Tuesday, December 31, 2013

Stan Dunham was a great guy!

20 years ago today, our Dad’s funeral was held. It does not seem possible that it was so long ago.

Yesterday, I went to his grave to honor him. The brass plate on his “niche” is faded now, but the memories are still fresh.

I remember the funeral like it was yesterday. It was packed, and so many old “Buttrey Food’s” colleagues were there. It was a testament for our dad who every liked.

After my second stroke, when the nurses were rushing me to the MRI room, I remembered that dark hallway. It seemed like they would never get to me even though I know they were swiftly hurrying along. At that point, I felt that my Dad was saying to me, “You will be OK.” 

Who knows if that was true or if it was a figment of my imagination? But, Dad helped me in those dark hours. Just the thought of my Dad helped me so much. Thanks Dad.

Dad was a great friend, a cool guy, smart, funny, and irreverent.  

Sunday, December 29, 2013

“Wish You Well” by David Baldacci and strokes

“I read a book.”

The fact that a read a book seems trivial until you realize that I haven’t read a book for two years because of my strokes. Reading was my hobby, and that fact that I could not read anything is demoralizing for me.

It took me several months to complete the book. I often thought I would not do it. But, I had incentive because a long lost relative gave a book to me hoping it would give me incentive to read a certain book called “Wish You Well” by David Baldacci. 

First published in 2001, the story starts with the Cardinal family moving from New York to California due to money problems, then shifts to the mountains of Virginia after a car accident leaves the father dead and the mother paralyzed. The time period is in the 1940s.

It was incredibly difficult for me to read that book. I used to read so fast. Now, I do reading therapy, but I still get frustrated. To read at all, I need to have no distractions and I need to read very slowly. I have to read every word. If not, I have to back track. The process is humbling and maddening.

But, I did it for several reasons. First, I just wanted to prove to myself that I could to it at all. The second reason I had to read that book was to have a connection with my mom.  When she was on her death bed, Mom told me I should write a book about my strokes. I have a goal to do that -- when I can.

When Mom was dying, I asked Mom about her family often. She did not want to discuss it because she had a horrible childhood. When she was a girl, betrayal, beatings, and horrifying circumstances were her lot in life. I wanted to find out about her mother’s family. She found her mom when Mom’s was 22, and it was not a story book ending. I wanted to find out if there were any signs about strokes in our history. Mom gave me an address for a forgotten half-sister. Their “mother” died of an cerebral hemorrhage.

After Mom died, I started to research about Mom’s family. Through Mom’s half-sister, I found a woman who was Mom’s cousin. Out of the blue, I called her. It was a shock to her. They assumed the baby was adopted. I visited with her several times, and we met in May.  It was a great visit though we were sad that Mom did not live long enough to meet her cousins.

That cousin sent “Wish You Well” to me last fall. She sent a letter with the book, and in part she wrote, “I felt the connections of finding long lost relatives or in our case unknown relatives. I know that reading is difficult for you at this time.” She continued writing, “I thought of you in the courage displayed by the characters in the story. After your strokes, many people would have given up but you have fought your way back against all odds and now your story till help many others. I can’t tell you how proud I am of you.”   

That note meant the world to me. Through lost decades, her words encouraged me to read that book. Her note was a placeholder in the book. When I thought I could not go on, I read – slowly and halting -- that note, I persevered. It seemed that Mom was channeling her.

This book is filled with family history, tragedy, a stroke, and hope. It was a stunning book for me to read in so many ways. 

Saturday, December 21, 2013

Ralph Waldo Emerson and “It’s A Wonderful Life.”

One of our favorite movies is “It’s A Wonderful Life.” Every year, my wife and I watch it, and the story of a man who is so hopeless that he contemplates suicide until an angel shows him what the world would be been without him.

Last night, when we were watching this holiday favorite, my wife said in a nut shell, “You have a wonderful life, and you have helped so many people. You should know that. The thread of your life has helped countless people. You are George Bailey.”

Sometimes when I feel sad and lonely because of my strokes, iut is reasonable that I feel sad. In darker moments when I wonder what my future holds, I do harbor the notion that if I was never born, it would not matter at all. Of course, those moments are fleeting because I love so many people. I could not imagine not being part of my world and life.   

