Lessons learned from the dysphagia symptoms that come with my ALS

 

Swallowing. It’s such a simple thing for most to do! But swallowing can also be a scary maneuver, especially when it turns into an ALS symptom called dysphagia. I began experiencing it about four years following my initial ALS diagnosis. Since I’ve lived with swallowing issues for over a decade now, I’m sharing a few tips and the lessons I’ve learned within that time.

In my column “When ALS Becomes a Hard Act to Swallow,” I describe my first days of dysphagia.  I wrote about calmly sipping coffee one morning till I suddenly felt the hot liquid traveling straight down into my lungs. Luckily, a few minutes of nasty gagging, coughing, and gasping for air saved me from having to dial up my local EMTs. A follow-up visit to my ALS clinic confirmed the diagnosis.

With my form of dysphagia, I can chew and swallow normal foods, but I have to add a powdered thickener to all my liquids.

Too much powder

In restaurants, I used to feel embarrassed about having to drink a thickened beverage and invented various ways to avoid drawing attention to myself. One of my early strategies was to order a cup of coffee and stir in the powder from a repurposed pill bottle that I carried in my purse. But I soon realized that thickening my coffee at the table and drinking it with a straw actually drew way too many stares from nearby diners.

To add to my frustration, the pill bottle once popped open inside my purse, coating everything with a yucky, sticky powder. It was obvious I needed a better way to prevent such an unfortunate incident, as well as strengthen my self-confidence.

Now, I follow the simple (and much more logical) method of bringing my premixed drink in a kid-size sports bottle with a built-in straw. The bottle is small and inconspicuous, and the restaurant staff doesn’t mind. I sit and sip with an air of confidence. A funny thing happened when I looked around the room; people were so self-absorbed in conversations or typing on their phones that no one was paying any attention to me.

Focus and strength

By far, one of the most important lessons I’ve learned from having dysphagia is the interconnectedness of our bodies. Let me explain.

Swallowing, for me, has become a maneuver best done with absolute focus and good posture. I’m careful to minimize distractions while eating, such as reading, watching TV, or having conversations.

Conversations? Yup. I follow a personal rule of never talking while eating. Well, it’s not quite that severe, but I do make sure I chew and swallow completely before answering someone’s question. I can no longer park half-chewed food in my cheek to chat-and-eat.

It also helps that if a meal includes lots of conversations, I take smaller bites of food or focus on the discussion entirely, and take my leftovers home in a box.

Practicing good sitting posture while eating and drinking helps prevent further swallowing issues. The best way to keep myself from slumping and slouching is to strengthen my back, neck, and abdominal muscles, which validates the morning and evening exercises I do each day. I also use a strategically placed pillow to help support my back.

Finally, I’ve learned to adjust and adapt, and I’m always ready to move on to the next solution.

Although our ALS symptoms may vary from one patient to another, we all share the same wish of finding the best way we can continue to live our lives. And I know we can learn to live well while we live with ALS

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Dagmar Munn
ALS and Wellness Blog

 

“Take the time today to love yourself. You deserve it."

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A version of this post first appeared as my column on the ALS News Today website.