Journal of Bodywork & Movement Therapies (2009) 13, 328e335

available at www.sciencedirect.com

journal homepage: www.elsevier.com/jbmt

PALLIATIVE CARE REVIEW

Interdisciplinary palliative care, including massage,

in treatment of amyotrophic lateral sclerosis
Kendra Blatzheim, CMT, NMT*

MeridiansdA Center for the Healing Arts, 321 Main Street, Gaithersburg, MD 20878, USA

Received 25 May 2007; received in revised form 16 March 2008; accepted 29 April 2008

KEYWORDS Summary Amyotrophic lateral sclerosis (ALS) is a progressive fatal neurological disease that
Amyotrophic lateral affects approximately 20,000 Americans. Symptoms include muscle weakness, fatigue, twitch-
sclerosis (ALS); ing, atrophy, spasticity, pain, oropharyngeal dysfunction, pseudobulbar affect, weight loss,
Lou Gehrig; and respiratory impairment. Death occurs within 3e5 yr after onset of symptoms, with diag-
Massage; nosis taking from 11 to 17.5 months. The only FDA-approved drug for ALS is Riluzole, which only
Palliative care; increases the life expectancy by a few months. All other treatments for ALS provide symptom
Interdisciplinary; management to improve the patient’s quality of life. An interdisciplinary palliative care team
Treatment methods for the ALS patient helps to reduce the stress that the illness places on families. Massage can
be a useful adjunctive treatment for spasticity and pain when medication side effects are
unwanted. A holistic interdisciplinary palliative care team supports both the patient and the
family improving their quality of life.
ª 2008 Elsevier Ltd. All rights reserved.

Introduction ‘‘sclerosis’’ means scarring. ALS affects voluntary move-

Amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease,
is idiopathic; gradual and progressive neuromotor disease
with no definitive cause. Jean-Marie Charcot named the
disease, amyotrophic lateral sclerosis, in 1874, after what
he found in patients with ALS. Amyotrophic describes the
effects on the muscular system and is from the Greek
language. In medical terminology ‘‘a’’ means no, ‘‘myo’’
means muscle, and ‘‘trophic’’ refers to nourishment;
‘‘lateral’’ refers to the spinal tract that is involved; and
* Tel.: þ1 301 275 1886.
E-mail address: kendrablatzheim@comcast.net
ments; symptoms include muscle weakness and atrophy;
muscle spasticity in limbs and bulbar muscles, causing not
only the loss of movement but also oropharyngeal
dysfunction; weight loss; and, in end stage, loss of respi-
ration (Chio et al., 2006; Galbussera et al., 2006; Ganzini
et al., 2002; Gomes et al., 2006). In up to 50% of ALS
patients, pseudobulbar affect is found (Rochs et al., 2005).
Pseudobulbar affect is uncontrolled laughing or crying and
is thought to be from damage to the frontal lobe of the
brain (Rochs et al., 2005). Neurons that control the eyes
and bladder are killed in the later stages of the disease
(Bruijn and Cudkowicz, 2006).
Approximately 20,000 Americans have ALS with
approximately 5000 more diagnosed every year (Gomes

1360-8592/$ - see front matter ª 2008 Elsevier Ltd. All rights reserved.
doi:10.1016/j.jbmt.2008.04.040
Interdisciplinary palliative care, including massage, in treatment of amyotrophic lateral sclerosis 329

