A Stroke Survivor’s Story Of Struggle And Success!

Hello, my name is Cathy Jenkins.  I am 59 yrs old and I live near Philadelphia, Pennsylvania in the U. S.  When I was 50 yrs and 10 months old, I suffered a massive ischemic stroke.  I was a special education teacher and I worked with mostly autistic and developmentally delayed students in grades kindergarten through 4th grade.  It was an extremely stressful job.  On Tuesday afternoon, March 23, 2004, I came home from work.  I was starving and had just scarfed down a donut on my drive home from work.  As I walked in the back door of my house, I grabbed the mail.  I read an invitation to a wedding coming up in June, so I immediately attempted to write the date in our datebook on the kitchen counter.  As I did this, I began to speak to my husband who was in the adjoining family room.  I leaned on the counter and raised my left leg to rest it on a stool.  As I spoke to him, David said he couldn’t understand what I was saying.  So I turned to face him and realized I couldn’t move my left leg back down to the floor.  As I stuttered and stumbled, I remember thinking, “must be a blood sugar fluctuation from that darn donut.”  I crashed to the floor, still talking (gibberish)our family dog, scurried away from me frightened by something about my strange behavior.
As I lay on the floor having no idea what was going on, my husband began screaming to our daughter Sarah (23) to call 911 and tell the operator her mother is having a stroke.  I could hear the fear in his voice and I remember struggling to tell him not to scare our daughter like that.  I was still convinced that I had passed out due to dropping blood sugar levels.  (I was struggling to understand what was going on and didn’t realize I wasn’t make any sense) I was completely aware of what was happening.

When the paramedics arrived, I was assessed.  My blood pressure was 120/80 which was considered picture perfect for emergency treatment with the “miracle drug” T-pa.  My pulse oxygen level was also determined to be in a positive range.  But I was put on an Oxygen cannula to ensure that it remained that way.  Of course, I was questioned, what is the date, who is the president, what is your birthday, etc.  I was so determined to prove to these people that I was fine, I struggled to stay alert and “with it”   the paramedics asked my husband where he wanted them to take me.  At his response of a local hospital which was not a designated trauma unit, he was told, no, they would transport me to a much larger hospital further away-- because that facility had a neurologist on call and a dedicated CT machine.  So off we went, as we flew down the highway, the medic installed an IV line.  I remember thinking “how can they do this in a moving vehicle?”  My clothes were cut off and discarded.  All the way, I kept chattering like a mad hatter. (I didn’t get my nickname “Magpie” for no reason).

Upon arrival at the hospital, I was immediately evaluated and scanned.  I had a TEE (trans esophageal electrocardiogram) and a Doppler of my carotid arteries.  Every thing was found to be normal but the CT scan showed a huge stroke was occurring in the right hemisphere of my brain.  For the most part, I was conscious the entire time and talking.  I am told this was a very good sign.  My NIHS score was 16/17.  My husband was told I was having a massive stroke.  Under ordinary circumstances, there would have been no treatment for me but for “wait and see” but thank god that T-pa had been released just 10 yrs ago.  My husband was offered the cutting edge treatment and warned that the potential for death was very high with the treatment, but without the treatment, my chances for a recovery to independent living were slim to none.  So he opted for the drug treatment.  He signed the papers and I was given the drug.

Prior to receiving t-pa I was so impaired; I couldn’t move anything on my left side.  When either my arm or leg was lifted to a height and released, it was impossible to hold it up.  It dropped like a rock.  I was so perplexed.  I didn’t understand why, when they asked me to wiggle my left toes, I stared at them and wiggled my right toes.  I was trying to figure out what I did to make my toes, any toes, move.  “No, the doctor corrected me, move your left toes please.”   I was so frustrated.  I also became incontinent, I needed to make a bowel movement and could feel that I needed to control it, but I couldn’t.  This happened numerous times.  I was mortified.  Eventually, I just gave up trying to control anything at all.  I drifted in and out of consciousness.

When asked my weight, I refused to answer.  I knew I was over weight and I was not going to give a guesstimate as to my weight.  My husband would kill me so I argued with the doctor refusing to say.  Of course, they were in a hurry to calculate how to titrate the life saving medication for me, based on my weight.  So they resorted to placing the entire bed on a winch.  Visions of whales swam through my head.  Imagine my upset when my weight was shouted out across the triage room.  I gave that doctor a tongue wagging.  All in gibberish of course.   Long story short, the drug was administered and with in minutes I reported a tingling feeling in my left arm.  The nurse thought I was beginning to have a seizure.  The doctor reassured her it was the drug working.

