Hi, Everyone.

It is now day 15 of our sit-in at 50 Station Street, Penrith, NSW. We are under censorship by the Australian Federal Government and State governments; Australian Medical Association; and Australia Medical Board. All major and popular TV media programs such as 60 Minutes, A Current Affair and a list of others are fully aware of our story but have not come near us. Nor has any papers outside the Penrith area as far as we know.

Please, anyone with media connections in other countries that are not owned by Rupert Murdock can you get our story out the internationally. Thousands of disabled, carers, very ill people and the indigenous are under censorship here in Australia. Australia hasn't earned it's place by the UN of being on of the worse countries for abuse and neglect toward it's disabled, indigenous and refugees for nothing!!! Help us please.

Our iPads were stolen from our tent. But we have now replaced them as I always set emergency money aside for such disasters. For Robbie it is a disaster as that is what keeps him relatively sane while confined to his wheelchair day and night! My iPad had photos that can not be replaced and my advocacy work/links in it!!!

Then yesterday early morning, Saturday, someone ripped the controls off of Robbie's hoist. Charming!

But we stay put. We will not move till a hospital publicly announces that it has found willing surgeons to save Robbie's life by allowing him the right to honor his 30 year need to have a bilateral hip disarticulation. Surgeons who genuinely live by their Hippocratic oath not to harm. Surgeons who do not indicate that it is acceptable for a patient to go home and suicide along with his or her carer when both their lives can be saved. How shameful for any doctor or surgeon to have such an attitude! What shame they bring on other honorable men and women in the medical profession who fight daily to save the lives of their patients without discrimination or fear.

Robbie also on facebook. Please share. https://m.facebook.com/SaveOurRobbie

 

PERCUTANEOUS TENDON RELEASE

 

 

Diagram showing the powerful Iliofermal ligament that may contribute to the severity of Robbie's contractures and the inability to totally straighten out in the region between his torso and top legs that presently bring his knees toward his chest when laid down (Pictured below). Due to a seated posture 24/7 since the age of 12 the Iliofermoral ligament would have become shortened.

 

 

If appropriate it's hoped with further consultation with orthopaedic surgeons he will be allowed a partial release of the Iliofemoral ligament that he has not had before but may give similar relief and results (but in a different area but for similar mobility range and hygiene reasons) as a recent percutaneous tendon release in his groin area as pictured below. And consideration of partial tendon release in the same area as the Iliofemoral ligament.

 

           

 

Procedure performed 4th June, 2013.

 

 



 

Above: before and after percutaneous tendon release of the inner leg groin area. Pressure area causing prior severe pressure sores on the lower right back has been relieved due to the majority of the twist in the hips being rectified. Robbie had non percutaneous tendon release in the same area as a young child but physiotherapy was not followed afterward resulting in the tendons again shortening and leaving him eventually with a worsening twist over the years and severe pressure sores these past six months as seen in above picture.

 

Percutaneous procedure is chosen by some surgeons to reduce risk of infection and avoid the pain and discomfort of stitches. We both thank all involved for their consideration of Robbie's comfort post op.

 

 



PUBLIC HEALTH SYSTEM'S ROAD TO HELL

2:58

Round and round I endlessly go,

Forever chasing my tail.

All the roads long traveled on,

Only seem to lead to some sort of hell.

Hi, Sam here. I'd like to write a lot more after Robbie's video just taken of him. But I am too tired this evening. My head is spinning and literally hurts like I'm in a vice. But I suppose Robbie and I are in an inescapable vice; caught between a rock and a hard place. So I'll be brief.

The System offered to ship Robbie into inappropriate care facilities where distance and my health will prevent me visiting him. Institutionalized for several months till he has a surgery that we all know will make little difference to his mobility and pain. During that time most of his pension will go to a care facility apparently. Someone said it won't. Then I become homeless.

Like Robbie keeps reminding me, I am stupid to think anything will change as nothing has in 19 years unless it was for the worse. A few thousand dollars would have fixed up most of our problems. But instead the government has spent needlessly over two million dollars of tax payers' money on us and chooses to continue to do so. $40,000 was all that was needed. Misery and suffering is a multi-million dollar spinner. And if one little fish gets away the others might hear about it.

And because I refuse to commit my friend to an institution permanently I can rot in the bed I made for myself, apparently.



FEET AND TOES

 

Having never walked Robbie's toes slightly overlap, feet stunted and puffy in appearance; and very small toe nails. His feet feel like they are splitting if he puts any pressure on them. He has nail rot in the big toes that is being treated successfully with Tiger Balm.

 

 

 

 Both feet point outward and are generally strapped together with a soft towel so they do not 'wander'. The position of his feet also make sleeping in a bed very uncomfortable and painful as they are fixed and dig into any mattress.

