Jalal’s Journey: How Technology Makes Him Heard

Jalal Burton lost his physical voice to amyotrophic lateral sclerosis (ALS), but he’s not silent.

He’s still got corny dad jokes and still talks with his wife Bea and their four children about everything from dinner to when the kids need to be home.

His voice connection is adaptive computerized communication technology secured with the help of Lehigh Valley Health Network (LVHN)’s ALS clinic, part of Lehigh Valley Fleming Neuroscience Institute. A computer tracks Burton’s pupils as his eyes focus on letters on an on-screen keyboard. On the back of the computer, the words spelled by Jalal appear and are spoken by the computer voice.

With the technology, he also can use a cell phone to call or text, use the internet, control the TV in the room, play virtual chess, and more. Five years into his ALS diagnosis, the 46-year-old former wholesale club manager now has extremely limited movement. “It’s my connection to the outside world,” he tells a visitor of his hi-tech communication link. It’s an emotional statement, and a tear descends his cheek. Bea is quick with a reassuring word and a tissue to dab the tear.

ALS, also known as Lou Gehrig’s disease, is a progressive and fatal neurodegenerative disease that affects specialized cells called motor neurons in the brain and spinal cord. There is no cure. As ALS progresses, it affects voluntary muscle movement and people can lose the ability to do many things, including speaking, eating, moving and breathing. Those who’ve had ALS include famed physicist Stephen Hawking, who died in 2018. Former San Francisco 49ers receiver Dwight Clark announced in 2017 that he had been diagnosed with ALS.

Most people who develop ALS are between 40 and 70. About 5,000 people are diagnosed with ALS each year in the U.S.

The Burtons have formed a bond with LVHN speech-language pathologist Amanda Cuth, who was instrumental in helping the couple get the communications technology for Jalal a few years ago. Cuth, who works at the ALS clinic on the LVH–Cedar Crest campus, visits Jalal on a regular basis as part of her outreach.

“Speech changes over time as the disease progresses,” explains Cuth, who’s been with the ALS clinic for nearly a decade. “There is a huge range of technology out there for someone who is having difficulty communicating.”

Cuth is an expert on the communication technologies available to those such as Jalal and is a go-to resource for families who use LVHN’s ALS clinic, which started about 20 years ago. LVHN has the region’s only ALS Association Recognized Treatment Center.

Cuth says she works with patients and their families to find the best fit for their situation. Not all ALS patients experience the same symptoms or the same symptoms at the same time.

Cuth says she often introduces ALS patients and their families to voice and message banking. In voice banking, a patient who still can speak can record a variety of sentences, which are then used to synthesize a computer voice that mimics their voice. “By people recording their own voice, it makes it so much more personal. We can use that down the road on a communications device if they would need it,” she says.

Message banking is the recording of specific messages, such as “I love you,” that can be employed by the ALS patient as their speech worsens. Cuth says some families do message banking, so they have the voice recordings forever.

Jalal got his computer about a year into his diagnosis but couldn’t take advantage of voice and message banking because of the condition of his voice.

“It is hard to bring it up to families,” Cuth says. “Sometimes people have done research on their own, but most are not aware. I let them get used to the diagnosis first.” Cuth says the voice and message banking can be considered a safeguard, something to have in case it’s needed. She adds it’s not a guarantee an ALS patient will need a communications device or want one.

Cuth says health insurance customarily helps cover some of the cost for communications devices for ALS patients. She says foundations often step in to cover deductibles or balances, including the Team Gleason Foundation, formed by former NFL player Steve Gleason, diagnosed with ALS in 2011.

Helping ALS patients and their families is both fulfilling and tough, Cuth says. “The more I’m in the ALS clinic, the more we get to know families and patients and it’s hard because you know the outcome. There is no cure. We know what they are going through and what’s going to happen.”

At the ALS clinic, held one day a week, Cuth says those who remain mobile enough come to see a variety of caregivers, including a social worker, dietician, respiratory therapist, physical and occupational therapists, a speech therapist, neurologist and a neuropsychologist. There is a team mentality and clinic staff and ALS patients and their families form quick bonds. “To be invited into their lives at this horrible time. It’s incredible that they let us in, and we get to know them,” she says.

The Burtons cherish their relationship with Cuth and count her among their extended family. “She is so important,” Jalal says. “She goes the extra mile, and I don’t know what we would do without her.”

Bea says she, Jalal, and the entire family won’t “wallow in sadness” over Jalal’s condition. A techie before ALS, Jalal has embraced the communication technology and is making the most of it. Bea says the technology allows Jalal’s personality to continue to shine. He tells a visitor he used his personality and sense of humor to get Bea to marry him, drawing a hearty laugh and a smiling denial from Bea. Jalal sports a broad smile in return.

Jalal’s a man of faith. On one of the walls of his room, Bea hung supportive Bible verses to help with the tougher days. On the same wall are pictures drawn by their children in their younger days. One depicts Jalal earlier in his diagnosis when he used a walker.

Bea says Cuth is a “godsend” and always available, as is everyone with LVHN neurology. “I love the whole group. They really help you out,” she says.

“One doesn’t realize how important it is to verbally express oneself until you lose the ability to move, if that make sense,” Jalal says. “I am attached to the world through this computer. Otherwise, everyone is guessing what I need.”

Jalal’s ability to communicate has made a tough situation better, if just in one respect. “It is hard, don’t get me wrong,” Bea says. “But prayer, my mother and my family and friends, have been helping out a lot and that makes a difference.”