The Tales of a Stroke Patient

By Joyce Hoffman

“I was up all night reading. I laughed, cried and my heart was touched. My friend recently began to ignore me and doesn’t want me to visit…. Your blog really made me see what a survivor sees and feel what they feel. Because of your willingness to share, I now know that I’m doing the right thing by hanging in there.” —Jada Thompson, a Reader

“Oh Joyce.... Really touched my heart. There are no “happy words” to make this “better”. But you are facing it head-on, win or lose, and that says so much about your character.” —Anna Bofill, IT Professional

“Takes my breath away. Powerful beyond words. Really a gem!” —Judy Freeman, Retired Teacher

You have expanded my knowledge greatly! Keep up the good research and writing! —Laurel Nichols, Cardinal Hill Rehabilitation Hospital

“I was a reporter and I won an AP award [for an] editorial in ‘99.... I’m damaged goods and words fail me, sort of a blank slate.... I keep pluggin’ away, nose in the dictionary and thesaurus, hunting out words. I’m unsinkable.” —Mickie Roller, Stroke Survivor

• Language: English
• Publisher: Xlibris US
• Release date: Sep 26, 2012
• ISBN: 9781479712502

Joyce Hoffman

Joyce Hoffman has worked at the Philadelphia Daily News as a columnist and at KYW-TV as a news writer. She is an author of “Here’s to Your Health: The Sobering Facts about Social Drinking,” a public speaker, and was a professor of English. She was also a corporate and technical trainer, most recently for Cozen O’Connor, an international law firm in Philadelphia. Hoffman is the author of the blog “The Tales of a Stroke Patient,” which she shares with the name of this book. She resides in New Jersey.

Book preview

Copyright © 2012 by Joyce Hoffman.

ISBN:          Softcover                                 978-1-4797-1249-6

                   Ebook                                      978-1-4797-1250-2

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

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Contents

Introduction

The First Precursor: The Pain in My Legs

The Second Precursor: My Blood Thinner Experience

The Third Precursor: An Enormous Headache

The Only Fuzzy Part

The Last Day and the First Day

Annoying Obligatories

The CNA Experience, aka My Stupid Tricks

The Other Two

The Feeding Tube: It Was the New Reality

The Activities Lady

Fail/Pass and the Tuna Sandwich

The OTs and PTs: A Positive Overview

The Speech Therapist, or How I Helped Myself

And Then the Earth Shook

A Shower with a Strange Man: It’s Not What You Think

A Pee-culiar Solution

How I Regained My Speech, Starting With Two Little Words

First Things First: It Was Time to Tell Off a CNA

The Cafeteria: It Was Segregated

The Fall, And I Don’t Mean The Season

The So-Difficult Compression Stockings

The Stroke Support Group: One More Waste of Time

Hydrotherapy: An Experience Worth Repeating

My OCD and My Mother’s Words Collide

The Sub-Acute Facility, aka I Didn’t Ask the Right Questions

WARNING: This Post Contains Language

The Cup of Tea: It Was Like a Metaphor

The Dueling Televisions, aka How I Kept My Sanity… Once Again

What is the Difference between Therapy at Rehab X and Rehab Y? It Was Like a Bright Day and a Pitch-Dark Night

Pat Boone Incarnate and the Mirror

ALERT: A Voyeur in the Nursing Home

The Time I Helped Somebody Else

Medical Marijuana: It Gets So Complicated

Baby Boomer Jokes and the OT: They’re All About Dignity

I Played Hooky from Therapy, aka I Deserved What I Got

What’s Wrong with Some People Who Mis-Practice Healthcare in America? Everything.

Two Recurrent Dreams: The Bite and the White

Rock Beats Ass, aka The Time I Had an Epiphany

I Was Hot-Hottie-Hot in the Nursing Home

The First Phone Call, aka What Should We Do About Outsourcing?

The Top Ten Things You Should Never Say or Do to a Stroke Patient

The Great Escape? It Really Wasn’t.

