Showing 151 - 160 of 515 annotations tagged with the keyword "Disability"

Scar Tissue

Ignatieff, Michael

Last Updated: Dec-10-2009
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The story of a woman artist's slow decline into dementia and death as told through the eyes, words, and reflections of her philosophy professor son. Through his memories of their 1950s life together, he reconstructs a speculative analysis of her early married life with his soil-scientist, Russian-immigrant father.

The one older brother becomes a neuropathologist who investigates the very disease that slowly strips their mother of herself. Their father tends to her growing needs at the family farm, but he dies suddenly and she must be placed in an institution where one nurse alone seems to respect her dignity.

The brothers' rivalries and misunderstandings are recapitulated in their different responses to their father's death and their mother's illness: the physician retreats to scientific explanations of the "scar tissue" in her brain; the philosopher looks for evidence of personhood and for reassurance that death should not be feared. His obsession with his mother's condition stems from a deeply felt sense of guilt; it destroys his marriage and condemns him to depression, hypochondria, and shame as he creates and diagnoses the same illness in himself, long before it can be detected by doctors.

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Annotated by:
Duffin, Jacalyn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Augusto and Michaela Odone (Nick Nolte and Susan Sarandon) are the adoring parents of a bright little boy who inexplicably develops alarming behavioral problems, after they return from working in the Comoro Islands. A series of investigations results in a diagnosis of adrenoleukodystrophy (ALD), but the boy rapidly deteriorates into a bed-ridden, inarticulate state. Frustrated by the medical profession's inability to help, Augusto and Michaela embark on an odyssey of salvation, studying lipid metabolism, promoting international conferences, and trying to disseminate their findings to other parents.

Their insights lead them to experiment with at least two effective therapies, one of which is erucic acid (Lorenzo's oil). Michaela feels guilt as well as grief, when she understands that the X-linked disease is passed from mother to son. In an effort to keep Lorenzo at home, she refuses to admit the extent of his disability, alienates her family, dismisses nurses, and assumes most of the care herself, nearly ruining her own health and her marriage. The film ends hopefully with tiny signs of recovery in Lorenzo. The credits roll over the faces and voices of happy, healthy-looking boys who have been taking Lorenzo's Oil.

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Annotated by:
Duffin, Jacalyn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

In dire financial straits, the physician-researcher, Dr. Malcolm Sayres (Robin Williams), accepts a clinical job for which he is decidedly unsuited: staff physician in a chronic-care hospital. His charges include the severely damaged, rigid, and inarticulate victims of an epidemic of encephalitis lethargica. Sayres makes a connection between their symptoms and Parkinson’s disease. With the hard-won blessing of his skeptical supervisor, he conducts a therapeutic trial using the new anti-Parkinson drug, L-Dopa.

The first patient to "awaken" is Leonard Lowe (Robert De Niro) who, despite being "away" for many years, proves to be a natural leader, with a philosophical mind of his own. Other patients soon display marked improvement and their stories are told in an aura of fund-raising celebration marked by happy excursions.

Gradually, however, problems develop: patients have trouble adapting to the radical changes in themselves and the world; Leonard grows angry with the imperfection of his rehabilitation; the horrifying side effects of L-Dopa appear; and Leonard’s mother (Ruth Nelson), initially happy for her son’s recovery, is later alienated by the concomitant arousal of his individuality, sexuality, and independence. The film ends with "closure of the therapeutic window" and marked regression in some patients, but not before they have awakened clinical commitment and a new ability to express feelings in their shy doctor.

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Bottle Talk

Rivard, Ken

Last Updated: Dec-10-2009
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Plays

Genre: Dramatic Monologue

Summary:

A series of approximately 175 short fictional monologues or "postcards," each less than a page, in the voice of an alcoholic--the view from "the bottle"--describing the obsession, rationalization, pain, dissolution, and toll that alcoholism takes on career, body, friends and family. Each "postcard" is written in a different voice: sometimes old, sometimes young; male or female; reformed or not. In few words, they capture intense moments that vividly evoke the misery and folly in the rest of alcoholic existence. There is humour and despair.

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Where is the Mango Princess?

Crimmins, Cathy

Last Updated: Nov-30-2009
Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The lives of writer Cathy Crimmins, her lawyer husband Alan Forman, and their seven-year-old daughter were changed forever on July 1, 1996, at a lake near Kingston, Ontario. "Alan’s brain got run over by a speedboat. That last sentence reads like a bad country-western song lyric, but it’s true. It was a silly, horrible, stupid accident." (p. 5). While Alan steered a small boat back to dock at the end of their vacation, a teenager drove a speedboat literally over him, causing major traumatic brain injury (TBI) including seizures, coma, hemorrhage and paralysis.

