ALS & Nutrition

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Contents

How ALS affects nutrition
Maintain weight
Calories
Eating
Drinking and dehydration
Aids for eating and drinking
Choking
Feeding tubes
Learn more
Download guide (PDF)
Watch webinar on how to optimize nutrition
Help me make decisions
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Disclaimer Statement: The information in this guide is not medical advice. Talk to your ALS care team before making any decisions about your health or treatment. Together, you and your care team can find a treatment plan that works for you.

Last Reviewed: October 15, 2021

ALS & Nutrition

How ALS affects nutrition

Good nutrition and hydration are very important for people living with ALS.

People living with ALS burn more calories because of the increased energy used in breathing, moving and muscle twitching. You may have challenges with low energy, maintaining weight and decreasing muscle mass. Proactively addressing your challenges can result in greater energy, strength and independence.

If you are having trouble eating, drinking, or taking medicine on your own, you may not be able to get all of the nutrition your body needs. This can lead to weight loss, infections, and other health problems down the road. This guide walks you and/or your caregivers through proactive strategies to maintain weight.

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Early, nutritional management can improve your quality of life and help you live longer with ALS.
Your ALS Care Team can customize the best way for you to meet your nutritional and hydration needs based on your age, sex, weight and ALS symptoms.

Maintain weight

You may benefit from a proactive nutritional approach to any of these symptoms:
Difficulty Chewing
Having difficulty chewing and swallowing
(coughing or choking)
Losing Weight
Losing weight
without meaning to despite eating a “normal” amount of food
Eating Less
Eating less food
than you usually would or having a poor appetite
Taking Longer
Taking longer
than expected to eat a meal because of arm or hand weakness or chewing and swallowing problems
dehydration
Having problems from not getting enough water (or dehydration)
This can include constipation or thick secretion
Rollator walker
Together, you and your ALS care team can find nutritional support that works for you.
Hoyer lift

Even if you’re not having these symptoms, it’s never too early to be proactive with ensuring a healthy diet and adequate hydration.

If you ignore weight loss it may be hard to gain weight back. Severe weight loss contributes to muscle loss, decrease in independence and energy.

Calories

You are burning more calories at rest when compared to people who are not living with ALS.

This makes maintaining weight more difficult, so people with ALS need to increase their calories to maintain weight. The challenge is to increase the number of calories without significantly increasing the amount of food.

A few ways to increase calories would be:

Small Meal
Eat small frequent meals during the day every 2 to 3 hours.
Healthy Fats
Healthy fats have a lot of calories without much volume. Foods like nuts, nut butters, seeds, avocados, olives, and oils (olive or canola) are high in healthy calories.
Full-fat Foods
Avoid diet foods and choose the full-fat version for more calories.
Cheese
Add high protein foods such as cheese, eggs or powdered milk to casseroles and soups to increase calories and protein.
Sauces
Add butter, honey, gravy, cream sauces and mayonnaise to foods.
Nutritional Supplements
Look for nutritional supplements with the word “plus”, rather than the “high-protein” varieties. These supplements contain more calories and protein.
Olive Oil
Drizzle olive oil over foods such as vegetables, meat and soup.
Talking with a registered dietitian or nutrition specialist can help guide you in selecting the right foods and supplements.

Eating

Chewing and swallowing difficulties (dysphagia) may make mealtimes more challenging or tiring for you. Concentrating and eating more slowly may cause a sense of isolation due to others having already finished eating. As a result, you may not finish your meal leading to a decrease in caloric intake. Some people listen to the radio or
podcasts to lessen their isolation.

Dietary Supplements 

ALSUntangled reviews alternative and off label  treatments, with the goal of helping people with ALS make more informed decisions about them.

alsuntangled.com

Signs of swallowing difficulty include:
Choking or coughing
Choking or coughing while eating
Increased saliva
Increased saliva or excessive drooling
Stuck in mouth
Sensation of food getting stuck in your mouth, throat, or chest
Need more time
Needing more time to finish a meal
Frustration
Frustration during meals
Avoid certain foods
Avoiding certain foods
Loss of appetite
Loss of appetite
Increased nasal secretions
Increased nasal secretions
Try to determine what types of foods and liquids are the easiest to tolerate. You might want to consider a soft diet of foods that are easy to chew and swallow.
How to prepare soft foods?
Cut food
Cut food into small pieces that are 1/2 inch or smaller because they are easier to swallow.
Broth
Use chicken broth, beef broth, vegetable broth, gravy or sauces to cook or moisten meats and vegetables.
Cook vegetables
Cook vegetables until they are soft enough to mash with a fork.
Food processor
Use a food processor to grind or purée foods to make them easier to chew and swallow.

