DYING, SURVIVING, OR AGING WITH GRACE

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

Selected Works

Enjoying the golden years
Autism, Asperger's syndrome, Savant Syndrome
(and donating your body or body parts)
Depression, bipolar disorder (manic-depressive illness), schizophrenia, and other forms of mental illness
Including suicide and assisted dying
Plus memorials and requiems
Plus cemeteries, coffins, headstones, memorials, etc.
(stories about 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)
What's wrong with American health care? Understanding the issues reform must address

Coping with chronic, rare, and invisible diseases and disorders
(and disabilities)


Helpful websites and other resources
Managing chronic pain
Rare and undiagnosed diseases
(invaluable links to organizations and research)
Memoirs of coping with chronic, rare, or invisible diseases or special health problems
Coping with invisible chronic illnesses
SPECIFIC CONDITIONS
ADHD, ADD, and other problems with attention
Addiction, including alcoholism (as Substance abuse)
Allergies and asthma (see also Autoimmune diseases)
ALS (Lou Gehrig's disease, Amyotrophic lateral sclerosis)
Alzheimer's (see also Dementia)
Arthritis
Autoimmune diseases
Autism spectrum disorders (including Asperger's Syndrome)
Back pain, chronic
Blindness and vision problems
Blood disorders
including Deep vein thrombosis (DVT)
Brain injury
Brain tumors and aneurysms
Chronic fatigue syndrome
Crohn's disease
Deafness and hearing loss
Dementia, non-Alzheimer's (including frontotemporal dementia, or FTD) (see Alzheimer's)
Diabetes
Disautomnia (and POTS)
Eating disorders
Epilepsy
Fibromyalgia (FMS)
Heart problems (cardiac disease)
Kidney disease, kidney failure, dialysis, kidney transplants
Lead poisoning
Late-stage Lyme disease (also called Chronic Lyme disease and late-stage neuroborreliosis)
Mental illness and mental health
(particularly bipolar disorder, depression, OCD, schizophrenia)
Migraine
Movement disorders
see also:
Parkinson's disease
Post-traumatic stress disorder (PTSD)
Sepsis
Shingles (herpes zoster)
Sleep apnea and other sleep disorders
Stroke
Stuttering (Stammering)
Tinnitus
Tourette Syndrome
Traumatic brain injury (TBI)



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). See links on NORD's website to various topics, including Rare disease information (alphabetically listed) and Resources and FAQs
OrphaNet (the portal for rare diseases and orphan drugs--a European database, in several langauges)
Disorders, A-Z (National Institute of Neurological Disorders & Stroke, NINDS). Subscribe to particular feeds.
List of rare diseases (Health on the Net)
FAQs about Registries (collections of information about individuals, usually focused around a specific diagnosis or condition)
The Rare Diseases Clinical Research Network (RDCRN) Contact Registry is a way for patients with rare diseases and their family members to learn about research studies they may be able to join.
How to find a disease specialist (National Center for Advancing Translational Sciences)
Rare Action Network (RAN), advocacy network working at the state level to improve the lives of the 30 million Americans living with a rare disease
Patient Organizations Database(NORD)
Diseases and conditions
Diseases and conditions (PubMed Health, alphabetical)
Blood disorders (National Heart, Lung & Blood Institute)
Infectious Disease Information, A to Z (CDC National Center for Infectious Diseases)
The Mighty Special pages with stories by and about patients with rare and chronic diseases. "We face disability, disease and mental illness together."
Office of Orphan Products Development
FDA Office of Orphan Products Development advances the evaluation and development of products (drugs, biologics, devices, or medical foods) that demonstrate promise for the diagnosis and/​or treatment of rare diseases or conditions
Rare Disease Day at NIH
NIH Office of Rare Diseases Research (ORDR)
Genetic and Rare Diseases Information Center (GARD) (National Center for Advancing Translational Sciences). See, for example, How to find a disease specialist.
Rare diseases, A to Z directory (Genetic and Rare Disease Information Center, GARD, in the National Center for Advancing Translational Sciences, NIH)
Rare Diseases with FDA-Approved Medical Products (GARD)• Medical and Science Glossaries (GARD)
Tips for the Undiagnosed (GARD)
Genetics Home Reference (NIH, National Library of Medicine)
How can I find a genetics professional in my area? (NIH, National Library of Medicine)
The Power Of Genes, And The Line Between Biology And Destiny (Terry Gross, Fresh Air, 5-16-16) As researchers work to understand the human genome, many questions remain, including, perhaps, the most fundamental: Just how much of the human experience is determined before we are already born, by our genes, and how much is dependent upon external environmental factors? Oncologist Siddhartha Mukherjee tells Terry Gross the answer to that question is complicated. "Biology is not destiny," Mukherjee explains. "But some aspects of biology — and in fact some aspects of destiny — are commanded very strongly by genes." The degree to which biology governs our lives is the subject of Mukherjee's new book, The Gene: An Intimate History.
The NIH Undiagnosed Diseases Program: Insights into Rare Diseases (William Gahl and colleagues, PMC 2014 Jul 15) This report describes the NIH Undiagnosed Diseases Program (UDP), details the Program's application of genomic technology to establish diagnoses, and details the Program's success rate over its first two years.
Undiagnosed Diseases Network (UDN -- NIH, The Common Fund)
Disease InfoSearch (Genetic Alliance)
Medical Mysteries (stories of patients with undiagnosed and hard-to-diagnose diseases and conditions)
Expanding the limits of modern medicine (Raymond MacDougall, Division of Intramural Research, NIH). NIH Undiagnosed Diseases Network will address abundance of mystery cases
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.
Johnson, Marc and Kathleen Gallagher. One in a Billion: The Story of Nic Volker and the Dawn of Genomic Medicine by Marc Johnson and Kathleen Gallagher. The story of a young boy with a never-before-seen disease, the first human being whose life was saved by genome sequencing—based on the authors’ Pulitzer Prize–winning reporting. Susan Okie's book review (WaPo 4-24-16) suggests the obstacles faced by both the medical team and the family, not to mention the young boy.
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
Living with Rare Diseases (NORD)
Rareshare (social hub building communities for patients, families, and healthcare professionals affected by rare disorders)
Medscape Reference
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!
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Allergies and asthma

See also Autoimmune diseases
Don't Kill the Birthday Girl: Tales from an Allergic Life by Sandra Beasley. 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.
Immunotherapy (allergy shots) effective for baby boomers suffering from seasonal allergies (press release, American College of Allergy, Asthma, and Immunology) Symptoms were reduced by 55 percent after 3 years of therapy
Medicare EpiPen spending outpaces prescription growth -Kaiser report (Reuters Market News, 9-20-16) U.S. government spending on Mylan Inc's EpiPen in the Medicare program for seniors and the disabled rose 1,151 percent from 2007 through 2014, while the number of EpiPen users grew 164 percent, the Kaiser Family Foundation said on Tuesday in an analysis. In 2007, when Mylan purchased EpiPen, the Medicare program spent $7 million on the product for 79,980 users, Kaiser said. In 2014, that spending rose to $87.9 million for 211,500 users, Kaiser said.
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).
Farm kids at lower allergy risk, even in their 70s (Anne Harding, Reuters Health, 6-1-10) Researchers in Sweden found that people who spent the first five years of their lives on a farm were about 20 percent less likely to have itchy, runny eyes and noses due to allergies, from age 16 up through to age 75. Only farms with livestock confer this protection, Eriksson noted. How contact with farm animals might cut allergy risk isn't clear, he added, although drinking unpasteurized milk and exposure to certain types of bacteria are two mechanisms that have been proposed.

Asthma In-Depth Report (New York Times)
A Breathing Technique Offers Help for People With Asthma (Jane E. Brody, Health, NY Times, 11-2-09) About the Buteyko method, a shallow-breathing technique developed in 1952 by Russian doctor Konstantin Buteyko.
Allergic and Environmental Asthma: Overview of Asthma (William F Kelly III and Michael A Kaliner, Medscape)
Kudos to Boston Children’s Hospital for release on acetaminophen and asthma study (HealthNewsReview, 8-31-16) Results from a study published in the New England Journal of Medicine on the first randomized, double-blind, controlled trial comparing acetaminophen to ibuprofen to treat pain and fever in children with asthma. No statistically significant differences were found between the two treatment arms. Previous observational studies had suggested that acetaminophen could exacerbate asthma symptoms in young children.Acetaminophen use will not worsen asthma symptoms in young children, according to a well-designed study. The acetaminophen medication used in the study, Little Remedies, costs about 50 percent more than the generic Children’s Advil – $8.86 versus $4.96, respectively – at Walmart. Do read the whole HNR entry.
Catching My Breath: An Asthmatic Explores His Illness by Tim Brookes
Nearly Half of Older Adults With Asthma, COPD Still Smoke: CDC (Health Day, 1-7-15) Quitting is 'challenging' and depression often plays a role, one expert says
More Menopausal Women Hospitalized for Asthma, Study Finds (Health Day, 9-3-13)
American Academy of Allergy Asthma & Immunology
Asthma May Influence Risk of Parkinson's Disease (HealthDay News, via Northwest Parkinson's Foundation, 9-4-15)
Shingles Risk 70% Higher for Adults With Asthma (Marcia Frellick, Medscape Medical News, 1-6-16) Note: Medscape requires free registration before providing articles.
Older asthma patients at increased risk for treatment failure (HealthDay News, via Pollen.com, 6-12-15) Asthma treatments, especially inhaled corticosteroids, are less likely to work for older patients, a new study suggests.
Men with Asthma Less Likely to Develop Lethal Prostate Cancer (Johns Hopkins Medicine, 5-13-15) Observational study does not prove cause and effect, researchers caution.
Older women with asthma: special challenges in treatment and self-management (Alan P. Baptist et al., Ann Allergy Asthma Immunol. 2014 Aug; 113(2): 125–130, via NCBI)
Rituals Can Help Older People Remember to Take Their Asthma Meds (Science Newsline, 8-5-14) Storing it in the bathroom and making it part of a daily routine may be helpful advice that doctors can give their older asthmatic patients who struggle to remember to take their daily prescribed medication.
50 Years On: Severe Childhood Asthma Persists in Middle Age (Medscape, via World Asthma Foundation)
First-Year Allergen Exposure Reduces Asthma, Allergy Risk (Journal of Allergy and Clinical Immunology, via World Asthma Foundation)
Grandmothers Who Smoke Cigarettes During Pregnancy May Increase Asthma Risk In Grandchildren Even if the mother did not smoke while pregnant. (Tanya Basu, American Association for the Advancement of Science, via Time, 9-29-15) The results of a Swedish study indicated that when a grandmother smoked while pregnant—regardless of whether the mother did as well—a child’s risk of asthma increased from 10 to 22%. Researchers think this shows that people can inherit a risk for asthma from previous generations. Scientists have long known that tobacco can affect gene expression, but researchers wondered if these affected genes were passed on to posterity.
Seniors Undertreated for Asthma, and Many Skip Inhalers (U.S. News & World Report, HealthDay News) Asthma often is misdiagnosed and undertreated in older people, with only 53 percent of those with asthma using prescribed inhalers, a small new study suggests.
Estrogen-only HRT may increase risk of asthma after menopause Estrogen-only hormone replacement therapy (HRT) may increase the risk of developing asthma after menopause, suggests a large scale study published ahead of print in the journal Thorax. Previous research has suggested that female hormones may have a role in the development and severity of asthma, say the authors. The disease is more common in young women after they have started having periods, while hospital admissions for asthma are more common among women than men.
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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)


