By's Musings

Aphasia

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Aphasia and the Art of Navigation

If you have been following my blog, you know that a little more than three years ago a hemorrhage introduced me to the world of aphasia. The hemorrhage occurred in a meningioma attached to the right frontal lobe of my brain. The hemorrhage created all the appearances, symptoms and after effects of a bleeding stroke. One common after effect of a stroke is aphasia, literally a loss of words.

Aphasia is a communication disorder resulting in the partial or total inability to process language but does not affect intelligence. In my case, aphasia has diminished the speed at which I can process language and make decisions. I don’t believe it has affected my ability to make correct decisions. It has only affected the speed at which I can make, communicate or implement those decisions. Since verbal communication is more spontaneous and offers less time to process language and reflect on the underlying ideas, I have more problems with verbal communications than written communications.

This difference has been brought home to me many times in the past several weeks as I have had to serve as navigator for me and my wife as we have had to find our way around our new town. With my history of seizure activity and potential for future seizures, I have had to relinquish my driver’s license and quit driving. This has forced us to rely on my wife to be our chauffeur.

My wife is basically a good driver. However, she would readily admit that she doesn’t like driving in heavy traffic. She would also admit that she is “geographically challenged.” East-west-north-south do not register with her. She doesn’t like to read maps. She wants to know whether to go straight or to turn right or left at the next intersection.

My wife and I approach driving very differently. Our approaches to driving are the exact reflections of our approaches to cooking. My wife is an excellent cook. People are always complimenting her cooking and asking her for her recipes. Prior to my episode and before I was told to stay away from electronic utensils and objects that had sharp edges or points, I liked to experiment in the kitchen and try different combinations. People would also compliment my creations. However, when asked for my recipes, I couldn’t supply them because I didn’t use fixed recipes. On the other hand my wife is a recipe cook. She wants a list of instructions to follow precisely. This practice carries over to her driving. She much prefers a list of directions over a map.

In my battle with aphasia, I have come to the conclusion that, “I am a lousy navigator.” In familiar areas, I know where to turn and what is the best lane to be in. In unfamiliar areas, by reading a map I know where to turn. However, in both situations I can’t seem to find the words quick enough to give my wife sufficient warning of what to do next. When I find the words to indicate an impending turn, I raise the volume of my voice to emphasize the urgency of an upcoming turn. This sometimes startles my wife or makes her think I am yelling at her. Both of those outcomes could be disturbing in the least or dangerous at the worst. When she misses a turn or makes a wrong turn, I get very upset with myself. Because I am angry my next several comments will usually reflect those feelings. I am not upset with my wife. I am just upset that I didn’t direct us appropriately.

I can hear some of you saying right now, “Why don’t you use a GPS?” We have tried two different GPS’s with less than satisfactory results. GPS’s operate off of optimization principles and programs. I am reminded of the computerized room scheduling programs that were being offered to colleges 30 years ago. The claim was that these programs would greatly increase room usage efficiency by filling dead space. The claims these programs made concerning more efficient use of space were undeniable. However, the results of these scheduling programs were neither satisfying to faculty or students. It was difficult for these programs to take into account the room preference of faculty, or the desire of students to have back-to-back classes scheduled in nearby rooms. There were too many variables for these programs to account for. The human mind of an individual who knew the curriculum, the facilities, and understood faculty and student preferences was a better scheduler than a computer.

GPS’s are only as good as the optimization programs on which they operate and the information that is entered into the data bank of the GPS. How old is the basic map that is used in the GPS? New roads are added every year and occasionally roads are closed. The major choices GPS’s give you to calculate optimal routes are: 1) shortest route (based on mileage); 2) shortest time (based on estimated time to cover the route calculated using posted speed limits); 3)toll roads (use or don’t use toll roads); and 4) roads to avoid. Any changes to the optimization strategies are difficult if not illegal for the driver to make while the car is moving. Construction and local conditions like accidents are not always known before one begins the trip. Dangerous intersections are not always accounted for by the GPS. Shortest or normally quickest routes may include left hand turns against traffic, which during rush hours or school change hours can be very problematic.

We do use a GPS on longer distance trips. However, on trips around town where road conditions seem to be more volatile, even with the speed at which I can communicate route changes, I seem to be a better navigational choice for us.

These events have convinced me that there are at least two jobs that are beyond my capabilities at this moment. I would be a disaster as a spotter for a NASCAR racing team or as an air traffic controller.

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Happy New Year!

The Year 2011 is over, and Year 2012 has begun.

         If you have read any of my previous postings, THANK YOU. I really do appreciate the time and effort you have spared from all the important things that you could be doing to read about the things that are dear and close to me. I pray that you will find a nugget now and then that you can use that in some small way will repay you for your time and effort.