Drinking and dehydration

Adequate fluid intake is essential for avoiding health problems.
What are some of the signs of dehydration?
Dark colored urine
Dark colored urine
Dry itchy skin
Dry itchy skin
Confusion
Confusion
Dizziness
Dizziness or Lightheadedness
Headaches
Headaches
Flushing / Fever
Flushing/Fever
Increased fatigue
Increased fatigue
Decreased urine output
Decreased urine output
Drinking thin liquids might be difficult causing you not to drink enough fluids. If thin liquids like water cause coughing, drink thicker liquids such as:
Milkshakes
Milkshakes, smoothies, or drinkable yogurt
Puréed soups
Puréed soups
Carbonated fluids
Carbonated fluids
Thicker fruit juice with pulp
Thicker fruit juice with pulp
Thickening powders or gels
Use thickening powders or gels, such as Resource Thicken Up Clear, Thick-It, or Simply Thick, to thicken fluids without altering the taste
Other thickening options
Other thickening options for thin liquids, which also help increase calorie intake, include: baby rice cereal, mashed potato flakes, puréed baby foods
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You might also be dehydrated because you want to avoid increased trips to the restroom, which can require assistance. Talk with your ALS care team about different bathroom aids and strategies.
Fluids
Ensure proper fluid intake with a goal of six to ten 8-ounce cups of liquid a day.
Avoid beverages
Alcohol and caffeinated beverages can be dehydrating (although can be consumed with adequate hydration).
Sports drink
Consider the use of a sports drink with electrolytes or other flavored beverages to increase fluid intake.
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Certain foods such as Jello, sherbet, and fruit will also help to increase fluid intake

Aids for eating and drinking

Built-up handles

Built-up handles
Use foam tubing or wash-cloths on lightweight eating utensils for decreased grip

Universal cuff
Universal cuff
Large handled cup for hot and cold liquids

Large handled cup for hot and cold liquids
This allows four fingers to fit through the handle to increase stability.

Offset spoon or fork
Offset spoon or fork that can be angled right or left
Clear plastic, clip-on plate-guard
Clear plastic, clip-on plate-guard
A non-slip disc; or Dycem,

A non-slip disc; or Dycem,
a gel pad used to stabilize plates and cups on the table

Long rigid or flexible straws
Long rigid or flexible straws
Straw holder clip
Straw holder clip
Small pliers

Small pliers
to open water bottles and jar openers

Sports drink container with a straw
Sports drink container with a straw
Nosey cup

Nosey cup
The special cut out provides space for the nose, allowing you to tilt the cup for drinking without bending the neck or tilting the head

Flexi-Mug
Flexi-Mug and cupholder

Choking

As face, throat and jaw muscles weaken, the risk of food and/or liquid going down the wrong way increases.
You can reduce choking episodes in several ways:
Limit talking
Limit talking and other distractions while eating.
Limit foods
Limit foods with different textures like chicken noodle soup or dry cereal with milk.
Serve smaller
Serve smaller, but more frequent meals, avoiding dry, crumbly or large chunky foods.
Limit foods
Take smaller bites of food and little sips of liquid. Swallow several times to clear each bite.
Limit foods
Keep mucus and saliva thin by ensuring adequate fluid intake. (Try papaya, pineapple or purple grape juice. These juices each contain enzymes which helps to breakdown protein in mucus. You can also add lemon juice to water.) 
Ask to talk with a speech pathologist
Ask to talk with a speech pathologist or swallowing specialist for specific strategies that might make swallowing easier for you.
Consider getting a feeding tube
Consider getting a feeding tube to reduce your risk of choking.
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Food going down “the wrong way” means breathing food or liquid into the lungs (aspiration) instead of swallowing down the esophagus into the stomach.

Aspiration can cause respiratory infections or a frightening choking spell and is a leading cause of pneumonia, a potential life-threatening event for people living with ALS.

Feeding tubes

How does a feeding tube work?

If you cannot maintain weight by eating, or swallowing becomes too exhausting, time-consuming or dangerous, a feeding tube may be considered. A feeding tube is a type of medical device that can help you get the nutrition you need. You will need to have a procedure for a doctor to place the tube inside your stomach. The other end will be on the outside of your skin but is easy to cover up under clothes.

Feeding tubes can lessen the stress you feel when you are unable to eat enough to maintain your weight. It may be a much better way to maintain nutrition and hydration than trying to eat or drink everything by mouth.

A feeding tube allows you to eat what you are able by mouth and supplement with adequate calories through the tube. Vitamins and medications can also be easily given through the tube when crushed.

How does a feeding tube work?

Getting a feeding tube early can improve your quality of life and help you live longer.

Feeding Tube
Considering a
feeding tube

ALS is a progressive disease. This means your ALS symptoms will get worse over time.

If you choose not to use a feeding tube, it may become harder for you to swallow safely and you may be at an increased risk of choking.

