By's Musings

Aphasia

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For Me, Aphasia is like solving jig saw puzzles with pieces missing

For Me, Aphasia Is Like Solving Jig Saw Puzzles with Missing Pieces

When asked what it’s like living with aphasia and trying to speak or write, I describe it by saying that it is like putting together jig saw puzzles with pieces missing. One trouble with both writing and jig saw puzzles is that you usually don’t know pieces are missing until you get pretty far into the process of writing or solving the puzzle. Like most people, I do jig saw puzzles section by section. After I work on a section for a while, sometimes, I get to a particular place and I find a puzzle piece is missing. I can’t find it. It is just not there. I have hundreds of puzzle pieces spread out in front of me. With writing I get to a particular place and I can’t come up with the right word. I have thousands of words running through my mind. Whether with jig saw puzzles or writing, I am shuffling through all those pieces and words, but the right one that perfectly fits in that one place, is not there. What do you do with jig saw puzzles in this situation?
Most people would usually start looking at another part of the puzzle and try to find puzzle pieces that fit into that new part of the puzzle. If I do that enough for a puzzle, I will use up all the pieces that were in the box, and then I would know for certain that a piece or two are missing. After searching the house for the missing pieces, I might get out the other puzzles and see if the pieces got mixed up in those puzzle boxes. After all that, I really only have three choices: 1) pick up the puzzle pieces and put them back in the box and mark the box to indicate that a piece or two is missing; 2) go to one of those websites that advertize that they can replace missing puzzle pieces and purchase new pieces; or 3) pick up the unfinished puzzle and throw it away.
With my writing, I operate similarly. When I find myself stuck on a word, I will finish the remainder of the essay and then come back to the part with the missing word. Sometimes by then I will have found the word. Sometimes I haven’t. At that point of time, I will start searching in earnest through the word helpers like a cross-word dictionary or a thesaurus to try to find the right word or words. If that doesn’t work, I will set the essay aside and come back to it later. If I can’t find the right word or words then, I know at that point it is time to ask someone for help to find the appropriate word or words. That is like going to the puzzle websites to buy missing pieces. If that doesn’t work, I can either put the project aside and wait for a long time before I come back to it, or I trash it and forget about it.
Right now I have five or six projects on my computer that I have started but are in various stages of incompleteness. For the ones that are almost complete, I have sent copies to friends and former colleagues and asked them to review the projects and make suggestions. For the ones that I think still have possibilities but are in a much rougher state, I have set them aside, and I will come back to them off and on, at much later dates. Over the past months, I have looked at several essays that I have started and have decided that they are beyond repair or restoration. I have trashed them. I keep a file of ideas for essays, just the ideas, but not the real rough starts. Perhaps, I will come back to these ideas with a totally different approach at a much later date. This is a whole new way for me to operate, but it permits me to write and still cope with my mild case of aphasia.
If someone else has used the analogy of living with aphasia to missing jig saw puzzle pieces, I apologize for appropriating it. As an academic I have been trained to give credit for ideas to where credit is due. I did what I thought was a fairly exhaustive internet search on this topic and came up with nothing that was similar to the approach that I am taking in this essay. There were references to many exercises in aphasia therapy in which the individual with aphasia is asked to fill in a missing word in a simple sentence or to name a missing object in a simple picture. However, none of them compared the exercise to missing pieces of a jig saw puzzle. There were many references to autism as living with missing puzzle pieces, but none to aphasia that I could find. In dealing with autistic individuals or individuals with aphasia, I would in no way suggest throwing them away. Here is the place for a therapist or a care giver to provide the right degree of challenge and support to help the individual. An essay or a piece of work is far different from and far less valuable than the individual, although, for many of us, we find it difficult to separate ourselves from our work. It is a lesson from which we could all benefit.

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Momentary Absences: Epilepsy, Aphasia or Senior Moments?

Momentary Absences: Epilepsy, Aphasia or Senior Moments?

Have you ever had one of those moments when you are not sure of where you are? They are sometimes called momentary absences. Or you know someone just asked you a question, but you didn’t understand the question or you can’t think of a reply, or you know the answer but can’t communicate it? Or you were doing something and you seemed to doze off? For those of us who are slightly age challenged, and have been diagnosed with epilepsy and aphasia, we have three conditions upon which we can blame these momentary absences. If they become more frequent, it behooves us to try to determine the source or sources of the absences.