Patient Voices: A.L.S. ( New York Times). Amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, affects parts of the nervous system that control voluntary muscle movement. The average life span of someone with A.L.S. is five years after diagnosis. Here, six men and women speak about how their lives have changed as a result of this devastating illness.
For A.L.S. Patients, a Hopeful Drug That Is Out of Reach (Angelina Fanous, Well, NY Times, 2-5-15). At the time, the drug Rilozule was the only treatment on the market for A.L.S., and it extended a patient's life only a few months. A new A.L.S. medication called GM6 has shown in a 12-person trial to dramatically slow down the progression on the disease. At this point Genervon Biopharmaceuticals was seeking accelerated approval, hoping the F.D.A. would make it available to the 30,000 patients hoping to try it,
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.
Last Stand (E. Wesley Ely, Pulse, 7-24-15) This may help you think twice about "quality-of-life" issues.
Rowing Without Oars: A Memoir of Living and Dying by Ulla-Carin Lindquist. A short and powerful memoir of discovering, as a 49-year-old mother of four, that she has ALS, a illness She is in excellent physical shape when she notes a weakening of muscular strength and senses there is a problem. A well-known Swedish journalist, she has produced a frank and informative account of her experience, which rather than feeling grim is a reminder to enjoy life, as she did in her final months. An excellent way to get an overview of how the disease might affect one's life.
...As long as we both shall live She just learned he has ALS. Then they proved there’s one thing it can’t take away "About 10 percent of its victims will live with it for longer than a decade. Five percent will make it past two decades. Stephen Hawking has lived a half-century with it....Eric, diagnosed two months ago, is one of the unlucky ones. The condition, which cripples nerve cells in the brain and spinal cord and eats muscles right off the bone, has progressed with such quickness that he marks his deterioration by the week." (Terrance McCoy, Wash Post, 5-24-15)
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
"Most doctors will tell you three to 10 years, but nobody really knows." (StoryCorps) Listen or read transcript. Patricia Mishler discusses with her daughters what it is like living with ALS, and her thoughts on knowing that the disease will one day take her life.
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.'"
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.

Luckiest Man: The Life and Death of Lou Gehrig by Jonathan Eig. This excellent biography of a baseball great ends with how he dealt with ALS during the final years of his life.
About ALS (ALS Association)
The late Paul Aiken's twitter feedn=2 twitter feed. 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.
Five myths about AL (Jeffrey D. Rothstein, WaPo, 8-22-14)
Ice Bucket Challenge (Wikipedia entry includes criticisms of this fundraising event)
Scientists are crediting the ALS Ice Bucket Challenge for breakthroughs in research (Robert Gebelhoff, Wash Post, 8-19-15). "...one year and more than $220 million in donations later, scientists at Johns Hopkins are claiming a major breakthrough in ALS research and are partly crediting the success to the massive influx of public interest.... the millions of dollars brought into the field has given researchers the financial stability to pursue "high risk, high reward" experiments." However, Ice bucket challenge participants keep getting hurt.
Petition (closed now): FDA Accelerated Approval of Genervon's GM604 for Use In ALS
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.
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.

Arthritis


The National Arthritis Foundation defines arthritis as “a complex family of musculoskeletal disorders consisting of more than 100 different diseases or conditions that destroy joints, bones, muscles, cartilage and other connective tissues, hampering or halting physical movement.” According to the Association of Health Care Journalists, "Osteoarthritis is the most common, affecting about 34 percent of adults over age 65. It is characterized by joint stiffness and transient to severe joint pain. It is prevalent in weight-bearing joints such as knees and hips and can affect the hands, back and neck, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases."
"Rheumatoid Arthritis (RA) is an auto-immune disease which causes the body to attack its own tissues, especially the synovium, a thin membrane which lines the joints. The attacks result in painful fluid build up in the joints and inflammation throughout the body. It commonly affects the hand, but can also strike other joints."
Arthritis Foundation (800-568-4045)
National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS)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)
List of Autoimmune and Autoimmune-Related Diseases (American Autoimmune Related Diseases Association)
Don’t Take Osteoarthritis Lying Down (Jane E. Brody, NY Times, 9-19-16) What "you eat and don’t eat, as well as whether and how you exercise, can affect your risk of developing arthritis and your ability to cope well despite its effects on your joints. Recent evidence indicates that osteoarthritis is not simply the result of years of wear and tear on the cartilage in important joints like knees and hips. Rather, it may be promoted, and perhaps initially caused, by chronic low-grade inflammation that is now also linked to other major chronic ills, including heart disease and Alzheimer’s disease, in which diet and exercise may play a protective role. One of the biggest mistakes people make when arthritis develops is to limit movement of the affected joint, which leads to stiffness and weakness that only makes matters worse....Much is known about the factors that increase the likelihood of developing arthritis, several of which are related to the way people live their lives. The most important of these – being overweight or obese – bodes ill for the future of millions of American adults, half of whom now weigh a lot more than they should." This is a must-read article! Covers important steps you can take to prevent or alleviate arthritis and arthritic pain." Rubber gloves and mesh rubber mats are particularly helpful if you have trouble opening jars, writes Brody.
Arthritis Supplies (online catalog of aids for daily living
Living Better with Arthritis (catalog of aids for arthritis--for comfort & therapy; communication; dressing/​grooming; foot care; house, car and garden; kitchen; resting and relaxation; bath.
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'
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)
Out of Joint: A Private and Public Story of Arthritis by Mary Felstiner (life with rheumatoid arthritis as experienced and studied by a feminist and historian).
• =Another Alice by Alice Peterson. Peterson got rheumatoid arthritis at 18, at the start of a promising tennis career
• =Blue Remembered Hills: A Recollection by Rosemary Sutcliff (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)

Autoimmune diseases


(these include Addison disease, arthritis (certain forms of), chronic fatigue syndrome, dermatomyositis, fibromyalgia, Graves' disease, Hashimoto's disease, inflammatory bowel disease, lupus, MS, myasthenia gravis, Sjogren syndrome, systemic lupus erythematosus)
Chronic fatigue syndrome
Fibromyalgia (FMS)
Researchers Piecing Together Autoimmune Disease Puzzle (Natalie Angier, NY Times, 6-19-01) Researchers have seen that a generalized predisposition toward autoimmunity may run in families, with one person suffering from, say, lupus, another from rheumatoid arthritis, a third from Graves' disease.
What’s Wrong with Me? (Meghan O’Rourke, Personal History, New Yorker, 8-26-13) I had an autoimmune disease. Then the disease had me. Today, researchers believe that they have discovered some eighty to a hundred autoimmune disorders, including disorders as various as lupus, multiple sclerosis, type 1 diabetes, and rheumatoid arthritis.
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 Are Autoimmune Disorders? (WebMD describes various autoimmune disease)
Autoimmune disorders (Medline Plus)
Autoimmune diseases fact sheet (WomensHealth.gov). Click on fact sheets for chronic fatigue syndrome, fibromyalgia, Graves' disease, Hashimoto's disease, inflammatory bowel disease, lupus, myasthenia gravis, stress and your health, and thyroid disease.
Autoimmune Disease (six-part overview)
healing auto-immune disease, by someone who’s been there (Sarah Wilson, on Hypothyroid Mom, 10-8-14) What she did to get on top of hey Hashimoto’s (hypoactive thyroid disease), and some advice from practitioners she's turned to for help.
Childhood Disrupted: How Your Biography Becomes Your Biology, and How You Can Heal by Donna Jackson Nakazawa. How childhood trauma, adversity, and stress affect our physical and emotional health as adults--and are linked to adult illnesses such as heart disease, autoimmune disease, and cancer--and how to heal). "Scientists now know on a bio-chemical level exactly how parents’ chronic fights, divorce, death in the family, being bullied or hazed, and growing up with a hypercritical, alcoholic, or mentally ill parent can leave permanent, physical “fingerprints” on our brains."
The Future of Probiotics (Robynne Chutkan, The Atlantic, 12-12-13) Hippocrates said that all disease begins in the gut. A gastroenterologist's predictions on how new treatments will begin there, too. "Italian researchers found that breast-fed children in Florence and Burkina Faso had similar microbes in infancy, but once they started eating the local fare their gut bacteria diverged dramatically. Florentine children consuming a typical Western diet high in sugar, fat, and meat had less bacterial diversity and more species associated with allergy, inflammation, and obesity. The children in Burkina Faso eating an unprocessed, high-fiber plant-based diet had more diverse species and more types associated with leanness. They also had larger numbers of bacteria that produce beneficial compounds called short-chain fatty acids, which may be important in suppressing disease."
Leaky Gut: The missing piece in many Autoimmune Diseases, like Hashimoto’s Thyroiditis (Jill Carnahan, MD, on Hypothyroid Mom blog, 4-23-15) Hyperpermeability or “leaky gut” syndrome is the name given to a very common disorder in which the cells lining the intestines become “leaky” due to inflammation. The abnormally large spaces present between the cells of the gut wall allow the entry of toxic material into the bloodstream that would normally be eliminated.
Wish by Spirit:A Journey of Recovery & Healing From an Autoimmune Blood Disease by John W. Young. 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)
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Deep vein thrombosis (DVT)


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)
Understanding Deep Vein Thrombosis ((DVT = Blood Clot, Usually in the Leg) (Stuart T. Haines, ClotCare Online) Many helpful explanations on this site, including Understanding the PT-INR Test (Marie B. Walker)
Slideshow: A visual guide to deep vein thrombosis (WebMD)
OrthoInfo on DVT (see in particular the illustration of how the blood clot develops)
DVT Coalition's DVT risk assessment tool
What are graduated compression stockings, where do I get them, and how do I put them on? (one of several helpful information pieces posted on Clotcare Online Resource)
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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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
BOOKS ABOUT BLINDNESS AND VISION PROBLEMS AND DISORDERS
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)




Celiac disease. (Sorry for so little on this topic. Later!) Why I hid my happy, healthy daughter’s medical diagnosis from her for as long as I could Susan Stillman, WaPo, 2-8-16) "They told us that while children with Celiac who eat gluten can appear to be fine, doing so continuously can cause damage in the longer-term that has been linked to an increased risk of intestinal cancers, osteoporosis, and infrequently neurological conditions like epilepsy."..."I think I'll start by going gluten-free for breakfast," she announced.

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.

Charcot-Marie-Tooth Disease (Patient Voices, NY Times interactive--listen to people living with C.M.T.). CMT is an inherited disorder affecting nerves in the hands, arms, feet and legs. Because it causes weakness in the hands, arms, feet and legs, C.M.T. can cause difficulty walking and performing tasks. Symptoms generally begin in childhood and progress slowly; patients eventually have difficulties with balance, walking and grasping objects. Here six men and women speak about living with C.M.T.