I do try to help other people. I have tried to mentor people. I volunteer a lot because I think I make a difference. When people ask me why I care for so many other people, I think of Ralph Waldo Emerson and his quote:   “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”

The issues and deficits I have because of my strokes really made me think I cannot make a difference. I thought my life was over in so many ways. In the beginning, I just needed to heal. When I started thinking again about my relevance, I assumed I could not help anyone.

A great friend of mine is a lawyer and a lobbyist. He would not let me feel sorry for myself. He said, “You will lobby again.” He provided an office and opportunity. He said “Just be visible. Even though you cannot read, you have so much knowledge and contacts. Do not sell yourself short.”

His confidence in me helped a lot. It is gratifying because I helped him get started in his career.

People like him, my wonderful wife, my brothers, and friends, told me that I can contribute even though I still need time to recover.

Because individuals like them, I had the courage to confront my fears. Sure, I have difficulty speaking and expressing a lot, I have been appointed on several boards like Idaho Housing & Finance and the American Heart and Stroke Association.  

I am still trying to make a difference in life. I have a wonderful life. 

Wednesday, December 18, 2013

A friend of mine died last week….

It was a shock. It was a routine surgery on her knee and, in the middle of the night, a blood clot ended her life.

I was not a close friend, but she was a vibrant person who knew everyone. Her laugh was infectious! I went to the funeral because I needed some closure. “Closure” in the sense that she is really gone.  A bright light is gone. 

She was alive and now she is not. How does that happen? Why? 

Another friend of mine had a stroke several years ago.  Now, she has been diagnosed with breast cancer. 

Another Facebook friend just told her contacts that her brother had a stroke 3 months ago, and he had another one this week.

I had an appointment this week with a therapist, and he told me that one of his other client's has a son who has colon cancer…terminal.

The common denominator is they are young. Like me.

In the 90’s my father died and I got divorced. I was despondent. I great friend sent a book to me:    “When Bad Things Happen to Good People” is a 1978 book by Harold Kushner, a Conservative rabbi. Kushner addresses in the book one of the principal problems of theodicy, "the conundrum of why, if the universe was created and is governed by a God who is of a good and loving nature, there is nonetheless so much suffering and pain in it - essentially, the evidential problem of evil."

I hated that book. It is utter BS. A stupid book.

When bad things happen to good people, it is just life and death. Some people think this is “God’s will” or “God’s plan.” Some think this is fate. Some think nothing at all.

My mother was a devout Catholic. She prayed often. When my strokes happened almost 2 years ago, Mom prayed a lot. Everyone prayed. I prayed.
My recovery surprised everyone including my doctors. 

Mom, on the other hand, simply believed I would get better. In my Mom’s reality, she had a personal relationship with God. Mom prayed to God to spare her little boy. Mom prayed over and over “Please take my life in return and spare my boy.” Me.

Mom was a great healthy specimen. At 79, she walked a lot, did not drink and smoke, etc. Everyone thought that Mom would out live all of us. But, 4 months after my stroke, Mom was diagnosed with ovarian cancer. She died several months later. Thought out those horrible months as she was dying, she often told me that “God” spared me and took her in return. 

I humored Mom even though that quid pro quo – my life in return for her death – was abhorrent to me. It gave her comfort thinking that God spared my life. Now my mother is dead at 80.

For me, I hope that God would not bargain with life and death. I am sure that God helped in my recovery but not because he took the life of my Mom. 

The concept of God has always been the forefront of life and existence. People need God. In ancient times and now, people need the concept of God for comfort, solace, and redemption. I talk to God. I pray for others. I pray for me. I have read many books about God trying to figure out my relationship to God or fate or whatever it “is.”

Soon after my strokes, I “read” an audio-book (I still cannot read because of the strokes) by Eben Alexander III is an American neurosurgeon and the author of the best-selling Proof of Heaven: A Neurosurgeon's Journey into the Afterlife, in which he describes his 2008 near-death experience and asserts that science can and will determine that heaven really does exist.

It was a great inspirational book. I hope it is true. If what he writes is true, heaven and God do exist in a form we cannot imagine. The concept of death it not frightening at all. Rather, it is part of the journey.

But, the pain and suffering that we have to deal with is horrifying to get to Heaven.  I think of the people I mentioned how are suffering. I think of Mom making a bargain with God.

It is just life, and shitty things happen all of the time. Life and death. 

Saturday, November 30, 2013

My Stroke Story: A video for St. At's in Boise, Idaho

St. Al's is a local hospital in Boise.  When my first stroke happened, we went to St. Al's.

