Monday, October 29, 2018

World stroke day

World Stroke Day is observed on October 29.

I didn’t really think about strokes until I had mine. My two strokes were caused by a torn carotid artery because of a genetic condition called fibromuscular dysplasia.

The bottom line is 20% of my brain is dead and I have aphasia. I was 50 years old and in good health.

This photo shows my brain scan. The white sections on my brain shows dead brain tissue.

Here are some sobering strokes statistics:

Stroke kills about 140,000 Americans each year--that’s 1 out of every 20 deaths.

Someone in the United States has a stroke every 40 seconds. 

Every 4 minutes, someone dies of stroke.

Every year, more than 795,000 people in the United States have a stroke. 

About 610,000 of these are first or new strokes.

About 185,00 strokes--nearly 1 of 4--are in people who have had a previous stroke.

About 87% of all strokes are ischemic strokes, in which blood flow to the brain is blocked.

Stroke costs the United States an estimated $34 billion each year.

This total includes the cost of health care services, medicines to treat stroke, and missed days of work.

Stroke is a leading cause of serious long-term disability. 

Stroke reduces mobility in more than half of stroke survivors age 65 and over.

Thursday, October 18, 2018

Stroke recovery and deodorant


Last weekend I was in Austin, Texas for a meeting. I’m on the Board of the Idaho Housing and Finance Association and this was a national meeting.

During the trip to Austin, I was thinking of all the travel I used to do professionally. I was the CEO of the Idaho Association of Realtors®️, the lobbyist and a vice president at Boise State University, and the director of the Associated General Contractors in Idaho. With those jobs I also traveled throughout the state and the Northwest.

That means from 1984 until January 10, 2012 I traveled extensively for work: Hundreds of flights, airports, conference rooms, and hotel rooms.

One morning in Austin, I laid out my travel bag with items such as a razor and a toothbrush.

I was struck about those ordinary items that are used to take for granted.

In the hospital right after my massive stroke, my therapists patiently made me name those items. For toiletry items, I had to figure out how to use them.

It was incredibly humbling and perplexing for me. I didn’t know how to shave. I have no concept of a toothbrush. Deodorant was a foreign thing.

I was getting ready for my morning meeting in Austin I took a picture of those items could I used to routinely use.

Even now, I have to be very deliberate using those items. I have my routine. Often I have to pause for a moment make sure that I did everything correctly.

I’m grateful that I have the ability to be useful again. And I never take anything for granted especially deodorant!

Friday, September 28, 2018

"Mark Dunham Show."


Yesterday, I chaired by weekly Aphasia Support Group. Always arrive early to make sure that room is set up. Before that, I scout topics about Aphasia, traumatic brain injury, strokes, etc.

Every week, try to identify YouTube videos or articles so I can led the group for an hour. Internet is my friend.Getting ready on Wednesday, I "checked in" on Facebook to convey that I was feeling positive to see my fellow stroke and aphasia survivors.

On my personal Facebook page I posted a picture of our meeting room plus a cartoon about brain fatigue.

Every week, ask everybody "how have you been doing this week?" We all know each other. We understand our stories. We understand the unseen challenges every day that nobody knows about.

When we were talking about brain fatigue, we all commented -- given that because of aphasia some of us cannot speak very well -- "it is real."

One person commented that every minute of every day needs to have a conscious effort to deal with our brains. From tying a shoe or maneuvering down the stairs to our meeting room takes very deliberate brain activity.

Without exception, we get tired and need time to rejuvenate our brains. I call it my "silent space."

We also watched a video about anger management after a stroke. Several people commented that they have "short fuses" now. 

Some of us (like me) do not really show a lot of emotion. For me sometimes it is sadness. Often I’m just too tired expand the brain energy because my batteries are running low.

One person said, "It must be exhausting to be that ‘Mark Dunham’ because of your responsibilities and being so visible."

I laughed but it’s true. I am tired putting on the "Mark Dunham Show." 


That show was exhausting at times. I ruminate and multi-task in my damaged brain. 

Putting on the Mark Dunham Show (Public official, survivor, family man, volunteer) is hard. I keep trying to be the old Mark Dunham. There are cracks in my foundation.

I talk about all of this with my Aphasia friends. Nobody else understands. 



Monday, September 24, 2018

Neuro-fatigue 

Yesterday, I was completely wiped out. Physically and emotionally, I just needed a "time out!"

My wife keeps reminding me that 20% of my brain is dead. "Cut yourself some slack," she admonishes me.

My parents had a very strong work ethic, and we could never be "lazy." Even though I have brain damage, I still feel lazy if I’m not doing something productive. Childhood habits die hard.

I saw my neurologist last week for my yearly check up. She’s always been concerned that I tried to do too much. I am trying to think about my "limits."

I’ve been involved with some recent stressful issues. My son’s health is one thing. Also, I also am the chairman of the board for the College of Western Idaho. Chairing those meetings and strategizing about campaigns and personalities has been more stressful recently.

In addition, yesterday was the sixth anniversary of my mother’s death.