When many hear the term epilepsy, they have a picture of violent convulsions or an attack of unconsciousness with either stiffness or floppiness. What is epilepsy? It is not a disease. According to the Encarta Dictionary, epilepsy is a medical disorder involving episodes of irregular electrical discharges in the brain and characterized by the periodic sudden loss or impairment of consciousness. These episodes are called seizures. Seizures can be large with total loss of consciousness and accompanied by convulsions, rigidity or floppiness, or small with what appears to be a momentary absence of some or several body functions. Some individuals are born with the tendency to have these irregular electrical discharges and hence, seizures. For others these irregular electrical discharges and hence, the seizures, begin after a traumatic brain event, such as a stroke, injury or operation. My seizures began after the removal of a benign brain tumor which was discovered when a blood vessel in the tumor burst, filling my cranial cavity with blood and causing all the symptoms of a stroke. My seizures most likely are a result of the scar tissue left after the removal of the tumor. I had four grand-mal or total generalized seizures within a 30 minute time-frame. I was hospitalized and stabilized. I was put on anti-seizure medication and I have not had any large-scale seizures since those first four.  I can’t tell you if I have had any “mini-seizures.” My neurologist has done several EEG’s. After one of them, she said that it showed lots of spurious activities. (I jokingly remarked, “So what’s new?”). When we asked her what that meant, she said that it could be a sign of lots of mini-seizures or the prelude to another major one.

I have come up with my own way of identifying my moments of absence. If I start to do something and before I can do it or finish it, I get sidetracked, that’s a senior moment. If I can’t remember to do something that I am supposed to do, again that’s a senior moment. If I find myself struggling in a conversation to find the right word or expression, that’s the aphasia. If I can’t understand the telephone answering tree when I call a company, that’s the aphasia. If I can’t understand and follow written instructions, that’s also the aphasia. If I am sitting in the lounger in the living room watching television, reading the newspaper, doing a crossword puzzle or a Sudoku, and I seem to zone out, then that’s probably the epilepsy. Of all the momentary absence, these scare my wife the most because she says that what happened in our car just before the first grand-mal seizure. One moment she was talking with me and I was slow responding to her. I was staring straight ahead with a blank expression on my face. Then I didn’t respond at all to her question and I became stiff and lost consciousness. When I zone out now, she keeps pumping me with questions to make sure that I am in there somewhere. Most of the time, I respond by her third question. Except for the dangers of seizures, it is convenient to have three excuses for unresponsiveness and lack of completing tasks. I used to have only one excuse, which was “selective hearing.” Occasionally, I still pull that one out of my back pocket to use.

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Words and the Power of Words

Words and the Power of Words

 

Kevin Hall wrote in the introduction to his e-book, “Aspire”,

“We live our lives word by word-to build our relationships, to convey our points of view, to object to wrongs done to us or to others, to comfort our children and our friends. We also use the wrong words-sometimes unknowingly-and get ourselves into situations we’d rather not be in.”

 

Stephen Covey added these thoughts to the introduction of “Aspire”:

  • Words sell and words repel
  • Words lead and words impede
  • Words heal and words kill

 

For me, and I suspect for many others with aphasia, each day is a battle for words. We have lost the use of words, and thereby a piece of ourselves. For some of us, the loss is larger than others. For some of us, the loss is more permanent than others. For some of us, we will recover some of our former facility with words. For some of us, that faciIity is gone forever. Each person is different, and will have to live out his or her own story. I don’t want this piece to be discouraging or melancholy.  However, attempting to recover words is hard work and everything is not going to be joy and victory. Each day for me is a story of wins and losses. I must learn to savor the victories, the recovery of words, seemingly long forgotten, or the discovery of new words. It’s like a little child being allowed to go to the attic and rummage through the many boxes stored up there. In doing so he finds clothes and toys long forgotten, It can also be like that same child at Christmas opening up presents and finding new things to wear or to play with. With the child in the attic, there are many questions. Why would his parents have taken away that toy in the first place and deprived him of the pleasure of playing with it? However, most of the time there is also great pleasure in having it restored to him. Sometimes the child finds an obviously well-worn sweater that he has no recollection of ever having worn. However, now that it has been restored, it becomes his favorite sweater and he has to wear it every day.  With Christmas presents, we know there should be an attitude of thankfulness in receiving something new. However, sometimes we do not feel or show the appreciativeness that we should. Some presents become immediate favorites and we play with them until they are broken. Other presents find their way back into the cabinet and almost never see the light of day. When that happens, did we have too many things to play with or wear? Possibly, however, we should eventually come to realize that the particular gift was meant for our pleasure and we should come to appreciate and use it appropriately. Sometimes the gift slips into the back of the cabinet or dresser and is forgotten about. When that happens, it will eventually be taken to the attic to be stored away until it is brought out again well into the future.

