i told one of my neurophysios i needed to “rest”/stop after 20 minutes of walking. bless her heart, she “estimated” my “effort” was equivalent to about three hours of walking for an able-bodied individual (i’m guessing it’s probably “closer”to about two hours). my daily exercises have increased it from about 10 (don’t quote me on that) to 20 minutes but what she said “shook” me: if i “lost” five minutes every two years: i’d be only able to manage five minutes in six years!

i asked for a “practical target” (as that’s seem to have worked for me in the past). she suggested that 60 minutes she thinks would cover most activities. using my “logic” to project out using a linear function (which is unrealistic since i’m not a robot and will tire): this is about six hours to another person. nonetheless, i need to work on building my endurance to “boost” my current capabilities.

like one of my neurophysios say, we need to work on what we can to prolong my “independence” for as long as possible. i have begun “slowly” by trying to remain standing whilst watching TV. Also, i am currently noting my speed/RPMs (like was suggested to me) and not just increase the duration on the stationary bike.

while motivation has been tied to “success” – it has recently been reiterated to me that it’s definition should be expanded to what’s personally important and not just the “narrow” criteria of what society dictates (as a migrant i’ve noticed some “variability” in certain aspects).

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’ve always wondered about this but not until i had to use it in my code did i bother to find out the difference. apparently, it’s just a spelling thing: “grey” is the preferred British way; while some Americans use “gray”.

i was originally from the Philippines and the educational system there is heavily influenced by the Americans, and have migrated to Australia awhile back – hence the “worsening” of my confusion.

it took me awhile to resolve the “s” and “z” (pronounced here as “zed”.

my speech therapist says it’s another “obstacle” for me in learning to speak again as my accent is somewhat “Americanised” and most words are produced differently in Australian-English.

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.

CAVEAT:  you might have noticed that my title format has slightly changed.  i’m still starting it off with what ever comes to mind and after the colon i’ve appended what i think the post is about (you might interpret it differently or have an alternative understanding when you “read between the lines”).  it has been brought to my attention that some readers may not want to go through the entire thing for the title to make any sense.  this is not an egregious attempt to increase ‘likes’  or to act as ‘click-bait’ but shouldn’t it be part of ‘sharing’ to make stuff ‘more digest-able’ – looks like i still have a ways to go.

i underwent a medical procedure recently – recovery time is typically from one to two days –  because of my age it took me three days. so i temporarily stopped my daily exercise program for about two weeks – this affected me but i didn’t notice right away.  it became first obvious to me at a speech pathology session.  i used to get through them just fine even if they were during the afternoons – i didn’t feel winded afterwords but my sound production performance faltered occasionally.  Moreover when i went to my regular neurophysio appointment, she could physically feel the difference – i found out that apparently pain can also cause your muscles to “relax”.  At first i had done this to reduce my anxiety levels (but perhaps because i now take a natural supplement for it it’s less pronounced) but, also very importantly, getting my core strength up not only helps me avoid falls (and minimises potential injury) but also helps my speech.  Suffice it to say i’ve started up again and hoping to get back to the level i once was.

these aren’t directly related but are also from recent “trips” outside my house so…

i want to whinge about the three (let me be clear: not all or even a majority of them) taxi drivers driving skills were really bad:  the sudden stops-and- starts, not slowing down enough to take a round about, or abrupt jerking of the steering wheel.  These gave me a headache despite sitting in front and having the road visible – imagine how much worse i would have felt if i sat in the back.  i was going to complain about another thing but in hindsight one of my drivers was “self-obsessed’ that he would have acted that way to an “able-bodied” passenger.

