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Christopher Reeve's Lasting Effect on Spinal Cord Injury Field: An Expert
Interview With John W. McDonald, MD, PhD

Laurie Barclay, MD

Medscape Medical News 2004. + 2004 Medscape

Oct. 14, 2004 - To 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 neurologic 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 neurorehabilitative 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.

Reviewed by Gary D. Vogin, MD

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