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‘Life is what happens elsewhere while you were logged in to FB’

30 March

Isn’t it amazing how those flimsy renewables are able to keep all our devices going? Now this would be an interesting social experiment, ‘Gaia says, get rid of your polluting iPhones!’

woman in yellow turtleneck sweater holding phone sitting beside laptop

Photo by Andrea Piacquadio on Pexels.com

Because, newsflash … they were made in huge factories that unfortunately don’t run on happy happy vibey ‘energy’ ..

Also, the networks keeping y’all Instagramming and groupmeming Donald Trump piss-takes don’t yet run on Wicca pixie dust ..

Let’s see, France will be OK as they have nuclear power, Russia has all the gas they (and Western Europe) could ever need, not too sure about the UK but at least they don’t have to ask any un-elected Eurocrats for permission to start taking things in their own hands.

India will try to look after its own interests as will China (and then some) .. Although we’re not allowed to use our own vast resources in a way that would actually make sense, for spurious green moralistic reasons, we might yet be OK, provided we keep a sensible government at the helm.

I know, I promised to keep my polemical sword sheathed. Am struggling as I try to do without some key ingredients that make life remotely bearable – no pun intended.

No, am not talking about hand sanitiser or Gluten Free bog roll.

One day at a time.

22 March

updated Thoughts increasingly turning to family and friends overseas as I wonder if I will be in any shape to travel long-haul any time soon if I had to, also worried as I think about my mum in a home in Holland, a new addition to the family for my niece, my God child, she’s a mum herself by now for crying out loud, in Santiago de Chile.

And more arcane murmurings of the Ignacio de Loyola kind ..

sunset beach woman water

Photo by Bradley Hook on Pexels.com

No sleep at all last night as the lovely girls next door had one of their parties. Always quite lively but completely non-aggressive and we share similar tastes in music. Have exchanged some cool tunes at times in the wee hours through open window in study.

The boys/blokes they tend to have over never seem to be too rowdy or whatever. Not sure if they were all practising social distancing last night, though.

But they didn’t stop till after 3am so will be taking things nice and slow today.

FireShot Capture 003 - Richard van der Draay - www.facebook.com

Have been wondering about the lack of up to date news on HK.

9 March 2020

Once again I have had to decide to leave FB for a while. The same thing happens over and over again and I no longer have the energy to try and explain to people that I didn’t start this site with the sole aim of helping Mark Zuckerberg and his social media venture.

16486868_1463058260371589_7732398170075887343_oWhy comment, like, share (read: boost/support) my articles et cetera exclusively on his and not my site? I’m tired of trying to tell people his site (Facebook) doesn’t really need any more help. Take it from me, not so long ago I sauntered past that company’s head office in The Valley, I think he’s doing okay ..

Oh well, my last day of having access to my car and freedom on my own terms. No Facebook, no car .. what on earth will I do?

Write perhaps? But if I am no longer on FB, will it still matter if or what I write? Not sure about that and I can’t check. Because I’m no longer going to log in to FB for a while.

5 February 2020

Will be talking to new Procto (is that how you refer to a proctologist as you would a physio?) about upcoming colonoscopy.

Just got back home after a few more days being delayed in Sydney than i had bargained for. Short story: my car broke down and tried to resuscitate but in the end had to administer last rites.

Loved that car but it was very old and very cheap so it served a purpose. Will be able to spend a little more time choosing this time. Although it means using hire cars again.

But  at least I will be able to make use of my two Wamberal carers as well as NEWSFLASH my new mainly Sydney-focused carer Ingrid, who has kindly offered to be my carer for when I am in Sydney for appointments, business meetings et cetera which is still fairly frequently.

It is great news for me because i has already started to develop a fear of crowds, public transport. A few months ago i fell  over in the middle of the street in the CBD near Wynyard station and it put the  fear of Parkinson’s in me. To suddenly, as a 54 year old man to feel so helpless, feeble and decrepit was an infernal eye opener. And, I admit to some stress-relieving effing and blinding on my part as the office workers on their coffee breaks opted to nurse their respective cappuccino’s, flat whites, lattes and soy whatevers – rather than lift a finger to even just enquire if I was okay.

