ALS Nutrition |
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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 with ALS tend to consume fewer calories. The resulting weight loss can lead to accelerated muscle deterioration, weakness, low energy, and other issues.
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If you notice that you are losing weight, taking longer at meals, getting more tired when chewing, avoiding certain foods, or coughing or choking on food or liquid, notify your ALS clinic or medical team. These may be signs that the muscles around your jaw, lips, throat, and tongue are weakening. If you ignore these signs and lose weight, it may be hard to gain it back. But if you are proactive and develop strategies to eat well and stay hydrated, you can experience a better quality of life with greater strength, energy, and independence.
Meet with Your ALS Clinic Team
The first and most important step you can take is scheduling an appointment with your ALS clinic, or local medical team. Your speech language pathologist can do a swallowing evaluation and recommend swallowing techniques, positioning, and food preparation tips. Your dietitian can conduct a nutrition assessment, help modify your diet, answer questions, and provide ongoing guidance. Your occupational therapist can recommend adapted feeding tools like built-up utensils, arm supports, wrist braces, and modified plates and cups.
During each clinic visit, your team will monitor your progress and suggest any modifications to your plan. If, between visits, you are concerned about changes to your weight, ability to swallow, or anything else, contact your neurologist or clinic coordinator.
During each clinic visit, your team will monitor your progress and suggest any modifications to your plan. If, between visits, you are concerned about changes to your weight, ability to swallow, or anything else, contact your neurologist or clinic coordinator.
Increase Your Calories
Many people living with ALS do not get the calories they need on a daily basis. If you are struggling to maintain 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.
Other strategies may include eating six shorter meals a day instead of three longer ones, snacking more often, and consuming protein powders or shakes.
Other strategies may include eating six shorter meals a day instead of three longer ones, snacking more often, and consuming protein powders or shakes.
Modify Your Food
Make sure that you are eating foods that you are able to chew easily and swallow safely without choking. Your dietitian may suggest preparing softer foods, pureeing food, adding sauces and gravies to help food go down, and avoiding dry, crumbly foods that can get stuck in your mouth or throat. If you are experiencing swallowing difficulties, visit our Recipes for ALS page.
Stay Hydrated
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People living with ALS often struggle to consume the recommended 8-10 cups of liquid every day. 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. Dark urine is usually a sign that you are dehydrated.
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If you find yourself choking on “thin” liquids like water or juice, you can add commercial thickeners to them, which will help you swallow more easily. You may also want to consume thicker drinks like smoothies, milkshakes, nectars, and yogurt drinks. Keep in mind that coffee and alcohol can contribute to dehydration.
You may want to develop a system for tracking how much liquid you consume, even if only for a couple of weeks. Again, your dietitian can help you find a strategy that works for you.
You may want to develop a system for tracking how much liquid you consume, even if only for a couple of weeks. Again, your dietitian can help you find a strategy that works for you.
Conserve Your Energy
As you do with other daily activities, try to find ways to conserve your energy while eating. Exerting yourself unnecessarily will only increase the number of calories you need to consume. If you spend 45 to 60 minutes eating one meal, you may be burning more calories than you consume. Ask your caregiver to cut your food into smaller pieces before each meal. Be aware of your positioning and how far you need to reach for each bite. Ask your occupational therapist about easy-grip utensils and other adaptive tools. When your arms feel weak, you can ask your caregiver to help feed you.
About Dietary Supplements
Many people living with ALS look for alternative treatments that can help. Unfortunately, research has not found any alternative treatments, including dietary supplements, that can help cure, slow, or reverse ALS. Ask your dietitian’s opinion on whether you should take a supplement, like a daily multivitamin.
Some ALS patients and families have spent a lot of money—money that could have been used for care and equipment—on unproven alternative treatments that never yielded results. ALSUntangled is a trustworthy website that can help you make sense of alternative/off-label ALS treatment options, such as supplements, that you may find advertised online.
Some ALS patients and families have spent a lot of money—money that could have been used for care and equipment—on unproven alternative treatments that never yielded results. ALSUntangled is a trustworthy website that can help you make sense of alternative/off-label ALS treatment options, such as supplements, that you may find advertised online.
Consider a Feeding Tube
If you and your dietitian find that these strategies are not helping you maintain your weight, you may want to consider getting your nutrition, hydration, and even medication 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 your dietitian.
A feeding tube can 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. This can help make your meals less stressful and more pleasurable. Using a feeding tube can also reduce your risk of choking, or of having food and water go down the wrong pipe (into your lungs instead of your stomach), which can lead to life-threatening pneumonia.
Your neurologist and dietitian can discuss the pros and cons of feeding tubes with you, and when you should consider getting one. Learn more about feeding tubes.
A feeding tube can 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. This can help make your meals less stressful and more pleasurable. Using a feeding tube can also reduce your risk of choking, or of having food and water go down the wrong pipe (into your lungs instead of your stomach), which can lead to life-threatening pneumonia.
Your neurologist and dietitian can discuss the pros and cons of feeding tubes with you, and when you should consider getting one. Learn more about feeding tubes.
Ask the DietitianHow many calories should I consume each day? How much water? What can I eat if I'm having swallowing difficulties? What about constipation? Massachusetts General Hospital dietitian Jamie Garry answered your questions on our Ask the Dietitian page.
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