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."

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:

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.

How would you cope with saying just two words?

I feel for this man - a stroke takes away most of his speech ability and leaves him with physical issues.

It's hugely frustrating when you can understand what is said, but you respond only with difficulty. I struggled after mine, and the man in the story below is having a far worse time in that sense. But as mentioned here more than once, aphasia doesn't decrease intelligence.

Follow this link to read about the man who can only say yes and no:

It's not strictly true that Graham can only say "yes" and "no". He can say "and", "no" and "mmm", which means yes, and he also makes an "urr" sound. When he says "and urr…" it means he has something else to say and wants you guess what it is. ...

Singing for stroke patients - aphasia therapy

I've previously told my story about how singing seemed to help in my recovery from aphasia, an effect of my 1998 stroke.

Now, here's another story of how singing does stroke patients good:

Photo from Scott W. Vincent via Flickr

In a hospital atrium at Mount Sinai Beth Israel this week, a choir gave its first public performance. Wearing light-up necklaces and accompanied by drums and guitar, the performers rang bells and sang such holiday classics as “Silver Bells” and “Joy to the World,” occasionally breaking out in harmony.

Language skills and aphasia recovery - connected?

Should have taken those French classes in high school.

Turns out that for stroke patients suffering from aphasia, a language problem that affects thousands a year, bilingual brains sustain less stroke damage:

Compared to patients who spoke only one language, bilingual stroke patients were more than twice as likely to have normal cognition following their stroke and they also performed better on tests measuring post-stroke attention and function.

But the two groups had similar frequencies of aphasia, at 11.8% among monolinguals and 10.5% among bilinguals (P=0.354), which might be explained by a higher level of cognitive control in patients speaking two or more languages, Suvarna Alladi, DM, of Nizam's Institute of Medical Sciences in Hyderabad, India, and colleagues wrote online in Stroke.

Assigning homework for aphasia recovery patients

As you might have seen before, I used some technology myself in recovering from aphasia - a borrowed child's toy called GeoSafari. It was a teaching toy, and I was able to use it as a language-building tool.

Fast-forward 17 years, and we're more sophisticated now - snazzier video games, education toys, tablets - offering even more possibilities for aphasia recovery.

Plus, it gives a chance to study this on your own timetable. Check out the recent story how self-delivered speech therapy is feasible for aphasia patients:

Aphasia frustration - maybe spread-out therapy could help with recovery

It took a long time for my language skills to come back adequately - at least, under my definition of "adequately." One thing that persists over the last 17 years, though, is that when I am tired or stressed, speaking becomes harder.

So, this study makes a certain amount of sense to me - work too hard, you'll tire out. And initially, my stroke left me easily tired. This study looked at the time involved in speech therapy and recovering speech skills and found that aphasia recovery better when therapy is spread out:

Singing for stroke survivors

Back years ago, I felt it one Sunday morning.

Photo by lungstruck via Flickr

I'm a longtime, hymnal-using United Methodist. So one Sunday morning several months after my stroke, during a worship service, I sang along with everyone else, standing and holding a hymnal.

And suddenly, I felt like my language skills had gained a notch. This wasn't the first time I felt that way, but it was the first time while singing.

Now, here's a more recent story from across the pond on how how stroke survivors can sing:

One Voice was was set up in 2008 by Lorna Bickley and Katy Bennett as a community choir for people who had suffered strokes. Singing helps recovery of movement, memory, breathing, speaking - and confidence.

The phenomenon was first documented in Sweden in the early 18th Century when a young man who couldn't speak due to brain damage amazed the congregation at his local church by loudly singing along to hymns.

The American Stroke Association reported "the acquired language disorder now called aphasia became a subject of clinical study and a target for rehabilitation beginning in the mid-1880s".

"Since that time, every clinician working with aphasia has seen individuals who can produce words only when singing."

'... He heard my voice ...'

In my distress I called to the Lord;

    I cried to my God for help.

From his temple he heard my voice;

    my cry came before him, into his ears.

-Psalm 18:6

Could you talk during and after your stroke? I couldn't that day. To this day, I feel that my thoughts are sometimes bottled up while I try to get them out. Writing is much easier for talking. The delete key is my friend.

It especially comes through during times of stress, when I'm tired, when I'm not familiar with the topic, or when I'm given little time to think about what I'm supposed to say.

The words in this passage gives me some comfort. God hears your voice. In times of stress. When you're tired. Any circumstances. And if your voice has been silenced or stifled by a stroke, God still hears you perfectly, even if you are in a silent struggle.

Distress? Call for God. He stands ready to hear your voice - even if impaired of silent. Your cry comes before him loud and clear.

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!

