Spotlight On: Juri Kameda,
Reflections on Motherhood and ALS
The word “mother” can be used as both a noun and a verb, and there is no better example of both in action than Juri Kameda.
A true renaissance woman, Juri has worked as a software developer and a language interpreter, consulted for international businesses, volunteered as a cub scout leader, taught music for multiple instruments, built and repaired violins and cellos. She is also an accomplished free diver for abalone, a world traveler, and even a jewelry maker. But, her most important work that she is most passionate about, is being a mother.
Born and raised in Tokyo, Japan, Juri always showed a propensity to serve and help others. "I took buses and trains all over Tokyo on my weekends to volunteer at an orphanage, senior homes, and for children with physical and mental challenges," Juri said.
She came to the United States in 1981 as a foreign student at University of California, San Diego, where she studied Cognitive Science (with emphasis on computer science) as a major, and Chinese language and music performance as a minor. After graduating, she returned to Japan to complete her bilingual education at an evening vocational school, training to become a simultaneous interpreter.
She returned to the United States and met Ken Kameda on a blind date in 1989. They dated each other while going to Kendo practices (Japanese style fencing). They were married in May of 1990, and their son Hideyo was born in 1991. They then welcomed another son, Koji, in 1993.
Juri had a fulfilling and demanding job as a software development consultant in Silicon Valley, but, it was a frightening life experience that changed her career path. "My younger son, Koji, was born apnic and 7 weeks premature, needing ventilator support for the first couple of weeks of his life," Juri shared.
"Soon after his birth, my older son Hideyo then developed severe asthma,” shed continued. “It was so bad sometimes he would turn blue! I would often have to dial 911 and would then be frequenting the ER. Eventually Koji developed asthma too.”
Juri came to realize that she had so much experience in managing her sons’ asthmatic episodes, she thought that it would be more rewarding to be able to help other people as a healthcare professional.
”Rather than sitting behind a computer screen and developing a piece of software, I decided that I wanted to provide services that would directly impact and improve the quality of people’s lives,” Juri said.
In 2002, at age 40, she decided to hit the books alongside her boys (then ages 8 and 10) and went back to school to become a Respiratory Therapist. In June of 2004, she successfully graduated from Foothill College Respiratory Therapy program with honors.
Then in 2006, Juri was diagnosed with ALS, when Hideyo was 14 and Koji was 12 years old. It was about the same time that their middle school math teacher was also diagnosed with the devastating disease.
“They were constantly asking me if I was going to be okay or not, because they were witnessing on a weekly basis a much faster progression with their math teacher,” Juri shares, “As a mother, I wanted to protect them from becoming overly concerned. I had to calm them down by telling them that, somehow I was different and I was doing everything I could to improve the odds of my survival.”
From the day one of her diagnosis, Juri had trouble breathing. Her neurologist at UCSF prescribed a BiPAP, a non-invasive breathing machine, to compensate for her weakening breathing muscles, especially at night while sleeping.
“This setup required me to wear a tightly fitted mask on my face which I hated so much,” remembered Juri. “One night, I became so annoyed, I threw it against the wall and started crying. My husband, Ken, was almost in tears, trying to help me make various adjustments to the mask, and begged me to sleep with it. “
“Then, our younger son, Koji, waltzes into our bedroom and says, ‘Mom, that thing is so cool! You sound just like Darth Vader!’ From that very moment, all the tensions that had been building up suddenly melted away with laughter, and I began the road of living with ALS and not dying from it.”
Juri and Ken did their best to keep their lives about more than ALS. Both boys were active in music - Hideyo plays violin and Koji plays cello - and Juri went to all of their concerts and recitals. They were also involved in sports and she went to as many of their games and tournaments in her wheelchair, to cheer them on as much as she could.
“I encouraged our boys to bring their friends over,” said Juri. “They all loved to come over because we had the biggest screen TV, and they would play video games, watch movies, or do poker night.”
