What's aphasia? Many stroke survivors know

This month (June) is Aphasia Awareness Month - and if you're like me, you weren't aware of aphasia until it hit close to home. Or maybe you're still unfamiliar.

So what is aphasia?

The National Aphasia Association defines it this way:

Aphasia is an acquired communication disorder that impairs a person's ability to process language, but does not affect intelligence. Aphasia impairs the ability to speak and understand others, and most people with aphasia experience difficulty reading and writing.
... The most common cause of aphasia is stroke (about 25-40 percent of stroke survivors acquire aphasia). It can also result from head injury, brain tumor or other neurological causes.
... Aphasia affects about 1 million Americans - or 1 in 250 people - and is more common than Parkinson's Disease, cerebral palsy or muscular dystrophy. More than 100,000 Americans acquire the disorder each year. However, most people have never heard of it.

I was hit by aphasia with my stroke, and through speech therapy, was able to regain my speaking, reading and writing ability. I suspect most people in similar circumstances wonder, from time to time, about a forgotten or misused word or a need to re-read a sentence: Would I have made that mistake if the stroke never happened? Another one of those unanswerable questions.

So if you know a stroke survivor, you might well know someone impaired - temporarily or permanently - with aphasia. Visit the National Aphasia Association Web site and review the resources. And share awareness of aphasia with others.

Stroke, aphasia have no political convictions

I've tried to avoid politics on this blog. A stroke doesn't care about your political convictions - strokes kill and disable too many people regardless of their political stripes.

Aphasia, too, is a too-common condition with stroke survivors. It affects speech. In my case, I stopped speaking for a few hours, struggled with speaking for weeks and still - at least in my own mind - must concentrate harder to speak. Fortunately, aphasia doesn't affect intelligence. Click here to read more about aphasia.

But politics and aphasia collided recently when a spokesperson from the Donald Trump presidential campaign diagnosed opponent Hillary Clinton with "dysphasia," another word for aphasia.

The National Aphasia Association responded:

Don't confuse 'Game of Thrones' character with reality

I'm not a fan of the HBO series "Game of Thrones," but apparently, I'm in a distinct minority.

So I was surprised when I started reading that one character supposedly has aphasia, a language condition that affected me during and after my stroke, and many, many others. Maybe even you.

Now, aphasia does NOT diminish one's intelligence. You've got all those thoughts in there, and aphasia is often a barrier to get those thoughts out through speech.

So I did a little research, and instead of this being an instance to educate the public about aphasia, the talk that the character Hodor has aphasia - which is incorrect - has bolstered the mistaken impression that aphasia effects intelligence. Again, it does not.

Here's a good rundown on why this idea is wrong, highlighting that Hodor does not have aphasia:

What the heck is aphasia?

If you've read this blog much, you'll know. But most people don't know much about aphasia, a language disorder that affects many stroke patients.

June is Aphasia Awareness Month, and my Google alerts found an article with a great point: People with aphasia can struggle to find the right words, use the wrong words, or speak haltingly, or speak very little.

All that being said - and I've been through all of those things myself - aphasia does not remove your intellect. People with aphasia are, by and large, just as intelligent as always. The problem is not intelligent. The problem is language.

I found this article on the National Aphasia Association website - sorry, but the PDF version is the only one I could find. A few sentences:

A National Aphasia Association survey found that because of their difficulty in communicating, over 70% of people with aphasia report that people avoided contact with them and 90 percent felt isolated, left out, ignored and lonely. This isolation, coupled with the fact that intellect remains intact, makes depression another serious result of aphasia.

Try to imagine what your life would be like if you suddenly were not able to communicate any longer. Every aspect of your life would be forever changed. Your role and responsibilities in your family would change. Your relationships with friends and colleagues would change. Completing everyday tasks like making a phone call, driving, shopping, dining out or getting cash at the bank, would become challenging or perhaps impossible without assistance, even though your intellect would remain intact.

Most of my signs of aphasia were effectively treated by speech therapy (an often unheralded but important line of work). It still can emerge during a time of stress or fatigue, which still can be frustrating.

But do know that someone you know with aphasia is still there - intellect and all.

'Listen and hear my voice'

Listen and hear my voice; pay attention and hear what I say.

