Not necessarily in that order
Resources on illness, death and dying, loss, grief, and positive aging

Selected Works

Enjoying the golden years
Including suicide and assisted suicide
Plus memorials and requiems
(resources for specific diseases, conditions, syndromes)
Narrative medicine (or medical narrative) Memoirs of illness, crisis, disability, differentness, and survival
Assisted living, nursing homes, cohousing, or living in place (with or without caregivers)
(and donating your body or body parts)

Coping with chronic, rare, and invisible diseases and disorders

Helpful websites and other resources

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!

Rare and undiagnosed diseases

National Organization for Rare Disorders (NORD)
NIH Office of Rare Diseases Research (ORDR)
Undiagnosed Diseases Network (UDN -- NIH, The Common Fund)
Disease InfoSearch (Genetic Alliance)
Expanding the limits of modern medicine (Raymond MacDougall, Division of Intramural Research, NIH). NIH Undiagnosed Diseases Network will address abundance of mystery cases
How to find a disease specialist (National Center for Advancing Translational Sciences)
One of a Kind (Seth Mnookin, New Yorker, 7-21-14) What do you do if your child has a condition that is new to science? when you learn your child could die from a disease with no other known sufferers? Seth Mnookin follows a family battling a rare genetic 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)
NORD member organizations (alphabetical list, with links)
Rare Disease Database (National Organization for Rare Disorders) (NORD)
Index of Rare Diseases (Health on the Net Foundation, formerly Orphanet) a European database, in several languages
Patient Organizations Database(NORD)
OrphaNet (the portal for rare diseases and orphan drugs)
Living with Rare Diseases (NORD)
Rareshare (social hub building communities for patients, families, and healthcare professionals affected by rare disorders)
Medscape Reference
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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.
A Natural Fix for A.D.H.D. (Richard A. Friedman, Opinion, NY Times, 10-31-14) A positive way of looking at what many view as a medical problem in young people. "...let’s not rush to medicalize their curiosity, energy and novelty-seeking; in the right environment, these traits are not a disability, and can be a real asset."
• 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)
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Addiction, including alcoholism

See also Eating disorders

The addiction paradox (Bruce Bower, Science News, 3-7-14). Drug dependence has two faces — as a chronic disease and a temporary failure to cope
Here’s What’s Wrong With How US Doctors Respond to Painkiller Misuse(Maia Szalavitz, Substance.com, 1-13-15). Too often, Americans with painful medical conditions who misuse pain pills like Oxycontin are denied further treatment and even prosecuted. There are more effective, enlightened responses—as the UK has shown for decades.
Should Even Heroin Be Legal? (Andrew Sullivan, The Dish, part 1 of book club discussion of Johann Hari's book Chasing the Scream: The First and Last Days of the War on Drugs. See also part 2. "In Chasing the Scream, Hari reveals his startling discoveries entirely through the true and shocking stories of people across the world whose lives have been transformed by this war. They range from a transsexual crack dealer in Brooklyn searching for her mother, to a teenage hit-man in Mexico searching for a way out. It begins with Hari’s discovery that at the birth of the drug war, Billie Holiday was stalked and killed by the man who launched this crusade – while it ends with the story of a brave doctor [in Portugal] who has led his country to decriminalize every drug, from cannabis to crack, with remarkable results."
Hooked: Tracking Heroin's Hold on Arizona, a special investigative report and documentary produced by advanced journalism students at the Walter Cronkite School of Journalism and Mass Communication on the growing perils of heroin and opioid use (Cronkite News Online, 1-13-15). As the drug pours into the state, an epidemic of addiction threatens a generation of young people, their families and friends. Many pieces here.
Crack baby myth goes up in smoke (Todd Reed, America Tonight, Aljazeera, 3-10-15). A Philadelphia study found no gap in health and life outcomes for babies exposed to crack versus ones who weren’t. Poverty, however, posed a major risk.
Down The Rabbit Hole: A Chronic Pain Sufferer Navigates The Maze Of Opioid Use (Janice Lynch Schuster, My Narrative Matters, Health Affairs, July 2014). Read full story.
The Likely Cause of Addiction Has Been Discovered, and It Is Not What You Think (Johann Hari, author of Chasing the Scream: The First and Last Days of the War on Drugs, Huffington Post, 1-20-15)
Two Acres of Hope for Recovering Addicts (Cara Buckley, NY Times, 8-14-09)
Killer Drugs: Tackling Opioid Addiction And Overdose (Kristin Gourlay, Rhode Island Public Radio). Also of interest: RI Hospital ER Chief: "There has to be a better way." (about a Rhode Island plan to open a sobering center in Providence, to move people who simply need to sober up out of the emergency room, to a place where they can be offered substance abuse treatment and other resources, like housing. Says Brian Zink, that would save money and free up beds, and would mean that addicts get more appropriate treatment.
For teens with opioid use disorders, buprenorphine maintenance better than detox (Alison Knopf, Alcoholism Drug Abuse Weekly, 11-24-14)
The drug Suboxone could combat the heroin epidemic. So why is it so hard to get? (Susan Svrluga, Washington Post, 1-13-15)
Dying To Be Free (Jason Cherkis, Huff Post, 1-28-15) There’s A Treatment For Heroin Addiction That Actually Works. Why Aren’t We Using It?
Alcoholism In-Depth Report (NY Times)
Closing the Addiction Treatment Gap) (CATG, 'Addiction is a disease. Let's treat it that way.") A national program of the Open Society Institute, founded in 2008. This PDF is a 2010 report on three-year $10 million effort to expand treatment by expanding insurance coverage, increasing public funding, and making systems and programs more efficient.
Trading Alcoholism for Sugar Addiction: Here’s the Not-So-Sweet Truth (Promises Treatment Center). See also The Importance of Nutrition in Addiction Recovery
Exercise: Alternative reward for those battling addiction (James Fell, Chicago Tribune, 6-12-13)
The Neurobiology of Cocaine Addiction (Eric J. Nestler, NCBI, Sci Pract Perspect. Dec 2005; 3(1): 4–10).
The D.S.M. Gets Addiction Right (Howard Markel, Opinion, NY Times, 6-5-12)
Alcoholism: The Science Made Easy (free, Addiction Technology Transfer Center Network)
Crack: The Drug That Consumed the Nation's Capital (listen online to WAMU-FM, NPR). 25 years ago, dealers sold crack at hundreds of open-air drug markets, addiction swept across entire neighborhoods, and D.C. came to be known as the "Nation's Murder Capital." In this five-part series, WAMU 88.5 explores the legacy of that era and how D.C. continues to grapple with an epidemic that affected families, neighborhoods, politicians, policemen, and schools. Read transcript here.
Effective Addiction Treatment (Jane Brody, NY Times, 2-4-13)
Addiction Medicine: Closing the Gap Between Science and Practice (CasaColumbia, June 2012) “Only a small fraction of individuals receive interventions or treatment consistent with scientific knowledge about what works.”
A Mother's Perspective on Her Son's Addiction (Angela Haupt, US News, her half of a two-part series, 7-24-13). Anita Devlin’s son was a drug addict. She explains how she helped him get better.
One Man's Story: How I Beat Addiction Mike Devlin overcame his addiction to painkillers, cocaine, heroin and more. He shares his story. (Newsweek, his half of a two-part series, 7-24-13)
Alcoholism and alcohol abuse (Medline Plus)
Does Alcoholics Anonymous Work? (Scott O. Lilienfeld and Hal Arkowitz, Scientific American 2-17-11) For some heavy drinkers, the answer is a tentative yes
After 75 Years of Alcoholics Anonymous, It's Time to Admit We Have a Problem (Maia Szalavitz, Pacific Standard, 2-10-14) Challenging the 12-step hegemony -- a review of several books on addiction treatment and thereby a survey of treatment. Definitely read this one.
A New Scientific American eBook, Understanding Addiction, Examines the Multifaceted Issue of Substance Abuse (9-17-13)
The pseudo-science of Alcoholics Anonymous: There’s a better way to treat addiction (Dr. Lance Dodes and Zachary Dodes, Salon, 3-23-12). An excerpt from their book The Sober Truth: Debunking the Bad Science Behind 12-Step Programs and the Rehab Industry. Read the comments on Amazon, for views pro and con, including "one size does not fit all."
Addiction Recovery Basics
Faces & Voices of Recovery (FAVOR) (why living in safe, sober and peer supportive environments matters in recovery) Faces & Voices believes that our nation’s response to the crisis of addiction should be based on sound public health science and the grassroots engagement and involvement of the recovery community – people in recovery, their families, friends and allies – organized in identifiable and mobilized networks of recovery community and allied organizations that foster collaboration, advocacy and public education about the reality of addiction recovery.
ManyFaces1Voice No longer will we remain silent. We want to sensationalize recovery, because recovery is sensational." Together we will change public perception, and ultimately the public response to the addiction crisis.
One Hundred Years Ago Today, Prohibition Began in Earnest. We’re Still Paying. (Maia Szalavitz, Substance.com, 12-17-14). On December 17, 1914, Congress passed the Harrison Act, making nonmedical opium and cocaine illegal. It was really about punishment, not public health. And it set the tone for a disastrous century.

I’m Dancing as Fast as I Can (Barbara Gordon on her addiction to prescription drugs)
Beautiful Boy: A Father's Journey Through His Son's Addiction (David Scheff chronicling a precocious teenager's spiral downward from abuse of mind- and mood-altering drugs to meth addiction)
Double Double: A Dual Memoir of Alcoholism, mystery novelist Martha Grimes and her son Ken Grimes' memoir about alcoholism, creeping up on them until in 1990 they faced the problem and dealt with it, she at a rehab clinic, he through a 12-step program.
Mother Daughter Me: A Memoir by Katie Hafner. "“Weaving past with present, anecdote with analysis, [Katie] Hafner’s riveting account of multigenerational living and mother-daughter frictions, of love and forgiveness, is devoid of self-pity and unafraid of self-blame." (Cathi Hanauer, in Elle)
A Drinking Life: A Memoir by Pete Hamill. As a child during the Depression and World War II he learned that drinking was to be an essential part of being a man, it was only later he discovered its ability to destroy lives.
Dry: A Memoir by Augusten Burroughs. "Imagine coming home to find hundreds of empty scotch bottles and 1,452 empty beer bottles in your apartment. This is what Burroughs (Running with Scissors) encountered upon returning from Minnesota's Proud Institute (supposedly the gay alcohol rehab choice). "--Publishers Weekly
Drinking: A Love Story by Caroline Knapp. "Freelance journalist Knapp began drinking in her early teens and continued unabatedly until she "hit bottom" in 1995 and checked herself into a rehab at the age of 36....a confession utterly devoid of self-pity, an extraordinarily lucid and very well-written personal account of a common addiction that is filled with insights as well as a comprehensive treatment of the subject." --Publishers Weekly
(more to come)
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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)

We Know How This Ends: Living While Dying by Bruce H. Kramer with Cathy Wurzer ("a dignified, courageous, and unflinching look at how acceptance of loss and inevitable death can lead us all to a more meaningful and fulfilling life.")
Forgiving the Body: Life with ALS (On Being with Krista Tippett, interviewing Bruce Kramer, Minnesota Public Radio) From the moment of his diagnosis with ALS, Bruce Kramer began writing — openly, deeply, and spiritually — about his struggle, as he puts it, to live while dying. He died on March 23, 2015, while we were in production on this show. His words hold abiding joy and beauty, and reveal an unexpected view opened by this disease.
The Beauty Revealed by ALS. Bruce Kramer chronicled his journey in over 30 interviews with Minnesota Public Radio's Cathy Wurzer and on his blog, Dis Ease Diary
A Historian's Long View On Living With Lou Gehrig's (Terry Gross interviews Tony Judt, NPR, 3-29-10). Listen or read transcript. "In 2008, historian Tony Judt was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. ALS is a progressive motor-neuron disease that causes the central nervous system to degenerate. Over time, patients lose the ability to move their bodies, but retain full control over their minds. Judt describes the effects of the disease as 'progressive imprisonment without parole.'"
About ALS (ALS Association)
n=2 (nequals2.com) (Paul Aiken's blog, trying to turn anecdotes into data, mostly collecting and disseminating information on the treatment of Lou Gehrig's disease). Paul, who at 54 and executive director of the Authors Guild, learned he had ALS and decided to make his health records public, as part of a campaign to disseminate all available information about the disease. Read Paul Aiken's story, so far. Follow what he learns via the n=2 twitter feed.
The Urgency of Now: Petition the FDA to Approve Breakthrough ALS Drug (Paul Aiken, N=2, 1-15-15) In clinical trials, Genervon’s GM6, the “master regulator of the human nervous system,” shows disease-modifying results for ALS and Parkinson’s Disease patients.
ALS Today , ALS Therapy Development Institute
MND Association, the Motor Neuron Disease Association (MNDA). See, for example, Newly Diagnosed?
Team Cure ALS
ALS Public Policy (advocacy)
MDA ALS Caregiver's Guide
My ALS Remission Story by Ernie Schmid, who started Paul Aiken (see above) on his search for help.
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)
Loss of Speech Evokes the Voice of a Writer--A.L.S. Rewrites a Retiree's Dream (Peter Applebome, NY Times, 3-6-11). “As my muscles weakened, my writing became stronger,” he wrote recently in an unpublished essay. “As I slowly lost my speech, I gained my voice. As I diminished, I grew. As I lost so much, I finally started to find myself.”
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.
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)
Genetic mutation linked to inherited forms of ALS, dementia (NIH News, 9-28-11)
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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.

