i have something called nystagmus (that’s a fancy way of saying my eyes dart around involuntarily). it’s not very pronounced so you need to consciously look for it. it manifests itself by me not seeing “very far”, my central vision being “blurry”, and my inability to read subtitles now – i use a magnifier when the fonts are “too small” as glasses don’t really help since it’s not a “lens” (the irony isn’t lost on me since that’s how my family and childhood friends refer to me) issue. my depth perception is compromised – i’ve always known intellectually that this is a likely effect but for some reason i only made the “connection” a few weeks ago. it’s more obvious to me as i played a lot of point guard in basketball and had a “decent” outside shot (i was particularly “skilled” at making free throws) – i now have trouble catching and throwing a ball.

the good thing is that i should have double vision but my brain compensated so i don’t experience this phenomenon and don’t get headaches. unfortunately when people should see two usually, i don’t based on my neurophysio tests.

balance can also be affected (that’ why PTs ask you to close your eyes to make a task “more difficult”). fortunately, all the core work they’ve asked me to do lately helps make this less of a factor.

i wonder how i’ll cope if i lose my vision entirely as i rely on a rollator frame and am claustrophobic…

i was at my weekly neurophysio appointment yesterday for first time in 2020. since it was the session of the new year, she asked if i had any goals or specific plans for this year – honestly, nothing came to mind and i hadn’t really thought about it.

she reiterated that my daily exercise routine was meant to improve my stability and balance. and that “putting it together” in a regular walk outside might be beneficial for me. i wouldn’t impose on my wife as she is tired from work and does household chores. although i exercise everyday, the last thing i want to do is go out exercise and do more of it.

so it might be more practical to arrange an NDIS-funded carer to take me for a walk. i sometimes already do this indoors in our “long” hallway at home so you might be perplexed. i’m not very confident walking alone on uneven surfaces. i was given an “assignment” before to walk around our house – case in point, i only tried this once as aside from it was slow going my walker kept getting “stuck”.

she thought walking outside may be beneficial (she was even willing to write the NDIS a letter to support an increased funding for this activity). i did some digging and i think it’s prudent to arrange a “trial” first using my current plan before “committing”to it in full.

nothing to see here

September 7, 2019

i came from my neurophysio the other day and a cab driver asked me, “what’s your problem?’ For a moment, i was tempted to answer: “Nothing. What’s yours?” i said the doctors don’t really know and just kept quiet for the rest of the ride – it would have been unfair of me to “pounce” on his ignorance.

there are systemic vestiges of the sigma of disability – that’s simply the reality.  i laud all those that want to change this but the pragmatist in me knows we are still far-off despite all the strides forward.  Pardon me getting on my “soapbox” but the encounter made me reflect.

The NDIS, although its implementation is very “problematic”, IMHO is very good in principle.  However, the reduction of my allocated funding by tens of thousands in the pursuit of the “almighty” surplus seem like a scenario to “rob Paul in order to pay Peter’,  I’m not an economist but encouraging the disabled community to spend can help “stimulate” the Aussie economy.

Maybe my argument is difficult to accept objectively given i’ve got a “horse in this race’.  Can’t the investigation of an inrease to NewStart be viewed with this lens: who says compassion and fiscal responsibility always need to be on opposite sides.