Study of PWS Residences in UK and USA by Linda Thornton (PWSA NZ) 1999

 In 1999 I was awarded a Winston Churchill Scholarship to study the residential options available in USA and UK.  At the end of this, I wrote my report.  You can see it here.

It is now 2024 and things have changed. A lot. In the 1980s much was done to investigate to give the best possible lifestyle to people with mental impairment, various syndromes, and a lot of too-hard-to-handle designates who were living in huge mental hospital type accommodation.  So with the breakdown of large institutions came an upsurge of smaller residential options.  Some good, some not so good.  And very few catered for those with PWS.  You see, putting people with PWS into a group home (no more than 5 residents) meant  putting rules and regulations around security of food, security of personal items, security of money etc was now impinging against the other 4 residents.  And, in spite of all the good intentions and all the changes in funding, separating people with PWS into mixed residences was failing.  And so is the case with my daughter.  

Quick dash to Melbourne

 In April 2021 the borders between Aus and NZ were opened.  We took advantage of this and booked ourselves on one of the first Qantas flights out of Wellington to Melbourne.  We wore masks on the plane, but didn't seem to wear masks anywhere else.  We surprised the grandchildren by knocking on the door around 7pm - what a reaction from them!!

We had a quiet time, not going anywhere else but doing a few day trips.  We went up Mount Macedon and to an amazing garden built by two guys with fantastic foresight.  This is my most favourite place.  

Hip 2 Op

 Exactly to the month, 10 years ago (24 July 2012), I had my first hip operation and I've just read the blog describing it and the recovery in some detail.  A fortnight ago, 5 July 2022, I had the second hip done.  It followed pretty much exactly the same procedure and outcome as detailed in my earlier blog.  The funny thing is, the way I remember the first hip op was that it was absolutely painless, hassle-less, with a smooth, non-eventful recovery.  I kept telling everyone that this second op would be the same - painless with a quick recovery.  Weird how the mind plays tricks.

This operation, with a different surgeon, has been painful and slow - and I've kept harping on how good the first hip was.  I'm so glad I documented that because I've just been lying to myself and anyone else who would listen.  Oops.  

We're now in town (Masterton), having shifted from the country about 4 years ago.  Settling in was fairly easy although to begin with I missed the country very much.  Our new house is lovely, catches all the sun, has been completely re-dressed with new carpet and paintwork inside and has loads of room and I love it.  So recovering in this home has been easy (if painful) with separate bedrooms and bathrooms, a 'media' room for the tv with a highbacked and high-seated chair for those in hip recovery.  I have to say, Pip has had the benefit of the high-seated chair both this year and last as she has also had both hips done.  It's bloody wonderful that we have the benefit of not only advanced surgery, but insurance as well.  

Lockdown AGAIN!

 September 2021

Hard to bloody believe, but here we are in lockdown again!  One person in Auckland responsibly had a test as he was feeling symptomatic and it was positive for the latest Delta variant.  Jacinda slapped the whole country into Lockdown 4 (which was poo-poohed by the rest of the world) but an action which has done us well in the past.  We're in Masterton this time around and have a much better choice of supermarkets, chemists etc.  It's not all bad, I guess.  The inoculation for covid is now available and oldies and the disadvantaged are able to get first dibs. 

Trying to plan ahead for our 50th wedding anniversary in January 2022, trying to work out whether Lucy and kids are able to come out then, or in February, and everything else is up in limbo.  That's what this pandemic has done to us all.  Put us into a state of limbo.  In some ways it's not a bad thing.  In others, it makes you feel helpless and powerless.  All the freedom we've come to think of as our right, has been curtailed.  No social events, no dining out, certainly no travel - and yet, people think and work outside the square.  Never before have there been so many Kiwi road trips taken by us all; exploring areas not been to, marvelling over the lack of tourists and having the places all to ourselves.    Once the lockdown had been lifted and we could at least travel regionally, that's pretty much what the whole of New Zealand started to do.  We went to New Plymouth, Rotorua, Waiheke Island with Anne & Tim and Viv & Alec.  These three-day breaks were really great.  Each couple took a turn to cook a meal and provide breakfast - lunch was eaten out.  We had a lot of laughs.

Lockdown

Here in New Zealand we are at Stage 4 of the Coronovirus pandemic.  Our government has ordered us to go home and stay home.  We may go out to the supermarket for food, to the chemist for prescriptions and medication, or to the vet for our pets' needs.  Nothing more.  We may take short exercise breaks and walk around the block, but we may not gather with anyone outside our own 'bubble'.  This way we will extend the virus's curve, lessen the pressure on hospitals and hopefully beat the outbreak here.  At this stage, 1106 people have tested for positive; there has been 1 death, and there are 13 people in hospital, 3 in ICU, one critical.

It's certainly a strange time and quite unusual to experience such a total lockdown, but we are sticking to the rules and most of us are coping.  We are lucky to have such great technology to be able to communicate with those outside our bubble and to stay in touch.

I have decided to write one haiku a day as a small discipline, so here we go!


Day 1:  26 March 2020

Just five syllables

Corona virus lockdown
Turn the key, Keep Out

Day 2:

Very quiet here
Voices drift across paddocks. 
Should I play bagpipes?

Day 3:

Sharp knife, unlatch gate,
quickly slice white mushroom heads.
Neighbours watching me

Day 4:

Gloved and distancing
Adam delivers the food
No wine, one apple.

Day 5

Monday, the week starts
Is time going to  matter?
Each day is the same

Day 6

Lots of lockdown jokes

 people enjoying their time
the experience

Day 7
Local store has wine
and rather sad old veges
I really want fresh fruit

Day 8

Autumn is perfect
Clear days, warm sunshine; I think

"one last bracing swim?"

