NeuroRehabilitation 22 (2007) 451–461 451

IOS Press

The role of physical therapy and occupational

therapy in the treatment of Amyotrophic
Lateral Sclerosis
Michele Lewis∗ and Scott Rushanan
Department of Physical Medicine and Rehabilitation, University of Pennsylvania Health System, Pennsylvania
Hospital, Philadelphia, PA, USA

Abstract. Amyotrophic Lateral Sclerosis (ALS) is a progressive neuromuscular disease for which there is no cure. There is a
general misunderstanding among healthcare professionals of the proper use and potential benefits of physical and occupational
therapy to treat the symptoms and resulting loss of independence. These services can help maximize mobility and comfort
through equipment prescription, activity adaptation, patient and family education, and the use of appropriate exercise and range
of motion techniques. The literature is controversial on the prescription of exercise in this population. Individual muscle strength,
fatigue and spasticity must all be taken into account when discussing exercise with persons with ALS. It can be concluded that
physical and occupational therapy intervention is beneficial to persons with ALS. However, more research is needed to decisively
determine the effects of exercise on the person with ALS.

1. Introduction goals and benefits of PT and OT. A 1999 study showed

Amyotrophic Lateral Sclerosis (ALS) is a disease
that primarily affects the motor neurons of the cerebral
cortex, brain stem, and spinal cord. It causes weakness,
atrophy, and spasticity of the bulbar, cervical, thoracic,
lumbar, upper extremity and lower extremity muscles.
The disease is of unknown etiology and there is no cure.
The mean life expectancy from onset to death or ven-
tilator dependency ranges from two to four years [21].
Quality of life is the primary goal of all health care
professionals involved with treating patients with ALS.
Due to the short life expectancy after diagnosis and
the inability to strengthen already weak musculature in
ALS, many doctors do not recognize that physical ther-
apy (PT) and occupational therapy (OT) can improve
a patient’s quality of life. There seems to be a lack of
education throughout the healthcare community on the
that zero percent of ALS patients in Italy and 27% of
patients in Spain received PT [16]. A similar study
showed that only 30% of ALS patients in Brazil and
Argentina received PT [19]. However, other studies
have shown that physical and occupational therapy can
be beneficial to the ALS population [2,5,6].
This article focuses on treatment strategies and prin-
ciples to guide therapists and other healthcare profes-
sionals in the treatment of persons with ALS. There are
few articles dedicated solely to PT and OT interven-
tion for the person with ALS, so this article contains
both a thorough review of the existing literature and
experience-based commentary. Areas covered include
equipment prescription, patient and family education,
activity adaptation, and the use of appropriate exercise
and range of motion techniques.

2. Primary goals of PT and OT

∗ Address for correspondence: Michele Lewis, MPT, Physical
Therapy Department, Pennsylvania Hospital, 800 Spruce Street,
Philadelphia, PA 19107, USA. Tel.: +1 215 829 3258; Fax: +1 215 The main goal of PT and OT is to maintain inde-
829 3375; E-mail: michele. lewis@uphs.upenn.edu. pendence with functional mobility and activities of dai-

ISSN 1053-8135/07/$17.00  2007 – IOS Press and the authors. All rights reserved
452 M. Lewis and S. Rushanan / The role of physical and occupational therapy in ALS treatment
ly living (ADLs). Secondary goals include assessing
needs for equipment and modifications, educating pa-
tient and family, prescribing appropriate exercise, pre-
venting complications of immobility, and eliminating
or preventing pain. Achieving these goals through
adaptive techniques and equipment can improve quality
of life.
2.1. Assistive devices
The use of assistive devices is a common interven-
tion used to meet the goal of maintaining independence.
Physical therapy should be involved in prescribing am-
bulatory aides. The therapist is able to individually
address each patient’s needs based on their upper and
lower extremity strength, amount of spasticity, gait pat-
tern, and energy requirements. A 1996 study showed
that the use of an assistive device required more energy
than not using one in persons with respiratory compro-
mise. The same study reported that a standard walker
required significantly more energy to advance than a
walker with wheels [20]. This is why a rolling walk-
er should be used instead of a standard walker in the
ALS population. Similarly, a rolling walker or single
point cane is more energy efficient than crutches or a
quad cane. It is important to take into consideration
hand strength if prescribing a rollator walker because
brake application can be difficult or impossible with
this population.
Occupational therapists are important in prescrib-
ing appropriate equipment to maintain independence
with ADLs. Assistive equipment commonly recom-
mended for dressing includes reachers, dressing sticks,
long handled shoe horns, long handled sponges, but-
ton hooks, shower seats, and three-in-one commodes.
These items have been shown to be effective in mini-
mizing energy output and improving function with self
care and ADLs in patients with functional deficits from
orthopedic and neuromuscular diseases [10,32,39,48].
Similarly, equipment recommendations for self feed-
ing, such as universal cuffs, larger diameter utensils,
plate guards, nose cups, and light weight drinking cups
have been shown to be effective in maintaining inde-
pendence and reducing energy expenditure [25,46].
Most tools we use throughout the day, such as uten-
sils, have a small grip diameter. Therefore, persons
with limited hand use will have difficulty using many
standard tools. Increasing the diameter of handles on
writing instruments, grooming tools, feeding utensils,
and other daily tools will improve grip function. A 1997
study showed that adapting an object’s characteristics,
such as handle size, can improve motor performance in
persons with limited hand use [22]. The recommended
diameter for functional grip is 33 mm [49].
There is almost an infinite amount of adaptive equip-
ment that may be useful to maintain independence for
persons with ALS. However, for some patients, weak-
ness, spasticity, or energy requirements become too
much to overcome with this equipment. At this point,
the patient will need help from another person.
2.2. Transfer aides
When assistance becomes necessary, there are de-
vices to help the caregiver transfer the patient safely and
efficiently. A gait belt allows the caregiver to provide
lifting assistance to the patient without putting harm-
ful stress on weak shoulder muscles. The placement
of the belt at the patient’s waist provides optimal hand
positioning for guarding.
