As you might imagine, my notions of work and purpose changed radically when I retired prematurely due to ALS. I had spent my adult life describing my work as a vocation, because I derived a deep purpose from my role as a nurse and as a pediatrician. I experienced a...
This morning I made William laugh using eyegaze. This is very good news. My ability to be understood these days, even by those closest to me, is dicey at best. The weakened muscles of my face and mouth limit comprehensible articulation, and weakened breathing limits...
Recently I took part in a Tim Lowry ALS panel for occupational therapy (OT) students. As panelists we answered many of the questions you might anticipate about how OT has improved our lives with ALS. I was happy to tell the students about pencil grips, rocker...
Tender soothing rain all night last night lingers unto morning like sweet tears to begin this day anew and whole. I did not grow up in a culture of sweet tears, the kind that flow gently down the cheek, as plainly and innocently as a smirk might linger while...
ALS is always a grim tale to tell, and to hear. Sorry. What if we could tell a parallel ALS tale that was the opposite of grim? I have an idea. Read on. ALS, Amyotrophic Lateral Sclerosis, is generally defined as a progressive, neurodegenerative illness with no...
With the advancements of science and technology, it is now possible to reliably diagnose rare conditions early in pregnancy. Likewise with the explosion in genetic analysis, we can now identify the cause of previously uncharacterized syndromes. Whereas these...
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...