8 Things That Help Me Cope With Dysphagia

Dysphagia is scary to me. It causes me to dramatically alter eating behaviors. It is perhaps the most unnerving aspect of my multi-systemic condition, myotonic muscular dystrophy. But over the years, I’ve learned a few things that help me cope better.

If you’re reading this, you may understand dysphagia to mean swallowing difficulties, but dysphagia is different for each person. To better understand the different stages of the condition, I recommend listening to this webinar. I was fortunate to interview a noted expert on dysphagia – Michael Groher, PhD – who wrote the textbook on dysphagia.

Years ago, this condition mysteriously presented itself as intermittent coughing fits during meals. Imagine you’re in a restaurant with friends and/or a loved one…eating…drinking…talking…and wham! You start coughing. For me, there was never a chunk of meat stuck in my throat (I’m a vegetarian). As you cough, your anxiety builds, and you get embarrassed and seek comfort. Perhaps a swallow of water may help? At times that wasn’t enough, and I’d have to run to the bathroom or outside for fresh air.

This phase lasted awhile, and I’m not sure at what point I was able to identify what was happening. But eventually I did and began altering some of my behaviors. I learned about these behaviors over time. I’ve met with several health care practitioners who have dysphagia as part of their purview. Generally, these practitioners are speech therapists. I find this somewhat ironic. There are medical specialists for each body system – gastroenterologist, neurologist, cardiologist, pulmonologist – but with dysphagia you see someone who helps with speech. If you’re really in dire straits, you might get a feeding tube, and that’s when you’d see a medical specialist – a gastroenterologist.

In addition to the advice offered in the webinar, here are behavior modifications that have helped me cope.

1. Don’t talk while eating.

It sounds simple, but it’s probably a lifelong habit for many of us. But we can learn new behaviors, and this change of habit has helped me tremendously.

I’ve developed a practice of mindful eating. For me, this means being aware of each bite, how long it needs to be chewed, and whether there’s enough saliva, or water, to start the swallow. Mindful eating also allows me to savor the flavor of the food. If I’m not eating alone, I can still listen to someone else talk while I’m eating. I can also take breaks to talk, making sure there is no food in my mouth and the previous swallow is complete.

2. Always have a full glass of water available.

My swallowing difficulties start with moving food around my mouth. Sometimes small pieces, like seeds or bean skins, get stuck in my mouth, and I can’t maneuver my tongue to get to it. Sipping water and swishing it around can help before I swallow. If there is a coughing incident, sometimes water can help, but other times it can exacerbate the situation.

3. Eat small mouthfuls of food.

It’s difficult to fight the inclination when you’re hungry and want to shove a heaping bite of something delicious into your mouth. I’ve gotten into trouble with having too much food in my mouth and not being able to swallow all of it. it’s safer to keep it small.

4. Eat slowly.

Since I now eat multiple small meals throughout the day, and eat slowly, it can feel like I’m spending most of my day eating. This would be a difficult routine to practice if I were still working a full-time job. But I’m not, so eating at a slower pace allows me to be more mindful about the process and what’s in my mouth. I usually read during my meals. There is no audio or visual stimuli competing for my attention while I eat – just my food and a magazine.

5. Eat softer foods.

I’ve been a vegetarian for many years and have always preferred cooked rather than raw vegetables. This has served me well for transitioning to softer foods. Hummus, mashed potatoes, scrambled eggs, and oatmeal are staples in my diet. I eat many other foods, but when traveling, these four foods are usually easy to find.

Now my dysphagia has the added challenge of chewing difficulty. My jaw muscles are weakened and my entire bite has shifted, so I can only chew on one side of my mouth, so I need soft food not only for easier swallowing.

I am grateful for a spouse who is a wonderful cook and makes good use of kitchen blenders. Together we contributed to a community cookbook with recipes for people with dysphagia.

6. Assess my energy level and eat foods aligned with my energy level.

When I’ve had a good night’s sleep and my body seems to be working well, I generally have more energy for chewing and swallowing. If it was a difficult night and I’m weakened, my diet and food textures need to change. This is when I’ll opt for a smoothie or thickened soup.

7. Get enough nutrient supply before social eating events.

When I’ll be attending a social event where there’s food, or a sit-down dinner, I try to be extra careful during the day to have a well-balanced diet. There may be little for me to safely eat at the social event due to lack of vegetarian options, healthy options, and soft, easy-to-swallow options. There have been times where some dish looks soft and it seems to fit the bill until I have it in my mouth and realize there are hidden nut pieces. Or a vegetable just isn’t cooked enough to my liking and I spend 10 minutes trying to grind it down but end up covertly discarding it.

8. Bring my own foods.

Now I just cover my tracks with my own stash of food. In some situations, this can be socially acceptable, in others you may feel uncomfortable. But a girl has got to eat. One of the best investments I’ve made is a folding freezer lunch bag (Velcro strips to close) and stainless steel food containers. My popular go-to foods traveling with me include hummus, avocado mash, and blueberries.

Dysphagia is more than a nuisance, but with trial-and-error experimentation and careful planning, I’ve been able to acclimate. Thankfully, I still enjoy many foods and am able to attend social events.

Follow this journey on Glass Half Full.

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