ALS Experts: Keep the Weight On

People with amyotrophic lateral sclerosis (ALS) should go ahead and eat foods high in fat and calories, but they also need to eat healthy foods as well, say experts on ALS nutrition who participated in an MDA-sponsored webinar on January 11, 2011.

The experts addressed a variety of topics in the hourlong presentation, including why nutrition is important in ALS; what steps people with ALS can take to ensure good nutrition; what types of foods and drink are appropriate; how to prepare food and drink for easier consumption; feeding tubes; and current research on the subject.

The doctors and nutritionists who participated in the webinar were Anne-Marie Wills, a current MDA grantee and researcher with the MDA/ALS Clinic at Massachusetts General Hospital in Boston; Terry Heiman-Patterson, a former MDA grantee and director of the MDA/ALS Center of Hope at Drexel University College of Medicine in Philadelphia; and Jane Hubbard, a bionutritionist who works with Wills at Mass General.

Why nutrition is important in ALS

“People with ALS tend to lose weight at a dramatic rate,” Wills said, adding that “nutritional status and weight are very important in determining survival.” She presented studies showing that people who are slightly overweight at time of diagnosis, and people who maintain their weight through the course of the disease, live longer than those who start out thinner or lose weight as ALS progresses.

There are several reasons why people with ALS tend to lose weight, Wills said. They often have difficulty swallowing or get tired while eating. Research suggests that they can become “hypermetabolic,” burning calories at a faster rate than normal, at some stages of the disease process. And cells in their intestines may be affected by the disease, making it harder for them to extract energy and nutrients from food.

People affected by ALS burn about 15 percent more calories than expected, and therefore need more calories than unaffected people to maintain their weight, even though they typically are much less active, Wills said.

How to maintain weight

Hubbard described maintaining weight as a “balancing act” and advised people with ALS to work with a dietician or nutritionist to determine their caloric needs as well as what types of foods they should be eating. She advised patients to keep close track of their weight and to contact their care provider if they lose more than 4 pounds.

Although human studies on nutrition in ALS have not yet determined the optimal diet, mouse studies suggest that one high in fat, as well as one high in nutrition-dense foods like fruits and vegetables, is best. High-protein diets and protein supplements have generally been found to be unhelpful in slowing disease progression, although they may be appropriate in certain instances.

To get more calories into the diet, Hubbard had several suggestions. These included using whole milk instead of skim, making milkshakes and smoothies with ice cream and instant breakfast mixes, adding butter, cream and oil to meals, using extra mayonnaise, gravy and salad dressings, and adding commercial nutritional supplements like Boost Plus or Ensure Plus.

The experts also offered several suggestions on how to deal with the swallowing difficulties so common in ALS. They advised consulting a speech therapist to learn some techniques to make swallowing easier, consuming small, frequent, nutritionally dense meals (six per day), and staying hydrated. Thin liquids may need to be thickened and thick ones thinned to make swallowing easier.

Feeding tubes

The panelists recommended that people with ALS consider getting a feeding tube fairly early on in the course of the disease, even while they still are able to eat and drink by mouth. The feeding tube can be used to supplement the diet when a person with ALS is unable to consume by mouth all the calories needed to maintain weight.

Although definitive studies have not been done about the optimal timing of feeding tube placement, Wills said the studies that have been done show that those who receive feeding tubes before their breathing is seriously compromised do better than those who wait until later in the disease process. Those whose respiratory function is severely affected have a higher rate of complications with feeding tube insertion, Wills said.

Studies under way

About Clinical Trials

A clinical trial is a test, in humans, of an experimental treatment. Although it's possible that benefit may be derived from participating in a clinical trial, it's also possible that no benefit, or even harm, may occur. MDA has no ability to influence who is chosen to participate in a clinical trial. To learn more, see Understanding Clinical Trials and Being a Co-Adventurer, which is about neuromuscular disease clinical trials.

Heiman-Patterson discussed several studies that are under way about nutrition in ALS and she encouraged people to participate, if at all possible. Among the studies being done is one that examines the effect on ALS of a ketogenic diet (an extremely high-fat, low-carbohydrate regimen that has been found to help control epileptic seizures in some cases).

Other ongoing studies include one on early treatment of ALS using nutrition and noninvasive positive pressure ventilation, and one led by Wills and her colleagues at Mass General on the safety and tolerability of high-fat, high-calorie diets in ALS. This last study is funded by MDA and is being conducted through the MDA/ALS Clinical Research Network. (See MDA's ALS Clinical Research Network: Streamlining the Search for a Cure.)

For more information

More information on the clinical trials mentioned in this article, including criteria for participation, can be found by going to www.clinicaltrials.gov and entering the following identifying numbers:

For the ketogenic diet study: NCT01035710

For the early intervention with nutrition and breathing study: NCT00116558

For the high-fat, high-calorie trial utilizing the MDA/ALS clinical research network: NCT00983983

The entire webinar can be viewed at: http://www.mda.org/services/webinar.html

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