ALS Therapy Development Institute

Eating and ALS

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ALS professionals can teach you how to modify your food and eat safely, with or without caregiver assistance.

As ALS progresses, you may notice changes in your ability to chew, swallow, or feed yourself. If this becomes a concern, reach out to your ALS clinic or medical team for guidance. Your speech language pathologist (SLP), occupational therapist (OT), and dietitian can help you find ways to eat safely and more independently while maintaining your weight.

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ALS Food Safety and Modification

The type of food and liquid you consume and how it is prepared will play a big role in your ability to stay safe while eating and drinking.

Finding out what works for you at each stage of the disease may be a process of trial and error. Whenever something changes or feels unsafe, reach back out to your SLP, OT, and dietitian to restrategize.

If you find yourself choking on thin liquids like water, tucking your chin while taking one sip at a time may solve the problem.

If you are still choking, you can try thicker liquids like smoothies and nectars. You can also add thickeners to thin liquids like water and juice to add more density so they don't go down the wrong pipe.

If you are struggling to drink enough water and stay hydrated, ask your medical team for suggestions.

If chewing is becoming difficult, try eating softer food and cutting it up into smaller pieces. You can also purchase a blender like the Magic Bullet that can chop up your food instead of liquefying it.

If you are having trouble swallowing, it will also help to eat softer food and cut it up into small bites. Try to avoid foods that are difficult to swallow and food that could get stuck and block your airway. If this does happen, your caregiver will need to dislodge the food using abdominal thrusts, also known as the Heimlich maneuver.

Food with mixed consistencies like hard cereal and milk can cause choking because while you chew the cereal, the milk may slip down the wrong pipe. This can also happen when eating fruit like peaches that quickly separate into flesh and juice.

Adding sauces and gravies to food can help it go down more easily. If you do get something caught in your throat that isn’t blocking your airway, you can try taking a bite of applesauce to help it slide down.

In addition to choking, another safety concern is aspiration, which is breathing food or liquid into the windpipe or lungs. If you’ve been aspirating and develop flu-like symptoms, possibly with a cough, you may want to get a chest X-ray to check for pneumonia, which can become serious for people living with ALS.

While keeping safety in mind, try to find ways to keep your meals tasty and enjoyable. Ask your SLP or dietitian about ALS-friendly recipes and other food preparation tips.

Getting the Calories You Need

People living with ALS often struggle to consume enough calories to maintain their regular weight. Daily activities require more energy and calories than before, and when eating becomes more challenging, people tend to consume fewer calories. The resulting weight loss can lead to accelerated muscle deterioration, weakness, low energy, and other issues.

If you are struggling to maintain your weight, your dietitian will likely suggest ways to increase your caloric intake without eating a significantly larger amount of food each day. This can be done by eating high-protein foods, consuming more healthy fats such as avocados and olive oil, and adding high-calorie items like butter, sugar, honey, and whole milk to your meals.

If you are still unable to maintain your weight, you will want to discuss getting a feeding tube with your medical team.

Staying Hydrated

People living with ALS often struggle to consume enough liquid. Reasons may include choking when drinking water and wanting to minimize trips to the bathroom. But staying hydrated is critical to staying healthy and avoiding dehydration symptoms such as constipation, weakness, headaches, and thicker saliva, which can make swallowing more difficult.

It is important to develop a system to make water readily accessible whenever you feel thirsty. There are a variety of assistive devices that can help.

If you are having trouble grasping, you can try using a lightweight cup with one or two handles. If you have a favorite beverage container such as a cup, glass, bottle, or can that doesn’t have a handle, you can strap on a universal drink holder with an adjustable steel handle.

If you are not able to raise a cup to your mouth but can form a seal around a straw and have the strength to suck fluids up, you can try using a long straw or the Giraffe Bottle, which has a long, flexible straw.

If you have trouble reaching your mouth to the straw, you could set your cup or water bottle on something like an overturned bowl to raise its height. You can also add cup holders on your wheelchair and next to your bed. Another solution could be keeping a water bladder like a Camelbak with you.

If you are finding it hard to sip water up through a straw, you can try using a one-way-valve straw that keeps the liquid at the top of the straw, which can make it easier to drink and help you save energy.

Eating Independently

In addition to modifying the type of food you eat and how you prepare it, using assistive devices to get food to your mouth is the other key that can help you continue to eat independently. Your OT can assess your challenges and propose solutions.

If you are finding it difficult to grasp utensils, a utensil with a wider grip may help. You can either purchase built-up utensils or make your own by adding foam tubing to your own forks, knives, and spoons.

If you have arm strength but are unable to grasp utensils, you can put on a universal cuff and tuck the utensil into it. If your wrist is also weak, you can get a cuff with wrist support. And if you are having trouble getting food into your mouth at the right angle, you can try a bendable utensil.

If your arms or shoulders are getting tired when eating, you can try using lightweight, plastic utensils and/or sit at an angle so you can prop your elbow on the table. You can also try using a mobile arm support that clamps onto the table and supports your arm.

Image by Engin Akyurt from Pixabay

If you are having trouble scooping food off your plate, a scoop dish or clip-on food guard can make it easier to get food onto your utensil. If your bowl or plate keeps sliding on the table, you can set it on non-slip gripping material or purchase a plate or bowl with a suction cup.

If you are having trouble cutting your food with a standard knife, you can try using a rocker knife or a pizza cutter. If those don’t work, ask your caregiver to cut your food into small pieces before each meal.

If none of these assistive devices can help you eat on your own, the Obi robotic feeding device can scoop food for you and place it in your mouth.

These assistive eating devices are not covered by insurance. However, you can ask your ALS clinic or local ALS organization if you can borrow them at no cost from their equipment loan closet. You can also visit our Eating Devices page to learn more and purchase them directly.

Eating with Caregiver Assistance

If you are still able to chew and swallow safely but are unable to feed yourself, you can eat with the assistance of a caregiver. Caregivers will need to modify food, cut it into bite-size pieces, and scoop up each bite.

A Note for Caregivers

It is best not to rush the person you are feeding. Allow them to chew each bite and try to provide sips of water between bites. Stay in verbal and visual contact to make sure the person is doing fine. If the person chokes on a little liquid from time to time, it is okay, but if you think they are choking and unable to speak or breathe, you will need to perform the Heimlich maneuver to dislodge food that might be blocking their airway.

A Note for Caregivers

Getting Nutrition through a Feeding Tube

If you are still having trouble eating or swallowing, are getting overly fatigued while eating, or are losing weight, it may be time to consider receiving some or all of your nutrition and hydration through a feeding tube.

At some point, most people living with ALS elect to get a feeding tube, which involves a short surgical procedure followed by training from a dietitian.

A feeding tube can help ensure that you are well nourished, well hydrated, and don’t lose any more weight. You can still enjoy tasting food by mouth whenever you like, but your main source of nutrition will come from your feeding tube.

Getting Nutrition through a Feeding Tube

This can help make your meals less stressful and more pleasurable. Using a feeding tube can also reduce your risk of choking or having food and water go down the wrong pipe.

If pills and vitamins are hard to swallow, you can get some medications in liquid form or crush and administer them through the feeding tube as long as they are crushable.

Your neurologist, SLP, and dietitian can discuss the pros and cons of feeding tubes with you as well as when you should consider getting one.

This content on Home and Daily Living with ALS is provided by our friends at YourALSGuide. Learn more at https://www.youralsguide.com/.