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Neurology

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Near Disaster Adverted

After this weekend, I may be off-line for the better part of a week or maybe more. On Tuesday, I am having a pacemaker implanted. My cardiologist finally said, “it is time to fish or cut bait”. The invention of an MRI compatible pacemaker and a near disaster this past Sunday made the decision to go ahead with the pacemaker easy. For the first time in months, I had what could be clearly identified as a seizure. Although the seizure itself was very mild, the results frightened my wife. We were ready to go to church, when I remembered that I had left my  ideas notebook that I try to carry at all times (because I never know when I will get an idea).  upstairs on our head board. So I went upstairs to get it. Our bed is located in a small alcove in our bedroom. So I walked between the bed and the outside wall up to the head board. I picked my notebook and pens and put them in my shirt pocket. When, I turn around and start to walk back to the foot of the bed, I found that I couldn’t walk. All I could do was shuffle my feet which is not atypical of Parkinson’s patients. As I slowly approached the foot of the bed, I stopped shuffling because my right foot wouldn’t move at all. In frustration in a moment of an imposed application of will, I forced my right foot to move. With that exertion, I lost my balance and started to fall backwards. In that fall I sat in our second story bedroom widow breaking the glass. I grabbed the window frame so that I didn’t go all the way through the window. My wife, Elaine,  heard the glass break and yelled, “What did you do?” I yelled back, ”I broke a window.” By that time Elaine was running up the stairs yelling, “How did you do that?” All I could think of was to say, “I sat in the window.” To which Elaine asked, “You did what?” I couldn’t think of anything quick enough to respond to her, so she kept yelling, “Are you okay?” I didn’t say anything, but waited until she got to our bedroom. She looked at me sitting in the window with my hands still gripping the window frame and she yelled, “What happened.” I tried to calmly explain what had happened. Now that I reflect on this scene, according to the TV commercial, this would have been a perfect time for a Twix to give me time to think of a good answer that I didn’t have on the spur of the moment.

Elaine went about cleaning up the mess on the window sill and floor. Apparently our mini-blinds and my Sunday clothes kept me from getting cut by the chards of glass that were everywhere. Since this occurred on a Sunday morning and it has rained or snowed every day since, we now have a boarded up window in our bedroom until we can have someone come and put in a new window pane.  In our old house with its old windows, the glazing is on the exterior side of frame, so the glass pane must be installed from the exterior. The boarded up window is a constant  reminder to  us of God’s care.

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Living with Epilepsy, Aphasia and Parkinson’s is like Happy Hour at a Nascar race

Sometimes I feel that living with aphasia, epilepsy and Parkinson’s is like driving a NASCAR race car. No, I’m not talking about living in the fast lane, going 200 miles per hour. I am thinking more  about what goes on during “Happy Hour.” For those not familiar with NASCAR terminology, at most races between qualifying, where the starting positions for the race are fixed, and the race itself, there is one final time of practice that is called “Happy Hour.”  For those of us with aphasia, epilepsy and Parkinson’s, sometimes I think it would be nice to have  a Happy Hour when we could run through a practice and find out where we operate best before going out in the race of life.

 Why is this practice time called “Happy Hour?” First of all, it usually lasts one hour. That part makes sense. Why happy? For many of the drivers and crews that work on the cars it is not necessarily a “happy” time. However, since it is the last time that teams can see how their cars and drivers are going to react to racing conditions on the given track, it is a frenzied time. Drivers try different lines (in racing terminology, normally called “grooves”) to see where on the track their cars can get around the track the fastest. Since many tracks are not flat, but highly banked, contrary to general intuition the fastest way around a track is not always the shortest distant around the track. Sometimes the fastest way around the track is actually the longest way around, where you drive as close to the outside wall as you can. If you do this correctly the combination of centripetal force and friction between the car’s tires and the track’s surface helps hold the car in place and you don’t have to use your brakes as much if you were running at the bottom of the track, and you can maintain full speed all the way around the track. Sometimes drivers will find because of the way their cars react to track conditions, the best line for them is the high line on two curves, and the bottom line on the other two curves. Happy Hour is the time when you can try these things out. If you watch Happy Hour on television, this is what the announcers are indicating when they say the drivers are moving all over the track. They are trying different lines to see which one is best for them in each part of the track.

