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!
Monday, September 24, 2007
Thursday, May 10, 2007
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.
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.
Wednesday, March 28, 2007
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.
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.
Thursday, January 25, 2007
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!
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!
Monday, January 15, 2007
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.
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.
Friday, January 12, 2007
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.
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.
Thursday, January 11, 2007
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.
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.
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