Rehabilitation of Patients With APD
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Rehabilitation of Patients With Atypical Parkinsonian
Disorders
Daniel K. White, Douglas I. Katz, Terry Ellis, Laura Buyan-Dent,
and Marie H. Saint-Hilaire
INTRODUCTION
Atypical parkinsonism encompasses several disorders that may have disease-specific or individualspecific characteristics, however common features include akinesia, rigidity, gait difficulties, and
cognitive decline with gradual worsening of the symptoms. These features result in a variety of deficits that affect the patient’s ability to function in their usual capacity at home, on the job, and within
their community. As in other neurodegenerative disorders, patients with atypical parkinsonian disorders (APDs) become increasingly disabled and have a decline in their quality of life. The rehabilitation team’s goal is to improve the patient’s functional ability and quality of life. Use of a disablement
model provides a conceptual framework helpful in delineating the level at which intervention is best
applied. The team must appreciate the impact of intervention at the pathology, impairment, functional, and disability levels in order to choose the appropriate treatment direction. The evidence supporting rehabilitation in idiopathic Parkinson’s disease (PD) can be useful in gaining an appreciation
of the impact of treatment across the different levels in order to help guide rehabilitation direction in
patient’s with APDs. Treatment direction may encompass both restorative and compensatory strategies to improve function and quality of life and should be considered to supplement pharmacologic
and other medical interventions.
A CONCEPTUAL FRAMEWORK
Rehabilitation teams often use a model of disablement to describe the relationship from disease to
disability and to clearly identify the effects of disease on an individual. A disablement model is
useful in providing a conceptual framework to help focus rehabilitation efforts in an appropriate
direction. A model is also helpful in establishing clear communication among the members of the
rehabilitation team. The Nagi Disablement model, developed by the sociologist, Saad Nagi, is one such
model often adopted by rehabilitation teams. It contains four levels of dysfunction, which include the
pathology, impairment, functional limitation, and disability (1). APDs are examples of pathologies,
which encompass the disease state at the organ level. Impairments refer to the anatomical, physiological, mental, or emotional abnormalities or losses related to structure or function. It is helpful to
distinguish between direct and indirect impairments. Direct impairments are those that arise as a
direct result of the pathology. In APDs, direct impairments may include rigidity, bradykinesia, and
tremor. Indirect impairments may arise from the direct impairments or from adopting a more sedenFrom: Current Clinical Neurology: Atypical Parkinsonian Disorders
Edited by: I. Litvan © Humana Press Inc., Totowa, NJ
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Fig 1. Disability model with direct and indirect impairment.
tary lifestyle over time. For example, in APDs, the presence of axial rigidity often leads to indirect
impairments such as loss of range of motion into spinal rotation and extension. Indirect impairments
such as poor endurance may evolve because of a decline in activity level as the disease progresses.
Functional limitations include limitations in performance at the level of the whole person such as
walking, moving in bed, rising from a chair, and handwriting. Disability refers to limitations in performance of socially defined roles and tasks including work, travel, and other leisure or recreational
activities. (See Fig. 1.)
The role of the rehabilitation team is to choose and administer the appropriate therapeutic interventions with the goal of maximizing function and minimizing disability ultimately leading to improving quality of life. In order to choose the most appropriate interventions, the level of impact must be
defined. The neurologist typically intervenes with pharmacological intervention aimed at the pathology
level. A myriad of medications to optimize availability of dopamine or to replace dopamine are administered with the goal of reducing severity of impairments such as rigidity, which may lead to improvements in mobility at the functional level. However, in patients with APDs, medication
effectiveness is less than optimal and often leads to only modest changes at the impairment and
functional levels. Given the limited effect of pharmacological intervention, rehabilitation may play
an even more important role in maximizing function in patients with APDs than idiopathic PD.