A pivot disc can be useful for stand pivot transfers
if the patient loses their ability to step and turn. The
pivot disc consists of two circular discs on top of one
another. The patient sits with their feet on top of the
disc. When the patient stands, the caregiver is able to
turn the patient with the top disc,while the bottom disc
stays stationary.
If the patient has normal upper extremity and trunk
strength but lacks lower extremity strength, a sliding
board or beasy board may be appropriate. These de-
vices have limited potential due to the large energy
requirement. Because these devices require multiple
weight shifts, their use may be too fatiguing for the pa-
tient with ALS. The caregiver may then have to perform
a dependent transfer or consider using a mechanical
lift.
Mechanical lifts are a safe method to transfer a pa-
tient when he or she is dependent. These lifts have been
shown to decrease biomechanical stress and perceived
stress by nursing assistants [62,63]. A U-shaped sling
with head support or butterfly sling are recommended
because they can be donned and doffed while the pa-
tient is seated in a wheelchair. Another advantage of
this type of sling is it can be used over a toilet. Patients
and caregivers are often reluctant to accept such a large
piece of equipment into their home. Caregiver train-
ing is very important with this device so it can be used
safely and effectively.
 M. Lewis and S. Rushanan / The role of physical and occupational therapy in ALS treatment
2.3. Splinting and bracing
Splinting and bracing is often prescribed by physi-
cal and occupational therapy in this population. Dis-
tal upper and lower extremity weakness is common in
persons with ALS [3,7]. Weak ankle dorsifexion can
lead to tripping and falls. A light-weight (carbon fiber)
ankle foot orthotic (AFO) is recommended to brace the
ankle and help control falls [21]. Though theoretically
useful, heavier hinged AFOs may cause significant fa-
tigue of hip and knee musculature and increase energy
expenditure while ambulating.
Weak wrist extension can affect a patient’s ability to
reach for, grip and properly use common daily tools
such as utensils and grooming aids. A wrist cock-
up splint that positions the wrist at approximately 30
degrees of extension can improve function, reach and
grasp for patients with weak wrist extension [21,46].
Resting hand splints can be prescribed to prevent
contractures in patients with weak and spastic hands
and wrists. Static volar wrist splints worn for two to
three hours a day, along with a stretching program,
has been shown to be effective in maintaining muscle
length and preventing contracture of the hand [45].
Weakness of the muscles that support the gleno-
humeral joint is common in the ALS population. This
can lead to shoulder subluxation which is when the head
of the humerus drops lower in the glenoid fossa. Oc-
cupational or physical therapists can provide shoulder
slings to help alleviate discomfort and protect the joint
from further injury [46]. It has been shown that a Giv-
Mohr shoulder sling is most effective in repositioning
the shoulder joint and correcting shoulder subluxation
when compared with other types of arm slings [17].
The GiveMohr sling is also recommended because it is
easier to don, doff, and adjust. Most ALS patients will
need assistance to don or doff a sling. Arm trays or
troughs on wheelchairs have also been shown to pro-
vide support to the shoulder joint and correct vertical
subluxation [9].
2.4. Neck support
Weakness of the cervical spine extensor muscles can
make it difficult for persons with ALS to hold their
heads up to interact with others, use assistive devices or
technology, read, and watch TV. The PT or OT should
recommend a cervical collar in these cases as it can be
a useful tool in functional cervical spine positioning.
As will be discussed later in this article, once muscles
have become weak with ALS, nothing can be done to
453
strengthen them. For this reason, there is no concern
that wearing a collar will prevent cervical spine muscles
from getting stronger with use. As for the type of col-
lar, soft collars are reasonably comfortable but do not
provide adequate support to the neck in most cases. A
semi-rigid collar provides more support but can be un-
comfortable and increase anxiety about breathing [25].
A headmaster collar is usually the best option. It has
been shown to be effective because of its light-weight
and open style [28].
2.5. Wheelchairs
An important piece of equipment for persons with
ALS is a wheelchair. There are three basic models to
consider – companion, manual, and power. Even if a
patient is fully ambulatory, a wheelchair can be bene-
ficial for energy conservation [21,25]. The first chair
usually recommended for ALS patients is a compan-
ion wheelchair. This is a lightweight chair (about 20
pounds) with small wheels that cannot be propelled by
the patient. This chair is designed for easy transport
and for use by a caregiver. The drawback to this model
is that it can be bumpy over rough surfaces. This can
be overcome by placing additional cushioning in the
seat of the chair when it is in use. Rarely will a manual
wheelchair be recommended for this population as its
energy requirements are high and many persons with
ALS do not have the upper extremity strength to propel
the chair. Likewise, a scooter is of limited benefit to this
population as almost all patients will eventually need
more features than can be adapted to a scooter [54].
As insurance usually only pays for one wheelchair,
it is recommended that this benefit be used on a power
wheelchair. This type of chair is the most expensive
and can include features such as tilt-in-space, elevating
leg rests, various seating options and other supports.
These features can improve positioning and decrease
the risk of skin breakdown, dependent edema, blood
clots, and aspiration [21]. A Baylor University study
showed that motorized wheelchair users were signif-
icantly more satisfied with their level of activity than
manual wheelchair users. This study also showed that
the use of a wheelchair let patients interact more with
their community. Sixty-two percent reported that the
use of a wheelchair let them maintain their prior activity
level [56].
Persons with ALS are able to maintain their indepen-
dence in the power wheelchair because he or she can
usually propel it without assistance using head array,
joy stick or goalpost controls. If the patient becomes
454 M. Lewis and S. Rushanan / The role of physical and occupational therapy in ALS treatment
unable to operate the power wheelchair independently,
companion controls can be added.
Because there are so many features available on a
power wheelchair, a customized power wheelchair as-
sessment is recommended. At a wheelchair clinic, an
evaluator familiar with the ALS disease process can
ensure that the chair ordered for the patient is the best
model for them. The evaluator should also consid-
er the accessibility of the home and make appropriate
accommodations on the chair.
As power wheelchairs are heavier and larger than
other types of wheelchairs, they can be harder to trans-
port from place to place and maneuver in tight spaces.
The type of scooter or power wheelchair that can be
taken apart does not usually have enough features to
adequately support or properly position a person with
ALS. In addition, lifting the separate parts can be very
difficult for someone who has a disability. The best op-
tions for transporting a wheelchair are adapting an ex-
isting vehicle with an outside lift or using a specialized
van.
