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The First Week at Home After My Week in the Clinic

The First Week at Home After the Week

Of Observation in the Neuroscience Clinic;

My Auras Spread from Visual to My Other Senses

In my first week at home after the week in epilepsy clinic, I had no experiences that I would label as major seizures. There were a few minor episodes. These consisted of a few instances of confusion or momentary absences. Also after looking at a bright light, I would see the fuzzy yellow donuts that I mentioned I saw during my stay in the clinic. After a little research I discovered that many people see these donuts. They even have a name. They are called Weiss Rings. On occasion during this week, the Weiss Rings would start acting like the round Microsoft cursors, with the rings spinning that indicate the computer is processing something.

At other times during the week, I saw things that looked like the Honey Bun sweet rolls that you can buy at convenience stores. Every time I would see the Honey Buns, I was hungry. Here is a “Chicken or egg question.” Did my hunger trigger the images or did the images make me hungry?

Another day after lunch as I settled down to take an afternoon nap on a full stomach, the multi-color whirlpools that spiraled down to their center came back, changing colors as they spiraled. I think I may have just solved my “chicken or egg dilemma.” The whirlpools lasted about fifteen minutes and then they started to fade away. However, they didn’t fade away completely, they transformed into multi-colored conch shells with their distinctive spirals visible beneath the main body of the shells. It would appear that hunger helped induce the aura of a food item.

Oops–back to the drawing board on that one. Two mornings in a row I woke up to food-related auras, and I was not particularly hungry or thirsty for the items in my auras. One morning I woke up smelling hot dogs with chili, mustard and onions. You know that smell that tells everyone what you bought as you walk away from the sidewalk hot dog vendor with a steaming dog loaded with chili, mustard and onions. The second morning, the first thing I saw as I awoke was the lights on my CPAP machine. As I looked at those lights, they reminded me of the shape of a Styrofoam cup. When I took off my CPAP mask, and started swallowing to get the dry sensation out of my throat, I tasted strawberry-lemonade. Neither of those items, a loaded hot dog or strawberry-lemonade, would come anywhere close to my idea of a good breakfast. I may have been thirsty and hungry, but not for those items at that time.

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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.

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A Week in an Epilepsy CLinic

My Week in an Epilepsy Center

By Baylis

I gave them a scare when I arrived early on a Friday morning at the epilepsy clinic for a week of testing.  My wife, Elaine, had pulled up to the front door of the clinic to drop me off and give the car to the valet parking attendant. I grabbed my laptop brief case and a brief case with three books in it. The clinic had said to bring a laptop and reading materials because it can get boring sitting in the same room for a week without anything to do. Elaine grabbed my suitcase, duffel bag and CPAP machine for my sleep apnea. We took the elevator that was in the lobby. Elaine wheeled the suitcase down the hall to the check in desk and I carried my laptop and books. When we got to the check in desk, I was out of breath and in some obvious, but not serious distress. They made me sit down and checked my blood pressure and pulse. You guessed it. I was in A-Fib. My blood pressure was 150/110 and my pulse was 140. They called a doctor who made me lie down. After lunch and a short nap my blood pressure was 120/80 and my pulse was 110, but I was still in A-fib. My heart is extremely strong, my arteries are clear. It’s just that my heart doesn’t have any rhythm.

