Don’t let this diagnosis limit you

When one path ended, a new one opened up

by Nelson Dronet, Sulphur, Louisiana

I would like to take a moment to share my story in the hope that it reaches at least one person and helps him or her understand that a diagnosis of FSHD or any other neuromuscular disease can be transcended.

Growing up, I knew something was slightly off, but my symptoms were not enough to concern doctors. They always told my parents that I grew too fast, and my muscles had to catch up to my 6’2″ frame. I graduated from high school and went to work in the chemical refineries, which led to a job in a local shipyard as a ship fitter and welder.

In my early 20s I began to notice that my dominant arm was getting weak. In 1998, after a trip to the neurologist and follow-up visit to a muscular dystrophy specialist, I was diagnosed with FSHD at 24 years old. In 2000, I had to quit working in my chosen field due to the progression of muscle weakness.

I began the fight for disability compensation, which I was finally awarded in 2001. After some soul searching, I realized that this was not the way I wanted to live. I wanted to stay as active as possible, hopefully to combat some of the progression, and my mind still worked perfectly.

I started researching what kind of jobs I could do with my physical limitations. I contacted Vocational Rehab and began the process to start college. College at age 33 was a scary thought, but I knew I wanted more than what I had. I set out on a path to earn my bachelor’s degree in psychology, followed by a master’s in psychology, with aspirations of being a counselor for individuals with disabilities.

In the final year of my undergraduate degree, I was introduced to applied behavior analysis, and I knew what I was going to do with the rest of my life. I completed graduate school and went on to begin my career as a behavior analyst, where I work with children with autism and other developmental disabilities.

I chose to share my story because I want people to understand that these disabilities do not have to limit what you do in life―only the way you must go about doing things.

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