The purpose of this blog is to inspire other stroke suffers to keep on working.  It  is to show that hard work and a positive attitude gives you the best chance for recovery.  My hope is that families maintain a positive attitude and help the stroke sufferer as best they can.  Also this blog is to illustrate what is involved in stroke recovery. Namely the nuts and bolts of daily recovery.

I tried not use people’s last names or the names of the hospitals  involved. I did this to avoid any legal entanglements. What I wrote is all true. I have great gratitude to the hospitals and people involved in my recovery. I hold the doctors, nurses, therapists, technicians, first responders, and anyone in the medical field in the highest regard.

February 23, 2013- One of those days

It started out as a routine day. I was working in Houston at a chemical plant. It was a cold and windy day.  I was working with a team of three and I was forty feet up a smokestack, which I had climbed via a ladder mounted on the side of the  stack.   I was alone but I had a radio.  When suddenly, I felt a wave pass over me.  I knew something was wrong, but what? I felt like I was on the deck of a ship, gently rocking. The world felt like it had gotten fuzzier, and weird.  I decided to wait it out and hoped it would pass.  But it didn’t.  And  I was getting weaker.  I decided to get off the stack while I could.  As I looked down the ladder, I thought “This could get ugly”.  I got weaker as I descended.  I concentrated to keep my grip on each rung of the ladder. Slowly I descended, until I reached the ground, exhausted. I sat down to rest.  Instead of the rest re-energizing  me, I felt exhausted.  I tried to get up and walk to the lab trailer, but I collapsed. My muscles were paralyzed yet I could feel sensation in my extrematies.   I was fully aware of what was going on but bewildered as to  what it was. As I lay on the ground, I heard the radio chatter.  “Where is Randy?”…..silence…..”He has fallen at the base of the stack. ” The plant’s first responders were summoned and they arrived within minutes. They rolled me on my back and asked me questions, but I could barely talk.  One of them said, “I think he has had a stroke”.  My thoughts raced.  “Oh crap, this can’t be happening, I’m only 58.”. An ambulance arrived and I was taken to a local hospital.

In the hospital, I started to recover.Though weak and shaken, I could talk and ask questions , and my hands and arms had recovered to the degree that I could sign forms. My prospects were looking hopeful.  A priest showed up to give me Last Rites, which I found confusing. It turns out my mother had been notified and demanded I be given Last Rites. I was started on an IV of tPA, which is a clot buster and flown by helicopter to a near-by hospital that specialized in strokes. We were met by a nurse and I was  taken to the ICU to be checked in. It was decided to take me to get a MRI. On the way , I started having trouble breathing. Real difficulty. There was a problem transferring me to the MRI table.  The technicians were mostly petite women and I was a big guy(6’2″, 280#). My breathing worsened. Fade to black..I don’t remember anything from this point.

It was one of those days.



I woke up, groggily aware that I was in the hospital. The gravity of the situation returned immediately.  Oh crap, I am in the stroke ward of the ICU. Eventually  I was told that my family from Wisconsin was on the way. My best friend was on the way too. Life in the ICU was a mixture of drama, uncertainty, waiting, and helplessness  My stroke was the result of a blood clot in my brain stem. I was paralyzed.  In medical slang, I was “locked in”. I could move my eyes.  I could hear.  I could feel when touched. And I could  feel pain.  But I could not move anything below my eyes.  My brain was foggy but I was fully aware of what was happening.  I was on a respirator,  I had an IV.    And I was hooked up to a bank of instruments that monitored my blood pressure, heart rate, EKG, and oxygen level in my blood. Eventually a feeding tube was inserted through my nostril, down my throat, into my stomach..  And I got a catheter.  This was a depressing and unimaginable situation.

A stroke occurs when blood flow has been interrupted to the brain.  This is due to either a blockage due to a clot, or a blood vessel rupturing.  Each stroke is unique.  The severity of the stroke depends on the location  and the length of time the brain has lost blood flow. My stroke occurred in the pontine area of the brain stem.  The brain stem controls involuntary functions of the autonomous nervous system. This includes breathing, heart rate, blood pressure, body temperature, equilibrium, swallowing and many other rudimentary functions essential for life.  The brain stem is also the gatekeeper between the brain and the spinal column, hence my paralysis.  I waited passively as the nightmare unfolded. I was hoping for a quick recovery, but that wasn’t meant to be.

My best friend Mike arrived first. He ended up staying in the hospital, day and night, sleeping in the waiting room.  And he hated everything about hospitals. The heartbreak and drama were too real. He had recently lost his father after a lengthy stay in a hospital.. My mother and father, my brother Kevin, and god-daughter Abbey showed up next after an ardurous flight from Wisconsin. My brother Bruce was soon to follow.

Meetings with the doctors followed, though I was not there. I had a feeling of helplessness. I felt like my life was out of my control. I was dependent on the kindness of family, friends, and strangers  I  hated to be helpless and a burden.  It was decided that because my clot was in a difficult location in my brain, surgery to remove it was considered too risky    But I was going to have surgery to get a traech and then surgery to get a feeding tube.

I was feverish. I was sweating and always felt hot. The ICU was kept very cold and everyone else was freezing. But, not I.  Also, I noticed when they changed out my urine bag, the urine was a dark brownish color. The most pain I had in the ICU was the plastic mouthpiece for the respirator.The problem was that my tongue was always getting smashed between the hard plastic of the respirator and my teeth  Since I could not talk or move my tongue out of the way, this was like torture. I remember the great relief I felt when the mouthpiece was inserted in such a way that it did not crush my tongue. Eventually I was taken off the respirator. The doctor was surprised I could breathe on my own. This was a good sign.

On day 6, Dad, Bruce and Abbey returned to Wisconsin and Mike returned to Austin.  My mother, and Kevin remained behind. Now it was time for my operations to begin. The first was the traecheotomy.  It is a procedure where an incision is made in the neck to create a reliable airway. I was wheeled into a small operating room. The staff gathered and chit-chatted among themselves as they waited for the doctor. I remember an anesthesiologist, and I believe two nurses being present. The doctor arrived, more chit-chat, the anesthesia started and I drifted off…..When I awoke, there was a foggy re-entry to reality.  Oh crap, here I am again.  I was desperate for this bad dream to end. I tried to move my arms, but nothing . They remained limp at my side. I was bummed out. I was hoping for a miracle, but I wasn’t aware that one was happening.

The next day, I had a feeding tube inserted in my stomach. Basicly the same procedure as the day before…chit-chat, anesthesia, drift off, oh crap. The feeding tube would provide a way to give me nourishment other than an IV. After the stroke, I had lost the ability to swallow.

I had made some progress. First I could faintly move my index finger, the next day, the finger next to it and eventually rotate my wrist a little. It was small and slow progress, but it was progress.

The next step was to decide which hospital to go to next. My mother and brother chose the one  where they could spend the night with me in the room. They made the right choice. I will call it Hospital B. I had been in the ICU ten days. Tomorrow I transfer to Hospital B.

Thanks to the staff at the ICU, especially my doctors and my two favorite nurses, Lauren and Ramel. Their job is a difficult and stressful one.




Building a web at Hospital B

The day of the transfer was a difficult one. I was excited to be moving on. It was a sign of progress. The morning was spent getting ready- Paperwork, getting cleaned up, gathering possessions, waiting and more waiting.  One strange event was that the nurse would normally give me one syringe of something (soapy water?) to encourage a bowel movement. Today he chose to give me three. I could not ask why because I couldn’t speak.The ambulance was late, which as the norm instead of the exception.  Of course I had a bowel movement just before they arrived, and the nurse had to hurriedly change my diaper. That was a sign of a long day coming.  I was eventually loaded on the ambulance, and a Keystone cop-like journey to Hospital B followed. Of course, I had another bowel movement in transit. We arrived at Hospital B, just before shift change, late on a Friday afternoon. This put the nurse in a bad mood. She put some paperwork in the room and left, my mom read it, the nurse returned and snapped at my mom to not read her stuff.  Of course, this infuriated my mom. We were off to a great start.  My tech, Janet came in to clean me up and change my diaper. My room had a great view overlooking Rice University.  Eventually the night shift nurse arrived.  She was from a temp agency.

