Muscular Dystrophy News Columns

September 21, 2020September 21, 2020

The Value of Having Friends With the Same Disease

Muscular Dystrophy News Columns

Over the last couple of years, I’ve had opportunities to meet and befriend more adults with Duchenne muscular dystrophy. Whether we’ve found one another through CureDuchenne events or a common ... Read more

September 14, 2020September 15, 2020

Overcoming the Idea of Being a Burden

Muscular Dystrophy News Columns

As I’ve started relying more on people for things I used to do on my own, it’s become easier to ask for help without feeling like a burden. This toxic ... Read more

August 25, 2020August 26, 2020

The Battle Against Ableism Is Tiring, but I Won’t Give Up

COVID-19 Columns, Muscular Dystrophy News Columns

A few unfortunate circumstances recently have left me mentally exhausted by the endless recurrence of ableism. It feels as though ableism lurks around every corner, waiting for the opportune moment ... Read more

August 24, 2020August 24, 2020

Why It’s Important to Be Still Amid the World’s Chaos

Muscular Dystrophy News Columns

The world can be overwhelming thanks to the deadly coronavirus pandemic, especially for someone dealing with muscular dystrophy. On top of the daily struggles — lack of mobility, physical exhaustion, ... Read more

August 11, 2020August 12, 2020

I’m Sleeping Comfortably Now, Thanks to a New Mattress

Muscular Dystrophy News Columns

Most mitochondrial myopathy patients rely on sleep as therapy for our disease. Yes, rest can be effective at regenerating lost energy, but there’s nothing comparable to a restful night’s sleep ... Read more

August 10, 2020August 10, 2020

Losing My Ability to Walk Won’t Stop Me

Muscular Dystrophy News Columns

When I was younger, I couldn’t imagine losing my ability to get up from the ground, run, or play soccer. Now I can’t imagine losing my ability to walk. At ... Read more

August 4, 2020August 4, 2020

The Angels Who’ve Profoundly Affected My Life

Muscular Dystrophy News Columns

Living with a disability often means I’m exposed to people’s true colors. This can be both positive and negative. My disease has familiarized me with the cold shoulders of family ... Read more

July 30, 2020July 30, 2020

A Day on the Hill: Using Our Voices to Lobby Lawmakers

Muscular Dystrophy News Columns

Columnist’s Note: Dear reader, this will be my final column at Muscular Dystrophy News. The past 15 months have been wonderful, but I have decided to take time away from ... Read more

July 20, 2020July 20, 2020

A Good Sense of Humor Makes my Duchenne Diagnosis Easier

Muscular Dystrophy News Columns

I like to think I’m pretty funny, at least that is until I work up the courage to say something in a conversation. A lot of my humor has to ... Read more

July 14, 2020July 14, 2020

Being Independent Within My Capabilities

Muscular Dystrophy News Columns

I often associate independence with adulthood and coming-of-age. The liberation of a teenager learning to drive a car or a student bidding farewell to their childhood home as they are ... Read more

July 6, 2020July 6, 2020

Don’t Feel Bad About Calling Me ‘Inspiring’

Muscular Dystrophy News Columns

In the disabled community, many people discuss the negative implications of being called “inspiring.” Some have said it’s objectifying, reduces our humanness, or congratulates us just for being disabled.  I ... Read more

June 25, 2020June 26, 2020

Looking Backward but Living Life Forward With MD

Muscular Dystrophy News Columns

“Life can only be understood backwards; but it must be lived forwards,” said philosopher Søren Kierkegaard. He came up with an existential masterpiece. In a dozen words, Kierkegaard captured what ... Read more

June 23, 2020June 23, 2020

Dating in the Era of Coronavirus

Muscular Dystrophy News Columns

It is undeniable that the coronavirus pandemic has affected many aspects of life. Along with establishing new norms for work, school, and social interaction, the pandemic has forced romantic relationships ... Read more

June 22, 2020June 22, 2020

Creativity Allows Me to Surpass Any Physical Limits

Muscular Dystrophy News Columns

For a long time, I didn’t think journalism was a creative endeavor. I viewed the craft from an analytical perspective. After all, I was just recounting my firsthand experience publishing ... Read more

June 15, 2020June 15, 2020

Duchenne Has Forced Me to Reflect on My Own Mortality

Muscular Dystrophy News Columns

My parents tried to shield me as long as they could from data that revealed the average life expectancy of patients with Duchenne muscular dystrophy (DMD). Once I grew older ... Read more