Introduction to ALS
Darin Nakakihara doesn’t remember much from the day that changed his life. He left the doctor’s office and walked to his car. In the driver’s seat, he looked up the disease he was just diagnosed with, and all he can recall is seeing that the average life expectancy is two to five years.
On Nov. 9, 2023, after nearly a year and a half of questions, worsening symptoms and misdiagnoses, Nakakihara learned he has amyotrophic lateral sclerosis, or ALS.
He looked online for resources. There were support groups and he would eventually join an ALS clinic, but no one was documenting the day-to-day of the degenerative condition — the rapid changes in mobility and mentality — so he decided he’d be the one to do it.
On social media, the 57-year-old has gained a following recording how ALS progresses. Now, even though speech and mobility are challenging, he’s still going, detailing the ways he struggles to feed and dress himself, how he maintains his faith, and his advice to others with the disease.
In one viral post from May, Nakakihara shared side-by-side videos of himself, one from 2024 and another filmed a year later. In the 2025 video, his speech is changed, he’s in a wheelchair and he struggles with fatigue.
His promise to his viewers: “I will try to never, ever make you feel bad.” Most accounts of ALS are depressing and daunting, he said in another video. “I’m not saying I want it to be sugarcoated,” but he takes the lows of ALS as they come, he said.
The rest of the time, Nakakihara is trying to find joy. “I choose to live my life every day and live that life with joy and be thankful for the things I have and just be grateful for everything with that the Lord has blessed me with,” he said.
The First Signs
ALS is a neurodegenerative condition that impacts the way nerve cells communicate with muscles, per the Cleveland Clinic. It causes progressive muscle weakness that affects how a person moves, speaks and breathes. In 90% of cases, ALS occurs randomly; in 10%, it’s inherited genetically.
Nakakihara has no family history of ALS.
It all started with his left foot in 2022. “My left foot wouldn’t go high enough,” he tells TODAY.com.
He struggled to lift it over curbs, and as it dragged behind his right foot, he began tripping regularly. Nakakihara’s wife grew concerned and pressed him to see a doctor. The first neurologist told Nakakihara he was dehydrated. Immediately, Nakakihara and his wife pushed back. His wife advocated for more tests, which led to imaging that looked at Nakakihara’s head, upper spine and lumbar. A second neurologist determined he had cervical disc herniation for which he underwent surgery in June 2023.
But his symptoms didn’t improve, so Nakakihara saw a third neurologist in November 2023. By this time, he’d started experiencing weakness in his left arm, as well.
The neurologist performed a nerve test on his left arm, when he did the same thing on Nakakihara’s right arm, his face turned serious, Nakakihara recalls. The doctor said he suspected Nakakihara had ALS.
In the car, Nakakihara Googled the condition, and the rest is a blur. At home, “my wife was on a call,” he remembers. “I told her she needs to hang up right now,” and he shared the news with her and their three daughters.
Living With ALS
Nakakihara thinks back to life before ALS fondly. He describes trips with his family to Disneyland, drinking wine and going out to dinner with his wife. A high school teacher, he used to vlog on YouTube about his career before going on medical leave.
He remains committed to his faith but no longer plays guitar and bass for the church’s band. “That was a big part of my identity,” he says.
He has a large group of people who’ve helped him through his diagnosis and disease. “I have come to realize how important relationships are and I am so choosy about the people I will let be a part of my life and you should be, too,” Nakakihara said in a 2024 video. “I have a very limited amount of days left on this earth, and I don’t want to waste it on fake people.”
On a calendar in Nakakihara’s home, each day is marked with the name of a loved one scheduled to come a spend time with him for an hour. And even when ALS is weighing especially heavily on his mind, body or both, “they’ll just sit with me,” he says.
Nakakihara’s youngest daughter is recently engaged and planning her October wedding. (Courtesy Darin Nakakihara)
Nakakihara is rarely alone. He has two caregivers who look after him four times a week, his wife works from home, and his three daughters come to see him regularly. The youngest, recently engaged, is planning her wedding for October 2025 so Nakakihara can be there.
For some time, Nakakihara used on a cane, then a walker, and he’s now in a wheelchair most of the time. He can still speak, but his "hands are pretty much not working," so to text and make calls, he is able to connect his phone and computer, and operate them using a mouse and one finger on his right hand, which remains his strongest.
Every three months, he visits an ALS clinic, where specialists monitor the disease’s progress. He’s stopped taking medication because those that are currently available are "not even very good," he said in one video. "They don’t cure you and they don’t make you feel any better."
Two years after his diagnosis, Darin Nakakihara is nearly always in a wheelchair. (Courtesy Darin Nakakihara)
Looking Ahead
Documenting his experiences has proven to be the outlet Nakakihara needs. In his videos, he’s vulnerable and honest, expressing his disappointment in the disease, what it’s doing to him and in the lack of treatment options.
“This thing is 150 years old,” he says. “There’s no cure, there’s not even a treatment, and also there’s not even a test for it. They just rule out other things and it’s insane.” He longs for advancements in ALS research.
Until then, he’ll continue to “go find some joy,” a phrase that has become his enduring motto. “I just want people to know that we could be purposeful in our pursuit of joy, and even getting diagnosed with this hasn’t changed that.” He admits it takes effort to do so every day, but, he says, it’s worth it. “I woke up today and that’s good.”
Conclusion
Darin Nakakihara’s story is a testament to the importance of living life to the fullest, even in the face of adversity. His courage and resilience in the face of ALS are an inspiration to many, and his documentation of his experiences has helped raise awareness about the disease.
Nakakihara’s message of finding joy and living life with purpose is one that resonates with people from all walks of life. His story is a reminder that every day is a gift, and that we should strive to make the most of the time we have.
FAQs
Q: What is ALS?
A: ALS (Amyotrophic Lateral Sclerosis) is a neurodegenerative condition that affects the way nerve cells communicate with muscles, leading to progressive muscle weakness.
Q: How is ALS diagnosed?
A: ALS is diagnosed through a combination of medical tests, including nerve tests, imaging tests, and blood tests, as well as a thorough medical history and physical examination.
Q: Is there a cure for ALS?
A: Currently, there is no cure for ALS, but researchers are working to develop new treatments and therapies to slow the progression of the disease.
Q: How can I support someone with ALS?
A: Supporting someone with ALS can involve helping with daily tasks, providing emotional support, and advocating for their needs and rights.
Q: Where can I find more information about ALS?
A: There are many resources available online, including the ALS Association and the National Institute of Neurological Disorders and Stroke, that provide information and support for people with ALS and their families.
