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http://www.strokenet.info/newsletter
Dancing with Stroke
By Jim Sinclair
Education in Recovery
Little did I think during my career as an educator and counselor that the greatest educational challenge during my lifetime would be after my stroke. I had to be re-educated in terms of all those things that I could no longer do or had great difficulty doing following my strokes. If memory serves me correctly my re-education began with my speech. Shortly after my strokes I learned that while I was considered to be somewhat aphasiac my bigger issue was the paralysis present in the left side of my face, mouth, tongue, and throat.
The paralysis not only affected my speech, it impacted my ability to chew and swallow and contributed to issues such as biting my tongue and inner cheeks. That part of my education, which was the start of my rehabilitation and recovery, began with tongue and lip exercises. As the paralysis began to subside somewhat I was promoted to exercises involving letters and words. The letters B and P became my first challenge.
Once I could reasonably pronounce the B’s I was given words beginning with B to practice repeatedly. At this point ten years later I don’t recall the words or phrases; I only recall that I enjoyed making the B sounds and would lie in bed making B sounds while wondering why someone with three university degrees would be forced to making baby sounds.
I believe that this is when I learned that if I was going to progress I would have to be prepared to do whatever was required of me, no matter how disagreeable. It seemed that I was working on saying P’s forever. Clearly the strategy of learning though repetition was employed when I was required to persistently say “People in Pittsburgh are polite.” While I grew to detest the phrase I continued saying it repeatedly throughout my three month hospital stay since the last paralysis to leave was in the left side of my face and mouth.
This experience has proven to be of unexpected value. In my roles as a Stroke Survivor Peer Support Volunteer, I occasionally make oral presentations to groups. In discussing how well I have progressed I can refer to my People in Pittsburgh are Polite experience and explain that I no longer have problems with my P- P- P’s except for my lack of Patience. My problems are now with my F-F-F’s. When I do Foolish things, I get Frustrated. I frustrate my wife, and a flurry of fowl four letter obscenities flows forth from my mouth.
As I become aware of this after the fact, I do make attempts to subdue my verbal reactions when I realize that I am becoming frustrated. Once I returned home my speech was very low and monotone, so I had to teach myself to project and enunciate so as to be heard properly. As with a great many stroke survivors much of my time in the rehabilitation hospital was dedicated to learning to walk again. While I had been discharged from hospital with a wheelchair and a walker I could walk a little with someone attending to my belt.
I didn’t realize when I first returned home that I had only learned how to sit down and stand up using a wheelchair, which meant that I could only use regular chairs with arms. It was at this point that I learned that following a stroke a survivor may be unaware of certain things that they are unable to do until they are unsuccessful in their attempts. This realization was quickly reinforced when my wife handed me a remote control and asked me to turn on the television.
It looked somewhat familiar but I had absolutely no idea what to do with it and just sat there confused. This set in motion my re-education of all things technological. Once I had mastered the functioning of the remote, my youngest son, who was living with us, took up the challenge of re-introducing me to the computer. My first session was much like my remote control experience in that I stared blankly at the screen feeling that it was somewhat familiar.
I had absolutely no idea what to do until my son showed me the power button. He explained that I first needed to turn it on. Having had my Driver’s License suspended solely on the basis of a doctor’s report of hospital observations, I was convinced that if given an opportunity I could demonstrate that I still had the ability to drive. Once I was given authorization to initiate the process to re-acquire my License I was able to pass the written portion of the exam.
I did so by dedicated repetitive studying of the material. During the road portion of the exam I had no idea that I had lost the ability to drive until the Driving examiner reached across to take control of the car. Once I completed a series of driving lessons, I successfully passed the road test. It wasn’t until after three years of driving that I realized that there was something not quite right with my driving. I quit driving for two years while I worked on improving my focus and concentration to the point that when I drive my entire focus is on my driving.
Much of my time during the first few years following my strokes was dedicated to re-learning many of the very little things that I didn’t realize I was unable to do until I had occasion to try. Slowly over time there became less and less that I needed to relearn. Two and a half years ago, I had my first post stroke opportunity to walk barefoot on a sand beach and discovered that I was unable to do so without almost falling over. I was confident that given time I could re-learn how to walk barefoot in the sand.
Once I learned that I could manage the same walks if I wore my sandals I felt there was no reason to work at walking barefoot. My most recent post stroke learning relates to my struggle with F’s as previously noted. Recently feeling that I should probably do something about the 4 letter F words that will occasionally be part of my speech, I believe that I have learned something new.
As with many stroke survivors there was a lengthy period post stroke when I would burst out crying for no apparent reason. I reached a pint when this frequent crying simply stopped. I now believe that much of the crying was the result of the frustrations and my inability to express them in any other way. If my occasional salty language is the manifestation of my frustrations this is much preferable than the crying.
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