Seeing Death Clearly Life with Lewy Body Dementia with Tonya Hersha
In this episode, the guest shares her journey of living with Lewy body dementia, exploring how grief, acceptance, and conscious planning shape her approach to life and death. She reflects on the challenges of diagnosis, the impact on her independence, and the ways she finds healing while preparing her legacy for her family.
Growing up in Texas, she experienced loss early when her mother passed away right after high school, which eventually led her to move across the country before settling in Indiana. With a background in mental health and years as an EMT, she recognized the early signs of her condition and understood what the future might hold. For her, grief was not about having the disease but mourning the life she had imagined for herself, including the cultural and familial roles she hoped to embrace.
Her symptoms began subtly, with coordination and balance issues that affected walking, stairs, and driving. Initial medical visits were dismissive, attributing her symptoms to menopause or depression, until she finally found a neurologist who listened. Physical and occupational therapy helped her maintain mobility at home, while support from a Facebook community of women facing similar diagnoses provided vital emotional connection and guidance.
Therapy played a critical role in helping her re-accept her diagnosis as symptoms changed her daily life, from losing the ability to drive to needing a shower chair. Her past experiences with loss informed her approach to end-of-life planning: she has prepared documents and arrangements to reduce stress for her family. She even planned a joyful, personalized living funeral. Through this, she embraces death with humor, love, and intentionality, seeking to create healing, connection, and a lasting legacy while living consciously to the fullest.
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