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Below you will find answers to your questions about best nutritional practices while living with ALS.
How many calories should I consume each day?This is always a hard question to give a quick answer to because it depends on your height, weight, age, sex, and stage of ALS.
In general, I recommend trying to not stress out about counting calories, though it can be good to have a general sense of how much your body needs. That way, if you are looking at labels, you can get a sense of what portion of your daily needs you are meeting with your individual meals or snacks. The best way to tell if you are eating the right amount is to monitor your weight. Weigh yourself at least once a week, if possible, preferably in the morning before you have eaten. Generally, maintaining your weight or gaining about ½ to 1 pound a week is ideal. The focus is to avoid losing weight. If you notice your weight falling, work on adding more calories. |
Jamie Garry is a Senior Clinical Research Dietitian at Massachusetts General Hospital. She has worked with patients living with ALS, diabetes, HIV, and Parkinson’s disease. Jamie provided nutritional counseling to people living with ALS for the EAT MORE study. |
Calculate Your CaloriesTo calculate how many calories you need each day, use the ALS Calorie Calculator developed by Dr. Edward J. Kasarskis, Medical Director of the University Kentucky ALS Multidisciplinary Center. For more personalized recommendations, discuss your situation with a dietitian.
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How can I get the calories I need to maintain my weight?
It is best to eat a variety of foods from all the major food groups: vegetables, fruits, grains or starches, protein, dairy/dairy substitutes, and healthy fats. Try spreading your food intake out over the whole day. Avoid skipping meals. Aim for at least three meals a day and add in some snacks. This will help you from feeling too full and will help keep your energy up throughout the day.
Choose nutrient-dense foods so you don’t have to eat a huge volume of food to meet your calorie needs. Healthy fats have a lot of calories without much volume. Foods like nuts and nut butters, seeds, avocados, olives, and oils like olive or canola oil are high in healthy calories, so be sure to include some of those.
Choose nutrient-dense foods so you don’t have to eat a huge volume of food to meet your calorie needs. Healthy fats have a lot of calories without much volume. Foods like nuts and nut butters, seeds, avocados, olives, and oils like olive or canola oil are high in healthy calories, so be sure to include some of those.
Is it okay to eat lots of bread and processed foods to get enough calories?
Focus on getting most of your calories from healthy foods and beverages, but feel free to round out your day with a treat or two.
We want to maintain your weight, but too many processed foods or refined breads can cause constipation and lead to other health problems like high blood sugar, elevated cholesterol, and high blood pressure. Choosing foods with more nutrients helps maintain your weight as well as improve your overall health. That said, no food is off limits. If you love cookies, have a cookie! Just don’t only eat cookies—you probably won’t feel very good.
We want to maintain your weight, but too many processed foods or refined breads can cause constipation and lead to other health problems like high blood sugar, elevated cholesterol, and high blood pressure. Choosing foods with more nutrients helps maintain your weight as well as improve your overall health. That said, no food is off limits. If you love cookies, have a cookie! Just don’t only eat cookies—you probably won’t feel very good.
Should I add protein shakes or nutrition drinks to my diet?
In general, I am a proponent of getting most of your calories and nutrients from whole foods and beverages. If you do go the protein shake or nutrition drink route, try to choose ones with more whole ingredients by making your own smoothies and adding in nut butters or seeds to up the fiber, protein, and healthy fats. Another easy tip if you can tolerate dairy is to make fortified milk by adding an extra spoonful of dried milk powder to a glass of milk, smoothie, or milkshake for extra calories, protein, and calcium without additional volume.
That said, I know it can be hard to get in enough calories from foods and beverages alone and it can be a burden to prepare fresh smoothies, milk shakes, etc. So, if you are having a hard time eating and drinking enough, you may wish to add in a nutrition supplement like a Boost, Ensure, Carnation Instant Breakfast, or other commercial drink. Some premade smoothies and beverages, like Koia, Naked, Odwalla, and Daily Harvest, will still give you some of the benefits of fruits and vegetables.
If you do choose to go the protein supplement route, be mindful of not overconsuming, especially if you have any kidney issues.
