I’m thankful for the way technology is developing to improve the quality of life for people with ALS, including my husband, Todd.
Six years ago, I encouraged Todd to bank his voice while it was still strong. He signed up with one service and went to work recording various phrases that the company would then use to create his unique personal synthetic voice for a speech-generating device. The process was frustrating, as quality checks continually rejected his voice recordings. He eventually gave up.
Fortunately, Todd didn’t lose his voice, although he now speaks softly, especially when he’s not using his noninvasive ventilator. When he’s wearing his mask, his speech is a little nasal and harder to understand. His dictation software frequently confuses words with M’s and N’s, so words like “money” come out as “body.”
Now that Todd is paralyzed below the neck, daily life for him, and caregiving for me, are difficult. But I’m thankful we can still have good conversations. I’d miss hearing his voice if the day comes when he loses the ability to talk, and I’d miss hearing him tell me that he loves me.
A solution arrives
A few months ago I heard about Bridging Voice, an organization with the mission to “enable and empower people with ALS to communicate by removing the barriers between them and assistive technology,” according to its website. It partners with ElevenLabs to “allow for ALS patients to have their own AI Voice,” offering a free “Pro” account for people in the United States with a confirmed ALS diagnosis. Todd signed up for the service and submitted documentation from his doctor.
Within a few days, Bridging Voice approved Todd’s application and invited him to create an ElevenLabs profile. They asked him to submit a minimum of 10 minutes, but optimally three hours, of high-quality voice recordings, with low background noise and no music.
Fortunately, we have over four hours of his recorded voice from our audiobook, “Heavy,” and radio spots that our church ran on a local broadcast.
Todd consolidated all of the recordings into one file and uploaded it. After an initial processing, which took only a few minutes, ElevenLabs asked Todd to verify his voice. That was the only snag that he encountered, because his speech is not what it used to be. Todd submitted a request for help, and then tried again to verify his voice. He eventually got through the process after multiple attempts.
Another spouse caregiver shared on social media that her husband could no longer speak, but they too had hours of his voice recorded from when he was a trainer at his company, and they were able to get those recordings from the human resources department. When they reached the voice verification step, they needed to submit additional forms, including a statement from his doctor saying that his voice was unintelligible. The caregiver also had to prove her identity. After that, she was able to verify his voice.
When his AI (artificial intelligence) voice was ready, she got to hear her husband speak for the first time in a year and a half. “I have been listening to him for hours now,” she wrote. “It’s so great to hear him again!” She went on to say that he’s even figured out how to send his voice via text message. “He was so excited about that! He’s going to be freaking people out today.”
After a couple days, Todd received an email verifying that his voice is ready.
Todd logged back into the ElevenLabs. He typed, “Kristin, I love you.”
Todd’s AI voice sounds a lot like his old voice, and it’s pleasant to listen to. It’s is good to know it’s ready to go when it’s needed.
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