DMD Pathfinders Accessible Gaming Webinar

On Saturday 25th February, DMD Pathfinders launched their first webinar series on accessible gaming; this is the story about perfect teamwork, facing challenges together & learning new skills.

DMD Pathfinders (created by Dr Jon Hastie & Mark Chapman) are making monumental steps in highlighting issues relevant to adults living with DMD, as it is user-led. Finally, it’s also the right medium to spread awareness through action by sharing future possibilities to the next DMD generation.

We created the webinar using the software Webinarjam, none of us had knowledge of the software so Nick Catlin from Decipha showed us the ropes. The technology looked promising allowing viewer interactivity as well as informative for us through chat, polls & offers.Our accessible gaming video content was brilliant, everybody had useful input: Me, Jon & Saul Catlin made videos focusing on different areas in gaming. Saul made a great piece showcasing the young DMD talent with ambitions in game development, studying a software development BTEC at college & providing useful tips in starting down the road of game design. Saul was such an inspiration showcasing how positive the future will be for DMD Pathfinders with people like Saul.

Jon & I collaborated using my old Blog post on accessible Gaming as the presentation I designed on accessible gaming however I’m not a PC Gamer like Jon so he added PC gaming information. We both created videos explaining our varying experiences with gaming and solutions we found. It was also a chance to spread awareness that there is help out there from charities like ReMap, Special Effect & AbleGamers if you are facing restrictions on gaming due to mobility issues. DMD Pathfinders is set up for this exact reason to share useful information, which at times seems hidden, gaming accessibility should be widely known as a majority of gamers have a disability.screenshot_2017-02-27-16-48-26_bibmgt

I won’t lie to you that having to film a section was daunting for me, I was worried about my breathing difficulties after speaking for long stretches or running out of useful things to say. However, I somehow managed t0 speak for 15mins, mind you with long pauses between breaths due to speaking wearing my ventilator.

Jon edited  & split the videos into smaller chunks. He did a brilliant job in such short notice. Daniel Baker was our lovely tech director, the important guy in background, battling with the technical quirks. The Webinarjam test on Friday was stressful as we had various of tech issues, mostly audio/webcam issues, crashes & login problems. (I think I unknowingly logged into Daniel’s Webinarjam account). The software seemed unintuitive, fiddly when needing to alter settings and had an unreliable video connection.screenshot_2017-02-27-16-56-53_q5kmj1

The Saturday LIVE webinar started brilliantly with no technical probs, it was running smoothly but halfway my audio failed, I couldn’t hear Jon so I was talking over him/repeating myself. Luckily, the viewers didn’t hear me only the team did because a scheduled video was playing. The viewers in the chat were great, we loved the support & appreciated the questions asked in the Live Q&A session afterwards. Funnily, because I couldn’t hear Jon, we both answered the question about if the Xbox Kinect could recognize facial movements. Mark was our moral support & webinar chat director.

We are going to contact Webinarjam’s technical support to see if they can address the issues we faced with video content stopping during our presentation (making pre-loaded webinars unreliable) otherwise we may have to ask for a refund.

In conclusion, DMD Pathfinders had an amazing Accessible Gaming Webinarjam pilot and our first real chance to see how we work together as a team on such a big project & we proved we had excellent teamwork. DMD Pathfinders have great leaders in Jon & Mark, thank you guys for your leadership.

ONWARDS and UPWARDS!

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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.

The only Constant in life is Change

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.

riddelldvbpI’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.

fullsizeoutput_fdbUnforeseeable 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!