It Takes a Village: Creative Collaboration After Stroke, or How John Wood Got His Jokes Back John Wood loves jokes-hearing them, telling them, collecting and sharing them. Witty and well-traveled, the former Air Force colonel and IBM executive and his wife Helen, an artist and musician, moved from Maryland to Florida to retire. Once there, he set up an e-mail joke distribution list, and before long ... Features
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Features  |   May 01, 2005
It Takes a Village: Creative Collaboration After Stroke, or How John Wood Got His Jokes Back
Author Notes
  • Marat Moore, managing editor of The ASHA Leader, can be reached at mmoore@asha.org.
    Marat Moore, managing editor of The ASHA Leader, can be reached at mmoore@asha.org.×
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Special Populations / Features
Features   |   May 01, 2005
It Takes a Village: Creative Collaboration After Stroke, or How John Wood Got His Jokes Back
The ASHA Leader, May 2005, Vol. 10, 8-36. doi:10.1044/leader.FTR4.10072005.8
The ASHA Leader, May 2005, Vol. 10, 8-36. doi:10.1044/leader.FTR4.10072005.8
John Wood loves jokes-hearing them, telling them, collecting and sharing them. Witty and well-traveled, the former Air Force colonel and IBM executive and his wife Helen, an artist and musician, moved from Maryland to Florida to retire. Once there, he set up an e-mail joke distribution list, and before long more than 100 family members, friends, and former business associates were enjoying his computer-based comedy. He also archived hundreds of jokes in paper files, and printed out his collections to such rave reviews that he soon was producing extra “editions.”
The personal rapport offered by e-mail, though, was John’s communication mode of choice. Computers were second nature to the IBM veteran, who routinely prepared his taxes online and frequently e-mailed distant family members.
In March 2003, the stream of jokes from John’s computer suddenly stopped when, following back surgery, he suffered a series of near-fatal strokes that robbed him of mobility and speech, and silenced his funny bone.
“He was not expected to live,” recalled his daughter Helen, a senior official at the National Oceanic and Atmospheric Administration (NOAA).
“He had three hemhorragic strokes within a week, and developed pneumonia and septicemia. The doctor didn’t expect him to be able to communicate. But he was still strong, and we never gave up.”
Although John was quite weak in the early phase of his rehabilitation, the SLP in Florida who treated him told the family that he wanted to communicate.
“She was impressed with his perseverance,” noted daughter Helen. Two months later, she moved her parents, a devoted couple, back to Maryland, near her home. At first, because of differing clinical needs, they were placed in separate nursing homes, but “they were so miserable apart that we brought them to the same building, and then to the same room,” she added.
There his real recovery began. In addition to his strong determination, he got lucky-his computer-savvy daughter put together a team of dedicated professionals who used technology to help her father progress more than conventional wisdom might have predicted.
Beyond the “Plateau”
Jeannine Alleva was doing her clinical fellowship year under supervision at Potomac Manor Care in 2003, when Helen Wood helped her parents move into that facility, just minutes from her home. John Wood was added to Jeannine’s caseload.
“He had moderate-severe expressive aphasia with partial paralysis on his right dominant side,” she said.
For the first year after his stroke, Jeannine used word retrieval drills and other traditional treatments with her supervisor’s guidance. Over time, he became conscious of his errors so she concentrated on self-corrections. “He would say, ‘Dammit, that’s not right!’ she said.
“But he began to plateau using traditional methods, and as a Part B patient he couldn’t continue to receive services without significant improvement. We needed another avenue of treatment.”
Daughter Helen agreed. “He was frustrated because he wanted to continue to progress, and when people talked about his plateauing, he said, ‘They’re throwing me out!’
“He needed a different type of stimulus,” she said. “He loves games. If it’s just a drill, what’s the point? That was his attitude.”
Jeannine kept her eyes open for opportunities to help John-and noticed that one name kept popping up-Joan Green. Green founded a company based on her expertise in integrating assistive technology, specialized software, and other adaptive devices into speech-language pathology services to help clients improve their communication and cognitive abilities. She tracks a wide range of technology products for people with communication disorders.
“Suddenly, I saw her name everywhere,” Jeannine said. “The timing was perfect for a more contemporary approach.” She made an appointment for her client, and Joan conducted a series of detailed assessments of John’s interests, abilities, and function.
“This was not a cookie-cutter process. It never is,” Joan said. “Each client is different, and the challenge is matching their clinical needs with technology that’s fun and challenging but not beyond their ability to learn in order to maximize their rehabilitation potential.”
For John Wood, she began with game-based technology, and then suggested an adaptive e-mail program, “ICanEmail,” so that he could reconnect with his far-flung social and family network. Using the program, John could send and receive voice messages, a feature that sold it to Helen, along with the fact that her father could hear everything on the screen, including the instructions, read aloud.
With Helen’s OK, Joan taught Jeannine how the software operated and they explored Web sites that would send John jokes each day as he tried out the program.
Jeannine, familiar with computers since her university years, was intrigued. “Using computers and technology in treatment piqued my interest,” she said. “Clinicians are always pulling things off the shelves and spending time copying materials to use in treatment. Having everything on the computer sounded wonderful to me.”
A High-Tech Team
Helen set up a workstation in her parents’ room, bought a computer and installed the software. ICanEmail offered many benefits for her father-the program reads messages aloud as the text appears on-screen and allows John to record a voice message that is then sent as an e-mail attachment, like a video file. “E-partners” with whom the user is corresponding can still use their regular e-mail software to receive and reply to senders using the specialized e-mail program. Although receiving and sending e-mail messages was his top priority, John also learned other language-based programs, and enjoyed adaptive computer games.
