By's Musings

Epilepsy

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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?

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Welcome 2011!

It’s a new year. Welcome 2011!. I not really sad to bid farewell to 2010. I hope and trust that 2011 will be  a better year than 2010. My one resolution for the new year is to work to make that so.

This year is starting out very differently than the way  2010 started. I spent January 1, 2010, the same way I spent December 30 and 31, 2010, as well January 2 and 3, 2011, in a hospital bed unconscious due to 4 grand mal seizures within a 30 minute time span on December 30.

I spent much of 2010 learning how to live with epilepsy, sometimes more successfully than other times. Although I didn’t have any more major seizures during 2010, I did battle balance issues and auras most of the year. By the beginning of December, my neurologist seemed to have found the right combination of seizure medications to take care of the auras. I have not had any since Thanksgiving.

The biggest problems that I seem to have now are increasing  memory problems and tremors. My doctors are not sure whether these are a direct result of the TBI from March, 2009, or side effects of medications. SInce the auras are under control and I have had no major seizures, the doctors are somewhat  hesitant to make more changes to my medications. I can live with the tremors. I am doing exercises to try to improve my memory. I have also learned to keep a notebook pad and writing instrument with me at all times.

This is not what I envisioned 2010 and 2011 would be. However, this is where I am and what I have to deal with. So I must make the most of it. A friend recently sent me an email  with a couple of jokes in it. The first was  that it had been snowing at this house for three days. His wife was doing nothing but staring through the window. He said if it didn’t stop snowing tomorrow, he would have to let her in. THe second joke was “Life may not be the party we had hoped for, but while we’re here, we might as well dance.”  Even though I must also deal with Afib and the arrhythmia behavior of  my heart, as well as the epilepsy and aphasia, I will just have to dance more in 2011. Will you dance with me?

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We Are All Different

Living with aphasia and epilepsy has reminded me of a very important lesson in life. That lesson is that: “We are all different. One individual is not necessarily better than another. He or she may just be different.” What am I talking about? Four incidents in my life have reinforced this lesson. You might say that I have been a slower learner.
The first incident was an automobile accident more than thirty years ago. I was stopped waiting to make a left-hand turn and I was rear-ended by a car doing forty miles per hour. Due to the whiplash caused by the accident, the back of my head struck the head rest, breaking it off. In doing so, I suffered a serious concussion that permanently affected my sense of taste. Ever since that accident, everything has tasted salty. For more than thirty years, I have not had to salt any food at the table. For a short time after the accident, I had a memory of what food “actually tasted like.” After thirty years, the memory of “true taste” has faded away. What should have this taught me about the difference in people? We observe the world through our senses. My sense of taste is different from yours. Because they are different, that doesn’t make one any better than the other.
The final three incidents are all related to just one episode. A blood vessel in a benign tumor in my brain burst, giving the appearance of a stroke and leaving me with many of the same after effects as those of a stroke. The first of those effects is that my physical ability to get around has been diminished. Prior to this episode, I was considered athletic. Until my knees gave out a couple of years ago, I had played fairly competitive basketball and softball for more than fifty years. Over the years, I had four different college basketball coaches invite me to come in and teach their teams how to set picks. Today I need a cane to walk about outside our house. If I am going to walk any distance, I need a stroller with a seat in case I must sit down. Today I have a handicap parking hang-tag to permit us to park in those special parking spots. Was the athletic me any better than the challenged me? I am still me. I am just different.
A second result of either the burst blood vessel filling my cranial cavity with blood or the subsequent removal of the benign tumor is a mild case of aphasia. Aphasia literally means “a loss of words.” It is a communication disorder which affects my ability to use or understand written or oral language. It hasn’t affected my mental capacities, just my ability to use words in a timely fashion. I can still analyze situations as well as I did before. I just can’t respond to them as quickly as I previously did. I know what I want to say, I just can’t find the right words to express it quickly. I need more time to write articles like this, but I can still write. Was the old me better? I am still me, I am just different.
Also as a result of this episode, I had four grand-mal seizures and am now labeled epileptic. Although I am on anti-seizure medication, my wife and I must be on guard for the signs of another seizure. Since not enough time has elapse since my last large seizure, my driving privileges have been taken away from me. Does not being able to drive make me less of a person? I don’t think so now. Prior to this happening to me, I might have thought so.
Before these incidents and after effects, I know I thought differently. I now see why we need to do everything we can to “even out the playing field” in school and work situations for people with challenges. I am more sympathetic to students who need extra time on tests and assignments. They are not lesser persons. All of their capabilities have not necessarily been affected. They can be just as smart. They may just be a little slower. They may even see or taste things in a new and different way that can lend a new perspective to a problem and lead to a new and different solution. My continual salty taste has had one advantage. Coffee that tastes bitter to other people actually tastes okay to me.
For people who see differences as signs of being less of a person, I am not recommending that we need to beat them up one-side of their head and down the other until they change their mind, even though that’s what it took for me.

