Hero's

Someone asked me the other day about hero's and if I had any, and I guess I got a couple ....

This man here, Michael J. Fox, however ranks highly .... after listening to his biography whilst i was still in the first months of my 'fun period' about how he dealt with being played the Parkinson's card at such a young age and subsequently has dedicated his life to the cause, whilst publicly still being cheery and full of humour and still popping up now and then as a great actor ... it helped me a lot getting to grips with how things just go in live, and to just find your way around it ...and that's it for sloppy and reflective Sunday peeps ......have a good day all

Check out his book Lucky Man.... its worth a read.

Solitary Confinement...

So, I Just returned back to work from a duration of 10 days without my RGPs, to give my eyes "rest" before starting with a series of tests yesterday...(my next post)

Firstly, I have to admit, I was more “lost” than I had anticipated, I literally ended up locked up in my flat with all curtains drawn for the duration of that 10 days as my eyes ended up being extremely sensitive to light now they were “relaxing”

I had stocked up on Podcast and Audiobooks and had present some Radio stations to stream on my Mobile, as Watching TV or reading a physical book weren’t really going too be an option…. So My mobile and I were going to be best buds for the next 10 days for sure…

It did mean however, no real options to keep “in the loop” via all the known social networks as I could not read it, the only thing I managed over that period was a little bit of Skype calls and a bit of “Whatsapp” via some speech recognition and voice software on my hpone. I was able to get this sort of to work,(although I’m sure this could be smoother and im going to start looking into some more efficient ways of doing this for when im having a “bad eye day” so to say) and therefor had some belters off spelling and “translating mistakes” when I looked back over the chats ive had.. So It was kind of an Internet detox at the same time I guess….

The first day I just settled in, just lying in bed in a very darkened down bedroom, mostly listening to some stand-up and a James Patterson book and still full off spirit, until suddenly I got the fright of my life….. whilst a descriptive scene was describing a gun fight it suddenly got very real indeed, I could have sworn I was hearing gunfire myself….. Massively load bangs started rumbling through the apartment complex/ local area… WTF? Ah, ok….

"Gong Xi Fa Cai – Happy Chinese New Year" – The Year of the Snake had started…

As I was invited to a celebration of this by a friend of mine the next day, I figured it wasn’t until the next evening, well, these bangs made sure ill never remember the start of CNY ever again for sure, couldnt see the fireworks, but surely heard them.

As said, I was invited by a friend of mine to come and join the celebrations the following day, and was picked up by a mutual friend of ours who patiently walked with me whilst I was navigating my way to and into her car and then into the house where the party was…. All whilst using my trusted cane…

I had been looking forward to this, being introduced to traditions and having new experiences… as apparently traditional there is quite a bit of gambling going on during these days, I counted myself kucky I actually couldn’t see a thing, as in that way I couldn’t participate or being tempted into participating into a game I would know in the first place and therefor losing all my allocated dosh… there are bonuses sometimes I guess.. (-:

Unfortunately apart from eating some really nice food, the only tradition I experienced was the tradition of “the red envelopes”
Traditionally these are envelopes filled with some money and are typically given by the married to the unmarried…. And as Im not married or have ever been, (although based on this fun surprise i might just stay unmarried for another while d-: )I suddenly was handed these envelopes aswell, and I wasn’t even family… initially slightly embarrassed, but after being reassured I shouldn't be, I accepted the envelopes… unfortunately not too long after that I already had to go home again, as the whole experience had been pretty full on…. the brightness of the daylight was really playing havoc with my eyes, and was creating a massive headache aswell… .something I hadn’t anticipated so intense and sort of set the tone for the rest of the week…

I had figured I could on occasion go to the pool at my apartment complex and at least sit there for a couple of hours, but I figured if daylight from just sitting inside hurts like this, sitting in the sun would definitely be a nono…. so that was it for the whole period…. Inside the flat, curtains drawn… fun… )-:

The rest of the days were basically do-able but slightly frustrating as-well, boredom set in, Insomnia set-in, cabin fever started setting in towards the end of the week even.

