Friday, January 17, 2020

Handwriting and aphasia

A couple of days ago, I blogged about my new years resolutions. Today, I did my first "handwriting" task. Writing 4 sentences was really tough. I knew it would be. I got stuck on the words "sentences" and "tough."

It is my "handwriting." I have always "printed" rather than using cursive. My 3rd grade teacher, Mrs. White, was not "nice to me" (in my 3rd grade mind) so I rebelled and printed.  

Her only redeeming trait was she drove a 1959 Buick Electra which I loved. But I digress.

The rest of my resolutions are a work in progress. I have not used the treadmill yet. Often, I endure headaches. For about two days, my headaches also caused nausea and lightheadedness. It was too dangerous to try.

Today, of course, I feel better so I am doing too much again. I took my son to school. I changed an outlet in our kitchen. I stained some wood for a project. I installed a lighted outlet cover. I did my chore of handwriting and I am writing my blog.

Earlier in the week, I spent hours changing my emails and passwords. That task was difficult. After my strokes, I had concept of passwords and login information.

From work to personal credentials it was a huge problem. Think of all of the programs you use such as email, Netflix, banking, etc. I have more than 20 services I use.

8 years ago, all of my passwords were stored in my head. My brother had to reconstruct all of my passwords. This week, I changed everything. The difference is I have several copies of my new passwords "just in case something happens."

It all seems so simple yet this has been a tough week because my brain was overwhelmed. Using my treadmill is too much today. And not safe. So I will take my dog for a walk. Baby steps. 8 years.

Monday, January 13, 2020

New Year's Resolutions and Reality

Sometimes I have posted a blog about New Year's Resolutions. Of course, I do not adhere to my resolutions. Like most people. Perhaps I am lazy or my resolutions are not realistic. On the 8th anniversary of my "big" stroke, I might be too somber to even write a blog. My goals for the New Year are simple:

1.  Do a blog post every month.
2. "Handwrite" 4 sentences every other day.
3.  Use my treadmill three times a week.
4.  Start to outline a book about my life and my strokes.
5.  Do not beat myself up too much.

It seems simple enough. The list seems attainable. Of course, there are some caveats to my list.

BLOG:  When I started my blog it was for my son. After my strokes, my blog morphed into strokes, aphasia, sadness and some hope. It was my journal. My blog served several purposes.

For months in rehab, several therapist "made" my start to blog again. The Occupational Therapist thought using a keyboard and using programs such as "Word" would help me "go back to work" and function "like I used to function."  8 years after, those therapies did help. The fact that I am using a keyboard is proof. Using a blog program presents me with other issues. Because of aphasia, it is very difficult for me to type. More often that I can describe letters in a keyboard are a mystery. Even now, the letters "P, K, and Q" are nonexistent in my brain. Grammar? Gone. Pronouns? Gone. Numbers? Gone. Even now.

My Speech Therapist also thought doing a blog would help me with my aphasia. Writing (on a keyboard) stimulates part of the language centers which were damaged in my brain. When I "write" I have to silently "talk" what I "keyboard."

There are other issues with my blog. Honesty, I did not think anyone would read my blog. It is just a guy trying to express himself who has lost the creative spirit I had. In the beginning, some if my post were dark and expressed many innermost thoughts. 

I did not really think people read it or cared other some close acquaintances. I realize know that though my audience is limited, I have to be careful to not reveal too much. Reporters have taken note. Others as well. 

Therefore, my blog is much more guarded. I will strive to blog more consistently yet keep up appearances.

HANDWRITE:  The worst part of my strokes and aphasia (other than the effect on my family and finances) is the devastating loss of language. Reading and writing (typing and handwriting) were the basic of my being from my job and hobbies. All gone. After years of therapy, I can read proficiently. It is OK. I can function. Handwriting is vaporware. In the 10 month of intense therapy, two therapists made me handwrite 4 sentences 5 times a week. After the first year, I quit because I could. It was too hard.

I am listening to an audiobook that make me realize I will "use it or lose it." Though I am really busy, it is easy for me to write "the aphasia is so hard and I just cannot handwrite." 

Listening to "Healing the Broken Brain" by Mike and David Dow makes me ashamed about lack of try to handwrite. I cannot even take note in a meeting. I will handwrite.