-Isaiah 28:23

You can find several postings on this blog related to aphasia - a term that is rarely understood. That is, until it happens to you or to someone you love. It's common among stroke survivors.

I missed the fact that June was National Aphasia Awareness Month until one of my trusty Google alerts send me a posting, including the Scripture above, from a Lutheran church in Pennsylvania. It did some basic education about aphasia, quoting the National Aphasia Association:

Aphasia is an acquired communication disorder that impairs a person’s ability to process language, but does not affect intelligence. Aphasia impairs the ability to speak and understand others, and most people with aphasia experience difficulty reading and writing.

The most common cause of aphasia is stroke (about 25-40% of stroke survivors acquire aphasia). It can also result from head injury, brain tumor or other neurological causes. Aphasia affects about one million Americans or 1 in 250 people. While aphasia is most common among older people, it can occur in people of all ages.

(Image from WikiMedia Commons)

Aphasia basics

Traditionally, in the United States, June is, among other things, Aphasia Awareness Month.

And those involved have a lot of work to do to generate awareness. I'd be willing to guess - maybe even a small wager - that most people have no idea what aphasia is.

As someone whose stroke floored me - temporarily - with aphasia, I offer this basic information for you to pass along to people you know:

Aphasia is a disorder caused by damage to the parts of the brain that control language. It can make it hard for you to read, write and say what you mean to say. It is most common in adults who have had a stroke. Brain tumors, infections, injuries and dementia can also cause it. The type of problem you have and how bad it is depends on which part of your brain is damaged and how much damage there is.

There are four main types:

• Expressive aphasia - you know what you want to say, but you have trouble saying or writing what you mean

• Receptive aphasia - you hear the voice or see the print, but you can't make sense of the words

• Anomic aphasia - you have trouble using the correct word for objects, places or events

• Global aphasia - you can't speak, understand speech, read or write

Some people recover from aphasia without treatment. Most, however, need language therapy as soon as possible.

Read the entire article linked above. Lots of other links for good resources about aphasia.

Myth No. 1: Aphasia and intelligence

In the next several weeks, look for occasional postings concerning myths about strokes, symptoms and survivors.

One is near and dear to my heart - aphasia.

When I had my stroke back in '98, I struggled to relearn how to speak, read and write (some people might think I'm still learning). But one very annoying aspect of this: people assumed that my intelligence was lowered because I had trouble with communication.

Aphasia hits young people differently than seniors

Stories about aphasia speak to me.

And stories about young people - I was just 39 - who have had a stroke also interests me. Further - and play the audio at the bottom of this posting - music and aphasia intrigue me.

Now, those three items have come together in a story about as strokes become more common in younger population, intense programs to reteach speech grow:

“We are seeing more younger people with aphasia attending our program,” said Leora Cherney, the director of the Center for Aphasia Research and Treatment at the Rehabilitation Institute of Chicago.

How I learned about aphasia and intelligence - the hard way

The note on the right was written by my wife back in 1998. I was trying to say "Jonesboro," the last word on the list. Instead, I said the top three words on the list.

Nonsense, in other words. And maddening, in that I knew what I was trying to say but something was in the way. My intelligence was intact - just couldn't get out.

I'd never heard of aphasia before I had my stroke. Now, you do see it in the news from time to time, but it's still frequently misunderstood.

Here's a good rundown on how aphasia is a little-known, yet growing, health problem:

At least 25 percent of the estimated 795,000 Americans who will have a stroke this year will acquire aphasia, according to Williamson's nonprofit organization. Symptoms can vary widely. While many have trouble speaking, others also struggle to process words being spoken to them, to read and to write.

Finding the right words - the challenge of aphasia

June is Aphasia Awareness Month. And until 19 years ago, I had no idea what the word meant.

But I know now. It's a language disorder, leaving some people unable to speak. Others can speak but struggle to find the right words.

That was me. I still have the list of words I said to my wife after my 1998 stroke: towrith, rice, torithe. And I was trying to say the name of a city I'd visited not long before -- Jonesboro. Through time and with the help of a speech therapist, family and friends, I'm almost 100 percent back.

I can still remember frequently swapping pronouns -- referring to a male as "she" or a female as "he," a common occurrence. Or leaving out small words. Or using the wrong tense -- such as saying "worked" instead of "working."

