ALS From Both Sides, ALS Patient Care
ALS From Both Sides
Care of an ALS Patient
By Diane Huberty, Retired RN, Certified Neuro Nurse
...and ALS Patient

Swallowing: A Risky Business

Remember the old drinking toast "Over the lips and past the gums, look out stomach, here it comes!" A fun drinking salute but misguided. It isn't the stomach that needs to be on the lookout, it is the lungs that are at risk if anything goes wrong! Swallowing is a coordination of effort by a number of sensory and motor nerves in a series of reflexes, and a missed step has that food or drink headed for the lungs.

The swallowing process has three stages. The oral phase includes chewing the food using the tongue to move the food around and saliva moistening the food. Then the tongue lifts up in front and pushes the food to the back of the mouth. All this is voluntary movement and voluntary movement is what is affected by ALS. Tongue movement, chewing, and the ability to close the lips are all affected.


Usually however, the second phase of swallowing is affected first. The second phase of swallowing is a series of reflex movements we have no control over. Once the series is triggered by the food entering the top of the throat, the food moves down whether or not all the reflexes are in working order. The soft palate moves up to block food from going up into nasal passages. (Everyone who has burst out laughing mid-swallow of a liquid knows that this reflex doesn't provide a strong seal!) The epiglottis begins the most important part of the swallow; keeping the food or drink from entering the trachea and lungs. The epiglottis is like a trap door that is reflexively triggered to drop down over the tracheal opening. Just below it, the vocal cords squeeze together to form an even stronger barrier. With nowhere else to go, the food or drink is pushed down into the esophagus by the muscles of the pharynx, not pulled by gravity. The esophageal phase of swallowing moves the food or drink on down into the stomach.

All these reflexes require motor responses from cranial nerves, including V, VII, IX, X and XII. The cranial nerve centers are all in the brain stem, the connection of the brain to the spinal cord. Some anatomical wit thought the brain stem looked like the bulb of a plant, so we have the term "bulbar" to refer to anything going on in the brain stem, especially involving the cranial nerves. With ALS we may have bulbar onset. In addition to early signs of swallowing problems beginning with a simple cough when swallowing, a change in the tone and quality of the voice is often noted. Even without bulbar onset, ALS progresses to include bulbar problems. 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 inevitable and potentially fatal problem happens as the muscles needed to swallow safely weaken, and food and liquids are aspirated into the lungs causing pneumonia. When the swallowing muscles are no longer working it is possible to swallow without coughing because the cough and gag reflexes are gone. This is called Silent Aspiration. The food or liquids go into the lungs with no cough to signal a problem.

As swallowing worsens, health and 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 significant. If you persist in trying to get all your food and fluids by mouth, you will develop pneumonia from the food getting into your lungs. This is not a "Maybe." This is inevitable. A feeding tube will allow you to get optimal nutrition, fluids and medications, and allow you to continue enjoying those things you can safely swallow as long as possible.

When choking first begins it is time to have a swallow study done. It is unlikely that an early swallow study will indicate that you must quit eating and drinking. Instead, it will show which swallowing muscles are causing the problem and the therapist will give instructions on how to swallow more safely, such as double swallowing, head position, etc. 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.

People with even minimal swallowing problems should never eat when home alone. Alcoholic drinks increase the risk of choking and should be enjoyed after a meal, not before. Reduce distractions at meal times. Talking while eating may be sociable, but minimize your part in it.

There aren't any specific rules about what foods to eat, just suggestions. It really is a matter of trial and error to see what foods go down easily. Most people find anything that is crumbly or has dry crumbs, such as chips, cake, cookies, dry toast, corn bread, or hard or crusty bread, etc. cause coughing. But dunking these in liquids, or buttering them, or mixing with ice cream may get them to a safe level for swallowing. Don't try taking a drink after putting these foods in your mouth to soften them. The drink can get to the back of the mouth quickly and trigger a swallow before the food is chewed enough to go down. Drown the food first! Any type of sauce or gravy will help.

Foods that need chewing are a problem not only when the muscles for chewing are weak, but also because the chewing tends to trigger a swallow before the food is well chewed. Meats are especially bad for this reason. Small bites are helpful but I personally find tiny mouthfuls to be unsatisfying! Grinding the meats with a baby food grinder or a blender can help especially with gravy added. For myself, I find hamburger to be a problem. I just can't chew it down enough to get rid of the little pieces that stick in my throat like crumbs!

Raw vegetables are usually the first thing to be taken off the menu, and even steamed or boiled vegetables have to be overcooked to the point where a chef would be mortified to serve them. Casseroles go down well if moist and are a good place to add vegetables and meats. Pasta or rice is easier if it is overcooked too and served with a sauce. Melted cheese and soft breads have to be taken in smaller bites. Even a person without swallowing problems can choke if a mouthful of those get stuck on the way down.

Apples, like vegetables, have to be cooked, but applesauce is to keep on hand. Maybe it is just me, but I find grapes and watermelon to be tricky. One bite and the juice is triggering a swallow before I am ready!

Of course anything that is blenderized or even liquefied is easier to swallow. Smoothies are great but may be difficult to suck through a straw and are better if thicker and using a spoon. No raw eggs added! While balanced nutrition is important, ALS requires a lot of calories, especially when breathing becomes even a minor problem. ALS patients seem to do better if they can maintain their weight, so calories are good. Protein is important and protein powders can be added to smoothies. Egg custard goes down without chewing and is a good source of protein. A lot of calories can be added with milk and ice cream, but that can cause thick phlegm that is hard to cough up.

Although our swallowing problems are strictly a muscle problem, triggering the sensory system can improve swallowing by stimulating a stronger reflex by whatever muscles are still working although weak. That is especially true for liquids. Liquids are the hardest to swallow safely! They go down so quickly that the weakened swallowing process isn't ready for it. Hot or cold foods and drinks are better than room temperature. A hot or cold drink, especially one with a strong flavor goes down best. Thicker liquids such as orange juice or using a tasteless thickener such as Thick-It will help. The body needs plain water too. It is absorbed without having to go through the entire digestive process to filter out flavorings and doesn't add to the work of the liver and kidneys. A feeding tube makes getting enough water easier.

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