If you are new to my posts, please allow me three paragraphs to let you know what you will find in my posts. The three things that I hold closest to my heart are my belief in God, my wife and family, and the enterprise of education. Since a traumatic brain incident (TBI) in March 2009 and several follow-up events, I have found myself facing a taxing mental battle, in addition to living daily with aphasia, epilepsy and Parkinson’s. After spending my entire adult life training, thinking and writing in an analytic, sequential and deductive world, I found that I was now exiled to the land of metaphors.

Living and thinking in terms of metaphors was a shock to someone who was brought up in and agreed with the teachings of John Locke when he said, “Metaphors are the worst abuse of language ever invented and need to be annihilated and expunged from our usage.”  As I have now studied metaphors, I have come to a very different conclusion than Locke. Learning theorists and brain scientists have found that we learn something new by tying it to something we already know, something that is already in our heads. This is precisely what a metaphor is. Thus metaphors were a way of thinking long before they were a way with words. Therefore I, the new feeble Don Quixote, am riding off on a pathetic horse on a new quest to restore metaphors to the high esteem with which Aristotle viewed them, when he said that the proper use of metaphors was the highest form of genius.

Returning to my New Year’s Greeting, as I wrote “the year 2011 is over and 2012 has begun”, I was reminded (metaphor attack) of two similar statements. The first is from Jean Valjean’s soliloquy in “Les Miserable,” when he steals the bishop’s silver and decides to skip out on his parole. He throws up his hands and says: “No more is Jean Valjean! Another story must begin! I must escape my life of sin.” I find it ironic that he is planning this escape financed by stolen silver. From scriptures, we know that the only way to escape a life of sin is through Christ. Paul wrote in II Corinthians 5:17 (KJV) “Therefore if any man be in Christ, he is a new creature; old things are passed away; behold all things are become new.”

         Welcome to my world. The title “By’s Musings” comes from my Nick Name “By.”  Although my first name is spelled “Bayard,” it is pronounced “By’-ard.” Please call me “By.” All my friends do. Settle yourself down in your favorite easy chair, have a hot cup of real coffee (I wish I could, but the closest thing to real coffee that I am currently permitted to drink is decaf) and let’s talk, friend-to-friend.

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Gabby Gifford TV Special

I am sorry that I missed the Gabby Gifford special. Is it saved and posted somewhere? Like many others, my own battle with aphasia started with a traumatic brain incident. I had a blood vessel burst inside a benign brain tumor. My doctors believe the tumor had been growing, undetected in my head for more than 30 years. The surgeon who removed the tumor said that the blood vessel “exploded” and the tumor “imploded.” My head filled will blood. Since blood wasn’t cut off to the brain proper, it technically wasn’t a stroke. However, I was left with all the symptoms and after effects of a stroke. I was in speech, physical and occupation therapy for many months. As an administrative officer at an academic institution, words were a very important part of my work. From the first the time I woke up in the hospital after the surgery I knew there was something wrong. I knew what I wanted to say, I just couldn’t find the right word. Oral communications were more difficult for me than written communications, so I started writing essays to describe my difficulties. Several months into my speech therapy, I watched a TV special on Bob Woodruff, the imbedded TV reporter wounded in IRAQ by an IUD. At one point in the show, he used the word aphasia to describe the difficulty he had in preparing his news reports. I told my wife, my caregiver, “That’s what I have.” When I asked my speech therapist at our next session, she started apologizing profusely and said that she thought that she had used the word aphasia to describe my condition. She said that taught her a lesson that she will never forget. She vowed that in her therapy sessions from then on, she would be very careful to let her patients and their caretakers know the names of their conditions. From the beginning of human history, humans have found that they must name something to have control of it. As soon as I found the word aphasia, I discovered “Aphasia Corner” and the “Aphasia Corner Blog” (URL < http://aphasiacorner.com/blog >). Knowing about aphasia has been a big help in the past 2 years of my recovery. In one essay, I described my battle with aphasia by saying that words were behaving more like cats than dogs. Dogs come to you when you call them; cats come to you when they want to come. This essay was featured at one point on the blog “Aphasia Corner”, along with a beautiful translation by Audrey Holland into an article that is “aphasia friendly.”< http://aphasiacorner.com/blog/living-with-aphasia-2/aphasia-friendly-words-are-more-like-cats-than-dogs-274>. The shortcut to my essay on my blog is< http://wp.me/p10snX-x > Other analogies, which I have used to describe the difficulty of communicating for someone with aphasia, are trying to put jigsaw puzzles together with pieces missing, or digging coal out of the dark, damp crevices of a mine on your hands and knees. As was noted for many of us, aphasia is not our only difficulty. Nine months after the brain tumor was removed, I had four tonic-clonic seizures within a 30 minute time frame, which left me unconscious in the hospital for three days. So now I was also dealing with epilepsy. For nearly one year I had no more major seizures, just many minor annoyances, such as sensory migraines or auras. Two days shy of the anniversary of the seizures I was diagnosed with early onset Parkinson’s disease. Three months later, I had to have a pace maker implant to help control a long-term A-Fib condition. I have had no major seizures since those first ones. However, as noted I have had numerous minor auras or absences. My neurologist keeps a very close watch on my seizure medication, and asks me to keep a log of my episodes. Coordinating my seizure medications and my heart medications has been a constant challenge. My battle with aphasia has had its ups and downs. For 40 years, I lived in the analytic world of academia. Immediately after the seizures, I found myself in a metaphoric world. Analytic, sequential and deductive thinking have been a real challenge. At times the metaphoric world completely overpowers the analytic world. At other times, I catch glimpses of the analytic world in which I formerly lived. From the Epilepsy Foundation and their magazine I found that I am not alone in this transformation. Although my aphasia is classified as mild, I find it interesting and sometimes discouraging to see that there is a great deal of work searching for treatments and cures of Parkinson’s, some work on Epilepsy, but very little on Aphasia. We need to spread the word about aphasia. I would not want to put undue pressure on Gabby Gifford or Bob Woodruff. However, because of their celebrity status, the American public is more likely to listen to them at the beginning of a campaign to combat aphasia. We need to begin the campaign by using the word aphasia. We don’t need to be afraid of the word. Remember the first step to controlling something is to name it. There is nothing to be ashamed of to say I have Parkinson’s. Why should there a stigma hanging over our heads, if we say, “I have aphasia;” or “I have epilepsy.” There! I’ve said it! “I have aphasia.” I am fortunate and I thank God that my aphasia is mild. Others that I know are not as fortunate. We must do all we can to help them.

