Imagine. You’re in a foreign country, with no knowledge of its written language or spoken tongue. You’re lost; you’re sick; you’re desperate to be understood. You grasp for words, for sounds, only to have them fall flat to the ground. Kindhearted, these countrymen are, desperate even, to help you. Nonetheless, they cannot decipher your pleas.

Metaphorically, this is the plight of people with aphasia—the theft of speech or communication altogether that can follow a stroke or trauma to the brain. There are about one million people with aphasia in the United States, as many as have Parkinson’s Disease. Most people have never heard the word, much less understand its full meaning.

Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. The word comes from the ancient Greek aphatos, meaning without speech. Despite its name, people who suffer from aphasia are not necessarily speechless, but all people with aphasia experience some degree of difficulty talking and comprehending spoken language. Aphasia is most often the result of a stroke, but it can be caused by head trauma, brain tumor or other neurological illness.

There are many varieties and unique features of different types of aphasia. They correspond, by and large, to the location of the brain injury. Some aphasics, at least for a time, lose all meaningful speech. Others who are able to articulate some words, speak hesitantly or talk fluently but with non-words. Some can write or even sing, but not read. Most commonly, depending on what part of the brain and, in particular, how the language centers are damaged, multiple aspects of communication are impaired. The Broca’s area of the brain has to do with the ability to create speech, while the Wernicke’s area is the part that gives us the ability to understand speech. Two types of aphasia are named after these areas.

A ‘world between worlds’

Our understanding of aphasia is both personal and professional. When Blair was undergoing emergency bypass surgery on September 11, 2004, he suffered a stroke that wiped out his speech centers. Initially, he suffered Global aphasia, the most severe form. He could say only two words: “Rita” and “Tashi” (our dog). For months, he could neither read nor write.

Author and scientist Jill Bolte Taylor, PhD, is a neuroanatomist who suffered a massive stroke at the age of 37 when a blood vessel exploded in the left side of her brain. The hemorrhage covered both the Broca and Wernicke areas of her brain, as well as the motor, sensory and orientation association cortex areas. In her book, My Stroke of Insight: A Brain Scientist’s Personal Journey, she described her personal experience with the disease. “I now existed in a world between worlds. I could no longer relate to people outside of me, and my life had not been extinguished. I was not only an oddity to those around me but on the inside, I was an oddity to myself.

“I was shocked, however, when I did realize that I could not speak intelligibly. Even though I could hear myself speak clearly within my mind—This is Jill, I need help! —the sounds coming out of my throat did not match the words in my brain. I was disturbed to comprehend that my left hemisphere was even more disabled than I had realized. Although my left hemisphere could not decipher the meaning of the words he [a colleague/friend on the phone] spoke, my right hemisphere interpreted the soft tones in his voice to mean that he would get me help.” (p. 55)

So, what can be done for people with aphasia? Obviously, Taylor recovered. She wrote the extraordinary book describing her experience and healing, appeared on Oprah, had an interview on TED (Technology, Entertainment, Design annual conference) that has been viewed by millions on the Internet, and has been featured on PBS’s The Infinite Mind. But the healing journey was slow (12 years from the stroke until she wrote the book) and hard work.

In her book, Taylor says, “It was as if I had an infant brain again and had to learn virtually everything from scratch. I was back to the basics. How to walk. How to talk. How to read. How to write.” (p. 93)

How hard the work really was is clear in this description:

“...I don’t know if those cells in my brain had died or what, but I had no recollection that reading was something I had ever done before, and I thought the concept was ridiculous. Reading was such an abstract idea that I couldn’t believe anyone had ever thought of it, much less put forth the effort to figure out how to do it...First, I had to understand that every squiggle had a name, and that every squiggle had an associated sound. Then, combinations of squiggles – er – letters, fit together to represent special combinations of sounds (sh, th, sq, etc).”

Chronic learning

Lynn M. Maher, PhD, professor and chair of the Department of Communication Sciences and Disorders at the University of Houston, and a researcher at the Texas Medical Center, along with her colleagues at the Michael E. DeBakey VA Medical Center and The University of Texas Medical School at Houston, have focused on developing rehabilitation strategies to maximize recovery of speech and language abilities, and on improving our understanding of the neural underpinnings of that recovery. Maher is passionate that people know more about what can be done for people with the disability.

“While some stroke survivors experience good recovery from the challenges of aphasia, many others have difficulties that persist,” Maher explains. “Until relatively recently, there has been an attitude of pessimism concerning rehabilitation of chronic aphasia. However, a better understanding of the adult brain and its potential for change has generated new optimism for individuals with chronic aphasia (individuals with aphasia that persists for six months or longer).”

Maher says that even with chronic aphasia, patients can continue to improve in their speech and language function well beyond what has been considered “the optimal period of recovery.” Repetition seems to be key.

Maher says, “Research suggests that many of the principles of use-dependent learning—knowledge and skill acquisition from active experience—may have important implications for rehabilitation as well as for new learning. The importance of intensely repeated, targeted practice of relevant behaviors has been shown to result in positive improvement in some cases. In simple terms, this is the ‘use it or lose it’ idea.”

“There is still much to learn about how intense and how frequent the practice should be, as well as the best types of practice to use in aphasia rehabilitation,” Maher says. “However, it seems that for individuals with chronic aphasia, if they don’t continue to work on improving their speech, they are not likely to improve. About half of the participants with chronic aphasia in our studies showed a significant increase in their speech production, particularly for the types of phrases and sentences practiced during the therapy. We still have a long way to go, but there is good reason to be optimistic about the rehabilitation of people with aphasia.”

A need to come ‘to gather’

The National Aphasia Association, which was founded in 1987, is working to overcome the pessimism Maher referred to. Their mission is “to reconnect people with aphasia into the community by educating the public, promoting the development and use of community-based resources, and advocating on behalf of those who are left, literally, without a voice.” Even in large cities like Houston, there is no aphasia center or even support group where people with aphasia can socialize, practice talking, writing, play games or simply find support from those who, with or without words, would understand.

Thomas Cole, PhD, director of the John P. McGovern, M.D., Center for Health, Humanities and the Human Spirit at the UT Medical School was recently the keynote speaker at the NAA “Speaking Out” Conference. There he showed an award-winning documentary, Surviving Stroke: The Journey Together, which he co-produced with Sharon K. Ostwald, PhD, professor at the UT School of Nursing Center on Aging.

Cole reflected, “It is so difficult for people who are not intimately affected by stroke or aphasia to grasp the levels of life that are so completely disrupted. The documentary gives viewers an opportunity to witness the struggles of the stroke survivors, and their families and caregivers. I am struck with how moved viewers were to see a film which articulated their experiences, the highs and lows and the turmoil that is almost impossible to convey.”

Four years after Blair’s stroke, with much determination and hard work, he now serves as an Emeritus Professor at the UT School of Public Health and as a patient advocate volunteer at UT M. D. Anderson Cancer Center. His current nighttime reading is The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science by Norman Doidge, MD.

But of that period when he could no longer read, teach or communicate with his graduate students, he says, “I was bereft.” He has taken to heart Taylor’s list of “Forty Things I Needed the Most” when she was recovering from aphasia and her stroke, particularly the second request on her list: “Come close, speak slowly, and enunciate clearly.”

Blair has joined the board of the National Aphasia Association, with the goal of bringing hope and support to people with aphasia and their families who are still finding the words.

To learn more about what the National Aphasia Association is doing on behalf of people with aphasia, contact 800-922-4622 or visit www.aphasia.org

Last Updated: 10-01-2008

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