Today I had a small audience while going though my daily routine. Who were these people? you ask no I wasn't being stalked by the paparazzi I was being observe by an intrepid reporter named Chelsea and her sidekick an over 6 foot tall photographer named Brian. As I mentioned before I was being interviewed and observed for a newspaper article about me, my mom, and my life with the devastating disease known as Duchenne muscular dystrophy. This in-depth article will cover every aspect of my daily routine and how I deal with this disease on a day-to-day basis it also covers what things are like from my mom's perspective as my almost full-time caregiver.they got to see every aspect of my complicated routine which starts by rolling me being rolled onto my back when I wake up, positioning me to watch TV, administering my morning meds, feeding me two cans of nutrition via G-tube (one can by gravityand one by feeding pump), after that comes a breathing treatment using an IPV machine which gives me percussions and moisture into my lungs to loosen up And mobilize secretions, after that 20 minute treatment it's time for a bed Bath, after the bed Bath it's time for trach and G-tube care where we clean around both of the stoma's or holes, after that it's time to get me dress which takes about 15 minutes, after I get dressed my mom moves my ventilator from my bedside to my wheelchair, now it's time for a transfer which involves using a hoyer lift or Crane to lift and maneuver me to my wheelchair, once I am safe and secure in my wheelchair I simply have too shave, brush my teeth, and call my hair now I'm all set for the day. While the reporter was observing my routine and the photographer was snapping pictures I was asked some questions about life on the ventilator and how having a life-threatening disease has changed my outlook on life. unfortunately the reporter got called to another story and had to leave halfway through my routine. Fortunately the reporter stayed to snap pictures which in my opinion can say more than words ever can. This guy must've snapped over 600 pictures while he was here he even followed me to an appointment with my Department of rehabilitation counselor.for those of you who don't know little barware rehab is the state run organization that is helping me find employment. after the meeting with my counselor the photographer Brian conducted a mini interview with a tape recorder to use with the online article. He let us talk about what we wanted to and didn't ask us any questions. My mom and I decided to talk about how this disease has impacted our lives and how it changed our outlook, life.
I admit it was very weird to have someone watching my every move for a day but it was more than worth since this article will give outsiders an idea of what living with a disability is all about. I would do it again in a heartbeat.