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Aphasia

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Living with Aphasia: Loss of Control

One of the reasons that I started this blog was requests, from professionals working with persons with aphasia and their care givers, to describe what aphasia looked and felt like from the inside. I have been struggling with the following question for a couple of months. How do I express frustration without it sounding like despair or depression, and yet not minimizing those feelings of frustration?

Aphasia literally means loss of words. Practically, I have found it means loss of use or control. Ever since the earliest of times, even in the Garden of Eden, the first step to control or to use something was to name it. If I can’t remember the name of something, how can I ever expect to be able to use it or control it?

Prior to two years ago, I believed that God had given me a greater sense of freedom. If I felt the urge that it was time to change jobs within academe, I could take the initiative and try to get a new job. Today, I do not have that option. Aphasia, fatigue and age now preclude me from working at those jobs that I loved and enjoyed within the academy. Honestly, I am sad and frustrated with that prospect.  But I am not depressed, which is the question the neurologists and therapists keep asking me. I am grateful for the opportunities that have been opened to me prior to this, as well as the work that I have been able to accomplish up to now.

I also want to make something clear at this point. Although I may be frustrated, my frustration has not taken away my sense of gratitude for the life that I have lived, the work that I have accomplished, or whatever lies in front of me. A recent episode of “Criminal Minds” ended with what I found to be a thought-provoking conversation. One FBI agent was asked if the victim that they had just saved was okay. A second agent involved in the rescue responded that the victim was strong but scarred. The first agent then said, “You can’t come through something like this without getting scars. But scars only show us where we have been;, they do not dictate where we are going.” Another agent then closed the show with a Ralph Waldo Emerson quote by saying, “What lies behind us and what lies before us are tiny matters compared to what lies in us.”

At times, I feel scarred, but I know it’s not the end of the road. I don’t necessarily know where the road is going. But I am grateful for the opportunity to once again play the game that my wife and I used to play many years ago when we took Sunday afternoon car rides. Whenever we came to an unfamiliar intersection, we would look at each other, pick one of the roads and say to each other, “Wonder where this road goes?”

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This Is Where It All Began

IIn the aftermath of a traumatic brain episode (a blood vessel in a benign tumor exploded creating all the symptoms of a stroke) I was left with medical and the therapeutic community described as a mild case of aphasia. I know they are correct in that assessment because I know people with severe, progressive aphasia. But for someone who lived off the use of words for 40 years, it completely changed my life.

IAs I reread it, I remembered the conversations that it engendered with my speech therapist when I first wrote it. That reminded me of a comment Glenn Fry of the Eagles made when he came onto stage after an intermission during the concert the Eagles gave during their “Hell freezes Over Tour.” He looked at the audience and slowing said, “This is where it all began.” The audience broke into applause before the band played the first note of the song, “Take It Easy.”

At another point in the concert, Fry gave a hint at the rationale of the title off the tour. He said, “Just to set the record straight, we never broke up. We just took a 14 year vacation.”

The next posting “Words are More Like Cats Than Dogs” is “Where it all began.”  As I worked with a speech therapist for months after my traumatic brain episode to try to regain what I thought was passable use of words and language, the following idea started ruminating in my head.

Words are not doing what I want them to do. They are being obstinate and doing what they want to do. Then it hit me. They are acting like cats. They don’t necessarily come to you when you call them. They come to you when they are good and ready to come to you.

As I discussed this with my therapist, she challenged me to describe the process that I was using to try to overcome this apparent difficulty.

As she challenged me to improve, she would have me do exercises over and over again. That’s when I remembered the things that I heard or had been told throughout my life time about practice. Slowly the stories about how and why practice was useful came back. As they came back, I would make notes about them. From those notes came this first essay that described my journey with aphasia.

As a number of individuals have noted, my 40 years in the academy show clearly in my writing. One editor with whom I have worked, accused me of having the Russian novel virus. I can’t say hello in less than 750 words.

