Monday, April 20, 2015

Strokes and Dads

The other day, I was talking with my 10 year old son about my childhood. He is getting more mature. The nuances of life make him ask questions about my life and our ancestors.

He asked about when I was 10 years old like him. “Where did you live? What did you do every day? Who were your friends? What were your interests?”

He does have some information, but now he genuinely wants to know.

During the drive, I drove him past my dad’s mobile home.

“Your dad lived there?” he said surprised.  

“Yup,” I replied. 

Mark and Stan Dunham! New Mobile Home in 1971
When I was 8 years old, my parents got divorced. We were in Twin Falls, Idaho, but my dad moved to Boise after that because he get a job promotion. Your Grandma remarried and we lived in Twin Falls. However, my dad bought a mobile home. At the point, that was all he could afford.”

My son asked, “Did you see your dad much.”

I said, “After the divorce, I actually had a much closer relationship this my dad. I did not really know him because he worked all of the time. After the divorce and when Dad moved to Boise, I spent weekends with him a lot. I would ride the bus from Twin Falls to Boise. During the summer, I would spend several weeks in Boise with Dad even the he was working.”

“Wow!” our son exclaimed. “When you were alone, what did you do? Were you scared?”

Twin Falls, ID Bus Depot 
I laughed and said, “Well, there was no cable TV so I could watch three channels on a black and white TV. Or I read. A lot! During bus rides and when Dad was working, I read the ‘Hardy Boys.’ I also drew a lot. I would draw alien worlds or cityscapes. I could not go outside because of safety.”

Our son asked about “What did you eat? Could you use the microwave?”

I laughed again!  “Hmmmm. No! When I was a kid, no one had microwaves. The stone age!”   

Incredulous, he asked, “What did you eat?”

I smiled. “I learned to cook when I pretty small. Not just soup. Full blown dinners. I would make dinner for Dad! I loved to cook. Even now. After the strokes, I was so upset anyway, but I dismayed that I believed I could never cook again.”

He asked, “Where you lonely?”

“Good question,” I said. “Maybe? But I did not think about it. This was my life. I grew up really fast, but I am grateful. I had a sense of independence because I had responsibilities young in life. I did not know any difference.”

Our son raised his eyebrows and said, “Mmmm. Wow.” And then he changed the subject.  

I love that my son and I talk about mature things. Because of my strokes, he has grown up too fast also like me. I am proud of him. Sometimes I sense that he is also lonely like I was. He is funny, smart, and gregarious. But, sometimes when I watch him, I see him looking off in the distance. Sometimes he seems distant. Wonder what he in thinking? What will be his future given his parents and my medical issues?

In an old blog post, I referenced a comment about me. When I was 24 four years old, I friend of mine said “You have an old soul.” I am concerned that the apple doesn't fall far from the tree.

When my dad was dying, in the hospital, Dad said, “I worked too much. I thought that providing for my family was just making a good living. I realized later, being a good dad was not just about the money. It was being present. If you ever have a son, Mark, please be involved in every way.”

I think of my dad every day. When my son and I have discussions like my dad living in a “trailer,” I am happy that my dad and I became close in that 60' x 12' trailer.

Yes, I grew up fast like my son:  “Like father, like son.” Yet, I am thankful that my dad and I had such a special relationship where we talked about everything in our shared lives. Hope my relationship with my son will grow like with my dad and me.  

I think my strokes were a blessing disguise. I am a stay at home dad now. My dad would be proud. 

Monday, April 13, 2015

Aphasia? You can't be just a little bit pregnant!

After my strokes three years ago, I remember one of my many doctors and/or therapists saying something like “If you had to have a stroke, you are much better off than if it happened even a decade ago.”

There have been so many advances in stroke and aphasia rehab. Rather than stroke survivors not getting intense rehab, many stroke survivors did not have a lot of hope. Sit on the couch!

