Showing 61 - 70 of 186 annotations tagged with the keyword "Dementia"
When Jamie Heywood, the eldest of three brothers in a tight New England family of engineers, learns that his middle brother Stephen (they all are in their 20’s at the outset of this drama which begins, for them, in early 1998) has amyotrophic lateral sclerosis (ALS), he has just assumed the position of entrepreneur in technology transfer at Gerald Edelman’s Neurosciences Institute, the prestigious think tank of the 1972 Nobel Laureate in Physiology and Medicine, in La Jolla, California.
Jamie quickly announces his resignation and simultaneously his decision to devote his life to helping his brother in the only way he can--as manager, CEO, COO and staff of, initially, a loosely organized team effort to develop a cure for ALS, an insidious wasting disease of the nervous system that progressively leaves the person with the merest remnants of voluntary motor function.
Jamie’s resignation and his move from the West to East coast is but the mildest of changes in the weather for what becomes a perfect storm of technology recruiting, fund-raising, career-rebuilding and the emotional equivalents of El Niño, profoundly affecting at least four families, three of them Heywoods: Stephen Heywood, the strapping carpenter/house-restorer with ALS, and his wife, Wendy; Jamie, and Melinda, his belly-dancing wife with a PhD in medieval French literature; the brothers’ mother, Peggy, and father, John; and, lastly, the author and his father, Jerome, and mother, Ponnie (a Polish diminutive).
Concomitant with Stephen’s development of ALS, Ponnie begins to evidence the dementia of Steele-Richardson-Olszewski syndrome, also known as progressive supranuclear palsy, a form of brain decay uncannily similar to ALS. (Fortunately for the Heywoods, ALS involves only the motor nerves, not the cognitive apparatus.)
The author’s decision to include his family’s ordeal is wise, generous and instructive. The Heywoods and Weiners are both engineering families with an academic engineer as the pater familias and both are trying their best to cope with a deteriorating illness that dismantles the center of all cerebral engineering activity, the brain. The comparison of the diseases and the responses of all the players involved are culturally and psychologically dissected with the author’s trademark precision and kindness. But this book, as the title indicates, is more about the keeper than the brother.
Within minutes of his learning of Stephen’s diagnosis, Jamie becomes a man possessed. He moves quickly, as though by intuition and almost a fated skill, from technology transfer to technology-bricolage; genetic therapy on the fly; and people-, funding- and support-transfer. In fact, when there is no transfer involved, Jamie creates in order to transfer.
Like Gregor Samsa, in the short story by Franz Kafk, from whom Weiner also deftly borrows another parable, "An Imperial Message," (to illustrate, metaphorically, the pathophysiology of ALS as a disease in which neural messages, like the Imperial Message, go awry), Jamie undergoes a metamorphosis, albeit admittedly much less drastic than Gregor’s. He molts his undergraduate degree in engineering at MIT to emerge as a self-appointed manager of any and all ALS research and gene therapy in the U.S. that might help retard the progress of his brother’s illness.
Recruiting, petitioning, nourishing, cajoling, funding, and courting researchers and clinicians alike, Jamie meets, entertains, enlists and co-ordinates the efforts of gene therapy researchers and other medical scientists. He becomes a fund-raiser with the help of Melinda and her family of belly dancers, raising $240,000 as a result of the First Annual Belly Dance Extravaganza. His efforts involve the Heywood and Weiner family members, as epicentric waves of activity inevitably affect them all.
We watch, through Weiner’s eyes (and the diaries of Wendy and Melinda, whom he cites with permission), as the four families experience the predictable mood shifts that accompany a devastating illness and the great adventure of a risky attempt to work a miracle (a miracle that Jerome E. Groopman grumpily and stuffily bemoans in a cited Wall Street Journal editorial): excitement when a genetically engineered ALS mouse outlives its cohorts and money starts to flow; and disillusionment, when Stephen’s disease relentlessly progresses, Jamie’s marriage dissolves for a lack of boundaries, as Melinda, Jamie’s wife, records in her diary, and the author’s mother slips deeper into a dementia that Lucretius, Weiner’s authorial inspiration of the book, would easily recognize as part of the world explored in his famous treatise De Rerum Natura.
By the end of the book, there is an air of exhaustion yet surprising calm--perhaps the calm after the storm--as we witness the normalcy of Stephen, in his motorized wheelchair, playing with his son. As Stephen repeatedly affirms to Weiner, now a family friend and no longer merely a reporter, "I’m fine."
This is a collection of Elizabeth Layton's work, organized chronologically from 1977-1991. Contents include a biography and epilogue by a 27-year-old reporter (Don Lampert) who discovered, promoted, and became a dear friend of "a depressed grandmother with a handful of drawings under the bed."
Layton discovered contour drawing when she was age 68 and claims to have drawn herself out of mental illness. Her subject matter is self-portraiture, marriage, aging, depression, grandmothering, dieting, and political commentary (nuclear holocaust, capital punishment, mythology and hospital death).
