Would you go to McDonalds?

The other day, the members of the aphasia group were talking about what it is like to have aphasia. One person imaginatively said, "Going to an aphasia group is like being around fat people - you don't feel so fat!" Another person talked about a bad experience with the staff in a neurologist's office, "You would think that they would understand." But it was another comment that really got my attention. "Don't go to a fast food place - unless you can say 1, or 4 - even if that's not what you want!"

In our culture, there is trememdous pressure to speak quickly, and to the point. If you cannot, you are ignored, passed over, or treated like "damaged goods". The pressure is so great that sometimes at a restaurant people will order something that they don't want, just because they can say it. People who stutter know this feeling well. People with aphasia also feel embarrassed when their speech folds under pressure.

We try to tell people to live they way they want to, not to succumb to the pressure - but that takes a lot of courage!

A sad story with a happy ending!

The daughter (I'll call her Mary) of one of my clients with aphasia told me this story. When her mother had a stroke, she was seen by a speech language pathologist in the hospital. This speech language pathologist was very good. She suggested that Mary's mother write down words in a notebook, so that when she needed them in conversation, she could look them up.

Mary was talking to her son's speech language pathologist at the school that her son goes to. Mary told the school speech language pathologist that her mother had had a stroke and couldn't talk. Mary said, "It must have a name!" The school speech language pathologist immediately said, "Aphasia".

The sad part of this story is that Mary and her mother did not learn this from the speech language pathologist at the hospital. Fortunately for Mary, she had another knowledgeable resource to talk to. Many people are not so lucky. They go home from the hospital without knowing that they have aphasia. Because they do not know the name of their condition, they do not know where to go for help.

Can you imagine someone with diabetes going to the hospital, being treated, and then being discharged without ever being told that the name of their condition is diabetes? Without knowing the diagnosis, they cannot seek proper treatment or learn to care for themselves.

That is why aphasia organizations advocate that people with aphasia be told that they have aphasia. They should also receive this information in writing. That way, if they do not remember or it is too much to take in, then later on they can follow up on it.

Joanna Brock, aphasia survivor

Joanna Brock came to talk to our group recently. She had a severe stroke many years ago, but has made a tremendous amount of recovery. She walks normally, and her speech sounds normal. She still has some right hand weakness. She said she started her recovery by walking every day. At first she had to use a leg brace, but she was able to stop using it. This is what I hear from other stroke survivors who make recovery. Recovery takes constant work.

A few years ago some reseach was done that said to become a true expert in a field, for example, a pianist or a chess player, takes about 10,000 hours of practice. This practice is not just repetition, but a constant effort to improve. A stroke survivor has to work just as hard to achieve a normal level of proficiency. A brain damaged by stroke must become "expert" to function at an every day level.

Ms. Brock even became an ESL teacher, that is, teacher of English as a Second Language. I do know another young woman who took ESL classes to help her recovery after a stroke. However, Ms. Brock is the first person I know who actually became an ESL teacher. I can't think of a better way to learn language!

Ms. Brock used the language of the field of self-improvement. Never give up. Expect miracles. Listen to your inner voice. Use the strength of your higher power as you understand it. It makes sense that the same principles would help recovery, whether it is from a mental problem or a physical problem. Stroke by its very nature involves both the body and the mind.

How long can a person progress after a stroke?

At the St. Vincent's Aphasia Group the other night, someone asked, "How long can someone make progress after a stroke?" Cynthia, one of the participants, said that about a year after her stroke, she was told that she would not make any more progress. She added, "I hope I never hear that again." She said that it is now 14 years since her stroke, and her language and ability to communicate are still improving.

This is the most important thing that I have learned from aphasia self-help groups. People can keep on getting better, many years after the stroke. Any doctor or speech language pathologist who says otherwise is simply ignorant. Many health care professionals do not track people many years post stroke, and therefore are not aware of the continuing potential for progress.

One woman I met at a National Aphasia Association conference told me that she made the most progress in the 6th year after her stroke. Another man said that, 20 years after his stroke, he feels that he no longer has aphasia. A client of mine just started initiating speech three years after his stroke.

The one thing that all these people had in common was continuing to speak, to try to talk. It is important to spend a lot of time talking. It does not have to be high level conversation - just greeting people and making simple conversation keep the speech areas of the brain stimulated. The ideal situation is a job that involves constant interaction with the public, even if it is on a basic level. That means 8 hours of practice a day, and even getting paid for it!

Yes, recovery from aphasia does take intense effort. But for those who like to talk, it is also pleasurable effort. Roger Bannister was crippled as a child. By constant running, he strengthened his legs. Ultimately, he became the first man to run the 4 minute mile. The human brain is incredible in its ability to recover and reorganize!

