In the ’50s, disabled children often disappeared into state institutions. Now, one family seeks its lost son.

Richard West, in blue shirt, is reunited with family. Brother Jeff is third from left; parents Tom and Betty are at right.

By Clare Ansberry in the Wall Street Journal, an extended feature on a couple who re-established contact with their son almost 50 years after committing him to a state institution at the recommendation of their family doctor.

Richard West, then 3 and diagnosed as an “idiot,” was housed in an institution far from his Oregon home and then relocated. Parents Tom and Betty West were not told where he was being sent, and state officials turned down their subsequent requests for information on grounds of privacy.

Four decades went by before his brother Jeff found Richard again, living in a group home. The search was inspired and assisted by Jeff Daly, whose search for his sister was chronicled in the documentary “Where’s Molly.” The family went to visit Richard and found him to be healthy and content, with a job and a girlfriend.

The Wests belong to a generation of parents who decades ago relinquished their disabled children, usually at the urging of physicians or other authorities. From the 1930s into the 1960s, tens of thousands of these children entered state facilities, which offered services that local communities lacked. Many never saw their families again.

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From CNN:

Poses are modified for people with limited range of motion or balance issues. Instructors say regular yoga can increase joint mobility. People with multiple sclerosis, Parkinson’s disease, stroke and arthritis are mentioned.

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 Times, a discussion among people with chronic illness about how much information to give their employers about their medical condition. Richard M. Cohen, author of “Strong at the Broken Places,” says he didn’t tell his employer about his multiple sclerosis because he was afraid he would be considered unemployable.

Others disclose their diagnoses right away. Gayle Backstrom, author of “I’d Rather Be Working,” advises people to keep their conditions to themselves as long as possible, just to be on the safe side.

The Americans with Disabilities Act prohibits an employer from dismissing or failing to hire a chronically-ill employee on the basis of that disability “if they are able to do the job with reasonable accommodation,” Backstrom said. But in many cases, “reasonable” and “able” and even “job” all become open to interpretation.

From the [Milwaukee] Journal-Sentinel:

William Barnewitz, principal French horn player for the Milwaukee Symphony Orchestra, wants to be identified for who he is, not what he’s got. His recently released CD, “Long Road Home,” includes works by Bach, Brahms, Mozart and Schubert. Proceeds go to the Wisconsin Parkinson Association. Colleagues say his musical performance ability is still going strong.

McCartney look-alike performs for, encourages fellow Parkinson’s patients

From the Chicago Tribune:

Mike Oltersdorf is a Paul McCartney look-alike who was diagnosed with Parkinson’s disease three years ago.

Oltersdorf’s presentations to Parkinson’s support groups — using Beatles lyrics and a phrase he plucked from a McDonald’s placemat: “Do something worth remembering” — are meant to encourage fellow Parkinson’s sufferers to reach out to others and to continue doing what they love.

“This is about expanding possibilities,” said the West Dundee man who works as a telemarketer for a machine tool company. “I like to tell people I look a bit like Paul McCartney and I shake like Michael J. Fox.”

Cover story by Daniel Bergner in the New York Times Magazine: (login required)

Cover headline: Booth Gardner is a 71-year-old former governor of Washington State running one last campaign: To let people — including someday people like him, with Parkinson’s or other debilitating nonterminal diseases — take their own lives. The next assisted suicide could be even more morally fraught.

His son is among those fighting him every step of the way.