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Neurology

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Epilepsy and Hole in the Bottom Lip

Living with Epilepsy and the Aftermath of a Traumatic Brain Episode

There’s a Hole in the Bottom of My Lip

By Baylis

In March 2009 I had a traumatic brain episode. A blood vessel in a benign tumor attached to my brain burst, filling my cranial cavity with blood and creating all the symptoms of a stroke. After the removal of the benign tumor, I was warned that I could have ongoing coordination and balance problems. After months of physical therapy, my balance and coordination improved. I was able to get around my home most of the time unaided. However, whenever I would go out, I needed the insurance and sometimes the assistance of a cane or a walker.

Then, in December 2009, I had four grand-mal seizures. I was now epileptic. I am on anti-seizure medication and my wife was warned to constantly watch me in case of new seizures. Recovering in the hospital from the seizures, I was warned that some of the balance and coordination issues could return, which they did. This necessitated some more physical therapy, that included lots of walking and  climbing stairs, some in place exercising and some simple games with inflatable balls. It’s been more than six months since the grand-mal seizures. I have not had another grand-mal seizure, and my balance and coordination are slowing returning to where they were prior to the December episode. My endurance has not returned yet so I am working to improve it each week.

In spite of the progress, I still have one concern. In the aftermath of either the brain surgery or the seizures, no one warned me about the possibility of developing a hole in my bottom lip. What do I mean?

Every time I drink liquids from a glass or a cup, I find drips either on the table or down the front of my shirt. It doesn’t matter whether I drink straight from the glass or cup, or I use a straw. The drips are still there. It seems to be worse with cereals or soups that I eat with a spoon. My wife keeps suggesting that I slow down and make sure that I get the spoon all the way into my mouth. I reassure her and I then take pains to show her that I am very careful about leisurely and steadily raising the spoon from the bowl without spilling any of its contents, and slowly putting the spoon completely in my mouth before “slurping” its contents. Even with these precautions the drips magically appear.

But my problem is not just with liquids. Every time I eat crackers, chips or cookies, I leave a pile of crumbs on the table in front of me. Toast, bread, donuts, muffins and bagels all have the same fate. The only logical explanation that I can conclude is that there is a hole in my bottom lip.

My wife’s first response when I told her about the problem was, “Don’t sweat it. Nobody cares. Everybody does it to a certain extent.”I shot back, “Well, I do care. I know I shouldn’t, but I find it embarrassing and annoying”. When this slipped out, my wife’s solution to this dilemma was to suggest the old standby, duct tape. What is that “Use Number 102?” I am not ready for that solution yet. With my beard, I know there would be problems removing the tape. Has anybody else experienced this hole in the bottom lip phenomenon? Have you found any workable solutions or it is time, as my wife suggested, for me to quit worrying about it and get on with the meal? People that know me know that I am always ready to get on with the meal.

 

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Living with Aphasia- Chopping Down the Telephone Tree

Living with Aphasia

Chopping Down the Telephone Tree

By Baylis

After three recent telephone calls that were very frustrating, I had one of those “Wild: Out of the Blue Thoughts.” What if George Washington had chopped down his father’s telephone tree instead of his father’s cherry’ tree?

Telephone trees are those automated response systems that you get when you call many businesses or professional offices. You know the ones, where a very polite individual with either a very pleasant or super business-like voice says, “Please listen to the following options and select the most appropriate. If you want       information about XYZ, press 1; if you want information about PQR, press 2; if you want information about ABC, press 3; and usually after what seems to be half an hour, if you want to speak to an operator, press 0. Even before my aphasia, I had problems with these telephone trees. Many times, I had difficulty in relating my problem to the options provided, so most of the time I would dutifully press 0. After my aphasia I have two new problems: 1) I can’t follow the options. I don’t understand what they are saying as they are saying them; and 2) by the time the list is finished, I can’t remember what number corresponded with what option.  For awhile I tried writing down the options as they were listed. However, on many of these trees the speed at which the list was given was way too fast for me to follow and write down an intelligible note with corresponding number from the telephone pad. To get the list repeated, I couldn’t remember what number to push. I tried a plan that was suggested to me by a friend who said he had discovered a way around these telephone trees. He said he always punches in 0 repeatedly, as soon as the list starts and continues to press 0 until a real live person speaks on the other end of the phone. Before all of you start following this plan, the telephone companies are smart enough to know what people are doing, so they have recommended businesses change-up their options on their trees, sometimes even removing 0 as a viable alternative altogether.

