There is nothing sexy about dysphagia. At best it is an annoyance and embarrassment – coughing up food into countless napkins, clearing your throat with endless “ahems”. At worst it is a life threatening condition – inability to eat manually with dangerous weight loss, or god forbid “aspiration” where food enters your lungs and leads to pneumonia. Dysphagia is a very serious symptom of myositis, and one that we have very personal knowledge of. Click here for a description of dysphagia.
In the spring of 2007, Mo started experiencing mild dysphagia with the onset of his DM. At first it was just him having to swallow more, trying to swallow harder to clear the spit and food at the back of his throat. Then his swallow became more labored, as food started “backing up”. Some foods were nearly impossible for him to swallow without gagging or choking. Mealtimes were taking longer and longer for him to finish his food, and as Mo’s dysphagia increased we virtually had to give up eating out in restaurants. You don’t realize exactly HOW social the act of eating is in our culture until you have dysphagia (we’ll talk more about that later).
In addition to the muscle mass that Mo was losing because of proteins “leaking” from his muscles due to the myositis, Mo’s weight was drastically lowering because of his dysphagia. He simply could not get enough calories because he couldn’t eat enough to compensate for the extra energy it took to eat! Um, hello Catch 22!
Our gastroenterologist sent us into the hospital to get a “modified barium-swallow” performed to find out exactly what the extent of Mo’s swallowing difficulty was. Technicians gave different types of foods (banana, cookie, pudding, etc) coated in a barium liquid so they could see it travel by x-ray as he swallowed! This is an example of that test (this is not Mo, just a YouTube video, but let me tell you the test was fascinating to watch since you could see everything as it was happening in real time!!!).
In healthy people, it takes only 1 swallow to clear food and liquid, but in Mo’s case it was taking him 8-15 tries to fully clear his throat! What we saw in his swallow test was that food was getting caught in a small pocket near his epiglottis, getting spun around in that pool but having a hard time getting all the way down into the esophagus and then stomach (for a pretty good picture of this action click here).
Our doctor immediately had us schedule with a registered dietician, who started Mo on a very aggressive “calorie bulking” diet. The extra calories are what you would expect someone training for an Ironman competition to be needing, as his 2000 calorie diet was ramped up to almost 5000 calories a day! It seemed like Mo was constantly eating. By the time he’d finish a meal (which took a while because of the swallowing issues) it was just about time for him to start another. Mo was watching his protein and calorie intakes like a hawk (yes, more spreadsheets!) and we were introduced to a whole host of dietary supplements!
Here are some of the products that Mo used during the height of his dysphagia:
Juven: a packet of fruit flavored powder that you can add to water, or smoothies. Juven is used to help build new tissue, and contains Revigor (source of HMB), Arginine, and Glutamine. Click here for the Juven website, click here or here to purchase online or find a local retailer.
Benecalorie: a tub of thickly dense calories and protein that you can mix into just about any kind of soft food or spread. Benecalorie is flavor neutral, so you won’t notice the change in taste to the food it is added to so much as the change in texture. You may need to slightly thin foods with water (or better yet, milk) that you add Benecalorie to in order to swallow. Click here for the Benecalorie website, click here or here to purchase online.
Ensure Plus: a nutritional shake meant to help maintain or gain weight. Great part of Ensure Plus is the high protein per bottle, and it’s convenience and portability! These are ready to drink, and although filling, easier to eat than a full steak dinner! Click here for the Ensure website, you can buy Ensure in all drugstores and grocery stores.
100% Whey Protein powder: this is protein powder at it’s best! Add this powder to milk, smoothies, milkshakes, frozen coffee blends, any and all high calorie drink vehicles (it says water, but why not add in extra calories where you can? instead of milk substitute creamers, or half and half, or heavy cream for god’s sake!). It comes in a lot of flavors, Mo liked vanilla the best as he could put it in more things without changing taste too much. We bought our whey powder at GNC, but I’m sure you could buy other brands at health stores, or online. Click here to buy online at GNC.