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.”

Monday, February 9, 2015

Darth Vader, Strokes, and Sleep Apnea

When I was a kid, my parents recorded me snoring. I was embarrassed. I was about 10. Throughout my life, I routinely made sure I would not snore. Never sharing rooms, staying awake, etc. My dad snored as well.  

Years ago, my doctor asked about my sleep. I thought I slept well usually. However, I realized I was often tired. My wife (bless her) is a sound sleeper but she made sure she went to sleep before me!

Dunham Sleep Study 2009
In 2009, I had a sleep study. The results were startling and somewhat concerning. The sleep doctor noted that I rarely completed a deep sleep. He said it was one of the worst cases of sleep apnea he had encountered.

From the Mayo Clinic: “Sleep apnea is a potentially serious sleep disorder in which breathing repeatedly stops and starts. You may have sleep apnea if you snore loudly and you feel tired even after a full night's sleep.”
I have “Obstructive sleep apnea,” the more common form that occurs when throat muscles relax.
On the advice of my doctor and the sleep “guy,” I was fitted for a CPAP Machine. “Continuous positive airway pressure” (CPAP) therapy is a common treatment for obstructive sleep apnea. It includes a small machine that supplies a constant and steady air pressure, a hose, and a mask or nose piece. Common problems with CPAP include a leaky mask, trouble falling asleep, and a dry mouth or nose."

THAT is an understatement.

I wore it in the beginning often, but I stopped using it routinely several years ago. I rationalized that my sleep apnea wasn’t too bad, I hated the CPAP Machine, and my wife and son slept despite my snoring.    

I knew I snored a lot. I did not realize that sleep apnea could cause many health issues. The concept of stroke and sleep apnea never entered my brain.

Dunham Sleep Study 2015
Who knew that a stroke – or two – WOULD enter my brain with the resulting 20% loss of brain tissue, aphasia, apraxia, and the assorted “excrement” I have to deal with forever.  My life has changed because of strokes and perhaps sleep apnea.

Despite what I knew, I still did not wear my CPAP Machine. They are incredibly uncomfortable. 

I had two strokes and a seizure. Great. 

My neurologist told me that I should do another sleep study. I did the sleep study after that.

Since that sleep study, I have researched a lot about stroke and sleep apnea.

A new study from the American Academy of Sleep Medicine shows “that moderate to severe obstructive sleep apnea is independently associated with an increased risk of stroke, cancer and death.

Results of the 20-year follow-up study show that people with moderate to severe obstructive sleep apnea were four times more likely to die (hazard ratio = 4.2), nearly four times more likely to have a stroke (HR = 3.7), three times more likely to die from cancer (HR = 3.4), and 2.5 times more likely to develop cancer. Results were adjusted for potential confounding factors such as body mass index, smoking status, total cholesterol and blood pressure.

“Sleep apnea is a common disease that has a powerful impact on public health because it greatly increases the risk of strokes, cancers and mortality from any cause,” said lead author Nathaniel S. Marshall, PhD, senior lecturer in clinical trials at the University of Sydney in Australia.”

I get it.

But, I hate it. I am so frustrated anyway because I will live with the effects of my strokes forever. Forever. My life is different.  I thought my life "was over.” It is not, but I miss “me.” 

Nonetheless, I am waiting for an appointment to be fitted with a new damnable CPAP machine.

I hate the machine, but, if I want to see my son grow up, I need to use a CPAP Machine. It's like a Darth Vader Mask....

CRAP or CPAP. Same difference. 

Sunday, February 1, 2015

"What would Lincoln do?" "Add the Words" Idaho

There have been a lot of stories about the Idaho Legislature’s stance about LGBT  (lesbian, gay, bisexual, and transgender). For nine years, the LGBD community  has sought equal protection using the Idaho Civil Rights Act.

For years, the LGBT community, friends, loved ones, etc. have used this tag line: "Add the Words" in reference adding four words, 'sexual orientation' and 'gender identity,' to Idaho’s Human Rights Act

This year, the Idaho House State Affairs Committee finally granted the hearing. The three days of testimony was heart wrenching. The committee did not support the legislation but this was a step  in the right direction.

It is sad that in general, Republican have the perception of NOT supporting the LGBT community. I have always voted Republican.  But it seems I am “out of touch” because I am an economic conservative and a social liberal. Most of my Republican friends would add the words. Republicans are not bigots.

When I studied economics, I loved this phrase:  Laissez-faire is French term and literally means "let [them] do," but it broadly implies "let it be," "let them do as they will," or "leave it alone."   

For me, from the board room to the bedroom, "let it be."

