Of all the things Amyotrophic Lateral Sclerosis (ALS) takes away from patients, the ability to open your mouth and say “I love you” might be the most emotionally devastating.
The neurodegenerative disease causes weakness and eventual paralysis of all voluntary muscles, robbing sufferers of the ability to speak, eat and move. With no known treatment, the average lifespan of a person diagnosed with ALS is three to five years.
As the disease progresses, many patients are forced to turn to devices that help them communicate in a computerized voice. As clinician John Costello explains, this technology, while helpful, is crushingly limited in conveying emotion and tone.
“If you wanted to say to a loved one, ‘I’m so proud of you’ or ‘I love you’ or wanted to get across your sarcasm, things like that that are so representative of who we are, that’s really impossible with synthetic speech,” he tells PEOPLE.
Costello serves as the director of the Augmentative Communication Program at Boston Children’s Hospital – which has a new program that works to help adult patients with ALS retain their ability to communicate through a combination of therapies and technology. This includes a process called message banking in which patients record words and phrases in their own voices and upload them to tablets that they can use later to communicate with friends and family when they are no longer able to speak.
Giving individuals with ALS the ability to communicate in their own voices throughout the progression of the disease is a gift to both patients and their families.
“Our voices are sort of like our acoustic fingerprints,” Costello tells PEOPLE. “Hearing somebody’s voice immediately helps you connect with who that person is – to have that throughout the disease and after someone’s passing is really powerful.”
Patient Michael Hubner says the program has brought a “sense of joy” to an otherwise “stark and existential” disease.
Studying her own private cliché has become an obsessive hobby for the mom from Sudbury, Massachusetts, who has already recorded over 2,000 messages.
“I have a few little sprinklings of French in there and some Latin phrases – I just love language so much,” Hubner, 68, tells PEOPLE. “It’s a very poignant process.”
A neighbor recommended message banking after Hubner, a clinical social worker, was diagnosed with ALS in the fall.
“With this diagnosis, all you know is the endpoint – that it’s fatal – but you don t know what you’ll lose first,” she explains.
She says the process of collecting phrases has made her feel “like a squirrel putting away nuts for the winter.”
“I always thought I could just write and the sound of my voice wouldn t matter, but I’ve realized how tender and real it is,” she says. “I’m hoping it will be very comforting to be able to evoke language I once used.”
The experience has also invited the soft-spoken and caring woman to consider a future where she might need to be more demanding than she ever has.
She recalls being shocked by one section of the 47-page book of recommended phrases and topics patients are given.
“One of the things I could not imagine was there are phrases in there that are almost like how you would train a dog: ‘pick this up,’ ‘move that,’ ‘do that,’ ” she says. “Heck, I’m a social worker, I’ve never said anything like that in my life.”
However, she soon realized she might be facing a future where she will need to ask for help more. “Thinking through this was really helpful in imagining myself in the prison of immobility,” she says.
As Costello explains, the process of message banking transcends the practical outcome of allowing patients to communicate – it also allows them to keep parts of themselves.
“In a disease where everything is about a loss, everything is being taken away, communication and message banking is preserving and maintaining that piece of who the person is,” he says.
He adds that these messages remain a comfort to families long after their loved ones have died. It’s an idea he’s been promoting for a long time – and one he’s experienced himself.
“I recently lost my mom and I had a lot of voicemails she left me that I had never deleted,” he recalls. “The power of hearing her voice after she was gone and the glee I had in finding messages where she said ‘I love you’ or ‘I’m proud of you’ gave me this really rich personal sense of something I’ve been doing for many many families.”