A brain stem
stroke happens when the brain’s blood supply is interrupted in this
area. This type of stroke can result in death, since the damaged
brain stem can no longer control the body’s vital functions.
The brain stem
controls involuntary functions like heartbeat, breathing, and
blood pressure. Nerves that are used for eye movement, hearing,
talking, chewing, and swallowing are also controlled by the
brain stem. Normal brain stem function is vital to survival.
Lucky for me, they
cause little to no damage to the
cognitive skills. But, unlucky for me, they cause
serious and varying degrees of damage to the motor skills.
In my case, my brain stem stroke
Central Pain Syndrome,
loss of speech,
Dysarthia and various other severe disabilities
associated with losing most of your motor skills. Some
of my other side-effects are:
Inability to walk
Inability to balance
Loss of muscle tone
Difficulty with swallowing
Loss of fine motor skills
Lack of concern about
Loss of short-term memory
So, here I was, quadriplegic and
unable to speak but extremely confident in my abilities and very
determined to succeed! I purchased an
pointer so I could make the cursor move anywhere on the computer
screen. I needed a way to type so I downloaded an
The on-screen keyboard lets me type anything I
want. I move my head and my infrared head pointer acts like
a mouse and moves the cursor to that spot on the computer.
I move the cursor to a letter on the on-screen keyboard and
click. When I click on a letter a list of words beginning
with that letter pops up. The more letters I type the list
of words becomes more refined. This is called Word
move the cursor to the word I want and click. I can
sometimes type out a 10 letter word by just typing the first
three letters. I click on my word from a list and then
the on-screen keyboard types it out.
After my stroke, I had dozens of
questions about what happened to me. I thought strokes
only happened to older people and I was only 36. I found a
message board just for stroke survivors. We were all
thrilled to be talking to others who could empathize with each
other. We started meeting every two weeks in a chat room.
A common topic of discussion was having a website where just
stroke survivors and stroke caregivers could meet.
In 1994, using a computer was brand
new to most people. It was especially difficult for stroke
survivors, as things like logic and deductive reasoning were
skills that were usually damaged by their stroke. Fortunately,
my brain stem stroke did not affect my cognitive skills. I
was one of the few who knew how to use a computer and they all
knew it. I volunteered to create our website. Now I
just had to figure out how to make web pages. I turned to
the Internet and found a tutorial on HTML. Slowly, I
taught myself how to make web pages.
created a network of websites that
now make up The Stroke Network website. The website had an
awesome message board that had dozens of forums to post about
our problems and receive responses from stroke survivors who
live all over the world. A blog for each member to write
about personal issues with life as a stroke survivor. And
a gallery where each member could upload personal pictures to
the Internet. The website also had a very nice chat room
so our members could discuss issues caused by stroke or just for
socializing. In addition, there were dozens of resources
for stroke survivors to browse through. There were many
links to articles, websites, books to purchase and sites for
financial assistance to the disabled.
Having a nice website can get quite
expensive. I could not keep paying all the bills out of my
own pocket. The website was becoming popular among stroke
survivors and stroke caregivers. Our membership was quickly
growing. My next step was to setup a 501(c)3 non-profit organization
so it could take over paying for everything from me. In
2001, The Stroke Network officially became
as a tax exempt non-profit organization. It has been an
on-line stroke support group for over 20 years. Its
is to provide on-line stroke support and information.
Also, I have started a blog that
has stories of inspiration written for stroke survivors.
As examples, one blog is written about how I learned to
with others. Another blog explains how I built up my
Melissa and I started dating
in the 10th grade of high school. Three years later, after we
graduated, we were married. I was married at 19 in 1977.
She came with me to Fort Riley, Kansas where I spent four years
in the Army. We have been together now for over 40 years.
When I had my stroke, besides being my wife, she also became my
We have two beautiful daughters,
Traci and Erin. They were only 9 and 12 when I had my stroke.
They both quickly accepted my new condition and even learned to help
their mother with minor caregiver chores. Now, they are
married. I have two great son-in-laws, plus three precious
Traci is married to Pete. They have one
daughter, Livi and one son, Petey.
Erin is married to Ryan. They have one son, Ryder.
Even though my stroke caused loss
of speech, Melissa, the girls and I have learned how to
communicate with each other. After my stroke, I had to
retrain myself how to form letters and to pronounce words.
I could not vocalize but I relearned how to move my lips, my
tongue and how to make my facial muscles move so I could form
words. This led to me being able to whisper words or mouth
out phrases and full sentences. I practiced and practiced!
Eventually, mouthing out words
became our primary means of communication The entire time that I
was relearning how to properly pronounce words, Melissa and our
kids were teaching themselves how to read my lips. We have
become quite good at communicating this way.
None of this would have been
possible without God leading the way and showing me what to do;
scripture verses have
helped me on this long journey. I love the Lord so much! He drastically changed my life and made something positive
happen. So, in order to do
something positive with myself I decided to dedicate the
rest of my life to helping other stroke survivors. I am very
driven about assisting them to find on-line stroke support and
information. I now know that this has always been God's plan for me.