Wednesday, October 4, 2017

A deleted life


Recently I got a new cell phone. Changing my phone led me to update a lot of information including contacts and “frequently called numbers.”

On my phone I had several “ favorite” cell phone numbers. I had my my wife, my brothers, my sisters in law, and Heather’s relatives. 

But I also had several close friends that I used to call all of the time.

We don’t call each other anymore.

I just deleted those favorite numbers. It’s interesting when a life-changing event happens and your priorities change.

I did add my son to my favorite list. That makes me feel old!

I also updated my huge contact list. Honestly, there are many contacts who are dead. My contact list goes back at least 25 years.

In addition to deleting those souls, I am deleting professional contacts that are not useful to me anymore.

It is interesting to go through your past. Were they even worth it before my strokes? It’s all about priorities. Mine have changed.

Monday, October 2, 2017

Headaches and pin cushions


For about three weeks I’ve had pretty severe headaches. Since my strokes 5 1/2 years ago, I’m pretty in tune with all aches and pains. In particular, when I get headaches I get pretty focused.

Nevertheless, I just assumed that the headaches were caused by too much stress. The only thing that would take the pain away would be a Norco. And even that would basically dull the pain but not take it away.

When I had my strokes, I had a very consistent pain. My left temple throbbed and I had right side vision auras.

These recent headaches have been completely different. I would note the severity and the locations of these headaches just to make sure I wasn’t having another stroke.

In those three weeks, I only had two days with no pain. At my Idaho Aphasia Support Group last Wednesday, I told the group about the headaches. I also told the group that my wife said many times that “ given your history of strokes and seizures don’t I think it would be wise to check it out?” I always responded saying that these headaches were different so I wasn’t concerned.

At the support group, a stroke survivor — a woman of course! — essentially said, “Just like a man! What is wrong with you! Listen to your wife!”

I told my wife about the support group, and she laughed replying “ Women are always right.”

Finally, I went to the ER last Tuesday because the headaches we’re not getting better, and I finally realized that I needed to “check it out.”

Back to Saint Alphonsus Hospital again. The doctor remembered me because he ordered an MRI for me a couple years ago. When a doctor remember you it is somewhat embarrassing.

I described all of my symptoms and he ordered a CT scan rather than an MRI. Getting a CT scan should be simple. However, I have “bad veins.” We always ask for the best vampire in the hospital. It seems they can never find a vein or my veins “roll” or “blow.”


This was the same. Three different nurses, an hour and a half to find a suitable vein, and many tries and bruises just to do a simple three minute procedure.

I was chatting with one of the three nurses or maybe the doctor about my veins. Because I have this congenital condition called fibromuscular dysplasia which affects my arteries, I asked if that condition might cause the collapsing veins.

They simply don’t know. Nevertheless my arms now look like pin cushions.

Five hours later, the results were in: headaches we’re not caused by any further brain damage. That is great news!

On the other hand, we still need to figure out what is causing the headaches. Since we got the results of the CT scan, headaches have been better. Perhaps the headaches were a self fulfilling prophecy: I was getting more headaches and I got headaches worrying about it.

It is a conundrum.

Monday, September 4, 2017

Fibromuscular dysplasia  and painting a room?


Recently, somebody asked me what caused my strokes. It is a complicated answer. Therefore, I just say I had a "torn carotid artery dissection."

In reality, I have a congenital condition called fibromuscular dysplasia. Essentially, the arteries in my head are weak and it gets worse when you get older.

There is no cure however medication can control it through blood thinners.

