Farewell ST1050 and some sad news

[Paul in NZ]

Well its gone... First guy turned up and we ended up arguing about the price... He won and gave me $500 more than I was asking...

After making this the bike Triumph should have made vis Robert Taylor why sell? Fact is we were not using it so much as mainly Vicki was stuggling to enjoy it even as a pillion.

Talk about a journey we have been on... You seriously wouldnt believe it BUT we now have a diagnosis and sadly it is not a kind one we wanted and sadly our world is now narrowing.. Vicki has been diagnosed with FTD Syndrome (semantic variant) which is essentially a dementia that strikes people early and its neither treatable nor survivable...

However when shes out on her mountain bike or the CX bikes the lights come back on and 10 years drop away and so thats where we are concentrating..

The $$ will go a long way to say a trip to Whistler MTB park or similar... People talk about bucket lists but living them is another thing altogther..

I know some of you have met Vicki and realise what an amazing woman she is and perhaps you can understand how cruel this is. However it is what it is. 40 odd years ago when we made our vows this was the in sickness and health bit we signed up for and you can be assured that what I can humanly do will be done to keep my darling Vicki going...

We are devastated but we will keep on riding with the TR6C (where she is seriously happy) and of course the bicycles...

Dont delay folks - live life to the fullest because you never know...

[Dadpole]

Fuck. Hang in there and don't hesitate to lean on friends when you need to.

[Str8 Jacket]

Paul, much love and support for you and your family. Stay strong and be kind to yourself. Lean on your friends and ask for help God knows you've both been paying it forward for many years.

Much love, Hels xx

[Paul in NZ]

Paul, much love and support for you and your family. Stay strong and be kind to yourself. Lean on your friends and ask for help God knows you've both been paying it forward for many years.

Much love, Hels xx

Actually from you Helen that means more than anything... thank you

[AllanB]

Sorry to hear. Enjoy the time you have together.

[Maha]

Very sorry to read this terrible news about Vicki, Much love/strength and courage to you both in the time you have left together.

[Cosmik de Bris]

Sad news, I'm very sorry. Dementia is a cruel illness.

Cheers

[merv]

Sorry to hear this Paul. Best wishes to Vicki and for sure make the trip to Whistler :soon:

[F5 Dave]

Hang in there. Your attitude is inspiring.

[Frodo]

Not nice news, but a very appropriate response!
Wishing you both all the best,
Bob

[BMWST?]

All the best mate.I dont know you but that is not important here.Look after yourself too

[bungbung]

Kia Kaha Paul & Vicky and your family
Ola

[MD]

I'm lost for words Paul. There you and Vicki were at the gym days ago. We chatted, Vicki smiled goodbye as you both walked out the door, just like any other ordinary happy couple.

Shocked and our thoughts are with you for the tough days ahead unfortunately. My Dad died in November from Alzheimer's so I have some understanding of how it plays out.
As you said, embrace every moment of life. It is short.
If there is anything us locals can do - ASK away.
Best wishes
Mark

[Paul in NZ]

I'm lost for words Paul. There you and Vicki were at the gym days ago. We chatted, Vicki smiled goodbye as you both walked out the door, just like any other ordinary happy couple.

Shocked and our thoughts are with you for the tough days ahead unfortunately. My Dad died in November from Alzheimer's so I have some understanding of how it plays out.
As you said, embrace every moment of life. It is short.
If there is anything us locals can do - ASK away.
Best wishes
Mark

Thanks Mark

Keeping going at the gym, changing diets, riding our CX/MTB's etc are all a part of our plan to slow this down to a crawl... Like you said Vicki is fine most of the time and its only when you are aware that she is loosing here language that it shows up. Eventually it progresses into the main part of the brain and yes its just like the more usual dementias then..

FTD is a reasonably new diagnosis it that its only just been unpicked from other conditions and better understood so there is not much solid info or enough data to predict progress. That said we are not letting the grass grow under our feet and sitting around moping about it... It is what it is..

[caseye]

Been a while mate, since we last said hello in the same bit of NZ, like nearly ten year ago.
You guys most certainly deserve a big break soon, this is hard news to respond to.
Excpet maybe that if Dorkland is a place you need to be theres room enough here for a tride if needed. Always.

[Paul in NZ]

Well it has to be said that 2018 isn't a vintage year for us.

On top of Vickis illness I have just had it confirmed that I have prostate cancer. I mean to bloody say wtf...

