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Learning New Limits With Ongoing Decline

I’ve been worried about leaving my husband, Todd, who has ALS, alone after his close call with his breathing last week, but he said he would be fine while I ran to town. I needed to pick the kids up from school and take our daughter to a dentist…

Musings About the Language of ALS

During my professional years working in a hospital environment, we had to be familiar with using medical jargon. Some words sounded odd to my nonmedical ears, while others had double meanings. A few favorites I still remember are “idiopathic,” which refers to something with an unknown cause, and “unremarkable,” which…

Finding the Good in Being

In “12 Rules for Life: An Antidote to Chaos,” Jordan Peterson writes, “People can survive through much pain and loss. But to persevere they must see the good in Being. If they lose that, they are truly lost.” Now that my husband, Todd, has ALS, I am more attuned…

Technology Blazes a Trail Out of the Wilderness

“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.”…

We in the Rare Disease Community Can Learn From Each Other

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…

The Secret to Finding Balance as a Caregiver

“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…

The Soulful Benefit Arising From Punching a Clock

“‘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.

Discovering the Benefits of Massage

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…