Anatomy of a stroke – part 3

Posted on May 23, 2008 by Steve
 

The ambulance arrived in about 10 minutes.  It was after midnight when the ambulance attendants arrived in my room.  They do not have paramedics in France.  These were ambulance attendants and their job was to drive me the hospital.  The hotel was a very old building that had probably been renovated during the 60’s.  The elevator was extremely small.  I would estimate that it was no more than 4′ x 4′.  If you ever go to Europe you learn that America does everything big and that the Europeans do things that are practical and do just enough to make things work.  They definitely do not live by the same rules and regulations that we have to.  Maybe, that is why everything is so charming over there.  

Anyway, the attendants knew that they could not take me downstairs in their stretcher.  They took my hotel room desk chair and motioned for me to sit down.  They were planning to carry me to the ambulance in my desk chair.  When I sat down and started wobbling and saw them straining I decided to get back up and use them to steady myself against while we took the elevator downstairs.  I walked to the ambulance and lay down.  The streets of Toulouse are old; some are made of cobblestone and very winding and full of weird angle turns.  The ambulance was small and the ride was full of jerking motions, abrupt stops and gunning the accelerator whenever possible.  I have to admit, though, we made it to the hospital in record breaking time!

I was able to walk into the emergency room by myself.  The emergency room was completely dark.  What I remember of the emergency room was that it was in a wing of the hospital that dated pre-WWII.  The rooms had 8′ wooden walls but the ceiling was probably 20′ tall.  There were about 20 5′ x 5′ rooms in the emergency room ward.  I sat down on the bed and in walks Doogie Howser and a young nurse.  They were all of 20, at the most; neither one of them could speak a lick of English.   The hospital I was in was a teaching hospital.  I think I had two freshmen.

It was the beginning of a holiday weekend for France.  The French celebrate the beginning of summer, which would arrive on Monday.  Everyone had taken the weekend off except all of the Doogie Howsers who got volunteered to work in the real doctors stead.  Doogie looked very nervous and obviously did not know where to start with me.  I started the conversation by pointing to my neck, which had been killing me all day.  He turned to the young nurse and rattled off something in French.  She disappeared for a second and then returned two seconds later with a portable EKG in her hands.

What happened next was almost comical.  Neither one knew what to do with the piece of equipment.  They each took turns studying it and passing it back and forth with perplexed expressions on their faces.  It was obvious to me that the nurse had failed to bring the leads but I was not going to get myself in the middle of these two knuckleheads.  Finally, after much study, they both gave up and put the EKG machine down.  They both shot me embarrassing looks and acted like the device was not needed anyway.  I would have laughed except I was getting more and more frightened because the whole situation was surreal to me.  I was scared out of my wits because I was being treated by dumb and dumber and I was having very real health problems.

Doogie took charge and must have ordered something for the nurse to do because she left and returned with a hard neck brace.  Doogie said something in French that I loosely translated to mean that I had a pinched nerve in my neck.  The nurse put the neck brace on me and then they both quickly disappeared.  Apparently, they were satisfied that they had solved my problem.

I lay down in the bed, with the neck brace on and looked around my room.  I had a single bed, which took up at least 75% of my room.  I noticed a small pedestal sink next to the bed.  I was concerned because my stomach started churning again when I lay down.  I did not have vertigo again, thank God, but my mouth had started getting juicy.  I was back up in a flash with my head drooped over the sink.  I puked in the sink and then lay down again.  I was not down for five minutes when I was back at the sink again hurling my guts out.  What an experience having to lean over a puny sink basin and throw up with a hard neck brace on.  It was strangely awkward and took some training.  I know that my aim was not perfect but I did not care.

It must have been about 2 am by this time.  The emergency room was completely empty and darker than dark.  Nobody was around and nobody was coming at the sound of my heaving noises.  I was left to fend for myself.  The whole night had surpassed the surreal mark.  I could not believe what was happening to me.  I was alone, sick to death, puking my guts up, was in a 1940’s era hospital, had just been medically evaluated by Doogie Howser, my hospital room reminded me of a small walk-in closet and I did not know how to get out of this situation and get back to reality.  To be continued…

 

 

 

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Anatomy of a Stroke – part 2

Posted on May 21, 2008 by Steve
 

The first signs of my stroke happened on Friday at around 6:00 in the morning.  I woke up before my alarm.  The room was spinning out of control; REALLY spinning!  It was not like being dizzy but it was definitely vertigo.  The closest analogy that I can give you is that it was like being on a speeding circular carnival ride except that I was not moving; the whole room was doing the moving.  My head was killing me so I decided to sleep in and tried to bear the wild ride.  Luckily, the vertigo stopped after about two minutes.  This was an extremely frightening experience because I had no control whatsoever of the rapid spinning.  I had had a TIA and did not recognize the symptoms.  

I finally made into work around 8 am.  My neck and head were killing me all day.  We knocked off work around 8 pm and headed back to our hotel.  There was a group of about eight of us over there from work.  We usually did everything together and decided to meet for dinner around 9 pm.  We met at an outside café and I had a tasty dinner of entrecote and frites, steak and french fries.

I had just finished eating when the vertigo struck for the second time.  It was probably about 11 pm on Friday night.  It scared me to death.  Everything around me was twirling wildly.  I asked one of my colleagues to help me back to my hotel room.   I only had to walk about 100 yards but the muscles on my right side would not work.  I was walking like I was totally drunk.  Finally, my friend put my right arm over his shoulder and almost carried me to my room.

