In a post titled Seeking Wisdom: Purpose and the TurboCharged Life, published in February, I introduced the ALS-TLS. The “TLS”, or turbocharged living scale, is a 12-item questionnaire meant to track personal growth, or flourishing in people affected by ALS (available...
9 a.m. The day begins with Peak Flow Testing in the Respiratory Therapy Department on the 5th floor. JimBob is an old pro at PFTs. PFTs are a hallmark data point for every patient with ALS, and the test is repeated at every ALS appointment. ALS causes neuromuscular...
Robb Elementary School, Uvalde, Texas, May 24th, 2022... When there are no more words to approximate the utter gut-wrenching anguish of a desperately grieving parent, whose child has been slaughtered, at school, during reading group, or a spelling test... When the...
The National Institutes of Health in Bethesda, Maryland is the world's largest center for biomedical research. The NIH is comprised of 27 clinical centers, among them the NINDS, or the National Institute of Neurologic Disorders and Stroke. The NINDS has an enticing...
Yesterday, May 12, 2022, my mom would have been 93 years old. Peggy and I were on the National Mall with Lefty and Righty planting 6,000 flags to honor people living with ALS, and people who have passed away from ALS. Each flag bore a name and a date of diagnosis. A...
"I hope you know how loved you are!" "You are so loved." "People love you." Over and over and over again I have received these sincere exclamations that are meant to remind me of the bountiful love that surrounds me. I am most often without adequate words in response....
My wife Peggy grew up on a small lake north of Chicago. The brick house had a long, sloping back yard bordered by giant oak trees and a split rail fence. A slightly wobbly, wooden pier jutted out into the lake, making it the perfect launch pad for children to come...
This is my first time having ALS. Consequently, it has been challenging to answer many of the questions put to me routinely. Quite often, I have no language to describe my physical sensations and emotions, much less the inward journey of my soul. When children are too...
A few weeks ago I was asked by the national ALS Association to take part in a day of lobbying congress to increase funding for ALS research. I was honored to be asked and believed I would have something to contribute. Over the years I have participated in the annual...
This year I decided to give up death for Lent. 40 days and 40 nights to put aside any thought about death. It would be like a Death fast. If you can give up chocolate for Lent, why not death. Jesus spent 40 days and 40 nights alone in the desert, fasting and facing...
Today, we mark two years since our beloved Jim passed away. Our Plews-Ogan family, including Rowan and baby Phoebe, Erin and Hal, and Will and Monika, are gathering for the weekend as we will every year. This year, we’re in Minneapolis. The time together has given us...