 

His form of cerebral palsy makes his skin super sensitive and when Robbie's feet are touched they jump violently or go into a clonis attack. Usually his feet are cleaned with Sorbolene cream and let the skin (yellow areas) fall off of it's own accord or scrap it off when soft enough (with lots of 'Ouching!!!' from Robbie).



 

WORKS OF ART

 

 

Being an artist who weaves clay into fragile complex ceramic pieces I found the following implants used in osseointegration stunning works of art. I could not help but have my camera - a constant companion - snapping the following images as soon as I laid eyes on them sitting gracefully in a glass cabinet with mirrored back showing off their full beauty and technical genious.

 

 



 

Bone in itself is a complex network of beauty, strength and durability. It is fitting such over looked and under appreciated material fuse with the amazing network of crystal/snowflake like structures made by human hands. Structures bourne from the imaginations of some pioneering orthopaedic surgeons, engineers and technicians working together to combine art with a surgical procedure such as osseointegration. Ground breaking and exciting work that has brought new and possitive chapters to many amputees lives in the form of previously undrempt of mobility options that most abled bodied people take for granted.



 

Yaaaaaaay!!!!

Sam rubbing the middle of my back while I wait for my electric wheelchair to arrive that has taken eight weeks to repair. Notice how my posture here resembles that of a shrimp! Whenever someone massages or rubs my skin my body's response is to curl up into a ball. And it is traumatic and PAINFUL!!

This is my position when placed on my back; again, shrimp like. Severe contractures of the hip. Having spent several weeks by my bedside 24/7 Sam's attendance has helped keep any pressure sores away. Also had the rental of a special air mattress that continuely moves like a wave. Without the mattress Sam could not have cared for me.

At the end of the day it was still exhausting caring for me due to having to keep propping me up, repositioning my pillows that became dislodged due to either my legs' clonis and twitching or my physical activity as I did combate with an IPad game or two. Pulling the creases out from under me was also problematic as can be seen in the above picture with all the crease marks. But mostly NO pressure sores. Sam being on high alert when feeding me in bed during this time had me only choke badly a couple of times. Took me a couple of days back in my wheelchair for me to swallow my food properly again.

Painful, painful, painful. My right foot is now super sensitive due to nerve damage a couple years ago when I had severe cellulitis of the foot while in community care that had me hospitalised for four days. Sam nearly had kittens since the staff had not told him about my situation. He took me up to the hospital by taxi as no ambulance available at the time. No one can touch my legs anyway or I twitch and jump. And if not this it is just down right painful.

The twist in my hips is very visible in this photo. It is taken from above while sitting in my wheelchair that arrived at 8.30 am cutting it fine as a taxi had been booked for 10 am to take us to my appointment with one of the worlds leading orthopaedic surgeons.

Five minutes after being placed in my chair. No I am not comfortable. I need my head rest, tray to lean on and chest strap so I don't fall over due to the twist, twitching and pain in my hips right down to the tips of my toes. And my legs have to be strapped down. Here they were very active and bouncy. Again notice the position of my arms. Until I am fully set up and strapped down in my wheelchair I can not move my arms or my legs move with them.

This is the only sore I started to develop about two days before my wheelchair arrived. Great timing what with the developing sore and my all important surgeon's appointment.

Here I look how I felt. DREADFUL!! Swollen eye; back stiff as a plank. BUT NOT GOING BACK TO BED...NO...NO...NO!!! The above photos were taken on the 14th of March. Today is the 21st and I've spent no time back in bed. I am dreading going back to hospital or anywhere involving a bed.

I turned 40 on the 19th of March, 2013, and thankfully I was able to spend the time in my wheelchair.





PHYSIO HELL

Here's Sam giving me a massage to loosen my upper leg tendons. And yes, he's qualified. It's excruciating. This is what I'd also have to go through for the rest of my life if I had surgical tendon release which I had as a child and it failed as physiotherapy was not given post op. At the age of 40 my legs are now deformed where as a child they were still viable. I've been offered a repeat of the surgery. But at the end of the day I'd still have useless legs with a life that revolved around taking organ damaging and toxic, heavy doses of pain killers; muscle relaxants (that make me drool and loosen my throat muscles increasing my choke rusks); and excruciating painful physiotherapy as my legs are now deformed and not viable. 

Without my legs I'd not have this hell to go through presently. Nor would I be bed ridden as I am now. Nor would I be suffering the potentially deadly skin problems I am having. Pressure sores and skin infections kill hundreds annually and now I am just waiting my turn. Nor would I be stressing all those battling to care for me and are traumatized by seeing the pain I am in everyday all day. Sam, who's had to deal with this for nineteen years, can only do and take so much, and I can only continue to wish I were dead. 

Shame the surgeon who had the final say on my fate and has condemned me to this existence of hell isn't given the assignment of looking after me for a couple of weeks all by himself without any help and see what the Hippocratic oath not to harm really means.