Tuesday, July 18, 2017

I Have Functional Aphasia

I wrote this yesterday in my frustration.  It seemed to me that I was not taking seriously by my "friends" in my new home area of New Mexico.I was feeling that my comments and suggestions are not considered. Treated like a "country bumpkin" instead of the intelligent college educated senior.
I have functional aphasia...
My aphasia was caused by a stroke where I piece of my heart valve broke off and when into my brain. I was lucky to be in the hospital when my heart went South. The stroke on the left side of my brain left me with “functional aphasia”.
For some reason, health care professionals seem to avoid telling us that we have Aphasia.
I first remember hearing that term when reading a proof copy of “Let Me Die Laughing” by Megan Timothy. (Crone House Publishing, 2006). It sounded like I had some similar symptoms. I do not recall any reference to aphasia in the hospital or with my speech therapists.
It was time to surf the web to get more information. I found just what I was looking for. There is a wealth of information on the National Aphasia Association web site. (http://www.aphasia.org/)
Aphasia causes problems with processing language. It does NOT diminish intelligence. I know what I want to say, it just does not come out. My friends know about my speech problems. They know how to work with me. My problem is when I meet and converse with people that do not understand what I have gone through and how it is difficult at time to speak. They think that I am uneducated.
This really upsets me. In Junior year in high school, I won the county math contest. I was the was the #1 boy (5th overall) graduated in my high school senior class of over 160. That was in the collage-prep curriculum, including 5 year’s worth science courses and 5 math (including calculus) courses. Case Institute of Technology gave me early acceptance to college for Electrical Engineering.
My stroke was bad enough, that I had to relearn to read, understand, speak, and write.
In the hospital, the speech therapist started right away. I would hardly able to stand or walk, but they started working with my language skills. Some days I wished they would just leave me alone. I was tired, sore, not looking for a talk. But they preserved, thankfully.
Every time they came into the room, that asked my name, birthday, and some other questions. Really, at first, I did not the answers to those questions. At least I was unable to communicate to them.
Now writing, that was a trip. I could mimic writing a letter, but did not remember how to I used to write them. (That’s 1 letter, not even word or sentence). Same for numbers.
I don’t remember if we used flash cards in the hospital, probably we did.
It was frustrating, to look at something, know in my mind what it is, but just could not vocalize to write down what it was.
About the day before I was to be discharged from the hospital, I was able to really write my own name. I should say “scrawl” my name – to a point that I recognized my signature.
With discharge from the hospital, my treatment changed with VNA. Sessions were held 3 times a week for nearly an hour. At the end of a session, I would have a headache.
We would start the conversation, how have I been, problems with my language, others. There will be work with flash cards. One deck were pictures, which I had to say what the item is. Another deck was of words, which I was to say. I was not looking forward to those – that really taxed my brain. But each session I was doing better, running through the cards faster.
There was a time for working on my writing skills. That started practicing writing single letters, progressed to words, and on to simple sentences. Most days there was homework to be accomplished before the next session.
When a line for meds was removed, I was not longer under the care of VNA. My Speech therapy was transferred to Jenny Edmonson Hospital.
After my speech therapy, I continued to work on my speech (and especially writing skills). I continue constructing my website. I started a cycling (which has turned into a general topic) blog. I have been working on writing my memoirs.
The problems with perception with other folks continue. At times I am happy that people do not understand that I have these speech problems. Other times, people make fun of me when I choose the wrong words or have problems pronouncing the right words. At times, I feel that my thoughts and ideas are not considered, because of my speech problems. Even when they are written down, they are ignored.
My aphasia is manifesting it with:
Problems with numbers – I am an engineer. Numbers were easy for me. Now I struggle with adding tips on a restaurant bill. I used to be able to add dimensional lumber in my head – I have given up on that.
Fast talkers – I do not like people that seem to in a hurry when they talk. It takes time for my brain to process the sounds. Then, when I ask folks that talk slower because I am having problems understanding then, invariably the talk louder, not slower.
Telephones – Sometimes it is difficult to understand speech on the phone. Really difficult to write down numbers when speaking on the phone.
Background – If more than 1 conversation going on, the person I am talking with needs to talk directly to me. If not, mostly I will not hear/understand you.
Noisy Places – Crowds and noisy places – forget it. It takes me a lot of concentration to hear and process speech. And, I get a headache.
At times, I get assembly directions wrong. My mind thinks it knows what it's doing, but ends up wrong and I re-assemble things a couple times.
Here’s how you can help (me) a person with aphasia:
Speak slowly and succinctly.
Look at the person, speak to them. Establish eye contact.
Make sure you have their attention.
Turn down distractions (radio, TV, etc.)
Give the person time to speak. Do NOT finish words or thoughts for the person.
Do not ridicule the person when they use the wrong word. Do not correct it unless the person specifically asked for help
Communicating is always a task for me. I have been working on this for over 12 years. Some days are better than others. First thing after getting up and when tired at the end of a day, my speech goes out. All as I ask is that you consider what I have gone through to get to my current level of speech, and not ridicule me.
Tom Winfield