2.6. Home modifications
Ramping can be an option to make the home more
wheelchair accessible. However, many homes do not
have the space necessary to accommodate the one foot
of length that is necessary for every inch of rise. An-
other drawback of ramping, as well as outside lifts or
elevators, is the cost. Sometimes it may be necessary to
widen doorways or move to a first floor set-up. When
the expense or feasibility of home modification is un-
realistic, moving to a more accessible structure may be
the best option.
The physical or occupational therapist has a large
role in helping a patient decide what modifications are
necessary to maximize his or her independence with
ADLs and mobility. Examples of changes that may be
recommended, besides the ones listed above, are a roll
in shower and a stair glide. When home modifications
are made, the regulations set forth in the Americans
with Disabilities Act should be followed.
2.7. In the community
Driving an automobile is a daily activity for most
healthy adults. This activity can represent freedom and
independence. The importance of being able to perform
this activity is not usually realized until it can no longer
be performed safely. In the person with ALS, muscle
weakness, spasticity, and decreased reaction time can
affect the ability to perform all activities needed to
safely operate an automobile. The OT and PT can make
recommendations for driving adaptations. However,
because ALS is a progressive disease there is no way
to tell how long the adaptations will continue to work
for the patient.
Due to the expense of adaptations and the progres-
sion of the disease, driving is an activity that may have
to be discontinued. Having a caregiver drive may be
an option. Another option to investigate is transporta-
tion services provided in the community. For example,
some states have vocational rehab programs that take
people to and from work if they are unable to drive
themselves. Local ALS chapters or county govern-
ments may also offer van service to transport patients.
The PT and OT can offer information on available com-
munity services.
Those who lack social supports or financial resources
can be helped by various organizations such as the
ALS Association or the Muscular Dystrophy Associ-
ation. Multi-disciplinary clinics sponsored by these
organizations provide the optimal care for the person
with ALS [46]. At these clinics, patients have access
to healthcare professionals who specialize in the treat-
ment of persons with ALS. Staff at these clinics can
help the person with ALS find resources to assist them.
Equipment such as shower chairs and companion wheel
chairs can be provided to the patient who is unable to
obtain these items on their own. The clinic staff can
also make the patient aware of services that may be
provided by the county, the state, the Veterans Admin-
istration, and other programs that assist persons with
disabilities.
2.8. Progressive deficits: Patient and caregiver
education
As ALS progresses, loss of function is inevitable.
The patient with ALS will have to rely on caregivers to
have his or her needs met. Caregivers of patients with
ALS have been shown to face decreased psychological
and physical health [58]. A study by Krivickas et al
showed that home care received by patients with ALS
is often inadequate and too late to relieve the heavy load
placed on family caregivers [34]. In addition, there is
often a lack of knowledge of ALS on the part of the
home health staff [40]. Educating family and caregivers
on proper transfer, dressing, and toileting techniques is
an important role for physical and occupational thera-
pists. This can ease the burden placed on caregivers and
increase their knowledge base. Proper lifting and body
 M. Lewis and S. Rushanan / The role of physical and occupational therapy in ALS treatment
mechanic techniques are vital for patient and caregiver
safety. Hoyer lift training may become necessary as
transfers become more difficult and energy depleting
both for patient and caregiver. According to a study
by Aisen et al. an inpatient rehab stay for patients with
ALS was shown to increase functional mobility, but not
strength [2]. This study shows that patient and care-
giver education alone can improve function despite the
inability to regain strength.
Proper techniques can save energy, increase time ef-
ficiency, and decrease frustration. The occupational
therapist can teach simple changes such as donning a
shirt over the arms first then over the head and trunk to
make upper extremity dressing easier. Pants with elas-
tic waists or zippers on each side can be beneficial with
clothing management for toileting. Adapting buttons
on pants by making the button hole larger or attaching
a tab or loop to the zipper can also improve function for
patients with hand weakness [13]. Self-feeding can be
enhanced by positioning the patient’s arm and plate on
an elevated table or tray. This will eliminate the need to
lift the food against gravity. Not all dressing, toileting,
and self feeding strategies work in every instance. The
occupational therapist can work with each patient to
find the best technique or equipment for their situation
and recommend when a caregiver will have to provide
more assistance.
3. Psychological issues
The importance for caregiver education increases
with the onset of fronto-temporal dementia (FTD).
Cognitive deficits caused by degeneration of frontal
and temporal lobe cortical neurons can produce cog-
nitive impairment of executive functions in some pa-
tients with ALS [1,52]. FTD may cause a loss of
insight and difficulty with problem-solving, planning
and attention. Impulsivity can also be a symptom of
FTD [54]. Fronto-temporal dementia can cause pa-
tients with ALS to be unsafe. Therefore, caregivers and
home health staff must be educated in providing proper
assistance and supervision to prevent injury from falls.
Compliance with equipment use is decreased in ALS
patients who also have FTD, which further decreases
safety [43].
Often persons with ALS (even those without FTD)
resist using equipment or adaptive techniques. They
view the use of aids or adaptations as relinquishing
their independence. It is important to communicate
455
that these are just tools to keep them independent for
as long as possible.
Studies have shown that quality of life in ALS pa-
tients does not correlate with measures of physical
strength and function and does not necessarily decline
over time despite progressive weakening [54]. Physical
and occupational therapy can enhance quality of life
in persons who have ALS by helping them engage in
meaningful activities. The use of equipment and tech-
niques can allow a person with ALS to access social
supports and participate in recreational activities. This
may improve psychological well being. Referring a
patient to professional counseling services can also be
beneficial.
4. Fatigue
When patients are first diagnosed with ALS, their
most common complaint is loss of exercise tolerance
and/or fatigue [3]. This fatigue can be debilitating and
may be generalized or muscle-specific [50]. It is not
uncommon to see extreme fatigue in patients with fair-
ly normal muscle strength. A study done by Sanjak et
al. showed that muscle fatigue and muscle weakness
did not correlate with each other [50]. Another study
done by Sharma et al. showed that patients with ALS
had greater muscle fatigue than healthy controls. There
was no significant correlation between this fatigue and
upper motor neuron function ratings [53]. An addition-
al study done by Miller showed that muscles fatigue
faster in ALS patients whether they have overt weak-
ness or not [36]. Despite these findings, it is logical
to conclude that as muscles lose strength, generalized
fatigue may be greater. For example, when the primary
movers of a joint are weak, other muscles are recruited.
