Christina Bakanoff-Adams started showing signs of multiple sclerosis when she was 9 years old. By the time she was 19, she was in a wheelchair.
The vivacious 36-year-old, who grew up in Scotts Valley, is now paralyzed from the neck down and controls her wheelchair using her chin.
But despite the loss of her ability to move much beyond a flick or nod of the head, Bakanoff-Adams can change the channel of the television, compose e-mails, play her MP3s and surf the Web — all made possible by a program that allows her to work a computer using a small, reflective dot on her forehead.
“I was bored for awhile. You can only do so much on your own,” said Bakanoff-Adams, the single mother of a 15-year-old daughter. “Now, I can even play computer games.”
Bakanoff-Adams was referred by a therapist at Dominican Hospital in Santa Cruz to Jon Bjornstad, a local independent software consultant who built a groundbreaking program that allows quadriplegics to use a computer for the tasks most people do without a second thought.
Bakanoff-Adams said that everything she wanted to do, Bjornstad made possible.
“He is just brilliant,” she gushed. “He made everything so easy. I can’t see very well, so he made everything larger onscreen. It’s nice to be able to e-mail my dad and check my horoscope.”
Bjornstad, 60, who lives in Santa Cruz, said he sees software as a way to open up the world. He calls his masterpiece Sue Center, named after Sue Simpson, a mute quadriplegic whom Bjornstad helped in the late 1980s.
“Her computer started shutting down, so I decided to make her something myself and give it a go,” Bjornstad said. “It evolved from there.”
Simpson has since died, but Bjornstad has continued to vamp up Sue Center (www.suecenter.org). Perhaps the most notable feature is that he gives away the software free of charge, a change from similar but pricier programs.
“I’m more of an artist than a businessman” Bjornstad said. “People that need the program are handicapped in many ways, including economically. I can’t see myself charging them. I make money through other projects, and there is pleasure that comes with giving a gift.”
Though Bakanoff-Adams was set up with Sue Center four years ago, Bjornstad still provides technical support and checks in with her regularly to keep things running smoothly.
Sue Center uses a small camera that tracks a reflective dot worn on the user’s forehead. When Bakanoff-Adams shifts her head, the cursor glides across the screen. Holding the cursor steadily over a command, icon or letter for a few seconds has the effect of clicking on the item.
The software lets users create documents, send e-mail and scour the Web. Phone calls can be made using Skype. Sue Center can also turn the TV and other appliances on and off.
Bjornstad said Sue Center users live in Croatia, India, Canada, San Francisco and Ohio. Most recently, the engineer finished making a Spanish version for a young man in the Bay Area.
Before Sue Center entered her life, Bakanoff-Adams said, she would sometimes sit watching the same television channel for hours. Now, she can change the station any time.
It’s such small victories of independence that give her the most infectious joy.
“I’m extremely self-sufficient and independent. I always have been,” she said. “If I don’t do it, it doesn’t get done.”
Inside her comfy Capitola home, one of Bakanoff-Adams’ favorite things to do — aside from holding her constant canine companion, Pico — is blast her music loud. Her eyes shine when the beats and base pour out of the speakers. They also shine when she talks about riding horses, which she does through a sponsorship program at the Monterey Bay Horsemanship and Therapeutic Center.
Bakanoff-Adams said twice a week she is lifted onto a horse named Lizzie with an instructor who holds her on the saddle.
“I also surf and kayak. I get in a wetsuit, and then really cute surfer guys lift me onto a surfboard. The last surfboard I was on actually had a chair,” she said. “But this year, I really want to go skydiving.”
In addition to being an adventure junkie, Bakanoff-Adams is an advocate for many causes, including medical marijuana use. State-funded studies in the past decade have shown marijuana to be effective by itself or in combination with other drugs for the muscle spasms associated with multiple sclerosis, according to the University of California’s Center for Medicinal Cannabis Research.
“I have a daughter and don’t want to deal with the funky side effects that come with medicines like Vicodin and Valium,” Bakanoff-Adams said.
While reflecting on her life as a mother with a disability, she continually counts her blessings — which some might call a feat, given her circumstances. She stays positive regardless.
“I like talking to people, to show that there is life out there no matter what happens,” Bakanoff-Adams said. “Everyone said I couldn’t handle this, that I couldn’t do it. But I’ve done everything I’ve wanted to. I have a beautiful daughter.”
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