Making memories for our young family as we live with Motor Neurone & Fabry's Disease

MyTube website

January 20th, 2017

Ok so the New Year hasn't got off to the best start:

  • A faulty wheelchair. Although now fixed
  • 2 sick children
  • A new oven as it broke
  • I got stuck in my van as the wheelchair clamp refused to let go.  RAC man, a neighbour and my carer were all brilliant
  • We got rid of our care agency and rely on 3 of our staff who are worth their weight in gold
  • Chased up numerous health issues
  • Attended 2 neurology clinics
  • Facial surgery. no jokes please
  • Other appointments too boring to mention

So the real point of the post is to tell people about a website we are part of to do with feeding tubes and motor neurone disease.

MyTubeWe attended several focus groups over the last year and did several days filming kids included. The end result is a comprehensive range of views on different kinds of feeding tubes both positive and negative.  It will be officially launched on 30th March 2017.  There are tips and instructions from professionals as well as methods found by participating suffers on how we live with this in our lives.  It is also backed by the mnda.

Throughout the journey of the site we were all valued and the whole experience was a great one. We enjoyed working with the team at optical jukebox, and one really good aspect was some of the team were techs, some film makers and medical staff so expectations were not unreal and everyone understood peoples capabilities.

most of all I enjoyed being able to give something back to the mnd community, it may not be financial support but in many ways it is far more important as in my case, I am pretty sure that had I have not had it I would be dead.

We have been asked to do a small speech as part of the launch but on my communication device. So watch this space for the video.

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