Of course, once again, it was a nice young Asian chap who was breezing past with a few of his friends who spotted me from the corner of his eye and was half reaching down to pick me up, saying, ‘Are you ok Sir?’ By  that time, misplaced righteous indignation had already pumped up my adrenaline enough so I had forced myself to jump back up to my feet. (“That’ll show those caffeine clowns!”)

The last thing I want to happen is to end up a timid hermit locked away somewhere in the sticks. I also still have some ambitions and dreams that hopefully include some travel and of course so many of my family and friends live overseas, so I need to make sure I never start getting afraid to come back to my beautiful native emerald city for starters.

Am going to have to ease off on refreshing at least parts of the ROZ site while i figure out how (if such a thing is even possible) to address this Sifrol bee in my bonnet, which after all was the main driver for launching ROZ in the first place.

But all of that is very tricky and complicated and will take time. In the mean time, normal life goes on and I want to stay focused now so many good things are also happening. I think for someone like me FB can be a double edged sword as well as a distraction so may take a break from that too.

Also may need to see if my intrepid transcriptionist wants to come on board again, also considering some key people to delegate some stuff to as my disease deteriorates. At least having now been accepted on the DSP means I can put in place some elements of my life for the coming few years.

Until now, I have had to program my mind to believe that while I was surviving, treading water, from day to day, hour to hour at times, there might still be some kind of respite further down the track.


21 December – Briefly toyed with the idea of chucking the Madopar out of the pram as it’s just such an awful one for me to get used to. Having said that, it appears that unlike most other PWP, I seem far more sensitive to the stuff.  Suppose at least it makes diagnosis easier.

Yesterday, I felt quite good for a few hours, having sort of resigned myself to returning to Kinson. But, once again, it reminded me in no uncertain terms just why I had been trying to find an alternative in the first place.

Yesterday evening, my mouth was so dry and the dyskinesia to volatile that I could hardly get a word out.

Kinson – you can dance but you can’t speak.

Madopar – you can speak beautifully clear but your movements will freeze when you least expect it.


13 DecemberIMG_20191213_045107Obliged to retreat from fb again for a while yesterday which was a shame but it’s just better for me mentally as it is so often not helpful at all in terms of what I’m trying to do with this site. Creating a mini-buzz of fb and thus not my site only helps Suckerberg  not me.

 

Woke up just now 4am not feeling too badly, the freezing is pretty good and around the house at least I discovered that a foam football is a huge help as i can gently drag it along Johan Cruyff style and my body forgets completely to freeze.

Also realised that some of my mental and emotional oscillations over the past few days would have been an inherent part of not just fine-tuning but reintroducing a heavy-duty drug like Madopar again. I always forget that particularly during the first week, any change to the meds but especially Madopar being added, will exacerbate any highs and lows.

Managed to wish my mother in Holland a happy birthday after all, which was nice. Had to keep it really short but it was nice to hear her voice, especially during this time of transition for her.

I thought of recording a sound file to bung onto the Diary of an Anti-Patient page, catching a few birds with the same stone.

Domestic support coming later I believe. I hope it’s a patient sort of person who doesn’t assume (“and how are we today, mr van der draay?’ ) I’m used to these kind of things.

Please let them allow me to finish my sentences, is all I ask.

 


 

12 December UPDATE: So very strange. the most odd things happening. Phone that never did this kind f weird stuff. saying no sim card just playing up so weird.

And yes, I do know a bit about telecoms, remeber?

in dutch there’s a saying ‘it’s as if the devil’s having fun playing with this..’

very very odd ..

***

Just woke up after an afternoon Nanna nap feeling very cold. Must see if there’s been a sudden drop in temperature (outside I mean). The Madopar is not going too badly.

Made it into the GP’s office this morning, thanks to new taxi service. Don’t think it would have been feasible otherwise. Nice bloke driver Robert only lives a bit further town my street and also knows my upstairs neighbour.

