When ALS Becomes a Hard Act to Swallow

Swallowing. It’s such a simple thing to do! We’re born with the ability to swallow; it happens automatically, and the average person does it approximately 600 times a day. I mean, who actually thinks about swallowing? Well, I do, now that I’ve joined the nearly 80 percent of ALS patients who have to think about how, what, and when to swallow. For us, swallowing has become a maneuver best done with absolute focus and without interruption.

A fish out of water

I didn’t experience any swallowing issues until my fourth year of ALS. The incident turned what used to be a calm drink of water following my morning stretch routine into several minutes of gagging, coughing, and gasping for air. Thinking it all was just a fluke of the moment, I brushed the episode off.

But repeat episodes throughout the week had me worried, and a timely visit to the ALS clinic confirmed that I had dysphagia.

What is dysphagia?

In ALS, dysphagia results from a weakening of the tongue and soft palate in combination with weak muscles of the throat. During the action of swallowing, a slow reaction by the throat muscles can send consumed food or drink hurtling directly toward the lungs rather than to the stomach. Coughing, pats-on-the-back, or getting to meet your local EMTs are often the results.

Depending on the severity of the symptoms, options for ALS patients can include cutting up and chewing smaller pieces of food, changing the food’s consistency by blending it or relying on a pre-mixed formula. In severe cases, surgeons implant a feeding tube (PEG) into the stomach, which can eliminate taking in food by the mouth altogether. Understandably, the decision to have a PEG inserted is an emotional one for many ALS patients.

In my case, I can still chew and swallow normal foods. But I add a powdered thickener to all my liquids.

So, how thick is thick?

Working with commercial thickeners isn’t as simple as tossing in a spoonful or two and stirring it. There’s an art, a learning curve, and as my husband and I discovered, it can transform your kitchen into a science project! The amount of powder required fluctuates widely between beverages, and even the product we use varies in strength from canister to canister.

Plus, I’ll admit that a good part of the learning curve was me having to adjust to drinking a morning cup of “thick coffee.”

Along the way, we did learn a few tips that I’m happy to pass along:

• Thickeners can be used for soups as well, but not during cooking. So, add it in when the soup is in your bowl.
• If you’ve overestimated the amount of powder needed and created a “sludge,” just add ice cubes and stir.
• Thickener in plain water can have an “off” taste. I add a few drops of flavored “drink enhancer” to the mix; it transforms the taste!
• Use caution if adding thickener to colas, beer, or other fizzing beverages — unless you are providing party entertainment! One day, I craved a cold 7UP, but when the powder hit the liquid, everything began bubbling up, over, and onto the counter. It reminded me of those viral videos of kids dropping Mentos into a bottle of Coke, resulting in an instant liquid volcano!

Click here for more helpful tips from the MND Association.

Solving drinking dilemmas when dining out

When heading out and about, I’ve found it convenient to take along my pre-mixed drink in a small sports bottle that has a built-in straw. It’s handy for car trips and at meetings because I blend right in with others who’ve brought along their own bottles of water.

Restaurants have been a bit of a challenge. Rather than put my sports bottle on the table, I hoped I could order a beverage and thicken it right there. The problem was the size of the beverage. Asking for “a small glass of …” just didn’t compute with most waitstaff. Restaurants nowadays seem only to serve drinks in oversized glasses, and when a small glass of juice finally did show up, it was packed full of ice!

The solution was a cup of coffee.

I simply order a coffee and when it arrives, stir in the powder from a repurposed pill bottle that I carry in my purse. No more explaining, frustration, or sports bottles to clean when I get home. I guess learning to like thick coffee paid off!

Living with dysphagia certainly has its challenges — it’s one of many tests that ALS throws our way. But by keeping a positive attitude and learning from each other, I believe we can live well while living with ALS.

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