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Coping with chronic, rare, and invisible diseases and disorders• Helpful websites and other resources
• Managing pain • Memoirs of coping with chronic, rare, or invisible diseases or special health problems • Books about how to cope with chronic or invisible illnesses ADHD, ADD, and other problems with attention ALS (Lou Gehrig's disease, Amyotrophic lateral sclerosis) Alzheimer's Anxiety Arthritis and autoimmune diseases Autism spectrum disorders (including Asperger's Syndrome) Back pain, chronic Dementia, non-Alzheimer's (including frontotemporal dementia, or FTD) Diabetes Fibromyalgia (FMS) Heart problems (cardiac disease) Late-stage Lyme disease (also called Chronic Lyme disease and late-stage neuroborreliosis) Mental illness and mental health (particularly bipolar disorder, depression, OCD, schizophrenia) Migraine Parkinson's disease Post-traumatic stress disorder (PTSD) Sleep apnea Stuttering (Stammering) Stroke Traumatic brain injury (TBI) Because I write about illness and medical research and the professionals who try to help those with medical problems, I find myself wanting to recommend links that don't really fit into the other categories on this site, or even into the concept of the site. And yet, those who come here are often grappling with the problems of chronic and/or invisible illnesses, which are not apparent to others, or rare illnesses or conditions, which are often difficult even to diagnose, much less treat. So I am going to add this category and hope that you will tell me about useful sites to link to -- so that you all can help each other. With invisible, or concealed, chronic illnesses (ICI or CCI), the kind of mutual support available directly or indirectly through the Internet is particularly important.
What are invisible illnesses? Illnesses that aren't apparent, so you expect the people who have them to be functioning normally--except they can't, because something about their illness limits them, and it may well be fatigue. Invisible chronic illnesses include anxiety and panic disorders, autism, bipolar disorder (manic depression), chronic fatigue syndrome, depression, digestive disorders such as Crohn's disease, fibromyalgia, Gulf War Syndrome, irritable bowel syndrome (IBS) lupus, migraine headaches, multiple chemical sensitivity, post-traumatic stress disorder (PTSD), rheumatoid arthritis, and various other health problems that cause multiple hospitalizations and are often characterized by waxing and waning symptoms. I have had time to provide coverage of only some of these diseases; I will do more (and organize the links better) as time and energy allow. Meanwhile, I hope some of this is helpful! ADHD, ADD, and other problems with inconsistent (sometimes hyperfocused) attention: • Listen or read (NPR, Tell Me More): Tackling Motherhood...And ADHD. As more children are diagnosed with Attention Deficit Hyperactivity Disorder, parents are discovering they have it too. In the U.S., women have become the fastest growing group to be prescribed ADHD medication. In this parenting segment, host Michel Martin speaks with Jennifer Brown and Michelle Suppers — "moms with ADHD" and journalist Brigid Schulte, who wrote about the issue for the Washington Post Magazine. • Listen or read (NPR, Tell Me More): Listeners Relate To Moms Juggling Kids And ADHD. Michel Martin and NPR's Tanya Ballard Brown comb through listener feedback to conversations on Tell Me More's segments about "enhanced interrogation techniques" and parents who manage Attention Deficit Hyperactivity Disorder • Listen or Read (NPR): Dealing with ADHD as an Adult (Neal Conan, Talk of the Nation, and guests Robert Jergen, Edward Hallowell, and Patricia Quinn) • TotallyADD.com (many tools, tips, resources, articles) • Driven To Distraction: Recognizing and Coping with Attention Deficit Disorder from Childhood Through Adulthood by Edward M. Hallowell and John J. Ratey (or, for those who have trouble reading, the small-byte-sized Answers to Distraction. Both available as books on tape. Read an excerpt from their book Delivered from Distraction: Getting the Most out of Life with Attention Deficit Disorder. The authors, both professionals, also have ADD. • by Diane M. Kennedy and Rebecca S. Banks with Temple Grandin • The Little Monster: Growing Up With ADHD by Robert Jergen. (Read the preface) • One Boy's Struggle: A Memoir: Surviving Life with Undiagnosed ADD by Bryan L. Hutchinson • Untangling the Myths About Attention Disorder (Perri Klass, Health, NY Times, 12-13-10) • ADHD Affects Women Differently: What to Look For, How to Fix It (Health.com) • Is It Really ADHD? Other Conditions with Similar Symptoms • Get the ADHD Facts You Need to Help Your Child Top 11 ADHD Myths and Facts (Kate Taylor, Lifescript, 11-20-12) • Just Because It Looks Like ADHD Symptoms, Doesn't Mean It's ADHD )(Robin Aronson, Babble, 12-27-10) • Who Might Be Included on an ADHD Management Team? (ADHD & You) Accord Alliance
Promotes comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by disorders of sex development (DSD, which includes some conditions referred to as "intersex") Addiction
• Two Acres of Hope for Recovering Addicts (Cara Buckley, NY Times, 8-14-09) • Gordon, Barbara. I’m Dancing as Fast as I Can (on her addiction to prescription drugs) • Scheff, David. Beautiful Boy: A Father's Journey Through His Son's Addiction (chronicling a precocious teenager's spiral downward from abuse of mind- and mood-altering drugs to meth addiction) • Addiction Recovery Basics (more to come) After Surgery to Slim Down, the Bills Can Pile Up (Lesley Alderman, NYTimes, 12-31-10). After bariatric surgery, high co-payments, nutritional and behavioral counseling and cosmetic surgery can easily add up to thousands of dollars, mostly out of patients’ pockets.
ALS (Lou Gehrig's disease, Amyotrophic lateral sclerosis)
• About ALS (ALS Association) • MDA ALS Caregiver's Guide • The Good Short Life by Dudley Clendinen (NYTimes, 7-9-11). Living with Lou Gehrig's disease is about life, when you know there's not much left. And Writer Dudley Clendinen has chosen not to go to the great expense and limited potential of extending his life--but to enjoy what he can of it, while he can. He learned he had the disease when he was 66, and Maryland Morning, an NPR news station, has been airing conversations with him about how he and his daughter Whitney have been dealing with the disease and its implications. Listen to the podcasts • I Remember Running: The Year I Got Everything I Ever Wanted -- and ALS (Darcy Wakefield's memoir-- a good voice, and good storytelling) • A.L.S. Rewrites a Retiree's Dream: Loss of Speech Evokes the Voice of a Writer (Peter Applebome, NY Times, 3-6-11). • Night (Tony Judt, NY Review of Books, 1-14-10). "In effect, ALS constitutes progressive imprisonment without parole....Imagine for a moment that you had been obliged instead to lie absolutely motionless on your back—by no means the best sleeping position, but the only one I can tolerate—for seven unbroken hours and constrained to come up with ways to render this Calvary tolerable not just for one night but for the rest of your life." A powerful depiction of what, physically, it is like to lose the use of the body while you still have full use of your mind (in his case, one of the finest minds of our time), by the author of The Memory Chalet , a memoir. • An Open Letter About ALS (Tony Judt, NY Review of Books) • Tales from the Bed: A Memoir (Jenifer Estess as told to Valerie Estees, foreword by Katie Couric) ALZHEIMER'S Don't lose your sense of humor. Start here: Where's Buddy? (Beth Rubin visits her uncle, posted on her blog, Beth Bad and Beyond) Coping and Caregiving, How To and Resources for Alzheimer's • Alzheimer’s and Dementia Caregiver Center (Alzheimer's Association) • Alzheimer's Association (800-272-3900) • Alzheimer’s Association online communities (share experiences, advice with those who have Alzheimer’s or care for someone who does) • Alzheimer’s and Dementia Testing for Earlier Diagnosis Alzheimer's Association Research Center • Treatment horizon (Alzheimer's Association Research Center) • Alzheimer List (an online discussion group) • Find an Alzheimer's care facility (AgingCare.com database, searchable by state, for USA) • Alzheimer’s Caregiver Guide (National Institute on Aging) • Alzheimer’s caregivers guide (many tips also helpful for people with other forms of dementia or traumatic brain injury) • Alzheimer's Facts and Figures (Alzheimer's Association) • 25 Best Alzheimer's and Dementia Blogs of 2012 (Tracy Rosecrans, HealthLine, 7-17-12) • Alzheimer's ID bracelets (Medic Alert + Safe Return) • Alzheimer's Project shown on HBO (this series, appearing on HBO in May 2009, can also be viewed free online at this link). • Alzheimer's Reading Room (caregiver Bob DeMarco's site, rich in current information, research, caregiver tools, advice, and insight into Alzheimer's disease) • Alzheimer's, resources for caregivers (David Shenk's site for The Forgetting) • Alzheimer's support groups (AARP) • Best Friends Approach • Beyond Forgetting: Poetry and Prose about Alzheimer's Disease • Camp For Alzheimer's Patients Isn't About Memories (read or listen to Deborah Franklin, NPR, 9-6-10) • Camps for Caring (Family Caregiver Alliance) • Caregivers, caregiving, and preventing or minimizing caregiver burnout (Scroll down to section on Alzheimer's, under Helpful Links) • Caregiving 101 (Debbie Newsham's blog on trying to stay positive while caring for her father, who has Alzheimer's disease) • Dementia Care Central (dealing with various forms of dementia, including Alzheimer's disease, vascular dementia, Lewy body dementia, and frontotemporal dementia or FTD) • How Exercise Might Help Keep Alzheimer's At Bay (read or listen to Jon Hamilton, NPR 4-29-10) • Music Can Help Families Living With Alzheimer's (Jess Ludwig, AARP, 12-21-10) • Do You Know Me? It's Still Me (?Sue Hessel, blog of Association of Personal Historians, on helping dementia patients find and save their stories--and on helping caregivers see them as individuals and not their disease) • My Father's Brain (abstract of Jonathan Franzen's New Yorker story about his father and Alzheimer's disease, September 10, 2001) • Test Your Memory for Alzheimer's (5 Best Self Assessment Tests) (free self assessment tests for Alzheimer's, dementia, and mild cognitive impairment, Alzheimer's Reading Room) • Understanding Alzheimer's (CBC News, 9-21-09) • Validation Training Institute (to learn a method for communicating with very old people who are diagnosed with dementia) Books • DeBaggio, Thomas. Losing My Mind: An Intimate Look at Life with Alzheimer's (the early memories and the daily struggle of a man coming to terms with a progressively debilitating illness) • Jan's Story: Love lost to the long goodbye of Alzheimer's by Barry Petersen • Gillies, Andrea. Keeper: One House, Three Generations, and a Journey into Alzheimer's (reviewed in the NY Times by Paula Span). • Hoblitzelle, Olivia Ames. The Majesty of Your Loving; A Couple's Journey Through Alzheimer's. Practical and spiritual wisdom about facing (together) a disease that changes who a person is or seems to be. • Wilson, A.N. Iris Murdoch As I Knew Her. A literary memoir that portrays "Murdoch as novelist & thinker, not Alzheimers poster child," as one reviewer put it, by contrast with the books by Murdoch's husband, John Bayley, especially Elegy for Iris. • Waiting for the Forgetting to Begin (Nancy Sterns Bercaw, author of the book Brain in a Jar: A Daughter’s Journey Through Her Father’s Memory , to be published April 2013). "Using the jarred brain as a teaching tool, my dad showed my 8-year-old self the difference between frontal and temporal lobes. He also pointed out how brains with Alzheimer’s disease become smaller, and how wide grooves develop in the cerebral cortex. But only after his death — and my mother’s confession about whose brain occupied that jar — did I figure out that my father was quite literally demonstrating how this disease runs through our heads." • Keeper: One House, Three Generations, and a Journey into Alzheimer's by Andrea Gillies (reviewed in the NY Times by Paula Span) • Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste • The Long Hello ~ The Other Side of Alzheimer's by Cathie Borrie • Losing My Mind: An Intimate Look at Life with Alzheimer's by Thomas DeBaggio (the early memories and the daily struggle of a man coming to terms with a progressively debilitating illness) • Still Alice by Lisa Genova (a realistic novel--see review in AARP magazine. • The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss by Nancy L. Mace and Peter V. Rabins Research and Explanations (Alzheimer’s) • Alzheimer's Association • Alzheimer Research Forum (AlzForum) • Alzheimer's tests using pen and paper still the best (Shari Roan, Los Angeles Times, Booster Shots blog 9-6-11) • Evidence Lacking To Support Alzheimer's Prevention (read or listen to Rose Raymond, NPR 4-28-10) • The Johns Hopkins Guide to Understanding Dementia (free, after you sign up) • Mental Stimulation Postpones, Then Speeds Dementia (read or listen to Allison Aubrey, NPR, 9-4-10) • Remembered: The Alzheimer's Photography Project (for people with Alzheimer's the past becomes part of the present -- it inserts itself and becomes part of their lives -- Gregg Segal, for AARP) • Path Is Found for the Spread of Alzheimer’s (Gina Kolata, NY Times, 2-1-12). Two studies in mice show Alzheimer's disease spreading from brain cell to brain cell through a distorted protein called tau. "The question of which hypothesis was correct — tau spreading cell to cell, or a bad neighborhood in the brain and cells with different vulnerabilities to it — remained unanswerable." • Tracing the Path from DNA to Dementia (Irene Wielawski, NY Times) Ana's Story (Thomas Curwen's two-part series about how facial reconstruction may change the life of Ana Rodarte, whose life has been defined by facial disfigurement caused by neurofibromatosis, LA Times, 4-4-09)
