Living with ALS changed my priorities in life, permanently
Sometime in my mid-40s, I wrote a list of goals I wanted to achieve before turning 50. I no longer have the list, but I remember a few things on it: Learn a second…
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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Why sharing is important amid the sadness of May
I remember the emptiness I felt the first September after graduating from college. I’d been a student for 16 of my 21 years at that time, and the void of not going back to…
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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…
Adding love and light to my home after experiencing ALS loss
When I was growing up, many of my neighbors participated in the U.S. Naval Academy Sponsor Program, as we lived just a few miles from the school’s campus in Annapolis, Maryland. Under the program,…
A snapshot in time prompts a flood of emotions and reflection
A photo I came across this week from when my late husband, Jeff, was living with ALS flooded me with emotions. It was taken in November 2019, the month we moved into an…
The end of a career was a hard loss for my late husband
I was enchanted on the first date with my late husband, Jeff, when our conversation turned to work. It’s an odd thing to say, because we can be conditioned to believe that work should…
Choosing how to communicate about ALS — and when
The summer and autumn of 2018 brought uncertain and scary moments for my late husband, Jeff, and me as he battled progressing symptoms of what would later be diagnosed as ALS. His symptoms…
Honoring holiday traditions during and after life with ALS
One of the things I cherished most about my late husband, Jeff, was his love of the holidays. From the year we began dating until our last Christmas, before he died from ALS…
Caregiving for my late husband often left me feeling helpless
I remember the first time my late husband, Jeff, fell as a result of ALS. Falls can be common with the disease, but I was still shocked each time one happened. When Jeff…
Recognizing the signs of angels who walk among us
A few weeks after my late husband, Jeff, was diagnosed with ALS in 2018, we were sitting in our primary care doctor’s office to talk. We’d just received a second opinion confirming the…
ALS and the heavy burden of grief
It was six years ago last week that my late husband, Jeff, and I sat in a neurologist’s office in Maryland as the doctor said, “I believe that this is ALS.” Moments before,…
A new ALS app called Roon shares wisdom from experts and patients
When I reflect on my time as a caregiver to my late husband, Jeff, while we lived with his ALS, I remember how afraid I often felt. I was fearful of injuring him…
