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Book Club: Using The Portrayal Of Neuroscience Nursing In Contemporary
Non-fiction To Improve PracticeMelissa V Moreda RN BSN CNRN Susan Chioffi RN MSN CCRN ACNP-BC
Flying Lessons
Author: Joan Grady-Fitchett
Perspective: straightforward first person account
Neurologic issue: Parkinson’s disease
Living a life that is not defined solely by a chronic illness
Determined woman with resources searches for best therapies after she is diagnosed with Parkinson’s disease
The doctor who first diagnosed her makes a negative impression
Does not let her diagnosis take over her life
Flying Lessons
Author: Michael J. Fox
Perspective: upbeat straightforward first person account of life with a chronic illness
Neurologic disorder: Parkinson’s disease
Always Looking Up
Second of his memoirs dealing with living with Parkinson’s
Diagnosed very young
Goes into detail about adjusting his medications to account for the “on/off” phenomenon so that he can work and get through a day
Always Looking Up
“…the shuffling, mask-faced Mike Fox that they would encounter…”
His children refer to him being “Shaky Dad”
His celebrity allows him opportunities to speak about PD, to raise money for research into treatments and possible cures that he would not otherwise have
Always Looking Up
Author: Thomas Graboys,MD
Perspective: first person account of life with chronic illness
Disease: Parkinson’s disease and Lewy body dementia
Life in the Balance
Physician who was still in prime career years develops Parkinson’s w/ dementia
Looks at his initial denial that he had a serious illness and need to retire once he was diagnosed
Speaks to both the science and the human side
Life in the Balance
“Nothing is second nature to me any more. No task is too simple, no activity so routine that I can do it without forethought.”
“I lie entombed in my own body for ten or fifteen minutes…..until enough synapses can spring into action to allow me to move.”
Life in the Balance
Describes various symptoms such as visual disturbances, mental lapses, vivid nightmares
Talks about carrying on as best as possible
Very distressed by how difficult PD makes public activities i.e. putting on jacket and freezing up, tremor worse under pressure, feeling like people think he must be drunk because of how he’s walking and moving
Life in the Balance
Double-edged sword of dependence
Hates that people need to do things for him
Life is made easier when family and friends help with/perform some ADLs
Used to reread his CV to bolster his self-esteem
Life in the Balance
Author: Anne Fadiman
Perspective: straightforward third person
Neurologic disorder: Hmong child’s intractable seizure disorder
The Spirit Catches You and You Fall Down
Looks at how cultural misunderstanding “snowballed” disastrously
Author spoke to physicians, not nurses, though the child involved was repeatedly hospitalized
One way to gauge opinion of Hmong: staff feeling about foods brought for hospitalized family
The Spirit Catches You
Author: Sarah Manguso
Perspective: relatively straightforward first person
Neurologic disorder: Chronic Idiopathic Demyelinating Polyneuropathy
The Two Kinds of Decay
Looks back at the several years of intermittent hospitalizations related to her CIDP
Good descriptions of patient’s experience of medical procedures: central line placement, LP, MRI
Mentions 2 favorite nurses:• The pheresis nurse who always brought wintergreen candies to help with
the bad taste from the albumin used for pheresis
• The one who was really good at wiping her butt
The Two Kinds of Decay
“My symptoms were so unlikely, by the book, that despite my reports of them, they were assumed not to exist.”
“An autoimmune disease invokes the metaphor of suicide. The body destroys itself from the inside.”
The Two Kinds of Decay
Author: Monica Rae
Perspective: fictional account
Neurologic disorder: protagonist has Guillain-Barre Syndrome
Thaw
Author is a physical therapist
Captures the roller coaster of emotions, pain, frustration, fatigue, dependence and uncertainty of GBS
Physically disconnected family
Thaw
Author: Sandra Lesher Stuban, RN
Perspective: straightforward first person account of life with chronic degenerative illness
Neurologic disorder: ALS
The Butcher’s Daughter
Determined, quickly advancing 38 y.o. Army nurse develops weakness 3 months postpartum, Worked 2 years after diagnosis
Discussion with Joan, RN “When you lose an ability, you must grieve the loss and then move on”. Life changing
MICU: did not practice primary nursing/continuity of care- not establish rapport, routines, thankful RT did• Why don’t we????