C. difficile

(Clostridium difficile)
C. difficile infection (Mayo Clinic) "Clostridium difficile (klos-TRID-e-um dif-uh-SEEL), often called C. difficile or C. diff, is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon."
Clostridium Difficile Infections (Medline Plus)
Consumer Reports Names Hospitals With High C. Diff Infection Rates (Jeneen Interlandi, Consumer Reports, 9-27-16) "The CDC has laid out a list of methods for tackling C. diff that includes detailed protocols for hand hygiene and room cleaning as well as suggestions about nurse-to-patient ratios and the importance of hospital leadership. But the agency lacks the authority to mandate such protocols, and it’s unclear how many hospitals are taking the initiative on their own. For example, the biggest risk factor for C. diff infection is antibiotic overuse. But the CDC reports that so far, only 39 percent of all hospitals have an antibiotic stewardship program in place."
C diff Remains a Challenge Even for Nation's Top Hospitals (Norra MacReady, Medscape, 9-30-16)
Clostridium difficile Infection (Daniel A. Leffler and J. Thomas Lamont, N Engl J Med 2015; 372:1539-1548, 4-16-16, DOI: 10.1056/​NEJMra1403772, For subscribers only). This 2015 review of C. difficile has a section on Fecal microbial transplantation. "[Safe and superior to vancomycin alone for recurrent *C. difficile* infection."
Faecal transplants beat antibiotics in clinical trial (Ed Yong, Phenomena: A Science Salon, 1-17-13) The first results from a faecal transplant trial have been published in the New England Journal of Medicine, and they are a resounding vindication for the technique.

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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.)
The Unbreakable Laura Hillenbrand by Wil S. Hylton (NY Times Magazine, 12-18-14). Do read this one.
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)
Gentle Medicine : Treating Chronic Fatigue and Fibromyalgia Successfully with Natural Medicine by Lily B. Casura. (Read the Amazon reviews.)
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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Deafness and hearing loss


Hearing Aids (National Institute on Deafness and Other Communication Disorders, NIDCD. Improving the lives of people who have communication disorders. )
Five Ways to Hear Better (Katherine Bouton, AARP, 7-15-15)
Deafness and hearing loss fact sheet (World Health Organization) Surveys key facts, congenital and acquired causes of hearing loss, prevention, impact, identification and management.
Shhh! America’s Most Common Workplace Injury Is Hearing Loss (Zhai Yun Tan, Kaiser Health News, 9-9-16) According to the Centers for Disease Control and Prevention, it is the most common work-related injury with approximately 22 million workers exposed annually to hazardous levels of occupational noise. Workers in the mining sector, followed by those in construction and manufacturing, are most likely to suffer from hearing impairment....to reduce these numbers, the Labor Department launched a challenge earlier this summer called “Hear and Now,” in which it is soliciting pitches for innovative ideas and technology to better alert workers of hazardous noise levels." "Ammon worked for several small construction companies building houses. He said he was never told to wear ear protection. His colleagues didn’t wear it either. No one talked about it and, even when he worked with loud equipment, he wasn’t aware of the need for it."
NIOSH Power Tools Database ("information about sound levels of different tools to encourage businesses to invest in quieter tools and machinery," from KHN article above)
About deafness and hearing loss (Action on Hearing Loss, UK)
An Entire Town Secretly Learned Sign Language To Surprise Their Deaf Neighbor (Pulptastic) Muharrem, a resident of a Turkish suburb, is a regular guy with hearing loss who communicates through sign language. But on this particular day, when he and his sister went around town, he noticed something different (courtesy of Samsung and his sister). A moving video.
Accommodations needed for deaf and hard-of-hearing students (Student Disability Services, Johns Hopkins University)
Understanding the Genetics of Deafness: A Guide for Patients and FamiliesHearing Loss (Wikipedia). The usual caveats apply: anyone can edit Wikipedia entries so at any given moment a piece might not be accurate. But it is often a good place to start, and this entry provides a good overview of issues and lots of references you can follow links to.
Definitions of disability terms (U.S. Dept. of Education)
Intellectual Disabilities and Hearing Loss (American Speech-Language-Hearing Association--ASHA)
Understanding Deafness: Not Everyone Wants to Be 'Fixed' (Allegra Ringo, The Atlantic, 8-9-13) Hearing people often assume that Deaf people would naturally want to take advantage of any method that could lead them to the hearing world — especially cochlear implants, the most advanced hearing technology we have. That assumption is far from true.
"Defending Deaf Culture: The Case of Cochlear Implants"
by Robert Sparrow (PDF, 2005). The Journal of Political Philosophy 13 (2).
The Persistent Stigma of Hearing Loss—Even 25 Years After ADA (Katherine Bouton, AARP, 7-29-15)
Hybrid Implants Could Help Millions Hear Better (Katherine Bouton, Health Talk, AARP, 8-5-15)
Why Did CDC Disability Report Exclude Hearing Loss? (Katherine Bouton, Health Talk, AARP, 8-11-15)
Occupationally-Induced Hearing Loss (The National Institute for Occupational Safety and Health, or NIOSH)
Listening with an Open Eye: Identifying Deaf and Hard of Hearing Actors
Listening with an Open Eye: Identifying and Working with Interpreters

BOOKS:
Deaf Like Me by Thomas S. and James P. Spradley. 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.
Shouting Won't Help: Why I--and 50 Million Other Americans--Can't Hear You by Katherine Bouton. (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."
Train Go Sorry: Inside a Deaf World by Leah Hager Cohen. 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.")
What's That Pig Outdoors?: A Memoir of Deafness by Henry Kisor. 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.
The Cry of the Gull by Emmanuelle Laborit. 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.) • a href="http://www.amazon.com/dp/1563682877/ref=nosim?tag=writandedit-20" target="_blank"> In Silence: Growing Up Hearing in a Deaf World by Ruth Sidransky.
A Loss for Words: The Story of Deafness in a Family by Lou Ann Walker.
Hands of My Father: A Hearing Boy, His Deaf Parents, and the Language of Love by Myron Uhlberg.
Alone in the Mainstream: A Deaf Woman Remembers Public School by Gina A. Oliva
The Gallaudet Dictionary of American Sign Language , ed. by by Clayton Valli
Learning American Sign Language: Levels I & II--Beginning & Intermediate
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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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Diabetes


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 (ADA, many resources)
Ask Your Questions (Diabetes Action Research and Education Foundation)
What I need to know about Eating and Diabetes (The National Institute of Diabetes and Digestive and Kidney Diseases -- NIDDK)
Healthy recipes (Diabetes Action Research and Education Foundation)
Advice for Newbies (David Mendosa)
Diabetic Connect, a social network for people with diabetes. "We make it easy to start conversations, share treatments, read and post treatment recommendations, etc."
Diabetes: The Invisible Epidemic (Palm Beach Post, special multimedia report and series)
A Life-Changing Diagnosis: Type 1 Diabetes (Aliyah Baruchin, Health, NY Times, 8-28-08) "Ninety percent to 95 percent of all cases of diabetes are Type 2, or adult-onset, a disease frequently linked to obesity. But Type 1, known as juvenile diabetes, is not governed by lifestyle. It is an autoimmune disorder in which the body attacks the beta cells in the pancreas that produce the hormone insulin. Because people with Type 1 produce no insulin, they cannot survive without injecting it before each meal, and they must test their blood several times a day to check their glucose levels." When one twin came down with the disease, the other twin became the first person to enroll in a clinical trial for an oral insulin.
Hot Drugs Show Sharp Price Hikes in Shadow Market (Robert Langreth, Bloomberg News, 5-6-15). Why diabetes drug prices are soaring. Sanofi and Novo “are taking the same price increase down to the decimal point within a few days of each other,” said Richard Evans, an SSR analyst. “That is pretty much a clear signal that your competitor doesn’t intend to price-compete with you.” A pattern of insulin makers matching each others price increases “certainly indicates a market that isn’t competitively healthy,” said David Balto, an antitrust lawyer and former Federal Trade Commission policy director. However, if two companies act independently to follow each other’s price increases, it’s not an antitrust violation, he said.
They call it "shadow pricing," when "prices for some competing drugs go up in lockstep, rising the same amount at about the same time."
Bernie Sanders calls for federal investigation of insulin makers for price collusion (Ed Silverman, STAT, 11-3-16) In his latest attack on the pharmaceutical industry, Senator Bernie Sanders has asked the Department of Justice and the Federal Trade Commission to investigate three insulin makers for price collusion. The practice known as shadow pricing was first reported by Bloomberg News. “The original insulin patent expired 75 years ago. Instead of falling prices, as one might expect after decades of competition, three drug makers who make different versions of insulin have continuously raised prices on this life-saving medication,” the lawmakers wrote. “In numerous instances, price increases have reportedly mirrored one another precisely.”
Drug makers in general argue that they have to raise prices in order to give substantial rebates to pharmacy benefit managers, which are the middleman that negotiate with health plans.
Diabetes Patients 'Screaming' About Insulin Costs (Mark Harmel, Medscape, 4-18-16) The ones who are really screaming are the Medicare patients with type 2 diabetes who haven't been on insulin for that long and, because they fall into the "doughnut hole," can't afford their insulin. The newly insured patients who didn't understand what it means to have a high deductible are struggling because they're paying the full price. And, some patients have seen their insulin copays increase to a level where they can't even afford the copays.
What's Your Type? With Diabetes, It Can Be Unclear (Miriam E. Tucker, NPR, 1-25-16) A drop in the number of newly-diagnosed diabetes cases is good public health news. But for the Type 1 diabetes community it's a source of frustration, because the numbers hide their story. While it's certainly the right direction for the more common Type 2 diabetes, the findings don't apply to Type 1, a different condition that appears to be on the rise and that is not caused by obesity or lifestyle factors.
Diabetes was once a problem of the rich. Now it belongs to the poor. (Niraj Chokshi, WaPo, 4-7-16) What was once predominantly a rich-country problem has become one that disproportionately affects poorer countries. With urbanization, eating habits are changing and so are levels of physical activity and access to healthy foods, but scientists don't have a full explanation for rising levels of diabetes among the poor.
Type 1 Diabetes TrialNet, a network of diabetes research centers.
My Beloved World by Sonia Sotomayor. This memoir from the first Latino and third female Supreme Court Justice makes very clear the role her diagnosis with juvenile diabetes at eight years of age played in her success. She had to give herself insulin shots even as a child and the process made her disciplined.
Diabetes Prevention That Works (Paula Span, New Old Age, NY Times, 12-26-14) "Increased exercise and healthier eating, the program’s central tenets, have become so broadly understood that you might wonder why sitting in a room with a dozen others helps people achieve them. But research shows that it does."
Public Radio’s Kurt Andersen Tackles Misunderstandings About Diabetes (Here & Now, 8-16-12). He talks about the disease and about myths that can kill (when the blood sugar falls low, it is NOT dangerous to give him an orange to suck on -- it might save his life). His novel, True Believers, a coming-of-age story and political mystery, features a main character who has diabetes I.
As Childhood Diabetes Rates Rise, So Do Costs — And Families Feel The Pinch: Study (Carmen Heredia Rodriguez, Kaiser Health News, 6-20-16) Although more prescriptions and frequent doctor’s visits help explain the difference in the health care costs generated by children with and without this illness, researchers were still surprised by the magnitude of the disparity.
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 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)
Obesity and Diabetes Tied to Liver Cancer (Nicholas Bakalar, NY Times, 10-14-16) "A large study has found that body mass index, waist circumference and diabetes are all associated with an increased risk for liver cancer. Liver cancer is the sixth most common cancer, and its incidence has tripled since the mid-1970s in the United States....For each 2-inch increase in waist circumference, the risk of liver cancer increased by 8 percent, even after controlling for B.M.I. And those with Type 2 diabetes had more than double the risk of liver cancer, even among the non-obese."
Guidelines Give A Boost To Diabetes Screening For Overweight Adults (Michelle Andrews, Shots, NPR, 12-4-15) In the past, "if a 55-year-old patient was overweight and she wanted to order a blood glucose screening test, some insurers balked at covering the test. She would sometimes have to justify it by stating that the patient was complaining of fatigue, for example. Now, insurers must cover the screening tests as well as counseling at the primary care practice office or off site at a hospital or elsewhere in the community.
Big Health Benefits to Small Weight Loss (Roni Caryn Rabin, Well, NY Times, 2-25-16) "Obese individuals who lose as little as 5 percent of their body weight can improve their metabolic function and reduce the risk of developing Type 2 diabetes and heart disease, a new study has found."
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.
100-year-old vaccine wins FDA approval for human clinical trials to reverse Type 1 diabetes (Jen Hayden, Daily Kos, 6-8-15) Scientists at Massachusetts General Hospital are hoping to prove that type 1 diabetes can be reversed with the help of a generic drug, a 100-year-old vaccine for tuberculosis.
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."
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)
Gastroparesis (ADA) Gastroparesis is a disorder affecting people with both type 1 and type 2 diabetes, in which the stomach takes too long to empty its contents (delayed gastric emptying). If the vagus nerve, which controls the movement of food through the digestive tract, is damaged or stops working, the muscles of the stomach and intestines do not work normally, and the movement of food is slowed or stopped. If other solutions to the problem do not work, the patient may need surgery to insert a feeding tube (called a jejunostomy tube), which allows him to insert nutrients (special liquid food) directly into the small intestine, bypassing the stomach.
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)
Endoscopic Approaches Emerging For Diabetes ( Christina Frangou, General Surgery News, 6-15-16) Promising, but Most Experts Agree ‘Prime Time’ Still a Ways Off
Diabetic Shoes Hub (this is not an endorsement--just to let you know it exists)
OrthoFeet (also, not an endorsement, just to note they sell shoes for people with diabetes).