Something MORE on My Plate: The Mother of all Machines, The Mystifying MRI

Yoo-hoo, Bibs for Everyone

Welcome to Up-Tight America, aka Sex? Not in the Nursing Home—Yet.

Scary Heights, and Manhole Covers, and Big Dogs! Oh, My!

Help! I Want the Real Deal!

Escaping from the Nursing Home—Legitimately

Shoobies and Snowbirds? Uh Oh. I’m Not in Pennsylvania Anymore!

The Big Box

Not For Nothin’, They’re Called Seizures

Expressions My Parents Used to Say and Personal Assistants

Coumadin: Wonder Drug? Rat Poison? Salad Uncertainty? Coumadin Has It All.

Finding Doctors in New Jersey? It’s Totally Possible If You Start at the Beginning.

More Therapy at Home: Part One, aka Some People Stink

More Therapy at Home: Part Two, aka Sponge Baths and Tongue Twisters: How Can One Person Have So Much Fun?

More Therapy at Home: Part Three, aka The Physical Therapist and the Humble Benefit

My Old Kentucky Home (for Now), aka First Impressions Really DO Count

The Amazing Doctors from Kentucky, aka Thank Goodness I’m Not in New Jersey

My Clinical Trial, aka What Really Went On in Kentucky

If I Knew… .

The Joys of Shopping, aka Watch Out! There’s Another Rack!

Can I Be an Independent Woman Again, Just for a Little Bit?

The Colonoscopy for a Stroke Survivor

Gruesome Depression: Did I or Didn’t I? Do I or Don’t I?

The Motorized Shopping Cart, aka Hell on Wheels

Singin’ in the Rain, aka Questionable Memories

Drinking (Gag, Cough) Water

I Was MAFO’ed

Ten Sayings That No Longer Obsess Me and A Gazillion That Do

The Receptionist and the Doctor: A Team From the Dark Side

A Stroke Patient Joins the Gym

Obedience to Authority: A Twist on the Milgram Experiment

False Facts and a Quiz

Mismatched Signals: Welcome to My World of Jubilance and Tears

UPDATE: Wake Up, Baby Boomers. Your Time May Be Coming Up Sooner Than You Think.

The Chain Reaction, aka Alfred Hitchcock, the Vietnamese, and Me: What’s the Connection?

Stroke Survivorship: A Day in the Life

The Hospital Gown: Misguided and Malfunctioned

The Stroke Claw

Search and Find Mission

Acknowledgments

Dedicated to my sons, Andrew and Jordan, for all your loving support

Introduction

I am a stroke survivor.

I am sitting in the blazing heat of the back room on the first floor, writing the Introduction to my book. I have been here for 6 months, with my right, paralyzed arm sweaty, as it clings to my body, resulting in water that drips if I press the spot. My right arm is useless, though I can feel the wetness as my arm presses against my leg.

I wrote a blog before, and I still do—The Tales of a Stroke Patient—that used to act as a catharsis for the pain. Though I didn’t like to admit it, the individual posts somehow made me feel better, telling all the things that happened after my stroke. But right around the tenth post, I decided that the posts would help other people, not only me. Even though every type of stroke is different, like snowflakes, we strokers are as one. My intent is to keep writing the blog for others, to help them re-gain their dignity, self esteem, and empowerment that was lost in the process.

After a month of starting a blog in August 2010, the rest of the world soon joined me. I have over 22,000 people now around the globe—except Antarctica—who join me in reading The Tales of a Stroke Patient. I have taken most of those posts and turned them into a book. The former posts are no longer available, but you may see them in other websites like nursetalksite.com, everydayhealth.com, and plus.google.com. I wrote a Prologue, about my life 61 years before, but I’ve decided to save that writing for another book. But I’ll summarize for you.

I was born in 1948 and I’ve had a very fascinating life—a writer for a couple of newspapers and a television news station, an author, a public speaker, and a corporate and technical trainer for the last twenty years. It all came to a screeching halt when I had my stroke. There I was, and there it went.

