Muscular Dystrophy News Columns

June 21, 2021June 21, 2021

What to Do When You Feel Overwhelmed

COVID-19 Columns, Muscular Dystrophy News Columns

My life has been quite busy lately. Between starting my full-time job at BioNews, helping produce two Call of Duty League YouTube shows, working on other freelance journalism projects, and ... Read more

June 11, 2021June 11, 2021

Despite My Initial Fears, I Now Praise the Feeding Tube

Muscular Dystrophy News Columns

Last June, my 2-year-old son, Alfie, had his first surgery to place a feeding tube. It has now been a year since the percutaneous endoscopic gastrostomy (PEG) tube replaced the nasogastric ... Read more

June 9, 2021June 9, 2021

PACER Panic: Remembering the Awkward Days of Gym Class

Muscular Dystrophy News Columns

I stood behind my father in uncomfortable silence. The summer had come to a close, and another school year was preparing for takeoff. I didn’t want to make eye contact, because ... Read more

June 9, 2021June 9, 2021

Who Are You?: Welcome to ‘Hidden Truths’

Muscular Dystrophy News Columns

How would you respond if I asked, “Who are you?” While the question may seem simple, it is deceptively complex. A college professor of mine once asked the class this ... Read more

June 7, 2021June 7, 2021

Facing a New Series of Physical Transitions

COVID-19 Columns, Muscular Dystrophy News Columns

Transitions are a part of life. We go through puberty as teenagers and our bodies change. We move out of our parents’ place to go to college or start a ... Read more

May 28, 2021May 28, 2021

Grieving the Challenges That Lie Ahead for My Son

Muscular Dystrophy News Columns

Last week, I took my 2-year-old son, Alfie, for a walk-through at a local preschool. We are checking out all of the preschools in our area so we can find ... Read more

May 26, 2021May 26, 2021

Using Cheat Codes to Live My Best Life With Becker Muscular Dystrophy

Muscular Dystrophy News Columns

Up, up, down, down, left, right, left, right, B, A, Start. Cheat codes were a vital part of unlocking certain hidden aspects of old-school video games. Entering these sequences in ... Read more

May 24, 2021May 24, 2021

Writing About Rare Disease for a Living Is Rewarding

COVID-19 Columns, Muscular Dystrophy News Columns

On April 1, I started full time at BioNews, the publisher of Muscular Dystrophy News Today, writing feature stories about the rare disease community. Since I first started writing articles ... Read more

May 14, 2021May 14, 2021

Helping My Son Conserve Energy Is a Constant Juggling Act

Muscular Dystrophy News Columns

Growing up, I was never good at performing tricks. I couldn’t whistle, I’ve never been able to cartwheel, and I’ve always been terrible at juggling. Now, every day is the ... Read more

May 10, 2021May 10, 2021

Imagining a Life Without Duchenne Muscular Dystrophy

COVID-19 Columns, Muscular Dystrophy News Columns

I sometimes like to imagine a life in which I don’t have Duchenne muscular dystrophy, a progressive muscle-weakening disease. No boundaries would hold me in. I could travel anywhere I ... Read more

April 28, 2021April 28, 2021

After Falling, I Pick Myself Up and Bend My Armor Back Into Shape

Muscular Dystrophy News Columns

The glint of armor demands attention.  The jousting lance was slung to the side of a great black horse. The rider, shield in hand, mounted the stallion and paraded about ... Read more

April 23, 2021April 23, 2021

Why It’s So Important to Find Your People

Muscular Dystrophy News Columns

When Alfie was first diagnosed, I went searching. I needed answers. I needed to know that my little boy would be OK. I searched every website and every social media ... Read more

April 19, 2021April 19, 2021

How I’ve Managed Constipation as Someone With Duchenne

COVID-19 Columns, Muscular Dystrophy News Columns

This is the dirtiest column I have ever written because it’s about poop. And whether you love it or hate it, it’s an especially relevant topic to the Duchenne muscular ... Read more

April 5, 2021April 5, 2021

Dungeons and Dragons Helps Me Live Without Duchenne for a Moment

COVID-19 Columns, Muscular Dystrophy News Columns

Kriki Cragwalker, a redheaded dwarf from the mountain city of Jagarz Dauk, grasps her enchanted, two-handed greataxe and is circled by a host of ancient green spirits with allegiance to ... Read more

March 26, 2021March 26, 2021

What a ‘Typical’ Day Is Like for My Son, Alfie, and Me

Muscular Dystrophy News Columns

BEEP BEEP BEEP BEEP. My eyes spring open. It’s still dark. It’s not my alarm that I hear. “Wake up!” I say as I roll over and poke my husband. ... Read more