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# Chapter 14: John's Quiet Battle: Living with PSP

The torch had been passed, the flame tended by Florence now flickering brightly in the hands of the next generation. They would carry on her legacy of kindness, compassion, and unwavering devotion to family, ensuring that her spirit would continue to shine for generations to come. But the torch, heavy with the weight of history and the responsibility of the future, was not always easy to bear.

John Humpherys, another son of Dean and Neva, now stepped into the light. His story, unlike the adventurous tales of Robert or the musical serenade of Sally, was one of quiet strength in the face of relentless adversity. Diagnosed with progressive supranuclear palsy (PSP), a rare and debilitating brain disorder, John faced a daily battle against a body that was slowly betraying him. Yet, his spirit remained unbroken, his love for his family unwavering, and his determination to live life to the fullest a testament to the enduring power of the human will.

The 20th century, as it lurched towards its close, had been a century of unprecedented progress and unimaginable horrors. The world had witnessed the rise and fall of empires, the triumph of science and technology, and the devastating consequences of war and intolerance. The Cold War, which had cast a long shadow over the Humpherys family's early years, had finally come to an end, ushering in an era of globalization and interconnectedness. Yet, even amidst these momentous changes, the personal struggles of individuals like John Humpherys often went unnoticed, their stories overshadowed by the grand narratives of history.

John's early life, like that of his siblings, had been shaped by the values of Etna, Wyoming: hard work, self-reliance, and a deep connection to the land. He had learned to ride horses, fix fences, and tend to the garden, skills that instilled in him a sense of competence and a respect for the natural world. He had also inherited his parents' unwavering faith, a source of strength and solace that would sustain him through the trials to come.

The family newsletters, those annual chronicles of the Humpherys clan, offer glimpses into John's life before the onset of PSP. He was known for his quiet demeanor, his dry wit, and his love for his family. He had married Jan, a woman of warmth and compassion, and together they had raised three children: Curt, Chelsea, and Micky Ann. They had built a life filled with love, laughter, and shared experiences, creating memories that would sustain them through the challenges ahead.

In 1986, the Humpherys family reunion was held in Billings, a celebration of Jan, Curt, and Chelsea’s baptisms. John, always a man of faith, would have felt a deep sense of joy in witnessing his family embrace the gospel, strengthening the bonds that tied them together.

As the years passed, John's health began to decline. The symptoms of PSP, initially subtle, gradually became more pronounced. He experienced difficulty with balance, coordination, and speech. His movements became slow and deliberate, his once steady gait now marked by a shuffling stride. The diagnosis, when it finally came in December of 2020, was devastating. Progressive supranuclear palsy, a rare and incurable brain disorder, would gradually rob him of his physical abilities, leaving him trapped within a body that no longer obeyed his commands.

Jan, a pillar of strength and unwavering devotion, became John's primary caregiver. She learned to navigate the complexities of his condition, administering medications, assisting with daily tasks, and providing emotional support. She became his voice when he could no longer speak clearly, his hands when he could no longer grasp, and his legs when he could no longer walk.

The family newsletters, once filled with stories of travel and adventure, now reflected the challenges of living with a debilitating illness. In 2021, Jan wrote with characteristic honesty about John's condition, sharing the difficulties they faced and the strategies they had developed to cope. She spoke of the importance of therapy, which helped John maintain his mobility and speech for as long as possible. She also expressed her gratitude for the support of their family and friends, whose love and encouragement sustained them through the darkest days.

"John is doing okay," Jan wrote. "For those that don’t know, John was diagnosed with progressive supranucleur palsy in December of 2020. It is an aggressive form of Parkinson’s. He’s been doing therapy since his diagnosis, which helps keep him active. My health is fine."

Despite the challenges, John and Jan remained determined to live life to the fullest. They continued to travel, visiting family and exploring new places. They found joy in simple pleasures: a walk in the park, a visit from their grandchildren, a shared meal with friends. They refused to let PSP define them, choosing instead to focus on the blessings they still enjoyed.

The 2015 newsletter, edited by Melanie, contained a touching anecdote that revealed John's enduring spirit. During a family gathering, John, despite his difficulty with speech, insisted on telling a joke. He struggled to get the words out, his voice faltering and his movements labored. But with Jan's gentle encouragement and the patient support of his family, he persevered, finally delivering the punchline with a mischievous grin. The room erupted in laughter, a testament to John's ability to find humor even in the face of adversity.

Chelsea, John's daughter, also shared her perspective on her father's illness, highlighting his strength and resilience. She wrote of the importance of cherishing every moment, of appreciating the simple things in life, and of finding joy in the midst of sorrow. She also expressed her gratitude for her mother's unwavering devotion to her father, a love that served as an inspiration to them all.

"His voice has always reminded me of my Dad so it was emotional and I’m so thankful I went," Chelsea wrote.

In 2021, Jan wrote of the decision to get a puppy, a miniature schnauzer named Kobe. "John and I decided it was too quiet around here (ha!) so we decided that we needed a puppy," she explained. "We have been taking him to dog training. So far, we are the only ones being trained! He’s pretty stubborn, but we sure do love the little guy. He’s a lot of fun." The addition of Kobe brought a new sense of joy and companionship to their home, a reminder that even in the midst of hardship, there was always room for love and laughter.

As the years passed, John's condition continued to worsen, but his spirit remained unbroken. He found strength in his faith, in his family, and in the simple pleasures of life. He was a gentle giant, a man who had faced adversity with courage and grace, a testament to the enduring power of the human spirit.

In 2015, Jan shared a glimpse into their daily life, describing the challenges they faced and the strategies they had developed to cope. She spoke of the importance of routine, of maintaining a positive attitude, and of finding joy in the small moments. She also expressed her gratitude for the support of their family and friends, whose love and encouragement sustained them through the darkest days.

"It's not easy," Jan wrote. "But we take it one day at a time. We have good days and bad days, but we always try to focus on the good. We are so grateful for our family and friends, who have been so supportive. We couldn't do it without them."

John's story, though marked by hardship and loss, was also a story of love, resilience, and unwavering faith. He was a gentle giant, a man who had faced adversity with courage and grace, a testament to the enduring power of the human spirit. And as the torch passed to the next generation, his legacy of love and compassion would continue to guide and inspire those who followed. The newsletters, a testament to their shared heritage, would serve as a reminder of the importance of cherishing every moment and finding strength in the bonds of family.

In 2021, Chelsea shared a picture of her father as a baby, a poignant reminder of the vibrant life that had been slowly fading away. The image, a snapshot of innocence and potential, served as a powerful symbol of the human spirit's ability to endure, to find joy in the midst of sorrow, and to leave a lasting legacy of love and compassion.

As the sun set over the mountains of Etna, Wyoming, the echoes of John's laughter, the whispers of his stories, and the warmth of his love lingered in the air. He was engaged in a quiet battle, but his spirit remained unbroken, a beacon of hope and inspiration for the Humpherys family, a reminder that even in the face of adversity, the bonds of family could never be broken.

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