But don’t shed a tear for me. Strokes sometimes happen to good people, and I was one of them. If you believe in God, as I do oftentimes, you might think it was His master plan. If you believe in evolution, you might think it was just rotten luck. Whatever.

In the meantime, I hope you learn about strokes from my point of view as the patient, as I type out the chapters, using my left, non-dominant hand, one letter at a time.

The First Precursor: The Pain in My Legs

I can’t really say what happened when I had my stroke on April 8, 2009, because I was unconscious for eight days after. But I can tell you about some events before, like the pain in my legs beginning on March 26, 2009, and my unbearable headache the night before the episode that would change my life forever.

A stroke was the furthest thing from my mind. It was something that happened to other people, meaning not me, which leads me to believe, if I could have a stroke, anybody could have a stroke. I don’t want to scare you, but that’s the reality of strokes. I’ll begin just before events started to become alarming.

It was in late March 2009 when I got into the elevator as I left the law firm in Philadelphia, staggering to my car a half block away from severe pain in my heels, feet and ankles. I was employed at Cozen O’Connor as a Sr. Technical Trainer, and though I didn’t care at all standing on my feet throughout the day, I was so aware of it now.

My home was near Philadelphia, but I had plans with my friend in New Jersey. I had two adult sons, but they were seven hours away, and if I needed any sort of help, I could count on my friend.

When I arrived at my friend’s home, my pain hadn’t subsided and realized if the pain continued Friday, I couldn’t go to work. As much as I loved work, and as busy as I was, I couldn’t tolerate standing any more.

When I woke Friday morning, the pain was not the same. It was worse. Also, I had ear surgery two weeks before, and the doctor put me a round of antibiotic. I called the doctor and he didn’t know how the surgery could cause the pain in my legs, either. So I continued to take the antibiotic.

My friend had to work both Saturday and Sunday and he left at 6:30 am, so I was on my own. I called a friend of ours, an Orthopedic Surgeon, and these were his words to me: If a warm bath doesn’t help and if the pain increases and moves up your leg on Sunday, go to the Emergency Room.

All of the above happened and I was scared. I drove myself to the ER on Sunday. After an ultrasound and blood testing, the ER doctor saw blood clots. My platelets had also dropped dangerously low, unlike the ear surgery two weeks before when my platelets were normal. That was the beginning of the drama and I couldn’t stop it.

The doctor ran my platelets again and I was admitted on March 29, 2009. The antibiotic I took was Avalox, known for giving blood clots to some unfortunate patients. The stroke was 10 days away.

The Second Precursor: My Blood Thinner Experience

I went to the closest hospital on Sunday before noon, and now it was Monday morning, 1:30 am. I was still in the ER. Over thirteen hours later, a room was finally available. The nurse assigned to my care told me the story about her sister who developed a stroke when she was an infant.

I don’t know why she told me that story. It was, after all, the middle of the night, and I was tired. But she was trying to prepare me, and I didn’t get it. A stroke wasn’t in my frame of reference. Not at all.

During the next two days, I was given more blood tests, but the tests were few and far between. So I just rested in the hospital bed watching television. The nurse would come in and ask me if I wanted anything, and I started to feel like I was on vacation. I continued not to get it.

At one point, a hematologist, assigned by the hospital, put me on Lovenox, an injectable blood thinner, for thirty days, at a twice-a-day dose totaling 160 mg, to break up the clots. I received instructions from the nurse on how the needle worked. Also, I was still dangerously low in my platelet count. The doctor thought I needed to address both the clots and low platelets and said to follow up with a hematologist in Philadelphia.

On April 1, 2009, the hospital released me and I drove myself home. On the way, I picked up the Lovenox at the pharmacy. I also stopped for Chinese comfort food as a distraction from the constant pain which was still there. I returned to work the next day.

Over the next two days, I saw an improvement in the pain level (or I wanted to believe the pain was decreased via the power of suggestion). On the afternoon of the second day back at work, I found a hematologist in Philadelphia. When my blood was assessed while I was still in his office, my platelet count was still low, though he agreed with the dose and the length of time for the Lovenox.