She was a Jamaican with long dreadlocks.  When she came in to do her rounds, she didn’t seem to know how to do anything.  I feared she was an imposter. Later, when I was in pain and needed medication, she was nowhere to be found. My mother buzzed and checked the desk, but nobody was around.  She showed up about an hour later and gave me my meds.  My mother and I were pretty ticked off. What if there had been an emergency?

Her technician was a slender African guy. I needed my diaper changed again later that night. It was a comical scene of changing diapers of a big sack of potatoes. Unfortunately, I had soiled the sheets too and needed new sheets.  The African dude was unhappy and frustrated.  I was too but at least I had a clean diaper and sheets.  Eventually I fell into a fitful sleep.  I was awoken later that night when the Jamaican nurse came in to draw blood.  I was feverish at this point.  I drifted off to sleep and had a nightmare.  My nurse was part of a Jamaican vampire gang who were harvesting my blood for resale. This was going to go on for eternity.  I was paralyzed and doomed to be a blood bank. This seemed real and terrifying.  I was so happy when the sun came up.  I had survived the night. I slept most of the next day.  My mother  complained to the hospital and I never saw that Jamaican nurse again. Thank God! Sunday was a day of rest and Mom and Kevin moved in to share my room.

Monday was evaluation day. It was the fourteenth day since the stroke. Every time you change hospitals, you are re-evaluated to assess your status and plan your therapy. First was the mental exam, to determine if you knew who you are, where you are, when it is,  etc. Are you Randall, are you in Houston, is it Tuesday, etc.  I couldn’t talk so my only communication was eye movement. Up and down for yes; and left and right for no. Then body movement and speech were measured.  I could weakly move  three fingers and my wrist  of my left hand. My doctor was Dr. Ahmed.  He explained that hard work was key to my recovery. The harder I worked, the better the chances of my recovery.  What I would be doing was similar to a spider building a web.  One strand at a time.  It was going to take a lot of time and hard work to rebuild my web.

Day Fifteen was the start of my therapy.  Armando was my physical therapist and Mary Jo was my speech therapist. They were the first of my many fantastic therapists.  There are three types of therapy- Physical, Occupational,and Speech.  Physical therapy focuses on the legs and maintaining posture.  Occupational therapy focuses on the arms and hands.  Speech therapy focuses on speech and swallowing. The first day was pretty basic, more orientation than work.

My standard day started with routines.  Watching the sun come up over Houston and ‘greeting’ my mother and brother when they woke up. Eventually the nurse arrived. Blood draw, needle pricks, shots of anti-clotting medicine, having vitals taken (blood pressure, pulse and temperature), diaper maintenance, changing out the IV, and traech maintenance followed. The respiratory technician would run a vacuum tube down the traech to suck out the mucus. The process ended when the lungs were touched and irritated. This would set off a violent coughing fit, which while uncomfortable, would clear my lungs. I had a strong cough.  Therapy was started by transferring me from my bed to a gurney. Two strong assistants would slide a board under me and slide me onto the gurney.  I would then be rolled to therapy. An example of Physical therapy would be to transfer me to incline table. I was then  strapped down and the bed was slowly tilted til I was upright.  This was done to increase my endurance and help my body to adjust to the blood pressure changes for blood flow to my brain when upright. If I got light headed, they lowered the angle of the table.  Everyday this procedure was repeated to build my strength and stamina. My occupational therapist would move my arms and hands, to stretch them and limber them. At night, my mother and brother would help with my therapy. My brother providing the muscle to help me move my legs and my mother helping me with my hands, where I would try to squeeze a ball and try to get more movement in my fingers. Slowly I was getting stronger. Everyday had a small improvement. I was re-building my web.

Communication was difficult. I couldn’t talk, and I could barely move my fingers and left forearm. My eyes were my only reliable option: up and down for yes, left and right for no.  Communication had to be almost telepathic. I could get the attention of my mother or brother, but it was slow and difficult to communicate what I  needed. So we built a list of my common requests ( I need my body adjusted (to relieve muscle pain), I need a new cool towel on my forehead, I need pain meds, etc). They would go down the list until I moved my eyes up and down.  The issue was when the new problem was not on the list. Then a tragi-comical frustrating game of  schrades followed.  For example, once I was sweating so much, the stinging sweat was burning my eyes. My mother or brother would ask a question, my eyes replied yes or no.  After a frustrating long banter of questions, my need was communicated and added to the list.  My mother and brother showed so much patience,  more than I ever could have.

While I was at hospital B, they installed a PIC line, which was an IV line that stayed attached to my arm. It was installed by a medical technician while I laid in my bed.   The line ran up my vein in my right arm to my heart. It had three ports that could be used to draw blood, inject medicine, IV feeding, etc.   I was always worried it would somehow get pulled out and I would bleed out.

On day eighteen, the doctor stopped by and suggested I work extra hard on my right side. That is one thing about strokes, they tend to affect one side more than the other.  Even though I was right handed prior to the stroke, my left hand was much better. Apparently the left side of my brain had more damage, being that the left hemisphere controls the right side of the body.  Also my right arm had the PIC line, which greatly inhibited therapy. But I continued to  toil away, building my web.

Sleeping at night was an ordeal.  Laying all night in one position caused the body to tighten up, combined with the general tightening of my muscles from a lack of use. This resulted in pain, which resulted in not being able to sleep.  I would be given painkillers to help me fall asleep, but when these wore off and I awoke later in the night, I would be in pain and not be able to sleep.  Since I was paralyzed, I could’t adjust my position in bed or even buzz the nurse. I would look over and see my mother and brother asleep, but I couldn’t communicate to them my need to be re-positioned or to get more pain medication.  My only option was the oxygen monitor on the index finger of my left hand.  It had a blinking red light on it, and I would move my finger to try to get the attention of my mother or brother if they woke up.  If I was really hurting, I would work to wiggle the oxygen sensor off my finger, which would set off a beeping alarm because the instrument thought my oxygen level had fallen too low.  This would wake up somebody and they could help resolve my problem. Usually by adjusting my body, and rearranging my many pillows. Also, every night the techs would roll me on my side. The great fear was of developing bed sores.  So I would be rolled on my side, usually in an uncomfortable position, and have pillows stuffed under me to hold me in place.  This happened twice a night. Plus the staff would come in at all hours of the night to take vitals, draw blood, etc.  A good night of sleep is a gift that is taken for granted.

On day 19, I was strapped into a chair for a short period in physical therapy. This was to further build my strength and stamina, with the goal of someday sitting upright. It sounds easy but it was very strenuous. Day 20 was the first day I could move three fingers on my left hand.  Later,I was taken off the breathing machine at night.

On day 22,  Armaundo, my physical therapist, said he thought I could make a full recovery if I worked hard.  I took full recovery to mean I could achieve independence rather than regain 100% of my former functions.  I decided my minimum goals were I could use a walker, lived on a diet of applesauce and yogurt, and was a mute.  I wanted my independence back. On day 24, my traech was downsized to make my lungs work harder.    Also my left leg was starting to get better. I could weakly move it side to side.

During this time, friends who were in town would stop by to visit.  I wasn’t much good for visiting but I appreciated it and it gave my mother and brother someone to visit with.  Robin brought some homemade chocolate chip cookies. They sure looked good but the odd thing was I had no appetite.

