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February 25, 2013 By B. Baylis Leave a Comment

They’re Baaaaack!

How many of you could identify the source of the title I selected for this post? If you said it is from the cult classic horror film Poltergiest II, you would have been correct. If you saw the movie, or even the ads or trailer, it was hard to forget the 8-year old child actress, Heather O’Rourke, holding a telephone receiver to her ear, and with a look of abject terror, screaming hysterically, “They’re baaaaack!”

Poltergiest in German mean “noisy ghost.” Traditionally, they are considered nuisance ghosts. They make strange noises and move things without really doing anything malevolent. They tended to concentrate their attacks on an individual instead of a location. In the three Poltergiest movies, the “they” were not the typical poltergiests. These poltergiests were malicious and viciously evil. However, they did seem to only concentrate their attacks on Carol Anne, the cute, young daughter of the Freeling family. Their presence in the first movie in the series, Poltergiest, was announced by Carol Anne with the equally well-used phrase, “They’re heeeere!” At the conclusion of the first movie, these evil ghosts were supposedly exercised from the lives of the Freeling family.

Anyone who follows the horror film genre knows that this pleasant thought was too good to be true. Horror film writers and directors can’t leave an innocent person or happy family alone. Most viewers easily identify with these type of characters. Thus, these victims make for a great story line and a successful film.

Early December, my poltergiests came “baaaack!” To revive another common phrase that I used in a previous post about a stubborn cat, “I thought they were gone, but they wouldn’t stay away.” My poltergiests are hallucinations and cross-sensory perceptions. For several years, I have fought with medical professionals about the term hallucinations.

Soon after my series of tonic-clonic seizures and the onset of my epilepsy, I started sensing things that I knew were not real. For example, even when I knew the wall opposite me was absolutely fixed in place, I occasionally “saw” it speeding toward me. I also knew that there was not a tiny igloo on the plain shower curtain in our bathroom. I definitely knew there was not a tiny Eskimo living in that igloo. In addition, I absolutely knew that the little Eskimo was not acting like the cuckoo of a cuckoo clock, popping in and out of the igloo regularly.

If I knew something wasn’t real, how could I label that a hallucination? However, to be able to communicate with medical professionals on their terms, I finally had to acquiesce and call my unusual perceptions hallucinations.

However, my cross-sensory perceptions are a horse-of-another color. My medical professionals do not know what to call them since they don’t fit the classical scientific definitions of dysaesthesia or synesthesia. With my cross-sensory perceptions, I am receiving sensory stimuli through the normal sensory receptors, but my brain is translating those signals into something else. For example,with musical instruments, I can hear wind instruments and horns normally. However, I do not hear string instruments. I either feel vibrations or I see images of oscilloscope waves or amplifier lights. Even though I don’t hear the music from the organ in our church, I can identify old familiar hymns from the vibrations or visual perceptions. In the past six months I have only “heard” the music from the organ once. That one occasion was the Sunday morning, the organist used a flute register to play one hymn. I believe I heard the organ that day because it sounded like a flute.

Eight months ago, my neurological and cardio-vascular medical teams got together to discuss changes in my medications that might possibly reduce my tremors, hallucinations and cross-sensory perceptions. The changes that they made seemed to have some positive effects through the late summer and early fall months.

However, Thanksgiving was a very stressful time in our family. The Saturday before Thanksgiving was the wedding of the youngest daughter of my wife’s deceased sister. The joy of the weekend was shattered when the wife of my wife’s younger brother died suddenly the day before the wedding. The funeral service for our sister-in-law was held the Saturday after Thanksgiving.

Soon after Thanksgiving, the hallucinations started up again. In addition, the cross-sensory perceptions increased in frequency and diversity, and my tremors increased in frequency and intensity. I still didn’t want to call my unusual perceptions hallucinations because I knew they weren’t real, until…they progressed to teh point where I wasn’t sure whether they were real or not. I would see something on the desk or table and when I reached to pick it up, nothing was there. I would see an animal run across the road. When I asked my wife about it, she would say there was no animal. She would suggest that I probably saw a piece of paper or trash blowing across the road. I would see birds flying past the car. My wife would say that she only saw a leaf blowing in the wind.

