Swallowing Difficulties
In MS, the muscles involved in swallowing sometimes stop functioning normally, due to disrupted signals from the brain. Swallowing problems, also called “dysphagia,” increase the risk of food and fluids entering the lungs (“aspiration”), potentially leading to a type of pneumonia called “aspiration pneumonia.” A speech and language pathologist (SLP) is the type of therapist that can be most helpful in dysphagia, examining swallow quality and deciding on therapies and, no less important, the consistencies of foods and fluids that could be the safest during episodes 1,2.
The following are possible swallowing problems in MS and what may be done to cope:
Dry mouth
MS and related medications can contribute to a decrease in the production of saliva, resulting in dry mouth (or “xerostomia”) that makes it hard to swallow. Of note, a lack of saliva also increases the risk of cavities, which in turn can increase the type of systemic inflammation people with MS need to avoid.
The following are some general tips for managing dry mouth naturally:
Stay well-hydrated
Proper hydration is one of the most effective ways to keep the mouth producing saliva and therefore moisture or to compensate for decreased saliva production. Water is a preferred means, and can be ingested as fluid or ice throughout the day. Water consumption is especially important in conditions of fever, significant heat, or exercise that generates sweating, whether or not there is thirst. The average person under usual conditions requires 1 ml per kg per hour, or about eight 8-fluid-ounce (240-ml) glasses per day, with an additional glass for every half hour of intense heat or exercise.
Beyond water, there are beverages formulated with minimal-to-no sugar and added salts (or “electrolytes”) – many known as “sports drinks” – that can be used. A product with a unique angle is Hydrus, associated with a 67% improvement in dry mouth symptoms. Hydrus is formulated with a nanosome technology that enables greater absorption into the body’s cells and organs, which ultimately is most important.
Drinking water during meals can aid chewing and swallowing in cases where dry mouth is a barrier.
Avoid high-salt foods
Salt, primarily the sodium type, increases the need for water to keep the body adequately hydrated, and excessive intake can contribute to dry mouth. Cutting back on salty foods such as chips and other snack foods, processed meat, smoked fish, canned meat and fish, hard and semi-hard cheeses (including those on pizzas), sauces (especially soy), frozen dinners, and some breakfast cereals can help to maintain a moist mouth. Note that foods high in salt are not necessarily salty – when in doubt, check out the food label, and avoid anything that provides more than 140 mg of sodium per serving.
Avoid excessive sugar intake
Like salt, high sugar foods and beverages – including some fruit juices – can be dehydrating and thus trigger dry mouth symptoms. Additionally, high sugar intake can cause inflammation in the body, including through tooth decay.
Avoid caffeine and other diuretic substances
Regular – i.e., not decaffeinated – coffees, teas, colas, and energy drinks can exacerbate dry mouth because they are “diuretic,” meaning they pull fluids out of the body.
Avoid alcohol-containing beverages and other products
Alcohol can be drying to the mouth. In addition to beverages, look out for mouth rinses or mouthwashes that contain alcohol (or peroxide). Of note, natural/herbal versions of these products are often alcohol- and peroxide-free.
Avoid dry foods
Cutting back on dry foods such as chips, crackers, bread, popcorn, rice cakes, and dried bean snacks reduce the amount of saliva required for chewing and swallowing, enabling normal levels to keep the mouth moist.
Consume moist foods
When selecting foods while dealing with dry mouth symptoms, liquid and moist options are considered best. Note that if the additional issue of dysphagia with liquids is involved, it is important to ensure the safest thickness/consistency of liquids consumed.
Naturally liquid foods such as soups, smoothies, and shakes not only go down more easily in the case of dry mouth, but can increase moisture in the mouth and make consumption of other foods less challenging.
The addition of sauce, gravy, cream, mayonnaise, aioli, and butter or plant-based substitutes can also be lubricating.
Soft foods that go well with the above lubricating options include stewed and otherwise tender-cooked meats, poultry, and fish, as well as tofu and other vegan choices; eggs (though hard-boiled yolk can be tricky and may be most safely consumed blended with a lubricating food); semi-fluid dairy such as yogurt, pudding, cottage and ricotta cheeses, natural cheese spreads (e.g., soft goat); hot cereals (“porridges”); bread stuffing/dressing; canned fruits and vegetables in natural juices and fruit compotes; and soft-cooked vegetables. Note that these foods can be made even easier to swallow by pureeing them, especially with natural juices, fluid milk or milky vegan beverages, or broth.