I thought to myself, in an optimistic way, the clots would go away, and I had narrowly escaped something that would throw my life is disarray. Besides, this wasn’t a good time to miss work, with events coming up, one after the other. It’s never a good time to miss work when you love it.

But I wouldn’t have the thirty days of Lovenox after all. The stroke was only five days away.

The Third Precursor: An Enormous Headache

I was still thinking, a week later, of the nurse who told me about her infant sister who had a stroke. There was something about that story.

Anyway, I made it through the weekend, continuing with the Lovenox. The headache would come shortly.

It was Monday, April 6, 2009. I worked all day, and Tuesday as well, with some pain still in my legs, training the new people who came to the firm—lawyers, paralegals, secretaries, support staff. I wanted to save my days for a vacation, a vacation that would, in hindsight, never come.

Tuesday evening, when I was ready to leave work, my manager wanted to know if I could stop by and have dinner with the Information Services people from the Applications group who were planning an upgrade. There was so much food, she said. I agreed, but if I knew that the stroke would be ravaging my body in about ten hours, I would probably have elected to go shopping instead. That’s the thing about choices. Sometimes you just don’t know what’s lying ahead.

The party was Mexican fare and I went back for seconds. I felt good hanging out with those people, the camaraderie they provided, and the distraction from the pain in my legs. I was suddenly in no rush to go home, but I had the beginnings of a headache. I could count on one hand how many times I’ve had headaches in the past twenty-five years. And they were all due to sinuses.

I started to wonder. Did I have a good day? Yes, I did. Check! Did I have lunch? Yes. Check! Did I have enough water to drink? Yes, again. Check! I left the office and headed straight for the car.

The headache had grown stronger. I decided to go to my friend’s house in New Jersey. I didn’t know where this headache was going, but if it got worse, at least I would have my friend there to help me. Plus, I would watch American Idol to take my mind off the headache. It was a perfect plan.

My friend retired about 9:30 pm and AI didn’t make my headache go away, not one bit. It got worse. My friend was already asleep, but I woke him anyway. I told him about my headache, and he went and got me Tylenol. Somehow, after awhile, I fell asleep.

And that was all I knew. I went into convulsions about 4:30 am. I missed the paramedics who came to my friend’s house, the hospital—the same hospital where I went for my blood clots, and the helicopter flight to Capital Health in Trenton, known for treating severe neurological problems.

And that’s what I heard next from my oldest son, Andrew: You’ve had a stroke. My son? He was in Pittsburgh. So what was he doing here? I was so confused. And then that quickly, I forgot that thought and fell back into a deep sleep. Sleep was what I wanted even though I had been in a coma for eight days.

The Only Fuzzy Part

I was airlifted from the local hospital that same day to Trenton’s Capital Health, which specialized in treating stroke victims. It was a trauma center, but I didn’t know it at the time. Beyond that, and once I was conscious, I remember someone saying I had a stroke. And then I dozed off again. I don’t remember much while I was at Capital Health, except for what was told to me about the tests I took, how I looked near death, and the visitors I had.

But on my own, I remember three things when I was at Capital Health.

The first thing I remember was my younger son, Jordan, playing the guitar very softly in my private room. I was smiling at him and glad that he brought the guitar all the way from Boston. He was playing some songs I knew and some I didn’t. But I remember that at some point, he stopped. I wanted to stay awake, but I couldn’t. I fell asleep with thoughts of missing his birthday. His birthday was April 17 and it was now, in retrospect, April 18. The older son and I had plans of visiting him in Boston, plans that would never happen on his 28th birthday.

The second thing I remember is both my sons crying. I, too, was crying. But at that point, knowing nothing about strokes, I thought this was a temporary setback, an interruption in my busy life. I didn’t know that my hemorrhagic stroke, or a bleed in the brain caused by a vessel bursting, had gone from 3 cm at the local hospital to 7 cm when it was measured at Capital Health.

