living with

A look at symptoms, diagnosis, treatments and current MDA-supported research into this complex autoimmune disorder

posted on June 15, 2015 - 1:01pm
In recognition of June being National Myasthenia Gravis Awareness Month, MDA is examining the disease from several perspectives. This article offers an overview of signs, symptoms, diagnosis and treatments for myasthenia gravis (MG), as well as information on drugs that people with MG should avoid.

Individuals with ALS and their families find unwavering support from MDA

posted on April 21, 2015 - 9:21am
Quest Spring 2015
Like all people living with amyotrophic lateral sclerosis (ALS), Joan Sucher, 65, a mother of three adult children in Ballwin, Mo., was devastated when she received her diagnosis. “My life collapsed,” Sucher shares in an email interview with Quest. “We were inconsolable. I had been healthy and active all my life. I ran regularly and finished nine half marathons after age 48. And I had no family...

Researchers at the University of Michigan are conducting an anonymous, online survey to probe patients' impressions of the impact of their neuromuscular conditions

posted on May 1, 2014 - 10:22am
Update May 21, 2014: According to investigator Sindhu Ramchandren, 922 people had responded to this survey as of May 19, 2014. The study was closed to new participants at 5 p.m. EDT that day. At the investigator's request, the link to the online survey has been removed. Results will be announced when they become available...

Meet Reagan Imhoff, MDA's 2014 National Goodwill Ambassador

posted on April 1, 2014 - 9:09am
Quest Spring 2014
Most people in the MDA community will recognize 8-year-old Reagan Imhoff right away from her unforgettable butterfly-themed dance performance at the 2012 MDA Show of Strength Telethon.

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