Dental protection
Because dry mouth can increase the risk of bacterial overgrowth and thus infections in the mouth, and because such infections can lead to the type of systemic infections that trigger MS instability, it is important to protect dental health. In addition to good oral hygiene, chewing sugar-free gum, especially that based on “xylitol,” a natural sugar-free sweetener shown in studies to provide a dental advantage. Note that xylitol can sometimes aggravate sensitive digestive systems, e.g., those prone to irritable bowel syndrome (IBS), in which cases a product that also contains some Stevia (to reduce the xylitol amount) may be preferable and no less beneficial 3.
Oral aids
Dry mouth can also be managed by sucking on sugar-free candies throughout the day, preferably not those made with artificial sweeteners. Note that sugar alcohols are natural, and xylitol is particularly good for dental health, but any other than erythritol may cause digestive discomfort in sensitive people if overdone.
In addition, there are oral care products such as Oral7 that provide natural ingredients specifically formulated to help, such as aloe vera, lactoferrin, cellulose, and enzymes. Note that these are intended to be spit out after use, not swallowed, and so can be safe for individuals with swallowing problems.
Delayed swallowing
Disrupted signals from the brain to the muscles involved in swallowing can mean diminished function. This can cause liquids and food to leak out of the mouth, get stuck in the throat, and/or flow uncontrolled into the windpipe (“trachea”) and thus the lungs. Delayed swallowing responses can lead to choking, coughing, and inhaling food or liquid (“aspiration”) – and ultimately pneumonia – as well as malnutrition.
An SLP can help both determine and treat delayed swallowing, including recommending exercises to improve function. These may include the following or similar:
“Super-supraglottic” swallowing – inhaling deeply and holding one’s breath, while simultaneously swallowing and tightening the abdominal muscles
Dry gargling (without fluid) while holding the tongue back as far as possible near the throat
Yawning while holding the tongue back as far as possible
Dry swallowing while squeezing all of the swallowing muscles as tightly as possible
When delayed swallowing interferes with safe eating and drinking, an SLP may recommend modified food textures and fluid consistencies to prevent aspiration and malnutrition. These include the following levels:
Full descriptions of the levels can be found here, and how to test them to be safe here. To thicken clear liquids in which adding thickening foods would not be appropriate, special products are available. These include Thicken Up Clear® and Clear DysphagiAide®, which enable the body to obtain maximum fluid value from the beverage or broth, with optimal mouthfeel.
Reduced local propulsion of food (poor “pharyngeal peristalsis”)
This disorder happens when the muscles in the “pharynx” part of the throat do not function adequately during swallowing. As a result, food and fluids do not move from the throat to the stomach, risking choking, aspiration pneumonia, and malnutrition.
Swallowing exercises and flood/fluid modifications as covered above may be helpful here as well.
Reduced functioning of the tongue
When tongue muscles are weakened by neurological dysfunction, they don’t push food and fluids properly into the throat for further processing. This can lead to drooling, speech problems, pocketing of food between the inner cheek and gums – risking infection and malnutrition – and no less unpleasant, aspiration and related pneumonia.
Fortunately, there are tongue-strengthening exercises that can be performed. An SLP can demonstrate specific moves and explain how often to do them, depending on the situation. The following are examples:
Stick out the tongue as far as possible. Press something flat like a spoon or tongue depressor into the top surface of the tongue and push the tongue against it. Hold for a couple of seconds, then relax for a couple of seconds. Repeat five times.
Repeat the above exercise but with the object pressed against the underside of the tongue.
Extend the tongue as far as possible to one corner of the mouth while pushing against a depressor. Hold for a couple of seconds, then relax for a few seconds. Repeat on the other side of the mouth. Repeat both processes five times each.
Extend the tongue as far as possible to various areas of the inner cheek (e.g., upper and lower forward, upper and lower middle, upper and lower back). Be sure to practice these extensions on both sides of the mouth.
Extend the tongue to the area just behind the upper teeth. Then curl the tongue toward the back of the mouth as far as possible. Hold for a few seconds. Repeat five times.