Still, this is my second dance with cancer now and like last time its reasonably early days because I believe in staying on top of this sort of thing and I have good options albeit with some nasty potential side effects. I'm definitely getting a bit fed up though with doctors this year.

[Grumph]

Not good news. Join the "don't want to see another doctor" club...

That said, I know a couple of guys who've beaten prostate cancer. Both are even riding without gel seats....

[caseye]

Keep the attitude me ol mate. Nothing is over until it's done, so please keep working on it. Just come out of Hospital with an irregular heart rythm and its not been fun,the OP I mean. Op, Thanks Southern Cross,was 26K done in 2 weeks, as opposed to public , upwards of 3 - 6 months.
You guys deserve a break, keep poking the stars, and seeing what comes out.

[Paul in NZ]

Yes this was definitely not my idea of what the later parts of life would be like... Gah...

Oh well - not planning on popping my clogs anytime soon..

[MD]

Holy shit Paul. So sorry to hear now it's both of you facing unknown futures.

From one aging bugger to another this is not fair. When I see fat unhealthy lazy people that smoke like a train, drink and eat crap for years, never exercise and they get seriously sick I think, what did you expect and have little sympathy. But you two are super active, look after yourselves, exercise like a twenty year old athlete. Folks on here won't be aware that you are a seriously fit and strong individual.
So unfair. Best wishes
Mark.

[Paul in NZ]

Thanks Mark...

Vicki and I have never expected life to be fair but its still all kinds of awesome once you stop feeling sorry for yourself.. We went out mountain biking with the #1 grandson on sunday - we had a blast...

It looks like I've caught this early so I'm confident of a good outcome for me albeit with a bit of grief up front (or down below) and that seems to be the choice. You either do nothing now and have a shit load of grief later or front up now and have it easy later (accepting all the usual risks around this kind of thing). So my plan is to get the op after we get back from our next adventure trip so I will be 100% fit again when Vicki needs me to be.

I mean you seriously cant make this shit up in a story can you.. No one would believe it LOL...

I have to say the drugs from the biopsy were making me feel pretty crap and I was a bit bummed that I wasn't likely to be able to do the santa thing this year so I shaved my beard into a big old fuck off handle bar moustache... It felt GREAT... Screw you cancer... LOL...

[actungbaby]

Am very sorry dude like one other said.dont know you both.
Keep enjoying the bikes and gym.
It's moments like this in your life that u need each other. U realize. What's important. I be getting folding home app and pc program again running it. Help with research with Stanford university.
Thanks Mark

Keeping going at the gym, changing diets, riding our CX/MTB's etc are all a part of our plan to slow this down to a crawl... Like you said Vicki is fine most of the time and its only when you are aware that she is loosing here language that it shows up. Eventually it progresses into the main part of the brain and yes its just like the more usual dementias then..

FTD is a reasonably new diagnosis it that its only just been unpicked from other conditions and better understood so there is not much solid info or enough data to predict progress. That said we are not letting the grass grow under our feet and sitting around moping about it... It is what it is..

Sent from my SOV31 using Tapatalk

[skippa1]

Only the good die young...i am living proof. Never give up cobber.....

[Paul in NZ]

Just and update for anyone that care…

My cancer operation went well and the pathology report indicated a very good chance that this may result in a cure. If so – that’s paul 2 and cancer 0 but frankly I’m not keen on round 3. Obviously with an operation like this there are still a few things to follow up on and recommission if possible but nothings dribbling down my leg and I’m reasonably fit and healthy so I’m well pleased.

Vicki is going OK as well. A few setbacks and charlatans to deal with but I honestly think we have a shot at slowing this horrible illness down. If I can get her in reasonable health to her lat 70’s that’s a win – putting her into care at 63 isnt…

So after a shit load of searching, reading and researching I have nearly everything in place for Vicki now. We found the smoking gun (maybe) that triggered this, addressing that, got her on supplements to support her immune system and then tweaking it start to strengthen cell walls etc. We have changed her diet and now I just need to get us back on our bikes and start her on yoga or meditation but again I will have to do it first, learn all about it and help her.

