communication

Our family had another close call recently that caused us to our reexamine our methods of emergency communication. Due to ALS, my husband, Todd, is completely paralyzed in all his limbs and has low lung function. He is dependent on noninvasive ventilation to breathe and to talk. Without…

My husband, Todd, is paralyzed because of ALS, so I transfer him from bed to wheelchair, and from wheelchair to the toilet, using a sling and overhead lift. This morning, as I moved him from his bed to the wheelchair, he told me, “My fingernail is cutting into…

A clinical trial is evaluating whether a new, implantable brain computer interface (BCI) is able to decode brain signals — ones research has shown are related to tasks relying on the hands or speech — and transform them into actions for people with neurological disease or injury. Up to 15…

“By the rivers of Babylon Where we sat down And there we wept When we remembered Zion But the wicked carried us away in captivity Required from us a song How can we sing King Alpha song In…

What’s my big wish as we all move forward with pandemic life in 2022? To live in a world with better communication skills. Specifically, to improve how we listen to each other. Because from where I sit, there’s a whole lot of telling going on and not enough waiting to…

Last week, I stepped onto my soapbox (mine has special safety handrails) and voiced my opinion about an issue that’s been bugging me for several years. It’s a problem I share with about 7.5 million other people who have trouble using their voices and cannot get voice-activated devices to…

A lightweight, wearable sensor is being developed that can detect minute facial movements and translate them into messages, potentially helping people with amyotrophic lateral sclerosis (ALS) communicate more easily. Once produced in mass, each device is also expected to cost about $10. The sensor is described in the study…

A research project underway at the University of Rhode Island (URI) aims to help people with advanced amyotrophic lateral sclerosis (ALS) and other severely limiting disorders communicate better by interacting with a computer that can translate their thoughts. Among the consequences of motor diseases like ALS is the…

The ancient Greeks first introduced the term “parrhesia,” meaning “free speech,” around the end of the fifth century B.C. From a literal perspective, ALS has taught me that the concept is a misnomer. Like nearly everything else, there is…

Whether I’m at a social gathering or in the middle of a lighthearted chat in the grocery store, there’s no doubt about it — people can say the darndest things! This is particularly true when they’re stymied over what to say to me about my ALS. Don’t get me wrong.