Thursday, July 31, 2014

Stroke and Seizure Shorts

Selfie!
When I started to do my blog, it was basically for a diary of sorts. I realized that I needed a way to share memories of our son. Life is short, and sometimes I do not remember funny or insightful things our son says. 

Here are some random anecdotes collected for three months:

“Daddy! When you try to sing, it's like a horror movie on radio!”


Seizure  Shorts
“I'd like to get a rabbit or a video game or a bow & arrow. Never mind. I'm not responsible enough to have a weapon or pet so I'll just have a video game instead.”

Getting ready one morning, Ethan kept trying to find his "seizure shorts." I asked what he meant. He said, "These shorts are neon orange with crazy patterns Dad. They could cause a stroke and seizure like you had!" And he laughed. We all laughed which is a good thing!

Driving with me, Ethan said, “Oh no! I am cursed! I repeat things, I talk too loud, and talk a lot. The Saxton gene!” That is his mom’s maiden name!


I read a study recently saying“Always kiss your children goodnight even if they’re already asleep.” I do that anyway, but I showed that report to our son. He said, “Daddy. If you kissed me when I was asleep, did you give me rabies in the night?  Hmmm?”

In a very serious tone, Ethan said, “I've been swimming so much this summer that my tan line is getting darker. Good thing I don't have a speedo!”

Ethan and his best friend Hayden are dismantling an old bike and old John Deere play tractor to build a go-cart. "Dad! We need a gun turret!!" Wreckage ensues.

One  day, Ethan said, “Daddy! Sometimes I just need to dance!” And he did. I hope he keeps dancing throughout his life.

Out of the blue, Ethan said, “Dad. I am a "slugpire!" That means I am a slug and a vampire. This summer basically I am a slug and I stay up way too late and sleep a long time in the morning! So I made a new word: slugpire!”

Ethan whispered in my ear, “I am simply not here.” Stealth boy.

Pondering what to do next, he said, “Dad. For the go cart I need a transmission and a welder. And probably an engine. Can you handle that?”

Driving with my son, we were behind an old man who was driving too slowly for my son. "Move it old man!” he cried. I responded, "Do you consider me to be ‘old?’" Without missing a beat, he responded, "NO! But maaaaaaybeeeeee” like Dr. Evil from Austin Powers.  

Perhaps I am OLD, but our son keeps me grounded and makes me feel young again! I cannot wait for the next posts I will collected in a few months!

Monday, July 28, 2014

Can you go home again?


What is a hometown? Often I'm asked what my hometown is. I always answer “Twin Falls, Idaho.” 

In reality I moved to Twin Falls Idaho when I was three years old and I left when I was 18 years old. August 7, 1964 through May 28, 1979: 5,407 days or 772 weeks and 3 days.

Since that time, I have lived in Boise, Idaho. Nevertheless I've always considered Twin Falls to be my hometown. I had great memories growing up there.

Last month, I went to Twin Falls for a meeting. I drove past my parents’ house. The house seems the same other than weeds in the driveway.  The circumstances of my parents’ death were difficult because they died 13 days apart. It was worse because some relatives disgraced the memory of my parents’ marriage.

Even though that house is in my stepfather's family now, but I realized that the house is a shell and only memories linger.

It's almost been two years since they died, but the headstones are gray and dirty. There is some water damage also. I said a silent prayer for my parents, and I drove away leaving the flowers behind.

I will never go into that house again.

Mark Dunham, Jeff Hafer, and Steve Wirsching at Steve's Mom's funeral.
Last weekend, I went to Twin Falls for a funeral. The funeral was for a wonderful woman whose life was filled with laughter. Her son and I met when we were in the 7th grade. 

Even now, 40 years later, we are still friends. Our lives went in different directions, but I grateful that our friendship has endured.

Ironically, the funeral was held at the same mortuary where my parents’ services were held. That was hard to take because the vivid memories of my parents’ funerals and the aftermath flooded me with difficult emotions.

