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

SAVE OUR ROBBIE!

Hi, All.

It's been sometime since Robbie's double above knee amputation. It has been a total success for what it was intended for with no complications whatsoever.

Robbie was assured that further operations would be considered in the future to tackle the arthritis and bone spurs in his hips but a few doctors have decided this is not going to happen. So since the amputation on 11th December, 2013, Robbie has not spent one night in a bed. His condition is worsening as seen by the images I now post of recent spine, neck and hip. Robbie and I have begged for him to have the bilateral hip disarticulation he first wanted. But the reply is a big NO. All other options have been ruled out it seems. Robbie said if he didn't get help he will soon have to be placed in an institution or hospitalised where he will then die. Some of the doctors see no problem with that scenario. Well, we do see a problem! Don't you all out there see a problem?

         Image of Robbie's spine two years ago. Below images of Robbie's spine, neck and hips today. Significant change! HELP!

Deliberately letting another person with cerebral palsy die needlessly because of inappropriate 'care' or inaction regarding surgeries is negligence of the highest order. Another weak excuse among the many was that this is new breaking ground for someone with cerebral palsy. What a load of bull dust. Risks are taken everyday in medicine and new ground successfully broke.

So in an attempt to yet again save my friend's life I have started a campaign. SAVE OUR ROBBIE! It involves emailing three individuals a letter Robbie and I composed showing how many people care for and love him and will not allow their friend to die because of some surgeons' inaction and reluctance to find someone with the courage and respect to help Robbie. The three, Professor Al Muderis, Fiona Scott (MP) and Dr Rami Sorial wish to help Robbie but without people behind them for reassurance that they are not responsible for any bad out come, their hands are tied. Professor Al Muderis and Dr Sorial do not necessarily have to be the ones performing the disarticulation though Robbie and I would love Professor Al Muderis to be allowed if he so chooses but since he is a private surgeon he can not operate on Robbie apparently. Bloody red tape!!!

Professor Al Muderis, Fiona Scott and Dr Sorial have been notified that they should expect a few emails soon in support of Robbie's informed choice to risk disarticulation. After all he's going to die soon if he doesn't get the help he has asked for so what's the issue!!!

Please note that Professor Al Muderis and Dr Sorial may not necessarily be in agreement with Robbie to have the disarticulation and should naturally not be forced to perform such a procedure against their will. All we are asking for is to find confident and competent known orthopaedic and vascular surgeons to perform the bilateral hip disarticulation so as to save Robbie's life.

The letter can be found at a site I have created for the SAVE OUR ROBBIE! campaign at www.saveourrobbie.blogspot.com .

A big thank you from Robbie and myself.

Robbie the FREEEEEEEEEE amputee!!!!!!! PART II.

 

 



 

 

 

Robbie relaxing during his sixth session of acupuncture to combat phantom (fake) pain. Phantom pain is only problematic when he's stressed physically or emotionally and comes in waves with a pain level of about three out of ten. So all is going well with this aspect of the double amputation with improvement each passing week. Heat packs are also helping reduce any phantom pain. He's not taken pain killers for over three weeks.

 

The arthritis in the hips has been pretty good unless irritated by contractures causing the ball and socket to rub together or if the weather is cold. He's taking supplements of: calamari oil, rose-hip capsules and herbal tea, Green Lipped Mussel oil, cod liver oil, extra virgin olive oil, flax seed oil, chlorophyll and ginseng. Have bought a bath tub to set up in our sun room where later Robbie will be able to soak in a hot solution of salt crystals. 

 

During this week Robbie was having severe contractures around his right ball and socket mostly underside. I tilted and reclined his wheelchair. And now with the absence of legs I can massage all around the ball and socket of both stumps (image below) while still seated in his wheelchair. This is wonderful for both of us. Robbie doesn't have to endure the pain of being transferred by hoist into a bed just to have his tendons massaged. And I can just sit in front of him and use his seat cushion to rest on for support. No exhausting transfers!!! After the massage the contractures reduced by 95%.

 

 

So much necessary flesh had been saved in order to cushion the cut bone around the stub that it was obstructing the stoma of Robbie's colostomy and often he's had to wear nappies to catch the waste instead of the colostomy wafer and bag. But he's now lost some more weight around the legs at the top and gut so - as the image below shows - there's no more obstruction. And the wheelchair's recline function (second image) allows more access the stoma and for general cleaning around Robbie's groin area.

 

 

 

Fixamol is used as a 'second skin' to minimise scarring due to the skin stretching. Now that Robbie has lost more weight the skin is not as tight and so helping the healing process nicely. Heat packs are also applied to help blood circulation and massaging the area to stimulate nerve healing and to desensitise the scars and keep the skin soft.

 

 

The only area that's healing slowly is where the drainage tube was place in the left stump. This may be due to the dissolvable stitches causing irritation and should eventually resolve itself. In the meantime, ice packs are used twice a day to keep any infection at bay and lancing of the wound.

