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 fell, it laid bare how ill qualified I felt to care for him, even while taking…
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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In 2021, I participated in a Zoom meeting about ALS community engagement. My husband, Jeff, had passed away from the disease a year earlier, but I have remained involved in advocacy. It was during the meeting that I met a compelling young woman named Leah Stavenhagen. Then in her late…
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 diagnosis, and we were reeling. I remember how brutal the appointment felt for all three of us.
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, I’d been watching the doctor administer a second electromyography (EMG) on Jeff, who found the procedure…
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 during a transfer. I dreaded making a mistake with his feeding tube. I worried about his…
I remember borrowing a coffee tumbler emblazoned with a Royal Caribbean cruise ship logo from my late husband, Jeff, while we were dating. I wanted to take my coffee home from a visit to his house, and he reluctantly handed it over, explaining that he and his brother Steve had…
When I met my late husband, Jeff, we lived exactly 7 miles apart by car, our respective homes separated by the Potomac River just south of Washington, D.C. The bridge that crossed it nearest to our places featured a wide and safe bike lane that separated cyclists and pedestrians from…
I’m writing this column while gazing out over a foggy Pacific Ocean, aboard a ship that’s taking a group of us from Vancouver, British Columbia, Canada, to the icy waters of Glacier Bay, Alaska, and back. Intermittently on this voyage, pods of porpoises come racing close by the ship, and…
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 testing appointments as we went from electromyography to blood work, swallow study to spinal tap. Our…
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 following the officer, dreading the bad news that I was sure he was headed to my…
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 a central part of his life. They’d grown up together in a home in Wyandotte, Michigan,…
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 ever done, a fact that took me years to acknowledge out loud because I believed that…
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 as we search and fight for cures. For the past month, members of the ALS…
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