By's Musings

Neurology

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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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Signs, Signs, Everywhere Signs

Those of you who have followed my postings know that my wife and I have just completed a 650 mile move to be closer to our children and their families. This necessitated finding a whole new set of doctors. As I made the rounds of my new doctors, signs in their various medical venues reminded me of the 1971 hit song by the group Five Man Electric Band, “Signs, Signs, Everywhere Signs.” For those of you who are either not old enough to remember 1971, or those of you who are too old to remember 1971, here is a download of that memorable song:

  http://www.youtube.com/watch?v=oeT5otk2R1g

 I was particularly fascinated with three signs. The first two of these signs were located in public or semi-public bathroom facilities. They reminded me of the pair of lines from the song:

“Blocking out the scenery; Breaking my mind.
Do this; don’t do that!  Can’t you read the sign?”

I can’t say the signs were blocking out the scenery. However, they were definitely “breaking my mind.”

One of the signs was in a combination shower and restroom located in a testing facility in a hospital, used by both in-patients and out-patients. A computer generated sign on an 8½X11 sheet of plain white paper was taped to the inside of the exit door. In bold print it said:

 “Patients please dress or cover-up before leaving the shower and returning to your room.”

 This sign gives new meaning to the phrase, “Just trying to cover your rear end.”

 The second sign was in the public men’s room located off the lobby of a doctor’s office. The sign was brown plastic with white engraved letters. The sign was firmly attached to the ceramic tile wall, behind the only toilet in the room, by what appeared to be clear glue. Residue of dried glue had oozed out from behind the sign at the top, bottom and both sides of the sign.

 The white etched letters of the sign read:  “Do not flush anything down this toilet except toilet paper.”

 Apparently one of the doctors or nurses realized the problem this command was posing. Someone had taken a piece of white surgical tape and stuck it to the wall below the sign. Then they had taken a bold-tipped Sharpie and scribbled on the tape, “What about poop?”

The third sign to which I was drawn was posted in the waiting room of one of my new doctors. It presented a quality of life Likert scale. For many years, I have used Likert scales in surveys to gather information, but I had never seen this particular Likert scale. The idea behind a Likert scale is to use points on a straight line continuum or a sequence of numbers to indicate one’s feelings about a particular topic. One of the most common Likert scales is the following 5-point scale:

  • Strongly Disagree
  • Disagree
  • Neutral-No Opinion
  • Agree
  • Strongly Agree

The respondent is asked to blacken the appropriate circle to indicate his or her feelings toward a particular statement such as:

 “President Obama is doing a good job managing the United States economy.”

The sign in the waiting room that fascinated me was asking patients what they thought about their quality of life. The suggested answer scale was a 7-point Likert scale: “

  • Delighted
  • Pleased
  • Mostly Satisfied
  • Mixed Equally Between Satisfied and Dissatisfied
  • Mostly Dissatisfied
  • Unhappy
  • Terrible

Which circle would you blacken to describe your quality of life?

This sign brought me back to one verse from the Five Man Electric Band song about signs. 

“And the sign said, “Everybody welcome. Come in, kneel down and pray.
But when they passed around the plate at the end of it all, I didn’t have a penny to pay
so I got me a pen and a paper and I made up my own little sign.
I said, “Thank you, Lord, for thinkin’ ’bout me. I’m alive and doin’ fine.” 

Returning to the question posed by the sign in the doctor’s office, which circle would you darken if I asked you about your quality of life? For my own life, I would have to say:

“Mostly satisfied—Thank you, Lord for thinkin’ about me. I’m alive and doin’ fine–most of the time.”

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Never Take a Loved One for Granted

Within the past month, I learned several lessons from my 14-year old granddaughter. She shared with me an essay that she had written for her ninth-grade English class. The assignment was to write a memoir. I will admit that it brought tears to my eyes. Her essay showed the importance of family and the role that love and respect within a family should play. It emphasized the fact that the little things we do can make a big difference.

This may be the biased opinion of a grandfather who believes his granddaughter is one very special young lady, but I am convinced her essay exhibited a maturity far beyond what most of us exhibit, no matter what our age is. It also illustrated lessons that I have attempted to teach within the academy for 40 years that far too often have fallen on deaf ears.

With the permission of my granddaughter and her teacher (since it was an assignment), I take this opportunity to share the Memoir here at By’s Musings. I first present the essay and then will make some comments about it, speaking as a very proud grandfather.

