Tuesday, July 19, 2016

"Anomic Aphasia and me!"

Yesterday I had a doctors appointment. My wife is out of town and my son was still asleep when I left.

Therefore, I wrote a note for our son to explain. Same handwriting! No misspellings other than a dog's name.

The phrase "wrote a note" would seem to be second nature. 

However, when you have aphasia, simple every day tasks sometimes are an unbearable struggle.

For several years since my strokes, writing a simple note was incredibly difficult.

When I try to write notes, I have to concentrate on every single letter. I used to be a grammar and spelling whiz. Today, my spelling skills are at best mediocre.

That same doctors appointment, I had to fill out work. I had to write down our pharmacy which is "Fred Meyer on Franklin and Orchard."

I had problems remembering the spelling of "Meyer." I could not remember how to spell "orchard." 

Recently, noticed that filling out paperwork or writing notes are getting better if I "speak" what I need to write.

My wife has noticed that when I type my blog or write a note I "speak it" also.

Certainly, I am compensating. Subtly, I seem to be recovering to the point where simple written communication is getting a little better.

Recently, our Idaho Aphasia Support Group heard a presentation about different forms of Aphasia.   

It seems that I have a form of aphasia called "Anomic" with a little bit of "conduction aphasia" for good measure. 

According to Wikipedia, 

"Anomic aphasia is one of the milder forms of aphasia. The term is applied to persons who are left with a persistent inability to supply the words for the very things they want to talk about, particularly the significant nouns and verbs. Their speech is fluent and grammatically correct but it is full of vague words (such as ‘thing’) and circumlocutions (attempts to describe the word they are trying to find). The feeling is often that of having the word on the tip of one’s tongue, which results in their speech having lots of expressions of frustration. 

People with anomic aphasia understand speech well and they can repeat words and sentences.  In most cases they can read adequately. Difficulty finding words is as evident in writing as it is in speech."

That is the textbook definition. It describes me better than most definitions. However, I don't struggle with nouns and verbs. I struggle with prepositions or "connector words." It is rare for me to struggle for "words." I understand financials, but I cannot calculate or ask questions about math because of the conduction part of my aphasia. 

Just like every stroke is different, my aphasia is different.

My aphasia is better than most. I made only one typo: "Lucy" versus "Lusy!" Not bad.

Pretty grateful.

Thursday, July 14, 2016

Stroke and Bullshit

Yesterday, I met a new stroke survivor. She wept.

Her stroke was 2 months ago. She cannot speak well. She has aphasia. She has some paralysis.

I met her at a stroke support group. I have often said that “Stroke survivors are an exclusive club that no one ever wants to join.”  

Like it or not, she has joined our club.

Her emotions are incredibly raw. At our group, all of our survivors tried to say “it will get better.” And it will.

Nevertheless, we said it is OK to be pissed off and angry. “People” (in other words, non-stroke individuals) say things like “It’s God’s plan” or “This is your new reality.” The one that I detest the most is "my new normal."

Really? Most survivors – if they can talk at all – respond to be polite:  “Well, excuse me! That advice really helps! Thank you! I never thought about that.”

Inside our broken brains, we are saying “bullshit.”  You have NO idea what we go through every single day.

New survivors are always told “you are a survivor not a victim.” We cannot feel sorry for ourselves for too long.  Our victimhood will only last for a moment. 

Then, the recovery mode kicks us in the ass.

"People" say things like "Your stroke should not define life." Again, that sentiment is great until you live it. Again, "bullshit." 

Also yesterday, I found out that another stroke survivor is now divorced and living with his mother. He is 60 years old. His wife of 40 years could not handle “God’s plan.”

The new survivor implied she cannot deal with this situation. Through her tears, unable to communicate, she hinted “I would rather die.”

I get it. I felt it.

All of us get it.

We tried to comfort her and her husband. For example, she is recovering pretty well for her new 2 month truth. At two month after my strokes, I could not attend a stroke support group. All of us told them “it will get better.

Nevertheless, it is bitter pill to swallow. You can overdose and die, or just keep trying and trying.

Survivor or victim. Depends on the day.     

Wednesday, June 8, 2016

Pain Scale: Physical and Emotional

The results are in! I still have brain damage! However, the MRI and MRA procedures I had last Friday show that my brain images are just the same as a year ago. That is good news!

The bad news is I still have neck pain since the rear-end collision I experienced last January. Despite PT, X-Rays, and very rough brain scans I have pain.

In the hospital after my strokes, nurses posted a “pain scale” for me to describe my pain level. At that point, I needed the chart because I could not talk.

During my PT because of the rear-ender, one of my therapists asked about my pain. I said, “In the hospital after my massive stroke, the doctor had to insert a port into my heart. That pain was a 10. It was awful!”

The PT is helping. Nevertheless, I still get some sharp shooting pains.

I sometimes wonder if the neck pain will just be there forever.

I have also considered that I am getting older. Is the neck pain the result of the collision or being 55 years old?

Years ago, my doctor saw me for some ache or pain. I was describing my pain. 