I actually had 3 hours to myself on Sunday. I changed to oil on the old triumph in peace and quiet.. It was simply bliss…

This experience has drained me. Honestly its been very testing and its no wonder to me I developed cancer. I fully expect the stress to generate the 3rd brush eventually but it’s a risk worth taking. I did a mental health awareness course through work and finally realised the stress I was under (other factors as well which I cant share). So I called one of those 0800 numbers – cheered me right up… I think they employed Billy T – I couldn’t understand most of what he was saying but there was enough to make me realise I’d better sort it myself. I did call the recommended counsellor – she told me I’d called at a bad time…. I laughed for the first time in months… Silly cow…

So its been very interesting reaching out for help – basically there isn’t any. You need to go privately and then its just random people from the phone book of which most are mad or utterly useless. The medical profession cant help and even the physio wasn’t keen on treating her sore neck once he realised she had FTD because ACC wont cover that… (not once did I mention ACC)

I compare this to a colleague who snapped a tendon playing soccer with his kids. He got ACC. Fully covered, taxis to appointments and to work until he was back on his pins. I’m fairly bitter how we have been treated. They take one look at us and ‘oh white middle class with an income’. They can fuck off – I’ve got the Fijian napoleon juggling burning kittens and chainsaws in the waiting room and 13 P addicted beneficiaries all standing on bridges…… Sorry but that’s how it is…

Still there are positives. I’m more resilient and stronger and I take no shit... I'm still ‘technically’ depressed but I also realise that this is just something to be endured and no help will come so just muddle on and do my best plus I get huge fun tell doctors to fuck off if they wont help… We are definitely painting outside the lines treatment wise but its bloody working (our GP is a star) so they can piss off…

If anyone has any questions about dementia - fire away

[pritch]

That reads like hard times. Most councellors have personal issues which is why they became interested in counselling, some will appear "different". I was told that by a person who undertook the training, she told me it quickly became apparent that most on the course had unresolved issues. Without being unkind she would have been one of them.

Good luck with your future tests and I hope your wife travels OK.

[merv]

Thanks for the update Paul and there isn't much I can say except hang in there and best wishes to you both.

[russd7]

sounds like its time for a pat on the back, well done and keep it up.

[caseye]

Good news on the prostate cancer mate, now go bend over backwards and get Vicki into that Yoga stuff, keep thinking they're all a pack of u no wats, cause they are, but hey, theres plenty of ordinary types out here, who would without question, come if called, listen and offer sage ( of course) advise and follow through with support and shoulders.
Stay strong, check yer pm's mate.
:bleh::bleh::bleh::bleh:

[SVboy]

I admire your strength and stoicism. Hang in there.

[nerrrd]

You should be really proud of yourself and what you’ve achieved so far.

I’ve been fortunate enough to have had the support of great counsellors over the years, privately of course so it’s cost me a fortune, but they are out there.

My parents have been dealing with the consequences of Lewy Bodies Dementia (much later in life) for going on five years now, and the toll it’s had on both of them has been heartbreaking to see, but it has brought the family much closer together.

[Paul in NZ]

You should be really proud of yourself and what you’ve achieved so far.

I’ve been fortunate enough to have had the support of great counsellors over the years, privately of course so it’s cost me a fortune, but they are out there.

My parents have been dealing with the consequences of Lewy Bodies Dementia (much later in life) for going on five years now, and the toll it’s had on both of them has been heartbreaking to see, but it has brought the family much closer together.

I'm sorry to hear that - search out the book by Dr Dale Breslin. Its been our roadmap

[MD]

Brave of you Paul to share those feelings, feelings that us blokes don't have apparently. Keep up your spirits as best you can under this adversity and as always best wishes. You look way too strong and healthy for 63. Act your age, sprout a wobbly gut, go bald (like me), get the old man stooped over walk. Oops, cancel that I'm a stone throw behind you, lets stay young.

Your comment on us being middle aged white folks with incomes hit a sore point. I feel the same that we are the pariah of society and the workforce these days. Not welcome anywhere except by the IRD who laugh at us as they take our money because we were stupid enough to make an effort to get ahead in life.

No wonder I ride a bike. The only times I have ever got anything back from my taxes is when I break a leg. I paid for some ridiculously expensive vaccinations for our [adult!] daughters the other day. Others I learned get it free, because unlike me all they learned in life was how to hold their hand out.

[tanken2]

I'm in the retirement zone and 40plus yrs wed , window of opportunity presented itself to get back on a bike . Deciding what to get went from conservative to the extreme . I took the extreme path as the winter years of life are approaching and I thought it is now or never. You just don't know what's round the corner so make the most of today . Best wishes to you both .