On Day 25, they installed a MIRR valve on my traech. This was to enable me to “speak” through my traech. Yes, that was weird.  It had a reed in it, like a musical instrument.  I tolerated it, but I did not like it. I worked with my speech therapist, Mary Jo.  As time went on, my speech got louder and my enunciation better, but it was still low and flawed, but it was a start.

On Day 26, I sat upright in my chair for two and a half hours.  And I moved my right wrist sideways. My right side was starting to wake up. Building my web continued everyday. My doctor came by and told me a representative from a renowned Rehabilitation hospital (ranked third in the country) was coming to evaluate me for admission. This was great news.  My mother had gotten to be friends with Nazy, whose husband was next door.  My mother thought she looked like a young Elizabeth Taylor. She had an inside scoop where the hospital kept extra pillows and wash clothes.  After my daily hospital therapy, I would do more therapy with my mother and brother. My right hand was starting to be able to grip and I could straighten my fingers except my pinkie.  And I practiced the alphabet every night.

On Day 27, I had the dog and pony show for the next hospital.  It was short and it went well. They wanted to see what limbs I could move and to what extent, and make sure I didn’t have any serious medical issues , such as bed sores.

On Day 28, I had an ultra sound test to check for clots on my arms and upper body.  I expected the blood flow to sound like my heart (ka-thump, ka-thump) but it sounded like a raging river. It made me wonder if this was why exercise was so beneficial because the fast circulation would scour the circulation system of plaque that would settle in the eddies of the circulation system.    Later that day, I was informed that I was accepted to the next hospital. hip-hip-hurray.

On Day 29, My traech was capped for two hours to force me to breathe thru my mouth and nose again. It went well.   I will be transported to  to the next hospital tomorrow.   Thanks to Dr Ahmed, Armaundo, Mary Jo, Janet, Ashe and all the staff at the hospital for working so hard and being gracious. My family and I spent the night packing and planning the next day.




Rehabilitation. The journey continues at Hospital C. Holy Ground.

Day 30, March 27, full moon.  The morning was spent doing the usual morning routine followed by finishing packing, paperwork and good byes. The transfer ambulance was hours late as usual. And the drivers did not know where the next hospital was.  Oh well, situation normal.  We arrived at Hospital C late.  I was put on the sixth floor, the same floor that congresswoman Gabby Gifford stayed during her rehabilitation.  We settled into my new room and I had my vitals checked while my mother and brother unpacked.  My mother would sleep in a reclining chair next to my bed and Kevin would spend the night in a motel.  They would start a search for an apartment tomorrow.  For me, tomorrow would be evaluations and goal setting.

Day 31, I met my main nurse, Heather and my main tech, Martha. They were two angels sent to me in my hour of need.  My usual morning routine continued.  vitals were taken, traech maintenance done, and an anti-clotting shot to my waist. I was still on an oxygen assist line just under my nostrils,  I had a catheter, and a PIC line with an IV.

Evaluations started with a psyche exam.  The psychiatrist asked the same questions as the last hospital to determine if I knew who I was, where I was, what was the date, who was the president, etc.  Then cognitive testing was done.  I passed. Then physical testing for strength, range of motion, and speech were performed to determine the extent of my damage.    A lot more didn’t work than worked. I had to keep building my web….  My mother spent the night in my room again while Kevin stayed at the Comfort Inn. They had a lead on an apartment with a church group.

My first weekend was spent resting and settling in.  My roommate was Otis, an elderly black gentleman, who had suffered a stroke.  He was in bad shape but much better than I.  He had the window on his side of the room while I had the door, looking out on the nurses’ station.

Day 35- Today was eventful. My catheter was removed and now I would pee in my diaper instead.  It was a step forward, but a hunbling one…. My mother and brother found an apartment from a church group.  A man named Monson (same as I) had canceled and my mother got the apartment.  It was nice, affordable, close, and on the bus line.    I spent the night alone.

Day 36- My feeding was transitioned from an IV to using my feeding tube.  This would remove the IV line that always got in the way during therapy.  Now I would be fed through the feeding tube into my stomach.  First the meds were crushed in a mortar and pestle by the nurse.  Then they were washed down the tube with a couple of cans of liquid food. Then the line was rinsed with water.  I could feel the coolness of the liquid in my stomach and I usually got hiccups

Day 37- My father and my brother, Bruce arrived today after flying in. They were exhausted. The plan is for my dad to stay with my mother in the apartment and for Bruce and Kevin to return to Wisconsin.

I kept my MIRR valve on all day….  I  had removable casts made for my right arm  and  leg.  The idea was for me to wear them while sleeping.   They were intended to hold my foot and wrist in a more normal position so the tendons and ligaments did not become stiffened in an undesired position.  I was able to talk night shift into not rolling me over. From this point forward, I slept on my back with the end of the bed with my head slightly elevated. A hospital bed has the ability to raise or lower the head or foot of the bed and to raise or lower the whole bed.

Day 38- Bruce and Kevin left for home. They would stop in Austin to pick up my mail and get it forwarded to Wisconsin.  Kevin would pay my bills and  be my accountant. Thanks Kevin, even when a person is laid up in the hospital, bills continue to have to be paid.  Today was the evaluation meeting to discuss the options for my treatment.  My therapists were assigned.  Emma was my physical therapist. Victor was my occupational therapist and Jamie was my speech therapist.  Three more angels arrived to help me in my time of need.

The PIC valve in my right arm was removed.  It was a relatively simple procedure and minimal blood was lost.  It felt good to get that contraption removed.  Slowly I was ridding myself of the paraphenalia of stroke recovery.  And I was getting more movement in my right hand.

Day 39- Kevin was hurrying home to see a dying friend.  Johnny B died the day before he got there.  I cried uncontrollably because I felt responsible for the delay.

Day 40-A weekend of no therapy except what I did on my own.  The highlight of my weekend was that I could change TV stations with the controls using my now  long fingernails. The small TV was mounted on a mechanical arm that would swing over the bed.

Day 42. My typical day would start with vitals taken, feeding and meds,  glucose testing, and shots. Then a respiratory tech would show up and do a series of procedures.  First the traech would be cleared with a small suction tube ending by the tube touching my lungs which set off a fit of violent coughing.  Then a mask was put over my face and a fog for some medical reason I did not know was released into the mask for about five minutes followed by a inhalation from a aspirator. Then I was dressed and transferred to a wheelchair, usually by my number one technician/angel, Martha. She would start my day with the chant of ‘Rock and Roll’.  That would bring a smile to my soul and I would be ready for therapy.  I would  need to have an oxygen sensor on my finger and a bottle of oxygen with a tube running to my nostrils. Then I would be wheeled to my therapy session by a tech or therapist. Everyday a schedule was delivered. It showed what time different therapies were scheduled.  One hour each for occupational and speech therapy and a hour and a half for physical therapy.

Day 43- Today’s highlight was my physical therapy session with Emma.  I was doing time on the inclined board. I was strapped in the upright position.  Linda, who was really funny, was the technician. Otis, my roommate was there with his technician, Lafayette. We were playing balloon volleyball, where we would pop the balloon upward and try to keep it from hitting the ground.  This was to build our stamina, eye to hand coordination, and keep us entertained. After the game, Emma put on some Irish music and Linda and Lafayette did their interpretation of an Irish jig.  It was hilarious.

Day 44-In Occupational Therapy, Victor stretched out my right arm to stretch the muscles and tendons and increase my range of motion.  Stretching sounds easy, but it is very painful to stretch tightened muscles and tendons. It brought tears to my eyes, as Victor stated “There is no crying in therapy” My arm was very sore afterward.  In physical therapy, I was upright on the inclined board for a longer duration.  Speech therapy focused on facial excercizes and talking….  My buddies from a band called Austin Heat showed up around lunch. Don, Austin, Dexter, Freddie, and Brian.  They brought a good vibe to my day and we had some good chuckles.  It was a nice break to my day.

