Shit happens ….. and then?

oops, politically incorrect, crude, unprofessional . Managing our bowel movements is something you and I attend to without much thought or planning …  but for the morning after a very spicy meal or a night on the ‘turps’ (ie; drinking too much alcohol – for you non Aussies)

But a huge number of our community it’s a daily challenge.  A taboo topic …. we see people with spinal cord injuries and immediately notice their obvious disabilities  – they can’t walk, some can only move their head.  Rarely do we consider that they have no feeling below the point of their injury.  Then there are the elderly in nursing homes…more and more of us. Many suffer the same indignity.

So what,  so bad, so sad, who gives a damn….

Well may you ask. The afflicted do. Their carers do and so do those wishing to research how better to manage this issue and implement management plans for individuals.

But like many other very real (non vote winning) issues confronting our disability sector – there is no funding to mop up the issues ….sorry….tackle them.

Last night I had the great privilege to attend the launch of a new Health Projects & Research Fund established for the very purpose of diving head long into helping our disability sector undertake critical research.

A humbling experience. The fund was launched by Nick Rushworth the Executive officer of Brain Injury Australia.

Nick Rushworth

Nick Rushworth

Suffering a serious brain injury in a cycling accident years ago today he is an advocate for those suffering brain injury.  The statistics are frightening – I set a few out below.  But let me snatch a few quotes from his speech.  Speaking of his opportunity to speak at the launch, not as a professional treating the injured, but as a victim and advocate Nick said

“Happily, it also allows me to take one of my twin hobbyhorses – he’s called imagination, the other’s called hope – to take imagination for a canter. Because, I reckon if I’ve learnt ANYTHING from my time in this job, it’s that anyone involved in the “human services” business – my business and, my guess is, many of your businesses, certainly the brain injury RESEARCH business – anyone involved in these businesses has to at least try and transplant themselves, in imagination, into something of the life circumstances of their client, their customer, their research subject, to at least try and enter into the world from whence they come, as both a a starting point and a first principle.”

A little later when recounting how quickly (relatively) he recovered he made an observation that struck an accord with me.

“Which makes it all sound like a bit of a diversion, an…escapade (and here I am tonight…dining out, yet again, on my story). I’m sure I thought of myself as…lucky. My thinking’s…matured since then. I’ve never believed in fate. Nowadays, I don’t much believe in LUCK either – let alone, as I can remember a famous rugby league coach once saying; that HIS team, HIS players “make their own luck”. I’ve come to believe, instead, in systems, in structures – whether they’re governments, their publicly-funded services, the economies, the businesses that those services depend on for money. And I believe in communities, in families. Don’t mistake me, I’m sure an individual’s – whatever you choose to call it – their drive, their determination are still crucial, perhaps indispensable, to recovery from any injury, any adversity”

Following the theme of the need for family and community Nick said

“I’m intrigued – as someone working in disability advocacy from a background in journalism – by our preferences (insofar as the media mostly serves them) by our preference for stock narratives about individuals “overcoming disability” – a bit like “beating” cancer – and by the relentless parade of what some of my colleagues call “super-crips” – “super-cripples”. Call me quaint but in a broader culture of creeping competitive individualism – of sink or swim, with some safety nets – I just don’t reckon that society’s capacity for “overcoming”, its quantum of resilience (of rebounding from adverse events, from trauma) gets shared around equally. Between individuals, between communities.”

Thank you Nick - Works I'm sure will resonate with many

Thank you Nick – Words I’m sure will resonate with many

The funds first grant was also made – to Royal Rehab in Ryde to conduct critical research into … you guessed it ….the management of bowel dysfunction.

Genevieve Henderson and Associate Professor Pryor

Genevieve Henderson and Associate Professor Pryor

And why was I there.  I’m proud to proclaim that the fund has been established and is funded by Slater and Gordon….”those disreputable lawyers who do give a damn”.  And of course, pay my salary.

Aligned with my personal and professional crusade for better planning …for everyone, this project is exactly on target…researching to help produce better outcomes for the disadvantaged.

This is not a work-sponsored blog.  They wouldn’t permit me to be be so brash or loose with my language… but in my own time I can say I’m proud to be part of their lot …. in any terms I choose.

Well done team!

I’m a specialist estate planning lawyer + professional traveller + keen photographer + political observer. I like to share my experiences across all four devotions – often as a mixed lot. If you like this blog please subscribe for more.  Recommend my blog to others.  If you have a comment or request – bring it on.

Some interesting stats provided by Nick

  • Falls are the leading cause of injury admissions to Australian hospitals Falls are now also the leading cause of traumatic brain injury throughout the developed world accounting for 2 out of 5 hospitalisations in Australia in 2004-2005
  • The highest growing sector of the Australian population suffering brain injury – those over 85 years
  • 727,000 Australians have a brain injury – Australian Bureau of Statistics ( a conservative  number) But only 21,000 of those are on disability support pension, only 16,000 use  a National Disability Agreement – funded service

Do you want a blog that speaks to you – what do you want? Ask me.

I’m a specialist estate planning lawyer + professional traveller + keen photographer + political observer. I like to share my experiences across all four devotions – often as a mixed lot. If you like this blog please subscribe for more.  If you have a comment or request – bring it on.

Whilst you’re here please enjoy a few of my snaps and recommend my blog to others. No prizes…just surprises.

Exploring Ningaloo Reef

Exploring Ningaloo Reef

Balloning in Egypt - Enjoying the beauty

Balloning in Egypt – Enjoying the beauty

Still in Egypt - Arable meets arid - life's contrasts

Still in Egypt – Arable meets arid – life’s contrasts

Victoria Falls - Zambia Sharing a moment with my son Mark

Victoria Falls – Zambia
Sharing a moment with my son Mark

..... and swimming with Mark in Antarctica....cold!

