BLAIRSTOWN, N.J. — ALS has gradually robbed 68-year-old Michael Hubner of arm and leg strength. But she’s determined to preserve her voice.
“I think that my collection of phrases finds the center between the words and phrases I love and the things I know I’m going to need to say,” Hubner said of her voice recordings.
Before her speech becomes severely impaired, Hubner turned to speech pathologist John Costell at Boston Children’s Hospital. He gives patients a voice recorder and tells them to think of phrases that reflect who they are.
“Recording messages in your own voice is a huge way to not lose that self, to not give yourself fully to the disease, when at every turn the disease is taking,” Costell said.
About 6,000 people a year are diagnosed with ALS, also known as Lou Gehrig’s disease, a disorder that affects the nerves and muscles and for which there is no cure.
ALS has also taken a lot from 42-year-old Todd Quinn. Until four years ago, he was a home builder, an avid outdoorsman and a nature photographer.
He was one of the first ALS patients to bank his voice, enabling him to talk to his wife, cat and his son, Sawyer. A computer recognizes which words he is looking at on a screen, allowing him to pick the phrases he wants.
“It just always brings me back to when we first got diagnosed, when we had that voice,” Quinn’s wife said of his voice recordings. “Can’t say that I don’t miss that. So I do miss it, but I feel more than anything appreciate that we have it.”
Quinn said he wishes he had saved more messages, which makes the messages he has all the more precious.