Androgen Insensitivity Syndrome Support Group (AISSG) (UK). Information and support for XY women, including links to related sites. Anxiety • Evaluating Anxiety From an Early Age Irene Wielawski interviews Daniel Pine about evaluating generalized anxiety disorder from an early age, NY Times, Expert Q&A, 7-11-08) • Shawn, Allen. Wish I Could Be There: Notes from a Phobic Life — part memoir, part explanation, a beautifully written and fascinating account of Shawn's own anxiety and agoraphobia, and a fine summary of what is known about how we form and can learn to manage anxiety and phobias. • Anxiety Disorders (NIMH) • Anxety, Panic & Phobia Center (Psych Central) http://psychcentral.com/disorders/anxiety/ • The Linden Method (for dealing with anxiety, panic attacks, OCD, and phobias) • Anxiety, the excellent NY Times Opinionator series, exploring "how we navigate the worried mind, through essay, art and memoir," including the following: ~A Daughter's Separation Anxiety (Nicole Bokat, Opinionator, NY Times, 4-15-13). "When my father was alive, our relationship was virtually symbiotic. After he was gone, I realized he’d been my antidepressant." ~The Hand That Feeds Us (Sara Hope Anderson, Opinionator, NY Times, 4-20-13). "I was sure the loss of my job was just an unpleasant drizzle on my career parade. I was wrong." ~ For the Anxious, Avoidance Can Have an Upside (Joseph Ledoux, Opinionator, NY Times, 4-7-13) ~A Day in the Life (Adane Byron, Opinionator, NY Times, 3-25-13) Social anxiety. "Getting out of my apartment to go to class should have been simple. But the voices in my head wouldn't let me go quietly." ~Up Here on This Island (Mark Dow, Opinionator, NY Times, 3-13-13) Lessons from a 12-year-old boy who took in the world by his own measure. ~The Last All-Nighter (Kate Miller, Opinionator, NY Times, 3-4-13) " I thought it would fast-track me to adulthood, but what Adderall gave me was nothing compared to what it took away." Arthritis and autoimmune diseases• Arthritis Foundation (800-568-4045) • Autoimmune Disease and Rheumatoid Arthritis (Web MD) • Autoimmune Arthritis (primary joint diseases with an autoimmune component, information from the International Autoimmune Arthritis Movement, or IAAM) • Women'sHealth.Gov fact sheet on autoimmune diseases (with fact sheets about chronic fatigue syndrome, fibromyalgia, Graves' disease, Hashimoto's disease, inflammatory bowel disease, lupus, myasthenia gravis, thyroid disease) • I Have Rheumatoid Arthritis (personal stories, advice, and support from members) • Jonathan's Story (National Health Service) Jonathan Gledhill was diagnosed with rheumatoid arthritis in 2006, aged 27. He explains how arthritis affects his life. 'If I get enough sleep and don't overdo things, it's manageable' • The Boy With a Thorn in His Joints (Susannah Meadows, NY Times Magazine, 2-1-13). On leaky gut syndrome, food (and medical) allergies linked to the sustained inflammation that characterizes autoimmune arthritis, and ways of changing the gut bacterial population (including probiotics, fish oil, and fecal transplant). • Felstiner, Mary. Out of Joint: A Private and Public Story of Arthritis (life with rheumatoid arthritis as experienced and studied by a feminist and historian). • Peterson, Alice. Another Alice. Peterson got rheumatoid arthritis at 18, at the start of a promising tennis career • Sutcliff, Rosemary. Blue Remembered Hills: A Recollection (the memoir of one of Britain’s best-loved historical novelists, crippled and badly disabled from the age of three by Still’s Disease, a form of juvenile arthritis) Autism spectrum disorders• Autism, What it is (a wonderful explanation by John Elder Robinson, author of two fascinating books on the subject: Raising Cubby: A Father and Son's Adventures with Asperger's, Trains, Tractors, and High Explosives and Look Me in the Eye: My Life with Asperger's as well as the somewhat more advice-oriented Be Different: My Adventures with Asperger's and My Advice for Fellow Aspergians, Misfits, Families, and Teachers • A Parent’s Guide to Autism Spectrum Disorder (National Institute of Mental Health) • Autism blog (Psychology Today) • Autism Society of America (ASA) • AutismOne , a nonprofit, parent-driven organization that provides education and supports advocacy efforts for children and families touched by an autism diagnosis, holding the largest and most comprehensive annual autism conference in the USA. • Desktop Diaries: Temple Grandin (Science Friday video, with Grandin explaining her autism thus: "I'm pure geek, pure logic." Missing a few social-interaction skills puts her in good company with geeks, whom we don't value enough. We have better cattle slaughter facilities in America, but not enough well-trained geeks. • The difference between ability and capability in Asperger's Syndrome (Planet Ace, 7-1--08) • OASIS (Online Asperger Syndrome Information & Support) • WrongPlanet.net (Web community and resource for individuals, and parents of those, with Asperger's Syndrome, autism, ADHD, and other PDDs). See WrongPlanet video interviews, etc. on YouTube and Autism Talk TV • Aspergian Pride (extensive links to resource and advocacy sites, including sites promoting neurodiversity as the next civil rights issue) • Adults and Autism: An Answer, but Not a Cure, for a Social Disorder That Isolates Many (Amy Harmon, NYTimes, 4-29-04), on Asperger's syndrome) • Answer, but No Cure, for a Social Disorder That Isolates Many (Amy Harmon, NYTimes, 4-29-04, on Asperger's syndrome) • Navigating Love and Autism (Amy Harmon, New York Times, Autism Grown Up, Love on the Spectrum, 12-26-11). The moving and enlightening love story of Jack Robison and Kirsten Lindsmith, both of whom fall on the autism spectrum. "Only since the mid-1990s have a group of socially impaired young people with otherwise normal intelligence and language development been recognized as the neurological cousins of nonverbal autistic children. Because they have a hard time grasping what another is feeling — a trait sometimes described as 'mindblindness' — many assumed that those with such autism spectrum disorders were incapable of, or indifferent to, intimate relationships." • Asperkids: An Insider's Guide to Loving, Understanding, and Teaching Children with Asperger's Syndrome by Jennifer Cook O'Toole and The Asperkid's (Secret) Book of Social Rules: The Handbook of Not-so-obvious Social Guidelines for Tweens and Teens With Asperger Syndrome, (both listed on (one of 15 books to read if your loved one is diagnosed with ASD (Asperger's Digest) • Genius locus: Autism and extraordinary ability (The Economist 4-16-09). There is strong evidence for a link between genius and autism. In the first of three articles about the brain, the Economist asks how that link works, and whether “neurotypicals” can benefit from the knowledge • A Family's Guide to Community-Based Instruction for Students with Disabilities (New Jersey Dept of Education) • Not more, just different (The Economist 4-10-08). An explanation for the increasing incidence of autism • A cry for help: Why some children with autism suffer in mainstream schools (The Economist 5-25-06) • Autistic and Seeking a Place in an Adult World (Amy Harmon, New YorkTimes 9-17-11). • Are we autistic people shaping the public's view of autism in ways harmful to our cause? by John Elder Robison, author of Look Me in the Eye: My Life with Asperger's and Raising Cubby: A Father and Son's Adventures with Asperger's, Trains, Tractors, and High Explosives Social Stories (a tool for teaching social skills to children with autism and related disabilities) • The Spark: A Mother's Story of Nurturing Genius by Kristine Barnett. Barnett’s son Jacob has an IQ higher than Einstein’s, a photographic memory, and he taught himself calculus in two weeks. At age two, when Jake was diagnosed, she was told he might never be able to tie his own shoes. Against the advice of her husband, Michael, and the developmental specialists, Kristine followed her instincts, pulled Jake out of special ed, and began preparing him for mainstream kindergarten on her own, resolved to follow his special interests--his "spark." • Article linking autism to vaccination was fraudulent. Fiona Godlee, editor in chief, Jane Smith, deputy editor, and Harvey Marcovitch, associate editor, British Medical Journal 5 Jan 2011. A 1998 Lancet paper, chiefly by Andrew Wakefield, implied a link between the measles, mumps, and rubella (MMR) vaccine and a “new syndrome” of autism and bowel disease. Clear evidence of falsification of data in that article should now close the door on this damaging vaccine scare, write BMJ's top editors. In a seven-part series, journalist Brian Deer shows the extent of Wakefield's fraud and how it was perpetrated: How the case against the MMR vaccine was fixed Back pain, chronic
• Handout on Health (Back Pain) (National Institute of Musculoskeletal and Skin Diseases, or NIAMS) • Back Pain Resources --an excellent list of resources by Cathryn Jakobson Ramin, author of forthcoming book The Fragile Column: How to Beat the Back Pain Industry at Its Own Game . Read this Q&A, by Barbara Feder Ostrov I've provided links below to some of those resources (and others), but Ramin explains and comments about them. Scroll down on Ramin's Resource page to find her recommendations for exercise and rehab specialists she has found particularly helpful. • New Thinking About Back Pain (PDF, Richard A. Deyo, MD, explains what was wrong with back treatment in August 1998, when this article ran in Scientific American). See also: • Is Back Surgery Worth It? An interview with the country’s leading back pain researcher (Center for Medical Consumers interview with Richard A. Meyo, MD, 10-1-07) and Back Pain and the herniated disc (Dr. Meyo interviewed by Maryann Napoli, Center for Medical Consumers, 2-25-10). • American Academy of Physical Medicine and Rehabilitation . See what they say about Physiatrists, or rehabilitation physicians , nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move. • Association of Academic Physiatrists • Back Care Basics: A Doctor's Gentle Yoga Program for Back and Neck Pain Relief by Mary Pullig Schatz, M.D. (the “barefoot back doctor") • Simple Qigong Exercises—for Back Pain Relief (Dr. Yang and Jwing-Ming) • BackFitPro.com (Dr. Stuart McGill, who practices in Ontario, Canada) • The International Society of Clinical Rehab Specialists (ISCRS) • American College of Sports Medicine (ACSM) (find someone near you with their Profinder search) • Standing Desks (Uncaged Ergonomics), of which they say this is the best version ($125). Affordably convert any table to an ergonomic sit-stand desk. • A Few Thoughts on Why—And When—We Exercise (an entry on Cathryn Jakobson Rami's blog, My Back Space). Here are three books she considers worth reading: ~Job’s Body by Dean Juhan ~Discovering the Body’s Wisdom by Mirka Knaster (old and new bodywork therapies) ~Back Sense: A Revolutionary Approach to Halting the Cycle of Chronic Back Pain by Ronald D. Siegel, MD, Michael H. Urdang, and Douglas R. Johnson, MD ~JFK's Secret Doctor: The Remarkable Life of Medical Pioneer and Legendary Rock Climber Hans Kraus by Susan E.B. Schwartz • Abigail Rasminsky's posts on back pain, especially Mini History of Aplomb, Part 1; or Why You’re Not Standing Correctly. The Beneficial Effects of Life Story and Legacy Activities by Pat McNees (Journal of Geriatric Care Management, Spring 2009). Get PDF file of journal article here (61.9KB)
Center for Medical Consumers (working to protect patients' rights--helping them make informed decisions). "Are all those drugs and tests you're told you need really critical to your health? The only way to answer this question is to read the published studies yourself. We do it for you each month. Our articles provide a critical evaluation of the latest medical research you’re not likely to get from your doctor.
