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Jun-10-2011 14:29printcomments

Gabrielle Giffords: Optimal Rehab Leads to Optimal Brain Recovery

Janet M. Cromer is a psychotherapist/healthcare writer.

Gabrielle Giffords
Gabrielle Giffords

(CLEARWATER, Florida) - While Congresswoman Gabrielle Giffords engages in intensive rehabilitation following the gunshot wound that left her with a traumatic brain injury (TBI), her husband, Mark Kelly, has trained for two high-stakes missions. Kelly succeeded brilliantly at the first-commanding the space shuttle Endeavor’s mission to the International Flight Station, then safely home.

His second mission will be navigating the critical role of husband and rehabilitation coach for months and years to come.

I know what it’s like to be thrown into the otherworldly zone of life after brain injury. My husband Alan suffered a massive heart attack and cardiac arrest on an airplane. After almost an hour of resuscitation, Alan’s heart started. Reviving his brain took much longer because prolonged lack of oxygen caused a severe anoxic brain injury.

In an instant, the Professor of Physics became a brain injury survivor fighting to regain his abilities to read, write, walk, talk, think, and remember.

At least 1.7 million people in the US sustain a traumatic brain injury (TBI) annually. An additional 795,000 people (like Alan) sustain an acquired brain injury from non-traumatic causes. More than 3.1 million adults and children live with a permanent disability due to brain injury.

After a month in the ICU, Alan began comprehensive in-patient treatment at Spaulding Rehabilitation Hospital. I was horrified by the team’s initial reports of Alan’s extensive cognitive deficits. Essentially, all he had left was an urgent determination to communicate, a heart-felt sense that I was his wife, and a fierce motivation to comprehend and participate in life again. Not a bad start.

Cognitive rehabilitation was inherent in every treatment. The Brain injury Association of America defines cognitive rehab as “a systematically applied set of medical and therapeutic services designed to improve cognitive functioning and participation in activities that may be affected by difficulties in one or more cognitive domains.”

That means restoring or compensating for the skills involved in thinking, learning, remembering, and communicating that we require to participate in relationships, work, and play.

Alan was desperate to learn to read and write. He started by tracing a pencil over the letters of the alphabet his speech-language pathologist had written, while softly chanting the sound of the letter.

Singing the children’s alphabet song together provided a soundtrack for our days. Four weeks into rehab, he beamed as he sang “A-B-C-D-E-F-G…” all the way through, without any mistakes. I have never been more proud of my husband.

Before long, Alan could walk thirty feet and dress himself with cues. Our insurer, like most, didn’t understand the importance of restoring the less visible brain functions that make us the executives of our own lives. We waged a constant battle to continue in-patient rehab.

When Alan was discharged after three months of superb treatment he was beginning to read first grade books. He spoke in complete sentences which included words he made up. He processed information slowly, but communication strategies helped.

However, he had not yet developed the capacity to problem solve a decision or manage his anger. He had no ability to keep himself safe in the world. Memory impairment made everything harder.

Once at home, we wove cognitive rehab into our “new normal” life by approaching learning from many angles. His goals and interests laid the foundation for our efforts. For his first goal, Alan chose feeding our dog Molly independently. After three weeks of practice with my four-step instruction card he aced the job.

Alan’s knowledge of science remained beyond reach. However, swaths of ancient history, Broadway musicals, and Shakespeare resurfaced. He relished reading about Odysseus in a children’s mythology book, then writing a report on his hero.

Music was a particular joy. He sang complicated lyrics from Gilbert and Sullivan’s Mikado even though he had trouble completing two spoken sentences fluently. We crooned Gershwin’s “Embraceable You” as we rebuilt our marriage.

Over several sessions with out-patient speech-language pathologists, Alan tenaciously grasped for the higher functions of deductive reasoning, problem solving, and abstract thinking. Even though I felt empowered by extensive training with Alan’s therapists, providing long-term rehab at home was sometimes a daunting responsibility.

Our constant integration of cognitive rehab paid off. Alan made progress in specific thinking and language skills for three years. He even became a teacher again by delivering motivational speeches to survivors, professionals, and the public. Alan considered teaching his gold standard of a meaningful life.

Gabrielle Giffords will continue to receive exemplary cognitive rehab. Every brain injury survivor requires and deserves that level of treatment. We must ensure that regulations voted in during implementation of the Affordable Care Act include access to a continuum of care, including cognitive rehabilitation, of the optimal duration for each person with a brain injury. Public, private, and military insurers must cover comprehensive rehabilitation in all benefits packages.

Millions of family caregivers provide years of rehabilitation at home to make their loved one whole again. They should be entitled to long-term access to training, support, coaching, and financial assistance.

Alan always advised survivors, “Never stop loving, learning, and striving.” It’s up to all of us to assure that the uniform policies and payments are in place to foster those goals for every survivor.

(Janet M. Cromer, a psychotherapist and healthcare writer, is the author of Professor Cromer Learns to Read: A Couple’s New Life after Brain Injury.)

1. Brain injury statistics: http://www.biausa.org/bia-media-center.htm

2. Definition of cognitive rehabilitation from Cognitive Rehabilitation: The Evidence, Funding and Case for Advocacy in Brain Injury, a Position Paper of the Brain Injury Association of America, November 2006, p 2.

3. Information about improving access to care within the Affordable care Act: http://www.biausa.org/_literature_81098/Access_to_Care_Fact_Sheet_2011




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