As these accessory muscles are less efficient, fatigue
occurs more quickly when a patient uses them [14].
Whether generalized or muscle-specific, fatigue must
be taken into consideration when a therapist is working
with a person with ALS.
Energy conservation is an important tool in fighting
fatigue and increasing function [25]. Simple adapta-
tions such as sitting versus standing to complete activ-
ities, taking rest breaks, and using adaptive tools can
improve function in patients with ALS. These tech-
niques can be applied in the home, the workplace and
the community. A 2003 study showed that an energy
conservation course given by occupational therapists
increased function for patients with Multiple Sclerosis
(MS) [59]. Both yoga and aerobic exercise have been
456 M. Lewis and S. Rushanan / The role of physical and occupational therapy in ALS treatment
shown to decrease fatigue in MS. This may be related
to the activity itself or to the socialization or the feeling
of self-efficacy the activity gave the participants [42].
Whether this can be generalized to persons with ALS
is still debatable.
4.1. Exercise: Pros and cons
The role of active exercise is controversial in the ALS
community [46,51,54]. This is because the literature
is inconclusive on the benefit of exercise in the patient
who has ALS. One problem is that there have been
very few human studies done exclusively on persons
with ALS. Many studies done on other neuromuscular
diseases have been generalized to those diagnosed with
ALS. Another problem is that studies on both humans
and mice with ALS have produced mixed results. One
theory about the mixed results is that exercise’s effect
on muscle strength is difficult to assess due to the vari-
ability and lack of predictability in the disease [21].
Another problem with studies is that upper motor neu-
ron(UMN )and lower motor neuron (LMN) symptoms
may react differently to exercise and it is hard to sepa-
rate them out [8].
Because of the uncertainty of its effects, exercise has
not been a standard treatment for ALS. In a Neurolo-
gy article called “Practice parameter: the care of the
patient with amyotrophic lateral sclerosis”, there is no
mention of exercise as a treatment [37]. In addition, the
Dutch protocol for rehabilitative management in ALS
does not include any mention of exercise [57]. Koller
and Hartung have reported that movement therapy is
of little use with weakness in ALS [33]. However,
there are some studies that have shown exercise to be
beneficial to those with neuromuscular diseases.
In a study by Milner-Brown and Miller, high re-
sistance exercise increased strength in strong muscles.
No improvement was seen in already weak muscula-
ture. This study included persons with slowly progress-
ing neuromuscular diseases–no ALS patients were in-
volved [38]. A 2006 study of persons with non-ALS
neuromuscular diseases showed that a home exercise
program that included both walking and lower extrem-
ity exercises increased strength [15]. It is not presently
clear that these results can be generalized to the ALS
population. The psychological benefits of exercise,
while not studied in this population, has been shown to
be positive in other populations [21].
There have been quite a few studies on the ALS
mouse done in the past five years. A 2005 study con-
cluded that moderate exercise in the ALS mouse could
help decrease the rate of motor neuron death [27]. A
2003 study showed that exercise delayed the onset of
ALS and extended lifespan in female mice only [60].
Another 2003 study showed that exercise increased the
lifespan of male mice as well. However, the authors
write that they “cannot be certain about the specific
effects of exercise in ALS mice” [31]. Adding to the
mixed results, a 2004 study showed that in the male
ALS mouse, high-intensity exercise decreased survival,
shortened lifespan and “hasten[ed] the deficit in motor
performance”. After looking at previous studies, the
authors of this study concluded that in the ALS mouse,
low-intensity exercise increases survival while moder-
ate exercise has no effect and high-intensity exercise
decreases survival [35].
Human studies have also shown that high resistance
exercise can be harmful to patients with disease pro-
cesses similar to ALS. A 1994 study of patients with
neuromuscular disease showed that high-resistance ex-
ercise can have detrimental effects. This was espe-
cially true with eccentric upper extremity exercises.
This study also suggested that exercising more than
four days a week may induce overwork weakness in
this population [29]. Studies have shown that repeated
maximal eccentric contractions can damage even nor-
mal muscle fibers. These muscles eventually adapt to
the exercise, but it is not known if muscles affected by
ALS can adapt [3].
A 1999 study reported that when ALS patients used
non-invasive positive pressure ventilation (NIPPV) dur-
ing exercise they could tolerate exercise for longer peri-
ods of time. This study also showed an increase in func-
tional independence measures (FIM) scores and a slow-
er decline of forced vital capacity (FVC) in the exercise
group as compared with a control group [44]. Though
not explicitly stated, it appears the control group did not
receive NIPPV. If this is the case, then the differences
could have been because the exercise group was receiv-
ing NIPPV. While this study does show that treadmill
exercise can be safe if NIPPV is used, it may not be re-
alistic. Many patients find the NIPPV interfaces awk-
ward to exercise in and these machines are not gener-
ally easy to transport during exercise. It is logical that
NIPPV would make exercise easier for patients with
ALS. The oxygen cost of exercise is significantly high-
er in persons with ALS according to a study done with
a bicycle ergometer [51].
A case study of one person with ALS showed that
manually resisted PNF patterns could improve mus-
cle strength. However, increases in strength were only
seen while using a gauge–no improvement was shown
 M. Lewis and S. Rushanan / The role of physical and occupational therapy in ALS treatment
with manual muscle testing [6]. Another case study
on one individual with ALS showed that exercise had
an increase or no improvement in his upper extremi-
ties (which displayed UMN signs only) and had no im-
provement on his lower extremities [51]. From this, the
authors concluded that muscles with UMN signs only
are more likely to benefit from exercise than those with
mixed UMN and LMN signs.
A 2007 trial showed that no adverse effects resulted
from a six month home program of moderate resistance
exercise done with muscle groups that had antigravity
strength or better. At the end of the study, the exercise
group showed that their lower extremity strength had
declined less over time and that their functional level
also had a slower decline than the group who partici-
pated in stretching only. However, this study had some
limitations. All subjects had a FVC of 90% and an
functional rating scale (FRS) greater than 30 so none of
the subjects were at an advanced stage of the disease.
