“Keep off the path, Beware of the gate, Watch out for signs that say ‘hidden driveways.’ Don’t let the chlorine in your eyes, Blind you to the awful surprise, That’s waitin’ for you at, The bottom of the bottomless, Blue, blue, blue pool, You’re livin’ in your own private Idaho.”…
ALS is a life-changing diagnosis, and like many newly diagnosed patients, I was disappointed and frustrated at what felt like a standstill in medical progress against the disease. “If they can send humans into space, why can’t they cure ALS?” I’d lament, Now, 11 years later and with still…
“Kristin, I need my eyes wiped again,” my husband, Todd, calls from his office. I had just put drops in his eyes 20 minutes ago, hoping to address the incessant itchiness he was experiencing, and now we are back at it again. I get up from my desk, grab a…
“‘There must be some way out of here,’ said the joker to the thief, ‘There’s too much confusion, I can’t get no relief.'” When I first heard “All Along the Watchtower” by Bob Dylan, I thought, with my 9-year-old sensibility, that the song referred to a monolith of timepieces.
My husband, Todd, and I realized that massage could be beneficial for him even before he was diagnosed with ALS. Before we knew why his left arm was weak, I would massage his bicep and forearm, which helped him to better use it. Sometime after the diagnosis, his legs began…
“Dear Sir or Madam, will you read my book? It took me years to write, will you take a look? … If you must return it, you can send it here, But I need a break, and I want to be a paperback writer.” A story in a London…
Most folks know me through my column, “Living Well With ALS,” and perhaps don’t know that for the past three years, I’ve also been a co-moderator of the ALS News Today Forums. I thoroughly enjoy this responsibility, and to bring a bit of levity to this online job,…
I was struck by the wording in an advertisement in Quest magazine, a publication of the Muscular Dystrophy Association, that invited people “coping with amyotrophic lateral sclerosis (ALS)” to participate in an observational study. I think of “coping” as not only dealing with something difficult, but doing so…
“Cellophane shrink-wrapped, so correct Red dogs under illegal legs … She is watching the detectives ‘Ooh, it’s so cute.'” Elvis Costello’s homage to film noir crime drama, “Watching the Detectives,” inadvertently became a musical tipping point as 2021 bled into 2022. On Dec. 30, my pastor — and dear…
What’s my big wish as we all move forward with pandemic life in 2022? To live in a world with better communication skills. Specifically, to improve how we listen to each other. Because from where I sit, there’s a whole lot of telling going on and not enough waiting to…
