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    • #16248
      Leah Leilani
      Keymaster

      Did you have adult onset of Muscular Dystrophy? If so, what job did you have before you had symptoms of MD? When you first started noticing symptoms, how did they effect your work and was your boss accommodating to your frequent sick days, progressive weakness and constant doctor visits?

    • #16298
      Mark Hopkins
      Participant

      Leah,

      I had an adult late in life onset of FSHD. I am a Mechanical Engineer and was able to fully function in my career until I began to notice obvious signs of  headaches, muscle pain, poor posture, and fatigue. I knew something was wrong and it was a scary process of doctors to finally get my diagnosis. I was shocked at the news and my family was devastated since I have always been an active and very physically fit individual. My life had changed in a big way when my Doctor sat me and my wife down for the news.

      I am still able to work in my profession but on a limited basis. Fortunately my manager has been very supportive but does not understand the complexities of the disease. I have to take frequent breaks to mainly rest my lower back and stretch my shoulders. Being an employee under ADA guidelines scares employers. So, I am thinking of taking early retirement because my stamina is quickly diminishing.

    • #16304
      Leah Leilani
      Keymaster

      Mark, that’s good to hear that your boss is lenient towards your medical needs. It is too common that bosses are harsh and unaccommodating when it comes to disability. I’m sure your job takes a toll on your back muscles. What do you do to help those muscles? Maybe a back brace would help or a Theracane to loosen the tension and knots? If I’ve been hunched over for a while these things can help as well as doing a few stretches to realign my back.

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