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

1. 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

2. Flying Lessons • Author: Joan Grady-Fitchett • Perspective: straightforward first person account • Neurologic issue: Parkinson’s disease

3. 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 Parkinson’s disease • The doctor who first diagnosed her makes a negative impression • Does not let her diagnosis take over her life

4. Always Looking Up • Author: Michael J. Fox • Perspective: upbeat straightforward first person account of life with a chronic illness • Neurologic disorder: Parkinson’s disease

5. 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

6. 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

7. Life in the Balance • Author: Thomas Graboys,MD • Perspective: first person account of life with chronic illness • Disease: Parkinson’s disease and Lewy body dementia

8. 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

9. 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.”

10. 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

11. 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

12. The Spirit Catches You and You Fall Down • Author: Anne Fadiman • Perspective: straightforward third person • Neurologic disorder: Hmong child’s intractable seizure disorder

13. 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

14. The Two Kinds of Decay • Author: Sarah Manguso • Perspective: relatively straightforward first person • Neurologic disorder: Chronic Idiopathic Demyelinating Polyneuropathy

15. 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

16. 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.”

17. Thaw • Author: Monica Rae • Perspective: fictional account • Neurologic disorder: protagonist has Guillain-Barre Syndrome

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

19. The Butcher’s Daughter • Author: Sandra Lesher Stuban, RN • Perspective: straightforward first person account of life with chronic degenerative illness • Neurologic disorder: ALS

20. 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

21. 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

22. 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

23. 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  

24. The Diving Bell and the Butterfly • Author: Jean-Dominique Bauby • Perspective: dictated first person account • Neurologic disorder: locked-in syndrome following a stroke

25. 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 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.

26. 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?” .

27. 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.

28. My Stroke of Insight • Author: Jill Bolte Taylor • Perspective: straightforward first person • Neurologic disorder: Left MCA AVM rupture

29. 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”

30. 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

31. 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

32. 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

33. My Stroke of Luck • Author: Kirk Douglas • Perspective: straightforward first person • Neurologic disorder: ischemic stroke

34. 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

35. My Year Off • Author: Robert McCrum • Perspective: first person account • Disorder: stroke (MCA/BG)

36. 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.”

37. 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.”

38. 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

39. 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.”

40. To Love What Is • Author: Alix Kates Shulman • Perspective: straightforward second person account about her husband • Neurologic disorder: traumatic brain injury

41. 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.”

42. 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.

43. A Three Dog Life • Author: Abigail Thomas • Perspective: straightforward second person account about a relative • Neurologic disorder: husband’s traumatic brain injury

44. 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”

45. 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.”

46. Where is the Mango Princess? • Author: Cathy Crimmins • Perspective: lightly humorous second person account about a relative • Neurologic disorder: husband’s traumatic brain injury

47. 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

48. 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.

49. 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

50. 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