One of the cross-sensory perceptions to which I had become accustomed was one in which, instead of smelling the odor of a skunk, I would see the image of a dead skunk along the side of some road, even when there was no dead skunk or road anywhere in sight. However, one time I actually did see a dead skunk before I had the vision of a dead skunk. When I saw the skunk, I started smelling the distinctive odor of a skunk. When I asked my wife if she smelled the skunk, she said, “No.” She saw the skunk also and was surprised that there was no odor coming from this dead skunk.

So now “They’re baaaaack!” and they really are hallucinations. In talking with my medical team, they are considering the possibility of making more changes in my medications. I suppose this is why they call it, “Practicing medicine.”

 

Filed Under: Neurology Tagged With: Condition, Disorder, Epilepsy, Health Care

January 2, 2012 By B. Baylis Leave a Comment

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.

Filed Under: Faith and Religion, Neurology Tagged With: Aphasia, Epilepsy, Metaphor, Parkinson's, Scripture

December 2, 2011 By B. Baylis Leave a Comment

Evolution of Normal

The 12/01/11 posting on FindingStrengthtoStandAgain’s Blog, “The Day the Wind Caught Fire” <http://findingstrengthtostandagain.wordpress.com/2011/12/01/the-day-the-wind-caught-fire/#comments> is a must read for all individuals who have suffered a traumatic brain incident. The caregivers of these individuals should also read this inspiring posting.

I must admit my initial reaction to the title was that the posting was going to be about the Santa Ana winds and fires that are devastating parts of California currently. When I opened the post and saw the first picture, I was convinced that the posting was going in the direction of talking about wildfires. As I read the posting, I discovered that it was indeed about wildfires, but not the physical wildfires that scar our earth. It was about the internal wildfires which strokes or other traumatic brain incidents (TBIs) precipitate.

Those of us who have had a TBI and our caregivers know all too well about those wildfires. Tara is the epitome of a great teacher. She has had the courage to share her wildfires with us, so that we can learn from them. In this posting, she shares two lessons with us.

The first lesson relates to educating everyone about the after effects of a TBI. She correctly states each individual is different. She encourages everyone to work to see that the handbooks and guides given out to predict a TBI survivor’s outcome should not be one size fits all. We need to set our sights above those predictions, and remember everyone will progress differently. Each TBI affects a different area of the brain in different ways.

The second lesson struck home with me. Individual TBI survivors and their caregivers must have patience and take time to understand how the survivor’s “definition of normal will evolve.” I am still struggling to learn its implications in my life.

After spending 40 years in the academy immersed in analytical thinking, it was very difficult to wake up in the hospital after the removal of my brain tumor and find that I was now living in a metaphoric world. After all, metaphors were just the word pictures which you added to the end of your reports to help the uninitiated understand what you were trying to say. They were the icing that you put on the top of the cake that you baked in your analytical, sequential, deductive oven.

I have tried very hard to return to the analytic world and at times I find myself visiting it. I have not yet been able to make the warp jump into a more permanent return to the only world that I knew for 50 years. However, as I explore my new metaphoric world, I have found some very interesting things.

In James Geary’s book I is an Other: The Secret Life of Metaphors and How It Shapes the Way We See the World,” I discovered that “metaphors were a way of thought, long before they were a way with words.” From my study of learning theory, I should have known this. We learn by tying new and unknown things to old and known things. Metaphors are a comparison of something unknown with something we already knew. Understanding this, life in a metaphoric world became more tolerable. My normal evolved. I haven’t stopped striving to regain pieces of the analytic world I left behind, but I can now live peacefully in my new world and honor it.

Filed Under: Neurology Tagged With: Caregiver, Epilepsy, Metaphor

November 30, 2011 By B. Baylis Leave a Comment

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.

Filed Under: Faith and Religion, Neurology Tagged With: Aphasia, Communication, Condition, Disorder, Epilepsy, Metaphor, Parkinson's, Therapy

October 16, 2011 By B. Baylis 7 Comments

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.

Filed Under: Neurology Tagged With: Aphasia, Communication, Epilepsy, Knowledge, Metaphor, Parkinson's, Truth

October 15, 2011 By B. Baylis Leave a Comment

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>)

Filed Under: Neurology Tagged With: Aphasia, Caregiver, Communication, Epilepsy, Metaphor

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