CHARLOTTE, NC: From the moment we are born three things come naturally; breathing, sucking and swallowing. Swallowing is such a common thing that most people do it about 600 times a day and don’t even think about it. That is until that someone contracts Amyotrophic Lateral Sclerosis or ALS and dysphagia.
Nearly 80 percent of ALS patients think about how, when and where to swallow.
Such an exercise can be exhausting when a patient must consider what he or she can eat or drink, the size and texture of the food and the rate at which they can chew and actually consume their meals. The medical term for this problem is called dysphagia. It is caused by a weakening of the tongue and soft palate combined with weak throat muscles.
When we swallow, weak throat muscles can send food or drink toward the lungs rather than the stomach often resulting in coughing, personal assistance from others or, worst case scenario, a call to EMT first responders.
Thus dysphagia may seem to be a “tongue in cheek” affliction but it’s not.
As ALS progresses, dysphagia – difficulty from swallowing, plus an increase in saliva, are also part of the process.
In the most severe situations, a feeding tube can be implanted into a patient’s stomach which basically eliminates taking in food by mouth. As one might conclude, such a decision can be traumatic for an ALS patient.
There are some solutions to assist the swallowing process, but as with all things ALS there is a learning curve involved. Furthermore, often the answer is more cumbersome than the original problem.
One such way to counter swallowing difficulties is using commercial thickeners. Sounds simple, until you try it. Before long your kitchen can quickly be transformed into a chemistry lab.
It works by adding a spoonful or so of a thickener into your food which sounds easy enough until you realize how different foods and beverages have different consistencies and textures. When adding a thickener to a drink, the amount of the required powder can vary considerably between beverages as well as the strength of the individual thickening agent.
Just because you are dealing with a liquid does not confine thickeners to drinks. They can also be used in soup. One good tip regarding soup is if you have added too much thickener and created something that looks like mud, just throw in a few ice cubes and things will return to normal.
Finding ways to live with ALS and Dysphagia is a trial and error process.
For the most part, a good thing about thickeners is they typically do not alter the taste of food and drink – except perhaps for water now and then. If you add your favorite drink enhancer to the blend, voila, it will adjust the taste.
Not back to water necessarily but at least to something more potable.
Adding thickener to soft drinks, beer and other carbonated quaffs can sometimes present a problem reminiscent of dropping a couple of Alka Seltzers being into a full glass. Suddenly “plop, plop, fizz, fizz can cause an eruption resembling Mt. Vesuvius.
As for food, cutting it into smaller pieces often helps considerably. And choose dishes you can stab with a fork or eat with a spoon. It may take a little longer but it will generally be far more pleasant than gagging your way through a meal.
Chewing can become difficult because of the added weakness in the mouth often makes eating a tiresome exercise. Try eating smaller portions and asking for seconds if you are still hungry.
Find an even keel when dining out
Another ALS problem encountered when dining out is table height. The average person rarely considers the height of a table or chair so long as the combination of the two is compatible. With ALS, patients quickly learn that differences in heights, and believe it or not, every restaurant is different, can play a significant role in whether the person with ALS can function and/or swallow without difficulty.
For many people, dining out can become a hassle, especially if there is a coughing incident or two during the meal. Family members and friends will typically check on you, but they are accustomed to the process and don’t panic.
Not so with other diners who can be distracted and become concerned with the ALS patient’s plight. It can also be embarrassing for the person with ALS who has created an unwanted “scene” with the possibility of bringing attention to the table.
Living with ALS and dysphagia is just another of the ongoing adjustments that are part of the affliction. Every day brings new challenges and each individual must adapt in their own way to make it work.
As for me, at this point I always get “choked up” when I hear that it’s time for the “swallows to return to Capistrano.”
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor is an award-winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is also the founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up