Friday, April 8, 2016

Greta Garbo and My Stroke

When you have a stroke, the physical nature of the injury is devastating depending on the severity of the stroke.  Stroke survivors deal with the physical issues differently. 

The mental aftereffects are often even more profound that the loss of brain tissue. The emotional toll of a stroke often has more shattering effects than the dead brain matter.

After my strokes, I was appointed to be on the Board of the Idaho Chapter of the American Heart and Stroke Association. I am the “voice” of the survivor. The organization helps in many ways. 

Concerning the emotional wreckage left after a stroke, this statement is a black and white summary about “me:”

“After a stroke, people often experience emotional and behavioral changes. This is because stroke affects the brain, and our brain controls our behavior and emotions. Injury from a stroke may make a person forgetful, careless, irritable or confused. Stroke survivors may also feel anxiety, anger or depression.”

Certainly that is a fair declaration about me.  But, the “black and white” perspective does not capture the disturbing nuances about the obsessive darkness I often feel when I realize how much I lost of me.

Many stroke survivors just “deal with it.” We have no choice. Some lucky ones resume their normal life. Many cannot resume a “normal life.”  Doctors, nurses, friends, and loved ones are caring. Nevertheless, everyone says in a gentle way “I could be worse and you need to adjust to your new normal.”

EVERY stroke survivors bristles about the term “my new normal.” NOTHING is normal.

Some stroke survivors also have the new gift of “aphasia” which I have. Aphasia is caused by damage to the language centers of the brain. Stroke is the most common cause of aphasia. According to the National Aphasia Association (2011), about 25% to 40% of stroke survivors experience aphasia. Aphasia is a condition that robs you of the ability to communicate. It can affect your ability to speak, write and understand language, both verbal and written.

I assume I have a mild form of aphasia. I can speak pretty well though reading, math, and handwriting are issues.  I have no choice about this and I compensate a lot. You just cope and hope.

The social isolation of aphasia is intense.

A commercial product called “Sentence Shaper” has the best overview about people who have aphasia:

“People with aphasia are typically adults, with a full range of complex ideas and emotions to express. The loneliness of aphasia -- which often keeps people from expressing themselves fully, and even from being recognized as thinking, feeling members of society -- can be profound. Language impairment makes it hard to participate in almost any social situation, whether it is making small talk, introducing oneself to potential new friends, or sharing ideas and feelings with longstanding friends and even close family members.”

I have noticed lately the background noises and the “crowds” simply are becoming unbearable whether a huge event, a loud restaurant, a family gathering, etc.  I am getting more irritated all of the time. Let me talk! Do not interrupt! Like Greta Garbo, “I simply want to be alone!”  Not always but now sometimes often.

I was ruminating recently about my life and aphasia. I used to love to interact with people. Making a speech in front of hundreds or even a thousand people was fun. I loved to go out and meet friends and family. I travelled all over the nation. I loved to drive. I relished exploring my world.

Now, from a talkative social guy, many times I just want to wrap myself into a cocoon in a dark bedroom and listen to the silence. Of course, I venture out when I need to be “Mark Dunham” again for meeting and social niceties. 

Nevertheless, sometimes, bliss for me is to escape in my mind to a place where I was before. 

Monday, April 4, 2016

Not just any stroke! “Fibromuscular Dysplasia.”

Many people ask what caused my strokes. I usually tell them that “I had a torn carotid artery.” Which is true.  However, the complete story is I have a condition called “Fibromuscular Dysplasia.”

Of course, there is a national website about it:

The Fibromuscular Dysplasia Society of America, Inc. was founded on March 11, 2003 and received tax exempt status on October 7, 2003. FMDSA is a Delaware nonprofit corporation which is classified by the IRS as exempt under IRC Section 501(c)(3) and as a "public charity" under IRC Section 509. Donations from individuals and corporations are tax deductible to the extent permitted by law.

The topic and the website are pretty dry and boring. Until you realize you have “it.”

From the website:

Fibromuscular Dysplasia, commonly called FMD, is a disease that causes one or more arteries in the body to have abnormal cell development in the artery wall. As a result, areas of narrowing (called stenosis), aneurysms, or tears (called dissections) may occur.  If  narrowing or a tear causes a decrease in blood flow through the artery, symptoms may result. Many people with FMD do not have any symptoms or signs on physical examination and are diagnosed by accident during a radiology scan for another problem.

And further:

The cause of FMD is not yet known, but several theories have been suggested. A number of case reports in the literature have identified the disease in multiple members of the same family including twins. As a result, it is felt that there may be a genetic cause.  However, a relative may have different artery involvement, different disease severity, or not develop FMD at all. In fact, most individuals with FMD  do not have a family member who also has the disease. Among some individuals with FMD, there is a family history of other vascular problems, such as blood vessel aneurysms.