I was honored that St. Al's used my stroke story for the annual Festival of Trees, a huge fundraiser the raises money for specifics projects. This year, the focus was their ER services. Here is the four minute video:  

Mark Dunham at the Festival of Trees

Even now, this video is surreal. It seems like this is another person's story. 

The goal for me to agree to relive this bad experience was to help other people. I know that other stroke survivors often feel that the have no hope. My hope that this video will help people about recovery and possibilities. 

Never give up. 

Wednesday, November 27, 2013

"Sybil" and My Brain: I have is a Imaginary Friend

“Sybil” is a 1973 book by Flora Rheta Schreiber about the treatment of Sybil Dorsett (a pseudonym for Shirley Ardell Mason) for dissociative identity disorder (then referred to as multiple personality disorder) by her psychoanalyst, Cornelia B. Wilbur.

The therapist called the woman "Sybil" to protect her privacy.   Originally in treatment for social anxiety and memory loss, after extended therapy Sybil manifests sixteen personalities.  I loved the book when I read it in high school, and I loved the miniseries.

I never really thought about my brain. You take your brain for granted. It is a bunch of complex cells, but I didn't comprehend how much a brain really “does.”

In school, I had to study the brain.  I took psychology and biology. But the concept of a brain was so clinical. The structure of the brain was a just a topic to study.

When my strokes happened, it galvanized my thought process. This is my brain. Something is wrong with my brain. What! Why? Me! No way!

Now, it seems that my brain is like my secret identity. I am “Mark.” My brain is someone else entirely. Perhaps “his” name is “Todd” which was one of the choices our parents told my brothers they could name me: “Mark” or “Todd.”

Because of my strokes, I am so in tune with my brain. It seems like I have conversations with my brain all of the time. If I had a headache, in my head, I talk to “Todd” saying something like “No way Todd. We are fine. Stop this!” It is like have an imaginary friend.

Sometimes I argue with my brain, my imaginary friend. In my head, I think about my healing brain…wondering if the neuro-pathways are rebuilding. Every day, I sense that my brain is struggling to find new ways to circumvent the damage in the dead part of my brain. 

Sometimes, I pause and I consider that the brain is am miracle in so many unknowing ways. I am not a patient man, but I realize that my brain – perhaps my imaginary friend – working overtime to heal me. I check in occasionally in my head saying “Keep up the great work. No days off!”  

It is like I have an out of body experience. Maybe this is my coping mechanism.  

Maybe I am crazy after all.  

Saturday, November 23, 2013

"Thor" and saying "I love you" to my son

Today, my son and I saw a movie, "Thor." My son and I have seen so many movies on the big screen since my stroke. This is our tradition. This is my recovery.

I love my son. Watching him grow his heaven to me. 

Sometimes I just watch him sleep. I watch The curve of his face. I watch the color of his brown hair that reminds me of my father's hair.

The best times for me, is on a Saturday morning. Though he's almost 9, he snuggles up to me. I stroke his hair. I look at his eyes seeing the same green as my wife's eyes. He has the same eyebrows as I had when I was a kid. He has subtle dimples. He has dark eyelashes that are long. 

Funny? He's incredibly funny. He is irreverent even though he doesn't know what that means. 

He dances around the house  in the morning and when he's getting ready for bed. I want him to keep dancing through his life.

I watch him so closely because I almost lost him because of my strokes. I concentrate so much so I can always remember him at every age.

If I have a headache, sometimes I wonder if another stroke will happen again and I think of my son. I want to watch him grow up.

So thing does happen to me, how can I ever explained to him how much I love him. There is no words to describe how I feel about my son.

A lot of my therapy is because of my son. Therapy is incredibly hard and sometimes painful. It's worth it.

When I watch a movie with him, I love that he laughs and giggles. Or when he raises his eyebrows. It's like a facial giggle! Or when he wants to make a point in a movie saying in a very serious way "Daddy. You know this is very real don't you?" Even when I know this is not real. I love that his mind is always exploring possibilities.

Every day I say I love you too my son. My dad wasn't comfortable saying I love you until when I was about 20. I decided to hug him and tell him that I loved often. I knew that he was uncomfortable with that, but he embraced hugging soon after my 20th birthday. He loved to hug!

When you have a life threatening health issue like a stroke, you do not take anything for granted. In a sense I am living on borrowed time and I will make the most of it. 

I love you Ethan. 

Thursday, November 21, 2013

Easy Street and strokes....It is NOT easy at all!

