What is it about?
ALS is a devastating disease that’s hard to diagnose and even harder to live with. Most people diagnosed with ALS are in their 60s or 70s. The disease has a life expectancy of just 2-5 years after diagnosis. The journey to a diagnosis can feel long and uncertain, with small, subtle signs showing up first and patients often trying to figure it out on their own. Once diagnosed, it’s usually not a complete surprise, as it’s something they’ve been discussing with their doctors over time. This study explores the experiences of people living with ALS during the diagnosis process.
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Why is it important?
This study enaged people with ALS and their caregivers to understand what the diagnosis and disclosure process feels like. Many said they didn’t get enough clear information about what to expect or what to do next after the diagnosis. These findings highlight the need for better, more personalized care and communication to support people during this difficult time.
Perspectives
This research was inspired by the primary author's dad, who was diagnosed with ALS in 2016. He fought hard to maintain his strength, and often asked: "does it have to be this hard?". By 2018, Dr. Stolee's research group had taken on this project of heart, and interviews were being conducted with others that had the same diagnosis, curious to learn more about the aging process and how people cope with this terrible disease. Dad passed away in 2020. So, unfortunately, he's not around to see the paper published. But, we hope that this addition to the growing body of literature on this topic offers some answers to his question, and that the experiences shared help to make life easier for those living with ALS. Grateful that the article has found it's home with PLOS ONE.
Kathleen Foldvari
University of Waterloo
Read the Original
This page is a summary of: “…but I know something’s not right here”: Exploring the diagnosis and disclosure experiences of persons living with ALS, PLoS ONE, December 2024, PLOS,
DOI: 10.1371/journal.pone.0301249.
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