The Huffington Post recently ran this blog post: “Man With ALS Tells His Wife ‘I Love You’ Out Loud For First Time In 15 Years.”
I thought, how sweet. His first words were his expression of love for his wife (and primary caregiver). I had hoped for similar sentiments from Ariela. Maybe she would say something like, “I love you, mom.”
She was around twenty, when she received a new communication device, a system that came with hundreds of short phrases, as well as an alphabet with word prediction software. She needed to select the first few letters and a choice of words would appear on the computer screen. A small speaker by her ear gave her the cues, and at that time, she used a switch on her forehead to choose the word she wanted. She was quick to use the phrases, experimented with the alphabet, but had yet to spell a word.
Not long after getting the device, some of her friends came for dinner. One friend brought a boyfriend, a good-looking guy with a goatee. He sat down across the table from Ariela and smiled at her.
Ariela looked directly at him and said with her synthesized voice, “K” and “I” and then “Kiss.”
Now for all of you who participated in the Ice Bucket Challenge: Like Ariela, people with ALS rely heavily on assistive technology to communicate. Ariela was fortunate to have had private insurance pay for her communication device, commonly called Speech Generating Devices (SGDs). The man with ALS might have had coverage for his SGD through Medicare and/or Medicaid. However, changes in the last year are threatening this coverage. You can help. Contact your U.S. representative and ask for support for H.R. 628. Here are the details.