ALS in the spotlight: Facts and stories about the disease

Bruce Kramer at home Thursday, Feb. 6, 2014 in Hopkins. Kramer lives with ALS. Jennifer Simonson/MPR News

Bruce Kramer at home Thursday, Feb. 6, 2014 in Hopkins. Kramer lives with ALS. Jennifer Simonson/MPR News

Last week, we talked about the ALS Ice Bucket Challenge. At the time, the viral campaign had raised $30 million for the ALS Association. Now, that number is close to $80 million — and it keeps rising.

Besides raising money, the challenge was designed to raise awareness. Even critics of the challenge have to admit, it’s living up to that expectation as the disease enjoys time in the spotlight it rarely gets.

The Washington Post published a list of five myths about the disease, including the myths that ALS only affects motor activity and that it’s a disease of “old people.”

Here are some facts about ALS from the ALS Association:

  • ALS is not contagious.
  • It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually.
  • Approximately 5,600 people in the U.S. are diagnosed with ALS each year.
  • The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.
  • Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more.
  • More than half of all patients live more than three years after diagnosis.
  • About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years.
  • There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.
  • ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.
  • ALS can strike anyone.
  • The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.

If you want to learn more about what it’s like living with this disease, MPR News has a series that tells the powerful story of one man’s experience of ALS.

Bruce Kramer was dean of the School of Education at the University of St. Thomas in Minnesota. He was diagnosed with ALS in 2010. Since then, he has shared his journey with the incurable disease from time to time with MPR Morning Edition host Cathy Wurzer. Listen to their conversations here.

More regulation proposed for medical apps. But how much?

Someone displays the "Health Bracelet" app. Mandy Cheng/AFP/Getty Images

The “Health Bracelet” app, one of thousands prompting regulator scrutiny. Mandy Cheng/AFP/Getty Images

There is a smartphone app for almost everything — and that includes your health. Marketplace reports there are nearly 100,000 health apps from fitness trackers to blood glucose monitors.

The problem is, fewer than 100 of these apps have been cleared by the Food and Drug Administration. That’s about .1 percent. Some lawyers would like to see more regulation.

Nathan Cortez, a law professor at Southern Methodist University in Dallas, wrote an editorial for The New England Journal of Medicine about the risks of medical apps.

For example, a blood glucose app from drug company Sanofi was recalled because it miscalculated insulin doses.

Marketplace reports that right now the FDA categorizes apps on three levels of risk. It only has jurisdiction over the riskiest products, and does not even review all of those. Why? Cortez said it’s mainly politics, and a fear of stifling innovation.

Even some that criticize the FDA for over regulating agree.

Chuck McCoy, head of North Texas Angels Network, told Marketplace he hasn’t heard complaints from investors about too much red tape. “The FDA over regulates in many areas,” he said, “but if you are going to make clinical claims about a device, there has to be some scientific basis for those claims.”

MN State Fair + Health = Tabouli and Fruit Smoothies

Deep Fried Breakfast on a Stick at the State Fair. Tim Nelson / MPR News

Deep Fried Breakfast on a Stick at the MN State Fair. Tim Nelson / MPR News

It’s state fair season in many parts of the country, including in our Minnesota backyard. While issuing warnings about calorie and fat counts just before a trip to the fair can be self-defeating, there are healthier options out there. So, MN fair-goers, if you’re in the mood to decline the deep fried breakfast on-a-stick and waffle ice cream sandwiches, this listicle’s for you. Check out these alternative options on your way to the horse barn, grandstand or midway.

1. Tabouli salad

Where: Middle East Bakery, Holy Land Deli

2. Vegetable kabobs

Where: Minnesota Wine Country

3. Frozen grapes

Where:  Veggie Pie, Bayou Bob’s

4. Fruit pizza

Where: Veggie Pie

5. Natural fruit smoothies

Where: Moe and Joes Coffee

6. Chicken artichoke pita

Where: Mario’s

Physician Memoir Explores Unnecessary Care, Disillusionment

A newly insured patient receives a checkup on April 15, 2014. Joe Raedle/Getty Images

A newly insured patient receives a checkup on April 15, 2014. Joe Raedle/Getty Images

If you’ve ever wondered if the tests your doctor ordered were necessary, you probably aren’t alone. Sandeep Jauhar, a cardiologist at Long Island Jewish Medical Center, noticed the trend as a young doctor working in a teaching hospital. Now, Jauhur has written a widely-noted new memoir about doctors’ growing discontent with the profession, titled “Doctored: The Disillusionment of an American Physician.”

