Choosing how to communicate about ALS — and when

The summer and autumn of 2018 brought uncertain and scary moments for my late husband, Jeff, and me as he battled progressing symptoms of what would later be diagnosed as ALS. His symptoms had begun with the seemingly benign experience of foot drop, which was frustrating but not painful.

Echo! Can You Understand Me, Now?

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…

Talking Trash with ALS

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…