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)
SEARCH for Diabetes in Youth
Diabetes Atlas (International Diabetes Federation)
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Dysautomnia (POTS)


(synonyms: FD; familial dysautomnia; Hereditary Sensory and Autonomic Neuropathy, Type III (HSAN, Type III); Hereditary Sensory Neuropathy Type III; HSAN-III; HSN-III; Riley-Day Syndrome; post orthostatic tachycardia syndrome (POTS).
Dysautonomia, Familial (National Organization for Rare Disorders's helpful explanations and links to further sources of information and help). Writes one woman who is writing a book about dysautomnia, Deborah, "Dysautonomia is often listed as the familial type, which is genetic, and strikes when children are young. But there are other dysautonomias where the automatic (autonomic) processes slow down, malfunction, and cause general havoc from head to toe. More young women are now being diagnosed with POTS, post orthostatic tachycardia syndrome, and don't realize that it is more than a heart problem, it is an assault on the entire body. POTS used to be listed on NORD when I was first diagnosed in 1994, but now there are many more resources. It is one of those "invisible chronic diseases" because I could look so healthy, while having a blood pressure of 46/​30 and a body temperature of 92 degrees."
The Dysautonomia Information Network. This site keeps growing and has great resources.
Dysautonomia International (covers POTS and familial dysautonomia).
Support groups, practical advice, and other resources for patients (linked on website of Dysautonomia International)
NINDS Dysautomnia information page
Dysautomnia Foundation: http:/​/​www.familialdysautonomia.org/​
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Dyslexia
Understanding Dyslexia and the Reading Brain in Kids (Holly Korbey, Mind/​Shift, KQED, 10-1-15)
Dyslexia (Sally E. Shaywitz, Yale Center for Dyslexia and Creativity, Scientific American, Nov. 1996) A new model of this reading disorder emphasizes defects in the language-processing rather than the visual system. It explains why some very smart people have trouble learning to read.
Dyslexia: An Overview (Smart Kids, Learning Disabilities) Dyslexia is the most common learning disability, affecting one’s ability to read, write, spell, or do math. Dyslexia is a result of the way the brain is wired, making it difficult to process sounds heard in spoken language. Children with dyslexia often have significant strengths, and when their learning challenges are addressed they excel in school and in life. Read the signs and symptoms at different levels of schooling.
The Upside of Dyslexia (Annie Murphy Paul, Sunday Review, NY Times, 2-4-12) People with dyslexia, who have a bias in favor of the visual periphery, can rapidly take in a scene as a whole — what researchers call absorbing the “visual gist.” And in some situations, it turns out, those with dyslexia are actually the superior learners.
Defining My Dyslexia (Blake Charlton, Opinion, NY Times, 5-22-13) Defining dyslexia based solely on its weaknesses is inaccurate and unjust, and places too grim a burden on young people receiving the diagnosis. A more precise definition of dyslexia would clearly identify the disabilities that go along with it, while recognizing the associated abilities as well.
Words Failed, Then Saved Me (Philip Schultz, NY Times, 9-3-11) "I was well into middle age when one of my children, then in the second grade, was found to be dyslexic. I had never known the name for it, but I recognized immediately that the symptoms were also mine. When I was his age I’d already all but given up on myself....When I did finally learn to read, my teachers didn’t have much to do with it."
Scientists Say Dyslexia May Not Be Neurological Disorder (David L. Wheeler, Chronicle of Higher Education, 1-22-92)

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


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
About Epilepsy: The Basics (Epilepsy Foundation) See links to What is epilepsy? What is a seizure? What happens during a seizure? Who gets epilepsy? What causes a seizure? What are the risk factors for epilepsy? Is epilepsy inherited? How serious are seizures? Types of seizures. Triggers of seizures. Epilepsy Hotline: 1-800-332-1000 (en espanol: 1-866-748-8008)
Types of epilepsy syndromes (Epilepsy Foundation)
Battling Epilepsy, and Its Stigma (Aliyah Baruchin, NY Times, 2-20-07) "Fifty million people have epilepsy worldwide, and more than 2.7 million in the United States, half of them children. Especially in its intractable form, also called refractory epilepsy, the disorder — and the side effects of epilepsy medications — can cause problems in learning, memory and behavior, and indelibly alter development. It can also consume families, monopolizing their time, money and energy. Yet despite the number of people with epilepsy — the disorder affects more Americans than do Parkinson’s disease, multiple sclerosis and Lou Gehrig’s disease combined — it still carries a stigma that dates to ancient civilizations. Many patients, doctors and families say that stigma hampers care, public recognition and the ability to raise money for research." This wonderful piece brings those statistics to life in the story of one child, Nora Leitner.
Implantable Devices Could Detect and Halt Epileptic Seizures (Aliyah Baruchin, Scientific American, 7-3-12) Electrical stimulation, brain "cooling" and drug-delivery devices are all being developed as antiseizure tools
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)
A Mother and Daughter: How Epilepsy Made Us Stronger (Ayun Halliday & India Kotis, comics journalism, at Narratively, At four years old, my daughter starting shaking uncontrollably, sending us on a 14-year roller-coaster ride from sorrow to frustration to coping to control. It wasn’t until the seizures finally stopped that we both realized how much epilepsy had shaped us.
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.
Information for Professionals (Epilepsy Foundation)
The Man Who Wasn't There: Investigations into the Strange New Science of the Self. Anil Ananthaswamy writes about what happens when our sense of self is compromised, how our how our body feels, for example, when our narrative, autobiographic self is damaged. Among other things, he writes about ecstatic epilepsy.
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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)
Patient Voices: Fibromyalgia (NY Times Health Guide) With its generalized symptoms of pain, fatigue and digestive issues, fibromyalgia can often hide as something else for many years. Worse, some professionals doubt the existence of this condition, which can also cause chest pains, brain fog and depression. Here, six men and women speak about living with fibromyalgia. Join the discussion.
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)
Focusing on Fibromyalgia (NIH)
Q&A about fibromyalgia (National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Fibromyalgia (Wikipedia's entry on this is lengthy and heavily referenced)
Exercise for fibromyalgia (PubMed Health, Cochrane Database of Systematic Reviews 10-17-07)
Professor Marlene “Molly” Benjamin Explores Philosophy, Memoir and Medical Trauma in The Catastrophic Self "Fibromyalgia is perhaps the best example of a post-modern illness – an illness that combines biological and cultural features so intimately that it is hard to disentangle them, an illness that demonstrates the deep connection between body and mind..."
Fibromyalgia (American College of Rheumatology)
Acupuncture May Help Ease Fibromyalgia Pain, Study Finds (Steven Reinberg, Health Day, 2-16-16) (Story reviewed by Health News Review.
Fighting Fibromyalgia (Lisa Robertson's blog)
Fibro and Fabulous (Kimberley Linstruth-Beckom's blog)
Fibromyalgia Experiment ("Sarakastic"'s blog)
Women and Fibromyalgia
Cheaper drug first (Markian Hawryluk, The Bend Bulletin, 8-19-10) Insurance forces patients to try older drugs before getting new ones.
"The debate has boiled over in recent years among doctors treating patients with fibromyalgia, a systemic condition marked by chronic pain and a host of difficult-to-treat symptoms. Until recently, there were no drugs specifically tested and approved for the treatment of fibromyalgia. Instead, doctors used a variety of medications approved to treat things like depression, seizures, pain or muscle spasms, a practice known as off-label use.
"Then in 2007, Pfizer's Lyrica became the first drug approved by the Food and Drug Administration specifically for the treatment of fibromyalgia. Doctors thought it would be their go-to medication for treating the condition, but insurers thought differently....
"Physicians were stunned that insurance companies would force them to prescribe a drug that wasn't even approved for fibromyalgia before they could use a drug that was."
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


This topic now has a page of its own:

Cardiovascular disease: Heart and coronary conditions and care


http:/​/​www.comfortdying.com/​cardiovascular_disease_130815.htm
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Hepatitis C virus (HCV)

Viral Hepatitis -- Hepatitis C information (Centers for Disease Control and Prevention) Hepatitis C is a liver infection caused by the Hepatitis C virus (HCV). Hepatitis C is a blood-borne virus. Today, most people become infected with the Hepatitis C virus by sharing needles or other equipment to inject drugs. For some people, hepatitis C is a short-term illness but for 70%–85% of people who become infected with Hepatitis C, it becomes a long-term, chronic infection. Chronic Hepatitis C is a serious disease than can result in long-term health problems, even death. The majority of infected persons might not be aware of their infection because they are not clinically ill. There is no vaccine for Hepatitis C. The best way to prevent Hepatitis C is by avoiding behaviors that can spread the disease, especially injecting drugs. Hepatitis C virus infection can last a lifetime and lead to serious liver problems, including cirrhosis (scarring of the liver) or liver cancer.
What you need to know about hepatitis C (fact sheet, National Institute of Diabetes and Digestive and Kidney Diseases, NIDDK, NIH)
Hepatitis C FAQs for the Public (CDC)
Hepatitis C Medications (HCV Advocate)
HVC Advocate newsletter
Children exposed to Hepatitis C may be missing out on treatment (Elana Gordon, Kaiser Health News, 7-28-16)
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HIV/​AIDS

These links will barely tap the surface but can get you started.
AIDSInfo (NIH) The latest information and resources on HIV/​AIDS research, clinical trials, federal treatment guidelines, and HIV-related therapies.
Federally approved HIV/​AIDS medical practice guidelines (AIDSinfo)
NIH Office of AIDS Research (gateway to many helpful resources)
NIH AIDS Research Information AIDS research fact sheets and updates from the Institutes and Centers leading the NIH AIDS research agenda.
National Library of Medicine HIV/​AIDS Information AIDS resources from the NIH's medical library (the world’s largest)
PubMed (searchable resource: more than 21 million citations for biomedical literature)
Black AIDS Institute
Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents (Clinical Guidelines Portal, AIDSInfo)
Dying Words: The AIDS Reporting of Jeff Schmalz and How It Transformed The New York Times by Samuel G. Freedman and Kerry Donahue
AIDS in the Heartland (Jacqui Banaszynski, St. Paul Pioneer Press, Summer 1987, posted on Storylines). This series was awarded the 1988 Pulitzer Prize in Feature Writing
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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.
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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 IllnessAwareness Conference (September 2011, virtual conference, listen to on-demand episodes 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


Kidney Disease, A-Z
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.
Coalition for Supportive Care of Kidney Patients.
Disparities found in hospice care among older dialysis patients (Liz Seegert, Health Journalism, AHCJ, 11-20-15)
What I need to know about Eating and Diabetes (The National Institute of Diabetes and Digestive and Kidney Diseases --NIDDK)
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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.

