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.” 

Tuesday, April 25, 2017

Is Brain Injury to Blame?

There is a great organization called "BrainLine" which has resources and articles. I often read the information. Last week, a woman did a blog post about her husband's brain injury. For me, it hit me close to home. Here is the link: http://www.brainline.org/content/2017/04/is-brain-injury-to-blame.html Here is the article:

There’s a lot I didn’t notice about my husband a few years ago – the way he moves his arms when he walks or holds his razor when he shaves, the way he organizes his wallet or sorts laundry or returns voicemails. For seven years, I just wasn’t paying attention to these things. My husband was a grown man leading an independent life. There was no need to observe his every move.

Then came brain injury. And every little thing TC did or said or forgot or struggled with suddenly went under my microscope. I was a probing scientist, and he was my subject. It’s something I remember being warned of at the beginning of my journey—before I was even sure TC had a shot at recovery. A friend in the community wisely remarked, “Abby, you’ll never look at your husband the same way again.”

It took me some time to learn what she meant – that brain injury would become the lens through which I viewed everything: our circumstances, our future, myself, and especially TC. I couldn’t have known back then how difficult it would be to see beyond the injury, to the man inside. After all, how can one reasonably separate a person from his or her brain? They are one in the same – person and personality.

The other day my husband got in a small fender bender on his way to the movie theater. Fortunately, everyone involved was fine, and the car suffered only a small amount of damage. My first question to TC, of course, was “What happened?” But even as he explained the whole ordeal, the confusing turn lanes, and the apologetic other driver, I realized the details didn’t matter. From the moment I heard the words “car accident,” I had already decided he was at fault.

Anytime in the past four years that TC has forgotten a task, misread a text, gotten lost driving, or made any kind of mistake, my mind has attributed it to brain injury. There have been days during our TBI journey, I would ask myself a hundred times over whether TC’s behavior was a reflection of the real TC or the consequence of his brain injury. He couldn’t do something as simple as picking out a button-down shirt without me wondering what part of his brain was responsible for that choice. And in the process, I’ve lost sight of two really important, explanatory facts: no one is perfect and all humans make mistakes.

Even if my husband hadn’t suffered a blow to the head in 2012, it’s incredibly likely that he would’ve misread Google Maps, forgotten to pay a bill, or even gotten in the wrong turn lane while driving at some point over the course of his life. Some aspects of his behavior – like his aphasia or propensity to fatigue – are clear hallmarks of brain injury. But not everything is.

As caregivers, we have to tread very delicately in interpreting our loved one’s behavior. When our default assumption is to blame brain injury, we run the risk of creating self-doubt in the survivor. Mistrust breeds mistrust. So, if we cannot trust our loved ones to make sound decisions, how can they trust themselves?

Pointing the finger at brain injury also creates conflict and feelings of defensiveness between caregivers and survivors. No one wants to live under the microscope all the time and I know I’ve frustrated TC with my inability to give him both space and the benefit of the doubt.

It’s tricky, of course, because sometimes brain injury is to blame. And sometimes the consequences of a simple mistake are significant, such as losing one’s medicine or forgetting to turn off the gas burner. I’ve had enough conversations with other caregivers to appreciate that brain injuries run the gamut of severity and that some survivors really do need 24/7 observation.

The best I can do in my own relationship is try to remember the philosophy that also guides my teaching life: avoid snap judgments. I’ve had many experiences teaching that one kid who always breaks the rules or stirs up trouble. And just when I think I can predict that child’s next move with certainty, he or she does something that humbly forces me to revise my thinking. Teaching, like caregiving, is hard work. 

Sometimes we get so bogged down in the small moment-to-moment decisions, that we become blind to the big picture. Just as kids and survivors err, so do we. And the fairest, kindest thing to do sometimes is to pause, ask questions, and remember our own human fallibility too.