Using a feeding tube can help you:
Choking
Lower your risk of choking or pneumonia (a serious type of lung infection)
Energy
Have more energy throughout the day
Participate
Participate in activities you enjoy, like spending time with family and friends
Worry less
Worry less about whether you’re eating and drinking enough
Maintain your strength
Maintain your strength and keep you from losing too much weight
Getting the adequate
Make sure you’re getting the adequate your body needs
Feeding icon

Eating and drinking with a feeding tube

Some people can eat and drink in addition to using a feeding tube. Other people get all their nutrition through the feeding tube. This may also change over time as your ALS symptoms progress.

How will the doctor insert my feeding tube?

You will need to have a procedure to get a feeding tube. This procedure will make a few small cuts to place the feeding tube inside your stomach.

There are two different types of procedures. The difference between them is how the doctor looks inside your stomach:

Percutaneous Radiological Insertion of Gastrostomy (RIG):
A special doctor called a radiologist will take an X-ray of your stomach. They carefully guide instruments through tiny incisions in the skin to make an opening in the stomach. You may have a Nasogastric Tube placed temporarily the day before the procedures. This is a flexible tube of rubber or plastic that is passed through the nose, down through the esophagus, and into the stomach to ensure accurate feeding tube placement.

Most ALS doctors recommend the RIG procedure. Talk with your ALS care team about which type of procedure is best for you. There are risks associated with the feeding tube procedure—like infections, breathing problems and reactions to medicines you get during surgery.

Your ALS care team can go over all the risks with you and provide you with more details about the procedure.

Percutaneous Endoscopic Gastrostomy (PEG):
A gastroenterologist, or a doctor who specializes in the digestive tract, will use a camera called an endoscope to take pictures of your stomach. The doctor will place the endoscope down your throat so they can see inside your stomach.

My ALS Decision Tool™

You can use My ALS Decision Tool™ to learn more about using a feeding tube. Then, talk with your ALS care team. Together, you and your care team can find a treatment plan that works for you.

ALSDecisions.org/Nutrition

Caring for your feeding tube
Flush with water
Flush with room temperature water before and after putting anything through the tube. Gently squeeze the tube as the water is running through to dislodge anything sticking to the inside.
Flush the tube
Flush the tube before and after giving medications.
Pre-mixed liquid nutrition
Feedings through the tube are generally pre-mixed liquid nutrition. Commercial liquid nutrition is often recommended over homemade liquid nutrition. Commercial formulas are less time-consuming for caregivers.
Special feeding bag
The liquid nutrition is generally put into a special feeding bag and administered by a feeding pump or allowed to drip into the tube by gravity.
Flush with water
Following each feeding, the tube is flushed with water to clear it.
Schedule
Most often, several feedings are given through the course of the day, just as with regular meals. Some patients receive tube feedings overnight and take only liquids and medications during the day. Work with your ALS care team to discuss your needs and preferences to determine the proper feeding schedule.

How will the doctor insert my feeding tube?

While you are in the hospital after the procedure, your ALS care team and hospital staff will show you how to take care of your feeding tube. Your ALS care team will give you instructions to follow when you go home.

For a few weeks after the procedure, the feeding tube requires special attention to prevent infection. After the site is healed, daily cleansing with soap and water is all that is necessary.

It is recommended that the feeding tube is exchanged every 6-9 months.

Don’t worry—after the first procedure to place the tube in your stomach, it’s much easier to replace with a new one. You will not need to stay overnight in the hospital.

Learn more

The Les Turner ALS Foundation exists to guide you to answers, support you and your loved ones and advance scientific research. To learn more about living with ALS visit, lesturnerals.org/resources.
My ALS Decision Tool™
My ALS Decision Tool™
If you have ALS, you will need to make some important decisions about your health care. As your disease progresses, your ALS care team may recommend different care options. You can use this tool to learn about some common ALS treatments, answer a few questions to help you think through what is most important to you and get ready to talk with your ALS care team about your options. To learn more, visit: alsdecisions.org.
ALS Learning Series
ALS Learning Series
Our online ALS Learning Series aims to empower the ALS community through the latest information and insights. Educational webinars and interactive Q&A’s covering a diverse array of topics, from nutrition to respiratory care, are offered monthly featuring members of the Foundation’s Support Services team, our Lois Insolia ALS Clinic at Northwestern Medicine and other national ALS experts. To learn more about ALS care and research, visit: alslearningseries.org.
My ALS Communication Passport to Quality Care
My ALS Communication Passport to Quality Care
My ALS Communication Passport to Quality Care was created to make your life easier. You will be able to share health information and care preferences with caregivers. You have a lot of information to keep track of, and this tool will help you do that. To find out more, visit: lesturnerals.org/passport.
Support Groups
Support Groups
We facilitate support groups to provide people living with ALS, their caregivers and family the opportunity to share their experiences, give encouragement and help each other navigate their journey with ALS. To find out more, visit: lesturnerals.org/support-groups.

Theses resources are made possible by a generous donation from the Gilbert & Jacqueline Fern Foundation and other donors to the Foundation.

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