.
Here is a very selective cross section of books on dealing with chronic illness. They are presented alphabetically, to see the latest year, do a find (control F) and put in the year you seek. Comments are mostly taken from Amazon.com
Also see books on genetics at: genbiblio.html
Atkinson, David R., Arkinson, David R., Atkinson, Debbie. (1998). Hope Springs
Eternal: Surviving a Chronic Disease. Are Pr; ISBN: 0876044089
The author a victim of a motor neuron disease (ALS), uses his own story to provide
hope for those facing severe illness, for their caregivers and physicians, and
for anyone who wants a preventative approach. Atkinson investigated alternative
treatments and found ways to slow or reverse his illness.
Bainbridge, David The X in Sex: How the X Chromosome Controls Our Lives (2003)
Harvard University Press; ISBN: 0674010280
From Publishers Weekly
In his fourth-century BCE Generation of Animals, Aristotle wondered what made
us into males and females, and the question has vexed scientists ever since.
Bainbridge (Making Babies) shows that the answers are at last partly illuminated,
thanks to advances in our understanding of the mechanisms at work in sex chromosomes.
He debunks once and for all Aristotle's notion that maleness, and hence the
Y chromosome, is a more active, superior state of being, and instead hails the
X chromosome as more profound, interesting and powerful-not just more than its
"sad, shrunken" Y counterpart, but more than any other chromosome
in our cells. First explaining how the sex chromosomes-which he calls the "seeds
of sexiness"-turn undifferentiated embryonic tissue into testicles or allow
the formation of ovaries, Bainbridge goes on to demonstrate how the X chromosome
is actually in control of the process. Examples throughout the animal kingdom
and instances of humans with anomalous chromosome lineups (like XXY or XO) show
X's role in sex determination, autoimmune and sex-linked diseases. Bainbridge
also reveals how women's cells "deal with the double bounty of X chromosomes,"
why girl identical twins are less identical and less rare than boy identical
twins, and how studying women's tumors showed scientists that cancer begins
in a "lone, fatal" cell. With first-rate research and winning, dry
wit, Bainbridge crafts a slim volume of science made simple.
Banks, Denedria Renee. Melodies of My Life: A Disabled Girl's Journey to Womanhood.
ISBN: 0595356818 September 2005 Publisher: iUniverse, Incorporated
Melodies of My Life shares a no-holds-barred coming of age portrait of a young
woman who refuses to let a chronic and debilitating illness define who she is
or what she can achieve. At thirty-one, author Denedria Banks wears many hats
- from daughter to sister to friend; from public speaker to single, fun-loving,
independent Black woman; and from medical social worker to woman with a disability.
Each chapter samples the complex chords, harmonies, and disharmonies of her
life's passions. Banks explores various stages that impacted her search for
self, including self-love and happiness. She ultimately discovers the true love
that comes from putting yourself first, loving your every imperfection, and
literally taking each day one step at a time.
In her own words, Denedria provides a rare glimpse into living with a debilitating
disease. Doctors, nurses, physical and occupational therapists, students, people
with disabilities and their loved ones, and those interested in the human condition
will appreciate the journey of this young woman's life - its darkest hours and
brightest successes.
Boyd, Jeffrey H. Being Sick Well: Joyful Living Despite Chronic Illness. ISBN:
0801012686
Format: Paperback, 254pp
Pub. Date: April 2005
Publisher: Baker Publishing Group
Christian physician Boyd whose own late wife suffered from heart and kidney
problems, paralysis and strokes extends an honest and compassionate resource
for the chronically ill and their caregivers. Boyd has two goals: to persuade
readers that we are facing an epidemic of chronic illness, and to help sick
people have more joyful lives. In good self-help form, he offers 20 strategies
for joyful living. Some of his advice is nuts-and-bolts practical, like the
suggestion to invest in long-term care insurance. Two chapters are devoted to
discussing how spirituality in general and Christianity in particular can help
a person cope with pain and illness. Sometimes, Boyd's advice is a bit anodyne
adopt a positive attitude, don't dwell on your illness, etc. Those things are
easy to say, but harder to do. A more honest examination of anger in the place
of a joyfully sick life might have leavened the loaf. Still, the many case studies
keep Boyd's vision from seeming unattainable. Further, even though the topic
is heavy, Boyd is a humorous and engaging writer. For instance, in urging the
general reader to plow through the one academic and statistical chapter, he
says, In this chapter, you will read about... an adorable 73-year-old grandmother
with gold teeth and neon orange hair, [and] about having your friend amputate
your leg in her kitchen.
Brandt, Avrene (1997) Caregiver's Reprieve: A Guide to Emotional Survival When You're Caring for Someone You Love. Impact Publishers, Inc.; ISBN: 1886230064.
Capossela, Cappy, Warnock, Sheila, Miller, Sukie (1995) Share the Care: How to
Organize a Group to Care for Someone Who Is Seriously Ill. Fireside; ISBN:
0684811367.
From Booklist: Preparing for the serious illness of someone near and dear is
certainly prudent, but actually doing it seems off-putting and even morbid to
many, which makes Caposella and Warnock's book vitally important. Writing
pleasantly and calmly and organizing their material admirably, they advise
dealing with caregiver burnout by forming an "alternate family" and spreading
the responsibilities and strain of providing care to the stricken among them.
