Occupational Therapy for ALS Patients

Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig’s disease, is a
progressive neurodegenerative disease that destroys motor neurons, which are among the
largest of all nerve cells in the brain and spinal cord.  Motor neurons are responsible for
sending messages to muscles throughout the body.
When the motor neurons can no longer send impulses to the muscles due to ALS, the muscles
begin to waste away (atrophy), causing increased muscle weakness. Motor neuron (or nerve
cell) death makes it impossible for the brain to control muscles or signal them to move.
Eventually, most muscles are affected, including those of the legs and feet, arms and hands,
and those that control swallowing and breathing1.

Background & Etiology2

ALS can be classified as either sporadic or familial.

ALS without a clear cause is referred to as sporadic. At this point, researchers think it could
be a combination of environmental factors, genetic traits, exposures and lifestyle that cause
the disease.
This means there is a connection, but it is not a direct cause. For instance, some
studies suggest that military veterans are about 1.5 to 2 times more likely to develop ALS
due to toxin exposure and extreme physical exertion.

1
http://www.alsfoundation.org/learn/
2
Adapted from https://health.usnews.com/conditions/brain-disease/als
 Amyotrophic lateral sclerosis3

About 5% to 10% of ALS cases are caused by gene mutations. This is known as a
familial cause. Some, but not all of the genes associated with ALS have been identified.
There are two known main risk factors for ALS:
 Age. The average age ALS is typically diagnosed is at age 60. Those with ALS in the
family are typically diagnosed at age 50. However, ALS can strike at any age.
 Gender. Men are 1.56 times more likely to get ALS than women, according to the
ALS Association.
Some other factors that scientists think might contribute to ALS include:
 free radical damage;
 an immune response that targets motor neurons;
 imbalances in the chemical messenger glutamate;
 a buildup of abnormal proteins inside nerve cells.

Signs and symptoms4

T he symptoms of ALS can vary widely. One person initially may have trouble grasping a
pen and holding a coffee cup but have no trouble speaking while another person may have
trouble speaking but can still easily hold a pen or cup.

3
Amyotrophic lateral sclerosis. Lou Gehrig's disease 1939 Jean-Martin Charcot Amyotrophic lateral sclerosis
(ALS) (Rosen DR et al. Nature 1993) 1869. retrieved from https://slideplayer.com/slide/8569304/
4
Adated from https://health.usnews.com/conditions/brain-disease/als
Symptoms may start differently in each person, but they tend to be fast moving and progress
until they are severe – for example, having trouble breathing and requiring a respirator.
Here are some of the common symptoms associated with ALS:
 Muscle twitches (also called fasciculations) and spasms. This symptom is common in
the early stages of ALS.
 Tripping or stumbling. ALS damages the corticospinal tract and causes spastic limb
weakness.
 Weak arm or leg muscles. The degeneration can cause limp muscles, or flaccid
weakness, muscle wasting. This usually starts in one arm or leg and then spreads to
other body parts. As muscles are less used, joints become rigid, painful and sometimes
deformed.
 Hand weakness. Tasks like using buttons or zippers, handling coins, turning a key in
a lock or writing become difficult.
 Leg muscle weakness. Walking, climbing stairs and difficulty standing up are
common which can increase the risk for falling.
 Emotional lability, which is characterized by excessive emotional reaction such as
inappropriate and uncontrollable laughing or crying. This is also called pseudobulbar
affect.
 Impaired decision making and other declining cognitive skills. This occurs in as
many as 15% of people with ALS.
 Trouble speaking. This type of impairment may cause excessive drooling, slurred
speech or hoarseness and is due to a loss of tongue muscle contour, or tongue atrophy.
It may have psychological consequences like anxiety or depression.
 Trouble swallowing. Swallowing difficulties may lead to malnutrition and
constipation.
 Trouble breathing. This may lead to fatigue, headaches and a greater chance of
getting pneumonia.
Although ALS can affect many parts of the body, it doesn't directly affect involuntary muscle
functions such as the heart beating, the gastrointestinal tract digesting food, bowel and bladder
functions, sexual functions.
Additionally, senses like vision, hearing and touch aren't affected.
The Role of Occupational Therapy for ALS Patients5
ALS is a progressive disease that gradually destroys neurons in the body. In the early stages
of the disease, this might mean struggling with something as simple as trying to button up a
shirt or put on a pair of shoes. Later on, as the condition worsens, there may be issues
surrounding nutrition and feeding as well as breathing.
Working with an occupational therapist, ALS patients may be able to improve their condition
through good nutrition and exercise choices, for example, or utilize specialist assistive
technology that helps maintain independence.
The role of the occupational therapist will change as the condition develops and more
assistive measures need to be considered.

