The Stroke Network, Inc )
Aphasia Community

By Chuck Hofvander


Aphasia, for those of you that are not familiar with the term, describes an impairment of the ability to communicate, not an impairment of intellect. Aphasia can range from just missing a word now and then to the inability to communicate at all. Aphasia is not well known, but there are 600,000 new aphasia survivors EACH YEAR in the U.S. alone. Some like Dick Clark are well known but there are many others who are hidden from view because of their inability to communicate.

Edie Babbitt, M.Ed.,CCC-SLP Speech-Language Pathologist, a researcher on aphasia at Rehabilitation Institute of Chicago (RIC), describes it as: “Aphasia is a result of damage to the brain in the language area. It is not only difficulty communicating with others through talking and listening, but affects reading and writing as well.”

Dr. Leora Cherney, Ph.D. CCC-SLP, Board certified – ANCDS, at the same facility, adds “typically within the left hemisphere. Because language is so important for so many things that we do (socially, vocationally and recreationally), the presence of aphasia, even when it is mild, has a huge impact on the person, their family, and their community”
 



A part of a community, that’s key.

I have aphasia caused by a stroke. Through hard work and perseverance I improved a great deal. Yet, I’m not nearly back to the way I was. I can “think it” but cannot “say it’ or “write it.” My mind seems to have a will of its own.

As for reading, challenging is too mild a term. I’ll try to simulate what it’s like to have aphasia, here’s a quote from Arthur Schopenhauer, philosopher, and I’ll try to write it as an aphasic might read it (one thing, the underlined words are words that I incorrectly inserted because that’s how an aphasic might read it): “Because people with [no that’s wrong, go back and read it again] have no thoughts in [no that’s wrong again] to deal still under the law[ no that’s still wrong] in, they deal cars, and try to [wrong again] and win one another’s money. Idiots!” Confused? Here is the real quote: “Because people have no thoughts to deal in, they deal cards, and try and win one another's money. Idiots!”
 

Idiot, that’s how I feel because I can’t read it correctly! I insert words where they are not supposed to be, omit words that are printed on the page, and read the same line time and time again!


There are centers specifically dedicated to aphasia in NJ, CA, NC, Toronto and London that have groups and classes several days a week. In Chicago we have The Center for Aphasia Research at The Rehabilitation Institute of Chicago (RIC). The Center has many programs designed to aid those with aphasia. From conversation groups, to book clubs, to current event discussions, and story telling they attempt to cover a range topics.
 



I spoke to Leora
Cherney and Edie Babbitt, the people responsible for creating the center and asked them a few questions. Here they are:
 


Is there any known cure for aphasia?


Leora: No – at the present time we cannot “cure” aphasia. But we can help improve language and communication in people who have aphasia. And one day, we might be able to “cure” it – which is why we are researching different novel treatments such as drugs in combination with speech and language therapy, and different kinds of electric or magnetic stimulation to the brain.

 


What interested you in aphasia research?


Leora: A number of things. First, I like to work with people - and, in particular, people with aphasia (rather than people with other kinds of communication problems) because the person with aphasia is intelligent and is really just like everyone else, except that there is difficulty with language.
 

Second, I am interested in better understanding the brain and how it changes with therapy – which is why I am interested in research. Thirdly, I believe that we can make a difference and help people with aphasia communicate better and therefore have more fulfilling lives


Edie: My interest in aphasia started when I worked at a VA hospital in NJ as a student. I quickly learned how frustrating the struggle to communicate with aphasia can be and I also learned how much I enjoy working with people who have aphasia. The person with aphasia is still a person and I enjoy getting to know that person. As a therapist, I’ve enjoyed trying to figure out how to make the communication process easier and helping with the adjustment to living with aphasia.

 


Why is the idea of conversation and the other activities beneficial?

Leora: First, conversation is a “real-life” activity in which people use language (as compared to doing one-on-one drills with a therapist) so it makes sense to practice language within a conversational context.


Second, having groups like we do in the Center for Aphasia Research, gives the person with aphasia an opportunity to practice their conversation skills in a supportive environment – where others are willing to take the time to listen without being critical. Many people with aphasia do not get out much and are very isolated – so often they do not have anyone to talk to.


Through our groups and classes, we want to improve communication skills and, in so doing, help the person with aphasia do enjoyable activities and “get on” with their lives, despite the presence of aphasia.

 


Edie adds: Conversation is what we as humans naturally do – that’s our main form of interaction with each other. These groups and classes provide opportunities that a person might not feel comfortable doing in the “real” world. For example, a person with aphasia might be intimidated to join a book club, but feels supported in our book club because everyone has some trouble with reading or talking or understanding.
 


Do you plan to offer aphasia survivors the opportunity to lead the groups without supervision?

Edie: That will come in the future, right now we have a limited number of groups and the people in our groups have a range of severity and therefore a clinician is needed to facilitate everyone’s participation.


Leora: We want aphasia survivors to assist us in running the classes and groups. Many aphasia survivors have areas of expertise and interest areas that would be of great help to us. However, aphasia survivors do not always have the skills to facilitate communication in the more severely impaired person with aphasia, nor do they have experience in dealing with some of the medical and psychosocial issues that sometimes arise.

 



Leora and Edie are important but more important are those who attend the sessions. I asked those in attendance at one conversation group, Ezell, Dick, Becky, Dan, Michael, Larry, Dan, Sam, Mary Lou, Joe, Bob, Jim, some questions.

What is the worst part of the stroke?


• Unanimously, they all said aphasia.
 


What do you miss most because of having aphasia?


• The unanimous response was reading followed by writing, speech, and

   math. Reading puts you in another world, puts you in another place, take’s

   you away from the problems of your world. Without reading you feel

   trapped.
• “I can no longer teach.” - a response from Dan, a former department head

    from De Paul University
• I have trouble explaining complex ideas.

 


Does anyone feel that their aphasia is improving?


• At times I can almost speak normally, but it comes and goes. It’s almost

   like tides going out and coming in.
• Maybe, but rigorous speech training is the key to recovery.
• Yes, but it takes hard work and you’ve got to keep on trying.

 


What do you like about the conversation group and classes?


• They supply a sense of community that you may not have otherwise
• They provide the opportunity to do research and homework
• It comforts you in meeting with others who share the same kind of

   disability.
• Expressing your ideas with others who understand what is like to have

   difficulty communicating
 


How have the classes helped you?


• It helps with developing speech, receptive language, and attention skills.
 


What do you tell others who don’t have aphasia?


• There is a difference between your limited language output and

   intelligence.
• Please be patient with us.
• Speak slower, in shorter sentences and ask one question at a time.
• “The intelligence is still there but we can’t speak it” said Bob W.

 



I asked Leora and Edie about the future of the center.

Edie: Right now, our two biggest concerns for the future of our aphasia groups and classes are funding and space. In order for us to grow and have a space of our own, we need a big donation or a big grant.


Leora adds: We were fortunate to have had some donations that allowed us to grow from one day a week to two days a week – but we need the financial support to maintain our current programs as well as to grow.

 

Visit the Center for Aphasia Research website at www.ric.org/research/centers/aphasia.

 


While preparing to write this article, I came across this quote from William Penn and thought it describes aphasia well ‘Speak properly, and in as few words as you can, but always plainly; for the end of speech is not ostentation, but to be understood.’


Whether it’s through gestures, facial expressions, speech, or just a word, people with aphasia can communicate. Take time to understand them. They will have a lot to “say”

 


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