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Where Are They Now? Orthotic Care of Adult CP Patients
By Judith Philipps Otto What happens to those adorable poster children with
cerebral palsy? They don't fade away. They grow up, they grow old;
and they continue to have cerebral palsy and face its changing
challenges every day of their lives. And yet many of them seem to
disappear. Where have they gone? Isn't there a Volume II--a sequel
to the continuing adventure/drama of their younger
lives?
 To answer these questions, one must first
acknowledge that CP is not a simple condition; it's not even a
single condition. There is much to know about it, and research is
helping us to discover more each day, as we fill in the blanks with
some rather surprising new information. For orthotists to be able
to do their best for the adult CP patient, they will want to know
more about the complex challenges each patient may face -- and the
related factors that affect their attitudes, their choices, their
self-image, and the very course of their lives. Bracing alone,
without consideration of the layers, textures, and colors that form
each patient's life, is not nearly as effective as a bracing
solution that takes into account the complete landscape of
pertinent influences and experiences.
The Problems of CP
The vast majority of children with cerebral palsy will live to
adulthood, agrees Mark P. DiFazio, MD, (chief,
Child and Adolescent Neurology Service) Walter Reed Army Medical
Center. "Adults with CP may have a shorter lifespan; however, this
may not be because of cerebral palsy per se, but because of
co-morbidities. For instance, if you have cerebral palsy, you may
also have epilepsy, which requires treatment with anticonvulsants.
Because these medications can be associated with bony side effects,
fractures and, complications from fractures may occur."
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Mark DiFazio, Walter Reed Army Medical Center |
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It's a chain reaction that spirals downward: A
person who begins with thin bones because of epilepsy, poor
weight-bearing, and orthopedic deformities, is also now at a
greater risk for fracture. Many moderately to severely impaired
adults ultimately make the choice away from independent ambulation
and target more functional mobility instead such as a wheelchair,
says DiFazio. Then, a more sedentary lifestyle may place them at
greater risk for illnesses such asType II diabetes and heart
disease. "There's a real push among exercise specialists to get at
this population with disabilities because it will not only help
their strength and balance, it may also help their cardiovascular
health," says DiFazio.
He points also to associated complications such as progressive
orthopedic disability, which comes with a tendency for fracture
during manipulation by a physical or occupational therapist.
Progressive hip dislocation and then early hip degeneration are
also possibilities, and may cause a need for femoral head
re-section, where the femoral head is actually removed in an effort
to resolve the patient's pain. "Chronic pain as a result of early
hip arthritis is a frequent complaint of many patients with
moderate to severe cerebral palsy," DiFazio observes.
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Duncan Wyeth, Adult CP Patient, Activist |
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Consider another kind of chain reaction that leads
downward: the effect of disability on emotional status and
self-esteem, educational and employment opportunities, social
activities and communication with others, and other important areas
of life. Duncan Wyeth, executive director,
Michigan Commission on Disability Concerns, cites the 2004 National
Organization on Disability (NOD) Harris Survey of Americans with
Disabilities ( www.NOD.org): As a group, people with
disabilities tend to experience a lower level of education and a
higher level of poverty, and a higher level of unemployment, ergo,
less disposable income, and more limited economic access to the
recreational opportunities most likely to contribute to regular
physical exercise, and consequently to their health and
wellness.
"The end result is an exacerbation of loss of range of motion,
loss of stamina, loss of physical functioning among a group of
people who in many ways can least afford to lose those attributes,
says Wyeth, who is a 59-year-old adult with cerebral palsy.
The influence of family and community can also have a vital
influence on the future of the adult with cerebral palsy. "I've
always said that if you are going to have a disability, choose your
parents well," quips Wyeth. "I was fortunate to have parents who
always allowed me to participate in a full range of activities as
if I had not had a disability."
The Variable of Age
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Murray Goldstein, DO, MPH, UCP |
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Age, cruel and impartial, adds its own problems
for adults, regardless of their health history. Recent statistics
show that nearly 50 percent of people aged 65 or older have some
type of physical, psychiatric, or cognitive disability. For adults
with cerebral palsy, as for the rest of the "normal" aging public,
it's only going to get worse. According to DiFazio, the number of
cerebral palsy patients who are surviving into adulthood is
increasing with improved medical careat least half a million adults
have cerebral palsy. "Because of the difficulty with their body's
mechanics, aging cerebral palsy patients develop earlier arthritis,
earlier pain," says Murray Goldstein, DO, MPH,
medical director for United Cerebral Palsy. "And, generally
speakingthey seem to age at a faster pace: the usual dysfunctions
associated with aging (gastrointestinal functions, bladder control,
bowel control) become an increasing problem for everyonebut for
many of those with cerebral palsy, it appears earlier in their
lives than we would expect."