Orange Popsicles and stroke awareness

This summer, when the weather gets hot, I think I'll have an orange Popsicle.

I ran across this quirky story about a stroke survivor whose one of her early phrases in recovering speech was "orange Popsicle."

You can also check out the video below on how a couple sends out a hopeful message to stroke survivors, one Popsicle at a time:

But with her new husband, Jonny, by her side, she began to beat the odds. First, she began moving her pinky finger and eventually began trying to talk again.

“She said, ‘I love you. Orange Popsicle,’” Jonny remembered. “And she kept saying that, ‘Orange Popsicle, orange Popsicle,’ all through rehab, ‘I want an orange Popsicle.’”

Amy’s Popsicle craving was a silver lining in an otherwise very dark time. It was a symbol of her progress and is now one of support.

The couple launched National Orange Popsicle Week a few years ago to raise money and awareness for other young stroke survivors and their families. They want people to know strokes can affect anyone, young and old.

Stroke survivors need compassion

Clearly, many people are unfamiliar with aphasia, which, at the extreme, might leave a stroke patient unable to speak. I lost the ability to speak for a while during and after my stroke. I regained that ability, but not everyone does.

So I really feel for this stroke survivor who was denied flight out of LAX:

Sherry Wright, of Canyon Country, is still upset about the way she and her disabled sister, Heidi Wright, were treated by a Transportation Security Administration official at LAX.

Heidi, 58, suffered a stroke 10 years ago. She is wheelchair-bound and unable to speak.

"He just wanted me to make my sister talk, and I couldn't believe it. I was like, 'Wow, we're going to make a miracle right now,'" said Wright."

A miracle. Instead of a government employee conducting a miracle, a little compassion and kindness would have worked.

App might help with aphasia

My speech stopped then garbled on the day I had my stroke. It took me quite some time to get back close to normal,  thanks to speech therapists, family and friends.

Now, there's something that might help supplement speech therapy - a new app that puts speech therapy in patients' pockets:

Patients can use the app to practice matching pictures and associated words, according to Dr. Stephen Hughes, who helped build the app.

“So we’re looking at the kinds of things that they’re doing already with paper and pencil and saying, ‘Can we use the technology to help them manage that experience better?’” Hughes said.

The Name That! app isn’t meant to take the place of traditional treatment. Rather, the creators hope that it will supplement what speech therapists already do in sessions. Hughes and Burda are currently working on expanding the app’s simplistic design in order to fit more needs of aphasia patients.

I used some educational "toys" myself - really more suited to children learning English for the first time. But an app specifically tailored to people struggling with aphasia would be better. It's important to note that aphasia does not affect intelligence. The thoughts are there - aphasia causes difficulty in getting thoughts out.

Both sides of brain involved in speech, study finds

I feel for people who have speech problems after a stroke. It happened to me in 1998. For a few hours, I could not speak or read at all. When I finally could speak, the words made no sense.

My wife asked me to say "Jonesboro," the name of an Arkansas city I'd visited not long before. I came out with: towrith, rice, torithe (her own spellings). I had apparently confused two separate ideas: Jonesboro the city, and the fact that it is in east Arkansas, known for its rice fields.

So I feel for people such as the Canadian woman who have been struggling with aphasia after her stroke:

“I still…lots of things I can’t talk,” she said, speaking slowly. “It’s in your head but it won’t come out.”

My stroke happened on the left side of my brain, and it slowly rewired itself so that my speech, reading and writing abilities slowly came back. I still feel that my speech is not quite what it was, but so much better than that day in 1998.

Photo from
National Institute on Aging

A recent article might explain how rewiring might happen, quoting experts how both sides of the brain are involved in speech, study finds:

Speech involves the use of both sides of the brain, according to a study that may overturn the widely held belief that only one side of the brain is used for this task.

The findings improve understanding of how speech is generated in the brain and could help lead to new ways to treat speech problems, the researchers said.

Much more research is needed to help so many people struggling with speech problems after strokes.

Fascinating look at stroke results, recovery

A fascinating article - complete with videos - comes from a Canadian media outlet, how stroke survivors can experience 'bizarre' syndromes:

Every 10 minutes in Canada, someone suffers a stroke, and while the physical impacts are often obvious and familiar – a limp, or a paralyzed arm – equally devastating are the hidden, cognitive disabilities that can convince some people they’re losing their minds.

After decades of neglect, science is beginning to unravel the strange, but fascinating, neuropsychological syndromes that can occur when neurons die and the brain tries frantically to rewire lost connections – conditions that will increase as the population ages, because one of the single biggest drivers of stroke risk is age.

The articles runs through a half-dozen less common - but very real - stroke results that can change how people perceive our world and how they speak.

