Banking for the Future

A voice is an important part of a person’s identity. Personality and emotions echo with every inflection and pronounciation quirk, in every “hello” and “I love you.” A voice is an audible signature that loved ones know anywhere.

Not everyone with ALS loses their voice, but it’s a common symptom, especially in bulbar-onset ALS. While there’s no easy way to prepare for this prospect, “voice banking” is a viable option for preserving your unique sound and the identity it represents.

Voice banking doesn’t have to be complicated or fancy — but starting early is ideal. Banking can range from recording signature phrases and sayings on a tape recorder, to recording audio files on a computer, to recording your voice on a communication device. People record stories, songs, laughter, family jokes, greetings and words of affection.

Oftentimes, the toughest hurdle to cross is simply getting started.

A labor of love

From the moment Tammy Brown of Thida, Ark., stopped trying to convince herself that ALS wouldn’t take her voice, she worked tirelessly to record her voice in multiple ways.

“My children were the main reason I decided to use ModelTalker,” says Brown, 37, who received an ALS diagnosis in 2004. “I didn’t want this disease to totally take my voice away. It may take my ability to speak but not my voice, my spirit.”

Tammy Brown uses the ModelTalker voice software with her communication device. Brown selects a preprogrammed button to open the ModelTalker dialogue box, and types and speaks messages with her ‘signature’ synthetic voice.

In late 2006, Brown began using the free ModelTalker speech synthesis software program (see “Creating a Custom Voice”), which creates a custom computerized voice that includes characteristics of the speaker’s normal voice. By the time she started, Brown already was experiencing some voice weakness that affected her pronunciation.

To complete the ModelTalker’s full inventory of 1,650 words and phrases needed to produce a natural-sounding synthetic voice, Brown worked on her laptop for at least three hours each day for about two weeks. It was frustrating when ModelTalker wouldn’t accept some words, recalls Brown, who, in addition to voice weakness, had a Southern drawl that seemed to confound the program. But, she says, “it was worth it because I like to hear my voice the way it was before ALS.”

Brown’s husband, Scott, uploaded her voice inventory to the ModelTalker Web site, and about a week and a half later, she received a link to download her free synthetic voice.

Although it’s still a computerized voice, Brown is pleased with the final product and recommends it to “anyone who has the patience to record all of the phrases.” She says her daughter, Lauren, feels closer to her thanks to the ModelTalker voice, as if they’re having real heart-to-heart conversations.

When Brown received a communication device in February 2008 (an ECO-14 from the Prentke Romich Co.), her husband easily transferred her ModelTalker files from their PC to the device.

Currently, Brown uses both her custom ModelTalker voice and one of the built-in voices on her communication device. Although the built-in voice isn’t at all like her own, she prefers it in some situations because it has word prediction (a feature not offered by ModelTalker) which allows her to communicate faster because the device anticipates what she might want to say.

“When I start typing, I have to leave spaces between sentences because they run together and sound funny,” she says of the ModelTalker voice. “My kids laugh at me. It doesn’t pronounce words as correctly as the ECO, but I guess practice makes perfect.”

Tammy Brown (pictured with her son, Logan, age 10 at the time) recorded more than 100 personal messages directly onto her communication device. Now, she selects different buttons on the screen to activate the prerecorded messages, especially for her children and husband.

Brown also “banked” her natural voice directly onto the communication device. With help from family, Brown spent about a month recording more than 100 phrases onto her ECO so her children could hear her say “happy birthday,” “I love you,” “do your homework,” “clean your room” and other phrases in her natural (albeit weakened) voice.

“My children like some of the sayings I recorded, and they don’t like some, such as ‘you’re grounded,’” says Brown. “My son, Logan, and I laugh at some of the funny stuff like ‘I love you more, I love you to the highest number, and I am proud of you.’ We like watching the dogs jump around and look at me when I call their names.

“Voice banking was a long process, but it was worth every minute,”she says, noting that children will forget the sound of your voice very quickly.”

So much to say: Setting priorities

Speech-language pathologists (SLPs) suggest starting voice banking — in any form — before experiencing any detectable changes in speech. Check with the SLP at your local MDA clinic for assistance and helpful suggestions for getting started, such as lists of commonly used words and topics.

Kathy Thomas, an SLP at the University of North Texas, encourages her clients to work with family members to create a “communication inventory” of personalized messages they will use regularly. Of those messages, decide which ones should be in your own voice.

“Voice banking is a way to maintain personal connectedness,” says Thomas. “We want people to be able to communicate and interact, not just express basic needs.”

Some voice banking tips:

• Review your typical daily routine, including activities and people with whom you interact.
• Make a list of important categories (such as activities and health care needs), and then brainstorm different messages for each category.
• Make a list of specific phrases for certain family members, friends and helpers.
• Include signature phrases and sayings that loved ones identify with you, like greetings, sayings, pet names, jokes, etc.
• When you’re ready to start recording:
• Use a low- to medium-cost handheld microphone or headset mic (USB recommended).
• Choose a quiet environment.
• Pace yourself. Record a few sound bytes, test them, rerecord if necessary.
• Record at the time of day when your voice is strongest, and take regular breaks to keep your voice strong.
• Set realistic goals, and record the most important messages first.

Mary Ann Lowe at Nova Southeastern University in Ft. Lauderdale, Fla., an SLP who works in conjunction with the Kessenich MDA/ALS Center, recommends working with a partner who can help name and save the files following each recording. Because the process can be fatiguing, she suggests resting for about 30 seconds in-between recordings while the other person saves the file.

It’s worth the hassle, says Scott Jeffery, 48, of Trumbull, Conn., who received a diagnosis of ALS in September 2007. “I wanted to have at least some phrases in my own voice,” he explains. (For a description of how Jeffery banked his voice files, see "Creating Audio Files.")

“Like most other things pertaining to ALS, do this early, well before you think you may need it,” Jeffery urges.

“Degradation of one’s voice can sneak up on you. Make this a priority if you would like others to have a better time remembering the ‘real’ you.”