Trouble Eating and Speaking: Center Stage of My Bulbar Issues

Shawna Barnes avatar

by Shawna Barnes |

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Bulba what?

Bulbar muscle group symptoms include losing the ability to speak — every man’s dream come true for his spouse, if ya believe all the comics, memes, and jokes. And it is something my husband and I joke about, mostly because it’s one of the more frustrating symptoms of my myasthenia gravis (MG). But not the only one.

Trouble eating

My first experience with bulbar weakness involved eating: coughing while I was doing it, feeling “thick tongued,” my mouth getting tired after chewing gum, food feeling like it’s getting stuck in the back of my throat just behind the uvula (the little ball thingy in the back of your throat), and choking on my own spit. These were all symptoms I started experiencing shortly after my leg weakness began.

My primary care doctor with the U.S. Department of Veterans Affairs diagnosed me with dysphagia, or difficulty swallowing, in 2013. But it wasn’t until my official diagnosis of MG in 2018 that all the eating issues were confirmed to be a result of it.

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The eating and dysphagia symptoms were noticed well before my vocal issues.

Trouble speaking

In the beginning of my post-Army journey, I was housebound and had little reason to speak for a prolonged period. Once I started teaching art classes in 2017 and tried my hand at working again in 2019, the effect on my vocal cords became more noticeable.

When I was in a position to be more vocal, the nasal, raspy, laryngitislike quality of my voice would come out. The more I spoke, the less voice I had.

Dysphonia (difficulty speaking) and hypophonia (decrease in voice volume) are two common representations of what it can sound like when the vocal cords of a person with MG are affected. It wasn’t until I tried to run a business and had to talk all the time that this became an issue. Until recently, it had been more of an annoyance.

Double trouble

So what to do when you can’t eat or speak?

Well, the first major flare of being unable to eat helped lead me to a confirmed diagnosis. I lost 10 pounds in less than a week because I couldn’t chew my food; I would choke on it and was aspirating fluid.

Surprisingly to me, I was referred to speech therapy, which helped with various swallowing strategies to reduce the aspiration when I was symptomatic. I also spoke to a nutritionist, who suggested soft foods, which created less fatigue in the muscles of my jaw. This also helped to prevent choking.

The only way to really help the voice issues is to stop talking. My husband and I joke all the time that he knew what he was doing when he married someone as sick as I was. The loss of voice became the poster symptom for my column, “The Whispered Roar,” because I wanted it to be a strength rather than a weakness. It is the most frustrating symptom, but the most empowering as well.

Through trial and error, I have found that drinking cold drinks helps improve voice quality. My inconsistent ability to vocalize has also led me to learn American Sign Language to have an alternate method of communication. It has also shown me various holes in reasonable accommodations for those who cannot speak on the phone and rely on other technology to help them get through the day. It has opened my eyes to the variability of understanding and empathy shown by those in my closest circle.

Bulbar symptoms can look and feel differently for everyone with MG, and they can be scary. It is important that we know our body, that we can articulate and communicate when something just doesn’t feel right, and that we can advocate for our care when needed. And let me tell ya, advocating for your care when you can’t talk is a challenge.

Challenge accepted.


Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.

Comments

TERENCE WILLIAM MILLER avatar

TERENCE WILLIAM MILLER

My MG is located in the bulbar region.
I receive 8 liters of plasma exchange every week, at the hospital. It minimizes the distortion in my voice. When they were giving plasma every two weeks. I was incoherent the end of two week. It is now my 8 year of treatment. Originally my veins were used until they collapsed. Then two lines were places in my chest. After it became infected they installed a titanium port under my right chest. Before plasma 7 other treatments did not work. It is blessing to live in Canada where these treatments are free.

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Shawna Barnes avatar

Shawna Barnes

Thank you for sharing Terence. I haven't had plasma exchange yet. If IVIG stops working for me I believe that is next in the progression of my treatment plan. I am a Veteran and have access to medical care at our VA facilities. I am lucky as well in that I don't have to fight the insurance company to agree to my treatments.

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CathyF avatar

CathyF

Exactly the issue with my husband's mg, bulbar weakness. Quite scary. No weakness in arms and legs. No droopy eyelids or double vision. The inability to chew, swallow, or talk landed my husband in the ICU. Choking and aspirating saliva led to pneumonia. After retuning from the hospital, we had to puree all food. Shawna, you are sophisticated to use American Sign Language to communicate. We used a notebook and pen.

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Shawna Barnes avatar

Shawna Barnes

Thank you for sharing Cathy. I don't know about sophistication but thank you! haha MG has just given my husband and I an excuse to learn a second language that not only helps us but allows us to communicate with a larger population. I've been able to use the ASL to communicate with an associate at Lowes, for example. It's fun to learn it together.

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