Tuesday, April 29, 2014

Kia Soul, Aphasia, and Loss

I met a man almost two years ago named Jack. We met at an aphasia therapy group organized by the Speech Pathology Department at Idaho State University. I was one of 8 participants for a 2 week program designed to help people who have Aphasia.

The National Aphasia Association defines our condition this way:

What is aphasia? 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.
That first day, everyone had to introduce themselves which was tough because people had difficulty expressing why we were there. People had varying degrees of communication issues.  
When Jack introduced himself and his wife, he concluded saying “I can drive!” People chuckled in a knowing way. When you have a stroke and/or a brain injury, people often cannot drive including me at that time.  
One day, I needed a ride, and Jack drove me home. He was very proud of his new car, a Kia Soul. Jack seemed so “normal” to me. I was envious. It seemed that his “issue” was a slight speech impediment.
Months later, my wife and I ran into Jack and his wife at a Boise State University football game. I was happy with my stroke recovery, and I asked them how they were doing.
In a nutshell, their life was so challenging.  They lost longtime friends who just became invisible. That is common when you have a stroke. More troubling was their children who lived out of town. The adult children insisted that Jack could not drive again and they wanted them to sell their house and go into a assisted living facility. The “kids” said that Jack “might” have Alzheimer’s even though there was no diagnosis of that.
I was appalled that their adult children from out of town insisted that they had to sell their car, they house, and most of their belongings to go into a 600 square foot “apartment.” I said “Why would you agree to do that?”
He shrugged his shoulders and grimaced a bit, and said something like this, “I just don’t want to fight anymore. It's just easier to let it go.”
Jack’s kids swooped in from out of town and hijacked his life. And they hijacked his soul. And they left.
When you have a stroke, it seems that your soul might be the only thing left. 

Wednesday, April 16, 2014

Steinbeck, Obsession & Strokes

Part of my “reading therapy” is "to read." It seems so simple. My 3rd grade son has to read every day for twenty minutes. I need to do the same as my son.

But, it is not simple for many reasons. It has been over 2 years since my strokes, and I do a lot of visual and reading therapy. “Reading” is fundamental. When you have a stroke, nothing is fundamental. The basic skill of reading was lost when I had my two strokes.
Twin Falls Public Library

I grew up in Twin Falls, Idaho. I loved the public library. When I was a kid, I would ride my bike to the library. I still remember the smell of the library and the smell of the books. It excited me even then.

I remember when I discovered Agatha
Christie and her mystery novels. I would check out one of her books, and I would go across from the library to the City Park by the Band Shell where I would read the book under a shade tree. It was heaven!

In high school, in the 11th grade, I took a class called “Novels.” The first day, the teacher said we will read “East of Eden” by John Steinbeck. She said, “We will discuss the book throughout the semester, but do not get too far ahead of yourself. Just enjoy the book.”

I did. However, I read the 640 page book over that first weekend.

I was obsessed with the book. During that semester, I devoured not just “East of Eden,” but also Steinbeck’s other works like “The Grapes of Wrath” and “Of Mice and Men.” By Christmas, I finished “Travels with Charley.” And the semester was over.

My teacher said, “You are an overachiever aren't you?” We both laughed. I got an “A.”

The term “obsession” completely describes my reading habits. The first book I read cover-to-cover without stopping was “Where are the Children?” by Mary Higgins Clark. I was in the fifth grade. I read a lot of her books in grade school and throughout high school.

My first reading obsession was the “Hardy Boy’s.” I still have all of those books. 

When I discovered an author I liked, I would obsess. Alexander Dumas, Charles Dickens, Stephen King, Ayn Rand, Peter Straub, Richard Bach, Ken Follett, Edward Rutherfurd, Lee Child, Peter Robinson, Jonathon Kellerman, Sir Arthur Conan Doyle, James Patterson, Mary Higgins Clark, Greg Iles, Michael Connelly, JK Rowling, Val McDermott, Ann Rice, John Saul, Theodore H White, Brad Meltzer, Preston and Child, Dean Koontz, Pearl Buck, Stieg Larsson, Doris Kearns Goodwin, David McCullough, Edward Radzinsky, Robert K. Massie, William Golding, Thomas Hardy, Colleen McCullough, William Shakespeare, Sinclair Lewis, John Irving, JD Salinger, Antonia Fraser, Charles Finch, Theodore Dreiser, Marianne Ziemer Bradley, David Balducci, Stephen E. Ambrose, etc. And of course, Agatha Christie.

I was also obsessed with history and topics like Russian history, Idaho history, political history, American history, mysteries, thrillers, all sorts of biographies, etc.

These authors and subjects were my favorites.  But, I read thousands of books I called “throwaways.” I read anytime, anywhere, etc. My brother Steve Dunham and I share the love of reading, and we would talk about books a lot.

When I had my strokes, I lost so many things. The loss of reading was probably the worst. Simply put, I could not read at all. In those early days in the hospital and later I had intense therapy 6 times a week, my doctors, therapists, my family and me, admittedly, assessed my deficits. When they discovered that I could follow TV shows, it was a huge victory.    

As the months and now years passed, I slowly recovered a semblance of my "new" normal self.  

However, reading was a dreadful dilemma. I would try to read, but I could not. Because of the stroke, I lost my right peripheral vision. Also, I could not “track” and my eyes would not “team.” When I would try to read, I would lose my place because I missed the right side margins.

