Mutations causing a complete loss of function of the SOD1 gene lead to severe motor problems, a case study reports, calling for caution in research into silencing this gene as a  potential treatment for people with amyotrophic lateral sclerosis (ALS). The case study, “SOD1 deficiency: a novel syndrome…

Life with ALS is absurd when I think about it. It’s so different than it was before the disease, and with each setback, life gets even stranger. We tried to maintain a normal life, but nothing seems normal about feeding one’s husband in a restaurant. Just a year ago, Todd…

Consider the wheel. Nothing comparable exists in nature. Its conception was not the byproduct of observation and imitation, but a 100 percent original human brainstorm. Evidence suggests that the first wheels were used for making pottery around 3500 B.C. in Mesopotamia. They weren’t employed for locomotion until 300 years…

My husband is one of those people who attacks projects from beginning to end with a laser-like focus. Me? Oh, I get things done — well, eventually. Distractions, the tendency to overcommit plus a curiosity to follow “the next big thing” all contribute to my meandering approach. Really,…

Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, especially for rare disorders, has a ways to go in the United States. No state today tests for all 35 disorders recommended under a federal screening panel, and even in those that come close, rare…

Six years ago, my husband, Todd, still had use of his weakened right arm and was able to walk, but he had been falling more frequently. After one fall, we had to call my cousin because Todd wasn’t able to get himself off the floor and I didn’t have enough…

Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of teen births per 100,000 teenage girls, and has the nation’s third-highest rate of uninsured residents — with 13.9% of all Oklahomans lacking health coverage. As if…

While rehabilitation programs that include exercise are helpful to amyotrophic lateral sclerosis (ALS) patients, no extra benefit was seen by raising the number of weekly sessions from a standard two to five, a small study from Italy reports. The study, “High‐frequency motor rehabilitation in amyotrophic lateral sclerosis: a randomized…

When I was brainstorming ideas for the name of this column, before settling on “Joyful Sorrow,” I asked my husband if he had any ideas. “How about ‘The Caregiver’?” Todd suggested. I dismissed it out of hand. He pushed back. “I think it’s a good name. It’s descriptive and it’s…

I always have had a fascination with words. It stems from my mom and dad, both of whom instilled in me a voracious appetite for reading and writing. Letters from my grandfather blending humor, pathos, self-deprecation, irreverence, sobriety, fact, and thoughtful opinion cemented the notion that words, carefully pieced together,…