CODI: Cornucopia of Disability Information

Welcomed New Perspectives in Meeting the Challenges of Living After Stroke

Welcomed New Perspectives in Meeting the Challenges of Living After Stroke

Hilary Siebens, M.D.
Assistant Medical Director, Department of Physical Medicine
Cedars-Sinai Medical Center
Assistant Clinical Professor of Medicine
UCLA School of Medicine

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Summary of Presentation 

Before I start to talk, everyone in the audience please stretch your arms,
legs, whatever you wish. It's just before lunch. You have been sitting all
morning. Our brains need periodic stimulation from body movements to keep us
awake!

I will show you some slides of a wonderful year I spent in Africa
volunteering at a small missionary clinic. It was there, during my junior
year in college, that I decided I wanted to become a doctor. In that clinic
I had several amazing experiences that tie in directly with the positive new
trends I see in medicine today -- trends that will potentially make living
with a stroke easier than ever before.

The Mind and Body as Self-Healing

The setting of my African work was in Ethiopia, near the Sudan border. The
tribe -- the Surma -- was extremely friendly and had an excellent, sometimes
racy, sense of humor. They had no wheel or written language and survived off
meager rain and stream water supplies and crops they grew.

In running the clinic, we found that burns were a rather common problem.
Accidents to children around the open fires led to injuries like burnt,
infected feet from which toes would fall off. Despite these horrible wounds,
the children's bodies would heal themselves. This proved to be lesson #1:
The human body has an amazing capacity to heal itself.  Up until that
African experience, I had never thought seriously about how the body can
heal itself. In the West, we tend to do so many things in the face of
illness that it is easy to forget that our bodies themselves have tremendous
healing potential. (The journalist Lynn Payor has written a delightful and
provocative book, Medicine and Culture, 1988, which compares cultural
aspects of medical practice in the United States, England, France, and
Germany.) Eighteen years after running the small clinic in Surma, I know the
same lesson holds true after stroke. Our bodies can heal to a tremendous
degree after strokes.

Lesson #2 in the clinic was that healing often requires improvisation. The
Surma presented with symptoms I had never seen before. (I had had no medical
training.) But in the bush, you have to make do with what you have. You try
to be intelligent, to listen, and to be compassionate.

Once a little girl was carried into the clinic by her father.  I had no idea
what was wrong. I took out my Merck Manual. I read. I thought. I had only 12
treatments available. I decided to treat her with anything that seemed
remotely relevant. That included a treatment for malaria, a treatment for
intestinal parasites, and some powdered milk for malnutrition. Four days
later she walked to the clinic. Dumbfounded, I had learned that intelligent
improvisation can, at times, get results. This holds true for stroke
recovery as well. These two lessons learned in Africa have helped me in
assisting stroke survivors during their rehabilitation and beyond. I share
them with all of you because they are hopeful reminders when, at times, only
the negative side of stroke disability is emphasized.

Patient Care Models

There are other reasons to be hopeful that future medical care for stroke
survivors will be even better than it is today.  From my perspective as both
an internist and a physiatrist (a physician trained to specialize in
physical medicine and rehabilitation), I have observed that the patient
model that has been used in American medicine is evolving to match true
patient experiences more closely. During much of this century, medical
technology and biochemistry led to wonderful treatments that kept patients
alive. However, any disability that might have occurred and persisted had to
be ignored since the patient model did not include all domains of human
performance, such as walking, thinking, feeling.

Now the medical literature includes some excellent patient models that will
help us physicians better evaluate and treat all the complex problems that
can happen after a stroke.  Now any patient problem can be better understood
in the context of three general phenomena: biological aging, disease
processes, and life style. Any disability someone experiences, such as
falling after stroke, can be more fully evaluated and treated when viewed
from these three perspectives. The falling may be due to subtle aging
changes that interact with direct effects of the disease -- the stroke.
Also, a sedentary life style with no general exercise after the stroke may
further contribute to falling.

The type of disability someone experiences is related not only to changes in
body physiology; for example, from diabetes.  Disability can also involve
problems with mobility and other aspects of physical performance as well as
with social roles.

Another important change in the medical perspective is that time plays an
important role in understanding a patient's experience. Over time aging
occurs, causing certain changes in function.  These changes cannot be
modified -- yet! Changing from an active to sedentary life style with poorer
nutrition could superimpose treatable changes. Finally, an acute illness
could cause a sudden decrease in function that will have reversible, and
perhaps non-reversible, effects on function. As persons age with strokes,
all these factors can play a role over the course of time.  Understanding
these factors, and treating what can be treated, will progress in the years
ahead.

Roberta Treischmann wrote an excellent book on this theme, Aging with a
Disability (1987). In interviewing persons with spinal cord injuries dating
back 30 to 40 years, she learned that many of them had felt abandoned by the
medical community after their acute treatment. Fortunately, in the current
medical literature more emphasis is being placed on chronic problems and the
need for medical assistance for persons over the entire span of time that
the disability exists.

Another hopeful trend is that the model of the brain that is being taught is
becoming increasingly more complex. Marsel Mesulam, in his excellent text,
Principles of Behavioral Neurology (1985), recognizes that the brain
provides complex integration between our external environment and our
internal body environment. The brain interfaces the extrapersonal space we
occupy and our internal space. Information comes into the brain through the
senses and interacts in a complex manner with past memories, and we then
respond in some kind of complex motor pattern, if we choose to act. At other
times we will just experience a complicated emotional, internal response.

