Monday, April 22, 2013

'Ouch' Video
(and other stuff)
It's now seven days into my third hospital stay. Sam asked me what I wanted put on my blog spot today. Well, apart from sitting all day listening to my radio to try and keep sane I've done nothing much apart from do several pees into my nappy followed by the exciting nappy change causing me tremendous pain as my tendons protest and threaten to rip my legs out of their sockets.

My 'Ouch' video with transcript.
"Ugh, no!! Every...every time I [have] to sit up to feed my...have myself fed or drink anything [I have to be sat up]. And when I am [sat up] the pillows [between my legs] are in one place and of course when I lay back down again they've shifted several crucial inches that causes me great pain. This is a...this is a pain to me all over. A pain in my neck; a pain in my legs and a pain in my hips that isn't bloody necessary...I'm so sick of it..."
And, no, I'm not smiling at the end of the video. I'm FAR from happy!! That's my cerebral palsy 'grin' that I have most of the time and especially when in pain, and has most doctors think I'm quite comfortable.


Oh, yes. I must not forget being informed today by a student doctor - accompanied by a registrar- , who had not seen me before, that my pressure sore looked superficial when she'd not actually taken off the dressing to see it. When I reassured her that it was ok to take it off so she could look at it properly she declined and said she'd get the nurses to report on its condition when they changed the dressing. And I'm supposed to place my life in these doctors hands!!!
Sam not having been present for the examination took a look then informed me that it sure was superficial, so superficial there was no sign of the sore as it had totally healed and no sign that the plaster had actually been disturbed. So there was no further use of the plaster as long as I was not sitting on it. Not that I can sit up properly in bed anyway as I can only sit on my left side all scrunched up (which is causing me heart-burn) as my legs are in the way. It was good to have the plaster off as now I don't itch in that spot (just practically everywhere else).
This... this in seven days.

Sam apologises for the bad quality picture taken immediately after the plaster was removed. His camera was misbehaving today (22-04-2013). He'll have a new one to replace it tomorrow all going well.
A big 'thank you', from both Sam and me, to all the nurses for their wonderful care.
Sam nipped back home then brought my iPad to me as I was going into giggling fits out of boredom. Which was driving the nurses mad as they weren't ever sure whether I was giggling or in stress and had to keep checking on me. I often sound as though I am in pain when laughing or singing. And I am very, very loud as I find it very hard to lower my voice due to my particular cerebral palsy. Which then disturbs the other patients. Sigh!
Reunited with my beloved iPad. Though I'd much prefer being outside watching live sport like green bowls and swimming that is near where we live.. I live in hope.

Sunday, April 21, 2013


Due to the brain damage Robbie's stress control mechanism is broken. So whenever he is overly stimulated the synapses in his brain misfire - whether he is happy or sad - and produce what are called pseudo seizures. He is total conscious during these events and can feel them coming on. These can last from a few seconds to three minutes or more. But if he doesn't stop he does not get enough oxygen. Fortunately, when in a stable environment these 'fits' are rare. He's only had to visit hospital twice by ambulance during nineteen years and placed on oxygen and given sedative.
Generally he can be helped out of 'fitting' by firmly rubbing his scalp. No slapping or tapping him lightly on any part of his body or this will only produce more tremors as his skin is very sensitive and this only causes more stress and trauma.
Robbie and I were joking around today in hospital and the result was the above 'fitting'.

Thursday, April 18, 2013


Transcript available at bottom of post.


Robbie speaks up about the cruelty and indifference by some doctors in the public health system towards his suffering that extends to some others with Cerebral Palsy and those fighting to care for them.

Robbie: I don't know what made me. Whether a loving coupling; a benevolent deity or a mad scientist. I don't find myself particularly deserving of love and life but I can't help wanting it. I don't want...I don't want misery. I want life and I want love like every other human being does. But according...according to the Australian medical...ummm...system, I don't...I don't deserve a look in. Unless... it is to load me on already overworked, underpaid nurses. Moving me around is agony.I have to be moved around ten times a day. I can't stand it and I don't want to stand it any longer.
Sam: What about your 'elective' surgery news today?
Robbie: Sigh! I could be waiting for anywhere up to a year for any kind of surgery. The doctors don't particularly care whether that surgery is going to be affective or not. That's just the surgery they plan to give me to ah, say they've done something. BUT they might do it a year from now. Not acceptable.