et al., 2006; NIH; accessed on October 8, 2006). ALS affects
all races with the typical age of infection being between 40
and 60 yr, men being more prevalently affected (Czaplinski
et al., 2006; Ganzini et al., 2002; Gomes et al., 2006). ALS
affects the upper and lower motor neurons, destroying the
brain’s ability to send messages to the target muscle by
way of the spinal cord (Figure 1aec). Because ALS is
a gradual progressive disease, the symptoms may be mis-
diagnosed until they become more severe, with the
average time to diagnosis being from 11 to 17.5 months
(Bello-Haas et al., 1998; Gomes et al., 2006). There are
thought to be two different causes of ALS: it could be an
autoimmune illness or it could have a genetic association
(Ganzini et al., 2002). The genetic link is seen in 5e10% of
patients (Appel, 2006; Gomes et al., 2006). ALS is a fatal
disease since there is no cure. The only drug treatment for
ALS is Riluzole, which may slow down the natural
progression of the illness, possibly prolonging life (Bruijn
et al., 2006; Czaplinski et al., 2006). All other treatments
for ALS are to manage symptoms and improve the quality of
life (Galbussera et al., 2006). Therefore, a multi-team
approach is beneficial to support patients and their families
(Bruijn and Cudkowicz, 2006; Galbussera et al., 2006;
Jenkinson et al., 1999). While treating patients the benefit
needs to be assessed, not all healthcare professionals agree
that massage is useful for the ALS patient (Sancho and
Boisson, 2006) The purpose of this paper is to explore the
effects of ALS on a patient, and the benefit of massage
therapy for the patient and their family.
Stages of ALS
The importance of knowing the stages of ALS helps pre-plan
for the patient’s increasing needs. There are six stages that
are based on the ALS patient’s abilities outlined by Bello-
Haas et al. (1998) study. See Table 1 for Stages of ALS.
Issues facing the ALS patient and family
Once diagnosed, the medical community wants the ALS
patient to focus on his death, considering advanced
directives, living wills, and quality of life issues (Ganzini
et al., 2002). While these issues are important to the
autonomy of the patient, so is the need to live life in the
face of a terminal illness. Continuity of care is also
important in a complex, life-threatening illness. Receiving
support from a palliative care medical team can make
a difference in the life of the patient and the family. The
autonomy of the patient may be affected by the wishes of

Figure 1 (a) The brain and the lateral cortical spinal track within the spinal cord, leading to the muscles. (b) Shows where the
upper motor neurons interdigitate with the lower motor neurons. It is the lower motor neurons that send the signal to the muscles.
(c) Shows the location of the lateral cortical spinal track in the spinal cord.
330 K. Blatzheim

Table 1 Stages of ALS adapted by Bello-Haas et al. (1998).

Stages of ALS
Stage 1 The first stage of ALS is marked by limited muscle weakness, causing poor endurance. The patient is still
independent.
Stage 2 The patient shows moderate weakness and cardiovascular deconditioning.
Stage 3 The ALS patient has severe weakness but is still ambulatory. The patient may need help standing up from
a seated position. This is the stage when adaptive equipment is needed because of mild to moderate limitation.
Stage 4 In this stage the legs have severe weakness while the arms show mild weakness.
Stage 5 The patient’s mobility and endurance have deteriorated and the patient experiences progressive weakness.
Stage 6 Here the patient requires the maximum assistance with activities of daily living. The patient is now bedridden.