Talking about aphasia

I think it's critical to talk to people WITH aphasia ABOUT aphasia. Here's a story I'll tell on myself. One time I went to see a lady who had aphasia. She was very alert and knew everything that was going on, but couldn't express herself. After completing the evaluation, I briefly explained the therapy process and started giving therapy. But, she wasn't interested. She looked unhappy and "standoffish".

So I said to her, "You understand everything that is going on. You just can't talk. You are not dumb or crazy." She nodded an emphatic "Yes!" After that, we got along fine, and she did very well in therapy. She just needed to know that we were on the same page.

Most people don't know about aphasia before they have a stroke. When they wake up unable to speak, they have no idea what's going on. No one may tell them that they have aphasia. It's not an easy concept to explain! Especially when you are not sure if the person even understands "water" or "chair". Even family members have difficulty understanding what aphasia is when they first hear about it.

But it's important to make the effort, and keep on repeating it, until you are sure that the person understands. You can find a simple explanation of aphasia at http://www.aphasianyc.org/friendly.htm
This explanation is currently available in English, Spanish, Chinese, Korean and Russian. If you are able to translate the page into other languages, I will post it to be available for free at the same website.

How do you show comprehension?

I was working the other day with a woman who has moderate aphasia and severe ataxia of speech. Her family said that she understands "everything". When I tested her, she did respond correctly to simple sentences. However, she did not respond correctly to complex sentences in which comprehension depended on grammatical structure, for example, "She gave a give to him" vs "She gave a gift to her". I was not sure if she was understanding only the substantive words, or if she understood some grammar as well.

While I was there, her husband came in and asked, "What day is this, Thursday?" (It was Tuesday). The woman laughed out loud. It seemed clear that she understood both the question and what day it was. This comprehension seemed to involve more than just understanding the word "Thursday". Maybe she recognized the intonational pattern of the sentence.

As I was getting ready to leave, I accidently put her workbook (which looks like my therapy book) into my backpack. She immediately made a sound and swiftly extracted her book from my backpack. If it was me, it would have taken a minute to see which book was which. So she was tracking her book and saw where I put it.

In these two situations, the person with aphasia did seem to understand everything. Comprehension involves more than grammar and words, it involves situations and paralinguistic cues.

You can always make progress!

Today I saw a person with aphasia for therapy. He had a stroke four years ago. Since that time he has not been able to speak except for "yes", "no", "coffee", and a few automatic words, such as "Fine" and "OK". He could repeat words, and finish a phrase, such as "Open the __ " with an appropriate word. But he could not initiate communication. Before his stroke, he was a teacher, a "man of words". Fortunately, after the stroke, he was still able to read and understand speech. Every day, he reads the New York Times. A few weeks ago, he started speaking words. To say words, he looks at the newspaper and says words. They are not words that are on the page or related to what he is reading about. Nor do they communicate a message. But for the first time in four years, he is initiating words on his own. I am completely amazed!

Two things may have helped him progress. The first is a CD with a "talking dictionary", in which you can tab down a list of words, and the word is spoken aloud. This was a CD to teach English as a second language, not a therapy CD. The second thing is acupuncture, which he began several months ago. I do not know if acupuncture can help aphasia, but in this case there was improvement in speech after acupuncture was started. Another woman also has done acupuncture for aphasia. She says that she doesn't think it helps her speech, but it does make her feel more relaxed. There are so few therapies for aphasia that it would be good to see research on the effectiveness of acupuncture for this condition.

Fear

Yesterday members of the St. Vincent's Aphasia Group met.
The topic was "Fear".
Here are some of the fears that were mentioned:
Initially, the fear of not being able to talk again.
Later, the fear of having to speak - for example, calling on the phone or being approached by a waiter.
Fear of having another stroke, especially immediately after the stroke.
Fear of doing things - "How will I do this?"

Not knowing how to do things is a result of several factors:
1. Not knowing how to compensate for a physical deficit.
2. Not knowing how to compensate for a cognitive deficit.
3. Part of the aphasia is lacking the words to describe to oneself
how to carry out a task or solve a problem.
4. Part of the stroke can be forgetting how to do certain things.

Everyone agreed that life goes on. Fears fade as we gain experience with ourselves and the tasks. Sometimes the fear may be real, but we can't restrict our lives because of fear. Live one day at a time, and live life to the fullest!

Functional therapy

The longer I provide therapy, the more I wonder: what is truly functional communication? Obviously, we all want to help people with aphasia communicate what they really want to talk about. But what is that?

I sometimes joke that workers in nursing homes and hospitals don't really want their patients to talk. It is much easier to just go in, "do for" the patient, and walk out. No arguing, no complaining, no negotiating!