Sometimes there are losses. What should we do with them? Once a wise coach was asked, “How do you expect your team to handle a loss?”. He responded that he did not want his team to dwell on that loss but to take it and learn from it. Is there something we did that we shouldn’t have? Is there something we didn’t do that we should have? Is there something that we could have done better? There are really two aspects for each of those questions. The first aspect is the personal reflection that goes into trying to answer them. Individuals must try to answer those questions for themselves. Those attempts can be very hard work and may not always lead to answers. The second aspect is that sometimes a coach must step in and help the individuals answer the questions. Have you ever heard the expression, “It’s as clear as the nose on your face?” For many of us, we must have a mirror to see the nose on our face. A coach or caregiver must become a mirror to help the individual see his nose.

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Teaching Old Dogs New Tricks

Living with Aphasia: Teaching Old Dogs New Tricks
By Baylis
You can’t teach old dogs new tricks. I have heard this saying for many, many years. (Does that make me an old dog?) Over the years, I have observed the difficulty in retraining dogs that have become acclimated to behaving in certain ways. You never heard this saying about cats. I don’t think cats were ever mentioned in the same way because cats are very hard to train in the first place. They train themselves. However, once a cat has settled into a routine, it is extremely difficult to break that routine. We had a cat that we started feeding first thing in the morning. After that, if we didn’t get up when the sun would first rise, this cat would come into our bedroom and gently remind us that it was his feeding time. He would put his face right next to our faces and start rubbing against us or purring.

I have now had first-hand experience with this adage. For many years prior to the hemorrhage in the  blood vessel in the tumor on my brain, I was not the best filer. My filing system has been called clutter. I would have eight to ten piles of papers or journals all around my office. There did not appear to be any rhyme or reason to the piles. However, I was renowned for my memory. I would easily have a dozen jobs in the air at any one time. When someone would come into my office to talk about something, I could inevitably go to the correct pile and within a minute or two, find the document that we needed to discuss. People were amazed that I knew where it was. I can’t do that anymore, although I still have eight to ten piles of papers all around my office at home. However, when I get an idea about how I can update an essay or article that I’m working on, I can’t find the documents. Since I can’t use my former filing system anymore and knowing what it was probably won’t help other people now, I will let you in on my secret of filing prior to the episode. As I said I had a good memory. But I was not remembering exactly where a particular document was. What I doing was constructing those piles according to the day that I worked on the particular project under question. All I had to do was remember what was the last day I had worked on the project. I could go to that pile and find the needed documents.

Since the episode I have tried to put all the documents that I work on in manila file folders and label the file folder. The difficulty that I will have to teach myself to overcome is to now put the file folder away in some semblance of order other than by date. I spent several days this past week alphabetically filing all the file folders that accumulated in my office, first according to author and second by title. It’s amazing what I have found. There were several duplicate files, that if I had been following this procedure all the time, I wouldn’t have had to create. What’s also true, but should not be amazing, is there are some things that I know I worked on but are now lost.

The second lesson that I have learned through this process is that one needs to keep one’s computer files in order also. There are documents I know that I have created but they are nowhere to be found on my computer. I have looked at all the files alphabetically and chronologically, and the documents under question are nowhere to be found. To try to remedy this situation, I first set up a spreadsheet listing all the files I created. The spreadsheet had entries that could be sorted by name of file, author, source (if it was from a journal or website), and date. As I created new files, I entered the information related to that file on the bottom of a front page and copied that front page to various pages that I then sorted by title, author source and date. I know this type of problem and process is more suited to data bases. Why did I use a spreadsheet and not a data base? I have always been more comfortable setting up spreadsheets than data bases. The old dog is barking again. I have learned the hard way this is more of a data base problem than a spreadsheet problem. The last two times I sorted the pages of the spreadsheet I didn’t make sure that I was sorting the whole page, and I found I was mixing up file titles with the wrong source or date. This week I believe that I will have to step out and try two new tricks. The first is to create sub-files on my computer and file documents in an appropriate sub-file. The second is to create a data base for my files. Next week I will report on my success or failure.

In our adult Sunday school class this past week we were discussing Abraham and someone asked the question: “Why do we seem to learn more from failures than successes?” Another individual brought up the example of Thomas Edison. After more than 100 attempts to construct a working light bulb, someone asked him if he was discouraged. I think his response can help us. He is reported to have answered the question by saying, “No, I am not discouraged. I now know 100 ways that won’t work. I won’t use any of them again and I can try something else.”

