Darin Nakakihara, who gained widespread attention for openly sharing his experience with amyotrophic lateral sclerosis (ALS) on social media, has posted a heartfelt final message on Instagram.
In his farewell post, Nakakihara reflected on his life, the people he loved, and the supportive community that followed his journey.
“Well friends… I suppose this is my final sign-off,” he wrote to his 148,000 followers. “What a beautiful life it has been.”
Nakakihara began chronicling his life with ALS after receiving his diagnosis on November 9, 2023, following early symptoms affecting his left foot.
In a July 2025 interview with Today, he explained that he initially turned to the internet for advice. While support groups were available, he noticed that few people were sharing the everyday realities of living with ALS, including how quickly it can impact both physical mobility and mental well-being.
As his condition worsened, he chose to share his own story online. What started as a personal record soon grew into a meaningful source of encouragement and understanding for others affected by ALS, as well as their families.
In his final message, Nakakihara expressed profound appreciation for that community.
“If you’re reading this, know I left this world deeply loved, and deeply grateful,” he wrote. “For every prayer, every message, every laugh shared, every person who walked alongside me through this journey — thank you. You carried me more than you know.”
He also honored his wife, who supported him throughout his illness.
“To my incredible wife, my caregiver, my rock — you gave me everything,” he wrote. “Your love held me through it all.”
Even as ALS — a progressive neurological disease that causes worsening muscle weakness over time — took a toll on his body, Nakakihara emphasized that it never defined who he was.
“This disease took a lot, but it never took my spirit,” he wrote. “I fought hard. I loved deeply. And I leave at peace.”
He also recognized the broader community that formed around his story, saying it grew into something far greater than social media.
“And to my family, my friends, and this little community that became so much bigger than social media… thank you for making this life rich with meaning and joy,” he wrote.
Nakakihara concluded his message by asking others to continue supporting his loved ones, especially his wife and daughters.
“Please keep loving on my family, especially my sweet wife and girls, as they learn this next chapter without me,” he wrote.
“Don’t spend too much time being sad for me,” he added. “Go take the trip. Call the friend. Watch the sunset. Hug your people a little longer.”
“Go find some joy.”