Lead poisoning


How local media coverage is forcing Cleveland to try to finally fix its lead problem (Erica Berry, Columbia Journalism Review, 2-9-16) This piece provided leads to the following resources.
Toxic Neglect: Curing Cleveland's legacy of lead poisoning (Rachel Dissell, Brie Zeltner, The Plain Dealer, 10-20-15). A twenty-part series on the region’s mishandling of the persistent lead problem, and what could be done to fix it. See especially Even low levels of lead poisoning have a big impact on health of kids: Toxic Neglect
Lead: America's Real Criminal Element (Kevin Drum, Mother Jones, Jan.-Feb. 2013) New research finds lead the hidden villain behind violent crime, lower IQs, and even the ADHD epidemic. And fixing the problem is a lot cheaper than doing nothing.
How Flint water crisis emerged
This is how toxic Flint’s water really is (Christopher Ingraham, Washington Post, 1-15-16)
Lead: Crisis Abandoned (IdeaStream's excellent series, including In Cleveland, Lead Removal Is Less About Water And More About Old Buildings and New Legislation Aims To Alert Communities Faster When Lead Threat Emerges. Nick Castele's digital maps show lead's uneven distribution in the community, and highlight its association with infant mortality and poverty rates.
Untold cities across America have higher rates of lead poisoning than Flint (Yanan Wang, Wash Post, 2-4-16)
Our Children At Risk: The Five Worst Environmental Threats to Their Health. Chapter 3, Lead. (Natural Resources Defense Council, Nov. 1997). Here's table of contents. The threats: lead, air pollution, pesticides, environmental tobacco smoke, contaminated drinking water.
Educational Innovations for Children Affected by Lead (CDC 2015)
Looney Gas and Lead Poisoning: A Short, Sad History (Deborah Blum, Science, then Wired, 1-5-13).
Lead Poisoning and the Middle Class: The Silent Epidemic That Doesn't Discriminate (Lynne Peeples, Huff Post, 3-15-13)
Deceit and Denial: The Deadly Politics of Industrial Pollution by Gerald Markowitz and David Rosner
Lead Safe America Foundation, producers of the film MisLEAD America: America's Secret Epidemic
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Lupus. Missed Cell Signals in Lupus: Find Me and Eat Me (Norman Bauman, Rheumatology Network, 6-22-14). Norman's excellent writeup of Systemic lupus erythematosus (Larissa Lisnevskaia, MDa, Grainne Murphy, PhDb, Prof David Isenberg, MDbLancet, Nov. 2014)
Having a Type-A Disease (Amanda Palley, Lenny, 5-25-16) How illness taught a television executive that it's OK to admit weakness.

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."
Losing Our Memory and Finding Each Other (Michelle Marie Wallace, Narratively, The Weekender, 8-30-15) "A battle with Lyme Disease decimated my memory right as Alzheimer’s did the same to my grandfather—but surrendering our thoughts brought us closer together than ever."..."I’d been sick with Lyme disease for eight years, though undiagnosed, and struggling to hide the slow spread of neurological symptoms. I had the sense that time was running out, but, as no doctors had ever found anything wrong with me..."
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)
MyLymeData (a patient-powered research project for chronic Lyme disease). Add your Lyme data to MyLymeData to help find a cure for Lyme disease.
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
Why is it so hard to test for Lyme disease? (New England Center for Investigative Reporting (NECIR), The Takeaway, PRI, WGBH, and WNYC, 7-14-14)
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.
'Doctors told me I was crazy': Avril Lavigne reveals fight to get diagnosed with Lyme disease took EIGHT MONTHS... (Heidi Parker, DailyMailOnline, 4-16-15) "Singer reveals it took her eight months to get diagnosed properly. Doctors told her she was crazy and that her ailment did not exist. Symptoms of the disease range from headaches and joint pain to severe fatigue, heart palpitations, paralysis of the face and even dementia. If not caught and treated early enough with antibiotics the condition can persist for years. The disease was recently highlighted after Real Housewives Of Beverly Hills star Yolanda Foster contracted it, who reveled she has lost the ability to read, write or even watch TV because of it. ...It was only several months later of, after a number of emergency room visits that a specialist finally diagnosed her."
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)
Crystal Hefner Shares The Health Problems Breast Implants Can Pose (Bruce Y. Lee, Forbes, 7-24-16) She was diagnosed with Lyme disease and toxic mold, but realized that her symptoms matched those mentioned on a breast implant illness website and Facebook groupwith almost 3,000 members, she realized that her symptoms matched.

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Migraine


The Daily Headache (Kerrie Smyres’ blog that looks candidly with living with headaches & migraines) See Beyond Kittens, Beyond Angels (Paula Kamen, Opinion, NY Times, 3-10-08) On the support those with chronic pain or chronic conditions can get from blogs about conditions such as migraine. She talks particularly about blog entries in The Daily Headache, such as The Thief and Grief ("Headaches steal so much of your life") and Trying Again After Migraine Cancels Plans
National Migraine Association (MAGNUM). See also the story Finding Good Migraine Care a Headache for the Uninsured (Amanda Gardner, BusinessWeek 4-12-10)
Women With Migraine May Face Higher Threat of Heart Disease, Stroke (MedlinePlus, 6-1-16) Researchers say it should be considered an independent risk factor for future heart trouble. "Specifically, women with migraines had about a 39 percent higher risk of heart attack, a 62 percent higher risk of stroke and a 73 percent higher risk of heart surgery...[and] migraine was linked with a 37 percent higher risk of dying from a heart attack or stroke, the findings suggested.
Headache Fact Sheets (National Headache Foundation)
MAGNUM Migraine Awareness Group: A National Understanding for Migraineurs
ACHE American Headache and Migraine Association (AHME)
American Headache Society

Patient Voices: Migraine (NY Times Health Guide)
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)
Help for Headaches (Ontario site)
27 Foods That Can Trigger Migraines (Health Central, an annoying format, but helpful)
Keeping a Migraine Diary (Health Central)
The Unrelenting Headache (Dr. Lisa Sanders, Diagnosis, NY Times, 5-17-13). Sometimes a headache is not just a headache.
Shaking It Off (Jeff Tweedy, NY Times, 3-5-08). Known primarily as the lyricist, lead singer and guitarist of Wilco, one of America’s most popular and critically successful rock bands, Tweedy is also a lifelong migraine sufferer whose headaches were for decades compounded by bouts of depression and panic disorder. In this personal piece, he relates how migraines and mood disorders affected his musical career, how he struggled with addiction and painkillers, and how developing the ability to treat and manage his depression and panic helped him to remain migraine-free. "I tried a lot of different medication to ease the migraines and to be honest the painkillers never worked better than anything else — it didn’t work better than Imitrex. The way serious painkillers like hydrocodone and oxycontin work is that they make you not care about the pain and that was really desirable to me — to be able to continue to work and be creative and make music and actually feel normal. It was something that allowed me to be functional for a while."
PFO and Migraine: "Hole in the Heart" and Migraine Connection? "examines the connection between migraines and the PFO (patent foramen ovale), a hole in the wall of the heart that divides the right and left chambers and allows unfiltered blood to pass through." One of Duilcinea's picks (helpful links to migraine research and new migraine treatments)
Using meditation to manage migraine pain (Michigan Headache & Neurological Institute)
Biofeedback: A High-Tech Weapon Against Migraines by Sue Russell (HealthyMagination 7-18-11)
Relieve Migraine Headache examines the role of the essential amino acid DL-phenylalanine (DLPA) in raising endorphin levels to combat chronic pain
MIGRAINE, BOOKS ABOUT
Breaking the Headache Cycle: A Proven Program for Treating and Preventing Recurring Headaches by Ian Livingston and Donna Novak
Living Well with Migraine Disease and Headaches: What Your Doctor Doesn't Tell You...That You Need to Know by Teri Robert
The Migraine Brain: Your Breakthrough Guide to Fewer Headaches, Better Health a book by Carolyn Bernstein and Elaine McArdle
Migraine Expressions: A Creative Journey Through Life With Migraine by Betsy Baxter Blondin
Validate Your Pain! Exposing the Chronic Pain Cover-Up by Allan Chino and Corinne Dille Davis
Migraine Treatment, Prevention in Black Women. Pam oliver talks with Farai Chideya (NPR, 2-28-08) about what causes painful headaches and what can be done to help. African Americans tend to report higher levels of headache pain but are less likely to get treatment.
What's Triggering Your Migraine? (Allison Aubrey, Morning Edition, NPR 4-27-06)
Q & A: Your Questions on Migraine (Vikki Valentine, NPR, with David Buchholz, co-author with Stephen Reich of Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain. It's allergy season and your head is pounding, what do you take? Tylenol Sinus, Advil or Imitrex? And what's a vegan with migraine to do?
The Woman's Migraine Toolkit: Managing Your Headaches from Puberty to Menopause by Dawn A.Marcus and Philip A. Bain

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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)
Wired for Habit (Elizabeth Dougherty, McGovern Institute for Brain Research, R&D, 8-19-15) "New research from Massachusetts Institute of Technology (MIT) shows that habit formation, at least in primates, is driven by neurons that represent the cost of a habit, as well as the reward....The findings, which appear in Neuron, could also provide insights into neuropsychiatric disorders that involve problems with repetitive behavior, such as Parkinson’s disease, Huntington’s disease, obsessive-compulsive disorder, Tourette syndrome and autism spectrum disorder."
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Multiple sclerosis (MS)
Multiple Sclerosis In-Depth Report (New York Times)
Multiple Sclerosis (MS) Health Center Slideshow: A Visual Guide to Multiple Sclerosis. (Web MD)
What is MS? (National Multiple Sclerosis Foundation)
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!
MS symptoms directory and news archive (Web MD)
Treatment of MS (Health Central)
29 Things Only Someone with MS Would Understand (Doug Ankerman, cartoon humor, Livestrong, 4-25-14)