Day 9

Covid deaths rising 

Trump says over by Easter
Bullshit, Trump, bullshit

Day 10
The lake is perfect
No fishing,  and no boating,
Just isolation

Day 11
An outing for food
Fresh vegetables - silver beet
I love it so much!

Day 12
My grandparents’ lives,
Their lockdowns, war, and hardships
with no screentime help

Day 13

Boredom has set in

Unsettled, restless, endless

Don't moan! But I do.

Oddly enough, I didn't carry on.  Lockdown lasted 5 weeks.  We spent these at the bach and brought Francie up with us.  It was an odd time, knowing nothing about the virus, not knowing how long we would be in lockdown, not knowing if you caught it, would you die?  Every day seemed to be another 'first'.  We had weekly cocktails with Anne & Tim, Viv & Alex.  There were an extraordinary number of jokes doing the rounds of social media, and an extraordinary number of people going to great lengths to entertain - opera singers from balconies singing for their neighbourhood - and to help others.  The front-line workers, ambulance, doctors, nurses, volunteers, were phenomenal.  People seemed to rise to the occasion and unite.  

Various countries became leaders in the corona virus death stats.  Trump pronouncing it would be over by Easter and that it was just like the flu.  He called it the China virus and refused to wear or advise wearing a mask.  Finally the stupid bastard caught Covid and was rushed to hospital.  He survived and became a martyr to his cause.  There has been so much written about Trump that I'm not going to repeat the stupidity or irrationality of the pompous little prick.  Save to say that he was voted out in November and Jo Biden is now the President elect.  Trump continues to say the election was rigged.  Of course he does.

Enough already.  Christmas is looming and it will be without the Melbourne team, and the Wellington team is going north with the Suggate family.  Francie, Nick and I will be contributing to Anne, Tim and Charles' BBQ up at Katy's new house in Taupo.  Katy et al are with his parents.

January 2019

"And so we start at the beginning of another year.  I am in a frantically bad space.  My mood is constantly irritable and the list of things that I hate is endless.  But most of all I hate and loathe PWS.  It disgusts me, it angers me..."

I started that blog at the beginning of 2019.  I didn't complete it and I didn't come back to blogging until the end of this year.  It's hard to pick up from where I left off, but I recognise the feelings which have come and gone all year and will remain for the rest of my life.   This year was no worse than the one before it, or the other 36 years living alongside Prader-Willi syndrome except that I had another significant birthday and I have finally retired from working for the International PWS Organisation.

I never finished this blog and now it's nearing the end of 2020 possibly the worst year in this century, at least so far.  Being in a bad space was to become the norm for 2019 and the realisation that I had to free myself from some of the bondage that was pressing me under resulted in my retirement from IPWSO in November of 2019.  IPWSO had become my life, just as the New Zealand PWS Association had been.  But this time, it was so much easier to let go; the timing was exactly right.  My enthusiasm had waned and continued to do so, my empathy was sadly lacking and although I knew I was the perfect person for distressed parents to contact, it was becoming difficult to drum up the necessary energy to take on yet another burden with unsolvable problems.  So the time was right.  The run-up to Christmas was so much easier and although it seemed as though I was no longer important or needed, those feelings lasted just a few days before the joy of freedom to do what I pleased, to sleep in, to attend no more early morning or late night conference calls, no more Minutes, no more answering questions, sending out requests for donations (really hated that part), and no more being obliged to anyone.

It's a year later and although 2020 has been a shit year for the world, it has allowed some breathing space, some quiet times with Francie and some thought for re-direction.  As it happens, during 2020 I took up sketching and water-colouring and continued, when possible, with pottery.  At least NZ managed to get through the Covid attack in a better state than most of the world.

Hello, I'm Danny

“Hello,” he said, “I’m Danny.”  I’d seen him as I’d walked into the store and noticed him looking at me, but not taken too much notice.  People often look at me when I’m out with my daughter.  When she was very young, it was her copper-coloured hair that attracted people.  Later, it was her behaviour that drew attention and her insistent demands for whatever she decided she wanted, and wasn’t allowed.  Nowadays it’s because of her size.  I hate to admit it, but her weight has gone out of control this year and I’m panicking. 

But, back to Danny.  He held out his hand, and, since it is the season of Goodwill, I shook it and smiled.  “I’m the manager here,” he continued. 

“Oh,”  I said, thinking that new managers now liked to introduce themselves to their customers, being as it was, the season of Goodwill.  “Are you new here?”

“No, I’m not.  And this is my floor manager,” he continued, indicating the person standing next to him.  “We have a video of this young person,” indicating my daughter, “stealing some body lotion from the shop.”

The blood drained from my face as I thought, Oh God, here we go again.  Danny produced his phone and asked if I’d like to see the store video.  I agreed, as my daughter was protesting her innocence and things would certainly continue to escalate unless we could settle this one way or another.  “I recognised her, and you, when you came into the store.  The video is from March, this year, but, look “he pointed, “there you both are coming into the store and there you are,” indicating to my daughter,” taking the body lotion out of its box, putting the box back, and the bottle of lotion down your front.”

It was undeniable.  My daughter started blustering, “I don’t remember doing that, I have no memory of doing that.”

I felt humiliated, shocked, angry, and ultimately, surprised that she had done this.  Usually if she wants something, she sneaks it into my shopping trolley and by the time we get to the check-out I generally pay.  No need to shoplift.  So all I could do was to agree to pay for the item, and thank him for not trespassing both of us. 

I crawled out of the supermarket on my hands and knees – figuratively, not literally – and prayed for strength.  This was only day one of a two-week Christmas holiday…