Writing in NPR’s ‘This I Believe’ section, Penn State University English Professor Gregg Rogers explores his reaction to his daughter’s prenatal diagnosis of Down syndrome. Rogers and his wife were overwhelmed by fear and anxiety at the thought of raising a child with a disability, he says, but were transformed when their daughter Genevieve burst into their lives.

I now believe Genevieve is here for everyone. I believe Genevieve is taking over the world, one heart at a time — beginning with mine. I believe that what was once our perceived damnation has now become our unexpected salvation.

… On my right wrist, I wear a simple silver chain with three little beads on it. I used to say the three beads signified the third chromosome that results in trisomy 21, Down syndrome. Now when I look at those beads, they simply remind me that I don’t ever know as much as I think I do, but I’m always capable of more than I think I am.

Rogers and his wife Lucy host a website for other families in their area who have children with Down syndrome.

From Scientific American, the New York Times:

Sergey Brin, a co-founder of Google, says he has a genetic mutation that increases his likelihood of getting Parkinson’s disease, a condition which is shared by his mother and her aunt.

Brin discovered the genetic mutation in a test from 23andMe, his wife’s gene-screening company. He estimated his risk of getting the disease at somewhere between 20 percent and 80 percent.

Forbes magazine recently estimated Brin’s personal fortune at $15.9 billion. He said he may help provide more money for research into the disease.

(Photo from Scientific American)

From the Wall Street Journal, New York Times, Boston Globe:

When Joe Biden suggested that opposition to stem-cell research signals less dedication to people with disabilities, he was highlighting an issue that has been energizing the GOP’s social conservatives.

The Democratic vice-presidential nominee’s comments were apparently aimed at his Republican rival, Gov. Sarah Palin.

Politics aside, stem-cell research appears to hold little promise of mitigating Down syndrome or helping those with the condition. People with Down syndrome are born with an extra chromosome, and “that is something that does not seem to be easily addressed with stem cells,” said Brian Skotko, whose research and medical practice at Children’s Hospital in Boston focuses on Down syndrome.

The greater potential for stem-cell technologies is as a source of replacement cells and tissues for the treatment of Parkinson’s and Alzheimer’s disease, spinal-cord injury, strokes, burns, heart disease and arthritis, according to the National Institutes of Health stem-cell Web site.

An Obama spokesman said the Democrats’ support for embryonic stem cell research could provide “real hope” to families dealing with disabilities.

Sen. Obama’s plan to help Americans with disabilities includes increasing education and work opportunities, combating discrimination and supporting independent, community-based living.

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.

(more…)

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.