Showing 1 - 10 of 872 annotations tagged with the keyword "Patient Experience"
Summary:Pamela Steele White was diagnosed with early onset Alzheimer’s disease at the age of sixty-one. A year later, in 2009, as her disease progression was evident, her son Banker, a documentary filmmaker, turned his camera on, and he kept it on until the autumn of 2012. His mother lived another four years.
Summary:Louise Aronson, a geriatrician, argues that we should create Elderhood as the third era of human aging, joining the earlier Childhood and Adulthood. This new concept will allow us to re-evaluate the richness of this later time, its challenges as body systems decline, and, of course, the choices of managing death. This important and valuable book is a polemic against modern medicine’s limits, its reductive focus, and structural violence against both patients and physicians. She argues for a wider vision of care that emphasizes well-being and health maintenance for not only elders but for every stage of life.
Summary:Mallory Smith died of complications following a double-lung transplant for cystic fibrosis (CF). She was twenty-five years old and kept an extensive journal on her computer for 10 years. Salt in My Soul: An Unfinished Life is her memoir, edited by her mother, Diane Shader Smith, from the 2,500 pages of notes, observations and reflections which Mallory Smith wrote. The title refers to the intimate relationship of salt imbalance in cystic fibrosis, and the fact that Mallory felt her most well while swimming in the sea. Diagnosed at age three, she spent much of her days and nights treating the disease with medication, nutrition, chest percussive treatments, breathing treatments, adequate sleep, and aggressive treatment of infections. Unfortunately, while still a child her lungs were colonized with B. cepacia, a resistant bacteria ‘superbug’ which makes transplantation highly risky and hence leads to most centers to not accept CF patients onto their wait lists. Ultimately, University of Pittsburgh does accept Mallory as a transplant candidate, although her health insurance puts up every road block possible to her receiving care.
Summary:Solnit dares the reader to categorize her book. Autobiography, memoir, travelogue, story collection, history, meditations, and pathography could fit. Common to all the categories and subjects covered is storytelling. “It’s all in the telling… and to be without a story is to be lost in the vastness of the world,” Solnit says in book’s opening. Storytelling can bring what is geographically faraway emotionally nearby.
Summary:About 20 Years ago, Linda Clarke, writer, professional storyteller and bioethics consultant was a neurosurgery patient of a colleague, Michael Cusimano at St. Michael's hospital in Toronto Canada. What was a distant relationship turned into one that was much closer. 10 years ago, Linda and Michael had a dialogue about recounting the story of her surgery and their relationship together. Linda became the "architect" of their project-- and they became co-authors in 2019 of In Two Voices: A Patient and a Neurosurgeon Tell their Story. The result is a lyrical co-memoir-- at times riveting, at other times sobering of their shared experience. What is probed goes much deeper than the facts, exposing the actors involved, their lives outside of their callings, their upbringing, and, most importantly, their differing interpretations of an important event during the surgery that only came to full light during the writing process.
Summary:There are 46 poems in this volume (the author's first full-length collection), divided into three parts--the poems in the second section are in memory of women who have died of inflammatory breast cancer, the same disease that claimed the life of the author in August, 2018, when she was forty-nine-years old. Diagnosed in 2004 during her pregnancy, Anya waited until after her son Noah was born to begin cancer treatment. These poems, published in 2010, begin in images of her domestic life and her family, move forward to her cancer diagnosis (p. 17: "Biopsy"), and progress to examine, in poems that balance beauty and pain, what it is like to live with the knowledge of early death. This awareness imparts a crystalline honesty and urgency to every poem.
Summary:A psychiatrist and PTSD (post-traumatic stress disorder) specialist, Dr. Shaili Jain has written a book on PTSD and its many angles, from diagnosis to treatment to a larger perspective on cultural and historic influences on the development of traumatic stress. She weaves the story of her own family’s experience with the Partition of India and Pakistan in 1947, particularly its effect on her father and grandparents, as a way to consider the effect of trauma on family, but also how those traumas become ‘unspeakable.’
Summary:The Scar is a powerful, thoughtful, and moving book, part memoir about the author’s illness across some 30 years, part history of depression and its treatment and part essay to evoke cultural and personal values about sickness, suffering, health, and death. Cregan, a gifted stylist herself, draws on literature that deals with human suffering, mortality, and wisdom. She frankly describes her sorrows and hopes, the death of her baby, her attempts to kill herself, and her survival today with many blessings.
Summary:Thomas De Quincey was a British writer—essayist, mostly—during the first half of the nineteenth century. He is best known for writing about his personal experiences with opium, which appeared in two sequential issues of London Magazine in 1921, and then published as this book in 1822. He would later write a sequel, and later still a more elaborated version of the original.
But I took it: – and in an hour, oh! Heavens! what a revulsion! what an upheaving, from its lowest depths, of the inner spirit! what an apocalypse of the world within me! That my pains had vanished, was now a trifle in my eyes: – this negative effect was swallowed up in the immensity of those positive effects which had opened before me – in the abyss of divine enjoyment thus suddenly revealed. (p. 44)For more of these pleasures, De Quincey drank laudanum over the next ten years at a frequency he describes variously as “occasionally,” “at intervals,” and “seldom…more than once in three weeks: this was usually on a Tuesday or a Saturday night.” He learned that some time was needed between “several acts of indulgence in order to renew the pleasurable sensations,” a property of opioids pharmacologists would later call tolerance (pp. 8-9).
Summary:Headcase explores themes of mental health, mental illness, and the experience of mental health care services by members of the LGBTQ community. The editors state, “We initially conceptualized Headcase in 2014 as a curated collection of personal pieces including essays, poems, illustrations, and photographs by writers and artists both established and new.” (p. xxviii) They further decided to include a broad array of patient, provider, social, racial, and ethnic perspectives to “present a broader, more in depth, and balanced conversation.” (p. xxviii)