 

 

With hardly any phantom or physical pain - and the freedom that has come with being legless - Robbie's been out and about. He's got far more energy, confidence and mobility. Below is a picture taken today, the 8th of February, 2014 playing games with a large games group. Both our lives have changed so much for the better. Robbie no longer wants to die so has stopped asking me to kill him. And I no longer dread getting out of bed each morning as life is no longer one unending time in 'hell'.

 

 

 

 



 

 

Robbie, the FREEEEEE amputee!!!

 

11-12-2013. Last photo together with our furry family five hours before Robbie's double above knee amputation surgery. Robbie's companion dog, Feather, the long haired Chihuahua; Bun the rabbit; Russell, the Jack Russell and Harry, our pound rescue English Pointer.

 

 

Big thank you from Robbie.

 

 

 

Reading a book while waiting to be called for surgery.

 

 

Waiting Room Chat.

 

 

Waiting to be wheeled away to surgery.

 

 

Couple hours after surgery. "This is the most comfortable I've ever been in a bed in my entire life", was one of the first things Robbie said. The weight of his legs are no longer pulling on his back.

 

 

Not 24 hours after surgery and Robbie's sitting up in bed for the first time in his life without pain and not looking like a human pretzel. He enjoyed his first meal in comfort.

 

 

Friday, the drains were removed.

 

 

Playing with his iPad briefly during five hours of sitting up. This was totally impossible previously.

 

 

 

"My stumps. My stumps. My stumps!!!"

 

 

 

Good-bye legs. Good-bye old life.

GOOD-BYE PAIN!!!

 

AMPUTATION UPDATE: 26-12-2013

 

 

 

Straight after initial dressings removed (18-12-2013) only seven days  after the operation.

 

Relief! First time in wheelchair (19-12-2013) eight days after surgery and so comfortable.

 

 

 Above: 18-12-2013

 

 

Two weeks after the surgery. Healing well.

 

 

Above: First acupuncture session for phantom (fake) pain 21-12-2013. Robbie feeling very relaxed. Effect lasted a few hours. But the pain is gradually fading and look forward to the next session.





HAPPY 2014 EVERYONE :-)



 

PAPAW OINTMENT SUCCESS!

 

Since Robbie's been home the past six weeks I've been applying papaw ointment on the raw skin under his stoma area and also the other side that was inflamed. Two weeks with only cloth nappies as the wafers naturally won't stick to the oil based papaw ointment. After a couple of weeks the skin cleared up totally and enabled the fixing of wafers again!!

 

 

Above is what Robbie's skin looked like about seven weeks ago. While in the hospital we were given a hard time by a couple of nurses. Which was very unusual as it's generally the nurses who keep us sane after dealing with obstinate, judgemental and arrogant doctors. Leaving the hospital one nurse had convinced the others that Robbie did not suffer psoriasis but a fungal infection and also claimed he was allergic to the Hypafix - which is low allergy (fortunately not all agreed). I've been using for many years Hypafix to keep the wafers on! When Robbie's psoriasis flares up it has nothing to do with the Hypafix.

 

 

Above's an image just before changing the wafer that has been fixed down with Hydofix for four weeks during several wafer changes after cloth nappies were no longer required. Note faeces under the wafer that had been there for about three days in direct contact with bare skin. Faeces Robbie and I decided to leave demonstrating what happens to his skin if solid faeces is in contact with his skin for a long period of time. Watery stools burn but not solid.

 

 

Faeces stuck to skin.

 

 

After clean up no sign of skin irritation or burning. Treated with ice as usual to kill any bacteria and sooth the area after any rubbing necessary during cleaning that could have broken the skin but not visibly noticeable.

 

 

Lifting up Robbie's belly to expose the crease area free of inflammation or psoriasis.

 

Placing on fresh wafer with application of paste filler. Still have not been given wafers that are indented to conform with Robbie's slightly sunken stoma. Must chase that one up.
 

 

Application of four strips of Hydrofix; one strip for each side. We've been using this tape for over ten years. It helps keep the wafers fixed and also prevents the faeces leaking out quickly when it has pancaked (crept under the wafer).

 

 

Wafer with added 'ring' to fill the indentation and some paste as an extra measure.

 

Papaw ointment is applied on the crease under the belly, in the leg creases and on the scrotum. Then placing of the usual cloth nappies to separate skin folds, absorb moisture and prevent the oil compromising the Hydrofix. Nappy always there to catch any faeces if there is leakage.

 

******

 

Today's the 25th of October and since applying papaw ointment to Robbie's groin area and under his arm pits many weeks ago he's been mostly free of his psoriasis...as long as cloth nappies are still placed between his skin folds.

 

His face still breaks out but I've noticed heavy applications of sorbolene like a face mask every few days is helping prevent severe break outs that have left him in the past looking like he's been attacked by a blow torch. I'd smother his face with papaw ointment but being greasy it would not be pleasant and he'd rub it off unintentionally and get it all over his iPad and anything else he touched. 

 

 



CEREBRAL PALSY AND ACUPUNCTURE.
(This page documents Robbie's acupuncture sessions and my foot massage and detox spa. Updated every two weeks.)