Trach/PEG discussion early on for son’s sake, • questions it 3 months later as completely paralyzed, has lost inner spark
The Butcher’s Daughter
Joan- home nurse educator for Home Based Primary Care- provided info and resources to keep her independence
Caregivers:• Learned patience, tolerance, acceptance, gratitude, appreciation and recognition of every
small act of kindness that she used to take for granted• 3 categories:
− 1. light/feather touch− 2. normal touch ( MOST)− 3. heavy/rough- are they this way with themselves?
– leave a profound impact and long lasting impression
The Butcher’s Daughter
Joined online ALS support group, realized that she had much to offer “nurse in me came alive again”
Served on the board of Sigma Theta Tau, 4 years, most members never knew she was a vent-dependent quad, published multiple times
Secret of her Success:• Hired caregivers• Became computer savvy, online chats, resources • Had necessary equipment• Maintained high standards
The Butcher’s Daughter
The Butcher’s Daughter Hi Melissa, Thank you for your kind note. I'm glad you found my book useful. That was
my whole purpose, to use myself as an example to benefit others. Good luck and take care, Sandy Stuban
The Diving Bell and the Butterfly Author: Jean-Dominique Bauby
Perspective: dictated first person account
Neurologic disorder: locked-in syndrome following a stroke
Intense Sensory Input: bath, the pier, repositioning, noise Lucky Day:
• tube machine beeping ½ hr- inane nerve wracking Beep, Beep, Beep• sweat unglued tape that keeps eyelid together, stuck eyelashes tickling his pupil
unbearably.• Urinary cath detached, drenched• Hums while awaiting rescue…The Nurse arrives, turns the TV on
Vivid Descriptions of Fantastic Memories
Nursing: gloomy lethargy of Sat night drinking coupled with regret of missing the family picnic.
The Diving Bell and the Butterfly
Nursing: 2 kinds• 1. The Majority: not dream of leaving the room without 1st attempting to
decipher his SOS messages• 2.The Minority: takes their getaway pretending not to notice his distress
signals
Shaving event, every time he thinks of his labor of love for his dad on their last gathering before both becoming locked in (him with his stroke, dad 92 yo not able to come out of apt.)
Nicknames for Nurses: Blue Eyes, Big Bird, Elvis, David Bowie, Rambo, Terminator
Mid-dream: Flashlight full on face, “You want your sleeping pill now or shall I come back in an hour?”
.
The Diving Bell and the Butterfly
At first, nurses seen as jailers, accomplices in some awful plot. Would cheerfully have killed them.
As time went on, he got to know them better.
They carried out as best as they could their delicate mission: • to ease our burden a little when our crosses bruised our shoulders too
painfully.
The Diving Bell and the Butterfly
Author: Jill Bolte Taylor
Perspective: straightforward first person
Neurologic disorder: Left MCA AVM rupture
My Stroke of Insight
Author is a neuroanatomist
“Having stroke, panic, next moment “Wow, this is cool”
Confrontation with inner commanding voice to “GET UP”!!!, hard to concentrate, euphoria
“Answer this, squeeze that, sign here” SLOW DOWN!!!! I can’t understand you! Be Patient!! I am in here, please come find me!!• Grateful to medical professionals who stabilized and gave another
chance of life− HOB elevated- “thanks, I could not determine body position, where it
began and where it ended, I was one with the universe”
My Stroke of Insight
Packages of Energy• Dr/Nurses “massive conglomerations of powerful beams of NRG that came/went”
• Attentive RN-Made eye contact, Naturally felt safe, provided healing space
• Other RN- no eye contact, brought tray with jello and milk, neglected that she could not open the food she desperately wanted to consume
− OBLIVIOUS to her needs, raised voice when spoke not realizing that she wasn’t deaf. Lack of willingness to connect. SCARED Jill. Did not feel safe
My Stroke of Insight
Senses• Inability to make sense of sound, all is chaos/noise• Inability to see 3D, color, not distinguish clear boundaries• Smell: overwhelming, amplified• Sensation: unable to perceive temp, vibration, pain, proprioception• light= uncomfortable, pen light caused brain throbbing in agony• Words, no meaning, focused on nonverbal: facial expressions, voice
tones, how they held bodies as exchanged information
My Stroke of Insight
Saddened by the medical community not knowing how to communicate with someone in her condition• #1 Disabler in US• 4x mores strokes in L hemisphere• Wanted focus on how her brain was working, rather than their
criteria/timetable
Forty things I Needed the Most
My Stroke of Insight
Author: Kirk Douglas
Perspective: straightforward first person
Neurologic disorder: ischemic stroke
My Stroke of Luck
“Only a small stroke” (expressive aphasia, facial weakness, slurred speech, R side weakness)
Tired, home hospital bed = cocoon
Depressed, contemplates suicide, searches for happy memories • Inspired by others with disabilities helping others• Jim MacClaren: stronger with adversity
Surprised by the amount of time of recovery, how do people actually learn English?
