For many people, eating and drinking are one of the pleasures they enjoy in life. But for people with problems swallowing, including people with amyotrophic lateral sclerosis or ALS, eating can become a chore or even a frightening experience as the risk of choking increases. For patients with ALS, a feeding tube can often improve quality of life by improving nutrition and eliminating the risk of choking.
ALS, also known as Lou Gehrig’s Disease, is a neuromuscular condition that gradually causes the muscles in the body to stop working as the signals from the brain no longer get to the intended muscle tissue. ALS affects all the muscles in the body, including the muscles in the face, mouth, and tongue. As the muscles in the face lose their ability to function, patients who have ALS develop dysphagia, which is difficulty swallowing.
How ALS causes choking
Weak muscles in the face and jaw may cause problems with chewing which result in food pieces that are too large when they are swallowed. Weakness in the tongue muscles makes moving food around in the mouth more difficult, which also interferes with chewing. Weak muscles in the mouth and tongue also have a hard time moving food to the back of mouth and the swallowing reflex may be weaker and harder to trigger. In addition, the muscles that work to close the voice box may react more slowly or not at all, allowing food or liquids to go down the “wrong way” into the lungs resulting in choking.
What is a feeding tube?
Feeding tubes are one product medical science has developed to help keep patients from choking and ensure they are getting enough nutrients and water. For short-term use, a narrow plastic tube can be inserted into the nose and passed through the esophagus to the stomach. For long-term use, such as with ALS, the feeding tube is inserted through the wall of the abdomen or belly directly into the stomach. This allows food, water, and medication to be given directly to the stomach without going through the mouth.
How feeding tubes help
Some patients put off getting a feeding tube because they believe they will lose the ability to eat by mouth. They also worry about the tube being visible under their clothing, and they are concerned about not being able to participate in family meals. In reality, only a few inches of the tube are visible outside the belly, and that part of the tube can be taped down so it will not show under clothing. The feeding tube adds a second way to provide nutrition to the stomach but does not affect the patient’s ability to eat by mouth. Patients with feeding tubes can continue to eat by mouth as long as it is safe for them to do so. And even after it is no longer safe to swallow full meals, most can continue to enjoy the flavors of tiny amounts of their favorite foods.
For patients with ALS, many doctors recommend getting a feeding tube soon after difficulty swallowing begins. The tube may not be needed right away, but most patients recover from the surgery to insert the tube more quickly early in the progression of the disease.
Another important consideration is the need to provide adequate nutrition to the body. By definition, ALS causes muscles to weaken. But muscles that are not receiving the food supply they need will weaken faster than muscles that are getting plenty of food. Patients who have difficulty swallowing often lose weight and struggle with feelings of hunger. A feeding tube can significantly improve quality of life by helping the patient maintain a healthy weight through good nutrition without the risk of choking at every meal.
Sources:
MDA/ALS News Magazine
The ALS Newsletter
National Institute on Deafness and Other Communication Disorders
The Oral Cancer Foundation