By Mike Cassidy >> Silicon Valley Dispatches
with the world Computer program opens doors for quadriplegics
For Christine Bakanoff-Adams and Gloria Kaswen too much of life has been about loss.
Losing vision. Losing the use of their legs, then not being able to use their arms and ultimately not being able to work their hands.
Bakanoff-Adams, 35 of Capitola, says she showed the first symptoms of multiple sclerosis at age 9.
Kaswen, 55 of Watsonville, was in her early 20s when she was first told she had MS. Symptoms would come and go until they just kept coming one after another without remission. "Each time it makes me sad," Kaswen says of the setbacks. "I went through a mourning, grieving period for about 10 years before I got to where I am emotionally."
But the two women have something in common besides MS – something that is helping them get something back, something that is about gaining something new.
Both Bakanoff-Adams and Kaswen were referred by therapists at Dominican Hospital in Santa Cruz to Jon Bjornstad, an independent software consultant in town who has built a remarkable program that allows quadriplegics to use a computer to do the things many of us do without a second thought.
Bjornstad sees software as an art form. He believes carefully crafted lines of code can possess the power to transform lives.
"I'm an artist," says Bjornstad, a studious-looking 59-year-old. An artist who writes code because it brings him joy. His masterwork is something he calls Sue Center, named for Sue Simpson, a paralyzed woman whom Bjornstad volunteered to help with technology issues in the 1980s. Bjornstad was eventually inspired to come up with his own software solution to her tech travails. Simpson has since died, but Bjornstad has continued to improve Sue Center, www.suecenter.org, and evangalize for his complex program. He says he's written more than 15,000 lines of code in the Perl programming language to date and more improvements could be coming.
Yes, there are other programs that will do some or all of what Bjornstad's does. But his has one big difference: He gives the software away for free. He set up both Bakanoff and Kaswen with his program. He provided tech support and still consults with them on a regular basis to keep things running smoothly.
Sue Center relies on a small camera tracking a reflective dot worn on the user's forehead. When a user moves her head, the cursor glides across the screen. Holding the cursor over commands, letters and icons has the effect of clicking on the item.
Sue Center allows users to create text documents; send e-mail; request photographs, jokes, horoscopes, weather reports and news from the Web. Users can play MP3s, store photos, make phone calls using Skype. It can serve as a television remote or as an on-off switch for electrical appliances.
"It's just made me very, very open to the world," says Bakanoff-Adams, a single mother of a 13-year-old daughter. Before she started using Sue Center about 2 1/2 years ago, she would sometimes sit watching the same television channel all day. Now she can change the station at will. Or better yet, she can send e-mail or read notes from her daughter's teachers or listen to Gordon Lightfoot (a favorite) – all without asking for help.
Kaswen, a Sue Center user since 2005, barely knows where to start when praising the program. She can read the Bible for her Bible study group and listen to Mozart. Yes, she's a big e-mailer and especially likes the fact that she can send short notes during the day to her husband, the CEO of a Watsonville company that makes shock absorbers for racing vehicles.
Best of all, she can maintain her privacy. No more does she have to dictate her letters to someone else, or have a third person read to her the notes that others have sent.
"Having some control over my thoughts and communication is in fact very important, because I don't have control over anything else," says Kaswen, the mother of two grown sons.
It's that sort of user satisfaction that keeps Bjornstad going, even if his program has hardly gotten wide distribution. In fact, he knows of only three people currently using the program. Part of that is because it takes some expertise to set up and support. (Bjornstad says any decent system administrator could handle it.)
Steve Jacobs, an Ohio entrepreneur specializing in accessible technology for the disabled, says it's not the number of users that makes Sue Center so significant.
"Jon has injected his heart and soul into developing this and he's giving it away for free," says Jacobs, who called Bjornstad on behalf of an MS patient in his area. "To get a sophisticated system like this would cost anywhere from $2,000 to $10,000."
In fact, Bjornstad says, it's not about numbers. It's about how much Sue Center changes the lives of the few who do use it.
And on that count, it's apparent that Bjornstad is doing very well indeed.
Contact Mike Cassidy at firstname.lastname@example.org or 408-920-5536.
Mike Cassidy followed up the above with another story on July 12th. He describes the trip to Croatia that resulted from his story.
Here is my report of the trip to Croatia: www.suecenter.org/stanka.
And finally, the Santa Cruz Sentinel published a story about the trip on August 23rd.
