In the summer of 2020, Junichi Kakutani began noticing that his knees felt “wobbly” while he was walking. Despite having since been diagnosed with spinocerebellar ataxia, the father and husband plans to walk the Honolulu Marathon later this year and climb Mt. Fuji next summer.
According to the National Ataxia Foundation Website, ataxia is “a rare neurological disease. It is progressive — affecting a person’s ability to walk, talk and use fine motor skills.”
One day, Kakutani, who is the librarian at Harvey Green Elementary School in Fremont, Calif., felt his knees were “wobbly” while walking to school. In April 2021, he told his doctor his father had spinocerebellar ataxia. The doctor did some hand-eye coordination tests, leading them to “believe … (he) had the same disease.”
In May 2021, the doctors conducted a magnetic resonance imaging (MRI) scan, which revealed that Kakutani’s cerebellum was “shrinking.”
The Cleveland Clinic states that the cerebellum is the “part of your brain that helps coordinate and regulate a wide range of functions and processes in both your brain and body.”
When Kakutani heard the diagnosis, he was “both disappointed and relieved.” He was disappointed because he thought he would start experiencing the symptoms when he was much older, but he was also relieved that it “wasn’t something more life threatening.” Furthermore, he tries not to worry about what he can’t control.
According to the foundation, “complications from the disease are serious and oftentimes debilitating. Some types of Ataxia can lead to an early death.”
Kakutani acknowledged that his condition has worsened.
“By this time, my walking got worse and I started using a cane. In December 2021, a DNA test confirmed that I had SCA type 6 (SCA6),” Kakutani wrote in an e-mail interview with the Nichi Bei News.
Spinocerebellar Ataxia 6 is “a rare neuromuscular disease … caused by a genetic mutation that is passed on from parents to their children,” the NAF Website states. Kakutani’s son, Nate, has a 50 percent chance of also getting the disease.
As Kakutani, who will turn 50 next year, learned that SCA patients in their 60s will need to use a wheelchair, he decided that he wanted to visit places while he can still walk. He plans to walk the Honolulu Marathon — in 18 hours, with a cane — this December. He also plans to climb Mt. Fuji next July with a guide.
Before climbing Mt. Fuji, Kakutani plans to walk the Mission Peak Regional Preserve hiking trail, which is east of Fremont, Calif. Kakutani rows for about 45 minutes per day, six days a week. He also walks to work and practices kendo once a week.
Kakutani said it takes more time to complete daily tasks. He has “good moments” and “bad moments.” One moment, he will be “walking fairly well” and the next, “my legs forget how to walk.” He said stepping on and off a curb is a “hassle.”
Shelving books also takes time, but his student helpers assist him with this. He added that reading a book to students is “sometimes tough” and writing and typing are becoming more challenging.
Despite the disease, Kakutani tries to remain positive for his son. He wants Nate to “remember how I live with SCA and how I deal with struggles/inconveniences in case he has it, too.” He is raising money for the NAF “to make sure there will be a cure in case he has it.”
To donate to Kakutani’s online fundraiser, visit: https://t.ly/6BSRm. To learn more about spinocerebellar ataxia, visit: https://www.ataxia.org/.
Nichi Bei News staff writer Derek Tahara is a Yonsei or fourth-generation Japanese American born and raised in Sunnyvale, Calif. He earned his B.S. in Journalism at the University of Oregon. He is a lifelong fan of the Golden State Warriors and San Francisco Giants.