Also, prior to starting the study the exercise group did
have a higher functional level than the stretching only
group. In addition, only eight subjects completed the
exercise portion of the study. The authors conclude that
resistive exercise can reduce disuse atrophy and that an
individualized, nonfatiguing exercise program should
be prescribed for patients with this disease [11].
Another study on exercise published in 2001 had pa-
tients undergo a twice daily 15 minute exercise program
that had “modest loads” and required the muscles to
“undergo significant changes in length”. There was no
statistical difference in strength, fatigue level, pain and
quality of life after six months between the exercising
group and the control group. There was a statistical
difference in the amount of spasticity and functional
mobility between the two groups at three months and
a trend but not a statistical difference at six months.
The exercise program patients had less spasticity and
better scores on a functional rating scale [18]. This
study is one that many other articles quote as evidence
that a moderate strength training program can be ben-
eficial. In fact, despite the lack of conclusive studies,
there are numerous articles that have recommendations
about exercise for persons with ALS.
Zawodniak stated that swimming was the “best,
multisystem conditioning exercise for the person with
ALS.” Benefits of an aquatic program include: in-
creased ambulation ability due to the decrease in grav-
ity, use of different musculature than normally used so
overused muscles get a break, reduced fear of falling
with activity and relaxation of spastic musculature [26].
When pool therapy is used, care must be taken that
457
the patient has proper supervision and/or assistance de-
pending on his or her functional level.
An article in Physical Therapy advised monitoring
and adapting exercise programs to prevent excessive
fatigue in patients. The journal stated that cramps or
fasciculations must be monitored as they could be signs
of muscle fatigue [12]. Jackson and Bryan wrote that
an improvement in endurance, fatigue, depression and
muscle efficiency can be seen with low impact aerobic
exercise. They also reported that “vigorous” exercise
and “heavy weightlifting” can damage muscles [25].
An article by Francis, Bach and DeLisa reported that
resistive exercise may be beneficial in patients with
a slow progression and only in muscles that are still
strong [21].
Simmons noted that moderate exercise has been
shown to be beneficial in slowly progressive neuro-
muscular diseases in muscles that still have adequate
strength. High-resistance exercises have not been
shown to be a better choice and could actually be detri-
mental in this same population [54]. Following these
principes, Chan and Sinaki suggested that six isometric
contractions held for six seconds each, along with sub-
maximal elastic band exercises could maintain and/or
improve strength in the ALS population [3,21].
Many articles agree that resistive exercise is not war-
ranted in weak musculature and recommend only that
other muscles be put through resistive exercise pro-
grams to prevent disuse atrophy. One might think
that muscular weakness, fatigue, and decreased en-
durance can be at least partially attributed to muscle
disuse. However, there is no study that links disuse
atrophy with disability in persons with neuromuscular
disease [3,14]. Sinaki stated that “in most patients,
no exercise other than that inherent in everyday am-
bulatory activities is indicated” [12]. In fact, Muller
stated that only one contraction a day at half the max-
imum strength is adequate to prevent atrophy. That
one contraction makes a large difference as he also re-
ported that if a muscle has zero contractions in one
day it will lose about 5% of its strength [41]. Kilmer
and Aitkens are widely quoted for their exercise prin-
ciples in the person diagnosed with ALS. Their sug-
gestions include: finding an activity the patient enjoys,
can socialize during and/or gives them a sense of ac-
complishment; avoiding eccentric and high-resistance
exercises; focusing on muscles that have anti-gravity
strength; watching for overwork weakness; adding rest
into the program; and discouraging patients from ex-
ercising to the point of exhaustion [14]. There is very
little disagreement with any of these principles in the
458 M. Lewis and S. Rushanan / The role of physical and occupational therapy in ALS treatment
literature.There is also agreement that range of mo-
tion(ROM) and stretching exercises should be initiat-
ed in every ALS patient who displays weak muscula-
ture. These exercises have been shown to be helpful
in maintaining passive motion which in turn can help
prevent or reduce pain and increase or maintain func-
tion [54]. ROM and stretching can also prevent contrac-
tures, frozen shoulder, deep vein thombosis and pul-
monary emboli [25,30]. Stretching and ROM should be
performed daily especially with those patients whose
function has declined [21].
5. Spasticity
Stretching and ROM exercise can be especially help-
ful in those patients who have spasticity. Many ALS
patients experience spasticity which is defined as “a ve-
locity dependent increase in muscle tone” [5]. This can
cause the patient to feel stiff or tight and limit volun-
tary movement. It can also decrease coordination and
function. In a paper published in 2005, Ashworth not-
ed that there was only one valid randomized controlled
study published on spasticity and ALS [4]. This study
(mentioned earlier in this paper) showed a short term
decrease in spasticity when patients followed a twice
daily, fifteen minute exercise routine that emphasized
range of motion with moderate resistance [18]. A study
done in 2000 was not specific to ALS patients but did
show that passive range of motion done regularly could
decrease spasticity [55]. Many authors recommend
slow (thirty second sustained) static muscle stretch-
ing [25,46]. Positioning can also help to decrease spas-
ticity. If splints or orthotics are used, the skin must be
carefully inspected so that pressure sores do not devel-
op [47]. Sometimes a patient needs medication to help
them deal with spasticity. Even though the physical or
occupational therapist will not be the one prescribing
the medication, they need to be aware of the implica-
tions. When drugs are used to control spasticity, they
may have unintended consequences such as increased
weakness, sedation and lightheadedness [61]. A bal-
ance needs to be found between treatment of spasticity
and side effects of medication. The detrimental effects
of spasticity can include: increased energy expenditure
with function, difficulty with the use of orthotics, and
pain [23]. It can also lead to decreased quality of life
and make mobility and ADLs difficult [46]. However,
a moderate amount of spasticity can actually be ben-
eficial when it comes to transfers and ambulation [7].
Bryan and Jackson recommend treating spasticity with
pharmaceutical intervention once it interferes with am-
bulation [25].
