Eating & Drinking

When eating first becomes difficult, it is time to first modify the diet for safety, then talk about a feeding tube, to look at videos, and discuss the procedure.

Most PALS prefer a button, ultimately, but many start with a "dangler" and later switch.

The first step when eating becomes difficult is to avoid irritating foods that can cause coughs or choking, or mucus buildup. And if someone is being fed due to loss of hand function, an oyster fork, small spoon (down to baby size, sorry), and large bore bendy straw are all worth trying.

When avoiding certain foods is not enough, blending smooth foods into soups, smoothies, and other easy-to-consume blends is next. A mid-level Ninja blender often works well, though more expensive Vitamix models are extensively promoted for this purpose.

Below I've listed some smooth foods — some to blend together, some to eat, depending on tastes and how it goes-- you can add any liquid to thin any combination of these, like water, oatmilk, or apple juice.

Applesauce
Cake without decoration or nuts
Stewed/canned fruit, no rough skin or pineapple
Watermelon, no seeds, possibly other melons like cantaloupe
Canned hash, Vienna sausages
Puddings without added fruit or other drop-ins
Smooth or soaked cookies (butter cookies, not grainy like oatmeal)
Soaked cornbread, white bread, rolls
Mashed or cut potatoes, no skin
Nut butters (cashew, peanut, almond, etc.) that are "creamy" type
Ripe avocado
Oat milk (I use Oatly)
Ice cream
Scrambled eggs
Soft boiled eggs
Over easy eggs
Tender meat like poultry with no skin
Fish with no bones or rough skin
Well-cooked squash, no skin or seeds
Mashed veggies like turnips, inside of broccoli stalks
Easy veggies like canned beets, carrots, potatoes, and spinach, green beans,
Add butter, sour cream, yogurt, jelly, light sauces, to lots of things. For example, make potatoes or veggies easier to process with light sauce or butter
Use cornstarch, flour (caution with whole-grain), or mashed potato flakes as a thickener
Avoid commercial thickeners -- they only thin your wallet and often have added chemicals

Avoid:
Raw produce, skins, rice, coarse grains, kernels, legumes, bits, fibers, food that’s two different textures like ice cream w/ drop-ins
Acidic food like tomatoes, citrus, vinegars, vinaigrettes, grapefruit
Cooked veggies or fruit where eliminating seeds/skin/fibers really isn't possible, e.g. eggplant, pineapple
Unexpectedly spicy (or variable spice) such as peppers, hot sauce, tabasco, hot BBQ sauces

With a modified diet, some PALS may never need to progress to a tube. But if you need one for nutrition at any point, that's the time to reassess wishes over the long term. Like any intervention, no one has to get a tube if they don't want one. But if they want to keep on living, most find that it's not the hassle or eyesore that they envisioned.

For the most flexibility in using blended real food or formula in the tube, ask the radiologist to place the largest "French" tube diameter suitable for your anatomy.

Feeding tube placement with respiratory impairment
Feeding tube or "PEG" insertion (which studies now suggest is best done in Radiology as a "RIG" for most PALS even though it's still called a PEG generically) had formerly been regarded risky in PALS with FVC < 50%.

If someone tries to take you to surgery instead of radiology, point to guidelines that recommend RIG — only with certain existing GI problems should surgery be needed.

But not all ALS clinics' parent hospitals may have good interventional radiology units. It may be worth driving a ways for more experience in placing RIGs in respiratory impairment.

Studies conducted over the past two decades have shown that PEG placement can be safely performed, even in PALS with severe respiratory insufficiency. Some modern masks feature openings for gastrostomy devices and allow PEG insertion under NIV. Therefore, intubation, which carries the risk that the PALS cannot be taken off a ventilator afterwards, can be avoided.

One study showed that PEG was safe in high-risk PALS who underwent insertion with reduced sedation and using their BiPAP during the procedure, in a semi-reclined position. Using a Cough Assist just before the procedure if someone has been using it already, has also been reported beneficial.

So for PALS with low FVC who need a tube, if at all possible, BiPAP should be started first, and a feeding tube should be inserted later, after stabilization of the respiratory situation under BiPAP.

Tube formula? Real food?
P/CALS who want to maintain pre-ALS nutritional status, which in turn reduces progression and GI symptoms, have two choices that often overlap:

A "whole food" tube formula that is a liquid placed into the tube, or a powder mixed with water. The best formulae are made from real food with minimal chemical processing. The worst, of which there are several, are corn syrup or pea protein-based — lacking any resemblance to pre-ALS food. The latter can prompt or worsen diabetes, compromise nutrition, cause diarrhea/constipation/cramps, compromise fluid /electrolyte balance, etc.

At this writing, the tube formula I recommend is called Whole Story, based on the ingredient list. Others in the "better" category that are often used include Liquid Hope, Kate Farms, and Real Food Blends.

Insurance may or may not pay for alternative formulas such as these. Sometimes a doctor can write a letter of medical necessity or submit documentation that the PALS "failed" [did not do well with] the cheaper, less nutritious products such as Ensure, IsoSource, and Jevity.

Commercial products can be replaced or supplemented/alternated with real-food blending. Ninja and VitaMix blenders are often used to liquefy a variety of foods. Many foods that the CALS or family is having can be turned into liquid once, of course, some liquid is added to ensure the appropriate consistency and everything is blended smooth. Resources such as the Oley Foundation and Facebook groups offer tips and menus to do this.