Swallowing and Nutrition in ALS

Nutrition and ALS 

While good nutrition is important for everyone, it can be very challenging for people living with ALS to maintain a healthy diet due to chewing and swallowing difficulties often experienced at some point in the disease progression. Improper nutrition can cause people to feel tired, lower their resistance to infection, speed the loss of muscle mass, cause constipation and lead to a host of other health problems.

A nutritionist or speech therapist can help people living with ALS and their caregivers put together a healthy diet that works to meet each person’s specific needs. In general, though, when supplied with the right education and information, planning and preparing healthy meals the whole family will enjoy can be easy and stress free.

Below are some important facts to know and tips on maintaining good nutrition despite having ALS.

1. Protein provides the building blocks for muscle and many other tissues in your body.

Excluding water, about three-quarters of our body’s solid mass is made up of protein. If you don’t consume enough protein, your body may break down muscle tissue to supply the quantity it needs. While protein is very important for people living with ALS, it can be difficult to consume the necessary amount. Meat, including beef, poultry and fish, eggs, beans, nuts, milk and cheese are all-natural sources of protein.

2. Fiber can help you maintain a healthy weight and improve your digestive health.

Fruits, vegetables, whole-grain breads, and cereals are all good sources of fiber. Unfortunately, fibrous foods can also be hard for some people living with ALS to swallow. To make sure you’re getting enough fiber in your diet, consider eating fruits or vegetables with a soft consistency, such as bananas, canned peaches or cooked beans or applesauce and other fruits that have been pureed.

3. Most people need a half-gallon of water each day, or eight 8-ounce cups of liquid.

Dehydration can be another problem for people with swallowing difficulties, and getting enough water is every bit as important as getting enough food. If you’re having trouble swallowing liquids, you can get the water you need by drinking thick liquids or adding thickening powder to your favorite beverages. Eating food with a high-water content, such as canned fruits or pudding can also be a big help for people living with ALS. People with mobility challenges may limit their liquid intake to decrease trips to the bathroom. Strategies and equipment for easier transfers and independence are available.

4. Getting enough calories daily is critical for people living with ALS.

Getting enough calories to maintain a healthy weight can be challenging for people living with ALS. Though many people think it’s healthy to diet or limit fat intake, for people living with ALS it’s much more important to make sure you’re getting enough calories to fuel your body and prevent it from breaking down muscle tissue. If you quickly feel full or grow tired when eating, try having six to eight small meals each day instead of three large ones. You may also consider a feeding tube to supplement your calorie intake throughout the day.

5. Vitamins and minerals help boost the immune system, support normal growth and development, and help cells and organs do their jobs.

While there’s not yet clear evidence that vitamin supplements can help the body fight ALS, it’s been suggested that vitamin E may be beneficial to people living with ALS, but the evidence is inconclusive. However, it’s still a good idea to consider taking a daily multivitamin and perhaps an additional vitamin E supplement. Some vitamins come in either solid or liquid form, so you can choose whichever is easiest for you to consume.

Additional information regarding maintaining good nutrition while living with ALS can be  obtained from your physician, dietitian or ALS health care team.

Eating for ALS 

One of the things most people wonder when they learn they, or someone close to them, has ALS is what should they eat.

If you are not losing weight and don’t have any issues with chewing or swallowing, I recommend keeping with your usual balanced diet. However, if you are one of those people that has always been careful to avoid certain foods for health reasons or for weight loss, ALS may be a bit of an adjustment. While there isn’t a lot we know about nutrition and ALS yet, we do know that not losing weight is beneficial. So, feel free to be a bit more generous with heart healthy fats (olive or canola oil, nuts, avocado, peanut butter). These foods are good sources of calories and may be needed to help you maintain your weight. You can also give yourself permission to enjoy some of those “treat” foods more often.
The goal, while things are normal for you with chewing and swallowing, is to still have a relatively balanced diet with all food groups. If, however, you are having trouble chewing or swallowing and keeping your weight stable is becoming a challenge, let your dietitian know. They will help you create a new plan to help you keep your weight and nutrition up to help you have the energy you need.