They include sample forms, checklists, and scripted passages for use in forming
such support groups. Theirs is a highly structured approach that in times of
crisis may prove invaluable. Although aimed at use by organized groups, it may
also be of great value to individuals in need of a plan of action or background
information. Capossela and Warnock's meticulous coverage of every phase and
eventuality of a sensitive situation and the fact that the book is easy to use
as a reference make it outstanding in a crowded field. Mike Tribby.
Caruso, Ellen. (1998). Keeping Them Healthy, Keeping Them Home: How to Care for
Your Loved Ones at Home. Health Information Pr; ISBN: 1885987137.
Book Info from Health Information Press: Provides consumers with practical
solutions to caring for a loved one at home. Discusses emergencies,
safe-proofing the home, insurance companies, emotional and physical fatigue,
and providing quality care.
Charash, Leon I. (Editor) (1987) Realities in Coping With Progressive
Neuromuscular Diseases. The Charles Press, Publishers; ISBN: 0914783203.
An edited book focussed on a professional audience and written by 51 experts.
Focus is on ALS and DMD and how coping mechanisms can be facilitated at each
stage of the disease.
Cohen, Richard M. Blindsided: Lifting a Life above Illness. ISBN: 0060014105
February 2005
Publisher: HarperCollins Publishers.
Richard M. Cohen was a twenty-five-year-old television news producer when he
was diagnosed with multiple sclerosis. For thirty years he has battled MS, along
with two recent bouts of colon cancer. In Blindsided he chronicles a life characterized
by accomplishment and adversity.
As Cohen writes, "This book is about surviving and flourishing, rising
above fear and self-doubt and, of course, anger." With honesty and humor,
he explores the effects of illness on his relationship with his wife, Meredith
Vieira (host of ABC's The View), and their three children. He tackles the nature
of denial and resilience, the struggle for emotional health, and the redemptive
effects of a loving family. Blindsided is about celebrating life and coping
with chronic illness, seen through the lens of one man's inspiring story.
Dass, Ram. (2001). Still Here: Embracing Aging, Changing, and Dying. Reissue
edition. Riverhead Books; ISBN: 1573228710
Indeed Ram Dass is still here in this moment after a crippling stroke to guide
us toward an understanding of our place among our fellows in the world as we
grow old. Once he was Richard Alpert, Harvard professor, and then, after turning
on and dropping out in the sixties, became Ram Dass, author of the best-selling
Be Here Now (1971), the axiom of the title from the ancients of the East thereby
becoming a mantra for a generation of flower children. In this inspiring and
eminently readable book, Ram Dass celebrates aging as a time of self- discovery
and of selfless service to others. What could be more appropriate for a man
who has lived so passionately, who has travelled so widely and learned so much
than to share his experience and wisdom with others?
Donoghue, Paul; Siegel, Mary-Ellen. (2000). Sick and Tired of Feeling Sick and
Tired: Living with Invisible Chronic Illness. Second Edition. New edition. W.
W. Norton & Company; ISBN: 0393320650
Book Description: Unlike a leg in a cast, invisible chronic illness (ICI) has
no observable symptoms. Consequently, people who suffer from chronic fatigue,
chronic pain, and many other miseries often endure not only the ailment but
dismissive and negative reactions from others. Since its first publication,
Sick and Tired of Feeling Sick and Tired has offered hope and coping strategies
to thousands of people who suffer from ICI. Paul Donoghue and Mary Siegel teach
their readers how to rethink how they themselves view their illness and how to
communicate with loved ones and doctors in a way that meets their needs. The
authors' understanding makes readers feel they have been heard for the first
time. For this edition, the authors include a new introduction drawing on the
experiences of the many people who have responded to the book and to their
lectures and television appearances. They expand the definition of ICI to
include other ailments such as depression, addiction, and obsessive-compulsive
disorders. They bring the resource material, including Web sites, up to the
present, and they offer fresh insights on four topics that often emerge: guilt,
how ICI affects the family, meaningfulness, and defining acceptance.
Eisenberg, Myron G.; Sutkin, Lafaye C.; Jansen, Mary A. (Eds) (1984). Chronic
Illness and Disability Through the Life Span: Effects on Self and Family.
Springer Pub Co; ISBN: 0826141803.
Considers the normal stages of development using Erich Erikson's model of
developmental life stages. Reviews the impact of chronic illness and disabling
diseases at different life stages. Professional audience.
Falvo, Donna R. (2005). Medical and Psychosocial Aspects of Chronic Illness
and Disability. 3rd edition. ISBN: 0763731668 April 2005 Jones & Bartlett
Publishers, Inc.
From Book News, Inc. Falvo (rehabilitation counselor training, Southern Illinois
U.) provides the basic medical information about chronic conditions which she
believes will be of valuable use to nonmedical rehabilitation professionals
and students. Introductory chapters discuss psychosocial aspects of chronic
illness and the use of adaptive devices before launching into specific discussions
of disorders related to the nervous system, hearing loss, blindness, mental
problems, substance- abuse, the blood and the immune systems, the endocrine
system, musculoskeletal and connective tissues, the cardiovascular system, the
respiratory system, the renal system, burns and facial disfigurement, the gastrointestinal
system, and cancers. A brief final chapter discusses the impact of managed care
on the profession.
