From the New York Times:

When Chris Pendergast was diagnosed with amyotrophic lateral sclerosis (Lou Gehrig’s disease) in 1993, he wasn’t expected to live long. Now, almost fifteen years later, he’s using his long-term survivorship to draw attention to the need for more ALS research and immediate access to Medicare and Social Security benefits. His foundation, Ride for Life, has raised $3 million for research and patient services.

… Mr. Pendergast has no illusions about the Darwinian worlds he’s competing in — one for personal survival, the other for attention in the bazaar of marches and runs and walks for one cure or another. Most of the efforts, he said, are organized and supported by the people who have survived a disease. But 90 percent of people with A.L.S. are gone in five years. Almost no one lives as long as he has. So, he figures, if there’s a divine logic to his ability to survive, maybe this is it.

He’d like to see the disability community coordinate its efforts. “I don’t think different disease communities should be scrapping for pieces of the pie, ” he says. “I would like to have a bigger pie.”

PatientsLikeMe, an Internet start-up, creates information-rich communities for the chronically ill. Is it the next step forward in medical science — or just a MySpace for the afflicted?

Writing in the New York Times Magazine, Thomas Goetz describes what happens when patients band together on the Internet to share their most intimate medical information, from symptoms to drugs and dosages.

… PatientsLikeMe is a tool that allows patients to manage their disease with a sophistication and precision that would have been unimaginable just a decade ago. The 7,000 members of PatientsLikeMe, in other words, are beta testers — they may be the vanguard of how we all will care and treat our résumé of chronic diseases. They’re not typical patients, in the sense of waiting for advice from a doctor. They are, rather, co-practitioners treating their conditions and guiding their care, with possibly profound implications.

… Of course, turning patients’ experiences into usable data raises a host of questions for medicine. When patients take the reins of their own treatment, what role do doctors play? What’s to keep patients from misinterpreting the streams of data and finding false hope — and what’s stopping them from embarking on unproven and even risky treatments or dosages? And what happens if the real-world information at PatientsLikeMe contradicts the clinically proved protocols of medical science?

From the New York Daily News and MSNBC, news about a book by Richard M. Cohen, bestselling author whose earlier memoir ‘Blindsided’ gave readers an insight into his life with multiple sclerosis and colon cancer.

Ninety million Americans live with chronic illness. In his latest effort, Cohen helps readers explore their world by documenting the journeys of five people who have adapted to illness. Among the illnesses represented are ALS (also known as Lou Gehrig’s disease), non-Hodgkin’s lymphoma, muscular dystrophy and bipolar disorder.

His message: these “citizens of sickness” are resilient, valuable people who are determined to live life on their own terms. In bearing witness to their lives, Cohen challenges public ignorance and offers lessons of courage and hope.

Married to “Today” show co-anchor Meredith Vieira, Cohen had trouble talking to his wife and their three kids about his anguish. In his autobiography, “Blindsided: Lifting a Life Above Illness: A Reluctant Memoir,” he disclosed all the details.

“I really was reluctant because I fought tooth and nail against revealing myself,” Cohen admits. “I didn’t want to tell my own story because the thought of actually laying open my life was unthinkable. (more…)

By Gretchen Berland, M.D., in the New England Journal of Medicine. Access to this article is free.

Berland is a documentary-filmmaker-turned-internist as well as an assistant professor of medicine at Yale University School of Medicine. She recently completed a lengthy project that culminated in the film “Rolling,” documenting the lives of three people in wheelchairs in Los Angeles. Berland gave her subjects videocameras with which to explore the activities, thoughts and perspectives of their daily lives, and compiled more than 200 hours of material into a single narrative.

An excerpt from her account of the project:

The participants filmed events related to their passions: basketball, camping, disability rights, music …

Moments of extraordinary frustration were also recorded, a scene captured by [Vicki] Elman being a striking example. After 20 years of living with multiple sclerosis, Elman required a power wheelchair. One afternoon, her regular public-transportation service picked her up from an event, and during the ride home, her wheelchair stalled inside the van. (more…)

– Alzheimer’s advocates counter misconceptions among minority communities. From the Boston Globe. The campaign is part of an effort to address cultural barriers to dementia care among African-Americans, Asian-Americans, Latinos and other groups.

“Driving the initiatives is concern that increasing numbers of African-Americans and Latinos are at high risk of Alzheimer’s and other types of dementia because they have cardiovascular disease or diabetes, and because they are reaching their 60s, 70s and 80s, when dementia typically strikes.”

– Tips for planning vacations for people with disabilities. From the Dallas Morning News.

– Harvard business school student with ALS (Lou Gehrig’s disease) uses B-school techniques to encourage research into drug treatments.� From the Boston Globe.