breathing

Last week, I sat in the dentist’s chair filled with gratitude. I know. It’s bonkers. But I couldn’t help myself. I’m grateful knowing that if I have to live with ALS, it’s happening at a time when advances in technology and accommodations help me deal with its many challenges.

An at-home music therapy program aimed at improving speech, swallowing, and respiration in people with amyotrophic lateral sclerosis (ALS) was well-tolerated and feasible, according to a small pilot study. While the pilot study (NCT03604822) was not designed to test the program’s effectiveness, collected data suggest that the music…

ALS life sure involves a lot of sitting. Although I keep myself busy with daily projects, most of what I do has me sitting at a computer. Added to that, I sit when eating meals, watching TV, riding in our van, and riding my mobility scooter. That’s a whole lot…

Figuring out how to manage each stage of ALS for my husband, Todd, is a challenge. Each time Todd experiences another loss, I scramble to find answers and resources. Our latest challenge was trying to get proper support for Todd’s Astral noninvasive ventilator. It doesn’t help that we…

I set my husband, Todd, up on his computer with his HeadMouse and sip-and-puff clicker. ALS has compromised his breathing, so I put on his noninvasive ventilator. I call my mom, who lives next door. She will keep her mobile phone in her pocket. If Todd needs anything, he…

Our daughter, Sara, is working on several pieces for an upcoming choir festival. One selection is the song “My New Philosophy” from the musical “You’re a Good Man, Charlie Brown.” The other evening, as our family gathered for dinner, Sara sang the lyrics in which the character Sally tries…

I’ve been worried about leaving my husband, Todd, who has ALS, alone after his close call with his breathing last week, but he said he would be fine while I ran to town. I needed to pick the kids up from school and take our daughter to a dentist…

I love daily routines. For me, having a set of habits and to-do projects waiting to be tackled helps me feel grounded when the world’s events are in turmoil. And more importantly, daily routines keep my mind focused on things other than my ALS. What I don’t love are disruptions,…

The National Institutes of Health (NIH) has awarded a $1.9 million grant to University of Missouri (MU) researchers to study ways of preserving essential functions like swallowing and breathing in people with amyotrophic lateral sclerosis (ALS) and other motor neuron diseases. This four-year grant was awarded to…

The majority of patients with amyotrophic lateral sclerosis (ALS) report wanting new treatments to stop their disease’s progression and so improve breathing function, muscle strength, and mobility, according to the results from a self-reported online survey of ALS patients and caregivers. These findings may help define future guidelines for the development…