This week is Malnutrition Awareness Week, an opportunity to remind everyone of the role proper nutrition plays in a person’s health and the importance of early detection and treatment of malnutrition. While it is important for everyone to practice good nutrition habits to live a healthy life, for people living with ALS and their caregivers, an early and evolving focus on nutrition is vital.

As ALS progresses, the challenges of maintaining good nutrition as well as avoiding malnutrition change. With the support of caregivers and a multidisciplinary care team, these challenges can be managed to provide both the best nutrition and best quality of life at all stages.

Among the challenges faced by a person living with ALS, maintaining a healthy body weight can be difficult for some. ALS causes hypermetabolism which is the burning of calories faster than normal brought on by the disease. As ALS progresses, the nerves that communicate with the muscles eventually break down, leading to muscle atrophy and weakness in all voluntary muscles. The body works overtime to compensate for this breakdown, which increases energy needs.

”Weight loss is to be expected; do not stress too much about it,” says Marian Leon, RN and Case Manager at the Forbes Norris ALS Research and Treatment Center in San Francisco. If some weight loss begins to occur, it can be managed if a proper diet is maintained.

Because of hypermetabolism, a high-calorie diet is often recommended. As the disease progresses, maintaining caloric intake can be a challenge, as a decreased appetite often occurs. This is often caused by swallowing and chewing difficulties (dysphagia), a physical inability to feed oneself due to limb weakness, dehydration, constipation and overall exhaustion. “It is a process for both the caregiver and the (person with ALS),” says Leon. “Encouragement is okay; do not insist on eating. Small frequent meals can be great.”

If and when getting enough calories to maintain weight and nutrition by mouth becomes too difficult or unsafe, a feeding tube can be considered. A feeding tube provides a reliable way to ensure adequate fluid intake, safety in administering medications, maintaining weight, decreasing fatigue and can provide an overall quality of life improvement.

Having a feeding tube does not mean a person cannot still eat and drink by mouth, a common misconception. The feeding tube simply allows a person with ALS to meet fluid and nutrition goals without the anxiety and fatigue often caused by the eating process. This in turn can make mealtime more enjoyable for everyone, allowing it to remain a social time for family and friends to gather and connect with each other.

While ALS may present many nutritional challenges, proper monitoring by caregivers and healthcare professionals can help to address these issues and develop strategies to avoid malnutrition, allowing a person with ALS to remain an active part of family mealtime. For as we all know, the meal is more than just the food.

For additional information and resources to help address nutritional needs while living with ALS, visit our website HERE. A list of high-calorie and easy-chew recipes is available HERE and tips to help maintain a healthy and nutritious diet can be found HERE.

To learn more about the disease and follow stories about people living with ALS in the community, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.