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Maintaining Adequate Nutrition: A Continuing Challenge in ALS

By Cynthia Knoche

Maintaining Adequate Nutrition: A Continuing Challenge in ALS

March is National Nutrition Month! As the nation’s food and nutrition experts, registered dietitians and nutritionists are healthcare experts dedicated to advancing the nutritional status and health of people living with ALS in communities nationwide.  For those with ALS, proper nutrition is critical in sustaining weight to prolong and maintain quality of life.

The goal in maintaining adequate nutrition is to consume enough calories to meet an individual’s daily energy needs.   For those diagnosed with ALS, choosing  the right foods with the  appropriate consistencies, while employing tips for safer swallowing, can help to maintain nutrition and mealtime enjoyment.  In addition, availability of alternate feeding options such as a feeding tube, can help people meet nutritional needs as ALS progresses or their metabolic requirements change.

Weakened muscles resulting from ALS can make it difficult for a person to eat enough to meet their nutritional needs.  Difficulty with hand or limb coordination may become a barrier to adequate nutrition as it may increase time required to prepare or consume foods.  Chewing and swallowing food can become challenging, and there is also the risk of aspirating foods or liquids into the windpipe and lungs, potentially leading to pneumonia.  Fatigue, constipation, or lack of appetite may also contribute to the inability to eat typical meals. 

Studies by Rup Tandan, M.D. at the University of Vermont ALS Certified Treatment Center Of Excellenceâ„ , demonstrated that caloric intake diminishes in ALS patients as the disease progresses, while weakened muscles can actually increase the body’s demand for calories as changes occur in muscle mass and strength.  In addition, Edward J. Karsarskis, M.D., Ph.D., Medical Director of the University Kentucky ALS Multidisciplinary Center, and Chief of Neurology Service, Lexington, KY Veterans Administration Medical Center, led a multi-center nutritional research study resulting in the ability to determine total daily energy requirements of ALS patients.  Predictive equations developed during the study are useful in identifying patients unable to meet their daily energy requirements from oral nutrition alone, and may provide a basis for placement of a gastrostomy feeding tube.

The journal Neurology published a special article related to ALS Practice Parameters that recognized the value of enteral nutrition via a percutaneous endoscopic gastrostomy (PEG) or feeding tube in stabilizing weight and prolonging life.  A feeding tube can provide an alternate option to maintaining nutrition and provide a route for the administration of necessary fluids and medications.  Feeding tubes do not have to limit mobility; a low-profile feeding tube such as the MIC-KEY™ or AMT Mini One Button gastrostomy tube lies flush with the skin and is easily concealed under clothing.

Mealtime is often the single time families come together to discuss daily events and share in each other’s company.  Emily Plowman, Ph.D., C.C.C.-S.L.P., at the University of South Florida ALS Certified Treatment Center Of Excellence, highlighted the fact that a gastrostomy tube does not necessarily preclude an individual from eating by mouth; adding it can play a role in preventing nutrition-related weight loss and further decline in muscle mass.   University of Illinois, Chicago ALS Certified Treatment Center of Excellence nutrition expert, Meenakshi Wadhwa, M.S., R.D., L.D.N., noted decreased anxiety occurs in people with ALS and family members after feeding tubes are placed, Wadhwa stated, “It takes the pressure off of constant concerns about swallowing safely and getting enough calories.”  People using a feeding tube often report it’s easier to get adequate calories and protein, fluids and medications without having to worry about choking.  For those considering enteral nutrition, early placement prior to significant weight loss maximizes benefits.

Understanding what a feeding tube is, why it is recommended, and how it works is the first step in evaluating the value of a feeding tube in an individual’s strategic healthcare plan.  Additional information regarding nutrition can be obtained from your physician, dietitian or ALS health care team.  Your local ALS Association chapter can provide educational resources and a referral to an ALS Association Certified Treatment Center of Excellence.

Additional Information:

Estimating daily energy expenditure in individuals with amyotrophic lateral sclerosis
Am J Clin Nutr. 2014 Apr;99(4):792-803. doi: 10.3945/ajcn.113.069997. Epub 2014 Feb 12.

Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review). Neurology October 13, 2009 vol. 73 no. 15 1218-1226.

Nutrition and Feeding Tube Placement for People with ALS: Best Practice in Clinical Decision Making
http://www.dysphagiacafe.com/2014/10/23/nutrition-and-feeding-tube-placement-for-people-with-als-best-practice-in-clinical-decision-making/

Safe Swallowing for Pals; What I need to know and why it matters.
http://nssrlab.org/wp-content/uploads/2014/07/Swallowing-Booklet-web-Word-2013-format_2.pdf

FYI- Information about Feeding Tubes
http://www.alsa.org/als-care/resources/publications-videos/factsheets/feeding-tubes.html

FYI-High Calorie and easy to Chew Recipes
http://www.alsa.org/als-care/resources/publications-videos/factsheets/recipes.html

Find your local ALS Association Chapter:
http://www.alsa.org/community/services.html?service_type=chapters

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