ALS can start with swallowing problems or swallowing problems can occur later. Choking on
food or liquids begins intermittently and progresses to inevitable. The immediately life
threatening problem is choking badly enough to block the airway. A slower but potentially fatal
problem happens as the muscles needed to swallow safely weaken, and food and liquids are
aspirated into the lungs causing pneumonia.
Without a feeding tube, the process of living with ALS changes to the process of dying from
it. For some people this is fine. They have decided that they do not want, cannot accept, cannot
afford, cannot deal with life with ALS. That is absolutely your decision to make!
But I can tell you with absolute certainty that a
decision made before the reality of swallowing problems are experienced is far less a decision
than a wish. As with all the decisions to be made in the course of ALS, you simply cannot know
how you will feel until you are at the point where a decision has to be made. That doesn't
mean the issue of a feeding tube can or should be ignored until the decision has to made. A
responsible ALS patient will educate himself or herself about feeding tubes for ALS well in
advance of the need so that an intelligent choice can be made. It is important to note that a
very large majority of people with ALS report that getting a feeding tube was a good decision
and that they would recommend it.
At the same time quality of life deteriorates. Dehydration causes low blood pressure, dry
mouth, and adds to problems with lung congestion and constipation. Meals are long and drawn out
from difficulty chewing, exhaustion, and frightening choking episodes. Both patient and
caregiver dread meal times and fear that each choking episode may be the last. Food choices
become limited, and eventually even blenderized food is dangerous. Weight loss is
There is no need to experience all the fears, frustrations, and misery of swallowing
problems. In the past, most ALS patients lumped having a feeding tube in the same category as
going on a ventilator. Today most patients recognize that a feeding tube is a simple,
inexpensive, minimal care way to add months, if not years, to their life and quality of life. It
reduces stress for everyone, can be used only for supplemental feedings, pills, and extra water
and only gradually stepped up to full use when swallowing is not safe at all. And it can be
removed at any time you don't want to continue with it.