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Janet Lord, MD Berkeley, CA |
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Janet Lord, MD, Berkeley,
California, notes that over the last 10 to15 years, people have
begun to question what happens to those with cerebral palsy once
they reach adulthood. Virtually all groups participating in a
Rancho Los Amigos study on adults with early onset disabilities
experienced a kind of premature deterioration of their
musculoskeletal functioning, reports Lord. "Spasticity doesn't
actually physically worsen, but they get tighter because we all get
tighter as we get older," Lord clarifies. Thus, persons who were
marginal walkers in adolescence may require a wheelchair or a
scooter at least part of the time as early as their 20s. People who
are good walkers often don't experience trouble until they are in
their 40s or even 50sstill younger than the general population.
"The problem that we are seeing is that the orthotic and rehab
community really doesn't know what to do about this. They may
attribute it to the cerebral palsy without recognizing that there
has been a functional decline. Sometimes that's correctable, and
sometimes it's not."
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Todd Stone, CPO, Teter O&P |
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Todd Stone, CPO, Teter Orthotics
& Prosthetics, has worked with cerebral palsy patients for
nearly 20 years, and although he treats a large population of
children and adolescents with cerebral palsy, he admits that the
adult patients tend to fall through the cracks.
Children are generally in a mainstream program in which they
receive structured care. They're continually being brought in for
replacement of devices due to growth. By age 14 to 20, Stone notes,
their growth slows and they don't need as many replacement devices.
Also, at that time, many of them make a major lifechoice: Are they
going to continue to try to be functionally ambulatory, or are they
going to get a power chair and get bracing for positioning
only?
If they choose to use a wheelchair, Stone shifts focus away from
the feet and concentrates on trying to find ways to keep their
hands in a functional position. If they choose to continue striving
to be functional, he says his task is then to keep them as
functional and independent as possible for as long as possible.
Despite the growing population of adults with cerebral palsy,
the number receiving any kind of regular orthotic care is
shockingly low. Stone offers an example: "For the last eight years,
I have seen at least 60 or 70 kids for braces per yearsometimes as
many as 100. The amount of adults I see on a normal basis is about
five or ten a year." Stone's colleagues report similar findings.
"Ideally, I try to watch them very closely when they start getting
to that age," says Stone. "I've treated many of these people since
they were little, and I always try to keep in contact with the
therapist or the family and do some sort of follow-up at least once
a year to determine if there is something we can do or something we
can prevent."
CP Management
Recently, great strides have been made in the treatment of
spasticity and lack of proper function over the last five years,
including the use of Botox® (botulinum toxin), baclofen, and
other therapies.
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Kimberly Anzelmo, a patient at Walter Reed Army Medical Center. |
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Bracing and splinting are also an important part
of patient treatment, believes DiFazio. "Although night splints for
children are controversial, the data seem to show that you can't
maintain range of motion just by doing some stretches once in a
whilethat you really need to maintain that muscle in a stretched
position. And when we do our interventions such as intrathecal
baclofen, Botox, or oral medications to relieve tone an important
adjunct is maintaining the muscle in a stretched position with
splinting." DiFazio recommends coupling splinting with exercise
when possible.
DiFazio identified specific devices that appear to offer
significant benefits. For instance, some braces, if used early, may
actually change the history of hip deterioration, he observes. The
SWASH brace has been shown at least preliminarily to change the
natural history of hip dislocation in spastic cerebral palsy, he
notes. Spastic adductors tend to push the femoral head
posteriorally and superiorly out of the acetabulum. The SWASH
braces appear to change that vector into a more normal direction,
lessening the degree of hip dislocation, says DiFazio. In
conjunction with Botox, it may actually change the growth of that
femoral head and perhaps make it less likely to dislocate in the
future, he adds.
DiFazio feels that while intervention in childhood is important,
it is equally important to take a long-term view and attempt to
preserve the integrity of hips and bones throughout the life of a
patient with cerebral palsy.
Stone cites success with Cascade's DAFO®, and has shifted
quite a bit of bracing to this type of dynamic AFO. The total
contact design helps reduce unwanted muscle tone and maintains the
feet in a somewhat better alignment, he explains.
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Easton Law, 20-year-old college student with spastic hemiplegia, with a goal of being a radio announcer. Walter Reed Army Medical Center. |
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Lord has a number of patients who come to her for
the first time in their 40s because they have gradually developed
contractures and foot deformities which impede their ability to
walk. For ankle contractures, Lord's recommendation is surgical.