[Big Dog]

Geez Paul. That's a hard for you're plowing. I wish you well. Congrats on the 2 nil.

[Paul in NZ]

Geez Paul. That's a hard for you're plowing. I wish you well. Congrats on the 2 nil.

Cheers everyone - actually its not that hard... Once you set a course you just have to follow it through and I have found having a bit of a hit list to tick off helps... The hard bits setting the course but you just need to research research research…

The stress comes from being totally immersed in this but I can honestly say after calling the counsellor and laughing at the silly cow something clicked and I felt a lot better.


LOL... I actually think we are onto something with Viki but I wont know for a long while yet..

[bluninja]

Just and update for anyone that care…


This experience has drained me. Honestly its been very testing and its no wonder to me I developed cancer. I fully expect the stress to generate the 3rd brush eventually but it’s a risk worth taking. I did a mental health awareness course through work and finally realised the stress I was under (other factors as well which I cant share). So I called one of those 0800 numbers – cheered me right up… I think they employed Billy T – I couldn’t understand most of what he was saying but there was enough to make me realise I’d better sort it myself. I did call the recommended counsellor – she told me I’d called at a bad time…. I laughed for the first time in months… Silly cow…

So its been very interesting reaching out for help – basically there isn’t any. You need to go privately and then its just random people from the phone book of which most are mad or utterly useless. The medical profession cant help and even the physio wasn’t keen on treating her sore neck once he realised she had FTD because ACC wont cover that… (not once did I mention ACC)



Sad to here that things have turned to custard, but heartened that you're moving forward with purpose to enjoy your lives. I know what you mean about reaching out for help and the counsellor lottery, and whilst I'm sure most of these people are genuine caring people wanting to help, some of them have less skill at listening than a person behind the bar. That has to be a classic quote on so many levels :)

[scumdog]

Shit. just looked at this thread after a long absence - and almost wish I hadn't!

Seriously, keep up the fight Paul, both for you and Vicki, you've always struck me as a positive guy so keep it up, persevere!

(It all puts my niggles and gripes into perspective)

[Paul in NZ]

Just a quick catch up...

Hot and dusty at our place and the lawn is shrivelling so less mowing required. Saturday was a stunner so after the chores we got onto our CX / gravel bikes (ruggedized push bikes of the dropped handle bar sort) and took a ride up the coast, through the estuary board walks to the Waikanae river trails and up to Waikanae for an early dinner (Salt and Wood) and then back down the other side of the river and home via the expressway. Only 35km but it was my first time back on the bike since my cancer operation just before Christmas. I was knackered when we got home and needed to be revived with a wine or 2. Vicki was a star - she misjudged the edge of a path and took a tumble off her bike but she was back up and riding in a flash. Pain does not always equal hurt we say.

The change of diet, supplements and the exercise has really been good for her - I mean she still has FTD of course but her happiness and inner peace are up and the outward symptoms are reduced. I'd call that winning...

Sunday we got out the 1970 Triumph TR6C and rode over the hill to the British Car day to catch up with the classic m/c guys and look at all the old cars we used to have back in the day. We grimaced when we remembered the hideous maintenance and suffered no desire to own one but its nice to look.. My personal fave were the guys who restore old agricultural stationary engines etc. Definitely the weird and wonderful with open crankcases and automatic exhaust valves etc. I suppose that's a form of mental illness in itself but we were delighted with the chuffing and all in all it was a fabulous day out.

All in all Vicki is currently thriving. There is a definite improvement or at the least we are holding the line which is encouraging... It was the first day in months I actually felt like we were living a life and not fighting for one...

[caseye]

Play it again Sam! Ah Paul and Vicki. Nothing beats being out there, riding, motorcycling, walking even, just doing it is good.
Awesome to hear your words, looking forward to many more expedition reports. Off on a 10 or 15 K (not sure yet) wander on me 2 pins, stinking hot and traffic up the WaZoo, but it's gotta be dun.:sunny:

[actungbaby]

Good on you mate. End the day your there for your wife all that matters, u found what matters in life rest of the time is waiting for are moments where we step up nr counted. I done twice for my parents. Twice for my nephew.
Stress is a nasty one.at the time your too busy getting on with it.
But when u get time. It can hit you. Reading your. Story am glad u shared thank you.

