1998 Conference Proceedings

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COGNITIVE ORTHOTICS ENHANCE THE LIVES OF USERS WITH COGNITIVE DEFICITS

Marilyn M. Bergman, Ph.D.
MASTERY Rehabilitation Systems(tm) Inc.
105 Bala Avenue
Bala Cynwyd, PA 19004-3307
Voice/TDD/Message: (610) 664 2025; (800) 859 2828
FAX: (610) 664 1099
Email: MASTERY@Esteps.com 

INTRODUCTION

An integrated multi-function cognitive orthotic computer system was designed as a compensatory assistive tool for individuals with cognitive deficits (Bergman & Gordon, 1992; Bergman, 1991). Persons with brain dysfunction using cognitive orthotics (Bergman & Kemmerer, 1995-1996; Bergman, 1997; Bergman, 1996) managed specific tasks, extended the domain of possible activities, and compensated for memory, cueing, sequencing and organizational deficiencies.

Four individuals were provided the Essential Steps (R) cognitive orthotic system configured to their unique needs, interests and impairments. These individuals have been using cognitive orthotics between two and 11 years. Usage data recorded by each person's computer system documented type, frequency and duration of every action and activity sequence. These data provided means for monitoring the users' activities with the cognitive orthotic system. Usage data were analyzed, in conjunction with direct observation, therapists' notes, remarks of family and friends, and self-report.

These four case studies illustrate how cognitive orthotics promotes reliable, self-sufficient functioning in meaningful daily activities, even years beyond the initial interval of direct instruction and supervision.

* CASE REPORT 1

A woman (MJ) sustained serious closed head injury in a vehicular accident more than three years prior to this scene. Among her extensive chronic residual deficits were visual neglect with associated visual spatial imperception, impaired visual scanning and sequencing, poor organization, impaired integrative reasoning, mild left hemiparesis, and severe memory deficit (Bergman, 1991). When writing she used only the far right inch or two of the page, printed coarsely, and reversed letters and numbers. She routinely misplaced paper and pencils, notes, etc., and even when the pages were stored properly in her journal, she (in her words) had to "go through space, find the journal, and turn page by page. And even then [she] could not find what [she] wanted." She likened the effort to the sensation of "falling into a hole, into a man hole without a cover."

As part of her rehabilitation in a comprehensive brain injury program, she received cognitive rehabilitation which included extensive instruction on a computer and the software purchased for her (Quicken; Bank Street Writer). These packages presumably were selected to enable her a means for check writing and for written communication. The Apple computer required her to turn on a switch on the rear left and then insert diskettes into a drive on the front left, a major challenge because of perceptual difficulties with space to her left. She managed these actions using touch only, keeping her eyes closed to avoid her visual-spatial distortion. She then had to execute the sequence of steps to boot the computer and enter the desired software package, all the while remembering the goal or purpose for each time she was using the computer.

Her cognitive retraining notwithstanding, she remained unreliable and inconsistent in her ability to boot the computer and software program, dependently turning to her therapist, children or companion for guidance and reassurance. She continued to require the weekly services of a bookkeeper, who could not keep the account balanced, and phoned the local bank manager as many as five times a day. She could not put a check with a corresponding statement into the correct envelope. She was unable to feed checks into the printer. She lacked appreciation for numerical amounts and overspent using credit cards. She was being advised that declaration of bankruptcy was the only viable solution to the large debt she had incurred. In short, aside from the supervised typing of numbers, she was completely unreliable and dependent in managing her finances.

One Sunday she questioned whether she had paid three bills. After a series of aborted attempts to enter Quicken, she gained access to her register. She worked diligently for eight hours, scrolling from screen to screen, writing panicked notes to herself to "pay attention" and "stay alert," and changing the figures in previous entries. By the end of the day she still was unable to find (or to remember whether she had found) the desired entries. The computer register, reflecting her confused changes of check and deposit amounts, displayed a negative balance of $ 6,500.00, which she knew was in error but could not correct.

Despondent and enraged at herself, she was convinced that she was truly "stupid," that her condition was "hopeless," and that she was worthless. Her body and head ached, and she was reduced to tears. With the suggestion that the computer program did not meet her needs, she insisted that she had been told it was "the simplest program on the market." She further insisted that if she could not use the simplest program, then there was something terribly wrong with her, that she was so damaged that she may as well not live. The author replied that the problem was not with her, but rather with her hardware and software. And in response to this exchange, a cognitive orthotic system was designed for MJ.

With this cognitive orthotic she became independent in managing her routine finances. For over ten years she has been writing and mailing checks correctly, and keeping a balanced account. She budgets effectively, has paid off her debts in full, and remains cognizant of spending limits. She does not phone the bank for repeated daily balances, and uses an accountant once a year for tax preparation. Parenthetically, each January she provides the CPA a printout of her transactions for the previous year, with the receipts and check stubs which she has been guided to file by the orthotic. The cognitive orthotic system enables her to keep a daily journal, which she reviews not only for current information, but also to recapture information from the past. Prior to a holiday she typically reviews her activities for that occasion in previous years, thereby independently recreating a body of information upon which to preplan for the upcoming event. Often she sits to her journal and expresses herself with abandon, thereby achieving emotional release without the behavioral outbursts and panic previously typical. She maintains a log of important conversations, both for telephone and direct discussions. She usually reviews her most recent entries with any given individual before making her call, and in this manner appears current and avoids embarrassing repetitiveness in her ensuing contact. Once, believing that an individual was deliberately misleading her, she independently accessed her notes from the discussion which had occurred months in the past; in review of her notation, she confirmed that her recall was accurate and asserted herself appropriately.