I do remember one doctors telling my family and me that my second stroke was so severe I probably could not do much. “Them are fightin’ words!”

In the 80% of my brain that is left, I continue with my recovery. The biggest problem is aphasia. I have blogged about it probably too much.

For example: When I wrote this word “probably”actually wrote “problely.” I knew it was not correct. In my head, I was trying to type “probably.” Nevertheless, I typed “problely.” The very useful Microsoft Word tool suggested potbelly” instead. 

So, I cheated and used “Siri” on my iPhone to get the exact word I wanted.

This is how I type my blog.  It is very time consuming but cathartic for me to express myself.  

Here is yet another definition from the “Aphasia Hope Foundation: Aphasia is an acquired language disorder that affects a person’s ability to communicate. Aphasia impairs the expression and understanding of language as well as reading and writing. Aphasia can occur suddenly, often the result of stroke, or it can occur over a period of time as a result of a brain tumor.”

I assumed that my aphasia would get better. However, I have read a series of “Tweets” that make me realize that there is no cure for aphasia. 

The “Aphasia Hope Foundation” wrote this: Can aphasia be cured? Thus far, no medicine, drugs, or surgery has been known to cure aphasia. Speech therapy is often provided to aphasic patients, but it does not guarantee a cure. Speech therapy is intended to help the patient utilize the remaining skills and learn complementary means of communication. Research and surgeries in the areas of brain repair and regeneration may provide for a ‘partial cure’ in the near future.”

Another group I follow on Twitter just posted this:  @AphasiaAnswers: There is no cure for aphasia, but with hard work and support, a person can return to a normal life.

I “Tweeted” this in my response: “I am tired of the term ‘my new normal.’ It's simply hard.”

Nevertheless, it seems to me that my aphasia is getting better. Perhaps, my aphasia is mild or maybe the INSENCE THEREAPY I have had for three years has MINIAMZE my CONSCUOUISE of my aphasia.

But, when I just typed this, this came out on my keyboard. What I really tried to type was this: “Perhaps, my aphasia is mild or maybe the INTENSE THERAPY I have had for three years has MINIMIZED my CONSCIOUSNESS of my aphasia.”

Like the old adage, “you can't be just a little bit pregnant.” I have aphasia. It seems that I have been dealing with it and somehow I have been compensating ever since.

The fact that I am doing this blog means I have the ability to “communicate” in various ways.

This short blog post took me over two hour to write/type. In the “old days” I would have written this in a couple of minutes.

I am most grateful that I can work around my aphasia. Or in my aphasia-speak, “gibberish.” Or from the Urban Dictionary:  "Bullshit: I blatant lie, a fragment untruth, an obvious fallacy." Or, my new normal.  

Thursday, April 9, 2015

The Big Bang Theory, Stroke, and Forgiveness

I love the show “The Big Bang Theory.” I never watched the show until I was it in the hospital after my strokes. Now it is my favorite show. I love the character of  Dr. Sheldon Cooper who has no filters. He said things that I wish I could say. But, I have filters. 

I went to a lunch a few days ago where a Congressman spoke. It was like old home week in some respects. I saw so many people from my different worlds: Political, medical, insurance, hospitals, lobbyists, housing, real estate, etc.

Many people said things like “you do not seem like you had any medical issues” or “you look great.”  That is nice to hear.

But, in actuality, because people know that I had a stroke (or two) and I have no visible disability, those same people think I am just fine and completely recovered. Invisible brain scars....

“Thank goodness you are fine now! So, what are you doing these days?”

I smile and say, “Well, I am on some boards that keep me busy.”

“Really? So, what else do you do?”

Because a polite and a lobbyist, I grin and say, “I am raising our son. With boards and our son, this is a full time job.”

The conversation lapsed after that.

In THEIR heads, I assume they are thinking “That is it? Really. Dunham seems just fine to me.”

