Backstage Pass: Duchenne Blogger

Welcome to a behind-the-scenes look at the difficulties of blogging or vlogging when you have Duchenne. Thanks to DMD Pathfinders, Muscle Owl & Limitless Travel for pushing me to reach my potential and more.

I’ve previously written  (Click Here) about the various accessibility tools I use when using my computer: a combination of an on-screen keyboard and dictation software help me type.

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Okay this will sound ridiculously obvious but a brain is essential when writing interesting blogs, however using it is closely linked to my energy levels & respiratory function. This means that I have limited time (between 12-5PM) to be 100% productive for writing or research, as I get easily tired.

I recognise that my best ideas and coherent thinking occur when I use my CPAP ventilator, getting rid of the carbon dioxide in my bloodstream completely refreshes my mind. Reason #2 why my ventilator is useful is when I start dictating because speaking for a long time is fatiguing. I could not live without dictation software but I find it difficult speaking extensively however the ventilator solves that problem. Previous versions of dictation software never could recognise my voice when I wore my ventilator because I sounded like two different people.

A strange problem occasionally occurs when I try to type my ideas down physically type sometimes I completely forget what point I was making. I think it is due to the energy expended specifically to move my fingers taking precedence over short-term memory. Or it could be that I’m getting older?

My recent Vlog was an interesting experiment as I thought I’d never be able to speak for about five minutes. I realised that I’ve only been out of practice; I just need to relax, speak slowly & learn when to take breaths.

Accessing my iPhone whilst using my computer used to be impossible until I bought the switch control and phone holder. Being able to access them at the same time it enables me to still feel connected to society. I use my iPhone as an Email, Messenger, WhatsApp alert that I answer through apps on the computer, which is a real time saver.

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You may be wondering why I sound more intelligent in the written word but I find it difficult to correctly articulate the (amazing? terrible?) ideas in my mind verbally. In the future, I’ll be able to conquer this difficulty.

This process goes into writing my blogs:


  • Research on the topic

  • Pick out relevant information from research to make a point
  • Bullet point similar ideas
  • Create a paragraph framework
  • Write every paragraph
  • Check reading Flow & Edit
  • Proof read
  • Edit & Add images
  • Finish

I’m going to end by sharing my blogging secret: Make sure your blog has Flow.

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