TREADMILL:  The key of stroke recovery is some sort of exertion. Because of my fibromuscular dysplasia, I cannot elevate my heart rate too much. So too, I cannot ski though I would love to ski with my son. My vision was affected by my strokes and I cannot safely move my head around. Treadmill? No excuse. I will use my treadmill.

BOOK: After my strokes, I thought I would have written a book about my strokes. I would have been a public speaker flying all over educating people about strokes and aphasia.  Listing to the audiobook by the Dow brothers gives me incentive. Nevertheless, this will be so hard. Reliving the strokes will be emotional. The physical and mental toll will be exhausting. Currently as I am typing this blog, I have a headache. It will get worse. Using my brain creatively, problem solving, etc. will be zap my brain. I need plan that involves realistic goals with time to rest my brain. I will commit during this next year to identify source for an autobiography and common themes to tell my story.

DEAL WITH ME:  I do need to continue to understand my constraints. There are triggers such as stress and exhaustion. I am also nearing 60 years old. I am already cutting back on activities I can avoid such as meetings, travel and positions which cause health risks, mental and physical. I will take time to rest my brain. Once I was a grammar Nazi. I cannot beat myself up when I blog and write in a journal. Verb tenses be damned! 

Therefore, I am done with this post. My brain is on fire. I do not have time to edit. I cannot fathom inserting photos and clipart.

Sunday, December 1, 2019

Bookstore and Reality

Today I drove to Barnes and Noble bookstore. Before my strokes and my aphasia, reading was my hobby and my therapy. 

Despite two years of vision therapy reading is still difficult for me. I used to read three or four books at a time. 

Today, I wandered through the aisles and became more progressively depressed.  

I left the store and I took a picture of me outside looking into the store. That is how I feel.

My wife reminded me that at least I could drive to the store alone. She stressed that I am much better off than many survivors. That is true.

But I’m still sad. Libraries and bookstores were a huge refuge to me. I could escape into a book and leave my reality behind. My reality is missing books. Almost 8 years. 

Monday, November 25, 2019

Simple tasks and injuries

For several months, I have been updating our upstairs with new carpet and paint. It seems simple really. For my “DYI” projects, we have new carpet in two bedrooms plus new paint in three rooms and an upper hallway. Those jobs took days!

In addition, also helped a couple of relatives repair some carpet issues. Those “simple jobs” took several hours.

In the “old days” that would have been simple.

In high school and college, I installed carpet for a living. With my older brothers who owned a residential construction firm, I learned a lot such as painting and finish work. Those skills served me well throughout when I flipped house as a hobby. I still have the tools and the skills.

However, because of my strokes and aphasia, updating carpet and paint tested my brain and stamina.  

For example, measuring carpet used to be easy. When my brothers would build a house, I would install the carpet. Carpet rolls are usually 12 feet by whatever we need. I would get a huge roll of carpet, I would complete a complicated carpet job in several days. In a 2,000 square foot house, I would use my math skills to figure out how to make cuts without too much waste. I could easily take 4 pieces of carpet and seam the carpet into on piece for a bedroom for example.

Installing two rooms of carpet in our house was confusing for me. I cannot understand simple math and a basic tape measure is almost foreign. Plus, sometimes my short term memory is an issue. If I actually understand the measurements, I cannot remember the measurements!

For the bedrooms in our house, my 14 year old son did the measuring. We triple checked ever measurement “just in case.”      

For paint, I could figure out how much paint to buy in my head. I was adept “cutting in a ceiling” without getting paint in the ceiling and the wall.

Should I even mention the blood? I will.

When I was a finish carpenter and a carpet installer, I routinely cut myself. It happens. For carpet installation, you have to use very sharp razor blades. I have scars to prove it.

Doing a simple job has risks for me now. Because of the aphasia and apraxia, I cannot be in a hurry. Often, I will grab the wrong side of the carpet knife which is dangerous for me. In my head, I grab the knife correctly yet in reality I use it incorrectly and cut myself. These two pictures might explain that happens.

These are three basic tools to install carpets: Hammer, razor knife, and a “tamper.” One photo shows the knife blade on the top of the photo. The other photo shows the knife blade on the bottom. If I get careless, I grab the knife “upside down” and cut myself.