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)
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 other autoimmune diseases

(related diseases: chronic fatigue syndrome, fibromyalgia, Graves' disease, Hashimoto's disease, inflammatory bowel disease, lupus, myasthenia gravis)

Arthritis Foundation (800-568-4045)
Autoimmune Disease and Rheumatoid Arthritis (Web MD)
Autoimmune diseases fact sheet
What is arthritis? (Home Instead Senior Care and the Arthritis Foundation). Part 1 of 7-part arthritis education series, which also covers symptoms and warning signs, diagnosis and care, common treatments, prevention and living with arthritis, coping and support for sufferers and caregivers, help and research.
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)
Answers About Rheumatoid Arthritis, Part 1 by Dr. Vivian P. Bykerk. Rheumatoid arthritis is a disease that often starts in middle age and is more common in women. Part 2 is here and Part 3 is here .
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).
What can I do about my rheumatoid arthritis? (Patient Power) Read helpful transcripts.
OT (a poem by retired physician Maggie Westland who has found more pain relief and improvement of function from occupational therapy for chronic advanced osteoarthritis than from other types of treatment)
BOOKS about autoimmune disease(s)

• 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)
• Young, Joan W. Wish by Spirit:A Journey of Recovery & Healing From an Autoimmune Blood Disease. Joan shares what she has learned about living with immune thrombocytopenia (ITC, a low blood platelet disease), including becoming your own medical advocate.
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Autism spectrum disorders

Ido in Autismland: Climbing Out of Autism's Silent Prison by Ido Kedar "opens a window into non-verbal autism through dozens of short, autobiographical essays each offering new insights into autism symptoms, effective and ineffective treatments and the inner emotional life of a severely autistic boy. In his pithy essays, author Ido Kedar, a brilliant sixteen year old with autism, challenges what he believes are misconceptions in many theories that dominate autism treatment today while he simultaneously chronicles his personal growth in his struggles to overcome his limitations."
This Dad Knew Exactly What to Do When His Autistic Son No Longer Qualified for Services (Liz Palmer, 22 Words, 2-27-15) "He worries about what will happen to him when he hits 22 and “flies off the cliff”…the cliff of services, support. This is a reality for the autistic community. At 22 you age out. No supports. Few opportunities. A lack of purpose. And sometimes no hope." "So he came up with a crazy idea." Let this inspire others!
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
Loving Lampposts: Living Autistic (DVD and can be viewed on Amazon Prime). Todd Drezner's highly rated documentary about autism, how society views the diagnosis, and how that affects the way autistic people are treated (personally and medically). He examines two movements--the "recovery movement," which views autism as an epidemic brought on by environmental toxins, and the "neurodiversity movement," which argues for accepting autism and supporting autistic people).
Autism News Beat (an evidence-based resource for journalists, which has a blog roll along the right side, down a bit). See, for example, Live blogging the autism hearing (Autism News Beat 5-20-14)
How Will I Know You're Not Dead? (Raymond Abbott, Pulse, 4-10-15). See also I'm happy (Pulse, 1-2-15). A social worker's lovely stories about Donald, a client with Asperger’s and Tourette’s).
National Network for Immunization Information (NNii)
The Kids Who Beat Autism (Ruth Padawer, NY Times Magazine, 7-31-14) New research suggests that one in 10 autistic children sheds symptoms before adulthood. But no one knows why they do — or why others do not. This fascinating story, which among other things discusses A.B.A. therapy, a form of behavioral therapy, emphasizes autism's complexities--including what some kids feel when their symptoms, including arm flapping, go away. “When I was little, pretty often I was the happiest a person could be," says Carmine DeFloria. "It was the ultimate joy, this rush in your entire body, and you can’t contain it. That went away when my sister started teasing me and I realized flapping wasn’t really acceptable. Listening to really good music is the main time I feel that joy now. I still feel it in my whole body, but I don’t outwardly react to it like I used to.” See also Padawer's answers to Readers’ Questions About Children Who Beat Autism.
One Smart Bookie (Jack El-Hai, The Atlantic, May 2001) "He can't tell right from wrong." Jack profiles Max Weisberg, a man with savant syndrome—"someone who has special abilities that stand in stark contrast to his overall handicap... He made legal history when he hired a criminal defense attorney who asserted that Max’s disabilities made him incapable of distinguishing right from wrong."
Extraordinary People : Understanding Savant Syndrome by Darold A. Treffert, author also of Islands of Genius: The Bountiful Mind of the Autistic, Acquired, and Sudden Savant
Don't Mourn for Us (Jim Sinclair, Autism Network International newsletter,1993). As quoted in Ruth Padawer's article, "Autism, Sinclair wrote, “colors every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person — and if it were possible, the person you’d have left would not be the same person you started with. . . . Therefore, when parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist and I had a different (nonautistic) child instead.’ . . . This is what we hear when you pray for a cure.”
Autistic Self-Advocacy Network (ASAN), a national group run by and for autistic adults ("nothing about us without us")
The Frowners (RadioLab, 12-29-08) Ever since Emanuel Frowner was a little boy, Emanuel was... different. He had trouble making friends. He had trouble looking you in the eye. His brother thought he needed psychological help, but his dad didn’t think there was anything seriously wrong, and worried that a diagnosis would hold him back. Flash forward 25 years, Emanuel’s now a grown man who’s sought a psychological diagnosis. What he finds out will change everything. But the tough question remains, did his dad’s attitude end up helping or hurting him in the end? Reporter Gregory Warner takes us on a search for answers. And do read the comments.
The Geek Syndrome (Steve Silberman, Wired, Autism--and its milder cousin Asperger's syndrome--is surging among the children of Silicon Valley. Are math-and-tech genes to blame? Fascinating overview of recent history.
Aspergirls: Empowering Females With Asperger Syndrome by Rudy Simone. Why this book? Because Aspergers presents differently among girls and women.
What Is It About Autism and Trains?! (developmental pediatrician Amanda Bennett, Autism Speaks, 9-12-14)
Autism Awareness Is Not Enough: Here’s How to Change the World (Steve Silberman PLoS blog, 4-2-12) One in 88 kids are somewhere on the autism spectrum. Research focuses on genetic and environmental risk factors — not on improving the quality of life for the millions of autistic adults who are already here, struggling to get by.
World Autism Awareness Day (April 2)
Asperger's Syndrome: A Guide for Parents and Professionals by Tony Attwood (foreword by Lorna Wing). See also Attwood'sThe Complete Guide to Asperger's Syndrome
Life, Animated: A Story of Sidekicks, Heroes, and Autism by Ron Suskind. The story of Owen Suskind, an autistic boy who couldn't speak for years, who memorized dozens of Disney movies, "turned them into a language to express love and loss, kinship, brotherhood.The family was forced to become animated characters, communicating with him in Disney dialogue and song; until they all emerge, together, revealing how, in darkness, we all literally need stories to survive." Will be made into a movie.
Autism Spectrum Disorders: A Parent’s Guide to Symptoms and Diagnosis on the Autism Spectrum. Autism is not a single disorder, but a spectrum of closely-related disorders with a shared core of symptoms. An informative page.
Weighted Blankets: The Ultimate Use Of Calming Input For A Restful Sleep (Sensory Processing Disorders)
Scratching the Horizon: A Surfing Life by Izzy Paskowitz with Daniel Paisner A book about surfing, the bohemian life, family, and being the father of a son with autism as well as founder of Surfers Healing.
Kerry Magro on Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) (Autism Speaks) Kerry (diagnosed with PDD-NOS at age 4) produces “Kerry’s Korner,” an ongoing video series on YouTube.
The iPad: a Near-Miracle for My Son With Autism (Shannon Des Roches Rosa, BlogHer, 6-15-10) Great tips on apps that help her son draw, write, etc.
Reaching My Autistic Son Through Disney (Ron Suskind, NY Times Magazine, 3-7-14). A must-read piece about regressive autism -- and don't skip the comments.
A Parent’s Guide to Autism Spectrum Disorder (National Institute of Mental Health)
The Truth About Autism: Scientists Reconsider What They Think They Know (David Wolman, Wired magazine, 2-25-08). "...Mottron and other scientists have 'found universal strengths where others usually look for universal deficits.' Neuro-cognitive science, [Amanda Baggs] says, is finally catching up to what she and many other adults with autism have been saying all along.'
(Steve Silberman, Wired, 10-6-10)
Are You On It? If so, you're in good company. From Asperger’s to “Asperger’s,” how the spectrum became quite so all-inclusive. (Benjamin Wallace, New York, 10-28-12).
Temple Grandin: The world needs all kinds of minds (a super Ted Talk, Feb. 2010). "To understand animals, autism, and art requires getting away from verbal language."
Autism blog (Psychology Today)
Brain Changes Suggest Autism Starts In The Womb (Jon Hamilton, Shots, NPR, 3-26-14). Listen or read transcript.
Autism Tissue Program (ATP)
The Autism Advantage (Gareth Cook, NY Times, 11-29-12) Looking beyond stereotypes, high and low.
Autism on the Farm: A Story of Triumph, Possibility and a Place Called Bittersweet by Linda H. Davis (Kindle edition). Adults with autism have found a place at Bittersweet, a small farming community. Overseen and taken care of by trained volunteers, residents find ways to find safe and meaningful experiences through farm work.
What I Learned from My Autistic Son: A Guest Post by Brenda Rothman (PLoS blog, 4-1-13)
What it's like to have a Brother with Autism (3-minute YouTube video, by Spencer Timme, about his brother Mitchel)
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)
The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida. Read online David Mitchell's introduction, A Peek Inside My Son's Head, by the author of Cloud Atlas on why he translated a book by a 13-year-old Japanese boy with autism. "Reading it felt as if, for the first time, our own son was talking to us about what was happening inside his head, through Naoki’s words," writes Mitchell.
David Mitchell: learning to live with my son's autism (David Mitchell, The Guardian, 6-28-2013) Novelist David Mitchell looks back on the heartbreak – and joy – of learning that his son had autism. Plus, an extract from the book by a young Japanese boy that helped him.
The Reckoning: The Father of the Sandy Hook Killer Searches for Answers (Andrew Solomon, New Yorker 3-17-14). A painfully honest piece; I keep wondering what I would have done.
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)
Remembering Dr. Lorna Wing (this piece by Penumbrage is an interesting piece of history about our very recently changing understandings of autism, and her contributions to a more sophisticated understanding.
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)
Mothers Grapple With Autism's Impact On Siblings (Tara Boyle, Metro Connection, WAMU, NPR, 5-10-13)
Pathfinders for Autism. Provides resources and information for Maryland families (a good role model for other states) and volunteers help train police and other officials on how to interact with people with an autism disorder.
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
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Back pain, chronic