With this view of the brain, it is clear that strokes will affect this
activity differently. Sensory input may be a problem, processing information
may be off, being able to perform the motor output may be difficult.
Rehabilitation personnel are becoming more and more expert at understanding
these problems and explaining them to patients and their families.

New Research Trends

Several beneficial trends are occurring in medical research.  First, more
studies are beginning to evaluate the effects of treatments on patients'
emotions and functioning, not just on whether they survive or whether their
disease is cured. As a result, more health care professionals, in addition
to rehabilitation professionals, will understand how a patient can function
despite whatever illness he or she may experience.

Stroke research is evolving through animal and cellular studies in which the
effects of lack of oxygen are being increasingly studied. Potential new
medication treatments are being tried, but as yet none are ready for use
since data are not yet available as to their benefits and dangers.

Studies will soon be available to clarify how rehabilitation services are
distributed nationally and how they might be improved. We still do not know
what are the best and most cost effective rehabilitation methods for stroke
survivors. Stroke prevention is being heavily studied and national publicity
about stroke prevention is increasing.

Exercise and aging is a specific area of my own research.  Older persons can
benefit from adding exercise to their weekly routines. It appears that any
type of exercise is better than nothing. If persons were simply to move more
than usual, benefits could occur. Educational materials are increasingly
available to help adults understand the basic principles of exercise and
what it can accomplish. A good example is Prime Moves: Low Impact Exercises
for Mature Adults by Diane Edwards (1992).

In rehabilitation research, more attention will be paid to wheelchair
seating. For persons who use wheelchairs, especially those who sit in
wheelchairs for long periods, comfortable seating systems are essential.
More attention will be paid to this for stroke survivors now that our
society is beginning to recognize the number of people who have some type of
disability.

Needs for the Future

A longstanding need that is just starting to be met is communication between
stroke survivors and other persons who have had similar experiences. A
conference like this helps to foster such networking. In the medical
community we can help you in certain ways. But one kind of support can come
only from peers who have had similar experiences. I see this networking as a
key source of help once a stroke survivor recovers from the immediate
challenges during the first weeks or months of stroke. Networking can help
for the months and years that follow.

Congress passed funding to support the development of basic guidelines for
the care of common health problems in the United States. One of these
guidelines, now in preparation, deals solely with stroke rehabilitation. As
a member of the expert panel writing these new guidelines, I am encouraged
that they will be widely available to the public.

To continue these gradual improvements, I think there will be a role for as
many of us as are interested. Things have started to change in the medical
community. Many physicians have not yet been educated about diagnosis and
management of disabilities. This is a complex process. Have patience with
physicians if yours are unfamiliar with your disability. You can have a role
in educating them about your concerns as you learn more from other resources
like this conference.

While the medical community is working at improving diagnosis and management
of disability, the lay or non-medical community will be helping in many ways
-- networking, support groups, legislation. The insurance industry will need
better education about cost-effective management of disability and how best
to package rehabilitation benefits. Common sense suggests that the right
kind of rehabilitation care and education up front will be the least
expensive in the long run. Problems will be avoided and patients will learn
from the start how best to manage.

There still remain challenges for those of you surviving, aging with your
stroke. I do think that the positive trends I've described are real and will
lead to improvements for all of us in the years ahead.

__________________

Questions and Answers

Question: What about efforts to increase the blood flow to the brain after
stroke?

Siebens: During acute strokes, research is being done now on TPA, or tissue
plasminogen activator, a fancy term for a type of drug that helps dissolve
clots. Those studies are ongoing, but no clear answer is out yet to my
knowledge.

One other thing to keep in mind is that evidence suggests that good, regular
exercise may be associated with better blood flow to the brain, during the
exercise, that is.  This may be associated with better reaction times and
better brain function overall.

Question: Are you aware of what the other Hillary [Hillary Rodham Clinton]
is doing in Washington?

Siebens: I don't know the details -- political planning and health care
planning aren't my areas of expertise. The medical community is apprehensive
about the changes that might be occurring. We are facing very serious
problems involving limited money and a huge national deficit. Whatever
decisions are made in Washington, my perspective is that we are going to
work with the decisions and work hard for the best possible outcomes.


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I see ways we can improve the situation regardless of what the decisions
are. There may not be as much money for certain benefits. We'll have to have
trade-offs.  Given the national stroke rehabilitation guidelines that are
about to be published, policy makers and the public as a whole should become
more aware of the issues. This may lead to more informed decision-making by
all of us.

Question: What is managed care likely to mean to stroke survivors?

Siebens: It depends what the people running the managed care programs decide
to do.  Managed care is here to stay in Southern California. It is becoming
extremely competitive and there are pressures to cut costs. Managed care may
become more accountable for the whole package of care over time rather than
for more isolated parts of care. To the extent this happens, care may be
more coordinated.

On the other hand, I am told that managed care companies have still not
determined exactly how disability and rehabilitation care in general will be
dealt with. We will have to wait and see.

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Resources:

Stroke Association of Southern California, 2001 Barrington Ave, Suite 308,
Los Angeles CA 90025. (310) 575-1699.

Books:

Edwards D, Nash K (1992).  Prime moves: Low impact exercises for mature
adults.  Garden City Park, NY: Avery Publishing Group.

Josephs A (1992). Stroke: An owner's manual. Amadeus Press, PO Box 13011,
Long Beach CA 90803.

Mesulam M (1985). Principles of behavioral neurology.  Philadelphia: F. A.
Davis.

Payor L (1988). Medicine and culture. New York: Penguin Books.

Treischmann RB (1987).  Aging with a disability.  New York: Demos
Publications.