Assessment
When considering the rehabilitation of the clients with ALS, there are 6 recognised stages of
the disease that should be considered. The table below outlines these stages, along with the
appropriate activity level and equipment according to the patient’s level of function:

Stage Characteristic Activities to Maintain Equipment

Clinical Features
1 Ambulatory; no
problems with ADL,
mild weakness
2 Ambulatory; moderate
weakness in certain
muscles
3 Ambulatory; severe
weakness in certain
muscles
4 Wheelchair-confined;
almost independent,
severe leg weakness
5 Wheelchair confined;
dependent; pronounced
leg weakness, severe
arm weakness
6 Bedridden; no ADL,
maximum assistance
required
Motor Function
Normal activities; active range- None
of-motion (ROM) exercise
Modification in living; active, Assistive Devices
assisted ROM exercise
Active, assisted, passive ROM Assistive devices,
exercise; joint pain management adaptive devices,
home equipment
Passive ROM exercise, modest Assistive devices,
exercise in uninvolved muscles adaptive devices,
wheelchair, home
equipment
Passive ROM exercise; pain Adaptive devices,
management home equipment,
wheelchair
Passive ROM exercise; pain Adaptive devices,
management; prevention of Home equipment
decubitus ulcers and venous
thrombosis

5
https://alstreatment.com/occupational-therapy/
The progressive and varied nature of ALS necessitates that occupational therapy (OT)
interventions be client-centred, focusing on ways to adapt to the disability, modify the
environment, and prevent secondary complications.

Potential OT goals for ALS clients during early stages of the disease include:

- Optimizing strength and range of motion at home

- Decreasing pain and fatigue in neck and extremities with splints and orthotics
- Implementing joint protection and pain management strategies

During later stages of the disease, potential OT goals for ALS clients include:

- Optimizing safety
- Employing environmental modification
- Assessing positioning and mantaining skin integrity.

Benefits of Occupational Therapy for ALS Patients

There are numerous benefits in setting occupational therapy goals for ALS patients from the
outset. Whilst it is undoubtedly traumatic to be diagnosed with this disease, taking control and
managing what the future may hold can help empower the individual and give them a more
positive outlook. Most people with a serious health condition benefit from being able to stay
in their own home. The fact that an occupational therapist works with the individual to assist
in daily living and independence means this is possible, even as this disease progresses.
They can help in a number of ways:
 Aids and Adaptations:
Kitchen aids can help with tasks such as opening jars
One of the first things that an occupational therapist will help with is determining the right
assistive techniques for the individual. There are many such devices that assist people with
getting dressed, pulling on socks, showering and the like.
This area also includes making adjustments to the home such as improving access if a
wheelchair is to be used.
 Exercise and Diet:
It shouldn’t be underestimated how diet choices and exercise can help with ALS, particularly
in the initial stages. This intervention will concentrate on muscles, for example, that are still
not affected by the disease, ensuring they are kept in good condition for as long as possible as
a way of improving mobility.
 Educating Caregivers:
As the disease progresses, family members and other caregivers may well be used to support
the individual with ALS. The occupational therapist can act as a link providing insight and
education for these helpers.