Chronic fatigue syndrome. Don't wait for a cure to appear. "I had to change my life to get relief," writes Zachary Sklar (WashPost 10-27-09)."I had to take responsibility for changing the habits, the diet, the life patterns that contributed to my getting sick in the first place."
Cochran Collaborative (an international network providing impartial and independent summaries of medical research findings,, to help inform health care providers' decisions about whether a particular treatment will work better than another and do more good than harm--in other words, providing "evidence-based" recommendations. ). See top 50 reviews. Coping With Crises Close to Someone Else's Heart (Harriet Brown, NYTimes 8-16-10), essay on why some people distance themselves from those suffering a crisis or offer "pseudo-care" instead of real help)
Chronic Mom says "Hope is catching." A blog for parents of children with chronic health issues, by a mother of two children who have cystic fibrosis.
Dementia, non-Alzheimer's
• Dementia Care Central (dealing with various forms of dementia, including Alzheimer's disease, vascular dementia, Lewy body dementia, and frontotemporal dementia or FTD) • FTD or frontotemporal dementia is the leading cause of dementia in middle age. It strikes at a younger age than Alzheimer´s. Cases have been seen as early as 21 and as late as 80, but the disease typically hits during the 40s, 50s and 60s – when children are still in the home." ~ from excellent site of the University of California, San Francisco. Especially helpful explanations of Forms of Frontotemporal Dementia: Behavioral variant FTD, semantic dementia, progressive nonfluent aphasia, and FTD with motor neuron disease. One of the most complete (yet succinct) explanations can be found in a free PDF publication from the National Institute on Aging: Frontotemporal Disorders: Information for Patients, Families, and Caregivers. It discusses frontotemporal dementia, primary progressive aphasia, and movement disorders--brain disorders that affect personality, behavior, language, and movement. It includes these links to useful resources. Jane Brody wrote a story about primary progessive aphasia (P.P.A.):A Thief That Robs the Brain of Language (NY times, 5-2-11). • Rachel Hadas, who "lost" her husband to FTD, writes about how his decline changed their lives in her memoir Strange Relation: A Memoir of Marriage, Dementia, and Poetry, spotlighted on NBCC's Critical Mass. She speaks about her husband's illness in an interview on NPR's Talk of the Nation (Spouse's Dementia Leaves Poet A 'Strange Relation'). Hadas recommends The Association for Frontotemporal Degeneration (AFTD) and the Well Spouse Association (support groups for spousal caregivers). Here's her poem, “In the Taxi to the MRI.” • What's the Difference Between Alzheimer's and Dementia? (Robert Stern, Alzheimer's Reading Room) DiabetesThere are many blogs and websites about diabetes, and support groups that provide opportunities to connect with others with diabetes and to ask questions, exchange advice, and so on. • American Diabetes Association/a> (ADA, many resources) • Advice for Newbies (David Mendosa) • Diabetes (PubMed Health, medical encyclopedia entry -- see "what works" top right, click on "see all") • Diabetes Factsheet (World Health Organization) • Diabetes Online Community (DOC) • Diabetes Overview--frequently asked questions (National Diabetes Information Clearinghouse) • Diabetes Action , research and educational foundation, funding research that otherwise might not get done. View videos from past Diabetes University presentations • Diabetes Directory (David Mendosa's comprehensive site) and Online Diabetes Resources (also Mendosa's) • Diabetes support groups (Inspire website) • DiabetesWorld (a Yahoo discussion list for people with Diabetes Mellitus to exchange ideas about the disease, its treatment, diet, blood glucose monitoring, and improving the quality of life) • The Glycemic Index , which ranks food according to how it affects blood sugar levels (Mendosa.com, who explains and provides helpful links) • Blood Sugar 101: What They Don't Tell You About Diabetes • 50 Diabetes Myths That Can Ruin Your Life: And the 50 Diabetes Truths That Can Save It by Riva Greenberg (as reviewed on Diabetes Mine, 7-6-09). • MyDiabetesCentral.com, the diabetes section of HealthCentral.com • The First Year: Type 2 Diabetes: An Essential Guide for the Newly Diagnosed by Gretchen Becker • Second Story Woman: A Memoir of Second Chances by Carole Calladine, a memoir of experiencing a midlife crisis, second chances, and the onset of type II diabetes. • MyDiabetesCentral on HealthCentral (online resources for people with various health problems) • National Diabetes Information Clearinghouse (NDIC) (NIDDK) • Top 10 Resources for Information About Diabetes (David Mendosa) • Weight Loss Surgery May Not Combat Diabetes Long-Term (Anahad O'Connor, Well, NY Times, 11-28-12) • Diabulimia: All in Our Heads? (Amy T, DiabetesMine, 10-28-10). In 2007, journalists began writing about diabulimia (women with type 1 diabetes, who were shunning their medication for fear of getting fat-- or restricting or stopping taking their insulin to lose weight). See articles by expert Ann Goebel-Fabbri, at the Joslin Diabetes Center. There is a new book by Maryjeanne Hunt about battling this eating disorder: Eating to Lose: Healing from a Life of Diabulimia, which is reviewed here. • New Insights Into the Link Between Obesity and Diabetes (Dan Ferber, Healthy Imagination 11-1-11) • Diabetic Shoes Hub (this is not an endorsement--just to let you know it exists) Blogs on diabetes include: • Gretchen Becker, Wildly Fluctuating, musings on diabetes news of the week by a Type 2 diabetes patient-expert, and Gretchen Becker's share posts on MyDiabetesCentral.com, the diabetes section of HealthCentral.com. See also Gretchen's book, The First Year: Type 2 Diabetes: An Essential Guide for the Newly Diagnosed • Diabetes Daily (David and Elizabeth Edelman • Diabetes Mine (Amy Tenderich focuses on type 1 diabetes, providing news about diabetes research and devices) • Diabetes Self-Management • Type 2 Diabetes--A Personal Journey (Alan Shanley's experiences, down under--he's an Aussie) • Diabetes Update (blog, what they don't tell you about diabetes) • Diabetes Stops Here (blog of the American Diabetes Association) • The 17 Best Diabetes Blogs of 2012 (Leah Snyder, Healthline, 3-29-12) • Top Seven Diabetes Blogs/Social Networking Sites (Hope Warshaw, Eat Healthy, Live Well, 5-25-10) EATING DISORDERS
• National Eating Disorders Association (NEDA) (forums and other forms of support • Eating Disorders News (blog of Psychology Today) • Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders (10 pages, free download from Academy for Eating Disorders (AED) . • Videos about eating disorders (Academy for Eating Disorders) • Eating disorder not otherwise specified (EDNOS), Wikipedia entry • Something Fishy (website on eating disorders) • Eating Disorders (free detailed booklet describes the symptoms, causes, and treatments of eating disorders, National Institutes of Mental Health) • National Eating Disorder Information Centre's blog • Eating disorders 'prevalent among fitness professionals' (Rhiannon Beacham, BBC News, 12-31-12) • Binge Eating in Men: Understanding a Widely Misunderstood Eating Disorder (Carolyn C. Ross, Psychology Today, 10-2-12) • Wasted: A Memoir of Anorexia and Bulimia by Marya Hornbacher. Written at 23 for young adults, this brutally candid memoir may "trigger" those still in grips or early stages of disease, say some readers, serving as a how-to guide for eating disorders. Good insight for families of those with ED. • Diabulimia: All in Our Heads? (Amy T, DiabetesMine, 10-28-10). In 2007, journalists began writing about diabulimia (women with type 1 diabetes, who were shunning their medication for fear of getting fat-- or restricting or stopping taking their insulin to lose weight). See articles by expert Ann Goebel-Fabbri, at the Joslin Diabetes Center. There is a new book by Maryjeanne Hunt about battling this eating disorder: Eating to Lose: Healing from a Life of Diabulimia, which is reviewed here. Endometriosis: 'Every part of my body hurt' (a powerful account of her personal experience by novelist Hilary Mantel, The Guardian, 6-4-04, on her years of pain and fatigue with the underdiagnosed disease endometriosis). After years of pain and fatigue, novelist Hilary Mantel was diagnosed with endometriosis, a disease so little understood, she was offered psychiatric treatment. "The big three symptoms--of which all GPs should be aware -- are painful menstruation, painful sex, and infertility....Early diagnosis is crucial. It must be treated and managed before permanent damage is done." Mantel also talks about her endometriosis in this interview by Terry Gross (Fresh Air, WHYY, 11-26-12), which is chiefly about her novel Bring Up the Bodies.