 It would be nice for those of us with aphasia, epilepsy or Parkinson’s to be able to try different lines on the track of life to see which line works best for us.

 Happy Hour is also the last time before the race that the driver can communicate operational problems to the crew. The following are two hypothetical conversations between a driver and a crew chief during happy hour. 

         CREW CHIEF:  What’s wrong with the car? You’ve slowed down noticeably on the last two laps.

         DRIVER: This car is a piece of junk. It won’t turn going into or coming out of the corners.

         CREW CHIEF: Bring it in and we’ll change tires, spring rubbers and adjust the sway bar

         DRIVER:  Okay, I’m coming in next lap.

The driver brings the car into the pits area and the pit crew changes tires (Cars normally operate best on new tires); spring rubbers (taking out or putting in spring wedges between the coils in the suspension springs will change how the car reacts in the corners of the track, or adjusting the sway bar which change how well the front end and the rear end of the car are coordinated as they go around corners). This is similar to a medical team adjusting medication to help improve performance. 

Second hypothetical conversation over the two-way radio in the car:

         CREW CHIEF: What’s wrong with the car now? You were the slowest car on the track that last lap.

         DRIVER: I don’t know. The engine feels like it is missing (slang for one or more spark plugs is not firing).

         CREW CHIEF: Okay bring the car into the garage and we’ll run the diagnostics on the engine.

         DRIVER: Okay, I’m there the next lap. 

The driver pulls the car into the garage and the pit crew plugs in all the diagnostic equipment and runs the tests. Sometimes the tests show something wrong and other times they don’t, or sometimes they indicate something is wrong but don’t pinpoint the problem. That sounds very much like what happened to me the last time I was in the hospital for observation. The tests indicated problems but couldn’t pinpoint the exact nature or location of the trouble. What do the experienced crew chiefs do in this situation? They rely on their experience and make changes to the car that have helped other cars in similar situations. What do experienced doctors do? They rely on their experience and make changes to medications or treatments that have helped other patients in similar situations.

One very important component of this process of “fixing a car during Happy Hour” that I have not heavily touched on is communications. The driver and the crew chief (the patient and doctor) have to be able to communicate and understand what’s wrong and whether “fixes” worked fine , didn’t go far enough or went too far. 

Living with aphasia, epilepsy and Parkinson’s can be like experiencing happy hours at NASCAR races. The best teams that communicate well usually do well in the race, and often win.

 

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Bits and Pieces Part I

As I have stated in previous posts, one of the reasons that I started this blog was requests from professionals working with persons with aphasia and their care givers to describe what aphasia looked and felt like from the inside. This post addresses one specific question that I was asked. The question was: “How do I proceed when I face the dilemma of not being able to think of the right word or not being able to put together my thoughts on a particular topic?”

Let me try to explain the process I use by giving you two examples. The first example occurred last week and I will describe it in this post. The second example happened several weeks ago and I will describe it in another post.

Now to the first example: I woke from an afternoon nap with a melody running through my mind. I knew it was a song from the 60’s because I remember playing it as a teenager on my piano in my parents’ basement. Although I could remember playing it and hearing it on folksy radio stations of the era, I just could not remember the title or really any words from the song.

After humming the tune repeatedly, one phrase from the song finally came to me. The phrase was “jigger of gin.” I don’t know why this bit or piece of the song was the first to come back to me because I have never been a drinker. I have no idea what gin tastes like.

My wife and I had been invited out that particular night for dinner with a group of friends, so on the way to and from the restaurant I kept humming the tune silently putting the phrase “jigger of gin” in whether it made sense in the tune. When we got home that night it was too late to get on my computer to check out the phrase that was stuck in my head. I went to sleep humming the tune.

