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…
Columns
“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…
Seeking Input for a Novel Idea
“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…
On New Year’s Eve, I took our kids and their friends bowling. My husband, Todd, who has ALS and is paralyzed, stayed home and used his computer. As we arrived at the bowling alley, I received a text from Todd saying that he needed my help with his…
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