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Chewing With MG Weakness
As the weakness in my mouth and lips became progressively worse, eating became almost impossible. Chewing was always difficult and swallowing was a pain.
To help myself chew, I would prop my chin on my right fist and place my elbow on the table. I would then use my fist to push my jaw up so I could successfully chew my food.
How do you help yourself eat food when the weakness is at its worst? What has or has not worked for you when trying to chew and eat?
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9 Replies
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I have had to put both elbows on the table and put the heels of my hands under my ears above the jawline. It’s a lot of extra work, but holding my jaw and moving the rest of my head was just too bizarre.
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When my chewing and swallowing are at their worst, I’ve found bananas to be the easiest food to eat. Otherwise, I defer to nutrition drinks like Boost and Ugain. I’m looking forward to hearing what suggestions others may have.
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I found that if I ground up food and mixed it with gravy or barbeque sauce, then I was able to swallow it down. Also, I found thick juices like Nectar were easily swallowed.
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I’ve migrated to only a select few soft foods and, like Mike, nutrition drinks (OWYN, Soylent, Atkins, Boost) — mostly just drinks since they always go down easily. And I always have a large iced orange juice. The cold seems to help my swallowing.
When I eat, I pay attention to what I am doing. And I alternate swallowing a (soft) food with drinking something.
I sometimes miss some foods that require vigorous chewing. But a few episodes of choking were very persuasive.
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Have any of you tried myofascial release (mfr)? Because of my difficulties swallowing, I was referred to a speech/swallow therapist who does mfr on the muscles involved in chewing/swallowing every two weeks. This allows me to swallow as well as move my tongue enough to move food down my esophagus instead of up into my nose. MFR has kept me from having to increase my medications and keeps me going until the next ivig.
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I was asked to explain a bit more about mfr. My therapist trained under John Barnes who has refined the technique which is a manual therapy that releases restrictions in the muscles that causes tightness or dysfunction. Often when I try to swallow, I feel like all my muscles are like a chunk of cement. My therapist has me lie down in a darkened room in order to relax. She then uses her hands to apply pressure on a muscle and slowly relaxes the fascia which are fibers around our muscles that can constrict and feel like steel bands. Slowly she applies a stretch that sinks into the fascia, separates one from another until they release and their is no more restriction. Each stretch lasts about 5 minutes. My therapist works on whatever area I am having the most trouble with at the time. Sometimes she works on my neck and at other times she works inside my mouth to release my palate or my jaw or the base of my tongue. I know it sounds gross to have someone work inside your mouth but it is such a relief after it is done. I walk into the session with food going up my nose when I swallow and I leave the session with food going in the right direction. She also has performed the technique on the muscles that affect my breathing.
You might ask if this is really effective. I am a teacher who regularly works 60 hours a week. I have ivig every four weeks and swallow therapy (mfr) every two weeks. My students can tell the difference when I return to class from swallow therapy. My therapist has also taught me some techniques I can do on myself when mg allows me to.
There is one caveat, however. There are good therapists and there are other therapists who may have been trained in the technique but don’t have the “touch” and are only going through the motions.
I hope this helps -
I lost a bunch of weight because of this and I would just try to eat more frequently. What used to take me 5-10 minutes to eat took 30 minutes or more and it was exhausting. I also tried to eat things that were easier and started doing protein shakes again. Cutting food up smaller, taking smaller bites, taking sips of water more frequently while eating etc. I am lucky to have since put back on the weight after a successful thymectomy.
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In the past 5 years, I have had my throat dilated twice. I ended up this last time, to find out I had an infection in my esophagus. I was constantly clearing my throat and coughing. So, after 21 days of meds, the coughing and throat clearing hasn’t gone away. Needless to say, swallowing is getting very difficult. They took a chest x-ray, and told me that I have hyperinflation of the lungs and respiratory effort. Whatever that means. So, I go see another doctor for this on Tuesday, and go for a swallow study on Thursday. It just seems to be a never ending process. That’s why they have revolving doors on the clinics!!
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Usually I would eat softer foods that I could crush against the roof of my mouth such as broiled or grilled fish, mashed potatoes etc. When I’m on my Vyvgart trtmnt cycles there is no problem with it. However, when a problem does arise such as eating steak or other tougher foods I too tend to use my hand to manipulate my jaw.
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