When I talk to people about my condition the most common questions that I receive are related to confusion between other neurological disorders that symptomatically seem to present similarly, their acronym is very similar and the conditions are, generally, more familiar to more people.

Imagine a situation where the involuntary action of rising from a seated position is no longer available to you. Your resultant reliance on others for every activity involving repositioning is now essentially absolute.

This happened to me very suddenly and very recently, and it has made me think a lot about our lives and who we really are – outside of our physical beings.

Everyone loves it when the mailman arrives – sometimes more than others

There was a time when If I cried “catch me, I’m falling”, it was not because my company had induced a swoon. This isn’t a pass; it is the unfortunate effect of having LGMD. While my ambulatory skills were diminishing, getting up from the ground was one of the first abilities to disappear along with my butt, hip and thigh muscles.

Back in 2015 I’m sure a local Aussie Post delivery worker was happy to know I wasn’t trying out the damsel in distress routine to gain his attentions when he found me soaking up the rays on my friends front lawn one fine sunny day.

As a newbie to this wheelchair game, I was feeling a little reticent and self-conscious about using a beach wheelchair during our recent visit to Noosa in beautiful Queensland. It really had been ages since feeling sand and water under my feet and why else would we be at this Aussie iconic beach destination (apart from food and champagne of course, but I can get that in Melbourne)?.

We tracked the wheelchair down at a nearby hotel, and for a mere gold coin donation this rubber-wheeled jalopy was ours and I was on the pathway to salty watery freedom with a small dose of terror.

When is it time to decide that walking everywhere is no longer a viable option and using a wheelchair is?