Daily Living

MDA's 2014 Clinical Conference on neuromuscular disease brings together health professionals from across the country and focuses on improving lives through excellence in care

posted on March 7, 2014 - 3:01pm
"Optimizing Care: Improving Lives Through Clinical Excellence" is the theme of the 2014 MDA Clinical Conference, which takes place March 16-19 at the Hyatt Regency in Chicago. A secondary theme — "I am progress" — also will be in evidence, referencing the crucial role that MDA clinic team members nationwide have in providing expert medical care in neuromuscular disease and identifying new...

A strong support system makes it possible for one gifted student with Duchenne muscular dystrophy to pursue his dreams

posted on January 9, 2014 - 9:31am
Quest Winter 2014
Raymond Walter isn’t your typical teenager. Having graduated from high school at age 14 and from college at 18, he’s already knee-deep in his doctoral studies in mathematics and physics as a Distinguished Doctoral Fellow and a National Science Foundation Graduate Research Fellow at the University of Arkansas at age 19. 

My crutches were a source of anxiety about not looking ‘normal,’ until I learned to let go by just holding on to them

posted on January 9, 2014 - 9:27am
Quest Winter 2014
When I fell several months ago and couldn’t get up under my own power, I knew it was time to let go. Or rather, time to finally grab a hold. Christopher Anselmo For the first 26 years of my life, I could walk on my own with confidence. But on that day, as I propped myself up using the bumper of a car and a mailbox, I realized that was no longer the case. 

Taking more than care

posted on January 9, 2014 - 9:23am
Quest Winter 2014
Without the help of my paid caregivers, I can’t get out of bed. I put my life in their hands every day, and that’s why it was such a slap in the face when one of my aides stole my work laptop. It’s been well-documented that individuals with disabilities are victimized by crime, including burglary/theft, at much higher rates than the rest of the population. In fact, we’re often targeted...

The author’s weight loss surgery led her to start an exercise program that provided her with more muscle tone — and a lot of fun

posted on January 9, 2014 - 9:21am
Quest Winter 2014
To exercise or not to exercise? I can almost hear the people reading this article screaming, “NOT!” Truthfully, until about a year ago, I would have been screaming NOT the loudest, the longest and with absolutely no hesitation. Author Danise Armstrong riding her tricycle. Living with CMT

Becca Niebrugge runs to honor her uncle, who fought a brave battle against ALS

posted on January 9, 2014 - 9:05am
Quest Winter 2014
Becca Niebrugge has long been inspired by her uncle Mike Mitchell, who, like Becca’s dad, was an avid long-distance runner. But it was the painful experience of watching ALS (amyotrophic lateral sclerosis) abruptly strip her uncle of his ability to run, before ultimately claiming his life in April 2013, that finally compelled Becca to tackle a full marathon herself.

Two couples affected by Becker muscular dystrophy discuss the challenges and joys of making a relationship work when one partner has a chronic disease

posted on November 19, 2013 - 11:05am
Quest Vol. 20, No. 4
After nine years of courtship, my partner Richard and I are discussing The Future. Children, marriage and home ownership are now notching out deeper spaces in our daily dialogue. Like many couples, we’re both scared of The Future. We’re concerned we won’t be fully equipped for what may come — those ripples that may make life a little more difficult. We’ve already experienced hardships that we’ve...
posted on October 3, 2013 - 9:23am
Quest Vol. 20, No. 4
Individuals affected by neuromuscular disease are at increased risk of serious and possibly life-threatening complications from the flu, so it's important that everyone stays informed and takes steps to protect themselves and their families. Be sure to visit MDA's Flu Season Resource Center to learn more. In addition to receiving a flu vaccine, there are many other ways to protect yourself and...