As it turned out, I was the first patient who had ever successfully received the t-pa treatment at that trauma unit.  So I was an exciting patient for all.  This worked to my disadvantage later in my recovery.  After a couple of days of observation I was transferred to a cardiac unit.  I was followed closely by a cardiologist.  But I was a miracle to everyone, including myself.  The recovery was so dramatic; I was convinced I had been cured.  No mention was ever made of the possibility of any cognitive losses.  I was only aware of my physical limitations which appeared to be healing spontaneously.  I asked a question of the neurologist who had taken over my care when the original neuro had to leave for an extended period of time. I wondered if he would be able to write me out of work.  I did not feel as though I would be able to handle teaching 7 hours a day and wanted medical permission to go out on an extended leave.  The doc’s response set me thinking.  He said “ I’m not writing you out now, that’s six weeks away.  Who knows where you will be in six weeks” I clearly remember thinking that it sounded possible that I would be back to “normal” in less than 6 weeks.

I declared war on stroke.  Just like that.  I began pushing myself to do everything I could in order to “get back to normal”.  I climbed stairs, fed myself, forced myself to take a shower alone.  As soon as I accomplished that task (which took close to 60 min. rather than my pre-stroke time of 8-10 min.) --I was discharged to my home.  It happened so fast, I was in a whirl.  There had been so much talk about me going to a residential rehab facility; I falsely assumed the docs thought I would be back on my feet in no time.  So I kept pushing myself.  I just laughed at things like not being able to tell time.  I brushed it off as sort of funny that I was making phone calls at 5:00 in the morning.  When someone asked me why I was calling people at 5 AM, I asked them what AM meant.  They thought I was pretending.  When I requested some feminine supplies, I was handed some panties and a sanitary napkin.  Not know what to do with it; I stuffed it between my legs.  The nurses and I got a good laugh out of that one.  Clearly I was out of my right mind.  I even swore to my husband that there was a family living outside my hospital window on the roof of the hospital.  I declared that they were using my window as their egress to and from the roof.  Again, I gave every one a real chuckle.  No one had any idea how confused I really was.  There had been such a dramatic improvement in my motor ability, it over shadowed my mental confusion.

So home I went and back to work I attempted to go.  I was able to use my accumulated sick days to work half days through to the end of the year.  The only trouble was that the harder I pushed, the more confused I became.  I was cleared to drive a car and I began experiencing panic attacks while driving.  I was forced to wear ear plugs at recess or lunch duty as the noise of the playground or lunchroom was over stimulating and unbearable.  I had difficulty navigating my way around crowded classrooms, and was often found surfing the Internet while at work.  I had become impulsive and lost all my filters, unable to make wise choices. Emotionally, I began to fall apart.  I began loosing weight and became unable to sleep.  My hair began to fall out.  I was dizzy and unsteady and walked like an old woman.  I was sure I was loosing my mind.

I found friends on line after I joined an on line stroke support group, I began asking questions and was eventually advised to seek out neuropsychological testing. They coached me through how to tell the neurologist about my problems and to specifically ask for neuropsychological testing with a neuropsychologist familiar with stroke or brain injury.   I was lucky enough to be able to have Neuropsychology evaluations done.  The results indicated left neglect as well as a cognitive loss of over 30 IQ points.  I learned that the more intelligent a stroke survivor is the harder their recovery tends to be due to their ability to recognize subtle changes in their psyche.     When I received the results of the evaluation, I was much better able to understand the troubles I was having.

The more I reflected on my progress and initial lack of progress, the more I realized that medical staff had unrealistic expectations for my recovery and that was subconsciously passed along to me.  I didn’t understand how much brain damage I had sustained before I received the T-pa.  Yes, it did stop the stroke in progress, but its use does not diminish any damage already done.  However, as the visible physical results were so dramatic, possible invisible deficits were down-played.  Yet those invisible changes were so profound, they caused me huge amounts of psychological suffering.  My personality was dramatically different and I didn’t understand why I felt so odd.  My affect was flat and my emotions were flat as well.  Even my children didn’t recognize me.  The family dog avoided me.  I thought perhaps I smelled different, not realizing I was such a different person.  The changes confused me.  I thought I was healed, so why was I so depressed?  Initially, when I asked the neurologist who had discharged me about my deepening depression, he referred me to my gynecologist, dismissing my symptoms as menopausal.  I was infuriated!  How dare someone tell me my suicidal thoughts were simply hormonal.  I began to research more and more about depression and stroke.