Day 45- I had a swallow test today.  This is a test where various foods were given to me to swallow. They started with something easy like pudding.and progressed to something more difficult like a dry cookie.  These were mixed with a Barium solution so they could observe the swallowing sequence using a medical monitoring instrument.  I did okay with the pudding but choked on the dry cookie. So I failed. One of the effects of a stroke is that the swallowing mechanism gets messed up. While swallowing seems so simple, it is actually a series of well timed rhythms and movements. When the swallow starts, the throat sends a contractive wave to move the food or drink to the stomach, and simutaneously signals the flapper valve to close over the lungs and open to the stomach.  A stroke might damage the strength of the contraction and/or slow the signal to close the flapper valve over the lungs. The weakened throat contraction could cause choking while the delayed flapper valve closing could allow food into the lungs, which could result in pneumonia. This is a great concern for stroke victims.

Day 46- Having to wear a diaper as an adult was a humbling experience. And changing a diaper on a full grown disabled man was quite a process.  First the tech would roll me over on one side. I tried to help as best I could but I was essentially paralyzed. And what muscle control I had was very weak.  I would try to keep myself in position by holding onto the side of the bed.  Then my old diaper would be pulled out and my butt would be wiped clean, disinfected, and dried.  Then I would be rolled over onto my other side to make sure I was clean.  Finally a clean diaper was put on me and  snugged up.    This occurred about three times a day or as needed. The dirty diaper was usually due to urine as a good, regular bowel movement in the hospital is rare.  The hospital records bowel movements religiously.  A week without a bowel movement ends with the dreaded enema.

Day 47- The highlight today was that the oxygen requirement was removed. Prior to this, I had to be hooked up to an oxygen bottle for transport or therapy.  In the morning, when the respiration tech came in to clean my traech, they would check my oxygen saturation. Occasionally I would be borderline, like 91%. So they kept me on oxygen until today.  One more piece of stroke paraphenalia gone.

Day 48- The Hoyer Lift.  When it was time to transfer me from my bed to a my wheelchair, a Hoyer Lift was used because it was too difficult for a person to lift me and transfer me. The Hoyer Lift was an electric Lift that had an arm like a crane. The first step was to put a lifting tarp under me similar to a stork carrying a baby.  The blanket which had grommets in the corners,  was manuevered under me. The blanket fit like a canvas chair, when the grommets were attached to the arm.  I was lifted out of the bed and the Hoyer Lift was rolled over to my wheelchair and I was lowered into it.

Day 49- April 15. The Boston Marathon bombing happened today.  It put a cloud over the day.

Day 50-The dark cloud in Boston got thicker and weirder.  But life goes on and so does therapy. My physical therapy now involved putting me in a special chair, which when cranked, would raise me to a standing position.  Emma kept checking my blood pressure and asking me if I felt light-headed. I remained standing with my legs and elbows supporting me, and we usually played balloon volleyball or an easy board game.  The hard part was getting me in or out of the chair.

Day 51- The water wars.  I felt I got too  much water every morning. The last thing before therapy was to feed me my liquid diet and water.  Then I would end up urinating in my diaper a couple of hours later. I could not hold my bladder and it came with little warning.  This would often happen during therapy which resulted in embarrassment and missing therapy time.  So I would refuse a good portion of the water recommended to me by the dietician. I would rather be a little thirsty and get my full regimen of therapy. This would result in butting heads and compromising with the dietician.  Also I was losing weight faster than she preferred. But I was happy with the weight loss. This conflict with the dietician would continue throughout my stay.

Day 52- Laps.  One of the ways I would get exercize was to do laps in my wheelchair around the sixth floor unit. It was a square shaped hallway.  I was slow and it was very difficult.  My left side did most of the work. My right foot stayed on the footrest and my right hand did little work.  While the floor appeared flat, it seemed hilly to me.  It had sagged a little through the years, so where the beams were located was high ground, which created a gently rolling road.  I often had to make several attempts to clear the high spots.

Day 53- Rotisserie Baseball. My buddy Bob dropped by.  We are in a rotisserie baseball league, called Rotohead.  It is a pretty intense keeper league for old style hard core roto owners.    It was great to see Bob and talk about sports instead of hospital life.

Day 54-55.  I am now doing some therapy during the weekend.  One is a social session where we play games.  And some speech therapy.

Day 56- Today’s highlight was my first field trip.  We went to The Houston Natural history Museum.  It was my first time out of the hospital since my stroke.  Another step on the road to recovery.

Day 57- Therapists have excellent posture and are strong.  This is necessary because they have to be able to transfer the patient from the wheelchair to the exercize table and back.  The exersize table is padded and about the same height as the wheelchair seat.   The wheelchair is locked in place, the seat belt is undone, and a transfer board is placed between the wheelchair seat and the table top, forming a bridge.  The therapist squats down, keeping their back ramrod straight, and give the patient a bear hug.  They then lift and pivot the patient so his butt lands on the transfer board.  Then a series of lifts  to scoot the patient down the board to the table.  The patient is now ready for therapy.  When finished, the process is reversed.

Day 58-Swallowing- Because of the delayed reaction time between my swallowing and the flapper valve closing over my lungs, swallowing water results in coughing because water enters the lungs.  So the solution is to add a thickening agent to the water, to make it move slower down the throat. This is accomplished by adding a packet of thickening agent to the water, which results in a thin syrup, which tastes horrible.

Day 59- Today I had day surgery to remove scar tissue in my throat due to my traech. It started with a ride in the ambulance to the hospital where the surgery would take place.   The hospital was mammoth.  My mother rode along on another ambulance comedy.  The ambulance drivers didn’t know which door to enter. We ended up circling the hospital and entering through the emergency room and found our way to the day surgery ward, where I was put in a private alcove. Once there, the nurse prepped me for surgery. Then I was wheeled to surgery, chit chat, the doctor arrived, the anesthesia started, and down the rabbit hole I went. I woke up in my alcove.  My mother was waiting and I returned to a groggy reality. Eventually the ambulance crew arrived and returned me “home”  I was not supposed to talk for 24 hours.

Day 60-I have been at Hospital C a month.  At 9am every weekday, I now do an extra occupational therapy  class.  It includes exercizes like picking up pennies individually from the table and putting them to another can.  Or picking up clothes pins from a tray and attaching them to a vertical rod from bottom to top. This sounds simple, but it was difficult for me.  It improved the dexterity of my fingers and required me to lift my arm.

Day 61&62- the weekend. Therapy was self therapy, a social game playing session, and speech.  My parents dropped by both days.  My dad shaved me….Every weekend had a shower day, in addition to three showers or sponge baths during the week.  This was accomplished by transferring me from my bed via the Hoyer Lift to a special rolling chair designed for showering.  I was naked with a towel over me. I was rolled into a shower stall and sprayed down like a car. Then my hair was shampooed and body washed with a soapy wash cloth.  There was a flexible hose with a shower head used to rinse me off.  I was towel dried and returned to bed.

Day 63- They capped my traech today.  The traech was plugged, which forces all the breathing through my nose or mouth. It went okay except when I laid  down, it became very difficult to breathe.  That was very disappointing.  If I can’t tolerate capping the traech, I may require more surgery….Today was the first time I tried pureed food, which is grinding up a perfectly good food into a mush and putting it in a form that for example looks like peas. Hospital food, yuk.

Day 64-I had a stomach x-ray today.  I have not had a bowel movement in a while, so they are checking for poop backing up in my plumbing. An enema may be in my near future.  Also I still have a hard time breathing when my traech is capped. Bummer times two.

