Personal Stories

Exploring the unique dynamic — its blessings and occasional hurdles — of one sibling caring for another with neuromuscular disease

posted on October 8, 2015 - 9:51am
In a small Detroit apartment, Sam Barash, 32, lives with and cares for his 20-year-old, soon-to-be 21, sister, Angela Barash, who is living with myotonic muscular dystrophy and myasthenia gravis.

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

Becca Niebrugge runs to honor her uncle, who fought a brave battle against ALS

posted on January 9, 2014 - 9:05am
Quest Winter 2014
Becca Niebrugge has long been inspired by her uncle Mike Mitchell, who, like Becca’s dad, was an avid long-distance runner. But it was the painful experience of watching ALS (amyotrophic lateral sclerosis) abruptly strip her uncle of his ability to run, before ultimately claiming his life in April 2013, that finally compelled Becca to tackle a full marathon herself.

Two couples affected by Becker muscular dystrophy discuss the challenges and joys of making a relationship work when one partner has a chronic disease

posted on November 19, 2013 - 11:05am
Quest Vol. 20, No. 4
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...

Growing up, Morrow, who has spinal muscular atrophy, had to fight to get people to listen to him; now they pay thousands of dollars for the privilege

posted on October 3, 2013 - 9:27am
Quest Vol. 20, No. 4
Self-confessed workaholic Jon Morrow is an entrepreneur and the CEO of BoostBlogTraffic.com — a company that grossed nearly half a million dollars last year and is expected to double that amount this year. Thirty-year-old Morrow has always been a smart overachiever, graduating from high school at 16, starting three businesses before he was 18 (two game-development companies and a software company...

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
Quest Vol. 20, No. 4
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.

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.