the family. Since both the patient and the family members
may have different views on treatment and quality of life,
communication is extremely important (Trail et al., 2003,
2004). The patient and the caregivers must both be
educated in treatment options to limit disagreements (Trail
et al., 2003).
The dying person finds time important and wants to use
his time in a productive manner. Because ALS affects
movement and speech, the ability to maximize autonomy
holds greater meaning than in other illnesses that do not
affect these skills. Within 3e5 yr from first symptoms, the
person may lose his ability to move, swallow, eat, talk, and
breathe, giving the patient a very limited time to say and
do all activities he has postponed (Ganzini et al., 2002).
In the critically ill person, continuity of care can mean
a major difference in the quality of life. Continuity of care
can also save time and energy for the patient and the
family, decreasing stress levels as the treatment team
works together. The family is busy taking care of the
patient; this time increases, as the patient gets sicker
(Cannaets et al., 2004). The family should not be expected
to relay important health information from healthcare
provider to healthcare provider.
A palliative care unit that has an interdisciplinary focus,
including massage, to care for the ALS patient will support
patients and their families. The focus on life in a palliative
care unit changes the outlook for the patient and the family
to one of living instead of an outlook of dying. The outlook
on life helps the patient and their family live life to the
fullest. Since the palliative care unit’s goal is to maximize
patient’s care and quality of life, the patient maintains
autonomy. Cannaets et al. (2004) shows that a palliative
care unit improves the quality of life for both the caregivers
and the patient with ALS. Rochs et al. (2005) found that 90%
of 171 ALS patients died peacefully.
The stress associated with ALS is multilayered. What the
patient feels is stressful may not be what the caregiver
feels is stressful.
The physiological effects of stress decrease the
immune response for both the caregiver and the patients
with ALS (Trail et al., 2004). In a number of studies,
massage has been shown to decrease hormones that are
associated with stress, anxiety, depression and pain
(Field et al., 2007, 2005; Lund et al., 2006). Cortisol has
been blamed for adversely affecting cells of the immune
system; by decreasing the levels of cortisol the immune
system is better able to mount an immune response (Field
et al., 2007). Studies have shown that 15e20 min massage
can have an effect on physical and psychological stress by
decreasing anxiety, and increasing mental relaxation
(Bost and Wallis, 2006; Ouchi et al., 2006).
With the progression of the symptoms, patients and their
families face new and difficult issues. Coping mechanisms
that help patients and their families accomplish activities
of daily living; bathing, dressing, toilet use, transferring,
difficulty in using hands and arms, turning and moving in
bed, picking objects up, holding and turning pages in books,
writing clearly, doing jobs around the house, talking,
walking, and eating, need to be revised frequently (Bello-
Haas et al., 1998; Jenkinson et al., 1999). Issues facing the
caregivers are numerous and can be overwhelmingly time
consuming. Not having enough personal time or being over
burdened with responsibility can have a direct effect on the
caregivers’ feelings toward and relationships with the ALS
patient. The caregivers may also have issues about the care
they are giving to the ALS patient, such as what to do, or
whether they should do more. The increased responsibility
issues that the caregivers feel places stress on the care-
givers and the patients and may have a psychosocial effect
on the caregivers. The complex issues facing the patient
and the caregivers have negative effects on the quality of
life and possibly the caregivers’ health (Trail et al., 2004).
Symptoms
Symptoms of ALS include muscle weakness, fatigue,
twitching, atrophy, spasticity, muscular pain, constipation,
oropharyngeal dysfunction, pseudobulbar affect, weight
loss, and breathing issues. All the voluntary muscles in the
body can be affected based on what area of neurons are
dying. Many of the symptoms are interrelated. There are
also case reports of ALS patients developing complex
regional pain syndrome from the immobility caused by this
illness (Shibata et al., 2003).
Skeletal muscle dysfunction
Skeletal muscle dysfunction includes muscle weakness,
fatigue, twitching, atrophy, spasticity, and pain. Again,
many of these symptoms are interrelated. Because of the
lower motor neuron death, the muscles are not getting
the nerve’s impulse (Kent-Braun and Miller, 2000). Motor
units cannot be recruited causing a decrease in force for
that muscle movement (Kent-Braun and Miller, 2000).
Muscle fatigue has been found to be caused by upper
Interdisciplinary palliative care, including massage, in treatment of amyotrophic lateral sclerosis
