Thursday, November 9, 2017

Airports and Aphasia

In my career are used to travel all over the nation. Navigating airports, freeways and my hectic life was second nature. In October I had to travel three times. I went to the New York City, Denver and Las Vegas.

It’s like my old days. And I do not miss it.

Practically, the condition of Aphasia is difficult to understand. There are many types aphasia.

Right after my strokes, looking at gates in airports stumped to me.

For example, this photo of a random gate “B 18” seems relatively simple. However, aphasia manifests itself in different ways.

“B 18” did not register in my brain first. I could not understand numbers or letters. Just symbols to me with no cognitive correlation.

In addition, “B 18” could be unrecognizable for some aphasia survivors. Instead of seeing a letter and a number you might just see an unrecognizable distortion in your field of vision.

I could not drive after my stroke for several reasons. My brain was in a fog and my reaction times made me too scared to be on the road.

In addition, simple reading of highway signs what’s the problem. When you could not even understand your name, the concept of reading a highway sign such as “Speed Limit 40” is dangerous. My brain didn’t connect to the images on signs.



I am grateful that I can drive again and happy that I can function like I do considering my aphasia.

This is the reason that I am getting better: Neuroplasticity is the change in neural pathways and synapses that occurs due to certain factors, like behavior, environment, or neural processes. During such changes, the brain engages in synaptic pruning, deleting the neural connections that are no longer necessary or useful, and strengthening the necessary ones.

It seems my brain has recovered enough that I can deal with my aphasia, read and drive.

Monday, November 6, 2017

God’s plan for me?


Today I went to Saint Alphonsus Hospital have lunch with a fellow stroke survivor and two wonderful people who work at the hospital. One is a nurse and the other one is a speech therapist.

Both of them are saints in my eyes.

The speech therapist told me that a 35-year-old man just had a stroke and has aphasia like me.
After lunch, we visited him with his speech therapist, his fiancé and his parents.

His dad commented that he read a poster about me. I forgot that there is a poster of me on the rehab floor.

The basic reason for the poster is to give people some hope. I agreed to do the poster just because I wanted to let people know that there’s always hope.

Is fitting that I have lunch with a stroke survivor and his wife who visited me in my hospital room five and half years ago. I thought my life is over. They really comforted me during those dark days.
He said that God has a plan for me and it might be giving hope to stroke survivors. And I agreed.

We both talked about giving back and being useful. I actually said that when I have dark days where I just want to crawl into a hole and hide, I realize that I cannot.

I am grateful that I have the ability to reach people and use my strokes story.
Was it a coincidence that 10 minutes later I found out about this new stroke survivor?

I do not think it was a coincidence.

When I met the stroke survivor today, I could see in his eyes the loss. He seemed scared which is completely understandable.

We chatted and I basically said that I could not talk at all after my strokes. I sad that every stroke is different but you will get better.

Perhaps this is God’s plan for me.

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!