"Rehabilitation Easy Street" is on the third floor at St. Alphonsus Hospital in Boise, Idaho. “Easy” is a misnomer for me. Nothing was easy about my rehabilitation in the early days.

My room was on the fourth floor, and my therapist told me that we had to walk down one floor to “Easy Street” on the stairs. I had to use a harness so I wouldn't fall.

On “Easy Street,” there is a general store sponsored by the Albertson's Corporation. In reality, there are shelves and plastic products.

My therapist told me that I should look at item on the store shelves. What is toothbrush? Deodorant? Envelops? Fruit? I was dumfounded. I had no idea what those things were. Of course I had no concept of an alphabet.  I could not remember my name let alone saying obscure terms like deodorant

My therapist told me that I needed to concentrate on the plastic fruit.  I would look at an apple. I had no clue what “apple” was. The therapist said,  “what is the color of an apple?”

No Clue.

“Look at that fruit. What is it? That an orange? Is orange color or a fruit?” What the hell! Orange is a color and a fruit? What a diabolical plot! That conversation made my head hurt.

Some therapists would ask me about my life. “What do you do for a living? What about your family?” I knew I was the Executive Director of the Idaho Associated General Contractors and I was on the Board of the College of Western Idaho. But I could not say that because I could not speak. That was incredibly frustrating. Now, I realize this was not a plot. Rather, it was forcing me to start speaking, forming words, etc.  

My hospital therapists were incredibly caring but they made me do a lot of things that I wasn't prepared to do. They challenged me a lot.

In those dark days in the hospital, I was so despondent. Depressed was an understatement.

So when my therapist would say “do this” or “try this,” etc, in my head I often was thinking “what's the use! Part of my brain is gone. Just leave me alone. Please! Maybe I should just die!"

But they wouldn't leave me alone. Every day, several hours a day, they had me  doing things then I didn't think I could ever do again.

My room was my sanctuary. Filled with flowers and overwhelming stacks of cards of concern, I would sit in my room wondering what my future would hold. Often I just wanted to be alone.

My world was a 12 x 18 room. In my room, I could be alone. I didn't need the harness that nurses and doctors insisted that I use everywhere else.

I remember one evening, I had my dinner and my wonderful wife called me. We agreed that my family would miss that night because my son didn't want to go to the hospital. Our six year old was scared and tired of the play dates that kept him busy. 18 days in the hospital. 13 play dates. I understood, and in a way I really didn't want to see him because I was so damaged. So, alone that night, I  silently wept.

The nurse checked on me, and she said, “I'm so sorry! Can I help in anyway?”  “No,” I said. “Just want to be alone.”

To say that I had highs and lows in those days, is not true. I do not think there were any “high.” Even though I had the support of family and friends, I tried to be strong for everyone, but sometimes I wanted to wallow in my self-pity.

But a therapist would come in, and say something like “we're to do this today. Get ready.”

It was grueling.

Now 22 months later, my recovery is so grueling even now. But every day I can see a change. Every single day. Though therapy was torture, those therapists changed my life.

Compassionate. Stern. Patient. Pragmatic.

Therapists have a special place in heaven.

Wednesday, November 13, 2013

Hypnotherapy, Pink Floyd and Corpus Callosum

Pink Floyd is one of my favorite bands.  When I was in college, I used to study and listen to Pink Floyd. One of my favorite songs was “Brain Damage.”

“The lunatic is in the hall.
The lunatics are in my hall.
And if your head explodes with dark forebodings too
I'll see you on the dark side of the moon.

That song resonated even before I had two strokes. Now, “Brain Damage” is very ironic considering I do have brain damage!  The lyrics are fitting because my head exploded with dark forebodings that scared me so much because I thought I would die.

It is hard for me to realize that I do have brain damage.  In some obscure way, even now, I do not think this is me. But it is.  About 20% of my brain is gone.

I am so grateful that I have the tenacity to try anything that will help me recover. In the hospital, a therapist told me that I would never drive again because of double vision and limited vision on my right side.  A doctor told me that I could never work again because of the damage.  “Just realize this is your life and basically take it easy.” One doctor told my wife and I that I “had to have memory loss” because they scanned my brain (a lot!), and they knew I must have memory loss. My right arm was paralyzed for a while, and some thought I would have some limited mobility issues.

They were wrong. I recovered all of those things that they said were impossible.  They just do not know me and my support systems! I have been beating the odds so far, and I will never quit. Ever.