I even had a night were suddenly my vision went completely on black, this was pretty scary and completely freaked me out, but when I woke-up the next day it was almost back to “normal” again…

The only thing that sort of kept me sane were visits of friends of mine, stopping by to bring me some lunch or dinner and some chat….and then secretly checking if I actually had eaten previously or if my fridge was still stocked up enough, and if not, arranging for some top-ups…

The only other time I got out was the last Saturday , where yet another friend of mine contacted me in the evening saying, get ready, we going out and getting something to eat… this initially was very daunting, as the previous venture out, wasn’t that successful, but at the same time, what kept me sane that time around was the company and patient assistance of my friends, and that would be the same this time around….I wasn’t alone, I had company, assistance, guidance… it be ok.

Also there was the added bonus that there’d be no daylight to irritate my eyes again, plus if id just constantly wore my sunglasses id be pretty ok I reckoned and im glad I did go out, as it was good for the mind and the soul… probably more a life saver then I initially let on I guess.

All in all this whole period was rougher then I had anticipated, it was quite confronting to be back into that “black hole” for a while, but at the same time, it was something that had to be done, and in a way is for a good cause, the future management of this disorder…

Onward and upwards….

Gong Xi Fa Cai 

“Going Blind”

“so yeah, I’m going blind for …. “

WHAAAAT????? Go back… you’re going blind?  What happened… Marco WTF?

“eh?”

Well, you just said youre going blind again…

“eh yeah??….oooohhh. naaaaaAAAHHHHHHH, hold on… “

(I was on the phone to my Friend Anna, and just realised she had not seen the Quotations marks I made when I said I was “going blind”)

“No, hold on, what I was trying to say was that, I’m going blind , insert quotations marks, for 10 days to give my eyes a rest for further  testing….”

And I proceed to tell her all the details of the upcoming time of “darkness”

I’m not allowed to wear my contacts for that period so that my eyes will have the most rest possible, and we create a new baseline to work from for future treatment/ management, as it looks my eyes have deteriorated… (which is to be expected with a degenerative disease), and as I only got this in my mid- thirties, opposed to the normal early teens, early twenties situation, the docs wanted to make sure everything get monitored a bit more stringent… .fair enough I guess..

But how is that going to work?

I have, ofcourse, gone through this (the “not seeing much to almost nothing” malarkey)  before, but at that stage I was co-habiting with my girlfriend, which in all honesty helped a lot… from following at least a similar routine / sleeping pattern  to the fact there’s someone there to talk to and with, instead of sitting there completely isolated… Plus I lived in a pretty well maintained area, pavements, road and public transport wise…. and now I’m living on my own, in a fairly new area to me..

I am pretty mobile with just using my Cane and although the roads and pavements here are a bit more filled with potholes I think I’ll be fine, then again, as some of my friends here have told me, it there might still be the  safety issue of the “vulnerable white man”  hobbling along.. 

Something I honestly had never  thought of , but will not just dismiss ofcourse, after having more than just one person mentioning it…

To be honest I have been told more than once that there is a big issue in KL with regards to “smash- grab ride-by’s” on motor bikes and you don’t want to just invite it I guess…

So even with a big Shopping mall almost on my Door Step, I can’t see myself venturing out a massive amount during this time … 

I have a swimming pool at the condo complex where I live and might just try and figure how to get there safely without using my lenses and just swim and swim… or ad least don’t stay inside the whole time…

Then there a question ive been asked over the last couple of days a lot as well.. .”how are you going to cope food wise? “

Well… whereas last time I coped pretty well, and cooked quite a lot myself actually, I now have to compromise a bit more…

Firstly, previously we had an induction stove and now I have gas…. Which I love cooking with, but it brings a different problem, instead of grabbing the panhandle the risk is too big I might just grab the flame instead, so that’s a massive no-no…

Cutting up Veg and meat wasn’t ideal last time around, and will definitely not be an idea now either.. I did have a better equipped kitchen so was able to improvise a bit more, not now…

So what then? 