However, as many within the aphasia community have read this essay, they have found it very helpful in dealing with their patients or loved ones. This past summer, Dr. Audrey Holland translated my essay into an aphasia friendly format. I encourage all of you to  look at her translation. It is found at     http://aphasiacorner.com/blog/?s=Words+are+more+like+cats

I have found Aphasia Corner encouraging and helpful. I encourage everyone I know that has the smallest tie to aphasia to subscribe to or bookmark their website http://www.aphasiacorner.com  One of the first things I learned is that I am not alone. There are many others who have been touched by aphasia.

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Words Are More Like Cats Than Dogs

Words are more like Cats than Dogs

A Commentary on Aphasia

Bayard (“By”) Baylis ?2

Aphasia is an acquired communications disorder usually as a result of a stroke or a brain injury.  It strikes approximately 100,000 Americans each year. It is more prevalent than Parkinson’s disease, but fewer people are aware of it, and fewer still familiar with it. It affects different people differently. In my case, I have difficulty in remembering words on call, and in following arguments and directions, especially verbally. I need to see something in writing to be able to digest it slowly. For someone whose life revolved around the use of words and arguments this has been difficult. The following essay is my attempt to describe what it’s like trying to work with words and arguments suffering with a mild case of aphasia.

Due to a medical episode in March, 2009 and the onset of a mild case of aphasia, I have come to the realization that words are more like cats than they are like dogs. Cats are independent and dogs are dependent. One wag put it this way: “Dogs think they are people. Cats know they are better than people.” Dogs come to you when you call them. Cats come to you when they want to come to you. That is a perfect description of words to someone who is suffering with aphasia. Words come to you when they want to come. They don’t come to you necessarily when you call them.

Aphasia can be an insidious condition. Neurologists call it a deficit. People suffering from it lack the ability to find or remember the right words on demand. Much of the time the only person that recognizes that you are suffering from it is yourself.  You know what you are thinking and trying to say, but you just can’t find the right word to express your thoughts. You go ahead and say something that still makes sense but it is not quite exactly what you wanted to say. Because you are carrying on a rational conversation, the person to whom you are talking has no idea about the battle that is going on in your mind. It is a battle of wills. It is a battle of your will against the will of the words that are locked in the recesses of your mind. Words are acting like cats and are not coming to you when you call them. Hours or days later the right word comes to you, but it is too late to put a perfect end on that argument in which you were engaged.

Arguments are like geometric solids. You should be able to pick them up and look at the various facets of an argument, just like you can pick up a geometric solid and look at the various sides of the solid.  The person who is suffering from aphasia has difficulty in doing that, at least that is what I have found in my case. In addition to not being able to find the right word to use in a particular setting, I have had difficulty in understanding how particular words used by others fit into the argument that they are trying to establish.

The human brain is a marvelous entity. Now, there is an example of what I have been trying to say. “Entity” is not quite the word that I want to use, but I can’t find the right word so it will have to do.  How do words get into the storehouse of the brain? How do we learn new words? That question has been around in one form or another for more than 2500 years. Confucius answered this way: “What I read, I forget. What I see, I remember. What I do, I understand.” Words become part of our usable vocabulary as we use them repeatedly. What is happening in the brain? Every time we use a word, either a new synaptic connection is built, or an existing one is strengthened. What appears to be happening with aphasia is that something is interfering with those synaptic connections. Part of what is marvelous about the brain is that when one route is broken, the brain constructs another route. For dog lovers among the readers of this, “There is always more than one way to skin a cat.”

How am I learning to cope with aphasia? I remember an old joke, the throw-in line from a television commercial, and a piece of advice that my Babe Ruth baseball coach kept repeating and repeating. The old joke is the one about a young musician standing on a street corner in New York City with a violin case in hand. He asks an elderly gentlemen seated in the bus stop pavilion, “Excuse me, sir. How do you get to Carnegie Hall?” The elderly gentlemen seeing the violin case, replies wryly, “Practice, practice, practice.”  You may have seen the television commercial in which an amateur softball shortstop makes a few attempts at fielding ground balls and flipping the ball to second base to start a double play.  The amateur shortstop gets it right once and an announcer says, “Amateur athletes practice till they get it right.” The scene fades out and in fades the scene of a very recognizable professional shortstop.  He is taking ground balls and throwing them toward second base to start a double play. The announcer then says, “Professionals practice until they can’t get it wrong.”