Sent from my SOV31 using Tapatalk

[riffer]

Can't add much to what the others have said Paul, but like everyone else I'm wishing you guys all the best. Seems like the best people get the toughest breaks, doesn't it? Congrats on the bounceback from the cancer, and I hope it stays that way and you guys get some good times yet.

And loving stationery engines is most definitely not a mental illness... or maybe it is, and I'm screwed too.

Keep doing what you're doing mate.

Simon

[Paul in NZ]

Cheers everyone... Thanks for the kind words but we just see this as us following our belief that there isn't anything that cant be made a little better by attending to the basics... I'm certain that I've sorted this cancer - I know it sounds nuts but I feel well again... (probably a head thing) Vicki is also feeling well - obviously she has some significant issues and being realistic the odds are certainly stacked against her but she is fighting and I'm very proud of her. None of this is easy but we are getting days now when we feel like we are living a life and not fighting for one.


All I can say is this. Labours 'wellness budget' is a not very funny joke to us.... If you fall between the cracks or have something difficult you are screwed. There is no help and no one will touch you with a 10ft barge pole... A colleague of mine has a sick child with cancer. Yes they have had to advocate but its air ambulances to chch for this and flights and accommodation to starship in akl all around - no problem. Now I'm not trying to compare illnesses because you just cant but the point is if you have an accident or the right illness then there is a marvellous response. If you don't - its completely different... I honestly think that had we had just a touch of care we would have been in better shape and fought back sooner.

[Yokomama]

You are doing a great job.
If I were local, I’d go for a ride with you and get yous a pint.
My grandad succumbed to dementia some years ago at 81 - he’d forgotten who I was (didn’t see the bloke too much living in the 09 and he was down in welly)
Keep doin what ya gotta do. The black dog isn’t a joke - been dealing with that most of my adult life.
You are a star, more importantly, a star in someone else’s sky.

[Paul in NZ]

Time for an update…

Not a lot of time for motorcycling lately but I’m currently rebuilding the clutch / primary on the TR6C so I should get some summer rides in… The primary drive is a shitty dirty job on these old bangers so do it right and forget about it for another 5 years.

On the health front – its been interesting… In my case I’ve got nowhere. All the mens health fuss and prostate cancer ‘raising awareness’ stuff is just that – raising awareness and trust me I’m aware.. If you are unlucky enough to suffer a surgical issue you quickly become a non person. Due to the mishap I will have erectile dysfunction for life but apparently that’s OK because as a type 1 diabetic in my early 60’s that was going to happen anyway (WTF).. So be warned – if it does not go well – no one will help and you are on your own! Oh it is possible with an injection in yer wosser but at $150 for 4 it’s a high days and holidays thing… Oh well – you do actually get used to it after a while but I cant help but wonder how in the aftermath of some other cancers thers reconstructive surgery and all sorts. Men? ew gross... …

On the Vicki front – she had a wee speed wobble but shes back on track again. Still driving and working and physically she is doing really really well. Thriving almost but any long conversation tends to devolve into a long roundabout meander because she cant find the right words in the first sentence. LOL but you get used to that as well.. Again there is no support service for people in these early years which is when you have a chance to really make some positive changes and extend their good years – its really frustrating.

What did upset the apple cart was us having to step in and take custody of the eldest grandkids. 1 is a special guy, ADHD, Asperger’s, Autistic, dyspraxia etc. Put it this way he has OARS funding. This involved dangerous gang members, drugs, and police in 2 towns, Min of Ed, School, Min of Health, IRD, WINZ and Oranga Tamariki. Of course you need a family court lawyer at $280 and hour as well and the stress is horrendous not to mention the expense.. However its settling down a bit now and hes in a better place, doing better at school and above all happy. Pretty bloody frustrating.

