The StrokeNet Weblog

Have you ever looked back, since the time of your stroke and tried to count your blessings?  I tried to count every blessing and there have been so many I was truly amazed.  I know I could not remember every one.  REALLY, my life has been blessed in so many different ways.  I will try to recount some of them and let you decide.  Okay? 

My first blessing actually happened about a year before my stroke.  We own a Cape Cod style home and we were debating whether to move and buy a bigger home or to just build an addition on.  We love our wooded lot with the stream in the back, our neighbors are fantastic and our location is perfect so we decided to stay and add an additional room.  Well, boy did that turn out to be a blessing in disguise.  I had my stroke a year later and you would not believe how much that room came in handy!  We have a bedroom and a bathroom on the first floor.  Now, with the family room we had just built I would have a room to hang out in all day.  We put my computer in this room so between this and the television set I was in good shape; everything that I needed was on the first floor. 

I had my stroke in Toulouse, France while on a business trip.  Several weeks before I left, I received an insurance package at work.  One of my options was to select a long-term disability plan.  It was very inexpensive so my wife and I decided to get the 60% plan for $16 per month.   Well, two months later I had my stroke and became permanently disabled.  I do not know what we would have done if we had not chosen that long-term disability insurance.  We would receive 60% of my salary, non-taxable!  We could not believe it.  There was another blessing! 

The next of my REALLY big blessings happened when I had my stroke.  Nobody would have ever realized how unique it was to have a brainstem stroke instead of an ischemic or hemorrhagic stroke.  My brainstem stroke was massive and devastated me and my family.  Brainstem stroke could not cause more overall destruction to the human body.  The key here is that it may have caused havoc on my body but cognitively I was 100%.  Sure my emotions were off balance, at first, but my intelligence was unharmed. 

At first, we did not know what hit us!  Like I said, my family was totally devastated.  What emerged from me cannot be explained by anything except a major blessing.  Let me explain further and you will understand. 

I was discharged from the Army in 1980.  I only went in the service for the GI Bill.  I made the cutoff date for the old benefits package by TWO weeks!  That meant that the federal government would pay for me to go to college for 10 years.  Why this is significant is because I received a BS degree in business and it took me all of 10 years to finish school.  I graduated two years before my stroke.  Had I not had an education in business and not understood the mechanics of the business environment I could have never started my non-profit organization.  I needed so much of a business understanding to make my non-profit flourish.  This was another blessing in disguise; EVERYTHING was starting to add up! 

I am almost finished, two more blessing before I tell you about my coup de grace blessing.  All of my physical abilities were totally blown out.  I could extend both of my arms and legs but there is nothing functional about that, although, it did help me to assist with transferring, another blessing.  The real blessing was that I could move my head side to side and up and down.  My head control was fantastic!  This would greatly lend itself to my next blessing. 

About one month after my stroke, both of my hands swelled up.  They must have been at least double of their normal size.  Apparently, I was sleeping with my hands on the bed by my sides.  My doctor said that this was causing my hands to swell with fluid.  He suggested placing pillows under them to keep them elevated.  Sure enough, about three weeks later my hands were back to normal size.  The odd thing was is that the fingers on my right hand were permanently bent at a 45 degree angle at the middle joint.  My little and ring fingers were kind of limp but my middle and index fingers were rigidly bent. 

You are probably wondering why this would be a blessing?  Well, let me explain the coup de grace blessing, which will hopefully tie all of this together for you.  On a whim, my wife moved my computer from my office downstairs to our new family room upstairs shortly before I was discharged from the hospital.  I could not move ANYTHING except my head until four days before I was discharged.  My head was still jerky and my arm had only slight movement.  This all changed after I came home.  I do not remember my fingers being able to move at all yet.  Within three months I was sitting in front of the computer.  My head moved wherever I wanted and the middle finger on my right hand could make a clicking motion. 

I knew exactly what to do because my cognitive skills worked perfectly.  I purchased an infrared headpointer and could move the cursor anywhere on the screen.  I tried several on-screen keyboards and then found the best one out there.  I could now type anything I wanted.   I use my right hand to click the mouse.  Every other finger is way too weak to click the mouse except my middle finger that had swelled and then became bent and very rigid. 

I was now ready for action.  On the computer I am not disabled.  Wait; let me count my blessings, first! 

I purposely did not write about all of my blessings.  There are way too many to count.  All I can say is that I could not have done anything unless I had a true relationship with Jesus Christ.  He is the reason for me creating my website and forming my non-profit organization.  I am truly blessed more than you will ever know! 

Everybody knows that stroke is the number 1 cause of serious permanent disability.  They also know that stroke is the number 3 cause of death and every 45 seconds someone has one; between 500000 and 750000 Americans have a stroke every year.  These are common well known statistics about stroke but what about the other statistics that are little known?  This data is almost equally compelling and to some people even more important. 

What about the fact that stroke affects 225000 people per year under age 45?  I believe this number.  I was only 36 when I had my stroke.  Practically every stroke survivor that I have met on-line since 1995 was under 40.  What does this number mean?  Why so many young people? 

I have a theory about this.  It is not based on scientific data.  It comes intuitively from dealing with literally thousands of stroke survivors through on-line chat sessions and message board forums for over 12 years.  Stress… stress is DEFINITELY a factor in strokes for young people.  I cannot think of a single stroke survivor that did not bring up their stressful work environment as being a large factor before them having a stroke. 

What does that tell you?  Of course the work place will not acknowledge their part in causing stroke.  I KNOW that too much stress played some role in causing my stroke; I was working 12 to 14 hours nearly every day of the week for months.  I was severely stressed out and it almost killed me! 

