'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.

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."

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 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.

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:

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.

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.

What people can't see can still be real

Photo by Allan Ajifo

I can relate to this. I have no physical signs from my stroke. But I certainly felt the affects of aphasia (click here to read more about aphasia). Most are now gone, but for some these "hidden disabilities" are more long term.

Here's a relevant look at “hidden” disabilities after stroke:

Williams said she thinks that her disabilities aren’t taken as seriously as physical challenges.

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:

Looking at how aphasia affects speech and writing - but again, NOT intelligence

Don't read too much into the study itself, since the group studied just five people with aphasia - a language disorder that often strikes stroke patients - but I can certainly relate to many of these experiences.

Bumper sticker image from U.S. Veterans Affairs

One of my own quirky problems revolved around pronouns - he/she or her/him, for example. I would frequently misspeak them - calling a she a he or saying him when I meant her. That problem has pretty much resolved itself, but it was very frustrating at the time.

So if you know someone who had some of the problems described below - or you have had a problem like this yourself - know that you are definitely not alone. And, as I've said repeatedly, aphasia does not decrease intelligence.

So read how the brain separates our ability to talk and write:

The team, which included Simon Fischer-Baum of Rice University and Michele Miozzo of Columbia University, both cognitive scientists, studied five stroke victims with aphasia, or difficulty communicating. Four of them had difficulties writing sentences with the proper suffixes, but had few problems speaking the same sentences. The last individual had the opposite problem -- trouble with speaking but unaffected writing.

'And the Lord hears them' - even with aphasia

The righteous cry out, and the Lord hears them; he delivers them from all their troubles. The Lord is close to the brokenhearted and saves those who are crushed in spirit.

-Psalm 34:17-18

"Righteous" can be a scary word. In this context, David was talking about those who were following God. And God loves and accepts even those imperfect followers like me. (And you!)

The last post was about aphasia, a language problem that can be the result of a stroke. It's often misunderstood - as anyone afflicted with aphasia would know.

So the best part of the verse: "...the Lord hears... ." I'm convinced that God hears one despite language problems, even despite one's silence or those who are struggling for words to speak. God hears you. When you are frustrated, God is close, ready to save "those who are crushed in spirit."

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:

The stress of aphasia and recovery

When my stroke happened, I couldn't talk. I slowly recovered that ability, but not without some stress, worries and frustration. And, as this story (link below) reminds everyone, aphasia doesn't reduce intelligence.

Check out this story about someone who speaks volumes of stroke rehab - by not saying much at all:

The stroke survivor has spent the last six years learning to speak again, thanks to aphasia, a condition that can range from trouble finding words to losing the ability to speak, read, or write.

It does not affect intelligence. Tom understands exactly what you've said, and in his mind knows what he wants to say - but the message gets scrambled when he opens his mouth to articulate a thought.

"Before...smoke, smoke, smoke," Tom said in describing what likely led to the stroke at just 49. "But now - quit."

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.

They know what they want to say ...

My words: towrith, rithe, rice.

And I was trying to say "Jonesboro."

That's what happened as a result of my stroke in 1998. My wife had asked me to say the word Jonesboro, a northeast Arkansas city I'd recently visited, and that's how it came out: towrith, rithe, rice. I knew what I wanted to say, but just couldn't say it. Intelligent wasn't affected - just the connection between thought and actual speech.

Thus began my education about aphasia and stroke results. And many, many stroke patients have language difficulties.

So, I watch out for news about aphasia and ran across a recent article about recovering language after a stroke:

“People refer to it as kind of being in a prison because they have the words. They retain their knowledge and intellect,” says Ellayne Ganzfried, executive director of the National Aphasia Association in New York. “They know what it is they want to say, but they can’t access it the way they used to.”

Ganzfried estimates that between 25 and 40 percent of stroke victims suffer from aphasia, a condition that can also result from brain tumors or other neurological disorders. With stroke victims, various levels of communication can be affected, depending on what part of the brain was most damaged and how significant the stroke was, adds Michelle Troche, director of clinical science research at the University of Florida Health Upper Airway Dysfunction Lab.

“Aphasia is when someone has trouble coming up with words, grammar, comprehension … There can also be the speech problem,” Ganzfried adds. “It’s not as crisp because of weakness in the muscles.”

A good article that might help others understand the problem - when the thought process is still intact but the speech process is interrupted.