Endometriosis Explained (this page links to blogs written by women with endometriosis or chronic pelvic pain) Energyfields.org (citizens and professionals concerned about safe uses of electromagnetic radiation)
Family Health History Resources (Genetic Alliance's helpful links to resources)
Fanconi Anemia: A Handbook for Families and Their Physicians by Lynn and Dave Frohnmayer (available free, online, in PDF format)
Fibromyalgia (FMS)• American Fibromyalgia Syndrome Association (AFSA) • National Fibromyalgia Association (NFA) • Fibromyalgia (MedlinePlus, National Library of Medicine) • Fibromyalgia (Mayo Clinic) • Fibromyalgia Support Net (support for those with fibromyalgia, and their caregivers and families). Publishes a free e-book: Practical Living with Fibromyalgia (by Maurice S. Clarke). Site created by Mary Clarke and her husband, Maurice. • Groups helping with fibromyalgia (posted by Fibromyalgia Support Net, the Clarkes's site) • Fibromyalgia Network • Fibromyalgia (Wikipedia's entry on this is lengthy and heavily referenced) • Exercise for fibromyalgia (PubMed Health, Cochrane Database of Systematic Reviews 10-17-07) • Fibromyalgia (American College of Rheumatology) • Fighting Fibromyalgia (Lisa Robertson's blog) • Fibro and Fabulous (Kimberley Linstruth-Beckom's blog) • Fibromyalgia Experiment ("Sarakastic"'s blog) • Women and Fibromyalgia • 10 Food Rules for Pain Patients (Mara Betsch, "The Febro-Food Connection," Health). See thumbnails of all 10 rules. Genetic Alliance, a nonprofit health advocacy organization devoted to promoting optimum health care for people suffering from genetic disorders, whose network of groups includes more than 1,000 disease-specific advocacy organizations (including some focused on intersexed conditions) as well as universities, private companies, federal agencies, policy groups, and private citizens working to promote genetic research. **HealthCentral has sites (and blogs) in these categories: Acid Reflux, ADHD, Allergy, Alzheimer's, Anxiety, Arthritis, Asthma, Bipolar, Blood Pressure,Breast Cancer,Cholesterol, Chronic Pain,Cold and Flu, COPD, Depression, Diabetes, Diabetes and Teens, Diet and Exercise, Erectile Dysfunction, Food and Nutrition, Heart Disease, Herpes, HIV/AIDS, IBD, Incontinence, Learning Disabilities, Menopause, Migraine, Multiple Sclerosis, Obesity, Osteoporosis, Prostate, Rheumatoid Arthritis, Schizophrenia, Sexual Health, Skin Cancer, Skin Care, Sleep, Wellsphere. This looks like a good place to start finding out about a health problem.
Check out HealthCentral's Video Library. The videos I sampled (from a large, searchable, well-organized collection), looked very helpful, especially for those new to a condition. The videos come from various sources. Heart (cardiac) diseases and conditions
• What is Coronary Heart Disease? National Heart, Lung, and Blood Institute, NHLBI) • Links to important information on heart disease (NHLBI) • Nova has useful material online: Map of the Human Heart (images showing bloods flow path through the heart), Troubled Hearts (images), Treating a Sick Heart • 6 Symptoms of Women's Heart Attacks (Lisa Fields, WebMD -- symptoms for women often differ from symptoms for men, and more women die from heart attacks than from breast cancer) • Heart Disease (HealthLine) • Heart diseases (also called cardiac diseases) (Medline Plus) • Calculate your risk of heart attack (Heart to Heart) • Cut to the Heart (PBS series on radical but promising new form of heart surgery) • Resources for a healthy heart (PBS Take One Step Health Campaign) • Am I heading for a heart attack? (Dan Roberts, The Independent UK, 4-18-11). Roberts weighs the evidence-based pros and cons of taking statins when his cholesterol is high. (Scoring for cholesterol is different in Canada and the UK than in the U.S., so cholesterol numbers here might confuse U.S. readers) • The NNT The Number Needed to Treat -- a tool to communicate benefit and harm that both patients and doctors can understand (traditionally, the number required to prevent one death). See also the Lancet article, Numbers needed to treat (needlessly?) by Peter Bogaty and James Brophy, suggesting that the NNT obscures the reality that many patients are treated without benefit. Figures on such questions as whether taking an aspirin prevents a heart attack (or does harm), whether beta blockers prevent myocardial infarction (or do harm), is the Mediterranean diet helpful after heart attack, do statin drugs given for five years (with or without known heart disease)help or harm health, in what ways? and so on. • Surprising Facts About Women and Heart Disease (Lisa Collier Cool, Ladies' Home Journal, 2-6-13) • A bad heart and housemaid's knee (Pat McNees's story about xanthomas caused by type-II hyperlipoproteinemia) • Frank, Arthur W . At the Will of the Body: Reflections on Illness (explores what illness can teach us about life, drawing on his experience having a heart attack and cancer) • Lear, Martha Weinman. Heart-Sounds: The Story of Love and Loss (heart disease) • McKee, Steve. My Father’s Heart: A Son’s Journey (a tender memoir about suburban life in York, PA and Buffalo, NY -- in the 1960s, in every sense a “family history,” shedding light on heart disease, especially as inherited in families). Check out Steve McKee’s blog , too. Kidney Failure and Organ Transplants
• Part 1: 'Survival of the savviest" (Josephine Marcotty, StarTribune, 9-30-09, updated--an excellent series). Kidney disease has hit crisis stage, and demand for organs is exploding. Melissa Larson's life is defined by the prison of dialysis. In the free-for-all search for a living kidney donor, Melissa Larson is on her own. • The Kidney: A body's filter ( Eddie Thomas, 9-28-09) An interactive graphic that looks at how kidney's work to remove toxins and water from the blood • The wait for a kidney gets longer every year. The number of Americans waiting on the national kidney registry has exploded since 1989, the result of an epidemic of kidney disease and breakthroughs in transplant medicine. Today, the average wait is five years... L'Arche ("relationship, transformation")--L’Arche faith-based communities are family-like homes where people with and without disabilities share their lives together.
Migraine • The Daily Headache (blog that looks candidly with living with headaches & migraines) • National Migraine Association (MAGNUM). See also the story Finding Good Migraine Care a Headache for the Uninsured (Amanda Gardner, BusinessWeek 4-12-10) • Biofeedback: A High-Tech Weapon Against Migraines by Sue Russell (HealthyMagination 7-18-11) • An Exploration Of 'The Migraine Brain' (Terry Gross, Fresh Air, WHYY, 11-4-08, interviews Carolyn Bernstein, author of The Migraine Brain: Your Breakthrough Guide to Fewer Headaches, Better Health • Migraine Chick (Deborah Leigh's blog, and she has a bloglist of others writing on the topic) • Migraine Cast weekly podcast, (Teri Robert, patent advocate) • Migraine Research Foundation • Migraine Quiz, excerpted from The Women's Migraine Survival Guide by Christina Peterson and Christine Adamec (on Migraine Survival site • Migraines (Health Central) • Patient Voices: Migraine (NY Times Health Guide) • Help for Headaches (Ontario site) MIGRAINE, BOOKS ABOUT: • Breaking the Headache Cycle: A Proven Program for Treating and Preventing Recurring Headaches by Ian Livingston and Donna Novak • Living Well with Migraine Disease and Headaches: What Your Doctor Doesn't Tell You...That You Need to Know by Teri Robert • The Migraine Brain: Your Breakthrough Guide to Fewer Headaches, Better Health a book by Carolyn Bernstein and Elaine McArdle • Migraine Expressions: A Creative Journey Through Life With Migraine by Betsy Baxter Blondin • Validate Your Pain! Exposing the Chronic Pain Cover-Up by Allan Chino and Corinne Dille Davis • Migraine Treatment, Prevention in Black Women. Pam oliver talks with Farai Chideya (NPR, 2-28-08) about what causes painful headaches and what can be done to help. African Americans tend to report higher levels of headache pain but are less likely to get treatment. • What's Triggering Your Migraine? (Allison Aubrey, Morning Edition, NPR 4-27-06) • Q & A: Your Questions on Migraine (Vikki Valentine, NPR, with David Buchholz, co-author with Stephen Reich of Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain. It's allergy season and your head is pounding, what do you take? Tylenol Sinus, Advil or Imitrex? And what's a vegan with migraine to do? • The Woman's Migraine Toolkit: Managing Your Headaches from Puberty to Menopause by Dawn A.Marcus and Philip A. Bain Mindfulness meditation offers help with the travails of chronic illness (The Conversation, 6-10-11). A mindfulness-based stress reduction (MBSR) program originally used for managing chronic pain and stress-related disorders has since helped people with cancer, chronic pain, stress, anxiety, depression, fibromyalgia, psoriasis, disordered eating and other conditions.
Months to Live: Fighting for a Last Chance at Life (Amy Harmon, NY Times 5-16-09, on ALS patient Joshua Thompson's struggle to get access to an experimental drug whose safety and efficacy had not been tested, but which might slow the progressive paralysis that comes with ALS).
NIH Research. CRISP replaced by NIH RePORTer (NIH Research Portfolio Online Reporting), a searchable database on federally funded biomedical research projects and programs. News updates here.
PANDORA (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy)
Parkinson's disease• Parkinson's Disease: Hope through research (National Institute of Neurological Disorders and Stroke, or NINDS) • NeuroTalk support groups • Normal pressure hydrocephalus (often misdiagnosed as Parkinson's or Alzheimer's) • What is Parkinson’s Disease? (Parkinson's Disease Foundation) • A healthy state of denial (Michael Kinsley, Guardian 12-13-01). Eminent American writer Michael Kinsley explains why he has spent the past eight years pretending not to have Parkinson's • Mine Is Longer than Yours. Michael Kinsley (The New Yorker, 4-7-08). A diagnosis of Parkinson's disease forces Kinsley to reflect on mortality earlier than his peers; in this piece, he examines longevity as the last competitive game among baby boomers. • A Silver Lining (Amazon Kindle). Elaine Benton's memoir of growing up with Gaucher disease (a rare, inherited disorder), and battling Parkinson's, while remaining positive and living life to the full. • Secret Handshake (Elaine Benton's blog on Living with Parkinson's and Gaucher's disease). This entry: Having Parkinson’s is somewhat like belonging to a secret society. One member of this secret society can always spot another, without a single word being uttered. See her book of poems: Parkinson's, Shaken not Stirred! • Michael J. Fox's memoir Always Looking Up: The Adventures of an Incurable Optimist. Listen to the audiobook of this book by the actor-turned-philosophical-optimist about what can be taken from you (in his case, with Parkinson's disease, a neurological degenerative disease that takes away easy control of movement) and what cannot. • Parkinson's Patients Find Grace in Dance (Jacki Lyden, All Things Considered, 12-13-08) • A Life Shaken:My Encounter with Parkinson's Disease by Joe Havemann. Patient Voices, a NY Times series of first-person accounts (in audio) of living with various chronic diseases, including A.D.H.D.,
AIDS and H.I.V., A.L.S. (Lou Gehrig's disease), bipolar disorder, Eating Disorders, Epilepsy. Check out the whole list. The Permanent Pain Cure: The Breakthrough Way to Heal Your Muscle and Joint Pain for Good by Ming Chew with Stephanie Golden • PTSD. National Center for PTSD (informative U.S. Dept of Veterans Affairs website--click on "Search PILOTS" to find published articles on various aspects of post-traumatic stress disorder). Download free: Psychological First Aid: Field Operations Guide(an evidence-informed modular approach for helping people immediately after a disaster or terrorism). • PTSD (Posttraumatic Stress Disorder): Combat: Winning the War Within (Ilona Meagher’s blog) • No End to Trauma for Some Older Veterans (Paula Span, The New Old Age, NY Times, 3-15-13). “But at least now they know about this stuff. Nobody told me anything for 55 years.” • A Physician’s Take on PTSD (Adam Wahlberg, Think Piece, interviews physician Ron Glasser on how soldiers today survive the impact of PTSD and struggle to readjust to society). Here's an earlier Think Piece interview with Glasser, whose book 365 Days documented his time as a physician during the Vietnam war and explained why Mailer's novel The Naked and the Dead is overrated. • PTSD. William Finnegan,The Last War: A decorated marine's war within (New Yorker, 9-29-08) • PTSD. Virtual Iraq: Using simulation to treat a new generation of traumatized veterans (Sue Halpern, New Yorker, 5-19-08) • PTSD Information Center (U.S. Dept of Veterans Affairs answers to questions about posttraumatic stress disorder) • The Post-Traumatic Stress Disorder Sourcebook: A Guide to Healing, Recovery, and Growth by Glenn Schiraldi • Heal My PTSD (blog by Michele Rosenthal, author of the memoir Before the World Intruded: Conquering the Past and Creating the Future • In an Unspoken Voice: How the Body Releases Trauma and Restores Goodness by Peter A. Levine • The Body Remembers: The Psychophysiology of Trauma and Trauma Treatment by Babette Rothschild • Healing Combat Trauma (Lily Casura's blog, therapeutic resources for combat=based PTSD, focused on integrative medicine and hope). • Top 50 bloggers shed light on PTSD (Masters in Psychology, with helpful descriptions of each blog's focus) • 40 Excellent Blogs for PTSD Support (Nursing Schools, 2010) • Top 25 PTSC Blogs (Medical Assistants Schools, 2010) Pulse: voices from the heart of medicine (personal accounts of illness and healing, fostering the humanistic practice of medicine, encouraging health care advocacy). See Pulse's archive of poems and stories.