One hurdle that I will want and need to conquer is reading and hand writing.  I was a speed reader. I love to read, and I would read several books at a time.  The fact that my hobby was reading and my profession required a lot of reading makes this challenge even more important.

I cannot take notes like a Power Point. I just cannot hand write anything. I cannot read aloud. I can comprehend everything, but I cannot express it…reading, hand writing, math, etc. There is a disconnect in my brain. I'll see you on the dark side of the moon.

I was researching strokes and vision because I have vision loss.  (It takes me a long time to read anything!) I happened to read several studies about strokes, vision, and hypnotherapy.  I have no qualms trying unusual therapies. Right arm is weak because of the stroke? The key is acupuncture! So why not try hypnotherapy to see if I can read fluidly again.

One website said “This stroke program is an amazing process to teach the brain how to repair damage from stroke or brain injury. This program asks the brain to electrically reconnect the wiring, find new areas of the brain to perform certain functions, and heal the spirit. After a part of the brain is damaged, another part can begin to take over the function. As the brain practices, during hypnosis, it uses a new area to produce speech or movement; it strengthens the electrical signals to that new part of the brain, and then grows new connections from that part of the brain to the function that is needed.”

have had two appointments with my hypnotherapist, and today we concentrated on reading and bridging the gaps in my corpus callosum. It is a wide, flat bundle of neural fibers beneath the cortex  and it connects the left and right cerebral hemispheres and facilitates interhemispheric communication.

During this session, we worked on my capacity to make new pathways in my brain. I will focus a lot of my energy trying to bridge the damage in my brain.

I really believe that this is possible. Just like many people told me I cannot recover fully, I cannot accept that possibility. 

My life is about possibilities. 

Wednesday, October 30, 2013

The Addams Family and Ideational Apraxia

I have blogged about apraxia before.  The clinical definition is: Ideational apraxia (IA) is a neurological disorder which explains the loss of ability to conceptualize, plan, and execute the complex sequence of motor actions involving the use of tools or objects in everyday life. Ideational apraxia is a condition in which an individual is unable to plan movement related to an object because he has lost the perception of the object's purpose. Characteristics of this disorder include a disturbance in the idea of sequential organization of voluntary actions.”

When my strokes happened in January, 2012, I was paralyzed in my right arm. My right arm was useless. It came back quickly, but in the hospital, I would look at my right arm and it seemed that it was NOT my arm.  Over and over, I would move that phantom arm because, it did not seem like it was attached to my body.

It was like “Thing” from “The Addams Family.”  A hand with a life of its own.

When I got out of the hospital, right away, I got acupuncture and massage for my right arm. I firmly believe that those unorthodox therapies made a huge difference in my recovery. Sometimes, I need more acupuncture and massage because sometimes my  right arm seems weak. 

Most people do not know that I had paralysis because I look “normal” but, in the night, when I lay wrong – “my arm is asleep” – I jump out of bed because I think that stroke will happen again. Then I settle down, and realize it nothing.  

However, there are still residual issues. Months ago, I could not put on my right sock in the right way. I put the heel upside down. It took my son to help me overcome that issue.  

But I still have a semblance of Ideational apraxia:  

When I drive, I cannot park correctly!

A parking stall is should be perpendicular:  An angle formed by the perpendicular intersection of two straight lines; an angle of 90°.”  But when I park, the angle more like 85°!

I try and try and try. I over compensate, but my angle is always off.

Oh well. It could be worse. I can parallel park very well!

Monday, October 7, 2013

Dynavision, stroke, and a church parking lot

When my strokes happened, I was not thinking about my vision.  When you dodged a bullet and you thought you would die, the last thing I thought about was my eyesight.

During that awful 18 days in the hospital, I had so many tests. To say that I was poked and prodded is an understatement. There is no shame and no privacy in a hospital. 

When my strokes happened, I was a zombie.

Test my blood pressure. Sure! “What is blood pressure?” Of course, I could not even say “blood pressure” because I could not speak!

“How is your vision” the doctors asked? How would I know! I had double vision and I was very groggy. 

Afterall, I almost died!

It became very clear that I had some vision issues.  One of my therapists put me in a small room, and hurriedly told me that I needed to do this test called “Dynavision.” 

I have always been a skeptic. I need to be shown rather than follow blindly without an explanation. That was a major problem for me at the outset because the just basically told me to “do it.”

Do what?  Tell me first! Then I will try it. But, I could not explain what I was thinking and meaning.

