About Me

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Born 1969 England. Arrived in Australia 1972. Single. No children. Partially disabled from severe osteoporosis, pituitary gland tumor (benign), myopathy and Ehlers-Danlos Syndrome (hypermobile in every joint). 18 yrs caring for my quadriplegic cerebral palsy friend, Rob. Ceramic artist www.sam-davies.blogspot.com

Saturday, July 11, 2015

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

Monday, September 16, 2013

'Save the last dance for me'

'Save the last dance for me', continued.
Robbie dreams of standing in a walking frame one day. But that is entirely up to the public doctors who told him it's not important he be mobile. I'm sure they'd feel the same way if the shoe was on the other foot...not.

Extending our Family
Harry sharing his armchair with Russell
Sweet Lola, Harry and Russell finding little biscuits I threw to them in the leaves; happily sharing. We all miss Lola terribly. It's nearly been a year since her passing.
Lola sleeping on Harry
Found these brooches a couple of weeks ago. One for Robbie and one for me. They look so much like Lola. Robbie's going to have one fitted on a wrist band so he can see her all the time.
Below's the tattoo I had two years ago on my lower right leg. Harry, Russell and Lola's paws; actual size. So I carry Lola with me all the time as I do the boys. I'm so glad I had this tattoo.
Robbie misses Lola's kisses so much and her sleeping with him. So we've our eyes on adopting a little female rescues dog we saw on the internet today.

Sunday, August 4, 2013

Russian children with CP travel to China for treatment

“The children will be treated with both Chinese traditional medicine and western medicine in Shanxi Provincial Cerebral Palsy Rehabilitation Hospital,” said Guo Xinzhi, head of the aforementioned institute. Describing the treatment that the children will undergo in hopes of ameliorating their condition, he said, “Chinese acupuncture therapy will play a key role in the treatment.”
Approximately two-thirds of the children have already begun to receive the first stage of treatment in the hospital. “Thanks to the previous treatment, he can walk holding my hand and eat with a spoon now,” said a mother of a three-year-old boy and patient named Ivan. “I am hopeful after seeing him make progress in his movement.”
This journey for treatment is funded by the Danko Charity Foundation in Dagestan. Russia has sent children with cerebral palsy to the hospital for treatment regularly: twice a year since 2008. Approximately 30 children are sent each time. More than 200 Russian children, including those who are self-funded in their treatment, have received therapeutic care at the Chinese facility.
Cerebral palsy is “caused by damage to the brain before, during, or shortly after birth, which leads to a lack of co-ordination in muscle movement.”
(6 part video with transcript. 4/08/2013. Unfortunately, Blogger will not allow videos over 100MB thus 6 videos. Thank you for your patience.)
Part 1

"My lower legs have ruined my life. Because of my lower legs I can't sleep in a bed; I can't be comfortable in any kind of wheelchair. I...for the physical care I do need it's far, far more complicated that it needs to be. The doctors know that by having me keep..." cont. Part 2
Part 2
"...that by having me keep my lower legs they are keeping me immobile. They are keeping me from sleep; from exercise; from social interaction; from so many things that we as humans think of as inalienable rights. But those rights have been taken away. And these rights have been calmly brushed away with the excuse that, "Oh, if we take your legs off, your lower legs off, you're going to be in a lot of pain..." cont. Part 3.
Part 3
"...your lower legs off, you're going to be in a lot of pain". They know I'm already in pain. I'm in so much physical and emotional pain that I want to die. That's why I came to Penrith...to give life one more chance. But as soon as I mentioned amputation so that I could sleep in a bed; so that I could roll over; so that I could have a great deal more independence, they said, "Oh, nobody would ever even consider that". Well, I..." cont. Part 4.
Part 4
"...nobody would ever even consider that". Well, I also had a talk to another doctor. He could see the value of taking away my lower legs so that I could move and do all the things I've already mentioned. But he's not allowed to go near me. These doctors are deliberately keeping me immobile. And they're not only ruining my life, they're destroying the life and health of my carer. Without my lower legs gone I will not live long enough and I get to see my carer..." cont. Part 5.
Part 5
"...long enough. And I get to see my carer die slowly as well, with no hope; with no happiness; with no desire for anything but death too. The Minister for Health, The Honourable "Laugh, Laugh" Skinner won't help. The HCCC (Health Care Complaints Commission) won't help and any organisations that have tried to help me with my situation have basically been told to leave this alone or you're in trouble. The Australian health system..." cont. Part 6
Part 6
The Australian health system is keeping me immobile.
"The Australian health system is keeping me immobile. And they're not just doing it to me. They're doing it to thousands of others like me and they're ruining the lives of their families and friends who care about them in the process.
Can we as human beings - as Australians - sit idly by while this is happening to thousands of people all over, even though we know it can be fixed! Come on people. What's going on here?!"