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)
Patient Voices: Parkinson's Disease (NY Times) How does Parkinson’s disease affect the body? The mind? How does having a progressive disease affect families? Listen to the stories of seven men and women with Parkinson's disease. (Join the discussion.)
NeuroTalk support groups
C-Span Q&A with Michael Kinsley (4-12-16) about living with Parkinson’s disease (of interest, the part where he describes his "pacemaker for the brain."
Unlocking Parkinson’s Disease (Jon Palfreman interviewed on Science Friday, NPR, 9-18-15) 'In his book Brain Storms, he describes having Parkinson’s as “going on vacation in another country and having to drive on the ‘wrong’ side of the road.” Palfreman describes his own journey with the disease and discusses new treatments for Parkinson’s patients.' He also discusses Essential Tremor. See excerpt from chapter, "From Shaking Palsy to Parkinson's: Defining a Neurodegenerative Disease."
Brain Storms: The Race to Unlock the Mysteries of Parkinson's Disease by Jon Palfreman. PW: "...part scientific investigation, part medical detective story, and part memoir, and it opens wide a window into the world of Parkinson's."
A Life Shaken: My Encounter with Parkinson's Disease by Joel Havemann
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), Non-Motor Symptoms, the Aware in Care Kit, Diagnosis, Treatment, and Caregiving.
How special walking stick helps Parkinson sufferers (CNN, 5-22-16)
Parkinson’s causes his body to freeze up. Only one thing -- boxing -- gets him moving again. (Dan Kiefer, WaPo, 5-9-16) A decade ago, Scott Newman, an Indiana prosecutor and early-onset Parkinsonian, took up boxing and found it improved his agility and daily functioning. He eventually founded Rock Steady Boxing, a program for Parkinson’s patients that now operates in 89 sites around the country...
This glove could make eating easier for those with Parkinson’s disease (Matt McFarland, WaPo, 2-18-16) GyroGear thinks it has a solution for patients suffering from Parkinson’s disease or essential tremor. The start-up has created a glove that steadies a person’s hand, making it easier to complete everyday tasks such as eating.
10 Things Your Doctor Won't Tell You About Parkinson's Disease (Cathleen Doheny, Everyday Health, 4-26-16) Patients living with Parkinson's disease share what they wish they'd known when they were diagnosed.
Parkinson's Disease on the Rise? (Pauline Anderson, Medscape, 6-23-16) A new study shows that the incidence of parkinsonism and Parkinson's disease (PD) increased between 1976 and 2005, more than doubling in older men during this period. Age-adjusted incidence rates of parkinsonism were stable for women during this 30-year time frame, but increased for men from 38.8 to 56.0 cases per 100,000 person-years. The increase in incidence rates was greater for men 70 years or older. They defined parkinsonism as the presence of at least two of four cardinal signs: rest tremor, bradykinesia, rigidity, and impaired postural reflexes.
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.
Parkinson’s Disease and Parkinson’s Dementia (HelpGuide.org)
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"
Wired for Habit (Elizabeth Dougherty, McGovern Institute for Brain Research, R&D, 8-19-15) "New research from Massachusetts Institute of Technology (MIT) shows that habit formation, at least in primates, is driven by neurons that represent the cost of a habit, as well as the reward....The findings, which appear in Neuron, could also provide insights into neuropsychiatric disorders that involve problems with repetitive behavior, such as Parkinson’s disease, Huntington’s disease, obsessive-compulsive disorder, Tourette syndrome and autism spectrum disorder."
Navigating Life with Parkinson Disease by Sotirios Parashos, Rose Wichmann, and Todd Melby
Parkinson's Treatment: 10 Secrets to a Happier Life by Michael S. Okun, MD, author of 10 Breakthrough Therapies for Parkinson's Disease
Top 10 recommendations for PWPs and Care Partners For PWPs (an excellent resource page: Parkinson's resources from the patient's perspective). Shaky Paws Grandpa (Kirk Hall)
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)

Post-Traumatic Stress Disorder
See ...

Psoriasis

Questions and Answers About Psoriasis (National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Psoriasis is a chronic (long-lasting) skin disease of scaling and inflammation that affects greater than 3.1 percent of the U.S. population, or more than 6.7 million adults. Although the disease occurs in all age groups, it primarily affects adults. It appears about equally in males and females.
Psoriasis occurs when skin cells quickly rise from their origin below the surface of the skin and pile up on the surface before they have a chance to mature. Usually this movement (also called turnover) takes about a month, but in psoriasis it may occur in only a few days.
Psoriasis (Mayo Clinic) Psoriasis is a common skin condition that changes the life cycle of skin cells. Psoriasis causes cells to build up rapidly on the surface of the skin. The extra skin cells form thick, silvery scales and itchy, dry, red patches that are sometimes painful. The primary goal of treatment is to stop the skin cells from growing so quickly. While there isn't a cure, psoriasis treatments may offer significant relief. Lifestyle measures, such as using a nonprescription cortisone cream and exposing your skin to small amounts of natural sunlight, also may improve your psoriasis symptoms. Click on additional headers to get past first page.
National Psoriasis Foundation (800-723-9166)
Phase 3 Trials of Ixekizumab in Moderate-to-Severe Plaque Psoriasis (New England Journal of Medicine, 7-28-16, @​ http:/​/​www.nejm.org/​doi/​full/​10.1056/​NEJMoa1512711). Two phase 3 trials (UNCOVER-2 and UNCOVER-3) showed that at 12 weeks of treatment, ixekizumab, a monoclonal antibody against interleukin-17A, was superior to placebo and etanercept in the treatment of moderate-to-severe psoriasis.
Psoriasis treatment may improve cardiovascular symptoms, researcher reports (Healio, 7-28-16)
Why Does Psoriasis Increase Risk for Obesity, Heart Disease? (Beth Orenstein, Advance Online, National Psoriasis Foundation, 5-6-15) "Doctors have long suspected that those with psoriasis and psoriatic arthritis, both inflammatory conditions, are more susceptible to a number of related conditions, including obesity, heart disease and diabetes. Doctors can't say whether it's the psoriasis that causes the related conditions, also known as comorbidities, or whether it's the other way around. But new research adds to the belief that those with psoriasis are at an increased risk of developing other inflammatory conditions, even those with mild psoriasis." An inflammatory process may be common to them all.
The Heart-Psoriasis Connection: What You Need to Know (Erica Roth and Kathryn Watson, HealthLine, 2-24-16) Psoriasis is an autoimmune disease that inflames areas of skin, causing discomfort, itching, and raised skin lesions. People with any type of psoriasis have a risk of heart attack that is almost three times greater than people without psoriasis. Although psoriasis can mean an increased risk of heart problems, there are plenty of ways to strengthen your heart through diet, exercise, and stress reduction.
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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

"Suspect sepsis. Save lives." ~Sepsis Alliance
"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."
Sepsis is a medical emergency, CDC says. It can be stopped if caught in time. (Arlene Karidis, WaPo, 8-23-16) Symptoms include high fever and chills, rapid heart rate, pale or discolored skin, shortness of breath, confused or disoriented, swelling, extreme pain -- "the worst I've ever felt." The most common illnesses leading to sepsis include pneumonia and infections of the urinary tract, skin and gut, the CDC said in its report. Sepsis can ravage tissue; it causes organ dysfunction, and it kills: According to the CDC, more than 258,000 Americans die of the condition annually, more than the number of deaths from heart attack.

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."
Sepsis and Cancer (Sepsis Alliance) "Sometimes called blood poisoning, sepsis is the body's often deadly response to infection or injury. Sepsis kills and disables millions and requires early suspicion and rapid treatment for survival." Google the phrase for more on this subject.
Life After Sepsis Fact Sheet (CDC)
Sepsis Leaves Long Legacy on Brain and Body (Crystal Phend, MedPage Today, 10-26-10) "An episode of sepsis boosted the odds of acquiring moderate to severe cognitive impairment 3.3-fold, whereas other types of hospitalizations had no effect, Theodore J. Iwashyna, MD, PhD, of the University of Michigan, in Ann Arbor, and colleagues found...."It would be reasonable to start doing delirium prevention, doing delirium treatment, and doing early mobility," said another expert. "[These] may be even more important than we thought." ..."Reasons for the long-term effects after sepsis might include ICU-acquired weakness thought to be caused by muscle and nerve injury from inflammation and ischemia, as well as by prolonged immobilization and corticosteroid and neuromuscular blockers commonly used in sepsis treatment."
Sepsis Questions and Answers (CDC)
Sepsis Fact Sheet (National Institute of General Medical Sciences)
Surviving Sepsis Campaign (Society of Critical Care Medicine)
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."
The Politics of Sepsis: From President Garfield to Governor Cuomo (Lisa Suennen, Venture Valkyrie, 1-23-13)' Governor Cuomo has noted that “experts have been calling for action on sepsis for more than a decade, and that simple screening tools used by Kaiser Permanente in California, and Intermountain Healthcare in Utah, two hospital chains, had drastically reduced sepsis mortality rates.” And yet, despite data demonstrating that evidence-based guidelines endorsed by key critical medical associations could reduce death from sepsis by up to 40%, most hospitals are not adhering to them.'
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.
She lost her hands and feet to an infection. Now she’s cooking, dancing and traveling again. (Steve Hendrix, WaPo, 11-24-15)
An Effort to Raise Awareness of Sepsis, Led by Families Touched by It (Jim Dwyer, NY Times, 9-13-14) Dr. Carl Flatley, 23-year-old daughter, Erin, went into septic shock and died after outpatient surgery in 2003, founded the Sepsis Alliance as a way to build awareness of sepsis as a medical emergency. There are simple and effective therapies for sepsis if doctors and nurses suspect sepsis before its rampage picks up speed. But although it affects more than one million people in the United States annually, half of whom die from it, sepsis until recently got little attention from public health leaders, including the Centers for Disease Control."
Causes of sepsis (NHS, UK) and treatments.
Sepsis Fact Sheet (National Institute of General Medical Sciences, or NIGMS).
Improving the Odds of Surviving Sepsis (Carolyn Beans, NIGMS, Inside Life Science, 8-18-14)
Seeking the Causes of Sepsis: Life-Threatening Bacterial Infection Remains Mysterious (Emily Carlson, NIGMS, Inside Life Science, 6-15-11)
Personal stories (some stories of survival, some tributes to the ones who didn't make it, The U.K. Sepsis Trust).
Public Health Officials Struggle To Identify Sepsis Before It Becomes Deadly (Michelle Andrews, Kaiser Health News, 8-23-16) “Early treatment is vital,” said Dr. Anthony Fiore, chief of the epidemiology research and innovations branch at the CDC’s Division of Healthcare Quality Promotion. “It’s an emergency that you need to deal with, like heart attack and stroke.” When sepsis advances to septic shock, characterized by severely low blood pressure, each hour of delay in administering antibiotics decreases the odds of survival by an average 7.6 percent, one study found. In 2013, sepsis, or septicemia as it’s sometimes called, accounted for nearly $24 billion in hospital costs, the most expensive condition treated. Up to half of people who get it die.
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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Sickle Cell: In Step Toward Genetic Fix, Scientists Pinpoint ‘Achilles Heel’ Of Sickle Cell Disease (Carey Goldberg, CommonHealth: Reform and Reality, 9-21-15) Medical scientists may find ways to use genome-editing technology to turn an "off" switch into an "on" switch. Hopes are biotech companies can begin trying gene therapy in clinical trials.

