DISCLAIMER: All views expressed are entirely my own & separate from DMD Pathfinders
Change. Could we call it the chance for ‘outside the box’ thinking, an experiment on growth or only chaos?
Change is constant; the only difference is in whether we judge it as positive or negative. I agree that current worldwide society trends may negatively affect the future. Disabled people are struggling to live full independent lives or even not having access to a disabled spot on a bus. Negative events are conducive to change by bringing the world together, challenging tyrants or corruption wherever it falls. We all need to voice our concerns and simply support each other, however cliché it sounds.
That is why pioneering user-led charities like DMD Pathfinders are conducive to changing attitudes around disability. Showcasing the valuable first-hand knowledge adults with DMD have in order to spread awareness that will improve lives for the next generation of adults with DMD.
Okay, enough with society as a whole. Let me highlight Jon Hastie’s Vlog chronicling his epic ‘mile a day’ fundraising effort for DMD Pathfinders a user-led charity run by some impressive adults with Duchenne. During his Day 5 journey video, he mentioned having to change his current (but now discontinued) ventilator mask to a new supposedly ‘better’ mask.
I’m not speaking about Darth Vader masks!
Ventilator masks take a few months of adjustment time until you get used to it or move on. Little details are very important, mask straps causing pressure sores, limited sightline, needing a tight seal around nose and importantly do your glasses fit on comfortably. So having to change masks is never better but a few months of hell until you’ve adjusted. Standardised masks do not fit every head shape, size or skin type so it usually needs adapting with extra straps made of stretchy cotton.
Unforeseeable change occurs in every day life but the way you deal with it is important. In my opinion, I’ve learnt this lesson much faster because of Duchenne. Duchenne is inherently all about perceivably negative physical changes but that doesn’t limit positive mental changes.
Onwards & Upwards!