'Aphasia Choir' uses music for help in recovery

I've posted before about my own story about stroke recovery, aphasia and singing. Here's a recent story about an "Aphasia Choir" in Vermont:

How is it that survivors of stroke and certain brain injury are often unable to speak but they still can sing? The answer lies in the brain's physiology. By tapping into the undamaged right hemisphere, the stroke survivor can recall familiar melodies and express them through song. Enter, the Aphasia Choir.

Word of the day: aphasia

The truth is you don't hear the word "aphasia" in the newspaper or in the news or in everyday conversation. This is unfortunate.

-Aphasia Support Group

Sadly, this Aphasia Support Group blog has it just right. People generally don't know what it means or how it can - in an instant - wreak havoc for a stroke survivor.

I became intimately familiar with aphasia in 1998, when a stroke nearly killed me. I could hardly read for a time. Writing coherently was very, very difficulty. I struggled mightily to find the right words and put them in the right order.

Now, aphasia is a more subtle part of my life, but remains, especially with speech, and especially when I'm tired, stressed or distracted.

My recovery was, in great part, to a speech therapy who patiently worked with me. These professionals can make a world of difference in many lives. If you or someone you know has struggled - or still struggles - with post-stroke aphasia, help make the rest of the world become more aware.

Two great things in one story

I"m a fan of the BBC television show Doctor Who - and a fan of efforts to help people hit by a condition called aphasia, which affects the speech of many stroke patients.

So I had to include a link to a story about a recurring Doctor Who character - the Dalek - and its use in an event to raise money to serve aphasia sufferers:

A Dalek was the menacing attraction as the Ewell Village Fair became the first fund-raising event this year for the chosen charities of the borough's new mayor.

The fair, held at Ewell Castle School, was in aid of Dyscover, the Samaritans and Meru, and Councillor Clive Smitheram, mayor of Epsom & Ewell, has plenty more in the pipeline. ...

Based in Walton-on-the-Hill, Dyscover provides specially designed speech and language programmes for those suffering with a brain condition called aphasia, helping them to adjust on a long-term basis.

A quick quote with more details about aphasia:

Aphasia is an impairment of language which occurs when someone suffers injury to the language areas of the brain. Aphasia can affect language in many ways including its production (ability to speak), and its comprehension (ability to understand others when they speak), as well as other related abilities such as reading and writing. Over 20% of all people who suffer a stroke develop some form of aphasia.

(Photo from Wikimedia Commons)

New treatments for those going through aphasia

Catching up on news about aphasia, which I went through after my stroke some years ago. Check out the story on how new treatments may help restore speech lost to aphasia:

But technology, Riedel said, has introduced new language-improvement techniques into the mix over the last few years that are both exciting and fun. Several apps available for iPhone or iPad involve synthetic speech that helps engage those with aphasia in yet another realm of communication.

"Our patients have much more access to different kinds of programs that are computer-based," she said. "There's always something new around the corner."

What remains a constant concern, however, is the misunderstanding many people have of those with language difficulties and how to treat them, Ganzfried and Riedel agreed.

"Many people with aphasia will become socially isolated because of their communication difficulties, which can lead to depression," Ganzfried said. "There are also many misconceptions about aphasia, including that the person is mentally unstable or under the influence of drugs or alcohol. It's also extremely frustrating. Imagine knowing what you want to say in your head but you can't get the words out."

This problem can indeed by frustrating. It doesn't affect your level of intelligence - just getting those thoughts out in the form of language.

Research shows promise for aphasia patients

Aphasia often strikes those of us who have a stroke. It struck me, and I know that recovery can be frustrating. Some news about a new brain stimulation technique that shows promise for people with aphasia:

Words that once came naturally for even simple objects before the stroke—such as a chair, a pen, or an apple—are suddenly difficult if not impossible to retrieve. Although some people may recover their language skills in time, for others, the effects can be chronically debilitating.

Such differences in patient outcomes have scientists from the University of South Carolina delving deeper into this language disorder—called aphasia—which results when language centers of the brain are damaged by stroke, head injury, or other causes. In new NIDCD-funded research, they’ve demonstrated not only how important the location of the brain damage is in predicting how well a person will respond to aphasia therapy, they are also investigating a new method for stimulating brain-damaged regions in people with aphasia, in hopes of increasing brain plasticity and perhaps improving word recall.