Repeat the above exercise but with the tongue just behind the lower teeth.
What are the signs of a swallowing problem?
Choking or coughing while eating or drinking, especially repeatedly.
“Pocketing” of food in the mouth (keeping food in the mouth for a long time before swallowing)
Trouble keeping food or liquid in the mouth while eating or drinking
Drooling
Frequent heartburn or sore throat
Unexplained weight loss
Unexplained pneumonia
Signs of a swallowing problem should be reported to a physician for in-depth examination and referral to an SLP if appropriate.
Diagnosis of swallowing problems
Following a physician’s examination is an evaluation by an SLP. Such an evaluation includes the following steps:
Guided description by the patient and even demonstration of the swallowing problems
Inspection of the mouth and throat, which may include a basic swallow check.
X-ray (“videofluoroscopy”) guided chewing and swallowing examination: this involves ingesting small amounts of food and fluids that contain a dye – the video portion enables the SLP to view movement of the food and fluids through the mouth and various parts of the throat, and the dye makes it easy to distinguish if anything coughed up is what was consumed (versus an unrelated chest infection)2
Treatment of swallowing problems
An SLP providing “speech therapy” can help people with MS who have eating and/or drinking difficulties (despite the name, it does cover those areas). The goal of treatment is to increase the ability to swallow food and fluids safely and in adequate amounts to ensure good nutrition 2. A referral to an SLP is usually made through the treating physician or nurse practitioner.
To treat swallowing problems, SLP use a wide range of methods, including the following:
Exercises to increase the strength and range of motion of the tongue (see above)
Ways to position the head and neck while eating or drinking to prevent problems
Ways to modify food and liquids to make them easier and safer to swallow (see above)
Exercises to clear food and fluids from the throat after swallowing
In some cases, an SLP may determine that safe, adequate swallowing is not possible for the time being. To ensure adequate hydration and nutrition while undergoing swallowing therapy and/or riding out an MS flare, tube-feeding (otherwise known as “enteral nutrition support”) may be recommended. This involves the placement of a thin tube into the stomach or intestines, either through the nose (usually short-term) or through the abdominal wall (longer term or frequent use). Though as with any medical procedure enteral nutrition support comes with some risks, when done well it can provide peace of mind during an otherwise tense period.
Tubefeeding
There are two primary options for tubefeeding – a readymade formula or homemade recipe.
Readymade
There are a variety of readymade formulae on the market, ranging from the sweet and simple for individuals focused on basic needs to the ultra-expensive “designer” type for individuals with extreme needs (e.g., burn victims with poor absorption after a crushing car accident). A health-conscious MS patient generally falls somewhere in the middle, depending on additional medical challenges.
Given that much of the MS science points to the need for as natural and hypoallergenic a diet as possible, readymade formulae with their often synthetic compositions incorporating allergens can be off-putting, as can their prices. However, they are very convenient, have high safety profiles (i.e., less likely to cause food poisoning, rarely contain gluten), and much less likely to result in tube blockages than homemade formulae. A couple of products stand out as meeting much of the criteria relevant to MS.
Complete® Standard 1.4 Calorie by Nestlé Health Science
Pros: Is a complete, high-fiber, low-sugar, low-saturated-fat, vegan, non-GMO, gluten-free, lactose-free kosher nutrition blend based on pea protein; provides oleic acid, the primary monounsaturated fat found in olive oil, and alpha-linolenic acid, an omega-3; no artificial flavors, colors, or sweeteners; calorically-dense for increased energy needs and/or fluid restriction; may qualify for insurance coverage
Cons: Not organic. Pea-based ingredients may contain trace amounts of lectins. For use in adults only.
Liquid Hope by Functional Formularies®
Pros: Is a complete, high-fiber, no-added-sugar, organic, non-GMO, vegan, gluten-free, corn-free, lactose-free nutrition blend based on whole foods, including a source of omega-3; is calorically dense for increased energy needs and/or fluid restriction; no artificial flavors, colors, or sweeteners; Functional Formularies offers organic, vegan products available in pre-digested, keto, and pediatric (child) versions; comes in a pouch free of bisphenol A (BPA), a chemical believed to exert adverse effects on the brain; eligible for insurance coverage
Cons: Contains legumes and pseudo-grains, to which some people may be sensitive.
