It’s never too early to focus on your diet after an ALS diagnosis. It’s important to note that it takes more energy to move and breathe with ALS, so you’re burning more calories at rest than people who do not have the disease.
Nutrition and hydration are important for people with ALS, but chewing and swallowing can become more difficult over time. And once weight is lost, it can be hard to gain it back – which eventually leads to muscle loss and loss of independence.
Fortunately, there are a few strategies you can use to help keep up your weight with ALS.
1. Get more calories, not more food
The key is to increase the number of calories you’re taking in – without necessarily increasing the amount of food you’re eating.
Avoid diet or reduced-fat versions of the foods you enjoy. Go with the original or full-fat versions, because those will have more calories.
Drizzling olive oil over vegetables, meat, or soup can add taste and calories at the same time. You can also add butter, honey, or cream sauces to many foods you like.
Look for foods with healthy fats like nut butters and avocados, or high-protein foods like cheese, eggs, and powdered milk. These will help you get lots of calories without much volume. .
2. Drinking thick liquids can help avoid dehydration
If you have ALS, a good goal is to drink six to ten 8-ounce cups of liquid per day.
Remember that alcohol and caffeinated beverages like coffee or soda are dehydrating. They can still be okay to drink as long as you’re getting enough fluids from another source. Sports drinks with electrolytes can help.
Drinking ‘thin’ liquids like water may cause you to cough when you have ALS. Thicker liquids like milkshakes, pureed soups, or fruit juice with pulp can be easier to drink.
You can also use thickening powders or gels to thicken liquids without changing the taste. In a pinch, adding baby rice cereal or mashed potato flakes can help thicken liquids – and help by adding more calories, too.
3. Don’t skip dessert
These treats can play an important role in your nutrition and hydration.
Ice cream tastes great, melts easily in the mouth, and goes down easily, carrying plenty of calories along with it. Sherbet is another great option.
Jello is a favorite of people living with ALS. It’s easy to eat and will help increase your fluid intake.
If you’re noticing difficulty swallowing or you’re coughing more, reach out to a speech-language pathologist for ways to make it easier.
4. Aids for eating and drinking
Soft foods don’t have to be difficult to prepare. Using broth can help moisten meats and vegetables, making them softer.
Cut food into small pieces that are 1/2 inch or smaller because they are easier to swallow. It’s a good idea to cook vegetables until they are soft enough to mash with a fork.
There are a wide range of tools that can help you eat with ALS. Specialized cups, straws, and offset spoons and forks have been designed with people living with ALS in mind. Your ALS care team can provide suggestions.
You can also use foam tubing or washcloths on lightweight utensils for decreased grip, and non-slip discs to help stabilize plates and cups on the table.
5. A feeding tube can help relieve your stress
If you can’t maintain weight by eating, or swallowing has simply become too exhausting, a feeding tube 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.
While you are in the hospital, your ALS care team will show you how to take care of your feeding tube. Feeding tubes should be exchanged every 6 to 9 months, but each replacement only requires a short hospital visit.
Liquid nutrition is generally put into a special bag and administered by a pump or allowed to drip into the tube by gravity. Commercial formulas are usually recommended over homemade mixes.
Bottom Line
With care and planning, it’s possible to keep up your weight and maintain your diet that will improve your quality of life and help you live longer with ALS.
Your ALS care team can provide valuable advice on how to meet your personal nutritional needs. It’s also a good idea to talk to a registered dietitian, or if you’re having difficulty swallowing, reach out to your speech-language pathologist.
You can find much more in the Les Turner ALS Foundation’s complete guide to ALS & Nutrition, as well as the My ALS Decision Tool™ on nutrition support.
How We Developed This Article
ALS resources from the Les Turner ALS Foundation are written and reviewed by clinicians, medical professionals, ALS support services coordinators, caregivers, and people living with ALS.
The information on this page 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.
These resources are made possible by a generous donation from the Gilbert & Jacqueline Fern Foundation and other donors to the Les Turner ALS Foundation.