• The Simple Idea That Is Transforming Health Care (Laura Landro, WSJ, 4-16-12). A focus on quality of life helps medical providers see the big picture—and makes for healthier, happier patients. Focusing on well-being might seem like a basic idea, but it is a departure from the traditional approach, especially with chronic-disease sufferers.
Sleep apnea This is a surprisingly common problem, which robs you of energy. Snore loudly? Pause for breath during night? Awaken tired? Get tested. Here are some helpful links. • American Sleep Apnea Association • ASAA forum (discussion board) • CPAP devices • Provent (a new device, less cumbersome than a CPAP machine) Some books that may be helpful: • Questions & Answers About Sleep Apnea by Sudhansu Chokroverty • Sleep Apnea-The Phantom of the Night: Overcome Sleep Apnea Syndrome and Win Your Hidden Struggle to Breathe, Sleep, and Live by T. Scott Johnson • Restless Nights: Understanding Snoring and Sleep Apnea by Peretz Lavie • Sleep, Interrupted: A physician reveals the #1 reason why so many of us are sick and tired by Steven Y. Park • Sleep Apnea and CPAP - A User's Manual By a User by Bruce Stein • Snore No More by James L. Mosley Stroke
• What Is Stroke? (National STROKE Association) • Stroke • Fact Sheet: Coping psychologically after a stroke (PubMed Health, 12-21-12) • Jill Bolte Taylor's stroke of insight. Fascinating, informative, inspirational TED talk (on video), partly about how the brain works. Taylor (whose brother has schizophrenia) got a research opportunity few brain scientists would wish for: She had a massive stroke, and watched as her brain functions -- motion, speech, self-awareness -- shut down one by one. You can also read her book: My Stroke of Insight: A Brain Scientist's Personal Journey (a story that provides hope for the brain-injured, not just those who have had a stroke, as this young brain scientist did) • After the Stroke by May Sarton. The poet's journal about recovering from a mild stroke when she is in her seventies. • The Diving Bell and the Butterfly: A Memoir of Life in Death by Jean-Dominique Bauby. Immobilized by a stroke, the narrator discovers the life of the unfettered imagination. • Remind Me Who I Am, Again by Linda Grant. About how her mother's vascular dementia (brought on by small strokes) exacerbates Grant's troubled relationship with the woman. StrokeAct FAST. Time lost is brain lost. FAST is an acronym to help you remember and recognize the signs of stroke: Face drooping– Does one side of the face droop or is it numb? Arm weakness – can they raise both of their arms above their head? Does one arm drift downward? Speech difficulty– is their speech slurred? are they hard to understand? Time to call 9-1-1 and get them to the hospital immediately. Do not delay. • What happens during a stroke (Jacque Wilson, CNN, well illustrated, 2-17-13) • What Is Stroke? (National STROKE Association) • Stroke (NCBI) • Stroke Caregivers Handbook (Joyce Dreslin, StrokeSAFE, read online, or download the PDF • Recovery After Stroke: Coping with Emotions (National Stroke Association) • Recovering After Stroke (MedlinePlus) • Stroke Rehabilitation: What to Expect After a Stroke (WebMD) • Relationships; Families as Victims of Stroke (Georgia Dullea, NY Times, Style, 5-9-83) • Therapeutic Writing: Life Stories Punctuated by Healing (Carol Keegan, stroke survivor, Stroke Connection, Spring 2013) • Fact Sheet: Coping psychologically after a stroke (PubMed Health, 12-21-12) • Stroke (NY State Dept of Health fact sheet). Reduce stroke risk by reducing risk factors: high blood pressure, carotid or coronary artery disease, atrial fibrillation (irregular heart beat), diabetes, tobacco use, and elevated levels of cholesterol, excessive alcohol use, and (risk factors that can't be changed:) prior transient ischemic accident (TIA) or previous stroke, age, genetic heritage/family history, race (African Americans are at much greater risk, partly because of high blood pressure, diabetes, and obesity). Fatty deposits in blood vessels cause the majority of stroke cases. High blood pressure is the leading cause of stroke, according to the American Stroke Association. "Stroke is more common in men than in women. In most age groups, more men than women will have a stroke in a given year. However, more than half of total stroke deaths occur in women. At all ages, more women than men die of stroke. Use of birth control pills and pregnancy pose special stroke risks for women." • After the Stroke by May Sarton. The poet's journal about recovering from a mild stroke when she is in her seventies. • The Diving Bell and the Butterfly: A Memoir of Life in Death by Jean-Dominique Bauby. Immobilized by a stroke, the narrator discovers the life of the unfettered imagination. • Jill Bolte Taylor's stroke of insight. Fascinating, informative, inspirational TED talk (on video), partly about how the brain works. Taylor (whose brother has schizophrenia) got a research opportunity few brain scientists would wish for: She had a massive stroke, and watched as her brain functions -- motion, speech, self-awareness -- shut down one by one. You can also read her book: My Stroke of Insight: A Brain Scientist's Personal Journey (a story that provides hope for the brain-injured, not just those who have had a stroke, as this young brain scientist did) • Remind Me Who I Am, Again by Linda Grant. About how her mother's vascular dementia (brought on by small strokes) exacerbates Grant's troubled relationship with the woman. Stuttering• Friends. The National Association of Young People Who Stutter. Here are some articles for parents. • StutterTalk (changing how you think about stuttering...one podcast at a time) • The Stuttering Foundation offers many resources, including Famous People Who Stutter • British Stammering Association (BSA) • Support organizations for people who stutter • Passing Twice (an informal network of gay, lesbian, bisexual, and transgender persons who stutter and their friends) • Five Myths About Stuttering (The Stuttering Foundation) • Therapy referral lists of speech-language pathologists (therapists) (The Stuttering Foundation) • Board-Recognized Fluency Specialists (StutterTalk) • Our Time (helping kids who stutter) • Journalist, Interrupted (Barry Yeoman, 12-21-2001). "Why my stutter makes me a better reporter." • Reporting from the 10th World Congress for People Who Stutter (podcast from Netherlands, Ep. 401, 6-10-13, Day 1 with David Mitchell, author of the coming-of-age novel Black Swan Green • Public Speaking, Stuttering and Doing What You Fear ((Ep. 400 of StutterTalk podcasts, 6-5-13) • Singing and stuttering: what we know (The Stuttering Foundation). "Understanding what dramatically reduces stuttering during singing may eventually help us understand stuttering better..." • Jezer, Marty. Stuttering: A Life Bound Up in Words. Here's Randy Holhut with Storied Writer and Activist Jezer Dies (Common Dreams, 6-13-2005) "Question authority." "Keep singing." Suddenly, my life changed . Judy Steed developed an aneurysm behind her right eye, which made her see what aging really looks like. (Toronto Star print story and video, 11-8-08) Superbug . Maryn McKenna's Wired blog on antibiotic resistance. See also Superbug, the old blog), which includes research, strategies, and stories from the struggle against methicillin-resistant Staph aureus (MRSA). Support Groups. This Inspire list of "health and wellness" support groups provides links related to Addiction (12 groups), Alternative and complementary medicine (6), Asthma and allergies (22), Autoimmune diseases (54), Blood and lymphatic disorders (42), Bones, joints and muscles (62), Brain and nervous system (75), Cancer (60), Caregivers (16), Children's health (60), Clinical trials (1), Diabetes and hormones (36), Diet and nutrition (17, Digestive system disorders (46), Ear, ose and throat (24), Eyes and vision (32), Fitness and exercise (8) Gay and lebian health (1), Genetic disorders (95), Health insurance (1), Heart and circulation (45), HIV and AIDS (2), Hospice, end-of-life care and bereavement (3), Infant health (43), Infectious diseases (41), Inspiration (3), Kidneys and urinary system (47), Lungs and respiration (41), Men's health (33), Mental health (23), Mind and body wellness (4), Oral health (19), Pain (7), Parenting (8), Plastic and reconstructive surgery (3), Pregnancy and childbirth (37), Rare diseases (44), Senior health (48), Sexual health (26), Skin conditions (33), Sleep disorders (9), Teen health (21), Undiagnosed medical problems (2), Women's health (56). This is by no means a complete list, but it is a start! If you don't find what you need, try googling all the terms related to what you want a group for, plus "support group."
• Giving More Support to Support-Group Leaders (Laura Landro, WSJ, 4-16-12). • Sample Guidelines, American Self-Help Group Clearinghouse • Self-Help Group Sourcebook Online (American Self-Help Group Clearinghouse) • Mental Health & Psychology Resources Online (Psych Central) Traumatic Brain Injury (TBI)Traumatic Brain Injury (TBI), information page of the National Institute of Neurological Disorders and Stroke (NINDS) • Traumatic Brain Injury Survival Guide (Dr. Glen Johnson, clinical neuropsychologist). Read this extended guide online. • A Central Park Victim Recalls 'When I Was Hurt,' and Her Healing . Anemona Hartocollis on overcoming traumatic brain injury (NY Times, 6-8-06) • Bret, Unbroken (Steve Friedman's wonderful story, Runner's World, 5-3-13). His brain and body shattered in a horrible accident as a young boy, Bret Dunlap thought just being able to hold down a job, keep an apartment, and survive on his own added up to a good enough life. Then he discovered running. • Traumatic Brain Injury and Post Concussion Syndrome (PCS) (a NeuroTalk online support and discussion group) • Grateful to Be Back. Actress Kim Lowry returns to the stage after recovering from a traumatic brain injury. (Sherilyn Forrester, Tucson Weekly, 8-2-12) WE MOVE, Worldwide Education and Awareness for Movement Disorders, has useful information pages about ataxia, bradykinesia, chorea and choreoathetosis, corticobasal degeneration, dyskinesias (paroxysmal), dystonia, essential tremor, hereditary spastic paraplegia, Huntington's disease, multiple system atrophy, myoclonus, Parkinson's disease, progressive supranuclear palsy, restless legs syndrome, Rett syndrome, spasticity, Sydenham's chorea (St. Vitus' dance), tics, Tourette's sydrome, tremor, and Wilson disease.