Taken for Granted

               Most people think that nothing will happen to them or the ones they love. I learned the hard way that it can. It was back in 6th grade when I was eleven years old. I was a very outgoing person and I took my grandfather for granted, because I thought that he was always going to be around. He has always been a great grandfather and he was always the first person I would call when I would hit a homerun at softball or if I made a new team. I would only get to see him three or four times a year when my grandparents would come to Pennsylvania from Michigan. Though our visits were infrequent, we always had a great time when they came in.

I remember answering the phone and the person said that they were my grandmother’s pastor and that they were looking for my mom. I was so confused and had no idea what they were talking about. I walked into the kitchen and said “Mom, Grammy’s pasture [sic] is on the phone.” When I was eleven years old I did not know that a preacher was also called a pastor. My mom just stopped and looked at me like I was stupid and took the phone. I went upstairs to get in the shower, and when I came back down she was crying her eyes out. I asked her what was wrong, and the only thing she told me was that my grandfather was in the hospital. My mom called her sister, and she said that they think that he had a stroke. Right after she got off the phone she called my dad, and he came home right away. My mom wanted to go out to Michigan right away, but there were a couple of problems. PSSA testing had just started for me that day and we did not know how long we would be staying in MI. My mom and dad both had to work, we had nowhere to put my dog, and Michigan is over 13 hours away.

Missing work and school were the least of our problems. We decided that my dog would go to a friend’s house. We got everything packed up, dropped the dog off, and picked up my aunt. Then, the longest car ride to Butterworth Hospital out in Grand Rapids, Michigan began.

I remember walking in and I just started to cry. I walked over to his bed side and said, “Hey Pop-pop what’s up?” and I can remember his exact words “The sky.” At that point everyone started to laugh. My grandmother explained to us that he was in a meeting at work, after the meeting he put his head down on the table and one of his co-workers asked him if he was okay and he never answered. They immediately called 911, and when they got there they thought he had a bleeding stroke. We went to my grandparents’ home and one of my grandmother’s friends made us a casserole for dinner and left it on her door stoop.

The next day at the hospital they did a CAT scan and found out that he had a brain tumor the size of a racquet ball, and it caused some hemorrhaging. They wanted to do surgery immediately the next day. My grandfather had hair, but he was bald on top of his head. They shaved all of his hair off and he looked totally different. The day he had his surgery was the longest day ever. My family and I sat in the waiting room playing Apples to Apples, sleeping, and reading to past the time till my grandfather got out of surgery. We played Apples to Apples, because I had it in the car for from the long car ride.

When he finally came out of surgery and we could go back and see him, he had gauze wrapped around his head. He had staples in his head and when I saw him I almost got sick. We stayed for a couple more days, but we had to leave and get back home. I did not want to leave. I was afraid that he was not got going to pull through it.

My grandfather has never fully recovered from this whole incident. As a result of the surgery he has aphasia which is a condition that causes him to forget words that people take for granted in our everyday life. He cannot walk without a cane or for long periods of time. Since the whole incident he has also been diagnosed with Parkinson’s disease, which causes him to shake a lot. My grandfather before the brain tumor was a very self-sufficient person, but now he must rely on my grandmother to do most things for him. My grandfather was very upset after he found out that he is not allowed to drive any more or return to work.

This affected my family as well. When we got home every time the phone would ring we would be scared that something happened to him. It really affected my grandmother as well, because she cannot do everything by herself so they will move back to Pennsylvania in April of this year.  Anything can happen to the people that you love, so make sure that they know that you love them and never take them for granted.

.       The important lesson that we must all remember is the last sentence of her memoir. “Anything can happen to the people that you love, so make sure that they know that you love them and never take them for granted.”  I don’t think that she is being morbid in suggesting that whenever we see a loved one, it may be the last time we will see them. I believe that she is teaching us to make sure that we show our love to each other whenever we can, because we don’t know when that opportunity will be taken from us.

The lesson noted in the opening paragraphs of this posting I suggested fell on deaf ears in the academy is that everyone regardless of their age or status has something to offer. I believe that knowledge consists of content, skills and values. No one person has a monopoly on knowledge. If even one member of a class is prevented from offering their insights to the whole class concerning thoughts related to the subject of the class, everyone, including instructor and students, is short-changed. A complete education is facilitated by an open class in which everyone participates as both instructor and student. The role of the professor is not to serve as dictator, but to serve as a facilitator and guide.

