Empowering patients, preserving dreams

For more than a decade, Curt Johnson has served as a rehabilitation counselor with the UW Medical Center. Johnson, who likes problem-solving and mechanical tinkering, brings a unique set of skills to a challenging job.”Honey, I love you. Tell my girls I love them too.” Simple phrases, uttered a thousand times a day, by thousands of people — effortlessly. But, what if you’re suddenly a 35-year-old mother of three who has no control of any bodily movement below your nose? Your cognition is perfectly intact but you’re trapped within your body. How do you communicate? How do you take back your life?

These are the kinds of things Curt Johnson thinks about every day. Johnson’s job is to help patients — many of whom have experienced catastrophic injuries and illness — regain their independence and the ability to communicate.

On an unusually sunny and warm day, Johnson enthusiastically guides a tour of his hospital workplace and passionately talks about the types of assistive technology he employs every day to help the patients he serves. Gadgets and spare parts fill his office and patients greet him warmly.

About 30 percent of Johnson’s cases involve catastrophic injury or illness, such as spinal cord injuries, multiple sclerosis, or, as in the case of the mother described above, brain-stem stroke.

Again and again Johnson has found that a key element of rehabilitation for many of his patients — and possibly more so his catastrophic injury cases — is learning, or relearning, how to use computers. Johnson explains the positive impact computers have on his patients: “In a lot of cases of catastrophic injury, the patient has no independence. They’re lying in bed and have everyone doing everything for them. What they want most is independence — the ability to do things for themselves, by themselves.

“When computers are made available to patients, instead of sitting and watching TV, or thinking about their disability and getting more and more depressed, they become active — and proactive. They begin researching areas that interest them, therapies they think might help them, or medications. Computers make a huge difference in how patients accept and cope with their current issues, how they participate in therapies and, ultimately, how they go on with their lives.”

Due to the severe impairments of many patients, however, a standard computer set-up is not enough. Many patients need assistive or “adaptive” technology, too. This includes both hardware and software.

“We have patients who are motivated to communicate via computers and to use them as a tool to reach out of their hospital room, but often they are not able to use the standard keyboard and mouse,” Johnson says.

Over the years Johnson has built lots of useful assistive technology himself — using his ingenuity, mechanical skills, and parts and materials he’s picked up from local hardware stores. Many people with, for example, limited dexterity, just need a simple solution — sometimes a very inexpensive one,” he says.

“If you can set up a simple switch with some sort of selection software such as an on-screen keyboard — they can use a computer quite effectively. If they can use a computer, they can gain back some of the control of their lives their injuries have taken away. They can communicate with their loved ones. They can keep in contact with their workplace. They can go out in the world and explore — do research, and grow. They can work. They can go to school.”

When he needs more sophisticated tools, Johnson turns to another UW program he calls “invaluable” — the Washington Assistive Technology Act Program (WATAP) — a MARC (Microsoft Accessibility Resource Center).

“WATAP is a federally funded program,” Johnson explains, “and one of the things they do is purchase all kinds of new assistive technology that’s on the market. They bring it in and let people try it and see if it works for them. WATAP has been a tremendous resource for me. I’ve learned a great deal from them and their expertise has helped many of my patients.”

“But, some solutions require no additional hardware or software at all — they come with the computer,” Johnson says. Built-in features in Windows-PCs such as Sticky Keys (that allow key combinations to be entered sequentially rather than simultaneously), and Filter Keys (that tell the computer to ignore inadvertent keystrokes), and Repeat Keys (that tells the computer how long to wait before entering a repeat keystroke) are all many people need to be able to use the standard keyboard effectively.

“For people who need more sophisticated assistive technology like screen readers and voice recognition systems, or learning and cognition tools such as word prediction programs—there are great products out there,” Johnson says. “We can help introduce patients to these products and later, if the patient needs help getting the product permanently — to return to work, or to find new work — help is available.”

An important organization Johnson works closely with is theWashington State Division of Vocational Rehabilitation (DVR), a division of the Department of Social and Health Services. DVR’s mission is to “empower individuals with disabilities to achieve greater quality of life by obtaining and maintaining employment.” Often that includes securing assistive technology and training. Johnson helps patients find out about such resources.

In the case of the 35-year-old mother of three, Johnson was able to set her up with a computer and on-screen keyboard program that would allow her to select programs and commands, and to run Microsoft Word all using a selection switch placed above her eyebrow. She activated the switch by raising her eyebrow to make a selection. Her message to her husband and children was the first communication beyond yes/no answers she was able to give following her stroke.

“I love my job,” Johnson says, “because I feel like I can help preserve dreams — help people keep their dreams alive. Our team brings them ideas and helps them solve access problems, and they do the hard work. We show them the possibilities and our reward is seeing their hope return.”

(C) 2007 Microsoft Corporation. All rights reserved. Republished with permission from Microsoft.