And more:

FMD of Carotid Arteries: 
Torn carotid artery dissection
·        Bruit (noise) heard in neck with stethoscope                    
·        Swooshing sound in ear
·       Ringing of the ears
·       Vertigo (room spinning)
·       Dizziness
·       Headache
·       Transient ischemic attack
·       Stroke (I had a stroke)
·       Neck pain
·       Horner's syndrome

·        Dissection (I had a dissection)

A person with severe carotid FMD causing severe narrowing or a tear in the carotid or vertebral artery may have neurologic symptoms involving the facial nerves (drooping of the eye lid, unequal size of the pupils, for example), stroke, or transient ischemic attack. People with carotid FMD have a higher risk for aneurysms of the arteries in the brain (intracranial aneurysms). Bleeding in the brain (intracranial hemorrhage) may occur if an aneurysm ruptures, and it is important to identify and treat brain aneurysms early to prevent this.

Research shows that the condition affects women (90%) more than men (10%). Research also shows that the FMD usually manifests itself when people are about 50 years old. My 
strokes happened when I was 50.

More info from the website:

THERE IS NO CURE FOR FMD. Treatments are focused on managing symptoms and complications of FMD, including high blood pressure and headaches.  Antiplatelet medications, such as aspirin, may be prescribed along with medications to treat high blood pressure (anti-hypertensives).  Many patients with FMD suffer from headaches, and a number of medications are available to help control and prevent headaches. 

From the American Heart and Stroke Association:

·       Fortunately, less than 7 percent of patients suffer from a stroke on initial presentation. However, about one in five FMD patients has an arterial aneurysm, and one in five has experienced an arterial dissection. Because of this, imaging is now recommended from the head to the pelvis for every patient with FMD to exclude the presence of an aneurysm.
·        There is still no known cause or cure for FMD and no standardization for evaluating and treating patients with this disease.

So, is the prognosis for me?
Dunham Brain Scan

Prognosis for FMD The prognosis for patients who have fibromuscular dysplasia depends on the severity of the condition and complications that develop. Many patients can be successfully treated. In some cases, complications of fibromuscular dysplasia result in severe disability or death.

In other words, “it depends.”

I am in tune with my body and my brain.  Every pain and headache causes me to worry. A different headache in a new place makes me worry. I watch the signs but every stroke is different. It this headache new or am I just a worrywart?

It is a dilemma. Everyday. I will just take another pill…..

Thursday, March 17, 2016

Invisible Brain Scars

Yesterday, I attended the Idaho Aphasia, Apraxia, and Dysarthria Support Group at Saint Luke's in Meridian, Idaho.

After the meeting, to a fellow stroke survivors and I had lunch at the cafeteria. It was very crowded and we asked a older man to share his table with us.

We explained that we are stroke survivors. He asked about each one of us.

He looked at me and said, "You look completely fine."

His tone of voice said it all. "Really. Get on with your life. You're just fine."

The stroke survivors laughed. I said, "Yeah. I'm not paralyzed like I was. But I have many deficits like aphasia. I have invisible brains cars that will never heal."

And tell you have a brain attack, you simply don't understand the implications. 

Monday, February 22, 2016

"Old Lobbyists never die, they just fade away."

In an unanimous vote, the Board of the College of Western has officially supported the new trustee zone bill, HB 512 . This is a better bill than the one what was forced on us before. I supported the motion at our CWI board meeting supporting the new bill which is HB 512.

I do want to draw your attention to this language:

SECTION 1. That Chapter 21, Title 33, Idaho Code, be, and the same is hereby amended by the addition thereto of a NEW SECTION, to be known and designated as Section33-2104A,Idaho Code, and to read as follows: 33-2104A.

COMMUNITY COLLEGE TRUSTEE  ZONES. (1) Each existing community college district shall be divided into five (5) trustee zones. Each13 trustee position on the board shall be designated to a zone so that each14 trustee zone contains one (1) designated trustee position.

(7) Notwithstanding the time requirements set forth in this section, on or before July 1, 2016, the board of trustees of each community college district formed before the effective date of this acts shall obtain a state board of education-approved proposal to divide the district into five (5) trustee zones. Trustee terms due for the 2016 election shall be subject to the zoning and board position requirements set forth in this section.

This language basically means Guy Hurbutt and Mark Dunham are NOT eligible to run again. Our terms are up this year.  Emily Walton will have two years left on her term.  

When the new “zones” are complete, because Emily Walton, Guy Hurlbutt, and I live in the part of town in Boise, there is no way Guy and I could run because Emily’s term has two years to go in her term. And she's a great trustee!