When the boys had to fulfill community service hours, the family all went over to friends with ALS whom they had met at their Golden West Chapter support group, and the boys help around the house with cleaning. They would bring their instruments over and play duets as well. The family also participated in many ALS Association National ALS Advocacy Conferences as well as the Golden West Chapter’s Walk to Defeat ALS events to help raise awareness and support for the ALS community. Juri also shared her story in the Chapter's "I AM LOU" public awareness project in 2009.
Juri’s tenacity and strength as a mother is a driving force in her life, and she had done everything that she could to not let her diagnosis stand in her way. Once, when her younger son Koji was considering dropping all his classes in San Diego, Juri was resolute in coming to his aid and traveled to see him at school.
“Ken and I flew to San Diego and my wheelchair was checked into the plane,” Juri shared. “The cargo hold opening was so small that they had Ken go down onto the tarmac to recline the seat back all the way so that it would fit through the door. Once we arrive, we had to figure out how to get to the school. So we contacted UHaul and found out that my wheelchair could go up the truck ramp in the rear. We rented the smallest truck that had a pull-out ramp (it was a 14 ft truck), and were on our way together to help our son.”
“Koji will forever remember that his mom came to see him the next day after his troubled phone call. He probably didn't expect for his mom to literally show up in front of his dorm rolling off from an orange striped U-Haul truck in my 300 lb pink power wheelchair!”
“What he has learned from me is that where there’s a will, there’s a way,” said Juri.
After many years living with ALS, following an acute respiratory failure, Juri decided to have a tracheotomy with the use of 24/7 ventilator. “The disease had continued to ravage through my body,“Juri shared. “By then, I also had a feeding tube, since I could no longer chew food.”
“Now, I cannot move any parts of my body much at all. I use an Eye Gaze computer, which uses an eye tracking technology that allows me to type a post like this by looking at each of the letters and by blinking on a letter to select.” Juri also uses the eye-gaze device to continue exploring her love of my music by using the device to compose songs.
Thirteen years after her diagnosis, Juri has kept her promise to her sons. “It has definitely not been an easy road for my family, but my determination to be there for them as long as possible, became the key impetus for always being prepared for the next step of challenges of living with ALS,” Juri shared. “I have been able to provide my love and support to my boys, and, in return, they have learned from me to become self motivated individuals, who are passionate about their lives and career paths.”
“In hindsight, my journey with ALS had tremendous impact on them, but the boys have grown up to have a mutual love for me, respect for my disease, and who I am as a person. I’m one of the luckiest Moms in the world because of the perilous road that the boys and I have travelled together due to my illness”
Koji is now 25 and has since successfully graduated from UCSD and has a consulting job setting up and broadcasting computer game tournaments across the United States. Hideyo is 27 and in a graduate program in Architecture at UCLA.
Juri sometimes wonders what her relationship with her sons would have been like had she not been diagnosed with ALS.
“Ironically, I think that I would not have been as good of a mother as a healthy person.” Juri shares, “Before being struck by ALS, I worked at two jobs totaling 48 hours a week, as a respiratory therapist, and close to 60 hours a week as a software engineer before that. My disease then was that I was a workaholic. Perhaps it was a blessing in disguise that I got the ALS diagnosis, to be forced to be home and work on repairing my relationship with my boys, and then to be able to focus on nurturing a long-lasting relationship with them.”
“I love seeing my boys grow up, make positive contributions to the world, and be happy in their lives," she shares. "I named my older son Hideyo, meaning 'Excel in the world,' and my second son Koji, meaning 'To plant happiness' in Japanese."
"I always hoped that my boys would grow up to live up to their given names, and I am so pleased that I have been that I have been able to see that they have," shared Juri.
Juri received a delivery of a dozen tulips, a few days before Mother’s Day, but the package was lacking a sender’s name. “Which one of the boys do you think it's from?” she asked, with a twinkle in her eye. “I think I have the mother's instinct to which one had sent it to me.”
“One of the things that I love the most about my life is being a mom.”