And the third thing I remember, when I was awake, is wanting to know more. Ever since the stroke and for my nineteen days at Capital Health, I lost my ability to speak, and it would go on a while longer at the next place I was destined to go. Not being able to speak cut into the core of my being. That’s what I did as a trainer for Cozen O’Connor, the law firm. That’s what I did as a college professor, a public speaker, a television news writer, a newspaper columnist. Did I want a bedpan? Something to read? My glasses?

That third event marked my beginning of a frustration level without boundaries. And the frustration would go on for almost a year and a half. My friend says it is still going on, three years later. That time difference of ours is why I still feel like a patient. Whereas I had, as the saying goes, the patience of a saint before my stroke, I had no patience now. The frustration still lingers today, but I have learned, through self-retraining, to wait.

But I didn’t want to live without speech. I still had an ability to think and pondered ending my life, despite my delusion that someday I would be all better, despite all the drugs that were floating through my body to sedate me. I wondered where Jack Kevorkian was and if he would agree to putting my lights out—permanently. It was odd that I considered Jack, the last thought I had before I went to sleep again.

The Last Day and the First Day

The stroke care at Capital Health, I am told, was excellent, with nurses and doctors coming in regularly, but I missed most of it. The first eight of those days, I was unconscious from my stroke. The rest of the time, I was sleeping on and off because I saw no point in trying to stay awake. I still couldn’t talk at the end of my stay. Nobody could understand me.

However, a shifting of priorities turned my inability to talk into second place. The most dire turn of events, as it turned out, came near the end of my stay when I realized I couldn’t move the right side of my body. I came upon this dismal reality when no one was in the room and I was reaching for something. I don’t remember what it was, but I couldn’t pick it up with my right hand. And after a while, I tried to move my right leg. Same reaction. Nothing.

I was stuck this way forever, I thought, and in the haze that was surrounding me, with the left side of my brain partially gone, I was sure of it.

When anybody has damage to either side of the brain, the opposite side is affected. So right brain damaged, left side affected; left brain damaged, right side affected. It took me less than a minute to realize all the activities I could never do anymore: play piano (I used to play by ear), knit (I only knitted scarves, but even so), cook (what I used to do to relax), open potato chip bags (that was my lunch if I was too busy), read (I was seeing double now after the stroke).

On the day I was going to leave, the nurse moved me down to the first floor from wherever I had been. It was a holding cell—without bars—for those who would be released that day. I heard the nurse say so. She thought I couldn’t understand her and started using her hands in an unnecessary gesticulation. I got it the first time, but I couldn’t convince her otherwise. I started to think of Jack Kevorkian again.

Anyway, when it was time to leave, there were no helium balloons, no warm wishes, no teary goodbyes. The ambulance arrived and two EMT-types efficiently whisked me off to the first day of the second place I would go. The ride was silent since the EMT who was with me in the ambulance knew I couldn’t talk. At least, he could have told me the news, any news which I missed for almost three weeks. But I didn’t think I could express the notion of needing news, and he didn’t think I could understand anything, so he didn’t try. We were at a stand-off.

I’m not going to mention the name of the second place because there were more terrible than fantastic events that happened there, but I will say this: it was an acute rehabilitation hospital. The ambulance arrived at the place which I am calling Rehab X, and I was stuck there with no end in sight.

Annoying Obligatories

They were expecting me and my stroke at Rehab X. They had it perfectly planned. When the ambulance arrived, a cheery woman put me into a wheelchair. I was still wearing my nightgown and I couldn’t push the wheelchair using both hands. I went around in circles using only my left hand. I had no chance for escape. The second I entered, I was incarcerated.

In the lobby, I saw plaques named after some doctors who I imagine were all dead. I didn’t travel far from the front door when I was ushered into a room and met the second woman who was, again, jubilant. She asked me to sign papers. Lots of papers. I didn’t ask about the papers because I couldn’t speak. I just signed sloppily using my left hand, one after the next.

Besides, what was the point of not signing? If I didn’t sign, I was afraid they wouldn’t treat me for the stroke. The time to not sign was not now. I