Guy already announced several months ago that he would NOT run again.  I really thought I would run again for several reasons.

Nevertheless, HB 512 precludes me from running again. However, I really do support the legislation.

Certainly, there could be "gerrymandering," however, the CWI board would not consider gerrymandering. This needs to be fair and population based. This cannot be for the benefit of “Emily Walton” and “Mark Dunham.”  

It is not about two specific individuals. It should be about well-thought out legislation and policy.  

I would never be party to gerrymandering.  

I am hopeful that legislators who proposed this bill will now come together to support the students and the economy.  This divisive issue should be behind us for the sake of students, business, and taxpayers.

The new board should coalesce around the two-campus concept that has been planned for years. This is not a new concept despite what some media and legislators think.

It has been disheartening when news media and fellow elected officials state and/or believe that CWI will move operations out of Nampa to consolidate everything to the 10 acre parcel near the Boise River.

To suggest otherwise, is an outright lie.

That was never the Board’s plan or intent. Rather, a true community college serves students in accessible ways.  The Board has always committed to build-out the 100# acres in Nampa. The CWI Board has already programed two buildings in Nampa, and the Micron Technology Building in Nampa is State-of-Art regional training center which helps students and businesses.

That goal has NEVER changed.

For the 8,000 Ada County students, we have leased several buildings for years. This is NOT new. This is NOT a plan to abandon Canyon County and Nampa. Rather thousands of CWI students live in Ada County and attend classes in 5 leased buildings on Overland and Maple Grove.

The property called the Bob Rice parcel is designed to move the existing leased Ada County campus to the Bob Rice property which we own.

In both Ada and Canyon counties, taxpayers pay $2 million A YEAR for leased buildings.

It seems that people simply do not understand that there are two counties and CWI serves students in both counties. 

That is what community colleges do.

When HB 512 passes, it should be fair and equal.

For example, according to the US Census Bureau:

Ada County has a population of 426,236.

Canyon County has a population of 203,143.

By state law, every community college has to have 5 trustees.

Therefore, the two counties have a total population of 629,379. That means, each Trustee will "serve" about 125,876 people.  The five trustees would be elected “at large” but must live in their “zone.” I actually support the concept fully.

The new law will require zones. Here is the actual legislative language:

The boundaries of the several trustee zones in each existing community college district shall be drawn so that the five (5) zones are as nearly equal in population as practicable. If a community college district is situated within two (2) or more counties, and anyone (1)of the counties has sufficient population to warrant at least one (1)zone, then the boundaries of a  trustee zone shall be located wholly within the boundaries of such county.

It appears to me, Canyon County will “get” one trustee, Ada County will “get” 3 trustees, and one zone will be split between two counties.  To be fair, this should NOT be a King Solomon’s Choice.

Though it seems that I will not be on the Board of the College of Western Idaho anymore after December, I am so proud what Canyon and Ada Counties have done. The five original trustees were installed in July of 2007. We had a building but nothing else. No staff. No plans.

Today, College of Western Idaho (CWI) is a comprehensive community college providing higher education programs to residents of Western Idaho.  We offer a full range of academic and professional-technical courses leading to an Associate of Arts or Science degree, Associate of Applied Science degrees, continuing education, and certificates. CWI also offers Basic Skills Education to help prepare for a GED, Dual Credit for high school students, and fast-track career training for working professionals. Choose from classes offered at a variety of campuses throughout the Treasure Valley or online.

Though the new law precludes me from running again, I am blessed to have part of the history of College of Western Idaho.

I hope legislators will support CWI and a bond campaign which is needed to build buildings. However, I fear that some people who wanted this legislation will never support CWI and necessary bonds.  

And finally, the end of my CWI service also will mark the end of my Idaho legislative career. 

I started to lobby the Idaho legislature in 1984. I was the CEO of the Idaho Association of REALTOR’S for almost 20 years. Then I was the Government Relations Director of BSU along with the Interim Vice President of Institutional Advancement at Boise State.  I was the Vice President of the Idaho Association of Commerce and Industry for a year before I was named the Executive Director of the Associated General Contractors. Then, I retired because of two strokes. Nevertheless, I never missed a CWI Board meeting because of my strokes. And then, I was the De facto “lobbyist” for CWI as a Board member.

33 years as an Idaho lobbyist.

I have had a great lobbying career. I always tried to make a difference with respect for others.

Now, as my CWI term ends, “Old lobbyists never die, they just fade away.”

I will focus on other things other than the Idaho Legislature. It is time for Mark Dunham to leave the Idaho legislative stage....

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."