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Trying to Sleep on Half a Song

Back in July, 2011, I published two posts entitled “Bits and Pieces I and II. They dealt with the difficulties that I face when I have only a piece of something I’m trying to remember.

This posting is amplification on that idea. What happens if it is bedtime when you can’t complete the remainder of your half-remembered bit?  Recently, late one evening, just before bedtime, I started humming the tune of a Billy Joel song.  I had the melody down pat, but I could only remember the lyrics to 4 or 5 lines. I knew that those lines were not adjacent and I couldn’t fill-in the missing lines. It was too late for me to turn my computer back on. My wife, who  is my caregiver, knows if I get started on something on the computer, it is almost impossible for me to stop it, whether it is for dinner or bed. I had already stretched my allowed computer time well beyond its limit for the  evening. So I went to bed humming the tune and singing to myself the few lines that I knew (or thought I knew.) I had to go to bed with a half remembered song. It took me longer to fall asleep that night because my brain was engaged in this project of a half-remembered song that I had given it.

I find it amazing how our brain works, because in the morning I knew one line more of the song than when I went to bed and that one line contained the hint that I needed to remember the title of the song. The new line I remembered was “I go walking in my sleep.” So of course, the song was “River of Dreams” Right after breakfast, I started looking for the lyrics  to River of Dreams.” The lyrics of the first verse were the ones I was searching for:

 In the middle of the night
I go walking in my sleep
From the mountains of faith
To the River so Deep
I must be looking for something
Something sacred I lost
But the river is wide
And it’s too hard to cross
Even though I know the river is wide
I walk down every evening and stand on the shore
I try to cross to the opposite side
So I can finally find what I’ve been looking for

         Billy Joel makes no pretense that this is a Christian song. One of the later verses expresses his spiritual position. In spite of this, I am drawn to this song. It has a haunting melody and communicates the depth of soul of an individual who is searching:

 I’m not sure about a life after this
God knows I’ve never been a spiritual man
Baptized by the fire, I wade into the river
That is runnin’ through the promised land

Having found the lost lyrics, I was able to sing the song to myself all day long. That evening, soon after dinner time, there was a TV special featuring the Cathedrals quartet performing one of their signature songs, which was written by Bill Gaither, “Trying to Get a Glimpse”.The lyrics to the chorus and the last verse express some of the same longings that Billy Joel expresses. I believe that Bill Gaither is trying to say that even though we know that there is a heaven, it is natural for us to want to see and know what’s on the other side:

(Chorus)

Standing by the river, Gazing cross the raging tide
Standing by the river, trying to get a glimpse
Of what’s over on the other side, other side

(Verse)

Well I was standing on the banks
When I saw that ol’ ship take my momma home
I was standing on the banks when daddy
Crossed the river and left me all alone
Now I’m standing on the banks
Just waiting for my ride to heaven’s golden shore
And I’m trying to get a glimpse of what’s over on the
other side.

