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Christopher
Reeve's Lasting Effect on Spinal Cord Injury Field: An Expert
Interview with John W. McDonald, MD, PhD
Oct.
14, 2004 — Too many who admired Christopher Reeve as Superman
in the movies, his best starring role was as a superhero
championing the cause of spinal cord–injured individuals. After
a tragic accident in 1994 left him with a complete C2 injury,
Reeve became a patient advocate dedicated to increasing public
awareness, broadening treatment options, and improving
rehabilitation for those with similar injuries. During
intensive participation in "activity-based restoration,"
a novel rehabilitation program based on patterned neural activity
designed to maintain and generate spinal cord cells, Reeve
recovered some sensation and movement years after his injury.
Lessons to be learned from Reeve's spinal cord injury did not stop
with his death this week, as even that highlighted the need for
optimal care to prevent common complications that can become
life-threatening. To
learn more about Reeve's effect on the present state-of-the-art
and future developments in spinal cord injury, Medscape's Laurie
Barclay interviewed John W. McDonald, MD, PhD, Reeve's personal
physician. Dr. McDonald is director of the new Spinal Cord
Research Center at the Kennedy Krieger Institute in Baltimore,
Maryland, and director of the Spinal Cord Injury Program at
Washington University School of Medicine in St. Louis, Missouri. Medscape:
What contributions did Christopher Reeve make to the field of
spinal cord injury management? Dr.
McDonald:
Chris served as a poster boy for this type of high-level injury
that virtually no one ever survives. The rehabilitation books just
don't include people with C2-level injuries. Chris has literally
been responsible for having people with these issues added to the
manual. I think that's one of the biggest contributions that he's
made. In
addition, Chris' personality and approach really changed many of
the barriers that exist for people with spinal cord injuries and
how their injuries are managed. For example, for a long time we
were told that you can't put a ventilator-dependent patient in a
pool for aqua-therapy, and now we know for sure that you can and
we do this quite routinely. If you stand back, it doesn't make
much sense why we don't do certain things — the only explanation
is we've always done things a certain way and created our own
barriers for people who are dependent on ventilators. Medscape:
Are there other examples that would be useful to physicians caring
for patients with spinal cord injury, particularly regarding the
unique features of Mr. Reeve's injury? Dr.
McDonald:
One unique feature that is probably underappreciated is that
injuries are often confined to one or two motor levels. That means
that people don't necessarily need to lose all function at that
level. Say someone has an injury in the cervical region that
affects their hand. There's no good reason why they should lose
all function in the hand based on that injury. Many
times, complete loss of function is the result of inactivity or
the inability to use those muscles. We've learned that if you
strengthen those muscles using advanced techniques like functional
electrical stimulation, patients can show improved function that
we never thought was possible before. So it's often useful to do
biofeedback and functional electrical muscle strengthening,
particularly in muscle groups that are difficult to treat through
traditional rehabilitation approaches, such as the hands,
shoulders, and abdominal muscles, which aren't strong enough to
build up the force needed to generate further strength. Medscape:
What part did Mr. Reeve play in increasing awareness of spinal
cord injury by the public, the medical community, and the research
community? Dr.
McDonald:
I think Chris played one of the largest roles I've ever seen in
raising awareness. There's still a great deal left to accomplish,
even in the medical and research communities. Let me give you an
example. In the research community, many of the people doing
regeneration research have never had experience with an individual
with a spinal cord injury and how that injury affects their life.
Healthcare professionals outside the specialty of rehabilitation
don't often get to experience how an individual lives with a
disability, outside of his acute medical needs. Chris allowed
researchers, members of the medical community, and even lay-level
people to experience this. Medscape:
What was the significance of Mr. Reeve regaining some sensation
and movement, and what role did intensive rehabilitation play in
this partial recovery? Dr.
McDonald:
The significance of Chris' regaining some sensation and motor
movement was substantial, because it overturned the old adage that
most recovery from spinal cord injury should occur in the first
six months to a year, and that if you don't experience recovery
during that period, you simply won't get it after. As
a result of Chris' case, we can throw that adage out the window.
He had the worst-case scenario: injury at the highest level, C2;
no motor or sensory function below that level of injury; no
recovery of function in the first five years after the injury. All
of our clinical experience and all of the literature said there
was absolutely no chance. It's not surprising that no
rehabilitation groups were willing to work with him because it was
considered a guaranteed failure. But
as it turned out, he recovered substantial sensory and motor
function and was able to feel throughout his entire body within
three years of beginning the therapy. He also recovered the
ability to move most of his joints as long as he was out of
gravity in water. He had recovery, which meant it was doable, it
was possible. His experience allowed scientists to believe that
they can overcome these problems. It allowed clinicians to believe
that there are things we can do for people who experience these
severe, catastrophic neurological injuries. Medscape:
What type of rehabilitation did he have that you think allowed
that degree of recovery? Dr.