EFFICACY OF REHABILITATION
The efficacy of rehabilitation in patients with APDs is largely unknown, however a number of
studies have investigated the efficacy of physical therapy in addition to medication therapy in individuals with PD. Most studies reveal positive effects of physical therapy in patients with PD. De Goede
and colleagues conducted a meta-analysis of 12 studies investigating the effects of physical therapy in
addition to medications in individuals with PD (2). All studies included in the analysis were classi-
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fied as true or quasi-experiments. The physical therapy interventions varied across studies and
included gait training with external cues, behavioral training to improve activities of daily living
(ADL), exercises to improve mobility, stretching, strengthening, karate, skills training, and education. A statistically significant summary effect size was found with regard to ADL (0.40), stride
length (0.46), and walking speed (0.49). The summary effect size with regard to neurological signs
(0.22) was not significant. The authors concluded that individuals with PD benefit from physical
therapy (PT) added to their standard medication. Murphy and Tickle-Degnen conducted a metaanalysis of 16 studies investigating the effects of occupational therapy (OT)-related treatments for
individuals with PD (3). Studies included contained a variety of experimental designs including randomized controlled trials (RCTs), cohort, pretest–posttest, and case-control studies. A statistically
significant summary effect size was found for outcomes classified at the capabilities and abilities level
(0.50), the activities and tasks level (0.54), and on overall outcomes (0.54). The results of this metaanalysis suggest small to moderate positive effects of OT-related interventions in individuals with
PD. Deane and coauthors concluded in two systematic reviews that there was not enough evidence to
reject or to support the efficacy of PT for patients with PD, however a meta-analytic review was not
conducted (4,5).
A randomized control trial (RCT) (n = 68) investigating the efficacy of PT in patients with PD
revealed significant improvements at the disability level regarding quality of life as it relates to physical mobility. The most robust findings occurred at the functional level with respect to walking speed
and ADL (6). No significant improvements were found at the impairment level with regard to neurological signs. Several other investigations support these findings. Formisano et al. investigated the
benefits of a PT program in comparison to a control group and found greater improvements regarding
ADL and a 10-m walking test in the group who had received PT (7). Patti and coauthors investigated
the effects of a multidisciplinary rehabilitation program in an RCT on individuals with idiopathic PD
and found significant increases in walking speed and stride length compared to a nonintervention
control condition (8). In a nonrandomized study, Szekely and coauthors reported significant
improvements in step length and walking speed for a small group of individuals with PD who participated in a group exercise program (9). Scandalis and colleagues reported significant gains in strength,
stride length, and walking velocity compared to pretreatment values in 14 individuals with PD who
participated an 8-wk course of resistance training (10). Muller et al. randomly assigned 29 patients
with PD to either a control group receiving nonspecific psychological treatment or a behavioral treatment group focusing on strategies to improve initiation and coordination of walking and ADL. The
behavior treatment group showed faster onset of gait initiation and improvements in the Unified PD
Rating Scale (UPDRS) ADL section compared to the control group (11). Thaut et al. investigated the
use of rhythmic auditory stimulation (RAS) as a pacemaker in a 3-wk home-based gait-training program for individuals with PD. In comparison to a control group, the patients who trained with RAS
significantly improved gait velocity by 25% and stride length by 12% (12). These studies all provide
evidence supporting the functional gains that occur following PT intervention in the PD population.
These interventions were focused at the functional level targeting walking, balance, and transitional
movements supporting the importance of task-specific training at the functional level.
The impact of rehabilitation on direct impairments stemming from PD appears minimal. The metaanalysis by deGoede and colleagues and the RCT by Ellis and coauthors revealed no significant
changes in neurological signs (2,6). However, in a randomized crossover study, Comella et al. found
significant improvements in the UPDRS motor scores following participation in a rehabilitation program, suggesting a potential impact on neurological signs (13). The impact of rehabilitation on indirect impairments appears stronger. In an RCT, Schenkman and colleagues demonstrated improved
axial mobility and flexibility in individuals with PD who participated in a 10-wk exercise program
(14). Scandalis and coauthors reported strength gains after participation in a resisted strengthening
program in individuals with PD (10). Bridgewater and coauthors reported gains in cardiorespiratory
fitness and habitual activity levels following participation in a 12-wk aerobic-exercise program (15).