motor neuron death, according to a study by Kent-Braun
(Kent-Braun and Miller, 2000). There are many different
causes for muscle atrophy, and it is not well understood
(Lecker et al., 2004; Leger et al., 2006). ALS affects the
neuronal pathways that carry the signal to the muscle.
Since the signal is not reaching the muscle, it is not
recruited, causing disuse of the muscle. Given the Law of
Reversibility, if a muscle is not used, that muscle will
atrophy which may explain some of the atrophy found in
the ALS patient. Muscle twitching and spasticity of ALS
patients reflects damage to the corticospinal tract
(Figure 1b) and the suprasegmental control of the spinal
cord segmental reflexes (Ashworth et al., 2006). Spas-
ticity affects the ease of movement and the activity of
daily living for the ALS patient. Spasticity also increases
joint contracture that can cause pain and increase
movement issues. As ALS progresses, physical pain, from
muscle contraction and spasticity, becomes an issue for
the patient. Pain can also be caused by disuse and from
previous musculoskeletal issues. If the pain is left
untreated, it decreases the quality of life. Several studies
have explored the effects of massage on healthy indi-
viduals. The studies have found massage to be effective
for muscle recovery for grip strength after fatigue but
results were not statistically significant for improvement
in sports performance (Brooks et al., 2005; Harmer, 1991;
Hemmings et al., 2003; Robertson et al., 2004). While this
was studied on healthy people one could expect to find
the same with the ALS patient population aiding in the
symptom of fatigue the patient experiences from the
disease (Ernst, 1998).
Oral-motor dysfunction
Oropharngeal dysfunction, bulbar palsy, is common in ALS.
This dysfunction leads to problems involving talking, swal-
lowing and salivating, and possibly aspiration pneumonia as
the disease progresses. The symptom of weight loss may be
secondary to the constellation of symptoms associated with
bulbar palsy, where the muscles of the mouth are affected,
as well as upper limb control issues. Weight loss issues have
been thought of as secondary issues linked with breathing
issues (Desport et al., 2005). As the ALS patient has a harder
time breathing, the respiratory muscles need to work harder,
using more calories (Desport et al., 2005). A study by Desport
et al. (2005) found that breathing issues measured by vital
capacity were not associated with weight loss. The same
study found that there is a hypermetabolism component
associated with an average of 10% of ALS patients (Desport
et al., 2005). Weight loss may be associated with muscle
weakness of the neck. The patient is no longer able to hold
his head up to eat or drink (Bello-Haas et al., 1998). Weight
loss may also be associated with constipation. Medications,
poor hydration, or the muscles of the gut not working prop-
erly due to motor neuron death may cause constipation with
the ALS patient (Francis et al., 1999). Dehydration is an
under-recognized issue with the ALS patient (Francis et al.,
1999). Some of the causes of dehydration are difficulties
swallowing, thickened secretion, fatigue, movement issues,
and malaise (Francis et al., 1999). Several studies have
investigated the effects of massage on weight gain in pre-
term, full-term newborn infants and rats, showing that
331
massage increases weight gain and also increases gastroin-
testinal hormones that aid in the absorption of nutrients
(Field, 2001, 2004, 2006; Holst et al., 2005). One could
expect to see the same in the ALS patient population.
Massage may be helpful for the ALS patients that exhibits
decreased control with bowl function. A study on spinal cord
injury patients with neurogenic bowl dysfunction found that
decreased abdominal distention and fecal incontinence
while increasing defecation frequency occurred after
abdominal massage (Ayas et al., 2006).
Treatment
There are many studies looking at curative treatments for
ALS. Currently treatment for ALS is treating the symptoms,
thus improving the quality of life for the ALS patient (Trail
et al., 2004). The only FDA-approved treatment for ALS is
Riluzole (Bruijn and Cudkowicz, 2006). Riluzole has been
shown to moderately increase the quantity of life (Bruijn
and Cudkowicz, 2006). Many studies are looking for other
treatment methods. The US Food and Drug Administration,
as an investigational drug, have approved Myotrophin (IGIF-
I). This has shown promise in promoting regeneration of
motor neurons and the survival of motor nerves (Bello-Haas
et al., 1998).
Currently, the goals of treatment should be to help the
patient maintain mobility and function, optimize current
function, and help the patient manage symptoms to improve
the patient’s quality of life (Ashworth et al., 2006; Bello-Haas
et al., 1998). Since ALS causes muscle weakness it would make
sense to start an exercise program to assist in strength main-
tenance. However, studies have shown that there is only
a short term, 3e6 month, benefit for exercise (Drory et al.,
