Getting real: being dis-abled

2016-08-07 11.09.42

Finding the accessible paths at the Royal Botanic Garden, Sydney

It was when my partner suggested that I get real about being disabled…reminding me that kind people actually got up out of the disabled seats on the train for me…that I had to consider how to move around. It was clear that when I became dystonic, moving like I had cerebral palsy in a wide and dropsy gait pattern, that this was very alarming for people around me as they thought I was going to fall. But I didn’t fall. I needed to be able to move safely for short distances when I was wobbly.

So I found a new fabulous general practitioner as I had just moved into the area. She kindly took my history an filled in the RTA application for a disability permit for the car. I was only able to ask for a temporary permit. I can’t accept yet that this Functional Movement Disorder might not go away. Ever. I checked with the GP that I was safe to drive, that my neurological condition met the medical standards for licensing. Phew! I was still safe to drive.

Was this really happening to me…..?

2016-08-04 16.42.35

Enjoying a rainbow at the blustery beach

A wheelchair is understandable for the audience. Walking like I’m drunk is not. Fatigue is another issue if we’re out for more than a few hours and my walking is worst when I’m tired. But there’s no way I’m getting stuck in a wheelchair….

We went to hire a wheelchair to test it out for a couple of weeks. The result: definitely easier for others moving around me, totally disempowering and cumbersome for me!


2016-08-04 16.38.51 HDR

Going for a ‘walk’ at the beach


So I tried walking with my walking poles that I had used hiking. These seem to work well and provide enough support for me when my legs started to wobble and collapse as I walked. Folks seems to think I looked strange enough to get out of my way in busy city streets. So I just walk with sticks now, practising visualising normal movement and going slowly.

Please smile as you pass by…. I do know how I look when I walk!



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