In music, and athletics, it is universally accepted that to succeed, you must practice. In education, there is a debate about how much practice and repetition is good for students. However, research in cognitive science clearly shows that for new skills and knowledge to become second nature, sustained practice beyond the point of mastery is imperative. There are three keys to remember in this statement. The first key is that to obtain mastery in a new skill or knowledge it is necessary that we must learn through practice. One undeniable aspect of practice is time on task. We must spend time doing it. How long does the professional musician spend practicing? How long do the top college basketball teams practice? Coach Izzo, from Michigan State University, is known for his foul shooting prowess and the demands on his players to be able to shoot free throws. Coach Izzo has been known to make more than 100 consecutive foul shots. How did he get to be that proficient? When he was a high school player, he missed a foul shot that could have propelled his team to a state title. He vowed that he would never be in that position again. In his spare time, he began shooting foul shots and would not quit until he made 25 in a row consistently. When he reached that plateau, he upped the number to 50, and so on. When he became a coach, he “challenged” his players to do the same. Practice, practice, practice!

So, practice makes perfect. Not exactly. The second key is that through our practice, we must reach the point of mastery. It is not enough to just practice. I don’t think that I will ever forget my Babe Ruth League baseball coach. We practiced twice a week for several hours each. He would spend the first 30 minutes of each practice session teaching us skills. The next 30 minutes were spent going over skills that we learned in previous practices. The remaining 60 to 90 minutes of practice were spent in batting practice or in running through game situations. However, no matter where we were in the practice, if one of us made either a physical or mental mistake, Coach would stop practice right then. If the mistake was mental, he would ask the involved individual what he did and what should he have done. If the mistake was physical, Coach would stop practice and have us repeat the action. We would repeat it until we got it right several times in a row. I don’t think I can count the number of times that we heard Coach say, “Practice doesn’t make perfect, perfect practice makes perfect.”

The third key for new knowledge or skills to become second nature is sustained practice beyond the point of mastery. The concert pianist practices a piece until she can play it without thinking. The fingers just go to the right keys by themselves. She’s done with that piece, right? No! If she wants to maintain that piece in her repertoire, she must continue to practice it. I remember very well a conversation I had with a concert pianist that I had asked to become chair of a music department. After three years in the job, the individual asked to be relieved of the position. This individual was doing a great job as chair, so I asked why give it up. The answer was very quick and to the point. Not enough practice time. Instead of eight hours a day, the pianist could now only find two to four hours per day to practice. That was not enough to maintain perfection in the pianist’s repertoire. Sustained practice beyond the point of mastery is the key to success in the concert arena.

Time on task! Perfect practice makes perfect! Am I just talking about music or athletics? No. I am also not just talking about those disciplines that are considered practical or skill-oriented. I am talking about learning in general. Richard Light, a Harvard professor, in his book Making the Most of College, asks the question, “What is the difference between the typical Harvard student and the typical community college student?” His answer may not agree with your intuition. He said that the primary difference is not innate ability. He suggested that there were two significant differences. The first was the expectation of necessary study time. Most Harvard students come to college expecting to study many hours a week. The second difference was that most Harvard students spent the number of hours studying that they had expected to spend. Learning is important to typical Harvard students. They spend the time necessary to learn.

In terms of my aphasia, I must spend time with words. I must use them over and over again. I must find new words or forgotten words and use them correctly.  Perfect practice makes perfect!  What kind of practice? I find cross-word puzzles helpful. I find reading helpful. However, the most helpful exercise is writing. In writing, I have to find that right word by digging around in the cluttered closets of my mind.  I must use words until I am comfortable with them and they are comfortable with me. Just like cats, they must want to come to me and stay with me.