Sunday, July 28, 2013

Three days after more tendon release between legs on the 16th of July, 2013 - same tendons as my last release performed early last month- but not at the top of legs as agreed and discussed with the surgeon. I was not happy that my informed request for the tendons at the tops of my legs to be release was ignored again purely because of some being concerned over a short femoral nerve and short blood vessels which we've been over and over before.
The major muscles controlling my lifting or lowering of legs was instead partially cut which is good that it has now stopped the contractures forcing my knees up under my chin. But the tension/spasm - and pain - in my unreleased tendons is incredible at times; especially in this cold weather. I see no reason why they could not have been release even if it be very slightly. Sam, my carer, still can't access adequately my crease areas to clean me easily without causing skin damage and a lot of pain pushing my legs downward.
Above: before tendon release. My legs could not be moved sideways or spread unless causing me intense pain. The contractures would even crush my penis and cause it to have pressure sores. That problem's now gone. I can be cleaned easily between the legs also.
This is me laying as far back as possible in my wheelchair without causing pain in the uncut tendons and the cut muscles at the tops of my legs. My wheelchair would allow me to lay almost flat like a dentist chair. But my legs do not straighten enough to take advantage of that facility. All my physio can be done in my wheelchair at the moment due to the inability to straighten my legs at the hips.
Thursday 25th, day after Sam takes me home. My lower legs and feet are causing all sorts of trouble and same problems. But still the surgeons do not wish to remove my legs just above the knees (as recommended by a well respected world leading orthopaedic surgeon) to give me freedom from pain and allow for mobility. Before leaving the hospital one doctor actually said it was not important that I roll in bed independently!! But it's ok to be totally reliant on others for everything I need and keep me feeling guilty and trapped, apparently. And though all the doctors know I have no balance they keep saying the removal of my legs would interfere with my balance. Other words, some do not want to know the full extent of my physical limitations or possibilities.
Fortunately, there are surgeons wanting to help me. Unfortunately, they are private and are not at present allowed to touch me. I have to go through all this suffering and pain and imprisonment to make sure I don't suffer more pain. Well, that is my decision; could I really be in much more pain physically or emotionally. I'm 40 years of age and one would think I know what I need by now. I've seen my life taken from me due to my legs preventing me accessing mobility and pain restricting most of what I can do. It's better to take risks than spend the next 40 years a prisoner to my legs!!! I want to live but I can't live like this. I refuse to live like this because it is simply not necessary.
I see the surgeon again in six weeks time for assessment. I've been given the impression that nothing has been ruled out; it all depends on how well my tendons respond to physio. I respect that. I just so desire to sleep in a bed independently and free of most of my pain; be mobile; play on the floor with my dear dogs; and use a walking frame a bit.

Thursday, July 4, 2013


It's been a little quiet here as Robbie and I have come down with a bout of flu that we have been fighting for some days and I'm only just recovered enough to do some blogging. We are generally isolated but with all the mingling with people recently it looks like we've been picking up some bugs. But mingle we want; mingle we must and mingle we will.
This past week has been the worst in the 20 years of caring for Robbie. All I could do was stagger out of bed to take care of the bare necessities like feed us and clean up colostomy spillages. Robbie could not be placed in care, not even in the hospital as no one can cope with his needs adequately or appropriately even when he's not sick. And it seems every time he's in hospital for more than a few days he comes home with something new. Being so near to his second round of surgery for tendon, muscle and ligament release on the 16th of July the risk of him contracting something nasty at the hospital on top of his flu was too risky. Nor did he or I wish for anyone else to catch it!!
Nor could anyone come around to help as I was in no condition to train anyone. And no one's going to come around at 2.30am to clean up a leaking colostomy (of which two decided to burst this week!!!). The other at some other horrible hour of the morning also. Dramas do not happen during working hours. And paid carers who can stomach colostomy clean ups are far and few anyway. And in most cases they are not legally allowed to deal with such things. That is generally allocated to a stoma nurse or someone with similar training. And his urodome deciding to fall off at the same time as the 2.30am leaking colostomy which just added more to the excitement and the knowledge that a carer like myself caring for someone so severely handicapped as Robbie is all alone at the end of the day.
This is Robbie's first bout of flu since knowing him. It's my first in over 20 years. He only had three colds during all the years living in the heat of the Northern Territory. But in ten months of moving to a cold climate he's had two colds and this flu. Not that we regret our life saving move for one moment we're just not used to being struck with viruses.
Last week it was rather soggy in Sydney what with all the rain. But that did not deter Robbie and I from shopping and then attending a games night. Here's Robbie above - with moose hat - after the games night having spent some time wrapping him and his wheelchair in plastic for our journey home. As soon as I'd finished the wrapping it stopped raining. But kept the wrapping on as better safe than sorry. It started raining again as soon as we arrived home. Two days after this he and I are sick as dogs.
I was suppose to sew a special rain coat for his wheelchair this week but the flu delayed that. Had a lot of important stuff on this week that's had to be postponed. Such is life!!
And for those wondering. Robbie's percutaneous surgery in June for his hip twist has his back and butt in great condition. See below.

Before percutaneous tendon release.
After the release.