Parents with an MD

A family caregiver struggles to accept what is — and what will never be no matter how hard she wills it

posted on October 3, 2013 - 9:25am
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.

MDA’s 2011 Personal Achievement Award recipient for Montana has Dejerine-Sottas disease, helps others with disabilities

posted on October 3, 2011 - 3:53pm
When talking with Leanne Beers of Missoula, Mont., you can’t help thinking that this is one upbeat, optimistic woman. “Even though you have muscular dystrophy, or any limitation for that matter,” she says, “it doesn’t mean you can’t accomplish the goals you want. You just may have to go about it differently. There’s no reason you can’t be happy and thrive on life.”

Actor Max Adler is 'making a muscle for MDA' in honor of his late mother and grandmother with FSHD

posted on July 1, 2011 - 4:20pm
QUEST Vol. 18, No. 3
The hit TV show “Glee” launched actor Max Adler into the national spotlight as football player and bully Dave Karofsky. But it’s his late mother’s fight with facioscapulohumeral muscular dystrophy that launched him toward MDA’s Muscle Team.

Can love, courage and modern medical technology prevent muscular dystrophy from being passed on to the next generation?

posted on March 31, 2011 - 12:01pm
QUEST Vol. 18, No. 2
It was the worst Monday morning of our lives — and Mondays are universally bad. My wife, Monique, and I woke up to a snow lockdown in London. The snow had started gently enough in the evening, but now on this January morning it was a white strait jacket. We could hardly move, but we desperately needed to get to Nottingham at all costs. Our potential future children — two fertilized and rapidly...
posted on July 1, 2010 - 5:35pm
QUEST Vol. 17, No. 3
Having a baby can be the most thrilling and rewarding experience of a woman’s life, yet it also can be fraught with fear and uncertainty. This is especially true for women with neuromuscular disease. This special report takes a look at the issues that arise for expectant mothers with muscle disease and finds that, with proper care and planning, these women are usually — although not always...
posted on June 30, 2010 - 5:36pm
QUEST Vol. 17, No. 3
Erin Brady Worsham, 51Nashville, Tenn.amyotrophic lateral sclerosis (ALS) Erin Brady Worsham tried to get pregnant for six years, with no luck. She had accepted that she was never going to be a mother. Then, in a turn of fate worthy of a novel, she got pregnant the day after she received a diagnosis of amyotrophic lateral sclerosis (ALS).
posted on June 30, 2010 - 5:34pm
QUEST Vol. 17, No. 3
Aimee Chamernik, 40Grayslake, Ill.amyotrophic lateral sclerosis (ALS) Aimee Chamernik was 33 and just beginning her third pregnancy when she noticed she was having difficulty enunciating as she read to her son at bedtime. “I thought it was odd, but I chalked it up to being tired after caring for two small children all day with a third on the way,” Chamernik says.
posted on June 30, 2010 - 5:26pm
QUEST Vol. 17, No. 3
Kathy Rivera, 58Tucson, Ariz.type 2 Charcot-Marie-Tooth disease Like many people with Charcot-Marie-Tooth (CMT), Kathy Rivera didn’t realize she had a neuromuscular disease until relatively late in life. Called “clumsy” as a child, she wore special shoes to keep her feet facing forward, but didn’t receive an official diagnosis of CMT until age 36.