Pivot® 1.5 Cal by Abbott Nutrition
Pros: Is a complete, high-protein, high-omega-3 nutrition blend; the milk-based proteins are pre-digested and so much less likely to cause an allergic or other intolerance reaction
Cons: Not organic or vegan-friendly. Low in fiber. Intended for intensive care patients and so people with MS may not qualify for insurance coverage. For use in adults only.
Standard Sole Source Nutrition Formulae by Kate Farms Medical
Pros: Is a complete, organic, high-fiber, low-sugar, low-glycemic-index, low-saturated-fat, vegan, non-GMO, gluten-free, lactose-free nutrition blend based on pea protein with easy-to-digest medium-chain triglycerides from coconut, essential omega-3 from flaxseed oil, and antioxidants from whole plant foods; no artificial flavors, colors, or sweeteners; available in a calorically-dense version for increased energy needs and/or fluid restriction; available in pediatric versions for children; may qualify for insurance coverage
Cons: Contains agave nectar, which is considered to be disadvantageous to liver health due to its high proportion of fructose 4,5.
Note: Tube feeding with any readymade formula requires the addition of water between “meals” to ensure adequate fluid intake.
While somewhat less convenient than readymade products, there is nothing quite like the normality inherent in real foods that are adjusted simply for consistency – and of course, the ability to have the desired composition. For the latter, it is often helpful to consult a dietitian to compose a formula that meets nutritional needs according to specific criteria that may be chosen for management of MS (and additional conditions, as relevant).
Note that because a regular kitchen is generally less sterile than the factories that manufacture readymade products, and because foods should be near room temperature when entering the tube, there is a concern for food safety. Remember to use only very clean hands and tools and very fresh/well-cooked foods during preparation, discard the formula after two hours maximum if kept at room temperature for that long, and always refrigerate or freeze “left-overs” immediately (if refrigerated, storage should not be for more than 24 hours). Guidelines for food safety: www.fsis.usda.gov, www.foodsafety.gov, www.homefoodsafety.org.
To prevent and manage feeding tube blockages, have the physician or nurse practitioner place a 14 French size or larger feeding tube, and be sure use warm water and a syringe to clear any build-up (this mixture can also be used to clear blockages). The formula must be thin enough to flow easily.
Helpful equipment
Heavy-duty blender, e.g.:
Strainer or fine sieve if using a regular kitchen blender or stick blender
Airtight storage containers for refrigeration
Ice cube trays or popsicle molds for freezing individual portions
Adequate refrigerator/freezer space
60 ml syringe with plunger
Bolus extension set for low-profile feeding tube (if using)
Feeding pump (if using)
Insulated bag or ice chest with ice packs for traveling
Pill crusher if adding supplements
The following are some basic guidelines for composing a feeding formula:
The USDA Choose My Plate plan tool provides individualized worksheets where individual caloric needs can be calculated to create a menu plan. A typical 1500 calorie, low-carbohydrate, high-protein, moderate-fat meal plan may include:
Grains and/or starchy vegetables: 1-4 servings
One serving is approximately 1 slice of bread (¼ inch thick), ½ English muffin or crumpet, ½ 6-inch pitabread, ½ 8-inch tortilla, ½ medium regular or sweet potato (2¼-3¼-inch diameter), ½ cup cooked pasta, ⅓ cup cooked rice or other grain/pseudograin, ¾ cup cooked corn kernels.
