Aphasia Awareness Month Interview with Kenneth Heilman, M.D.

For a devastating language disorder that affects almost two million people in the US alone, about 85 percent of people in a national survey have never heard the term “aphasia.” More common than Parkinson’s disease, cerebral palsy, or muscular dystrophy, it does not discriminate according to age, race, or gender. With June being Aphasia Awareness Month, we asked Kenneth M. Heilman, M.D., to help us get the word out.

Heilman, who is an expert in language and speech disorders, was Chief of Medicine at NATO Hospital in Turkey during the Vietnam War and currently is a Distinguished Professor Emeritus of Neurology at the University of Florida (UF) and a staff neurologist at the Malcom Randall Veterans Affairs Medical Center. Heilman has also been a member of the Dana Alliance for Brain Initiatives since 2003.


Photo courtesy of Kenneth Heilman

Aphasia is more common than other well-known brain disorders, with an estimated 180,000 people predicted to develop it each year. Why do people know so little about it? Continue reading

Aphasia Awareness Month

shutterstock_94532341When a close friend of mine first started telling me about her mother’s sudden odd changes in behavior, my immediate thought was that they must be signs of Alzheimer’s. Hers seemed to be a gradual decline, one that began no more than two years ago, and as I saw her every now and then, I noticed more and more how she was withdrawing, depriving us of her warm, sociable disposition. Continue reading

What’s the Word?

As an editor, it’s disheartening when I try to suggest new wording only to find that I can’t think of the word I want to recommend. A thesaurus can be helpful, but often if I move on to something else or focus on things I associate with the word, it will come to me eventually.

My experience with the tip-of-the-tongue (TOT) phenomenon is a common one. As a 2008 bulletin from the Howard Hughes Medical Institute describes, this phenomenon occurs across languages and throughout life, although it becomes more common as we age. We can blame the phenomenon for the times we forget proper names or can only remember the first letter of a word or name.

Researchers posit that the prefrontal cortex (responsible for higher-order thinking and thought organization) and the anterior cingulate cortex (which plays a role in decision making) may be involved in the memory retrieval problem of TOT.

But, suggest researchers Bennett L. Schwartz and Janet Metcalfe in an article published last January, TOT may have a beneficial function, “alerting us to the possibility of remembering when retrieval apparently has failed.” Once you become aware of a problem, you can work to fix it, trying even harder to uncover the hidden word or name (or turning to that trusty thesaurus). The more time spent searching for a word, they suggest, the better we remember it in the future—retrieval can act as a learning tool. This leads the authors to recommend that children with dyslexia (for whom TOTs are more common than children without the disorder) should be encouraged to take the time to retrieve known words, rather than having adults provide them.

A more serious inability to remember words can come as a result of injury or dementia resulting in aphasia, a disorder impacting the ability to speak or understand speech. Anomia, a common symptom of aphasia, makes it difficult to impossible to recall words. As scientists continue to study aphasia recovery, we may begin to know more about the more common and benign TOTs.

–Johanna Goldberg

Book Review: One Hundred Names for Love by Diane Ackerman

One of these days, I’ll act on my notion of coaxing brain scientists to write for the lay reader by rounding up margin notes from brain books I’ve edited and writing about the brilliant and oh-no! things scientist-authors do in this enterprise. Part of that project will be discussing the reasons for the success of the still short but growing list of brain books that have blasted past the usual categories of popular science, neurological or psychological explanation, and scholarly works to seize the attention of a wide swath of readers and even appear on the major bestseller lists.

Oliver Sacks, of course, is the godfather of the genre. Among neuroscientists writing for the public (in declining order of the numbers of books they’ve written to make the leap), Antonio Damasio, V.S. Ramachandran, Michael Gazzaniga, Nancy Andreasen, and Eric Kandel are the most successful authors in the niche. Jill Bolte Taylor earned her ticket with a single book, and I believe that, other than Sacks’s books, hers may be the only scientist-written one that rivals in popular success the brain books by the tiny number of non-scientist authors whose works are well-regarded by scientists themselves.

The very best of the non-scientist authors is Diane Ackerman, who, in addition to her dozen books in different natural sciences, has published eight books of poetry and three children’s books. The best-known of her half-dozen brain books, until now, was A Natural History of the Senses. I have a feeling her new book, One Hundred Names for Love, about her husband’s stroke and its aftermath, will shoulder that one aside for the top spot.

I’ll say immediately, Diane Ackerman is a friend to the work of the Dana Foundation and Dana Alliance for Brain Initiatives to help people understand and care about the brain. She has mentioned Dana publications and the Foundation in her writing, as she does in her new book, and she and I have been in touch from time to time since 2002, when I commissioned (at arm’s length, through her agent) a gorgeous foreword that she wrote for our book, The Bard on the Brain.

