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

Yorkshire Dales & 4×4 wheelchair testing

November 18th, 2016

I thought I would start by giving a brief situation report on my current health status.

  • Mobility – can stand for 20 seconds with assistance,  2-3 small steps with assistance, unable to role or sit up in bed without assistance, can move arms to shoulder height just, maintain to drive with adapted vehicle.
  • Personal care – unable to perform a effective shower, can brush teeth with an electric brush however I can’t turn it on, at the risk of stabbing my gums with a manual one.
  • Dressing – can’t do anything
  • Eating – can eat two meals a day but need to be fed, drink lots of liquid mainly energy drink and pineapple juice, regardless i still suffer with a dry throat. Maintaining my weight and not currently using my feeding tube.
  • Voice – hanging on in there, pushing forward with my voice banking in Edinburgh and hope for a result in the next couple of months.
  • Mentally – I am very positive and generally a very happy chappy with a lot to live for. As this post hopefully shows.
  • Breathing – dropped 1% on lung capacity to 56%, still not using my breathing machine despite been advised to.  I do however use my cough assist daily and find it very helpful.
  • I have now got a new grid pad which works via my eyes and find this amazing and easy to use , in fact I wrote this blog post using it and my eyes.

This post is about our trip to the Yorkshire dales. It is probably our favourite place and where we got married just over 6 years ago. We like to go back every year but for our last 2 anniversaries we have been rather busy. I managed to book a sneaky weekend away without the girls and this worked out well with the new 4×4 wheelchair or so I thought. It hadn’t arrived so the company lent us the demonstration chair. Our chair is due to arrive next week. The video below tells the story of our weekend away ,although it doesn’t say how much we missed our gorgeous girls.

Hope you enjoy the video and the image at the end of the video is the graphic on the new 4×4 wheelchair.

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