Background: The American Psychological Association defines resilience as the process of successfully adapting to challenging life experiences, through mental, emotional, and behavioral flexibility. Living with a progressive neuromuscular disease comes with significant medical burden, but may also present an opportunity for learning and adaptability that may be under-recognized.
Objective: This pilot study aims to analyze ways to document the positive attributes patients gain while navigating medical complexity.
Results: The Turbocharged Living Scale was created by Drs. Jim and Peggy Plews-Ogan after finding that while certain capabilities may be lost with ALS disease progression, new skills such as hope, adaptability, and resilience may be gained. This pilot study adapted this scale into three versions for different respondent groups: 1) Adults/ Adolescents and 2) Youth/ Children living with neuromuscular diseases, and 3) Caregivers. Post-survey questions were implemented to evaluate patient perceptions of the scale. The scale was distributed in the pediatric and adult MDA clinics at UVA and results were analyzed for 44 respondents. 36% reported they were never asked about their personal strengths prior to this survey and 58% wished there was a way to document the skills they have gained. The scales found a variety of responses about resiliency, hope, and adaptive skills, which were helpful for conversations. Patients reported gaining insight into their own journeys through the scale.
Conclusion: A significant number of respondents with neuromuscular disease reported that they do not have conversations with their health care providers about their strengths, new adaptive skills, or other resiliency factors throughout their disease course. This new scale allowed for conversation around these new skills and discussion about perspective that may come with living with a progressive neurological condition.