The next week morning I was still humming the tune and before I got on my computer, a second phrase and the name of the group that sang the song came to me. The second phrase was “Scotch and soda” and the group that sang it was The Kingston Trio.

I went to my computer at this point and was able to find a You-Tube video of The Kingston Trio and all the lyrics to the song, that was variously named “Scotch and Soda” or “High as a Kite Can Fly” on different websites.

So in this case I struggled trying to find an answer, until bits and pieces started coming together. When I thought I had enough bits, I enlisted the aid of the internet to fill in the pieces until I had a complete picture.

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Bits and Pieces, Part II

I began the previous post, entitled Bits and Pieces, Part I, by addressing the specific question of how do I proceed when I face the dilemma of not being able to think of the right word or not being able to put together my thoughts on a particular topic? The simple answer was I used the bits and pieces that I did have until I had enough information to be able to put together the whole puzzle. I tried to rely heavily on my own memory and thought processes before enlisting outside resources like the internet.

Let me try to explicate the process further, by giving you a second example. This example occurred several months ago. I was trying to write an essay on different views and definitions of liberal arts.

Because I had been working on this essay for a number of months, I had the ideas generally formulated. What I wanted to do was introduce the topic by referring to a scenario that occurred many times in ancient Greece when two protagonists had differing ideas. They aired those ideas in a public setting. This is where I was lost. I couldn’t think of the word to describe that public setting.

So with this information, I went to a friend to ask him what word was I looking for. He gave me a word. Unfortunately, it was not the word I wanted. The word he gave me was forum. It was a good word, and perfectly described the process that I was trying to describe. Why wasn’t it the right word? Unfortunately, this word is Latin and not Greek.  But now I had enough information to go to a second source who knew right away the word for which I was searching. The word was agora. In Greek, it means “market place.” In each city in ancient Greece, there was an open area where merchants came to sell their wares. This area was the same place where orators would come to try to get people to buy their thoughts. So now I had two words that I could use, one Latin and one Greek, depending upon whether I wanted to reference ancient Greece or ancient Rome.

What was my process in this example? As soon as I had a general idea of what I wanted to express, I took those thoughts to a friend to ask for help in finding the best way to express my thoughts.

In the terminology of a popular television show, in both cases, I used a lifeline. The difference was when I employed that lifeline. The first big lesson that I have learned from this whole experience is that eventually everyone will need a lifeline. The second big lesson is that when you need a lifeline, use it!

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Living with Aphasia: Loss of Control

One of the reasons that I started this blog was requests, from professionals working with persons with aphasia and their care givers, to describe what aphasia looked and felt like from the inside. I have been struggling with the following question for a couple of months. How do I express frustration without it sounding like despair or depression, and yet not minimizing those feelings of frustration?

Aphasia literally means loss of words. Practically, I have found it means loss of use or control. Ever since the earliest of times, even in the Garden of Eden, the first step to control or to use something was to name it. If I can’t remember the name of something, how can I ever expect to be able to use it or control it?

Prior to two years ago, I believed that God had given me a greater sense of freedom. If I felt the urge that it was time to change jobs within academe, I could take the initiative and try to get a new job. Today, I do not have that option. Aphasia, fatigue and age now preclude me from working at those jobs that I loved and enjoyed within the academy. Honestly, I am sad and frustrated with that prospect.  But I am not depressed, which is the question the neurologists and therapists keep asking me. I am grateful for the opportunities that have been opened to me prior to this, as well as the work that I have been able to accomplish up to now.

I also want to make something clear at this point. Although I may be frustrated, my frustration has not taken away my sense of gratitude for the life that I have lived, the work that I have accomplished, or whatever lies in front of me. A recent episode of “Criminal Minds” ended with what I found to be a thought-provoking conversation. One FBI agent was asked if the victim that they had just saved was okay. A second agent involved in the rescue responded that the victim was strong but scarred. The first agent then said, “You can’t come through something like this without getting scars. But scars only show us where we have been;, they do not dictate where we are going.” Another agent then closed the show with a Ralph Waldo Emerson quote by saying, “What lies behind us and what lies before us are tiny matters compared to what lies in us.”