As I live with my aphasia and memory problems, I am collecting a whole set of practices that I now know I won’t have to try again. I won’t have to make those mistakes again. I have also learned the secret to teaching old dogs new tricks. It is actually quite simple. KEEP AT IT; DON’T GIVE INTO IMPULSES OR WHIMS. The minute you let the old dog revert to his old behavioral patterns, you have to essentially start over again with the training. With that in mind, I decided to try practicing some of the new filing techniques this week. How is it going? The best I can say is that it is going, but not as well as I had hoped. I must admit I have had to resolve to start over twice and I must also admit that I failed in setting up a working data base. Old habits (Old tricks) are hard to shake off. What actually are old habits? They are engraved patterns of behavior, etched into the synaptic paths of our brain. To construct a new habit, we must break down and eliminate as much as possible the old habits. What we know from brain research is that unless the paths are completely eliminated by damage to the brain, those paths are still there. We can make new dominant paths but the old paths are still there, and the individual can easily revert to those paths. It’s similar to putting a new roof on a house, you really should remove the old shingles before you put the new shingles on. If you don’t, the new shingles will not always as effective as they should be and you will have to replace them much sooner than you normally would. If you have read my first blog on living with aphasia, it’s all about the story of perfect practice making perfect. The amateur practices until he gets it right once. But that’s not enough. Chances are, when the next opportunity to make that play or perform that number occurs he’ll get wrong again. The professional practices until he can’t do it wrong. The muscles are locked into particular movements and the individual just does them naturally.
I have just discovered a new (new to me) site for aphasia patients and caregivers. It is a blog entitled Aphasia Corner. It can be found at http://aphasiacorner.com/blog/category/aphasia-corner.
I invite you to look them up. Someone involved Aphasia Corner has my type of humor. QUESTION: What is aphasia? ANSWER: It is the weapon on Star Trek used to blow up enemies. You don’t ever want to lose your sense of humor. Even in the toughest of times, a laugh can be medicine for the soul.

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Living with Epilepsy and Aphasia

Living with Epilepsy and Aphasia – June 14
This has been a good week and a bad week. Oops, I think someone has already started a story something like that (What was it? “These are the best of times and the worst of times.”)
I won’t say the best of times, but it started out as a good week. I have been getting around so well recently without many balance problems that my wife decided that she could trust me at home alone for an hour while she went out to run an errand. (Oops, home alone; again didn’t someone else use that phrase first? Are all the good phrases already used? Isn’t there anything new under the sun? But didn’t Solomon already ask that question?). My maiden solo voyage started out wonderfully. I stayed upstairs at my computer and didn’t try to go downstairs.
Then came the bad part. (“Not the worst of times, not the season of darkness, not the winter of despair” but more like a thunder storm at the end of a sunny day.) When I am sitting at my computer, I have a tendency to revert to my pre-incident days of fiddling with the computer and changing settings. This time I was having trouble reading the small print in emails and web articles, so I thought I will just enlarge the images on the screen. Well, I found the instructions on how to do that and after several attempts of trying to follow those instructions, WHOA, I got larger images. Be careful what you ask for! (Did someone beat me to that one, too?) The images were now so large that pages such as my email list or calendar spilled off the page. Even my desktop was too big for one screen. I thought, if I did this, I can undo it. Wrong. Trying to follow the instructions to change the size of images didn’t work this time. And somewhere in the fray, some short cuts to programs disappeared from my desktop. I even tried using the program listing format of desktop, and as far as I can tell the programs are gone from my computer. They were nowhere to be found. I was able to find Outlook, Internet Explorer, Word, Excel and Debrief, so I thought I can at least continue working on my email correspondence, diary, educational essays, blog and twitter accounts. Not so fast. Because the screen images are now supersized, the save button is no longer visible at the bottom of the screen. That meant that I had to work around and through the two “Save” options available within the task bar at the top of the screen, since I like to save new drafts with a different name than the original. I can’t use a straight forward “Save.” I need to use “Save as.” The help function was of no help because the help button got supersized off the right-hand edge of the screen. I usually keep several copies of essays so that I can go back to previous editions or drafts to see the progression of thought in the essays or email drafts. I find this very helpful in my journey of learning how to write again.
I have to remember that my ability to follow directions (my wife will tell you that it was never great) is now less than spectacular. I need someone behind me or right along beside me, slapping my hand and saying you shouldn’t do that when I try to do something with a very involved set of directions. I don’t seem to have the willpower to monitor and control myself in that way. This reminds me of what my physical therapist kept trying to pound into my head as we worked through my balance tests and exercises. The whole time standing next to me, she would say, “To improve, you need to stretch the envelope safely.” I told her that a light bulb was burnt out in my office and I was thinking about stretching the envelope by getting out a step stool and changing the bulb. She quickly injected, “No, you are not. You are not ready for ladders yet.”
Next week I will relate my travails with my cell phone and PDA, but that will have to wait. Maybe by next week, I will have the computer and the cell phone figured out or I will have found someone who can help me. From what I have found so far, it appears that the PDA is going to be a whole different can of worms (or is it kettle of fish?).
Each year, congress passes a resolution that designates June as National Aphasia Awareness Month to support efforts to increase the awareness of aphasia. June 2010 is National Aphasia Awareness Month. Check the National Aphasia Association http://www.aphasia.org/ website for information about events in your area.