What's Wrong with Summer Stiers? (Robin Marantz Henig, Medical Detectives, New York Times Magazine, 2-18-09), the story of a patient with more than her share of medical problems--she suffered retinal bleeding, seizures, bone death, and kidney failure--and of efforts by NIH's Undiagnosed Diseases Program to get to the root of the problem). See also Why Did Summer Stiers Die? (Robin Henig, XX Factor, Slate, 7-9-09)
• American Academy of Pain Management • American Academy of Pain Medicine • American Chronic Pain Association. Resources include a list of conditions characterized by pain and A Consumer Guide to Pain Medication and Treatment • American Fibromyalgia Syndrome Association (AFSA) • American Pain Foundation (which has absorbed the National Pain Foundation) • Biofeedback: A High-Tech Weapon Against Migraines (Sue Russell, Healthymagination 7-18-11) • Chronic Lyme and other tick-born diseases ("When the doctor gets sick, the journey is double-edged," by Pamela Weintraub, Psychology Today, in 3 parts) • Dancing with Pain (one approach to pain relief) • For Grace. Resources for Women in Pain. • How to Cope with Pain website (breathing and relaxation exercises, guided imagery,etc.--includes favorite how-to-cope-with-pain submissions • Living With Pain That Just Won’t Go Away (Jane E. Brody, NY Times, 11-6-07) • Pain Relief Network (where chronic pain patients, doctors, and supporters can be heard) • Partners Again Pain (addressing untreated and undertreated pain in America) • Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), promotes public and professional awareness of Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD) • The Psychology of Pain: It’s Not What You Think (Stan Goldberg's interesting and informative essay) CHRONIC, RARE, OR INVISIBLE DISEASES, INCLUDING MENTAL HEALTH PROBLEMS • Ansay, A. Manette. Limbo: A Memoir (an undiagnosed muscle disorder cuts short her career as a concert pianist) • Barron, Judy and Sean. There's a Boy in Here (life with autism, from both mother's and son's viewpoint) • Bauby, Jean-Dominique. The Diving Bell and the Butterfly: A Memoir of Life in Death (immobilized by a stroke, the narrator discovers the life of the unfettered imagination) • Beasley, Sandra. Don't Kill the Birthday Girl: Tales from an Allergic Life. Beasley's allergies —severe and lifelong—include dairy, egg, soy, beef, shrimp, pine nuts, cucumbers, cantaloupe, honeydew, mango, macadamias, pistachios, cashews, swordfish, and mustard--and that's just the food allergies. A memoir with explanations, for any family dealing with allergies. • Benton, Elaine. A Silver Lining (Amazon Kindle). Growing up with Gaucher disease (a rare, inherited disorder), and battling Parkinson's, while remaining positive and living life to the full. • Bernstein,Jane. Loving Rachel (about life with a blind daughter) • Bissinger, Buzz. Father's Day: A Journey into the Mind and Heart of My Extraordinary Son. A father learns more about his adult son, a twin who, deprived of oxygen for three minutes at birth, is mentally challenged but a savant with a powerful memory. • Black, Kathryn. In the Shadow of Polio: A Personal and Social History (a memoir of Black's childhood experience of a mother in an iron lung, wrapped in the larger story of the search for a cure) • Bragg, Bernard. Lessons in Laughter: The Autobiography of a Deaf Actor • Breslin, Jimmy.I Want to Thank My Brain for Remembering Me • Brodkey, Harold. This Wild Darkness: The Story of My Death (the story of his confrontation with AIDS) • Brookes, Tim. Catching My Breath: An Asthmatic Explores His Illness • Brown, Harriet. Brave Girl Eating: A Family's Struggle with Anorexia (by the author of Feed Me!: Writers Dish About Food, Eating, Weight, and Body Image) • Brown, Ian. The Boy in the Moon: A Father's Search for His Disabled Son. Memoir of Brown's relationship with his son, Walker, born with a rare genetic disorder that leaves him profoundly developmentally disabled. Not yet for sale in USA; available through Amazon Canada (based on Brown's excellent illustrated series, The Boy in the Moon in Canada’s Globe & Mail). • Callahan, John.Will the Real John Callahan Please Stand Up?: A Quasi-Memoir. Paralyzed from the neck down after an automobile accident when he was 21, Callahan became "America's most offensive quadriplegic cartoonist," making fun of disability, among other things. • Casey, Nell, ed. Unholy Ghost: Writers on Depression • Casey, Nell, ed. An Uncertain Inheritance: Writers on Caring for Family (and some writers on being cared for) • Cohen, Leah Hager. Train Go Sorry: Inside a Deaf World. The hearing grandchild of deaf immigrants, Cohen (a sign-language interpreter whose father headed the Lexington School for the Deaf in Manhattan) traces the lives of a Russian immigrant (learning a second and third language, English and American sign language or ASL) and a boy raised in an urban ghetto, to explore the world and issues of deafness: debates over ASL, oralism, mainstreaming, cochlear implants (which some contend rob the deaf of their culture). ("Train go sorry" means "you missed the boat.") • Cohen, Richard M. Blindsided: Lifting a Life Above Illness, a Reluctant Memoir (living with multiple sclerosis and later colon cancer, and how his illness affected his wife, Meredith Vieira, and their three children). Cohen also wrote Strong at the Broken Places (stories about five "citizens of sickness," individuals with ALS, non-Hodgkin's lymphoma, Crohn's disease, muscular dystrophy, and bipolar disorder). • Costello, Victoria. A Lethal Inheritance: A Mother Uncovers the Science Behind Three Generations of Mental Illness ) (partly about her sons' depression and schizophrenia). See her essay: The Implications of plot lines in narrative and memoir. • Cousins, Norman. Anatomy of an Illness as Perceived by the Patient (a classic take on how attitude, and especially laughter, affects health outcomes) • DeBaggio, Thomas. Losing My Mind: An Intimate Look at Life with Alzheimer's (the early memories and the daily struggle of a man coming to terms with a progressively debilitating illness) • Dendy, Chris A. Zeigler and Alex Zeigler. A Bird's-Eye View of Life with ADD and ADHD: Advice from young survivors (for children and teenagers with the disorder) • Dubus, Andre. Meditations from a Movable Chair and the earlier collection of essays Broken Vessels (both written after a 1986 highway accident left him largely confined to a wheelchair, and only some essays deal with his response to the accident and his view of life from a wheelchair) • Edwards, Laurie. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties • Ellison, Katherine. Buzz: A Year of Paying Attention , captured partly in her Washington Post article, For ADHD, lots of snake oil, but no miracle cure • Felstiner, Mary. Out of Joint: A Private and Public Story of Arthritis (life with rheumatoid arthritis as experienced and studied by a feminist and historian). • Finger, Anne. Past Due: A Story of Disability, Pregnancy, and Birth (a hard-to-put-down memoir that brings to life the politics of pregnancy with a disability, or with fear of bearing a child with a disability-- in Finger's case from a woman whose childhood was made more difficult by surviving both polio and an abusive father). For more about the illness that left her disabled, read her Elegy for a Disease: A Personal and Cultural History of Polio • Fishman, Steve. A Bomb in the Brain: A Heroic Tale of Science, Surgery, and Survival (about surviving an aneurysm) • Fox, Michael J. Always Looking Up: The Adventures of an Incurable Optimist. Listen to the audiobook of this book by the actor-turned-philosophical-optimist about what can be taken from you (in his case, with Parkinson's disease, a neurological degenerative disease that takes away easy control of movement) and what cannot. • Frank, Arthur W . At the Will of the Body: Reflections on Illness (explores what illness can teach us about life, drawing on his experience having a heart attack and cancer) • Franzen, Jonathon. My Father's Brain (abstract of New Yorker story about his father and Alzheimer's disease, September 10, 2001) • Fries, Kenny, Body, Remember (a fascinating, beautifully written memoir of creating a life and identity based not only on being "different"--in Fries' case, being gay, Jewish, and very short, because he was born with incompletely formed legs). Contains explicit sex scenes. • Galli, Richard. Rescuing Jeffrey (an account of the gut-wrenching decisions Jeffrey's parents face in the ten days after an accident leaves him paralyzed from the neck down) • Gillies, Andrea. Keeper: One House, Three Generations, and a Journey into Alzheimer's (reviewed in the NY Times by Paula Span). • Gordon, Barbara. I’m Dancing as Fast as I Can (on her addiction to prescription drugs) • Gordon, Mary. Circling My Mother (Gordon's memoir of her Irish Catholic mother, deformed by polio, eventually suffering dementia — and of their complex mother-daughter relationship) • Gottlieb, Daniel.Learning from the Heart: Lessons on Living, Loving, and Listening. A family therapist with a radio call-in show, a newspaper columnist made quadriplegic by an accident decades ago, and author of Letters to Sam: A Grandfather's Lessons on Love, Loss, and the Gifts of Life (his autistic grandson -- a special-needs grandfather provides insights for his special-needs grandson)), Gottlieb urges self-acceptance as the road to happiness, not changing themselves or their circumstances. • Grandin, Temple. Emergence: Labeled Autistic (written with Margaret M. Scariano); Thinking in Pictures (the best-known of her books about growing up with autism); and Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior. Diagnosed autistic as a child, self-described as having Asperger's Syndrome more recently, Temple Grandin has probably done more than any other person to help people understand how it feels to be autistic, what "autism spectrum" means, and what special gifts and limitations autism may bring (in her case, understanding what animals need, which has created a unique professional niche for her, fascinating to read about). • Grant, Linda. Remind Me Who I Am, Again. About how her mother's vascular dementia (brought on by small strokes) exacerbates Grant's troubled relationship with the woman. • Grealy, Lucy. Autobiography of a Face (about growing up with Ewing's sarcoma, a cancer that severely disfigured her face) • Greenberg, Michael. Hurry Down Sunshine (memoir of his daughter's first manic episode, at 15, and how her bipolar disorder affects the family) • Hadas, Rachel. Strange Relation: A Memoir of Marriage, Dementia, and Poetry. Hadas's memoir of "losing" her husband to frontotemporal dementia. • Haddon, Mark. The Curious Incident of the Dog in the Night-Time (a work of fiction, not memoir, but it conveys insights from author's work with autistic children) • Hartlin, Angela. Forever Marked: A Dermatillomania Diary (Lulu.com). See also Pearls: Meditations on recovery from hair pulling and skin picking by Christina Sophia Pearson (CreateSpace). • Havemann, Joe. A Life Shaken:My Encounter with Parkinson's Disease • Hoblitzelle, Olivia Ames. The Majesty of Your Loving; A Couple's Journey Through Alzheimer's. Practical and spiritual wisdom about facing (together) a disease that changes who a person is or seems to be. • Hockenberry, John. Moving Violations: War Zones, Wheelchairs, and Declarations of Independence. An NPR journalist left paraplegic after a 1976 car accident writes about living life from a wheelchair--and about cultural differences in how people in various countries treat people with disabilities • Hoffman,Richard. Half the House (about child abuse) • Holzemer, Liz. Curveball: When Life Throws You a Brain Tumor (in her case, a baseball-sized meningioma — and remember, a brain tumor is different from brain cancer) • Hornbacher, Marya. Madness: A Bipolar Life. Hornbacher's memoir of her life with rapid cycling type 1 bipolar disorder, starting as a toddler when she couldn't sleep at night. • Hornbacher, Marya.Wasted: A Memoir of Anorexia and Bulimia . Written at 23 for young adults, this brutally candid memoir may "trigger" those still in grips or early stages of disease, say some readers, serving as a how-to guide for eating disorders. Good insight for families of those with ED. • Hull, John. Touching the Rock: An Experience of Blindness (from sight problems at 13, gradually becoming blind) • Hutchinson, Bryan L. One Boy's Struggle: A Memoir: Surviving