The gift of presence made us less isolated while living with ALS
When my late husband, Jeff, was diagnosed with ALS in 2018, I remember reading that it could be an isolating disease. I didn’t understand that at the time; our days were filled with…
Thunder Road — Juliet Taylor
Juliet lost her husband, Jeff, to ALS in 2020, 19 months after his diagnosis. Together Jeff and Juliet enjoyed being on the water, live music, pets, and traveling. She was his primary caregiver, and finds meaning and healing in helping individuals and families who are living with or have lost a loved one to ALS. Juliet lives with her rescue pup, Sailor, on the eastern shore of Maryland, in a home that Jeff chose because it reminded him of his beloved Green Lake in Michigan.
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ALS panel series shares information, insight, and hope
When my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I’d heard of the disease only peripherally. Like many, I’d completed the Ice Bucket Challenge in 2014 without…
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Recognizing and managing the fear that ALS triggers
A few weeks ago, I was driving out of my neighborhood when I noticed a sheriff’s car passing me slowly, headed in the direction I’d come from. Reflexively, I made a U-turn and began…
How unbroken family bonds became my pillars of strength
On my first date with my late husband, Jeff, he rhapsodized about his family. He was the middle child of seven, and it was clear from the start that his brothers and sisters were…
What do we do when ALS caregivers become injured or sick?
It’s been more than four years since I was a caregiver for my late husband, Jeff, who died of ALS in May 2020. Caring for Jeff is the hardest and scariest thing I’ve…
How to keep ALS Awareness Month going all year long
As ALS Awareness Month comes to a close, it’s a good time to reflect on what we’ve accomplished, and perhaps more importantly, to find ways to both sustain and build upon our momentum…
Why I share with others the details of my late husband’s life with ALS
Like many others, I completed the Ice Bucket Challenge when it became a cultural phenomenon in 2014. Created by Anthony Senerchia, Pat Quinn, and Pete Frates, who were living…
How being outdoors brought peace and perspective, then and now
When I look back at photos from when my late husband, Jeff, was living with ALS — something I do often to find inspiration for this column — I’m struck by how…
The long search to find an accessible home while living with ALS
When my late husband, Jeff, was diagnosed with ALS, we were living in a small rented farmhouse that we both adored. Jeff loved the sprawling lawn that led to a tidal fishing pond…
Why talking about caregiving is hard — but so important
Even before my late husband, Jeff, was diagnosed with ALS in 2018, we approached his unusual and alarming symptoms as a team. He’d shared with me from the beginning his painless but…
Lou Gehrig’s legacy lives on through ALS college scholarships
I’ve written before about how my late husband, Jeff, drew inspiration from Lou Gehrig, even before his ALS diagnosis in 2018. Today, I’m sharing how I now do the same…
How winter weather brings stress when living with ALS
I have always been a summer person, relishing how everything in nature quietly comes to life — lush, green grass, abundant wildlife, and densely leafy trees. To me, summer evokes peace, calm, and lazier…
How I learn to live from those we’ve lost to ALS
In the wake of ALS loss, certain touchstones bring comfort every time I think of them. This includes small things like funny photographs, private nicknames, and sentimental gifts. In grief, even a favorite…
