Each May during ALS Awareness Month, we come together to shine a light on people living with ALS. People like Jim, who, with his wife Peggy, recently participated in our ALS Roundtable Program where he offered some interesting perspectives on his ALS journey that we wanted to share with you.
You can sum up the kind of pediatrician Jim Plews-Ogan was with two words: house calls. During his more than 20 years of practice for adolescents and children in Charlottesville, Virginia, Jim still made house calls when needed as part of the personalized care he offered. Not surprisingly, folks like that end up having deep ties to the community they serve. Even a quick trip to the grocery store for Jim and his wife Peggy often means multiple stops to chat with parents of patients and former patients.
Jim also shared his wisdom and knowledge with the next generation of physicians as an Associate Professor and now Emeritus Associate Professor of Pediatrics at the University of Virginia. Life was busy, but it was full of purpose and meaning.
But on December 2, 2021, “our lives cracked open,” Jim and Peggy shared on their blog. Jim was diagnosed with ALS. His symptoms had begun with weakness in his left hand, with the lefty noticing writing and even giving shots to his patients was becoming more difficult. From there the neurology team at the University of Virigina eliminated other possible causes until they ended up with the diagnosis no one wants to hear: ALS.
“At the time of the diagnosis, we were both busy clinician-scholars,” they wrote. “Our lives were full and engaging, with meaningful work, close family, and a community of friends. We were runners, and loved camping, hiking, and exploring the world. We were activists, focusing on improving the care of vulnerable populations. With this diagnosis, our lives were completely upended.”
After processing his diagnosis with family, friends and colleagues, Jim resolved that he needed to still live a life with purpose and meaning, even if what those words meant needed to be reevaluated.
“For many years, the scientific community focused only on the negative effects of trauma,” Jim and Peggy wrote. “Post-traumatic stress disorder became a household term. Only more recently have we discovered that positive transformation can and does occur in the wake of severe life-changing events.”
Jim and his family had a sort of roadmap for finding and embracing a new purpose after his ALS diagnosis. Years before, Peggy had been a co-author of a paper on medical professionals who had made serious errors that caused harm to a patient. The research found that physicians who coped positively with having made a serious mistake described five elements that helped them do so: acceptance, stepping in, integration, new narrative, and wisdom.
“Purpose was a central theme that ran through each of these elements,” they wrote about the study. “Transformative growth and wisdom-gained through adversity necessarily involved the struggle to reshape a new understanding of themselves, the world, and their place in it, redefining their purpose in order to continue to lead a meaningful life.”
So, Jim contemplated how he could apply these same principles to his life. He came up with a scale to measure and document progressive growth. He calls his scale the ALS-TLS, TLS standing for “Turbocharged Living Scale.”
The ALS-TLS is meant to mirror the ALS Functional Rating Scale – Revised (ALS-FRS-R), but instead of measuring decline in function, “The ‘TLS’ is an attempt to begin a conversation and stimulate curiosity about post-traumatic growth using 12 aspects of daily life that shine within the ALS community.”
While the 12 aspects of daily life included in his Turbocharged Living Scale represent Jim’s ideas of how a person living with ALS can live an intentional life and be open to change, in creating the scale he drew from not only on his experiences, but what he has seen from others within the ALS community. “Life with ALS is a challenge. The ALS-TLS reflects the human spirit we have witnessed in others living with ALS,” Jim said.
On his blog, Jim recently wrote at length about one of these aspects of daily life—Adaptability—noting the daily challenges with mundane tasks like dressing and eating, and how even these are an opportunity to step-in to the decision to move forward with living. “A profound opportunity to build hope is lost unless someone is curious and takes the time to listen to the stories about how we go on living, moving forward, and making progress,” he wrote.
Jim hopes to write on all 12 aspects from the ALS-TLS on his blog in the future.
Thank you, Jim and Peggy, for sharing your journey with us. As ALS Awareness Month continues, we honor all of those who, like Jim, find ways to face the challenges of ALS with courage, resilience, and hope. Photos courtesy of Hummingbird Fund.
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