Take the fact that four out of five families will be touched by stroke.  That is 80%; 80 out of 100 families are affected by stroke.  That is a very large number when you think about it.  Only 20 people out of 100 are not affected.  Practically everyone you know, 4 out of 5 people, will know someone that had a stroke.  This number is extremely scary! 

Here is an interesting statistic; amongst women over 45, stroke is more common than heart attack.   Also, every year, stroke kills twice as many women as women with breast cancer.  Who would of thunk?  You hear so much hype about heart attack and breast cancer!  If you factor in stroke with these two and then just look at women affected by stroke, the seriousness of this will blow you away!  Why doesn’t stroke get more hype? 

Did you know that the incidence of stroke is double of that between African Americans and white Americans?  Whoa!  That means that of the 750000 strokes per year that about 500000 are African Americans and only 250000 are white.  Stroke kills 160000 per year and this statistic means that over 100000 of them are black. 

Does this mean that most people have higher incidents of high blood pressure?  Of course, hypertension is a factor in 70% of strokes.  This equates to 350000 cases of high blood pressure amongst the black community and 175000 amongst whites.  What in the world is going on with us?  I think that the lack of exercise and our fatty diets are the cause. 

These are just a few statistics people need to know about.  Statistics can tell a very powerful story.  All statistics about stroke are important.  Look at the statistics on our stroke education website.  I have pulled all of the statistics that I have talked about from this website.  Check out http://www.strokeawareness.org/TOPIC/statistics.htm.   While you are there it would not hurt to take a look around.  There is LOTS of good information! 

May is stroke awareness month! It’s our month to flaunt everything we know about stroke to the able-bodied. Stroke awareness is about honoring the millions that have fallen to stroke and trying to prevent this disease from continuing its deadly rampage.

My theory is to try to get young people to understand what stroke is about. After all, stroke is greatly diet and lifestyle driven. Eating fatty foods and not exercising can cause high blood pressure. We all know that high blood pressure is the number 1 risk factor for stroke.

I know that if we can get this message out to our children and have them understand the risks associated with having corrosive diets and dormant lifestyles could drastically reduce strokes. This is a totally unrealistic goal, though. Kids love being a couch potato, sitting dormant while playing on the computer or on a video game and eating massive quantities of junk foods. All of this is just asking for a stroke to happen in later life.

What are we to do? I have a couple of more crazy theories about what to do. One of my theories is to get the word out that stroke do not just happen to old people. I think that most people think you have to be over 80 to have a stroke. Proof is, according to the Center for Disease Control (CDC), 33% of people having strokes are over age 80 while 30% are between 18 and 64 years of age. This is an astounding number when you think about it. There is not much difference between the ages of younger and older people having strokes!

Another theory of mine is to get results from kids by scaring them straight. I think that every kid, as part of the high school curriculum, should have to take a field trip to their local hospital with a stroke ward. Seriously, this would be highly educational and would also show them what happens to people that have a stroke. Let them see the arms hanging limp! Let them see the physical horrors that every patient endures, the speech deficits, the loss of cognitive skills. Make them visit speech, physical and occupational therapy sessions!

Lastly, make the high school students attend a local stroke support group. Let them hear the daily grief and depression that most stroke survivors deal with. Let them see the raw emotions and crying that happen when stroke survivors think and attempt to talk about. Give them a school project where they cannot use an arm, speak or walk for 24 hours and then have them keep an hourly diary about the frustrations they face.

Our salvation from having strokes is not just to treat them or try to reverse the damages. It is to prevent them from happening them at all. Do your duty during the month of May. Honor those who have fallen from stroke. Get the word out to our young folks! Show them this trivia about stroke.

Visit our stroke education web page at http://www.strokeawareness.org/. Learn your fact about stroke and let the able-bodied know. Purchase your stroke awareness wristbands, lapel pins, hats, etc. Go to our on-line stroke awareness store at http://www.strokenetstore.net/ and buy something to wear

I am the President & CEO of The Stroke Network, http://www.strokenetwork.org/.  We are a 501(c)3 non-profit organization.  We have existed on the Internet, since February of 1996.  Our mission is to provide on-line stroke support and information.  We were the first on-line stroke support website on the Internet. 

 This is one of the last good pictures of me before my stroke.  I am definitely not 36 anymore but this picture has significant sentimental meaning to me.  This was the end of an era, a time when me and my family enjoyed our simple life and laughed easily.  This was when I did not mind getting my picture taken. 

Anyway, I was an aerospace engineer for a major corporation, Martin Marietta, until I had a massive brainstem stroke in June of 1994 at age 36.  My stroke damaged nine of the 12 cranial nerves, which affected most of the motor skills.  I am now effectively quadriplegic and cannot talk.  Luckily, none of my cognitive skills are not damaged. 

My situation has and often can be a nightmare for me.  I consider my circumstances healthier than most able-bodied people because I have been forced to leave the corporate battleground.  No more do I face the daily stresses and headaches that corporate life can bring. 

I have developed a close and loving relationship with God.   I tend to focus on God’s plan for me and have started an on-line stroke support community for all of those that cannot attend a local stroke support group.  To combat the deep seated feelings that tend to rise I keep myself extremely busy.  I believe that God has a plan for me and I am living it with His help.  I definitely could not do what I do and have done without Him guiding me every step of the way. 

 I type by using an infrared headpointer to move the cursor and can click the mouse with my finger.  I use an on-screen keyboard to type.  Without my cognitive skills, my excellent head control to move the cursor and the ability to click just one finger I could have never created my websites or written 99% of the web pages, including founding our non-profit organization. 

 I am truly blessed!