Well meaning sympathy can be tempting, but turns you dependent and an invalid
Operator’s Manual
My Stroke of Luck
Author: Robert McCrum
Perspective: first person account
Disorder: stroke (MCA/BG)
My Year Off
Previously healthy man in his early 40s has a stroke
“For some unknown reason, I experienced no anxiety about my condition, just irritation and puzzlement.”
“ I had no inkling of how ruthlessly I had been disconnected from the
world of appointments and obligations.”
My Year Off
The doctors refer to his stroke as a cerebral insult: “ I could not prevent myself imagining rogue neurons viciously hissing ‘Your mother is a water buffalo” to my sensitive cortex.”
“Every few hours a team of three nurses would turn me over in bed, as if I were a slow-cooking roast.”
My Year Off
Uses excerpts from journals both he and his wife kept
Also includes information about stroke and its underlying causes while doctors try to determine the cause of his
Wrote book because much of what he could find was about much older people and he thought that there were different concerns in people his age
My Year Off
Remembers the kindnesses of various nurses
Talks about no one seemed to understand how very exhausting it was in the early months
Talks about how unpleasant it was to need help with toileting “How low and helpless can one become.”
My Year Off
Author: Alix Kates Shulman
Perspective: straightforward second person account about her husband
Neurologic disorder: traumatic brain injury
To Love What Is
Protecting her husband early in the course of his injury from falls. “Except for the lowly aide, who lacks authority, not one person on the floor was aware that Scott needed guarding. And not one person besides me seems distressed about it. Each one blames someone else.”
To Love What Is
“ The terrifying sundowning that overcomes him when dusk descends, as if he’d been bitten by a vampire, leaving him plagued by hallucinations and madness.”
Looks at ups and downs of both caregiver and person with TBI in first year after injury.
To Love What Is
Author: Abigail Thomas
Perspective: straightforward second person account about a relative
Neurologic disorder: husband’s traumatic brain injury
A Three Dog Life
“But in the days following the surgery Rich enters the stage known as “Inappropriate Behavior.” This is euphemistic for the anger and irrationality that is part of the process of recovery.”
“They tell us again there will be differences in Rich’s personality….I have never processed this information.”
“He is there, and not there”
A Three Dog Life
He cannot be cared for at home because of his memory issues and behavioral problems
Nurses at various times gently help her with the new reality of her life
“ I took this to mean that in the nicest way possible I was being told to Get a Life.”
“I kept forgetting that I actually couldn’t take care of him.”
A Three Dog Life
Where is the Mango Princess? Author: Cathy Crimmins
Perspective: lightly humorous second person account about a relative
Neurologic disorder: husband’s traumatic brain injury
Boating accident occurs
How, after finding out how difficult it is to get treatment for a brain injury through most HMO insurance plans
“Coma, it turns out, is not the worst thing in the world.”
Vivid descriptive account of TBI hell, emergence from coma, escalating up Rancho Los Amigos scale
Frustrations with family dynamic changes
Humor
Where is the Mango Princess
Maureen RN:• Coma: Is wading out of deep water, 1st the tip of your head. Then other
features then come out slowly, slowly out with great difficulty as the water is heavy and is hard to get out.
• Pay attention to your daughter now, as you can’t do anything for your husband at this point.
