- Researchers say what and how much you eat is important in amyotrophic lateral sclerosis (ALS), because studies show good nutrition has an impact on the disease and may increase survival.
- People affected by ALS tend to lose weight and can become malnourished, not only because food and drink may be hard to swallow, but also because they burn more calories than unaffected people and their intestines may be less efficient at extracting nutrients from food.
- Those who get feeding tubes earlier in the course of the disease tend to do better than those who wait until later.
- Research on certain types of diets and supplements is under way, and people with ALS are encouraged to participate in these studies.
In ALS, there is a clear link between weight and survival.
Studies show that people who are slightly overweight at the 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, said Anne-Marie Wills, an MDA grantee and researcher with the MDA/ALS Clinic at Massachusetts General Hospital in Boston.
Consequently, people with ALS should feel free to eat foods high in fat and calories — but they need to eat healthy foods as well, advised a panel of experts on nutrition in ALS who participated in an MDA-sponsored webinar (online seminar) on Jan. 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.
Doctors and nutritionists who participated in the webinar included Wills; 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, noting that “nutritional status and weight are very important in determining survival.”
There are several reasons why people with ALS tend to lose weight, Wills said. They may have difficulty swallowing or get tired while eating. Research suggests that at some stages of the disease process, people with ALS can become “hypermetabolic,” burning calories at a faster rate than normal. And, cells in the intestines may be affected by ALS, making it harder for individuals to extract energy and nutrients from food.
People with 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 health care provider if they lose more than four pounds.
Although human studies on nutrition in ALS have not yet determined the optimal diet, mouse studies suggest that a diet 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 ALS disease progression.
To get more calories into the diet, experts suggested:
- use whole milk instead of skim;
- make milkshakes and smoothies with ice cream and instant breakfast mixes;
- add butter, cream and oil to meals;
- use extra mayonnaise, gravy and salad dressings; and
- add commercial nutritional supplements like Boost Plus or Ensure Plus.
If swallowing is becoming a problem, the experts advised consulting a speech therapist to learn some techniques to make swallowing easier; consuming small, frequent, nutritionally dense meals (six per day); and staying well-hydrated. Thin liquids may need to be thickened and thick ones thinned to make swallowing easier.
The panelists recommended that people with ALS consider getting a feeding tube fairly early in the course of the disease, even if they’re still able to eat and drink by mouth. Although they can continue to eat by mouth, they can use the tube to supplement calories as needed.
Although definitive studies have not been done about the optimal timing of feeding tube placement, Wills said it is known that those who receive feeding tubes before their breathing is seriously compromised do better than those who wait until later in the disease process.
ALS nutrition studies under way
Heiman-Patterson discussed several studies that are under way about nutrition in ALS and encouraged people to participate.
One study 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). Another looks at early treatment of ALS using nutrition and noninvasive positive pressure ventilation. Wills and her colleagues at Mass General are studying the safety and tolerability of high-fat, high-calorie diets in ALS, in an investigation funded by MDA and conducted through the MDA/ALS Clinical Research Network.
The MDA nutrition webinar can be viewed on the MDA website.
For more on feeding tubes and nutrition, see It’s Still Eating and Keep Calories Coming, Expert Says, in the September 2006 issue of ALSN, located on this site or through your local MDA office.
More information on the clinical trials mentioned in this article can be found by going to www.clinicaltrials.gov and entering the following identifying numbers:
- Ketogenic diet study: NCT01035710
- Early intervention with nutrition and breathing study: NCT00116558
- High-fat, high-calorie trial utilizing the MDA/ALS Clinical Research Network: NCT00983983