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Orthotic Care of Adult CP Patients: The Bottom Line
By Judith Philipps Otto Where to find the help--the answers for adults with
cerebral palsy who slip through the cracks of our current care
system?
 As in the instance of polio, the real answer,"
says Murray Goldstein, DO, MPH, medical director
for United Cerebral Palsy, "wasn't better iron lungs, but
preventing it in the first place. So we deal with both primary and
secondary prevention of cerebral palsy: primary prevention gets rid
of the factor that caused the brain damage in the first place, and
then we ensure that it doesn't occur again. That's the ultimate
answer. We've got a long way to go, but we're slowly nibbling away
at it."
It is understandably difficult to try to find a cure for as many
different types of causes as we have identified for cerebral palsy,
but as Goldstein points out, it is also improbable that there will
ever be a single cure for the many and varied types of cancer
either.
This brings us back to the issue of orthotic management.
Possibly we might explore new applications for existing orthoses or
develop new ones, but again Goldstein explains that orthotics is an
area where there has been extraordinarily little research, and most
attempts are essentially trial-and-error, driven by bioengineers
rather than orthotists.
"We've got to remember the primary reasons for an orthosis to
begin with: (a) to protect, such as stabilizing a
fracture during healing; (b) to prevent deformity,
such as stretching braces worn while the person sleeps, to help
prevent muscle contractures; and (c) to
improvefunction--the most common
application."
A person who attempts to walk with a deformed body part
necessarily uses a tremendous amount of energy to ambulate,
Goldstein explains. This is a new area of research where new
information is only now beginning to be collected and
understood.
A multitude of orthoses is already available, many still in the
hands of bioengineers trying to improve them. But there will always
be a place for a new orthosis that better serves the four
requirements listed above.
The continuing challenge to the orthotist is going to be the
selection of the appropriate device, which at best is a means to an
end rather than the end itself, notes Goldstein. Today's orthoses
are very specialized, and should be chosen with care to ensure that
the orthotist is using the right intervention for that particular
dysfunction, Goldstein reminds us. "That's the key issue. The
second is to periodically evaluate whether it is doing its job.
"Through appropriate intervention and lifestyle, it's very
important to maintain the function that you've got--while also
superimposing an attempt to improve function. The Number One rule
is simply 'Do NOT Go Downhill!'"
Can such patients hope to improve?
"Much is dependent on a lot of variables but we can all do
better. You can cook better, you can run better, you can read
better, you can dance better--but it means that you've got to work
at it. Likewise for the person with cerebral palsy: They can walk
better and they can breathe better--but they've got to work at
it."
Janet Lord, MD, Berkeley, California, advises
orthotists to be careful to employ stronger materials as their
patient's age. Some of the flexible braces that work very nicely
for children break in the face of adults' weight and activity
levels.
Lord also observes that when children get to be teenagers, they
often reject their braces "for a lot of teenage-type reasons--they
don't look nice, the other kids don't have them. At about age 25,
that goes away. If the brace helps them walk, they're a lot more
willing to take that back again. So it is worth revisiting patients
somewhere in their mid-20s because their psychology has changed.
And that's worth looking at."
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Joyce M. Engel, PhD, OT, University of Washington School of Medicine |
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Joyce Engel, PhD, OT, University
of Washington School of Medicine, who is studying the pain in
people with disabilities, advises orthotists to be especially aware
of its impact on their patients. "Ask if the patient is having pain
overall, what makes it worse, what helps, and then specifically ask
if the person has pain with donning and doffing a prosthesis or
orthosis--and then look at what modifications could be done."
Even just giving patients Tylenol® or a modality
application such as heat might relieve some pain before the person
is fit with a device, Engel points out--which might then relieve
muscle tension or any kind of postural guarding that the person
does, thus helping to obtain a better fit.
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Carl Gunderson, MD, formerly with Walter Reed Army Medical Center |
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Deputy Director of the United Cerebral Palsy
Research and Education Foundation Carl H.
Gunderson, MD, formerly chief of Neurology at Walter Reed
Army Medical Hospital, cites traditional laws of treatment and
therapy attributed to Robert F. Loeb, MD, a celebrated professor of
medicine at Columbia University College of Physicians:
- Try not to do any harm.
- Try to do some good.
- If what you're doing works, keep doing it.
- If what you're doing doesn't work, try something else.
- Avoid surgery when possible.
"I don't know that you'll ever find them in print," Gunderson
laughs, "but those rules are basically pretty good advice. I have
seen more medical mishaps from folks who didn't follow these
common-sense rules than I have from any overt mistakes that people
have made.
"Sometimes it's simply that the science is important, yes--but
every individual is still his own biological system. If it works,
it works." 
Table Of Contents - September 2005
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