From USA Today:

Stephen White, the best-selling author behind 16 psychological thrillers, says in an interview that he lives with multiple sclerosis (MS), like one of the key characters in many of his novels.

… though White has never kept the fact that he has MS a secret, until now he has been reluctant to talk publicly about it and how it affects his life and informs his writing.

Of Lauren Crowder, his character with MS, White says:

“I had a very specific reason for giving her MS in the first story. It had to do with giving her a reason to be a reluctant participant in a romance,” he says. Crowder doesn’t appear in the latest novel, much of which takes place in New Haven, Conn.

If he had it to do again, White says he wouldn’t have burdened one of his continuing characters with a chronic illness. “It really limits. In a long series, you want to have as many degrees of freedom for your characters as possible. Lauren’s degrees of freedom are somewhat limited. She can’t suddenly get better or not have this illness.”

However, White says he has aimed to make her experience with MS realistic to help readers understand the condition, and a large portion of his mail is related to her and MS.

The New York Times‘ Lesley Alderman offers on-the-job strategies for people with chronic illness, who must learn to manage not just their illness but workplace policies that can affect job security. Rules governing time off are murky, Alderman says.

Among tips she offers:

• Inform your employer about your condition.
• Seek reasonable accommodations.
• Learn your company’s personnel policies, and federal laws and regulations.
• Explore working part-time or taking a different job if needed.

From MTV News, [UK] Guardian:

This year’s “American Idol” TV show now has at least two contestants with disabilities. David Osmond, who has multiple sclerosis, has been voted on to the next round. Earlier, the judges selected Scott MacIntyre, a singer with a visual impairment.

David Osmond’s father is Alan Osmond, who rose to fame with the original Osmond singers and also has multiple sclerosis.

See also:  Idol Playback: Ryan Attempts to High-Five Blind Contestant — People magazine

“American Idol” clip here.

(Video from davidosmond.com)

By Patricia E. Bauer

Just when you think you’ve heard it all, people come up with some new ones. Questions, that is — about Sarah Palin’s baby son, Trig Paxson Van Palin, who has Down syndrome (at left with sister Piper at the Republican National Convention). Here are answers to some common questions.

1)  Down syndrome — that’s really bad, right? Doesn’t that mean he’s sickly and won’t live very long?

First of all, let’s think about this baby as just that — a baby. People with Down syndrome vary widely, and each has a unique personality, temperament, and combination of strengths and challenges. We haven’t been told anything about Trig’s health status yet, except that he has Down syndrome.

In general, people with Down syndrome have some degree of mild to moderate intellectual disability and have a higher risk for a variety of health problems, particularly heart trouble. At the same time their life expectancies have increased dramatically, from an average of about 9 years in the 1920s, to something reaching into the 60s today. (See my post here on Bert Holbrook Jr. of Waseca County, Minnesota, who just celebrated his 80th birthday.)

As recently as the 1960s, people didn’t know that people with Down syndrome were capable of learning, and sent them to institutions where they were most often neglected or abused. Most of the very negative images about them, and the worst health outcomes, date from that time.

With the improvements in education and health care of the last few decades, it’s not unreasonable to expect that children with Down syndrome born today can enjoy full, rich lives, form satisfying relationships, and gain skills that will allow them to work and make positive contributions to their families and communities.

2) If Palin opposes abortion rights, as she says, why did she have an amnio? Wasn’t that a waste of money?

Many women who oppose abortion nonetheless have prenatal testing so they can get information that may be useful in planning for their baby’s delivery and care. Gov. Palin has said she was glad to receive Trig’s diagnosis before he was born so she could learn about Down syndrome and come to terms with her son’s disability before she met him.

3) Ninety percent of American women who get a prenatal diagnosis of Down syndrome get an abortion. Doesn’t that prove people with Down syndrome have terrible lives?

Actually, no. People with Down syndrome are valued, valuable and contributing members of happy families. Their families report deep attachment to their children, and are saddened by those abortion statistics. Family members attribute the numbers to widespread public ignorance about people with Down syndrome; doctors who lack current information and aren’t well-trained to deliver prenatal diagnoses; lingering fears and stigma left over from the days when these people were institutionalized under horrible conditions; and unrealistic desires for the “perfect child.” See also this post.

(more…)

From the Baltimore Sun:

Public health experts say the nation needs to set up national health registries, similar to those now in place for cancer, to track trends and focus research on a long list of conditions. Among them are Alzheimer’s disease, autism, multiple sclerosis, asthma and heart disease.

Registries for birth defects are in place in only 15 states, according to the CDC. Cancer registries contain information on the age, race, gender, county of residence, diagnosis, treatment and outcome for patients across the country.

Scientists say the cancer registries have been valuable in learning the causes and trends of cancer, and in developing prevention and treatment strategies. “We also can have those benefits for other diseases,” said Thomas A. Burke, an epidemiologist and professor in the Johns Hopkins University’s Bloomberg School of Public Health. “It takes political will, and it does take funding, but there’s an awful lot of interest there.”

From CNN, Los Angeles Times, Reuters:

Actress Terri Garr, the Oscar-nominated star of movies like “Tootsie,” “Young Frankenstein” and “Close Encounters of the Third Kind,” says she was “shunned” by many people after her diagnosis with multiple sclerosis almost ten years ago. Then, two years ago, she had a brain aneurysm.

Now Garr’s back on the big screen with a performance in the just-released “Expired,” in which she plays twins. She’s got a lot to say about her life as an actress with disabilities.

“When you hear the word ‘disabled,’ people immediately think about people who can’t walk or talk or do everything that people take for granted,” Garr said in a recent interview. “Now, I take nothing for granted. But I find the real disability is people who can’t find joy in life and are bitter.”

… Garr wrote about her experiences with MS in the 2005 book “Speedbumps” (her original title for it was “Does This Wheelchair Make Me Look Fat?”) and worked tirelessly for the National MS Society, touring the country and talking about living with MS.

(Los Angeles Times photo)

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.