The Back Book (forgot your fear--get moving again, and here's how). This is the booklet featured in this "randomized controlled trial of a novel educational booklet in primary care." Information and advice to patients with low back pain can have a positive effect.
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.
The Balance Center (videos) "80% of the population in the United States suffers from back pain, compared to only 5% in many other countries, such as Portugal and Greece. These healthy people move slightly differently than we do. The teaching at the Balance Center is based on 35 years of research among these healthy populations. When you stand, bend, sit, and walk as these people do, your pain will be significantly reduced or eliminated."
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")
Abigail Rasminsky's posts on back pain, especially Mini History of Aplomb, Part 1; or Why You’re Not Standing Correctly (3-25-12). See also I'm Off to See the Wizard (3-4-12, about Noëlle, the Spine Whisperer) and I'm in Paris (3-7-12).3-4-12) . See also these videos from the Balance Center.
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
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Blood disorders

Medline Plus groups blood disorders as
---Platelet disorders, excessive clotting, and bleeding problems, which affect how your blood clots
---Anemia (when your blood does not carry enough oxygen to the rest of your body)
---Cancers of the blood, such as leukemia and myeloma
---Eosinophilic disorders -- problems with one type of white blood cell.
This assortment of links is by no means complete!
Types of Blood Disorders (Web MD)
Platelet disorders (a complete list, and links, MedlinePlus, NIH)
Patient Groups (American Society of Hematology, or ASH). Links to patient groups for common blood disorders, including anemia, bleeding disorders such as hemophilia, blood clots, and blood cancers such as leukemia, lymphoma, and myeloma. Request the documentary Blood Detectives to screen for your organization.
Wish by Spirit: A Journey of Recovery & Healing From an Autoimmune Blood Disease by Joan W. Young. She shares what she has learned about living with immune thrombocytopenia (ITC, a low blood platelet disease), including becoming your own medical advocate. See also her blog and newsletter (at JoanYoungWrites.com)
What Are Thrombocythemia and Thrombocytosis? (National Heart, Lung, and Blood Institute, NHLBI, on two platelet disorders)
What Is von Willebrand Disease? (a clotting disorder

Deep vein thrombosis
Deep vein thrombosis (DVT) DVT is a blood clot that develops inside a larger vein, usually deep within the lower leg or thigh. Untreated, it may travel to the lungs. "Recently, it has been referred to as "Economy Class Syndrome." (Society of Interventional Radiology, or SIR)
Slideshow: A visual guide to deep vein thrombosis (WebMD)
OrthoInfo on DVT
Deep vein thrombosis: Don't ignore symptoms of silent killer (Steve Vernon, CBS News, 6-18-13). "My wife almost lost her leg a few weeks ago. Then she almost lost her life. The symptoms didn't seem life-threatening at the time, so we almost made a fatal mistake by delaying seeking medical treatment."
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Brain tumors and aneurysms (for those of us who "watch and wait," brain tumors are a chronic condition)

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)

Blindness and other vision problems and disorders

Guide dog leads vision-challenged professor to new insight (Lane DeGregory, Tampa Bay Times, 10-3-13). A vision-challenged professor loosens a sure grip on what she knows only to gain new insight, thanks to a perfect match with a guide dog. A moving and informative story. Grab a hankie.
What is AMD (AMDAwareness). Age-related macular degeneration (AMD) is a chronic condition that causes central vision loss. It's a leading cause of blindness in adults 60 and older.
Dry macular degeneration: Coping and support (Mayo Clinic)
Cataract surgery (NIH SeniorHealth videos
Touching the Rock: An Experience of Blindness by John Hull. From sight problems at 13, gradually becoming blind.
Crashing Through: The Extraordinary True Story of the Man Who Dared to See (Robert Kurzon's book about Mike May. Blinded at age three, May defied expectations by breaking world records in downhill speed skiing, joining the CIA, and becoming a successful inventor, entrepreneur, and family man. He never yearned for vision. Then in 1999 he was given a chance to see again. The results were fascinating and unexpected and this book is fascinating whether you have vision problems or not!
Sight Unseen by Georgina Kleege. 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.
Planet of the Blind by Stephen Kuusisto. 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. The sequel: Eavesdropping: A Memoir of Blindness and Listening (in this sequel to Planet of the Blind, in which the author learns to live by ear.
Rex: A Mother, Her Autistic Child, and the Music that Transformed Their Lives by Cathleen Lewis. The moving story of a mother and her child, a boy who is blind, autistic, and a musical savant.
Loving Rachel by Jane Bernstein. About life with a blind daughter.
National Association for the Advancement of Color-Blind People (NAACBP)
New Outlook on Colorblindness (Melinda Beck, WSJ, 9-6-12--includes online test for colorblindness) Phone Apps, Videogames Offer Color Help; Seeking a Cure Through Gene Therapy
"So What's It Like Being Colorblind?" (WSJ, 11-6-12)
Testing colorvision (ColorDx)

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.

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Chronic fatigue syndrome /​ myalgic encephalomyelitis (ME/​CFS)

Other names for it (or subtypes): myalgic encephalomyelitis (ME),
chronic fatigue immune dysfunction syndrome (CFIDS), and post-viral fatigue syndrome (PVFS).

"Unbroken" author opens up about her own personal struggle (Face the Nation interview with Laura Hillenbrand, about her experience with chronic fatigue syndrome. Her experience with suffering helped her understand Louis Zamperini, which helped him open up.)
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."
ME/​CFS Worldwide Patient Alliance
CDC info on CFS
Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome? (part 1) (Julie Rehmeyer, guest blog on The Last Word on Nothing). Here's Part 2. And here's Julie Rehmeyer’s Chronic Fatigue Syndrome Recovery Story: Chronic Vigilance (Cort Johnson, Health Rising blog, 5-2-14)
Health Rising (Looking for Answers to Chronic Fatigue Syndrome and Fibromyalgia)
• Johnson, Hillary. Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson. Writes Goodreads: "For more than a decade a devastating disease has been allowed to spread through our country - unchecked, insufficiently researched, and all but ignored, if not denied, by the medical establishment. In many circles this disease, still known as Yuppi Flu, is dismissed as a psychological aberration. For the nearly two million people who have endured its traumatic and very real debilitating physical effects, however, Chronic Fatigue Syndrome is no joke."
Medical, Scientific, Political and Journalistic Pitfalls in the Study of Confusing Illnesses (video of Julie Rehmeyer's talk at Santa Fe Institute on how poorly federal agencies, researchers, doctors, and the media handle confusing illnesses, without clear mechanisms or sharply-defined symptoms, which are often considered psychosomatic. She focuses on CFS but the same pattern operates with AIDS, multiple sclerosis, and chronic Lyme disease.) Listen to the whole thing!
Phoenix Rising, supporting people with chronic fatigue syndrome (ME/​CFS)
Women'sHealth.Gov fact sheet on autoimmune diseases (with fact sheets aboutchronic fatigue syndrome , fibromyalgia, Graves' disease, Hashimoto's disease, inflammatory bowel disease, lupus, myasthenia gravis, thyroid disease)
CFIDS Association of America (working to conquer chronic fatigue and immune dysfunction syndrome)
Learning to Live with CFS (Sue Jackson's blog). See also Chronic Fatigue Syndrome: An Invisible Illness (Suzan Jackson, Blisstree, 10-9-08) as well as Suzan'sother essays
Living With Chronic Fatigue Syndrome (Catherine Morgan)
Living with Chronic Fatigue Syndrome (Doris Fleck)
Sleepy Dust. for patients with ME/​CFS (Myalgic Encephalopathy, Chronic Fatigue Syndrome, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), or Post Viral Fatigue Syndrome (PVFS)
• 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.
• Jones, Sue. Parting the Fog: The Personal Side of Fibromyalgia/​Chronic Fatigue Syndrome
• Teitelbaum, Jacob. From Fatigued to Fantastic (a guide to treating chronic fatigue and fibromyalgia)
Low Dose Naltrexone
Using Antidepressants to Treat Chronic Fatigue Syndrome (CFIDS Association of America
Orthostatic Intolerance and Its Treatment (Chronic Fatigue Clinic, Johns Hopkins Children's Center, 2010)

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.
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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)

Crohn's disease

Crohn's & Colitis Foundation of America (CCFA) . See especially Resources.
What is Crohn's Disease? (CCFA)
Patient Voices: Crohn’s Disease How does Crohn’s disease affect the lives of the young? How do men and women cope with the embarrassing symptoms and sometimes invasive treatments? Listen to the stories of seven men and women living with Crohn's disease. (NY Times, 8-27-08)
Crohn's disease (MedlinePlus) Crohn's disease is a form of inflammatory bowel disease (IBD). It usually affects the intestines, but may occur anywhere from the mouth to the end of the rectum (anus). Ulcerative colitis is a related condition.
Crohn's Disease (Health magazine). One story posted there: Better Treatment Found for Crohn's Disease (Health, 4-14-10)
Strong at the Broken Places by Richard M. Cohen (stories about five "citizens of sickness," individuals with ALS, non-Hodgkin's lymphoma, Crohn's disease, muscular dystrophy, and bipolar disorder).
Learning Sickness: A Year with Crohn's Disease by Jim Lang
Patient stories about Crohn's (Jennifer's website). Several people say Serovera changed their life.
Crohn's diet
Crohn's discussion group
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.
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Dementia, non-Alzheimer's
This section and the section about Alzheimer's have moved to this page, because they got so big: ALZHEIMER'S DISEASE AND OTHER FORMS OF DEMENTIA

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There 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)
Ask Your Questions (Diabetes Action Research and Education Foundation)
Healthy recipes (Diabetes Action Research and Education Foundation)
Advice for Newbies (David Mendosa)
Diabetes: The Invisible Epidemic (Palm Beach Post, special multimedia report and series)
Why Is Insulin So Expensive in the U.S.? (Anders Kelto, Morning Edition, NPR, 3-19-15) Incremental improvements in the drug — and the disappearance of older versions, which aren't as profitable (but work better for many patients) -- have kept prices high. A more affordable version is needed.
What does your pancreas do? (Emma Bryce and Bill Keaggy, TED-Ed) Excellent illustrated explanation.
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 his). A journalist who writes about diabetes, Mendosa also has it.
The Edmonton Protocol (Jerome Groopman, New Yorker, 2-10-03) The search for a cure for diabetes takes a controversial turn--human islet-cell transplants.
The Glycemic Index , which ranks food according to how it affects blood sugar levels (David Mendosa explains and provides helpful links. Particularly helpful: the Revised International Table of Glycemic Index (GI) and Glycemic Load (GL) Values—2008 (courtesy of the author, Professor Jennie Brand-Miller of the University of Sydney)
The Glucagon Connection (Gretchen Becker, 12-21-11). "Insulin and glucagon are like the accelerator and brake on your car. And it's the ratio of the two, rather than the absolute amount, that is important. If you have almost no insulin, you might be able to have normal BG levels if you also had almost no glucagon."
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)
Blood Sugar 101: What They Don't Tell You About Diabetes
Taking a Walk After a Meal Aids Digestion (Anahad O’Connor, Well, NY Times 6-24-13). Walking speeds the rate at which food moves through your stomach, and "walking for 15 minutes shortly after each meal improved daily blood sugar levels to a greater extent than a single 45-minute walk in the morning."
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)
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Eating disorders

