From the Clinic

Marsha Davis, the registered dietitian for Johns Hopkins’ ALS Clinic, is expert in the nutritional needs of ALS patients, as well as in ways to manage their changes in eating style. At Hopkins for the past 13 years, she has a B.S. degree in clinical dietetics and nutrition from the University of Pittsburgh.

We know that early in ALS, nutritional problems are few. Difficulties surface more in advanced disease. But there are specific issues in intermediate ALS. Could you address them?

Most patients I see then have some dysphasia—swallowing trouble—and, accordingly, some problem with weight loss. And the added effort it takes to move—or eat—is, of course, tiring. So providing adequate calories is something we address.

Then, psychologically, the idea of spending 45 minutes to eat a meal is wearying, not to mention the fact that cooled food or food that’s of modified consistency is less appetizing. It’s no surprise many patients also find themselves with a sluggish appetite.

One obvious help is to make foods easier to eat. Put crackers in your soup so you don’t have to struggle to move them to the back of your mouth. Lubricate things with gravies and sauces. Also, don’t eat so much at one sitting. Smaller, frequent meals will help save energy and boost calories.

And to further slow weight loss?

That’s more straightforward. You beef up food with extra calories. Add cheese to your mashed potatoes and your scrambled eggs. Use half and half instead of milk where you can. Don’t just eat sweet potatoes; make them into a souffle with milk, brown sugar and eggs. Milkshakes, smoothies and nutritional supplements are also a help. One suggestion is to drink them later in the evening so they won’t spoil your appetite for a meal.

Won’t all those liquids cause more energy-consuming bathroom trips?

If you count them as part of your allotted daily fluids, they shouldn’t. On the other hand, some people work so hard at not having to get themselves to the bathroom—they cut their fluids—that they risk dehydration. And constipation. Choosing more canned and cooked fruits, if swallowing is a challenge, should help bring in more fiber. And you might consider commercial fiber-boosting supplements.

Any other tips?

If you’re by yourself, put on a good movie so you won’t notice as much how long it’s taking to eat. Take a walk before a meal. Play pleasant music. Have several friends in to take the focus off of you while you’re eating. Use more seasonings in pureed food than you would otherwise. And use garnishes or attractive table settings to increase eye appeal. You or your support person will find it’s not just an indulgence to make meals enjoyable. It’s a positive step for health.

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