Robbie's not had any further acupuncture since the 19th of October as he's feeling very distressed and unsafe in his malfunctioning wheelchair. He's refusing to leave the house unless for an appointment with surgeons regarding removal of his lower legs. And then we have to take a taxi. Fortunately, his contracture pain is still bearable and generally non existing since the acupuncture and only takes pain killers rarely when his hip arthritis is playing up.

****

19th October: Robbie had a forth session of acupuncture that is keeping his leg contractures at the tops of his legs at bay in a big way. Jack, the acupuncturist, is now also working on seeing if some of Robbie's spasticity in his arms can be released. Time, like with all things, will tell.

 

29th September: Robbie had a second session of acupuncture yesterday as he's been experiencing swinging 3-5 out of ten pain levels the past six or so days. Eased somewhat with pain killers. Today, the day after second session, he is free of pain relating to muscles and tendon contracture. The only pain he's presently experiencing is arthritic pain in his right hip and found relief with 400 mg of Ibuprofen.

It looks as though Robbie also suffers restless leg syndrome as his legs start to twitch at night and finds relief by taking two Kava tablets.

The only other pain is the dead weight of his lower legs pulling the tops of his legs. Foot plates do not provide relief as his feet are too sensitive to rest on any support. Supporting the feet also moves the ball and socket out of it's favourable position and results in pain.

22nd of September: 7 days after acupuncture mentioned below. Robbie started to have bad pain again today and needed pain killers. So will take him to the acupuncturist this coming Saturday for another session.

September 14th: Due to the unbearable pain Robbie's been experiencing for the past six weeks he had a session of acupuncture on Saturday afternoon, 14th September. His pain levels went from a seven out of ten to a 'point five' out of ten! So presently he's pretty much free of pain as long as he doesn't move. Before he was having pain and spasm even when still and needing pain killers and very expensive Kava in tablet form from a health store. I'll make another appointment for him for this coming Saturday or when he requests one. The acupuncturist only works Saturdays, apparently.

 

His hip's ball and sockets are not rubbing together as hard now due to the relaxing of the muscles since the acupuncture. Which also results in less pain with the arthritis.

 

Robbie has an appointment this week with the surgeon who performed the tendon releases and another colleague who has yet to meet Robbie. This was booked before thinking about the acupuncture. But Robbie needs to see him anyway regardless of the acupuncture and any success with containing the pain. Like Robbie keeps saying till he's blue in the face; no matter how much tendon release he has he still will not be mobile or be able to sleep in a bed as long as he has his very painful and useless legs. It's just not right. Others who don't have cerebral palsy have had useless limbs removed so they are mobile or freed from pain. Thirteen years living and sleeping in a wheelchair!! His back is starting to fuse but to a couple of doctors this is not an issue and have no regard for any recommendations from a world leading private orthopaedic surgeon we saw some months ago.

 

Didn't take any photos of acupuncture session but will next time. Below is the picture I showed the acupuncturist before the session. Explained the surgeries Robbie apparently had and what tendons and muscle might be presently causing his pain, emphasised in the image. The acupuncturist is Chinese and trained there both as a doctor and acupuncturist. I've always believed in a holistic approach. I can not take Robbie to China for treatment so this is the next best option.

 

 

Due to the easing of debilitating pain Robbie was able to attend Karaoke for the first time in months yesterday evening!!

 

 

NOW to a totally different issue...

November 3rd: Forth session of foot massage and detox spa.

 

Seconds after ion cleanser turned on.

 

Five minutes into treatment.

 

Twenty minutes.

 

Thirty minutes.

 

The lady next to me was also having a detox spa and her water after the half hour session was only slightly mucky looking. A bit like my five minute photo. It was nice to have a comparison.

It's two months since my first detox spa. My joints are less stiff and sore.

October 13th: Third detox session.

 

 

 

September 29th: Had my second session of foot massage and foot spa detox.

 



September 15th. 5 Minutes                September 29th. 5 Minutes

 

The first image above is five minutes into my first session on 15th of September. The second image is five minutes into my session today, 29th of September. Note that the water is darker after the same time period and that the left side is darker around the left foot which continued for the whole half hour. I decided not to move my feet to see if the liquid remained darker on the left; which it did. Unlike my first session that was uniform in colour distribution and less cloudy by the end of the session. I had a much more intense foot massage with todays second session so perhaps one side of the meridian was flowing more for the detox.

 

September 15th: The day after Robbie's first acupuncture session I had a foot massage and for the first time tried the detox foot spar. Very interesting!!

 

So below are some photos and a couple of video clips of the process taken on the 15th of September.

 

    

 

  0 minutes.           5 minutes

 

 10 minutes.         15 minutes.

 

 

   20 minutes.         30 minutes.





 

 

 

 

Sample of sediment settled quickly leaving crystal clear liquid above. This under scores the fact that heavy metals and so forth are extracted from the body. Booked in for another detox in a fortnight. My body needs all the help it can get. Expensive but I'm determined to live longer than some would like!!



 

 

Above: About 20 minutes into the ion detox spar.

 

 

Stirring up the resulting sediment.