At times, I feel scarred, but I know it’s not the end of the road. I don’t necessarily know where the road is going. But I am grateful for the opportunity to once again play the game that my wife and I used to play many years ago when we took Sunday afternoon car rides. Whenever we came to an unfamiliar intersection, we would look at each other, pick one of the roads and say to each other, “Wonder where this road goes?”

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When and How to Tell the Grandkids

This past Thanksgiving my wife and I split a week between our two daughts and their families. One daughter has a daughter who is 13. The other daughter has 2 boys, aged 10 and 6, a daughter aged 4. Our daughters, who live over 500 miles away from us, are only 20 miles away from each other. Until two years ago, with my schedule in the academy, it was always easier for my wife and I to travel and visit them for the holidays. We would be there for both Thanksgiving and Christmas.

The year 2009 was the first break in that routine. Thanksgiving came eight months after my traumatic brain episode. I had been cleared to drive some, but not for long periods at a time. Since my wife does not like driving in snowy weather, we decided that the weather would be a better bet in November. So we told the kids that we would come for Thanksgiving. We then scheduled a number of required follow-up examines  for me in December and January. So we had our first experience of CHristmas in November.

It really turned out to be the right decision because on December 30, with my wife  driving me home from a doctor’s appointment, I had a grand mal seizures. I was unconscious, so she called 911 and the ambulance arrived very quickly. On the ride to the hospital, I never regained consciousness. In fact I had three more seizures in the ambulance before I got to the hospital.

Throughout 2010, I had to fight the effects of epilepsy, fatigue, auras and the uncertainty of what might  be next. As Thanksgiving and Christmas approached, my wife and I decided to travel over Thanksgiving and stay at home over Christmas.  Our daughters agreed completely with the decision. The grandkids especially the three younger ones were dissapointed.

Throughout the Thanksgiving visit ,it was obvious to everyone that something was different with Pop Pop. He was constantly fatigued. Noise, bright lights and commotions bothered him. He could not play the video games with the boys that he used to play with them for hours.

Our older granddaughter is a very smart young teenager. She went to church with us the Sunday  after Thanksgiving. My wife and I went to the church we went to when we lived in that area 15 years ago. We saw many old friends most of whom knew what had happened to me. Our granddaughter overheard several conversations where people were asking about particulars of my condition. In one of those conversations, the individuals said that it was a miracle that I was still alive and doing so well. I didn’t think about our granddaughter being right there, so I replied that I had four different doctors tell me that they had no medical explanation as to why I was still alive. I continued by saying that I told the doctors I understood what they were saying, but I knew why I was still alive.  Three of my doctors said tht they understood the role God played in medicine.

Later that day, our granddaughter asked her mother if Pop Pop had epilepsy. Out granddaughter had some idea of what that meant because her father’s sister has it, and one of her cousins had tried to explain it to our granddaughter when she asked him why her aunt didn’t drive anymore and why  he had to do all the driving. Our daughter told our granddaughter about my seizures. Later our granddaughter told our daughter what she had heard at the church. She also told our daughter that she knew why Pop Pop was still alive. “He is still alive, because he is so special.”

When my wife and I got home, in a conversation with our daughter who is the mother of the three kids, I asked her if they had asked any questions about why Pop Pop couldn’t play with them like he used to. She said that they hadn’t  asked any questions. The only thing the boys  said was that Pop Pop was tired all the time. The six-year  made a  comment that  “all old people with white hair get tired” 🙂 (that was his great wisdom!)

I have a question for those of you who have had more experience in dealing with epilepsy of grandparents who are not constantly in contact with young grandchildren. When,  how much and who should tell the grandchildren?