I am hopeful that the testimony helped legislators to understand. Legislators want to do the right things. This IS right.  

My fellow Republican brethren, ask this question:  "What would Lincoln do?"

I believe Abraham Lincoln would have added the words.   

I cannot stand discrimination whether it is racial or LGBT.

From when I was I child, I “knew” that some of my friends were “different.” I did not know term “LGBT,” and I did not care. They were friends of mine regardless. They still are.

People have been asking why I care so much. I will tell you why.

When I was eight in 1970, my parents got divorced in Twin Falls, Idaho. Our mother rented a small house. The Fair Housing Act of 1968 was in its infancy and enforcement was almost nonexistent.

Ultimately the landlord (A Realtor) booted out our mom and her four boys. He did not approve of a divorcee raising four boys as a single mother.

Years later, when I was the CEO of the Idaho Association of Realtor's, I made speeches for 19 years throughout Idaho about fair housing. 

I did a speech in Twin Falls (my hometown) about fair housing. After the speech, the Realtor who kicked out our family shook my hand.

I said, "Do you remember me?"

He said, "I do not think so. Should I?"

I responded saying, "When I was 8 years old, you did not approve of my mother because she was divorced. You kicked her out with four boys. Now, because of the Federal Fair Housing Law, I make speeches about housing discrimination using you as an example. My goal is to make sure that you will never hurt another person like my mother and me. You should still be ashamed."

He was very embarrassed. 

Discrimination is very personal for me, in housing and otherwise.  I do not respect bigots.

Protecting LGBT friends is just the next step.

I am hopeful that Idaho will step up and add civil rights for everyone like LGBT.  We will get there.

I am reminded of this poem by Pastor Martin Niemöller:

First they came for the Socialists, and I did not speak out...

Then they came for the Trade Unionists, and I did not speak out...

Then they came for the Jews, and I did not speak out...

Then they came for me—and there was no one left to speak for me.

For Idahoans who do not support equal rights for all, I think of the poem. Someday, it might be them suffering discrimination. 

Friday, January 9, 2015

Three years ago today....

It seems like yesterday that my first stroke happened. It has been three years ago today.

I mark the days since my strokes differently now. It used to be days. Then months. Now years.

I could use my time like this Pink Floyd sang, "Ticking away the moments that make up a dull day. Fritter and waste the hours in an off-hand way."

Is that what I have been doing? I do not think so.

I cannot be bored. I need to be useful and have a purpose. I need to be busy!

However, my body and mind have limitations.

On Christmas Eve, I had a "incident." Neurologists call those incident a "brain attack." Nice euphemism until it is YOUR brain. 

Before Christmas, I had some headaches and it was compounded with being dizzy, minor chest pains, and a sore left wrist. Normally, I would not think about this. However, given my history, I told my wife. Then we called my neurologist.

Back to the St. Al's ER! Great.....

After several hours, the tests were in. I am fine.

Since that time, my neurologist suggested I cut down on my activities. "Schedule your board meetings in the morning and be done about Noon."
That is not realistic for many reasons. 

I am just one person. I cannot expected the other people to make concessions for me. 

And second, I will not give in to my strokes. I will continue to beat the expectations for stroke and seizures survivors. 

I will live my life like another Pink Floyd song: "The Great Gig in the Sky:"

"And I am not frightened of dying, any time will do, I don't mind. Why should I be frightened of dying? There's no reason for it, you've gotta go sometime." 

Thursday, January 1, 2015

Helen Keller and New Year's Resolutions

2015. A new year. 

It is hard to believe. I am 53 years old. It has almost been three years since my two strokes. I have been doing therapy ever since.

I never thought my life would be like this. But, it is what it is.

When I feel sorry for myself, I often think of Helen Keller. She overcame so much adversity. She said, “Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.”

Great advice. For my New Year’s resolutions, I try to live up to her example.

Here are my resolutions:

·       Make a difference in the world.

·       Be happy.

·       Be grateful.

·       Do not think of thing that I cannot change.  

·       Live for today.

·       Everyday is a blessing and a gift.

·       Concentrate on my family.

Lofty goals, but I will try.

I will also to the obligatory goals of trying to be healthier and blogging every week. I will continue striving to overcome my strokes and the aftereffects.

Helen Keller also wrote, “Self-pity is our worst enemy and if we yield to it, we can never do anything wise in this world.”

Happy New Year!

Friday, December 12, 2014

Stroke survivors and rehab

I was on the news this week about strokes and rehab. Though I am a private guy, I was asked to share my strokes story because my goal is to help other stroke survivors and their love ones and give them hope. 

Here's the segment: