Sunday, January 10, 2016

Four years since my strokes!

Four years ago today, I suffered an ischemic stroke. In the hospital, three days later, I had a massive stroke. I lost a lot. As I have said many times, “I miss ME.”  Nevertheless, I count my blessings every single day. I could have died.

So, what I have learned during the four years of loss and recovery?

I am incredibly happy and blessed!

Other things:

“COMMUNICATION:” It was just a word before. But, when your degree is Communication and you make your living communicating, it is doubly devastating when you cannot talk, read, write, and understand even your own name. I just wanted to say my son’s name back to him. Today, though speaking is difficult, I am blessed to share my story making speeches about stroke and possibilities.   

“PATIENCE:” I was never patient. However, my body and my brain are recovering slowly. Hurry up already!

“MATH:” I cannot “do” math at all.  I can read financials but I cannot “calculate.” One of my therapists said, “Math is overrated.” And so it is.

“READING:” I miss reading. A lot! I can read again because years of “reading therapy,”. But, I do not enjoy it. Words used to flow in my mind to the pages. Now, I need to concentrate on every word. On the other hand, “listening” to a book is OK.

“PODCASTS:” have been a salvation for me. I listen to everything imaginable.    

“THERAPY:” I have “done” physical, occupational, speech, vision, acupuncture, hypnotherapy, and more. Years of therapy. Hundreds of hours! Thousands of hours on my own trying to be “back to normal.” Nonetheless, I have brain damage. But the brain is fascinating. The 80% of my brain that was not damaged is slowly developing neuro-pathways to accommodate my new brain possibilities.   

“MIASMA!” The term I use when I think about insurance, disability, social security, income, and the rest. Do you know that the average insurance policy covers 20 hours of rehabilitation? It does not matter what part of your body that is injured: 20 deplorable hours. “Injured knee? 20 hours of physical therapy. Here’s your bill!” A massive stroke where 20% of your brain is dead and you need years of therapy? “20 hours! And, do not let the hospital door hits you in your disabled ass when you leave because the insurance company wants you GONE!”     

“FRIENDS!” I have the greatest friends! I knew that before my strokes. However, people throughout the nation helped my family during those dark hours when I wept about everything including how to pay for therapy. My friends did everything. Grateful beyond words. Thank you all.

“NEW FRIENDSHIPS:” Through support groups, the “brain attack” network has given me an outlet to cry, laugh, learn, and just “be me.” So thankful for my follow stroke, aphasia, apraxia, etc. survivors. I am grateful to be on this voyage with you.

“FAMILY!” In one instant, my wife took care of everything. And she still does. She never let me give up hope. My brothers have been my rock throughout this unexpected journey. My extended family has supported me in so many ways including not overprotecting me. And our son. What can I say about Ethan, the little boy who on his 7th birthday helped me to the restroom when I was scared go alone the first night when I came home from the hospital? He had to grow up too soon, but he is such a great young man. Almost 11, he inspires me every day.  I love you Ethan!   

“DELIBERATE:” Every single day is hard. Simple things that I used to take for granted are challenging. Using a knife, using a pen, figuring a tip, applying toothpaste, writing a birthday card to my son, driving, etc. Typing this update will take me hours and leave me with headaches. Everything has to be very deliberate. And, I will make so many mistakes. However, now I let it go.  

“PRAYER!” When the second stroke happened, I could not reach the call button to cry out for the nurse. For two reasons: I was paralyzed so physically, I could not reach the button! Second, I lost my ability to speak in one instant. I could not yell! During that hour before the discovered me, I prayed for me. I prayed for my son. I prayed my wife. I prayed for my brothers. I prayed for Mom and my stepdad Karl. I actually prayed for death if I could not recover. But, my Dad, who had been dead almost 20 years, kept telling me “You will be fine. You cannot give up.” Since my strokes, so many people have told me that they prayed for me. I am eternally grateful for their prayers.    

“LOSS!” 2012 was the worst year. Ever. My two strokes in January. My stepdad’s failing health. My Mom, my rock, succumbing to ovarian cancer.  And then, my beloved parents dying 13 days apart in September. My wonderful Uncle Roy dying of a heart attack. I lost my career. I lost my identity. “Please! Just get the year over with!”

“HOPE!” Despite it all, I think my strokes were a blessing. I was so obsessed and driven to “succeed” I lost track of what “success” really means.

“Family. Friends. Helping others. Having meaning in your life.”  That is it.

And I do. 

Monday, November 23, 2015

"Woe is me" and Samuel Johnson

Over the weekend, I did a blog post about a hospital stay last week. I was not trying to an alarmist or to say "woe is me." Rather, I try to use by blog to describe my stroke journey.

My blog is published in different ways. Usually, it is just in the blog sphere. That is it. The audience is limited to readers who find it on my blog. Sometimes, I put my blog on Twitter where I have two accounts: My personal account but also the Idaho Aphasia twitter account. I have sometimes posted my blog on my Facebook account. And, also, the Idaho Aphasia Facebook page.


My last blog post was about the hospital stay. In that blog posts, I wrote "I have a condition called Fibromuscular dysplasia. FMD is a progressive twisting of the blood vessels throughout the body. It causes abnormal growth within the wall of an artery. It is rare: Fewer than 200,000 US cases per year.” It can't be cured, but treatment may help like taking blood thinners.


I ended by writing that "I want to see my son grow up.  I am petrified and angry. My body is not 'mine and has a life on its own. It seems I am a bystander in my head. Just waiting."


When I posted that last Friday, I got some instant negative feedback. A friend basically said "STOP! You need to stop living in the past and reliving your strokes. Embrace the fact that you are alive and awake."


I was surprised. I deleted my Facebook and Twitter posts about this incident. I did keep the Idaho Aphasia Facebook and Twitter posts. Those are limited to people who really understand what stroke survivors go through. 

I have really thought about my friend's admonitions. I am really living in the past? Is my blog selfish and self-absorbed?  


When one of the trendy Facebook "things" about "what to you post most on Facebook, "Stroke" was my 1# thing. Is my self worth just "stroke?" Has my identity become "Oh...another stroke post. Move on." 


Perhaps I do too much about my strokes. 


Of course, I know that dissection did NOT cause a stroke. However, I had a "MRI that showed last week that recently – May of 2014 to perhaps August of 2015 – I had a right side carotid dissection."


Samuel Johnson wrote "The prospect of being hanged focuses the mind wonderfully." 


In other words, I am scared. I am focused on this MRI. It will take some time for me to forget this latest scare.


So, for now, I am sorry for expressing my worry in a public way. 
When I quit stressing about the possibility of having another stroke, I will think about this advice.  

Friday, November 20, 2015

My Fibromuscular dysplasia is heart wrenching

 When you have a stroke – or two and seizures like me – a simple headache causes worry. In the back of your mind, your damaged brain thinks “it is happening again!”

Recently, I had some severe headaches. They were different from the headaches when I had my strokes and seizures. These were a pounding ache on the left side and the top of my head.

When they started on a Sunday night, I thought “they will go away.” They did not. I took several painkillers. My head kept aching.

Finally, on Wednesday, I went to the hospital where I had a MRA and a MRI. The good news, I have an intense sinus infection. I forgot that a headache could be something else other than a “brain attack.”

However, we discovered that had a brain incident. Or I did NOT have a brain incident.

To explain, here is what I know about my brain.

I have a condition called “Fibromuscular dysplasia.” “FMD” is a progressive twisting of the blood vessels throughout the body. It causes abnormal growth within the wall of an artery. It is rare: Fewer than 200,000 US cases per year.” It can't be cured, but treatment may help like taking blood thinners.

In my case, it seems that my left carotid artery maybe became elongated or kinked causing my ischemic stroke.

Studies I have read that “Patients with FMD in the carotid arteries typically present around 50 years of age.”  I was 50 years old when my strokes happened.

My strokes, almost 4 years ago, have been devastating.  20% of my brain is dead. I have aphasia and apraxia. I cannot read very well anymore. I cannot hand write. Math is “gone.” But, I can read financials. My right peripheral vision is diminished, but I can drive. I have no visible disabilities. Yet, I get exhausted when I concentrate. Often times, I get headaches when I go to meetings.

Dunham MRI and MRA 11-18-15
Nevertheless, I am grateful that my recovery is heralded to be a “miracle.” Many people forget that I had strokes. Sometimes, I forget it myself. My carotid dissections (my strokes) are healing.   A dissection does not mean that you always have a stroke.  In my case, that happened.

Until that sinus infection. The MRI showed not just my January of 2012 strokes but an unanticipated brain incident that was undetected.

How can that be? The MRI shows TWO carotid dissections. My left side carotid dissections that caused my shocking strokes almost four years ago.  That left me with all of my brain deficits. 

But now, the MRI shows that recently – May of 2014 to perhaps August of 2015 – I had a right side carotid dissection. But that dissection did NOT cause a stroke.

I would not even know about it at all other than the headaches.  Would it be better that I would never know about this brain incident?  For me, I always want to know.

Since the MRI two days ago, I have been scared and depressed. Certainly, my Plavix has saved my life. What the next time? What if next brain attack is so severe that Plavix will not stop a massive stroke?  Will there be another “next time?” How to prepare?

I want to see my son grow up.  I am petrified and angry. My body is not “mine” and has a life on its own. It seems I am a bystander in my head. Just waiting.

This situation is just heart wrenching. Or artery wrenching.

On the other hand,  the good news is I'm fine and did not have a stroke or a seizure. Blood thinners like Plavix are life savers. Literally for me.

During the MRI/MRA process, they piped in Pandora for me. I listened to Pink Floyd's "Brain Damage" from the "Darkside of the Moon."

Ironic.

Thursday, October 29, 2015

The Truth About Stroke – World Stroke Day is October 29

The Idaho Statesman published my Guest Opinion this morning. October 29, 2015 is "World Stroke Day." I published this to help raise awareness about strokes. 

The Truth About Stroke – World Stroke Day is October 29

About 800,000 people in the United States have a stroke every year and someone dies from one every four minutes.

On January 10, 2012, I had a stroke. And three days later, while in the hospital, I suffered a massive stroke. My right arm was partially paralyzed. I lost all communication: speaking and writing. I did not know my own name.

Before my strokes, I was a lot like you – a busy Dad, working hard to support my family and I thought I was in good health. I was an elected official as a board member at the College of Western Idaho and Executive Director of the Associated General Contractors, a large trade association. I was a prominent state lobbyist and educator. I was a master multi-tasker making presentations and speeches throughout the nation.  Even more importantly, I was a husband and the father of a six-year old boy.

The truth is stroke is the world’s second-leading cause of death and No. 5 in the United States. It’s also a leading cause of long-term disability – though largely preventable and treatable. Fewer than one in 10 people know what each F.A.S.T. letter means and one in three people can’t name any stroke signs, according to American Stroke Association studies.  
As part of World Stroke Day on Oct. 29, the American Heart Association/American Stroke Association is urging Idahoans to learn the warning signs of stroke. Personally, I can’t emphasize knowing the signs of stroke – it happened to me – it could happen to you or a loved one.
F.A. S.T. has four sudden signs of stroke. When you spot any of the four signs, call 9-1-1 for help right away. 
F.A.S.T. is:
Face Drooping – Does one side of the face droop or is it numb? Ask the person to smile. Is the person's smile uneven?

Arm Weakness – Is one arm weak or numb? Ask the person to raise both arms. Does one arm drift downward?

Speech Difficulty – Is speech slurred? Is the person unable to speak or hard to understand? Ask the person to repeat a simple sentence, like "The sky is blue." Is the sentence repeated correctly?

Time to call 9-1-1 – If someone shows any of these symptoms, even if the symptoms go away, call 9-1-1 and get the person to the hospital immediately. Check the time so you'll know when the first symptoms appeared.

After my strokes, I endured years of intense occupational, physical, speech and vision therapy. At the time, I thought life was over. It’s a daily struggle, but with the support of my family and friends I have beat many odds. I am so grateful for my second chance in life.

Today I am still on the Board of the College of Western Idaho and was appointed by Governor Butch Otter to serve on the Board of Commissioners Idaho Housing and Finance Association. I’ve also become a strong advocate for stroke prevention and awareness and proudly serve as a board member for the Idaho American Heart Association/American Stroke Association.

If you remember one point from my story, please remember this: A stroke is devastating and it can happen to anyone. Know the four F.A.S.T. signs of stroke – it could just save your life or a loved one’s.

To learn more information about the symptoms and warning signs of stroke, please visit www.heart.org.


Mark P. Dunham

Tuesday, September 8, 2015

Strokes, Aphasia and Football!

Three recent events made me realize that I have come so far since my strokes. On the other hand, I also know what I have lost. My recovery is bittersweet.

The three events were:
  • The Western Idaho Fair
  • The “Saving Strokes Golf Tournament” sponsored by the American Heart and Stroke Association
  • The opening game of the Boise State football season
I have gone to the fair and Boise State football games for decades. My friends and I have loved to attend those events.