Day 65-The low point of the day was an enema. I was rolled on my side and a containment dam of absorbent towels was built behind my butt. Then soapy water was pumped up my rectum and I waited.  Not very long. An explosive wave of poop, followed by a horrible sound and smell. My colon convulsed until I was drained, exhausted, and empty.  Finally the god awful clean-up and it was over. A necessary evil.

Day 66- My therapy schedule was expanded again.  I get two 60 minute occupational therapy sessions, 90 minutes of physical therapy, two 30 minute speech therapy sessions ending with 60 minutes in a gym session(riding a stationary bike, step master, and arm stretches, all done from my wheelchair).  My speech therapy sessions involved supervising me eating pureed food, to insure I didn’t choke.  The other 30 minutes was spent  having me work on breathe control by blowing into a spirometer.

Day 67- Today the doctor put a smaller tube in my traech.  It made it harder to breathe.

Day 68 & 69- The weekend. Breathing continues to be difficult, especially when I lay down.  I may have to get the surgery done.  Otis could be pretty frisky.  When they got him ready for his shower, I heard him say “I’ll take mine off if you take yours off”.

Day 70-The GOB (Get Outta Bed) Team. My morning routine has changed.  Instead of Martha getting me ready for therapy, the team of Linda and Matt drop by.  They wash my face, put my clothes and shoes on, and then transfer me to the wheelchair.  This was done by physically transferring me instead of using the Hoyer Lift. It is faster but harder on the technicians’ backs…. Otis checked out today. He’s going to an assisted living facility. Good luck, buddy.

Day 71-My new roommate was Chris. He was not there because of a stroke but because of an accident and had a brain injury…. My stay at the hospital was extended because I continued to make progress. The insurance company demanded reports of my progress every week. The insurance company has been very fair and I feel blessed.

Day 72-Chris REALLY did not want to be there! Chris apparently had hit his head in a car accident and had bleeding on the brain.  He was suffering from paranoid delusions, or was he? His belief in his delusion was so absolute and his delusion was so vivid and detailed.  His belief was that his wife was having an affair with the doctor and they had colluded to get him committed in the hospital.  He refused to eat the hospital food (which was a sign he was sane) for fear that they would slip medication into it.  He refused to sleep and drank coffee 24/7.  He had to have constant supervision because he was definitely a flight risk.  He tried to escape constantly.  I felt sorry for the doctors, nurses and techs because he refused to cooperate with any of them.  They were the enemy.  His psyche exam was epicly belligerent. He absolutely wanted out of this “prison”.  Through it all, he did have a sense of humor.  He was my roommate for about three weeks.

Day 73- My roommate Chris continued to be high maintenance for the staff.  I warned my family not to stare at him, because he was like a caged animal. I was asked if I wanted to change rooms, but Chris had become a comrade in arms who I would not abandon….The funny thing today was when Hannah, one of my therapists, told me to sit up. Then she kept pushing me and trying to knock me over. I thought she was mad at me. But this was just therapy to build core strength  and balance.

Day 74-The hospital lobbied the insurance company for me to stay, based on my continued improvement.  My insurance company had been very fair and helpful, so I hoped for the best. The criteria was there must be continued improvement for me to stay at a rehabilitation hospital.

Days 75/76 (the weekend).  My mother has flown home for a couple of days to take care of personal business.  My brothers have been taking care of my personal business, such as paying bills, while I was in the hospital.

Day 77- I had the surgery again to remove the scar tissue from the traech.  Everything went well. Again, I couldn’t talk for 24 hours.

Day 78- While breathing was still difficult,  it was better than before.  I could breathe while lying on my back, without feeling like I was going to suffocate.

Chris had some trouble with the security guard last night.  I got my sleeping pill about 9pm and that knocked me out.  Apparently the security guard held Chris down while they force fed him his meds. Chris claims they messed up his shoulder and he was livid.

Day 79- My mother returned from Wisconsin and all is well.

Day 80- I got my traech removed in my room.  The doctor unscrewed some parts, pulled out the tube and put on a band aid.  It was pretty easy.  I was told it would heal up in a week or two.  From here, I would breathe through my nose and mouth, and talk using MY vocal cords.  It was another big milestone.

Day 81-  I had therapy with Hannah and her technician, and Lafayette.  Lafayette skipped lunch and stayed around to help. I took my first steps between the side bars.  It wasn’t many steps, and it wasn’t pretty, and it was very difficult.  But it was a major accomplishment and another huge  milestone.

Days 82-83. A ‘normal’ weekend. My fingernails and toenails are getting long, like Howard Hughes.  I need a pedicure.

Day 84. Today was a field trip to an Astro’s game.   Heather, my nurse wrote GO ASTROS over my traech band aid.  The trip was fun. We had good seats and the Astros won.  We started a two game winning streak which was unusual for 2013.  Pushing my wheel chair around Minute Maid Park was hard work.

Day 85- In occupational therapy, I was wired up.  An electrical charge was sent to a sticky pad applied to my skin over a muscle that was intended to be stimulated.  In my case, it was the right arm. It was hooked up to a controller that sent electricity via wires to the sticky pad to cause my muscles to fire. I was pedaling an arm bike. The amperage was adjusted to an intense but not painful level.  It was very high tech.

Later, in an attempt to loosen up my shoulder, I was given a cortisone shot in my shoulder socket.

Day 86- I got the band aid removed from my traech.  It had healed over pretty good.  There was a hole, but it was healed over.

Chris seemed to be getting better. He apolagized to a nurse. His first signof empathy and respect.  He still won’t eat hospital food or meds. His family brings in food when they visit.

Day 87- I had another swallow test today. I did better than last time, but I still failed.

I got a green armband today, which allows me to leave the 6th floor, unsupervised.  From now on, I am supposed to get myself to therapy on my own.  Nobody will come to pick me up.  I have to push myself to the elevator, then therapy, and back. I took a couple of steps in therapy using the sidebars.

Day 88- I dealt cards today in Occupational Therapy.  Texas Hold Em.

One of the patients was an older Italian gentleman who had suffered a major stroke.  He had an entourage with him.  A therapist, a nurse, a young wife 30 years younger than he, an infant, and a nanny.  The rumor was that he was a retired boxer, who owned a vineyard.  Obviously wealthy.

Days 89/90- Another typical weekend.  My mom drops by everyday. It is pretty quiet.  My roommate’s family visits him a couple times everyday.  They’re getting him ready for discharge in the near future.

Day 91- My meals are now chopped instead of pureed.  And I feed myself .

In physical therapy, I was walking with assistance using  a high walker. The routine was, I got help to stand up and support myself on my elbows on the walker which had wheels.Emma scooted along on my right side in a rolling chair and moved my right foot as we went. A technician followed behind me with a wheel chair for when I needed to rest.  I was building my strength.

Day 92- I did 120 steps in the high walker. A new record everyday. Some days I felt too tired, but those were often the best days.  This was one of those days.

I had a treat today.  One of the nurses brought in chopped BBQ and strawberries with whipped cream. What a great break from hospital meatloaf and canned green beans.

Day 93- I usually had two 30 minute speech sessions per day.  One of them involved eating my lunch with supervision. The other involved breathing exercises to build my lung capacity.  Occupational therapy continued with arm and hand exercises, especially on my right side, raising my arm higher and increasing my range of motion. Physical therapy focused on walking.  Emma had an intern from Boston. She was great. And very pretty.  There are a lot of pretty therapists here.

Day 94- There was a meeting with my doctor today about where my next facility will be.  The goal of my mother and I was that the next facility had a good therapy program.

My old roommate, Chris moved out today.  He was one happy cowboy. He was much improved and the paranoia was gone. He left with his family.  The floor nurses and techs had a big graduation ceremony where they sang and danced on the way to the elevator.