So basically I just crashed and burned. A massive headache ensued. I got very emotional. The stress of my son’s diagnosis, dealing with college issues, and feeling helpless got the best of me.

My wife insisted that I take a headache pill prescribed by my neurologist. 

I took a five hour nap yesterday. It helped.

But I still feel guilty. Blah, blah, blah.



Wednesday, September 19, 2018

Fake friends?


Every Wednesday, I attend the Idaho Aphasia, Apraxia, and Dysarthria Support Group which is basically a support group for stroke survivors.

Today we shared our experiences like losing friendships after strokes. 

It was an eye-opening session for me. All afternoon I’ve been thinking about real friendships. 

My mom died almost 6 years ago. On her deathbed, she bluntly told me "Maybe your strokes were a blessing. You can feel sorry for yourself or you can make a difference. You have a choice to make."

Every week I am blessed to gather with my fellow stroke warriors. I am so grateful for their strength. 

Mom was right.


Nevertheless, I did lose a lot of friends after my strokes. Many survivors tell the same story.

Some fell away because they were so despondent about the "new me." I get it but it’s sad.

Some so-called friends disappeared because I was not useful anymore. I didn’t have a political action committee perhaps? 

Some friends were supportive. For a year or two. But this is a lifetime sentence.

Some call to "catch up" and then I realize they need something. A little political insight? Background information on a business issue? 

But I do have real true unwavering friendships that I cherish.

I love those friends and family. Thank you. You know who you are.

A couple of years ago, I deleted at least 600 " "friends and followers" from Facebook and Twitter. I was subjected to bullying trolls mainly for political reasons.

After today’s session, I really thought about the value of real friendships. 

When you almost die or when your son gets illness, I have decided I’m not gonna waste my time dealing with toxic people, fake friendships and users. The purge will continue.

For my fellow stroke warriors, this article is for you:

https://www.psychologytoday.com/us/blog/resolution-not-conflict/201603/8-signs-toxic-friendship

Tuesday, September 18, 2018

Nick Lowe and good intentions

"Cruel to Be Kind" is a 1979 single by Nick Lowe and it was a favorite song of mine in high school.

The sentiments are pretty appropriate now. So many people believe that they have to be cruel to be kind to deal with the emotions my strokes and my son’s celiac disease.

I have joined so many Facebook groups dealing with strokes, aphasia, and celiac disease. Those online support groups are incredibly helpful for me.

With those three conditions our family has experienced, the common thread often is "It’s God‘s will" or "it will just take time to adjust."

Though well-intentioned, often people say "I have to say this. I know it’s hard. But I have to be cruel to be kind let you know that need to just buck up and accept this new reality."

Really?


Today, a stroke survivor on Facebook lamented that her brother basically said, "We’re all tired of your shit. Just get over it and move on. We’ve moved on. I don’t think you realize how much your stroke has affected everybody else in your life, I’m telling you to just stop dwelling on the past."

In other words paraphrasing this common sentiment "I know better than you so I’m telling you this to be cruel to be kind."

It seems people say things like that because "we are too close to the reality and don’t understand what’s really happening." 

My son’s celiac diagnosis is pretty recent. Yet I’ve already had people tell me that "Just make him change his diet right now. He just has to accept it. He’s always been picky and he needs to buck up."

It’s just not that easy. Adolescence is tough anyway with hormones, peer pressure, not wanting to be different, etc. Then you have the added pressure of this confusing and scary disease?

So when people say just get over it, I call bullshit.

It’s just not eating gluten free stuff. There is a wholesale lifestyle change such as cleaning out pantry’s, spices, cutting boards, toasters, shampoo, cosmetics, etc. Gluten is in everything. 

Just like with my strokes, it is hard to get over celiac disease. 


So when well-meaning yet uninformed people it is tough for me to keep my mouth shut. 

No, "He can’t just cheat for holidays. How about on Sundays?"

I think I might have to be cruel to be kind and say "just shut the hell up."

It’s like the old adage. You cannot be a little pregnant. It means it is a situation in which there is no ambiguity or no gray area.


There’s no gray area. I had two strokes. I have fibromuscular dysplasia. I have a aphasia. My son has celiac disease. 

My wife asked to deal with of this. She is a saint. Yet when people are so arrogant about her reality and trying to be cruel to be kind, it infuriates me. She doesn’t deserve this.

This is a lifetime sentence, and people think that it’s cruel to be kind when they have no idea about our reality.

Saturday, September 15, 2018

Sinatra and my son

When my son was diagnosed with celiac disease about a month ago, we have had ups and downs. He’s missed several days of school because of the illness.

A couple of days ago, he sick and he missed his morning classes. We let him sleep in.

I laid on the bed with him with his dog. I watched him for half hour in the dark. I stroked his brow. It was so peaceful.


About a beautiful song recorded by Frank Sinatra. This lyric summed up my feelings that morning:

"Quiet thoughts and quiet dreams,

Quiet walks by quiet streams,

And a window looking on the mountains and the sea, oh how lovely."

It was lovely morning and I lovely memory my son.