they don't know they're not supposed to be able to recover," Dr. McDonald says. "Adults might try something twice before they quit. Kids are amazing in that they'll try something a thousand times, fail and never give up."