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.
Disorder
Facing My Mortality
This recent post http://findingstrengthtostandagain.wordpress.com/2011/09/01/the-evolution-of-normal/
on Finding Stength to Stand Again was most timely for me. I have had a bumpy six weeks. During this time, I have had to face my own mortality. I don’t mean physical death. I know that until Christ returns, everyone must die physically. I saw my father and mother die. I am not looking forward to death, but I am not afraid of death. Since a decision I made as a child, I know where I will spend eternity.
On a two-week trip to visit the kids and grandkids at the end of July, I developed pneumonia and spent four days in a hospital. Because of the cough associated with the pneumonia I had to sleep sitting up in a chair for five weeks. Last week I was finally able to email the grandkids that Pop Pop was now able to sleep in a ‘big boy bed’ After returning home I spent nine hours one day in tests and interviews with a new doctor. At the conclusion of the day, the new doctor told us that it appears that my brain has been “permanently” damaged by the turmor, surgery and seizures. THe doctor was particularly drawn to my description of how I thought after the tbi’s as opposed to prior to them. Prior to the tbi’s I would immediately concentrate on a sequential, systemic or deductive analysis of a situation. After the tbi’s I found myself thinking metaphorically or drawing word pictures of the situation. The doctor told me that I should not expect to be able to think analytically, sequentially or deductively at the same level that I did before the tbi’s. This hit me hard. I know our bodies decay and deteriorate, but my mind was my life for 40 years in the academy.I found it curious to realize that 5 years ago, I was more accepting of the word that my knees were shot and that I would never run and jump like I did playing basketball 5 to 10 hours a week for for 50 years.
Instead of having a giant pity party for my loss, following the exxample of Finding Strength to Stand Again, I looked for alternative approaches. I went out and found that I could use a stationary recumbent bicycle without pain in my knees. I threw myself at that outlet and in three months racked up over 2,000 miles without physically moving one inch.
With this new loss, the doctor tried to be helpful by suggesting that since he and others thought that I could still tell stories well that I concentrate on story telling rather than trying to produce academic documents that weren’t up to the standards requried in the academy. I am still trying to wrap my arms around this. All of my plans for making a difference in higher education seem to be thwarted. If I can’t communicate with the academy in the language it uses how can I expect to make a difference. I will just write my stories and see what happens.
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.
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.
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.
This Is Where It All Began
IIn the aftermath of a traumatic brain episode (a blood vessel in a benign tumor exploded creating all the symptoms of a stroke) I was left with medical and the therapeutic community described as a mild case of aphasia. I know they are correct in that assessment because I know people with severe, progressive aphasia. But for someone who lived off the use of words for 40 years, it completely changed my life.
IAs I reread it, I remembered the conversations that it engendered with my speech therapist when I first wrote it. That reminded me of a comment Glenn Fry of the Eagles made when he came onto stage after an intermission during the concert the Eagles gave during their “Hell freezes Over Tour.” He looked at the audience and slowing said, “This is where it all began.” The audience broke into applause before the band played the first note of the song, “Take It Easy.”
At another point in the concert, Fry gave a hint at the rationale of the title off the tour. He said, “Just to set the record straight, we never broke up. We just took a 14 year vacation.”
The next posting “Words are More Like Cats Than Dogs” is “Where it all began.” As I worked with a speech therapist for months after my traumatic brain episode to try to regain what I thought was passable use of words and language, the following idea started ruminating in my head.
Words are not doing what I want them to do. They are being obstinate and doing what they want to do. Then it hit me. They are acting like cats. They don’t necessarily come to you when you call them. They come to you when they are good and ready to come to you.
As I discussed this with my therapist, she challenged me to describe the process that I was using to try to overcome this apparent difficulty.
As she challenged me to improve, she would have me do exercises over and over again. That’s when I remembered the things that I heard or had been told throughout my life time about practice. Slowly the stories about how and why practice was useful came back. As they came back, I would make notes about them. From those notes came this first essay that described my journey with aphasia.
As a number of individuals have noted, my 40 years in the academy show clearly in my writing. One editor with whom I have worked, accused me of having the Russian novel virus. I can’t say hello in less than 750 words.
However, as many within the aphasia community have read this essay, they have found it very helpful in dealing with their patients or loved ones. This past summer, Dr. Audrey Holland translated my essay into an aphasia friendly format. I encourage all of you to look at her translation. It is found at http://aphasiacorner.com/blog/?s=Words+are+more+like+cats
I have found Aphasia Corner encouraging and helpful. I encourage everyone I know that has the smallest tie to aphasia to subscribe to or bookmark their website http://www.aphasiacorner.com One of the first things I learned is that I am not alone. There are many others who have been touched by aphasia.