I went to bed that second night singing the lyrics to Gaither’s “Tryingto Get a Glimpse”. I fell asleep more easily and faster this second night, and woke up singing both songs.Since this episode, I have created cheat sheets that have the lyrics to both songs, and I have been able to sing them any time I desire, and I’ve had no nights of fitful sleep at least over these two songs.

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Real Meaning of Words

My latest battle with the after effects of a series of taumatic brain incidents (ruptured blood vessel in a brain tumor, subsequent surgery to remove tumor, 4 tonic-clonic seizures) is a decline in my ability to think deductively, analytically, quantitatively or sequentially and a tendency to think about everything in terms of metaphors, analogies or pictures. In searching for something that I couldn’t find , I came across this video  http://www.youtube.com/watch?v=DachRQNBGP8&feature=related that I believe expresses the real meaning of some very common words. I also don’t think that you have to live in a metaphoric world to appreciate its message. Grab a Kleenex box before watching it. Some of the pictures will make you laugh, others will make you cry.  But that’s life.

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Gazing into the Abyss – a Deux

The title of this  posting is my latest attempt at using a double entendre (a word or phrase with  two meanings). It is also an attempt to get back to my former self. As I  conceived the idea for this posting, I was well aware of the concept of a word with two meanings. I used to have a reputation as a great punster. A punster likes to play with words, and is usually considered a master of the double entendre. However, this past week I had to Google “word with two meanings” to find the phrase “double entendre.” That particular phrase was not coming to me his week.

Due to my battle with aphasia, I lost some of my ease with words. Many times when I am searching for a word, I feel like I am in a cold, dank and dark coal mine, bent over on my hands and knees crawling into the small crevices of my mind. When I get to the back of a crevice, I have to painstakingly claw through the mother lode of words that I find with a small pick and shovel for words to express my ideas. Although the images of what I want to say are very clear in my minds, the words I need to use to express those ideas are compressed into the hardened walls of my mind.

At other times,almost the opposite occurs. I find words or ideas jumping into my mind like Asian carp jumping out of a stream into boats when the stream is disturbed However, just like the Asian carp, once the words or ideas are in my mind, Idon’t know what to do with them. That’s why I carry a small notebook with me at all times, so I can write down these words and ideas, so that I can return to them when I am in a better position to do something with them.

The double entendre that I was trying to use in this posting is the phrase a deux. The first meaning of a deux comes from a French idiom for the phrase pas a deux, which means a dance for two. I believe the relationship between a patient and caregiver very closely resembles a dance for two. I will follow-up on this idea in another  posting.

The second meaning of a deux comes from the cinematic scene. Ever since the movies “Hot Shots” and “Hot Shots—Part Deux” became box office hits, Deux has come to be associated with the idea of a sequel. Thus, at this level, I mean for this posting and any other follow-ups to be sequels to my earlier posting “Gazing into the Abyss.”

In movie parlance, the word sequel can itself be a double entendre. A sequel can be a continuation of the first movie, picking up the story where the first move left it, or it can be an amplification of the first story. I intend my sequels to be an amplification of the original posting. Oops, I let the cat out of the bag–there will be more than one sequel.

As a result of the posting Gazing into the Abyss, several individuals have commented that I led them to the brink of personal abysses and left them looking into the black hole of themselves. That is definitely not what I intended. What I was trying to say in the last paragraph of the posting, was that one of the most important things I can do is stand on the edge of the abyss waving a yellow caution flag and yell: “Stop gazing into that abyss, or else it might start gazing back into you and begin to draw you into it.”

I am not alone in this task. Fortunately, through the close-knit communities of patients with aphasia and epilepsy and their caregivers, I have encountered a number of other individuals or groups that are working diligently to wave yellow flags and warn others. In several follow-up postings I will highlight two such individuals, with  blogs “Bendedspoon” and “Findingstrengthtostandagain.”

I will also do follow-up postings about two organizational or group blogs or websites. In case you can’t wait to get a head start on these last two categories, they are Aphasia Corner at <www.aphasiacorner.com> and the Epilepsy Foundation of America at <www.epilepsyfoundation.org.> (If you check out aphasicorner.com I invite you to read my essay that is featured in the lower right hand corner of the front page of one their issues and also available at <http://aphasiacorner.com/blog/living-with-aphasia-2/aphasia-friendly-words-are-more-like-cats-than-dogs-274>)