Some insurances may cover part of a prescription for some of these nutrition supplements (namely Boost or Ensure), though coverage is very limited for PALS at this time, unfortunately.
That said, I know it can be hard to get in enough calories from foods and beverages alone and it can be a burden to prepare fresh smoothies, milk shakes, etc. So, if you are having a hard time eating and drinking enough, you may wish to add in a nutrition supplement like a Boost, Ensure, Carnation Instant Breakfast, or other commercial drink. Some premade smoothies and beverages, like Koia, Naked, Odwalla, and Daily Harvest, will still give you some of the benefits of fruits and vegetables.
If you do choose to go the protein supplement route, be mindful of not overconsuming, especially if you have any kidney issues.
Some insurances may cover part of a prescription for some of these nutrition supplements (namely Boost or Ensure), though coverage is very limited for PALS at this time, unfortunately.
What if I have special dietary needs, such as no gluten, dairy, and sugar?
There are lots of options for food allergies or intolerances. If you cannot tolerate gluten, choose grains or starches that are gluten free, like rice, quinoa, corn, and amaranth. Or choose starchy vegetables instead, like potatoes, sweet potatoes, peas, plantains, and winter squashes.
If you have trouble with dairy, try a plant based dairy substitute like oat, almond, soy, or pea-based milks, yogurts, and cheeses. Or skip the dairy and dairy alternatives altogether, but make sure you are consuming foods with calcium such as beans, hummus, tofu, almonds, dark leafy greens, and fortified breads and cereals.
Depending on your circumstances regarding the need to limit sugar, you may choose foods with a lower glycemic index, like whole grains, vegetables, and most protein and fat-rich foods versus sweetened items and fruit.
Work with a local dietitian if you need help planning around your specific dietary restrictions.
If you have trouble with dairy, try a plant based dairy substitute like oat, almond, soy, or pea-based milks, yogurts, and cheeses. Or skip the dairy and dairy alternatives altogether, but make sure you are consuming foods with calcium such as beans, hummus, tofu, almonds, dark leafy greens, and fortified breads and cereals.
Depending on your circumstances regarding the need to limit sugar, you may choose foods with a lower glycemic index, like whole grains, vegetables, and most protein and fat-rich foods versus sweetened items and fruit.
Work with a local dietitian if you need help planning around your specific dietary restrictions.
What vitamins and supplements do you recommend? Are there any potential issues with Vitamin C/Zinc, Vitamin D, or B12?
I am a whole food advocate whenever it is possible. Try to get as many nutrients through food versus taking a supplement. Based on my knowledge, there are no supplements that have been shown to be specifically beneficial for PALS, so choosing to take a supplement is based on your own needs and intake.
Depending on where you live, it can be very hard to get adequate amounts of Vitamin D through food or the sun, so a vitamin D supplement could be beneficial (generally about 1000 IU/ day), especially during winter, or if you live in the north.
If you are having trouble consuming enough food by mouth, you may wish to take a multivitamin to cover your bases. If you wind up taking a nutrition supplement like Boost or Ensure, these already have vitamins and minerals added as well.
In general, most vitamins taken at recommended doses won’t hurt you. Water soluble vitamins (like vitamin C and the B vitamins) get peed out, so if you consume too much, you will likely just have expensive urine. Fat soluble vitamins (A, D, E, and K) can build up in your body if you take too much. Avoid mega doses of any vitamins, unless prescribed by a doctor.
Taking too many supplements can make you feel full or cause GI distress, so be mindful if you are having those symptoms. Also, some supplements can be very costly, so if paying for supplements is interfering with your ability to buy food or other essentials, skip the supplements or talk to your doctor about getting supplements prescribed if they think they are necessary. Your insurance may be able to help cover some of the cost.
Depending on where you live, it can be very hard to get adequate amounts of Vitamin D through food or the sun, so a vitamin D supplement could be beneficial (generally about 1000 IU/ day), especially during winter, or if you live in the north.
If you are having trouble consuming enough food by mouth, you may wish to take a multivitamin to cover your bases. If you wind up taking a nutrition supplement like Boost or Ensure, these already have vitamins and minerals added as well.
