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 and more curious, I finally came across those numbers, and they scared me. I…
Columns
On May 1, I became eligible for Medicare. This is one of those milestones in life. I was able to access this benefit a few years early because of my muscular dystrophy. I am now on Social Security Disability Insurance (SSDI). The way it works is that after…
Positivity is a characteristic that I naturally possess. I seldom struggle to find the bright side of situations. Although this attribute has saved me innumerous times from acquiring a negative disposition, I have not been completely unscathed by depression and anxiety. My mental illness began early…
When I started my Twitch channel in February, I wasn’t sure what to expect. I became quite familiar with the video game streaming platform through journalism, and finally worked up the courage to start. In the four months since then, I’ve learned about starting a small business, branding, design,…
On May 21, the world celebrated its ninth Global Accessibility Awareness Day, but accessibility awareness hasn’t yet risen to its deserved level of interest. The awareness day website shares a great picture of this initiative’s potential scale: there are about a billion people with visual, hearing, motor, or cognitive…
The muscular dystrophy world is ever-evolving. I began to have symptoms of muscle loss and weakness in 2006. Science had not yet discovered my form of the illness, limb-girdle muscular dystrophy subtype 2L (LGMD2L). My physician, a member of the Muscular Dystrophy Association, told me they would find…
Joy is one of the best tools we have to combat the progressive loss of our physical abilities. It’s an emotion that helps us triumph over our negative feelings. I wouldn’t be where I am today if I didn’t live a life of joy. What exactly is joy? The emotion…
I’ve never considered myself to be insecure about my disability. My use of a mobility aid has never dulled my social butterfly persona, except on a few occasions when I’ve communed with other people with disabilities and had to face the reality of my own disease. …
Author’s note: The COVID-19 crisis has already lasted several months. The reality is that we don’t know how this will go. But as a community, my opinion is that we need to be ready. We need to be knowledgeable. This column will focus on some work we have done to…
Netflix’s new documentary “Crip Camp” transports viewers to the peak era of peace-preaching hippies and civil rights activists. But amid these revolutions, another minority group struggled to find belonging: the disability community. To further their cause, Camp Jened’s hippie staff dedicated themselves to treating people with disabilities…
Recent Posts
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- I have new criteria for when my sons participate in DMD clinical trials
- New gene therapy for OPMD shows lasting success in small US trial
- How art fosters a sense of belonging in my life with Duchenne