Despite using my “letter board”, some drivers (not only taxi drivers but one support worker), still misunderstood me.  i suspect it’s either because they’re not patient enough to listen or having a preconceived notion of what i’m going to say (Ding!  Ding!  Ding!:  it’s usually wrong).  i understand that my speech can be hard to understand especially since this is probably the first time we’ve talked (on a few occasions i get the same drivers) but mistakes ca be avoided:  like going the wrong direction, it’s on the other side, that’s the wrong address, accidentally running me over,  etc.

we just want to feel listened to.  here’s a video by Purple Orange (it kind of reminds me of the You Can’t Ask That format on the ABC) about diverse communication shared on Darryl Selwood(Ph.D.)’s blog:  http://darrylsellwood.com/?p=998.  While i don’t  relate to everything said, i agree with the central premise of respect and the underlying theme of “not judging a book by its cover”.

it is very easy for me to accuse the drivers of not thinking: parking too close to the incline, the ramp, or curb so it’s “tricky” for me to get into or out of the car;  dropping me off by an entrance with only stairs ; driving “far” the door so need to cross the street, walk “some” distance, or negotiate a challenging surface (like inclines, uneven surfaces, pebbles, etc.); ask me directions or instruct them where to pass or stop; or turn the meter on while i’m still trying to get in the car (i believe the law states it should be only activated when i’m seated).  sometimes they can’t be bothered or are in a rush but sometimes i think it’s because they haven’t been exposed to or educated about disability – these are tasks they take for granted so there’s a need for more “training”.

FINAL WORD (let me know if these prompt helps with readability or i should go for more “traditional” headings – i know a poll is a more suitable for this but i probably won’t get enough respondents for a truly statistically valid result and, frankly, confronting my readership numbers scares me).  There’s a tension between keeping the post short-and-sweet and making it comprehensive enough to be informative – after all like they say, perfect is the enemy of good. Moreover timing is an issue, some thoughts have an ‘expiry date’ while others not so much.  While Twitter isn’t for me (trolls aside), it take me some time to type – this has the added bonus of letting me reflect and not simply reacting, All-in-all, i’m still struggling with the balance.  Furthermore, i feel the pressure to post frequently – as evidenced by the number of “self-corrections” right after i publish – when i should learn to recheck my drafts first.


barely breathimg

October 5, 2019

i’m currently taking natural supplements daily to help combat my hay-fever (rhinitis to be technical),  It helps a little but I can feel when the pollen count is high (even when the entire house is closed) or even when it’s only moderate if a window’s left open.  It can manifest itself through itchy eyes, constant sneezing, blocked nostrils, or in really sever cases, an inability to breathe.

i noticed today that i exhibited the first two symptoms – which i noticeably have less of.  However, my wife propped a window open as she was cooking – even once i closed it i knew i was too late and the pollen had already gotten in the house because i couldn’t stop rubbing my eyes.  Later, i had a string of sneezes – which i now rarely do.

it was only once we lived in Adelaide that it became obvious – i lived in Melbourne for a year and was unaware of it then – some say it’s because the wind here blows through deserts.  even when i was in the Philippines and Victoria i sneezed consecutively ( my record is 27. if i recall correctly) so i must have had some form of allergy.

you need to understand that for someone with claustrophobia the prospect of not being able to breathe is a really terrifying proposition.  Moreover, sneezing “wildly” for anyone using a rollator, forget steering but trying to maintain upright balance.

it’s  more prominent now since it’s Spring.  It’s “harder” to do my daily speech exercises now as my nose is blocked. it can be quite challenging to produce the correct sounds while also multiplexing breathing with the mouth – co-ordination is not a strength these days!

learning to un-learn

September 30, 2019

my accent (along with my disability) makes it difficult for me to be understood.  My English was influenced by American (as they “imposed” their educational system on us, unlike the Spanish who “chose” us to be “ignorant”) but someone born Sate-side could easily tell i didn’t grow up in America.

we spoke English at home as my parents spoke different dialects – sadly it was their only common language.  i learned Tagolog (comprising most of Filipino) from the “streets” (as this was only a subject in school during my time – the medium of instruction is in English).  Suffice it to say, my vocabulary in Filipino isn’t “great” or “refined”.