Above: an inconsolable Robbie (an image from the video above it) after being told he can wait for up to 12 months or more for a simple partial tendon release - that isn't going to do much for him anyway. Until then he can remain bedridden while the calcification of his lower back worsens and he can end up institutionalized as I'd not be able to care for him under such conditions. Hopefully by then he will be beyond help and the recommendations of a world leading orthopaedic surgeon can be thrown in the waste paper basket. 

But is this news any wonder, since the news came from the same doctor (one of a handful who do not necessarily share his opinions and feelings but out ranks them obviously) who is involved with his latest stay in hospital who admitted to Robbie, during his last stay, that he would like to see me out of the picture (run over by a bus as Robbie put it to him). Then Robbie could be committed and thus have no say whatsoever regarding where he lived or what medical treatment he could have. (No advocate; no help; left totally defenseless). And, further, that there were no appropriate institutions so he would die or remain in chronic unbearable pain and bedridden. Wearing nappies and laying in his urine most of the day and raising his risk of pneumonia due to choking on food and chest infection since he can not sit up.

As one of our GPs some years ago said: 'Don't bother taking on the public health system as it will crush you along with those who try to help'.

Robbie is so angry that I tried to get us a new life in N.S.W and that I did not gas us both instead. He told me I was wasting our time. No, some doctors do not care about or follow the Hippocratic oath and are an absolute disgrace to the medical profession.

 It's so ironic that when we first went to a public N.S.W hospital some of the doctors felt quite indignant that we feared the same abusive and negligent treatment by the N.S.W medical system as we had experienced in Darwin (which most consider a back water full of ferals. Well, some doctors have now proved to be even worse by preventing or hindering those willing to help - both within the public and private system - from doing. Worse because there are more hospitals here and doctors who they are aware of who can and would help.

Robbie is a viable human being who could become mobile and free of most of his pain. But some do not want this. Not for him or others or their carers and families. And they will do everything to block those who are willing to help and who do follow the Hippocratic oath or have morals.

What can be said about doctors who willingly and knowingly leave a patient in chronic unmanageable pain and bedridden knowing their condition will worsen if not seen to immediately. Crippling them further and rendering him or her institutionalized unnecessarily. DELIBERATELY allowing and making this happen. Knowing the situation and condition of a patient is treatable; that the appropriate treatment can liberate and will not result in death. Correct Robbie and me if we have got it all wrong here. Someone; anyone?? No. Didn't think so.


Robbie: Howling for the first 23 seconds and during most of the video.

Sam: As you can see, Rob's really upset. But that's no surprise as this is unfortunately the way those with cerebral palsy can be treated and are treated. They (doctors and authorities) are so use to just putting people like Rob away in homes. And that's why a lot of them die every year needlessly. Or become far sicker and disabled. Like now Rob is expected to wait at least twelve months to have a 'minor' tendon release while they (surgeons, doctors and others in the public medical profession) are fully aware that Rob's lower back is starting to calcify because he can not move properly. Now, they say they have to consider the 'welfare' of all their patients. No they don't, 'cause an operation that Robbie is suppose to be having is so simple and quick. Twelve months!! Really. Yes, twelve months to become more severely handicapped then he already is. Really loving care. NO. Hippocratic Oath to protect; help. No. It does not exist. Not with some of these surgeons and doctors.

Monday, April 15, 2013


The above 2:40 minute video is a demonstration of how I can clean Robbie while he's in his wheelchair. It's easier for both of us and far less painful and traumatic for him than hoisting him onto a bed and then trying to get him back in his wheelchair again.

Despite my degenerative spinal disease, brittle bones and myopathy I've learnt over the years how to correctly position myself to safely lift Robbie without harm to either of us. And I take pain killers in order to function. And I suppose I've a high pain tolerance having lived with pain of some sort for over 20 years. No point in complaining. Just get on with things. My lack of energy and high anxiety levels over Robbie's future welfare is my main concern.