In MY brain damaged head, I scream silently “What that hell! Do you have any idea what I have been through? The doctor said that my stroke was so severe I would NEVER do anything at all. Lie on the couch and try not to think about what you have lost. Just accept your destiny. That fact that I am even here at this lunch is a miracle and you wonder what I do every day? Do you have any idea what apraxia and aphasia are? Do you have any concept of mind blowing headaches and despair that I experience a lot? Really.”

Well that might be a little extreme! Nevertheless it is hard to explain what I feel when people say that you are completely recovered. 

Like Dr. Sheldon Cooper, I want to say: "That’s no reason to cry. One cries because one is sad. For example, I cry because others are stupid, and that makes me sad."

However, in the Bible, Luke 23:34, Jesus said, "Father, forgive them, for they do not know what they are doing."

So, I say, “ I am just fine. Thank you.”

Thursday, April 2, 2015

Great essay about brain injuries.

What You Will Learn From This: Living With Head and Brain Injury. – The Manifest-Station http://t.co/c8WRk46CvG

Monday, March 30, 2015

Paul Harvey and strokes

Recently, I read a short article about people in Great Britain returning to work after a stroke. The statistics I read said that about 65% of stroke survivors to return to work after their strokes.

When I was a kid, I listened to Paul Harvey. He would often say “Now you know the rest of the story!”

When I think of that statistic and my strokes, I am amused. "Reading" that article was a massive chore for me. 

After my strokes in January of 2012, the concept of work was terrifying. I was dealing with unspeakable emotions. I did not know my name though I did know my job. However, I could not speak about my job because I could not speak!

In the hospital, one of my therapists said, “Maybe, you will go back to work in November (2012) in a limited basis.”

Throughout those next few months, that was my goal. I assumed I would go back to work. Nevertheless, as the months dragged on and the fog in my brain started to lift slowly, I realized there was no way I could do the job. 

In my career, I was a high profile trade association CEO, teacher, speaker, higher education professional, and a lobbyist. That is a very demanding and challenging job. Here is a portion of my resume:

EXECUTIVE DIRECTOR
IDAHO ASSOCIATED GENERAL CONTRACTORS: November, 2007 to June, 2012

Responsible for the management of one of Idaho’s largest trade organizations.  Duties included personnel management, budgeting, strategic planning, public relations, fund raising, political representation at a local, state and federal level, coalition building, education, spokesperson training, and acting as the primary spokesperson for the commercial and transportation construction industry in Idaho.

VICE PRESIDENT
IDAHO ASSOCIATION OF COMMERCE AND INDUSTRY: October, 2006 to November, 2007.

Responsible for public policy development, strategy and advocacy for Idaho’s leading business trade association representing a diverse membership of businesses throughout the state of Idaho.

OWNER/CONSULTANT
ENVISION REAL ESTATE SCHOOL & CONSULTING, INC. April, 2006 to 2008

Founder and co-owner of a consulting firm and school specializing in real estate education, counseling real estate brokers and agents in business practices as well as providing counseling services in association management practices.

DIRECTOR OF GOVERNMENT RELATIONS
BOISE STATE UNIVERSITY: January, 2004 to April, 2006

Responsible for the development and coordination of university public policy activities and relationships with governmental entities including federal, state, and local governments as well as the business community, peer institutions, the education community, and within Boise State, Idaho’s largest university, including participation on the President’s Administrative Council, the Facilities Planning Council, and other key planning groups.
                                   
INTERIM VICE PRESIDENT OF UNIVERSITY ADVANCEMENT
BOISE STATE UNIVERSITY: July, 2004 to April, 2005

One of five vice presidents working with the university president, the vice president promotes Boise State through a variety of fundraising, public relations and marketing efforts. University Advancement includes the Alumni Association, Boise State Foundation, Bronco Athletic Association, and University Relations.