One morning during the week at about 2:30 AM bells and alarms started sounding off like fire alarms. Two nurses came running in and I asked them, “What’s up?” They said my blood pressure had dropped to 80/40 and my pulse had dropped to 55. By morning they were back up to 110/80 and 95. I didn’t have any official seizures while in the clinic for the week, just a few events that the doctors said left some tracks on the EEG but not where they thought they should be. I haven’t had any more impressionistic visions, but I did see spots, like those when you look at a bright light. For years when I looked at a bright light I would see fuzzy yellow donuts. This time they weren’t donuts and the spots were coming and going more frequently. One morning I woke up and looked up to the ceiling where the infrared camera was located. The camera was on because I could see a faint red glow. When I looked away I saw spots that looked like Mickey Mouse heads. They were large solid disks with two smaller solid disks, one at each side of the top of the larger disk. However, the disks weren’t black or gray. They were a smurf-blue in color. They lasted until I ate and took a nap. When I woke from the nap, and looked out the window, the spots returned but this time they were elongated donuts. After a while I recognized them as oval race tracks with the track one color and the infield another. The “head” of the clinic said that the EEG activity tracks were not where normal vision tracks would have been, so she had two guesses. One was side effects from medication. One of my anti-seizure medications is very effective against seizures but is known for strange side effects. She said that it was also possible that my optic nerve was displaced. She said that any one of the five traumatic events that I have gone through could have moved my optic nerves. The growing of the brain tumor might have moved them. The explosion of the blood vessel in the tumor could have scrambled things around. The filling of my cranial cavity with blood could have rearranged things. And finally although they try to be very careful in surgery, either the surgery or the aftermath of the surgery when the brain tries to return to its normal place could have displaced some nerves.

The Head of the clinic is “consulting” with my regular neurologist about switching me to different medication. In the meantime, each new day seems to bring a new set of spots. One morning, it looked like I was watching an aquarium. I didn’t see any fish, but there was a whole trail of clear air bubbles rising all across my field of vision. I had one other “event” in the clinic. Again it didn’t show up on the EEG as a seizure but it was strange. One morning, I woke up and hit the event button that they had given me and called the nurse. She came running and asked, “What’s the matter?” I pointed to my forehead. And the Nurse asked, “Do you have a head ache or pressure in your sinus area?” I said, “No, it’s a vacuum.” The nurse asked, “Does it feel like a vacuum cleaner is stuck to your forehead?” I replied, “No inside my head; my sinus area feels empty.” The head of the clinic said that was a new one for her. I told her I was afraid to tell anyone. I didn’t want it get out that I felt my head was empty. OOPS, did I just tell you? Promise you won’t tell anyone”.  Besides I have proof that there is something up there. The MRIs show that I still have at least half a brain, even if it does have a few scar tissues.

Today when I went with Elaine to the store to pick up something, the sun was very bright and reflected off a car in front of us. This time the spots were purple and orange whirlpools.

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Living in a French Impressionistic Painting

Living in a French Impressionistic Painting

By Baylis

 The past week has been bumpy. No full-blown seizures, however, a number of unusual things have been occurred. One morning I woke up at 7:00 AM. I got up and turned on my computer and wrote a response to a newspaper article that had appeared in paper a couple of days earlier. When I finished writing the response, it was 8:00 AM. I was a little tired and since my wife was still sleeping, I went back to bed and fell asleep. Sometime later I woke up feeling very well-rested and when I looked at the clock it was 5:25 AM. As I stirred my wife asked why I was getting up so early and I told her about the apparent time differential. She said that I must have been dreaming. I told her if I was dreaming I was sleep writing because I had a decently written essay on my computer responding to a newspaper article. When I checked my computer the essay was there.

At least three times in the past week, I have “awakened” from a nap or a zoning time-out and found myself living in a French impressionistic painting. What do I mean? Most everything further than 20 feet away had no definition to its edges. I could distinguish what it was, but it was not sharp. For example, this past Sunday morning on our drive to church, looking out my van window I felt like I was looking at impressionistic painting. I could tell that barns were barns but I could not be sure where the barns stopped and the outbuildings began. They all ran together.  After we got to church and I looked at the flowers on the platform in church, I could not tell when one flower stopped and another started, but I could tell that they were flowers. However, in our church we use a video projector with the words to the songs that we are singing. It was strange; I could read the words clearly. They seemed to be sharply defined. But the background pictures were fuzzy, just like an impressionistic painting. After church, we went home. I ate lunch and turned on a football game. We don’t have an HD TV, but when the camera was on the players and the game, everything was sharp. When it panned across the crowd, the impressionistic images returned. I feel asleep “watching” the game. When I awoke from my nap, having missed the entire second quarter of the game, the impressionistic images were gone. Everything had returned to normal and all images were distinct and sharp. When we went back to the evening service at church, I could distinguish clearly the barns and outbuildings on the way to the church. I could also see the flowers on the platform distinctly. I could also tell that they were standing in water in clear glass bottles that I had completely missed earlier in the day.