However, people who develop hip and knee flexion contractures are
more difficult to resolve, she explains. Sometimes they can be
released surgically, sometimes not. Especially in people who are
still walking into adulthood, back pain is more common and more
difficult than in the general population. Cerebral palsy patients'
walking is affected because they have pain and are developing
increasing tightness around their hips and their knees so their
crouch gets worse. Although surgery sometimes can be useful to help
them loosen up again, the convalescence may be too difficult and
their walking too marginal before surgery. They just don't have
enough recovery power and choose to go into a wheelchair. However,
good bracing is useful, she adds, "if people can keep after
it."
Lord notes that she has had success with using Botox injections
coupled with a Dynasplint® for adults who develop
upper-extremity contractures. "It's harder to do that work with
Botox in the lower extremities because the muscle groups are so
large it's hard to really get enough Botox in there to be
meaningful."
Since the anti-spasmodic effects of Botox only last for about
three months after the injection, it allows the patient to stretch
during that time. It's a mechanism to facilitate a rehabilitation
programbut not a selfcontained treatment.
As the patient ages, Lord observes that in practical reality,
more equipment is needed. For instance, the patient starts to use a
walker, then a manual wheelchair, then, if able, an electric
wheelchair or scooter. He gradually becomes more
equipment-dependent. "Proactive bracing and activity is really the
way to keep them going as much as possible, and that requires
dedicated ongoing monitoring every two to three years."
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Mark Taylor, University of Michigan |
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The orthotist's focus, of course, is to prevent
deformity from developing, but often adult patients are already
dealing with multiple deformities, points out Mark K.
Taylor, MLS, CPO, University of Michigan. "We're trying to
prevent further progression and to keep them as comfortable as
possible, while still trying to figure out if there is anything
orthotically that we can do to make them more independent or more
stable."
He stresses the importance of spending as much time as necessary
to evaluate patients with severe abnormalities, and deciding what
will work, what can be corrected, and what must simply be
accommodated.
"Sometimes the contractures are such that no amount of orthotic
intervention is going to bring them back to normal without some
sort of surgical intervention," he admits. "The last thing you want
to do is throw all this new expensive technology at patients who
are not candidates for it."
Taylor advises, "In dealing with new cerebral palsy patients,
get acquainted with each patient and find out what their level of
disability is as far as their biomechanical challenges," he
advises. "Really understand their biomechanical needs and then try
to determine honestly if you have the skills, knowledge, and
technology to be able to provide something for them that would be
beneficial."
"The old saying is, regarding older patients with plantarflexion
contractures: 'If you can't get their heels to the ground, you get
the ground up to their heels!' You do that by utilizing wedges and
supports, among other things."
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Lateisha Green, 21-year-old with spastic hemiparesis. Walter Reed Army Medical Center. |
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Aging patients often wind up with knee-flexion
contractures and hip-flexion contractures, notes Taylor. "When you
have those three jointsthe ankle, knee and hip suspended, and as
you are getting weaker, it becomes very difficult to stay upright
with those three joints having tightness, and that tightness
progressing. Orthotically, the key is can we prevent that
progression; and can we do it in a tolerable manner, something that
patients will use?"
Stone reminds us that the one constant in a cerebral palsy
patient's life is the perpetual need to address contractures. After
five years of wearing a brace, the patient may return and complain
of a developing sore on his heel and ask that the brace be fixed.
However, what has happened is that the patient has lost that battle
and the contracture is worsening so that the brace no longer fits
appropriately.
Stone tries to help patients to stay ahead of the game as much
as possible, encouraging them to sleep with a brace at night. There
are many hand splints and braces, and some good night-time
splintsincluding sheepskin-lined devices that can be adjusted for
contractures.
On one hand, the prospect of sleeping with a boot on your foot
every night might seem pretty grimbut consider the alternatives:
repeated surgeries to relieve the contracture, or simply giving up
the battle and sacrificing ambulation for a wheelchair. One way or
another, something must be done to keep the muscle imbalance at
bay, Stone emphasizes.
Botox may help to delay the inevitable, but at some point,
almost all cerebral palsy patients are going to have to have
surgery, he believes. Weight gain can be a problem. Ambulation
becomes less functional for them, and they just decide to use a
wheelchair. "Sadly, that's a significant percentage of the cerebral
palsy population," says Stone. "Nevertheless, you're always trying
to do the DAFOs, get them in some sort of night splint, make sure
that they maintain follow-up with you, and at some point, make sure
they go back into therapy."
The bottom line? Just do the best you can, Stone advisesa maxim
that applies to both orthotist and patient.
Judith Philipps Otto is a freelance writer who has also
assisted with marketing and public relations for various O&P
industry clients. She has been a newspaper writer and editor and
has won national and international awards as a broadcast
writer-producer. 
Table Of Contents - September 2005
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