Fennell, Patricia. (2001). The Chronic Illness Workbook: Strategies and
Solutions for Taking Back Your Life. ISBN: 1572242647 (To be published:Amazon.com
November 2001) New Harbinger Publications
(Generally speaking, New Harbinger have excellent publications, this should be
a good resource).
Fox, Michael, J. (2002) Lucky Man. Hyperion; ISBN: 0786867647
Amazon.com Review: The same sharp intelligence and self-deprecating wit that made Michael J. Fox a star in the Family Ties TV series and Back to the Future make this a lot punchier than the usual up-from-illness celebrity memoir. Yes, he begins with the first symptoms of Parkinson's disease, the incurable illness that led to his retirement from Spin City (and acting) in 2000. And yes, he assures us he is a better, happier person now than he was before he was diagnosed. In Fox's case, you actually might believe it, because he then cheerfully exposes the insecurities and self-indulgences of his pre-Parkinson's life in a manner that makes them not glamorous but wincingly ordinary and of course very funny. ("As for the question, 'Does it bother you that maybe she just wants to sleep with you because you're a celebrity?' My answer to that one was, 'Ah...nope.'") With a working-class Canadian background, Fox has an unusually detached perspective on the madness of mass-media fame; his description of the tabloid feeding frenzy surrounding his 1988 wedding to Tracy Pollan, for example, manages to be both acid and matter-of-fact. He is frank but not maudlin about his drinking problem, and he refreshingly notes that getting sober did not automatically solve all his other problems. This readable, witty autobiography reminds you why it was generally a pleasure to watch Fox onscreen: he's a nice guy with an edge, and you don't have to feel embarrassed about liking him. --Wendy Smith
Bill: I think this is a very worthwhile book. Fox's experiences ring true and are inspirational yet real.
Goldenberg, Don L. (1996). Chronic Illness and Uncertainty: A Personal and
Professional Guide to Poorly Understood Syndromes, What We Know and Don't Know
About Fibromyalgia. Dorset Press ISBN: 0965610209.
Book Description: Dr. Goldenberg's book offers hope for the million Americans
who suffer from chronic illnesses like fibromyalgia and chronic fatigue
syndrome. It can help both patients and health professionals. It has a
refreshingly sympathetic point of view. "For those of us with chronic illness,
the first step to feeling better is to let go of our need for cause; our need
to blame someone or something for our illness."
Goodheart, Carol D. & Lansing Martha H.(1997). Treating People With Chronic
Disease: A Psychological Guide (Psychologists in Independent Practice Book
Series). American Psychological Association (APA); ISBN: 1557983879
Book News, Inc. Offers practitioners straightforward guidelines for overcoming
the anxieties of the chronically ill and helping people adjust to lives
drastically changed by chronic illness. Each chapter presents a different view
of illness from a different vantage point, reinforcing the authors' holographic
model of treatment. In addition to treatment strategies, the authors address
environment, countertransference issues, and the special needs of children and
families struck by chronic physical disease. Case studies and a guide to
resources are included. Copyright 1999 Book News, Inc., Portland, OR.
Harpham, Wendy Schlessel Happiness in a Storm: Facing Illness and Embracing
Life as a Healthy Survivor. ISBN: 0393060802 September 2005 Publisher: Norton,
W. W. & Company, Inc.
Award-winning author Wendy Schlessel Harpham, M.D., offers her program to getting
good care and finding happiness when you are sick. Having coined the term "Healthy
Survivor" while dealing with her own chronic lymphoma, Harpham encourages
people dealing with cancer, heart disease, diabetes, or any prolonged illness
to simultaneously do all they can to overcome disease and live life to the fullest.
Happiness in a Storm shows you how to set the stage for the miracle of physical
healing by making the best treatment choices for you, nourishing realistic hope,
and taking action. But when it comes right down to it, what good is surviving
if you are never happy? Harpham opens your eyes to the opportunities for happiness
in life despite medical problems and even because of illness. You'll see how
becoming a Healthy Survivor does more than increase your chances of a good outcome:
it frees you to pursue happiness.
Heiss, Gayle (1997). Finding the Way Home: A Compassionate Approach to Illness.
Q E D Press; ISBN: 0936609354
From Booklist: Heiss speaks from her own experience of 12 years duration with
Sjogren's syndrome, an autoimmune connective-tissue disease that causes inflammation
of muscles and joints. During the last eight years, she has been facilitating
support groups for those living with illness. Rather than chronicling illness,
she seeks to clarify the subtle healing process that can take place in a supportive
environment. In the book's three sections--"Living the Question: Illness and
Uncertainty," "On Individual Terms: Responses to Illness," and "In Good Company:
Illness and Relationships" - she examines personal vulnerability to the fact
of physical limitations; acknowledging and grieving over loss; the maze of the
medical care system and its alternatives; and the healing qualities of support
by friends, family, and others suffering illness. Whitney Scott
Jones, Steve (2003) Y: The Descent of Men: Revealing the Mysteries of Maleness
Published by Houghton Mifflin ISBN: 0618139303
From Publishers Weekly
Shriveled, decrepit and of little use except for sex, the Y chromosome is an
apt metaphor for post-modern manhood in this eye-opening exploration of the
biology of maleness. Jones, a geneticist and author of Darwin's Ghost, traces
the development of maleness from its origins as a parasitic stratagem by which
certain microbes forced others to replicate their genes for them, to the dawning
age of cloning, which could, in theory, allow women to dispense with men's reproductive
services altogether. Along the way he investigates the essentials of maleness,
including baldness, the perverse, multi-faceted and never-ending competition
for the favor of choosy females, and the many surgical, chemical and mechanical
reinforcements men call on to stand firm in battle. Writing in a snappy, erudite
style replete with droll euphemisms, Jones takes readers on an engaging tour
of the Darwinian view of sex as the ultimately absurd outcome of natural selection
and clashing reproductive strategies. But he is no essentialist defender of
patriarchy. Indeed, in his treatment males emerge as the weaker sex-a complex
and fragile variation on the sturdy female model, whose extra testosterone makes
them shorter-lived, more prone to disease and suicide, less able than females
to cope in contemporary society and doomed to descent in the coming "age
of women." Men may find this book demoralizing, and Jones's case overstated,
but women may take a certain grim satisfaction from it-and readers of both sexes
will find it very educational.