Again – no support apart from the Min of ed and the school who have been brilliant. Police were also very good and kind to us. We were dealing with some fuck off scary unpredictable people… It’s a shame but we were going to be off to Canada mountain biking but – well that’s not happening now so we squandered some cash on a cheap SUV for Vicki – hey if shes getting monstered by gangbangers shes better off in a tank right?? (she freakin loves it too)

Its not all bad though – there are some seriously nice people out there. The Wellington MTB community have been amazing. Helping out taking Vicki and I on rides (its better to have extra supporters on some rides) and Tim at The Dirt Farm opened up the facility for us to get some drone footage of her riding before its too late. That happened at our darkest time so bless him.. It helped me turn her around again and made her feel like a queen…

So – in short. If you have prostate cancer ask many many questions and particularly around the worst case scenarios. You do have options…. If you have a loved one with dementia and its early on get checked and contact me – there ARE things you can do to slow it down. Remember 18 months ago she was given 3 to 7 years with only a portion of that being good years and shes doing amazing…

[caseye]

Hey you two, sounds to this not so young reasonably healthy shiet head that I'd better pull me socks up and do more, to maybe help my/ourselves and avoid some of the things that have come your way.
Always good to read what you've written mate, it's raw, out there and 100 % BS free.
Hang in there guys.
:niceone:

[Paul in NZ]

Hey you two, sounds to this not so young reasonably healthy shiet head that I'd better pull me socks up and do more, to maybe help my/ourselves and avoid some of the things that have come your way.
Always good to read what you've written mate, it's raw, out there and 100 % BS free.
Hang in there guys.
:niceone:

Life is what it is mate - you are always better off to engage with it and find some fun

[rastuscat]

Life is what it is mate - you are always better off to engage with it and find some fun

Play the cards you are dealt. Nobody gets a different set of cards just because they dont get an game-high straight first up.

[Paul in NZ]

Play the cards you are dealt. Nobody gets a different set of cards just because they dont get an game-high straight first up.

Yup... Life could always be worse and sometimes no matter how tough be humble and grateful for what you do have... Its easy to get so wound up about the bad stuff you forget your blessings... Vicki and I have been married now 39 years and if the last few are a bit tough we have still have more good years than most - its actually something to celebrate... Besides I sponsor the Special Childrens Christmas Party, 15th year this year and some people do it REALLY tough. We had the grandson with us and he was helping out and it was a lesson in humility for all of us. Plus - he has really different view on life coupled with a crazy sense of humour and somedays you just crack up at the stuff he says... I took him to Parliament as hes never been but we were a bit late for the last tour on a sunday so we went up the cable car.

We were in Parliament grounds and I was telling him we were a bit late and he thought that was OK because the Prime Minister was likely to be far too busy to see us on a sunday afternoon... LOL...

[pritch]

It doesn't rain but it pours. You've been having more than your share of problems. I know of others that have suddenly had to become parents again at short notice and that must turn everything upside down. If you wanna compare prostate war stories over a pint one day... :whistle:

Wishing you all the best.

[Paul in NZ]

If you wanna compare prostate war stories over a pint one day... :whistle:

Wishing you all the best.

Cheers - yeah no we would get kicked out LOL

[F5 Dave]

Yup... Life could always be worse and sometimes no matter how tough be humble and grateful for what you do have... Its easy to get so wound up about the bad stuff you forget your blessings... Vicki and I have been married now 39 years and if the last few are a bit tough we have still have more good years than most - its actually something to celebrate... Besides I sponsor the Special Childrens Christmas Party, 15th year this year and some people do it REALLY tough. We had the grandson with us and he was helping out and it was a lesson in humility for all of us. Plus - he has really different view on life coupled with a crazy sense of humour and somedays you just crack up at the stuff he says... I took him to Parliament as hes never been but we were a bit late for the last tour on a sunday so we went up the cable car.

We were in Parliament grounds and I was telling him we were a bit late and he thought that was OK because the Prime Minister was likely to be far too busy to see us on a sunday afternoon... LOL...
Well good on you, the one on Porirua yeah. I've been to that and it's a good thing for the kids without the neurotypicals judging.

[Paul in NZ]

Well good on you, the one on Porirua yeah. I've been to that and it's a good thing for the kids without the neurotypicals judging.

Yup that's the one.. It always humbles me and grounds me. My life is busy but others have a larger burden than I do...

[Paul in NZ]

Post lockdown update.....

Well personally I didnt suffer.. Well Vicki is an essential worker as am I... Her car (truck suv thingy) got sideswiped while she was working on day 2... Feck.. Theres my excess gone... Still it was a bargain so....

Oven failed on Day 5 - no worries - bench top and BBQ all good...

Shower started leaking after some one cleaned it... sigh..... Man it was clean....

Set tox box failed - no TV - Vf are dicks - spark put in fibre and all good...

Had a spare pc - hmm - SSD drives are super cheap and extra ram to edit video - shame W10 nuked the video card but eventually got it running (ish). Utterly befuddled by video editing tools


Vicki doing well... Getting a little befuddled now (sad) but still functional. I'm doing 90% cooking etc...