A Food List for Healthful Eating

When you focus on eating more whole grains, legumes, fruits, vegetables, nuts and seeds you may improve how much fiber, vitamins and minerals you eat. Include a variety of healthful foods from each category with your meals to improve your nutrient intake and enjoyment of meals.

Grains:
Choose whole grains for at least half of your grain selections, including whole wheat, barley, rye, buckwheat, corn, teff, quinoa, millet, amaranth, brown and wild rice, sorghum and oats. Choose grain products: such as bread, rolls, prepared breakfast cereals, crackers, and pasta made from whole grains.

Protein Foods:
Choose fresh or frozen beef, pork, lamb, poultry, seafood or fin fish, eggs, nuts and seeds, nut or seed butters, soy foods (tofu, tempeh, or soy nuts), meat alternatives: veggies burgers and plant protein based “sausages”, and legumes (dried beans, lentils or peas).

Dairy Foods:
Choose milk, yogurt, cottage cheese, cheeses, and fortified milk alternatives: soy milk, almond milk, rice milk. 

Vegetables:
Choose a variety of fresh, frozen and canned (unsalted) whole vegetables. Good vegetable options include: dark-green, red and orange vegetables, legumes (beans and peas), starchy vegetables, and low-sodium vegetable juices. 

Fruits:
Choose a variety of fresh, frozen, canned and dried, whole unsweetened fruits canned in water or fruit juice, and 100% fruit juice. 

Oils and Fats:
Choose unsaturated vegetable oils (olive, peanut and canola), margarines and spreads (with liquid oil being the first ingredient), salad dressings, and mayonnaise.

Alcohol:
If you choose to drink, women should have no more than one drink per day and men should have no more than two per day. One drink is measured as 5 ounces wine, 12 ounces beer, or 1.5 ounces spirits.

Fluids:
Choose any beverages including: water, nutrition drinks, smoothies, juice, milk, sodas, coffee, or tea. It is best to limit your alcohol beverages. Most people feel better if they have between 6-8 cups of fluids at minimum. 50% or less of daily fluids should contain caffeine. 

Feeding Tubes 

When is it time to consider a feeding tube? Each person is different but in general some signs you may need a feeding tube include:

1. Trouble swallowing

2. Choking on food, liquids, saliva

3. Fatigued when chewing

4. Losing weight

5. Mealtime is a long process

6. If you have compromised breathing

A Consumer's Guide to Living and Eating with a Peg Tube,

So They're Telling You to Get a Feeding Tube PDF Guide

Overview of Feeding Tubes for ALS: https://www.youralsguide.com/feeding-tubes.html

A Patient’s Perspective:

The thought of getting a feeding tube gave me the willies. “How gross,” I thought. But in reality it has been my best decision during the progression of ALS. I am a patient with ALS, into my third year of bulbar onset.

Here’s what I’ve learned and some reasons I find the feeding tube beneficial:

1. More control over nutrition and hydration. Before I had the tube surgically implanted, it would take an hour or more to chew and swallow meals, leaving me exhausted. And I couldn’t participate in mealtime discussions because eating took all my concentration to get the food down without choking. I started cutting back on quantity and quality of nutrition, leaving me weaker and more susceptible to infections. Now I can select the type of “formula” (specially made containers of liquid for feeding tubes) for balanced nutrition with help from a nutritionist at my clinic. If I need more calories or fiber, for example, there’s an easy solution.

2. An easy adjustment period. Upon good advice, I had the tube put in while I could still chew and swallow, in addition to the leisure time to learn and adjust to the feeding tube. Staying overnight at the hospital after surgery was more informative than doing the surgery as an out-patient. Also, a home health nurse who came to our home within hours of my being discharged from the hospital was extremely beneficial. She instructed Elayne and me on correct ways to cleanse the site to avoid infection, which I’ve never had in the two years of having a feeding tube, and she brought us supplies—gauze with slits to fit around the tube, saline solution, sterile cotton tips, etc.