May not be necessary if using starchy protein foods, such as legumes
Fruits: 2-3 servings
One serving is approximately 1 cup or a piece the size of an adult woman’s fist, with the following exceptions: ½ banana, ⅓ pomegranate, 2 Tbsp (30 ml) dried; ½ cup pureed fruit, such as applesauce
Vegetables (including mushrooms and seaweed): 3-4 servings
One serving is approximately 1 cup raw or ½ cup cooked or reconstituted
Protein (meat or legumes and their products): 2 servings
One serving is approximately 3 oz (85 g) meat/poultry/fish/tofu/tempeh, 1 cup beans or lentils
Dairy or plant-based high-calcium alternative: 2 servings
One serving is approximately 1 cup dairy milk or yogurt, or fortified plant-based products
Fat (oils, seed butters, nut butters, and fatty fruits such as coconut and avocado): 1-5 servings
One serving is approximately 1 teaspoon oil, 2 tablespoons avocado, 9 medium olives, 1 tablespoon whole undiluted tahini (equivalent to 2 tablespoons diluted), ½ Tbsp peanut butter, 1 tablespoon nuts or seeds
May not be necessary if using naturally fatty combination foods, such as salmon
The following provides an idea of how a typical daily homemade tube feeding regimen may look:
Breakfast:
1 cup (240 ml) dairy milk or a plant-based milky beverage (note that the latter can have widely varying protein content)
1 cup (240 ml) fruit – fresh, frozen, or canned in natural juices
½ cup (120 ml) lightly packed fresh leafy greens
½ cup (120 ml) plain yogurt (dairy or plant-based) or raw firm tofu
1 Tbsp (150 ml) almond or peanut butter
Spices (e.g., cinnamon and/or nutmeg) to taste
Room-temperature water to thin out as necessary
¼ cup (60 ml) room-temperature water to flush tube clean after meal
Lunch:
1 cup (240 ml) vegetable soup
4 oz (120 g) cooked meat/chicken/fish, raw firm tofu, or steamed tempeh, or ½ cup cooked legumes (beans or lentils)
½ cup (120 ml) mashed regular or sweet potatoes
½ cup (120 ml) cooked non-starchy vegetable
½ tsp (2.5 ml) flax seed oil (not heated)
Herbs and spices to taste
Room-temperature water to thin out as necessary
¼ cup (60 ml) room-temperature water to flush tube clean after meal
Dinner:
2 cups (480 ml) bean soup or seafood chowder
½ cup (240 ml) cooked mixed vegetables
Herbs and spices to taste
Room-temperature water to thin out as necessary
¼ cup (60 ml) room-temperature water to flush tube clean after meal
Snack:
1 cup (120 ml) plain yogurt (dairy or plant-based)
1 cup (120 ml) fruit – fresh, frozen, or canned in natural juices
Room-temperature water to thin out as necessary
¼ cup (60 ml) room-temperature water to flush tube clean after meal
Nutrition Facts (approximate): 1500 calories, 78 g protein, 168 g available carbohydrate (with 49 g fiber), 44 g fat (3:1 omega-6:omega:3 ratio), 2+ L water
Recipe resources are available through sites such as Natural Tubefeeding.
If taking nutritional and herbal supplements, the powder from well-crushed tablets and content of emptied capsules can generally be mixed in with the meal before administering through a tube – just be sure that there isn’t sediment that gets left behind and thus not ingested. Note that any timed-release products will likely lose that feature, and that the tiny dense pills generally provided by Oriental practitioners tend to not crush well, and so it may be preferable to request an alternative form (e.g., powder or liquid).
Remember: It is important to keep the mouth clean even if not eating. Continuing oral hygiene practices such as brushing the teeth and tongue is essential.
References
1. Logemann JA BA. Swallowing Disorders and Their Management in Patients with MS. National Multiple Sclerosis Society. Accessed 10 October 2022, https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Clinical-Bulletin-Swallowing-Disorders-and-Their-Management.pdf
2. Panara K RAE, Padalia D. Physiology, Swallowing. StatPearls. 2022;
3. Shinde MR, Winnier J. Comparative evaluation of Stevia and Xylitol chewing gum on salivary Streptococcus mutans count – A pilot study. J Clin Exp Dent. Jun 2020;12(6):e568-e573. doi:10.4317/jced.55720
4. Saraiva A, Carrascosa C, Ramos F, Raheem D, Raposo A. Agave Syrup: Chemical Analysis and Nutritional Profile, Applications in the Food Industry and Health Impacts. Int J Environ Res Public Health. Jun 8 2022;19(12)doi:10.3390/ijerph19127022
5. Figlewicz DP, Ioannou G, Bennett Jay J, Kittleson S, Savard C, Roth CL. Effect of moderate intake of sweeteners on metabolic health in the rat. Physiol Behav. Dec 7 2009;98(5):618-24. doi:10.1016/j.physbeh.2009.09.016
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