Snapshots of Life With ALS

“Thank God I didn’t have to cough this weekend,” my husband, Todd, said after his parents left. They had been visiting us from Minnesota. A couple months ago, his mom called as I was returning from the grocery store. “Todd can’t breathe. He needs help,” she said. He was doing…

Orion Corporation’s oral therapy levosimendan (ODM-109) failed to preserve lung function and overall functionality in people with amyotrophic lateral sclerosis (ALS), data from the Phase 3 REFALS clinical trial show. “We would like to express our warmest thanks to the patients, carers and investigators for participating in the REFALS…

Measurements taken of muscle using ultrasound could be useful in diagnosing or managing amyotrophic lateral sclerosis (ALS), a small study suggests. The study, “Application of Muscle Ultrasound for the evaluation of Patients with Amyotrophic Lateral Sclerosis: An observational Cross‐Sectional Study,” was published in Muscle & Nerve.

Last week, I had the pleasure of joining the Fox Valley/Lakeshore ALS Virtual Support Group in Wisconsin as their guest speaker. We had fun discussing ways to reduce stress during the ongoing crisis while we live with our ALS. During my presentation, I shared one strategy…

A small molecule called microRNA-182-5p (miR‐182‐5p) is involved in the detection of cell stress and in the survival of motor neurons, the cells progressively lost in people in amyotrophic lateral sclerosis (ALS), a study in mice showed. These findings shed light on the mechanisms behind ALS’ stress-associated nerve cell…

A new mutation in the FUS gene, which results in a shorter version of the FUS protein that cannot enter the cell nucleus to work as it should, may cause an aggressive from of juvenile amyotrophic lateral sclerosis (ALS), the case of an adolescent girl shows. The…

A single dose of an artificial microRNA — a tiny RNA molecule that is able to control the activity of certain genes — can lower the activity of SOD1, a gene commonly mutated in patients with familial amyotrophic lateral sclerosis (ALS), a proof-of-concept study shows. According to researchers,…

“I keep pulling it out — the old map of my inner path,” Joyce Rupp writes in her poem “Old Maps No Longer Work.” I was introduced to Rupp’s poem on a spiritual retreat five years ago. Her words resonated with me then, five years past my husband…

Changes in commonly tested blood biomarkers in people with amyotrophic lateral sclerosis (ALS) may be associated with faster disease progression and an increased risk of mortality, according to a recent study. Given the easy access and low cost of these standard…

 “Oh, I used to be disgusted and now I try to be amused.” Those lyrics from the Elvis Costello song “(The Angels Wanna Wear My) Red Shoes” are an apt description of the journey that my perspective…