He smirked, and said, “Well, you are 40 now. Your body will get more aches and pains. It is just life and being older.”

I use the pain scale often because of the PT and otherwise. It is handy to describe all sorts of pain.

The loud banging noise during MRI’s and MRA’s are about a 7.

The sharp shooting pain because of the collision varied from 3 to 9 or 10.

The actual first stroke on the pain scale was pretty minor. However, the migraines the lead up to the strokes were about an 8.

Just doing this blog typing in my home office, my upper back is painful…about a 7.

That is just the actual pain in my shoulder and neck.

In my brain, the internal pain is getting more profound. The concentration I need to type gets worse as I go.

Preparing for and attending meetings is the same concept. My pain when I start doing any actively is about 2 or 3. I also have some pain. Again, I am getting older.  Throughout an activity – especially when I have to speak and/or think a lot – my threshold of pain decreases exponentially. By the end of a long meeting, my pain is about 8 or 9.

The next day, I am exhausted and have to sleep a long time. That next day, the pain can be a 9 or a 10.

I do think I have a high pain tolerance. I also believe I have a high pain tolerance for emotions, stamina, persistence, and patience.

However, I do have some limits. I am testing my limits because of this man rear-ended me. Certainly, his insurance is covering the basic stuff.  

Yet, wearing my old Economist major hat, my “opportunity cost” is getting exorbitant. What is “opportunity cost?”  

In other words, I am just tired of using my limited financial and brain capacity to deal with this situation. I have to drive, use gas, use MY time, miss other things, etc. 

HIS choices have left ME know choices. 

I am pissed off with a headache and back pain. Not a good combination. 

Saturday, June 4, 2016

Middle Aged and strokes

What is the age when you realize you are “middle aged?” According to “Dictionary.com,” the definition is  being of the age intermediate between youth and old age, roughly between 45 and 65.” I am 55 years old so I am in the middle of middle age.

The other night, my son and I had dinner at a national chair restaurant. This was my first experience using my “Over 55+ Menu.” I laughed when I ordered. My son laughed too much I thought!

“Dude,” I said, “You can walk home after you pay the bill yourself using my senior citizen's discount.”

I really never thought about my age until my strokes happened. Sure, I was 50 years old, but my mortality was a distant concept. My strokes instantly made me feel old and vulnerable.

When I got home from the hospital, though I could not “do math,” I tried to calculate milestones. What age will I be when my son graduates high school?  When will my 20 year life insurance policy end? When does my disability and social security income decrease? With my strokes, will I even see my son grow up? How much time is left for me?

I do not think about that often anymore because I am so busy living. That is a good thing.

Nevertheless, the clarity of my medical issues is a palpable when you do any test.  Last January, I was rear-ended. Despite physical therapy, I still have neck pain.

Yesterday, my doctor ordered another MRI and a MRA for me.

MRI lets doctors see very detailed images of the inside of your body. MRI passes through bone and takes pictures of soft tissue, such as tendons, blood vessels, and the brain.

“MRA” stands for magnetic resonance angiography. An MRA scan gives a view of specific blood vessels (arteries and veins).

I do not know the results yet, but it will be interesting to see if my brain has other different since my last MRI.  I hope everything is the same. That would be great news.

On January 6, 2012, I had an MRI because of severe headaches. The MRI showed nothing.  Three days later, I had my first stroke followed by the massive one January 13, 2012. If I had an MRA rather than an MRI, my life would have been so much different.

 I am glad I am getting both procedures just for the peace of mind – well, what is left of my mind!  

Sunday, May 29, 2016

Social media blather?

A hiatus from Facebook?

A couple of days ago, I went into a convenience store. A clerk was telling another clerk, "today I'm going to do my annual Facebook check to see if I've missed anything for a year. Usually I never miss anything. I'll check it next year."

The same day, one of my therapists said, "every once in a while I deactivate my Facebook account because I get tired of everything and clear my head.  I just want calmness in my life. I don't need to check in all the time."   

A lot of social media is just blather.

I'm thinking about heeding that sage advice. Perhaps, I need some serenity without social media blather.

I get so tired of political rants and raves. I'm so tired of Obama, Hillary, and Trump apologists.

So called "Progressives" and "Conservatives" are all the same now: Condescending arrogant talking heads. Al Sharpton, Rachel Maddow, Rush Limgaugh, Bill O'Reilly, etc. are all the same.

I'm so amused and dismayed at the same time.

I just tired of patronizing social media gadflies.

Therefore, I might pull the social media plug. I might let you know. Or not....

Friday, May 27, 2016

Remember to count your blessings! You too Mark Dunham!

2012 was a horrific year for me: Two strokes, the death of my parents, and a beloved uncle. 

When my mom was in the final stages of her life, Mom was pretty pragmatic about life and death. She died of ovarian cancer, and it was a ghastly fatal sentence.

Mom, in the final days before she died, said, “I have had a great life! I have had a wonderful life and 80 years of incredible health. Now, I will have about four months of shit.”