Before everyone accuses me of hating all telephone trees, I will admit that there have been several times during my 40 years as an academic administrator that I have implemented them in offices that I was supervising. In each of these cases it was to ease the workload of an overworked receptionist who would have had to divert her attention from the steady stream of live students that had come into the office for service. Who do you want to offend the most, the student standing right in front of you or the individual on the phone that you can’t see and who can’t see you? The purpose of the tree was to direct calls to an appropriate person to handle the question, or in off-hour times when the office was closed, to get the customers to the appropriate answering machine or voice mail so that their question could be answered quickly the next time the office was opened. When we set up those phone trees, we tried to make them very simple and short with no more than 3 options, not like some of the ones that I have encountered recently. On one call last week, there were 8 options, not counting the option of talking to an operator which was option 7. If you pushed 0 on that tree, the list of options started all over again. “AHA, Tricky, we got you!”

I am convinced that some of these telephone trees would not pass muster with the Americans with Disabilities Act. Where’s George when you need him?

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Epilepsy is Not the End of the World

Epilepsy is Not the End of the World

By Baylis

Several weeks ago, I posted a blog entitled “Aphasia is not the end of the world.” The first paragraph of that post included the following statements: “I admit that at times I need to remind myself that my mild case of aphasia is not the end of the world. Really, the only things I’ve lost are just some words, and usually it is only a temporary loss. I still have the things that really count in life. I still have my loving and supportive family. I still have a compassionate and praying church family. I still have considerate and helpful neighbors. I still have concerned and respectful colleagues and friends from more than forty years in higher education. I still have a team of knowledgeable and caring medical personnel. All of these people are individuals on whom I can lean. I have a real social network, not a virtual one. In addition to all these people, I still have my mind. A piece of advice to caregivers and friends, I really do not need sympathy. Please just be there when I need you, be supportive and encouraging at every step of the process, that’s the best gift you can give, and the thing I need the most.”

Ever since then I have been thinking that I should say something similar about my epilepsy. So here it is: “Epilepsy is not the end of the world.” With the exception of the big “C” word “CANCER,” probably the most feared disease is “EPILEPSY.” Epileptics are afraid of epilepsy because they don’t know what causes it. They don’t know if or when the next seizure will come. People around epileptics are afraid because they don’t know what the disease is and they don’t know what to do if someone is having a seizure. My wife is afraid because she was present when I had my first seizure and she says that she never wants to see something like that again. She is also afraid because she knows that I have to take my anti-seizure medication faithfully on a fixed schedule, and I have to watch my diet because certain foods have been known to interact negatively with my particular anti-seizure medication. She is afraid she will do something wrong and cause me problems.

One big difference between my mild aphasia and my epilepsy is that with work and practice, my aphasia seems to be getting better, while with my epilepsy I have to rely on medication to help keep the seizures at bay. As long as I take my medication faithfully, I have a good chance of not experiencing any more grand-mal seizures. It is not a guarantee, but a good chance. So it is not the end of the world.

Having spent forty years in the academy, I had to know more about the expression that I was using. What is the origin of the expression, “It’s not the end of the world?” The saying on a very popular T-shirt sold in the town of Resolute Bay is “Resolute Bay is not the end of the world, but you can see it from it here.” Resolute Bay is the second closest Canadian town to the North Pole.

Resolute Bay is an interesting name. How did the town get its name? It was named after the British mid-nineteenth century sailing ship HMS Resolute. HMS Resolute had been specially outfitted for Arctic exploration and during one expedition was trapped by ice as winter descended on Northern Canada. She was abandoned as her crew walked across the ice to safety in a small settlement, that later was name Resolute Bay. From that location they were able to contact England and let the Royal Navy know that the ship was abandoned. Queen Victoria renounced any claim to the ship. When spring came, some American whaling ships came across the Resolute and freed her from the thawing ice. Although the British navy had renounced any claim to the ship, the US Government as a sign of good will returned the ship to Queen Victoria is 1856. After another twenty years of naval service, the HMS Resolute was ordered to be dismantled by Queen Victoria. She had at least three desks made from its timbers, one of which she kept, one of which she presented to the widow of Henry Grinnell for his service to the British navy, and the third which she presented to President Rutherford B. Hayes in 1880 as a sign of appreciation.  This desk which became known as the Resolute Desk has been kept in the Oval Office or the President’s private office in the White House ever since. If the name Resolute Desk sounds familiar, it is probably because it was an integral part of the plot of the movie National Treasures: Book of Secrets.

I find it ironic that an expression that most likely was meant to carry a connotation of surrender and fear has behind it a story so closely related to courage, resolve and perseverance.  So when I say “Epilepsy is not the end of the world, but I can see it from here,” it doesn’t mean that I am giving up. It means that I don’t know what’s ahead, but I am ready to push ahead to find out. I have the things that really count in life. I have faith in a loving God. I still have my devoted and supportive family. I still have a compassionate and praying church family. I still have considerate and helpful neighbors. I still have concerned and respectful colleagues and friends from more than forty years in higher education. I still have a team of knowledgeable and caring medical personnel. All of these people are individuals on whom I can lean. I have a real live social network, in addition to my virtual one. On top of all these I have the will to press on toward that unknown that looks like the end of the world.