And it speaks to the real need for long-term therapy for stroke survivors. It quotes Dr. Dale Corbett, scientific director and chief executive officer of the Heart and Stroke Foundation’s Centre for Stroke Recovery in Ottawa.

“The brain is so fascinating, and so complicated,” said Corbett.

With the right therapy, people will often continue to recover “long past what we would have normally expected.”

Stroke recovery with an iPad

Back about 15 years ago, I used a educational toy called a Geo Safari to help me bring back some language skills after my stroke, in addition to speech therapy.

Now, moving 15 years to the present, current stroke survivors can use even cooler technology. I ran across one story how a support group uses iPads to help stroke survivors regain function:

"The applications are on my laptop," [Suzanne] Hill said. "I'm on it most of the time. There are 15 applications that I can use. I just enjoy it so much. There's no chore to any of this for me."

Indeed, some of the apps are games, such as Scrabble or connect-the-dots. Some resemble putting the user back in an elementary school classroom, such as viewing a picture of a dog, then selecting the letters from an alphabet jumble to spell d-o-g.

"I have limitations on my right side," Hill acknowledged. "My right hand is not so flexible, (but) my typing skills are coming back."

Fighting aphasia to communicate

I lost the ability to speak during my stroke - and struggled to regain the ability to speak coherently.

A recent story about how another stroke survivor fought to communicate:

However, last year, everything came to an abrupt halt when Alster suffered a stroke while traveling in his car. He awoke from a coma after three weeks in the hospital and was discharged to Morse Geriatric Center for rehabilitation. He could not speak, had no mobility and could not feed himself.

Alster entered the aphasia program at Morse, and with the help of his rehab team, led by Debbie Trontz, along with his own fighting spirit and motivation from his wife, he eventually learned to speak once again, eat and walk.

Speech recovery can continue for years

I've been convinced that stroke recovery doesn't all happen in the short term - a year or less. In my own  experience with aphasia, it can take years to recover.

Now, I see a Wall Street Journal article about how new therapies help stroke survivors recover language years after injury:

Encouraging new evidence is emerging to suggest the brain’s plasticity, or its ability to change and heal, may last many years after injury—far longer than the commonly assumed plateau for speech recovery of about six months to a year after stroke. Insurers, for example, may only cover the cost of one-on-one speech therapy sessions for the first few months.

“The conventional wisdom has long been that after a year post-stroke, you aren’t going to get any better,” says Cynthia Thompson, director of the Center for the Neurobiology of Language Recovery at Northwestern University. “But the brain continues to change until you die."

Certainly, in my case, rapid change took place in the first few months after my stroke in 1998 - starting with complete lack of speech back to a career in journalism.

But later, even years later, I would catch incremental improvements. Now, I still have some lasting effects (in my opinion) in the speech department, but I refuse to rule out even additional improvements.

Fifteen years ago today...

Fifteen years ago, this was a bad day. But the day could have been far worse.

May 8, 1998, started as a busy work day for a reporter, starting with two-hour drive from Little Rock, Ark., to Batesville, Ark. Fellow reporter Sandy Davis and I were sitting in a government office, sifting through boxes of documents.

About noon, my right arm and right leg fell useless. I could not speak. I was in the grip of a stroke. Sandy got help. An ambulance crew took me to White River Medical Center.

For this 15th "anniversary" of my stroke, I spoke with Dr. John O. Collins, the neurologist who treated me with the clot-busting drug tissue plasminogen activator, or tPA. At the time, he was practicing in Batesville, the small town where I grew up. Not long before, he'd finished a medical residency at the University of Maryland School of Medicine in Baltimore.

I was the first patient he administered tPA to on his own.

"You were a classic case," he said. Within an hour of my symptoms, a CT scan showed a blood clot, in the left side of my brain. About two hours after my stroke, the tPA started flowing. Shortly afterward, I showed clear signs of recovery. My arm and leg could move once again. I struggled with speech but that, too, came back.

The drug tPA was rarely used in 1998 - especially at small town hospitals. It's still used only 5-10 percent of the time, often because people don't get to a hospital in time for the treatment, Collins said.

He stayed in Batesville for four years and now practices in Fort Wayne, Ind., where he  frequently works with stroke survivors in their recovery.

He was one of a series of health professionals, along with colleagues, friends and my wife, Laura, who helped me recover physically and regain my abilities to speak coherently and eventually to write again.

I thank God for all those people. He gave me their help and the strength to get through some struggling recovery times.

But as the first blog posting here back in 2005 states, it's really not about me. The purpose of today's posting is to remind people to know the stroke signs and symptoms and don't delay getting help. You can save or change a life.