The following two newspaper articles appeared in the Santa Cruz Sentinel on April 29, 2007.
Jump to the second article.
Programmer Jon Bjornstad says he wrote the program as a gift.
Computer program helps multiple sclerosis patientsBy Peggy Townsend
Sentinel staff writer
If it were not for Jon Bjornstad, a Santa Cruz software programmer and former yogi, Christina Bakanoff-Adams says she would spend most of her time watching television or watching paint peel, which sometimes can be like the same thing.
Bakanoff-Adams, 33, has multiple sclerosis, which has left her paralyzed from the neck down.
But thanks to a free program written by Bjornstad that allows her to work a computer with the aid of a small reflective dot on her forehead, she can now send e-mail, write a shopping list and even do one of her favorite things: check her horoscope online.
A small reflective dot on Christina Bakanoff-Adams' forehead helps her send e-mail, write a shopping list and even do one of her favorite things: check her horoscope online.Bjornstad, who has worked for companies such as Santa Cruz Operation and Yahoo, wrote the program as a gift.
The program began after he befriended a woman named Sue Simpson, who had become paralyzed at the age of 35.
"All of us," says Bjornstad, sitting in his simple, spare home, "are just a wink away from being handicapped. We are all really fragile."
His first program allowed Simpson to type in commands since she could not speak. The user maneuvered a cursor over an alphabet of letters using the reflective dot and a Smart-Nav device. Whenever the cursor paused, the letter would be selected.
Bjornstad also included a list of frequently used words like "am" and "and," and a word predictor that learns the users' patterns. "H-E" might bring up the word "hello".
"But as with all software, you keep adding features," Bjornstad says and smiles. "It's the inevitable creeping featurism."
Over the years, Bjornstad added code so users can now send e-mail, keep a journal, read books, visit selected Web sites and play word games to keep their minds sharp.
Named "Sue Center," Bjornstad provides his free program to clients of Multiple Sclerosis Community Services and others who need it.
The program, Bjornstad says, is simply his gift.
"I don't have children," he says, "so this is my legacy."
For information, visit www.suecenter.org.
Flood of multiple sclerosis patients hits local organization hardBy Peggy Townsend
Sentinel staff writer
Christina Bakanoff-Adams, with daughter Seattle, gets help from the Multiple Sclerosis Community Services, which is strained by the number of patients it serves.Christina Bakanoff-Adams learned she had multiple sclerosis when she was 12.
By 19, it had put her in a wheelchair. Two years ago, she found she could no longer use her arms.
Now Bakanoff-Adams, a carefully groomed woman of 33, steers her power wheelchair with her chin and uses a dot on her forehead to check her e-mail and her horoscope on her computer. A special headset allows her to answer the phone without having to use her hands.
It makes life a little easier for the single mom who lives in Capitola.
But the organization that provided her with some of those tools is facing a crisis of its own.
Overwhelmed with a large number of MS patients that live in Santa Cruz and choked by a decline in donations, the Multiple Sclerosis Community Services program nearly closed four months ago.
An anonymous donor came up with $25,000 that allowed the small, autonomous organization to continue acquiring equipment for patients, connecting them to services and even paying PG&E bills for people when things get tough, but its outreach coordinator Wendy Lezin worries that the group will soon be in the same position again.
With about 500 people living with MS in this county - nearly twice the number that scientists would predict - the demand on the small organization is high.
"We are struggling tremendously," she said.
Pico is Christina Bakanoff-Adams' constant companion.
A mysterious disease
Multiple sclerosis is a disease of the central nervous system. It's a mysterious illness that causes the body to attack a substance called myelin, which helps nerve fibers carry electrical impulses. As the body tries to repair itself, scar tissue is formed. This scar tissue, known as plaque, interferes with the flow of information nerves send - resulting in symptoms that range from lack of coordination to blurred vision, to difficulty with speech and even paralysis.
It affects young adults mostly - more women than men.
The exact cause of the disease is still unknown, although researchers suspect it involves both genetic factors and environmental exposures.
It affects more people north of the 37th parallel than those below it. In the U.S., the 37th parallel runs from Santa Cruz to Newport News, VA.
And MS may be on the rise, although scientists are still debating whether the increase is due to better diagnosis or an actual jump in the number of cases.
