Wednesday, September 28, 2011

Thanks to John for his latest post. There is a new group starting up that some of our Melbourne readers might be interested in, please see John's reference to this.

Thanks to all of you my weekly post now goes out to 202 people as of yesterday.
I normally like to mark the occasion with something different as I did when I hit the 100 mark, Simon and I developed the “Disability Maze” illustration which is still on my site and gets a lot of interest.
Anyway a big thank you for your support.
The Victorian Auditors General Office report on “Individualised Funding for Disability Services” was released on 14th September.
It has an interesting balance of positive evidence from people whose lives are really benefiting along with concerns that the Department of Human Services needs greater assurance that funds are being spent appropriately.
As someone who has been closely involved over the past seven years as a recipient of funding and an Advocate I know how valuable it is to learn from others as peers who are also navigating this new way of funding.
Introducing – Peer Support to Buy Support – Melbourne
Its opportunity for people and families to get together & talk about a range of disability funding challenges whilst sharing with each other the good and the bad experiences.

This group is not connected with any organisation is purely made up of people who are happy to meet up and thrash out, (nicely) topics such as
What’s important when I’m preparing to have my funding plan reviewed?
Go to the Peer Support To Buy Support Melbourne site that has been set up using a great on-line resource known as “Meet up” to get details about the first meeting scheduled for Monday, 24th October 2011 at 6 PM
It’s important that I clarify that this particular initiative is an idea that has been preventing me from having a good sleep for ages and not linked to my advocacy role with VALID.
Peer Support to Buy Support Get Together

Tuesday, September 13, 2011

Put Your Best Stick Forward


Today we welcome new guest blogger John Mckenna talking about some sticky business, he writes on his blog here: http://www.johnmckenna.com.au/

Check the height of that walking stick.


It frustrates me when I notice a great number of seniors using a stick that is too long for them.
It stands out a mile when you see a senior person using a stick and there elbow is almost at right angles.

Ideally when a person first gets a stick they are assessed by a health professional, however this often doesn’t happen.


A common scenario is that they are given a stick along with the advice from a well meaning friend “Here use of this, it will keep you from falling over and help you to stand up straight”
Yes of course a stick can be of great benefit, but only if it is the right height.

Things to consider when getting the right height for the person using the walking stick.

If purchasing a stick for the first time from a pharmacy, go for a stroll in the shop using their height adjustable stick.


Now you can determine if this stick is going to assist whilst also determining the correct height.
Once you have the height right then select your stick.


If just wanting to check the height of your existing stick try this as a guide.
Hold the stick with a handle on the ground beside you then stand to attention.
Using 2 cm above your wrist bone as a guide can give you a good indication of the correct height.
Your elbow should only be slightly bent.

 It’s also important to realise people use walking sticks for different reasons, so ultimately do seek advice from a health professional.




Getting your walking stick height right

Thursday, September 8, 2011

Cannula Crazies; Sydney bar delivers oxygen to suckers

Today we'd like to welcome Leela, a new guest blogger for us! She has a blog called The Heart-Lung Thing blog which you can check out here: 


I have always been pathetically self-conscious when it comes to using supplemental oxygen in public.

Pulmonary Hypertension patients are often prescribed the stuff to ward off the effects of long-term oxygen depletion. Some people take it just while sleeping, others (like me) also use it during the day if the weather is a bit humid or if they’ve ‘overdone it’ by walking up a few too many flights of stairs. Some people can’t breathe without it, and are on it 24/7.

Years ago, when the oxygen concentrator was first delivered to my uni student share-house, I had a difficult time accepting its presence in my life.

Its crimes were these:
When switched on it emitted ear-drum destroying beeps, then proceeded to rattle, pant, and heave like an asthmatic labrador. It also had the lovely brand name of ‘Invacare’. As I was in complete denial over my illness at this stage, I considered myself neither an invalid or in need of ‘care’, and thus failed to see how this machine could possibly be of any benefit to me.

Its beige, plastic, rectangular shape was weird and creepy. It sat in the corner of my room like an uninvited guest – a bland-faced hospital bureaucrat perhaps, who would obsessively tidy up the clutter on my desk, then insist on listening to a program on ABC Radio National about dahlia cultivation.

It came with yards of coiled rubber tubing, and had a metal attachment called a ‘nipple’. It also had a thing called a ‘nasal cannula’ that was supposed to go up my nose. Ick.
Most unforgivably, it didn’t even match my furniture. How was I supposed to encourage a creative yet home-like aesthetic with something that looked like a dalek camped out in my bedroom?

If I ever had to wear the nasal thing in public (say answering the door, or hanging laundry on the line), people tended to avoid looking me in the eye. This is because the most common sight of someone hooked up to oxygen is when they are an actor dying of cancer on a telemovie. Me wearing one turned me into Scary Cancer Lady.

It took me months, and a bout of airway restricting influenza, for me to start using it properly. Stupid, I know.

And, I recently found out, highly unnecessary. Because concentrated oxygen has suddenly become the very latest hip and decidedly cool thing to inhale.

An ‘oxygen bar’ has recently opened up in Sydney’s Harbourside Shopping Centre. Here, by the darkly glimmering waters of Darling Harbour,  you can hook your stylish self up to a stylish nasal cannula, and enjoy stylish 90 % oxygen for a dollar a minute.

The ‘bar’ which is in the middle of a shopping mall, is all neon glowing surfaces, touch screens, and shapely white stools, and is decorated with a back-lit blown-up photo of blue sky and green grass. Evocative, I presume, of health and vitality.

Basically, it’s pretty tacky. It looks like a cross between a food-court juice bar and a nail salon. And then of-course there is the array of colour-coded bubbling oxygen flavours that make it look like the Slurpie section of your local Seven Eleven.

While experts such as a respiratory specialist from the Australian Lung Foundation, and two scientists from the University of Technology, Sydney, say that oxygen for healthy people is not only pointless but dangerous, the bar owner insists upon its health benefits.

Taking 90 % oxygen (most air that we breathe is only at 21%) is, apparently, a great way to relax, and speeds flu recovery. And if you’re up all night popping pills and hitting the clubs, then it’s a terrific hangover cure so you’re all perky for the seven am boardroom meeting.

So for years, I have been self-consciously hiding my diseased, cannula-wearing, self in my bedroom, while being hooked up to oxygen was what the cool kids were doing all along.
Worse still, now I puff around town with blue lips, unable to afford the portable oxygen that these days I would wear no matter how self-conscious I’d feel, while the rich and stupid sit in shopping malls sucking down a substance which does nothing for them.

It’s a bit ironic if you think about it.

I suppose you could argue that the same irony exists in many other consumer items. Food that one doesn’t need, for example. Only this morning I bought a pink glazed donut and guzzled half of it while driving home from an appointment.

It was an entirely unnecessary act of crass consumerism. Someone out there in the teeming hungry world would do wonders on that hefty wad of saturated fat and strawberry-flavouring.
But can oxygen be classed as a ‘consumer item’? Should it be? Isn’t taking pure oxygen for a hangover cure the same as having a blood transfusion for a health kick while someone else bleeds out in an emergency room for lack of adequate blood supplies?

Isn’t using oxygen for ‘a bit of a boost’ trivialising the terribly serious world of Medicine and Illness? Or is it a good thing; does it normalise and bring oxygen use out into the open?
I’m not really sure.

The only thing I am sure of, is that I won’t be eating any more donuts – at least not in public. How embarrassingly uncool of me. The really hip trendy people only eat artisan-produced gluten free organic confectionery made locally or in Belgium. From now on, public consumption of donuts will only occur when they are available intravenously in bars.