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We Are All Different

Living with aphasia and epilepsy has reminded me of a very important lesson in life. That lesson is that: “We are all different. One individual is not necessarily better than another. He or she may just be different.” What am I talking about? Four incidents in my life have reinforced this lesson. You might say that I have been a slower learner.
The first incident was an automobile accident more than thirty years ago. I was stopped waiting to make a left-hand turn and I was rear-ended by a car doing forty miles per hour. Due to the whiplash caused by the accident, the back of my head struck the head rest, breaking it off. In doing so, I suffered a serious concussion that permanently affected my sense of taste. Ever since that accident, everything has tasted salty. For more than thirty years, I have not had to salt any food at the table. For a short time after the accident, I had a memory of what food “actually tasted like.” After thirty years, the memory of “true taste” has faded away. What should have this taught me about the difference in people? We observe the world through our senses. My sense of taste is different from yours. Because they are different, that doesn’t make one any better than the other.
The final three incidents are all related to just one episode. A blood vessel in a benign tumor in my brain burst, giving the appearance of a stroke and leaving me with many of the same after effects as those of a stroke. The first of those effects is that my physical ability to get around has been diminished. Prior to this episode, I was considered athletic. Until my knees gave out a couple of years ago, I had played fairly competitive basketball and softball for more than fifty years. Over the years, I had four different college basketball coaches invite me to come in and teach their teams how to set picks. Today I need a cane to walk about outside our house. If I am going to walk any distance, I need a stroller with a seat in case I must sit down. Today I have a handicap parking hang-tag to permit us to park in those special parking spots. Was the athletic me any better than the challenged me? I am still me. I am just different.
A second result of either the burst blood vessel filling my cranial cavity with blood or the subsequent removal of the benign tumor is a mild case of aphasia. Aphasia literally means “a loss of words.” It is a communication disorder which affects my ability to use or understand written or oral language. It hasn’t affected my mental capacities, just my ability to use words in a timely fashion. I can still analyze situations as well as I did before. I just can’t respond to them as quickly as I previously did. I know what I want to say, I just can’t find the right words to express it quickly. I need more time to write articles like this, but I can still write. Was the old me better? I am still me, I am just different.
Also as a result of this episode, I had four grand-mal seizures and am now labeled epileptic. Although I am on anti-seizure medication, my wife and I must be on guard for the signs of another seizure. Since not enough time has elapse since my last large seizure, my driving privileges have been taken away from me. Does not being able to drive make me less of a person? I don’t think so now. Prior to this happening to me, I might have thought so.
Before these incidents and after effects, I know I thought differently. I now see why we need to do everything we can to “even out the playing field” in school and work situations for people with challenges. I am more sympathetic to students who need extra time on tests and assignments. They are not lesser persons. All of their capabilities have not necessarily been affected. They can be just as smart. They may just be a little slower. They may even see or taste things in a new and different way that can lend a new perspective to a problem and lead to a new and different solution. My continual salty taste has had one advantage. Coffee that tastes bitter to other people actually tastes okay to me.
For people who see differences as signs of being less of a person, I am not recommending that we need to beat them up one-side of their head and down the other until they change their mind, even though that’s what it took for me.

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Living with Aphasia: Teaching Old Dogs New Tricks

