Man Who Shared His ALS Journey Online Leaves Final Message: ‘What a Beautiful Life It Has Been’
Man Who Shared His ALS Journey Online Leaves Final Message: ‘What a Beautiful Life It Has Been’
Staff AuthorThu, April 23, 2026 at 8:33 PM UTC
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Darin Nakakihara smiling at the cameraCredit: Darin Nakakihara/Instagram
Key Takeaways
Darin Nakakihara documented his amyotrophic lateral sclerosis, or ALS journey online after his 2023 diagnosis, gaining 148,000 followers
He used his platform to support others with ALS and their loved ones, sharing the realities of the disease
In his final message, he expressed gratitude for his community and paid tribute to his wife and daughters
Darin Nakakihara, who went viral for sharing his life with amyotrophic lateral sclerosis, or ALS, on social media, has posted a final farewell message to his Instagram account.
In the post, Nakakihara reflected on his life, his loved ones and the 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 documenting his experience living with ALS after being diagnosed on Nov. 9, 2023, when he first noticed problems with his left foot.
In a July 2025 interview with Today, he said he initially searched online for guidance. While support groups existed, he noticed a gap: few people were sharing the day-to-day realities of ALS, including how quickly it can change mobility and mental state.
As his condition progressed, he told the outlet he decided to document his own journey — which soon became more than a personal diary, evolving into a source of support for others navigating ALS and for loved ones trying to understand it.
In his final message, Nakakihara expressed deep gratitude 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 paid tribute to his wife, who had been by his side throughout his illness.
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“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 neurodegenerative disease that according to the Cleveland Clinic leads to muscle weakness that gets worse over time — took a physical toll, Nakakihara emphasized that it never defined him.
“This disease took a lot, but it never took my spirit,” he wrote. “I fought hard. I loved hard. And I leave at peace.”
He also acknowledged the broader community that grew around his story — one he said extended far beyond 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 closed his message with a request for continued support for his loved ones, including 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 continued. “Go take the trip. Call the friend. Watch the sunset. Hug your people a little longer.”
“Go find some joy. 🤍”
on People
Source: “AOL Entertainment”