Kane, Robert L., Reinhard Priester, and Annette M. Totten, Meeting the Challenge
of Chronic Illness, 302 pp, with illus, $55, ISBN 0-8018- 8209-5, Baltimore,
Md, Johns Hopkins University Press, 2005.
The authors carefully substantiate what is known about chronic care, from such
heralded initiatives as disease management and information technology to less
publicized but critical issues, such as the linkage between chronic and long-term
care and the relevance of family to lifestyle changes and treatment adherence.
This book is a must for individuals interested in a reasoned, evidence-based
view of where we stand and what might be realistically achieved from completed
and ongoing chronic care endeavors.. . . . This book, written by experts in
the field, is an outstanding reference. While the title may mislead readers
in the extent to which it sets forth a single sound-bite solution to meeting
the challenge of chronic illness, the authors' conclusions are on
target and deliver on their stated objectives. So many recent chronic care initiatives
seem to gloss over the considerable organizational, financial, and educationalbarriers
posed by our fragmented, employer- based health system. By documenting the complexity
of issues posed by chronic care and outlining the necessity of comprehensive
and coordinated endeavors that span practitioners, payers, and users of health
care, the book provides interested readers with a succinct vehicle for becoming
conversant on this important topic. by: Jennifer L. Wolff, From a book review
in JAMA, April 26, 2006 Vol 295, No. 16 1951-1952.
Kaufman, Miriam. Easy for You to Say: Q and A's for Teens Living with Chronic
Illness or Disabilities. ISBN: 1554070783 August 2005 Publisher: Firefly Books,
Revised and updated edition
Tens of thousands of teens have to deal every day with problems arising from
their chronic conditions or disabilities. They take powerful medications, undergo
frequent, sometimes painful, medical procedures, deal with doctors and other
medical professionals, and endure the embarrassment of appearing different from
others their age. Dr. Miriam Kaufman addresses these challenges with passion
and sensitivity, and relates to teens in an approachable way. Topics include:
Anemia, Cancer, Cerebral Palsy, Crohn's Disease, Deafness, Diabetes, Head Injury,
Heart Disease, Hemophilia, HIV, Lupus, Muscular Dystrophy, Sickle Cell Anemia,
Seizures, Spina Bifida, Spinal Cord Injuries, Thyroid Disease
Written in clear, accessible language and in an easy-to-read Q&A format,
Easy for You to Say covers important topics that range from family relationships,
to friends and dating, to doctors and medical issues.
Kilpatrick, James R. (2000). Coping with a Myositis Disease. Kilpatrick Publishing
Company; ISBN: 0970167105.
First-person accounts from people with myositis disorders.
Landay, David S. (2000). Be Prepared: The Complete Financial, Legal, and
Practical Guide for Living With a Life-Challenging Condition. Griffin Trade
Paperback; ISBN: 0312253745
Amazon.com: Coming off the deaths of his father following a bout with lung
cancer, a loved one who was diagnosed with leukemia, and a number of friends
who contracted HIV, attorney David S. Landay wrote Be Prepared for people
facing life-challenging conditions. The book is organized and presented in a
tone Landay says is necessary for anyone facing an uncertain future. As such,
he repeatedly emphasizes a need to both expect the best and prepare for the
worst. He covers a variety of topics, including drugs and treatments, nutrition
and exercise, taxes, new uses of existing assets, and estate planning. Being
proactive is a consistent theme and is particularly relevant in areas such as
medical power of attorney, living wills, do-not-resuscitate orders, durable
power of attorney, and preneed decisions about children. Of course, when it
comes to an area such as money, it's tempting to assume that much of this
information is already presented in other reputable books on financial planning
that cover areas such as life, disability, and health insurance. But Landay
makes a point of noting that some of his concepts for people with
life-challenging conditions appear to fly against conventional wisdom. He calls
attention to those concepts with a special symbol and refers to them as CASH:
Conventional Advice Switched on its Head. (Examples: As long as you have a
taxable income, it is advisable to continue to invest in retirement accounts;
even if you don't have health insurance, there are still ways to get it;
disability does not generally happen overnight; Medicaid covers more long-term
care than Medicare.) And the book is certainly unique in its compilation of
advice in a variety of areas (medical, financial, and legal), all aimed at
informing people facing critical decisions. In the end, it's hard to know if Be
Prepared is a truly proactive tool, or the type of resource people won't turn
to until a crisis strikes. In that sense, it's much like earthquake preparation
guides that go unnoticed until the big one hits. Nevertheless, Landay's effort
is a sobering reminder both that poor health can send our lives spiraling out
of control and that a little planning ahead can bring pride, dignity, and a
sense of power to an otherwise compromised life. John Russell
Lemaistre, Joann (1995). After the Diagnosis: From Crisis to Personal Renewal
for Patients With Chronic Illness. Ulysses Pr; ISBN: 1569750467
JoAnn LeMaistre is a clinical psychologist who specializes her practice in
dealing with patients who have a chronic medical illness or disability. She
herself lives with MS, and bases the foundation of this book from both a
personal and professional standpoint.