National Eating Disorders Association (NEDA) (forums and other forms of support
Eating Disorders News (blog of Psychology Today)
Unhealthy Weight Loss or Gain from Eating Disorders (Pritikin Wellness Resources)
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)
Anorexia (NY Times fact sheet)
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
My name is Ron, and I am a food addict (Ron Cothran, CNN, 3-28-14 ) He writes that after gastric bypass surgery, "I no longer could eat to feel better; I needed to find a healthier way to deal with life." One reader comments: "You know what's worst of all? The treatment for chronic overeating is to think about every food choice you make for the rest of your life."
A Small Loss (Mary W's blog about her struggle with weight loss-gain-loss).
Eating disorders 'prevalent among fitness professionals' (Rhiannon Beacham, BBC News, 12-31-12)
Gaining: The Truth About Life After Eating Disorders by Aimee Liu, whose memoir of life with anorexia, Solitaire, came out when she was 25.
YMCA patrons stage intervention for anorexic woman (Steve Hartman, CBS News, 5-2-14)
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.
Mirror, Mirror Off the Wall: How I Learned to Love My Body by Not Looking at It for a Year by Kjerstin Gruys
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.
Binge Eating in Men: Understanding a Widely Misunderstood Eating Disorder (Carolyn C. Ross, Psychology Today, 10-2-12)
Shattered Image: My Triumph Over Body Dysmorphic Disorder by Bryan Cuban
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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)


Epilepsy (WebMD) Epilepsy is a group of related disorders characterized by a tendency for recurrent seizures. There are different types of epilepsy and seizures. Epilepsy drugs are prescribed to control seizures, and rarely surgery is necessary if medications are ineffective. Several articles here but see especially Slideshow: A Visual Guide to Epilepsy
I Must Save My Child: The Axelrods, Lauren, and Epilepsy (Melissa Fay Greene, Parade, Feb. 2009) Susan Axelrod's search for help for her daughter Lauren's uncontrollable epilepsy)
Epilepsy Foundation
Shattering the epilepsy stigma ( Kyler Sanderson, Niagara Week, 3-26-14)
Memoir on Temporal Lobe Epilepsy (Zachary Ernst, Inklings)
Gupta: 'I am doubling down' on medical marijuana (Sanjay Gupta, CNN, 3-6-14) Apologizing for having previously spoken against marijuana use, Gupta writes about "emerging science that not only shows and proves what marijuana can do for the body but provides better insights into the mechanisms of marijuana in the brain, helping us better understand a plant whose benefits have been documented for thousands of years. This journey is also about a Draconian system where politics overrides science and patients are caught in the middle."
Weed (Sanjay Gupta's documentary on medical marijuana)
Marijuana stops child's severe seizures (Saundra Young, CNN, 8-7-13) Much good background information.
Treating Epilepsy Naturally : A Guide to Alternative and Adjunct Therapies by Patricia Murphy
EPILEPSY 101-The Ultimate Guide for patients and Families (The National Epilepsy Educational Alliance, ed. Ruben Kuzniecky)
Ketogenic Diets: Treatments for Epilepsy and Other Disorders by Eric H. Kossoff, John M. Freeman, Zahava Turner, James E. Rubinstein.
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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)
National Fibryomyalgia & Chronic Pain Association (NFMCPA)
Fibromyalgia Network
Fibromyalgia (MedlinePlus, National Library of Medicine)
Fibromyalgia In-Depth Report (NY Times fact sheet)
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' site)
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
Fibromyalgia – living with a controversial chronic disease (Marijke Vroomen Durning, RN with fibromyalgia, for Scope, Stanford Medicine, 8-13-13) "This is why many people with fibromyalgia don’t speak out. There is no such anger against people who say they have diabetes or cancer or Crohn’s disease – but it’s acceptable to brush off, deny, or criticize a claim that you have fibromyalgia."
You Don't Have to Look Sick to Be Sick: Understanding Fibromyalgia (PDF, Marijke Vroomen Durning, Fibromyalgia Life & Chronic Pain, Nov/​Dec 2012)
Drug Approved. Is Disease Real? (Alex Berenson, NY Times 1-14-08, on the doubts that make this condition more difficult to live with)
New research sheds light on mysterious fibromyalgia pain (Karen Weintraub, USA Today, 12-15-13) Commonly used medications have side effects and don't help everyone. "In recent years, scans of patients with fibromyalgia have revealed brain changes associated with pain, but the new research suggests these are a symptom rather than the cause of the condition."
This Earth That Holds Me Fast Will Find Me Breath: The Morgan Freeman Story (Tom Chiarella, Esquire, 7-10-12) "It's the fibromyalgia," he says when asked. "Up and down the arm. That's where it gets so bad. Excruciating."
10 Food Rules for Pain Patients (Mara Betsch, "The Febro-Food Connection," Health). See thumbnails of all 10 rules.
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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)
CDC: One-Fourth Of Heart Attack And Stroke Deaths Preventable (Scott Hensley, Shots, Health News from NPR, 9-3-13)
More Evidence That Even 'Moderate' Exercise Helps Women's Hearts (HealthDay, 2-15-15) A few sweat-inducing workouts per week are enough to cut risks in middle age, study finds
My Telltale Heart (Robert G. Kaiser, Washington Post, 2-29-04) "It's a horror story, all right. One moment, your life is normal -- endless. The next, a surgeon saws open your chest, freezes your brain and scrambles to keep you alive, literally holding your heart " See also Narrating and imaging an aortic dissection (Edward Tufte)
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)
Heart Surgery, Unplugged (Jerome Groopman, New Yorker, 1-11-99). Making the coronary bypass safer, cheaper, and easier
Controversy Over Statins for Older Patients (in their 70s and 80s--Judith Graham, NY Ties, 10-22-13) There is "scarce scientific evidence supporting the use of statins by 70- or 80-year-olds without pre-existing cardiovascular disease," according to a study by AMDA, a professional group representing physicians working in nursing homes. Some doctors disagree, but "There is evidence of harm linked to statin use in seniors... including muscle aches, liver toxicity and gastrointestinal distress; growing evidence of impaired memory and a heightened risk of diabetes; and some evidence of an increased risk of cancer."
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.
Hospital Chain Inquiry Cited Unnecessary Cardiac Work (Reed Abelson and Julie Creswell, NY Times Business, 8-6-12) Award-winning articles on how unnecessary — even dangerous — procedures were taking place at some HCA hospitals, driving up costs and increasing profits. HCA is the largest for-profit hospital chain in the United States. Implications of the piece: Borrowing money to pay dividends to investors, HCA turned partly to (sometimes unnecessary) cardiac care to fund its business needs.
How to Draw a Human Heart (Emon Hassan's short video about Laura Ferguson's art and anatomy class at NYU for medical students, faculty, and staff)
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 . 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.
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Huntington's disease
Huntington's Disease Society of America (HDSA)
Huntington's Disease (National Institute of Neurological Disorders and Stroke)
• Alice Wexler's book is a must-read: Mapping Fate: A Memoir of Family, Risk, and Genetic Research (on Huntington's Disease)
Dr. Gilmer and Mr. Hyde (This American Life ep. 492, 4-12-13). Dr. Benjamin Gilmer (left) gets a job at a rural clinic. He finds out he’s replaced someone — also named Dr. Gilmer (picture) — who went to prison after killing his own father. But the more Benjamin’s patients talk about the other Dr. Gilmer, the more confused he becomes. Everyone loved the old Dr. Gilmer. So Benjamin starts digging around, trying to understand how a good man can seemingly turn bad. Turns out he has Huntington's, which explains a few things. Read the transcript.

Invisible chronic illness, including ADHD, autoimmune diseases, chronic fatigue syndrome (CFS), diabetes, fibromyalgia, rheumatic arthritis.
The ICI Experience, a blog about all aspects of the experience of living with Invisible Chronic Illness (ICI).
Books about how to cope with chronic or invisible illnesses
Invisible Illness Awareness Week (September, virtual conference, online)
On-Demand episodes from Invisible Illness conference (Blogtalk radio)
• Donague, Paul H., and Mary Elizabeth Siegel. Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness
Invisible Disabilities Association spreads awareness about illness, pain, injury and disabilities
Overcoming Self Defeating Behaviors When You are Chronically Ill (Invisible Illnesses conference, 2008)
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Kidney disease, kidney failure, dialysis, and kidney transplants

Silent killer on the rise: Kidney disease is now more common than diabetes. (Consumer Reports 3-08), and How to Read Your Urine (Consumer Reports)
Learning to Say No to Dialysis (Paula Span, New Old Age, NY Times, 3-27-15) Some older adults with advanced kidney failure are resisting the usual answer by deciding the sacrifices required by the treatment aren't worth the extra months of life. “Nobody tells them, ‘You could have up to two years without the treatment, without the discomfort, with greater independence.’”
National Kidney Foundation (learn about causes and symptoms of chronic kidney disease, or CKD, and glomerular filtration rate (GFR)
Part 1: 'Survival of the savviest" (Josephine Marcotty, StarTribune, 9-30-09, updated--an excellent series on organ donation). 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...
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L'Arche ("relationship, transformation")--L’Arche faith-based communities are family-like homes where people with and without disabilities share their lives together.