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Random Events, Conditions, Disorders, Diseases: Part II

I finished Part I of this post making two claims.  The first claim was that the labels given the circumstances of patients can affect the patients’ perceptions of themselves. The second was that those labels can affect the treatment offered to the patients. In addition to those two claims, I asked two questions. One of the questions was, “Is health care a public or private good?”

To those of you who are saying, “That’s a trick question,” I will admit that it is definitely a trick question. The trick spins on two pivotal points. The first pivotal point is how one understands the word “good.” If one takes it as meaning “benefit,” health care can and should provide a private benefit to individuals. I believe individuals should have the opportunity to enjoy their lives completely. If individuals are healthy, they are enabled to contribute as much as they can to society. The more individuals benefit society, the more society benefits.

I know the second pivotal point making this a trick question will get me in trouble with many readers, because I am going to bring the discipline of economics into the mix. Some of you are already asking, “How can you put a monetary value on a human life?”

Before I sink too deeply into this quicksand, I will tell everyone that I value everyone’s life, just as John Donne wrote in his essay, Meditation XVII,

“No man is an island, entire of itself…never send to know for whom the bell tolls, it tolls for thee.”  If one person dies or is incapacitated, that takes away a little piece of me. Most people are more familiar with Donne’s essay translated into a poem that Ernest Hemingway used in the flyleaf of his novel, “For Whom the Bell Tolls.” In this sense, health care is of social benefit.

Although many political careers have been lost or almost lost trying to traverse this quicksand blog, I’m not a politician and I believe that I must begin wading through the quicksand. Health care, just like everything else in today’s world, has expenses related to it. Expenses and money bring the discipline of economics into the fray. Economics defines a social good as a benefit with two properties.

The first property is known as “non-rivalry.” This refers to a good that all can enjoy in common in the sense that each individual’s consumption of such a good leads to no subtraction from any other individual’s consumption of that good. Health care on the surface may appear to be a non-rivalry good. However, on closer inspection it is not hard to become convinced that there is not an inexhaustible supply of doctors’ time, hospital space or medications.

The second property is known as “non-excludability,” that is, it is impossible to exclude any individuals from consuming the good. For health care, it is easy to see that certain individuals can be excluded.

Since health care fails both the non-rivalry and non–excludability tests, health care can’t be classified as a social good. Does that make it a private good? The major problem with labeling health care a private good is that the overwhelming majority of individuals can’t afford the cost of treatments associated with health care.

In addition, even if all the individuals who need a certain type of health care were to pool their resources, they couldn’t possibly pay for the research and development necessary to further the fight against their condition, disorder or disease. R & D for health care must be considered something beyond the communal efforts of those directly affected. R & D requires a social effort.  In Part III of this post, I will highlight a number of those R & D efforts as well as some communal efforts that attempt to help patients and their caregivers cope with their day-to-day problems.

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Random Events, Conditions, Diseases, Disorders, Part I

Random Events, Conditions, Disorders, and Diseases: What, if any, are the differences between these terms? The term “random event” carries with it the connotation of a single event for which an explanation is difficult, if not impossible. The term “condition” carries the connotation of repeated events, which may occur with regularity or in a predictable pattern. The term “disorder” carries the connotation of a condition which is caused by an identifiable internal malfunction, or design flaw. The term “disease” carries the connotation of a condition which is caused by an externally introduced agent.

  Why am I concerned? Should I be concerned? Should others be concerned? The human side of these questions includes the human psychological need to name, identify and control internal and external events. However, it also includes the practical side to these questions because insurance reimbursement almost always requires the identification of a problem. Insurance companies are usually hesitant to reimburse for the treatment of a “random event.” I have been questioned on coverage until the random event could be identified as part of a condition or disorder.