Lewis, Kathleen. (2000). Celebrate Life: New Attitudes for Living with Chronic
Illness. ISBN: 0912423242.
Kathleen Lewis has been diagnosed with lupus, fibromyalgia, and osteoarthritis.
A medical psychotherapist and licensed counselor, she celebrates her life with
chronic illness and helps others do the same through her counseling services
and writing.
Livneh, Hanoch, and Antonak, Richard F. (1997). Psychosocial Adaptation to
Chronic Illness and Disability. Aspen Publishers, Inc.; ISBN: 0834209675
From Book News, Inc.
Explores how people with various chronic illnesses and disabilities are
affected by their conditions, how they react to and cope with them, and what
factors are linked to successful psychological adaptation. After reviewing
theory, methods, and measures of adaptation, focuses on various traumatic or
sudden-onset disabilities, disease-related health disorders, sensory
impairments, and neurological and neuromuscular disabilities. Concludes with
applications and research recommendations.
McLeod, Witrogen, Beth. (2000) Caregiving: A Spiritual Journey of Love, Loss
and Renewal. John Wiley & Sons; ISBN: 0471392170
Book Description: "A fine source to help bring out the helping heart in all
of us."--Mitch Albom, author of Tuesdays with MorrieAs featured on the Today
ShowWhether it involves caring for an aging parent, an ill spouse or partner,
or a disabled child, caregiving takes us into a new reality. In this powerful,
unique book, Beth Witrogen McLeod leads readers through the caregiving journey
with unflinching authority and compassion. A rare blend of powerful storytelling
and practical information, Caregiving presents advice from leaders in the fields
of aging, medicine, finance, and spirituality and explores medical and financial
problems as well as such issues as depression, stress, housing, home care, and
end-of-life concerns. McLeod also draws on the wisdom of Buddhism, Judaism,
Christianity, Islam, and shamanism, and on the writings of current and past
spiritual figures. Beth Witrogen McLeod (Antioch, CA) is a prizewinning journalist
who has won the National Hospice Organization President's Award, the United
Way Health Network Award, and others. She regularly lectures nationwide.
Meyer, Maria, M.; Derr, Paula; Hatfield, Mark. (1998). The Comfort of Home: An
Illustrated Step-By-Step Guide for Caregivers. CareTrust Publications LLC;
ISBN: 0966476700.
1999 Benjamin Franklin Award: The Publishers Marketing Association (PMA) has
awarded The Comfort of Home its prestigious 1999 BENJAMIN FRANKLIN AWARD in the
HEALTH CATEGORY. The judges describe this exceptional caregiving guide as
"...Overall a beautifully designed book with very useful, practical information
for caregivers...an attractive, well-put together package with distinctive
chapter headings, clear organization of material throughout, and imaginative
use of typography / layout."
Mitsumoto, Hiroshi & Munsat, Theodore L. (Eds.). (2001). Amyotrophic Lateral
Sclerosis: A Guide for Patients and Families, 2nd Edition, Demos Medical
Publishing; ISBN: 1888799285.
From Book News, Inc. This new edition of a 1992 guide to the management of Lou
Gehrig's focuses on helping family members understand and manage the disease.
After a technical overview of the medical aspects of the disease, sections deal
with rehabilitative management, issues of day-to-day living with the disease,
advanced disease and end-of-life issues, and organizations and resources
available to families with an afflicted member. Medical, technological, legal,
ethical, nutritional, cultural, social, spiritual, and institutional aspects
are covered. Book News, Inc. Portland, OR
Pitzele, Sefra Kobrin (1986). We Are Not Alone : Learning to Live With Chronic
Illness. Workman Publishing Company; ISBN: 0894801392
Ingram: The first generalized, comprehensive guide to coping with chronic
illness, for the 50 million Americans who suffer from a chronic illness,
including listings of support groups and helpful organizations.
Potok, Andrew, 2002. A Matter of Dignity: Changing the Lives of the Disabled.
