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concerns energy


safety, and


feeding tubes
sources of

Why is nutrition important?

You have probably had many people tell

you it is important to eat well. What are

the benefits when people with ALS eat

ALS patients with good eating

habits have fewer infections.

Providing your body with enough

calories ensures that your energy
levels and mood are at their best.

Eating enough energy and

protein ensures that you will
not have unnecessary muscle
wasting. Muscle wasting
occurs in ALS but inadequate
nutrition increases muscle
wasting as your body breaks
down additional muscle tissue
to provide your body with
energy it needs.
Providing your body with
enough fluids helps avoid
urinary tract complications,
constipation, and provides
lubrication for the mouth.


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good food
good life
Swallowing problems in ALS affect good nutrition
Patients with ALS are faced with

tiring to chew and swallow. As a

Reduce these risks by:

special challenges to good nutrition

result, food or liquid may:

-modifying the consistencies of


due to the difficulties in chewing and

swallowing which occur. In order to

-leak between the lips

swallow safely and efficiently, its

-pocket in the cheeks

essential to have good strength and

-go up into the nose

control of the muscles in the lips,

-spill down the throat prematurely

cheeks, tongue, palate, throat, and

larynx. However, ALS can affect all
these muscle making it difficult and

-changing the patterns of eating

-using a feeding tube to supplement
eating by mouth

-spill into the lungs

-get stuck in the throat

Problems of chewing and

diminishes and they lose interest in

swallowing specific to each

food. For these patients, it becomes a

individual can be assessed by

particular challenge to eat enough to

a Speech Pathologist. Many

maintain adequate nutrition and

patients find that when

hydration. To ensure adequate

-choose flavors you enjoy

swallowing becomes more


-choose simple consistencies

difficult and it takes them

-eat foods/liquids high in calories

-eat frequent small meals/snacks
-dont rely on appetite alone

-take high-calorie supplements

longer to eat, their appetite

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Specific nutritional
Energy or calories: Calories are
the measure of food energy that
fuels the body. Even when activity
level is low, ALS patients usually

-add butter or margarine to foods

-put mayonnaise on salads or

need at least of the calories of

-use peanut butter on fruit and

healthy individuals. Men with ALS


need 1700-2300 calories while

women with ALS require 1200-1800

-spread honey on toast

calories. To add calories to your

-sour cream or yogurt can be used

diet, consider the following:

on vegetables or in gravies

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Protein: Protein is important
for building and repairing all
body tissues. The best sources
of protein include dairy
products, meat, fish, poultry,
eggs, and dried beans and
peas. Protein is used best by
our bodies when it is provided
in small quantities. To add
protein to your diet, consider
the following:
-add milk powder instead of
regular milk in recipes
-use fortified milk for cooking
and drinking
-use milk or half-and-half
instead of water when making
soups or cereals
-add diced meat to soups and
-add cheese to sauces and
-put cheese, butter, or peanut
butter on bread
-choose desserts that contain
eggs (angel food cake, egg
custard, bread pudding)
-add peanut butter to sauces,
on crackers, or on vegetables

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Hydration: Two-thirds of
the human body is made up
of fluids. Therefore, it is
essential to consume
enough fluids daily to
maintain a natural moisture
balance in your body. For
most people, this means
drinking 8-10 glasses of
fluids a day. People who
consume a lot of caffeine
may need to take in extra
fluid since caffeine causes
the body to lose fluid. One
common problem
associated with insufficient
fluid intake is constipation. If
you are having difficulty
coughing up or swallowing
secretions and you are
drinking plenty of liquids,
you may want to modify the
kinds of liquids you are
drinking. Milk products may
thicken secretions and
should be minimized.
Excessive caffeine can
cause dry mouth and should
be avoided. To increase
fluid intake, consider the
-fluid doesnt just mean
water (dont forget about
milk, juices, sauces, and
-if thin liquids are difficult to
swallow, thicken them
naturally with fruit

If you are having difficulties eating and swallowing, seek an

evaluation with a Speech Pathologist. If you have specific
concerns about your nutrition needs, seeks consultation
with a Registered Dietitian.

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Safety: In addition to getting

enough food and liquid,
eating safely becomes a
concern for ALS patients
with swallowing problems.
This means protecting
against choking and
aspirating when eating and
drinking. To protect your
airway and lungs, consider
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the following:

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-eat sitting up straight

-pace yourself when you eat
-make sure your throat is
-choose easy-to-manage
-limit distractions
- sodales.
-dont eat when overly tired
Constipation: Constipation
can be a problem for people
with ALS. Part of the
problem is due to the
disease itself; however,
eating a diet of soft and
pureed food contributes to
the problem. To increase
the fiber or bulk in your
diet, consider the following:
-add a couple tablespoons
of bran to foods like baked
goods and casseroles
-blenderize fruits and
-take supplemental
-use stool softeners or
laxatives as needed


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What about a feeding tube?

Feeding tubes are
an option you can
choose to assist in
getting adequate
nutrition and
hydration. The
most frequent
procedure used for
patients with ALS is
the percutaneous
gastrostomy or, for
short, the PEG. A
tube is placed
through the skin
and into the
stomach. This is
done under local
anesthesia, but it
does require a
short hospital stay.
The tube is left in
place and food
supplements can
be put directly into
the stomach
through the tube.

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If you have a tube in

place, you have two
options: you can
continue eating and
drinking by mouth,
using the tube to
supplement your diet
and ensure adequate
nutrition. If you no
longer can or want to
eat by mouth, you can
take all of you nutrition
by the tube.
Patients often report
that the PEG feedings
require less time and
energy than traditional
eating, allowing them to
spend more time on
other activities during
their day.
If you have further
questions or are
considering this
procedure, talk with
your physician to get
more detailed

Sometimes eating meals
just isnt enough. Weight
loss may continue at an
undesirable rate, or the
time required to eat meals
may increase until it takes
up most of the day. At this
point, it might be wise to
consider using
supplemental forms of
nutrition. These are
specially created formulas
which concentrate calories,
protein, and most vitamins
into a relatively small
volume. When swallowing
is still intact, oral
supplements are
recommended. As safety
becomes more of an issue,
supplements may be taken
primarily by tube. Those
supplements designed as
primarily for oral use taste
better. Those designated
for tube feeding use may
also be used orally
especially for patients
desiring a product, which
is less sweet.