I began thinking about this post in relationship to my concerns and questions connected to my recent battles with health, communication, physical abilities, and mental capabilities. However, as I have talked and exchanged emails with others, I have found that I was not the only person to ask these same and related questions. The article, “Branding a Soldier with Personality Disorder” in the February 25, 2012 edition of the New York Times, raises the related concern of a hierarchy among disorders. The article may be found at <http://www.nytimes.com/2012/02/25/us/a-military-diagnosis-personality-disorder-is-challenged.html?_r=1&nl=todaysheadlines&emc=tha2 >

This hierarchy among random events, conditions, disorders and diseases affects the coverage and treatment that one can expect to receive. Senior moments receive less attention than aphasia. Senior moments receive less attention than dementia or Alzheimer’s disease. Tremors receive less attention than Parkinson’s disease.

With these states of affairs stacked against an individual, it is imperative that individuals and their caregivers be prepared to insist upon and fight for the best and most appropriate treatment available. Given the current fiscal model under which medicine operates, the best and most appropriate treatment available may not be the first option offered to patients and their caregivers, if any option is offered at all.

Please understand that I am not condemning the medical enterprise for this state of affairs. I have spent 40 years in higher education. It has its own difficulties that many believe begin with a broken fiscal model. This often means that the best and most appropriate education is not always offered to students. At the risk of starting a philosophical war I invite responses to the question: “Are education and medical care, a public or private good?”

 

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Reading through the Week–Part I: Introduction

In the January 2012 issue of Christianity Today Alan Jacobs, Professor of English at Wheaton College and author of the recently released Oxford University Press book, The Pleasures of Reading in an Age of Distraction, is interviewed by John Wilson, the Books and Culture editor for CT. The title of the interview “Don’t Worry, Read Happy” is a light hearted attempt to encourage CT readers to expand their horizons for reading beyond work related assignments and to read for enjoyment. The subtitle of the interview, “Stop Fretting Over What You Need to Know, and Enjoy Those Books that Bring Delight,” is a quote from Jacobs that interviewer Wilson culled from the interview.

As I read the interview, I was reminded of two of my previous blog postings that I entitled, “Relief through Reading.” I went back to look at them. I was extremely surprised that it has been almost a year since I published those posts. As far as my reading for the past year, it has definitely been up and down. I have been able to read a few books for what one could the sheer enjoyment of it. However, most of my reading has been focused on my writing projects.

The title of one book, The Curious Incident of the Upside Down Dog, might suggest light reading. It was anything but light reading. It was a bio-novel, written from the perspective of a young adolescent boy suffering with Asperger Syndrome who discovers his neighbor’s pet dog killed in her backyard. Since the neighbor finds him with the dog and “she considers him strange,” she accuses him of killing her pet. Since the boy loved the dog and wanted to prove his innocence and find the real culprit, he begins an involved search for the real perpetrator. As the boy delves deeper and deeper into this mystery, we are drawn into the mind of an autistic youth, the inner workings of two dysfunctional families, the awful truths from which both parents and neighbors tried to insulate this innocent autistic boy, and the boy’s herculean efforts to find that truth, no matter what it meant for him and his family.

I selected this book because I knew from the advertisements it dealt with Asperger Syndrome supposedly written from the inside. Since much of my writing has attempted to write about difficulties from the inside of those difficulties, the first reason I selected this book was to get another example of how this type of writing might be done, definitely not reading for the pleasure of entertainment.

The second reason for selecting this book was because of an essay that I wrote more than two years ago, but have not yet published. In that essay, I suggest the behavior of many college and university faculty members was consistent with the behavior of autistic adults. I was hoping I could glean some guidance from this book on how to write about abnormal behaviors without criticizing those individuals for behaviors that were beyond their control.

I must admit that I didn’t get everything that I wanted from the book. It was a polemic about how adults treated this boy. The best message that I could take away from the book was that college administrators have a great responsibility to monitor, hold themselves and faculty members accountable for their behavior, and assist faculty members when they seem to be straying from acceptable behavioral norms.

I started this posting with the idea of writing another light encouragement to read. However I started to approach this in a manner that went against the advice of Professor Jacobs. My first idea was to suggest a reading plan that hit each day of the week. I was working on this idea even before I saw the Jacobs interview in CT.

In “Reading Through the Week, Part II, I will outline the reading plan that I developed for me. It is a plan that includes 7 books that contain the names of the days of the week. This book list is not for everyone. It was a plan and a book list to which I was attracted. I learned something from each of the books. I found some of the books to be a challenging read. Each of the books brought me enjoyment at some point during the reading. I found this exercise has helped me to return to an activity that I enjoyed during my childhood, reading for reading’s sake and not just to complete an assignment.