Grandson - lol - taught him to ride a bike... (BMX) then built him a small mtb around a dirt jumper and now on a proper bike. He managed 40km last saturday which for a kid with his disabilities is astonishing. He was well stuffed when we got home... I have another MTB to build up for him with a 1x drive as the other bike has waaay to many levers...

We will get back to the gym shortly (fat as a lord)

Long story short we are now well over 2 years into a 3 to 5 year sentence and shes still driving and working. My cancers OK (ish) and working on plan B and happiness so we are totally winning I reckon...

Not getting out on the Triumph much - need to work on that...

[240]

Don't know you mate but I fucken admire your guts and and positive outlook. God bless bro.

[caseye]

Hey Guys, good to hear that shit is still shit! but that neither of you are taking it lying down.
Keep smiling lad and Ladess.
Be down that ways in Sept, will pm ahead of then.
Take it easy out there, OK.

[tri boy]

Don't know you mate but I fucken admire your guts and and positive outlook. God bless bro.

Wot e said.

[Paul in NZ]

Well lockdowns been a bitch

I know - I will go mountain biking on my home tracks except I got bored and in a rush of blood to the head though I was Danny McCaskill - erm - I'm not. 3 weeks of bruised ribs followed by a chest infection, a covid 19 test from an alien in the medical centre car park (negative) and an inhaler.... GREAT...

Not all bad news - I got fatter - taught the disabled grandson to ride - worked my arse off, built up a better PC (yes I was shocked it worked too), edited a few videos and set up a youtube channel,,,

https://www.youtube.com/watch?v=5KDAQPbDGcU&t=159s

Pretty good really...

Well the fat as a lord bits not great....

[sugilite]

Full credit to you Paul! I liked the video, you should make more when you get a chance.
You and your family are an inspiration :yes:

[Paul in NZ]

Full credit to you Paul! I liked the video, you should make more when you get a chance.
You and your family are an inspiration :yes:

Oh you had to go encourage me....

This is the last good day we had before the current shit storm enveloped us...

https://www.youtube.com/watch?v=d9HmiqjVB7s

[sugilite]

:2thumbsup
Wow, that place has changed since I last saw it! Used to live in Ranui Heights....

[caseye]

Here I am wondering how I ca ge the ol Africa Twins motor out and make her a trail bike, that's amazing, you buggers are crazy, all that an No Mota!
Looks like fun, ride on.
:Playnice:

[Paul in NZ]

Hi Kiwibikers – just a quick update on life… Which frankly is complicated…

Vicki is still going – its getting hard now as she is gradually loosing her words. Of course there is zero support because we are too young, she still work/driving and apparently you cant self refer (you totally can) and yet even when you get the GP to refer they just pull another excuse out of their arses. If you don’t fit into their box you are screwed… So it will be yet another argument… I have found out we have several specialists in early onset rare dementias and my next mission is to find out why the litteral fuck where we not referred to these experts. The answer was ‘Oh you didn’t ask for a referral.” How the heck am I supposed to ask for a referral if I don’t know the service exists??

I have another table thumping appointment due in 2 weeks – its rather draining.

So yeah – its not great. Vicki bless her heart is still a sweetie but this disease is a stone cold killer and its hard watching her slipping away and this other person wandering around in her body. Cooking is largely beyond her now because she can’t draw the connections between the foods/uses and utensils etc and it could be dangerous. However, she loves to help me cook which is – erm – interesting. She also helped paint the bathroom which was more interesting as she paints with a great deal of enthusiasm and not a lot of skill. After she stepped into the paint tray the second time, I was thinking these disposable overalls were a great investment.

Karns thriving… I have signed him up to the local track and field club where he gets throws coaching. He even qualified for the regional secondary schools’ games and would have won the Discus but got a bit over excited and ran out the front of the circle (sigh).

Me? My health is declining from the stress and constant high energy output needed to keep a house with 2 neurologically challenged individuals on track. The practice nurse was a little concerned about my mental health so referred me to a counsellor – They called to make an appointment; the next free slot was 8 weeks away. The laugh did me good, so I declined – love him or loathe him Mike King is 100% right. The health systems a joke and I’d love to know where the money went… However I now have a plan of attack going forwards so with a little luck we might turn a corner soon (and hopefully not crash into another ditch)

The Triumph sits un loved or at least unused… Oh well….