Although i was taught the letter “j” in our alphabet, it is pronounced as “h” in our native tongue – so producing a “hard j” is more difficult for me (and is further compounded by my current speech quality).  During my education, “z’ was not part of our alphabet (i think it’s now included) so this is also not an “easy”  sound for me.  Essentially, my condition impairs my ability to produce “active” (that is, with the voice turned on) sounds.  While previously i made “fast progress” through daily practice and sheer will, i need to be more conscious now as i have a tendency to revert to old habits as my speech patterns are already well established {this is not helped by my age).  Case in point, (unlike consonants) there’s an “acceptable” range for vowels which children “easily” mimic and older people struggle with (that’s why it’s easier for you to learn another language ehen your “younger”).

i’ve got such a “bastardised” accent (as my pronunciation of syllables doesn’t “neatly” fall under one language) that i can pose a challenge to my speech pathologist.  =)

there appears to be a tendency of social media to focus solely on the good – there’a a plethora of “humble” brags and “unrealistic” posts.  i’m obviously not a big fan but i can understand why it’s worth it “following” certain people.  Don’t get me wrong – i’m all for democratisation and giving a voice to the traditionally voiceless but a lot of it is to me vacuous and inane palava (or palaver if you prefer) – not to mention the trolling and glaring divide.  i worked in ICT for a number of years prior to my ABI (Acquired Brain Injury):  technology can be a magnifier for “bad” and  not just a multiplier for “good” – in my experience, it’s a double-edged sword.  i believe posts shouldn’t be policed or censored (free speech and all) but people should be better equipped to discern the “wheat from the chaff” – a form of “natural selection” of sorts (if you will).  It would benefit from balance (like most things in life).

part of this is “processing”.  Some of it is “snobbery” (i’m only human after all).  That said, take from it what you will – i’m not narcissistic enough to discount any “unintended interpretations” of my writing.  My only caveat that it is partly out of need (and partly due to therapy) so it might not be most people’s “cup of tea”.

there’s undeniably some “good” occurrences recently.  Firstly, i’m nearly halfway in completing my online certificate in data science.  This will, “hopefully”, help me get into “gainful” employment again after being “sidelined in the wilderness” for over a decade now.  At times, I used to work a part-time job along with a full-time one – so being homebound was a “drastic” change.

over the last two weeks, i’ve been finishing online crosswords daily. It started with 2.5 hours but now i’m down to a little over 50 minutes usually and my best time is approximately 38 minutes.  i’m merely an amateur cruciverbalist who wants to improve and build up to something challenging like the New York Times Sunday crossword.

i’ve had no falls over the last several months despite my last two  SARA (short for the Scale for the Assessment  and Rating of Ataxia) tests showing slight deterioration.    i think this is mainly due to my neuro PTs’ advised interventions added to (or slightly modifying ) my daily exercise routine.  Sure the NDIS (Australian National Disability Insurance Scheme in case you’re not aware) is a source of much consternation and a bugbear to negotiate (even for mundane tasks) but thanks to it i can now afford to go weekly instead of monthly (which used to be the case).  I had several near-misses lately:  the point is I didn’t fall down where a couple of months ago i surely would have.  As in everything there is both good and bad – i’ve heard it referred as a major reform since MediCare:  there are obvious, signficant “teething problems” with its initial rollout but you can’t really fault the intention (it is the implementation where it falls down – pun intended ).

sadly, i’ve been binge watching a lot lately. Whether to “empty out” the numerous recordings on my DVR (Digital Video Recorder) or streaming over the Internet – i’m such a cheapskate that I only use free services (thankfully, Australia is quite “progressive”).  My  current darling is  “You’re the Worst” on SBS (Special Broadcasting Service) On Demand – the “Resume” function makes the bugs bearable.  I watched all episodes of the four seasons available on the web. I find the writing witty and funny (admittedly, i’ve got a “dark” sense of humour i liked the tv show Legit , i found the movie Pulp Fiction hilarious, and mostly laughed throughout the stage show, The Book of Mormon ). I enjoyed Seasons  1-3 ; S4 was ok (my “disappointment” with the new intro notwithstanding) and still will watch the last season (i’m curious how they will wind it down and then end it). i think Ricky Gervais was right to cap the UK  version of The Office after two series.  i use TV to distract from the thinking i do during the day – so “smart” and “subconscious” programming is much appreciated.  The last show made me think of the novel, The Unbearable Lightness of Being although watching is supposed to relax me.  i sometimes read (with the aid of a magnifier) during ad breaks (i know this is counter to my intent but i can’t really help doing it).  i find it helps me think more broadly about things and i’m not limited to seeing things only in a certain way.

