Jessica at Cafe Church at Hope Uniting Church.

Somewhere in the muddle of posts and Facebook I have been expressing my concern that my Epilepsy has worsened to the point where it is difficult to remain upright.

Our Nelune Comprehensive Cancer Centre (NCCC)

After a day in the E.D. at Prince of Wales Hospital Randwick a S.M.O. did a full blood count and then suggested a Lamotrigine level be done. It was toxic at 18 and my Calcium was also too high.

Toxicity produces most of the symptoms I have experienced and the Calcium may also induce seizures. My Dr. a formidable younger woman swore her way through the favours she had to call in and we are hoping for a place in the Epilepsy Clinic at the POW.

Meanwhile, Jessica has had the first of many nerve conduction tests on her bladder and has had to cut out practically everything except water. Even those things she can eat have been barred by other clinics.

My Clonazepam has been increased to 1 mg per morning and night and the Calcium ditched. I have yet to see how this stirs the pudding.

I feel more like 70 than 65.

Independent Living Expo.


On the 8th Jessica and me went along to Olympic Park for the biennial Independent Living Exposition. Being held there and a journey fraught with stress for Jessica we hired our regular Accessible Cabbie and had a fairly nice journey both there and back.



There are many different types of wheelchairs depending upon the level of disability or desired use for the chair. There was everything from walkers and toddlers wheelchairs, through to 4 wheel independent suspension+4 motors for Farmers. We had stair climbers and standing chairs for golf, one shaped like a peddle car foe a child. Tricycles, Racing Bikes. Off road vehicles. Finally, very expensive vehicles adapted for wheelchair drivers.

In the first photograph Jessica is trying the controls of a vehicle, earlier she had dropped her age by 15 years and crossed gender again to trial the 4 wheel drive independent suspension demonstration track. Then when she let on that she was female they also had to allow women to trial the trail.

The display I found the most humorous was that of the skeleton demonstrating passive exercise, there are two photos of it in the gallery, one for arm and the other for legs. And a few stuffed bears and a doll found their way into the action.

A public consultation workshop to help shape disability policy for 2020 and beyond

This past Monday I went with a friend to attend the Consultation regarding the formation of a National Disibility Strategy for beyond 2020.

This forum was focused more on the NDIS, National Disibility Insurance Scheme, than general disibility policies therefore the focus was on those under the age of 65. The conference focused on ways to improve this scheme however those in the over 65 bracket heard nothing about My Aged Care.

Since the inception of the NDIS those people with disabilities over the age of 65 have now been aligned with AGE/HEALTH without disibility being a major factor in the Clare Plackages, if indeed they manage to receive one. Many of those on the cusp of being classified as old lost the small packages they had and where unable to replace these with NDIS packages because upon reaching 65 they would be too old for the NDIS anyway.

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Here is the advanced information for this event

A public consultation workshop to help shape disability policy for 2020 and beyond.

About this Event

The National Disability Strategy 2010-2020 is Australia’s framework for creating a more inclusive society that enables people with disability to fulfil their potential as equal citizens.

At the end of 2020 the National Disability Strategy will end and governments across Australia are working together to develop a new strategy for beyond 2020. We need to make sure a new strategy reflects the changing policy environment and builds on opportunities available today as well as what may emerge over the next decade.

From April, the Australian community is invited to take part in national consultation to shape the future of disability policy for 2020 and beyond.

There will be face-to-face and online workshops held in each state and territory. At the workshops you can share your experiences and help shape the next strategy as it is vital people with disability have a leading role in modernising the policies and programs that affect them.

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Rydges Parramatta

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Empty Conference Room

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Session two – when we had the opportunity to add our thoughts to the boards.

Department of Social Security Consultation to develop a National Disibility Strategy for beyond 2020

Pituitary Tumour saying hello

Life in between

Since our Pituitary tumour appeared to have been tamed in 2003, I say our since to a great degree it has governed our lives since we first met in 1998.

Jessica’s Stroke in January 2013 saw the return of enough eyesight to begin Woodturning,again, after many years. The stroke wiggled itself into our lives under the guise of a disturbance in her vision. We had made her way into the Hospital in Randwick to see the Eye registra only to have the diagnosis STROKE. It was in the Right Visul Cortex and so caused no physical disturbance other than almost 20 20 vision in that part of the eye that could see anything at all.

October of 2017 we were visited by a little visitor by the name of Heart Attack. With S.C.A.D which we will mention later.


Which should come first? Since our Heart Attack Jessica’s sight has returned to less than it was before and we now have a date for a Corneal transplant on April 18th.


Las week we had another M.R.I., called for by the Eye Specialist who will be doing the surgery. Just in the case that the Tumour was active again and was responsible for the recent reoccurence in our loss of vision.

We called our usual wheelchair cabbie and set off early to SVHospel in Darlinghurst where recurring M.R.I.s are free. Taking the DVD home with us we popped it into the computer to puzzle it out. From what we can see the Tumour may be slightly larger, though not large enough to reflect major sympotoms such as lactating or high Pregosterone levels. We shall not know for sure until we see the Specialist.