2001). The use of creatine supplementation for ALS patients
has shown some temporary improvement for specific situations
as a symptomatic treatment (Mazzini et al., 2001).
Muscular skeletal mobility concerns
Pain
The ALS patient may have had muscular pain before the
onset of symptoms that were attributed to common
everyday life. Muscle pain can be aggravated by the loss of
movement as the disease progresses (Shibata et al., 2003).
ALS causes spasticity that increases muscle pain as well as
joint pain. The first line of treatment for pain includes
massage, physical therapy, non-narcotic analgesics, anti-
inflammatory, and antispasticity medications (Miller et al.,
1999). Opioids are used when the pain is not controlled with
the above list.
In the later stages of ALS the inability to move and
change positions can cause pain. To address this issue,
special mattresses can be used to rotate the patient from
one side to another. During the day assistive range-of-
motion (ROM) and exercise may be helpful.
Activities of daily living
Because of muscle weakness, the ALS patient may find
orthosis to be helpful in completing tasks of daily living.
332
Occupational therapists are responsible for helping the ALS
patient maintain independence safely as the symptoms
progress. As muscle weakness and joint instability prog-
resses, adaptive equipment such as slings for shoulder
discomfort and foot and ankle bracing to improve gait and
decrease risks of falling may be needed. Environmental
modifications to maintain independence consist of raised
toilet seats, grab bars, wheelchairs, reaching and grabbing
devices, and tub seats (Rochs et al., 2005). Energy conser-
vation tools can be taught to the ALS patients. Occupational
and physical therapist would help the ALS patient. Occupa-
tional therapist will assist the patient and family by imple-
mentation of adaptive equipment and education on energy
conservation. Range of motion (ROM) and bracing, for
example the lower extremity, will be the task of the physical
therapy team leading to better gait and function.
Muscle
ROM exercise is important for the ALS patient. Decreased
motion of any joint may decrease the ability for the patient
to interact with his environment. Exercising that includes
cardiovascular and muscle strength should be encouraged,
with caution not to over exercise, if the patient over
exercises, spasticity and cramping can increase. As the
patient becomes weaker, bracing of muscles may be
needed to improve gait or grasping strength. By improving
the patient’s gait, there is a decreased risk for falling, and
by improving grasping strength ADLs (activities of daily
living) are accomplished with less energy. As the patient
becomes more affected by ALS, there will be a decrease in
movement. This decrease may lead to spasticity and
cramping. Spasticity can cause decreased ROM in any joint.
This decreased ROM can cause joint changes and lead to
pain and movement issues. Decreased ROM leads to spas-
ticity that leads to decreased movement that leads to
decreased ROM, a vicious cycle. Medications used to
decrease spasticity in other conditions have unwanted side
effect for the ALS patient: muscle weakness and fatigue.
Medications that are used include quinine sulfate, diaz-
epam, carbamazepine, phenytoin, baclofin, and tizanidine.
The physical therapists can work with the ALS patient to
maintain or increase the joint’s ROM either actively or
passively. Massage therapists can also address spasticity,
cramping, and ROM of joints by soft-tissue manipulation,
stretching and passive range of motion (Bello-Haas et al.,
1998; Diego et al., 2002; Hernandez-Reif et al., 2001; Mori
et al., 2004; Morl et al., 2005; Preyde, 2000; Rochs et al.,
2005). A number of soft-tissue manipulation modalities can
release trigger point and other tissue to promote circula-
tion and reduce spasm, contraction and increase function
(Preyde, 2000). Keep in mind that ALS is a degenerative
disease so musculoskeletal benefits may be temporary since
the cause of spasticity is neurological (Cherkin et al., 2001;
Delaney et al., 2002).
Oral-motor concerns
Sialorrhea
This symptom has a social issue that can cause problems for
the ALS patient. Since ALS affects the muscles of the mouth
causing poor management for the saliva, the patient drools.
K. Blatzheim
Sialorrhea symptoms can be confused with symptoms that
are caused by thick mucus. The treatments are not alike so
diagnosis is important. Sialorrhea could be treated with
medications such as glycopyrrolate, benztropind, trans-
dermal hyoscine, atropine, trihphenide hydrocholoride or
amitripty (Miller et al., 1999). The treatment for thickened
mucus is propranolol or metoprolol (Miller et al., 1999). In the
later stages of ALS, or when the patient is ill, manual cough
assistance may be needed (Miller et al., 1999).
Dysarthria and communication
Approximately 80% of all ALS patients develop communi-
cation issues resulting from both upper and lower neuron
impairment (Francis et al., 1999). Early symptoms may be