Late-stage Lyme disease
getting diagnosed and treated

Also called chronic Lyme disease, late-stage neuroborreliosis, and "post-treatment Lyme Disease Syndrome" (PTLDS), this is a disease for which patients have trouble getting a timely diagnosis and adequate treatment. There is much dissension in the medical community about the nature of the disease (which many if not most infectious disease specialists say does not exist) and there is much controversy about available (or unavailable) treatments. Learn what they mean when they say you need to see a "lime-literate doctor." Here are some places to start learning about a complex medical/​health problem:
SLyme Disease: How a speck changed my life forever . Start your research by reading Amy Tan's piece on her experience with late-stage neuroborreliosis, which also appears in her book The Opposite of Fate. "As a patient with persistent Lyme disease, I have joined a club of people with a stigmatized illness, one many doctors do not want to treat. I am lucky to have a doctor who is willing to provide open-ended treatment. I am lucky I have insurance. Most Lyme patients are denied insurance. They are viewed as whacky. They have gone without appropriate care for so long they have lost their health, their jobs, their homes, their marriages, and even their lives."
Pseudo-science in the House? Scientists challenge a bill on Lyme disease (Brent Bambury, Day 6, 12-4-14) Factions are divided over the way Lyme disease is diagnosed and treated, and whether chronic Lyme disease even exists at all. The controversy itself (and hyperbole by one doctor) may be slowing down development of better treatments for the increasing number of suffering patients.
Lyme Disease crash course--Everything you need to know in 5 mins. (Lyme Disease Awareness, 7-13-08) The map needs updating--for instance, Virginia is now a state with a lot of Lyme disease.
A big dispute behind a tiny tick bite: What to call the lingering effects of Lyme disease? (Janice Lynch Schuster, Washington Post, 9-15-14) "For most people with Lyme, a 30-day course of antibiotics is enough to cure the infection. But according to Gerry Wormser, an infectious-disease expert who helped develop the Lyme guidelines of the Infectious Disease Society of America, not everyone responds to this treatment. And for these people, a lifetime of health problems can ensue." A balanced look at a controversy about a disease and its treatment, enough to make you worry about ivory-tower Lyme deniers on one side and Lyme-treating charlatans on the other.
Diagnosing and Treating Lyme Disease. (Diane Rehm radio show, NPR-WAMU-FM, 2-29-12--listen online). Patients who believe they suffer long-term problems from Lyme disease are claiming victory over a national doctors group. The Infectious Diseases Society of America has agreed to review its guidelines, which have said there's no evidence long-term antibiotics can cure "chronic Lyme" disease, or even that such a condition exists. Read the comments!
Lyme disease controversy (this Wikipedia account of the controversy suggests that most medical authorities advise against "long-term antibiotic treatment for chronic Lyme disease, given the lack of supporting evidence and the potential toxicities."
Chronic Lyme disease: in defense of the scientific enterprise (Phillip J. Baker, American Lyme Disease Foundation, in The FASEB Journal, Life Science Forum, 2010). "Because there is no clinical evidence that this condition is due to a persistent infection, advocating extended antibiotic therapy is not justified and has been shown to be harmful and of no benefit."
Ten Facts You Should Know About Lyme Disease (IDSA)
Controversy over Chronic Lyme Disease.(Listen to Diane Rehm radio show, WAMU, 4-26-09, with Dr. Samuel Shor, Pamela Weintraub, and Philip Baker, ALDF. Chronic Lyme Disease is one of the most controversial issues in medicine today. Diane and her guests discuss the battle over diagnosis, treatment, and whether Chronic Lyme Disease even exists.)
No Small Thing: The Shifting Lyme Landscape (video, Mary Beth Pfeiffer, Poughkeepsie Journal 9-22-13) Believers in chronic disease bolstered by research, laws; but CDC policies hold fast. The debate over the existence of chronic Lyme disease — among the most heated in modern medicine — has gained momentum toward the doctors who treat it, patients who have symptoms of it and researchers who study it, a review of Lyme developments suggests. See other stories in award-winning Poughkeepsie Journal series here.
Study examines new Lyme test; researchers seeking Dutchess doctors to participate (Deadline Club award winner by John Ferro, Poughkeepsie Journal, 4-3-14) U.S. researchers examine method that may lead to early detection, treatment
Antibiotics don't always kill Lyme, studies say (John Ferro, Poughkeepsie Journal, 3-27-14) Researcher says Lyme disease bacteria persist even after antibiotic treatments in mice.
FIGHTING LYME DISEASE: Ticks don't harm mice, study finds, meaning Lyme threat is not decreased (John Ferro, Poughkeepsie Journal, 3-25-14) When paired with other research that has shown mice don’t fight off diseases effectively and don’t remove ticks from their bodies, the study underscores the threat the small mammals play as wellsprings for Lyme disease, malaria-like maladies such as babesiosis and anaplasmosis, and the incurable and often deadly Powassan encephalitis.
The Lyme disease chronicles, continued Chronic Lyme disease: in defense of the patient enterprise (Raphael B. Stricker, The Journal of the Federation of American Societies for Experimental Biology, December 2010)
CDC fact sheets and other resources on Lyme disease.
Lyme Disease Transmission (Centers for Disease Control and Transmission, CDC). See lifecycle chart; risk greatest in late spring and summer.
Lyme Disease Network
Maryland Lyme, many factsheets, including this one which spells out how Johns Hopkins and the Infectious Diseases Society of America (and most health insurance companies) believe many of the "chronic" cases don't exist--and argue against extended use of antibiotics.
Lyme disease tutorial (MedlinePlus)
TickEncounter Resource Center promoting the most up-to-date, effective, tick-bite prevention techniques.
The Lyme Wars (Michael Specter, The New Yorker, 7-1-13). The Lyme-disease infection rate is growing. So is the battle over how to treat it.
Lyme Disease’s Staggering New Numbers (Michael Specter, New Yorker, 8-19-13) Lyme disease is officially a tremendous public-health problem in the United States.
A New Weapon in the War on Ticks (Jason Fagone, New Yorker, 8-27-13). A miniaturized child's version of a type of rugged off-road vehicle called a rock crawler, the tick robot creates a facsimile of something the ticks will go after (and be exposed to something that kills them). Not on the market yet, but promising.
37-Year-Old Wife and Mom Battles Neck-Down Paralysis With Rehabilitation (a four-hankie video from Kindred Healthcare)
Tick-Borne Illness Babesiosis a Hazard for Seniors (FDA, Health Day). Risk highest in certain East Coast states
Parasites - Babesiosis (CDC)
International Lyme And Associated Diseases Society (ILADS), the one to turn to if you have a chronic or persistent problem with tick-borne diseases.
The Lyme Disease Foundation
American Lyme Disease Association (ALDF) (private organization-based site that educates about Lyme disease)
Lyme Disease (information page of Centers for Disease Control and Prevention, CDC). Here's CDC on Post-Treatment Lyme Disease Syndrome
Clinical trials for Lyme disease (ClinicalTrials.gov, a service of NIH)
Under Our Skin (video trailer for excellent documentary about doctors who refuse to treat or even acknowledge chronic Lyme disease--available on Netflix, Amazon streaming, etc.)
Lyme Disease: The Great Imitator (Pamela Weintraub, Psychology Today, on a form of disease that can masquerade as psychiatric problems)
When the Doctor Gets Sick, the Journey Is Double-Edged (Pamela Weintraub, Psychology Today, part 1 of three-part story about many patients' struggle to get a diagnosis, with neurological Lyme disease). Click here for part ii, for part iii , and Shadowland of the Mind (Neurological Lyme Disease, Part One), an excerpt from Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub
Chronic Lyme disease: A dubious diagnosis (Patricia Callahan and Trine Tsouderos, Chicago Tribune 12-8-10). A report from the other side.
Tickborne Diseases of the United States (CDC)
Lyme Disease Evaluation (this explanation of ARUP Lab's test for the disease may be helpful)
The Integrative Treatment of Lyme Disease (by Steven J. Bock, MD, reprinted from the International Journal of Integrative Medicine, May/​June 1999). Dr. Bock is well-known for treating people whose disease other doctors don't recognize.
How to Hold On: When Illness Intrudes on Romance (Channon Hodge, NY Times video, 2-27-15) A debilitating bout of Lyme disease threatened to derail Elisabeth C. Hall’s budding relationship with Matthew Danzig. But Mr. Danzig was undeterred because he had already fallen in love.
An Often-Overlooked Health Epidemic: My Opinion Piece on AOL News (Connie Bennett, opinion piece on AOL.com)

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Cost of not caring: Nowhere to go (Liz Szabo, in excellent series in USA TODAY, 7-21-14 ). PART 1. Mental health system drowns from neglect. The financial and human toll for neglecting the mentally ill. First story: A man-made disaster: A mental health system drowning from neglect. “We have replaced the hospital bed with the jail cell, the homeless shelter and the coffin” (Rep. Tim Murphy, R-Pa.) States have been reducing hospital beds for decades, because of insurance pressures as well as a desire to provide more care outside institutions. Tight budgets during the recession forced some of the most devastating cuts in recent memory, says Robert Glover, executive director of the National Association of State Mental Health Program
Cost of not caring: Stigma set in stone (Liz Szabo, USA TODAY) PART 2. People with mental illness suffer in sick health system. Chapter 1: A separate and unequal system. People with mental illness face legal discrimination. “'There is no other area of medicine where the government is the source of the stigma.' ” Rep. Tim Murphy, Rep. PA. Chapter 2: Lost in darkness. Many wait nearly a decade for treatment. "“'If someone had listened to me the way that psychiatrist listened to me in jail. I think maybe my illness wouldn't have gotten that far.'” Chapter 3: Working for change. Advocates chip away at discriminatory policies. “'Every parent I know has to fight for treatment for their child.'” Chapter 4: Overcoming the shame: Speaking up heals old wounds. “'Where we are at is where the cancer community and HIV community were 25 years ago.'” NFL player Brandon Marshall
Mental illness cases swamp criminal justice system (Kevin Johnson, USA Today) PART 3. Mental illness cases swamp criminal justice system. On America's streets, police encounters with people with mental illnesses increasingly direct resources away from traditional public safety roles. Chapter 1: Hordes of inmates are ill. Fractured system plagued by problems. “They end up here (the criminal justice system), because we are the only system that can't say no.” ~Cook County sheriff Tom Dart. Chapter 2: Taken away in cuffs. Exhausted cops transport those needing help all over the state. Chapter 3: A gunshot, and a teen dies. Not all officers are trained to deal with mental patients. Chapter 4: Lessons from a fatal shooting. A call goes out for special officer training. Chapter 5: A call for help, then Navy Yard. Aaron Alexis and the 'vibrations' in his body

The Fortunate Mother: Caring for a son with schizophrenia (Rick Hampson, USA TODAY) The lucky one: Despite hardships, a mother knows it could be worse. For the mentally ill, relatives are the last to leave.
Solutions to woes of mentally ill exist but aren't used (Liz Szabo, USA TODAY) Millions could be helped if programs were put into place.
Substance abuse treatment often impossible to find (Larry Copeland, USA Today) Promising strategies gather dust: 'It's hard to get anyone to pay attention until it happens again.' Joan Ayala now works as a mental health clinician trying to help others avoid her decades-long ordeal.
Early intervention could change nature of schizophrenia (Liz Szabo, USA Today) Programs aim to prevent psychosis or halt a patient's decline.
40,000 suicides annually, yet America simply shrugs (Gregg Zoroya, USA Today) There's a suicide in the USA every 13 minutes.
Mental disorders keep thousands of homeless on streets (Rick Jervis, USA Today) Thousands with mental illness end up homeless, but there are approaches that can help out. Dorothy Edwards hugs her 8-year-old dog, a shepherd-pit bull mix that helped protect her when she lived on the streets.