Examples of Occupational Therapy Activities for ALS Patients

ALS occupational therapy treatment guidelines cover almost every aspect of daily living and
there’s a solution for practically everything:
 Standing in front of a sink and simply having a wash can be demanding for those with
ALS. A simple occupational therapy solution might be to sit on a special chair or have a lower
sink where a wheelchair can be used.
 Shaving may be a problem because of weak hands and arms. Switching to an electric
razor might be the solution.
 In the later stages of ALS, trouble with getting the attention of a caregiver may be
overcome by introducing an intercom service or using digital assistive technology such as a
mobile app.
 Getting into or out of bed can be challenging if there is no one around to help but there
are a range of lifts and leg supports that can be utilized.
 Eating might be difficult with loss of motility in the hands so utensils with thick,
bendy shafts may make a difference.
Increased Independence
There is no doubt that being diagnosed with ALS comes with significant challenges.
Occupational therapy, however, will help individuals not only come to terms with their
condition but manage themselves better for a more independent life.

I. Answer the following questions:

1. What is Amyotrophic Lateral Sclerosis ?

2. What are sporadic ALS/Familial ALS?
3. How many types of causes generate this disease?
4. What are the symptoms of ALS?
5. What is the OTs general goals with ALS patients?
6. What are the stages that are to be reognized in the assessement of ALS patients?
7. What are OT goals for ALS clients during early stages?
8. What are OT goals for ALS clients during later stages?
9. Give examples of occupational therapy benefits for ALS patients.
10. Give examples of occupational therapy activities for ALS patients.

II. Two OTs are talking about the difficulties of attending ALS patients of
different stages, gender and age (one man and one woman). Write a dialogue
on this topic empasizing the right choice for their recovery (10-12 lines).
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III. Pay attention to the following fragment:

Individuals diagnosed with amyotrophic lateral sclerosis (ALS) will face many challenges as
the disease progresses. ALS affects all nerves in the body which leads to a gradual and
destructive loss of muscle strength. This means that those affected can lose the ability to
walk and have difficulty with many daily tasks that most of us take for granted.
There are numerous ways in which support can be provided for people who have been
diagnosed with ALS. This includes medication to help slow down the progression of the
disease and supportive therapies, such as physiotherapy, which can allow the diagnosed
individual to retain their strength and mobility for as long as possible.
Following an ALS diagnosis, working with an occupational therapist can also help the
individual to find solutions to daily living problems that might arise as mobility becomes
increasingly limited.
One type of support that has proved beneficial for individuals diagnosed with ALS is the use
of service dogs.
Here we take a look at the potential an intelligent four-legged friend can offer, how they can
help with daily living and also the many things to consider before opting for a service dog.
(extracted from https://alstreatment.com/service-dogs/)

Write down at least 5 examples of activities that can be performed by dogs in order to assist
ALS Patients:
1............................
2........................
3....................
4....................
5.......................

IV. Write the appropriate form, gerund or infinitive, of the verbs in brackets:
1. She’s getting upset; she needs (conceive) _____________ another stub for the
volume.
2. The writer discussed about (print) ___________________ his life-work in a new
printing works.
3. Sometimes authors avoid (accept) _____________________ nicknames.
4. Most authors prefer (take a chance) _________________ with their first book.
5. Did the editor agree (change) _____________________ your name for the sake of the
image?
6. The publisher advised us (not, edit) __________________ the book with a subtitle.
7. Does the printing worker expect (receive) ____________ some extra money for his
work?
8. The reader prefers (read) _____________________ a magazine rather than take a
walk
9. She doesn’t mind (wait) _____________________ for the books collector.
10. Myths and legends started (collapse) ___________________ in modern times but
people still like (read) ____________________ about them.

V. Use the following words in your own sentences:

genetic traits ……………………………………….
to waste away …………………………………………..
muscle twitches ..........................................
assistive technology ........................................
fatigue ......................................
to splint .................................
orthotics ..................................
from the outset ........................
to adjust ………………………………..
insight …………………………………..