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DIRECTING REHABILITATION APPROACHES
Therapists may choose from a variety of treatment approaches and strategy. These include treatments that target problems at the impairment or functional level, and interventions that aim to restore
to a previous level of functioning or compensate for loss of previous healthy functioning. Although
the literature on rehabilitation with patients with PD is not yet adequate to establish comprehensive
evidenced-based guidelines, the growing body of evidence supports the efficacy of rehabilitation and
suggests approaches that rehabilitation teams may use in patients with idiopathic PD and APDs.
Consistent themes that arise from the research in idiopathic PD include improvements in walking
ability and ADL status following rehabilitation targeting these functional areas. Task-specific training at the functional level appears to be a critical ingredient. Studies of other neurologic disorders
support the notion that performance of tasks improves in relation to direct task practice (16,17).
Furthermore, Lin and colleagues suggest the adult neurological population is more likely to put
effort into purposeful everyday tasks, as opposed to tasks perceived as nonpurposeful or less meaningful (18).
The lack of effect of rehabilitation at the impairment level in patients with PD suggests that rehabilitation programs aimed at reducing rigidity, tremor, and other PD impairments are less likely to
lead to changes in functional status. However, indirect impairments such as flexibility, range of motion, strength and cardiorespiratory status may benefit. Interventions targeting these indirect impairments yield improvements in function and quality of life.
The choice of restorative vs compensatory strategies can vary among individuals, for different
treatment goals and at different times in the progression of the disease. The success of restorative
approaches is in part linked to improvement at the indirect impairment level. For example, as axial
mobility of the spine improves with treatment aimed at increasing range of motion, the patient’s
ability to get out of bed in a way that resembles premorbid performance of the task also improves. If
underlying impairments do not improve significantly enough to allow successful use of previous movement patterns in the functional task, a compensatory approach may be required to improve function.
For example, if axial mobility remains limited, a new strategy relying less on spinal mobility may be
introduced to compensate for a loss of mobility. In this case, successful completion of the task can
still occur by adopting this new strategy. In idiopathic PD, a combination of restorative and compensatory strategies is often implemented to improve function and quality of life. In early PD, when
medications are most effective in treating direct impairments and indirect impairments are most amenable to change with rehabilitation, a restorative approach is often successful. As the disease progresses,
fewer changes at the impairment level are expected and a greater emphasis on compensatory strategies to improve function should be adopted. In APDs, the impact of intervention on impairments is
usually less than that expected in idiopathic PD. The effect of medication on the reduction in direct
impairments, such as rigidity, and indirect impairments, such as spinal mobility, are often less than
what is expected in idiopathic PD. In order to improve function in those with APDs, a compensatory
approach at the functional level is usually necessary. For example, if a patient with an APD is having
difficulty rising from a chair, adopting a strategy using momentum or counting may improve ability
to perform the task. In addition, changing the environmental conditions such as raising the height of
the chair or using a chair with arm rests is often a successful compensatory strategy.
In summary, indirect impairments have the potential to be modified but greater changes would be
expected to occur in the idiopathic PD population compared to the APD population. Frequent reassessment to evaluate the degree of change is necessary to help steer or adjust treatment direction.
Several studies support the effectiveness of task specific practice at the functional level to yield
improvements in functional status in patients with PD. A restorative approach may be successful
when underlying impairments are amenable to improvement; otherwise compensatory approaches in
strategy and environmental constraints may yield the greatest changes in functional status and quality
of life.
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OVERVIEW OF A MOVEMENT DISORDERS REHABILITATION PROGRAM
Our institution has developed a specialized inpatient movement disorders program that focuses on
patients with atypical and idiopathic PD and their unique cognitive, motor, and medication-related
issues. The program consists of a team of neurologists, nurses, physical, occupational, and speech
therapists specializing in movement disorders. Upon admission, the initial goals of the team are to
record a patient’s movement performance and cognitive function throughout the day. This information is used to identify particular problems specific to that individual, and establish a working diagnosis of the movement disorder to guide treatment decisions. The next goal is to make appropriate
medication adjustments to minimize impairments and optimize functional mobility throughout the
day. During this process patients participate in individual- and group-therapy sessions where team
members treat and monitor movement and cognitive behavior.
