Oh My God — I Have ALS

The lyrics to “God Shuffled His Feet,” a song by the Canadian band Crash Test Dummies, portray God as indifferent to our struggles. When he speaks of someone perhaps having “some strange disease,” the people…

Amyotrophic lateral sclerosis (ALS) patients who never regularly engaged in sports or physical activity have more extensive metabolic changes in the brain that likely help them to better cope with the disease’s neurodegenerative processes, a study from Europe suggests. These changes can reflect either greater metabolic activity in a…

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the…

Last week, I joined about 20 other ALS patients in attending an online meeting on Zoom. While the speaker scrolled through her slide program, I thought, “Wow, no parking lots! We’re all here and no one had to deal with a parking lot!” Maybe I should explain my negative association…

The levels of certain indicators of iron status, namely ferritin and transferrin, are altered in patients with amyotrophic lateral sclerosis (ALS) relative to healthy controls, suggesting a possible link between iron metabolism and ALS, a study has found. The results, “Abnormal Serum Iron-Status Indicator Changes in…

The National Institutes of Health (NIH) is investing $25 million over five years in a program to encourage innovative research that deepens our understanding of  amyotrophic lateral sclerosis (ALS), with a goal of better treating the disease. Called Accelerating Leading-edge Science in ALS (ALS2), the initiative aims at…

The National Institutes of Health (NIH) has awarded a $3.3 million grant to researchers at two universities to advance studies of TDP-43, a protein that builds to form toxic clumps in people with amyotrophic lateral sclerosis (ALS) and Alzheimer’s disease. Their goal is to better understand how…

I thought my husband, Todd, should quit driving long before he was ready to hang up the keys. When ALS had weakened his left arm and right hand, he would get gas from a full-service station. I questioned whether he should be driving when he couldn’t pump gas for himself.

Caffeine, an antioxidant with neuroprotective properties, was seen to promote the normal development of lab-cultured motor neurons isolated from a mouse model of sporadic amyotrophic lateral sclerosis (ALS). Similar results were also found with nicotinamide adenine dinucleotide in its oxidized form (NAD+), a metabolic cofactor…

“Without your love, I’d be nowhere at all. I’d be lost if not for you.” The inspiration for that Bob Dylan song is a mystery to the general public. However, the lyrics come close to capturing my indebtedness to…