Daily Living

Big Waves, Big Attitude

“Even though I struggle to put a hat on my head or walk up a staircase, I can still operate in 40- to 60-foot waves and provide a service that may save someone’s life.”

Ryan Levinson, 38, lives life to the fullest, and he’s not going to let a disease like facioscapulohumeral muscular dystrophy (FSH) deter him.

Texas Achiever with DMD Turns 50

January 17 was a particularly special day for Tom Mecke. It was his 50th birthday, and he had beaten a pretty long set of odds to get there.

Mecke, a San Antonio, Texas, resident all his life, has Duchenne muscular dystrophy (DMD). He and his parents got the news that he has the disease when he was 6 years old. They also were told he’d probably die before he turned 20.

Elevators and Bathrooms at Your Fingertips

A new, no-cost iPhone application is now available to help shoppers locate facilities like elevators and accessible restrooms in the country’s larger malls.

Called FastMall, the application (app) from Web developer MindSmack may prove especially helpful to wheelchair users and others who want to chart accessible pathways among a maze of retail outlets. For outside the mall, FastMall has a helpful “remember where you parked” capability.

myMDA Blazes New Trails

Attention, young adults ages 18 to 35: A new online group, Trailblazers, aims to provide you with a virtual gathering spot where you can share thoughts and ideas, challenges, resources and recipes for success.

Trailblazers is one of several dozen groups on MDA’s e-community myMDA, which connects people around the country who are coping with muscle diseases.

Breaking New Ground

On one of her first days at the University of Missouri, freshman Gabriella Garbero achieved campus-wide notoriety when her father Matt passed out in her dormitory.

He wasn’t impaired -- other than being dehydrated and not having eaten for most of the day, and having diabetes, which he found out about from that experience. The stress of helping his daughter get settled into college life probably also played a part.

Of Math and MD

Many people, upon noting the academic credentials of high school senior Lindsay Lee, might characterize her as a math whiz.

The 17-year-old, who has congenital muscular dystrophy (CMD), is quick to demur. “Oh, I don’t know if I’d say that. I just really like math … and, well … I’m pretty good at it.”

DMD Profile: The Weather Guy

Long before a freak blizzard ripped into town and left more than a foot of snow in its wake, the citizens of Crossville, Tenn., and region had been warned to prepare for a freezing onslaught.

Fully a week earlier, local meteorologist Steve Norris had taken a close look at his charts and data and determined, “Whoa! We’re in for a big one.”  A full-time radio broadcaster for Crossville radio station WIHG (“The Hog”), Norris got the word out to most of eastern Tennessee and also to a wider, multi-state area via TV stations and newspapers which routinely check his weather reports.

MLB Honors ALS Activist

The law professor and ALS activist responsible for getting Major League Baseball fired up to defeat ALS died Nov. 1. In tribute, Game 5 of the World Series, played on Nov. 2 between the New York Yankees and Philadelphia Phillies, was dedicated to Michael Goldsmith, 58, a devoted baseball fan who pushed the game he loved to fight the disease he hated.

Still Fishing: BMD Profile

Thanks to a little help from a tablecloth, a scissor jack and his wife Mary, Curt Sweely is one heck of a fisherman.

Of course, Sweely has been one of the fishing-est fishermen on East Coast lakes for decades, with a boatload of trophies and titles to show for it. The only thing that’s changed is his approach.

NIH Wants to Know

Important questions for Americans: What health care issues are important to you? Where do you get most of your health care information? If a loved one were sick with cancer or Alzheimer’s disease, where would you go for information?

The National Institutes of Health (NIH) wants to know.

A new NIH program seeks to obtain information from a wide cross-section of America that the agency hopes will help it better develop and distribute medical and scientific information to the public.

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