Physical and occupational therapists evaluate patient’s functional status daily with a battery of
short timed tests. Impairment-level assessments are made twice weekly by neurologists examining
tremor, bradykinesia, rigidity, and other impairment-level elements of the UPDRS. Once data are
collected and evaluations are complete, patient cases are discussed at weekly movement disorders
rounds attended by the patient’s therapy team and the movement disorders team. A brief summary of
any medication side effects or fluctuations of motor or cognitive status is presented to the movement
disorders neurologists, who then direct appropriate medication adjustments. The patient’s motor and
cognitive function continues to be tracked and presented at the next round to determine the effectiveness of any medication changes.
A neurologist specializing in movement disorders can play a key role on a rehabilitative team by
assisting in the identification and potential treatment of atypical syndromes. Movement disorder specialists serve as a resource for new developments, diagnostic criteria, and novel treatments. The input
of the specialist can be particularly valuable since the diagnosis of APD is not straightforward. Frequently, the response or lack of response to dopaminergic medications is key to the diagnosis. The
coordinated efforts of the movement disorders specialist and the rehabilitation team provides a unique
and desirable setting to diagnose APDs and the response to medication.
Rehabilitation team members are able to spend a significant amount of time evaluating and interacting with patients, and if knowledgeable regarding extrapyramidal disorders, can detect subtleties
that may not be available to a neurologist evaluating a patient in the usual clinical setting. For example,
in the typical outpatient office visit, determining the response to medication throughout the day is
largely done by anecdotal information provided by the patient and family. In a medically supervised
setting such as a rehabilitation center, the potential exists for close observation and documentation by
staff specially trained and guided by movement disorders specialists to determine more precisely
what is actually occurring in a patient over time. Acquisition of this kind of information can greatly
improve diagnosis and treatment, which is often a formidable challenge in patients with atypical PD.
Monitoring of Side Effects and Timing of Medication
In addition to carrying out daily motor and cognitive assessments, therapists and nursing staff are
knowledgeable of the indications and potential side effects of the dopaminergic medications used in
the treatment of extrapyramidal movement disorders. Issues regarding administration of these medications with respect to meals and activities are emphasized. The nursing staff is focused on keeping
to dosage schedules, often challenging in patients with frequent dosing of multiple medications. The
staff recognizes the importance of accurate documentation of actual times medications are received
so there is reliable information to guide further medication adjustments.
The rehabilitation team monitors medication effects and side effects. Educational inservices are
given to assure correct identification of parkinsonian signs and side effects including tremor, freezing, wearing-off phenomena, dyskinesias, hallucinations, and orthostasis. Clinical responses are documented and tracked in relation to medication dosing. These observations are key for medication
adjustment decisions.
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Cognitive Performance Measures
The primary measure used to track cognitive performance is the Mini Mental Status Exam (MMSE)
(19). The MMSE is an 11-item test examining five areas of cognitive function including orientation,
registration, attention, calculation, language, and recall. This is performed at least once during admission to obtain baseline information or may be used for comparison in future admissions. Scores may be
used to monitor cognitive decline after medication changes. If cognitive difficulty is a significant
problem, neuropsychology may provide further assessment. Behavioral problems are managed using
the combined expertise of the rehabilitation team, with input from psychology, neuropsychology,
and neurology.
Motor Performance Measures
The therapy staff records motor performance measures to objectively track a patient’s response to
a medication regimen. When selecting a test, therapists attend to the particular areas of functional
mobility that fluctuate throughout the day and choose a physical measure that incorporates this particular motor task, such as turning, ambulating, or transitioning from sitting to standing. The motor
test should be administered around the patient’s medication schedule accounting for peak (“on”) and
trough (“off”) times. Subsequent retests should be carried out at similar times to help distinguish
random fluctuations in motor behavior from those related to medication dosing. Again, strict timing
of administration of medications is emphasized to ensure motor performance can be related to a
possible medication effect.