Day 95- I am to the point in my recovery that when I return to my room at the end of the day, I did the transfer from my wheelchair to the bed, using the transfer board with supervision.

Day 96/97-  My brother, Kevin and his wife, Sue came from Wisconsin to visit and vacation for a couple days. It was good that my mom had someone to visit with.

Day 98- I got a new roommate.  He had a stroke on the golf course.  He was proud that he finished the round before going to the hospital. Not a good idea.

Day 99-  I got another swallow test.  I finally passed.  Another milestone.  I was qualified to eat real food, though it was hospital food. The representative from the therapy facility came by for my evaluation.  The dog and pony show went well.  My mother and I were hopeful.

Day 100- Wow, 100 days.  what a long and strange trip it has been.

Day 101- I had a couple of weird symptoms from my stroke. I could inhale through my nostrils, but I could not exhale through them.  If I kept my mouth shut while exhaling, my cheeks would puff up like  a chipmunk rather than air exiting through my nostrils. Another weird symptom was my right eye did not completely close, even during sleep. I was like a cat, except my eye dried out when I slept. …My golfer roommate checked out.  My next roommate was a salesman who loved hot dogs.

Day 102-  We went on a field trip to a great cajun restaurant. I had crawfish ettouffe over mashed potatoes (not rice). The food was delicious, spicy and rich.We had a big group: 5 therapists, 5 technicians, and 5 patients.  A fun time was had by all.  Later, after going to sleep, I woke with an odd feeling in my diaper. My stomach didn’t adapt to the rich, spicy diet and I had diarrehia.  I felt even more sorry than usual for the technician who changed my diaper.

Day 103- The nurses started giving me mini-enemas every night.  They put a suppository in my bunghole every night. Fifteen minutes later, a bowel movement occurred.  Not a big one, and it is usually mostly water.  They were trying to get my bowels regular.  This was a constant hassle in the hospital. They were always tracking bowel movements.

Day 104-  My mother and I went to the chapel.  It was done by a local church, a different one every week. It was always uplifting.

Day 105- I was turned down for my Austin rehabilitation facility by the insurance company.  I was surprised and disappointed.  The list the insurance company provided upset my mother. They were mainly nursing homes.  My mother had done volunteer work at one, and she felt it was too easy to fall through the cracks, and they were understaffed. We were back to square one.

Day 106- There was a patient here whose name was John. He had attempted suicide.  The top of his head had been repaired from the bullet exploding through his skull.  It was hard to believe he had survived and was coherent in thought. He had a good attitude and thanked God  him being alive.

Day 107-  My doctor had a brainstorm.  She had a friend in Austin who was in spinal rehab, which is similar to stroke rehab.  She was going to recommend to the insurance company that I transfer there. …Emma tried a new exercise  to break up the routine.  She brought a big, bouncy ball for me to sit and balance on.  All in all, it was humorous.

Day 108-  The nsurance company had been pestering me for a signature. I had been signing with an ‘X’. I told my mother I would try to sign my name with my right hand, but it was a waste of time.  I tried and it actually went pretty well. My brain had remembered the motion of signing my name.  It wasn’t great but it was legible. I was surprised and my mother was thrilled. Another milestone.

Day 109- I had my first day on the treadmill. I was suspended on a harness to prevent a fall. and to bear my weight.  It felt weird but good to be psedo-walking.

Days 110/111- a typical quiet weekend.

Day 112- I found out that the insurance company had approved me for the hospital in Austin. My mother and I were elated. I leave in a couple days. Wow.

Day 113- They weighed me today.  I have lost 50 pounds.  I would not recommend this diet program to anyone…..Therapy continues on schedule. I still had trouble drinking water because it routinely ‘went down the wrong tube’. So it was decided to leave my feeding tube in, for a while.

Day 114-  My mom started packing and preparing for the move to Austin.  Kevin flies in tomorrow to help with the move.  A special thanks to my mom.  She has been here to help everyday. She has been dealing with insurance, getting ready for the move, financial matters, and even doing my laundry. And to my brother Kevin, who has been paying my bills, and whatever else that needed to be done. …I am saying my goodbyes. It was still hard to believe I was leaving….In physical therapy, we did a trial run to transfer me into an automobile. I was too tall to fit into the car. bummer.

STATUS CHECK. I am still in a wheel chair.  My left arm and leg do all the work to push the chair. My right arm and leg just try to stay out of the way. Some ramps in the hospital are like mountain passes to me.  I still can not get up from a chair or my wheel chair on my own. When I am using the high walker, my right knee will buckle and my right foot drags. I am still transferred to and from my wheel chair.  I still wear diapers. My swallowing is weak to a degree that I drink thickened liquids and my food is chopped up. My voice is weak and slurred.  My lungs are weak. My right arm and leg are very weak.  My left side, though much stronger than my right side, is weak. But my spirit is strong.

Day 115-  I am going to Austin in a Yellow Cab, outfitted to carry a wheel chair. We are leaving tomorrow. I have been here for ten and a half weeks.  It is holy ground to me.  Thanks to my doctor, my primary therapists (Emma, Jamie, & Victor), my #1 nurse, Heather, and my#1 nurse’s assistants ( Martha & Ucha), and the entire hospital staff, except the cooks.  Thanks to, in no particular order or occupation  :Sue, Deanna, Susan, Big Mama, LaFayette, Jessie, Hannah, Angie, Alan, Tomas, Melissa, Bennett, Linda, Matt, Sam, Glen, michelle, Tiffany, Felicity, Jamal, Lavar, and those whose names I have forgotten, or never knew. And of course to my incredible family.  To all the friends who stopped by to visit. To all the people who prayed for my recovery.  And to my insurance company.







Return to Austin

DAY 116, June 21.  It was time to progress to the next phase of my recovery.  It was time to leave Houston and return to Austin. My day started with my usual routine while mom and Kevin finished packing.  They had already finished packing up their apartment.  I said my good byes to the doctors, therapists, nurses and assistants. The staff had autographed a tee shirt for me.  I prepared for my 150 mile cab ride to Austin.  I did my transfer to my wheel chair, and the staff sang and danced in a parade to the elevator.  Heart-felt thanks and good luck salutations were exchanged, and off I went, pushed by Martha and accompanied by mom and Kevin.  I was loaded in the back of a mini van, which was designed to carry a wheel chair.  Mom sat in the passenger seat and Kevin followed in my old van to complete our convoy. I felt like cargo strapped down in the back of the van. Mom and the cab driver hit it off and had a great conversation. I watched the landscape as it flew by.  I had driven this route many times.  After a three hour drive, we found our way to the hospital.  I checked into my private room, which was rumored to have the biggest TV on the fourth floor.   We unpacked and I settled into my new digs.  It was a nice room.  Mom and Kevin eventually left and went to a near by hotel.

Day 117- Mom and Kevin left for the long drive back to Wisconsin. I was on my own.  I can’t thank them enough for all they have done.  They both put their lives on hold to help me to recover.  The definition of family.

The epic event of the day was my first real bowel movement (without an enema).  All those mini-enemas came home to roost, with a vengeance.  I filled my diaper with what felt like a big mud pie. It happened just before my therapist showed up, so I was mortified that he had to clean it up.  But from that point forward, I had regular bowel movements.  So it was another milestone, though a messy one.

Day 118- Today’s therapy was bathroom training. The usual toilet is like a low chair. The problem is that it is too low.  It is impossible to get up, because my legs were too weak. The solution was to have an elevated seat mounted over the toilet bowl.  I successfully used the toilet. Ker-plunk. Another milestone.

My mother and Kevin arrived home safely.  Hurray.