My Ph.D. has stalled and as of late i rarely write anything – and when i do i only mange a few words.  Maybe i’ve just “hit the wall” and i’m just tired given the number of years (when a lot of things usually pique my interest) and the effort to type compounded by my waning interest.  Maybe it’s not up to scratch given my exacting standards and past performances.  Maybe it’s my growing frustration with the admin required and my over reliance on altruism upon learning the hard way that it’s self-interest that often yields results.  Maybe it’s my substantially increased anxiety due to my health concerns or fast approaching conclusion of my candidature.  i suspect all of these factors play a role.  Thankfully i’ve got a supervisor who believes in me and my abilities – she’s doing what she can to make that path is still available to me.

i was told that walking outside would do some good – not only would it further develop my legs given a functional task but it would also expose me to fresh air and vitamin D.  I’m trying to incorporate this into my routine but admittedly i’m hesitant given my bouts with hay fever and uneven terrain and inclines.  On days when the pollen count is not too high, I go outside the front of our house to gradually acclimatise me to the irritants and eventually build enough strength to confidently tackle going around the block.

My speech difficulties have taught me to listen more to others.  My walking challenges have resulted in me losing weight (as the heavier i am, the harder it is to remain ambulant), made me appreciate more the challenge of getting robots to balance on two legs.  My greatly reduced typing speed has caused me to concentrate more on quality rather than quantity. As has happened in the past with other persons with disabilities, it has ‘forced’ me to adapt and strategise to perform common tasks.

It is easy for me to continue being negative: seeing silver linings does not come natural.  These are the cards i have been dealt and need to make the most out of them.  Admittedly, it still pisses me off when people whinge about what i consider to be “terminally trivial” things but i have to learn to focus instead on the things i need to do and how i can perform them better.  While the Chinese symbol for ‘crisis’ has been disproven to mean both ‘danger’ and ‘opportunity’ simultaneously, it is still useful to see both the  yin and  yang of things.

almost famous

November 13, 2017

the other night I saw the 2015 dramatic film: “The End of the Tour” on SBS.  I wasn’t sure I was going to like it – it was essentially a conversation and given it’s difficult as medium skews heavily toward being visual- but I really enjoyed it.  It was an interview over several days by David Lipsky representing Rolling Stone magazine about the critically-acclaimed author David Foster Wallace (I must confess whose name I hadn’t heard before).

I found that actors cast, Jason Segel (for Wallace) and Jesse Eisenberg (for Lipsky) were well-thought choices.  They were both “smart” enough that neither performance seemed “wooden” (suffice it to say it wasn’t an enormous stretch to suspend disbelief).   This can be “tricky” given it was a mainly dialogue-driven plot.

Aside from the words, I think what drew me in was the shared “addiction” of watching too much television.  Moreover, I can relate to wanting a job where not too much thinking is required (as a respite of sorts) – it reminded me of a friend that once said that a “mindless” task was a welcome break for her from her usual job.  Furthermore, I liked that within it was featured an action movie that didn’t require a whole lot of mental horsepower to enjoy (to what I viewed as juxtaposition when the characters watched a black-and-white film on tv).

I found the scene meaningful when the proponents couldn’t find where they parked their rental car in the airport.  This just illustrates how there are different kinds of smarts and how book-smarts is not always preferable in accomplishing certain everyday tasks.  As the adage goes:  Common Sense is not that common.  This is a moment of levity that cuts the seriousness of an otherwise dry account.

I enjoyed the line:  “Nice but not real.” How some situations are artificial – one doesn’t have to look far for the often fabricated constructs of reality tv.  Don’t get me wrong; I’m not hating on the entire genre but, like all “entertainment”, some shows are more “watchable” given the individual’s purpose.

I’m now curios about Wallace’s opus of a novel:  Infinite Jest and Lipsky’s best-selling memoir: Although Of Course You End Up Becoming Yourself. Hopefully, I’ll eventually have time to read them.

as time goes by

April 12, 2017

last night a friend (who was also a student at UniMelb and now based in Sydney) had dinner at our house.  It’s been years since we last saw her.  Maybe it was the shared experience but it was a confluence of factors (including our “academic” tendencies and that we didn’t share accommodation).  I’ve got few friends because of my numerous quirks but when you meet someone, you just know if you’ll get along with them.  I’m not that nostalgic but it was good to catch up on “old” times