Compilation of aphasia info...

My Google alerts sent me a link about a topic that is close to me: aphasia.

I struggled with language - even still, to a degree - after my 1998 stroke. A link listing 10 things to know about aphasia:

If a stroke has left you with lingering language problems, called aphasia, you might recover some limited abilities on your own. However, you'll probably need speech-language therapy for the best possible improvement. Fortunately, experts know more today than ever before about treating aphasia effectively. Here are 10 essential facts about the most up-to-date treatment strategies.

I watched, once again, Dick Clark struggle with aphasia as 2012 began over last weekend. More power to him!

Emoji app - can it help aphasia patients?

Back in the pre-emoji era, one of the tools I used to get my language skills back was an educational toy called GeoSafari. The company still makes more modern versions of this toy.

Fast forward almost 19 years, and here's some new technology to help people with aphasia, a common result of a stroke. Read how Samsung’s new app uses emojis to help people with language disorders communicate:

Created by Samsung Electronics Italia (the company’s Italian subsidiary) and speech therapist Francesca Polini, Wemogee replaces text phrases with emoji combinations and can be used as a messaging app or in face-to-face interactions. It supports English and Italian and will be available for Android on April 28, with an iOS version slated for future release.

Aphasia does NOT decrease intelligence

I stumbled across a pretty generic article about aphasia the other day, but I could see how these articles might help. Most people know very little about aphasia, which often affect how stroke survivors can communicate.

I'll tell you my favorite line after this excerpt about there is help for asphasia:

Aphasia occurs when a stroke or other brain injury damage and disconnect areas of the brain responsible for language, which includes not only speech, but also the ability to comprehend, read, write, and even gesture.

Approximately one million people in the United States have aphasia, and more than 200,000 Americans are diagnosed each year.

Bumper sticker image
from the Veterans Administration

Aphasia is sometimes mistaken for intellectual impairment, and so they are often ignored because they may seem not to understand, or "shouted at" as if they have a hearing loss.

It's the very last line. One of the most aggravating part of my stroke recovery was that it seemed - just from my own point of view - that some people assumed that because I had difficulty in speaking, my intelligence was affected.

It was not.

So, I hope that at least one person will read that article and learn that fact!

Aphasia: A struggle for words

U.S. Rep. Gabrielle Giffords made news not long ago by sitting through an interview about her lengthy struggle with brain injury after a shooting that nearly killed her. She clearly struggles with words - a problem called aphasia.

Many stroke survivors struggle with aphasia, too. While the cause of Giffords' aphasia is different than mine, I certainly feel for her as she faces this communication challenge. As a newspaper reporter at the time, I was concerned that my language problems would endanger my livelihood. I'm sure that as a public official who runs for office every two years, she has some of the same concerns. Words are powerful tools for political candidates.


Her first television interview occurred not long ago on ABC News.

Aphasia is a silent-like problem - people who have it have trouble talking about it. I know that at one time, I had trouble getting words out. But the word "aphasia" is a word that needs to become more known.

Aphasia treatment can be costly

Aphasia - language problems that can often be the result of a stroke - can be costly. But I'm grateful that despite aphasia after my own stroke, I was allowed to have speech therapy to bring back my language abilities to stay a productive member of society.

So when you read about how post-stroke speech problems inflate cost of treatment, remember that (1) preventing strokes can save lives and health care dollars and (2) the cost of speech therapy is small compared to the cost of doing nothing.

Help in regaining lost speech drive up medical bills, the researchers found. Medicare payments averaged over $20,700 for those with aphasia compared to about $18,700 for those without these language difficulties, an 8.5 percent difference.

The researchers also found that patients with aphasia were older and suffered more severe strokes, stayed in health care facilities 6.5 percent longer than those without impaired language, and had higher rates of illness and death.

The study appears Feb. 16 in the journal Stroke.

Each year in the United States, strokes leave about 100,000 people with language impairment.

"These findings are important because dramatic changes are occurring in health care reimbursement, specifically imposed caps on Medicare reimbursement for outpatient speech language pathology and physical therapy," study lead author Charles Ellis Jr., an associate professor of health sciences and research at the Medical University of South Carolina in Charleston, said in a journal news release.