She continued, “Mark, your strokes were devastating, but, your life is not over. I believe that God has a new purpose for you. Because of ‘Mark Dunham,’ you can use your stroke story to educate people. Maybe your strokes are a blessing in disguise.”   

I think about her advice almost every day. During that awful year, there were many bright spots.

I'm so happy to have the opportunity to see my son grow up! His First Communion was extra special.  I enjoy my family and friends even more now.

I need to remember those blessings.

First of all, I survived. Given the severity of my strokes, I am very lucky!

·        Stroke kills almost 130,000 Americans each year—that’s 1 out of every 20 deaths.
·        On average, one American dies from stroke every 4 minutes.
·        Every year, more than 795,000 people in the United States have a stroke.

Second, because of hundreds of friends and family who donated money for my care, I had the financial resources to have the best rehab possible.

Third, though I have many invisible brain scars like aphasia, apraxia, agraphia, alexia, anomia, dysarthria, etc, I function pretty well. 

The fact that I am doing this blog is a testament that there is always hope. 

Fourth, I am trying hard to fulfill my mom’s predication about using my story to educate people about strokes. As a result, I have been busy! I don't just sit on the couch!  For example:

I am now on the Board of the Idaho American Heart and Stroke Association.

I help organize the “Treasure Valley Heart Walk.” I have been interviewed several times on TV as the voice of a stroke survivor.

My family’s stroke story was the subject of the St. Alphonsus “Festival of Trees” after my strokes. 

The video helped raise funds for St. Al’s ambulances and ER.

After my strokes, the Director of the Idaho Health and Welfare Department asked me to be on a committee to design legislation to set up a state wide “Time Sensitive Emergency and Trauma Registry.” Months of intense negotiations brought forth an important new law that will save lives.

One year after my strokes, Governor Butch Otter appointed me to the Board of the Idaho Housing and Finance Association plus the “Housing Company.” Both entities help Idaho citizens obtain affordable housing.

I help to co-found the "Idaho Aphasia, Apraxia, & Dysarthria Support Group." We meet weekly, and our Facebook page is open access so people throughout the nation can use our resources.


I have developed a “stroke presentation for kids” to discuss strokes, prevention, and possibilities.  I talked to about 10 classes so far. Next year, I will do much more.

As a founding Trustee of the College of Western Idaho, despite my disability, I am very committed to further the wonderful college. I also am on the CWI Foundation Board where we help raise funds for scholarships.

I hope to run again in November.  My work is not done yet.

Many people have contacted me to talk to new stroke survivors and their caregivers. It is heart wrenching and heartwarming at the same time. I try to use my story to give hope. “Never give up! EVER!”
All that I have been “given” since my strokes are opportunities to use my voice to tell people that there is always hope.

I have not done this alone. This is not my story. My stroke story is a collective story with so many players who supported me even when I wanted to give up.

By far, my best cheerleader is my wife. This is HER story of commitment, strength, patience, and love. I could not live without her!

It has been more than four years since my strokes.  2012 was surreal. Strokes, death, excruciating therapy,  depression, and tears.

Yet, as Mom and my wife said, “Use your stroke to do wonderful things.”

I try everyday. 

Thursday, May 26, 2016

Physical Therapy and George Carlin

I am doing physical therapy for whiplash. In January, a guy rear-ended me and the resulting “pain in my neck” is causing problems in terms of pain and insurance complications.

Next week, I will have an MRA and an MRI to see if something is wrong.  There is a concern because my strokes were caused by a torn carotid artery.  

My latest physical therapist is just “cool.” Born in Sandpoint, Idaho, he is moving to Hawaii to practice there.

When I asked what led him to move, he told me that it is almost a spiritual journey. He is studying himself and his place in the world.

We talked about spiritually, the essence of being, and faith.  

I told him that I am not a “church going guy,” though I have faith. It is perhaps not the Judeo-Christian faith that is the norm in “God fearing” tradition of my parents. I was baptized in three religions: Lutheran, Catholic, and Mormon. I find the traditional answers of those Judeo-Christian lacking.

I do have faith, but not in the normal way.

During the therapy sessions, we talked about the American want “stuff.”  There is a huge industry where people store their stuff. We added a 1,000 sq. feet several years ago, and now we have way too much stuff.

My therapist told me that he had a large house with lots of “stuff” including sports stuff, furniture, electronic, etc. His spiritual journey includes selling a lot of stuff!

I laughed and referenced George Carlin’s comedy routine about “stuff.” “That’s the meaning of life! Trying to find a place to keep your stuff.”

I told him I envy your future because he has time to discover “him.” He is getting rid of a whole lot of stuff not just possessions. Life in general. He seems so serene. So calm.

Life seems to be about stuff. Emotional, physical, and mental baggage.

Richard Bach’s book, “Illusions” is a favorite of mine. When I think about physical therapist, Bach perspective is true:  “You are led through your lifetime by the inner learning creature, the playful spiritual being that is your real self. Don't turn away from possible futures before you're certain you don't have anything to learn from them. You're always free to change your mind and choose a different future, or a different past.”

Sometimes I wonder if it is too late for me.