Summary:A Place Called Canterbury by social historian Dudley Clendinen, former New York Times national correspondent and editorial writer, provides readers with an intimate and revealing account of aging in a particular place at a particular time--Canterbury Tower in Tampa, Florida. The story about the author's mother, Bobbie--and so many others--begins in 1994, a few years after the death of James Clendinen, Bobbie's husband of 48 years, and known to the community as the progressive editor of the Tampa Tribune. Although she had been "falling apart, a piece here, a piece there...collapsing vertebrae...bent, frail, and crooked...subject to spells and little strokes...." (p. xii),
Summary:Lenny Savage (Philip Bosco) lives in the Sun City retirement community in Arizona with Doris, his companion of 20 years. When Doris dies, her children sell their home and Lenny's son and daughter, both in their late 30's, become responsible for his care. Wendy (Laura Linney) is a playwright in New York City. Jon (Philip Seymour Hoffman) is a theater professor in Buffalo. Niether has seen Lenny for many years. He had been an abusive and violent father. The mother is absent, apparently having abandoned the family when the children were young. Both Wendy and Jon seem lost. Wendy is having an unsatisfying affair with a married man and Jon's partner, Kasia, is about to return to Poland because her visa has expired and he is not ready to marry her. Reaquainting themselves with their father forces them to confront the danger of letting unhappy childhood haunt them, and makes them recognize their difficulties being adult (they have Peter Pan names).
Summary:George Hall has recently retired when he discovers a lesion on his hip which he takes to be skin cancer. Even though his doctor tells him that it is simply eczema, George is not reassured for long. His worry gradually becomes panic. He learns that his wife, Jean, is having an affair with an old friend of his, that his daughter, divorced single mother Katie, is going to marry a man he disapproves of, and that his son, Jamie, intends to bring his gay lover to the wedding. At this point his hypochondria becomes distinctly pathological. He attempts to excise the lesion himself with kitchen scissors and ends up in hospital.
Summary:This is a collection of approximately 45 pathographies-essays, memoirs, biography, autobiography, poems, and reflections on illness experiences -grouped loosely into four categories of related subject matter. These categories are: Illness and Identity: Dynamics of Self and Family; Concealing Illness, Performing Health; Agency and Advocacy; Medicine at the Margins. The majority of the pieces are written by non-health care academics about their experiences with a wide variety of illnesses. A few have been written by or with health care professionals.
Summary:In the Arctic, winter goes on for ten months every year. The cold temperatures penetrate every aspect of human life. Existence is a struggle. In the Canadian community of Rankin Inlet, an Inuit woman finds personal tragedy as abundant as the snow. Victoria is diagnosed with tuberculosis (puvaluq) as a child and sent to a sanatorium far south of home. Following treatment with medication and a thoracoplasty, she returns to her town years later. Victoria's experience has changed her view of the world but she quickly discovers that in her absence, the people and locale have transformed too.
This is another wonderful book from Dr. Sacks. The subtitle, “Tales of Music and the Brain,” is accurate: we have a charming and informative mixture of stories of patients and the neurophysiology that interprets how music is processed and performed. The book is synthetic in combining cases from his practice, other clinical reports, letters from correspondents, references to medical literature, and even Sacks’s own personal experiences with music.
Sacks finds that humans have a “propensity to music,” something “innate” in human nature, perhaps like E. O. Wilson’s biophilia. “Our auditory systems, our nervous systems,” he writes, “are indeed exquisitely tuned for music” (xi). Although humans have been involved with music for millennia, it is only in the last few decades that medical imaging (functional MRI, PET) has shown what areas of the brain are active when music is heard.
While humans routinely enjoy music, the book emphasizes unusual events and neurological patients, in short, departures from the norm. Sacks—himself a lover of music—reports on his own experiences with hallucinatory music and anhedonia (loss of pleasure) in hearing music. He describes going to hear the great baritone Dietrich Fischer-Dieskau but finding that he could not, on that day, perceive the beauty of the music. Another condition “amusia,” or loss of musical ability, can be chronic, acquired, or temporary.
Some patients have had injuries or diseases of the brain that change how music is perceived. A man hit by lightning is suddenly obsessed with piano music. Another man (who survived a brain infection) has amnesia about many things but can still make and conduct music at a professional level. The concert pianist Leon Fleisher visits Sacks to discuss his dystonia, or loss of muscle function in one hand (with implications for the brain). Rolfing and Botox helped him heal and he returned to two-handed performances.
Sacks discusses other phenomena that involve brain structures, for example, perfect pitch; persons with this ability have “exaggerated asymmetry between the volumes of the right and left planum temporale” (128). People who experience synesthesia (perceiving notes as colors) have cross activation of neurons in different areas of the brain. Professional musicians (and patients with Tourette’s) demonstrate cortical plasticity, that is they have expanded areas of the brain for particular uses. Children with Williams syndrome have brains influenced by a microdeletion of genes on one chromosome; they have some cognitive deficits and also a great responsiveness to music. For some conditions, the brain determines all; for others, behavior components are also important.
Summary:A beautiful elderly couple are forced to confront Fiona’s (Julie Christie) problems with memory. Always stylish and active, she begins to neglect her appearance and do odd things. She loses her way while cross-country skiing in a familiar terrain; at nightfall, Grant (Gordon Pinsent) finds her frightened and frozen. She decides that she must go into a nursing home, but Grant is horrified to learn that, in order for her to adapt, he may not visit for an entire month. When he finally returns, bearing a bouquet of flowers and hoping for her warm affection, he is stunned to find Fiona pleasant but indifferent to his presence. Instead, she is preoccupied, even infatuated with Aubrey (Michael Murphy), who silently occupies a wheelchair. Fiona is able to interpret Aubrey’s moods and desires.
Summary:This story is set in early nineteen-seventies Tokyo. The point of view is that of Akiko, a working wife and mother of a teenaged son. Her aged parents-in-law live in a cottage next door, but when her mother-in-law suddenly dies of a stroke, Akiko becomes the sole caregiver for her selfish father-in-law Shegezo. As he slides into senile dementia Akiko moves him into her own home, where she almost succumbs to exhaustion and the loss of her independence and career. Ariyoshi's message is clear: society needs to help middle-class families care for elderly relatives.