A fresh sunrise each day
At least the sky is beautiful

This is Parkinson's Awareness Month and World Parkinson's Day  
A lot going on this month with some of the regular activities being supplemented with awareness and other Parkinson's related events.

Some of the key extra events include the Really BIG walk - ( round 2 )  With the brothers Kelly front and centre. A fantastic event to be a participant in again, although I didn't fundraise this year personally due to planned walk with my YOPD friend Sandra on the Sunny Coast for Beyond Blue in a month or so. That walk will be 30 km ending in Noosa. But I digress. The Really BIG Walk this year was a 12 hour epic around the city / river loop approx 7 kms. Gardens Point to the far end of the Story Bridge, back along Kangaroo Point and across the Goodwill Bridge. I caught up and chatted to Vince and Joe along the way - big effort on their part. And kudos to Prof. George Mellick who walked most of that time with them.

Following on was a very pleasant afternoon tea on the Speakers Lawn at Parliament House . Some how or other I got a mention in the speeches.

Newly diagnosed Seminar Day  
Next up was the Newly Diagnosed Seminar to be held in Redlands at HUB68 on Saturday 9 April . Some very esteemed speakers and as they were apparently short of a comedy act to warm up the crowd, I have been asked to give a quick 10 min on my diagnosis / journey. Hopefully no one slaps me in the face. I may run through my slides before then - perhaps on my morning walk. There are some heavyweights of the Parkinson's community including my neurologist Prof Peter Silburn, Prof George Mellick- the chairman of Parkinson's Queensland, Dr Robyn Lamont and Sarah Davies. Hopefully by speaking first I will get away with more casual, off the cuff. And how hard can it be? I am full of swagger now, but will see if that dissipates when faced with real people.

2022-04-09

Well, its seemed to go ok. No one slapped me and I mostly seem to get across most of what I wanted to say in the time slot allocated. A bit of a false start as no one could hear me, but freeholding the mic soon sorted that out. A good networking opportunity over a cuppa in the break and again afterwards, and participated in the panel Q&A at the close.

I've been asked to do a repeat on the next one at the Gold Coast next month which I immediately said yes to. If it helps just one other person get their head our their head around their Parkinson's then that is worth doing. And I only have to make a small adjustment to the slide show to change the number of days counter. This is to be held on the 21st May - Federal Election day.

And then there was that day......  
One of the questions that is often spoken in our house in the mornings is " so what's on your plans for the day?"  Standard response is usually " depends what happens when the phone rings ".

Thursday was one of those days that I never expected to turn out the way it did.  Just before 10 am I was off to the office kitchen to get another cup of hot water*.

The phone rings. "Its Miguel from Parkinson's Queensland. Now you don't have to say yes, but ...."  This actually means I am going to agree to what ever comes next.  Basically PQ had been asked to participate on a segment being run on Channel 10 news and they had also asked if there was someone with Parkinson's they could interview for some content. Could I say no? Not really. So "Yes that will be fine, when was this to be?"  " Sometime in the next couple of days, maybe this afternoon" " Sure, no problem." 

I decided that as I looked a bit wild and woolly I should see if I could book in a haircut in dual prep for this interview and for my session at the seminar. I was wearing casual (drinking) gear as it happened to be "Thirst-day" where I go to the pub for a few drinks with some mates.

Phone rings again. It was Miguel. " All good, but they need you to be here at our office 11:15."   

So... Its 10 am and I am in  West End.  I have a haircut booked for 10:30 at Darra. I can shoot home to Middle Park, iron a respectable shirt, and change shoes, loop back to Darra and then to Eight Mile plains. Tight but do-able.

At least I thought that until I got in the car. 30km remaining. So route change to pick up some fuel. The servo that I lined up in my head just happened to have the cheapest fuel at that moment, so when I arrived the place was all jammed up, with waiting cars and not  chance of fast fuel. Route diversion again, and located another station that was way more expensive, but had no cars. Quick fuel fill up. Onward to home, ironed shirt, changed shoes, back in the car to get to Darra. Pulled up at 10:35. Not usually in any rush, but I sweet talked the owner to give me priority spot and I had one eye on the clock the whole time..... managed to get what felt like a super slow hair cut. Back in the car and heading to Eight Mile Plains.

Call from Michelle one of the PQ team "when you get here they will interview you downstairs and we have given them your number" "Ok I'm on the road just now" .... it was 10:55, still 20 mins. Tighter but maybe do-able depending on the lights and traffic.

Pulled up at Eight Mile Plains, a single free carpark space seemed to open up for me... 11:17 the phone rings " Its Clare from 10 - how far away are you"   as it happened i was about 30 feet away. Turned off the car, ignored the pay for parking machine, walked 30 feet and it was all on.

No time to think about it, and away the interview went. Clare Barnes was great. Made the whole thing very easy. ( and Deon the Camera guy also).

The result was run on the 10 News and was posted on 10play later plus on Twitter.

Phew! A quick catch up with Parkinson's Qld team then back to work!

* as a by-the-way I drink a lot of plain hot water. I am not a cold water fan and its too much effort to make a tea just for the sake of it 

Gold Coast Big Walk  
On the labour weekend we had booked to go to the GC to see Urzala Carlsson the comedian at the Casino and so had made a weekend of it staying on the coast. We travelled on the Friday afternoon and worked out that the Gold Coast big walk was on the Saturday. I decided that I would like to walk it, so arrived and surprised the PQ crew who hadn't seen my name on the list registered - my partner had registered us under her name. Was a good walk around the track, completing 10.46 km or about 26 laps. Met some interesting folk on the walk, as I slowed up and chatted about each persons connection to the event, their Parkinson's story and general chit chat.. 