Choosing Wisely, a project of the ABIM Foundation, recently surveyed physicians in America and found the majority of physicians agreed that overuse of certain medical diagnostics and over-treatment is a serious problem. Sponsored by the Robert Wood Johnson Foundation, the survey included these findings:

  • 73 percent of physicians say the frequency of unnecessary tests and procedures is a very or somewhat serious problem.
  • 66 percent of physicians feel they have a great deal of responsibility to make sure their patients avoid unnecessary tests and procedures.
  • 53 percent of physicians say that even if they know a medical test is unnecessary, they order it if a patient insists.

Juahur recently spoke to NPR’s Terry Gross:

“American medicine is the best in the world when it comes to providing high-tech care,” he says. “If you have an esoteric disease, you want to be in the United States. God forbid you have Ebola, our academic medical centers are second to none. But if you have run-of-the-mill chronic diseases like congestive heart failure or diabetes, the system is not designed to find you the best possible care. And that’s what has to change.”

You can listen to the full interview here.

The ALS Ice Bucket Challenge & Social Media

Justin Rose of England and Brandt Snedeker of the USA take the 'ice bucket challenge' with a bit of help from their caddies Mark Fulcher and Scott Vale after a practice round prior to The Barclays at The Ridgewood Country Club on August 19, 2014 in Paramus, New Jersey. (Photo by Ross Kinnaird/Getty Images)

Justin Rose of England and Brandt Snedeker of the USA take the ‘ice bucket challenge’ with a bit of help from their caddies Mark Fulcher and Scott Vale after a practice round prior to The Barclays at The Ridgewood Country Club on August 19, 2014 in Paramus, New Jersey. Ross Kinnaird / Getty Images

You’ve seen it on Facebook, and you’ve probably been invited to take the Ice Bucket Challenge.

You haven’t escaped watching a few celebrities and friends doing it.

The latest phenomenon in social media activism — sometimes called hashtag activism or slacktivism – is sweeping the nation, but it’s also got critics.

The challenge involves getting a bucket of ice water dumped on you. You film it, and post the video to social media. Then you nominate your friends to take the challenge.

The New York Times reports that as a result donations to The ALS Association have spiked. The association has received $13.3 million in donations since July 29, compared to $1.7 million at the same time last year.

The ALS Association tells the story of one man’s influence on the bucket challenge’s viral path:

Beverly, Mass., resident Pete Frates, along with his family, helped to make the “Ice Bucket Challenge” go viral on the social sites Facebook and Twitter. Frates, 29, has lived with ALS since 2012, and he has worked with The ALS Association’s Massachusetts Chapter. A former Division 1 college athlete with Boston College Baseball, Frates tirelessly spreads awareness of Lou Gehrig’s Disease.

But now some, including Will Oremus, a writer for Slate, aren’t buying the story. He says Matt Lauer and Martha Stewart were among several celebrities who took the challenge before Pete Frates got involved. New York Magazine dissects the phenomenon as classic social media marketing. Still, the Ice Bucket Challenge is going strong, despite the backlash from Oremus and others. The New York Times reports The ALS Association has about 260,000 new donors.

 

Creating Heart Health

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Denise Leitz of New Ulm, Minn., never used to exercise. But after joining the Heart of New Ulm Project she has made it a priority to squeeze in an hour-and-a-half bike ride most days. Lorna Benson / MPR News

MPR News’ Lorna Benson profiles a heart health program in New Ulm, Minnesota that aims to reduce the number of heart attacks with targeted public health efforts to encourage weight loss, diet change, and regular exercise. The Heart of New Ulm Project is 6 years into its 10 year lifespan, and will be recognized this week with a NOVA Award from the American Hospital Association. The program is a collaboration among Allina Health, the Minneapolis Heart Institute Foundation and the community of New Ulm. Benson profiles 56 year old Denise Leitz, who has lost 60 pounds and changed her health habits significantly as a result of the program.