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Golden Spiders, Jumping Trout, Revolving E’s; I Never Know What I’m Going to See Next

 

On a Saturday morning, two weeks after my week of observation in the hospital, I woke up early and went to my computer to get some thoughts recorded. I turned my laptop on and as usual as it boots up, a diagonal DELL appears across the screen with the E slanted like the old ENRON symbol. When I turned away from the computer, I could still see the slanted E, but instead of being fixed and its normal blue color, it started turning and changing colors. That image lasted about 30 minutes. Later that morning, my wife and I went to the annual arts and craft show at a local school. I must have stayed too long and walked too much. I was tired and hungry and there was too much food aroma in the gymnasium and hallways of the school, too much noise and visual stimulation. At one point I was having trouble walking and my wife asked me if I was having problems. I said I’m tired and I am seeing some unusual things. She wanted to know what I meant, I said “Spiders.” She asked me, “What do mean?” I explained, the following: One vendor had golden spider Christmas tree ornaments. They were based on a legend from North Germany of spiders that would decorate Christmas trees and leave presents for the kids in the house and then get on the Christmas trees and turn to gold. After looking at these ornaments when I looked up I started seeing gold spiders scurrying around on the top of people’s heads and on the tops of booths. Later, occasionally I would see these spiders. None of them ever spun a web. They would just run across the top of things in my field of vision.

On many tables there were shirts with pictures of fishermen pulling in trout that were jumping out of the water. Later when I would look up particularly against a blue background, I would see trout jumping in midair. One vendor had marshmallow blow guns made out of small white pvc pipe with red and green pieces of tape on them. These reminded me of an old the screen saver I used to have on my computer so I started seeing these blowguns growing by adding 90 degree angles and extending new pieces.

One of the most prevalent food aromas came from a vendor who was roasting nuts. The smoke from his roasters set off the fire alarm in the building and I started having problems walking again. My wife got me a chair. After I had rested for a while, I guess I still had a puzzled look on my face, and she asked me “What’s wrong?” I said I am hungry. We left the show and drove home. On the drive home, every time I looked up at the sky, I saw trout jumping out of the clouds.

 

The next day, I had the same visual images off and on all day long, but I began noticing a pattern to them They appeared more often when I was in the presence of bright lights and loud noise and/or when I was tired and/or hungry. Even without lights, when I was frustrated or engaging in a battle with myself, I would see the dueling light sabers that I mentioned in a previous posting. When I was waiting impatiently for something to happen, I would see the spinning cursor image. When I was trying to put something together like the thoughts for an essay, it was the PVC pipe screen saver. When I was facing something that was obviously wrong, I would see the revolving E. When everything was fine and going smoothly, I would see trout jumping out of the stream. When there was a lot of confusion and a lot of action, but no recognizable pattern to that action, I saw the gold spiders scurrying about.

As I related these events to my doctor, she indicated they could be auras, ocular migraines, or side effects to medication. She didn’t want to take any chances on the reoccurrence of a seizure, so she reduced the dosage of one of my medications and started me on another. After about two weeks on this new combination of drugs, I noticed some changes. The strange visions are greatly reduced. What is happening more often now is that “I feel like I am in a fog.” My doctor said, if that doesn’t go away, she will make some additional changes to my medications to see if we can hit on the right combination.

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Dueling Light Sabers

Two weeks after my week in the clinic, my wife and I went to an Epilepsy Advocate Take Charge Tour Event that was held near us. Epilepsy Advocates are doing a national tour providing local communities the opportunity to learn from and interact with local medical professionals and Epilepsy Advocates. These events are a great opportunity to gain epilespy support and knowledge, but the best part of the evening for my wife and me was meeting others who have epilepsy and their care givers. I can’t recommend these events more highly. To find a meeting near you check out the epilepsy advocate web site at

www.epilepsyadvocate.com/epilepsy-community/attend-event.aspx.

If there are no meetings near you, the website offers the opportunity to experience a meeting via a web cast. You know the old saying,”There more than one way to skin a cat.” If you’re a cat lover or are in any way offended by the above idiom, remember that there is always more than one way to do something.

Driving to and from the meeting, the bright-colored lights from brake lights and traffic signals started emanating these long straight colored light rays. These light rays remained in my vision after the source was gone. They reminded me of the light sabers from Star Wars. After a couple of minutes, the lights rays turned into light sabers which started dueling each other, although I never saw anyone holding the sabers. They were just dueling ach other in mid-air.

Te next morning when I woke up, the first thing I saw was a white crocheted wall hanging that my wife had mounted inside a gold frame. When I looked away from the wall hanging. I started seeing copies of the circular Microsoft processing cursor that were light yellow and bright gold. I saw these spinning figure for about 30 minutes until I ate breakfast.

After breakfast, even without bright-colored lights to trigger the images, the dueling light sabers came back until I had to work on my wife’s computer, which I had to restart to finalize an update. When her machine first boots up, the word Compaq appears diagonally across her screen. The Q is a bold block capital letter. It reminds me of the old, old screen saver which looked like PVC pipes that would grow until they filled the screen. When I looked away from my wife’s computer screen, I could still see the Q, but then it started growing by adding 90 degree joints and sections of pipes until it filled my field of vision, just like the old screen saver would do. I could see through the pipes and the openings. I saw the PVC pipes and gold spinning rings off and on all afternoon, until we had to go to a church meeting and dinner. On the drive to and from church the bright-colored lights of traffic and brake lights brought back the vision of the dueling light sabers. When a duel began it would last about 15 minutes.

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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.