In general, most vitamins taken at recommended doses won’t hurt you. Water soluble vitamins (like vitamin C and the B vitamins) get peed out, so if you consume too much, you will likely just have expensive urine. Fat soluble vitamins (A, D, E, and K) can build up in your body if you take too much. Avoid mega doses of any vitamins, unless prescribed by a doctor.
Taking too many supplements can make you feel full or cause GI distress, so be mindful if you are having those symptoms. Also, some supplements can be very costly, so if paying for supplements is interfering with your ability to buy food or other essentials, skip the supplements or talk to your doctor about getting supplements prescribed if they think they are necessary. Your insurance may be able to help cover some of the cost.
How can I avoid constipation?
Be sure to stay hydrated and eat lots of fiber.
Aim for at least 25 grams of fiber a day. Fiber is found in plants like whole grains, fruits, vegetables, and beans. Some good sources include beans, lentils, bran, whole wheat breads and pastas, oatmeal, berries, pears, bananas, peas, broccoli, nuts, and chia and flax seeds.
As you increase your fiber consumption, be sure to also increase your fluids. Water is the best to rehydrate your body, but fruit juices, seltzer, milk, and broth are all good choices. Foods with high water content can also help. Fruits, vegetables, soups, stews, popsicles, water ice, and gelatins all contain a high percentage of water.
Constipation can also be caused by being sedentary, which, depending on your functional abilities, may be hard to avoid. If you are able, try to get in some safe movements. If possible, try some gentle twisting stretches of your abdomen, which can help get things moving.
If constipation remains an issue, talk to your doctor about adding in a medication that can help alleviate the symptoms.
Aim for at least 25 grams of fiber a day. Fiber is found in plants like whole grains, fruits, vegetables, and beans. Some good sources include beans, lentils, bran, whole wheat breads and pastas, oatmeal, berries, pears, bananas, peas, broccoli, nuts, and chia and flax seeds.
As you increase your fiber consumption, be sure to also increase your fluids. Water is the best to rehydrate your body, but fruit juices, seltzer, milk, and broth are all good choices. Foods with high water content can also help. Fruits, vegetables, soups, stews, popsicles, water ice, and gelatins all contain a high percentage of water.
Constipation can also be caused by being sedentary, which, depending on your functional abilities, may be hard to avoid. If you are able, try to get in some safe movements. If possible, try some gentle twisting stretches of your abdomen, which can help get things moving.
If constipation remains an issue, talk to your doctor about adding in a medication that can help alleviate the symptoms.
I’m having trouble swallowing when I eat. What types of food or recipes do you recommend?
Please see your local speech language pathologist (SLP) for a swallowing consultation and recommendations on whether you need a modified texture or thickened liquids. Your SLP can also offer tips on how to position yourself to eat more safely.
Combination foods like broth-based soups with chunks, or cold cereal with milk, are often the hardest things to swallow because you must swallow both a thin liquid along with solids. You may want to avoid these items early on. Many people have issues swallowing bread, tough meats, salads, and raw vegetables. Identify which foods are most bothersome for you and avoid those. Be kind to yourself and know that even throughout the day, your ability to swallow can change. Some people do fine in the morning, for example, but as the day goes on and they get tried, chewing and swallowing can become more difficult.
Softer foods are generally easier to eat. Choosing moister foods can also help. An added benefit of soft and moistened foods is that they are often higher in calories and take less energy to eat. Some examples are mashed potatoes with gravy, chicken salad with mayo, cooked vegetables with added butter or oil, canned fruits, and naturally softer fruits like bananas.
Here are some recommendations for early modifications:
Dairy
Fruits
Vegetables
Meat/Poultry/Fish/Legumes
Starches (six or more servings per day)
Fats and Oils
Combination foods like broth-based soups with chunks, or cold cereal with milk, are often the hardest things to swallow because you must swallow both a thin liquid along with solids. You may want to avoid these items early on. Many people have issues swallowing bread, tough meats, salads, and raw vegetables. Identify which foods are most bothersome for you and avoid those. Be kind to yourself and know that even throughout the day, your ability to swallow can change. Some people do fine in the morning, for example, but as the day goes on and they get tried, chewing and swallowing can become more difficult.
