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A diagnosis of ALS or Lou Gehrig's disease brings within a long list of debilitating symptoms. For most people, it means the nervous system will deteriorate until the body is completely immobile. It also means the loss of speech.
Well, now, a program in Seattle allows patients to record their voices to use later when they can no longer talk on their own. From member station KPLU, Gabriel Spitzer has the story.
GABRIEL SPITZER, BYLINE: Most ALS patients live only a few years after diagnosis, but Carl Moore is the exception. He's a former helicopter mechanic from Kent, Washington, who was diagnosed 20 years ago.
CARL MOORE: You can hear my three-shots-of-tequila speech. And it does get worse as I get tired.
SPITZER: So about five years ago, before that slur crept in, he began recording hundreds of messages and uploading them to the speech device he'll someday rely on. The machine looks like a chunky tablet computer, and it would normally sound like a robot. Now, it will sound like Carl.
MOORE: It's almost like preserving a piece of yourself. I've taken auditory pictures of who I am.
SPITZER: Many of Carl's banked messages are practical.
MOORE: I feel tired.
SPITZER: Many are funny.
MOORE: You know what, your driving sucks. So I can still be a backseat driver.
SPITZER: And some are both.
MOORE: Hey, my butt itches. Would you give it a bit of a scratch?
SPITZER: Carl's kind of snarky. Some of his messages can't even be played on the radio. It's a part of his personality he's rescuing from the disease. And not just for himself, message banking is also for caregivers, like Carl's wife, Merilyn.
MERILYN MOORE: If it's a computer voice, I think it's harsh. Whereas if it's his own voice, I can feel like he's actually speaking those words.
JOHN COSTELLO: If you wanted to say something like, you're the love of my life, having that in synthetic speech is devastating.
SPITZER: John Costello is a speech pathologist at Boston Children's Hospital, and he's credited with inventing the clinical use of voice banking. He says it can make a big difference in people's quality of life. He recalls a recent letter from a patient's wife.
COSTELLO: She was a widow of six days. She wrote to me that the work that we did was the only bright forward movement. Everything was about loss, except the possibility of communication.
SPITZER: The person helping Carl and Merilyn Moore preserve that possibility is Roberta Kelley, a speech pathologist at Seattle's Virginia Mason Hospital. She says ALS is really a relentless march toward disability and death. But this lets people snatch something back from it.
ROBERTA KELLEY: It gives the patient something to do when they have no control over the disease.
SPITZER: And yet, for all its benefits, Kelley says, in her clinic, only a tiny fraction of patients actually do it.
KELLEY: The ones that don't do it can't deal with it. They don't want to think about using an electronic piece of equipment to talk. So most of them nod, smile and do nothing.
SPITZER: Kelley says, heartbreakingly, many come back later hoping to record their voices after it's far too late. Carl Moore, on the other hand, brings a mechanic's pragmatism to the project, and he's clearly having some fun too. Besides letting him razz Merilyn for years to come, the recordings will become an archive for her.
MOORE: I see this also as a legacy, which will feel like his presence with me even after he's gone.
SPITZER: So Merilyn wants to make sure Carl has banked the really important things, which raises the question: Where, among the witty barbs and the practical stuff, were the messages of tenderness, of intimacy?
MOORE: My conversations are mostly sarcastic. It's wow. She asked me before we left if I had the phrase I love you, and I realized I didn't.
SPITZER: Do you think you'll take another run at it at some point?
MOORE: Yes, sooner than later. I can see the look in my wife's eye.
SPITZER: The trouble, he says, is his voice has already gone downhill.
MOORE: We'll see how it works out. I'm not comfortable with recording my voice as it is.
MOORE: I think that it's important that we capture you as you are now. We love you as you are now just as much as eight years ago.
MOORE: So I will record, yes, dear.
SPITZER: After our conversation, Carl said he dug back through his hard drive and discovered he had recorded himself saying I love you. Now, he'll add it to the device that will someday speak for him.
For NPR News, I'm Gabriel Spitzer in Seattle.
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