The Battle to Belong: Depression and an Immigrant’s Struggle to Assimilate ((Roger Cohen's powerful story about his mother's manic depression and suicide attempts and how they affected the family (NY Times, 1-9-15). Adapted from his memoir, The Girl from Human Street: Ghosts of Memory in a Jewish Family A remarkable chronicle of the quest for belonging across generations. An intimate and profoundly moving Jewish family history—a story of displacement, prejudice, hope, despair, and love.
Does gender play a role in treatment? (Phyllis Hanlon, New England Psychologist, 3-1-15) Excellent discussion, of treating depression generally as well as with a focus on gender.
A D.C. Teen's Tale of Self-Cutting and Recovery (Kavitha Cardoza, Metro Connection, NPR, 1-23-15) "Research suggests that cutting is more common among teen girls than boys, and it’s quite prevalent — it affects between 12 and 25 percent of adolescents."
Self-injury/​cutting (Mayo Clinic)
Self-injury, also called self-harm, is the act of deliberately harming your own body, such as cutting or burning yourself. It's typically not meant as a suicide attempt. Rather, self-injury is an unhealthy way to cope with emotional pain, intense anger and frustration."
All About Depression
Acquainted with the Night: A Parent's Quest to Understand Depression and Bipolar Disorder in His Children by Paul Raeburn
The New Science of Mind (Eric R. Kandel, Sunday Opinion, NY Times, 9-6-13) An increasing understanding of the workings of the brain means that psychiatric disorders are increasingly seen as being based in biology. We're learning which disorders are responsive to cognitive behavioral therapy.
Mind Over Misery (Robert L. Strauss, Stanford magazine, Sept/​Oct 2013) Psychiatrist David Burns wants people to reason their way through anxiety and depression into happiness. A persuasive account of the effectiveness of cognitive behavioral therapy (CBT) for depression.
The gift of depression and mood disorder (Sarah Boon, DoubleXScience, 7-26-13). What do you do when your illness feeds your success?
The Psychiatric Drug Crisis (Gary Greenberg, New Yorker, 9-3-13) What happened to psychiatry's magic bullets? "Having been discovered by accident, they lacked one important element: a theory that accounted for why they worked (or, in many cases, did not). That didn’t stop drug makers and doctors from claiming that they knew....Bedazzled by the prospect of unraveling the mysteries of psychic suffering, researchers have spent recent decades on a fool’s errand—chasing down chemical imbalances that don’t exist."
The Americanization of Mental Illness (Ethan Watters, NY Times Magazine, 1-8-2010)
American Psychiatric Association (APA) links to mental health resources
Antipsychotic Drugs: Side Effects May Include Lawsuits (Duff Wilson, NY Times, 10-2-10). writes that second-generation ("atypical") antipsychotic drugs, which pharmaceutical companies have marketed heavily as being safer, are the subject of lawsuits, unveiling documents revealing questionable marketing tactics about drugs for which side effects are still being reviewed.
Bipolar Disorder: Diagnosing Mood Disorders in a New Generation (Irene Wielawki, NY Times, Expert Q&A 1-25-08). Wielawki interviews NIMH research psychiatrist Ellen Leibenluft about correctly diagnosing children and teenagers)
Not Knowing (Nobody, DoubleXScience,5-24-13). There will be a next time, another severe and major depression. Plus a few other problems.
When My Crazy Father Actually Lost His Mind (Jeneen Interland, NY Times Magazine, 2-21-12) This story about an episode in her father’s debilitating bipolar disorder uses her personal story to highlight deficiencies in a dangerously overburdened, underfunded mental health and criminal justice system.
Can You Call a 9-Year-Old a Psychopath? (Jennifer Kahn, NY Times Magazine, 5-11-12)
Creative minds: the links between mental illness and creativity (Roger Dobson, The Independent, 5-5-09, reprinted in Beating the Beast: An Online Depression Support Community)
Depression (Psychology Today blog)
Depression resources (Psych Central, including material on Seasonal Affective Disorder (SAD))
Learning How to Cope With Seasonal Affective Disorder (David Rosenberg, Behold, the photo blog, Slate, 1-14-15)
Hallmarks of BPD (borderline personality disorder). See Randi Kreger's blog, Lines from the Border and info about her helpful books and online support communities.. See also Why BPD relationships are so complicated.
• Randi Kreger's books:
---The Essential Family Guide to Borderline Personality Disorder: New Tools and Techniques to Stop Walking on Eggshells
---Stop Walking on Eggshells: Taking Your Life Back When Someone You Care About Has Borderline Personality Disorder (with Paul T. Mason)
---The Stop Walking on Eggshells Workbook: Practical Strategies for Living with Someone Who Has Borderline Personality Disorder
Hallmark of narcissistic disorder (also on BPD Central)
Hyperbole and a Half (Allie Brosh's wonderful blog, with drawings and great text). My daughter recommended this and I agree with her that most anyone who has suffered depression will be able to identify with the stories and thoughts expressed partly through drawings/​cartoons, with humor. Check out this blog entry in particular, and listen to Brosh on this NPR interview, "Clean ALL the things.". I'm buying a copy of her book: Hyperbole and a Half: Unfortunate Situations, Flawed Coping Mechanisms, Mayhem, and Other Things That Happened... /a>
Depression. Can Psychiatry Be a Head Case? (Louis Menand, New Yorker story on how little science agrees about the nature of depression and the effectiveness of psychiatric medication, 3-1-10)
Decades after 2 suicide attempts, I'm thankful to have the life I nearly cut short (Jacquielynn Floyd Dallas News.com, 2-2-13). "For me, depression took on a camouflaged veneer of normal that made it difficult to “read the signals.”
Depression, Research on (John M. Grohol, NIMH)
Depression and Bipolar Support Alliance (DBSA)
Educational products from MIRECC (Veterans Administration Mental Illness Research, Education, and Clinical Centers)
Discovering Apps with a child with special needs (Cas Pearson, mother of a child with Down's syndrome, guest post on Nosy Crow, 8-3-12)
Entry on mental illness is added to AP Stylebook (AP, 3-7-13)
Faces and Voices of Recovery (people dealing with alcohol and drug problems)
Family to Family Education Program. The NAMI Family-to-Family Education Program is a free, 12-week course for family caregivers of individuals with severe mental illness. (National Alliance on Mental Illness)
Getting a Grip (Raymond Abbott, a licensed social worker, sees the humor in dealing with a difficult mental health client, in Pulse, 4-4-14)
Grading the States: A Report on America's Health Care System for Adults with Serious Mental Illness (National Alliance on Mental Illness, 2009)
Grading the States (NAMI report in brief, PR Newswire)
•••HealthCentral has sites (and blogs) in these categories, among others: ADHD, Alzheimer's, Anxiety, Asthma, Bipolar, Chronic Pain, Depression, Learning Disabilities, Schizophrenia, Sleep. HealthCentral's videos (a large, searchable, well-organized collection of videos from various sources) look very helpful, especially for those new to a condition.
Intervoice: The international community for hearing voices
Kay R. Jamison, "An Unquiet Mind: Personal Reflections on Manic-Depressive Illness" (transcript of talk at the University of Virginia, by the author of An Unquiet Mind: A Memoir of Moods and Madness and Touched with Fire: Manic-Depressive Illness and the Artistic Temperament)
Law creates barrier to getting care for the mentally ill (Meg Kissinger, Milwaukee Journal-Sentinel 12=10=11). Forty years ago, a new legal standard for mental health commitment emerged from a Milwaukee lawsuit to become the law of the land. It has proved to be tragically inadequate. The problem with leaving it up to a person to decide if he or she wants psychiatric care is that not everyone with mental illness knows they have it.
When your thoughts become fears and your fears become obsessions (Carlos Lozada, Washington Post, 1-25-15). "Linger for a moment on those irrational thoughts that sometimes hop the mind’s rope line. What would happen if I drove against traffic in the thick of rush hour? What if my completely healthy loved one died tomorrow?...Imagine now that the thoughts are not quickly cast out, but instead claim more and more space until they overwhelm everything else, all but the awareness that you can’t stop them. Trying to banish them only ensures their persistence. Some people develop distractions — compulsive, repetitive behaviors — to fight back. But the compulsions aggravate the obsessions. Being caught in this destructive loop is what it means to live with obsessive-compulsive disorder." A review of the book The Man Who Couldn't Stop: OCD and the True Story of a Life Lost in Thought and the story in brief of its author, David Adam. "The memoirist knew he didn't have AIDS, but he couldn't stop thinking about it."
Being Me with OCD: How I Learned to Obsess Less and Live My Life by Alison Dotson (part memoir, part self-help for teens--and a guide for friends and family members)
"It'll be Okay.": How I Kept Obsessive-Compulsive Disorder (OCD) from Ruining My Life by Shannon Shy
My Age of Anxiety: Fear, Hope, Dread, and the Search for Peace of Mind by Scott Stossel
Triggered: A Memoir of Obsessive-Compulsive Disorder by Fletcher Wortmann. (Listen to interview on Talk of the Nation (NPR, 3-29-12)
An Obsessive Compulsive's 'Life In Rewind' (Talk of the Nation story about Ed Zine, whom it took 16,384 precise movements to get from his bed to the bathroom). Read the compelling book: Life in Rewind: The Story of a Young Courageous Man Who Persevered Over OCD and the Harvard Doctor Who Broke All the Rules to Help Him by Terry Weible Murphy, Michael A. Jenike, M.D., and Edward Zine.

The Linden Method (for dealing with anxiety, panic attacks, OCD, and phobias)
Many Voices (for people recovering from trauma and dissociation)
McMan's Depression and Bipolar Web
Mental Health: A Report of the Surgeon General (download, read online, or order this informative report)
Mental Health & Psychology Resources Online (Psych Central's links)
Mental Illness in Academe. Elyn R. Saks on the day an incident of paranoid schizophrenia came on while she was teaching a class--and when and whether to "come out" about your mental illness (Chronicle of Higher Education, 11-25-09). Read her memoir, The Center Cannot Hold: My Journey Through Madness
Mindset:Reporting on Mental Health (Canadian Journalism Forum on Violence and Trauma--part of a project created by Canadian journalists for journalists). Topics covered: When is stigma an issue for journalists? Towards best practice, Treatment and recovery, Legal issues and mental illness, Addiction and mental illness, Covering suicide, Journalist self-care. Geared to journalists but with links many nonjournalists may find helpful.
A mother helps son in his struggle with schizophrenia ( Stephanie McCrummen, Washington Post, 5-25-13)
Shulamith Firestone. Death of a Revolutionary (Susan Faludi, The New Yorker, 4-15-13). Feminist Shulamith Firestone helped to create a new society. But she couldn’t live in it. "In 2005, when Jean-Paul Selten and Elizabeth Cantor-Graae, experts on the epidemiology of schizophrenia, reviewed various risk factors—foremost among them migration, racism, and urban upbringing—they found that the factors all involved chronic isolation and loneliness, a condition that they called 'social defeat.' They theorized that 'social support protects against the development of schizophrenia.'" Society, and her feminist sisters, failed to provide that support for this pioneering feminist. A sad and important story.
Narrowing an Eating Disorder (Eating Disorder Not Otherwise Specified, or Ednos, by Abby Ellin (NYTimes, 1-18-10)
National Alliance on Mental Illness (NAMI, an important group for families of people who are mentally ill, provides advocacy, programs, and support for people whose lives are affected by serious mental illness)
National Resource Center on Psychiatric Advance Directives (to plan for the possibility that one might lose capacity to give or withhold informed consent to treatment during acute episodes of psychiatric illness)

The OCD Diaries (Bill Brenner's blog, this entry: The Love Story Continues--Happy Birthday, Erin!)
Interview with Dr. Jeffrey Schwartz, expert on OCD, on how much choice and control we actually have (by refocusing our attention) over things like mood, addictions, and overeating (on YouTube). Schwartz is the author of You Are Not Your Brain: The 4-Step Solution for Changing Bad Habits, Ending Unhealthy Thinking, and Taking Control of Your Life. He says that 2% of the population has OCD, but most people hide it. His earlier book is Brain Lock: Free Yourself from Obsessive-Compulsive Behavior. Leonardo DiCaprio does an excellent job portraying Howard Hughes' OCD in the film The Aviator; it also took him three months to stop OCD behaviors, after finishing the movie.
The Different Types of Obsessive-Compulsive Disorder (OCD-UK) Explains (and breaks down further) the four main types of OCD (1. checking, 2. contamination/​mental contamination, 3. hoarding, and 4. ruminations/​intrusive thoughts) and some of the fears associated with them.
Compulsive hoarding (OC Foundation)
--Hoarding: How Much Stuff is Too Much? (Mary Mihaly, Healthy Outlook blog, 1-4-12)
--Shop 'Til You Stop: How to Treat Compulsive Spending Melinda Beck, Health Journal, WSJ, 12-6-11)
Buried by His Past (Corey Kilgannon, NY Times, 3-7-14) "A Son of Privilege, Consumed by Hoarding, Faces a Deadline to Pack Up and Move Out" The younger son of Tex McCrary and Jinx Falkenburg, he appeared on an episode of the A&E TV show “Hoarders.” "A large team of workers removed eight truckloads from the apartment, creating trench-like walkways, but they really only put a dent in the collection. Mr. McCrary’s insistence upon managing the removal of items wound up slowing, and ultimately halting, the operation."

Patient Voices, a New York Times series of first-person accounts (in audio) of living with various chronic diseases, including bipolar disorder, O.C.D., and schizophrenia. Check out the whole list
The Problem With How We Treat Bipolar Disorder (Linda Logan, New York Times Magazine, 4-26-13 and four days later there were already 418 comments). The doctors could address my symptoms. But they didn't much care about my vanishing sense of self.
‘• Psychiatric Advance Directives (state-by-state info), National Resource Center on Psychiatric Advance Directives
Psych Central (Dr. John Grohol's site, accessible mental health resources)
Post-traumatic stress disorder (PTSD) (there is a whole section on this syndrome and disorder)
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
Stop Stigma (SAMSHA) SAMHSA's Resource Center to Promote Acceptance, Dignity and Social Inclusion Associated with Mental Health (ADS Center)\
Support Groups: The changes and challenges they will bring to your life (listen to Christina J. Werdebaugh, on BlogTalkRadio)
Understanding clinical depression (podcast with Hinda Dubin, psychiatrist with the University of Maryland School of Medicine)
Understanding the Anxious Mind (Robin Marantz Henig, NY Times Magazine, 9-29-09)
Understanding schizophrenia (Medically Speaking podcast with Anthony Lehman, chair of the department of psychiatry at the University of Maryland School of Medicine), 13 minutes
Visualizing Schizophrenia (Irene Wielawski, NYTimes, interviews Paul Thompson on visualizing progressive brain damage in people with schizophrenia)
When My Crazy Father Actually Lost His Mind by Jeneen Interlandi (NY Times Magazine, 6-22-12). Jail and a restraining order are the family's backup system when involuntary commitment is discouraged, psychiatric facilities are overbooked, judges have received inadequate information, and social and medical systems have been gutted to cut costs. Still, the author's father, in full manic psychosis, is a danger to himself and the family who loves but temporarily fears him. Like many who suffer from bipolar disorder, he refuses medication, insists he is normal, and demands his rights: to be free. The Sunday of its publication this piece has 153 comments.
When Young Minds Cry Out Sandra Dark on the importance of checking out possible mental problems as early in a child's life as possible)

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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)
27 Foods That Can Trigger Migraines (Health Central, an annoying format, but helpful)
Keeping a Migraine Diary (Health Central)

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

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Movement Disorders

International Parkinson and Movement Disorder Society, 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 is a physiatrist? (National Spinal Cord Association)
Movement Disorder Emergencies in the Elderly (Babak Tousi, MD,
Cleveland Journal of Medicine)
Parkinson' Disease (many helpful links, in section on Coping with Rare, Invisible, and Chronic Diseases
ZocDoc (search for names of local specialists)
NeuroTalk Support Groups and Community (for brain, neurological, and mental health conditions, including Parkinson's, MS, Reflex Sympathetic Dystrophy, traumatic brain injury, trigeminal neuralgia, ALS, and others)
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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.