Authors: Lee and Bob Woodruff
Perspectives: straightforward second and first person account about his injury
Neurologic disorder: his work-related traumatic brain injury
In an Instant
Chronicles Bob’s and Lee’s life, adventure throughout his amazing peak performance as a journalist and Iraqi war coverage resulting in TBI
“The walking wounded”, signature wound of this war, Bob the typical patient
In an Instant
Nursing:• preparing wife for what to visibly see upon first visit, very calm, knowledgeable,
immediately trusted her.
• presence in family intimacy: daughter’s kissing game, holding sedation for better exam, “I love you”
• really marked Bob’s progress. “ I really loved these nurses.”
• Preparation of what’s to come: Vivid descriptions of coma emergence
• Creative solutions for dealing with her husband
In an Instant
Multiple, complicated surgeries
Extreme gratitude for nursing/medical staff
“It’s a long road”, “The brain is like a computer rebooting”, “It’s not a sprint, but a marathon”
Coping with brain injury emergence: bed, walking around the unit, aphasia
Bob’s first memory: • waking up with excruciating pain”as if skull were to split open if I moved
too much”, lasted until skull fixed, 4 months later
• Bob being frightened of the dark, nurses being present
In an Instant
Lee balancing new roles of single mom, spouse uncertainty, caregiver, family dynamic changes, the struggle to be with husband and kids, healthcare facility evaluator, financial planner • Amazed, even with having great medical insurance, the headaches that
go along with managed care, especially in wake of TBI
Transitioning home,Adopting different ways of doing things post TBI
Bob Woodruff Family Fund for TBI • invisible scars of TBI: cognitive and behavioral impairments
Acknowledgement: “We are in awe of all that you do”
In an Instant
Author: Margaret Watkins
Perspective: both autobiographical and second person
Neurologic disorder: SAH
The Fine Line
She was always cold, though staff were comfortable
Minor discomforts were disproportionately annoying• Skin: dry, felt as if molting• Breath smelled terrible, teeth felt as if wearing sweaters, lemon swabs left
mouth feeling like bottom of birdcage
Gentle spongebaths were painful over sites of previous IV’s, still appreciated cosmetic enhancement
Sounds resonant/amplified
Wanted: SLEEP!!!
The Fine Line
Upon leaving ICU, tried to express gratitude to nursing for participating in her preservation, seemed like insufficient compensation for their tireless dedication
Fear of leaving ICU, had a security blanket, now what??
Zealous and handsome nurse took on personal challenge of getting Margaret fatter and more upright
Paranoia: hard to be civil to the night shift as she misinterpreted their actions
The Fine Line
Shower: most memorable in her life
Nurses: angels of mercy, one had a benign tumor, recognized comfort measures and moral support, esp in the darkness of night
Narcotic w/d, sleep deprivation, improving temp instability: nurses present
The Fine Line
Author: Liz Holzemer Perspective: first person Neurologic disorder:
meningioma
Curveball: When Life Throws You a Brain Tumor
The shocking news, the inundation of questions
“upstairs roommate”
Martin, nurse in ICU, cared for over multiple days, “I can’t pinpoint why, but Martin made me feel it would be ok and I would get through this”
Unprepared for the amount of sleep that she needs, “Zombie-like”, AED’s sluggish, fatigue
Curveball: When Life Throws You a Brain Tumor
Frustration of battling invisible deficits, of others minimizing her side effects.
Meningomommas-hope, friendship, laughter
Just do it”, reinvent yourself!
Helpful guidelines/brain tumor manuals, ?’s To ask the neurosurgeons, what to expect after brain surgery
Curveball: When Life Throws You a Brain Tumor
Author: Suzy Becker
Perspective: lightly humorous first person
Neurologic disorder: seizures and a brain mass
I Had Brain Surgery, What’s Your Excuse?
Early part of book is a good illustration of denial when she recounts how she ‘explained away” what would eventually be diagnosed as seizures
Notes that no one, not even medical personnel, likes to use the word ‘cancer’
Talks about how medical personnel talk about what’s going on right then but rarely relate it to a whole treatment plan
Mentions various nurses who were helpful to her
Aphasia from the perspective of the patient
I Had Brain Surgery, What’s Your Excuse?