After several tests on the Dynavision, one therapist told me bluntly “Mark, you should know that you probably will never drive again.”  The news just got better and better....

I was just trying to grasp the strokes, and this was a body blow.

Fast forward when I got home on those cold January days, I was so scared even riding in a car. I would gasp and close my eyes. 

In February, my wife drove our son to school and I rode along. Heather said, “Do you want to even try driving?”  The therapist words hung in the air, and I said, “I cannot even legally drive."

There is a church parking lot by our house, and Heather said “Just try.”

I drove halting around the parking lot. I was scared and devastated. What is “park and drive?” No way!

The fact that I would never drive again was such a hard reality, but I have so many new realities.

I got out of the hospital on January 27, 2012, a Friday. On Monday morning, I entered Saint Alphonsus Rehabilitation Services (STARS) where I went for at least 200 therapy sessions. Their website says “Care often begins immediately after your injury and continues through each step of your recovery. Our multidisciplinary teams create and manage your individual therapy program, involving your family as an integral part of the team and linking you to community resources.”

Over several months, I worked so hard and my wife was so wonderful. She drove me everywhere and never complained. She was so supportive.
In about June, I started vision therapy. And the dreaded Dynavision was again my nemesis. Over and over and over I did it. Over and over and over.  But, it got better. My results got must better and more impressive. 

Finally, in October, my therapist said “I think you can drive again.” I almost cried.

And I did!

It has been a year. The church parking lot is a constant reminder of what I have gained -- and lost in some respects.

20 months. Wow!

Friday, September 27, 2013

Little boys,Sugar Smacks, XBox and World War III

When I started my blog, it was to be somewhat like a journal about my son.  For several years, the focus of my blog was my family. 20 months ago, the focus changed because of my strokes. Nevertheless  sometimes I go back to my original  idea and I  post "stuff" about my son.   

One evening when we were getting ready for bed, I asked him what he would want for breakfast the next day. He said, "Corn puffs."  I said that is not a good breakfast. He said, "Dad! This is a complete, wonderful breakfast." I reminded him that when I was a kid it was called "Sugar Smacks" and the new name is a marketing ploy. Ethan responded saying, "Well, Daddy, your are old and they are very new nutritious."

I was watching a PBS show called "Rick Steve's Europe." Ethan said, "What is that show? Torture?" I never told him about "Lawrence Welk" which was torture when I was a kid!

Heather commented that she pulled bunch of weeds out the neighbor"s driveway. Ethan said, "Seriously, Mom! What is wrong with you! Geez!"

I fixed a simple electrical issue and Heather said, "Hey!  We should keep you a little longer!" Ethan retorted, "No...it should be sooner than later."

Watching the CBS news morning show we're getting ready for school, Ethan commented about Syria and all the wars. He said, "Are we getting ready for World War III?" That is kinda sad actually. 

This morning Ethan was deadheading some of Heather's flowers. Ethan said, Oh my gosh! I'm turning into Mom. What is wrong with me!"

I just bought a ruler that is very convenient. It folds in half. When Ethan saw it, he exclaimed "Dad! Your ruler is SO cool! Not bad for a hippie."

Ethan made sure that he licked a whole bunch of cookies so we could eat them.

Last night, I asked my son Ethan if he is excited to start third grade tomorrow.  Exasperated, Ethan said, "Dad. This is school. Of course I'm not excited." I have been duly chastised.

Ethan knows that part of my vision therapy involves using an "Xbox Controller "  My son said, "Daddy! That is a waste!  If you didn't have a stroke and we played XBox together, you would be much better. Now, you are not good at all! Never mind. You were bad before the stroke." 

It is great to go back and remember!

Saturday, September 21, 2013

"Aphasia!" Damn "affakeica" which I "see" when I "read" Aphasia

Last June, a year ago, I went to the Idaho State University's aphasia group for a two-week intensive therapy session.

There were eight participants and we all had varying degrees of difficulty with communication and other things.

For two weeks we all heard our stroke stories. We shared tears and joy. It was heartwarming and heart wrenching at the same time.

So what is aphasia? Here is a very good definition:

Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is always due to injury to the brain-most commonly from a stroke, particularly in older individuals. But brain injuries resulting in aphasia may also arise from head trauma, from brain tumors, or from infections.