As a result, when we drove home to Boise, it was so bittersweet. We drove on back roads all the way “home” and my wife and son humored me as a described traveling back and forth for almost 45 years: Old highway signs from my childhood, old closed restaurants, and riding the bus over and over to visit my dad who lived in Boise after 1969.

I remember all of that like it was yesterday.  But, the people who meant the most to me when I lived in Twin Falls are starting to be “gone” now. Those special people who are dead will live in my memory. The location of a town has no relevance when friends and loved ones are just a memory.

At some point, I wonder if I will ever see Twin Falls, Idaho again. I have started to realize that perhaps my hometown is really Boise, Idaho.



Sunday, July 13, 2014

Really, What IS a stroke?

Brain
I am on the board of the Idaho chapter of the American Heart and Stroke Association. It is common that people know someone who had a stroke. Maybe, an old cousin or a friend of a friend.

Before my strokes, I had a vague concept of a stroke. Old people who did not take care of themselves?
However, now I know the truth about strokes.  
Here is some information about strokes from the American Heart and Stroke Association:
  • Stroke is the fourth leading cause of death in America and a leading cause of adult disability.
  • Up to 80% of strokes are preventable; you can prevent a stroke!
What is a stroke?

A stroke or "brain attack" occurs when a blood clot blocks an artery (a blood vessel that carries blood from the heart to the body) or a blood vessel (a tube through which the blood moves through the body) breaks, interrupting blood flow to an area of the brain.  When either of these things happens, brain cells begin to die and brain damage occurs.

When brain cells die during a stroke, abilities controlled by that area of the brain are lost.  These abilities include speech, movement and memory.  How a stroke patient is affected depends on where the stroke occurs in the brain and how much the brain is damaged.

For example, someone who has a small stroke may experience only minor problems such as weakness of an arm or leg.  People who have larger strokes may be paralyzed on one side or lose their ability to speak.  Some people recover completely from strokes, but more than 2/3 of survivors will have some type of disability.

Stroke 101

Download National Stroke Association's Stroke 101 Fact sheet for more information.

Friday, July 11, 2014

Twister and the Game of Life

My wife and I were thinking about our childhoods. We had siblings. We would play board games and ride bikes.

However, during the hot summer months, it is difficult to play outside and ride bikes. When we were kids, the default activities when it was hot outside was too played boardgames or read books. 

For our son and his generation, they are so wired. Video games, Xbox, iPads, iPods. That is his world.

We are starting to try to break the spell of technology for our son. Though television is technology, we are forcing him to watch a Disney classic movie on Sunday nights. We are trying to play board games rather than watching TV. 

We play Risk, Chess, Go Fish, Old Maid, Clue, Monopoly, the Game of Life, and the like.

Because of my strokes, simple games are challenging for me.

Reading game instructions is difficult when you cannot read very well. If I have to concentrate I usually get a headache. Sometimes I get confused if it is a complex game. Certainly it is getting so much better.

However, we played "Twister" the other night. Twister is a Hasbro game that started in the mid 60's. Twister seems to be a simple game.

But it is not when you have a stroke.

It seems simple enough. Colored dots and simple body parts movements. For example, "blue and left hand."

For me, I need to remember a color, remember "left or right," and "hand or foot!"

Three seemingly simple moves that people take for granted. However when 20% of your brain is gone, the simple game of Twister taxes my brain. And aphasia is a problem!

Trying to play Twister is very frustrating for me. It's just a simple kids game that I cannot play very well! My wife and our son are very patient when I play games with them. 

"The Game of Life?" It's MY life!


Thursday, July 3, 2014

"Where's the REST of me!" and strokes

One of my favorite movies is "Kings Row." In the film, Ronald Reagan's character, Drake McHugh, has both legs amputated by a sadistic surgeon, played by Charles Coburn. When he comes to following the operation, he screams in shock, disbelief, and horror, "Where's the REST of me???" 

After my strokes, I often said to myself, "Where's the REST of me?" 

Though I am getting better everyday, and I have NOT plateaued, I am tired of years of therapy.  I am taking a break from therapy during this summer. Nevertheless, I did have an appointment with my eye doctor yesterday just to make sure that I have not lost ground.