a nasal sound to the patient’s voice (Francis et al., 1999). A
small percentage (30%) has problems abducting their vocal
cords (Francis et al., 1999). As the muscles of respiration
are affected, then the vital capacity is decreased, limiting
the patient’s breath. Insufficient breath affects the volume
of the ALS patient’s voice and proper phrasing of sentences.
A speech therapist can support the patients and their
families. The patient can start exercises to strengthen the
tongue and diaphragm. The speech therapist can help the
patient with phrasing so the speech is better understood. A
potential fix for the family may be fitting the primary
caregiver with a hearing aid, if the caregiver is diagnosed
with a hearing loss. The caregiver to aid in communication,
leading to an economic effective solution, can use ampli-
fication devices. If communication is severely affected, the
aid of augmentative devices, such as a simple paper and
pencil or a computer with a high tech keyboard base, will
assist in communication (Francis et al., 1999).
Nutrition
Nutrition is affected by many different issues for the ALS
patient. Symptoms such as oral-motor weakness, muscle
fatigue, choking risks, upper limb control, and head control
can cause self-feeding to be challenging (Miller et al.,
1999). Poor nutrition can cause a worsening of muscle
atrophy, and other symptoms such as weakness and fatigue
(Miller et al., 1999). As swallowing becomes harder, the
patient is at increased risk for dehydration and aspiration
pneumonia. In the beginning stages a speech pathologist
can assist with modifications of food consistency. The
speech pathologist will also evaluate the patient to deter-
mine if the patient is at an increased risk for aspiration. A
percutaneous endoscopic gastrostomy (PEG) is indicated if
the patient cannot maintain his own weight or hydration
status or is at risk for aspiration pneumonia. The placement
of a PEG is also dependant on respiratory issues. The
patient must be able to maintain his own airway after the
procedures so if his vital capacity is below 50% the surgery
cannot be performed. The ALS patient who has a PEG may
still eat.
The physical issues that surround eating may need only
slight modifications to resolve. The ALS patient may have
better control of his eating utensils with simple modifica-
tions. Adding foam around the handle of the utensil makes
grasping the tool easier for weakened or fatigued muscles.
Neck supports to hold the head in an upright position can also
be very helpful in self-feeding. As the neck muscle becomes
more affected, a stronger neck collar may be needed.
Interdisciplinary palliative care, including massage, in treatment of amyotrophic lateral sclerosis
Table 2 Main stress from ALS adapted from Trail et al. (2003, 2004).
Main stress from ALS
Patient’s
Worries about illness progression and dependency issues
Problems speaking
Muscle weakness
Respiratory concerns
Respiratory issues greatly affect the life expectancy of the
ALS patient. Symptoms of respiratory insufficiency include
dyspnea that may be associated with exercise or position,
marked fatigue that may or may not be associated with
nocturnal waking or hypoventilation, morning headaches
from hypoventilations, and insomnia from hypoventilation,
anxiety or physical discomfort. With positional dyspnea the
patient may experience techypnea or tachycardia. Posture
misalignments of the spine that are found in patients who
have a history of neck and back, and/or rib misalignments
can lead to a mechanical disadvantage for breathing (Yoz-
batiran et al., 2006). Nerve root irritation and muscle
spasm may also have an inhibitory effect on the patient’s
lung volume and chest expansion (Yozbatiran et al., 2006).
Respiratory symptoms can also include tremors, cyanosis,
and increased respiratory infections (Rochs et al., 2005).
The ALS patient will need to decide on what respiratory
support he wants before he needs a more invasive treat-
ment. The simplest treatment for dyspnea is treatment
with oxygen, as needed, and calming techniques.
Treatments that include postural drainage and manual-
assisted coughing can be helpful in clearing the airway of its
secretions (Rochs et al., 2005). The use of external resis-
tance inspiratory muscle training has shown promise in
improving lung functions (Rochs et al., 2005). The use of an
alternating pressure devise can also be helpful. As the
disease progresses, treatment for respiratory symptoms can
include a bilevel positive pressure ventilation (BICAP) or
nocturnal intermittent positive pressure ventilation
(NIPPV), both treatments are the first level of mechanical
ventilation used with ALS patients. An external nasal mask
can be worn to help with both non-invasive ventilators. For
invasive ventilation a tracheotomy is needed. By adding the
non-invasive ventilation, respiratory symptoms, such as
dyspnea, hypoxemia, atclectasis, and respiratory infection,
may decrease. When respiratory symptoms are decreased
the patient is healthier leading to a longer quantity and an
improved quality of life (Chaisson et al., 2006). Treatment
