Some days were “cold-start” days. When the sun rose or before, my mom would lift my dad’s head off the pillow, fold each leg upward with a hand under each knee, and pivot his torso towards the edge of the bed. I would—on visits back to Charlottesville from New York...
The Hummingbird Fund is gaining notice which makes me really happy. Our mission is clear, and dare I say boldly stated: Ending ALS. Starting with all of us. The Hummingbird Fund stands on three pillars: access, innovation, and advocacy. We are on a mission to end...
"Contemplation is a long loving look at the real." --Fr. William McNamara Most mornings, weather permitting, I begin my day sitting here in our contemplation garden. I sit alone, or with Delta Mae, in contemplation, sipping coffee, hoping to center myself in silence,...
In a recent essay published in the New York Times, Mary Pipher reveals her double life. Perhaps you remember Mary Pipher, PhD., as the best-selling author of Reviving Ophelia: Saving the Selves of Adolescent Girls, and Women Rowing North. Or, maybe you remember her...
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...
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...
"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...
It's time to introduce you to the story of Lefty and Righty. The year is 1956. The place is the sweet womb of one Bernice Jean Galbraith Ogan, a 27 year old school teacher in Lorain, Ohio. You'll remember Lorain, for its famous, polluted Black River that flamed its...
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...