[MD]

Ah shit that's a hard read Paul. Has it been 2 years since you first shared the news of Vicki's health. I lost my Dad in 2017 to dementia and as you say it's incredibly hard to watch the person you love, literally disappear a bit every day from their body. The instinct is to say, best wishes etc but we all know there is no happy ending with dementia.

Try and look after yourself as best you can Paul and cling to the happy memories.
Mark

[Paul in NZ]

Ah shit that's a hard read Paul. Has it been 2 years since you first shared the news of Vicki's health. I lost my Dad in 2017 to dementia and as you say it's incredibly hard to watch the person you love, literally disappear a bit every day from their body. The instinct is to say, best wishes etc but we all know there is no happy ending with dementia.

Try and look after yourself as best you can Paul and cling to the happy memories.
Mark

Thanks Mark -

Sorry to hear about your dad - its not fun at all.

We are 3 years on the journey since Dx and honestly Vicki is very heathy neck down so we are still having good days. My frustration is that there would be more of them if we got just a tiny bit of help. My frustration is more the health system than Vicki and as you know she is a delightful human being ( most of the time.... )

Cheers

[Dadpole]

That was hard to read.

I wish you all the best - and try to keep laughing at the absurdities of our health system. Don't let it get you down too much.

[caseye]

You are both champions, hard to read? yes. But like all of the others I read every word.
We love you guys and given a chance to do something practical we'd jump at it.
Take care out there and make the barstards pay! next week.
Lost a lot of mana for Mike King awhile back, got most of it back when he handed back that meaningless piece of tin and told the truth.
Hang in there mates.

[Paul in NZ]

Oh one other thing... I have been learning a LOT on this journey

If anyone finds themselves in a similar situation please reach out because even if I cant help I can certainly empathize

[merv]

Paul, sorry to hear how things have progressed. Love to you both.

[Diggers]

Hi Paul, I don't know you but that was a hard read. You're obviously a hard working absolute good bastard.

Keep it up mate.

[240]

God bless mate .It's so fucked up that resources are put into the wrong areas. This government are a pack of cunts like never seen before. .Let's fund the gangs for drug problems that the gangs import in the first place! We are now heading towards being a communist state. I hope you and the wife get the help you need .

[jellywrestler]

.Let's fund the gangs for drug problems .

seems the media has sucked you in well and truly, do you know the background of this?

[Paul in NZ]

God bless mate .It's so fucked up that resources are put into the wrong areas. This government are a pack of cunts like never seen before. .Let's fund the gangs for drug problems that the gangs import in the first place! We are now heading towards being a communist state. I hope you and the wife get the help you need .

It doesn’t work that way really and things have been in decline for decades. Its not political and if it was a communist system would provide everything - this is more a crazy capitalist system where you are thrown to the wolves and pay for everything yourself.. The Govt (regardless of political party) sets policy via the Ministry of Health and the DHB’s and NGO’s deliver the services. Policy wise we are covered (we are not the first to be in this boat) it’s the non medical admin team that was keeping us out of the system… Effectively administrators making clinical decisions! The funds are there but the DHB’s are the ones that prioritise the system…

By way of an update…

We finally got our assessment. The guy couldn’t have been nicer and apologized for the run around which was interesting. I basically had threatened them with the health and Disability Commission and the MoH both of whom I had been in contact with and both told me that a refusal to do an assessment on someone with a Dx was tantamount to neglect…

Thus far we have not heard back (week and a half) and even if we are successful its simply access to a budget and we will need to find the career (sigh). The main benefit to us is that we are now in the system…

Vicki keeps on being amazing. Shes happy and cheerful most of the time but of course she has me to run around after her.

Her 64th birthday ride is here

https://www.youtube.com/watch?v=wgU5fxxgki0&t=514s

[Paul in NZ]

Well fuck

These people have a special talent for suffering

Yes - we won the right to 2 days a week support at - $72 a day

Careers are like $50 an hour plus travel

LOL - yeah we will muck on ourselves thanks. The system knows this - its just another way of keeping the costs down

[F5 Dave]

Can you Save it up for some respite for yourself? Has always been out of step with pay scales.

[Paul in NZ]

Can you Save it up for some respite for yourself? Has always been out of step with pay scales.

Nah - fuck em all

I've got this...