ALS Multidisciplinary Clinic

Learn about how to manage difficulties with communicating, eating, and drinking that are often frustrating symptoms for people with ALS.

Paige Nalipinski, Speech Therapist in the MGH ALS Clinic

Problems communicating with others and difficulties with eating and drinking are frustrating symptoms that people with ALS experience. As the disease progresses, it weakens the muscles of the mouth and throat by causing atrophy (a decrease in the size of the muscle) or spasticity (decrease in control caused by “tightening” of the muscles). These changes affect various aspects of the speech (dysarthria) (dĭs-är'thrē-ah) and swallowing (dysphagia) (dĭs-fā'jah).

What is Dysarthria? Dysarthria refers to changes in speech that result from the muscle weakening. Dysarthria can interfere with your ability to:

  • Produce clear sounds (articulate)
  • Draw an adequate breath to speak which results in decreased volume of speech
  • Control the quality of the sound (timber) or what your voice sounds like
  • Maintain the natural rhythm of speech (prosody), which helps others understand the person’s intended message
  • Control the escape of air from the nose, which affects how nasal the person sounds (resonance) making it difficult to produce certain sounds such as m, n, and ng

The rate of progression of dysarthria in ALS can vary greatly from person to person. Eventually, however, everyone with ALS experiences some degree of dysarthria.

tuesdays with an slp

Nalipinski on ALS care guidelines and her experience working with patients at the MGH ALS Multidisciplinary Clinic. Read more.

Speech-Language Pathologists

A speech-language pathologist (SLP) is someone who is specifically trained to assess, treat, and manage the speech and swallowing difficulties that people with ALS experience. SLPs are an integral part of the ALS Multidisciplinary clinic at MGH and are available to answer your questions. As part of the clinic team, the SLP develops approaches to deal with problems in speech and swallowing that are related to ALS or cognitive changes (reasoning and processing information) that can result from ALS. The SLP can also recommend devices to assist with communication and maintenance of proper nutrition and provide ongoing education to you and your family about current and anticipated needs. A primary goal of the SLP in ALS care is to help you maintain your ability to communicate successfully, thereby improving or maintaining your quality of life.

When should I see a Speech-Language Pathologist? If you begin to have problems with speaking or swallowing, an early meeting with an SLP may help. For your benefit, schedule an SLP consultation when you first begin to notice symptoms or changes or ask to meet with our SLP at your next clinic visit.

How Does an SLP Make a Speech Assessment?The SLP will ask you to perform some simple, non-invasive tests that enable them to evaluate your speech including vocal quality, overall intelligibility, breathing, and coordination of muscle movement. These tests may include tasks such as reading aloud, speaking naturally, producing certain sounds in isolation (such as “papapa”), and holding the sound “ah” as long as possible. The SLP will also assess the strength of your lips, tongue, and soft palate (the back part of the roof of the mouth) by having you perform simple oral movements, like pushing your lips against a tongue depressor. The SLP will repeat some or all of these tests at each visit to track changes.

How Do I Manage Changes in Speech? The first step in managing changes in your speech is to have an assessment by an SLP. One of the SLP’s primary roles is to help people with ALS maintain the ability to communicate successfully. This may include teaching ways to compensate for difficulties with speaking, helping with the decision to use an augmentative communication device and providing training for augmentative communication devices.

Techniques to Improve SpeechPeople with ALS who only have minor problems with speaking can learn techniques that will make his or her speech easier to understand. For example, there are techniques for speaking in a group setting.  Over-articulation or exaggerated pronunciation can help speech be better understood. As dysarthria progresses, people with ALS need to learn new techniques to compensate for further changes in speech.

Communication DevicesAn augmentative communication device is a means of supplementing or replacing speech. These devices enable people who are either unable to speak or unable to be easily understood, to communicate effectively. An augmentative communication device can be something as simple as an alphabet board or as complex as a computer system driven by a laser-guided mouse that produces the sound of a person’s own voice.