Bantam Doubleday Dell Pub; ISBN: 0553802151
From Publishers Weekly: Insight and nuance underlie much of this investigation
into the situation of disabled Americans today. Potok (Ordinary Daylight), who
has the degenerative eye disease retinitis pigmentosa, shapes his informative
and wittily written survey around a series of 13 interview/profiles of
disability activists of various backgrounds and interests: e.g., lawyer Chai
Feldblum, who pioneered AIDS and race-based civil rights legislation and now
does disability law; Connie Tomaino, who works for Oliver Sacks and studies
"neurological aspects of music"; Dave Loney, who makes prostheses. While
careful not to present a completely cheery portrait of the world of the
disabled, offering the history of eugenics in U.S. thought and law, and
accounts of guide dogs who can "smell, shed, get ill, [or] revert to deeply
ingrained beastly behavior," Potok discusses such positive developments as the
new academic Society for Disability Studies, the ever evolving politics of the
Americans with Disability Act, and the invention of the "talking computer"
program JAWS (Job Accessibility with Speech). Covering medical, legal and
psychological issues in depth and with intellectual vigor, the most provocative
of Potok's work is his examination "about our feelings regarding wholeness,
beauty, and ugliness [and] about the state called normalcy," making the book
less about changing the world of the disabled than about in re-imagining the
world in which we all live. (Feb. 4) Forecast: Potok's broad-spectrum,
people-based approach works terrifically to draw readers into the issues, and
can be recommended especially to those who have endured any sort of recent
health or life setback. Anyone interested in the intersection of law and
activism will find points of interest.
Ray, Catherine, M. (1997) I 'm With You Now: A Guide Through Incurable Illness
for Patients, Family and Friends. Bantam Books; ISBN: 0553378015.
Book Description: Relying on more than twenty years of hospice experience, M.
Catherine Ray explains how to communicate with loved ones in a hospice
environment. Of the many books on death and dying, I'm With You Now provides
the most practical advice and useful guidelines for making a loved one's final
journey more comfortable, more caring, and more loving.
Register, Cheri. (1999). The Chronic Illness Experience: Embracing the
Imperfect Life. Hazelden Information Education; ISBN: 1568383460
Book Description This penetrating and inspiring book probes the psychological
and emotional aspects of chronic illness and reveals how those who endure adversity
ultimately achieve meaningful live. It eloquently demonstrates that happiness
and fulfillment are not exclusive preserves of the healthy. A revision and republication
of the author's earlier book, Living with Chronic Illness.
Rhodes, Ann. (1998). Take Care: Help and Advice for Caregivers. Harpercollins
Canada; ISBN: 0006384919.
Book Description: Taking care of an aging loved one involves making some of
life's most difficult decisions. There are many practical issues to consider
and it's sometimes hard to know the best course of action. Now, in Take Care,
Ann Rhodes provides clear and practical information to help you make the right
decisions. Caregivers will find detailed information on health and hygiene,
exercise and stress management, lifts and other assistive devices, and on how
to obtain many kinds of professional assistance. Take Care serves as a guide
to making the right caregiving decisions and as a source of information for
caregivers through the various stages of eldercare.
Selak, Joy H. You Don't Look Sick!: Living Well with Invisible Chronic Illness.
ISBN: 0789024497 April 2005 Publisher: Haworth Press, Incorporated
You Don't LOOK Sick!: Living Well with Invisible Chronic Illness chronicles
a patient's true-life accounts and her physician's compassionate commentary
as they take a journey through the three stages of chronic illness-Getting Sick,
Being Sick, and Living Well. This resource helps you focus on building a meaningful
life that contains illness as opposed to a life of frustration and fear. Designed
for patients in the beginning stages of chronic illness, this book will also
be illuminating for caregivers and loved ones.
Silver, Julie K., & Halstead, Lauro S. (2001). Post_Polio Syndrome: A Guide
for Polio Survivors and Their Families. Yale Univ Pr; ISBN: 0300088078
From Booklist: Silver first learned about polio because several family members
contracted it in the epidemics of the 1930s and 1940s. Her subsequent clinical
and research experience as a physician has benefited many polio patients when
they later acquired postpolio syndrome (PPS). A major problem with any syndrome
is that there is usually no specific test that will identify it unequivocally.
Some confusion enters the picture for PPS patients, since not all of them recall
having had paralytic polio; indeed, in some cases neither doctor or patient
was aware that the latter's disease was polio. Silver describes PPS, shows how
it is diagnosed, discusses various treatments for it, and stresses that choosing
an experienced and open-minded physician is vital to good treatment. Citing
many case histories to make her points, she tackles various controversies and
offers much practical advice about protecting and strengthening parts of the
body, overcoming pain, and coping with fatigue, cold tolerance, and depression.
William Beatty.
Simmons, Phillip. (2002). Learning to Fall : The Blessings of an Imperfect Life. Bantam Doubleday Dell Pub (Trd); ISBN: 0553802666.
From Publishers Weekly: Living fully in the face of a debilitating fatal illness is the challenge Simmons, then an associate professor of English at Lake Forest College in Illinois, faced when he was told in 1993 he had ALS (Lou Gehrig's disease) and had less than five years to live. As his illness progressed, a wheelchair-bound Simmons moved with his wife and two children to southern New Hampshire, near the rugged mountains he once had climbed. Writing in his cabin in view of an old dump, Simmons describes the wonders of nature remembered and still visible from his abode. He tells of his search for life's meaning in a variety of religious and secular texts, among them the story of Jesus, the philosophy of Zen, Sufi and Buddhist masters, medieval Christian mystics, Emerson's essays and the poetry of Yeats. In a wry disclaimer, Simmons notes that learning to live richly in the face of loss is a highly individual undertaking, and adds, "I'm not in the business of issuing directives, offering tips, imposing lists of spiritual dos and don'ts, or providing neat, comforting formulas." Indeed, his little book of thoughtful essays offers no easy solutions to dealing with suffering and sorrow, but it does chronicle how the experience of living at the edge can become an extraordinary connection to the eternal.