Physical-performance measures that have been found to be valid and reliable in idiopathic PD
population include the 2-min walk, the timed up and go (TUG), and the timed supine to stand and
stand to supine (20,21). The results of these tests is documented in the chart for team members to
track changes over time and in relation to medication interventions.
The 2-Min Walk
The 2-min walk involves measuring the distance a patient can ambulate at a comfortable pace in
2 min. The test should be carried on a flat level surface with two cones or markers delineating the
repeated walking path. The distance between the markers should be kept consistent between tests to
improve reliability. The patient can use an assistive device during the test if necessary. This test has
been shown to identify the loss of walking endurance in those with idiopathic PD compared to healthy
controls (20). The 2-min walk is more appropriate than a 6- or 12-min walk test in patients with
APDs. The test requires two practice walks followed by one recorded walk to control for learning
effects. An example of how to administer this test is included on the CD-ROM.
The Timed Up and Go
The TUG is a simple test that can be quickly administered. The TUG records the time it takes to
stand up from a chair with armrests, walk 3 m, turn, return to the chair, and sit down. The patient can
use an assistive device such as a walker or cane during the test. The TUG has been shown to have
excellent interrater reliability (ICC = 0.99) and intrarater reliability (ICC = 0.99) (22). The test also
has been found to correlate moderately with gait speed, balance, and functional capacity (22). The
TUG has been shown to be responsive to changes in motor performance in individuals with idiopathic PD. The test is performed twice with a practice first trial and a recorded second trial. An
example of how to administer this test is included on the CD-ROM.
The Timed Supine to Stand and Stand to Supine
This test records the amount of time it takes for a patient to transfer from a supine to standing
position and separately records time to transfer from standing to supine. The timed supine to stand and
stand to supine test has been found to be a stable measure with good test–retest reliability (ICC = 0.77
for supine to stand, and 0.80 for stand to supine) (21). As with the TUG, this test incorporates functional
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elements that patients with APDs usually have difficulty with. In the clinic, the test can be modified
to a sitting position instead of a standing position for those patients unable to stand unassisted, however the patient must be able to transfer unassisted. Patients perform one practice trial and the average of two subsequent test trials yields the time that is recorded. An example of how to administer
this test is included on the CD-ROM.
Intervention Approaches
Both restorative and compensatory approaches are implemented in the inpatient movement disorders program at our institution. Whereas most patients demonstrate some potential for change of
indirect impairments, the majority respond best to interventions aimed at functional-level tasks. Sometimes both strategies are combined through the collaborative efforts of physical or occupational
therapy.
For example, axial rigidity, a common direct impairment, results in the indirect impairment of
limited range of motion in spinal rotation and extension. To address these indirect impairments, a
physical therapist can have patients pass a therapy ball laterally from side to side in a seated or
standing position. Patients can achieve more axial extension through increasing the height at which
the therapy ball is passed. Increased axial rotation can be achieved through seating the patients more
perpendicular to one another.
Both of these indirect impairments can be further treated within a functional context using meaningful tasks, such as meal preparation, upper- or lower-body dressing, or grooming. PT and OT can
employ these activities in constructing tasks to address loss of axial range of motion (ROM). For
instance, placing canned goods in overhead cabinets during meal preparation activities improves
spinal ROM. Patients can reach for food items positioned laterally to facilitate spinal rotation and
place the items in an overhead cabinet facilitate spinal extension. For most patients, compensatory
techniques will be appropriate to accomplish this task in the home environment, and can be introduced through educating patients to place items on lower shelves to compensate for limited axial
extension. Patients can then actively practice utilizing this compensatory strategy in the functional
kitchen environment.
A video illustrating an example of one approach aimed at the indirect impairment level followed
by the functional level can be found on the CD-ROM.
CASE STUDY
The following case study illustrates some of the essential components of our movement disorders
program at our institution for a patient with an APD.
