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....

Saturday, June 21, 2014

Stroke, Rote learning, and TV remotes!

When I was a child the first time I saw a TV remote I was mesmerized. I was shocked that you didn't have to walk to the TV to change a channel. This was in the late 60s.

When I bought my first TV when I was about 20, the cost to have a TV with a remote was very expensive. 

Fast forward to today's TVs and remotes, it is a given to have a TV remote. TVs, technology, and remotes are expected. They "are" like air and water. Working a TV remote is "rote."

Definition of "Rote:  1 : The use of memory usually with little intelligence; learn by rote.”

It is a very simple yet obscure word. When you have a stroke, the meaning of rote -- "memory usually with little intelligence" -- doesn't tell the whole story.

The first inkling I had about my stroke that early morning when it happened, I could not turn on the TV with the remote.

"How odd," I thought! I used a TV remote thousands of times before. When the stroke happened, the fact that I could not use the TV remote was a sobering first clue that I was having a stroke.

Tried and tried to get it to work. A television remote is rote until the complicated maneuvers made no sense in the midst of my stroke.

When my second stroke happened (in the hospital three days after the first stroke) my TV remote was a clue for me. I could not operate the TV remote even though I was getting better in the hospital. And then "BAM!," I had a massive stroke. Was paralyzed and I could not get to the call button to alert the nurse. I laid helplessly watching TV until they found me.

After that second stroke when I was in the hospital for two weeks, the hospital TV remote was very simple. However, it took me several days to figure out the simple TV remote until it became rote.

When I came home, I was nervous about that TV remote -- the intial scene of the crime as it were! I was very apprehensive to see if I could figure out that damn TV remote.

And I could not. I would try to change channels and I just volume, but I got so confused and angry.

My wife was very patient trying to explain how to use the TV remote. Over and over, I practiced and tell it became rote.

Simple tasks like using a TV remote when you have a stroke is mind boggling. Pun intended! 

Rote is an obscure term until you have a stroke. The brain tries to make new pathways: TV remotes, personal grooming, cooking, driving, having relationships, adjusting to not working again, etc. 

When the fog clears in your head when you have a brain injury, the mind takes over. Rote is the way the brain helps an individual to recover. When the haze clears in your brain, a TV remote is so commonplace that you don't have to think about rote. It just "is".

I'm going full circle. I am channel surfing just like I was that awful morning when I could not figure out my TV remote.

It's good and bad. I am channel surfing a lot. Because I can. The problem is I'm watching too much TV.

Because I can!

Monday, June 16, 2014

Anonymous Blogsphere and my strokes!

It is hard to believe that my strokes happened almost two and a half years ago. Sometimes, it is a distant reality. However, most of the time, this is a vivid and startling reality even now. When I wake up in the morning, I have to realize that this is NOT a dream.

So, how am I doing? It depends. I continue to be grateful for my recovery. Every day, I know that it could have been so much worse. On the other hand, I still have invisible deficits.

I participate in many stroke support groups because, until you have a stroke, no one can really understand the ramifications of strokes, recovery, and deficits.

The National Heart, Lung, and Blood Institute have insightful information about “Life After a Stroke.” Their website is http://www.nhlbi.nih.gov/health/health-topics/topics/stroke/lifeafter.html

The intro says The time it takes to recover from a stroke varies—it can take weeks, months, or even years. Some people recover fully, while others have long-term or lifelong disabilities.

Ongoing care, rehabilitation, and emotional support can help you recover and may even help prevent another stroke.

If you’ve had a stroke, you’re at risk of having another one. Know the warning signs of a stroke and transient ischemic attack (TIA) and what to do if they occur. Call 9–1–1 as soon as symptoms start.

Do not drive to the hospital or let someone else drive you. Call an ambulance so that medical personnel can begin life-saving treatment on the way to the emergency room. During a stroke, every minute counts.”

For me, here are some of the issues I confront everyday:

“Medicines to help you recover from a stroke or control your stroke risk factors.” I take medications to control stroke and seizure risk factors.

“Need to take anticoagulants, also called blood thinners. These medicines prevent blood clots from getting larger and keep new clots from forming.” I take blood thinners.

“Easy bruising.” I bruise so easily now.

“Trouble communicating after a stroke. You may not be able to find the right words, put complete sentences together, or put words together in a way that makes sense.” My biggest frustration is aphasia. Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. To understand aphasia, here are Aphasia Simulations that are helpful:  http://aphasiacorner.com//aphasia-simulations/

A stroke may affect only one side of the body or part of one side. It can cause paralysis (an inability to move) or muscle weakness, which can put you at risk for falling.  My right arm was paralyzed for a time, but I am lucky that it got better. However, I still have issues with balance sometimes and my right peripheral vision is affected. So depth perception is an issue.

“After a stroke, you may have changes in your behavior or judgment. For example, your mood may change quickly. Because of these and other changes, you may feel scared, anxious, and depressed. Recovering from a stroke can be slow and frustrating. Really? Of course this is awful for the most part. Stroke survivors would love to get their lives back. However, life is not fair, and we have to make the most of life though it is different.  
Part of my therapy and my “outlet” for frustration is my blog. I try to make a difference though I realize sometimes it is far too personal. It is odd that I am a private person, however, it seems that a blog is anonymous which is ridiculous!  In the blogsphere, my blog is forever and NOT anonymous.

I will continue blogging for my sanity and, hopefully to help other people. 

For those who are reading my blog, who are you? Why are you interested? Where are you from? I would love to know. However, I understand that concept of "Anonymous Blogsphere!"