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The Recovery of Aphasia and Epilepsy patients can be helped through the application of appropriate challenges with proper scaffolding

Aphasia and epilepsy patients recovering through the application of appropriate challenges with proper scaffolding
By Baylis
This past week I suggested that I would report on my experiences with my computer, cell phone and PDA. Unfortunately I am not much farther along than I was last week. My computer is not completely recovered. My PDA is not syncing and I can only use the cell phone for voice calls, and not any of the cute applications that the wireless companies keep trying to sell by advertising on television. My conquering of the computer, cell phone and PDA will have to wait for another time. Paraphrasing Chicago Cub baseball fans, there is always next week.

This past week I also reported on a comment that my physical therapist made about my progress. I had been seeing a physical therapist for balance issues that increased dramatically immediately after my seizures. Are they are a result of seizures? No one has been able to tell me definitively yes or no. Circumstantial evidence suggests they might be, since the Increase intensity of the issues happened in the same time frame. Whether they are or not, they are a constant reminder of the ugly specter of seizures hanging over my head.

The therapist’s statement to which I am referring was the one she made related to the fact that I needed to be pushing and stretching myself but doing it safely. When I suggested I was getting ready to use a step stool to change a light bulb, she quite forcefully told me that I was not ready to use a ladder. As I pondered her statements about pushing and stretching safely, several additional thoughts came to mind. One was the fact that in higher education a foundational principle of student development theory is that students should be challenged in an environment that provides proper and sufficient scaffolding. Over ten years ago, I designed and directed a critically acclaimed assessment project that involved fifty Christian colleges and universities. The project was a six-year longitudinal study looking at values development in students. One of the key results of the study was that students were more likely to reach the point of owning their values if they were forced to challenge or to examine their values in a safe environment, instead of being isolated in environments with no challenges, or being challenged with no support.

I also remembered that this principle is a foundational principle in athletics, where coaches hover over their athletes in practice to make sure they are exercising but doing the exercises correctly. As I reviewed the literature from the aphasia and epilepsy associations and organizations, they kept repeating this same idea to caregivers and patients. Patients need to push and stretch themselves to try to regain as much of their former capabilities as they can. These organizations also pointed out that one of the main responsibilities of caregivers was to make sure that the patient was pushing and stretching safely.
My physical therapist was suggesting that pushing myself to do more was important, but not enough. She also was suggesting that I should be stretching myself to do something different. If I just repeated what I could do well, I really would not be recovering my former capabilities. In athletics this principle takes the form of “no pain, no gain.”

This reminded me of what my speech therapist did with me. Prior to the removal of the brain tumor, I had been delivering the Sunday evening sermons in our church. My speech therapist kept pushing me to try to do that again. It took me five months to get up the courage and will to prepare a sermon. That first sermon I delivered in the safe environment of an audience of two, my wife and my therapist. After several suggestions for improvement and several weeks of practice, I felt ready to try an evening service. The congregation was quite gracious in their reception and encouragement. I did a second sermon the next week. After those two weeks I was mentally beat and needed a break. I could not keep up the pace of a new sermon each week. Thanksgiving was fast approaching and because my wife and I wanted to visit our family 10 hours away, I had an easy excuse for a two-week break. After that two-week break, it was the Advent season and the evening services were dedicated to Christmas preparation, so I was not scheduled again until after the New Year. However, I didn’t get a chance to deliver another sermon because on December 30, I had four seizures and spent a week in the hospital.

In preparation for the annual congregational meeting, the congregation finally came to realize that they were asking the senior pastor to do too much and he really did need help. Thus, they took the long needed step of adding an assistant pastor to the church staff. One of the primary duties of that assistant is Sunday evening services. Now after several months of healing, I am feeling the itch to start teaching again. I think I will volunteer to do some occasional adult Sunday school classes to get back into the swing. That will be pushing and stretching me but it will be in a safe environment. I know I am not ready to get back on the ladder of academic presentations. I need more practice first.

I want to go on record as thanking my wonderful therapists for pushing me to stretch myself to try to recover as much of the former me as possible. Without their intervention I don’t know where I would be in my recovery.