It’s a bit of an overstatement to say, “you are what you eat,” but there really is quite a bit of truth to it. The fact is, nutrition affects us all, regardless of our age or health status. Throughout our life, what we use to fuel our bodies plays a vital role in our overall physical and emotional wellbeing. And while it is important for everyone to practice good nutrition habits, it is perhaps even more significant for someone affected by a disease like ALS.

ALS presents its own set of nutritional challenges that must be addressed when considering what makes up a healthy diet, and these challenges change as the disease progresses. As we approach the end of National Nutrition Month, we wanted to take a look at some of the many nutritional needs for people living with ALS and how they are sometimes different.

Michelle McDonagh, a registered dietitian with the Medical College of Wisconsin ALS Clinic at Froedtert Hospital in Milwaukee, presented during our webinar titled “Nutritional Considerations in ALS” and provided valuable insights into the unique needs of people living with ALS.

For most people living with ALS, the first nutritional challenge they will face is ensuring they are taking in enough calories to maintain their weight. Studies have shown that for people with the disease, weight loss has a negative impact on quality of life and survival. This is because of something called hypermetabolism, where people burn more calories than normal. “In patients with ALS compared to the general population, even the calories needed at rest are known to be higher,” McDonagh said.

So a high calorie diet is important for people living with ALS, but the type of calories is also important. It has long been understood that a high carbohydrate diet is helpful in maintaining body weight. However, a diet also needs to include sufficient protein to maintain muscle tissue, which can help maintain overall function for as long as possible.

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Many foods high in protein—meat, fish, eggs, cottage cheese, Greek yogurt, nuts and nut butters, seeds, and beans—are also high in macronutrients, which have also been shown to be positively associated with better function per the functional rating scale scores. Nutritional supplements like Ensure or Boost are also high in protein.

Another important nutritional consideration is something that might not include any calories at all. “I like to highlight hydration when I talk about nutrition,” McDonagh said. “(We) tend to lump it all together, nutrition and hydration, but (studies have shown) that survival was twofold longer in the group that had better hydration than the lower hydrated group.” McDonagh also noted that some studies have shown women to be less hydrated than men.

And while the type and amount of calories a person living with ALS consumes is important, how and when they get those calories will change for many as the disease progresses. Some find smaller, more frequent meals or snacks throughout the day can help in getting enough calories to maintain weight. As swallowing becomes more difficult, many will turn to softer foods or pureeing foods, and many at some point will face the decision to have a feeding tube inserted to ensure they are able to get the nutrients they need.

Your ALS care team is always available to help you navigate your individual nutritional needs. For more information about maintaining proper nutrition and ALS, visit our website HERE. Additional resources you might find helpful include:

• Maintaining Good Nutrition with ALS
• Adjusting to Swallowing Changes and Nutritional Management in ALS
• High Calorie and Easy to Chew Recipes
• Swallowing Changes with ALS: 10 Things to Know
• Exploring the Option of a Feeding Tube: 10 Things to Know

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