For Me, Aphasia Is Like Solving Jig Saw Puzzles with Missing Pieces

When asked what it’s like living with aphasia and trying to speak or write, I describe it by saying that it is like putting together jig saw puzzles with pieces missing. One trouble with both writing and jig saw puzzles is that you usually don’t know pieces are missing until you get pretty far into the process of writing or solving the puzzle. Like most people, I do jig saw puzzles section by section. After I work on a section for a while, sometimes, I get to a particular place and I find a puzzle piece is missing. I can’t find it. It is just not there. I have hundreds of puzzle pieces spread out in front of me. With writing I get to a particular place and I can’t come up with the right word. I have thousands of words running through my mind. Whether with jig saw puzzles or writing, I am shuffling through all those pieces and words, but the right one that perfectly fits in that one place, is not there. What do you do with jig saw puzzles in this situation?
Most people would usually start looking at another part of the puzzle and try to find puzzle pieces that fit into that new part of the puzzle. If I do that enough for a puzzle, I will use up all the pieces that were in the box, and then I would know for certain that a piece or two are missing. After searching the house for the missing pieces, I might get out the other puzzles and see if the pieces got mixed up in those puzzle boxes. After all that, I really only have three choices: 1) pick up the puzzle pieces and put them back in the box and mark the box to indicate that a piece or two is missing; 2) go to one of those websites that advertize that they can replace missing puzzle pieces and purchase new pieces; or 3) pick up the unfinished puzzle and throw it away.
With my writing, I operate similarly. When I find myself stuck on a word, I will finish the remainder of the essay and then come back to the part with the missing word. Sometimes by then I will have found the word. Sometimes I haven’t. At that point of time, I will start searching in earnest through the word helpers like a cross-word dictionary or a thesaurus to try to find the right word or words. If that doesn’t work, I will set the essay aside and come back to it later. If I can’t find the right word or words then, I know at that point it is time to ask someone for help to find the appropriate word or words. That is like going to the puzzle websites to buy missing pieces. If that doesn’t work, I can either put the project aside and wait for a long time before I come back to it, or I trash it and forget about it.
Right now I have five or six projects on my computer that I have started but are in various stages of incompleteness. For the ones that are almost complete, I have sent copies to friends and former colleagues and asked them to review the projects and make suggestions. For the ones that I think still have possibilities but are in a much rougher state, I have set them aside, and I will come back to them off and on, at much later dates. Over the past months, I have looked at several essays that I have started and have decided that they are beyond repair or restoration. I have trashed them. I keep a file of ideas for essays, just the ideas, but not the real rough starts. Perhaps, I will come back to these ideas with a totally different approach at a much later date. This is a whole new way for me to operate, but it permits me to write and still cope with my mild case of aphasia.
If someone else has used the analogy of living with aphasia to missing jig saw puzzle pieces, I apologize for appropriating it. As an academic I have been trained to give credit for ideas to where credit is due. I did what I thought was a fairly exhaustive internet search on this topic and came up with nothing that was similar to the approach that I am taking in this essay. There were references to many exercises in aphasia therapy in which the individual with aphasia is asked to fill in a missing word in a simple sentence or to name a missing object in a simple picture. However, none of them compared the exercise to missing pieces of a jig saw puzzle. There were many references to autism as living with missing puzzle pieces, but none to aphasia that I could find. In dealing with autistic individuals or individuals with aphasia, I would in no way suggest throwing them away. Here is the place for a therapist or a care giver to provide the right degree of challenge and support to help the individual. An essay or a piece of work is far different from and far less valuable than the individual, although, for many of us, we find it difficult to separate ourselves from our work. It is a lesson from which we could all benefit.

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Living with Aphasia: Teaching Old Dogs New Tricks

Living with Aphasia: Teaching Old Dogs New Tricks
By Baylis
You can’t teach old dogs new tricks. I have heard this saying for many, many years. (Does that make me an old dog?) Over the years, I have observed the difficulty in retraining dogs that have become acclimated to behaving in certain ways. You never heard this saying about cats. I don’t think cats were ever mentioned in the same way because cats are very hard to train in the first place. They train themselves. However, once a cat has settled into a routine, it is extremely difficult to break that routine. We had a cat that we started feeding first thing in the morning. After that, if we didn’t get up when the sun would first rise, this cat would come into our bedroom and gently remind us that it was his feeding time. He would put his face right next to our faces and start rubbing against us or purring.

I have now had first-hand experience with this adage. For many years prior to the hemorrhage in the  blood vessel in the tumor on my brain, I was not the best filer. My filing system has been called clutter. I would have eight to ten piles of papers or journals all around my office. There did not appear to be any rhyme or reason to the piles. However, I was renowned for my memory. I would easily have a dozen jobs in the air at any one time. When someone would come into my office to talk about something, I could inevitably go to the correct pile and within a minute or two, find the document that we needed to discuss. People were amazed that I knew where it was. I can’t do that anymore, although I still have eight to ten piles of papers all around my office at home. However, when I get an idea about how I can update an essay or article that I’m working on, I can’t find the documents. Since I can’t use my former filing system anymore and knowing what it was probably won’t help other people now, I will let you in on my secret of filing prior to the episode. As I said I had a good memory. But I was not remembering exactly where a particular document was. What I doing was constructing those piles according to the day that I worked on the particular project under question. All I had to do was remember what was the last day I had worked on the project. I could go to that pile and find the needed documents.