MG is an 89-yr-old male who reported progressive worsening of gait and increased frequency of
falls. He was started on L-dopa/carbidopa several months prior to admission by his primary neurologist, who suspected the patient had idiopathic PD. It was not clear that medication produced an
improvement in function. His past medical history was significant for hypertension, coronary artery
disease, chronic anemia, and a coronary artery bypass graft. Upon admission MG had no frank
rigidity, but mild cogwheeling (left greater than right), and a mild to moderate symmetric bilateral
action tremor. Functionally, the patient was able to walk with a minimal amount of assistance for
distances of 100 ft with a rolling walker. His gait was characterized by an overall slow cadence,
short step length, and a decreased base of support. On admission the patient was receiving one and
a half tabs of L-dopa/carbidopa 25/100 three times a day. Given the patient’s questionable response
to L-dopa/carbidopa and his cardiovascular risk factors, the initial working diagnosis of the movement disorders team was APD.
Since MG was able to ambulate with a minimal amount of assistance, the patient was appropriate
for functional testing using the TUG and 2-min walk. The supine to stand test was not appropriate
since MG required assistance with bed mobility upon admission. After baseline measures were col-
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Fig. 2. Case study: timed up and go.
Fig. 3. Case study: 2-min walk.
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lected, L-dopa/carbidopa was tapered and discontinued because of the lack of evidence that it provided clear benefit. To ensure the patient had no negative effects from the medication taper, functional measures were collected after each medication change. Figures 2 and 3 describe performance
on functional measures regarding medication changes.
At discharge the patient’s functional measures were improved, about 10 s faster with the TUG and
26 ft farther with the 2-min walk from initial measures. The improvement in functional measures
despite tapering L-dopa/carbidopa suggested that the improvement was the result of rehabilitation
interventions. At discharge, the patient returned to assistive living.
This case illustrates several important contributions a movement disorders rehabilitation team can
provide patients with atypical PD. Aside from the benefits of rehabilitation interventions, the team
provided systematic objective measures of function to accurately conclude that MG did not benefit
from pharmacological intervention.
CONCLUSION
Patients with atypical PD present numerous unique challenges to the health care team and their
families. Rehabilitation can play an important role in improving function and quality of life especially for treatment of this patient population since current medical and surgical therapies are limited
for treating this patient population. Although the efficacy of rehabilitation in patients with APD has
not been adequately studied, themes emerge from the rehabilitation literature in idiopathic PD, which
may be helpful in the treatment of individuals with APD. Rehabilitation may focus at an impairment
or functional level and may employ restorative or compensatory strategies. Research evidence is
strongest for rehabilitative treatment at a functional level but some combination of strategies, employing a variety of activities and the combined efforts of multiple disciplines may be most effective.
Rehabilitation efforts need to be closely coordinated with medication adjustments. A multidisciplinary
team with expertise in the treatment of patient with movement disorders can facilitate such a coordinated effort using standardized protocols to track progress, response to medication, and side effects.
FUTURE RESEARCH DIRECTIONS FOR REHABILITATION
OF PATIENTS WITH APDS
• Additional randomized control trials are needed to determine the efficacy of rehabilitation
across the short and long term.
• An investigation of the relationship between functional gains and the impact on quality of life
is needed.
• The relationship between impairment-level gains and change in function needs to be examined.
• The critical aspects of treatment that lead to improved function and quality of life need to be
identified.
• Guidelines are needed to categorize which patients are “responders” or “non-responders” to
rehabilitation and which patients benefit from a compensatory vs a restorative approach.
VIDEO LEGENDS
Functional Tests
• Timed Up and Go
Demonstration of the Timed up and Go with a patient with PD.
• 2-Min Walk
Demonstration of the 2-Min walk test with a patient with PD.
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•
Timed Supine to Stand and Stand to Supine
Demonstration of the Timed Supine to Stand and Stand to Supine with a patient with PD.
MD Program Treatment
• Movement Disorders Program Axial Rotation
Demonstration of intervention directed at the indirect impairment level for two patients with PD.
• Movement Disorders Program Kitchen Activity
The first section is of a higher-level patient performing a kitchen activity to improve axial
rotation and extension. The second section is of a lower-level patient performing the same task,
but modified for his level of function.
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