ALS broke my independent streak and taught me how to ask for help

After my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I could not have managed without the help of other people, and he couldn’t have either.

This is hard to write, but even harder to own. Asking for help used to be difficult for me. In a performance review, a supervisor once gently said to me, “Seek help when you need it. People want to help others. It feels good.”

At first, that advice didn’t make sense. People were busy and had their own responsibilities. Asking for help felt like an imposition, an admission that I was struggling to handle things or was incapable of doing so. While I did work to accept my boss’ advice, I continued to soldier on independently whenever I could; I still struggled with feeling like I was putting someone out.

My independent streak ended abruptly on the day Jeff was diagnosed with ALS via second opinion in a windowless exam room in Baltimore. I’d been hoping that some as-yet-unknown reason was causing his foot drop and slurred speech, but when his diagnosis was confirmed, my heart dropped into my stomach, my breathing became ragged, and I felt immediate panic. I knew that day that Jeff and I — two people who were bad at accepting help — were going to need heaps of it.

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 Both of us needed help, but differently

Jeff had been a federal law enforcement agent for nearly 30 years. He was used to taking care of everyone, and he was good at it. In the face of an ALS diagnosis, though, we were both outmaneuvered. I knew instinctively that neither he nor I could do this alone, and I suspect he knew it too.

What I didn’t anticipate, though, was how different the help we each needed would be, and where we would find our sources of strength and assistance. As patient and caregiver, and as spouses, our needs were different. While we’d agreed to approach ALS as a team, seeking help was one area where our needs diverged. I craved information and reassurance. I wanted to know what we could expect as Jeff’s ALS progressed, and how I could best take care of him. Jeff needed normalcy and humor. He wanted to know that his friends would still treat him the same (they did) and that he could still find comfort through laughter (he did).

I found great comfort in the ALS community, at first total strangers who later became like family. I reached out — via phone, email, and social media — to anyone who would answer. Over time, I made connections and joined more formal networks of people in the ALS community, those who loved someone, had lost someone, or were treating or caring for someone. I found these groups through organizations like I AM ALS and Live Like Lou. As I learned more, I participated more, and over time, I became someone who could offer help instead of just accepting it.

From helped to helper

Jeff, for reasons I understood and respected, was uncomfortable engaging with the ALS community and avoided it. While he appreciated going to the ALS clinic because he adored his care team, seeing other people who were living with ALS was hard for him. He was uneasy seeing other patients’ progression, particularly as his own was faster than normal.

Jeff’s help came instead through his lifelong and enduring friendships — from his career, his childhood, and his family. I am convinced that the greatest help Jeff received, beyond caregiving, was having a sense of normalcy.

Jeff’s life with ALS taught me many lessons, most of which I learned the hard way and would still rather not know. One of the most valuable, though, was how to ask for and graciously receive help, even the kind I will never be able to repay. Becoming a more vulnerable person actually made me braver and eventually enabled me to give others the kind of help I remember needing the most.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.