….. and swimming with Mark in Antarctica….cold!

Observing observations

Observing observations

Keeping the hot air where it belongs

Keeping the hot air where it belongs

Thank you to the copyright owner - home truths in a snapshot

Thank you to the copyright owner – home truths in a snapshot

Communicating serious estate planning messages whilst staying grounded.

My serious face with my lawyers uniform on.

My serious face with my lawyer’s uniform on

....and always shooting for the stars - especially when in Mongolia

….and always shooting for the stars – especially when in Mongolia

And some times just because its there

And some times just because its there

colour glorious colour

colour glorious colour

and always a word of advice...never too old or too young to listen.....or learn

and always a word of advice…never too old or too young to listen…..or learn


Crisis for children with disabilities – read if you dare

First world health care means longer lives for the most vulnerable in our community.

Our most vulnerable now outlive their parents.

Who cares? Too few it seems.

Think about it – apart from accommodation provided by parents, where do our cognitively disabled live?

With  other family ?… sadly, but often for good reason, no!

There is no federal funding scheme for accommodation. State  governments are withdrawing what little they did provide.

Government service providers will end up delivering services to their clients who live in parks, on footpaths and under bridges along with their homeless buddies.  There is no exaggeration here.

I’ll happily apologize if anyone can point to the flaw in my prediction.

Solution: have wealthy parents.  Don’t we all wish !

I invite you to read the SMH article at the following link. It highlights a looming crisis in the disability sector, but stops short of throwing a light on the elephant in the room….. accommodation once the aging carers can care no longer.

Maybe it’s my nature and training , but I am a firm believer in planning.  As you’ll see in the article, there is a looming crisis and it seems little or no planning to deal with it.

Link here

ABC article

Rod Cunich preferred (2)

I’m a specialist estate planning lawyer + professional traveller + keen photographer + political observer. I like to share my experiences across all four devotions – often as a mixed lot. If you like this blog please subscribe for more.


Death with dignity

Do you leave the best morsel of baked potato to last – to savour it? Put off the pleasure to a time you can enjoy it most. Build the suspense. Build the expectation of something special. Sacrifice the present, the moment, in anticipation of the future. Lose the joy of each moment along the way….. only to find your dream has gone cold and soggy.

I put off the joy of blogging because it’s my self-treat – I wait for a moment when I’m relaxed and have time. The result – blogs that are few and far between. Or forced and fake.

I have a mentor who constantly reminds me that ….. now is good.

So I’m in a hotel room, it’s late, I’m exhausted after an exhilarating day-long workshop. I’m too wound up to sleep so I visit Facebook. Maybe I can see what my kids are up to?Silence on that front….they know I check!

But I spot a post. I’d like to share it with you, and ask – will we ever have this choice here in Australia, or do we have to keep our passports and US visa current?

…so here it is…

Frank Somerville KTVU
This is Brittany Maynard.
image
She is 29 years old.
And she has only 25 days left to live.
On November 1st, Brittany plans to die.

She says:
“I will die upstairs in my bedroom.
I will pass peacefully with some music that I like in the background. “

Brittany is suffering from stage 4 Brain Cancer.
She was married late last year.
Shortly after that she started having headaches.

In January, doctors told her she had stage 2 Brain Cancer.
They gave her 3-10 years to live.

But then in April, the news got even worse.
Her cancer was now stage 4.
(The worst it can get)
Doctors told her she now only had 6 months to live.

“I wish there was a cure for my disease, but there’s not.”

Brittany was living in the Bay Area.
But after learning she was going to die soon, she and her family moved to Portland, Oregon.

The reason: Oregon has a “Death with Dignity” law.
That means Brittany can choose when to end her life, instead of suffering.

Brittany says:
“I can’t even tell you the relief that provides me.
There is not a cell in my body that is suicidal or that wants to die.
(But) my Glioblastoma is going to kill me and it’s a terrible, terrible way to die.
Being able to choose to go with dignity is less terrifying.”

So Brittany has picked November 1st to die:

“I really wanted to celebrate my husband’s birthday, which is October 30.
I’m getting sicker, dealing with more pain and seizures and difficulties so I just selected it.”

She will use medication prescribed by her doctor.

“I plan to be surrounded by my immediate family, my mother, my step-father, my husband, and my best friend.”

During her last days, Brittany has been traveling.
She loves the outdoors.
She’s gone to Yellowstone Park and Alaska.
She hopes to make it to the Grand Canyon, but time is running out.

Brittany has made a video about her life and impending death.
It’s six minutes long.
I watched it twice.
I broke down both times.
It’s heartbreaking.
But at the same time there is something so inspiring about her.
She’s very matter of fact and very direct.
Here’s a link if you’d like to see it.
http://www.thebrittanyfund.org/

At the end of the video, Brittany has a message for everyone:

“Make sure you’re not missing out.
Seize the day.
What do you care about?
What matters?
Pursue that.
Forget the rest.”

I’m going to write that down and put it on my desk at work.
I want to see her words every day.

And for the sake of this post, I will assume that if you want to hit “like” it means you have Brittany in your thoughts.

Some quotes courtesy People Magazine
Timeline Photos

Rod Cunich preferred (2)

I’m a specialist estate planning lawyer + professional traveller + keen photographer + political observer. I like to share my experiences across all four devotions – often as a mixed lot. If you like this blog please subscribe for more.

PS (to my mentor) Tony, back on the horse – even if it’s borrowed