Empowering Patients with ALS with voice therapy

By Shannon Stocks, MS, CCC-SLP

Speech-Language Pathologist

The Ice Bucket Challenge swept the United States beginning in the summer of 2014, spreading awareness and raising funds for research addressing Amyotrophic Lateral Sclerosis (ALS). While videos of dripping celebrities and soaked politicians make for lighthearted entertainment, the facts surrounding ALS carry much more weight.

What is ALS?

Every day, an average of fifteen people in the United States are diagnosed with ALS. And every year more Americans pass away from ALS than more commonly discussed diseases such as Huntington’s or Multiple Sclerosis (Learn About ALS, 2020). ALS, also known as Lou Gehrig’s disease, is a progressive motor neuron disease, with two distinct types of onset.

Bulbar onset is apparent when the individual’s speech and swallowing are impacted first. This means that an individual may retain fine motor control, such as buttoning a shirt, holding a water glass, or turning pages of a newspaper, for a longer period of time while their speech becomes more difficult for others to understand.

In contrast, a spinal onset is apparent when the individual’s extremity movement is affected first. While an individual experiencing this might have difficulty opening mail or using a computer keyboard due to the deterioration of gross and fine motor skills, speech intelligibility is preserved for a longer period of time.

Regardless of onset, the likeliness of a person with ALS developing a motor speech disorder is high. Due to the rapid progression of the disease, it is imperative that management strategies be introduced as soon as possible.

When Should Voice Therapy Be Introduced in ALS?

The deterioration of communication skills in ALS patients can be challenging and isolating for the individual. An individual with ALS may first notice that they are unable to be understood by a park-goer over the sound of street traffic. Then by a familiar server above the chatter of a restaurant. And, eventually by a close family member in a quiet living room.

Due to the inevitable progression of ALS, it is imperative to introduce voice therapy as soon as possible. In some cases, by the time therapy is introduced, one’s life may already be severely impacted. In fact, a systematic review of over forty studies from the years 1988 to 2011 concluded that the majority of individuals with ALS who had participated in the use of an Augmentative and Alternative Communication (AAC) device retrospectively wished the device had been introduced earlier. Introducing the device earlier would allow for a longer period of speech and language support.

How Does ALS Impact Voice?

Upper Motor Neurons (UMNs) comprise the connections between the control center, our brain, and our spinal cord. They are the messengers of those signals to our arms, legs, and muscles of speech. Lower Motor Neurons (LMNs) connect this spinal cord, our messenger, to those extremities to generate movement. When ALS affects the LMNs, they are unable to coordinate movement, causing weakness and fasciculations. This malfunction in LMNs is called flaccid dysarthria. On the other hand, when ALS affects the UMNs the short-circuiting from the brain to the spinal cord causes the increased tone of articulators. This malfunction of UMNs is called spastic dysarthria, resulting in a progressive motor neuron disease. The effect is on both the upper and lower motor neurons, manifesting in mixed flaccid-spastic dysarthria. This means that an individual’s speech may present as both breathy and strained, with slow speech movements due to the tightness of the muscles used for speech. The utility of voice therapy to help delay these complications is apparent. However, before any intervention is planned or introduced to a patient with ALS, the type and severity of the voice impairment should be assessed thoroughly.

What is Involved in a Voice Assessment?

A thorough speech examination using both standardized and non-standardized measures will determine the level of involvement of several subsystems. These subsystems include respiration, phonation, articulation, and resonation. This allows for a more nuanced approach in tailoring voice therapy for a specific patient.

There are multiple ways to progress through an assessment for a particular patient with ALS. For example:

• Encourage the patient to fill out a self-report to ascertain any impacts of their impairment on daily activities.
• Conduct an oral-motor examination (OME) to assess strength, range of motion, and coordination of the muscles used for speech.
• Test diadochokinetic syllable rate, or the rapid successive production of speech sounds using different parts of the mouth, tongue, and soft palate.
• Record a maximum phonation time to assess pitch, volume, and endurance.
• Record and assess the reading of short and long passage samples, such as the rainbow passage.
• Record and assess spontaneous speech using conversation starters.

There are many evidence-based techniques that can be introduced once the initial evaluation is conducted. These techniques include stretches and massage to maintain the range of motion of the muscles used for speech. This reduces tightness, while vocal function exercises increase speech intelligibility.

How Can Individuals with ALS Preserve Their Voices?

For optimal training time, speech and language pathologists can offer an AAC in early-stages and catalog the patient’s voice for future use. There are two distinct ways to preserve the voice of someone with ALS: message banking and voice banking.

Message banking is the process of digitally recording and storing the inflections and pauses that help make an individual’s voice unique. These may include unique routine conversational quips including names of loved ones (e.g. “Have a good day at work, Beth”) and frequently used phrases (e.g. “I’ll take a black coffee to go, please”). This computerized system catalogs the captured phrases and preserves the inflections and pauses. Message banking may assist with preserving a fulfilling sense of self, including individual humor and personality. The earlier message banking can begin, the more phrases can be stored.

On the other hand, message banking, unfortunately, does not allow for the creation of novel messages. And, as the disease progresses, the individual’s speech may only be recognizable to familiar listeners. While some opt for message banking by proxy (aka asking a family member with a similar pitch range to assist with the message banking), others try voice banking.

Voice banking is a powerful way to increase the individual’s ability to communicate with friends and family members through a synthetic voice based on the patient’s speech samples. Because the speech samples have to be clear, this alternative form of voice preservation is typically pursued only if the individual is displaying a mild impairment and has energy for this task. With the speech samples collected, the program is capable of creating novel messages using synthesized approximations of one’s natural speech.

How Will Voice Therapy Benefit Patients with ALS?

No matter which voice therapy techniques are pursued, one fact is indisputable: communication is the key to self-advocacy and self-expression. Voice therapy is a chance to empower the individual. Through using the techniques described in this article, patients with ALS can derive continued independence amidst a debilitating disease. Whether it’s ordering their preferred dessert at a restaurant, sharing an old joke with a new friend, or telling those around them they love them when they need it most. Whichever approach is used (therapeutic voice exercises, message banking, voice banking, or any combination of the three), these skills can make tremendous differences in allowing patients to expand their means of communication.