Tuesday, April 4, 2017

Sensory Overload

I have not posted for a long time. Life is getting in the way. In a good way most of the time! I have joined many Facebook groups dealing with “brain attacks.” One of my favorites is the “TBI Life Coach.” I am posting this whole article because it is very helpful. For me anyway!  
Sensory Overload
Sensory over stimulation
Sensory over stimulation or 'Flooding' occurs after brain injury because the brain's 'filters' no longer work properly.
Sensory over stimulation or 'Flooding' occurs after brain injury because the brain's 'filters' no longer work properly. It is an exhaustive situation if more pieces of information or stimuli are received than the brain can handle. A stimulus is information that we perceive through our senses; see, hear, smell, taste, touch (external stimuli) or through our mind or our body / proprioception (internal stimuli).
In over stimulation feelings of panic can prevail upon the brain-injured. Our study showed that fear can be overcome if the person with brain injury has been exposed frequently to over stimulation.
The person may be sweating, have tremors, can be vomiting, and thinking is difficult.
These are the basic reactions of the body to survive in a situation that is perceived as very dangerous. It is also called the fight or flight response. One person is going to flee from the overstimulation of the noise or stimulus of the moment. The other person faints. Most of them cannot think anymore or are very upset first.
The basic emotion of fear and the ensuing responses are generated and directed by the amygdala. The amygdala is part of the oldest part of the brains, the limbic system. This system is a kind of emotional sentry. All that matters is survival. If there is danger, immediately adrenaline, noradrenaline and cortisol are released into the body to flight, fight or freeze.
Amygdala
At the same time, the neo-cortex, also called the rational mind, will stop the mind from thinking. Because, after all, in threatening situations there is no time to decide what the best plan of action will be.
A rapid response of the amygdala thus ensures that we can avoid the danger before we realize that we find ourselves in such a situation.
On this page you will find some videos about this problem.
Summary: By over stimulation people are no longer able to rationally deal with the situation. Fear can prevail and the amygdala creates a fight-flight-or freeze reaction. After brain injury the processing of stimuli is often disrupted.
This often gives a brain fatigue/neurofatigue.
It's not all in your head,flooding /sensory over stimulation can't be seen, unless sometimes in some individuals signs like sweating or a red head...or people think that you are in panic, for it reminds them in a way of that.
SOUNDS
Overstimulation by sounds occurs in background noise where the sounds cannot be cut out. Not being able to follow a conversation with multiple sounds. Noise intolerance. Irritation in rhythmic sounds, ticking of a clock or buzzing fluorescent lighting. Shoe steps on a wooden staircase or wooden floor, squeaky doors, etc.
Many complaints are reminiscent of or equal to hyperacusis. Hypersensitivity to sound. Many people also experience pain in sound.
Sensory overstimulation occurs when seeing patterns or colors. Seeing a variety of nice stuff at home. Letters that are too close to each other with no blank lines. Seeing movements, seeing moving hands or people who wiggle their legs but also seeing a multitude of people. Seeing a multitude of some objects. Seeing details like prints, shades, bricks etc.
Even seeing unordered higgledy-piggledy or 'for sale' articles can give too much stimuli for the brain to see it in a shop. Like a bargain basement, not stacked shopping baskets, etc., etc.
LIGHT
Sensory overstimulation by light occurs in reflected light, in certain lights (halogen! fluorescent lighting!), Backlight or changes of shadow and light while driving, bright light, lots of light, flickering candles etc.
Notorious is car driving on a road where are many trees and low standing sun behind the trees.
FEELING
Sensory overstimulation by feeling occurs in people who suffer from motion, touch, being moved, vibrations etc..
SMELL
Sensory overstimulation by smell can come about by enhanced sense of smell and can include nature smells, food smells, natural odors, body odors, perfumes and deodorants (including nursing staff and caregivers!)
MULTITUDE OF THOUGHTS OR LISTENING TO WHAT IS BEING SAID
Chronic overstimulation
Chronic overstimulation is not healthy. It is pure stress.
The endocrine system changes (increased stress hormone level) and long-term chronic overstimulation also changes ones nervous system. Actually this can even make an individual more sensitive to overstimulation than he already was. Symptoms include physical symptoms like headaches, stomach problems, decreased resistance, disturbed sleep, extreme fatigue, or even depression, burnout or anxiety.
Our perception takes place by:
Senses
Vision - seeing
Auditory - hearing
Tactile sense - feeling
Olfactory sense - smelling
Taste - tasting
Nociception - sensation of pain
Thermoception - feeling of heat or cold
Sense of balance - balance
Proprioception - body awareness
Cognition – what we learn to know by the senses
Percieve (basic cognition *)
Attention and concentration (basic cognition)
Thinking (basic cognition)
Memory (basic cognition)
Applying knowledge (basic cognition)
Understand (basic cognition)
Language skills (basic cognition)
Assessing (metacognition)
Reasoning skills (metacognition)
Sense of reality (metacognition)
Emotion (social cognition)
Empathy (social cognition)
Practical language skills (social cognition)
Sensory overstimulation is caused by:
Damaged filtering
All stimuli, the important as well as the unimportant stimuli, enter with the same strength. They are not filtered.
Detour = Delay
When stimuli of brain cells need to be guided around brain injury this causes a delay in the perception. This is not only the case with focal, localized injury, but also with diffuse injury that is spread across the brains. It also takes longer to interpret the stimuli. That is one of the causes for a person with brain injury to be flooded by stimuli. This is also called delayed information processing.
There is an abundance of stimuli in idle mode which cannot be processed. Just like a PC that crashes through having a slow processor.
Fragmented perception
Many people with overstimulation by brain injury perceive every independent detail by hyper selection. It is difficult to see connections between details and to see, to oversee or to hear the whole.
This can occur both in the auditory and visual area. As long as there is one sound stimulus, the conversation is central and there is no music playing in the background, there is no problem with experiencing sound. However, in the case of buzz or loud noises in the background, the processing of auditory stimuli is not done properly.
This can also happen in the visual area. People cannot ignore details in the image. In the case of rain, they see each drop on the car's windscreen and the windscreen wiper. They see each individual in a group or every cobble on a cobblestone road.
Distorted processing can cause overstimulation
Hyperacusis - hear too much
Cerebral Visual Impairment CVI - double vision, seeing varying sharpness, depths may be huge or not, spaces may seem larger or smaller
Agnosia - not being able to recognize an object, a sound, smell etc.
Non-synchronous processing of stimuli in the brains. Signals do not enter the brain area synchronously.
Low frequency noise
Some people have problems with low frequency noise.

You may find these links useful https://www.retailmenot.com/…/sensory-overload-while-shoppi…
http://www.oneplaceforspecialneeds.com/…/library_sensory_pr…