I also was being seen by a new neurologist at a leading teaching hospital in order to diagnose a possible condition known as fibro muscular dysplasia, which may or may not have contributed to my stroke.  This man was a godsend.  His secretary took pity on me and invited me to a stroke survivor’s support group.  Initially I had turned down such invitations.  I was self conscious about appearing “needy” as I was physically able to walk and talk.  I assumed those were the only deficits one could have as a result of stroke.  Wow, was I wrong.  The group I began attending was founded by a 22 yr old college student who had stroked while an undergraduate at the University of Pennsylvania.  She shared about her depression and suicide attempt.  I met people of all ages and stages of recovery.   I was welcomed warmly and with a lot of empathy.  I realized that many of my more subtle challenges were common for survivors.
Armed with my neuropsychological evaluation results, I sought disability.  Fortunately, I was awarded permanent disability.  This entitled me to receive Medicare through the US government.  I also was approved to retire early from my job as special education teacher, due to disability.  Ultimately, this was the answer and solution I needed.  As I began to rest and relax more and more, gradually many of my symptoms began to heal.  I became less unsteady on my feet.

Beginning within my first year of retirement, I decided to take advantage of my free time to expand my recovery.  I began seeing opportunities to participate in some of my pre stroke activities.  I figured that whatever level I was able to participate, would only serve to aide my recovery.  So I began helping on Sunday school each week.  As a former lead teacher, I had no desire to bear any responsibilities, so I volunteered to be an aide.  I simply attended Sunday school with the nursery school age children each week and assisted the teachers with paperwork and worked with children who needed some help to complete crafts.  I enjoyed it a lot and noticed improvements in my stamina and also in my steadiness.  I became less foggy and confused.

About 2 years into my recovery, my eldest daughter became engaged.  I enjoyed researching wedding preparations on line and helping her find various vendors.  It was a proud day for me when she was married and I was there for her.  My husband and I took a short trip to the beach I enjoyed sight seeing and beach bathing and I also enjoyed my daily afternoon nap.  Within another two years, our second daughter became engaged.  Again, I enjoyed being able to research wedding preparation on line.  As time went on, I also noticed a dramatic increase in my stamina.  I had joined my church’s handbell choir and chancel choir.  Both of these activities involved weekly rehearsals.  I had lost the ability to read music, but forcing myself to keep trying, the skill eventually improved.  As I approached each new activity, I did so with the faith that God had spared me for a reason, and it was not to sit in my house and watch TV.  I constantly sought opportunities to expand my stamina and improve lost and damaged skills.  I was often afraid and nervous that I would fail, but I believed firmly that God wanted me to keep pushing.  I hadn’t died, I had lived, so there had to be something in store for me.  When my daughter had a baby, I thought that was my raison d’etre.  I was wrong.  She lived in another state and I was unable to get to her house often enough to really get to know the child.  And I was nervous.  I hadn’t held an infant since my own children some 25 yrs ago.  My anxiety got in the way for me.  But I kept trying.  I changed diapers and feed her on family vacations together.  I kept trying.  Then miracle of miracles, another granddaughter was born to me.  By a stroke of coincidence, I was in the delivery room with her.  She lived just a mile from us.  I was able to visit her as much as I wanted, and I gained confidence.  When her mommy returned to work, I offered to babysit three days a week to help with daycare costs.  Three days proved too much for me, so I cut back to Mondays and Fridays.  I continue to this day.  The schedule is perfect for me.  I am up early and busy on Mondays, then have the nest three days to rest up.  Then I am busy on Fridays and have the weekends to recover.  This opportunity has afforded me the opportunity to improve my stamina again.  I am able to tell a change in my cognition, my strength and stamina.  It is in short, an answer to prayer.  I consider myself 95 % back to my old normal and satisfied that I may never be 100%.  Strokes can not be cured or reversed as is sometimes stated by professionals.  But death from stroke can be defeated.  T-pa does not reverse stroke damage, it allows for physical recovery, but cognitive losses may still be an issue.  But I am living proof that improvement is possible and likely if a survivor keeps trying.  And making sure to take time to heal and rest.