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Do Computers and Their Owners Look and Behave Like Each Other?

Do Computers and Their Owners Look and Behave Like Each Other?

By Baylis

I am sure many of you have heard the old joke and have seen the pictures that suggest, after a period of time, dogs and their owners begin to look and act alike. I am beginning to wonder if this is true with computers, especially the behavioral aspect. I am pretty sure that I don’t look like my computer.

However, living with aphasia and epilepsy, I am finding that my computer is imitating my symptoms. Recently it had a “grand-mal seizure” when it completely shut down.  It took a day in the “intensive care unit” to bring it back to consciousness and to restore some semblance of usability. Since that seizure, it has had numerous mini-seizures. It will “zone out” for about 30 seconds several times an hour. There appears to be no discernible pattern to these mini-seizures. The tech doctors are prescribing certain procedures to help prevent seizures. However, since they are not sure what the original problem really was, they will not guarantee their solutions will completely prevent another grand-mal seizure. All they can offer is a pledge that these procedures will help reduce the chance of a reoccurrence. For people with epilepsy, does this sound familiar?

Also after that grand-mal seizure, my computer is exhibiting signs of aphasia. It has “lost” programs and files. I know they are in there, but it takes lots of work on my part to find them. Does the computer really have a type of aphasia? Or is it my aphasia not allowing me to find what I want? Either way, the computer is behaving just like me. If my computer starts growing a beard, I am really going to be freaked out.

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Living with Epilepsy: Tragic Reminder

Recent events have reminded us of the unpredictability and mercilessness of epilepsy. A fifteen-month old baby was visiting her grandmother, when the grandmother had a seizure, fell on and suffocated the baby. The story may be found at
http://www.mlive.com/news/grand-rapids/index.ssf/2010/07/holland_1-year-old_killed_in_f.html

The grandmother had been an epileptic for more than thirty years, but appeared to have her condition under control with medication. It had been years since the last seizure or even a sign of a seizure. By recounting these events I mean no disrespect to the families or individuals involved. I am attempting to illustrate the capriciousness and unpredictability of epilepsy and anti-seizure medication to serve as a warning to epileptics and their families. To the families involved in this tragedy, I express my condolences and sincere sympathy.

My last appointment with the neurologist was the day after the above story hit the news wires. Referring to this news story, she reiterated several times that anti-seizure medication is no guarantee against seizures. She continued by saying it is at best a pledge of assistance in holding back seizures. She questioned me and my wife, Elaine, about my behavior and conditions over the past month. She was pleased with our answers and the test results from the last round of tests. She said the medication and dosages seemed to be working so that she thought it would be best to continue me on the same medications and dosages for a while, rather than risk a change. She also said that she wanted to see me in another month after another round of tests. She then looked straight at Elaine, and said “He’s doing very well.” But then she added sternly, “Watch him carefully, and don’t leave him alone.” I realize the grandmother in the above story had no control over her seizure. I also understand that the longer one goes without a seizure, the more confident one gets in believing that the seizures are gone forever. However, as a grandfather myself, I kept thinking how would I and my family live with our heartbreak if something like the above happened to us. No matter how inconvenient or annoying I find it to have someone watching me all the time, I then remember that it is better than the possible alternatives.

The neurologist turned to me and asked about caffeine consumption. I said that I was careful about getting sodas without caffeine and that I have had only one cup of real coffee since the seizures this past December, however, I have had several glasses of iced tea.” She said “It appears that you are behaving yourself most of the time. Continue doing that, but do better with the iced tea, and we may be able to arrange another cup of coffee for you in a couple of months.” Well, I guess that gives me something to anticipate. Do you know that decaf coffee doesn’t tastes all that bad? It is definitely better than I thought it would be.

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Aphasia Is Not the End of the World

I admit that at times I need to remind myself that my mild case of aphasia is not the end of the world. Really, the only things I’ve lost are just some words, and usually it is only a temporary loss. I still have the things that really count in life. I still have my loving and supportive family. I still have a compassionate and praying church family. I still have considerate and helpful neighbors. I still have concerned and respectful colleagues and friends from more than forty years in higher education. I still have a team of knowledgeable and caring medical personnel. All of these people are individuals on whom I can lean. I have a real social network, not a virtual one. In addition to all these people, I still have my mind. A piece of advice to caregivers and friends, I really do not need sympathy. Please just be there when I need you, be supportive and encouraging at every step of the process, that’s the best gift you can give, and the thing I need the most.

When I run into road blocks on writing projects, I have learned that I can put those projects down and return to them later. I have also learned that after I have made a real attempt, I can then ask for help at any time. After several attempts when the words don’t come, I have also learned that it is okay to completely walk away from some projects. It’s not the end of the world.

Aphasia is not the end of the world. I am still alive and I am still me.