Botulinum toxin injection into the affected muscle
can also be useful in the person who has ALS. Howev-
er, just as with oral medication, one needs to be care-
ful as to not weaken a muscle enough to impair func-
tion [54]. Increased muscle tone can help a patient
stand and treating it can actually impair function if there
is little voluntary muscle control present [23]. A treat-
ment technique for both spasticity and weakness that
needs more research is electrical stimulation. A 1995
Japanese study reported that electrical stimulation may
cause a decrease in spasticity which in turn can increase
motion. The same study showed that an indwelling
intramuscular electrode could increase muscle strength
in the ALS patient, but that it was not effective after a
muscle had become denervated [24]. Electrical stimu-
lation has been tried in other settings to help maintain
motion and strength, but in order to get a contraction
the settings must be increased to a point that is very
painful [61].
6. Pain management
Although pain is not a primary symptom of ALS, it
is often present in patients with ALS. The incidence of
pain has been reported to be as high as 73% of the ALS
population [54]. It can be caused by muscle cramps, or
from joint complications caused by weakness or spas-
ticity [61]. Pain can also result from immobility, im-
proper transfer techniques used by caregivers and spinal
radiculopathy as the muscles of the spine weaken.
There are many ways a physical or occupational ther-
apist can help decrease or prevent pain in this pop-
ulation. Educating the patient and their caregivers
about the importance of daily stretching, transfer tech-
niques, proper support and positioning can help [21,
54]. Stretching and ROM are especially important with
pain control as they can actually desensitize nocicep-
tors [23]. In addition, modalities such as heat, massage
and TENS can be used to ameliorate the pain [61].
7. Conclusion
It is clear that physical and occupational therapy can
be beneficial to the person diagnosed with ALS. The
prescription of techniques and equipment are vital to
maintaining function and quality of life. Education of
the patient, as well as the caregiver, is also very impor-
 M. Lewis and S. Rushanan / The role of physical and occupational therapy in ALS treatment
tant to conserve energy and prevent injury. As far as ex-
ercise, it is important to keep in mind that already weak
musculature is not going to regain strength with repeat-
ed exercise. Many patients are diagnosed with ALS
after failing attempts to regain strength with physical
therapy.
More research is needed on the effects of exercise
on muscle strength and fatigue in the person with ALS.
Research is clear that resistive exercise is contraindi-
cated in muscles that lack anti gravity strength. Fur-
ther studies are needed to clarify what is acceptable
for exercise prescription in muscles with greater than
antigravity strength.
A standardized fatigue rating scale, specific to per-
sons with ALS, needs to be developed to further study
the effects of exercise on fatigue levels. Currently, stud-
ies use fatigue rating scales that have been standardized
for other disease processes such as MS.
There are no studies that show low impact cardio-
vascular exercise is detrimental to patients with ALS.
However, patients used NIPPV in the one study done
specifically on ALS patients and aerobic exercise. If
it was safe for them to exercise without the NIPPV is
unknown. We counsel patients to continue low impact
cardiovascular exercise if they enjoy it and if they are
not experiencing severe fatigue afterward. We advise
them to perform range of motion exercises as long as
their fatigue does not interfere with their ADL function,
work and leisure activity. If they do not have the energy
to perform range of motion exercises, we recommend
passive range of motion that can be performed by a
caregiver.
Despite the perception that ALS is a painless dis-
ease, we have found that many persons with ALS have
significant pain levels. Physical and occupational ther-
apy can have a large role in helping to prevent and re-
duce pain as they are the experts on positioning and
modalities.
Although more research is needed, it is clear that
physical and occupational therapy intervention is ben-
eficial in managing the symptoms of ALS.
References
[1] S. Abrahams, L.H. Goldstein, A. Al-Chalabi, A. Pickering,
R.G. Morris, R.E. Passingham et al., Relation between cogni-
tive dysfunction and pseudobulbar palsy in amyotrophic later-
al sclerosis, Journal of Neurology, Neurosurgery & Psychiatry
62 (1997), 464–472.
[2] M.L. Aisen, D. Sevilla, L. Edelstein and J. Blass, A double-
blind placebo-controlled study of 3,4-diaminopyridine in
amytrophic lateral sclerosis patients on a rehabilitation unit, J
Neurol Sci 138 (1996), 93–96.
459
[3] Ann Hallum, PhD, PT, Neurological Rehabilitation, Fourth
ed., Mosby, Inc., St. Louis, Missouri, 2001, 363–385.
[4] N.L. Ashworth, L.E. Satkunam and D. Deforge, Treat-
ment for spasticity in amyotrophic lateral sclerosis/motor
neuron disease.update of Cochrane Database Syst Rev.
2004;(1):CD004156; PMID: 14974059, Cochrane Database
of Systematic Reviews (2006), 004156.
[5] N.L. Ashworth, L.E. Satkunam and D. Deforge, Treat-
ment for spasticity in amyotrophic lateral sclerosis/motor
neuron disease.update in Cochrane Database Syst Rev.
2006;(1):CD004156; PMID: 16437474, Cochrane Database
of Systematic Reviews (2004), 004156.
[6] R.W. Bohannon, Results of resistance exercise on a patient
with amyotrophic lateral sclerosis. A case report, Phys Ther
63 (1983), 965–968.
[7] G.D. Borasio and R.G. Miller, Clinical characteristics and
management of ALS, Semin Neurol 21 (2001), 155–166.
[8] J.R. Brinkman and S.P. Ringel, Effectiveness of Exercise in
Progressive Neuromuscular Disease, Journal of Neurologic
Rehabilitation 5 (1991), 195–199.
[9] M.M. Brooke, B.J. de Lateur, G.C. Diana-Rigby and K.A.
Questad,Shoulder Subluxation in Hemiplegia: Effects of
Three Different Supports, Archives of Physical Medicine &
Rehabilitation 72 (1991), 582–586.
[10] L.K. Chen, W.C. Mann, M.R. Tomita and T.E. Burford, An
Evaluation of Reachers for Use by Older Persons with Dis-
abilities, Assistive Technology 10 (1998), 113–125.