McDonald:
My personal belief is that activity-based therapies were largely
responsible. These therapies are designed to build physical
integrity. That is, they help maintain muscle mass and bone
density and provide a cardiovascular workout to avoid a lot of the
chronic complications that accompany paralysis. At the same time,
they optimize activity in the nervous system. By the best
knowledge of the mechanisms of regeneration, this in turn
optimizes the body's own ability to regenerate, which we now
believe is much greater than the complete lack of regenerative
ability we assumed 10 years ago. We've demonstrated in animal
models that similar types of activity do enhance regeneration.
We've also seen these approaches enhance recovery of function in a
large group of patients. The real proof of principle, a
prospective randomized trial, is currently being designed to test
that. Medscape:
What was the cause of Mr. Reeve's death, what problems were
encountered in management of the complications leading to his
death, and what does this teach us about the management of chronic
spinal cord injury? Dr.
McDonald:
I wasn't involved in the later stages of Chris' medical care, but
the stated cause of death was cardiac failure, which is the end
stage of most initial causes of death. At the time, Chris was
having problems with skin wounds and related infections. It's
likely that it was either sepsis or pulmonary embolus that led to
the ultimate rapid cardiac demise. Medscape:
Do you think autonomic dysreflexia played some role? Dr.
McDonald:
Yes, I certainly think it played some role, and I think the most
likely possibility was sepsis and a lack of intravascular volume
and the lack of autonomic response to that. Medscape:
Do you think that was in any way preventable? Dr.
McDonald:
I think it's preventable in an ideal world, but I think the lesson
of Chris' death shows the world that we don't need to focus just
on finding a cure. Patients have a lot of problems just existing,
even with optimal care. Optimal care is very difficult to deliver
in these chronic situations, particularly in the home. This is a
problem that occurs daily in patients with spinal cord injuries. I
think that in Chris' case, they did a wonderful job with his
treatment. I know the groups that were involved, and if this was
preventable, it would have been prevented. Unfortunately,
complications like skin breakdown occur even with the best of care
in patients in these settings. It really requires a change in our
paradigm of care delivery to really change these problems. Medscape:
What advances in the treatment of spinal cord injury have occurred
since Mr. Reeve became injured, and what part did he play in
facilitating these advancements? Dr.
McDonald:
The biggest changes in development of new treatments for spinal
cord injury have been in the neuro-rehabilitative realm, in terms
of activity-based therapy. Chris was a single case who galvanized
scientists around the world to refocus their research towards this
goal. Although he's stimulated research across the spectrum, in
many different arenas from the most basic to the most clinical, if
there's one area that stands out more than others it's this
rehabilitative approach. Medscape:
How widespread do you think that approach will become? Dr.
McDonald:
I think it will become very widespread as long as scientists
develop pragmatic methods for implementation. If we continue to
design treatments that require a patient to come to a center three
times a week, they'll never become effective therapies. If we
develop home-based therapies that are deliverable without any
additional caregivers and without substantial time constraint
limitations, we can challenge that goal. Medscape:
What do you see as the future of stem cell research? Dr.
McDonald:
I believe, as Chris vehemently believed, that the role of stem
cell research will be critical in the future, not only to develop
treatments to replace cells, but more as a tool of scientific
discovery. For example, embryonic stem cells are a source of human
nervous system cells, giving us the ability to genetically modify
both copies of the gene. This is possible only with embryonic stem
cells. This is a proven way of advancing science. For example, the
availability of transgenic animals is largely the result of
embryonic stem cells, and that revolutionized science. We have the
same revolution occurring in the tissue culture dish with human
embryonic stem cells that are now hopefully becoming available. Medscape:
Is there anything you would like to add? Dr.
McDonald:
I'm personally very gratified by the day-to-day interactions that
I've had with patients, as well as the opportunity to meet them
halfway in terms of education and learning as a scientist and a
clinician. As we approach every case as an opportunity for
learning, we realize that most knowledge is coming from outliers.
Those cases that either do or don't respond maximally teach us the
most. Clinicians do this every day, and I think if clinicians
educated researchers in this approach, that's filling an important
role that only clinicians can.
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