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 had begun with the seemingly benign experience of foot drop, which was frustrating but not painful.

Things changed, though, when Jeff began slurring his words. It was almost imperceptible at first, and in fact, I didn’t notice it at all. Friends we’d gone to lunch with mentioned it to me afterward. I remember saying that I hadn’t noticed a change in his voice, but as more people observed the slurring, we paid attention.

Those months marked a change in our journey with what we’d soon learn was ALS, as it was the beginning of family, friends, and others understanding that something was wrong, and the advent of our need to communicate about it.

Deciding what and when to share, and with whom, about Jeff’s ALS progression was an important part of living with ALS.

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A learning process

In the early days of his illness, I couldn’t have imagined how complex living with ALS would be. It was a patchwork of technical facts and medical considerations interwoven with the most basic requirements of daily living, all made challenging by the disease. Added to that, Jeff, like most people living with ALS, retained his full cognitive function and robust personality; our approach to living with his ALS needed to be as emotionally thoughtful as it was physically safe.

Jeff Sarnacki and Juliet Taylor shared this photo when Jeff decided he was ready to publicly talk about his ALS diagnosis. It was candid, realistic, and unfiltered, but also conveyed their hope. (Courtesy of Juliet Taylor)

ALS, for us, was a process of learning as we went. Every new symptom and every trip to the clinic brought new information, new questions, and frankly, new fears. But those questions and fears weren’t unique to the two of us; people that loved Jeff wanted to know, too. We both realized that we needed to add an important, even sacred, task, which was determining what to share, with whom, and when.

Jeff and I agreed that communicating candidly about his diagnosis, symptoms, and progression was important. (If we hadn’t agreed, I would’ve deferred to him as the person living with the disease.) We both felt that some degree of transparency around his illness would be helpful in managing both our fears and those of our family and friends. Information can be power, even if it’s not the information we want to hear.

We also understood that some news was strictly private, and other news would be received differently depending on the person and their relationship to Jeff. For example, it was far more important to share difficult medical news with his closest family members far ahead of sharing it with others, with the understanding, particularly when the news wasn’t good, that it would take time to digest. Other information we shared freely and with joy, such as when Jeff was accepted into a clinical trial.

For as long as he could, Jeff communicated with his two adult children in person or via phone or text about his diagnosis and symptoms. I remember leaving our ALS clinic on the day his diagnosis was confirmed via a second opinion. Jeff texted his kids that we’d received the terrible news we’d been anticipating. But he also reminded them that, first and foremost, he would stay positive, live life in the best possible manner, and enjoy their time together. He approached his parents and siblings in the same way.

It took us more than three months to share freely that Jeff had been diagnosed with ALS. Because he had a large network of friends and colleagues around the world, we decided that social media would be the most efficient, effective, and importantly, accurate means to communicate about his diagnosis. We settled on an ongoing process of me drafting posts for his review, making any edits he wanted, and then Jeff sharing as he wished.

As his ALS progressed, we created a private Facebook group for family and close friends. Jeff deputized me to make regular posts. In these posts, we shared about his health and his progression, but also about the many wonderful moments we were experiencing as we traveled, hosted friends, and enjoyed daily life. Along the same lines, we were also honest when Jeff’s health was declining and we were experiencing scary times.

In retrospect, I’m satisfied with the way Jeff and I communicated during his journey with ALS. We were candid about both the good times and the hard times, and we described life as accurately and thoroughly as we could. Communication is such a personal choice with ALS, and there’s no right or wrong answer. For us, transparency was helpful, and for others, privacy is a more important consideration. Both approaches — and anything in between — are appropriate.

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.