GP  is very good I think. lovely Subcontinental awareness. gentle and forthright

I was told earlier his eek there’s be a on off domestic service starting this arvo but someone phoned me a few hours ago saying it would be tomorrow.

not sure what to do, will hang on for awhile i  thik

it’s also my mum’s birthday. but i’ve asked me sistr to with her well a  i’m not jp to talking and it may just upset her. she’s also just had to go into  a home

***

Would I lie to you   gr8 Xmas line-up!                          https://www.abc.net.au/tv/programs/would-i-lie-to-you/


1118076_1

Zum himmelhoch jauchzend, zum tode betrübt

Bit of a tough day and just now getting myself geared up to go get the Madopar from the pharmacy. I think what doesn’t help is that in addition to the old YOPD, I started out with an underlying natural proclivity for rocking any boat I might find myself in at any one point during what has been a rather wayward life by anyone’s standard.

This is how I – being more of a poete maudit than anything else – choose to describe what the outstanding medical support team now at last in place – of course classify in far more sober terms, selected from the latest iteration of the DSM. I think we’re up to no. 5 by now.

The last time I needed to take notice of that, I think we were still on no. 3 but i could be wrong.

Reading through the considerable hord of medical assessments i’m trying to collate in order to submit my claim for disability support, it’s been notable, undeniable, confrontational but ultimately valid that another issue that is making any prognosis or treatment plan far more tricky than even I had realised until now.

It’s not just PD but also the ‘Brush of the Dark Silken Wings’ . Just came up with that one. Just riffing, really. As Winston coined ‘The Black Dog’ for depression, perhaps i can forge some kind of legacy along those lines.  I won’t try to explain what i mean. Let those with ears etc.

It’s not funny and i don’t feel like playing it down. And I’m so tired of feeling I have to explain myself all the time. Those who love me, and there are many, will say, ‘You don’t have to.’

I wish it were that simple. I do, because as has been demonstrated, my capacity for faultlessly judging the exact predetermined socially acceptable perimeters of any situation that involves communication, interaction, being human in short – in terms of decorum, tolerance, taste, temper, resilience, adaptability and so much more – has been slightly compromised.

I’m not going to be around on FB that much while I’m taking up my lance and burro to attack some more Madopar windmills. Just wish I had a Sancho Panza ..

  • Sorry Roos, won’t get around to PM you anytime soon
  • Thanks for requesting my FB friendship, Johnny. I think I accepted it. Am not always sure what kind of buttons I’m pressing on my phone while out and about.
  • Merry Christmas, one and all!

***

Tidying up before speech therapist arrives while comfort podcasting ..

 


Crying like a friggin’ little girl at getting some positive news so long in the making ..

Later amigos


Actually, that email while also important, was not the crucial outcome to a vital application i’ve been hanging on to hear about since yesterday. Still, gave me a moment to apologise to medical centre for missing first ever appointment with new GP.

Missed it due to moronic.. ahumm, I mean quirkely Byzantine routes and timetables of local buses…

Not an entirely wasted journey as on the way back picked up an item which will allow me to move onto phase 2 of that particular cunning ploy, ‘Sourcing a Brillo pad’.

IMG_20191210_105414.jpg

Also, another important appointment later today and still need to find Madopar Rapid from a chemist anywhere in-between Mooney Mooney and Tuncurry.

 


 

UPDATE:  Thanks for locating this and, of course, it wouldn’t be ‘my kind of thing’ if there wasn’t something unusual or off-kilter about it.

So weird, haven’t had time to delve into it, but on first glance when I open it on YouTube, I still don’t know what the hell it is. I have a title but if you read some of the comments, there seems to be something weird going on.

Just following up with our FNQ correspondent: When you found it on your app, did it provide a band name, date of publication or any other details? Or just that brief title? I’m now getting even more interested..

***

From our FNQ correspondent, the answer to my anti-freezing coping query:

BTW, if anyone can help me find out what the background track is in the last clip within this post (BLOG POST, NOT FB POST) that would be great.

https://richofoz.com.au/2019/10/27/whats-in-a-name/

Am trying to find a suitably inspirational song or piece of music to have playing on a loop on my phone to start experimenting with different ways to try and tackle the frightful freezing. Thanks, Rich x

 

***More updates to follow no doubt. Yes, am stalling as I know a key email has landed in my inbox .. sounds painful, I know. Ok, once more into the breach…

Fortune favours the brave … Death before dishonour …. Deine Ehre ist … (oops!)

Laters..