CHIEF EXECUTIVE OFFICER
IDAHO ASSOCIATION OF REALTORSรข: December, 1985 to December, 2003

Responsible for the management of one of Idaho’s largest trade organizations.  Duties included personnel management, budgeting, strategic planning, public relations, fund raising, political representation at a state and federal level, coalition building, education, spokesperson training, and acting as the primary spokesperson for the real estate industry in Idaho.

In addition, I was -- am -- a professional volunteer and an elected official.

I was engaged everywhere.

That stopped when the strokes happened.   

My employment ended in June of 2012. I resigned because I realized I could not do the job anymore. The prospect of returning to work in November of 2012 was a pipe dream; however, throughout the winter and spring, I relentlessly did all sorts of therapy with the goal of “returning to work.”

It is not fair for me to say it was a “pipe dream.” The goal of returning to work was not just a goal. It was my incentive to prove doctors and therapists wrong. “I will show you dammit!”

There are degrees of strokes: Minor, major, debilitating, paralysis, etc.   I suffer from exhaustion a lot and assorted health issues because of the strokes and seizures.

What sets me apart is Aphasia, Apraxia, and Dysarthria compounded with medications I need to take for seizures.

For example, I can “read” financial statements. However, I have difficulty expressing numbers. So, I can “read” the number “$2,245,137.15” but, I cannot say it.


I can “read” documents, letters, books, etc. However, it takes a lot of time and I get headaches. I have vision problems. 

Up to two thirds of people experience some changes to their vision after a stroke. I have vision problems in several ways including diminished right peripheral vision, reading, driving, etc.

When “people” say that I am recovered, I smile. I “look fine on the outside.” I am not.

How can I work when 20% of my brain is dead.

So, when I read statistics  “about 65% of stroke survivors return to work after their strokes” that does NOT tell the whole story. 

Wednesday, March 18, 2015

What is wrong with us! A lot: Aphasia, Apraxia, and Dysarthria

This morning, from 10:30 to Noon, at St. Lukes in Meridian Idaho, I participated in the “Aphasia, Apraxia, and Dysarthria Support Group” started a year ago through Idaho State University. We meet weekly. 

So, what is wrong with us?

Aphasia is the name given to a collection of language disorders caused by damage to the brain. A requirement for a diagnosis of aphasia is that, prior to the illness or injury, the person's language skills were normal. The difficulties of people with aphasia can range from occasional trouble finding words to losing the ability to speak, read, or write, but does not affect intelligence. This also affects visual language such as sign language. The term "aphasia" implies a problem with one or more functions that are essential and specific to language function. It is not usually used when the language problem is a result of a more peripheral motor or sensory difficulty, such as paralysis affecting the speech muscles or a general hearing impairment

Apraxia is a motor disorder caused by damage to the brain, in which someone has difficulty with the motor planning to perform tasks or movements when asked, provided that the request or command is understood and he/she is willing to perform the task. Apraxia is an acquired disorder of motor planning, but is not caused by incoordination, sensory loss, or failure to comprehend simple commands (which can be tested by asking the person to recognize the correct movement from a series). It is caused by damage to specific areas of the cerebrum. Apraxia should not be confused with ataxia, a lack of coordination of movements; aphasia, an inability to produce and/or comprehend language; abulia, the lack of desire to carry out an action; or allochiria, in which patients perceive stimuli to one side of the body as occurring on the other. Developmental coordination disorder (DCD) is the developmental disorder of motor planning.

Dysarthria is a motor speech disorder resulting from neurological injury of the motor component of the motor-speech system and is characterized by poor articulation of phonemes (cf. aphasia: a disorder of the content of language).In other words, it is a condition in which problems effectively occur with the muscles that help produce speech, often making it very difficult to pronounce words. It is unrelated to any problem with understanding cognitive language.Any of the speech subsystems (respiration, phonation, resonance, prosody, and articulation) can be affected, leading to impairments in intelligibility, audibility, naturalness, and efficiency of vocal communication.

So, every stroke story is a little different. We all have varying degrees of “issues.” Reading, writing, speaking, etc. are problems.

