Managing challenges with chewing and swallowing

There are a few ways these types of MG symptoms can manifest, and an important one to be aware of is choking.⁴ This may sometimes be connected to issues swallowing, which Leanne says is a complicated function that involves multiple tasks occurring in only seconds, including a significant amount of muscle and neural function.

Vanetta says choking happens to her sporadically and it can be hard to pinpoint the cause, but there are a few triggers she has identified. “I try to take my oral medication with something thicker, like orange juice or apple juice, because I’ve noticed thinner liquids have made me choke more,” Vanetta explained. She also shared a tip an occupational therapist gave her, which was to wrap her medication in a piece of cheese or bread if drinking water by itself is leading to choking. This was helpful to Vanetta, but be sure to check with your healthcare team on whether that tip would make sense for you, as everyone’s symptoms and triggers are different.

Additionally, if swallowing pills is a recurring challenge for you, Dr. Nagar suggests asking your doctor about switching your medication to a liquid suspension or syrup, if available, that may be easier to swallow.

Alexis has learned that French fries tend to trigger choking for him. He also knows if he's going to order steak at a restaurant, it has to be cooked at a temperature that’s tender enough for him to chew safely. Consider making a list of foods you know are triggers for you so you can easily avoid them when picking meals. Plenty of MG-friendly recipes exist that include foods that may be easier to chew and swallow, which you may find helpful if you experience these symptoms. Take the MG Let’s Cook recipe finder quiz to find an MG-friendly recipe that may be right for you!

Managing challenges with talking

Speech disturbance is another MG symptom, according to Leanne. She says this can present as slurred quality of speech, nasally voice or vocal fatigue.

Alexis experienced a flare in his MG symptoms at the dinner table, which started off with choking and later resulted in speech difficulty. He recalls his neck muscles weakening, causing his head to fall over to the point where he was choking. Fortunately, his daughter was there to lift his head up, but he could barely speak, which made it challenging for him to tell her which medication he needed. So today, Alexis has simpler, shorthand labels on his medications (like the first letter of the long brand name) so he can more easily communicate in the event of an emergency if his speech is affected. “It was a very humbling experience,” he reflected.

Dr. Nagar noted the anxiety that can come with these types of symptoms. “It’s a very scary thought, that inability to talk and swallow. That in and of itself becomes a hugely anxious moment, and it can cascade with emotional stress,” she said. If you’re dealing with these feelings, these stress management tips from an MG community member may be helpful.

Vanetta mentioned the value of letting yourself rest when you need it. “I don’t think we realize how much we don’t rest our voice throughout the day,” she said. “Just set an alarm or a reminder to tell yourself, ‘Okay, lie down and be quiet for a second.’” Dr. Nagar calls these “vocal naps” and encourages them as well, in order to rest the vocal cords.

Leanne emphasizes that managing these symptoms comes down to each person’s unique experience. “Everyone is an individual, so it’s important to learn your body and what specific MG symptoms affect you,” she said. A few general tips she shared are to stay educated on MG as a condition, manage stress to the best of your ability and monitor symptoms daily.

Communicating with your healthcare team, workplace and loved ones

Always keep your doctor in the loop about how your symptoms are evolving and impacting your life. Something you share with them might lead to a conversation about adjusting your treatment plan or perhaps a referral to a specialist. Leanne says a speech-language pathologist, for instance, can work with a person whose speech or voice has been affected by MG to facilitate easier communication. “The therapy a speech-language pathologist would provide to a person with MG would be symptom-driven,” she explained. “Treatments for voice difficulties may also include techniques to improve clarity of speech or compensatory strategies.”

MG symptoms related to talking, chewing and swallowing may feel particularly difficult to navigate in work and social situations. Alexis and Vanetta suggest being transparent about MG in the workplace, as they have both experienced being symptomatic at their jobs. “I’ve never been shy to discuss it,” Alexis explained. “I encourage people to have these conversations, because if you need reasonable accommodations, you could have somebody in your corner advocating for you.” Learn more about everyday accessibility with MG and what you can request.

Being up front about your MG symptoms at social gatherings may be helpful, too. Vanetta shared, “It comes back to being open and okay with letting people know, ‘If I sound kind of funny, this is why.’” She also suggested that parents living with MG communicate these challenges to their children, and mentioned how she has done this with her own daughter. “We’ve always had open conversations about the fact that Mommy has MG,” Vanetta explained. “When I’m having a hard time speaking or she can’t understand me, she’ll say, ‘Do you want to write it down?’ Or she’ll grab my phone and text me. She gets it.”

Symptom tracking

Since MG requires long-term treatment, it’s important to have a symptom-tracking method that helps you discuss progress with your healthcare team over time. Leanne says presenting a symptom tracker can provide valuable insight, and that the Myasthenia Gravis Activities of Daily Living (MG-ADL) scale is a tool the MG community can use. The MG-ADL scale helps identify the impact MG has on your daily life by assessing the severity of your symptoms.⁵ Since many doctors use the MG-ADL scale to measure symptoms as well, sharing your total score with them may enable you to communicate more clearly about your symptoms. The tool includes eight daily activities related to common MG symptoms (including talking, chewing and swallowing), each of which is measured on a scale of zero to three, with a score of zero representing normal function and a score of three representing the greatest severity of symptoms.⁵ The total score can range from zero to 24 points—in general, the lower the score, the less one’s daily activities may be impacted.⁵

Symptom tracking can be a great way to monitor progress toward treatment goals. For example, you could use the MG-ADL scale to track your progress toward minimal symptom expression (MSE), which is defined as a total score of zero or one on the MG-ADL scale. Alexis and Vanetta both noted the importance of tracking symptoms regularly and using whatever tools they have on hand to document what’s happening. For example, Alexis takes selfies on his smartphone when he’s not feeling well, so he can visually show his doctor how those symptoms affect him, even if he’s having a “good day” during his actual visit.

Similarly, Vanetta sends herself text messages to note when she’s feeling symptomatic. “Every time I feel something, I’ll text myself,” she explained. “Then I’ll go back through the text messages and see if there’s a pattern.” Both Alexis and Vanetta’s approaches allow for easy time-stamping, which may be helpful to share with doctors so they can understand when certain symptoms affect you most.

At the end of the day, Alexis seeks to look for silver linings in his experiences. “I think, ‘How can we turn this into a learning?’” he shared. “You may have been in a bad situation, but it’s the key learnings that help you be proactive in the future.”

For more learnings and tips to work with your healthcare team on symptoms related to talking, chewing and swallowing, download the discussion guide below—made in partnership with Dr. Nagar and Leanne!