Dr. Scott Lewis and his staff are miracle workers. “Focus Vision Therapy Center” is helping so much. The clinic focuses (pun intended) on children; however, many adults with issues like strokes get much needed vision therapy.

After my strokes and seizures, I lost all hope about reading. It seemed that my doctors’ said, “Well, it’s bad that you cannot read, but it could be a lot worse.”

Certainly, for me, my strokes could have been much worse. However, when you lose the ability to read and write, it is devastating. The ability to read and write was implicit in my “just being.” My profession required reading and writing. My hobby was reading.

After the strokes, so many doctors and therapists tested me in so many ways.

“Can you read? Can you write? Can you do math?”

Ah…no!

As I recovered, I did months and months of all sorts of therapy.

One of the biggest struggles I was occupational therapy. The goal for me specifically was to “get me back to work.” That was incredibly hard. As a trade association CEO and a lobbyist, I made my living making speeches, doing presentations, and juggling intense responsibilities. That was just gone.

My therapist made me try PowerPoint, Word, and math. It was simply awful. I lost so much skill that was second nature. I could not even try to comprehend basic math. My son was in the First grade, and HE helped me do math homework. But, I could not.

Fast forward two and a half years later, I am still recovering basic skills. I “read and comprehend” financials. However, I cannot express “numbers out loud.” I can read documents, but I cannot read out loud at all.

I simply found out that most some stroke survivors and doctors basically have the attitude “well, it is what it is.”

That is not good enough for me. At a stroke support group, I heard a presentation about stroke, vision, and reading. For months, I have been seeing Dr. Lewis and his staff. Even though I took a break for a month, my progress report yesterday was surprising in a good way. I am still getting better.

At the doctor’s office yesterday, I got an invoice. Later, I read the invoice. The fact that I read the invoice was wonderful.

Ironically, when I read the invoice, for the first time, I realized “what is wrong with me!” 

Where is the rest of me?

For example, I have these eye conditions that make reading hard. This is almost an out-of-body experience: I comprehend what is wrong with me, but it seems it is not my body that is out of whack. But it is.

I have:

Visual Field Defects: “The visual field is the portion of the subject's surroundings that can be seen at any one time. The normal extent of field of vision is 50° superiorly, 60° nasally, 70° inferiorly and 90° temporally. A visual field defect is a loss of part of the usual field of vision, so it does not include blindness of either one eye or both. The lesion may be anywhere along the optic pathway; retina to occipital cortex.”

In other words, I have issues with peripheral vision particularly on the right.  

Convergence insufficiency: “Convergence insufficiency occurs when your eyes don't work together while you're trying to focus on a nearby object. When you read or look at a close object, your eyes need to turn inward together (converge) to focus. This gives you binocular vision, enabling you to see a single image. Convergence insufficiency can cause difficulty with reading. This may make parents or teachers suspect that a child has a learning disability, instead of an eye disorder. Treatments for convergence insufficiency are usually effective.”

In other words, reading is a big problem!
 
Double Vision (Diplopia): “Double vision, or diplopia, is a symptom to take seriously. Opening your eyes and seeing a single, clear image is something you probably take for granted. But that seemingly automatic process depends on the orchestration of multiple areas of the vision system. They all need to work together seamlessly.”

In other words, my nerves carry visual information from the eyes to the brain. The brain is where several areas process visual information from the eyes.

I am grateful for Dr. Lewis and his staff. I am incredibly grateful that I have the resources to pay for therapy because many survivors do not have a lot of money. I am incredibly grateful for patient family and friends who humor when I get despondent.

I do realize that I probably will never get back what I lost. But, my motto again, “it could be worse.” 

OK, where is my book?

Tuesday, July 1, 2014

Wearing purple, "Lunatic Fringe" and other rants from the stroke front!

When you have a stroke, I realize that priorities are different. People who survive strokes cut to the chase more often. Often, “filters” are gone.