It is recommended that people with ALS undergo an assessment for augmentative communication devices when their speech is just beginning to change as it takes time and energy to transition into using an augmentative device. Working with insurance providers, securing funding, obtaining the device, learning how to use it, and making the emotional adjustment to this new means of communication are all best accomplished when you are still able to communicative effectively and do not feel like you are pressed for time.

Usually the evaluation for augmentative communication devices is conducted at a facility or clinic other than the ALS Multidisciplinary Clinic at MGH. The full evaluation takes two to three hours and must be conducted by a speech pathologist and/or occupational therapist with expertise in high-tech augmentative devices. These clinicians usually know whether insurance will cover the cost of the devices and they can help advocate or appeal for devices through insurance or other funding sources.

Voice Banking

If your speech is normal, or only slightly impaired, you may choose to “bank” your voice so that it can be used by an electronic augmentative device in the future. Voice banking involves reading words and phrases into a computer recording system. Later, these words and phrases can be used as the voice output of a computerized augmentative communication system. This type of augmentative communication system involves the typing of letters, words, or phrases into a computer which then uses your own voice (as opposed to a computer-generated voice) to speak the words and phrases out loud.

Problems with Swallowing

Since the same muscles used for speaking are used for eating and drinking, almost everyone with ALS will eventually also experience some problems with swallowing. Swallowing involves a complex network of muscles and nerves in the mouth and throat that work together to move food from the mouth down into the stomach while also preventing us from inhaling our food and choking.

People with ALS experience changes in swallowing as a result of weakness in the lips, tongue, soft palate, pharynx (the muscles in the throat that squeeze foods through to the esophagus or food pipe), and the larynx (the upper part of the airway that needs to close quickly to prevent choking). Even when all of these muscles are working well, a person with ALS can still have trouble swallowing if their respiratory muscles are affected and they have trouble coordinating breathing and swallowing.

The types of changes in swallowing that occur are fairly predictable, however, the rate at which they occur is not. For example, an individual with ALS may experience an initial decline in his or her ability to swallow effectively and then may experience a period where the symptoms remain stable.

Managing Problems with Swallowing

The first step in managing changes in swallowing is to have an SLP perform an assessment. Together with other members of the ALS multidisciplinary team, the SLP can help you manage your overall nutrition and swallowing.  Even if there are no significant changes in swallowing, it is important to be aware of, and maintain, proper nutrition early in the disease.

An SLP can help you maintain your nutrition by teaching you techniques which will improve your ability to swallow. An SLP can also advise your family members and other caregivers on ways to help you eat and drink.

How is Swallowing Evaluated?The SLP will observe and evaluate your ability to eat and drink. By watching you drink a glass of water and eat either a cookie or dish of pudding your ability to hold food and liquid in your mouth, to chew, and to swallow can be evaluated. The SLP will watch for obvious difficulties, such as coughing and choking, but also less obvious indications of difficulty.  These may include the inability to efficiently manage the food in your mouth, leakage from your mouth, and other muscle weakness. Based on what is observed, they may recommend a change in food or beverage consistency as well as other recommendations such as changing head position during swallowing or changing liquids and solids. This type of screening is usually done in the clinic.

If your health team is concerned about weight loss or breathing problems, or if there are changes in speech that are indicative of early swallowing problems, a full swallowing assessment may be performed. This assessment is called a modified barium swallow (MBS). The MBS can offer a more detailed understanding of the problem than the SLP can provide through simple observation. The MBS test also helps the person with ALS to better understand and visualize the extent of the swallowing problem.

The MBS test is performed by an SLP and a radiologist. This test is painless and requires no advance preparation (i.e. you can eat and drink before the test.) You will be asked to swallow small sips of liquid and have small bites of solid food of different consistencies. Each of these liquids and solids contains a small quantity of barium to make it visible on the x-ray screen. A video is made up of all the x-rays from the MBS so the SLP and radiologist can observe what happens. Immediately after the test, the SLP will review the test with you and provide recommendations to help with your swallowing.

Techniques to Help with SwallowingThe SLP will make recommendations that will help you eat and drink safely. These may include preferable food consistencies, changes in the position of your head while eating and drinking, and maneuvers that may help keep your airway closed during swallowing.