Bite, Chew, Swallow: How to Deal With Dysphagia When You Have MS

Suddenly being unable to swallow is scary, to say the least.

“When dysphagia — trouble swallowing — strikes, I can feel my adrenal glands kick in, my eyes widen, and a feeling of genuine panic for my life arise,” says Trevis Gleason, 55, a former chef who blogs for Everyday Health about life with multiple sclerosis (MS).

“I've even had to have someone perform the abdominal thrust maneuver when I went into a full choke,” he says.

While Gleason experiences swallowing issues only occasionally, dysphagia is a persistent and common problem — it’s estimated that more than one in three people with MS have trouble swallowing, according to a meta-analysis published in Neurological Sciences.

What Goes Wrong With Swallowing

Swallowing is a rapid coordinated multistep process involving the tongue, larynx, esophagus, and brain; considering this, it's amazing that we don't normally have to think about it.

“There are 17 components that work together during the two-second period in which swallowing occurs,” says Martin B. Brodsky, PhD, an associate professor and speech-language pathologist in the department of physical medicine and rehabilitation at Johns Hopkins University School of Medicine in Baltimore.

Of the 12 cranial nerves in the brain, Dr. Brodsky says, half are devoted to swallowing, and these 6 cranial nerves control upward of 30 pairs of muscles.

In a properly executed swallow, the airway is closed tightly before the swallow is initiated and food or liquid enters the throat. Once the swallow is complete, and the food or beverage is gone, the airway opens back up.

Swallowing issues related to multiple sclerosis are usually due to problems in the timing, or coordination, of a swallow or to weakness in the muscles used to swallow.

Faulty timing When the timing of a swallow is off, food or liquid in the mouth drips down into the throat before the swallow is initiated and the airway is closed off.

“Because you haven’t initiated the swallow in a timely manner,” Brodsky says, “you now have the opportunity for the food to drop into the airway, and you can have coughing or choking before the swallow begins.”

Weak swallowing muscles When the muscles involved in swallowing are weak, the swallow may be initiated properly and the airway may close, so it’s protected, but not all the food or liquid goes down. That means that when the swallow is complete and the airway opens back up, a residue of leftover food and drink is left in the throat.

“This is the reason most patients with MS have problems,” says Brodsky. “Over time, that residue builds up, and eventually there may be a tipping point. The areas within the throat that are capable of keeping the person safe under most circumstances are filled.”

When food or liquid enters the airway, it’s called aspiration. If the person cannot cough out the material that was breathed in, it can lead to a potentially life-threatening lung infection known as aspiration pneumonia. In fact, aspiration pneumonia is one of the leading causes of death in MS (although swallowing problems are just one of many risk factors for developing it).

Risk Factors for Dysphagia

Trouble swallowing can happen in anyone with MS, but it’s more common in people with advanced disease, according to the National Multiple Sclerosis Society (NMMS).

Research published in February 2021 in Dysphagia looked at 865 people with MS to study prevalence and risk factors. The average age of the participants was 38 years old, 83 percent female, and 85.3 percent had relapsing-remitting MS (RRMS), 12.3 percent had secondary progressive MS (SPMS), and 2.4 percent had primary progressive MS (PPMS).

Investigators found that one in four participants had dysphagia — 22.2 percent of people with RRMS, 44.3 percent of people with SPMS, and 42.9 percent of people with PPMS. The identified risk factors for dysphagia included the following.

Higher disability score The Expanded Disability Status Scale (EDSS) is a tool used to measure disability in people with MS; it evaluates disease progression and changes in specific MS symptoms. The scale includes neurological symptoms, but the main focus is on measuring mobility. The scores range from 0 to 10, with a higher score (5.0 to 9.5) indicating a higher degree of loss of ambulatory ability (being able to walk around). The study found that people with a higher EDSS score had a greater risk for dysphagia.

Symptoms indicating cerebellar impairment MS can affect the cerebellum, a part of the brain that coordinates voluntary movement, gait, posture, and speech. When it does, it can cause such symptoms as tremor, ataxia (lack of muscle control), and dysarthria (a speech disorder caused by muscle weakness).

Motor dysfunction This can include symptoms such as problems with walking and balance.

How Dysphagia Is Diagnosed

Typically, one or a combination of the following exams will be performed to evaluate dysphagia.

Oral motor exam In this exam, the speech-language pathologist takes a look at the person’s mouth, how he is swallowing and the way his tongue moves, and listens to how his voice sounds.

“We may say, ‘Stick out your tongue, lift it up, push it down, move it left to right, put your tongue against your cheek,’ etc. We also test strength and sensation,” says Brodsky.

Instrumental evaluation Two tests using instruments are performed to look at the physiology of swallowing.