Trial and error was part of the process of customizing the technology to her father’s needs and abilities.
“Since he couldn’t type, we set him up with a mike and headset,” Helen said. “We tried an ABC keyboard, which didn’t work, then a large track ball, which he didn’t like either. Finally we tried a mouse, and he quickly learned to use it with his left hand.”
Improved cognition was another goal. “I kept exploring different ways to help his cognition using the e-mail program so that it could be integrated into his regular treatment,” she added.
Then she tackled the technical roadblocks. The e-mail program had problems interfacing with outside e-mail and lacked some features that John remembered from his previous use of e-mail software.
“Dad needed the ability to forward jokes to his friends-those jokes that were ‘worthy,’” she said with a laugh. “He needed to cut and paste text for simple editing, and import the address book he had so that he could bring in his many, many e-mail addresses of friends and family without my having to type them all in.”
To solve those problems, Helen went to the source-RJ Cooper, the California-based software developer and computer engineer who had created ICanEmail. Helen worked with him by e-mail to customize the program to add all the functions her father needed, particularly the ability to forward messages, which RJ developed. In addition, after the message appeared onscreen, a “button” was added for the computer to voice the entire message from beginning to end, without stopping. This made the program less frustrating for John to use.
“Finding RJ was a stroke of luck,” Helen said. “He sent me a test code and I ran it and told him about the error messages, and he instrumented a new package, and walked through it with me every step of the way so that I could build a record of what was happening with the operating system.”
Back at Manor Care, Jeannine implemented the training and worked with John at his workstation.
“We concentrated on his ability to learn the sequence of steps in the program, and to recall them,” she said. “Over time, his cognitive skills improved so that he no longer needed verbal prompting but used visual cues. Now he is able to access, read, and reply to his messages independently.
“Using this e-mail program has brought the spark back to him, and now he’s communicating with family and friends,” she said.
In leading the team, Helen has been a “devoted daughter and a wonderful technical support,” Jeannine said, by working with Cooper to improve the software.
“Without Helen’s consent to consult with Joan, her sense of urgency in obtaining what was critical and her constant communication with Cooper to improve the software, we wouldn’t have gotten as far as we did. When we ran into technical problems, Helen was our in-house technical support.”
Helen, meanwhile, praises Jeannine as a “huge advocate” who still sees her father each week as a private-pay client despite taking another full-time job. A new SLP took over regular treatment, but the three checked in regularly during the transition to track John’s progress.
“You shouldn’t give up on people too early,” Helen said. “Following strict interpretations and guidelines on plateauing may work for some people, but my dad continues to push ahead as long as he sees there’s a reason for it. Think of Christopher Reeve-he got off the respirator and pushed his recovery farther than anyone thought possible.”
Training John to use the software has benefited Jeannine in her clinical work.
“It’s so wonderful to use technology when it fits the client-you have everything at your fingertips, just a click away,” she says. “Our sessions were easier to prepare for and also more fun and engaging, in terms of using the computer interface.”
But beyond building John’s computer skills, she has thoroughly enjoyed working with him and participating in his recovery-and often tells him so.
“He’s fantastic. He’s so witty! Part of my role beyond being a clinician is encouraging him to continue to communicate, keeping up his confidence in using the computer, and celebrating his success.”
“It takes a village-it really does-to build the maximum quality of life for a stroke survivor,” she says. “It’s not only about what you as a speech-language pathologist bring to the table. A lot depends on the having the right tools available, the family’s active involvement, and the patient’s motivation. John is lucky-he has it all.”
Members of this high-tech “village” collaborated on a common goal-to help John reconnect with his world through communication. “We’re on the same page, working on the same goals. We stay in contact with each other,” said Jeannine.
And what were the outcomes for John Wood?
“I couldn’t say anything at first. I couldn’t pick up a letter. And now I can communicate again. It’s wonderful!” he said.
Recently John made another discovery-he can again read the newspaper and understand it, a “totally new development nearly two years after his series of strokes,” Helen said.
“I believe this is possible because of the ‘drilling’ that has taken place, with his various software packages, especially the program that voices his e-mails while highlighting each word as it is read aloud.”
Her father also ventured into Web-based news-with the online version of The Washington Post being voiced to him as well as online newspapers from Florida and Kansas-and then, as his cognition improved, he no longer bothered with the voice function. During a recent hospital stay, when a newspaper was delivered to him, “he drew my attention to an article on corporate acquisitions! Although he had trouble saying what he wanted to, he clearly understood what he was reading,” Helen added.
“The bottom line is that with continued work, drive, commitment, and ample support, it’s possible for at least some stroke victims to far exceed initial expectations, and thereby regain some essential elements needed for quality of life.”
At his computer station, John gestured toward Jeannine with a twinkle in his eye. “Through all this, she didn’t even get upset when I lost my temper!”
With his headset and microphone, with images of his grandchildren on-screen and e-mail jokes waiting to be opened, one outcome is certain-John Wood’s Comedy Central is back in business.
The Computer/Client Match