Day 119-  Evaluation Day.  I met my doctor and therapists. Again, I had hit the jackpot. They all turned out to be exceptional….My room was near the nurses’ station, and close to the lunch room and therapy. My nurse was Vlady, complete with a Russian accent and the tech was Jack, a bear of a man with a heart of gold…. I still used a wheel chair. And when I was in bed, there was an alarm that sounded, to warn the nurse that I had left the bed without assistance.

Day 120- Therapy started full speed.  In physical therapy, my therapist was Don.  I started immediately on the treadmill. Again, I had a harness to help support a percentage of my weight and to catch me, if I fell. In occupational therapy, I worked with Mel(issa).  We started on the hand bike, which had pedals like a bike, but for the arms.  In speech therapy, I worked with Kirsten. We worked on facial exercises.

Day 123-  Today, I walked alone using the walker. Another huge milestone. My independence day approached.

Day 124- The food was great. I loved the salmon and mashed potatoes. Eating was a pleasure. I ate salmon every day!

July 2013- My morning routine was different, yet similar.  I was awakened for vitals.  I would swallow my pills instead of having them ground up and washed down my feeding tube. I was not getting my anti-clot shot in my hip anymore.  Breakfast would be served in bed.  Then I would transfer myself with assistance into my wheel chair.  This was done by adjusting the bed height so I could sit up, hold onto the handrails and stand up, then pivot into the wheel chair.  I would then wheel myself to the wash basin to brush my teeth and wash off my face, and comb my hair.  Then I would check the schedule for my therapy times.  It was much simpler than before.

I wasn’t using my feeding tube for water intake.  It was there as a back-up plan just in case.  I was drinking thickened  liquids with my meals.  Eventually my feeding tube was removed.  The way the tube was removed was pretty low tech.  The doctor came in and firmly gripped the tube and pulled on it until it popped out.  It was kind of like a tug of war.  There was a ball attached to the tube just inside the stomach. This served as a gasket and a mechanism to hold the tube in place.  There was no blood.  A band aid was placed over the hole.  It was over in minutes.  Another milestone.

I did a field trip for Mel(issa).  I was to demonstrate a product for a class of therapists in South Austin.  I told them I would work for BBQ. We traveled in a Yellow Cab outfitted for wheel chairs. I demonstrated a product that attached to my right hand that was designed to help a handicapped person pick up objects with more ease.  All went well and I got my BBQ.

In therapy, the trend is your friend.  The goal was for continued improvement.  The good days kept getting better and the bad days, less bad. Sometimes the greatest strides happened on a day where you just felt tired.  Work Hard, Never Quit, and take it one day at a time.

One of my personal favorite milestones was the day I quit wearing diapers.  I was having regular bowel movements and I could hold the urge long enough, to get to the toilet.  The same was true for my bladder.  The day I converted to boxer shorts was AWESOME!  And being able to wipe your own butt was something we take for granted.

My toe nails had grown long and gnarly.  And my left big toe hurt due to an ingrown toe nail.  A foot doctor came by and did a bedside procedure to trim the ingrown toe nail.  As he cut, he asked, “Does this hurt?”. I replied no and he responded, “It should”. I had lost some sensation in my feet due to the stroke.  He bandaged me up and I eventually ate lunch in the community lunch room.  As I sat there eating my salmon and mashed potatoes, a good samaratin approached and stated ” Not top alarm you, but you are bleeding”, which is a sure fire way to alarm someone. It turned out the toenail surgery plus my blood thinner medication, had caused me to bleed through my bandage.  There was a puddle of blood under me.  I was wheeled back to my room and Vlady changed my bandage.

Therapy continued daily. Physical therapy involved longer walks with the walker and exercises using the horizontal bars.  My right knee still tended to buckle, but it was getting better. Occupational therapy involved building strength and dexterity in my hands and strength, endurance and range of motion in my arms. Personal hygiene was also monitored. Did I shave good? etc. I was to the point that I could shower and wash myself, and dress and undress with assistance.  Speech therapy involved facial exercises and conversation. I was still having trouble swallowing water without coughing, so I still drank thickened liquids.  I would take a bite, chew, swallow, and then take a drink to wash it down.  My swallowing was still weak.

Mom and Dad visited.  They came to prepare my house to move back into.  They also stocked it with food and supplies such as toilet paper.  My dad installed an elevated toilet seat that I ordered over the internet. And they removed potential hazards that might cause a fall such as rugs.  And my mom cleaned the house.  Thanks Mom and Dad! They headed home to Wisconsin on July 25.

For socializing, there would be games held on the third floor every week.  I would push myself in my wheelchair to the elevator and downstairs.  There were games of chance such as crazy eights and bingo.  And there were small prizes. Patients and their families were invited.  My favorite prize was a ‘murse’ which I won in a wicked game of crazy eights with an eight year old. I used it as an ID badge and money holder which I hung from my neck.  I continued to use it after my discharge.

To develop more independence, I was also doing my own laundry.  This was also on the third floor, so I would take my laundry down there twice a week.  I was also taken to a mock bathroom to practice getting into and out of a bathtub.

I had received a mechanical chicken that played the Chicken Dance.  It was a joke gift that brought a smile to my face.  I loaned it to one of the therapists so she could practice for her wedding reception.

Thanks to my fantastic doctors, nurses, therapists and everyone else who has helped in my continuing recovery.  My run of good luck continues.

Going Home: August 2, 2013

DAY 158: AUGUST 2, 2013.  My personal Independence Day.

STATUS CHECK: I had a wheel chair but I used a walker to get around. All the paraphenalia from my stroke (traech, feeding tube, pic line) was gone.  I was on a blood thinner and a statin.  I was weakened with poor balance but I was independent. Hallelujah.

I was going home. I couldn’t wait. I was so excited.  Paperwork, good byes, and waiting.  Finally the hospital released me and I was free.  My best friend Mike drove me home. It felt surreal as I entered the blistering Texas heat and got into Mike’s truck; not in a wheel chair, but sitting in the car seat. I was ready to start the next chapter in my life. When I got home, it felt surreal, but familiar and comforting.

I was living alone for the first time in five months, which presented new challenges.  I had to be responsible for taking care of myself. If I fell, I had to get back up on my own. I had to make my own meals, shop for groceries, feed myself, arrange transportation, etc…With independence came work and responsibility.

I got around the house using my walker.  I zip-tied a chair to the side of my bed, to give me something to hold onto when I pulled myself upright in bed.  Then I would stand upright and get my walker.  And of to the bathroom, I went. I had ordered an elevated toilet sheet, since getting out of a low toilet seat was problematic.  I then brushed my teeth and washed up.  Then I would make a phone call to my parents at 7:30, a ritual i continue to this day.  Originally this was a means to signal to my parents that I was okay.  That I hadn’t fallen and injured myself.  So the phone call was a signal that all was well.  For breakfast, I would have something simple like yogurt and applesauce. Then I would feed the local tribe of feral cats.  That was the start to my day.

The next order of business was to tackle my medical bills.  Thankfully my insurance company was great, but I still had to deal with a lot of bills. This involved lots of phone calls. My voice was weak and a little garbled, so talking over the phone required extra effort and patience.  It was generally frustrating and thank God I could refer them to my insurance company if there were any disagreements. I would only do two calls a day because they were usually an emotional and physical drain.

I had my first fall at home.  I was opening the door and it was stuck.  I gave it a tug and I lost my balance.  Down I went.  Fortunately, it was onto some empty cardboard boxes which softened my fall.  I was alone and as I laid there, I thought “This is the test. Can I get back up?”  After much effort, I was able to roll myself over onto my stomach and maneuver myself back up onto my feet.  Well that was a close call, but I survived without injury.