• Videofluoroscopy (also known as a modified barium swallowing study) is a moving X-ray that looks at the digestive tract from the lips down to the stomach. The patient is first given a small amount of barium to make the mouth, throat, and esophagus visible on X-ray, according to the National MS Society. The movement of these working parts of the body is recorded by a videofluoroscope as the person samples foods and liquids of different consistencies. “We care more about how thick food is, such as water versus pudding, more so than how smooth or rough it is,” says Brodsky. The best treatment strategy will be determined by the location and the kind of swallowing issue that is identified.
• Fiberoptic endoscopic evaluation of swallowing involves inserting a tiny camera through the nose to the back of throat so the speech-language pathologist can see the throat during swallowing. “We can’t see the oral cavity using the camera, so anything that’s going on with chewing or the tongue or where the food is in the mouth we won’t see. But I can see if the food or liquid has dropped past the tongue in the mouth before the person swallows, and see why they are aspirating,” says Brodsky.

A Combination of Approaches Can Help Improve Swallowing in People With MS

Once a cause is determined, a speech-language pathologist considers what approach might help to improve swallowing. But Brodsky says there is no such thing as a one-size-fits-all solution, and a combination of approaches is often used.

“For some patients, a head turn works. For others, it may be a maneuver and a posture change. And sometimes when you think you’ve fixed one problem, you may have inadvertently created another,” he says.

Adjusting one’s thinking can also be a challenge, adds Gleason.

“There is an apparent dichotomy between what we think we should do, and what we must do to minimize choking risks — for instance, tilting the head down rather than back to open the esophagus feels unnatural, or thickening very thin foods so that they are recognizable to the senses when we think we should thin things to make them go down easier,” he says. “It's not hard to learn. What's difficult is to replace the innate reactions with learned behaviors that I know could save my life.”

Posture Changes May Help Control the Flow of Liquids and Foods

Changes in posture while swallowing can change the direction of or control the flow of liquids and foods.

“This is something patients can do with their body, typically their head, such as turn their head or tuck their chin,” says Brodsky. “But it’s different for everyone and takes trial and error during an instrumental evaluation to see what helps.”

Posture changes have helped Gleason somewhat. “Putting my chin to my chest can help to open the esophagus while closing off the airway a bit. This can help me sometimes,” he says, adding “though I must say that being that conscious of the right action in the moment can be tough.”

Techniques Designed to Keep Airway Closed May Improve Swallowing

Maneuvers are specific techniques to change the timing of swallowing, keep the airway closed, or help move food and liquids out of the mouth and into the throat. Which maneuvers are recommended depend on what’s going wrong in a particular person’s swallow.

An example of a maneuver is to hold one’s breath before and during a swallow.

“When everything’s functioning properly, as we swallow, we are forced to hold our breath, because the airway closes when we swallow,” Brodsky explains. “So before a patient swallows, I can ask him to take in some air, hold it, then swallow. When you voluntarily hold your breath, your vocal cords close, and therefore your lower airway is protected, and food or drink won’t drip into it.”

Changing the Consistency of Food and Liquid Can Reduce the Risk of Choking

Changing the volume or consistency of foods and liquids can sometimes make them safer to consume.

“For example, I can give you a teaspoon of water, a tablespoon of cream soup, or a bite of a graham cracker,” says Brodsky. “Not only are these all different consistencies, but they are different volumes. Smaller is often better, but not always, depending on the patient.”

While the speech-language pathologist helps patients determine which consistencies and volumes are safest for them, a dietitian can help ensure the food is providing proper amounts of carbohydrates, protein, fats, and other nutrients, as well as help improve the tolerability and likability of food.

“Most of the patients I see never see a dietitian,” says Brodsky. “The patients are manipulating the consistency of their own food, not its nutritional content. However, the dietitian can come into play where nutrition is a concern.”

Strengthening Exercises for Better Swallowing

A variety of exercises may also help to improve swallowing.

“Simply turning your head or doing a maneuver does not improve physiology,” says Brodsky. “We don’t want patients doing this the rest of their lives.”

The good news, he says, is since MS responds well to exercise — and swallowing is about muscle coordination — patients can push to fatigue, rest, and then continue with the exercises.

The specific exercises will vary from person to person, so ask your physician or speech-language pathologist to show you the ones that will help you.

In addition, if swallowing problems arise during an MS relapse, they may recede once the relapse is over.

“Chances are, the impairments we find during the exam will improve to the point where they may not have to do the head turn for a while until the next exacerbation of MS,” Brodsky says.

But “some MS patients may not get back to baseline” after a flare, “so what we are trying to do is maintain and keep swallowing issues from getting worse.”

Additional reporting by Cathy Cassata.