Author: Christopher Reeve
Perspective: straightforward first person
Neurologic disorder: cervical spine injury resulting in quadriplegia
Still Me
Author: Christopher Reeve
Perspective: first person reflections on life post injury
Neurologic disorder: cervical spine injury resulting in quadriplegia
Nothing is Impossible
“my immediate reaction was that such a life was unacceptable, even though I knew absolutely nothing about living as a vent dependent quadriplegic.”
“usually I had these conversations late at night with the residents and nurses on duty in the unit.”
Tries to use humor to lighten situation
Nothing is Impossible
Talks about logistics of going places: the wheelchair, hospital bed, supplemental oxygen, voltage converters, battery chargers
Talks about special wheelchair, specially equipped van, need to remodel house
Nothing is Impossible
Initially smell and taste of food was “repulsive”
Refers to his ongoing medical issues: skin breakdown, infections, pneumonia, GI issues
Used his celebrity for advocacy
Nothing is Impossible
Rescuing Jeffrey
Author: Richard Galli
Perspective: Straightforward first person account of his and his family’s struggles in the first days after his son’s cervical spine injury
Talks about all the support from family and friends
Talks about how much everyone cried as they waited to see if Jeffrey would stabilize
Wants be good father to his injured son
Rescuing Jeffrey
“Everyone tells us about Option One. They tell us a lot about Option One. He goes into the system. He gets put in a wheelchair. He gets put on a respirator. He stays that way forever. Why is no one asking us about Option Two?”
“What is Option Two?” Dr Bodner asked us. “Option Two is we terminate our son’s life.”
Rescuing Jeffrey
Jeffrey was 17 year old who took far more joy in physical activity than intellectual pursuits
Hospital personnel very upset when family broached topic of withdrawal of care
Family is very worried about how future will play out, who will care for Jeffrey, how will he feel about everything
Likens the eventual decision to being drawn down a River, carried along by momentum.
Rescuing Jeffrey
“This is the story of how a family-my family- first cheated death and then flirted with death over the next ten days.”
His son Jeffrey dove into a swimming pool, struck his head and sustained a cervical spine injury. He had to be resuscitated after he was pulled from the pool so in the first 48 hours, it was not clear if there was also brain damage with which to contend.
Rescuing Jeffrey
Author: John Callahan
Perspective: darkly humorous first-person account
Neurologic disorder: cervical spine injury resulting in quadriplegia
Don’t Worry, He Won’t Get Far on Foot
Looks at how he went about making a life for himself after a drunken MVC leaves him with a C5-6 cord transection
Had much better relationship with nurses’ aides in ICU than with nurses
Went to Rancho Los Amigos for his spinal cord rehab
Learned the most from other patients
Don’t Worry, He Won’t Get Far on Foot
“adopted quadriplegic recovering alcoholic cartoonist”
“The nurses remembered me, later on, as pretty feisty.”
[in the ICU]..”the days and nights ran together with none of the psychological relief that comes from a real sleeping-and-waking cycle.”
“I couldn’t get used to the lack of sensation….I felt like a floating head.”
“People who acted like I was a human being were scarce.”
Don’t Worry, He Won’t Get Far on Foot
Author: Reynolds Price
Perspective: straightforward first person
Neurologic disorder: spinal cord tumor/paralysis
A Whole New Life
“In all my eventual hospital time, I never encountered better nurses than the no-nonsense yet merciful women who worked Intensive Care round the clock.”
Chronicles his deteriorating mobility even as treatment progresses
Talks about the pain which becomes chronic (and which will increase over time though that is not chronicled in this book)
Speaks eloquently to topic of when and how doctors should share news about prognosis with patients
Talks about specific doctors and the quality of his interactions
A Whole New Life
Staff book club Choice of several books
• Staff would vote on which to read in coming year
Set up quarterly discussions• On-line group for hospital based staff• Meet over coffee for clinic based staff?
Moderator to provide directed questions and monitor discussion
Could be used in evaluations or clinical ladder
Staff book club Decide: theme for year or variety of stories
Consider mixing patient memoirs with pertinent studies• e.g. studies on quality of life for patients with cervical spine injury and
patient autobiography