Softer foods are generally easier to eat. Choosing moister foods can also help. An added benefit of soft and moistened foods is that they are often higher in calories and take less energy to eat. Some examples are mashed potatoes with gravy, chicken salad with mayo, cooked vegetables with added butter or oil, canned fruits, and naturally softer fruits like bananas.
Here are some recommendations for early modifications:
Dairy
- Milk
- Milkshakes
- Yogurt
- Soft sliced cheeses
- Soft cheeses (blue, feta, mozzarella)
- Cottage cheese
Fruits
- Fruit juices or nectars
- Canned fruit
- Ripe, fresh fruit (avoid skin)
Vegetables
- Soft, cooked vegetables (avoid corn)
Meat/Poultry/Fish/Legumes
- Soft/moist meat, fish, poultry (gravy to help soften if needed)
- Casseroles
- Eggs, soft cooked or scrambled
- Sandwiches with soft bread and shaved deli turkey or ham
- Tuna salad or egg salad without celery or raw vegetables
- Canned, soft meats and fish like tuna or chicken
- Moist, soft legumes
- Smooth peanut butter or other nut butters
Starches (six or more servings per day)
- Cold dry cereals that soften well in milk (no nuts, dried fruit, coconut)
- Cooked cereal (Cream of Wheat®, Cream of Rice® oatmeal, grits)
- French toast or pancakes
- Soft breads or muffins (no hard rolls)
- Soft pasta
- White rice
Fats and Oils
- Butter
- Margarine
- Cream
- Oil
- Mayonnaise
- Salad dressing
- Mashed avocado
- Cream cheese
- Whipped topping
- Sauces
- Gravies
Recipes for ALSIt can be challenging to find meals that work for you when you are having trouble swallowing and are supposed to consume a lot of calories. For breakfast, snack, soup, smoothie, and juice ideas, visit our Recipes for ALS page.
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How much water should I drink each day?
The general rule of thumb is to drink 1 ml of water for every 1 calorie of food. So, if you need 2000 calories, you would want to consume 2000 ml (or 2 Liters, which is about 64 oz, or eight 8 oz cups of water) per day. You can also use the ALS Calorie Calculator to calculate your ideal daily liquid intake. Try to spread your fluids throughout the day.
Water is important, but especially since many PALS have a hard time getting enough calories, you can certainly use higher calorie beverages to get more fluids as well, such as milk and juice. Moderate your caffeine intake, as caffeine can act as a diuretic that makes you pee more, which can dehydrate you.
Other foods with higher water content can also improve your hydration status, like fruits, vegetables, broths, gelatin, and popsicles.
I know some PALS restrict fluid intake if getting to the bathroom can be a challenge, but please try to consume adequate fluids. Work with a caregiver to ensure you can use the restroom when you need it. Dehydration can lead to constipation, lethargy, changes in blood pressure, and many other issues.
Water is important, but especially since many PALS have a hard time getting enough calories, you can certainly use higher calorie beverages to get more fluids as well, such as milk and juice. Moderate your caffeine intake, as caffeine can act as a diuretic that makes you pee more, which can dehydrate you.
Other foods with higher water content can also improve your hydration status, like fruits, vegetables, broths, gelatin, and popsicles.
I know some PALS restrict fluid intake if getting to the bathroom can be a challenge, but please try to consume adequate fluids. Work with a caregiver to ensure you can use the restroom when you need it. Dehydration can lead to constipation, lethargy, changes in blood pressure, and many other issues.
I choke when I try to drink water and other liquids. What can I do to stay hydrated?
First, meet with a speech language pathologist. They will be able to assess your swallow and can determine how thick you may need your water and other liquids. There are products available, such as Simply Thick, Thick-it, and Thick and Easy, that can change the thickness of the liquids and make them easier and safer to swallow.