Life with Undiagnosed ADD • Israeloff, Roberta. In Confidence: Four Years of Therapy • Jamison, Kay Redfield. An Unquiet Mind: A Memoir of Moods and Madness • Jezer, Marty. Stuttering: A Life Bound Up in Words • Johnson, Harriet McBryde. Too Late to Die Young: Nearly True Tales from a Life Born with a congenital neuromuscular disease, Johnson wants kids with disabilities to grow up "prepared to survive," not merely waiting to die, so she annually joined protestors against the Jerry Lewis muscular dystrophy telethon. (Read her story Unspeakable Conversations, her 2003 New York Times Magazine article about her conversations with Princeton professor Peter Singer about his beliefs that it might be better to kill some babies that might end up severely disabled, like her. • Kaysen,Susanna. Girl, Interrupted (a young girl's experiences with mental illness) • Kincaid, Jamaica. My Brother (account of her younger brother's death from AIDS) • Kingsley, Jason, and Mitchell Levitz. Count Us In: Growing Up with Down Syndrome • Kisor, Henry. What's That Pig Outdoors?: A Memoir of Deafness. Kisor, who lost his hearing at the age of three after a bout of meningitis, lipreads, does not sign, and never entered the subculture of the deaf. He writes of the problems a deaf person has learning to think in language, and with humor describes his life growing up in a hearing world -- the only deaf student at Trinity College, a graduate student at Northwestern, and book review editor for major newspapers. • Kleege, Georgina. Sight Unseen (marginally sighted and legally blind at 11 from macular degeneration, Kleege explores the meaning and implications of blindness and sightedness, reminding us that only a fraction of blind people see nothing at all) • Kriegel, Leonard. Flying Solo: Reimagining Manhood, Courage, and Loss. Kriegel came of age in the 1940s and 1950s, when childhood polio left him without the use of his legs. "In this unflinching yet lyrical memoir, Kriegel exalts an American mythic vision of mid-20th-century machismo. . . . Never pulling a punch, the would-have-been Bronx street fighter extols the manly virtues of anger, revenge and rage against the fates."--Publishers Weekly • Krieger, Susan. Things No Longer There: A Memoir of Losing Sight and Finding Vision. "Even before Krieger began losing her vision to a rare condition known as birdshot retinochoroidopathy, she had become fascinated by the idea that nothing remains as we recall it," wrote a Booklist reviewer. • Kupfer, Fern. Before and After Zachariah (about a brain-damaged child) • Kusz, Natalie. Road Song (fascinating memoir about growing up in Alaska, being mauled by a sled-dog, undergoing reconstructive surgery--but also a book about family, particularly a family living an off-the-map life because of a father's driven beliefs) • Crashing Through: The Extraordinary True Story of the Man Who Dared to See by Robert Kurson (NOT a memoir but it reads like one). The true story of Mike May, a highly successful entrepreneur, athlete, husband, and father who undergoes experimental surgery to regain the vision that he lost in a chemical explosion at age three. Fascinating insights into the nature of vision. • Kuusisto, Stephen. Eavesdropping: A Memoir of Blindness and Listening (in this sequel to Planet of the Blind, the author learns to live by ear) • Kuusisto, Stephen. Planet of the Blind (blind in one eye and nearly blind in the other, at his mother's urging he feigns sightedness until coming to terms with his condition) • Laborit, Emmanuelle. The Cry of the Gull. What it was like to grow up deaf in France, where sign language was banned as too sensual until 1976, well into Laborit's childhood; what it's like to communicate with others if you can't hear them; and how learning sign language made her life easier. (Read this is your child or student is deaf.) • Lachenmeyer, Nathaniel. The Outsider: A Journey into My Father's Struggle with Madness (in which the author tries to reconstruct his father's downward spiral from a promising career as a sociology professor to his death as a schizophrenic vagrant, eluding police) • Lang, Jim. Learning Sickness: A Year with Crohn's Disease • Lear, Martha Weinman. Heart-Sounds: The Story of Love and Loss (heart disease) • Levy, Andrew. A Brain Wider Than the Sky: A Migraine Diary ("part memoir, part historical inquiry, part philosophical meditation") • Lewis, Cathleen.Rex: A Mother, Her Autistic Child, and the Music that Transformed Their Lives (the moving story of a mother and her child, a boy who is blind, autistic, and a musical savant) • Lewis, Mindy. Life Inside (diagnosed as schizophrenic at 15, kept in a psychiatric hospital till 18, recovering for decades, believing she was never schizophrenic) • Linton, Simi. My Body Politic: A Memoir . Carol Tavris (author of Anger: The Misunderstood Emotion ) wrote of Linton's memoir: "Witty, original, and political without being politically correct, introducing us to a cast of funny, brave, remarkable characters (including the professional dancer with one leg) who have changed the way that 'walkies' understand disability. By the time Linton tells you about the first time she was dancing in her wheelchair, you will feel like dancing, too." • Mairs, Nancy. Waist-High in the World: A Life Among the Nondisabled (wheelchair-bound from advancing multiple sclerosis, she offers "a Baedeker for a country to which no one travels willingly"). • Manguso, Sarah. The Two Kinds of Decay. A poet's memoir of the rare autoimmune disease called CIDP, which would turn her body against itself, interrupting her life in prolonged illness. "In simple, unsentimental language, she describes her initial symptoms, her sudden attacks, her treatments, her suicidal depression, and her progress as a patient and, incidentally, as a person," wrote a Boston Globe reviewer • Maurice, Catherine. Let Me Hear Your Voice: A Family's Triumph Over Autism • McDonnell, Jane Taylor. News from the Border: A Mother's Memoir of Her Autistic Son • McKee, Steve. My Father’s Heart: A Son’s Journey (a tender memoir about suburban life in York, PA and Buffalo, NY -- in the 1960s, in every sense a “family history,” shedding light on heart disease, especially as inherited in families). Check out Steve McKee’s blog , too. • McLean, Richard. Recovered, Not Cured: A Journey Through Schizophrenia (a brief, readable memoir by a gay Australian artist whose drawings vividly illustrate the story he tells about his life and mind with schizophrenia) • Monette, Paul. Borrowed Time, Becoming a Man, and Last Watch of the Night (a gay man battles AIDS) • Monks, Millicent. Songs of Three Islands: A Story of Mental Illness in an Iconic American Family. A memoir of the Carnegie family, also written about by Lisa Belkin in the Times story, One Family and Its Legacy of Pain (8-11-10) • Neugeboren, Jay. Imagining Robert: My Brother, Madness, and Survival: A Memoir (his brother's 30-year struggle with mental illness) • Neugeboren, Jay. Open Heart: A Patient's Story of Life-Saving Medicine and Life-Giving Friendship • Nixon, Shelley. From Where I Sit: Making My Way with Cerebral Palsy • Ototake, Hirotada. No One's Perfect . Born with no arms or legs, Ototake participated in school athletics and became an activist for disability rights in Japan, a country that traditionally hid the disabled from public view. An inspiring memoir that became a bestseller in Japan. • Park, Clara Claiborne. The Siege: A Family's Journey Into the World of an Autistic Child (the First Eight Years of an Autistic Child's Life by the mother) • Pearson, Christina Sophia. Pearls: Meditations on recovery from hair pulling and skin picking by Christina Sophia Pearson (CreateSpace). Search for more information about hairpulling using the term Tricotillomania. • Peterson, Alice. Another Alice. Peterson got rheumatoid arthritis at 18, at the start of a promising tennis career • Phillips, Jane. The Magic Daughter: A Memoir of Living with Multiple Personality Disorder • Rapp, Emily. Poster Child: A Memoir. Born with a shortened leg that later required amputation, Rapp became a poster child for the local March of Dimes--a vivid depiction of what it is like to live with a "grievous flaw," and finally to accept it. • Rhett, Kathryn, ed. Survival Stories: Memoirs of Crisis • Richmond, Lewis. Healing Lazarus: A Buddhist’s Journey from Near Death to New Life (viral encephalitis sends him into coma, and in recovery he experiences an acute neuropsychiatric complication from a therapeutic drug) • Robinson, Jill. Past Forgetting: My Memory Lost and Found ( a compelling account of severe memory loss as the result of a seizure, by a fine novelist who grew up in Hollywood , as daughter of writer and film executive Dore Schary) • Robison, John Elder. Look Me in the Eye: My Life with Asperger's (an interesting book made more so by the fact that he is the brother of Augusten Burroughs, author of Running with Scissors, and tells from a different angle some of the same stories from their bizarre childhood) • Roth, Philip. Patrimony (about a father's illness and about the father-son relationship) • Rothenberg, Laura. Breathing for a Living (making the most of life with cystic fibrosis that takes her life at 22) • Ricker, Allen. The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life. At 51, this TV writer became a victim of transverse myelitis, a rare neurological disorder that left him paralyzed from the waist down. A "potent memoir" and a guidebook for anyone who is disabled, writes Publishers Weekly reviewer. • Sacks, Oliver. Migraine • Saks, Elyn. The Center Cannot Hold: My Journey Through Madness (a fascinating memoir of the internal chaos and external unfairness that have made a life with schizophrenia so difficult for this professor of law and psychiatry, and of the talk therapy—indeed, psychoanalysis—she felt was as important as medication in helping her live a high-functioning life as a professor of law and psychiatry) • Sarton, May. After the Stroke (the poet's journal about recovering from a mild stroke when she is in her seventies) • Scheff, David. Beautiful Boy: A Father's Journey Through His Son's Addiction (chronicling a precocious teenager's spiral downward from abuse of mind- and mood-altering drugs to meth addiction) • Scheff, Nic. Tweak: Growing Up on Methamphetamines (the son's story, companion book to Beautiful Boy) • Schreber, Daniel Paul. Memoirs of My Nervous Illness (memoirs of madness, as recalled a century ago during confinement In a German mental asylum) • Shawn, Allen. Wish I Could Be There: Notes from a Phobic Life — part memoir, part explanation, a beautifully written and fascinating account of Shawn's own anxiety and agoraphobia, and a fine summary of what is known about how we form and can learn to manage anxiety and phobias. • Shields, David. The Thing About Life Is That One Day You'll Be Dead (personal history melds with riveting biological info about the body at every stage of life — an "autobiography of the body") • Shreve, Susan Richards. Warm Springs: Traces of a Childhood at FDR's Polio Haven (an "indelible portrait of the psychic fallout of childhood illness"). • Sidransky, Ruth. In Silence: Growing Up Hearing in a Deaf World • Sienkiewicz-Mercer, Ruth and Steven B. Kaplan. I Raise My Eyes to Say Yes. (Encephalitis at 5 weeks left Ruth, a healthy baby, paralyzed and unable to speak normally. Diagnosed an imbecile at 5 years, she was eventually institutionalized and severely mistreated at a school for the mentally and physically disabled until a staff turnover brought her help, including a method for communicating.) • Skloot, Floyd. The Night-Side: Chronic Fatigue Syndrome and the Illness Experience (an account of how a mysterious and life-altering illness struck overnight, dramatically changing Skloot's life, and how he dealt with it); a later memoir, in the Shadow of Memory, contains essays about Skloot's experience of losing his memory after being infected by a virus and struggling to regain lost memories. • Solomon, Andrew. Noonday Demon: An Atlas of Depression • Sontag, Rachel. House Rules: A Memoir (how Sontag survived growing up in a dysfunctional family ruled by her controlling doctor father -- her mother advised her to watch what she said as her father was recording her phone calls) • Spradley, Thomas S. and James P. Deaf Like Me (parents of a child born deaf as the result of an epidemic of German measles waste years avoiding sign language before learning how to communicate with their