Though the video shows how easy it is to access Robbie's butt, accessing his groin/pubic area is another totally different situation. I had to place him in hospital care today for a couple of weeks as his pressure sore situation has taken a turn for the worse and his contractures are worsening. I can no longer cope emotionally or physically till his situation changes for the better. After 24/7 caring for him these past few months I need sleep and rest. Though I will visit him daily to check on his sores and keep reassuring him that he is not going to be committed to an institution and left to die. The hospital is thankfully nearby. 

Sunday, April 14, 2013

Tuesday 9th April
Friday 12th April
Treatment: Ice, Tiger Balm and paper napkin stuck down with Hypafix. Did not remove the Hypafix or it would rip off the fragile surrounding skin. I just place more Hypafix over the old. The Tiger Balm helped prevent the sore sticking to the napkin and also sped up the healing due to keeping bacteria at bay and increasing blood flow. The sore is healing despite still being pressed heavily against the back of the wheelchair. Tonight I repositioned Robbie's back cushion and he says it feels a lot better. So hopefully the sore will heal even quicker now along with continuing the ice and Tiger Balm treatment.
15th April

Nope. Repositioning of back cushion did not help. The small pressure sore to the left is worsening. The lower right back sore is stable the sore above right has healed with a large scab peeling off tonight. The dark area at the very lower right bottom is skin hardening as not enough blood supply in this area. The whole area in general is not getting enough blood as apparent from the purple colouring. The blood spot is from a small bit of skin that was stuck to the Hypafix. The rest of the skin did not stick as the Hypafix was several days old and had lost most of its adhesiveness. Smelt awful.

More application of napkins and Tiger Balm. Where the hip is not forced against the wheelchair's back the healing was successful. Unfortunately, I can only do so much. Robbie's twist in his hip is also compounded by the fact he has calcification of the lower spine causing it to fuse making it slightly concave (banana looking) and pushing his lower back backward as his top torso is moved forward as it hurts him to sit back now. Thus the pressure sore at the lower right not able to heal.
There seems no choice now but for Robbie to be confined yet again to bed. But I can not care for him as I've no support - and no appropriate support is available - so it means another spell in hospital and more mucking around. I can not solely care for him while a public surgical team is collected together over time who plan to do a minor tendon release some time in the future that 'might' help. I've run out of time despite months and months of asking for help.
 I've spent the entire Sunday of this weekend in bed sleeping and again dosed with pain killers. Only getting up to feed Robbie and help him urinate into a bag filled with a nappy as he can not wear a urodome at the moment due to sores on his penis that have nearly healed.
All this despite a world leading orthopaedic surgeon recommending total tendon release of the groin area and amputation of the legs just above the knees. Not only would this solve Robbie's hygiene issues it would give him mobility, help halt and/or lessen the fusion of his spine and remove most of the terrible pain he has in his groin, and naturally remove all issues with his knees and feet.
Actually, most who have hands on care of Robbie see the rational of the recommendation and even Robbie's amputation request before seeking an advised second opinion. It's only those in the public health system who can presently help that are reluctant (some want to help but have their hands tied due purely to political medical red tape). But since they're not the ones caring for Robbie 24/7 and experiencing worsening health issues is of no concern. Some who have not even met him or taken the time to speak with him generally have the final say.

Here's the last bandage change with body fluid and scab. Top middle of the image is body fluid. The little pieces to the right are the scraps of rotting flesh I removed from the right lower sore. At the bottom is the large scab that came away with no problems from the now healed top right pressure sore. Again, the Tiger Balm prevented the sores sticking to the napkin and helped blood supply. Napkin helped keep the sore dry being absorbent and allowed aeration to some degree.

More daily ooze from Robbie's groin area collected on cloth nappy accompanied by the usual stench.

22nd April
After seven days in a hospital bed and the nurses following Robbie's skin care plan.


Wednesday, April 10, 2013

Pressure sore lower right back. First serious one while sitting in wheelchair due to worsening twist in hips.
Padding to protect pressure sore. Iced and Tiger Balm applied.