Those three events tested my ability to participate for many reasons.  When you have strokes, you are very sensitive to your visual and sensory perceptions. Therefore, I need to keep distractions and noise down.

The fair and the football games were sensory overload.

At the fair, it was hot. People were everywhere. The sounds and the lights were intense. In addition, because of my strokes, I have vision loss. Mainly, my right peripheral vision is gone. I was careful; however, I was jostled and bumped. I was so hot that I was worried I might have a seizure. It took a few days to recover.  

I did attend a game after my strokes. I was honored to be one of the 2012 Boise State Distinguished Alumni. At halftime, I was on the field. It was an honor. However, part of the perks of that award was being in a suite rather than in the stands with bleachers. In the suite, crowd noise were muted. I did not notice noises. 

Going to the first game as a regular fan last Friday was physically and emotionally horrendous. 

Tailgating was a haze of lights, colors, loud crowd noises,  etc. That was just the tailgating!

BSU Game September 4, 2015
Climbing to the top of Albertson’s Stadium was even worse. The chant -- “Boise! State!” -- hurt my ears. The nonstop light’s from the scoreboard, the massive loud crowd noise, and my lack of depth perception because the loss of my right peripheral made me actually scared.   

I had to leave at halftime. It took me three days to recover.

Two days before the game, I participated in the American Heart and Stroke Association “Saving Strokes Golf Event.” Though I cannot golf again because I had a torn carotid artery which caused my strokes,  I helped plan this event. It was for stroke survivors and their caregivers.  The point of the event was to raise awareness that people who have strokes can be active again.

The organizers (which I realize would be “ME” because I am on the Board!) asked me to speak about my strokes.  I am actually tired of talked about my strokes. It’s been almost 4 years. Nevertheless, I do those presentations to try to give hope.

Just preparing for a simple presentation is tough. As I explained when I did my speech, when you made your living doing speeches and presentations and you lose ALL communication because of stroke,  it was especially hard to talk about “me.”
The aphasia makes it difficult to read so rehearsals are not really possible. The aphasia also make “word finding” challenging.

I did the presentation. I got flustered at the beginning which compounded my frustration. A hallmark of aphasia is “l know what to say, but I could not get the words out.”

Here is a video of the presentation:


There are some tips that I should have done before my appearance. Of course, I did not prepare enough obviously! 
  • Give you plenty of time to answer questions and allow time for you to understand instructions. After a stroke, it will take you longer to process what has been said.
  •  People who have had a stroke may have speech or language problems. Here are some tips for your family and care givers:
  • Use simple words and sentences, speak slowly. Ask questions in a way that can be answered with a yes or no. When possible, give clear choices. DO NOT give too many options.
  • Break down instructions into small and simple steps.
  • Repeat if needed. Use familiar names and places. Announce when you are going to change the subject.
  • Make eye contact before touching or speaking if possible.
  • Use props or visual prompts when possible. DO NOT give too many options. You may be able to use pointing or hand gestures or drawings. Making a book with pictures or words about common topics or people will help to communicate better.

After the event, I was talking with a nurse and I said, “It seemed like I was NOT a stroke survivor. Rather, I was just helping out like I did throughout my career.”

It seemed “normal” other than my halting speech.

Those three events – the fair, my speech, and the game – wiped me out more than I thought. For days, I got headaches and needed more rest.

I think I am human after all. "Abnormal!"

Tuesday, September 1, 2015

Math, strokes, and aphasia

One of my favorite professors when I attended Boise State University was Pat Shannon.

He was a business professor and taught “Statistics.” I took two semesters of his class. As the saying goes, “he wrote the book on 'Statistics.'” 

Literally he wrote a noted Statistics textbook. He used HIS textbook for his class.

Years later, I joked with him saying that “I did not think that it was fair to use your own textbook. How could I argue about bad examples when YOU wrote the book!”

He laughed, and said, “Well, at least you got ‘A’s’ because you were a math whiz.”

And I was.

Math was so easy for me. All math inducing calculus, algebra, trigonometry, statistics, geometry, etc. was so simple.

Several years after my conversation with Pat, I had two massive strokes. My son was in the 1st grade, and I could not even do his homework at all.

After my strokes, I had lunch with Pat, and I told him that “I should get a refund for my math classes now because I cannot ‘do math’ anymore.” 

