Dedicated MDA family caregivers share best practices for supporting loved ones and themselves
“If I was down, who was going to take care of him?”
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...
Two couples affected by Becker muscular dystrophy discuss the challenges and joys of making a relationship work when one partner has a chronic disease
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...
A family caregiver struggles to accept what is — and what will never be no matter how hard she wills it
Mom (top, 2011) climbed to the top of a White Sands, N.M., dune with me just two years before her muscles were too weak to support her own breath.
Receiving care without giving back can be difficult. Feeling the love makes it easier.
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.
Advice from a home health care agency owner
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:
Quest shares lessons from parents who have successfully helped their children with muscle diseases grow into self-reliant adults
When Vance Taylor was a boy, he didn’t know any adult he could look to and say, “There’s somebody like me.”
His mother, Morena Noyes, recalls the first time she took Vance and his sister Kathy — both of whom have limb-girdle muscular dystrophy — to MDA summer camp.
“We were still in the parking lot, in our Astro van,” Noyes says. “Vance looked, and then he turned to his sister and said, ‘Kathy,...