Before her diagnosis of ALS, Juri Kameda was a hyperactive, multitasking, working mother of two. Today, seven years after receiving that life-changing news, she’s … well … still a hyperactive, multitasking wife and mom. Although she’s no longer employed, her full-time job now is to embrace her disease. Is ‘embrace’ really the word to use here? Absolutely, according to Kameda: “I’m not rejecting ALS; I’m embracing it,” she says. “I’m coexisting with my disease.”
Needless to say, Kameda, who lives in California’s Silicon Valley with her husband (their sons are both away at college), has a positive attitude when it comes to ALS. In fact, she considers herself lucky because her disease is progressing slowly. “I’m entering my eighth year of living with ALS. My approach to coping with it is to look for my abilities within my disability.”
Currently, Kameda uses a power chair full time during the day and a noninvasive ventilation system to aid her breathing. Though three fingers on each hand are fully functional, she cannot raise her hands from her lap without the use of a mobile arm support attached to each forearm. Kameda surrounds herself with a plethora of other assistive devices, as well.
“I’m always thinking of new ideas for overcoming my disabilities so I can have quality of life,” she says. Much of her time is focused on staying as independent as possible. For Kameda, independence equals quality of life. Her husband, Ken, works full time as a software engineer at Adobe Systems in San Jose. He helps out before heading to work each weekday morning, about when her part-time caregiver arrives. But from noon until early evening when Ken arrives back home, Kameda is happily on her own with a little help from her trusty sidekick, Galvin, a Lab/golden retriever service dog.
Being independent and multifaceted is nothing new to Kameda — that’s pretty much always been her style. Fluent in Japanese and English, with a conversational grasp of Mandarin and Spanish, she majored in cognitive science at University of California, San Diego, and minored in music. She began her working career as a software and typeface developer, and started her own business doing desktop publishing, translating and interpreting. In her spare time, she learned how to craft violins, which led to a job in a string instrument shop, repairing violins and cellos.
By this time she had become the mother of two boys, and when they both had severe respiratory problems, she decided at the age of 40 to reinvent herself as a respiratory therapist (RT). Upon completing her training, she worked as an RT at nearby Stanford Hospital in both the intensive care and emergency room units.
“I learned firsthand how RTs play an incredible role in helping people to breathe, which means giving life,” she says. “Of all the careers I’ve had, becoming an RT was the most gratifying. I didn’t realize it at the time, but I was also gaining lifesaving knowledge for myself.”
It was during this time that early symptoms of Kameda’s ALS began appearing — not being able to turn her car’s ignition key, for instance. Over the ensuing months, she noticed increasing fatigability, shortness of breath and reduced muscle strength. Finally, in January 2006, she received the diagnosis: It was indeed ALS. Needless to say, the Kameda family was devastated by the news; the first year after receiving the diagnosis was the hardest, not knowing how fast the disease would progress. However, the natural optimism and resilience of Juri Kameda rose to the occasion. She accepted her situation and decided to meet the reality full on. “This disease doesn’t own me,” she says. “I own the disease.”
Kameda uses whatever it takes to keep her independence. A perpetual and enthusiastic student, she learned about the many aids available to help her maintain an acceptable quality of life. Fortunately, her husband Ken is very supportive and an accomplished do-it-yourselfer. “He’s the rock of the family; and for me, an enabler. When I say I want to be able to do a certain thing, we’ll brainstorm together and figure out what we need to do.” For instance, he’s installed low-cost openers on doors and gates around their home, with remote-control switches attached conveniently on her wheelchair. When Juri needed her ventilator’s battery to last longer, Ken figured out how to tap into her power chair’s higher-capacity battery with the flip of a switch. Juri and Ken have teamed up to solve many quality-of-life problems: “We’re always very creative,” she says. “We oftentimes have to think outside the box.”
With a weak diaphragm, breathing is a major issue for Kameda, but so far she has avoided having a tracheostomy, using a Respironics Trilogy ventilator attached to her wheelchair to assist her breathing. However, she doesn’t like using the mask during the day; instead she has what she calls a “sip-and-puff” type mouthpiece — about the size of a drinking straw — mounted near her lips. As she feels the need for a breath of air, she just turns slightly, takes a sip and proceeds with what she’s doing.
Creative thinking has definitely come into play when Kameda is going about her day on her own. Starting from her hospital-type bed, she can transfer, using a Voyager overhead power lift, into her wheelchair, and slip on her JAECO exoskeleton arm-lifting aids, which allow her to move into the kitchen for a bite to eat. If she needs something from the fridge, her pal Galvin will open the door and even retrieve certain appropriately placed items for her. “And whatever I drop, Galvin can pick it up for me ... and I drop a lot,” she laughs. From the kitchen she can navigate to her computer and answer her email without typing, using Dragon NaturallySpeaking software, and her iPhone as a remote mic for her dictation.
When she has an appointment away from home, Kameda and Galvin travel through the automatic French doors activated from her power chair; then she locks the deadbolts to the house with a special app on her iPhone. (She uses another iPhone app to adjust her home’s temperature.) “I may be alone, but I’m fully equipped,” Kameda says with a smile.
Outside, Kameda’s chariot awaits: a converted 2004 Toyota minivan with a side-entry power ramp. The conventional driver’s seat has been removed so no transferring is necessary; she wheels right up to the specially equipped driving hand controls, including a Drive-Master “reduced effort” steering wheel and knob; locks herself in place and, with Galvin settled in, heads off for her appointment. “I’m a perpetual problem-solver,” she laughs. “I do all sorts of weird things to stay independent.”
In her ongoing campaign to maintain her quality of life, Kameda has worked hard to stay physically connected to her beloved music. The mobile arm supports allow her to continue to play the piano for limited periods of time. However, the devices don’t allow her to play the flute in the traditional horizontal position. So Ken found a craftsman who performed major surgery on the instrument; Juri now plays it vertically, like a clarinet.
So, what else does this power chair dynamo do in her spare time? Well, she jumps out of airplanes. About a year ago, she and Gloria Hale, who also has ALS, decided to scratch skydiving off their to-do lists. And they decided to raise money for ALS research, and awareness of ALS in the bargain. They were successful on all accounts. In tandem with experienced instructors, they jumped from two miles up, free-falling for 30 seconds before soaring and landing back on terra firma right near their wheelchairs. And with their successful PR campaign, they raised $20,000 and gained much-needed awareness of ALS. Juri had such a good time, she went back up a few months later and jumped from a higher altitude!
What’s next for Juri Kameda? “I’m getting ready for another journey. I’m like a chameleon, always changing, but always focusing on things I can do. I’m currently teaching myself how to program applications for Apple and Android phones. That’s my next chapter.”
Has she ever considered slowing down some, maybe taking it a bit easier? “I like to run myself in high gear as much as possible,” she laughs.