Singer, Alesia T., Singer, Alesia T. Barrett (1999). Coping With Your Childs
Chronic Illness Robert D. Reed Publishers; ISBN: 1885003145
From Library Journal: Psychologist Singer has written an accessible introductory
general guide for caregivers of chronically ill children. Specific diseases
are not addressed. The book centers on coping with the shock of diagnosis; educational
resources, including the child's physician, library, support groups, and Internet
sites (URLs for authoritative web sites are included); advocacy for the child,
parents, and other family members with healthcare and school professionals;
how to explain illness and treatment to children in age-specific terms; and
handling stress, burnout, and depression in the child, parents, or siblings.
Reassuring and helpful, this small volume is a first step for parents of newly
diagnosed children, one of few such titles (see also Suzanne Levert's When Your
Child Has a Chronic Illness, Dell, 1995). As a companion book, Robin P. Monroe's
When Will I Feel Better? Understanding Chronic Illness (Concordia Pub., 1998)
offers similar information in terms preschoolers can understand. Recommended.
Starlanyl, Devin J., Copeland, Mary Ellen. (2001). Fibromyalgia and Chronic
Myofascial Pain: A Survival Manual. (2nd Edition) New Harbinger Pub; ISBN:
1572242388
(This book has become a vital title in Fibromyalgia and contains helpful tips
that apply to many people with muscle related disorders).
Vanier, Jean (1999) Becoming Human. Paulist Press; ISBN: 0809139006
Book Description: In this provocative work, Jean Vanier shares his profoundly
human vision for creating a common good that radically changes our communities,
our relationships, and ourselves. He proposes that by opening ourselves to
outsiders, those that we perceive as weak, different, or inferior, we can
achieve pure personal and societal freedom. Our society shuns weakness and
glorifies strength. By embracing weakness, however, we learn new ways of living
and discover greater compassion, trust and understanding. This spirit of
inclusion has extraordinary implications for the we live our lives and build
our communities.
Weiner, Jonathan His Brother's Keeper: A Story from the Edge of Medicine.ISBN:
006001007X March 2004 Publisher: HarperCollins Publishers
His Brother's Keeper is a book about the epitome of the new biology: regenerative
medicine. It tells the story of the epic line of cell research that is right
now coming together with discoveries that take us across the borders of biology
into some of its most fascinating and bewildering frontiers, including cloning,
genomic, molecular genetics, genetic engineering, and embryonic stem cells.
This is a book that explores the moment when life science in the pursuit of
medicine achieves the power to direct new steps in the evolution of the human
body and spirit.
The story is told through the lives of two amazing brothers: Stephen Heywood,
a carpenter, who discovers he has A.L.S., a gradual, mysterious deterioration
of the nervous system, also known as Lou Gehrig's disease, and Jamie Heywood,
an engineer who quits his lucrative job to start a foundation where he obsessively
works with cutting-edge scientists in a race to find a cure. Through this remarkable
journey with a family in crisis, we are given an overview of the various gene
therapies that are still on the horizon, capable of potentially bringing back
those suffering from such neurological diseases as A.L.S., Alzheimer's,
Parkinson's, and other various disorders of the brain.
Through the translucent prose of Jonathan Weiner, we experience not only the
passion and torment of the Heywoods, but we learn a vast amount about the groundbreaking
technologies that may one day save our own lives and certainly change the way
we live them.
Wells, Susan Milstrey. (2000). A Delicate Balance: Living Successfully with
Chronic Illness. Perseus Books; ISBN: 0738203238
From Book News, Inc. The author follows 21 individuals, including herself, who
suffer from chronic and largely invisible illnesses. She addresses such questions
as finding a comprehensive diagnosis, locating a capable and caring health care
provider, considering traditional or alternative treatments, making sense of
powerful emotions, strengthening relationships with family and friends, making
significant career decisions, and reflecting on how illness changes one's overall
life.
This information addresses some fundamental coping issues. I have copied it
without permission for educational purposes because I think it is an excellent
overview.
Based on: http://seniors-site.com/coping/chronic.html
Original source: Coping with Parkinson's Disease, article by: Cheryl H. Waters,
M. D., and William G. Crary, Ph. D., University of Southern California, National
Parkinson Foundation Clinic, 1510 San Pablo, Suite 615, Los Angeles, CA 90004.
(Not on-line).
Chronic illness may involve repeated episodes of deterioration in which the patient confronts and adjusts to the losses imposed. Example of these losses can include mobility, balance, sexuality, and cognitive function. After working through the normal response to loss, many people are able to find meaning despite being in a physical condition which, prior to the onset of their illness, they would have deemed intolerable and unacceptable. Such patients handle the burden of chronic illness with amazing fortitude and are able to find meaning and value even when extremely disabled.
Individuals who are able to successfully cope with chronic illness share certain
characteristics:
-They generally have good self-esteem and a realistic understanding of their
own strengths and weaknesses.
-They retain an ability to define personal goals and to find gratification in
their accomplishments.
