Navigating Nutrition for People with ALS

With all of the changes that come with ALS, how people with the disease continue to provide nourishment for their bodies and maintain a healthy diet is an important consideration. In recognition of National Nutrition Month, we asked some common questions about nutrition and ALS to Nicole Dirnbeck, MA, RD/LD, a clinical dietitian at St. Louis University Hospital and ALS dietitian for SLUCare.


What do people with ALS need to know about nutrition?

Eating habits may change with disease progression and though a difficult subject to address, it is important to be aware of this. I believe in relaxed eating patterns and encouraging patients to eat what they enjoy while continuing to eat a well-balanced diet while they are able to.

What challenges do people with ALS face when maintaining nutrition? What are some solutions?

Some common challenges I hear from patients include difficulty swallowing and chewing, fatigue, early satiety and loss of appetite.  Some tips I will recommend include: smaller, more frequent meals or snacks, addition of high calorie/protein foods and condiments to meals, and choosing foods that are appealing to the patient. If intake of meals and snacks reduces significantly, I will recommend the addition of oral nutrition supplements such as Boost or Ensure to the diet. Most importantly, I work closely with the Speech Therapist, who identifies the safest texture of foods to consume and provide safe chewing and swallowing techniques. With those recommendations I can provide nutrition tips and recipes to help maximize nutrition.

What is your advice for people with ALS and the changes they face with eating/feeding as the disease progresses?

As previously mentioned, many patients will experience changes in how they eat as the disease progresses. It is smart to be mindful and aware of these changes. If patients are able to, work with a Speech Therapist and Dietitian to help identify any problems, and determine the safest possible method for eating or energy intake. Patients may require modified textures, special swallowing strategies recommended by the Speech Therapist, or may have to consider a feeding tube to obtain adequate nutrients. I would advise patients to be open to suggestions made to help manage some of the changes they may experience.

For those going through the transition of using a feeding tube, what advice do you have for them?

A lot of patients will initially look at a feeding tube as negative; in addition to going under a procedure to have it placed, patients seem to fear it means they can never eat again, or won’t be able to enjoy foods by mouth. One thing I always stress with patients on the fence with proceeding with a feeding tube is that it removes a lot of the pressure involved with eating. Eating may become stressful with disease progression. Patients may worry about how they will get adequate calories in at meal time in order to maintain their weight. Patients are often faced with fatigue, loss of appetite or difficulty chewing/swallowing, resulting in severe weight loss and malnutrition. The feeding tube allows patients to be fed with a complete formula, meeting nutritional and hydration needs and making weight maintenance or gain much easier. Registered dietitians can help customize a nutrition prescription for the patient. This way if they are still able to eat by mouth, but need supplemental tube feeds we can account for this.

How does someone with ALS avoid drastic weight loss/malnutrition?

I typically recommend avoiding calorie restriction or dieting early on in our visits. In early stages of the disease, patients will express interest in weight loss or dieting, thinking if they lose some weight, the disease will have less impact on activity or movement. I always recommend focusing on a general healthy diet, incorporating all food groups, including foods the patient truly enjoys. I also recommend monitoring weight and appetite. If a patient notices a decline in appetite or declining weight, a dietitian can help find ideas to help optimize nutrition with the meals and snacks they are able to consume.

How can caregivers/loved ones help with nutritional needs?

Encouragement, assistance with feedings as necessary, helping with meal prep as able and helping limit distractions or background noise at meal time are a few recommendations I have made to caregivers. If the patient has a feeding tube, it helps if a caregiver or loved one is trained on how to administer feedings and provide routine care to the feeding tube.

If you or someone you know has ALS, or, if you’d like to learn more about how you can support families battling the disease, please visit our website at www.alsa-stl.org.

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