The fact that I could remember plots of books was a great victory because many stroke survivors have short term memory loss.

But the problem for me was the basic process of reading. Margins are an issue. My reading speed is an issue. My reading comprehension is an issue.       

I used to read so fast. I would read several books at the same time. I would was a speed reader. I just loved knowledge and books. 

Now, I have to concentrate very hard. I need to focus on every word. I cannot have any distractions. I cannot ruminate because I used to think about other things when I was reading. When I write my blog, I speak the words aloud when I type. The disconnect in my brain makes it easier if I “hear” things.

“People” say things like, “Well, you can ‘read’ audiobooks.” When people say things like that to me, I hearken back to 40 years ago in the city park reading Agatha Christie. Audiobooks do not “do it for me.” Everday I think about the loss of reading. I know that my brother Steve is devastated for me because he know more the most that reading is life.

But now, like a good soldier and the good student I was, my assignment from my therapist is to “read” every day. I downloaded a Kindle book. It is a mystery authored by Greg Iles. I am using my “readers” and my “prism” glasses to offset when my eyes do not “team.” I consciously have to read slower and focus on every word.

But, I am doing it! I know I will never read like I used too which is hard to reconcile. It is a struggle and laborious. I do not enjoy it at all. 

I read a lot of information for the many volunteer roles I have like the College of Western Idaho, the American Heart/Stroke Association, and the Idaho Housing and Finance Association. So, I can do "it."   

The biggest difference for me, I used to read voraciously for pleasure. That is gone now. It is a grueling chore now.   

However, as promised, I am reading my Greg Iles novel now. I am reading more than I should! I have almost finished that book way ahead of schedule. 

It is hard in many ways. Old habits die hard.  It is 11th grade over again. Maybe I will read “East of Eden” again….

Wednesday, April 9, 2014

E-Mails, Baseball, and Strokes

I used to get a lot of emails! At the height of my career, I bet I got about 100 (or more!) emails every day during the week. Over a weekend, it was less but still a constant stream of emails.

Several years ago, when our son was starting to ride his bike, he asked me to “watch me Daddy!”

I watched but I was actually responding to emails. Our son said, “Daddy! I want you to watch ME! Not your phone!”

That was a great lesson for me. However, admittedly I still checked emails though I was more sneaky about it.

When my career began, there was no email. It was a simpler time. My secretary would hand me a stack of messages, and I would respond. I had a policy that I would respond as soon as possible though never more than one day later. I had the same policy for my staff. “Call” – NOT email because there was no email – no later than 24 hours.

Technology changed everything. The demands of time made everyone want instant answers. People would email me and then call me minutes later asking for a response. It was crazy!

But, it was the demands of my job. Right before my strokes, I posted a blog entry about my son. At that point, he was 6. He said that “I wish that Daddy was a mechanic so he would not travel too much.” In his mind, “Daddy’s work” took too much time: emails, travel, meetings, etc.

I knew that it was affecting my son’s life, but I had no choice I thought. When my dad was dying, he told me that “If you ever have a family and a child, do not make the same mistakes I did saying that working was providing for my family. 'Providing' for my family was more than money: It was being there.”

I never forgot my Dad’s admonishments. I had to work for my family. But, I did not know what to do.

Now, I do not really have a job because of my strokes. I cannot work now. That is a huge reality check!

I spend a lot of my time with my family now. I know my relationship with my son is better now since I had my strokes.

I still get email because of my responsibilities with the College of Western Idaho and the Idaho Housing and Finance Association. I also get Facebook emails. However, I get maybe 10 emails a day. That is much better than 100 emails a day that need action.

So, last night when our son played a baseball game, I enjoyed my family. I did not even think about my phone and emails.

Who knew that my strokes were a blessing in disguise? Of course, I miss some facets of my old life (reading, math, driving, and being busy a lot). But, I cherish the “new me” simply because I have connected with my son.

Thank you, Dad, for that lesson. However, it is a drastic lesson!! 

Tuesday, April 1, 2014

Keppra, Dilantin and Jack Nicholson

Jack Nicholson starred in a movie called “As Good as It Gets.”   It is hard to realize that you are getting older. When is the prime of your life? When health starts to fail, does it ever get any better?

When my strokes happened two years ago, I assumed I would get better.  Though the severity of my strokes did not give me a lot of hope, I struggled to recover. My family was the incentive for me to persevere.

The other day, I saw a friend of mine who said, “You look fantastic!” That is great! But, in my head, I am not fantastic. It is very tough to deal with what I have lost. I have made a great recovery, but I know that I will never be the same again. I have to deal with that reality, and, for the most part, I have accepted my fate.

However, the old adage I am waiting for the other shoe to drop seems appropriate for me. When I get out of bed, I wonder if something will happen to me. The seizure two months ago set me back physically but also emotionally. I often wonder what will happen to me next.

After the seizure two months ago, I was prescribed Keppra, an anticonvulsant used in combination with other medications to treat seizure disorders. I hated the side effects. So, my neurologist suggested Dilantin as a substitute. The problem with Dilantin is it can affect liver functions. I have to take blood tests a lot as a result.

Several days ago, my neurologist was concerned about my latest liver tests. This morning, my neurologist put me back on Keppra out of fear that I am damaging my liver. I will wean off Dilantin.

I have to do blood draws every week for the duration. My arms are like an addict with tracks of needles because of blood draws!

My life it seems is “As Good as It Gets.” So far.