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Imagine getting the chance to eat your favorite meal, but on your first bite, you struggle to chew, and your eyes suddenly water as the food gets stuck in your throat as you swallow. Struggles with chewing and swallowing are common experiences for patients with myasthenia gravis (MG). I have had these struggles for years, so it’s always an adventure trying to figure out how to have a healthy, enjoyable diet while focusing on foods I can chew and swallow successfully. 

MG causes muscle weakness, which includes facial muscles and those involved in eating. Obviously, this can be challenging and even dangerous for patients with MG, so I’ve learned it’s important to be deliberate about choosing foods and also mindful of chewing and swallowing as I am eating a meal.

Eating is not something patients with MG can take for granted. I think about the texture, moisture content, and thickness of food. Thicker food is easier to get down. I have the most trouble with dry, crumbly food. Those make me aspirate the most. I also have gastroparesis caused by postural orthostatic tachycardia syndrome (POTS), so it takes extra work to find foods I can digest. This makes my diet pretty limited. 

Read about HCP resources for MG

A couple of years ago, I worked with a speech therapy team to talk about strategies for swallowing and which foods they suggest to focus on. They showed me how to tuck my chin in when I’m struggling to get food or medication down and other good advice. They also gave me exercises to help strengthen and train my swallowing muscles.

Patients with MG need to know they aren’t alone with some of their more severe symptoms, and there are experts like speech therapists who can help them. Eating has been one of the most challenging functions for me for years, but I’m always looking for accessible food options. 

To get more fruits and vegetables in my system, I started eating baby food. Surprisingly, some of them are pretty tasty. They are easy to hold and easy to digest.

I try to stick to foods like mashed potatoes, avocado, smoothies, soup, etc., because there isn’t a lot of chewing. Many people take chewing for granted, but some patients with MG get very fatigued trying to chew some food. Because of my overall fatigue, I cannot cook for myself. My husband does the cooking. He is very aware of my special diet, and we’re always looking for recipe ideas that include food he likes and food I won’t struggle to eat. I am sure other patients with MG require the help of their caregivers when they are planning their diet as well.

One of my goals in the new year is to find accessible ways to cook and plan meals that fit my strict diet and fatigue limitations. I am considering trying to make crockpot recipes using an Instant Pot. My diet is actually not as healthy as it was before I was diagnosed with MG. Some of my favorite foods, like beans, salads, and raw fruit are just too challenging to swallow and digest. But I can still eat some of my other favorite foods, like sushi. It’s all about planning and thinking about how my symptoms are each day because they can be variable.