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.

Sjögren's syndrome

("SHOW-grins," for dry eyes)
Patient Voices: Sjögren’s Syndrome (NY Times). A relatively unheard of disease that is difficult to diagnose. Causing a strange constellation of symptoms, which may include dry eyes, dry mouth, joint pain, chronic fatigue or even organ inflammation. Here, five men and women speak about living with this condition.
Sjögren's Syndrome Foundation
Sjögren's Syndrome (Medline Plus)

Sleep apnea and other sleep disorders

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)
Continuous positive airway pressure, or CPAP, a treatment that uses mild air pressure to keep the airways open, often used to treat sleep apnea (NHLBI)
CPAP devices
Provent (a new device, less cumbersome than a CPAP machine)
Telemedicine May Be Boon for Treating Sleep Disorders (Salynn Boyles , Medpage Today, 6-17-16) Reimbursement uncertainty remains roadblock to wide adoption, but telemedicine could help address the shortage of providers to treat this condition.

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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Other sleep disorders

Facts About Problem Sleepiness (National Heart, Lung, and Blood Institute, NHLBI) This patient booklet identifies the signs of problem sleepiness, what could cause it, provides an overview of common sleep disorders, and suggests what can help if you think you have problem sleepiness.
Sleep Disorders (NHLBI)
What is narcolepsy? (NAR-ko-lep-se)
What is restless leg syndrome (RLS)? (NHLBI)
What are sleep deprivation and deficiency? (NHLBI)
What are sleep studies? (NHLBI)
Sleep-deprived brains alternate between normal activity and ‘power failure’ (labspaces.net)
Insomnia (NHLBI)
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Stroke Causes, prevention, rehabilitation, and recovery


Ischemic strokes occur when blood flow to the brain is blocked (usually by a blood clot) and part of the brain becomes deprived of oxygen.
Hemorrhagic strokes occur when a brain aneurysm bursts, or a weakened blood vessel in the brain leaks into the brain.
Stroke, information about (National Institute of Neurological Disorders and Stroke, or NINDS).
"Symptoms include
---Sudden numbness or weakness, especially on one side of the body
---Sudden confusion or trouble speaking or understanding speech
---Sudden trouble seeing in one or both eyes
---Sudden trouble with walking, dizziness, or loss of balance or coordination, or
---Sudden severe headache with no known cause.
Stroke warning signs and symptoms (American Stroke Association)
Patient Voices: Stroke (NY Times, 4-14-08) By temporarily severing the brain's blood supply and damaging the body's vital control centers, a stroke can change every aspect of the sufferer's life. Here, in their own words, are the stories of people coping with the aftermath of stroke.
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!
Hidden Stroke Victims: The Young (Anna Gorman, Kaiser Health News, 8-24-16) "The headaches were excruciating and wouldn’t go away. Her doctor said they were migraines. Then, one morning a few weeks later, Jamie Hancock stood up from the couch and discovered she couldn’t move the right side of her body. When she spoke, her speech was slurred." The 32-year-old was having a stroke.
Resources for Caregivers of Stroke Survivors (Very Well)

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)
Nearly All Strokes Globally Have Avoidable Element (Gloria Rothenberg,Medpage Today 6-30-16) Behaviors, metabolic factors, and air pollution found key contributors. "Globally, stroke is almost entirely caused by modifiable risk factors, with air pollution emerging as a significant contributor....Potentially modifiable behaviors -- smoking, poor diet, and physical inactivity -- contributed to 74.2% of strokes...Metabolic factors -- high systolic blood pressure, high body mass index (BMI), high fasting plasma glucose, high total cholesterol, and low glomerular filtration rate -- were attributable for 72.4% ...The five risk factors associated with the strongest impact on disability-adjusted life years in developed countries were high systolic blood pressure, high BMI, diet low in fruits, diet low in vegetables, and smoking." And stop drinking sugary drinks! See Strokes Information Center (Medpage Today)
The Best News About Stroke Prevention...Chocolate (Heidi Moawad, MD, on VeryWell, 7-27-16). Both milk chocolate and dark chocolate (both made from cocoa) provide some protection against stroke; white chocolate does not contain the same cocoa element. Nor are foods made with "chocolate flavoring" and imitation chocolate, so read the label! In the study group, the highest amount of chocolate consumed was "the equivalent of eating between 10 chocolate chips per day up to one regular size chocolate bar, or a few snack size chocolate bars per day."
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.
My Mother’s Make-Believe Boyfriend (Joyce Wadler, NY Times, 4-21-16). "My mother’s brain has been melting since she had a stroke, and now the major territories include pastrami, kittens and a man in her nursing home. Hunks of her brain are gone, and she is still trying to gaslight her daughter...What do you do when your mother spends half her time on another planet, a snowbird of dementia?" Joyce Wadler's humor (I Was Misinformed) may help carry you through. See also Dealing With Ma’s Dementia, and That Trip Out West (Wadler, NY Times, 10-6-16)

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.
After the Stroke (the poet May Sarton’s journal about recovering from a mild stroke when she is in her seventies)
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Stroke


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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Stuttering


Friends. The National Association of Young People Who Stutter. Here are some articles for parents.
StutterTalk (changing how you think about stuttering...one podcast at a time)
The Stuttering Foundation offers many resources, including Famous People Who Stutter
British Stammering Association (BSA)
Support organizations for people who stutter
Passing Twice (an informal network of gay, lesbian, bisexual, and transgender persons who stutter and their friends)
Five Myths About Stuttering (The Stuttering Foundation)
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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Tinnitus

Causes of tinnitus (Mayo Clinic). And treatments.
Neuroscientists Identify Brain Mechanism Responsible for Tinnitus, Chronic Pain (The Hearing Review, 9-23-15) A good explanation of tinnitus and of paths researchers are exploring to discover ways to treat the disorder.
New hope for people with tinnitus (Consumer Affairs)
Tinnitus support group, on Facebook
Army Tests Hearing Drug at the Rifle Range (Amy Dockser Marcus, WSJ, 8-21-15) Medicine might prevent noise-induced hearing damage, a persistent problem for soldiers repeatedly firing loud weapons. "Tinnitus, or constant ringing in the ears, and hearing loss were the most prevalent of the new service-connected disabilities for which the U.S. Department of Veterans Affairs paid compensation in fiscal 2013."
Tinnitus resources (Hearing Health Foundation)
MarkeTrak VIII: The Prevalence of Tinnitus in the United States and the Self-reported Efficacy of Various Treatments (The Hearing Review, 11-1-11)
Magnetic pulses to the brain deliver long-lasting relief for tinnitus patients (Neuroscientist News, 6-16-15)
Ringing In Your Ears? Finally, Researchers Finding New Clues About Tinnitus (Richard Knox, WBUR, CommonHealth Reform and Reality, 5-6-15) A new report’s findings suggest that tinnitus is more complicated than scientists thought.

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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
Living with Brain Injury (Brain Injury Association of America) Click on other subtopics along left side.
Traumatic Brain Injuries (ConsumerDangers.com)
Toledo-area veteran perseveres after 2004 traumatic brain injury (Viviana Hurtado, anchor, WTOL, 11-11-15) Award-winning story about Army veteran Matthew Drake, Northwest Ohio’s first service member injured in Operation Iraqi Freedom. As he was the lone survivor of an IED attack, his eleven-year road to recovery was miraculous. The story won the prestigious Edward R. Murrow Award. His mother wrote a memoir about his injury and recovery: Just As He Is Right Now: A Mother's Memoir on the Price of Freedom and the Power of Hope
Few Retired N.F.L. Players Opt Out of Proposed Concussion Settlement (Ken Belson, NY Times, 11-3-14)
Six things ‘Concussion’ the movie won’t tell you (but brain experts will) (Emma Court, MarketWatch, 1-12-16) Chronic Traumatic Encephalopathy (CTE) is a brain disease found in patients with a history of repetitive hits to the head. It is connected to concussions, but scientists don't yet know the exact nature of the relationship. Still, the functions a concussion impairs—cognition, thought, mood, balance and more—certainly make life more difficult. Years of exposure to trauma to the head do appear to correlate with a CTE diagnosis, said Dr. Jamshid Ghajar, a neurosurgery professor at Stanford School of Medicine and president of the Brain Trauma Foundation. But there is no causal relationship between the severity of a concussion or number of concussions and CTE, he said.
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)
Rehospitalization Rates: 20% for Individuals with Traumatic Brain Injuries (Brain Injury Association of America)
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.
Brain injury survivors are storytelling their way to recovery (Ben Graham, The Guardian, 6-4-15). The Who Are You Now? project has helped brain injury survivors develop their literacy and speech skills. By narrating their own experiences, brain injury survivors are tackling discrimination, developing their skills and building confidence
Who Are You Now? (Life stories of brain injury survivors)
To Love What Is: A Marriage Transformed by Alix Kates Shulman. A beautifully written memoir and the compelling story of a husband and wife facing his traumatic brain injury and her transformation into caregiver. Shulman provides clear explanations of what happens when there is traumatic brain injury (TBI), and works into the story some of the tips she picks up along the way of how to take care of herself and hang on to at least a few hours to herself during each day. This is not presented as a how-to book, but you sure do get a sense of what you have to be prepared to do, and to give up, if something like this fall from a sleeping loft leaves someone in your family handicapped. Among other things, she has to deal with her husband's loss of short-term memory, his around-the-clock emotional dependence on her, and outbursts of anger and aggression that are especially hard to deal with because he was such a gentle person. TO LOVE WHAT IS is a slim and highly readable book, one I would not hesitate to suggest or give to anyone who has to deal with TBI (or to decide how MUCH they love that person they are thinking of marrying). (From my review on Amazon.)
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.
Days of Daze: My Journey Through the World of Traumatic Brain Injury by Lois Jean Thomas. The life of a clinical social worker is disrupted when she is struck by a car on a noontime walk. She tells her story of sustaining a traumatic brain injury and her struggles to cope, physically, emotionally, and spiritually.
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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Brain tumors and aneurysms (for those of us who "watch and wait," brain tumors are a chronic condition)

Tuberculosis
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."