I began my outpatient rehabilitation at Hospital C.  I did it three days a week.  I would take a cab.  I would have one hour each of physical, occupational, and speech therapy. My therapists continued to be great. I was truly blessed.  My occupational therapist was Nancy.  Her focus was to work on my right shoulder and get it limber again.  My physical therapist was Michael.  He focused on general strengthening, stamina and balance.  John was my speech therapist, where the focus was getting my voice stronger and clearer.  As time went on, I continued to get stronger and more flexible with more stamina and better balance.

I went for daily walks with my walker.  I purchased a new type of walker.  It had four wheels and a seat to sit on when I got tired.  It was more manueverable and using it felt more like walking.  I would try to go for a half hour walk every morning.  A couple times a week, I would go for a hour long walk to increase my stamina.

The one thing about my house that concerned me was that there was no handrail on the front porch.  I was afraid I would lose my balance coming down the steps and injure myself from the fall.  My friends, Eric, Mike and John installed one for me.

I won my Rotiserrie Baseball league.  Sweet!  The Spencer Park Howlers are champs.  It went down to the last day, but the Howlers won by a nose.

Originally I was taking a cab to therapy, but I was able to get into a handicapped transportation service provided by the city of Austin.  it was a Godsend.  Originally I went in a wheelchair on the bus, But I evolved into using my walker to get to van. I would use the service to go to therapy 3 times a week, get groceries, do laundry, doctor appointments, etc. It saved me so much money over cabs.  Thank you Austin.

My second fall was more serious.  I was was getting ready to go to bed and I kicked off my sweat pants while standing and lost my balance. Down I tumbled with a thud.  Nothing broke my fall this time.  I struggled to regain my footing and eventually tumbled into bed, exhausted.  This resulted in bruises that looked like angry thunderstorms on my butt and side.

I graduated from speech therapy first.  It was decided that I had progressed to the point that I could continue my therapy on my own.  Another milestone.  My voice was still weak and I had trouble enuciateing some words, but I could be heard and understood  from 20 feet in a somewhat crowded room.

I continued on with my physical and occupational therapy.  After therapy, I would be exhausted.  One of the goals of a therapist is to push you to your limits.  So by the end of the day, I would drag myself to my ride.  All this physical exertion would make me very tired and sleepy.  When I got home, I would take a nap. It was being an infant, requiring lots of naps.

One of the things I did at therapy was biofeedback. Bob was the therapist.  He hooked me up with electrodes.  Then I would do simple exercises and the electrical activity in my arms or legs were measured.  The strength of the signal increased slowly but surely over time.

As time went on, I would walk without a walker.  A belt was attached around my torso by the therapist to help the therapist support me in case I lost my balance.  I walked straight legged and a little wobbley, but I walked.  Eventually I went outside to walk on uneven ground.

One of the lingering problems has been ’empathetic’ crying.  I used to lean toward stoicism, but now I had lost a lot of control of my emotions.  Even romantic comedies or songs could reduce me to tears. I could also get very agitated in conflicts.  My voice would rise to a peculiar pitch. But conflicts were rare, except when I dealt with bill collectors.

My third fall was my worst.  I was using my four wheeled walker  for my morning walk.  My front wheels hit a crack in the road, which caused them to pivot and stop abruptly.  My momentum carried me  over the handlebars onto the street.  I scrambled up to my feet as fast as I could and got off the road. I thought I had broken my wrist, but it was just sprained.  I was more careful after that.

Therapy carried on with the difficulty of the routines ramping up.  By the end of the session I was exhausted. Physical Therapy focused on walking, balance, stamina and strength.  Occupational Therapy worked on the dexterity of fingers and hands and flexibility.  I was also getting driving instructions from Bob.  It felt weird to drive again, especially in Austin’s hectic and stressful traffic.

One of the adjustments to my new life was the change of my social life.  I was not married and my family lived in Wisconsin.  Ninety per cent of my socializing was in the workplace.  Therapy had replaced my workplace. And now that I was back home, I spent a lot of time alone.  Loneliness is a common problem with stroke victims.

As days turned to weeks, and weeks to months, my out-patient days drew to a close.  I was given tests to verify my progress and good-byes and well wishes were exchanged.  My thanks to Michael, Nancy, Ronnie, Casey, John, Bob and Bob.  It takes a village and they were my village.  I felt like I was 60% recovered, which was fantastic. It is hard to put a percentage on recovery because there are so many components.

I would do therapy on my own (cardio and stretching everyday and engage in conversation as often as possible).  I am independent, happy and free. And grateful. I left out-patient on January 17, 2014.  My doctors tell me I am a miracle.


Lessons learned

Further was the name of my old walking stick.. “Further” was written on the top with Sharpee. Every time I was getting ready to quit, I would look at the that word and continue on.  “Further”.  That is what I hope to do with these lessons.

LESSON ONE:     We are all mortal.  We will all eventually die. Maybe today? So live your live as a celebration, but with a sense of urgency. Don’t waste time.

LESSON TWO:  Be grateful for what you have. There are always people less fortunate than yourself. Appreciate what life has to offer.

LESSON THREE:  To accomplish something, ; work hard, never quit, and take one day at a time.

LESSON FOUR: Be Forgiving,  Don’t hold a grudge, it only hurts both of you.

LESSON FIVE: Help Others. Giving is living. Charity is the gift that keeps on giving (to the recipient and giver).  Pay forward (your good deed will be like a seed that grows many others).

The Brain and My Stroke

Stroke: impairment caused by a lack of blood flow to the brain

Pilgrim: One who embarks on a quest for some end conceived as sacred

The brain is an organ that is the center of the nervous system.  It is truly a miracle.  It has neurons which have the ability to send signals to target cells located throughout the whole body.  These signals are sent via axons which are fibers which run like superhighways throughout the body.  Axons transmit signals to other neurons by specialized junctions called synapses.

The brain is divided into many compartments, which have evolved through the ages. The base of the brain is the oldest evolutionary part of the brain.  It is involved in basic life support functions.  It is divided into compartments starting with the medulla which regulates involuntary functions such as heart rate, blood pressure and breathing.  As part of the brain stem, it transfers neural signals from the brain to the spinal cord.  The next area is the pons. It serves as the message center between several areas of the brain. It is involved in sleep, breathing, swallowing, bladder function, and equilibrium. The hypothalamus and thalamus are involved in eating, drinking, defecation and some communication between the hemispheres of the brain. Above the brain stem is the cerebellum.  This area modulates the signal coming from other brain regions, involving thought or motor related activities.  It creates a precise and smooth signal for walking, writing, staying balanced, and is learned instead of being built in. For example, the stumbling drunk has impaired his cerebellum with alcohol.  Above the cerebellum is the cerebrum. It is the largest region of the brain and is involved in cognitive thought or shall I say, ‘thinking’.  The brain is also divided into two hemispheres, which are referred to as right and left.  The left hemisphere is related to more logical ‘language’ related thoughts and more specialized specific tasks.  The right brain is related to more big picture ‘thinking’  and is often thought of as artistic and creative thought, and the home of the subconscious.

When a brain has a stroke, blood flow is lost to a portion of the brain.  This can be because of a clot or a hemorrhage.  the severity of the stroke is determined by how much of the brain is involved, and the duration that  blood flow has been lost. This is why getting someone to the hospital immediately is of utmost importance.  If the stroke was  in the cerebrum, memories may be lost. You might not recognize a friend, you may forget how to write, These things will have to be relearned. If you had a stroke in the brain stem, you may lose muscle control, or worse, respiration.  The hemisphere of the brain affected will also affect how the stroke manifests itself.

My stroke was the result of a clot in the pons region of my brain. It resulted in what is called ‘locked in syndrome’, resulting in paralysis below the eyes, where all one can move is the eyes.  The cognitive part of the brain is unaffected, resulting in being fully aware of what is happening, but being locked into a solitary prison. Communication must be accomplished by eye movement.  In a body that no longer responds to wishes or commands.