By's Musings

Parkinson's

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Update on My Health

Friends, it’s been three months since my last post. It’s been a much longer absence than I intended. Three months may actually be the longest dry spell of writing in my entire career, not just my time as a blogger. I can’t ever remember any three month interval in which I did no serious or significant writing. It has been like I am in a boat, stuck in the middle of a lake, and I lost the winds in my sails. However, it is not as if I had run out of ideas on which to write. During those three months, I accumulated a list of more than 200 potential ideas for posts. However, during this period, whenever I sat down at my computer to write, something would happen and I could never finish my thoughts. Sometimes as I started to write, I couldn’t decide on the approach I needed to take to bring out the important aspects of the subject at hand. At other times, I would get into a topic and I found it had a mind of its own. It started going in a direction I didn’t want to go and I had to shut it down.

I finally decided to step up to the plate and follow the advice that, for years, I gave to scores of institutions that were struggling in the beginning stages of assessment programs. I would tell institutions to just pick an area and an approach, and then attack it. I would also suggest that after that first task was finished, the institution should celebrate its victory. The institution should then pick another topic, and go after it.  You make progress one topic at a time.

The first topic on which I have decided to write is an update on my health. I offer this posting, not as an excuse for the recent scarcity of posts, but as a partial explanation of my pain. It is also a request for your prayers and thoughts. The past five years have clearly taught me that God is a God of miracles, and not a God of my convenience. If not for the grace of God, I would not be writing anything. I have had six doctors in six different specialties tell me that there are no scientific or medical reasons to explain why I am still walking and talking, or even breathing.

After a life of excellent health, the past five years have been a long, trying journey. During this period, I have picked up a long list of problems which began with the rescission of a benign meningioma. This list of current conditions includes a mild case of aphasia, epilepsy,  abnormal involuntary movement (tremors), disturbed sensory perception (dysesthesia), organic hallucinosis (sensory hallucinations), fatigue, attention or concentration deficit, and mental status changes. These are complicated by another somewhat smaller list of conditions that I have picked up over the past ten years, independent of the brain tumor. This list includes atrial fibrillation and obstructive sleep apnea. Taken collectively these conditions have complicated my life and forced me to retire from full-time work within the academic world.

This fall as I strove to get my proposed coaching/consulting business, Higher Ed By Baylis LLC, and this blog, By’s Musings, off the ground, I have encountered some additional complications. Since the onset of my epilepsy four years ago, my seizures have been controlled by medication. However, earlier this fall I became concerned as I experienced several incidents of sensory overload, brought about by loud noise, quickly changing lights and my cross sensory perceptions. The confluence of these sensory experiences seemed to take me to the precipice of seizures. I developed intense headaches, became nauseated and momentarily lost track of where I was.

The intensity and frequency of headaches increased throughout the early fall until they reached their peak in mid-October. Thus, for the past eight weeks, I have experienced continuous headaches. The only things that change are intensity and location. I wake up with them in the morning. They wax and wane between “four” and “eight” on the normal ten-point pain scale. The headache moves around my head, fading out in one location, as it fades in at another location. As I wrote this paragraph, I found myself engaged in a metaphysical and grammatical argument: Am I experiencing one headache and I should use singular nouns and verbs; or is it many different headaches and I should use plural forms?

In an attempt to find answers, my neurologist ordered a DAT scan to determine if the tremors were related to the possible onset of Parkinson’s disease, and an MRI to determine if there have been any changes within my head. The DAT scan was negative. The good news from that report is that the tremors are not related to Parkinson’s disease. The bad news is the test doesn’t tell them what is causing the tremors. The results of the MRI were a little less positive. There is still a hole in my head where the tumor had been. There is still scar tissue approximately the size of a dime on my right frontal lobe where the tumor had been attached. Unfortunately, the new MRI showed some swelling in the surrounding area, along with a very small new growth within the hole. My neurosurgeon says that the growth and swelling are not extensive enough to be causing my headaches and other problems. However, any abnormalities in the brain area must be watched. Thus, I will have another MRI in three months. Depending upon the results of that MRI, it could be followed possibly by additional MRI in another three months to monitor the growth and swelling.

I know that God can heal me and I pray that He will do so. However, if God decides to do something else, I pray that I will be able to stand with Shadrach, Meshach, Abednego, and Job and say, ” My God is able to deliver me from these medical problems. If he does, the glory goes to Him. However, if He doesn’t, I will still serve Him. The Lord gives, and the Lord takes away. Blessed be the name of the Lord.” Please pray this prayer with me.