After my strokes, I attended a summer Aphasia Workshop in June of 2012. It was a two week program, and it helped me a lot. I became friends with several other stroke survivors.

ISU is not involved in the “Aphasia, Apraxia, and Dysarthria Support Group” anymore.  Our group sets our own agendas, arranges speakers and video presentations, etc. Usually, we have about 5 or 6 people attend. We are our basic ground rules:

Everybody who is a stroke survivor and is experiencing aphasia, apraxia, and/or dysarthria is welcome. 

Caretakers are welcome to introduce your stroke survivor, if needed.

However, our survivors want to interact together alone. Though we appreciate and need our caregivers, WE want to be with each other not caregivers!

Our goal for the group:
1.      Survivor—want to be vital, not victim
2.      Acceptance—who we are (AAD) through stroke
3.      Hope—we can get better, not just limited to AAD
4.      Respect—honor ourselves and others
5.      Integrity—confidentiality, dealing with others
6.      Service—helping others
7.      Courage—facing truth about ourselves and our potential

I am so grateful for the friendships I have developed because of my strokes. It is camaraderie that we did not choose but we share things that no one will ever understand. 

Tuesday, February 24, 2015

Albert Einstein and "Give me therapy!"

Tomorrow will be a red letter day for me.
Tomorrow, I will complete the last day of my therapy sessions. It will be 3 years and 46 days since my first stroke.

It seems like a lifetime ago, but it also seems like yesterday.

Since the strokes (and assorted other things like seizures, ER visits, and worry) I have been doing all sorts of therapy including speech, physical, occupational, reading, vision, acupuncture, massage, and hypnosis therapy.

I cannot fathom the hours of appointments I have had. I cannot calculate the hours of “homework” I have done. I cannot imagine the countless hours striving to be back to “normal.”  And, it comes down to this: I am blessed in countless ways, but I will never be back to normal. However, it has taken 3 years and 46 days for me to count my blessings and realize I have a pretty good life.

Certainly, I miss “Mark Dunham.” 

I miss a lot of things from my old life. I miss reading. I miss helping my son with his homework. I miss math! I miss not having headaches when I concentrate. I miss making a difference at the legislature. I miss not being scared all of the time about having another stroke. I miss driving on the freeway. I miss not being scared when I drive anyway. I miss being in complete control of my life and my fate. I miss not worrying about money. I miss not worrying about our son’s future. I miss not needing a nap. I miss doing my blog right now without a headache!

Simple needs!

3 years and 46 days….

Yet, I am busier than I ever thought. Between  board meetings like the College of Western Idaho, the Idaho Housing and Finance Association, the Idaho Chapter of the American Heart and Stroke Association, and other assorted duties and chores, I am astounded that my schedule is so demanding.

My neurologist keeps cautioning to slow down. “Resign from some boards. Take it easy.” However, I cannot. I like to be busy and contribute. I cannot do “nothing.”     

Nevertheless, I have really been trying to take her advice to heart. I cancel unnecessary lunches and meetings. When I have options, I try to participate in stroke support groups rather than board or legislative commitments.

When I miss support groups, I can tell. I need those people. I need to be refreshed. I need other stroke survivors. Perhaps it is like AA. My 12 step program. I almost physically need my stroke survivor friends.

At support groups, we laugh and cry together. We have common solutions and concerns. When we cannot express something because of aphasia, we understand. We laugh that often people cannot imagine that we cannot write or sign a signature or complete the alphabet.

So, though my official therapy sessions are concluding, my life of therapy is not. I have so much therapy to do at home. Everyday. For example, in one year, I need to write the alphabet backwards. I have to do eye and vision therapy forever. To reduce headaches, I need to do physical exercises but not elevate my heart rate too much!

My life is a balance. Do not do too much but do not waste away.As Albert Einstein “Learn from yesterday. Live for today. Hope for tomorrow.”