living with

Low Body Fat Linked with Risk of Developing ALS

Anecdotal evidence has long described a positive association between being lean or underweight and developing amyotrophic lateral sclerosis (ALS). Now, results from a large-scale study conducted in Europe appear to confirm these observations, showing that individuals with more body fat have a decreased risk of developing the disease.

Walk Like a Penguin: Anti-Slip Tips for People with Muscle Disease

Winter can be a beautiful time of year — especially when you're inside under a warm blanket, drinking hot cocoa and looking out the window at the glistening white and the snow-coated branches. Unfortunately, most people have to carry out their daily lives regardless of slippery conditions.

Slipping and falling are hazards for everyone in winter weather, but for people with neuromuscular diseases, it's crucial to be extra careful around snow and ice.

Living With

Dear Friends:

In 1992, at the age of 32, I was diagnosed with inclusion-body myositis (IBM).

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MDA Webinar Discusses Spinal Bracing and Surgery in Children

A one-hour, MDA-sponsored webinar features two physicians and the parent of a child with spinal muscular atrophy (SMA) who has undergone bracing and surgery for a spinal curvature, as well as questions and answers from listeners.

How to Obtain Durable Medical Equipment Via Medicare

Durable medical equipment (DME), such as wheelchairs, walkers, portable oxygen devices and hospital beds, can be very expensive — and the process for obtaining them from Medicare can be very confusing. 

Learn about Medicare coverage of DME and get the latest information on obtaining such equipment in a webinar Tuesday, Jan. 29, from 2 to 3 p.m. Eastern time.  

“Medicare Coverage of Durable Medical Equipment” is presented by the Medicare Rights Center and costs $40 to attend. It will cover:

MDA Building ‘Transitional Freedom’ Partnerships

Like many high school seniors, Drew is busy choosing a college and preparing for the big transition from life at home to life on a college campus. Unlike his peers, Drew has Duchenne muscular dystrophy.

Help in the Hurricane: How Social Media Rescued a Man with Mitochondrial Myopathy

“As you all know, being the creative type that I am, I love do-it-yourself projects … However, I found myself in the middle of a rather unusual project, which involved a lot of creative ‘thinking outside of the box,’ and it was more than just a do-it-yourself. It was more of a ‘do it ourselves’ project. And we did it. Successfully. Here’s the story of how we helped Nick Dupree.”

Study Shows Increased Life Span in DMD in Recent Decades

Findings from a study of 516 Italian boys show a significant improvement over the last six decades in survival time in Duchenne muscular dystrophy (DMD).

Grants for In-Home Care Available from Philanthropist with LGMD

A small nonprofit organization is offering limited grants for in-home care to people with physical disabilities. The next quality-of-life grant application deadline is November 1, 2012.

Paralympian with Mitochondrial Myopathy Swims in London

Update (Oct. 16, 2012): Joe Wise placed fifth in the 400-meter freestyle at the London Paralympic Games. Watch an interview with Joe to learn more about his experiences at the Paralympics.
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