child) • Stacey, Patricia. The Boy Who Loved Windows: Opening The Heart And Mind Of A Child Threatened With Autism. PW calls this "a sharply observed, deeply personal account of her son Walker's metamorphosis from a worryingly unresponsive infant to an intelligent, normally functioning child." Stacey spends a huge amount of time following child psychiatrist Stanley Greenspan's "floor time" strategy for Walker: several hours a day of rigorous interactive playtime between parent and child (see The Child With Special Needs). • Steinem, Gloria. "Ruth's Song, Because She Could Not Sing It," in Outrageous Acts and Everyday Rebellions (about childhood with a mentally ill mother) • Styron, William. Darkness Visible (about his struggle with crippling depression) • Sutcliff, Rosemary. Blue Remembered Hills: A Recollection (the memoir of one of Britain’s best-loved historical novelists, crippled and badly disabled from the age of three by Still’s Disease, a form of juvenile arthritis) • Tammet, Daniel. Born on a Blue Day (memoir of a life with synaesthesia and savant syndrome, a rare form of Asperger's syndrome) • Taylor, Blake E.S. ADHD & Me: What I Learned from Lighting Fires at the Dinner Table. Memoir and lessons learned by a college freshman, diagnosed with attention deficit hyperactivity disorder (ADHD) when he was five • Taylor, Jill Bolte. My Stroke of Insight: A Brain Scientist's Personal Journey (a story that provides hope for the brain-injured, not just those who have had a stroke, as this young brain scientist did) • Wakefield, Darcy. I Remember Running: The Year I Got Everything I Ever Wanted-and ALS. Wakefield discovers she has amyotrophic lateral sclerosis (ALS), the incurable, progressive neuromuscular degeneration known as Lou Gehrig's disease, at age 33, when she also meets Mr. Right. She writes of her losses (walking, speech) and gains (love, a new home, a long-desired pregnancy). Listen to her on NPR, also: ALS Ends Running Days and Life with Lou Gehrig's Disease. http://www.npr.org/templates/story/story.php?storyId=4854875 • Walker, Lou Ann. A Loss for Words: The Story of Deafness in a Family • Waxman, Robert and Linda. Losing Jonathan (losing a beloved child to drugs) • Wexler, Alice. Mapping Fate: A Memoir of Family, Risk, and Genetic Research (on Huntington's Disease) • Wilensky, Amy S. Passing for Normal (a compelling account of life with a long-delayed diagnosis of Tourette's syndrome and obsessive-compulsive disorder — and an "exploration of the larger themes of difference and the need to belong") • Willey, Liane Holliday. Pretending to Be Normal: Living with Asperger's Syndrome (a mother's account of her own and her daughter's life with Asperger's syndrome) • Williams, Donna. Nobody Nowhere (growing up as an autistic child, and a far different story from others listed here) • Wilson, A.N. Iris Murdoch As I Knew Her. A literary memoir that portrays "Murdoch as novelist & thinker, not Alzheimers poster child," as one reviewer put it, by contrast with the books by Murdoch's husband, John Bayley, especially Elegy for Iris. • Wurtzel, Elizabeth. Prozac Nation: Young and Depressed in America (atypical depression and bouts with drugs) • Young, Joan W.. Wish by Spirit: A journey of recovery and healing from an autoimmune blood disease. Joan contended with immune (idiopathic) thrombocytopenic purpura (ITP) but this may be helpful for anyone with a platelet disorder or anyone exploring alternative therapies. Joan's recovery required a total makeover of her lifestyle and daily practices, but I've seen her dancing -- she recovered, looks great, dances beautifully (at Glen Echo, where I got to know her). 
• Bolen, Jean Shinoda. Close to the Bone: Life-Threatening Illness As a Soul Journey • Donague, Paul H., and Mary Elizabeth Siegel. Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness • Edwards, Laurie. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties • Fox, Michael J. Always Looking Up: The Adventures of an Incurable Optimist (about finding the opportunities that arise--including a new closeness with his family--when struck by a disease like Parkinson's) • Freed, Rachael. Freed's, Heartmates: A Guide for the Spouse and Family of the Heart Patient (a self-help book for women dealing with chronic and life-threatening illness) • Groopman, Jerome. The Anatomy of Hope: How People Prevail in the Face of Illness • Hallowell, Edward M.and John J. Ratey. Driven To Distraction: Recognizing and Coping with Attention Deficit Disorder from Childhood Through Adulthood (or, for those who have trouble reading, the small-byte-sized Answers to Distraction. Both available as books on tape. Read an excerpt from their book Delivered from Distraction: Getting the Most out of Life with Attention Deficit Disorder. The authors, both professionals, also have ADD. • Hartwell, Lori. Chronically Happy: Joyful Living In Spite Of Chronic Illness • Hodgdon, Linda A. Visual Strategies for Improving Communication : Practical Supports for School & Home (helpful for students with autism) • Jergen, Robert. The Little Monster: Growing Up With ADHD by Robert Jergen. (Read the preface) • Johnson, Hillary. Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic • Jones, Sue. Parting the Fog: The Personal Side of Fibromyalgia/Chronic Fatigue Syndrome • Kabat-Zinn, Jon. Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. Kabat-Zinn, founder of the Stress Reduction Clinic at the University of Massachusetts Medical Center, is perhaps the best-known proponent of using "practiced mindfulness" to control and calm our responses without blunting our feelings, to help patients deal with stress and chronic illness. • Kasper, Edward K. and Mary Knudson. Living Well with Heart Failure, the Misnamed, Misunderstood Condition • Kelly, Julie W. Taking Charge of Fibromyalgia: Everything You Need to Know to Manage Fibromyalgia, fifth edition (get whichever is most recent, for updates) • Sacker, Ira M. Dying to Be Thin:Understanding and Defeating Anorexia Nervosa and Bulimia--A Practical, Lifesaving Guide • Silver, Marc.Success with Heart Failure: Help and Hope for Those with Congestive Heart Failure (and check out the low-salt, no-salt cookbooks while you are looking at reviews of this book) • Sveilich, Carol. Just Fine: Unmasking Concealed Chronic Illness And Pain (a "comfort" book, more than a "coping" book, writes reviewer Margy Squires) • Teitelbaum, Jacob. From Fatigued to Fantastic (a guide to treating chronic fatigue and fibromyalgia) • Torrey, E. Fuller. Surviving Schizophrenia: A Manual for Families, Consumers, and Providers ("comprehensive, realistic, and compassionate"--required reading, well-written, and frank about people and approaches that have not benefited patients with this problem) • Weintraub, Pamela. Cure Unknown: Inside the Lyme Epidemic • Wells, Susan Milstrey. A Delicate Balance: Living Successfully with Chronic Illness. Milstrey’s problems: Sjögren's syndrome (an autoimmune disease that dries the eyes and mouth), fibromyalgia (a painful muscle disorder), and interstitial cystitis (a chronic inflammation of the bladder). |
Chronic Illness Initiative (DePaul University School for New Learning, Facebook page)
Reaching Students With Chronic Illness (Elizabeth Redden, Inside Higher Education, 11-8-07). National Invisible Chronic Illness Awareness Week Tune In to Music Therapy's Healing Powers (Sally Abrahms). See how making and playing music helps both those with Alzheimer’s and their family caregivers. It also works for other kinds of brain damage. Watch the video of Gabby Giffords--singing song lyrics; she couldn't retrieve the same words when not singing.
“Recovery means being able to manage my illness to the point that you don’t know I’m schizophrenic unless I tell you.”
— from the NAMI report card on the states (you can click on Full Report to get full PDF file) Suicide Help Online
http://www.hopeline.com http://www.spanusa.org Suicide Hotlines 1-888-649-1366 1-800-SUICIDE 1-800-784-2433 “During a crisis, the human tendency is to revert to a survival mentality and, if we’re parents, to protect our children. But raising children is not only about protection. It is also about growth for both parent and children. . . . Real life has always demanded that both parents and children tolerate uncertainty and learn to bear inevitable tensions: between attachment and separation, illusion and disillusion, stability and change, health and sickness. And the human condition demands that parents do it all against the inescapable backdrop of mortality, perceiving the whole of reality while maintaining compassion, optimism, and hope....
“A common, unrealistic parental expectation is wanting life for our children to be simple and smooth when the human condition and the core of mothering are characterized by contradiction, ambivalence, and paradox. Perhaps mothers can find comfort in knowing that perfect security and perfect mothering are neither attainable nor desirable. Children have always suffered. Mothers have never been forever.” ~ Linda Blachman, in Another Morning: Voices of Truth and Hope from Mothers with Cancer "He began to collect vintage jazz records and in no time knew all the musicians and the groups they had played with. But this time he didn't 'display' his knowledge the way he always had before, the way, I'd read, most autistic kids did as a substitute for real conversation."
~ Judy Barron, writing about her son Sean's emergence from autism in There's a Boy in There, a fascinating account of a boy's childhood with autism, told by both mother and son "Many people with Asperger's have an affinity for machines. Sometimes I think I can relate better to a good machine than any kind of person. I've thought about why that is, and I've come up with a few ideas. One thought is that I control the machines. We don't interact as individuals. No matter how big the machine, I am in charge. Machines don't talk ack. They are predictable. They don't trick me, and they're never mean.
"I have a lot of trouble reading other people. I am not very good at looking at people and knowing whether they like me, or they're mad, or they're just waiting for me to say something. I don't have problems like that with machines." ~ John Elder Robison, in Look Me In the Eye: My Life with Asperger's, p. 151 "In a culture which loves the idea that the body can be controlled, those who cannot control their bodies are seen (and may see themselves) as failures."
~Susan Wendell, “Toward a Feminist Theory of Disability” "Students who struggle with illnesses that unpredictably increase and decrease in severity such as asthma, chronic fatigue syndrome, lupus, rheumatoid arthritis, or illnesses with frequent hospitalizations such as cancer or heart disease, may have found it difficult, if not impossible, to meet the requirements of a conventional college program....A chronic illness is one that typically involves waxing and waning symptoms that interfere with the student’s ability to physically engage successfully in a college program." ~ The Chronic Illness Initiative
“Although telling someone they look good is often seen as a compliment,it feels like an invalidation of the physical pain or seriousness of one’s illness and the suffering they cope with daily.”
~Lisa Copen, founder of National Invisible Chronic Illness Awareness Week, "Within a month of signing my appointment papers to become an assistant professor of psychiatry at the University of California at Los Angeles, I was well on my way to madness. Within three months, I was manic beyond recognition. And just beginning a long, costly, personal war against medication that I would in a few years time be strongly encouraging others to take. "My illness and my struggle against the drug that ultimately saved my life and restored my sanity had been years in the making. For as long as I can remember, I was frighteningly although often wonderfully beholden to moods. Intensely emotional as a child, mercurial as a young girl, first severely depressed as an adolescent and then unrelentingly caught up in the cycles of manic-depression by the time I began my professional life. I became both by necessity and intellectual inclination a student of moods. It has been the only way I know to understand and indeed to accept the illness I have. It has also been the only way I know to try to make a difference in the lives of others who also suffer from mental illness." Kay R. Jamison, PhD, An Unquiet Mind: Personal Reflections on Manic-Depressive Illness " |