Are these mini-seizures or the side effects of medication? To really determine what’s going on, my neurologist wants to catch me during one of these episodes, so I am now scheduled to spend a week in a local neurological-science center for constant monitoring. After a week of being a lab rat I may have some more stories to tell. Stay tuned in for those stories.

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WHAT I KNOW IS RELEVANT

Living with Aphasia

What I Know is Relevant

By Baylis

This post was inspired by a response to an article that appeared in the August 31, 2010, daily e-edition of the Chronicle of Higher Education, entitled “As Literacy Declines, Faculty Members and the Media Share the Blame.” It can be found on the CHE website at http://chronicle.com/blogPost/As-Literacy-Declines-Faculty/26619. The general tone of the CHE article reminds us that for years it has been fashionable in educational circles to decry students’ lack of communication skills, both verbal and written. However, the comment that really got under my skin was one which stated, “If you can’t communicate what you know, it is irrelevant.” My first reaction was to scream “WHAT I KNOW IS RELEVANT.” My comment, addressed to the individual referenced above, was “I’m sorry that I can’t communicate what I know to your satisfaction. However, right now that is due to something that is beyond my control. I suffer from Aphasia as a result of a traumatic brain episode. Please work with me and perhaps we can both learn something.”  My second reaction to the article and other comments was to remember a song that I used to listen to on the 8-track tape deck that I had in my old pick-up truck. I could still remember some of the words of the chorus of Joe South’s hit: “Hey, before you abuse, criticize, or accuse, walk a mile in my shoes.” I looked up the lyrics of the song and I was pleasantly surprised at the lyrics of the first verse:

“If I could be you and you could be me for just one hour

If we could find a way to get inside each other’s mind

If you could see you through my eyes instead of your ego

I believe you’d be surprised to see that you’d been blind.”

This is the lesson that I would like others to learn. As we interact with others, before we summarily dismiss them when they have difficulties in communiation, we need to learn where they are, and from where they came. They may have legitimate communication challenges such as aphasia, dyslexia, or some other deficiency. We need to get to know them so that we can understand them and walk a mile in their shoes. We may be surprised at what we can learn from each other.

On my education blog, I am posting an essay with essentially the same ideas as the ones in this posting, but directed more specifically to educational settings. In that posting, I will suggest that some of my educational colleagues will accuse me of not understanding how important it is to judge all students against the same standard. Let me assure you that I have walked many miles in those shoes. I used to believe that all students had to be tested under the same conditions. I have since walked several miles in the shoes of a challenged individual. Aphasia is a communication deficiency. It does not affect intellect. It generally only affects the ability to communicate. This experience has completely changed my view of accommodations in educational settings. I now see how important they are. Institutions and individual faculty must not overlook or ignore appropriate accommodations for the students who need them. So sufferers speak up for yourselves and demand your rights. If you can’t speak up for yourself, your caregivers have a responsibility to be your spokesperson. Make sure that get all of the opportunities and accommodations that are due to you. It is not only your right, it is the law. However, I have also come to another conclusion that I will suggest in an upcoming blog, “It is impossible to legislate commitment. The best you can hope to get from legislation is minimal compliance.” Until the minds and hearts of the general public are changed, people with challenges will continue to be treated like second-class citizens, and most of the relevant knowledge they possess will be wasted. It took a traumatic brain episode to bring me to my senses. I hope and pray that others do not have to go through my experience, to realize what they are missing.