How do you counsel newly diagnosed patients with ALS on dietary recommendations?

I counsel all my newly diagnosed ALS patients about the importance of weight maintenance. Weight loss is an established risk factor for accelerated ALS progression according to several studies (Janse van Mantgem et al., PMID 32576612 and Jawaid et al., PMID 20500116). Therefore, we always aim to maintain weight perhaps towards the upper limits of normal BMI (25). It should be emphasized that despite the negative prognostic significance of major weight loss in ALS, a high-calorie diet was NOT sho...

While I understand that a high-calorie diet may have some positive effects, I have tended to encourage maintaining weight (unless very obese, in which case the obesity will cause problems in breathing, transfers, and care) without promoting any specific diet. I suggest people not worry about "healthy diets" that are designed to lose weight but allow themselves to eat things that they enjoy. Our dietician provides them with more intelligent suggestions.

All patients see our dietitian every visit at 3-month intervals. The initial focus is on adequate nutrition, especially if a patient is losing weight. We do not recommend specific foods or supplements if they are maintaining weight. If a patient asks about supplements, we review the literature (e.g., ALS Untangled, or other sources), but I do not recommend any.

Previously, I partnered with our dietician to counsel our patients focusing on safe swallowing and higher caloric intake. Based on the recent study results, we additionally ask the patient's usual intake of carbohydrates, type of food items, frequency, and quantity. I recommend patients increase the intake frequency of high glycemic index food items such as potatoes, bread, pasta, and rice. I provide the summary of our recent study results along with a caution that this has not yet been confirme...