Muscular Dystrophy News Columns

September 20, 2021September 20, 2021

Avoiding the Folly of Comparison

Muscular Dystrophy News Columns

Being in a power wheelchair, getting fatigued more easily than the average person, and walking with a waddle-like gait are a few bullet points on a long list of Duchenne ... Read more

September 17, 2021September 17, 2021

My Sons Decide Whether to Attend the Homecoming Dance

Muscular Dystrophy News Columns

It’s homecoming week here in Nebraska. Our local high school has its homecoming football game today, and the dance is tomorrow. I love homecoming. It’s a time of fun and ... Read more

September 15, 2021September 15, 2021

Question Everything: How to Ask the Right Questions

Muscular Dystrophy News Columns

As I’ve described in my previous columns, knowledge is power. I feel very fortunate to have received my diagnosis of limb-girdle muscular dystrophy when I did. I was beginning physical ... Read more

September 10, 2021September 10, 2021

When Mom Is Tired, Caregiving Is Hard

COVID-19 Columns, Muscular Dystrophy News Columns

I saw a meme today that said, “I need a day between every day to recover from the day before and prepare for the upcoming day.” I could not have ... Read more

September 3, 2021September 3, 2021

What I’ve Learned About Anxiety and Duchenne Muscular Dystrophy

Muscular Dystrophy News Columns

Our family has encountered many challenges in our journey with Duchenne muscular dystrophy, and there will be more to come. If I were to ask the question, “What is the ... Read more

September 1, 2021September 1, 2021

The Joy of Getting to Interview People for a Living

Muscular Dystrophy News Columns

I started writing for my high school newspaper, The Bolt, when I was 17. Now 24, I’m telling the stories of people who make an impact in their rare disease ... Read more

August 27, 2021August 27, 2021

Parenting in a Duchenne Family Is Hard, But What About the Siblings?

Muscular Dystrophy News Columns

It’s tempting to label the siblings of those who have Duchenne muscular dystrophy as the “unaffected siblings.” But I can never seem to get those words out of my mouth. ... Read more

August 23, 2021August 23, 2021

Why Discipline Is an Important Value to Learn With Duchenne

Muscular Dystrophy News Columns

When I was a toddler, my parents would sit me up in my highchair in front of a big bowl of broccoli. It was around dinner time, while they were ... Read more

August 20, 2021August 20, 2021

My Son Is Living a Fuller Life Than We Ever Imagined

Muscular Dystrophy News Columns

My oldest son with Duchenne muscular dystrophy, Max, starts his sophomore year in high school this week. He will be halfway through his high school education by the end of ... Read more

August 18, 2021August 18, 2021

What Do You Know? Exploring the Questions We Should Ask

Muscular Dystrophy News Columns

I wanted to expand on my last column by delving into the types of questions we should ask when presented with a new ailment, such as muscular dystrophy. I’d like ... Read more

August 16, 2021August 16, 2021

Why It’s Important to Give Yourself Grace With Duchenne

Muscular Dystrophy News Columns

I came down with a nasty cold two weeks ago, and even though I was sick, felt terrible, and knew I needed to rest as much as possible because I ... Read more

August 13, 2021August 13, 2021

Why It’s Important to Be Honest About Daily Struggles

Muscular Dystrophy News Columns

I’m a glass-half-full kind of girl. It’s usually not difficult for me to look on the bright side of life. Recently, I had one of those days where everything felt ... Read more

August 13, 2021August 13, 2021

6 Ideas for Back-to-School Success

Muscular Dystrophy News Columns

My kids return to school next week. As always, there is so much to do to get ready. In addition to back-to-school shopping and open house, I have to ensure ... Read more

August 6, 2021August 6, 2021

This Duchenne Muscular Dystrophy Family Lives Life to Its Fullest

Muscular Dystrophy News Columns

A hostess I am not! Planning a child’s birthday party or hosting a team meal is the extent of my party planning skills. I am usually introverted and quiet, and ... Read more

August 4, 2021August 4, 2021

To Care Is to Share (Knowledge)

Muscular Dystrophy News Columns

This week, I wanted to visit the reason I started writing this column. However, to describe that rationale, I need to revisit the moments soon after I received my diagnosis. ... Read more