Since the episode I have tried to put all the documents that I work on in manila file folders and label the file folder. The difficulty that I will have to teach myself to overcome is to now put the file folder away in some semblance of order other than by date. I spent several days this past week alphabetically filing all the file folders that accumulated in my office, first according to author and second by title. It’s amazing what I have found. There were several duplicate files, that if I had been following this procedure all the time, I wouldn’t have had to create. What’s also true, but should not be amazing, is there are some things that I know I worked on but are now lost.

The second lesson that I have learned through this process is that one needs to keep one’s computer files in order also. There are documents I know that I have created but they are nowhere to be found on my computer. I have looked at all the files alphabetically and chronologically, and the documents under question are nowhere to be found. To try to remedy this situation, I first set up a spreadsheet listing all the files I created. The spreadsheet had entries that could be sorted by name of file, author, source (if it was from a journal or website), and date. As I created new files, I entered the information related to that file on the bottom of a front page and copied that front page to various pages that I then sorted by title, author source and date. I know this type of problem and process is more suited to data bases. Why did I use a spreadsheet and not a data base? I have always been more comfortable setting up spreadsheets than data bases. The old dog is barking again. I have learned the hard way this is more of a data base problem than a spreadsheet problem. The last two times I sorted the pages of the spreadsheet I didn’t make sure that I was sorting the whole page, and I found I was mixing up file titles with the wrong source or date. This week I believe that I will have to step out and try two new tricks. The first is to create sub-files on my computer and file documents in an appropriate sub-file. The second is to create a data base for my files. Next week I will report on my success or failure.

In our adult Sunday school class this past week we were discussing Abraham and someone asked the question: “Why do we seem to learn more from failures than successes?” Another individual brought up the example of Thomas Edison. After more than 100 attempts to construct a working light bulb, someone asked him if he was discouraged. I think his response can help us. He is reported to have answered the question by saying, “No, I am not discouraged. I now know 100 ways that won’t work. I won’t use any of them again and I can try something else.”

As I live with my aphasia and memory problems, I am collecting a whole set of practices that I now know I won’t have to try again. I won’t have to make those mistakes again. I have also learned the secret to teaching old dogs new tricks. It is actually quite simple. KEEP AT IT; DON’T GIVE INTO IMPULSES OR WHIMS. The minute you let the old dog revert to his old behavioral patterns, you have to essentially start over again with the training. With that in mind, I decided to try practicing some of the new filing techniques this week. How is it going? The best I can say is that it is going, but not as well as I had hoped. I must admit I have had to resolve to start over twice and I must also admit that I failed in setting up a working data base. Old habits (Old tricks) are hard to shake off. What actually are old habits? They are engraved patterns of behavior, etched into the synaptic paths of our brain. To construct a new habit, we must break down and eliminate as much as possible the old habits. What we know from brain research is that unless the paths are completely eliminated by damage to the brain, those paths are still there. We can make new dominant paths but the old paths are still there, and the individual can easily revert to those paths. It’s similar to putting a new roof on a house, you really should remove the old shingles before you put the new shingles on. If you don’t, the new shingles will not always as effective as they should be and you will have to replace them much sooner than you normally would. If you have read my first blog on living with aphasia, it’s all about the story of perfect practice making perfect. The amateur practices until he gets it right once. But that’s not enough. Chances are, when the next opportunity to make that play or perform that number occurs he’ll get wrong again. The professional practices until he can’t do it wrong. The muscles are locked into particular movements and the individual just does them naturally.
I have just discovered a new (new to me) site for aphasia patients and caregivers. It is a blog entitled Aphasia Corner. It can be found at http://aphasiacorner.com/blog/category/aphasia-corner.
I invite you to look them up. Someone involved Aphasia Corner has my type of humor. QUESTION: What is aphasia? ANSWER: It is the weapon on Star Trek used to blow up enemies. You don’t ever want to lose your sense of humor. Even in the toughest of times, a laugh can be medicine for the soul.