Bluntly put, without a feeding tube, the process of living with ALS changes to the process of dying from it. For some people this is fine. Some people find that their ALS is progressing so rapidly that they would benefit from a feeding tube for only a short time before total paralysis and respiratory failure occur. Others decide that they do not want, cannot accept, cannot afford, cannot deal with life with ALS. Many, if not most of us, declare very early on that we don't want a feeding tube or ventilator.
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 be
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 large majority of people with
ALS report that getting a feeding tube was a good decision and that they would recommend it.
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 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.
When choking first begins it is time to have a swallow study done. You will be given various textures of food to
chew and swallow. The food is mixed with tasteless white goop so that as you swallow, all the stages of swallowing
can be seen on X-ray. A therapist can then see how bad your swallow is and recommend ways to make eating safer; chin
down to swallow, thickened liquids, double swallow each bite, blenderizing meats.
Even if your swallow study shows minimal swallowing problems, it is time to begin considering if you will use a
feeding tube. ALS will progress and swallowing will become hazardous. There really is no point in waiting. Caring
for an unused feeding tube is a simple matter of a quick wash of the stoma with soap and water and putting a few
ounces of water down it daily. Many people have trouble swallowing pills when swallowing problems first start.
Crushing them and putting them through the tube makes life easier. When you can no longer feed yourself, a can of
formula is a time saver. Breakfast from a can really helps shorten the time and effort of getting you up in the
morning. And you can continue to eat normally until that becomes unsafe. Many people begin by using the feeding tube
for quick meals and supplemental feedings. Later the tube is the main source of food and eating is for
When to get a feeding tube is generally thought of as being determined by the onset of swallowing problems.
While that is true, the degree of breathing problems is also very important in determining when to have a feeding
tube put in. The usual recommendation is to have the feeding tube put in when your breathing capacity falls to
around 50%. Even though you may not need the feeding tube for food and water yet, putting the tube in early greatly
reduces problems. A breathing crisis during the procedure is unlikely and you will be all around healthier if it is
done before you have trouble eating and drinking.
Problems are more likely if the older PEG procedure is used to place the feeding tube. Placing a feeding tube using the PEG procedure when breathing
problems are advanced is complicated by difficulty keeping the patient well oxygenated while under anesthesia and,
if intubation and a vent are needed, it may be difficult to get off the vent afterward. Another problem with
delaying feeding tube placement happens as the diaphragm, the muscle that stretches across the bottom of the rib
cage, weakens, allowing the stomach to move upward under the edge of the rib cage. That makes positioning the
feeding tube through the abdomen into the stomach more difficult. Poor nutrition is debilitating making the
procedure harder on the patient and increasing the risk of respiratory problems as well as infection.
The feeding tube can be put in much later using the newer PRG or RIG procedure. Because the placement position is determined using X-ray technology rather than endoscopy, anesthesia isn't needed so breathing is less a problem. This procedure is only done by a trained Radiologist and that limits the availability of the procedure.