Tuesday, September 8, 2015

Strokes, Aphasia and Football!

Three recent events made me realize that I have come so far since my strokes. On the other hand, I also know what I have lost. My recovery is bittersweet.

The three events were:
  • The Western Idaho Fair
  • The “Saving Strokes Golf Tournament” sponsored by the American Heart and Stroke Association
  • The opening game of the Boise State football season
I have gone to the fair and Boise State football games for decades. My friends and I have loved to attend those events.

Those three events tested my ability to participate for many reasons.  When you have strokes, you are very sensitive to your visual and sensory perceptions. Therefore, I need to keep distractions and noise down.

The fair and the football games were sensory overload.

At the fair, it was hot. People were everywhere. The sounds and the lights were intense. In addition, because of my strokes, I have vision loss. Mainly, my right peripheral vision is gone. I was careful; however, I was jostled and bumped. I was so hot that I was worried I might have a seizure. It took a few days to recover.  

I did attend a game after my strokes. I was honored to be one of the 2012 Boise State Distinguished Alumni. At halftime, I was on the field. It was an honor. However, part of the perks of that award was being in a suite rather than in the stands with bleachers. In the suite, crowd noise were muted. I did not notice noises. 

Going to the first game as a regular fan last Friday was physically and emotionally horrendous. 

Tailgating was a haze of lights, colors, loud crowd noises,  etc. That was just the tailgating!

BSU Game September 4, 2015
Climbing to the top of Albertson’s Stadium was even worse. The chant -- “Boise! State!” -- hurt my ears. The nonstop light’s from the scoreboard, the massive loud crowd noise, and my lack of depth perception because the loss of my right peripheral made me actually scared.   

I had to leave at halftime. It took me three days to recover.

Two days before the game, I participated in the American Heart and Stroke Association “Saving Strokes Golf Event.” Though I cannot golf again because I had a torn carotid artery which caused my strokes,  I helped plan this event. It was for stroke survivors and their caregivers.  The point of the event was to raise awareness that people who have strokes can be active again.

The organizers (which I realize would be “ME” because I am on the Board!) asked me to speak about my strokes.  I am actually tired of talked about my strokes. It’s been almost 4 years. Nevertheless, I do those presentations to try to give hope.

Just preparing for a simple presentation is tough. As I explained when I did my speech, when you made your living doing speeches and presentations and you lose ALL communication because of stroke,  it was especially hard to talk about “me.”
The aphasia makes it difficult to read so rehearsals are not really possible. The aphasia also make “word finding” challenging.

I did the presentation. I got flustered at the beginning which compounded my frustration. A hallmark of aphasia is “l know what to say, but I could not get the words out.”

Here is a video of the presentation:

There are some tips that I should have done before my appearance. Of course, I did not prepare enough obviously! 
  • Give you plenty of time to answer questions and allow time for you to understand instructions. After a stroke, it will take you longer to process what has been said.
  •  People who have had a stroke may have speech or language problems. Here are some tips for your family and care givers:
  • Use simple words and sentences, speak slowly. Ask questions in a way that can be answered with a yes or no. When possible, give clear choices. DO NOT give too many options.
  • Break down instructions into small and simple steps.
  • Repeat if needed. Use familiar names and places. Announce when you are going to change the subject.
  • Make eye contact before touching or speaking if possible.
  • Use props or visual prompts when possible. DO NOT give too many options. You may be able to use pointing or hand gestures or drawings. Making a book with pictures or words about common topics or people will help to communicate better.

After the event, I was talking with a nurse and I said, “It seemed like I was NOT a stroke survivor. Rather, I was just helping out like I did throughout my career.”

It seemed “normal” other than my halting speech.

Those three events – the fair, my speech, and the game – wiped me out more than I thought. For days, I got headaches and needed more rest.

I think I am human after all. "Abnormal!"

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