Diet and Nutrition for ALS

Treatments for amyotrophic lateral sclerosis (ALS), a progressive neurological disease affecting muscle control, are intended to help slow its progression, prevent complications, and preserve independence for as long as possible. Diet is a crucial therapy for ALS, especially as dietary needs evolve with the progression of the disease. Diet can be optimized to support overall health and immune function in people with ALS.

This article discusses diet challenges for people with ALS and how proper nutrition helps improve the symptoms and nutrition status of individuals with this disease.

ALS Symptoms That Affect Diet

The symptoms of ALS vary from person to person, but it involves a progressive loss of muscle function, which eventually impacts metabolism (the bodily process that changes food into energy) and the ability to eat normally. Below are two ALS symptoms that influence dietary changes as the disease progresses.

Dysphagia

People with ALS may develop dysphagia (difficulty swallowing). As ALS progresses, it becomes harder to move food from the mouth to the throat and into the digestive tract. People living with ALS also experience thickened saliva, making it harder to swallow.

It is important to ensure that foods and beverages are safe and easy to swallow for people with dysphagia. While thick, chewy, hard, and sticky foods may seem obvious to avoid in this instance, dysphagia can also make it unsafe to swallow thin liquids.

Because the muscles in the throat no longer work properly, dysphagia increases the risk of thin liquids entering the trachea (windpipe) and traveling to the lungs (aspiration) instead of going down the esophagus (food tube) and into the stomach. Aspiration can be dangerous for people with dysphagia. Aspirated food can cause respiratory infections, such as pneumonia, which are harder for people with ALS to fight off.

Hypermetabolism

People with ALS commonly develop hypermetabolism, which means baseline metabolic rate (the amount of energy their body uses each day) is faster than expected. As a result, someone with ALS will have approximately 15% higher calorie needs than those without ALS.

While researchers are unclear why the metabolic rate changes, it can lead to unintended weight loss and skeletal muscle mass loss, resulting in a condition called cachexia. Cachexia occurs when you lose over 5% of your body weight in under 12 months. It can cause frailty and weakness. This can lead to malnutrition since getting enough calories isn't enough to reverse the condition.

How Diet and BMI Impact ALS

There is not one specific cause of ALS. Instead, many factors are thought to contribute to the risk of developing the condition.

Diets rich in antioxidants and anti-inflammatory compounds, like vitamins E, A, and C, may reduce ALS risk. One study found that people who consumed more carotenoids, fat-soluble pigments found in colorful fruits and vegetables, had a reduced risk of developing ALS. Still, the evidence is mixed.

Because of the nature of ALS, including symptoms like hypermetabolism and dysphagia, having a higher than average body mass index (BMI) may increase survival time.

Nutrition is crucial in managing ALS symptoms and supporting overall health throughout the progression of the disease.

ALS Diet

An ALS diet should help an individual maintain muscle mass, meet increased energy needs, support immune health, and improve quality of life as much as possible.

Below are some nutrition considerations for individuals living with ALS. Keep in mind that meal plans for people with dysphagia should always be discussed with a healthcare provider who can help create a safe and adequate diet plan tailored to individual needs.

Protein

Getting enough protein is important to help sustain muscle mass in people living with ALS. Protein and amino acids are found in all foods, including plant and animal sources, but some foods contain more per serving than others.

Examples of protein sources for people with ALS are:

• Lean poultry
• Fish
• Nuts
• Seeds
• Eggs
• Beans
• Peas
• Lentils
• Soy foods like tofu, tempeh, and edamame

Fiber

Fiber is only found in plant foods and supports bowel regularity, inflammation management, and overall health. People with dysphagia should choose plant foods that have been softened or blended up to a safe consistency.

Sources of fiber that could be included in an ALS diet include:

• Whole grains, such as brown rice, quinoa, oats, barley, millet, and whole wheat
• Legumes, including beans, peas, and lentils
• Nuts and seeds
• Fruits, like apples, bananas, berries, peaches, and pears
• Vegetables like sweet potatoes, carrots, bell peppers, mushrooms, and broccoli

Calories

People with ALS have approximately 15% higher calorie needs than those without ALS because their metabolism works faster than is typical. Furthermore, many people with ALS struggle to maintain muscle mass and body weight and experience a high malnutrition rate.

Unfortunately, low appetite is a common symptom for many people with ALS. While appetite-stimulating medications are often used, incorporating calorie-dense foods can also be helpful. This doesn't mean fast food and highly processed items. While those are high in calories, they are low in nutrition.

Examples of higher-calorie foods that also offer some nutrients include:

• Nuts, seeds, or nut and seed butter
• Olive oil
• Milkshakes or protein shakes
• Nutritional shakes designed to support malnutrition and weight gain
• Homemade dips, spreads, and soups
• Coconut milk
• Avocados
• Butter
• Cream cheese
• Gravy

Encouraging people with ALS to eat frequent small meals and snacks instead of fewer large meals each day can also help optimize their energy intake.

Hydration

Water is essential for life and is the most important beverage for hydration for everyone. Maintaining fluid levels is important for people with ALS. If someone has dysphagia and cannot tolerate drinking water, however, thicker liquids like shakes, smoothies, and soups are good alternatives to incorporate water and help provide some hydration. Water-rich fruits and vegetables can also be incorporated into blended recipes.

Vitamins

There is no standard vitamin regimen for people with ALS. However, it's generally recommended to include a multivitamin with minerals that provides 100% of daily needs, in addition to a balanced diet. For individuals with dysphagia, liquid or dissolvable multivitamins are better options. Speak with your healthcare provider or dietitian before adding any new supplements.

Foods to Avoid

The best diet pattern for people with ALS comprises a balance of nutrient-dense, high-calorie foods like the ones listed above. This will help provide the nutrition needed to slow weight and muscle loss and support immune and overall health.

Ultra-processed convenience items and fast foods should be minimized with ALS; these foods are high in calories but are generally low in nutrition.

Furthermore, certain foods should be avoided with ALS because they are unsafe, especially among individuals with dysphagia. Potentially unsafe foods to avoid with ALS include:

• Spicy or acidic foods
• Sticky, hard, or chewy foods
• Thin liquids
• Thick foods

The best way to know whether a food is safe for an ALS diet is to speak with your healthcare provider.

Ketogenic Diet and ALS

The ketogenic, or keto, diet is high in fat, moderate in protein, and low in carbohydrates. It has been successfully used in clinical settings to help manage neurological conditions, specifically epilepsy (a seizure disorder) in children.

However, the evidence for keto diets with ALS is limited and has predominantly been studied in animals. One such study found that mice fed a keto diet experienced significantly enhanced motor performance, which the authors thought might have been because of the diet's ability to help preserve neurons in their brains.

More research is needed on the keto diet and ALS in humans to know whether it is effective and how it is best conducted.

Feeding Tubes

People with ALS who cannot consume enough food orally may need a feeding tube. Gastrostomy (PEG) tubes are surgically placed and feed prescribed nutritional formulas directly into the stomach. This provides long-term nutrition that exceeds baseline nutrition needs and may be used to supplement a diet or as a sole source of nutrition. It has been established as a safe nutrition therapy method for many people with ALS.

Summary

ALS is a progressive neurodegenerative disease with many symptoms that vary among individuals. ALS cannot be cured, but it can be helped by a diet adequate in nutrition. It's essential for caregivers to understand which foods are helpful and safe for someone with ALS to eat and which are best to avoid based on symptoms and nutritional content. Always work closely with your healthcare provider and dietitian to ensure adequate nutrition.