March is National Nutrition Month and for people with ALS, maintaining proper nutrition is essential for feeling better and living longer. In fact, better nourished people with the disease live up to three times longer than those who are malnourished. This month, The ALS Association is featuring important information and resources related to nutrition, meal enjoyment, caloric intake and more.
The ideal goal in maintaining adequate nutrition is to provide enough calories to meet a person’s energy requirements on a daily basis. Maintaining a balanced diet while developing a plan to assess and monitor nutritional needs allows a person to adjust their diet to maximize nutritional benefit. Choosing select categories of foods, focusing on specific consistencies, and learning tips regarding safer swallowing can all help to maintain nutrition and mealtime enjoyment. In addition, availability of alternative feeding routes enables people to meet nutritional requirements, even as their ALS progresses or their metabolic requirements change.
Adequate Nutrition and Feeding Tubes in ALS
At the University of Vermont, Rup Tandan, M.D. has studied the role of nutrition in ALS. Dr. Tandan’s work demonstrates that caloric intake diminishes as patients progress in the disease, while weakened muscles can increase the body’s demand for calories as changes occur in muscle mass and strength. Studies suggest that maintaining adequate nutrition can help people with ALS to live longer. Dr. Tandan studied survival in patients who came to the clinic and found that those who were better nourished lived up to three times longer than those who were malnourished. A special article related to ALS practice parameters appearing in the journal Neurology in 2009 recommends consideration of enteral nutrition via Percutaneous Endoscopic Gastrostomy (PEG) to stabilize body weight and to prolong survival in individuals with ALS. The purpose of a PEG is to feed those who cannot swallow.
Weakened muscles resulting from ALS can make it difficult for a person to eat enough to meet their nutritional needs. A well-balanced diet is essential for maintaining muscle and supporting the respiratory and immune systems. Loss of weight and strength are results of the body breaking down muscles and fats if adequate nutrition, including calories, protein, fluids vitamins and minerals, is not maintained. Fatigue, common in ALS, can present a barrier to preparing or eating a well-balanced diet. Difficulty with hand motor coordination may increase time required to prepare or consume foods. Chewing foods and swallowing may become difficult, and swallowing can even present the risk of aspirating food or fluids into the trachea and lungs.
In addition to consuming calories, fluids and appropriate nutrients, meal time provides an opportunity to socialize with family and friends. Challenges causing excessive time to complete meals or anxiety regarding potential swallowing issues, coughing or choking can erode the enjoyment of sharing time with family and friends. Fortunately, modifying the diet, food preparation or food consumption can help ensure adequate nutrition and the opportunity to continue sharing the mealtime experience. A speech therapist can conduct an evaluation of swallowing and recommend appropriate food choices, consistencies and techniques for safer swallowing.
For many persons experiencing significant or unsafe swallowing issues, feeding tubes provide a viable option to maintain adequate nutrition. Sue Johansan, RD, a dietary expert associated with The ALS Association Multidisciplinary Certified Center ℠ at the University of Vermont, states a feeding tube or PEG, “takes away the anxiety associated with not being able to eat safely, or facing significant weight loss.” Johansan said, “Placement of a PEG tube removes a huge burden around extended time devoted to eating, particularly easing the stress of extended feeding time for caregivers.” People who have had a feeding tube placed often report it’s an easy way to get nutrition, fluids and medications without having to worry about choking.
Understanding what a feeding tube is, why it is recommended, and how it works is the first step in gathering information as you consider the features and benefits of a feeding tube in your strategic health care plan. Log on to this month’s ALS Association Care Services Webinar on March 25 at 2 pm Eastern Time to learn more about Nutrition in ALS. Additional information regarding nutrition can be obtained from your physician or ALS health care team. Your local ALS Association chapter can provide educational resources and referrals to ALS Association Certified Centers℠.