The system cues her about appointments and things she needs to do, and ensures enough advance notice with repeated reminders that she is able to be ready when her driver arrives. A simplified text writer has served variously as a means for correspondence, a repository for varied incidental facts and details, and a means for gathering important information for serious decisions. Using her notebook computer she was able to compile questions for her physicians, who got into the spirit and typed the answers into the document, which she took home, reviewed and used to discuss her medical situation with her adult children. In this manner she became knowledgeable about types of cardiac surgical interventions and made a competent decision for herself, maintaining her dignity and gaining the respect of her children and doctors. No one questioned her understanding or capacity to make this decision because she so clearly had reviewed and absorbed this important information, using the cognitive orthotic.

Her usage has been continuous for 11 years, with the exception of a 10-day hiatus occasioned by electrical surge damage to her hard drive. During these 10 days she put her activities on pause, finding functioning too stressful with manual compensatory methods. Within two hours of the system's reintroduction, she had contacted and rescheduled with anyone whose appointment she had missed, she wrote checks that needed to be mailed, and she returned calls to people who had been expecting to hear from her. She did all this without instruction or reminders from other people. With the system she is able to be more independent and self-reliant than with any of the conventional or manual methods she had tried. Her family reports feeling more relaxed and confident about her ability to manage with less dependence on them. And she too reports increased self-esteem and self-confidence knowing she can manage herself and her household with the cognitive orthotic system. Truly, in the words of her companion, the cognitive orthotic is "her life line."

* CASE REPORT 2

BH was 11 years old when, while bicycling, he was struck by a motor vehicle, remaining in a coma for months. At age 22 years he remained with Borderline intelligence, problems in sequencing, motor planning and judgment, memory deficits and poor motor coordination. He had had extensive brain injury rehabilitation and special education. He was described as good-natured and generally unmotivated, despite his keen interest in making, spending and saving money.

For five years therapists had attempted unsuccessfully to teach him to write two checks per month and keep a balanced account. In the words of BH's cognitive retrainer, his register was "a train wreck." For years his parents and therapists attempted to get BH to keep a journal, again without success. Both these activities, managing finances and keeping a journal as a memory aid, were considered necessary if he were to be able to move from his parents home into an apartment of his own. Notwithstanding all the nagging "reminders," (e.g., remarks from family and therapists, and written notes on bulletin boards, mirrors and in his wallet), he seemed unable to manage these two

At age 22 he was provided a cognitive orthotic with journal and money management modules. BH independently made journal entries 27 of the first 30 days of cognitive orthotic use, without reminders from other people. In contrast, in the 30 days immediately preceding introduction of the orthotic (and with considerable parental nagging), he made brief journal entries on only three occasions. When asked to explain the difference between the manual and cognitive orthotic methods, BH indicated that writing for him is slow, arduous and unreadable with pen and paper; he saw no point to making the effort. With the computer orthotic, however, he could record information clearly and easily, without feeling rushed or pressured, and then be able to find and read what he had written. He even commented on improvement in his typing skills.

Similarly, with the money management Essential Steps (R) module he was reliable in writing checks after two training sessions of an hour each, scheduled eight days apart. Because he used a desktop computer, he could not take the system to the bank branch office or ATM sites. For transactions done without his cognitive orthotic, his forgetfulness introduced failures in recording into his ledger. He was provided a voice cue (in his own voice) to look in his wallet for bank and/or ATM receipts. Thereafter his account has remained accurate.

Now, six years later, he writes in his journal about 90 per cent of the time, typically missing weekends when he may be away from home. He writes about 14 checks per month and keeps a balanced ledger. With these skills he has progressed from his parents house into his own apartment. Resources previously funneled into the fruitless efforts to get him to write and manage money with manual methods were freed up. Time and energy thus made available have gone into cultivation of necessary social and vocational skills. He is maintaining employment and has become increasingly appropriate in his social milieu.

* CASE REPORT 3

A pastor (SD) remained with macular-spared vision and serious memory impairments almost three years after sustaining closed head injury in a motor vehicle accident. He had been provided a personal computer, laser printer, Word Perfect, and extensive training. He followed printed instructions to access the single document file in his computer, and did not know how to create new files. A prolific writer, in three years his journal stretched into a continuous document thousands of pages in length. He found writing cathartic, but was unable to retrieve his notes from specific days because of the lack of method and organization.

From the outset he was able to enter the journal in his cognitive orthotic. The continuous Word Perfect document was segmented by days, each then entered into his journal at the appropriate date. Thus he regained access to his notes from any particular day out of the preceding three years. His writing is still prolific, but the organization and structure provided by the system permit easy retrieval of specific desired information.