-They retain some sense of control over their own destiny - a belief that they
can still influence their world, including the course or symptoms of their illness.
-They are able to maintain hope.
With chronic illness, hope shifts from cure to coping. If we are chronically
ill, besides a cure, we can hope for:
-a reasonable quality of life,
-diminished discomfort,
-maintenance of dignity and a sense of self-worth, and
-retention and enrichment of our loving relationships.
Those who cope successfully typically have strong support from family or "significant others;" they have open communication with those who care and confidence in their health care personnel.
SUGGESTIONS FOR PATIENTS
1). Assume responsibility for your own health care. Get as much information from as many sources as you can. Learn enough about your condition so that you know something about its treatment, and what you can and can't do to help yourself. Learn about your medications and recognize the side effects you experience. Try to be as compliant as possible but accept that despite the best of intentions some minor deviations can occur.
2). Try to define what you have lost. As you do this, you may be able to develop alternate ways to regain, or achieve, at least some of what you have lost. For example, if you have difficulty with balance, work with your physiotherapist to find a walking aid to help you compensate for the loss of balance.
3). Recognize that behavior that is appropriate for acute illness may not be adaptive when one is chronically ill. Avoid being overly passive or dependent on others as you might be with an acute illness.
4). Deal with the emotional realities. Chronic illness is unfair. It is sad to lose any amount of freedom, our confidence in our health and future, or our physical abilities. It is natural to weep, feel angry, wonder "why me?" and feel anxiety about an uncertain future. These are painful but normal emotions that generally will fade over time. They may be experienced a number of times, as new symptoms develop, or as the illness deprives us of some valued ability. Most people will, after a period of time, come to terms with their new reality and will not become depressed. If necessary, however, seek help in dealing with these emotions and go forward with your life.
5). If chronically ill, monitor your thinking. Try to minimize negative or anxiety-producing thinking. Some chronically ill individuals can develop interpretations of events that are unduly negative or anxiety provoking, such as "I can't do it... It's hopeless... I'm defeated" (depressive thoughts), or "I can't stand it... I never know what's happening... I'm hopeless" (anxiety-producing thoughts). Such automatic thoughts only increase the burden under which we function. Find a balance of coping styles.
6). Identify and avoid vicious cycles. For example, chronic fatigue may make a person feel discouraged and being discouraged may contribute to feelings of uselessness. These, in turn, can contribute to a sense of fatigue, which then increases the feelings of being useless and unhappy. This is a classic vicious cycle.
7). Try to accept the way things are with you at this moment in time. This does not require an admission that you prefer to be ill, but is simply an acknowledgment of your current situation. With such acceptance comes an ability to plan realistically. Do not electively take on additional burdens or responsibilities without carefully considering the options.
8). Be positive. Focus on what you can do rather than on what you can't do. Remember that you are a competent individual with many talents and attributes that are inherently yours and will be yours forever. Allow them to flourish.
SUGGESTIONS FOR SIGNIFICANT OTHERS
1). Recognize that you cannot control or be responsible for the behavior of anyone but yourself. Your task is to try to maximize the likelihood that the patient will behave in an adaptive, realistic manner.
2). Remember that we don't know anyone else's internal reality. We only know their verbal and nonverbal behaviors. We need to avoid negative self-fulfilling prophesies about the patient. Check your assumptions. Are you sure they can't bathe themselves, do simple housework, go outside for a walk, take a vacation, or hold you close?
3). As with the patient, it is important to become an expert on the disease and its treatment. The more you know, the more you can help the patient make the right decisions about his/her care, and the more you can monitor your own expectations.
4). An important aspect of living with someone with a chronic illness is understanding and accepting your own limitations. Even the most loving and attentive people need time for themselves, whether it's to rest, to take care of personal needs, or to be pampered. Give yourself permission to continue to live your life.
5). Support realistic efforts by the patient to be more independent. Give the person permission to try, even if they fail. Active coping inevitably involves some attempts that don't succeed. However, "errors of commission," which is to say, trying and failing, are much healthier for the chronically ill than "errors of omission," or making no effort at all.
6). Try not to inflict guilt, rejection, or frustration onto the patient. The illness imposes considerable frustration on both the patient and their loved ones. Recognize this, and try to deal with it in ways that do not increase it.
7). Monitor your own grief. As your loved one experiences losses (of independence, health, future) you will experience some normal bereavement. You, too, are losing something of value and will grieve. Recognize that this is normal and try not to let it unduly influence your relationship with your loved one.
We hope that these pointers are helpful with the enormous challenge that you and your loved one face. We do want to emphasize that it is important to view chronic illness holistically with the understanding that emotional and psychological support can be just as important as medical treatment.
-There are different kinds of stress. There is stress that we feel and this has a huge impact on our health in general, and in particular, it has a lot to do with the physical systems that interact with our stress system -- our endocrine system. So, the more stress we feel, the more our stress chemicals flow and the more health effects they have. There is no question that stress interacts with many illnesses and that low stress and positive coping is suggested in serious illness.
Earle, R. & Davidson, J. (2000). The Complete Idiot's Guide to Managing Stress for Canadians. Toronto: Prentice Hall Canada (Alpha Books).
Elkin A. (1999). Stress Management for Dummies. Foster City, CA: IDG Books.
END
Mail Bill: btillier@shaw.ca
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