Which I did recently!
Given my strokes and aphasia, I am proud of myself. Because of blood thinners I need to take to survive, I completed all of those tasks with minimal blood loss and bruising.

The next project I will undertake is a new and simple mantle and painting the fireplace. I hope my son will to the measuring and have Band-Aids ready for his dad!

Wednesday, November 13, 2019

Selfish and thoughts and prayers

Recently, I was told about two wonderful people I know who are experiencing some tough times. I know that I document my life through my blog.

I also think that my blog is often complaining about my situation.

Originally, my blog was intended to keep a “digital diary” about my son. Obviously my blog transitioned from my son’s life to my stroke story. That is pretty selfish.

Thinking about my friends who are dealing with some devastating news, my wife and I have said that we are so lucky! Despite robbery, strokes, diseases, etc. we consider that we have a great life.

It is so rough when friends and relatives are dealing with really bad “stuff” because we feel so helpless.

The adage “thoughts and prayers” just does not cut it.    

Thursday, November 7, 2019

Family History of Strokes?

Recently, I had the opportunity to participate in a research project on aphasia. It was fascinating and exhausting. The three and a half hour session tested many cognitive functions.

At the outset of the testing, the researcher asked about my strokes. I mentioned that on January 10, 2012, I experienced a carotid dissection. During that awful day, the doctors determined that I have a rare disease called “fibromuscular dysplasia.” Three days later, I had a massive carotid dissection which left me with aphasia and other assorted issues. 20% of my brain died.

The research team asked me of there has been any family history of strokes. Thinking of the fibromuscular dysplasia diagnosis, I replied “no.”

However, in retrospect, my maternal grandmother did die of a cerebral hemorrhage. I did not really know my mother’s real mom. My mother found the identity of her biological mother when my mom was 22 years old.  That relationship was not a “Brady Bunch” situation, the contact was limited at best.

I do remember my grandmother a little. I do know that she was a heavy smoker and one lung was removed as a result.

After my strokes, I asked my mother about her mother’s death. According to my mother it was “just cerebral hemorrhage.” She died instantly.

I now understand that my mother used that term because it is the simple explanation. “She died of a stroke.” Given my experience, a simple term like a “stroke” has some many variables.

Did my grandmother really have a cerebral hemorrhage? There is no way to know at all. Her cause of death could be accurate or just family diagnosis and/or unformed “he said, she said” urban myth.

There are two types of strokes. I had two ischemic strokes which is the most common. 87% of strokes are ischemic.  Ischemic strokes happens when blood flow through the arteries that supplies blood to the brain because blocked.

On the other hand, a hemorrhagic stroke happens when an artery in the brain leaks blood or ruptures (breaks open). The leaked blood puts too much pressure on brain cells, which damages them.

It seems that my grandmother and I had two different kinds of strokes.

It would be interesting to know if my grandmother also had fibromuscular dysplasia. My grandmother died more than 40 years ago, and my mother died 7 years ago. My mom’s half-siblings have no interest in my or my mother. I do not know if they are even living. So that is a dead end.

Fibromuscular dysplasia is a very rare genetic disease.  Fibromuscular dysplasia is the abnormal development or growth of cells in the walls of arteries that can cause the vessels to narrow or bulge. The carotid arteries, which pass through the neck and supply blood to the brain, are commonly affected.

Women have a much greater risk of fibromuscular dysplasia than do men. Fibromuscular disorder tends to be diagnosed in people in their early 50s. I was 50 years old when my strokes happened.

The study last week made think if my grandmother had the same disease. I will never know. Plus it really does not matter in the scheme of things.

I do worry that my son has Fibromuscular dysplasia. He is 14 years old. I wonder when he will ask about the family history of strokes.  

Tuesday, October 29, 2019

World Stroke Day for me

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 carotid dissection because of a genetic condition called fibromuscular dysplasia.

As a result I have conditions called aphasia and apraxia. I am plagued with routine throbbing headaches, mental and physical exhaustion and “brain fog” when I do too much.

The bottom line is 20% of my brain is dead. 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.

But I really want to stress one of the lucky ones.  I am leading a productive and happy life despite it all. 

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.

However, there has been a rise out of younger people having strokes mainly because of energy drinks. 

And finally, heed the warning signs of strokes: “BEFAST.”