Here is the official article about it written by  Dr. Ido Weinberg who is Founder and Editor in Chief of the Angiologist.com. He is Assistant Professor of Medicine in Harvard Medical School and a Vascular Medicine doctor in Massachusetts General Hospital. He also holds a specialty in Medicine from the Hadassah Hebrew University Medical School:

Fibromuscular dysplasia (also known as FMD) is a medical condition characterized by abnormal cell growth within the arterial wall. FMD is different from other blood vessel disorders that affect the arteries, such as atherosclerosis (blockage of arteries secondary to cholesterol plaque), vasculitis (inflammation of the arteries), and thrombosis (formation of blood clots). FMD can lead to different abnormalities of arteries, such as narrowing, a beaded appearance, or even serious complications such as aneurysms (bulging of the arteries) or dissections (tears of the arteries). FMD is not known to involve the veins or the lymphatic system. 

Artery Dissection: The Clinical Problem

Patients who have experienced a non-traumatic artery dissection have basically proven that their arteries are weak. Thus, there is a more than theoretical risk that these patients may experience another dissection; either at the same locatoin or at another location. Patients obviously would like to avoid another dissection, but also preserve as much as possible their quality of life. So the question is: What activities should patients avoid after suffering an artery dissection that was not precipitated by trauma?

What do we currently know about activity restrcitions after dissection?
The short answer is “not much”. We do know that some patients who have suffered an artery dissection may have another one. We also know that many do not. We know that in some patients we can identify a non-traumatic trigger such as cocaine abuse or elevated blood pressure. As long as these triggers can be avoided, another dissection should not occur. But in many patients we just do not know what the cause of the dissection was. 

In other patients we know that they have a real weakness of their arteries. For instance we know that patients who suffer Ehlers-Danlos Type IV can suffer from recurrent spontaneous artery dissection. However, in many patients we cannot identify who as at risk and who is not. For instance, we don’t know what makes some fibromuscular dysplasia patients more at risk than others or even if an FMD patients will incur a second dissection after suffering a first one.

In regards to risk of artery dissection with activity, we know that some activities are associated with artery dissection more than others. Carotid artery dissection has been described after chiropractic manipulation. Roller coasters are also a “no no”. Martial arts and other forms of direct hard physical contact also make good sense. But what about yoga? Painting a ceiling? Light weight lifting? Swimming? Sexual activity? We don’t really have a good sense for the risk associated with these. As a result recommendations are all over the place. While I do not know of specific studies comparing physician practices, I have seen all sorts of recommendations from my colleagues. In most cases, these are not based on fact, but rather on physician clinical assessment, for whatever that is worth.


What do we currently recommend?
There are no specific evidence based practice guidelines to guide activity restrictions after artery dissection. Large medical centers such as the Cleveland Clinic and Massachusetts General Hospital have come up with their own set of recommendations. These recommendations attempt to make life safe for patients after a dissection, without limiting their wellbeing. Here is a list of recommendations I offer my patients. It is based on my opinion and a result of internal discussion with my colleagues:
Avoid all activities which increase the risk of sudden, rapid, or severe neck motion or activities that maintaine the neck in an extended position for a prolonged period of time. Note: All activities that you may engage in cannot be covered. 

However these are a few guiding principles for activities to avoid:
* Chiropractic Neck Manipulation.
* Yoga and Pilates (Note: without neck manipulation these activities are acceptable).
* Heavy weight lifting (particularly neck and upper extremity). Light weights are acceptable. Tip: Avoid weights that make you grunt (this is also known as valsalva). Breath through all weight lifting maneuvers.
* Prolonged neck flexion or hyperextension for extended periods of time (i.e. ceiling painting, having hair washed at hair dresser or prolonged dentist treatments).
* Deep tissue massage of the neck (lighter massage is fine).
* Roller Coaster Rides or similar amusements type rides.
* Contact Sports such as martial arts and American football.
* Zip riding.
* High intensity aerobics (moderate aerobic activities such as swimming, cycling and running are fine).

Years ago, my neurologist cautioned me to be careful. We were going to Disney World, and she said your days of riding intense amusement rides are over.

But I had no idea that even painting a room could be an issue. Who knew I need to be careful washing my hair what's left of it?