Aphasia can be so severe as to make communication with the patient almost impossible, or it can be very mild. It may affect mainly a single aspect of language use, such as the ability to retrieve the names of objects, or the ability to put words together into sentences, or the ability to read. More commonly, however, multiple aspects of communication are impaired, while some channels remain accessible for a limited exchange of information. It is the job of the professional to determine the amount of function available in each of the channels for the comprehension of language, and to assess the possibility that treatment might enhance the use of the channels that are available.

Fast forward to 14 months, last Friday I had a meeting at Idaho State University trying to set up an aphasia support group.

I saw two of my friends from the ISU Aphasia group that I haven't seen in 14 months. Also at the Friday meeting, saw women that I know because of the St. Al's stroke support group. One man I did not know before.

It was like old home week. It was great to see the ISU group.

Several people commented that I don't seem to have any communications issues at all. I just don't realize that my recovery is going so well.

Even though I can't read very well, at this point most people can't tell that anything is wrong with me. My apraxia is gone for the most part.  My right arm is not paralyzed anymore. To the outside world I seem very normal. 

The new gentleman that I met on Friday told me something like "you don't have any issues like every one of us!"

I realized that I am luckier than I thought. Certainly I have issues with reading and maybe comprehension sometimes. 

But, I still have Aphasia. When I type, I need a computer or an iPad. I cannot “write” any other way. I cannot address a card. I cannot address an address! I simply cannot hand-write anything.

I am grateful that ISU is forming this group. 

I do want to help in any way that I can. But, I know that I have limitations, but I continue with my recovery. But I am blessed in so many ways because I can communicate so well. Some cannot, and that is a lonely thought.

Great people!

Tuesday, September 3, 2013

The Myth of Sisyphus and strokes

When I was a child, my parents divorced, and my dad moved from Twin Falls, Idaho to Boise, Idaho.  I think that I have travelled back and forth at least 500 times….maybe 1,000 times.  A very small town called King Hill was about the midpoint.

King Hill was called “King Hill” I assume because there is a large plateau that resembles a crown. Maybe that was just my analysis. But, I always assumed that town was called King Hill because of the prominent  plateau.
The concept of a therapy plateau was always a consideration. Even when I was in the hospital, the doctors and therapists cautioned me about that. At that point, I wondered about they were talking about. To have a plateau, it seems that you needed to start before you could plateau.

I thought a lot about King Hill because, in my head, I was so concerned that I was going to plateau. That desert plateau represented my journey.  

One of my favorite books is “The Myth of Sisyphus.”  Wikipedia describes the book in this way: “In the essay, Camus introduces his philosophy of the absurd: man's futile search for meaning, unity, and clarity in the face of an unintelligible world devoid of God and eternal truths or values. Does the realization of the absurd require suicide? Camus answers: "No. It requires revolt." He then outlines several approaches to the absurd life. The final chapter compares the absurdity of man's life with the situation of Sisyphus, a figure of Greek mythology who was condemned to repeat forever the same meaningless task of pushing a boulder up a mountain, only to see it roll down again. The essay concludes, "The struggle itself [...] is enough to fill a man's heart. One must imagine Sisyphus happy."

It the 20 months since my strokes happened, my journey has be hard…incredibly hard. I have been discouraged. I have thought about giving up.  I have wondered what my life will be like in two years. Three?  Ten? 

But, when I thing about giving up, I just cannot do that. I have so much to live for. My wonderful son and my incredible wife who supports me in the dark moments when I wonder if this is all worth it. My brothers. How do I deserve such brothers. And my friends. Even when I wanted to give up, no one would allow me to wallow in self-pity.

So, in world, I could not give up even if I wanted to. Again, I have so much to live for, and I believe that my strokes happened for a reason. I am destined to help people with my story and give back in some way that I cannot fathom yet.

In the beginning with the strokes happened, my progress was incredible rapid. Through the months, my recovery has astounding even though some of the changes have been subtle , but the recovery is real and ongoing. I am still eager to “be done with it,” but my recovery will be ongoing throughout my life.

Sometimes, people ask me “are you plateaued?”

A very clinical definition  of plateau is: “Termination of motor rehabilitation is often recommended as patients with cerebrovascular accident (CVA) become more chronic and/or when they fail to respond positively to motor rehabilitation (commonly termed a ‘plateau).”

I am not plateaued! I have started a new round of therapy called vision therapy. I have full and very busy life personally and professionally even though I do not really have a job other than therapy and trying to make a difference.