with mechanical ventilation is voluntary. Francis et al.
(1999) found that ALS patients who choose ventilator
support may be ineligible for hospice care, since the
ventilator can be seen as a medical device used to
improved the quantity of life.
It is important to note that treatment for other ALS
symptoms may affect respiratory drive. The physical pain
an ALS patient experiences is treated with opiates, while
spasticity is treated with muscle relaxors; both treatments
decrease the respiratory drive. Physical modalities used in
the non-ALS including hot packs, physical therapy and
massage has shown a significant decrease in pain scores and
in peak expiratory flow rate with neck pain, and an overall
333
Caregivers
Worries about the patient’s illness progression,
Concerns about patient’s swallowing and eating difficulties,
Worries about loved ones’ emotional and physical well-being
increase in thoracic expansion (Yozbatiran et al., 2006).
This finding should also hold true for the ALS patient since
the mechanical advantage would be the same. Since the
ALS patient develops decreased respiratory function,
treating pain or spasticity can decrease the patient’s
quantity of life.
One of the side effects of compromised breathing is
anxiety. In the last phase of respiratory insufficiency the
treatment of anxiety is needed to improve the quality of
life for the ALS patient. As the anxiety progresses in the
terminal stages, treatment includes morphine, diazepam,
midazolam, and chlorpromazine (Miller et al., 1999). The
treatment for anxiety can also treat other issues in the
terminal patient, such as pain and hunger (Howard and
Orrell, 2002).
Psychological concerns
Depression, anxiety, and pseudobulbar affects are common
in the ALS patient. Treatment includes counseling, relaxa-
tion techniques, ALS symptom management, and medica-
tion for depression and anxiety. Pseudobulbar affects
improve with the medications used to treat depression.
Medications used for psychological symptoms include
serotonin reuptake inhibitors such as citalopram, fluoxe-
tine, or paroxetine for depression; benzodiazepines and
amitriptyline for anxiety; and a combination of depression
and anxiety medication for the pseudobulbar symptoms.
Several studies have examined the hormones that are
associated with stress, anxiety, depression and pain. The
studies have shown that massage can reduce these
hormones in the blood and urine as well as the patients
reporting a better mood, reduced anxiety and pain (Field
et al., 2005, 2007; Lund et al., 2006). Studies on elderly
institutionalize patients found that low back massage
would not have statistical significance but have clinical
signification on depression and anxiety (Fraser, 1993; Moyer
et al., 2004).
Conclusion
ALS is a fatal, progressive neurological disease that
threatens the autonomy of the patient. As the disease
progresses, the patients need increasing support from their
families and health care providers. The goal of the health
care team is to manage the symptoms of the ALS patient.
Many studies support an interdisciplinary approach to the
care of the ALS patient to improve their quality of life
(Bruijn and Cudkowicz, 2006; Cannaets et al., 2004; Francis
et al., 1999; Howard and Orrell, 2002; Jenkinson et al.,
1999). The goal of a multidisciplinary team is to educate
the patient and family, provide psychological support, help
334
with the ever-changing requirements for rehabilitation and
appropriate equipment, and provide access to community
resources. Pautex et al. (2005) went so far as to recom-
mend an interdisciplinary team even in hospitals that do
not have an ALS clinic.
Treatment with speech therapists, physical therapists,
occupational therapists, massage therapists, and mental
health care providers can be helpful in improving the
quality of life for the ALS patient (Francis et al., 1999;
Howard and Orrell, 2002). While the benefits of massage
have been shown for all people (Field et al., 2007, 2005;
Lund et al., 2006). Medical interventions to the body need
to be weighted on the benefits to the patient against the
risk to the patient. While treating ALS patients, the benefit
needs to be assessed by the patient and the patient’s
treatment. Not all healthcare professionals agree that
massage is useful for the ALS patient (Sancho and Boisson,
2006). It is also important to note that in a number of
studies that look at the amount of pressure needed for
massage to be effective and have found that moderate
pressure more effective than any other pressure (Field
et al., 2007, 2006, 2004). Healthcare professional can also
help the family with education. An interdisciplinary palli-
ative care unit that includes a massage therapist to support
the whole patient and, indirectly, supports the family,
improving the quality of life for both (Tables 1 and 2).
Acknowledgments
The author thanks Susan Keleher, Instructor at the Univer-
sity of Maryland and Sue Bennett for their critical review of
the manuscript.
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