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Archive for the ‘ALS’ Category

Books: ‘Strong at the Broken Places’

Saturday, January 5th, 2008

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…)

The view from the other side: Patients, doctors and the power of a camera

Wednesday, December 19th, 2007

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…)

More Sunday stories

Sunday, July 29th, 2007

– 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.

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More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

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