Crimmins chronicles her husband’s remarkable recovery with a mix of humor, medical information, anger at HMO denial of benefits, and gratitude for the care of physicians, nurses, therapists, EMT, friends and family during this grueling, and in many ways, never-ending ordeal. Although Alan survived -- and is now capable of walking, speaking, reading, loving, working and driving -- he is a different person. The injury to his frontal lobes causes him to be disinhibited, erratic, angry, irrational, petulant, obsessive, devoted yet cruel to his daughter, and prone to severe "cognitive fatigue."

TBI is a bizarre, unpredictable illness. Crimmins notes that the degree of Alan’s recovery is atypical for the force of his trauma. In addition, TBI survivors say and do wacky things: "Where is the mango princess?" was one of Alan’s first utterances after emerging from his coma. Alan’s pre-accident sharp-edged humor was replaced by bland affability and a disturbingly vacant gaze. Yet some of what he says and does is heart wrenching and poignant.

The book clearly documents that the trauma is not limited to the patient. As Crimmins so eloquently and honestly recounts, she, her daughter, and all who knew Alan were traumatized by the accident and its aftermath.

Crimmins is an aggressive caregiver, thrust kicking and fighting into the caregiver role. Her advocacy for her husband, including research into the best rehabilitation facility, day hospital, vocational rehabilitation program, doctors, therapists, etc., was unwavering and crucial to his optimal care and outcome.

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Equal Partners

Heymann, Jody

Last Updated: Nov-22-2009
Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

A new graduate from medical school experiences her first seizure on the eve of beginning internship. Diagnostic workup reveals a mass in the wall of the third ventricle, which, at the time of surgery, is a vascular malformation. The narrative takes the reader through the four years of the author's struggle with her diagnosis, treatment and resultant disability, a seizure disorder.

Laced through the tale are patient vignettes, told from the vantage point of a newly sensitized doctor who is a long-term patient herself. Heymann is gently critical of many of the interactions she experienced with her physicians, attempting to chide her colleagues into being more sensitive to patient-centered concerns.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The story opens two years into the writer's undiagnosed hematological disorder, focusing the narrative on the two most significant issues in this young woman's life--her first experience with a love relationship that is to result in a long-term commitment, and the disease that for years is to affect the way she lives her day-to-day life. Breslin describes in considerable detail her encounters with hospitals and health care professionals, none of whom are able to diagnosis nor prognosticate but continue to treat each new symptom as it arises.

In the midst of this uncertainty which pervades the memoir, are the subtexts of the love between the author and her husband and the relationship she maintains with her father. The reader, presumably like the author herself, never learns the name of the mysterious illness that informs the tale.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

Ott opens her treatment of the cultural, social and economic evolution of tuberculosis in the U.S in the mid-nineteenth century, although she refers back to antecedent historical events. The study follows how the evolving principles of bacteriology were applied to a syndrome the medical world did not recognize as having a single etiology. Tuberculosis did not fit the epidemiologic patterns of epidemic diseases as recognized by public health specialists.

Ott focuses heavily on the economics of the illness, as well as on its changing social status. Her final chapter examines the contemporary meaning of the disease as it once again is heralded as a public health problem in the U.S.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This is the story of a child/young adult who had the misfortune of multiple health problems from the age of three until his death at 19. But even more than Jesse's story, this is the narrative of and by Jesse's father as he recalls the emotional rollercoaster accompanying the abbreviated span of his oldest son's life. The author kept detailed journals of his and his son's experiences with the health care professions, while also collecting the boy's artwork which appears to be Jesse's personal record of his own internal struggle.

Although not chronologically linear, the narrative allows the reader into the soul of the parents' agony, from the time of Jesse's initial diagnosis of hydrocephalus, through management of inflammatory bowel disease, and into the final chronicle of unsuccessful liver transplantations.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: History

Summary:

This is the wrenching history of the development, evolution, and eventual obsolescence of the leper colony established in 1866 on the isolated and only sometimes accessible peninsula on the Hawaiian island of Molokai--and the lives of the people who were exiled there to die over a period of more than 100 years. The tale opens with the declaration by the Board of Health that all persons proven (or strongly suggested) to be afflicted with leprosy be exiled immediately to the site on Molokai.

The author dramatically describes the selection and separation of the exiles from their families and the tortuous and sometimes deadly sea voyage to their primitive new homeland. Mixed with the public policy and the individuals who made and implemented it, are the descriptions of the hospital in Honolulu where diagnoses and dispositions were rendered, as well as the poignant personal stories of the "detainees." The reader follows the colony from the arrival of its first 13 patients in 1866, through its peak population of 1,144, to its residual 28 in 2003.

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