But I have to realize that limited quality of life still means that I am living.


Tuesday, August 29, 2017

Withered Dreams and a Pinky


After my strokes, my right arm was very weak. I regained the strength and what tests have shown that both arms have the same strength. 

Nevertheless, I have noticed recently that my right arm and especially my right pinky seem a little "off."

I've also noticed that when I have seen pictures of me, my right arm is not straight and my right hand is almost clenched.

It is not really noticeable until I think about it. However, it seems more apparent recently.

Routinely I get acupuncture. Acupuncture has always helped me especially right after the strokes. My right arm was essentially just connected to my brain. I could move it but it did not seem like it was my arm. My acupuncturist helped reconnect my brain to my arm.

This month I've had several appointments with my acupuncturist. He also has noticed that my muscles especially on my right shoulder are incredibly tense. He is focused on my right side and my pinky has gotten better.

I wonder if this is "just in my head" or is it real? Do you have a stroke, every headache or ache is worrisome. Today as I am writing this, I'm laying upstairs with a massive headache. That's pretty normal for me. Norco is my friend.

As I lay on a bed in pain, I ruminate about my pinky. I have to much time on my hands...or my pinky.

Tuesday, August 22, 2017

Paranoia plus a new Blogger app

I have not written a blog post for several months. I just wanted to take a break and rethink my focus.

When you have a stroke, it is very common that your emotions change. Some people get angry, too emotional, or paranoid.

I think that paranoid is an interesting reaction. Recently, I've had to deal with some political backlash dealing with the College of Western Idaho which I chair. In addition, regarding my strokes, a few people have basically said "get over it."

In a way, I lost my incentive to write because of there instances. On the other hand, perhaps I am paranoid and have a very thin skin.

Another aspect is technology. My blog is a Google+ program. Google is not a user-friendly application. It took me months to delete an out dated blog. There's not a technical help support line.


In addition, "Blogger" in the App Store not work for a while. I tried different versions to replace "Blogger," yet they never work out satisfactorily.

This new version I am using on my iPhone is a very basic test. Writing this blog post on my phone.

Will it work? When I write this blog on my phone I wonder how it will translate to a basic desktop computer?
I
'm going to include a couple of photos to see how they appear. If this goes well, I hope to start blogging again.

For the paranoia, I decided I really don't care what those people say. This is my life. This is my blog. Let's see if this works!

Monday, May 22, 2017

Friends and social directors

It is common to lose some relationships after a stroke. Some friends cannot deal with the “new” friend. Some friends are there in the beginning, yet life goes on. The old adage “out of sight and out of mind” is pretty relevant.

For the survivor, recovery is every day. For friends, they need to move on. For a survivor, sometimes a sense of paranoia sets in.  Especially when friends do not contact a survivor for weeks at a time. Is it because I am different? Is it because my “new me” is uncomfortable to the “friend?”

Five years after my strokes, I seem to be dwelling on what I perceive to be the loss of friendships.  Is it me or is it their lives?

I was the organizer of my social group for years. I was the one who would say “Let’s have dinner” or “see a movie” or “let’s have a BBQ.” Since my strokes, the sense of isolation is more palpable than ever.  

I did a little experiment. I have some really close friends who I decided not to contact until they reached out to me. Some of those friends were so close before my strokes. After strokes, they were “there” but different which is common. They certainly were there after the strokes, but five years later? Not sure.

My experiment was NOT to contact them via text, calls, or emails. I do understand they might have a perception that they do not want to bother me. However, some of these key friends would know better.

Therefore, I did not contact them. No political or friend “things.” No “how have you been doing?”

The result of my almost 6 month experiment? Nothing. Even for a work issue, nothing.

Like I wrote, in the old days before my strokes, I am the social director. Today, I do not have the energy and the mental and physical capacity to be the one to initiate common courtesy.  I am tired of being the "one."

