Food and nutrition are a big deal for those with ALS, or amyotrophic lateral sclerosis. As the disease progresses, appetite declines and eating can become increasingly difficult. Though tube feedings are used to maintain nutrition, patients often do not consume enough calories, leading to weight and muscle mass loss. To increase calorie consumption, physicians may recommend calorie-dense foods that contain a lot of sugar and white flour. Unfortunately, such approaches neglect the nutritional requirements of the motor nerves, brain cells, and mitochondria.

I completely agree that nutrition is a critical factor for anyone who has ALS or any other progressive neurological disorder. I am the director of the Therapeutic Lifestyle Clinic at the Iowa City VA Healthcare system. In this clinic, we help people with neurological, psychiatric, and medical problems use diet and lifestyle to address their health problems.

So what about food for those for with ALS? We know that only 5 to 10% of the risk for ALS is due to a genetic mutation. The other 90 to 95% comes from the interaction between a person’s DNA and the environmental factors they encounter during their life. These factors include dietary choices, toxin exposure, physical activity, social networks, family relationships, and infection history. Though no one can change their DNA, we certainly can address the environmental factors that influence our health. It is possible to shift these factors from disease promoting to health promoting. One of the simplest and most powerful ways to reduce the risk of developing chronic disease is making good food choices.

In our clinics, we recommend a modified Paleo diet that has been structured to maximize the intake of 36 nutrients that science has identified as important for healthy brain and nerve function. We ask patients to completely exclude sugar, white flour, and gluten-containing grains because of the potential for unrecognized gluten sensitivity. These foods are replaced with 6 to 9 cups of vegetables – leafy greens, sulfur rich (cabbage family, onion family, and mushrooms), and deeply pigmented vegetables and berries. The diet also includes 6 to 12 ounces of meat, according to size and gender. I prescribe targeted vitamins, omega-3 fatty acids, and vitamin D for most of the people we see in the Therapeutic Lifestyle Clinic. We encourage choosing organic foods, which lessens the body’s toxic load, and recommend the consumer guides from the Environmental Working Group that list the dirty dozen (most pesticide use) and the clean fifteen (least pesticide use) to prioritize which foods to buy organic and what is safe to buy conventionally. This diet contains plenty of vitamins, minerals, antioxidants, essential fats, and resistant starch (formerly called soluble fiber) and provides nerve cells, brain cells, and mitochondria with the nutrients they need. When people embrace this new way of eating, their neurological problems often stabilize and regress.

Food is just as critical for those with ALS, who should also eat this type of maximally nutrient dense diet, in either the form of the modified Paleo diet or our MCT ketogenic diet. We recommend blenderized food over tube feedings (most of which are high fructose corn syrup plus vitamins). Those with ALS should consult a health-care practitioner who has been trained in functional medicine and can provide personalized recommendations.

I have a passion for nutrition because I have suffered from secondary progressive multiple sclerosis since 2003 and spent 4 years dependent upon a tilt-recline wheelchair. I created a dietary and lifestyle program specifically to support better brain health. In just one year on this new program, I went from needing a zero-gravity recliner (because I was too weak to sit up in a regular chair) to being able to bicycle 18 miles with my family. This transformation changed how I viewed disease and health, how I practice medicine, and the focus of my clinical research.

Today, I study the use of the modified Paleo diet, a ketogenic version of the Paleo diet, in the setting of multiple sclerosis. Ketogenic diets have been used to treat seizure disorders since the 1920s; more recently they have been studied as an intervention for brain cancers, Parkinson’s, cognitive decline, and ALS. Most ketogenic diets utilize butter fat, which the liver converts to ketone bodies. The ketone bodies can be used by mitochondria, the power plant in all of our cells, to generate energy. This diet severely reduces protein and carbohydrate intake — the diet is 90% fat (mostly cream, butter, and eggs) and carbohydrates are limited to 25 grams or less a day (the equivalent of 3 cups of lettuce). I have created a medium chain triglyceride (MCT) ketogenic diet that allows for 60 to 80 grams of carbohydrates and still provides the 36 vitamins, minerals, antioxidants, and essential fats needed by the brain and nerve cells to thrive. This diet is an excellent choice for those with ALS, and has helped so many with neurological and cognitive disorders regain their health and vitality.