Collaboration and Innovation in SLP: Preserving an ALS patient’s voice

From left: Madeleine (Maddie) Leger, a speech-language pathologist (SLP) at Horizon’s The Moncton Hospital (TMH); Susan Howey, an SLP at Horizon’s Stan Cassidy Centre for Rehabilitation; and Monica Poirier, occupational therapist on Rehabilitation meet via Zoom for Health Care, showing how health care providers from different disciplines and facilities in Horizon can collaborate to provide safe and quality care for patients.

May 27, 2021

A complex case has proved how disciplines and colleagues across Horizon can come together to create the best treatment and quality of life for a patient.

May is Speech and Hearing Month, and a two Horizon speech language pathologists (SLP) and an occupational therapist (OT) dedicated time and energy over the past several months to help a patient preserve her natural voice in case her diagnoses takes it away from her.

Madeleine (Maddie) Leger is a speech-language pathologist at Horizon’s The Moncton Hospital (TMH). She recently began working with a person who was recently diagnosed Amyotrophic Lateral Sclerosis (ALS).

ALS is a progressive neurological condition that may eventually affect a person’s ability to speak.

Maddie and the patient are working to record “sound bytes” (utterances and full phrases) of the patient’s current speech so if her speech becomes affected, a computer will be able to speak for her.

The patient is a perfect candidate for recording and storing her voice: she has clear speech and is extremely eager to participate in voice and message banking.

“It was one of her goals from the get-go, even prior to talking about AAC – augmentative alternate communication,” said Maddie. “She said, ‘I want to be able to communicate my basic wishes, my wants and needs, until the very end’.”

To start the process, Maddie reached out to Susan Howey, a speech-language pathologist at Horizon’s Stan Cassidy Centre for Rehabilitation. Susan specializes in augmentative communication, and one of her roles is to connect with local SLPs to collaborate on cases where patients could use strategies and/or devices that either augment or replace speech if speech is challenging.

From left: Susan Howey, a speech-language pathologist at Horizon’s Stan Cassidy Centre for Rehabilitation, Monica Poirier, occupational therapist on Rehabilitation at Horizon’s The Moncton Hospital (TMH) and Madeleine (Maddie) Leger, a speech-language pathologist at TMH discuss how an augmentative communication device will support a patient with ALS.

AAC devices can be low-tech, such as non-electronic writing tools, or high-tech, such as a speech generating device or a communication app. These tools support someone who has difficulties communicating using speech.

For this patient, an app was a good fit, as she could use it to type a message or to do text-to-speech. High-tech devices come with costs, but the team was able to secure the patient an iPad donated through Easter Seals, and are working on getting an app.

“This process, for someone with ALS, can help give them a bit of a sense of control over a least a piece of all they are facing,” said Susan. “Even if at some point they’re not able to use their natural speech, they have a back-up system.”

Voice banking is a strategy to help people who are at-risk of losing their speech or losing their voice create a synthetic voice that sounds like them (especially compared to a typical computerized voice on any speech-generating device). The process involves reading out loud and recording many sentences — sometimes more than 2,000. This takes time, commitment, motivation and stamina.

If a patient‘s speech is significantly impacted, voice banking is a way to build a more personal-sounding synthetic voice to communicate their message.

Message banking, on the other hand, is the recording of specific statements, which are stored on a device and the patient only has to press play to play back the message — intonation, emotion, feeling and all.

Message banking has to include words or phrases they’d anticipate saying, and often includes catchphrases or something important they’d say to their loved ones or caregivers.

The patient has already started writing down messages to be banked: her loved ones’ names, “I Love You,” her laugh, and her signature saying, “You bet!”

These are statements, the care teams says, where a synthesized voice just wouldn’t cut it.

For this patient, the team is building a bank of both utterances and full phrases. So far, they’ve done 2,000 utterances; the maximum number for the app they’re working with is 3,500.

The process hasn’t been all smooth sailing; while the patient, who is in hospital, is eager, it’s still a tiring process and one that’s difficult to come to terms with.

Maddie relied on Monica Poirier, occupational therapist (OT) on the Rehabilitation floor at TMH, to ensure the patient could use the equipment provided at any stage in her diagnoses. The patient uses a power  wheelchair (one of the first patients that, on the first day, she was able to use an elevator, Monica said).

As an OT, Monica ensured the wheelchair could hold the iPad and the patient could easily access it at the right angle to use independently. 

This care plan can be used with patients with neurological diseases and injuries — anyone who has difficulty using their natural speech, including those who have a stroke or brain injury, are diagnosed with Multiple Sclerosis and even those with an upcoming surgery where they may temporarily lose their natural speech.

They all agree the patient’s willingness to go through this experience, as well as their time together collaborating on her care, will help other patients down the road.