Joan Green first got hooked on technology nearly 20 years ago during her Clinical Fellowship at Fairfax Hospital in northern Virginia.

“Back then it really didn’t add much to treatment,” she says. “It actually slowed down the process because the computers in the lab often broke down, the programs were just replicas of the paper/pencil type activities that were in the workbooks, and the programs weren’t very motivating to clients.”

In two decades, technology has improved dramatically, and is now widely used in clinical treatment.

“Technology not only can improve outcomes but can boost independence, self-reliance and self-esteem,” Green says. “Whether you’re young or old, computer-savvy or not, whether you speak another language or have a mild or severe disability, you can still benefit if you are matched up with the right computer tool.”

Assistive technology works in two ways, she says-by compensating for deficits and improving skills.

For example, she points out that people who can understand spoken language but have trouble reading can utilize a computer that reads aloud. For people who understand better when they can hear words and see them at the same time, written materials can be scanned into a computer that can then read the material aloud. Computers can help non-speaking people communicate; clients can press a button with a picture and messages can be spoken or thoughts can be produced. Adaptive devices can alter aspects of a person’s environment to help them communicate more effectively.

Integrating computers into daily routines can improve areas of communication and cognition, and help compensate for daily challenges, she says. Daily computer stimulation can be an interesting and fun way for clients to receive multi-sensory input with consistency and repetition of language and cognitive concepts.

There are financial benefits, too. Although the purchase of the computer, software, and training is an initial expense, computer-aided treatment conserves clients’ health insurance benefits, and enables them to have more practice time and take charge of their recovery.

But computers can’t solve every problem. “Technology doesn’t replace treatment with a speech-language pathologist,” she said. “And it can be a problem if they slow down the rehabilitation process and cause more frustration.”

The key factor is choosing software that the client can use effectively and which meets the client’s clinical needs. Another challenge is for clients or providers to know what to do when the computer breaks down.

“We need to analyze the individual’s support structure and learning style and match that with the wide selection of devices that are on the market,” she said. “The technology then needs to be introduced in such a way as to be easily learned and integrated into daily life.”

Contact Joan Green, founder of Innovative Speech Therapy, at joan@innovativespeech.com.

Resources on Stroke
Information for clients and families
Spotlight on Special Interest Divisions

Division 2, Neurogenics and Neurogenic Speech and Language Disorders

To learn more about aphasia and related topics, consider joining Special Interest Division 2, Neurophysiology and Neurogenic Speech and Language Disorders. The division is a leader in the field of neurogenics. It supports research through grant opportunities, including a $1,500 grant in honor of Carol Frattali, which supplements the ASHA Foundation Research Grant for New Investigators. Division 2 sponsors Web forums on best practice and has provided content for ASHA CE Products products on aphasia, dysarthria, and autism spectrum disorders.

The division’s member newsletter provides cutting-edge information on topics including assessment and treatment for TBI, dementia, apraxia, aphasia, and other speech and language disorders. Division 2 is an ASHA approved CE Provider. For no extra charge, affiliates can earn CEUs through self-study of the newsletter. There are many other benefits.

Visit the Division Web pages for more information. A membership application form is available online or by contacting the ASHA Action Center at 1-800-498-2071.

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May 2005
Volume 10, Issue 7