Monday, April 8, 2013

Within a month of removing the skin flakes from Robbie's scalp they're back with vengeance. Definitely glad he's bald again. It's never ending. Scalp, eye-brows, ears and groin. He needs more sunlight and access to exercise. Unfortunately as long as he's debilitated with his useless legs the latter is not going to happen. Will start sitting him outside this week. I am so exhausted. Spent most of the weekend in bed sleeping and feeling as sick as a dog. Fortunately, Robbie was able to entertain himself with his iPad. And waited patiently for me to crawl out of bed now and then to feed him and our dogs.
Above, Robbie's scalp is covered with a thick layer of Sorbolene that is left on for a couple of hours to soak into the dead skin.
His face also had lots of small flakes constantly dropping into his lap so that got a smothering also.

This was taken a couple of hours after the Sorbolene soaked skin was removed.

And after a quick whip over with the razor he looks as good as new...'til next week, sigh!!! May the sun be kind to us. Must get those zinc tablets also.

Tuesday, April 2, 2013

Rob's raw and weeping scrotum/under legs.
(Update: 03-04-2013) Scrotum after a few days of Tiger Balm and/or Papaw ointment.

(03-04-2013) Application of Tiger Balm after cleaning the skin with Sorbolene to remove large flakes of dead skin. Tiger Balm helps blood flow and white blood cell congregation to the wound area and kills/retards bacterial growth. Also a good icing is best after a clean up to rid the area of any bacteria that may be present before application of any healing balms or ointments.

Robbie always sits on pure cotton cloth nappies or towels that have been tumble dried for softness. His skin must be treated like that of a new born's. Once he's all healed a moisture barrier of zinc and Castor oil or routine papaw ointment is pretty beneficial. Have learnt the past few days that with Robbie's worsening skin condition it is essential to have rolled up cloth nappies between his creases for extra absorption of any body plasma or sweat that is a breeding ground for bacteria or prevents the necessity for the sores to be kept as dry as possible as it is not possible to air the area due to the strong contractures of his hip's tendons.


Monday, April 1, 2013

Psoriasis on Robbie's scalp is a real pain in the butt. So for easier maintenance it's best to have a shaved head. Robbie's usually bald. So off with the locks again and a warm hat with the approaching winter.

After being attacked with the scissors.
Lathered to soften the dead and flaking skin; a good massage with finger nails follows.
Flannel down and dry. Lather up the clean skin and bring out the razor that will not clog up now with the previous skin debris.
After a good rinse with wet flannel making sure all the Sorbolene generally used to wash his scalp is removed a saturated solution of Bi Carb is applied over his entire head and neck a couple of hours later to raise the pH of his skin.
Usually a fine powdery look is present once the Bi Carb has dried. All Robbie does after a shave is go to sleep to recover from the trauma. His form of cerebral palsy makes his entire skin surface sensitive to touch.

We both hate clean up time. Tomorrow might tackle his teeth.
Left foot's toe nails after being cleaned and cut. Rob hates his feet being touched as they are super sensitive, so it is a nightmare having him allow me to cut his nails. So left until so long they get snagged on things and he has no choice. He also has nail rot. Which nearly cleared up till he ended up in hospital again with no treatment as a doctor concluded he didn't have nail rot. So back to the drawing board. Fortunately his finger nails aren't a pain or rot issue. Pure alcohol, Tiger Balm or a strong solution of pool chlorine have been treatments used successfully. At one stage he had rot in seven of his toes nails. 
 Right foot is more sensitive then his left as severe cellulitis of the foot a couple of years ago while in community care damaged his skin's nerves. Note the wart-like skin growth to the left of the cut nail probably a result of pressure over the years as Robbie's big toes are positioned slightly under neighbouring toe. Above Robbie's toes have been slightly spread for the photo.

Above is the natural toe position. 

Big toe nails after application of Tiger Balm.

Even gentle brushing against Robbie's feet is painful. When he has no choice but to have a foot clean his feet jump all over the place or shake violently and have to be firmly gripped. So being in bed is a painful experience for his feet, knees and hips.

Updated 04-04-2013