From the article:

The program makes sure that Leitz and others are never alone in their quest to get healthy. Three times a day she receives text messages with healthy meal ideas and exercise tips. She also finds healthy recipes regularly in her local newspaper and on a weekly cable access program called “What’s Cooking New Ulm.”

Leitz said when she eats out, it’s not as hard as it used to be to find healthy meals. Nineteen New Ulm restaurants have added healthier options to their menus or switched to using healthier ingredients since the Heart of New Ulm Project started.

Her neighbors also help, with old fashioned peer pressure.

“People care and they notice,” she said. “And sometimes it’s a little scary because they look at you like, ‘Are you going to eat that?’ And it’s like, ‘Oh you’re right. I shouldn’t be having this anyway.’”

TBT: Fiddling During Brain Surgery

Classical Minnesota Public Radio reminded us of this remarkable 2010 story about a Minnesota Orchestra musician whose essential tremor was corrected by brain surgeons at the Mayo Clinic. Violinist Roger Frisch was awake and aware during the surgery, as doctors sought to identify the precise location within his brain that was causing the neurological disorder. During the procedure they asked Frisch to play his violin to help them determine which areas of the brain to treat. Here’s Mayo Clinic’s video report:

“Beneath the Anger Is the Fear”– Robin Williams

When a high-profile suicide reaches the fever pitch of media attention, it can elevate the public conversation about mental health and prevention. It can also make us want to destroy the Internet.

Robin Williams’ suicide Monday has done both.

The Washington Post explores the impact of such high-profile suicides and concludes certain types of media attention can be dangerous for vulnerable people. Forbes explains that suicide among middle-aged people is not only not uncommon but appears to be on the rise. And the stigma of suicide may attach itself to family members who survive, according to the Harvard Health blog.

In a well-reasoned recent book titled “Stay,” poet and historian Jennifer Michael Hecht argues that suicide is not an act of harm only against the self, but against the community, survivors, and the “future self” who may one day recover from the depression or suffering of the moment.

Of all the images of Williams we’ve scanned since his death this one, taken on a cell phone as he posed with an employee of a Dairy Queen in Minnesota during his recent visit to Hazelden, made us pause longest.

And, the comic Mark Moran re-posted this very profane, adult content interview with Williams from 2010 that covers the actor’s relapse, the pressures of celebrity, and comedy.

“Beneath the anger is the fear,” he tells Moran. “What’s the fear?”

Students Create Doc on Autism & Vaccines

MedCity News takes note of a documentary produced by high school students in Carlsbad, CA to debunk claims that childhood vaccinations cause autism. The movie “Invisible Threat” has drawn the attention of several news organizations as well as people who continue to believe that vaccinations are a factor in causing autism, despite overwhelming scientific evidence to the contrary. Anti-vaccers, as the opponents of vaccine are sometimes called, accuse the students of being influenced by drug companies. Poynter.org reports the film was funded by $60,000 from the San Diego Rotary and The Price Family Foundation.

Since its release the film has received backing from a prestigious array of medical groups. Poynter lists The American Academy of Pediatrics, Mayo Clinic’s Vaccine Research Group, Vaccine Education Center at the Children’s Hospital of Philadelphia, and Johns Hopkins Medicine among several others. Watch the trailer for a preview.

WHO: Ebola Is Health Emergency

The World Health Organization is now calling the largest outbreak of Ebola in history a public health emergency.  The vast majority of the 1,700 cases of the deadly virus to date have been diagnosed in the West African countries of Liberia and Sierra Leone. The New York Times reports that WHO director general Dr. Margaret Chan, speaking at a news conference, called it “the largest, most severe, most complex outbreak in the nearly four-decade history of the disease.” News reports indicate that WHO officials chose not to call for a travel ban in afflicted countries.

USA Today offers this explainer on what Westerners should know about the highly fatal virus-spread disease. Reporting on the dramatic scene on the ground in West Africa, the Washington Post describes conditions of trauma and chaos. Forbes reports this week on the debate over new drug therapies for Ebola that received hastened approval by federal health authorities for use on medical workers evacuated to Atlanta’s Emory University Hospital. And, as NPR reports, denial is one of the factors fueling the epidemic.

Ebola Outbreak Distribution Map (updated August 6, 2014) / Centers for Disease Control and Prevention