16 Shadrach, Meshach, and Abednego, answered and said to the king, O Nebuchadnezzar, we are not careful to answer thee in this matter. 17 If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king. 18 But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up. (Daniel 3:16-18, KJV)

20 Then Job arose, and rent his mantle, and shaved his head, and fell down upon the ground, and worshipped, 21 And said, Naked came I out of my mother’s womb, and naked shall I return thither: the Lord gave, and the Lord hath taken away; blessed be the name of the Lord. (Job 1:20,21, KJV)

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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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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

I will admit it. I’m a fan of the TV show Criminal Minds. I know the show illustrates the seamier side of life. I don’t watch the show reveling in those things. The two things that I enjoy most about the show are: 1) the challenge of trying to put the pieces of the puzzle together along with the FBI agents in figuring out who the Unsub is and what is actually going on; and 2) the philosophical quote(s) that are sometimes thrown in during the show, and the ones that always occur at the end of the show as the agents debrief about the case. The following quote is one of the throw-ins. At one point, Agent Reid says “When you gaze into the abyss, the abyss gazes into you.” When I tried to track down this quote I found it was part of a longer quote from Friedrich Nietzsche’s “Beyond Good and Evil”

The whole quote is “Battle not with monsters, lest you become a monster. When you gaze into the abyss, the abyss gazes into you.” Most commentators suggest that Nietzsche was trying to say that if you spend too much time with evil, you will fall into evil.

I would like to suggest another possibility for those of us living with aphasia, epilepsy, and Parkinson’s, or for those who serve as our caregivers. Spending too much time concentrating on what has been taken away, can draw us deeper into the abyss of negativity and depression. I know from personal experience how easy it is to get frustrated when I can’t do things that I could previously do almost without effort. When that happens I have to shift gears and listen to the other voice that says but look at what you can do. You are a person. You are alive. You still have so much to offer others. One of the most important things we can do is to stand on the edge of that abyss and warn others so that they can avoid falling into it.

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Never Give a Person with Parkinson’s a Straight Razor or Even a Safety Razor

The seed of the idea for this post was planted several months ago when I was at a podiatrist’s office. My tremors were really acting up that afternoon, so the doctor noticed them immediately. He asked me what was wrong. I explained that it appeared that I was in the beginning stages of Parkinson’s.

As he was examining my feet, he asked me why there was a small chunk out of the end of one of my toes. I sheepishly explained that I had done that while trying to clip my toenails. He stopped his examination and in a stern voice, with an even sterner expression on his face, he said, “Don’t you ever try to clip your own toenails again.” With a somewhat more friendly voice, he asked me how I trimmed my beard. I told him that I used an electric trimmer. He smiled and almost with a laugh said,”I wouldn’t recommend a straight razor or even a safety razor for you.” I thanked him for his concern. However, the seed was planted.

It didn’t break into bloom until this past week, when I spent two days in a hospital getting a pacemaker implanted into my chest. I am very fortunate to have received one of the new MRI compatible pacemakers, because with my history of brain problems, I will have many MRI’s in the future. In fact, one is scheduled for June. The doctors and nurses went over the big items on how to care for the new type of pacemaker before I was released—like don’t go through the airport security scanners, or even let the TSA workers pass a hand scan over the implant area, or don’t carry my cell phone or pda in my left front shirt or jacket pocket. I am not supposed to lean up against a microwave oven when it is operating and I am not supposed to operate a chainsaw, which I had stopped using before the pacemaker implant. I had also been somewhat uneasy about using my table saw or jigsaw, not knowing when a tremor was going to appear.

The pacemaker instruction booklet said that I am not supposed to be anywhere in the vicinity of a large magnet. I guess that takes away the possibility of me getting a job in an automotive salvage yard, picking up wrecks with the large magnet and dropping them into the crusher.

When my wife and I got home and we started reading the fine print in the instruction booklet, we were taken back at some of the instructions. They said to keep anything that used a base charger (magnets with no direct contacts) at least six inches away from the pacemaker site. It sent my wife scurrying to get a tape measure, because my cell phone, tooth-brush and rechargeable electric beard trimmer are base charged. If I hold my head up, and don’t droop it while I am brushing my teeth, it appears that I’m safe there. I will have to remember to use my cell phone with my right ear, which may complicate matters somewhat when I need to take notes since I am right-handed.

The beard trimmer is another matter. The neck line of my beard is much closer than six inches from the pacemaker site. If I have to give up my current beard trimmer, what am I supposed do? I then remembered the helpful suggestion of the podiatrist. I quickly decided against a straight razor or even a safety razor. It looks like my wife and I are going to have to go shopping for a plug-in razor-trimmer (not the rechargeable kind). In the meantime, the stubble on my neck and cheek has started to re-grow and it itches.