This would be the stuff of conflict of interest if One Hundred Names for Love fell short in any important way, because it would hurt to criticize the work of someone we like, appreciate, and respect. The potential was there, because even the best writers can go wrong in a brain-illness memoir. When “self” collides with “who am I?” or “who is this?” the situation is so fraught that anyone’s power of expression can flee to the sanctuaries of melodrama, doom-mongering, sticky spiritual awakenings, self-pity or its flip side, self-congratulation, and, particularly irritating, the illusion that having experienced the brain in trouble, either personally or at close hand, the writer knows all about it.

Luckily, this book sails right past all these traps. The author has no intention of trying to make us believe that she understands everything that happened and we’ll all profit from finding out how she handled it. The wonderful result is that it is impossible not to profit from reading Ackerman’s seemingly effortless blending of the many levels touched by her husband’s stroke and their experiences in its wake.  And it is impossible not to be drawn into reflection after reading it—reflection about the influence of individuals’ personal qualities, the tensile strength of real love, the mysterious and surprising capacities of the brain, and, yes, even the meaning of life.

Books dealing with the brain are presumed to be serious and scientific, so it sounds oxymoronic to say One Hundred Names for Love is a love story, but it is without question. Sorting out the belles of the lettres in this love story is not what I want to do here, but you really should have a look at the wonderful review by Abraham Verghese, in The New York Times Book Review. Verghese explains why the love story is the glue—and the glory—of the book.

I will only add that one of book’s lessons is that love can blind you in useful ways: If a stroke takes the identity of someone you love, well, you put one frightened foot before the other, and go out and find the pieces that matter. Who knows? You might just meet him doing the same thing and wind up finding it together. In a most unexpected and unforgettable way, this is where One Hundred Names for Love works like a novel.

Ackerman’s husband, Paul West, is the author of more than 40 literary novels, and his stroke in 2006 was massive. It left him with what’s medically termed “global aphasia,” which translates to the loss of all language ability. In the aftermath, he could not understand words spoken to him or summon words to speak them, and could not remember, read, or write them. The only result of trying to speak was a single syllable, “mem,” from which Ackerman, his therapists, and his doctors had to construe what he was trying to say. She makes terrific use of this awful stuck syllable in the book.

Even though Ackerman makes it clear in the early pages that her husband recovered his ability to write, when you read her description of the stroke, it seems almost unimaginable. Not only did it rob him of language, but being a left-brain stroke, it also impaired his right visual field, gnarled his right (writing) hand, impeded his ability to walk, and gutted his procedural memory. He had to learn to do everything all over again, including brushing his teeth and dressing himself. (Late in the book, a non-stroke medical problem and a brain scan are indicated; the emergency room doctor looking at the old stroke damage assumes Paul is in a vegetative state. Diane tells him with pride that, no, he’s published four novels since the stroke.) Knowing how long the odds are in such a case, watching them work together to do the ordinary and their own extraordinary rehabilitation is as suspenseful as if you didn’t know the result.

Another success in the book is Ackerman’s portrait of a man in the worst crisis of his life. The fighter, the wordsmith, the man with a taste for puns and play, the unique individual emerges steadily through the pages; the book, you realize, is not about her, but equally about him, and them.

One Hundred Names for Love is also art—something that snatches you from the familiar and enlarges you by putting you unexpectedly somewhere beyond yourself. In a way, arts other than writing have it easier. Music, painting, dance, theater—they all shoot straight for the emotions; it’s their stock in trade. But readers give a writer a steeper hill to climb. All of us, too, exist consciously in a world of words (whether we think about it or not), and we resist challenges to our comfortable vocabularies and frames of reference. If we like bodice-ripping romance or murder or thrillers, we’d rather just stay there.

Ackerman’s achievement with this book as art is how she exploits the opening we give her by choosing to read—just this once—a book about someone’s stroke. Into that opening she pours an intoxicating stream of intelligence, imagery, brain facts, insight, and words, words, and more words. She uses words as dancers use movement, as artists use paint, and as musicians use melody. She is not trying to order our attention or instruct our intellect and thereby succeeds in doing both and rewards  our choice to engage in an experience—stroke—that we rightly doubt we could handle unexpectedly in our own brain or that of someone we love.

–Jane Nevins

Using words as both diagnosis and cure

Just as movement needs to be relearned in some cases of stroke, other people need to find a way to recover speech and language.

Researchers from New York Presbyterian Hospital/Columbia University Medical Center have developed a metric to predict stroke recovery of language based on extent of early impairment. The researchers, led by Ronald Lazar, Ph.D.,
tested patients’ language function one to three days after the stroke,
and again three months later. Using their test scores immediately
following stroke, the researchers could roughly predict how the patient
would score after 90 days. Most patients with mild to moderate aphasia,
or language impairment, who received language therapy were about 70
percent improved when they were tested for the second time.

In the second, not-yet-published study, Swathi Kiran, Ph.D., of Boston University, assessed language recovery of bilingual stroke patients.
She determined that when patients practiced the language in which they
were less fluent, their improvement was greater in both languages than
when they practiced the language with which they were more familiar. If
patients go digging for information, connections in the brain are

The Dana Guide to Brain Health article “Trouble with Speech and Language” offers more information on language and brain function. You can also read a more general essay on “Speech, Language, and Reading.”

–Johanna Goldberg

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