Adaptive Technologies Giving Communication Options to People With ALS

The progressive neurodegenerative disease amyotrophic lateral sclerosis (ALS) impacts voluntary muscle movement and, ultimately, the ability to speak, swallow and breathe. At Lehigh Valley Health Network (LVHN) ALS Clinic, the widespread effects of motor neuron degeneration are addressed in afternoon-long patient visits by a multidisciplinary team of specialists.

Amanda Cuth, MS, CCC-SLP, a speech-language pathologist, guides people who are experiencing communication difficulties by providing a range of adaptive technology options to meet individual needs and instructions for integration into daily life. While there is no treatment to stop or reverse ALS progression, the region’s only ALS Association Recognized Treatment Center – part of Lehigh Valley Fleming Neuroscience Institute – helps people manage symptoms. Perhaps the most devastating of these is losing one’s voice.

“We’ve been doing this for many years and often hear that you don’t realize how much your voice is a part of you until it is changing or gone,” Cuth says. “To still have a way to participate in conversations with your family or tell your kids you love them is so critical.”

Cuth, an expert in augmentative and alternative communication (AAC) devices, notes there are a wide range of options for those having difficultly communicating – from basic low-tech tools to smartphone apps to sophisticated devices that track eye movement in facilitating expression. LVHN ALS Clinic offers these solutions for trial and loan.

“I see patients every few weeks between clinics, getting to know them and using a personal touch to [together] determine what best fits their needs and current symptoms,” she says.

For example, in addition to facilitating technology that uses eye tracking in advanced disease cases, Cuth works with people on voice banking – to create a custom, synthesized voice – and messaging banking, which records specific, meaningful phrases.

“If they can’t use their voice [later], these devices or apps will do it for them,” she says.

In addition to a speech-language pathologist visit, LVHN ALS Clinic patients may see a respiratory, physical or occupational therapist; neurologist; neuropsychologist; social worker; and/or dietitian – all in a three-hour window during the weekly Tuesday clinic, which patients attend every two to three months. This “one-stop shop” for symptoms management is a comprehensive and convenient setting for ALS care.

“We all collaborate and meet together after patients leave,” Cuth explains, noting that when she began treating people with ALS, they ventured outside the network to explore AAC technologies.

“There was a clear need to have this [service] in house, and here, patients can stay with someone they know from the clinic and get the help they need,” she adds.