Paraplegia, quadriplegia, and spinal cord injuries and disease
The National Spinal Cord Injury Association (NSCIA)
WE MOVE, Worldwide Education and Awareness for Movement Disorders
MedStar National Rehabilitation Network
What is a physiatrist? (National Spinal Cord Association). Physiatrists are doctors certified as specialists in rehabilitation medicine by the American Board of Physical Medicine and Rehabilitation. They are trained in the diagnosis and treatment of physical disability.
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
Quadriplegic Dad Shares Joys, Challenges Of Raising Triplets (Rebecca Sheir, Metro Connection, WAMU, NPR, 6-14-13)

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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) See also Managing Your PD and Complementary Therapies (speech therapy, physical therapy, and occupational therapy)
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
Like a Wheel, but Turning Slower (Sam Tanenhaus, NY Times, 8-28-13) Linda Ronstadt Discusses Her Memoir and Parkinson’s, with an emphasis mostly on her musical career.
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.
Aging and Parkinson's and Me (John Schappi's blog). He writes: "I was diagnosed with Parkinson’s in September 2009 at age 80. Prior to the diagnosis, while depressed and anxious, I made plans to sell my car and house and move into a senior living residence. I also bought the book "Final Exit." Now I still have my car and house and I can't remember where I put the "Final Exit" book." Three more samples:
---#1 of My Big Three: Exercise
---#2 of My Big Three: Meditation
---#3 of My Big Three: Sleep "Prescriptions"

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) "Iatrogenic" refers to illness caused by medical testing or treatment. In theory, some movement disorder emergencies in the elderly—such as rigidity, dystonia, hyperkinetic movements, and psychiatric disturbances—could "be avoided by anticipating them and by avoiding polypharmacy and potentially dangerous drug interactions."
Movement disorder emergencies in the elderly: Recognizing and treating an often-iatrogenic problem (Babak Tousi, Cleveland Clinic Journal of Medicine, 6-08).
A Life Shaken:My Encounter with Parkinson's Disease by Joe Havemann.
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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

Platelet Disorders
Platelet Disorder Support Association (PDSA, for people with ITP)
Platelet Disorders (Medline Plus, NIH and U.S. National Library of Medicine)

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Post-traumatic stress disorder

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).
In 'The Evil Hours,' A Journalist Shares His Struggle With PTSD (Dave Davies interviews David Morris on Fresh Air, NPR, 1-20-15). While embedded with troops in Iraq, David Morris almost died when a Humvee he was riding in ran over a roadside bomb. His book, The Evil Hours: A Biography of Post-Traumatic Stress Disorder, explores the history and science of post-traumatic stress disorder.
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.”
Post-Traumatic Stress Disorder For Dummies by Mark Goulston. Help your heart accept what your mind already knows.
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
How Trauma Can Help You Grow (Kristine Crane, U.S. News, 9-8-14) A 'profound awakening' – is not unusual among survivors of traumatic events. The phenomenon is called “post-traumatic growth” and it’s at the opposite end of the spectrum from post-traumatic stress syndrome, which almost always precedes it, says Melinda Moore."
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)
Navy SEAL Loses Battle with PTSD (Here and Now, WBUR, 1-14-13). For a Navy Seal, getting help for PTSD disqualifies you for security clearance, and in this case, Rob Guzzo, who served in Iraq, went for help too late. "For a SEAL, if you don’t have a security clearance, you don’t go on secret classified missions, therefore you’re not a Navy SEAL.”
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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.


"Sepsis can rage in response to incidents as seemingly benign as a playground scrape or a nicked cuticle from the beauty parlor."--Sepsis Alliance
Sepsis, defined (Sepsis Alliance) sep•sis -- "Sometimes called blood poisoning, sepsis is the body's often deadly response to infection....Sepsis has been named as the most expensive in-patient cost in American hospitals in 2011 at over $20 billion each year. Forty percent of patients diagnosed with severe sepsis do not survive. Until a cure for sepsis is found, early detection is the surest hope for survival. Up to 50% of survivors suffer from post-sepsis syndrome."
Sepsis symptoms (Sepsis Alliance)
What is sepsis? (PDF, Sepsis Alliance) "Everyday, we are exposed to a variety of infectious organisms such as bacteria, viruses, and fungi, through the air we breathe, water we drink, or even cuts and bruises we may acquire. Our immune system is constantly at work identifying and destroying these organisms, thereby keeping us healthy. Sometimes in response to a potentially serious infection, the immune system overreacts and ends up hurting our healthy cells and organs. This is a serious condition called sepsis."
What You Need to Know About Sepsis
(Nancy L. Snyderman, AARP, Aug/​Sept 2013). "While the symptoms of sepsis vary depending on where the infection starts, doctors often look for patients who seem confused or disoriented. Other symptoms include fever, chills, low body temperature, low blood pressure, rapid pulse, decreased urination, nausea and vomiting."
Attack of the Killer Sepsis (Al Martinez, AARP, 9-11-13) "Rushed to a hospital emergency room, I was diagnosed with blood poisoning caused by a fecal-based bacteria released into my blood stream by the biopsy" (a routine prostate examination in a doctor’s office).
Within a day of his eczema being infected Marc was dead (Jo Waters, Daily Mail Online, 2-27-12). "There are 102,000 cases of sepsis (previously known as blood poisoning or septicaemia) each year in Britain and it kills 37,000 people — more than breast, bowel and prostate cancer combined. Sepsis is also the biggest killer of pregnant women...few can spot the warning signs of sepsis. Tragically, it’s often confused with other conditions such as flu and so patients do not receive the right treatment until it’s too late."
Faces of Sepsis (compelling, enlightening, and cautionary stories about sepsis survivors and tributes to patients who died from sepsis--and indirectly a how-to and how-not-to manual for all of us, but particularly medical practitioners)
Faces of Sepsis: Renee Cawley - survivor . She nearly lost her limbs and life, and did lose two fingers. Being bit by a cat or dog when you have no spleen makes you vulnerable to terrible infection.
Causes of sepsis (NHS, UK) and treatments.
Personal stories (some stories of survival, some tributes to the ones who didn't make it, The U.K. Sepsis Trust).
Post-Sepsis Syndrome (PSS), a condition that affects up to 50% of sepsis survivors
Elderly Urinary Tract Infections (A Place for Mom's excellent overview)
Sepsis and Urinary Tract Infections (Sepsis Alliance) "Suspect Sepsis. Save Lives." Check out links on that site, but be prepared for anxiety!
The Unlikely Connection Between UTIs and Dementia (Dana Larsen, A Place for Mom, 5-14-12). "While a urinary tract infection may be easy to diagnose in a younger woman, an elderly woman’s UTI rarely causes clear symptoms—and may not involve any pain or discomfort. And believe it or not—in addition to being a leading cause of sepsis, a potentially life-threatening infection—UTIs contribute to dementia diseases by making them worse."
Sepsis and Pneumonia (Sepsis Alliance) "The most common source of infection, among adults, is the lung or lungs."
Sepsis (Blood Infection) and Septic Shock (linked to here because UTI can lead to sepsis)
"Septic shock is when an overwhelming infection leads to low blood pressure and the body's organs shut down."
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Shingles (herpes zoster)

Shingles (NIH Senior Health) Fifty percent of all Americans will have had shingles by the time they are 80. While shingles occurs in people of all ages, it is most common in 60- to 80-year-olds. Read this for info on relationship between chicken pox and shingles exposure.
New study alters long-held beliefs about shingles (Mayo Clinic, ScienceDaily, 2-1-11) "For decades, medical wisdom about shingles has been that it's a once-in-a-lifetime experience. The commonly-held belief is that patients are protected from a recurrence of the herpes zoster virus, which causes shingles, after one episode. But according to a new study, recurrences of shingles may be significantly more common than doctors have suspected."
Shingles: Hope Through Research (fact sheet, National Institute of Neurological Disorders and Stroke, NINDS) Shingles is more likely to strike in those over 60 (among other important statements).
Shingles in Alberta: Before and after publicly funded varicella vaccination. (Russell ML, Dover DC, Simmonds KA, Svenson LW, PubMed 10-4-13). "The declining rates of shingles among persons under the age of 10 years are consistent with an impact of the chickenpox vaccination program. The trend of increasing rates of shingles among older persons began prior to implementation of vaccination."
Shingles and Stroke Risk (Serena Gordon, HealthDay, WebMD, 1-3-14) "People who've had shingles -- a viral infection also known as herpes zoster -- before age 40 may have a higher risk of stroke years later, a large new study suggests. Adults who get shingles after 40 don't have an increased risk of stroke. But along with those who had shingles before 40, they do have a higher risk of heart attack and "transient ischemic attack" (TIA), sometimes called a mini-stroke, the study authors said."
Why are ever-younger adults contracting shingles? (Julia Belluz, MacLean's, 8-16-2010) It has to do with reduced exposure to chicken pox.
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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
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Stroke Causes, prevention, rehabilitation, and recovery

Stroke, information about (National Institute of Neurological Disorders and Stroke, or NINDS)
Stroke warning signs and symptoms (American Stroke Association)
NINDS clinical trial
What Is Stroke? (National STROKE Association)
Stroke (PubMedHealth fact sheet)
New Research on Stroke Rehabilitation and Recovery (listen online to Diane Rehm show, WAMU-FM, host Susan Page, 9-26-13) or read transcript ). Guests Peter Turkeltaub, Alex Dromerick, and Audrey Holland. There are two kinds of strokes; one kind is a bleeding event in the brain; a blood vessel bursts and blood inside the brain causes damage; the more common kind is a blood clot that prevents blood flow to a portion of the brain, which, deprived of enough blood or oxygen, is damaged. The larger the stroke, the less likely you are to survive; you are also more likely to survive the second type, from a blood clot that prevents flow--get to an emergency room immediately! Excellent program--listen or read!
CDC: One-Fourth Of Heart Attack And Stroke Deaths Preventable (Scott Hensley, Shots, Health News from NPR, 9-3-13)
Stroke Risk Scorecard
Stroke Prevention (National Stroke Association)
National Aphasia Association
Brain stimulation helps stroke recovery (Nick Collins, The Telegraph, UK 11-17-13) Early treatment with magnets could help stroke sufferers recover their ability to speak, according to a new study.
The gray beyond: A family copes after tragedy (Keith Alexander, Linda Davidson and Sandi Moynihan, Washington Post, 7-27-13) "Thomas “TC” Maslin easily reads to himself the local newspaper or latest issue of the Economist. Reading aloud a simple children’s book is another story"
My Mother’s Stroke (Joyce Wadler, NY Times, 10-24-14) An 87-year-old woman’s carefully planned exit is knocked off course by a stroke.
Texas Tech Health Sciences Center’s STAR Program Offers Musical Therapy For Victims Of Aphasia (print and audio, Ariel Walden, KFYO News Talk, 7-25-13)
Oklahoma State University-Tulsa's aphasia camp is hearing kind words (Shannon Muchmore, Tulsa World, McClatchy-Tribune Information Services, 7-29-13)
Woman survives being 'locked in' after a stroke (MedStar National Rehabilitation Network). When she came to MedStar National Rehabilitation Hospital for therapy, she was in a ‘locked in’ state, meaning she could understand what you might be saying to her, but the words wouldn’t come out at all. Her rare ‘locked in’ state also affected all of her motor skills.
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.
Children Don’t Have Strokes? Just Ask Jared (Jonathan Dienst, writing about his son, Jared, NY Times, 1-18-10)
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.
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Act 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.
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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)
Finding My Voice (Barry Yeoman, reprinted in Saturday Evening Post May-June 2014)
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."
An Unlikely Speaker: On Stuttering and the Memoir (Katherine Preston, The Millions, 8-28-13). By the author of Out With It: How Stuttering Helped Me Find My Voice. “A frank, encouraging, and fresh exploration of a problem that's more widespread than we think."--Margaret Drabble
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."
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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 lesbian 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)
Support Groups: The Changes and Challenges They Will Bring to Your Life (Christina J. Werdebaugh, the Director and Support Group Leader of the West Virginia IC Resource Center, on BlogTalkRadio)

