When ALS Leads to Dysarthria, a Loved One Offers a Gift
For my late husband, Jeff, and me, the most difficult and saddening aspect of his ALS progression was the loss of his voice. It was heartbreaking for both of us when he…
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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Sharing fears with other ALS caregivers can help us feel less alone
The weeks immediately following my late husband’s ALS diagnosis were the scariest and most unsettling of my life. Even with Jeff’s physical symptoms pointing toward ALS, nothing could’ve prepared us to actually hear…
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The Gift of Presence Brought Meaning and Love to Life With ALS
I remember the times before ALS, when after a day away from the house at work or running errands, I’d drive home in anticipation of seeing my late husband Jeff’s blue pickup truck…
How I Learned to Listen to Unspoken Words as We Lived With ALS
My late husband, Jeff, had a motorized scooter that gave us the freedom to move and travel as his ALS progressed during the summer of 2019, our first full summer living with…
Finding Support and Community When Living With ALS
When my late husband, Jeff, was diagnosed with ALS in October 2018, I remember the early, seemingly insurmountable feelings of fear and bewilderment. I remember understanding that we were out of our depth…
Remembering Helps Me Be More ‘OK’ on Tough Days
I’m writing this column on a tough and emotional day — the anniversary of the 2018 ALS diagnosis for my late husband, Jeff. For the day I might have planned, I’d be hiking…
How Love Conquered Fear After My Husband’s ALS Diagnosis
ALS is notoriously relentless on the human body. But it can be equally brutal on our emotions, and for my late husband and me, this was especially true when he was diagnosed. When…
How a Clinical Trial Brought Meaning and Hope to Our ALS Fight
After my husband, Jeff, died from ALS in 2020, I found a video he’d taken by mistake right around the time of his diagnosis. He’d left his phone on and unintentionally recorded…
How ALS Weakness Made My Husband Stronger
If you asked my late husband, Jeff, what he’d lost while living with ALS, he might have told you via text-to-speech technology that he missed his voice. His dry wit, irreverence, and…
