Daily Living

Helpful tips to minimize end-of-year stress and maximize the spirit of the season

posted on October 8, 2015 - 9:37am
As the autumn leaves start to fall, the holiday season is upon us. And between the hustle and bustle of decorating, shopping, food preparation and social gatherings, the holidays can be a source of increased stress. Anyone can feel overwhelmed this festive time of year, but for people living with neuromuscular diseases, managing the additional activities and expenses is crucial to maintaining...

Advice from a home health care agency owner

posted on January 7, 2013 - 9:23am
Quest Vol. 20, No. 1
In the Fall 2012 issue of Quest, we ran an article about the benefits of hiring in-home care, written by Amy Nelson, the owner of a large home health agency in the Midwest (Getting Care: There’s No Place Like Home). Among the responses we received was this one, which we forwarded to Amy Nelson for comment:
posted on January 7, 2013 - 9:21am
Quest Vol. 20, No. 1
My husband is a romantic and I an a realist. The first time we planned a trip abroad, he suggested that I add Paris to the itinerary. I swiftly nixed his request. The thought of orchestrating wheelchair-accessible trips to two countries seemed daunting. But, ignoring the detour to France was my one regret after visiting England. The next time we traveled abroad, I researched our options and...

The game's afoot!

posted on January 7, 2013 - 9:19am
Quest Vol. 20, No. 1
More than 33 million people in the United States are gamers with disabilities. That number grows every year. Once considered frivolous, video games have become an important part of modern culture. Decades ago, no one could have foreseen the video game craze — or the impact it would have on the lives of players with disabilities.

Beth and Dan Gore have a most extraordinary family. Over the past dozen years, the Brandon, Fla., couple has adopted six children with disabilities, the youngest being Manny, a 3-year-old with congenital muscular dystrophy.

posted on January 7, 2013 - 9:15am
Quest Vol. 20, No. 1
Meet Manny. He's one of six children with disabilities adopted by Beth and Dan Gore of Brandon, Fla. Three-year-old Manny — who has merosin-deficient congenital muscular dystrophy and has been in and out of the hospital due to gastrointestinal, respiratory and cardiac issues — is the subject of Beth’s fifth published children’s book, Mighty Manny.

Two long-distance pen pals with CMT finally meet after six years — and find that the differences and similarities in their symptoms enhances their friendship

posted on January 7, 2013 - 9:12am
Quest Vol. 20, No. 1
Nurtured by letter, by phone, by email, by text messaging, the deep-rooted friendship that has developed over six years between Linda and me is undeniable!
posted on January 7, 2013 - 9:09am
Quest Vol. 20, No. 1
Note: Click on photos to enlarge. IPC ‘human backpack’ strap

A woman with mitochondrial myopathy mounted a successful Facebook effort to assist a vent-dependent friend stranded with no power after Hurricane Sandy

posted on November 21, 2012 - 5:00am
“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.”