Well, preparation seems the key…. Fill up my cupboard with easy food like instant noodles and stuff, bread of course and so on…

Fill up the fridge with Bread spread stuff, but also stock it with prepared meals… cook them the previous week and fill up the freezer section and fridge with the dishes… and reheat as and when required….. 

But , I hear you say... how you gonna reheat if you only have gas stoves?.. .well, a friend has offered me a small one point electric induction plate that can help with that… so yeah… there’s ways…

And of course, with so many small and cheap restaurant options (people say its cheaper to eat out in Malaysia then cooking ) there’s always the option of food deliveries….. Chinese, Indian, Malay, Thai,Japanese, Western and sooo much more…

Food Panda

RoomServiceDeliveries.com

Luckily my phone can be voice controlled…

Hi, is that McDonalds? ;-)

Yearly check-up

You would assume that any "normal" person would probably make pretty damn sure that for their first annual check-up they’d go back and visit the specialist that diagnosed them in the first place….

Well… I’m special…. , or  at least that’s what my parents, brother and aunts and uncles have been telling me my whole life, although I do  think its not meant in a “motivational” manner J

In any case, I did not do what the what a "normal" person would do…. my life had changed dramatically over the last 12months after diagnosis and I was now on the other side of the world and to be fair, the office of the specialist that diagnosed me was at least a 18 hrs travel away from where I currently live… so yeah… bit complicated I guess.

Since it wasn’t going to be practical to travel to London from Malaysia, for just a quick check-up I figured id better get myself organised and find a local specialist…

So, after a bit of online research and some queries aimed at the Keratoconus GB Facebook Support Group Via Twitter using the clever hashtag #kcfamily

 I found out that I was in luck… Petaling Jaya,an area around Kuala Lumpur, where I live has an excellent Eye Hospital stocked with Experts in the Field of Keratoconus, that are acknowledged region wide in the Asia Pacific area The "Tun Hussein Onn National Eye Hospital"

So i figured i would look at getting an apointmnet here as soon as possible.... 

It didn’t start off too well though,  after a failed attempt or 2  in contacting them myself  (language barrier issues ) I was ready  to just take a taxi and walk into reception (highly frustrated probably) and get myself sorted… luckily a local friend stepped in and got me set up with an appointment instead using much less drama. 

On the day of my appointment things got pretty interesting, more to do with cultural differences and language barriers i guess,  still pretty stressful though…

When I got to the hospital I had to first register, all of this goes via signage and a “pull your number to wait in line machine”. 

However, I could for the life of me not find this bloody machine, I found plenty of screens running the numbers off, but not a machine to get a number from…

On top of this I could not read the signage.. a common issue when you have KC I guess, but this was not because of my eyes sight, this was due to not being able to read Malay in the first place of course… J

Luckily there was a lovely lady at one of the desks that saw me looking quite lost and set me off in the right direction.

In the end I had seen 4 different people to register with,  handover my passport to and pay a “foreigner” Bond (all legit bytheway.. no silly business here at all ) before I even had reached the reception desk of the specialist I had to see…

Half of the time I didn’t even had a clue what was going on… but luckily my friend who made the appointment kept me calm by texting me every 5 minutes orso to ask how things were going.

Anyway, i had retrieved all the necessary documents and was finally allowed to go up to the third floor and see the specialist..

Once I had reached the waiting room for my appointment though  my heart sank…. It was packed…. And I mean PACKED…not enough chairs and way too many people…. This was gonna be fun…

In the end it took me an hour and a half from sitting down to be seen… but once I was seen,  things happened really really quickly indeed.

The head of department / main specialist Professor Dato DrVeera Ramani was holding a clinic and saw me first, after having spent a little bit conversing and checking my eyes she referred me to one of her KC experts a Mr Puva who took me through all the regular test like corneal topography, etc..

This took about an hour and a half, and by the time we had finished it was advised to come back a couple of weeks later to run more tests, but this time,  i should not wear my contacts for at least 10days before testing…to give rests to my eyes and be able to set a proper baseline of the status and condition of both eyes…

Made sense…  should be fine, I mean, ive done 8months of it before, so 10days should be pretty easy right? 

Right...........?