Quality of Life

Transcranial stimulation — a noninvasive technique that delivers low electrical currents to the brain to fine-tune nerve cell activity — improved muscle strength and quality of life in people with amyotrophic lateral sclerosis (ALS) in a small clinical trial. Researchers also found that a two-week course of transcranial direct…

People with amyotrophic lateral sclerosis (ALS) report significant changes in lifestyle after their diagnosis, but still have an acceptable quality of life and low stress levels, according to a survey conducted across nine European countries. When asked about new drug development, participants most commonly prioritized treatments that slow…

As part of its Tribute Awards, the Muscular Dystrophy Association (MDA) will honor Alan Pestronk, MD, co-director of the MDA & ALS Care Center at Washington University School of Medicine. The Tribute Awards recognizes those “who have been tireless in their efforts” to support members of the neuromuscular disease…

“What if Todd had aspirated while you were on your spring break trip?” someone asked me. That’s the type of question I’ve asked myself many times over the last decade since my husband, Todd, was diagnosed with ALS. What risks are we willing to take to…

Early use of Biogen’s tofersen significantly slows disability progression, as well as a decline in lung function, muscle strength, and quality of life in amyotrophic lateral sclerosis (ALS) patients with mutations in the SOD1 gene, compared with a six-month delay in starting treatment. These benefits were accompanied by pronounced and sustained…

I’d like to send a hearty congratulations to us all! Why the celebration? Well, we’ve survived the first three months of the year in a world that continues to surprise and challenge us. Plus, for many who live with amyotrophic lateral sclerosis (ALS), making it through another three months justifies…

More than half of the people with amyotrophic lateral sclerosis (ALS) responding to a survey were dissatisfied with their quality of life and pessimistic about their future. The U.S.-based survey was conducted by ALS News Today. Nevertheless, the vast majority of respondents reported to be satisfied with their…

Most of the initial amyotrophic lateral sclerosis (ALS) patients enrolled in Cytokinetics’ COURAGE-ALS Phase 3 trial testing its experimental therapy reldesemtiv have moderate-to-fast progressing disease at study entry. An analysis shows that, as intended, COURAGE-ALS is increasing the proportion of patients with rapidly progressing disease compared with the…

My husband, Todd, began monitoring his breathing after he was diagnosed with ALS. We were told that he’d need to have surgery to insert a feeding tube before his forced vital capacity (FVC) dipped below 50%, and so he had it measured every few months at an ALS clinic.

Once in a while, a newly diagnosed ALS patient will reach out to me and ask for help in their adjustment to life with ALS. I’m always happy to share resources, motivation, and tips, and usually, I begin our online friendship with the question, “Tell me a little about yourself?”…