After the walk I met and chatted to a lovely young onset, newly diagnosed individual. Hearing her chat about her situation, her fears of job loss and other diagnosis related timelines made me reflect again on how very fortunate my own situation is.  Hopefully she comes along to the next newly diagnosed seminar that is coming up next month on the GC, and she may find some local contacts to help her navigate her future path, or simply to share a coffee and a chat with.

Also this weekend we did an escape room challenge - it was fun and we all seemed to contribute. Might need to see if there is another one to do locally sometime.

Family & Visits
2022-04-09
One  of my nieces from Canberra came to visit. Well actually we travelled to the Gold Coast to have a lovely dinner and chat before she and her man flew back out of Coolangatta. Was pleased that she made the effort to contact me and that we were able to zip down and back. Was lovely to see her and catch up on family news directly. Last time I had seen her was in NZ for the very special "travel bubble" trip to bury my sister Phiona's  ashes. Emma, the small "full sized human" - it was great to see you, thanks for keeping in touch with your favourite uncle. 

2022-04-12
Another of my nieces from Newcastle messaged me as she had decided to do "Step up for Parkinson's" challenge and wanted to join my team. This is great as Jennifer is working in the neuro surgery area and nice that she was thinking about me.
So that's two of my favourite nieces* in a week!!

* all my nieces are my favourites 

2022-04-12022-04-12
My step son arrived late in the day from Wagga Wagga for few days. Its nice to see him, he's doing well. Both his mum and sister are very happy to have him around for a few days.

Sunrises.
Each morning I venture out for my daily walk. This is a time I enjoy when I can listen to the radio, listen to the Kookaburras and see the sun begin to rise. I often think about people around me and the challenges that each person faces on a sometimes daily basis. Sometimes I wish that I had a real magic wand that I could wave their troubles away and make everything better. All I can do is be a listening ear and be there ready to lend a helping hand if required. And it is important to keep in contact with friends and connections, to ask "are you ok, really" . Sunrises are there to remind us that out of the darkest moments there is a beautiful light world that is awakening, different from yesterday, with much promise and goodness. Every days sunrise is new, a clean slate, something to look forward to. A time to brush off yesterdays challenges and tribulations, to say to yourself how can I take advantage of this brand new start. If ever you are feeling like things are not great and you need someone to talk to, reach out to your friends. Think about how beautiful each new sunrise is and how much you deserve to see each one. 

Becoming an Aussie.
Eventually this had to happen. I need to start the process of becoming a citizen of this great country for a variety of future reasons, and having been here since 2005 the time has come to begin in earnest.  Actually becoming a citizen is a two step process, with the applying for citizenship requiring first to be a "permanent resident". Due to a quirky special status that kiwis have where we are on our own special vias category means that we are eligible for medicare and pretty much all other services, but we cant be on  a jury and cant vote. Pretty much that the only difference between a Kiwi and a fully certified Aussie. Oh and you can get deported if you are very bad.

The process of applying for and becoming a permanent resident is a long one and after much research and going around the immigration website a few time reviewing the pathways that I am eligible for, the most straightforward one is the "spousal / defacto" path. This can take up to 24 months for them to process the application from the time you apply. And its not cheap just quietly. Application fee is AUD $7850 - this has to be paid in full on application. And then there are other fees, plus the citizenship application fee currently AUD $500 on top as well. I expect that all up I will be not getting much change out of $10k. And there is no discount or easier path for being a kiwi. In fact being an aussie "cousin", " brother in arms" seemingly counts for nothing. It's no wonder most kiwis don't bother to go through this process.

I have to do it, so this will be a case of "suck it up" and get on with it. But for all of you who are already Aussies, ask your Federal candidates why there is no small concession or  advantage given to your fellow pacific near neighbours. It may not help me but I commit that once (if/when) I become a citizen I will be bringing this up to any federal politician in earshot.

More help with Parkinson's awareness and advocacy.
YOPD catch up this month was a presentation on Red Light Therapy which was fascinating.  #thisisparkinsons

Walking.
On going through rain, and shine. Still haven't missed a day. #committed   

Medication.
No Change to the schedule or positive impact.   

Research.
There is another study coming up that I may participate in - Light effect on sleep or something similar. Will keep you posted.

Pilates.
Pilates is back on Wednesday evenings, more challenges being set for me. It has been smaller numbers with just the two of us this last week. It was good to chat to Sakura the physio who manages the class about various things to do with the exercises and surprisingly I do work up a sweat by the time its all over. As I was the last one to finish i took a short video of the Pilates studio room after I was done so you can see where I spend 45 mins every week.   

PFU Boxing and more.
This week we again had a new adventure - spin bikes for the warmup. Good to see some of the old regulars reappearing too.

Social Outings.
I will be in Toowoomba on Monday when there is a function set for World Parkinson's day with the PFU. Sounded like a nice social outing by the river at a bowls club.

Work.
Head down and focus on delivery with more work coming on stream from sometimes unexpected places. Still trying to catch up and complete some exiting projects. Many new projects in the pipeline and continuing to clean up existing projects. Work in Toowoomba ongoing and I have had a steady stream of prospects so looking solid for the next few months.

Land Sailing.
Waiting for each Sunday to see what's happening at the track.... and have had a few other events happening.  Weather conditions mean no sailing. bah...

Otherwise for me its still so far so good.
Same Same. 

And that is all for just now - keep a lookout for the next post and thanks for tagging along!