With the consistency inherent to the cognitive orthotic, SD easily acquired the ability to manage other aspects of his daily living. He manages his appointments, and writes sermons and notes on scripture, and keeps strategies and task sequences in his computer for reference. After a year he no longer required the services of the cognitive therapist who was working with him on community re-entry skills. Despite his wife's anxiety about their finances, he assumed responsibility for payment of basic family expenses. He currently is preparing to resume work as a pastor, and is adept at using his system for personal and vocational applications. As compared with his previous compensatory strategies, SD is less impulsive and more effective now that he has integrated the cognitive orthotic into his daily activities.

* CASE REPORT 4

McJ was in his forties when an intoxicated driver struck his vehicle head on. He sustained multiple injuries including fractures of cervical vertebrae and closed head injury with brief loss of consciousness. This was his second closed head injury in seven years; he had made a full recovery from the earlier accident. Chronic deficits from the injuries sustained two years ago include: impaired concentration; poor time awareness, extremely slow mental processing; effortful slow oral communication; impaired memory storage and retrieval. His wife complained about his general ineffectiveness. His income as a consultant dropped as his best accounts elected not to renew their contracts. He was unable to keep track of his clients, his conversations with them, or the deadlines for each. His neurologist noted that "he is clearly impaired and needs help. I cannot imagine how he functions on a daily basis, especially at work."

McJ's principle compensatory strategy was that of jotting notes in tiny script onto a small post-it attached to the back of a cigarette pack housed in his shirt pocket. These post-its accumulated on the desk in his office. Some of the note reminders were effective cues; most fell into the abyss of paper. As a consequence, he was delayed in filing tax returns, remiss in not returning calls to clients, and generally forgetful of daily necessities. He also tried to use off-the-shelf computer software on a Windows '95 platform, but gave up after crashing the conventional software 28 times over a three day interval.

The introduction of the Essential Steps (R) cognitive orthotic provided him with much needed structure and organization. The first thing he did was transfer a voluminous number of personal and client entries into his directory. He not only recorded the usual data (name, address, phone number), but also used areas provided for travel directions, names and information about associates and family members, and miscellaneous notations. He used the system to track all his telephone contacts, and to gather and store information about interest rates, house settlements, and other detail burdened topics. He has become creative in adapting the system to meet his needs, particularly his business needs. He laughingly refers to the scheduler's voice output reminders as the computer's "talking to [him]. His repeated remark about Essential Steps (R) is that it is "logical. It makes sense." And he has never crashed his cognitive orthotic system.

He still uses post-its on his cigarette pack when away from home and when the notebook computer is not handy, but he enters the paper notations into his cognitive orthotic system at his first opportunity. He backs up his system via the modem multiple times each day, to ensure the safekeeping of his data.. And gradually he is injecting organization into a previously chaotic personal and business situation. His wife has remarked on his improvement, and he is getting his fiscal affairs in better order. Although his income is reduced, he has not had to close his business, as he feared might be necessary prior to using the cognitive orthotic.

SUMMARY

Four case reports clearly demonstrate that the cognitive orthotic in brain injury rehabilitation is a meaningful compensatory assistive device. The analyses of computer captured usage data document consistent, reliable, meaningful use of cognitive orthotics in daily activities for the four individuals with cognitive deficits highlighted in these case reports. Each person developed his or her unique pattern of usage, as reflected in the usage data, and demonstrated increased self-sufficiency and efficacy at home, work, and in the community.

REFERENCES

Bergman, M. M. (1997) People with Cognitive Challenges Can Enjoy Rapid Success in Acquiring Skills and Managing Their Lives: The Exciting Breakthrough of Cognitive Orthotics. Proceedings of the 1997 Technology and Persons with Disabilities, California State University, Northridge (CSUN), RAPIDTEXT, 230 Newport Center Drive, Suite 230, Newport Beach, CA 92660, or http://www.csun.edu/cod/, or LTM@csun.edu.

Bergman, M. M. (1996) Integration of Cognitive Orthotics into Daily Living: Long-term Usage by Persons with Brain Damage. Effective Strategies for Assessment and Intervention: The 21st Annual Williamsburg Conference Postgraduate Course on Rehabilitation of the Brain Injured Adult and Child, Medical College of Virginia. Williamsburg, VA., 417-418.

Bergman, M. M. & Gordon, G. E. (1992) Customization of a Multiple Function Computer Orthotic system for Two Individuals with Differing Patterns of Chronic Traumatic Brain Injury (TBI). Journal of Clinical and Experimental Neuropsychology 14:1, 76.

Bergman, M. (1991) The Necessity of a Clinical Perspective in the Design of Computer Prostheses. Journal of Head Trauma Rehabilitation 6:2, 100-105.

Bergman, M M. & Kemmerer, A. G. Adaptive Software Design For People with Cognitive Deficits: A Case Illustration (Fall-Winter 1995-1996). SCR Newsletter: VOL. III, No.2, 4-7.


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