photo by H.Heydemann
I saw this story in the Huffington Post recently:
"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 20, when she received a new communication device, a sophisticated 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 she used a switch on her forehead to choose the word she wanted. She was quick to use the phrases, but had yet to spell a word.
Not long after getting the device, some of her friends came for dinner. A lot of chatter and laughter filled our home that night. One friend brought a boyfriend, a good-looking guy with long hair and a goatee. He sat across the table from Ariela and smiled at her. She looked directly at him. "K" and then, "I" and then, "Kiss," she said with her synthesized voice.
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.