photos courtesy of Landa Gayle Strum/originally published Winter 2018
It can be hard to stay optimistic when facing the life-altering diagnosis of ALS. But for Hal Mardis and others who suffer from the terminal illness, technology continues to offer hope and help reclaim a voice for the voiceless.
While on a cruise in November 2016, Hal began noticing weakness in his hands and arms.
“I couldn’t button my shirts and was having trouble opening lids and bottle caps,” he says.
“He was getting unstable when walking and was dropping things,” adds Hal’s wife, Donna Mardis.
After several tests, doctors thought Hal might have had a mini stroke, but it wasn’t until a family friend helped get Hal into Mayo Clinic in October 2017, that they were finally given the diagnosis of ALS.
According to Mayo Clinic, Amyotrophic Lateral Sclerosis (ALS)—also known as Lou Gehrig’s disease—is “a progressive nervous system (neurological) disease that destroys nerve cells and causes disability.” There is no known cause for ALS and, unfortunately, no cure. Currently, there are only two drugs used to slow down the progression of the disease, which the ALS Association says differs from person to person.
“It starts robbing you of movements,” says Hal. “It feels like you’re slowly melting.”
He began losing movement in his hands, arms, and eventually, his legs. It wasn’t until recently that Hal started noticing problems with his speech as well.
“With ALS, there’s always something new you’re having to accept daily,” says Brandi Nickles, Care Services Director for the Mississippi chapter of the ALS Association. “My goal is to try to keep people ahead of the beast.”
Nickles, who helped provide Hal with a wheelchair and other necessary equipment, suggested the Mardises look into voice banking.
Voice banking is a system of recording a person’s voice so that those at risk of losing their speech from diseases such as ALS can communicate once their ability to speak is gone. One voice banking system, ModelTalker, became popular through Team Gleason, an organization founded by former New Orleans Saints football player, Steve Gleason.
Gleason was diagnosed with ALS in 2011 and started the organization with the goal of finding a cure and helping others cope with the disease. He was able to use voice banking to create the synthetic voice he communicates with today. Since part of their mission is providing communication technology to those with ALS, Team Gleason covered the ModelTalker registration cost for Hal.
The Mardises enlisted the help of friend Tom Edwards, worship leader at First United Methodist Church of Clinton, to help with the voice bank recording.
“I’ve known their family for a while now, and I was happy to be able to use my skillset to help in some way,” says Edwards.
To qualify for ModelTalker, Edwards recorded Hal saying a series of 30 phrases that were then tested for volume, speech rate, and pronunciation. The process requires absolute silence, so Edwards created a makeshift recording studio in the Mardises’ bedroom.
Once Hal’s voice was determined strong enough, Edwards came over regularly to record. Each time, ModelTalker prompted Hal to repeat a series of nouns, places, and phrases, many of which were from books such as The Wizard of Oz or White Fang.
But they also wanted to be sure to include anything Hal was likely to say on a daily basis. This included family names, places he often visits, things he needs daily, and, of course, some of his favorite catch phrases.
“His favorite answer is ‘noooooo,’” says his son Scott Mardis. “Or if we ask him for anything, ‘I’m broke.’”
Hal’s daughter-in-law, Kimberly Mardis, also made sure to tell him the name of her unborn child so he could go ahead and record himself saying his grandson’s name.
The voice banking took a little over a month to complete. At least 8 sessions of 300-400 phrases for 2-3 hours at a time totaled to over 1,600 words.
The constant speaking was exhausting for Hal, who was already beginning to lose some of his lung capacity. Edwards says it was almost a race to get it finished since the quality of Hal’s voice changed week to week.
“I enjoyed getting to spend time with him,” says Edwards. “He’s such a great guy, and it was a bittersweet project to work on.”
All of Hal’s voice recordings will be logged onto a tablet that will allow him to communicate once his speech is gone. Using head movements or eye gazes, he will be able to direct the computer to say whatever he’d like. Devices like the one Hal will have read the eye’s pupils to determine what someone is looking at on the screen, and a form of predictive text is built in as well. Hal will also be able to access the internet with the device.
Edwards says he was amazed at how simple ModelTalker was to use. “It’s so amazing that it’s able to capture his actual voice,” he says. “Every sound will be a sound he made with his own vocal chords.”
“It may not be perfect,” says Hal. “But it will be my voice.”
Hal jokes about the advanced features that will enable him to speak in any language and choose even the most unique dialect. “I’m trying to convince them to let me talk like Brad Pitt,” he says.
“This is helpful for anyone who’s losing their voice, not just ALS patients,” says Donna.
Donna and Nickles stress the importance of voice banking early on.
“You never want to be without your voice,” says Nickles. “It’s important to be aggressive with the disease and to prepare.”
Hal and Donna credit God, as well as their church, friends, and family for helping them get through this difficult time.
Since ALS can be an isolating disease, Hal says visiting those with ALS can make all the difference and that his weekly guests have been a gift.
“I can’t tell you how many people have come out to see us,” says Donna.
This past September, Hal’s friends and family supported him by taking part in the ALS Association’s Walk to Defeat ALS. Team “Hal’s Pals” alone raised over $19,000, which goes to ALS research and helping provide families with needed equipment. Hal also won “Most Money Raised” and “Most Spirited.”
“They were the top fundraising team,” says Nickles. “The huge crowd in green shirts who came to support Hal showed how much he is loved.”
Hal’s Pals also wore bracelets with the verse that has been an encouraging reminder for the Mardis family: “Be joyful in hope, patient in affliction, faithful in prayer” (Romans 12:12).
“Our faith in God is what has brought us through all of this, but it’s still been hard,” says Donna.
“He’s taking it better than most of us would,” says Hal’s son, Josh Mardis.
“He’s always positive and encouraging other people,” adds Kimberly. “He’s still a constant friend to so many and always has an open door policy.”
“To see Hal’s faith and strength through his journey has strengthened my own faith,” says Hal’s former caretaker, Jeremy Freeman. “His character is inspiring.”
To find out more about ALS and voice banking, and to donate to ALS research, go to teamgleason.org and webla.als.org.