So, like Sisyphus, “The struggle itself [...] is enough to fill a man's heart. One must imagine Sisyphus happy."

I am happy and grateful.

Thursday, August 29, 2013

A Brock String and XBox

I had another round of vision therapy today, and it is very interesting. Here is the description:

A Brock string (named after Frederick W. Brock) is an instrument used in vision therapy. It consists of a white string of approximately 10 feet in length with three small wooden beads of different colors.

The Brock string is commonly employed during treatment of convergence insufficiency and other anomalies of binocular vision. It is used to develop skills of convergence as well as to disrupt suppression of one of the eyes.
During therapy, the one end of the Brock string is held on the tip of the nose while the other is tied to a fixed point. The three beads are spaced out at various distances. The patient is asked to focus on one of the beads, while noting the visual input of each eye and sensation of convergence. Techniques may be made more difficult by bringing the beads closer to the nose and by employing lenses and prisms.

Here is a video that you can watch: 


Another exercise uses a XBox controller, and there are very specialized vision 
programs that the therapist use with me.  Our son is intrigued that Dad uses a 
computer and a XBox controller. Finally, my son is interested in my therapy!

Monday, August 26, 2013

Reading and strokes

I found an eye doctor who specialized with stroke and vision. I sought a doctor because I am a voracious reader, and because of my stroke, I have great difficulty reading. 

Reading was my hobby, and, for work, reading is key.

So, I have started a new round of therapy. I started last week, and I anticipate that it will take 6 months, two times a week.

Dr. Scott Lewis describes his practice in this way:  What is vision therapy? You can think of vision therapy as physical therapy for the eyes and the brain. The neurological aspect is very important because the eyes are direct physical extensions of the brain. We see with our brains and minds, not just our eyes. There are plenty of web pages which give accurate definitions of vision therapy 

Here is some related information about reading and stroke: 

People who have suffered a stroke can sometimes see the reading impaired. Calling this kind of alteration Acquired Dyslexia. This disorder can occur in conjunction with language disorders or in isolation. Different types of acquired reading disorders that are intimately related to the size of the lesion and the brain areas that it affects.

The left cerebral hemisphere (HI) is responsible, in most people’s language functions, but the right hemisphere (RH) also supports certain reading skills. This is why people with damage to the HI can recover some reading skills through the damaged hemisphere in collaboration with the HD.

The alteration of reading not only prevents the individual to enjoy recreational activities such as reading the newspaper, a book or watch a movie with subtitles, also interferes in other areas of their daily tasks like paying bills, follow written instructions or using the computer. Associated then a feeling of effort and frustration to any of these activities.

Some ideas to optimize the reading after a stroke: In some cases, silent reading is much easier than reading aloud, because it is affecting your ability to produce speech sounds. That’s why reading aloud words require an unnecessarily difficult process, because in any case the person can understand the contents of the text reading silently.

Reading aloud is awful for me. When I was elected to be on the Board of Trustees of the College of Western Idaho, I could not read aloud my oath of office. I completely understand everything, but reading aloud is so complicated for me. Everyone understands, and they always compensate for my “reading disability.” But, it really irritates me that people have to accommodate me.

I had four diagnostics tests with the doctor.  Like a doctor would – and should – he said “there are no guarantees. But it cannot hurt.”

Really? “But it cannot hurt.”


It CAN hurt if it does not work.

Wednesday, August 14, 2013

Our parents died last September....

One Year….

Yesterday, my brothers, Steve and Dirk, and I went to Twin Falls, Idaho. It was a quick trip.  We had to do some estate legal work, and after that, we went to the cemetery.  Our parents died in September, and we have not seen the headstone.

It was kinda surreal.  Because we live in Boise and our parents lived in Twin Falls, it seems that they are still here.  Seeing the headstone makes it real.

It seems like yesterday that my wife told me that my Mom was sick.  It was about early May.  Our step father was ill, and we knew that he would not get better, but this sudden news that both of our parents were going to die was heart wrenching.

Last summer was odd. I was recovering after my stroke (still am…), and my brothers and I went to Twin Falls every week…sometimes two times a week.  There were so many fires last year, and the scenery seemed like a burnt orange Moonscape.

Watching a parent’s demise was awful. It seems like reality was in slow motion. Mom was so healthy until ovarian cancer took her. 

Our step dad – a wonderful man – seemed to want to give up because of Mom’s condition. They were so vibrant, and then, they were gone.

Seems like yesterday, but it also seems so long ago.