Dedicated MDA family caregivers share best practices for supporting loved ones and themselves

posted on October 30, 2014 - 9:19am
“If I was down, who was going to take care of him?” 

Receiving care without giving back can be difficult. Feeling the love makes it easier.

posted on October 3, 2013 - 9:13am
Quest Vol. 20, No. 4
Rick Raker For the entire day today, and perhaps throughout the weekend or longer if I can subdue my natural (or is it learned) character, I vow that I will accept all of the kindness, generosity, love and care given to me on this day and every day forward without guilt or a feeling of obligation.

Caregiving is more than physical care; it’s opening the world to your loved one

posted on October 1, 2012 - 9:30am
QUEST Vol. 19, No. 4
“What do you want to eat for dinner?” “I don’t know. What do we have?” This very common question and response is undoubtedly heard in many households on a daily basis. Whoever does the shopping and cooking has a pretty good idea what’s in the kitchen cabinets but, otherwise, each person generally goes and stares into the cabinets or refrigerator searching for a reply. Sometimes you’ll even catch...

Survey confirms importance of family caregivers to adults with muscle disease

posted on October 1, 2011 - 10:37am
QUEST Vol. 18, No. 4
In the recent National Transitions Survey conducted by MDA of our young adult and adult communities, 40 percent of respondents said their daily physical care assistance was provided by family caregivers; 41 percent indicated the majority of their transportation needs are met by a parent, spouse or family caregiver; and 26 percent included family financial support among their primary sources of...
posted on October 1, 2011 - 9:20am
QUEST Vol. 18, No. 4
Although it’s been a month since the close of the 2011 Telethon, the glow still lingers. The brand-new, six-hour, prime-time event was a huge success, thanks to the dedication and hard work of thousands of MDA supporters across the country. The faster pace of the shorter show — and the caliber of celebrity talent it showcased — were a joy to watch. Our dedicated MDA sponsors were superb and the...

A co-op model of care for adult children

posted on December 31, 2009 - 1:00am
QUEST Vol. 17, No. 1
In the 1980s, our worlds changed forever, when our separate families each received the devastating news that our children had Duchenne muscular dystrophy. At the time of the diagnosis, we were told our boys probably would live into their mid-teens, or possibly early 20s. Well, here we are — it’s 2010 and our boys are still here. Jason (Adele’s son), Patrick and David range in age from 24 to 30....

A caring touch can work wonders

posted on July 1, 2009 - 3:46pm
QUEST Vol. 16, No. 3
I guess I’d give anything to get physical affection,” says Carol*, a former gymnast who lives in Nevada. She has had slowly progressive ALS (amyotrophic lateral sclerosis) over roughly two decades, but early in the disease her husband and caregiver became distant — “figured I’d die in a few years,” she says.

Caring for your child starts with a healthy, happy you

posted on July 1, 2008 - 2:30pm
QUEST Vol. 15, No. 4
All parents make sacrifices in caring for their children, and it’s widely acknowledged that parenting is a full-time job. But parents of children with muscular dystrophy or other neuromuscular diseases know that their job is fulltime and then some. And although this job carries great joy, it also carries a higher-than-average risk of anxiety, depression and exhaustion — commonly called burnout.