I was in my room for two minutes when suddenly things took a turn for the worse.  I was scared to death that I would collapse all alone in my room so I called my buddy and asked him to come to my room, ASAP!  I had not even hung up the phone when the twirling got so bad I could not stand it any longer.  I am talking about extreme vertigo!

My stomach started churning severely.  My mouth suddenly became all juicy.  I knew these were the symptoms of having to throw up.  It was over in a second.  I had made a mad dash for the toilet.  The bathroom was literally two steps away.  I made it to the threshold of the bathroom entrance when my entire stomach contents erupted through my mouth!  The wonderful entrecote, frites, salad, two glasses of wine and the delicious hot fudge Sunday all spewed out of my mouth with the force of a fire hydrant exploding.  Sound gross?  Well, it was gross!  I think I hit every wall in the bathroom.  I have NEVER thrown up so violently in my whole life!

Just about then, two of my buddies came flying through the door.  Both of their faces were panic stricken when they saw me.  There was no doubt in their minds that something serious was wrong with me.  One of them scrambled for the phone and yelled for the front desk to immediately send up a doctor.

The doctor arrived about 20 minutes later.  By this time it was almost midnight.  The doctor spoke little to no English and all of our French comprised of ordering food at restaurants.  We could order dinner really well but beyond that our French stunk!  The doctor made me lie flat on my bed while he took my blood pressure.  If I remember right it was like 160/100.  I know now that is not terribly high but he still looked very concerned.  He had seen the catastrophe in the bathroom.  He knew something serious was happening with me.  He waited 20 more minutes and then took my blood pressure again.  It was unchanged and he grew more concerned.  I made sure he understood that I had a bad case of vertigo.  If I remained very still the room would not spin.  If I was perfectly still I was okay but any movement and the room started twirling.  The doctor called for an ambulance.  I was scared out of my mind.  What was happening to me?  To be continued…

 

 

 

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Anatomy of a stroke – part 1

Posted on May 20, 2008 by Steve
Just what happens when you have a stroke?  Most people only get to see the after effects of a stroke.  Few actually get to hear some of the less personal details.  Only two people, the stroke survivor and the stroke caregiver get to know it all.  They see, hear and live the whole horror of what REALLY goes on when stroke happens. I will try to give you some insight so you will understand.  Usually, you only hear about how well a stroke survivor is doing.  There is nothing wrong with that, on the surface; BUT able-bodied people NEVER hear the true horror of what having a stroke is REALLY like!  Maybe, if more people heard what going through one is like then they would do EVERYTHING humanly possible to reduce their chances of having one. 

I see this as a dichotomy for most stroke survivors.  It is totally reasonable for a stroke survivor to tell people they know that they are doing well.  In turn, any stroke survivor likes to hear that they look good or are doing great.   Stroke survivors need to hear that positive reinforcement.  They are not going to be rude and tell you how they are REALLY doing.  Nor are they going to bend your ear and tell you about the nightmare that they are living.  But the other side is that able-bodied people NEVER get to learn anything other than strokes are bad and only happen to old people.

How do I know this you are probably asking?  The answer it so obvious!  I know because more people continue to have a stroke EVERYDAY!  When most people hear about stroke awareness they kind of hear what is being talked about but how many people listen and then take action?  Every 40 seconds someone has a stroke.  Strokes just keep happening; day in and day out.  So what does this tell me?  People are not afraid of having a stroke!  The attitude of society is that it will not happen to me.

Well, let me tell you about my stroke.  I want to tell you about the first days of my stroke.  I want you to cringe at some of the things you will hear.  I am aiming this blog at any able-bodied person who bothers to read my blog.  I have to warn you, though; it is not a pretty picture!

First, you need to understand some background.  I was an aerospace engineer working in the Quality Department.  My job took me all over the world on numerous business trips.  I frequently worked 12 and 14 hour days.  I did not mind it that much because I loved what I was doing.   My only complaint was that I had too much responsibility.  I was in a middle management position and had about 40 people working for me, plus upper management loved to pile more things on for me to be responsible for.

You might be wondering why the background information about me so important.  It is important because this is how strokes formulate.  Please do not ask me how!  I only know that practically every stroke survivor I have ever spoken to, which are literally thousands, have said that STRESS was a big part of their life before their stroke.  Also, chronic migraine headaches on a daily basis plagued them, too.

Anyway, besides having a fantastic job, I had and still have a beautiful wife and two gorgeous girls.   I had it ALL!  Good job, great salary, nice family, fantastic house, two cars.  I was loving life for the most part.  You know what they say; the higher you are the further you fall!

Enough of the background about me, here is my story; I was on a business trip in Toulouse, France.  I love France; the food is the best I have tasted in all the dozens of other business trips that I have taken around the world.  The French architecture and café restaurant atmosphere cannot be beat.  Toulouse is an old city and is approximately 90 miles northwest of the Mediterranean Sea.  To be continued…

 

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Count your blessings!

Posted on May 14, 2008 by Steve

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.  Nothing could stop me from carrying on.  I feel extremely fortunate that I have obviously been so blessed!  What is wild is that the blessings keep coming.  The visions that I receive when I want to do something would probably be scoffed at if I tried to explain them.  Believe what you want, though, the blessings, visions and inspirations are VERY real.  My accomplishments cannot be challenged.  I am not bragging about myself.  Seriously, I do not feel ownership for anything that I have done.  The real credit goes to my close relationship with God.  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! 

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Hello world!

Posted on April 27, 2008 by Steve

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. 

My last picture  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 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! 

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