For some of those “friends,” they are on my “Favorite” list on my iPhone. It was for emergency but also they were some of my “favorite friends.”

The other night, I simply wanted to have a beer with a buddy. On Saturday, I wanted to have a burger and laugh with friends.

I had no one to call.

A neighbor had a party recently. We were not invited until it was obvious that we were outside doing yard work. Sheepish apologies ensued.

It is not just me. My wife has the misfortune to be married to me.

Stroke is NOT contagious.

Is my victim hood? I am too paranoid?  Losing friends after strokes is common. Here is an article about this issue:  http://www.strokenetwork.org/newsletter/articles/friends.htm

I do not know. Nevertheless, I am lonely. So. What do I do now? I do not know. My “favorite” list is diminishing in many ways.

Friday, May 12, 2017

Illusions of my old life

Recently, I had two “aha moments.” We went to a wedding two weeks ago for two classmates of mine. I met them when we were in junior high. It was the first time I have seen many of my classmates since my strokes. Second, my family was in McCall, Idaho for a science camp. It was the first time I was alone since my strokes.

The wedding was just wonderful. The bride and groom reconnected at our 20th class reunion. They dated ever since. The theme was “FINALLY!”  We are approaching our 40th class reunion in two years! It was so special for me to see “old” friends.

It was even more special that my best friend from junior and high school attended the wedding. He and his wife were so close to me even though college though he went to the Naval Academy and I went to Boise State.  The have now moved back to Idaho living near us. It seemed that the years melted away.

The most interesting aspect of the wedding was the reactions about “ME.” One classmate who I met in 7th grade hugged me and said, “I was devastated when I heard about your strokes. I assumed you would be a cripple. You look great! I still pray for you.”

A couple of classmates were even hesitant to approach me. It was almost like they did not want to hurt me.

The best part was just the hugs and the relief when they understood I was basically the old irreverent Mark.

The week in McCall was also so uplifting for me! The sense of complete independence was gave me such joy.

Though my classmates at the wedding assumed I was “back,” I will never be “back to normal.” When 20% of your brain is dead, something has to give!

Part of what I had to give up was a sense of complete security and the wisdom to be what I used to be.

EVERTHING I do has to be deliberate. My sense of direction, tying my shoes, using a knife without cutting myself, driving, using simple tools like a pair of needle nose pliers, carrying on a conversation at all, etc.

Everyday “things” that people take for granted..

This week was simply ordinary.

On Monday, I drove to Nampa for some college meetings. I asked a lot of questions. For hours!

On Tuesday, I had a doctor’s appointment in Boise and headed back to Nampa for another college meeting. After that, I took my mother-in-law to lunch for her 85th birthday.

On Wednesday, I attended a lunch downtown with 700 people. I talked to so many people, laughed, and hugged. Throughout the day, I did laundry. Then I had dinner with my brother-in-law. It was a great night and we talked about a lot of things. Just a typical conversation.

Thursday was my day of “rest.” I had a nice lunch with a friend of mine. Scrubbed toilets, vacuumed, watered our flowers and the neighbor’s as well (for the whole week), etc. Last night a “tree guy” removed a tree damaged from the winter. I was with him for two hours. He is a very talkative guy!

This morning, I worked on college stuff, had several conversations about the college, and now I am typing this blog. Tonight, I will attend the CWI nurses “pinning” ceremony. On Saturday, I will be in front of about 7,000 people at the College of Western Idaho.

Seems pretty boring yet I also remember a doctor telling my wife and me that my stroke was so devastating you won’t really recover much.

Honestly, still have trouble remembering that I cannot be “Mark Dunham” again. The wedding and solitude this week were inspiring for me. Yet, I do accept that – despite my recovery –  I am damaged and sometimes I feel like a fraud. Living my life thinking I am my old self again.

My life seems to be like an illusion where people believe “Mark Dunham is back” nonetheless I smile, laugh, and silently say “you have no clue about my reality.”