He laughed, but said, “Really? What does that mean for you now?”

I explained that I certainly understand “math.” For example, I completely understand financials like the College of Western Idaho financials. I am on the Board of the Idaho Housing and Finance Association, and I read and review  very complex financials all of the time. 

understand everything. However, I cannot “express” or “say” when I try to ask a question about math and financials.

I cannot calculate at all. That's the biggest frustration. I feel just stupid.

To explain further, Patricia Montemurr, Detroit Free Press, wrote an article that illustrate that I have to deal with everyday.

ABC newscaster Bob Woodruff, a Michigan native and Cranbrook school graduate, also suffered a brain injury that brought on aphasia when he was nearly killed by a roadside bomb in Iraq in January 2006. Woodruff returned to the air in 13 months, but he says he still deals with the aftermath of aphasia.

Aphasia doesn't affect a person's intelligence. People with aphasia can form thoughts and words in their minds, but they cannot always get the words out.

"It can affect your ability to listen, to write, to read, to do gestures, to do math," says Mimi Block, clinical services manager of the University of Michigan program. "Anything that's language-based. And you don't realize how much is language-based until you lose it." 
It is still very difficult for me. So sad.

When tried to do our son’s 1st grade math, I could not do it. Now, he is in the 5th grade, and my aphasia is very frustrating for me. I cannot help with my son’s homework. That is a devastating blow for me.

I just feel so “useless” which is common for a stroke survivor.

Luckily, my wife is a math wizard, and she helps with our son’s homework. I listen in another room. Again, I “miss me.” 

There is a television show called "Are You Smarter Than A 5th Grader?" I am not.

Thursday, August 27, 2015

Strokes and vacations!

My “blog vacation” is over! In other words, my son is starting 5th grade and now I have time to pursue my blog!  Is that a good excuse? I do not know. I really needed to take a break and reflect about what has transpired in my life since my strokes.

And, I spent my summer enjoying my life, my recovery, and my family. I spent the summer with our son. I relish the everyday “things” that most people take for granted.  

My son has always kept me going throughout the dark times when I just wanted to die because of my strokes almost 4 years ago. He gave me hope and a reason to live. I wanted to see him grow up. I wanted to witness the first days of school and the last days of school.

When our son started school, he went to the BSU Children Center. He progressed to Monroe Elementary for kindergarten. Now, it is in the 5th  Grade at Sacred Heart Catholic School in Boise.

It seems so long ago. I lifetime ago really.

When he started, I could not really attend his events. I rarely dropped him off or picked him up from school.

I was “busy.”

Life has a way of changing our perspective. Illness, strokes, death, and changes are the hallmarks of our life since he started to go to school.

Now that he is in the 5th grade, I do count my blessings because I am “around” to see my son grow up into a wonderful kid.

I missed a lot of his school “stuff” because I was working and stressed.  

In January of his 1st Grade year, I had my strokes. My parents died 10 months later. I cannot imagine what he experienced.

I am 5 years old. Last year, we were robbed, and I am still scared. 

I am 6 years old now. And now, Daddy is in the hospital. What is a stroke? Daddy cannot talk and cannot use his right arm now. He does not even know my name or his own name. 

People whisper that Daddy will never be the same. Will he die? 

I hate the hospital…the smells and the sounds. I do not want to see Daddy now. 

Daddy comes home from the hospital on my 7th birthday. We go to Red Robin, and I have to help my Daddy to go to the bathroom because he is so scared.

I am 7 years old.  

I am so scared. 

And now, I might have to change my school.  I do not want to change. 

Mom is trying to hide a lot my dad so I won't be worried. Why so many playdates? 

At school, people whisper. 

I do not want to be noticed. 

Mom needs help. When she picks me up, other parents do not talk to us. Mom seems alone and sad. 

I do not understand about money. What is "tuition?"   

And now, my Grandma and Grandpa are sick and then they just died. 

What is death? 

Why is God doing this to me? 

I just want my friends. I just want my life back. I want to be normal. 

I want Daddy back.”

Fast forward and the 4 year anniversary of my strokes will be in January of 2016. In September, my parents will have been dead 3 years.

2012 was a devastating year for all. “Annus Horribilis.”

However, we are happy despite of all of “it.” When I get depressed, I just think of our son…our funny, goofy, smart, irreverent, and nice kid. I am grateful for him because he gave me a reason to live. Even now.