Aside from thickening your liquids, you can choose foods that are high in water content, like fruits, vegetables, yogurt, and jello. You may also be able to better tolerate thick, pureed soups that are high in water content, like a pureed black bean soup. If you have trouble with thin liquids, avoid thin broth-based soups (like chicken noodle), as those can be some of the most complicated to swallow. You may also be able to tolerate other thicker beverages, such as smoothies and milkshakes.
A feeding tube can also be a great option, even if you can still eat by mouth but have trouble with liquids. You can use the tube to consume water or a tube feed to improve your hydration.
Aside from thickening your liquids, you can choose foods that are high in water content, like fruits, vegetables, yogurt, and jello. You may also be able to better tolerate thick, pureed soups that are high in water content, like a pureed black bean soup. If you have trouble with thin liquids, avoid thin broth-based soups (like chicken noodle), as those can be some of the most complicated to swallow. You may also be able to tolerate other thicker beverages, such as smoothies and milkshakes.
A feeding tube can also be a great option, even if you can still eat by mouth but have trouble with liquids. You can use the tube to consume water or a tube feed to improve your hydration.
Pills are getting harder to swallow. What should I do?
Talk with your doctor or pharmacist. Some pills might be available in a liquid form, or can be crushed. Other medications must be consumed whole. Sometimes swallowing a pill with a food like applesauce or yogurt can also make swallowing easier, but please check with your pharmacist to make sure it would work for your specific medication.
Your speech language pathologist can help ensure that you are swallowing safely and offer additional techniques to improve safe swallowing.
If you are considering a feeding tube, the ability to take medications through the tube may be a good option.
Your speech language pathologist can help ensure that you are swallowing safely and offer additional techniques to improve safe swallowing.
If you are considering a feeding tube, the ability to take medications through the tube may be a good option.
Is it okay to drink alcohol?
Yes! In moderation of course.
Unless you have any additional medical considerations, or are on any medications that contraindicate, consuming one or two alcoholic drinks a day is generally fine. Alcohol does not offer much in terms of nutrients, so consider alcohol a treat and do not use it as your primary means of getting more calories.
There can, of course, be many negative effects of alcohol, so consider your own situation. If you have a history of substance abuse or liver damage, you should avoid consuming alcohol.
Unless you have any additional medical considerations, or are on any medications that contraindicate, consuming one or two alcoholic drinks a day is generally fine. Alcohol does not offer much in terms of nutrients, so consider alcohol a treat and do not use it as your primary means of getting more calories.
There can, of course, be many negative effects of alcohol, so consider your own situation. If you have a history of substance abuse or liver damage, you should avoid consuming alcohol.
How will I know when it’s time to get a feeding tube?
Having a feeding tube placed is a very personal decision and one you should discuss with your care team. I personally advocate for early placement of a feeding tube if it lines up with your goals.
Feeding tubes should ideally be placed before you really need them—before you have had significant weight loss, while you can still eat at least some food by mouth, and before you have significant breathing problems. If you already have breathing issues or weight loss, there is a higher chance you may have a complication with the placement of the feeding tube, though most likely you would still be able to have a feeding tube placed.
Feeding tubes can be a great option for getting some extra calories. If you can still eat by mouth, you might choose to eat foods that you enjoy and have an easy time chewing and swallowing by mouth, and then supplement your intake with a tube feed or doing an overnight feed. The feeding tube can also be used for taking most of your medications as well as for extra fluids and hydration. You may eventually choose or need to use the feeding tube for all of your nutrition and hydration.
Feeding tubes should ideally be placed before you really need them—before you have had significant weight loss, while you can still eat at least some food by mouth, and before you have significant breathing problems. If you already have breathing issues or weight loss, there is a higher chance you may have a complication with the placement of the feeding tube, though most likely you would still be able to have a feeding tube placed.
Feeding tubes can be a great option for getting some extra calories. If you can still eat by mouth, you might choose to eat foods that you enjoy and have an easy time chewing and swallowing by mouth, and then supplement your intake with a tube feed or doing an overnight feed. The feeding tube can also be used for taking most of your medications as well as for extra fluids and hydration. You may eventually choose or need to use the feeding tube for all of your nutrition and hydration.
