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ALS Worldwide
February 03, 2015

Feeding Tube Decisions

"I was diagnosed with Bulbar ALS on July 26, 2012. As months went by, I lost my ability to speak and began having trouble swallowing and drinking thin liquids. When it became impossible for me to swallow my medications, the answer was to get a feeding tube, which I had put in on March 11, 2014.

We crush my pills and add them to water and give them to me through my feeding tube. Because it is difficult to drink water, I am able to stay hydrated through my feeding tube. I am still able to eat food, but can supplement with Ensure through my feeding tube to make sure I get my necessary caloric intake."

Janine Gerke
Wisconsin, USA

Periodic swallow tests at an ALS/MND Clinic can help identify when mouth and throat musculature is failing and that it's time for supplementary support to avoid further weight loss. Feeding tube options, and whether to have one inserted, are personal decisions each patient must make with the support of her or his family, friends and physicians. However, patients are welcomed to contact ALS Worldwide if they have further questions or would like to share their experience with a feeding tube so that others may benefit from their knowledge. Maintaining weight and ingesting proper nutritional balance are two of the biggest struggles faced by patients, and a feeding tube can greatly aid both. 

Massachusetts General Hospital's ALS Clinic and other clinicians feel that a feeding tube can reduce exhaustion and stress due to shortness of breath and difficulty swallowing; reduce the risks of choking and pneumonia; help stabilize or recover weight; improve the quality of life; lead to longer life span; manage symptoms more successfully. Most importantly, favorite foods can still be consumed orally and enjoyed, leaving the tube to handle medications and nutritional supplements.

Feeding tubes are inserted, through what is known as minimally invasive surgery (MIS), into the stomach through the abdomen and held in place inside the stomach. The external portion of the tube, approximately 6 inches long, has a cap or a three-way valve (stopcock) to prevent leakage. 

The Mic-Key® feeding tube by Halyard is an excellent, low-profile option because it lies flush against the skin; the tube detaches when not in use, and a cap keeps the opening closed. As a result, this tube is unobtrusive and easily concealed. Halyard's website has a page specifically for ALS patients with helpful information, including photos of the Mic-Key and a traditional PEG tube.

The negative emotional component attached to a feeding tube often stops those with ALS from agreeing to have the procedure. However, the positive impact far outweighs the negative. The surgical procedure itself is fairly simple and recovery quick for those who act sooner rather later while their bodies are still strong. There is minimal pain or discomfort at the site of the insertion. Best of all, energy can then be used for eating foods that are most enjoyable.

If you are unsure whether or not the time is right, consider the following questions:  Is your nutrition insufficient? Does eating lead to fatigue, loss of energy and weakness? Are you experiencing notable weight loss and/or dehydration?  Do you have difficulty swallowing?  Does choking occur frequently?  Is chewing and swallowing challenging? If you answered Yes to two or more of these questions, then perhaps it's time to take action.

For suggestions on ways to boost calories and maintain weight while considering a feeding tube, review the ALS Worldwide article on Healthy Diet and Nutrition.