Managing chronic pain

Dr. John Sarno on healing lower mid-back pain, sciatica, psoas pain ' (20/​20 segment, YouTube). (Basically, "It's all in your head." -- that is, he says that's often true AFTER you have ruled out physical problems. Your brain protects you from negative emotions by referring them to your back.). Or read his book: Healing Back Pain: The Mind-Body Connection. A lot of people seem to have been helped by this book. Goodreads: " John Sarno, MD, at the NYU School of Medicine discovered in the 1970s that back pain was not coming from the things seen on the imaging, such as herniated discs, arthritis, stenosis, scoliosis, etc. Pain was coming from oxygen reduction through the autonomic nervous system due to elevated tension levels, but had been errantly linked to the "normal abnormalities" seen on MRIs and X-rays. Most physicians refused to believe his findings even though his success rate in healing the most troublesome of pain-cases was well above theirs. Dr. Sarno labeled the disorder TMS, or tension myoneural syndrome, currently being called The Mindbody Syndrome." (From a review of Hanscom's book, below).
Healthcare Hashtag Project, a free open platform for patients, caregivers, advocates, doctors and other providers that connects them to relevant conversations and communities. Thousands of patients talk about diseases weekly in "chats" on Twitter.
Giving Chronic Pain a Medical Platform of Its Own (Tara Parker-Pope, Well, NY Times, 7-18-11) What doctors don't know about chronic pain. “Having pain that is not treated is like having diabetes that’s not treated,” said Ms. Thernstrom, who suffers from spinal stenosis and a form of arthritis in the neck. “It gets worse over time.”
New Pathways to Overcome Chronic Back Pain (listen to podcast of back surgeon David Hanscom, author of Back in Control: A spine surgeon's roadmap out of chronic pain, on Show 972 of "The People's Pharmacy"). "According to Dr. David Hanscom, a leading spine surgeon, back pain can be overcome, but surgery is frequently NOT the best choice. People with chronic back pain may need to overcome their anger and anxiety and use an integrated approach to build new neural pathways that circumvent the pain. Some of the best tactics include finding a way to play as well as a way to confront anger and find forgiveness." From Goodreads: "Steve tells his compelling story of a 30-year battle with pain and ultimate healing after discovering Dr. Sarno's work. After Steve healed he began receiving hundreds of emails, calls, and letters, asking for his help--too many to respond to, so he decided to write his experience down in a book." See the Goodreads comments on book."This is a more readable book than Sarno's, says one reader.
American Academy of Pain Management
American Academy of Pain Medicine
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
Pain Association. Resources include a list of conditions characterized by pain and A Consumer Guide to Pain Medication and Treatment
Pain Relief Network (where chronic pain patients, doctors, and supporters can be heard)
Partners Again Pain (addressing untreated and undertreated pain in America)
American Pain Foundation (which has absorbed the National Pain Foundation)
National Fibryomyalgia & Chronic Pain Association (NFMCPA)
Pain management forum (MedHelp)
Patients Like Me (sorted by conditions)
American Fibromyalgia Syndrome Association (AFSA)
Hurting All Over (Jerome Groopman, New Yorker, 11-13-2000) With so many people in so much pain, how could fibromyalgia not be a disease?
Biofeedback: A High-Tech Weapon Against Migraines (Sue Russell, Healthymagination 7-18-11)
Migraine Treatment, Prevention & Relief (CR, 4-28-16) Tips on how to treat—and even prevent—this common type of pain
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)
Quality of Life Scale , a measure of function for people with pain (pdf, American Chronic Pain Association)
The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering by Melanie Thernstrom
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)
Opioids: addiction, overdose, treatment, and recovery (addiction to heroin, cocaine, crack, and other illegal and addictive painkillers--and addictive prescription drugs)
Managing ordinary (not chronic) pain

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MEMOIRS OF COPING WITH
CHRONIC, RARE, OR INVISIBLE DISEASES, INCLUDING MENTAL HEALTH PROBLEMS


• Ansay, A. Manette. Limbo: A Memoir (an undiagnosed muscle disorder cuts short her career as a concert pianist)

• Barron, Judy and Sean. There's a Boy in Here (life with autism, from both mother's and son's viewpoint)

• Bauby, Jean-Dominique. The Diving Bell and the Butterfly: A Memoir of Life in Death (immobilized by a stroke, the narrator discovers the life of the unfettered imagination)

• Beasley, Sandra. Don't Kill the Birthday Girl: Tales from an Allergic Life. Beasley's allergies —severe and lifelong—include dairy, egg, soy, beef, shrimp, pine nuts, cucumbers, cantaloupe, honeydew, mango, macadamias, pistachios, cashews, swordfish, and mustard--and that's just the food allergies. A memoir with explanations, for any family dealing with allergies.

• Benton, Elaine. A Silver Lining (Amazon Kindle). Growing up with Gaucher disease (a rare, inherited disorder), and battling Parkinson's, while remaining positive and living life to the full.

• Bernstein,Jane. Loving Rachel (about life with a blind daughter)

• Bissinger, Buzz. Father's Day: A Journey into the Mind and Heart of My Extraordinary Son. A father learns more about his adult son, a twin who, deprived of oxygen for three minutes at birth, is mentally challenged but a savant with a powerful memory.

• Black, Kathryn. In the Shadow of Polio: A Personal and Social History (a memoir of Black's childhood experience of a mother in an iron lung, wrapped in the larger story of the search for a cure)

• 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.

• Johnson, Marc and Kathleen Gallagher. One in a Billion: The Story of Nic Volker and the Dawn of Genomic Medicine The story of a young boy with a never-before-seen disease, the first human being whose life was saved by genome sequencing-- a bold step into personal genome sequencing—based on the authors’ Pulitzer Prize–winning reporting. Susan Okie's book review (WaPo 4-24-16) suggests both the compelling and complex medical story and (finally) the impact on the family of the mother's single-minded focus on saving the boy's life, including breast reduction surgery so the medical team will take the mother seriously.
• 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

• Presley, Gary. Seven Wheelchairs: A Life beyond Polio (the story of his journey from the iron lung, in 1942, to life in a wheelchair--working his way through seven of them).

• 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.
http:/​/​www.npr.org/​templates/​story/​story.php?storyId=4854875


• Walker, Lou Ann. A Loss for Words: The Story of Deafness in a Family

• Waxman, Robert and Linda. Losing Jonathan (losing a beloved child to drugs)

• Wexler, Alice. Mapping Fate: A Memoir of Family, Risk, and Genetic Research (on Huntington's Disease)

• Wilensky, Amy S. Passing for Normal (a compelling account of life with a long-delayed diagnosis of Tourette's syndrome and obsessive-compulsive disorder — and an "exploration of the larger themes of difference and the need to belong")

• Willey, Liane Holliday. Pretending to Be Normal: Living with Asperger's Syndrome (a mother's account of her own and her daughter's life with Asperger's syndrome)

• Williams, Donna. Nobody Nowhere (growing up as an autistic child, and a far different story from others listed here)

• Wilson, A.N. Iris Murdoch As I Knew Her. A literary memoir that portrays "Murdoch as novelist & thinker, not Alzheimers poster child," as one reviewer put it, by contrast with the books by Murdoch's husband, John Bayley, especially Elegy for Iris.

• Wurtzel, Elizabeth. Prozac Nation: Young and Depressed in America (atypical depression and bouts with drugs)

• Young, Joan W.. Wish by Spirit: A journey of recovery and healing from an autoimmune blood disease. Joan contended with immune (idiopathic) thrombocytopenic purpura (ITP) but this may be helpful for anyone with a platelet disorder or anyone exploring alternative therapies. Joan's recovery required a total makeover of her lifestyle and daily practices, but I've seen her dancing -- she recovered, looks great, dances beautifully (at Glen Echo, where I got to know her).


[Go Top]



COPING WITH INVISIBLE CHRONIC ILLNESSES,
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).
Invisible Illness Awareness Conference (September 2011, virtual conference, listen to on-demand episodes online)
On-Demand episodes from Invisible Illness conference (Blogtalk radio)
Invisible Disabilities Association spreads awareness about illness, pain, injury and disabilities
Overcoming Self Defeating Behaviors When You are Chronically Ill (Invisible Illnesses conference, 2008)
[Back to 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).



Sitting Is Bad for Children, Too (Gretchen Reynolds, Well, NY Times, 9-23-15) Many epidemiological studies have found associations between multiple hours of inactivity and increased risks for diabetes, obesity, heart disease, liver disease, metabolic syndrome and other conditions, including premature death. Most worrying, these risks remain elevated even if someone regularly exercises but then settles into his or her chair for the rest of the day. Uninterrupted sitting may reduce vascular function. A 2-Minute Walk May Counter the Harms of Sitting (Gretchen Reynolds, Well, NY Times, 5-13-15)

"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
http:/​/​www.hopeline.com
http:/​/​www.spanusa.org

Suicide Hotlines
1-888-649-1366
1-800-SUICIDE
1-800-784-2433

“During a crisis, the human tendency is to revert to a survival mentality and, if we’re parents, to protect our children. But raising children is not only about protection. It is also about growth for both parent and children. . . . Real life has always demanded that both parents and children tolerate uncertainty and learn to bear inevitable tensions: between attachment and separation, illusion and disillusion, stability and change, health and sickness. And the human condition demands that parents do it all against the inescapable backdrop of mortality, perceiving the whole of reality while maintaining compassion, optimism, and hope....

“A common, unrealistic parental expectation is wanting life for our children to be simple and smooth when the human condition and the core of mothering are characterized by contradiction, ambivalence, and paradox. Perhaps mothers can find comfort in knowing that perfect security and perfect mothering are neither attainable nor desirable. Children have always suffered. Mothers have never been forever.”
~ Linda Blachman, in Another Morning: Voices of Truth and Hope from Mothers with Cancer

"He began to collect vintage jazz records and in no time knew all the musicians and the groups they had played with. But this time he didn't 'display' his knowledge the way he always had before, the way, I'd read, most autistic kids did as a substitute for real conversation."
~ Judy Barron, writing about her son Sean's emergence from autism in There's a Boy in There, a fascinating account of a boy's childhood with autism, told by both mother and son

"Many people with Asperger's have an affinity for machines. Sometimes I think I can relate better to a good machine than any kind of person. I've thought about why that is, and I've come up with a few ideas. One thought is that I control the machines. We don't interact as individuals. No matter how big the machine, I am in charge. Machines don't talk ack. They are predictable. They don't trick me, and they're never mean.
"I have a lot of trouble reading other people. I am not very good at looking at people and knowing whether they like me, or they're mad, or they're just waiting for me to say something. I don't have problems like that with machines."
~ John Elder Robison, in Look Me In the Eye: My Life with Asperger's, p. 151

"In a culture which loves the idea that the body can be controlled, those who cannot control their bodies are seen (and may see themselves) as failures."
~Susan Wendell, “Toward a Feminist Theory of Disability”

"Students who struggle with illnesses that unpredictably increase and decrease in severity such as asthma, chronic fatigue syndrome, lupus, rheumatoid arthritis, or illnesses with frequent hospitalizations such as cancer or heart disease, may have found it difficult, if not impossible, to meet the requirements of a conventional college program....A chronic illness is one that typically involves waxing and waning symptoms that interfere with the student’s ability to physically engage successfully in a college program." ~ The Chronic Illness Initiative

“Although telling someone they look good is often seen as a compliment,it feels like an invalidation of the physical pain or seriousness of one’s illness and the suffering they cope with daily.”
~Lisa Copen, founder of National Invisible Chronic Illness Awareness Week,


"Within a month of signing my appointment papers to become an assistant professor of psychiatry at the University of California at Los Angeles, I was well on my way to madness. Within three months, I was manic beyond recognition. And just beginning a long, costly, personal war against medication that I would in a few years time be strongly encouraging others to take.

"My illness and my struggle against the drug that ultimately saved my life and restored my sanity had been years in the making. For as long as I can remember, I was frighteningly although often wonderfully beholden to moods. Intensely emotional as a child, mercurial as a young girl, first severely depressed as an adolescent and then unrelentingly caught up in the cycles of manic-depression by the time I began my professional life. I became both by necessity and intellectual inclination a student of moods. It has been the only way I know to understand and indeed to accept the illness I have. It has also been the only way I know to try to make a difference in the lives of others who also suffer from mental illness."
Kay R. Jamison, PhD, An Unquiet Mind: Personal Reflections on Manic-Depressive Illness "