Book Club: Using The Portrayal Of Neuroscience Nursing In Contemporary Non-fiction To Improve Practice

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Book Club Using The Portrayal Of Neuroscience
Nursing In Contemporary Non-fiction To Improve
Practice

• Melissa V Moreda RN BSN CNRN Susan Chioffi RN MSN
  CCRN ACNP-BC

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Flying Lessons

• Author Joan Grady-Fitchett
• Perspective straightforward first person account
• Neurologic issue Parkinsons disease

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Flying Lessons

• 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 Parkinsons
  disease
• The doctor who first diagnosed her makes a
  negative impression
• Does not let her diagnosis take over her life

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Always Looking Up

• Author Michael J. Fox
• Perspective upbeat straightforward first person
  account of life with a chronic illness
• Neurologic disorder Parkinsons disease

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Always Looking Up

• Second of his memoirs dealing with living with
  Parkinsons
• 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

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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

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Life in the Balance

• Author Thomas Graboys,MD
• Perspective first person account of life with
  chronic illness
• Disease Parkinsons disease and Lewy body
  dementia

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Life in the Balance

• Physician who was still in prime career years
  develops Parkinsons 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

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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.

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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 hes
  walking and moving

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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

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The Spirit Catches You and You Fall Down

• Author Anne Fadiman
• Perspective straightforward third person
• Neurologic disorder Hmong childs intractable
  seizure disorder

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The Spirit Catches You

• 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

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The Two Kinds of Decay

• Author Sarah Manguso
• Perspective relatively straightforward first
  person
• Neurologic disorder Chronic Idiopathic
  Demyelinating Polyneuropathy

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The Two Kinds of Decay

• Looks back at the several years of intermittent
  hospitalizations related to her CIDP
• Good descriptions of patients 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

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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.

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Thaw

• Author Monica Rae
• Perspective fictional account
• Neurologic disorder protagonist has
  Guillain-Barre Syndrome

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Thaw

• Author is a physical therapist
• Captures the roller coaster of emotions, pain,
  frustration, fatigue, dependence and uncertainty
  of GBS
• Physically disconnected family

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The Butchers Daughter

• Author Sandra Lesher Stuban, RN
• Perspective straightforward first person account
  of life with chronic degenerative illness
• Neurologic disorder ALS

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The Butchers 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 dont we????
• Trach/PEG discussion early on for sons sake,
• questions it 3 months later as completely
  paralyzed, has lost inner spark

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The Butchers 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

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The Butchers 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

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The Butchers 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  

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The Diving Bell and the Butterfly

• Author Jean-Dominique Bauby
• Perspective dictated first person account
• Neurologic disorder locked-in syndrome following
  a stroke

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The Diving Bell and the Butterfly

• 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 rescueThe 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.
  

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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?
• .

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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.

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My Stroke of Insight

• Author Jill Bolte Taylor
• Perspective straightforward first person
• Neurologic disorder Left MCA AVM rupture

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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 cant 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

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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 wasnt deaf. Lack of
  willingness to connect. SCARED Jill. Did not feel
  safe

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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

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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

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My Stroke of Luck

• Author Kirk Douglas
• Perspective straightforward first person
• Neurologic disorder ischemic stroke

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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
• Operators Manual

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My Year Off

• Author Robert McCrum
• Perspective first person account
• Disorder stroke (MCA/BG)

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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.

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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.

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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

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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.

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To Love What Is

• Author Alix Kates Shulman
• Perspective straightforward second person
  account about her husband
• Neurologic disorder traumatic brain injury

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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.

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To Love What Is

• The terrifying sundowning that overcomes him
  when dusk descends, as if hed 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.

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A Three Dog Life

• Author Abigail Thomas
• Perspective straightforward second person
  account about a relative
• Neurologic disorder husbands traumatic brain
  injury

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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
  Richs personality.I have never processed this
  information.
• He is there, and not there

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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 couldnt take
  care of him.

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Where is the Mango Princess?

• Author Cathy Crimmins
• Perspective lightly humorous second person
  account about a relative
• Neurologic disorder husbands traumatic brain
  injury

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Where is the Mango Princess

• 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

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• 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 cant
  do anything for your husband at this point.

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In an Instant

• Authors Lee and Bob Woodruff
• Perspectives straightforward second and first
  person account about his injury
• Neurologic disorder his work-related traumatic
  brain injury

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In an Instant

• Chronicles Bobs and Lees 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

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In an Instant

• Nursing
• preparing wife for what to visibly see upon
  first visit, very calm, knowledgeable,
  immediately trusted her.
• presence in family intimacy daughters kissing
  game, holding sedation for better exam, I love
  you
• really marked Bobs progress. I really loved
  these nurses.
• Preparation of whats to come Vivid descriptions
  of coma emergence
• Creative solutions for dealing with her husband

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In an Instant

• Multiple, complicated surgeries
• Extreme gratitude for nursing/medical staff
• Its a long road, The brain is like a computer
  rebooting, Its not a sprint, but a marathon
• Coping with brain injury emergence bed, walking
  around the unit, aphasia
• Bobs first memory
• waking up with excruciating painas 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

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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

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The Fine Line

• Author Margaret Watkins
• Perspective both autobiographical and second
  person
• Neurologic disorder SAH

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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 IVs, still appreciated cosmetic
  enhancement
• Sounds resonant/amplified
• Wanted SLEEP!!!

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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

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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

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Curveball When Life Throws You a Brain Tumor

• Author Liz Holzemer
• Perspective first person
• Neurologic disorder meningioma

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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 cant 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, AEDs sluggish, fatigue

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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

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I Had Brain Surgery, Whats Your Excuse?

• Author Suzy Becker
• Perspective lightly humorous first person
• Neurologic disorder seizures and a brain mass

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I Had Brain Surgery, Whats 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
  whats 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

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Still Me

• Author Christopher Reeve
• Perspective straightforward first person
• Neurologic disorder cervical spine injury
  resulting in quadriplegia

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Nothing is Impossible

• Author Christopher Reeve
• Perspective first person reflections on life
  post injury
• Neurologic disorder cervical spine injury
  resulting in quadriplegia

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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

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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

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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

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Rescuing Jeffrey
Author Richard Galli Perspective
Straightforward first person account of his and
his familys struggles in the first days after
his sons cervical spine injury
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Rescuing Jeffrey

• 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

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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 sons life.

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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.

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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.

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Dont Worry, He Wont Get Far on Foot

• Author John Callahan
• Perspective darkly humorous first-person account
• Neurologic disorder cervical spine injury
  resulting in quadriplegia

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Dont Worry, He Wont 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

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Dont Worry, He Wont 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 couldnt get used to the lack of sensation.I
  felt like a floating head.
• People who acted like I was a human being were
  scarce.

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A Whole New Life

• Author Reynolds Price
• Perspective straightforward first person
• Neurologic disorder spinal cord tumor/paralysis

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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

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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

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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

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THANK YOU!!!!!!!!!
schioffi_at_hotmail.com mvmoreda_at_yahoo.com  
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