3. Easier to take medications and vitamins. Even the small pills were becoming too difficult to swallow without choking and coughing. Now I crush tablets, open capsules, and buy the liquid or capsule forms of vitamin E, which I make into a thin liquid paste, ready to pour down the plastic container leading to the feeding tube. I can administer my own feedings while my arms and hands are still functional.

4. No obvious sight of the site. The PEG tube is soft and pliable, with a small diameter, about 9-12 inches long, coming out from the center of the stomach, and it’s relatively easy to hide. (A “button” tube is also available if I wish to change.) To hold it nicely in place against my stomach, I bought some “Tube Tops” (honestly, that’s what they’re called!), which can be found at Target and Wal-Mart, in a variety of colors. Having a PEG tube is practical, neat, clean, and convenient, and I am totally unaware of its presence. I would encourage anyone considering a feeding tube to ask someone in your support group to show one to you.

A Caregiver's Perspective:

After Jackie’s neurologist prepared us for the need of a feeding tube, she asked me, “On a scale of 1-10, how gross would it be to have a feeding tube?” Never having seen one, I found it difficult to imagine. So after we saw the feeding tube of an ALS friend, I decided it was about a “2”, appearance-wise. In the two intervening years the tube has become second nature and not one bit gross to us or others, including my eight-year-old grandson who helps her occasionally with “tube meals” and would dearly love to take Jackie and her tube to school for his own show and-tell.

From a caregiver’s perspective, the tube brought me a sense of relief. I hadn’t realized how much I was fretting about her not getting enough nutrition and hydration. Afterwards, she could get both her nutrition with the tube meal and also taste anything she wanted at her own pace. Much to my relief, she wasn’t choking on food as much, because she could eat less and enjoy more. Choking fits are stressful—for both the patient and caregiver. Cooking became easier, since I could prepare a few easy to-swallow dishes that tasted good, without worrying about nutrition. Dining out became easier as well. Jackie would have a tube meal before going to a restaurant or a friend’s house, and then would eat a small portion while enjoying conversation. Traveling is no problem, since she can give herself a tube meal in the car, or carry a few items in her bag if traveling by air.

It was suggested Jackie get the tube before she absolutely needed it, and before she had breathing problems. In either of these cases, the body might not tolerate the surgical procedure as easily. Although the outpatient procedure was completed in about 30 minutes under local anesthesia, Jackie was admitted to the hospital overnight, just to make sure the tube was inserted properly and that we could receive instruction on care and maintenance. She experienced only a few days of pain, but nothing that a few pain pills couldn’t remedy. In fact, the day after her procedure, we accepted an invitation for the following day to sit in Curt Schilling’s box for game one of the World Series with the Diamondbacks and Yankees.

I noticed a change in Jackie’s personality after the tube placement. We didn’t know this at the time, but hunger can manifest itself as irritability and tiredness. Being able to control her intake of food with the tube, she became more like her “take charge” self. Our meal-time conversations occur as ever, just over tube meals — a small price to pay for all the advantages we gained.

~ By Jackie Boswell and Elayne Achilles, from ALS Arizona

Safe Swallowing Guidelines 

Diet:

Food

• Add extra gravies, sauces, condiments, spreads, etc. to moisten foods
• Use extra caution with particulate foods: rice, peas, corn, couscous
• Use extra caution with foods that have two textures: cold cereals & milk, soups with broth and chunks, juicy fruits

Liquids

• Put your chin down to 45 degrees when drinking

Pills

• Take pills in applesauce, pudding or yogurt
• Cut pills in half if you can or ask for medication in liquid form

Guidelines:

• Sit upright during all meals, drinks, & snacks
• Alternate solids & liquids
• Take small bites
• Eat slowly
• Take one small sip at a time
• Eliminate distractions: turn off tv, radio, eat in a quiet area
• Do not talk with food in your mouth
• Swallow completely after each bite
• Remain upright for at least 30 minutes after eating
• Oral care is extremely important, especially if you are having difficulties swallowing
  • Make sure to brush your teeth and tongue before and after meals, and at bedtime. This will reduce your risk of aspiration pneumonia. If you have dentures, remove and brush your gums and dentures before and after meals, and at bedtime.

Contact your Speech Pathologist if you have any concerns or questions.