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Tourette Syndrome

Listing only a few of many available resources.
Tourette Syndrome Association (TSA)
The Tourette Syndrome & OCD Checklist: A Practical Reference for Parents and Teachers by Susan Conners
Tic Talk: Living with Tourette Syndrome: A 9-Year-Old Boy's Story in His Own Words by Dylan Peters. TS is a neurological disorder that affects roughly 100,000 Americans, according to NIH. It most often strikes youngsters between the ages of six and nine.
Natural Treatments for Tics and Tourette's: A Patient and Family Guide by Sheila R. Rogers
The World's Strongest Librarian: A Memoir of Tourette's, Faith, Strength, and the Power of Family by Josh Hanagarne. Josh Hanagarne was six years old and onstage in a school Thanksgiving play when he first began exhibiting symptoms of Tourette's; he wasn't officially diagnoseduntil his freshman year of high school. By the time he was twenty, the young Mormon had reached his towering adult height of 6’7” when—while serving on a mission for the Church of Latter Day Saints—his Tourette’s tics escalated to nightmarish levels. With humor and candor, he explores the mysteries of this little-understood disorder and the very different worlds of strongman training and modern libraries. Read these lovely stories about his life and his book: 'World's Strongest Librarian' strengthens writing voice in new memoir (Ben Fulton, Salt Lake City Tribune, 5-8-13 -- Josh Hanagarne finds refuge from Tourette's in reading, heavy lifting and now writing) and this Boston Globe review (Jesse Singal 5-21-13). And take time to listen to this funny and inspiring speech to librarians (closing keynote, Internet Libraries conference, 10-30-13)
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Traumatic Brain Injury (TBI)

What is Traumatic Brain Injury?, 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.
Brainline.org (preventing, treating, and living with traumatic brain injury). See especially Ask the Expert Q&As
Few Retired N.F.L. Players Opt Out of Proposed Concussion Settlement (Ken Belson, NY Times, 11-3-14)
Nascar’s Pockets Seem Deep Enough for Retirees’ Concussion Worries (Juliet Macur, NY Times, 8-4-14) “The N.F.L. thing really opened my eyes to how dangerous head injuries really are... I realized that I could wake up tomorrow and not know who I am.”
Many Ex-Players May Be Ineligible for Payment in N.F.L. Concussion Settlement (Ken Belsn, NY Times, 10-17-14)
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)
• Educational fesources, Brain Trauma Foundation (sources of information on TBI)
Parents of Young Athletes: Protect Your Child’s Brain in 8 Steps (Ingrid Wickelgren, Scientific American, 8-5-14)
Being with Rachel: A Personal Story of Memory and Survival by Karen Brennan. How she coped with the severe brain injury of her 21-year-old daughter (in a motorcycle accident), and the long road to reconstructing her life and memory.
To Love What Is: A Marriage Transformed by Alix Kates Shulman (love story of a husband and wife facing his traumatic brain injury and her transformation into caregiver)
The press release that fell and hit its head Brenda Goodman, Covering Health, AHCJ, 4-22-14). "Our definition of traumatic brain injury was one in which one loses consciousness for at least five minutes or is hospitalized overnight due to symptoms associated with it for at least one night. So that’s a little more than a concussion."
What Is Concussion? What Is Mild Traumatic Brain Injury (MTBI)? (Medical News Today 7-27-09)
Protecting Athletes: Concussions (Kojo Nnandi show, with guests Stephen Haas, Juliet Macur, Robert Stern, 7-22-14). Conversations about protecting athletes from concussions often focus on football. But several incidents at this summer's World Cup triggered questions about what FIFA, soccer's governing body, does to keep players safe. Kojo explores the emerging science and policies behind debates about concussions and professional and amateur sports.
Mild Brain Injury and Concussion (Brain Injury Association of America). See personal stories about brain injury.
TBI Ten Years Later: A Mother's Story Continues (Dixie Fremont-Smith Coskie, for BrainLine).
Three Hard Things about Brain Injury (writer and poet Louise Mathewson's blog, 8-11-14). See also Coming Out of Hiding Through Writing, The Medicine of Writing (10-15-12), Blessings for Those with Brain Injuries (a poem).
A Life Interrupted: Living with Brain Injury, poetry by Louise Mathewson.
Caregiving for Someone with a TBI: A Unique Experience (Carolyn Rocchio, BrainLine). Her son sustained a TBI in a 1982 auto crash.
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Tuberculosis (MedlinePlus, NIH)
Tuberculosis (overview, Mayo Clinic)
Tuberculosis (World Health Organization, WHO)
At Europe's Doorstep, Fierce War Against TB (Gautam Naik, Wall Street Journal, 12-31-12). Part of a series, possibly behind a paywall. "In Western Europe, drug-resistant strains of TB are starting to make a wider appearance. Last year, Britain reported 421 cases of drug-resistant TB, a 26% jump from the previous year. Most Western Europe cases can be traced to the TB-wracked eastern half of the continent. (In contrast, there were 124 case of drug-resistant TB in the U.S. in 2011.)"..."At least 30% of all new TB cases in Eastern Europe are now resistant to key front-line drugs. The equivalent official rate is 6% for China and 2.1% for India, though the latter is probably an underestimate. (In absolute numbers, India and China have far more multidrug-resistant cases because of their larger populations.)"
Nevada epidemiologist: Deaths of young mother, baby have put tuberculosis back on radar (Associated Press, 10-9-13). Las Vegas: "The winning battle against tuberculosis in the United States may, ironically, be part of the reason why the disease wasn’t detected in a young Las Vegas mother and her baby until it was too late, experts said."

When Doctor Visits Lead to Legal Help (Erik Eckholm, NY Times, 3-23-10) Medical care alone is not enough to address the health woes of the poor, which are often related to diet, living conditions and stress. Doctors at Children’s Hospital, "using a protocol that started 18 months ago, referred 500 patients for legal aid last year. Some needed help getting food stamps, heating aid or cash welfare that had been wrongfully denied; some received help with evictions or home repairs; others got legally mandated help for children with learning disabilities."


American Academy of Pain Management
American Academy of Pain Medicine
Pain Association. Resources include a list of conditions characterized by pain and A Consumer Guide to Pain Medication and Treatment
American Chronic Pain Association . Among other resources provided, information about Conditions, A to Z and a free downloadable PDF, ACPA Resource Guide to Chronic Pain Medication and Treatment
American Fibromyalgia Syndrome Association (AFSA)
American Pain Foundation (which has absorbed the National Pain Foundation)
National Fibryomyalgia & Chronic Pain Association (NFMCPA)
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)
Pains (Janice Lynne Schuster and the Pain Project). Many articles, including
--An Unwelcome Guest: Living with Chronic Pain (Schuster, Disruptive Women in Health Care, 12-15-14)
--Draft of the National Pain Strategy has been published to the Federal Register (PAINS Project, 4-2-15) the National Institute of Neurological Disorders and Stroke (NINDS) Office of Pain Policy today published a notice soliciting public comment on the draft National Pain Strategy.
--In pain? (Some resources. Janice Lynne Schuster's site.)
Complex regional pain syndrome (CRPS, Mayo Clinic staff)
Complex Regional Pain Syndrome fact sheet (National Institute of Neurological Disorders and Stroke
Chronic back pain
Dancing with Pain (one approach to pain relief)
The Facial Pain Association (TNA) (support for those with trigeminal neuralgia and other facial pain conditions). Among publications available from TNA: Striking Back : The Trigeminal Neuralgia and Face Pain Handbook by George Weigel and Kenneth E. Casey (to be updated this year)
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)
Quality of Life Scale , a measure of function for people with pain (pdf, American Chronic Pain Association)
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 pain not only hurts, it also causes isolation and depression. But there’s hope. (Rachel Noble Benner, Wash Post, 1-12-15)
One in 3 women could potentially be spared chronic pain after breast cancer surgery (Medical Press, 2-25-15)
Here’s What’s Wrong With How US Doctors Respond to Painkiller Misuse(Maia Szalavitz, Substance.com, 1-13-15).
Opioid Misuse In Chronic Pain Patients Is Around 25%, New Study Shows (CJ Arlotta, Forbes, 4-1-15)

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• 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)

• Bouton, Katherine. Shouting Won't Help: Why I--and 50 Million Other Americans--Can't Hear You (Bouton tells her story about adult onset of profound deafness, and profiles others with similar losses -- an opera singer, a pastry chef, a psychoanalyst, and, as Jerome Groopman writes, "offers a wealth of information and insight about a frustrating and isolating condition."

• 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, Jonathan. 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).

• Hathaway, Katharine Butler. The Little Locksmith: A Memoir In 1895 a specialist straps five-year-old Katharine, then suffering from spinal tuberculosis, to a board with halters and pulleys in a failed attempt to prevent her being a "hunchback." This memoir charts Katharine's struggle to transcend physical limitations and embrace her life, her body and herself. PW: "Hathaway treats the actual events in her life as practically irrelevant: the story she emphasizes is her spiritual and creative struggle to claim "selfish" time to write, her intense loneliness, her startlingly frank observations about her sexuality and her rebellion against the belief that an imperfect person does not experience desire."

• 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") . See Christine Montross's review in Book World (2009)

• 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

• Pistorius, Martin. Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body. His story is told briefly on All Things Considered: Trapped In His Body For 12 Years, A Man Breaks Free (Lulu Miller, NPR, 1-9-15) What would you do if you were locked in your body, your brain intact but with no way to communicate? How do you survive emotionally when you are invisible to everyone you know and love? That's the first question asked by NPR's new program on human behavior, Invisibilia.

• Phillips, Jane. The Magic Daughter: A Memoir of Living with Multiple Personality Disorder

• Raeburn, Paul. Acquainted with the Night: A Parent's Quest to Understand Depression and Bipolar Disorder in His Children

• 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.

• 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).

[Go Top]


• 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
• Hathaway, Katharine Butler. The Little Locksmith: A Memoir In 1895 a specialist straps five-year-old Katharine, then suffering from spinal tuberculosis, to a board with halters and pulleys in a failed attempt to prevent her being a "hunchback." This memoir charts Katharine's struggle to transcend physical limitations and embrace her life, her body and herself.
• 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
• Shinoda, Jean. Close to the Bone: Life-Threatening Illness As a Soul Journey, on how living with the threat of death can take us to a deeper level (with a section about forming circles in time of crises)
• 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)
• Wallack, Max and Carolyn Given Why Did Grandma Put Her Underwear in the Refrigerator? (an explanation of Alzheimer's disease for children)
• 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).

"Not all wounds are so obvious. Walk gently in the lives of others." (author unknown)

Close to the Bone: Life-Threatening Illness As a Soul Journey, a book by Jean Shinoda on how living with the threat of death can take us to a deeper level (with a section about forming circles in the time of crises)

Video of a 40-Year-Old Deaf Woman Hearing for the First Time (Ben Dreyfuss, Mother Jone, 3-28-14). Get out a hankie!

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

"My genes, my love, are rubber bands and rope -- make yourself a structure you can live inside." ~Aimee Bender

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

Suicide Hotlines

“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 "