M.R.I. Machine

Dr. Raymond Damadian, a physician and scientist, toiled for years trying to produce a machine that could noninvasively scan the body with the use of magnets. Along with some graduate students, he constructed a superconducting magnet and fashioned a coil of antenna wires. Since no one wanted to be the first one in this contraption, Damadian volunteered to be the first patientDr. Raymond Damadian, a physician and scientist, toiled for years trying to produce a machine that could noninvasively scan the body with the use of magnets. Along with some graduate students, he constructed a superconducting magnet and fashioned a coil of antenna wires. Since no one wanted to be the first one in this contraption, Damadian volunteered to be the first patient…[…]


Nuclear Medicine-a walk in the Park

The Main Feature

My day in the MRA bomb, bomb, well I was one after Andrew and I left there for a walk in Centennial Park and Fox Studios while the isotope highlighted my brackey bones. Andrew was with me and as usual I was nervous and made a fuss and whined about the lack of wheelchair transport after certain hours in the afternoon.After the isotope was in place we were sent away for 4 hours for it to wriggle about before the main feature – the MRIMRI-Diagnostics Usually I go in head first – when they check my brain tumour but on this occasion it was feet first for a bone scan of my legs.[/caption]

We made our way to the Park via Avoca street passed Emanuel, the Jewish College. 

A  truly beautiful building with a Castle like appearance, it sits up there on the hill and can be seen from a distance. It took us a liitle while to discover both its location and function. We found it accidentally when we exited the Park via a different gate and came right upon it. As you will discover if you follow the link above, it has quite a history.

We visited the Bike Cafe for morning tea, then to walk around Fox Studios and then a bus back to Randwick proper – where I bemoaned the absence of cafes which had wheelchair access – or room inside if one could negotiate the doors. [Alas, we had returned too early because I missread the second hand of my clock for the hour hand and suggested we ought make our way back to Randwick Junction.]

I attempted to tell Andrew the reason I prefered not to sit on tables outside, this time I used the excuse of the Diner murders where perpretators had sprinked Cyanide over diners meals, killing them, murder. There are other reasons like when I was a small child and aboriginal people where forbidden to sit inside. I referred to it as sitting outside with the dogs. And when they brought the colour charts around the classrooms to measure the whiteness of our skin – they would take you away and award you to someone’s home because they thought they could make us white that way.

Home and away

We had a Castle near our place!!!


Iandra is a large heritage-listed homestead 11 kilometres south of Greenethorpe, New South Wales in the Weddin Shire, surrounded by the townships of Young, Grenfell and Cowra. The property was added to the New South Wales State Heritage Register on 18 February 2005.

I was sort of lucky depending on what you call lucky, my parents were, well just plain nasty and a stay away at one of the neighbours farms was a relief from the constant persecution I endured at home. I am different, as you must know. My father called me “IT” and I was blamed for everything that happened.

Once my younger sister insisted she would sit by the door in our old car – it had suicide doors and they were a bit wonky, well she fell out, didn’t she, and landed on the road. Lucky for her dad was going fairly slow…so.. of course it was my fault.

Anyway, from time to time my father used to go on a bender, spend all the money and that left me as the only one competent to go shoot rabbits for food,  for our rather large family. At least I had a room to myself, I slept out on the veranda with the dogs and on a cotton bale for my bed and suger bag for my  bed covers.

Sometimes if they thought I was really bad they would lock me in the Root cellar.I managed to prise some of the bricks away from the wall and dug myself a tunnel so that while I was supposedly in the cellar I would get out and play all kinds of pranks on the family – and get back in the cellar and they used to wonder who was doing all those annoying things when “IT” was locked in the root cellar.

My mother’s mother had been sent away to a Boss Cocky to be turned into a white woman and while she was away she was turned into pregnant, she returned to what they call the boongs camp and had my mother who was half white.

Mum married my dad who was a Scottish man from Abroath, him and his family all came out together and my grandfather was the local vet and what passed for a surgeon since we were over 200 miles from the nearest help.

So as it was in those day I was a coloured kid but defined by a caste system, I had a white father,grandfather and grandmother on dad’s side of the family; and a half cast mother with two full blooded and one white grandparent on her side. “IT’ was a mongrel, I was an Octoroon, I think.

At least when the Nazis with the colour charts came our way I could go down and spend time with the mob down by the dam -male or female I was accepted there and I spoke Language as well. I also spoke Scottish or whatever it was with my grandfather and no one used to know what we said.

Sometimes I thought a good bang would have gone a long way to solving my troubles.

Usually I go in head first – when they check my brain tumour but on this occasion it was feet first for a bone scan of my legs.


Magnetic resonance imaging (MRI) is a scanning procedure that uses strong magnets and radiofrequency pulses to generate signals from the body. These signals are detected by a radio antenna and processed by a computer to create images (or pictures) of the inside of your body.

Image of Iandrafrom Iandra Castle – Iandra Station & Mt Oriel Homestead. 2018. Iandra Castle – Iandra Station & Mt Oriel Homestead. [ONLINE] Available at: http://www.iandracastle.com.au/. [Accessed 09 December 2018]