Many people with aphasia don't have to ask to have their basic needs met. Someone will bring food and water, assist them to wash and dress, and provide for other essential needs, whether they ask or not. So what do they really need to communicate?

One family had a person with aphasia who went out and walked around the neighborhood. They didn't know where she was going or when she would be back. Of course, I didn't know exactly where she was going, either! To try to address the family's concern, I took some photos of destinations in the neighborhood and gave the pictures to the person and family.

Another gentleman eats whatever is put in front of him. He looks eager to talk when the subject of politics comes up.

The same man used a wheelchair and went out every day. His aide wanted some way that he could tell her where he wanted to go each day.

I do try to give some way of indicating family members, whether a picture or a written name, so that the person with aphasia can inquire about family members.


What do you find is truly functional communication?

"Take Time to Talk"

Some of the people in our aphasia group can talk, but they need more time to get their message across. Sadly, in our busy world, people often feel that they do not have time to talk. Mrs. P, one of the group members, says that some people will try to fill in the words for her. Maybe they are trying to be helpful, or maybe they are trying to hurry the conversation along. But if they guess wrong, it really sidetracks the conversation!

There is a real hunger to communicate among the group members. Maybe people who don't feel this need stay home! Sometimes I wonder if the group should be "doing" more. But the members say they just want to talk. It is that simple - and that difficult.

Do people who stutter and people with aphasia have anything to say to each other?

I recently attended a performance by Our Time Theatre Company. This is a performance group for young people who stutter. This particular event consisted of three one-act plays written by young people who stutter and performed by professional actors.

The young authors spoke about their work after the performance. They spoke slowly, but it was clear from their facial expressions that they could formulate what they wanted to say as quickly as anyone else. It was their ability to speak that was slower than usual.

I went to this perfomance with a few people with aphasia. My friends with aphasia communicate about as quickly as the people who stutter. But it was clear that for the people with aphasia, their delay was in the ability to formulate the thought, not only in the speech.

I wondered if people who stutter and people with aphasia have anything to say to each other? Both face difficulties in communicating with strangers who are not familiar with their communication problems. Both face prejudice and misunderstanding, both are considered to be "dumb" and maybe emotionally unstable. The pain is similar.

But their stories are very different. People who stutter have normal ability to formulate thought, even if they cannot immediately produce it. Only "the mouth" is affected, not thought. They have their speech from a young age, not as part of a "damaged brain". Do they therefore feel naturally superior to people with aphasia?

Lonely in a crowd

I visited a person with aphasia today. This lady had mild to moderate aphasia, but severe apraxia. She understands situations and simple sentences, but cannot say a word on her own. While I was there, the visiting nurse came with a translator. The nurse, translator, husband and sister all sat in the living room with the patient. They all talked to each other, but not one remark was made to the person with aphasia. Once or twice she tried to enter the conversation by vocalizing, but she was ignored. This family is very caring, a lovely family. They tell me, "She understands everything." The nurse is also a good person. It just showed how difficult it is to include someone in education, decision-making, even conversation, when that person doesn't speak. Language is so much a part of us that we cannot even imagine not having it. And when someone cannot speak, it is hard to remember that they can still think - and feel.

Treatment for "fluent apraxia"

Yesterday I wrote about two people who had difficulty sequencing phonemes, with some symptoms similar to apraxia. One of them spoke better if she spoke slowly. She used this strategy to improve over the course of speech therapy.

The other did not improve when she spoke slowly. There was no improvement with repetition or melodic intonation therapy, either. If you have had success with treating this type of speech problem, I'd love to hear from you!

Fluent apraxia?

The purpose of this blog is to reflect on aphasia, aphasia therapy and the brain. I hope that this blog will stimulate conversation about aphasia - especially among people who experience aphasia on a daily basis. Whether you are a survivor, a co-communicator, or a professional, you have important insights to share with others!

A "Fluent apraxia"?

Recently I met two people with aphasia who did not fit into the usual traditional categories of aphasia They both had good comprehension. Their speech was worse when they were saying a longer word, or a word they didn't use very often. They were very aware of their errors. So far it sounds like apraxia.

However, they had fluent speech with many phonemic paraphasias. In other words, the nonsense words sounded similar to the real word they were trying to say. Repetition was just as affected as spontaneous speech. One person found that if she spoke slowly, her speech was better. These symptoms sound like fluent aphasia.

Theoretically, I wonder if this problem is on the border of speech and language, at the level of phonemic sequencing. There is a theory that we first decide what we want to say, then we sequence the phonemes (sounds) that we need to produce to express the sentence, and then send instructions to the muscles to produce the sounds. Apraxia means there is a problem with sending the instructions to the muscles. Is there a name for the problem that only involves sequencing the phonemes?