I remember my mom quoting a famous poem called “When I Am Old” written by Jenny Joseph. Here is an excerpt:   

"When I am an old woman I shall wear purple

With a red hat that doesn't go, and doesn't suit me,

I shall sit down on the pavement when I am tired,

And gobble up samples in shops and press alarm bells,

And make up for the sobriety of my youth.

You can wear terrible shirts and grow more fat,

So people who know me are not too shocked and surprised,

When suddenly I am old and start to wear purple!"

When I read that poem now, my perspective is different. My parents said I was “always the ambassador.” I just wanted people to get along. My career as a lobbyist was well suited for me.  

But now, I simply do not care what people think normally. I am not politically correct often now. It takes too much energy. I do not like purple. I am more candid since my strokes. Some would call these “rants.” 

However, it is my new “reality.”  Here are some random -- very random -- rants:
  • I hate country and western music. Squalling cats and steel guitars. Folk music? Folks! It's worse than country music.
  • I do not like western films. 
  • I am a “Rockefeller Republican.” I am an economic conservative but a social liberal. Keep your politics out of the boardroom and the bedroom. But I am not in vogue now. 
  • I voted Libertarian in the past. But now, the Libertarian and most of the Tea Party folks are simply too extreme for me.    
  • I do not like bigots, and I fear that the GOP is blinded with hatred for gays and narrow mindedness. I consider myself to be a Republican but the "Republican right wing fringe" is not "fringe" anymore. "Lunatic Fringe" is not a bad song from the 80's anymore: It is the current Idaho Republican platform....
  • On the other hand, Democrats think they are smarter than everyone else. They certainly are not. For Democrats, if you disagree with them, they think you are not smart. Pretentious bigotry.    
  • I support the 2nd amendment within reason. I think the NRA has lost a lot of credibility. The President of the NRA, Wayne LaPierre, is an insidious force of evil. 
  • I like disco. Plus, I really like 70’s and 80’s pop music. 
  • Rachel Maddow,  Al Sharpton, Ed Schultz, Sean Hannity, Glenn Beck, and Mike Levin are just the biggest blowhards. Snarky egotistical talking heads with no substance. 
  • NASCAR is not entertainment. I would rather watch paint dry. Rodeo is one step above NASCAR.
  • In general, I do not like fish. Sushi is disgusting. Stop telling me that “just try it.” I tried it many times. Do not ask me again.
  • I eat wheat bread for health reasons. I do not like it. 7 grain or whole grain bread is like eating cardboard and sandpaper.
  • I love Velveeta and Vienna Sausages. Sorry.
  • Wine, iceberg lettuce, peanut butter and celery are not food. 
  • I do not really like organized religions. Keep your views to yourself and to not be so self-righteous. Leave me alone. 
  • I did not really like George W. Bush. His positions like Terri Schiavo issue and the Iraq and Afghanistan wars were simply wrong. I voted for him nevertheless. Better than the alternative. I guess.
  • Barack Obama was so under-prepared to be a president. His résumé was slight. His “time” was right, but he had no practical experience at all. I thought that Jimmy Carter was the worst president until I experienced Obama. His Nobel Peace Prize was not warranted and cheapened that honor.
  • I like TV. I am very well read; however, people who hate TV in general and popular TV shows are pretentious. On the other hand, I really like PBS.
  • People who think that Facebook users are morons are also pretentious. Do not berate me for my views.
  • People think that life is "black or white" sometimes have no compassion and are ignorant. Sometimes people's lives suck. Do not throw stones and judge. It might bite you on your own ass someday.
  • I really do not like to camp, hunt or fish. However, I would love to live in a cabin in the Idaho wilderness. 
  • I have never really liked to golf. One blessing about my strokes, I cannot play golf ever again. I am fine with that. 
  • People who get all of their news from “The Daily Kos” and “Fox News” are not informed. Read A LOT and get many viewpoints. If you have only one news source, do not talk to me. 
  • Reactionary liberals and conservatives will ruin our country.
  • I do not like tattoos. Many friends have them. That is fine for them. However, if you have a barbed wire tattoo, you are desperate. Get a grip.
Wow! I feel so much better. But, it might be the stroke writing....