[11] V. Dal Bello-Haas, J. Florence, A. Kloos, J. Scheirbecker,
G. Lopate, S. Hayes et al., A randomized controlled trial of
resistance exercise in individuals with ALS, Neurology 68
(2007), 2003–2007.
[12] V. Dal Bello-Haas, A.D. Kloos and H. Mitsumoto, Physical
therapy for a patient through six stages of amyotrophic lateral
sclerosis. see comment, Phys Ther 78 (1998), 1312–1324.
[13] M. Dallas and L. White, Clothing Fasteners for Women with
Arthritis, The American Journal of Occupational Therapy 36
(1982), 515–518.
[14] David D. Kilmer, MD, and Susan Aitkens, MS, Exercise in
Rehabilitation Medicine, Human Kinetics, 1999, 253–266.
[15] H. Dawes, N. Korpershoek, J. Freebody, C. Elsworth, N. van
Tintelen, D.T. Wade et al., A Pilot Randomized Controlled Tri-
al of a Home-Based Exercise Programme Aimed at Improving
Endurance and Function in Adults with Neuromuscular Dis-
orders, Journal of Neurology, Neurosurgery, and Psychiatry
77 (2006), 959–962.
[16] R. Dengler, Current treatment pathways in ALS: a European
perspective, Neurology 53 (1999), S4–S10.
[17] K. Dieruf, J. Poole, C. Gregory, J. Rodriguez and C. Spizman,
Comparative Effectiveness of the GivMohr Sling in Subjects
With Flaccid Upper Limbs on Subluxation Through Radiolog-
ic Analysis, Archives of Physical Medicine & Rehabilitation
86 (2005), 2324–2329.
[18] V.E. Drory, E. Goltsman, J.G. Reznik, A. Mosek and A.D.
Korczyn, The value of muscle exercise in patients with amy-
otrophic lateral sclerosis, J Neurol Sci 191 (2001), 133–137.
[19] A.L. Dubrovsky and R.E. Sica, Current treatment pathways
in ALS: a South American perspective, Neurology 53 (1999),
S11–S16.
[20] M.P. Foley, B. Prax, R. Crowell and T. Boone, Effects of Assis-
tive Devices on Cardiorespiratory Demands in Older Adults,
Physical Therapy 76 (1996), 1314–1319.
[21] K. Francis, J.R. Bach and J.A. DeLisa, Evaluation and rehabil-
itation of patients with adult motor neuron disease, Archives
of Physical Medicine & Rehabilitation 80 (1999), 951–963.
460 M. Lewis and S. Rushanan / The role of physical and occupational therapy in ALS treatment
[22] Y. Fuller and C.A. Trombly, Effects of Object Characteristics
on Female Grasp Patterns, The American Journal of Occupa-
tional Therapy 51 (1997), 481–489.
[23] M.E. Gormley, C.E. O’Brien and S.A. Yablon, A Clinical
Overview of Treatment Decisions in the Management of Spas-
ticity, Muscle & Nerve 6 (1997), S1–S232.
[24] I. Handa, N. Matsushita, K. Ihashi, R. Yagi, R. Mochizuki,
H. Mochizuki et al., A clinical trial of therapeutic electrical
stimulation for amyotrophic lateral sclerosis, Tohoku J Exp
Med 175 (1995), 123–134.
[25] C.E. Jackson and W.W. Bryan, Amyotrophic lateral sclerosis,
Semin Neurol 18 (1998), 27–39.
[26] C.R. Johnson, Aquatic therapy for an ALS patient, American
Journal of Occupational Therapy 42 (1988), 115–120.
[27] B.K. Kaspar, L.M. Frost, L. Christian, P. Umapathi and F.H.
Gage, Synergy of insulin-like growth factor-1 and exercise in
amyotrophic lateral sclerosis, Ann Neurol 57 (2005), 649–655.
[28] M. Kauppi, M. Neva and H. Kautiainen, Headmaster Col-
lar Restricts Rheumatoid Atlantoaxial Subluxation, Spine 24
(1999), 526–528.
[29] D.D. Kilmer, Response to resistive strengthening exercise
training in humans with neuromuscular disease, American
Journal of Physical Medicine & Rehabilitation 81 (2002),
S121–S126.
[30] F. Kimura, S. Ishida, D. Furutama, Y. Hirata, T. Sato, T.
Hosokawa et al., Wheelchair economy class syndrome in amy-
otrophic lateral sclerosis, Neuromuscular Disorders 16 (2006),
204–207.
[31] I.G. Kirkinezos, D. Hernandez, W.G. Bradley and C.T.
Moraes, Regular exercise is beneficial to a mouse model of
amyotrophic lateral sclerosis, Ann Neurol 53 (2003), 804–807.
[32] C. Kling, A. Persson and A. Gardulf, The ADL Ability and
Use of Technical Aids in Persons with Late Effects of Polio,
The American Journal of Occupational Therapy 56 (2002),
457–461.
[33] H. Koller and H. Hartung, Textbook of Neural Repair and Re-
habilitation: Medical Neurorehabilitation, Cambridge Uni-
versity Press, 2006, 657–676.
[34] L.S. Krivickas, L. Shockley and H. Mitsumoto, Home care
of patients with amyotrophic lateral sclerosis (ALS), J Neurol
Sci 152 (1997), S82–S89.
[35] D.J. Mahoney, C. Rodriguez, M. Devries, N. Yasuda and
M.A. Tarnopolsky, Effects of high-intensity endurance exer-
cise training in the G93A mouse model of amyotrophic lateral
sclerosis, Muscle Nerve 29 (2004), 656–662.
[36] R.G. Miller, Role of fatigue in limiting physical activities in
humans with neuromuscular diseases, American Journal of
Physical Medicine & Rehabilitation 81 (2002), S99–S107.
[37] R.G. Miller, J.A. Rosenberg, D.F. Gelinas, H. Mitsumoto, D.
Newman, R. Sufit et al., Practice parameter: the care of the
patient with amyotrophic lateral sclerosis (an evidence-based
review): report of the Quality Standards Subcommittee of the
American Academy of Neurology: ALS Practice Parameters
Task Force, Neurology 52 (1999), 1311–1323.