In a study this year, scientists at the National Institute of Neurological Disorders and Stroke said nearly 1 out of every 1,000 people in the United States has multiple sclerosis - a figure that the national Multiple Sclerosis Society argues is still too low.
Even so, that figure is 50 percent higher than was estimated in a similar study in 1982 - and numbers in Santa Cruz are higher than would be predicted.
But whether more people here get MS, or more people who have MS come here to live, isn't clear.
Dr. Jennie Jet, a local rehabilitation physician, believes there is a pocket of multiple sclerosis cases here but says the reasons are unclear. "I think they are just here," she says.
Her office partner, Dr. Robert Quinn, says it might be that tolerance, accessibility and climate [heat is bad for most MS patients] attract people with the disease to the area to live.
But whether or not that's the reason for the large number of people living with MS here, "I just don't know," he says.
Christina and Seattle take Pico to 'Pooches in the Park' at the Polo Grounds County Park.
A sense of purpose
Lezin is a tall woman with long blond hair who says she gave up a six-figure job recruiting scientists for large companies to work for Multiple Sclerosis Community Services where she makes less than a quarter of that.
"I decided I wanted to feel a sense of purpose," she says.
The organization she joined, which was started almost 40 years ago and broke away from the national Multiple Sclerosis Society because it wanted to keep more of its money at home, provides a variety of services to those with MS.
She has, for instance, connected paralyzed MS patients with a local computer programmer who provides them with a free software that allows them to send e-mail and go to certain sites on the Internet without having to use their hands. She has paid the electric bill for the family of a man with MS who had lost his job, has given wheelchairs to those who have trouble getting around but don't qualify for a chair through Medi-Cal, and footed the $200 bill to have the batteries on motorized wheelchairs recharged.
Once she even bought an electronic memo device for man who needed help remembering the things he had to do each day since multiple sclerosis can affect cognitive abilities in some people.
Her clients are usually the most severely disabled and the financially strapped - those who have suddenly found themselves without a job, or a spouse or any support system.
"They really depend on us," she says. "When somebody needs something, I don't have bureaucracy or red tape so, that day, I can ... get what they need."
Part of her week is also spent at Pleasant Care nursing home in Santa Cruz, where 14 young people with MS live.
"They get $35 a month allowance. They are pretty isolated," she says. "They come there because they can't take care of themselves any longer and don't have family."
Sometimes, she does things as simple as bringing takeout Chinese food for them.
Several promising new drugs are on the horizon for MS patients, according to Dr. Emmanuelle Waubant, assistant professor of neurology and director of clinical research at the Multiple Sclerosis Center at UC San Francisco.
Researchers also are learning more about the disease.
They are studying the role of the Epstein Barr virus in the disease, according to Waubant, and also the role of sun and vitamin D, which more studies show may be protective against MS.
Neurologist Dr. Allan Dorosin of Santa Cruz notes that the lowest occurrence of MS is in people who live near the equator. "The number gets progressively higher as you go north or south," he says.
And what seems most predictive of someone contracting the disease, he says, is where you lived the first 15 years of your life.
Researchers at UCSF are now studying pediatric multiple sclerosis to see what risk factors may occur in childhood or even in the womb.
Christina Bakanoff-Adams uses the Sue Center program.
If money runs out
Lezin helped Bakanoff-Adams get a lift so it's easier for her to get in and out of her bed at her small, neat, ranch-style house. He's helped her with PG&E bills, and got a device so Bakanoff-Adams - who is alone for part of the day - can dial a phone.
She's also arranging for Bakanoff-Adams, who lives on $1,300 a month and spends about half her income on rent, to get a few sessions of a physical therapy program that uses horses as a way for her and her 11-year-old daughter to venture outside their routine, to escape from days Bakanoff-Adams spends mostly at home.
For a while Lezin worried she would not be able to do anything for Bakanoff-Adams and others like her, that the $129,000-a-year agency would run out of money. Then, she met a local man who, when he saw a video of Bakanoff-Adams and another woman with MS, wrote a $25,000 check for the organization, allowing it to get matching grants it needs to continue operations.
But Lezin worries what she will do when that money runs out.
"It's the most frustrating part of my job; when you want to do something for someone and you can't. You don't want to turn people away, because they are really helpless," she says.
"We're not out of the woods yet."
Lezin says the organization is in dire need of donations. If you'd like to help the Multiple Sclerosis Community Services, call 758-1663 or 1-866-622-4200.
Contact Peggy Townsend at email@example.com.