Patient Stories

What to Do When Cognitive Rehabilitation Does Not Work

Amy’s story: A college student’s dramatic recovery

Background

Amy was a rising college senior when she was struck by a truck’s mirror while out for a run, suffering a traumatic brain injury as a result. Medical complications, including meningitis and shunt problems, complicated her recovery and further decreased her cognitive abilities.

After one year of extensive inpatient medical care and comprehensive brain injury rehabilitation, the outlook was still grim: Amy was not expected to be able to live independently, and her family was told that she was destined for life in a group home and sheltered workshop.

Amy was discharged from inpatient rehabilitation to home. At that time, Amy needed substantial caregiver support and constant cues throughout the day, including daily activities such as eating and toileting. Her deficits included short-term memory, slowed information processing, difficulty learning new information, distractibility, and broad executive dysfunction. She was not expected to make any cognitive gains.

Keys to Amy’s recovery

Unwilling to give up, Amy’s family pursued therapy. Fortuitously, the speech therapist they found was affiliated with Neuro-Hope. Amy was then 22 years old and one and a half years post-TBI when she began Neuro-Hope therapy.

The speech therapist led Amy’s therapy, which was provided via daily appointments and concentrated on getting Amy used to being home again and helping her become active again in her community, after a year in medical facilities.

Amy’s strengths--which included good social skills, a pleasant demeanor, an athlete’s persistence and a penchant for physical exercise—were incorporated into the therapy approach. As her therapy progressed, Amy began to participate more in the community around her--getting together with friends, going to a local gym for physical therapy, and attending the local high school’s sporting events.

Incorporating technology into cognitive recovery therapy

The initial focus of the therapy was acclimating Amy to being home again and providing simple cognitive support using the technologies the family had at home.

The speech therapist leading Amy’s rehabilitation recognized that Neuro-Hope, as a technology organization, might be able to build software for Amy that she could use to cue herself during the day, enabling her to rely less on her mother for constant cues (as well as on the many Post-It notes around the house, which had proliferated to the point they were no longer helping.)

Working closely with Amy and the speech therapist, Neuro-Hope designed an app around Amy’s needs and abilities. The key features were:

• The ability to send a voice message--in Amy’s own voice--to her phone, interrupting whatever activity she was involved in, telling her what she needed to do “now”

• Providing efficient cues via the message she could use to do the next activity

• Enabling Amy to print out a list of events each day from the Cell-Minder application Neuro-Hope provided

• Synchronizing detailed instruction for the day’s events for Amy to use after receiving the Cell-Minder voice message

• The ability to customize the software and the software development resources to make enhancements as she used the app, which included a customization module that would make the app intuitive to her at her current level.

Neuro-Hope’s Cell-Minder app includes a calendar and delivers cues to the client in their own voice and in a timely manner. Cell-Minder worked well for Amy and slowly gave her a sense of more control over her life, enabling her to regain more independence.

As part of her therapy, Amy also made use of Neuro-Hope’s cognitive prosthetic word processor.

Therapy progressed, and Amy’s level of cognitive functioning substantially increased. Her independence grew to the point where it became clear that living in a group home would no longer be necessary.

In fact, the family began to contemplate whether Amy could eventually return to college and complete her degree. It was a long shot, but between Amy’s own persistence, her family’s support and the therapist’s skill, it was worth a try.

However, to regain admission, Amy would need to pass competency tests in five academic areas, requiring Amy to re-learn her prior coursework—a Herculean task.

Evolving therapy to support her new goals

This new goal required Amy’s therapy to change focus. Her speech therapist, whose practice included academic support for learning disabilities, led Neuro-Hope's development of academic support software for Amy, outlining the software features that would be initially needed, which included aural, visual, and tactile learning elements. The application was a concept-learning module, incorporating the technologies Amy was already using: a cognitive prosthetic word processor, a digital calendar, and Cell-Minder to provide schedule and structure.

Amy worked on relearning her college coursework with her therapist. Over the course of the next two years, she worked through the textbooks and corresponding workbooks, sometimes with her therapist or mother (a former teacher herself.) Increasingly, Amy was able to work independently.

The outcome: Amy returns to campus & graduates

After two years of effort, Amy successfully passed five competency tests, and gained readmission to her senior year of college. She moved back to campus, and with continued support from her speech therapist, Amy was able to complete her senior year and graduate within a single academic year.

Following graduation, Amy passed the national competency exam for her chosen profession. She accepted a job in the field and is employed in her field, doing the work she loves.

Continuity of therapy & focus on priority issues

Throughout Amy’s four years of therapy, the speech therapist was able to provide Amy with therapy along the outpatient continuum. Telehealth made it easy for Amy and her therapist to have sessions, even though Amy lived in three separate locations (and two different states) during her therapy. That continuity of care played a crucial role in achieving the successful outcome.

Uninterrupted by changes in Amy’s geographic location, the consistent therapy sessions enabled Amy’s therapist to acquire deep knowledge about her, including the subtleties of her cognitive functioning, her personal strengths, and the evolution of her goals. The two formed a close relationship—a frequent consequence of Neuro-Hope's Collaborative Rehabilitation Therapy approach.

It is typical for patients to move from one outpatient program to another, under the theory that different programs have different specializations. In practice, programs never finish all the issues that they hope to address, and the more difficult challenges are the ones that slip through the cracks.

When therapists need to address the entire continuum, as is the case with Neuro-Hope's approach, the critical issues become the priority and cannot be passed on to the next program, enabling the patient to achieve the maximum level of functioning. Amy is a good example – today she is employed in her chosen profession, rather than living her days out in a group home.