[38] H.S. Milner-Brown and R.G. Miller, Muscle Strengthening
Through High-Resistive Weight Training in Patients with Neu-
romuscular Disorders, Archives of Physical Medicine & Re-
habilitation 69 (1988), 14–19.
[39] S.C. Mitchell, Dressing Aids, British Medical Journal 302
(1991), 167–169.
[40] H. Mitsumoto and M. Del Bene, Improving the quality of
life for people with ALS: the challenge ahead, Amyotrophic
Lateral Sclerosis & Other Motor Neuron Disorders 1 (2000),
329–336.
[41] E.A. Muller, Influence of Training and of Inactivity on Mus-
cle Strength, Archives of Physical Medicine & Rehabilitation
(1970), 449–462.
[42] B.S. Oken, S. Kishiyama, D. Zajdel, D. Bourdette, J. Carlsen,
M. Haas et al., Randomized Controlled Trial of Yoga and
Exercise in Multiple Sclerosis, Neurology 62 (2004), 2058–
2064.
[43] R.K. Olney, J. Murphy, D. Forshew, E. Garwood, B.L. Miller,
S. Langmore et al., The effects of executive and behavioral
dysfunction on the course of ALS, Neurology 65 (2005), 1774–
1777.
[44] A.C. Pinto, M. Alves, A. Nogueira, T. Evangelista, J. Car-
valho, A. Coelho et al., Can amyotrophic lateral sclerosis pa-
tients with respiratory insufficiency exercise? J Neurol Sci
169 (1999), 69–75.
[45] A. Pizzi, G. Carlucci, C. Falsini, S. Verdesca and A. Grippo,
Application of a Volar Static Splint in Poststroke Spasticity of
the Upper Limb, Archives of Physical Medicine & Rehabili-
tation 86 (2005), 1855–1859.
[46] J.A. Rocha, C. Reis, F. Simoes, J. Fonseca and J. Mendes
Ribeiro, Diagnostic investigation and multidisciplinary man-
agement in motor neuron disease, J Neurol 252 (2005), 1435–
1447.
[47] J.A. Rocha, C. Reis, F. Simoes, J. Fonseca and J. Mendes
Ribeiro, Diagnostic investigation and multidisciplinary man-
agement in motor neuron disease, J Neurol 252 (2005), 1435–
1447.
[48] G. Roth, The Sock Donner, The American Journal of Occu-
pational Therapy 1 (1969), 75–76.
[49] J.L. Sancho-Bru, D.J. Giurintano, A. Perez-Gonzalez and M.
Vergara, Optimum Tool Handle Diameter for a Cylinder Grip,
Journal of Hand Therapy 16 (2003), 337–347.
[50] M. Sanjak, J. Brinkmann, D.S. Belden, K. Roelke, A. Wa-
clawik, H.E. Neville et al., Quantitative assessment of mo-
tor fatigue in amyotrophic lateral sclerosis, J Neurol Sci 191
(2001), 55–59.
[51] M. Sanjak, W. Reddan and B.R. Brooks, Role of muscular
exercise in amyotrophic lateral sclerosis, Neurol Clin 5 (1987),
251–268.
[52] H. Schreiber, T. Gaigalat, U. Wiedemuth-Catrinescu, M. Graf,
I. Uttner, R. Muche et al., Cognitive function in bulbar-
and spinal-onset amyotrophic lateral sclerosis. A longitudinal
study in 52 patients, J Neurol 252 (2005), 772–781.
[53] K.R. Sharma, J.A. Kent-Braun, S. Majumdar, Y. Huang, M.
Mynhier, M.W. Weiner et al., Physiology of fatigue in amy-
otrophic lateral sclerosis, Neurology 45 (1995), 733–740.
[54] Z. Simmons, Management strategies for patients with amy-
otrophic lateral sclerosis from diagnosis through death, Neu-
rologist 11 (2005), 257–270.
[55] C. Skold,Spasticity in Spinal Cord Injury: Self and Clini-
cally Rated Intrinsic Fluctuations and Intervention-Induced
Changes, Archives of Physical Medicine & Rehabilitation 81
(2000), 144–149.
[56] M. Trail, N. Nelson, J.N. Van, S.H. Appel and E.C. Lai,
Wheelchair use by patients with amyotrophic lateral sclero-
sis: a survey of user characteristics and selection preferences,
Archives of Physical Medicine & Rehabilitation 82 (2001),
98–102.
[57] J.P. van den Berg, I.J. de Groot, B.C. Joha, J.M. van Haelst,
P. van Gorcom and S. Kalmijn, Development and implemen-
tation of the Dutch protocol for rehabilitative management in
amyotrophic lateral sclerosis, Amyotrophic Lateral Sclerosis
& Other Motor Neuron Disorders 5 (2004), 226–229.
 M. Lewis and S. Rushanan / The role of physical and occupational therapy in ALS treatment
[58] E.R. van Teijlingen, E. Friend and A.D. Kamal, Service use
and needs of people with motor neurone disease and their
carers in Scotland, Health & Social Care in the Community 9
(2001), 397–403.
[59] S. Vanage, K. Gilbertson and V. Mathiowetz, Effects of Ener-
gy Conservation Course on Fatigue Impact for Persons with
Progressive Multiple Sclerosis, The American Journal of Oc-
cupational Therapy 57 (2003), 315–323.
[60] J.H. Veldink, P.R. Bar, E.A. Joosten, M. Otten, J.H. Wokke
and L.H. van den Berg, Sexual differences in onset of dis-
ease and response to exercise in a transgenic model of ALS,
Neuromuscular Disorders 13 (2003), 737–743.
461
[61] A.D. Walling, Amyotrophic lateral sclerosis: Lou Gehrig’s
disease. see comment, Am Fam Physician 59 (1999), 1489–
1496.
[62] Z. Zhuang, T.J. Stobbe, J.W. Collins, H. Hsiao and G.R.
Hobbs, Psychophysical Assessment of Assistive Devices
for Transferring Patients/Residents, Applied Ergonomics 31
(2000), 35–44.
[63] Z. Zhuang, T.J. Stobbe, H. Hsiao, J.W. Collins and G.R.
Hobbs, Biomechanical Evaluation of Assistive Devices for
Transferring Residents, Applied Ergonomics 30 (1999), 285–
294.