"O, to be in CHINA"
 

Wouldn't treat a dog the way some of the doctors are treating the disabled and their carers here in Australia. Help me! Help us!

What words other than cruel and inhumane could describe any doctor stating that it was not important that I be mobile and capable of independently rolling myself over in bed. Or mobile for any other activity either. That an amputation of my painful, useless, dead weight lower legs was not going to happen though there are doctors wishing to do this for me.

But, as I am part of the public medical system here in Australia, I am prevented from accessing this life changing surgery. And it seems Hon. Jillian Skinner, the Health Minister and the HCCC (Health Care Complaints Commission) have turned their backs on me. As they have on others. For it seems they are controlled by a handful of powerful doctors suggesting they 'drop it'. She recently commented on the bullying within the medical profession but nothing much has or will be done about it. Just all talk as it seems the rot has spread too deep.

Many severely disabled in Australia are deliberately confined to wheelchairs as it is so much more 'convenient' for those on pay roles to 'care' for someone like me. I do know as I've experienced out of home care environments. Denied proper physio and medical treatment that leads us to being more handicapped then we should be. Placing more burden on our family, friends and carers.

Too many handicapped end up institutionalised unnecessarily due to the lack of appropriate support. Some in the medical arena who I've met recently see no problems with my carer burning out and being forced to place me permanently in a home where these professionals admit I'd not receive adequate and/or appropriate care and die early. I don't mind dying. In fact, with all that is happening and apparently not going to happen, I want to die. I just don't want to die a painful undignified death like so many others before me who could have lived. I don't have to be institutionalised and die if only I was allowed the medical treatment suggested by a world leading orthopaedic surgeon.

My carer has told me on several occasions that he wishes he could take me to China and stay there. For in China there's world class treatment for those with cerebral palsy and deep respect for those caring for the handicapped; they actually get support. Russia sends annually 60 children to China for treatment and has been doing so for some years now. http://cpcerebralpalsytreatment.com/russian-children-with-cp-travel-to-china-for-treatment/ But here in Australia only a handful of children get what they really need within Australia. And the adults...well, that's solved by just employing more people who generally don't know how to handle those with cerebral palsy; just take them shopping and on outings - while remaining totally wheelchair bound - instead of combining outings that would actually have them physically active in some way to decrease physical degeneration cause by physical inactivity.

I just don't know what to do. I feel so helpless and powerless in a country that professes to be so free and care so much for it's vulnerable when it doesn't. Hon. Jillian Skinner and HCCC, please, break the silence. Help me and so many others.

                              

 

 

Above images are of me as a youngster. I was so active; arms so strong and straight. But I did not receive any appropriate physio as I grew older. Just placed in a wheelchair. I want my life back.

 



So presently my desires and dreams to become a volunteer and get out in society is far away and may remain so. Instead, I am now mostly confined to home watching TV and playing on my iPad. No, I do not like being a couch potato and neither does my carer. I so loved climbing up and down stairs and playing on the floor as a child; interacting. All that was taken from me when some professionals at my school advised I be placed in a wheelchair at the age of 12. From that point I lost my mobility and became a prisoner of my body that quickly seized up and a prisoner of wheelchairs.
 

 PHYSIO AFTER TENDON AND MUSCLE RELEASE
 

Robbie's been home now for four days.

Two days after removing the stitches between his legs that were cutting into his flesh the incisions have nearly healed. So tonight he had his first major physio.

 

We took away the arm supports to allow for Robbie's legs to hang over the edges of the crocheted wheelchair cushion. His feet are heavily padded as they're extremely sensitive and are causing all sorts of problems interfering with positioning and they're sensitive to touch as always. Knees also heavily padded so the straps do not dig in. The orange objects are heat packs. When stretching someone with cerebral palsy it's vital massage areas be warm first. Even abled bodied people should be heated up somewhat before any massage. More so the disabled.

 

 

Heat packs still in place - under the purple top - I gradually begin deep, slow and gentle tissue massage of the tendons and muscles. As seen in the photograph, Robbie's legs can be separated over 90 degrees without too much pain. After the massage the stretch pain level had dropped - on a score out of ten - from a 7 to 3 in his left leg; a 6 to a 2 1/2 in his right leg. Never have someone with CP wreathing in pain!!

 

During separating his legs he was also stretched back - reclined - as far as possible resulting in only mild appropriate stretching pain. This he thought would cause incredible pain but instead actually reduced the pain in the tendons. Surprised me also. Everyone is so different.

 

Robbie had been complaining of a lot of pain in his lower back for the past few days. After this first serious physio, heat packs and massage he says the back pain is barely there. I believe that perhaps Robbie's hips were out of place somewhat and may have been causing sciatic nerve pain. Opening his legs and laying him back may have aligned hips and spine. All good so far. Will do this daily. During physio he may rest for five minutes occasionally when he needs in order to reduce his body suffering too much trauma that will result in contractures and spasm. Length of physio is decided by his body.

 

See the surgeon on six weeks time.

 

Today he's not asked for any pain killers!!!

 

 

Above: Robbie's legs before the percutaneous tendon release performed early June, 2013. Legs crushed his penis causing pressure sores on it. And it was impossible to reach him properly to clean without wrenching his legs apart causing agony and damage to the skin while cleaning.

 

 



RECOVERY DIARY

 

 

Above: Two days after the second tendon release, 18th July.

 

 

Above: Six days after operation. "This is the most painful and uncomfortable stay I've ever had in hospital", Robbie said today. And it looks it.

 

Robbie feels betrayed as there was no tendon release as agreed upon by surgeon of the top legs' tendon or any consideration at all of minor ligament release of the hip joints. Again, reason being fear of causing pain due to short femoral nerves and short blood vessels. Something Robbie was not worried about and repeated this over and over to the surgeon and others. He said he'd risk the pain over more years being confined to his wheelchair and unable to sleep painlessly in a bed. He wants to die so he has nothing to loose. His wishes, as usual, fell on deaf ears.

 

Instead, there was more tendon release of the tendons between his legs that had not been discussed prior, and a lot of muscle cut that controls the lifting and lowering of the upper legs which had been discussed and agreed upon.

 

Right side incision.

Left side incision.

                                     

[Two days ago, 26th of July, I had to remove Robbie's dissolving stitches. They weren't doing much dissolving and were cutting into his skin causing one incision to show the first signs of infection. After they were removed I lanced the infected area until red healthy blood appeared and iced both areas. Today, 28th July, the scars (above images) look great and nearly totally healed and dry. For two days after removing the stitches I've also placed cloth nappies between the creases and on the incisions with no creams or ointment. And again iced the areas.] 

             

              Though Robbie and I are very pleased with the second round of surgery's success regarding a wonderful range of side motion from left to right for each of his legs there is still huge difficulty in cleaning the creases between his gut and thighs. Today, 20th of July, I had a terrible time trying to clean him and the skin is still not able to breath properly. It is a battle to keep the psoriasis at bay with broken skin being a concern with pus filled spots, particularly on the right side under the colostomy site which was our main concern, and the main reason for us to undergo the second round of surgery.

 

Again, he was told he is not going to have an amputation above the knees so he can be mobile.  In fact, he was told it was not important for him to be able to roll over independently. How kind of some in the medical profession. And that such an amputation would ruin his balance. Robbie has over and over again explained he has no balanced anyway and is strapped in his wheelchair both at the top of his knees and at the chest which will remain the same with or without his lower legs.

 

 

 

With the knowledge that a world leading private orthopaedic surgeon - who has interviewed and examined Robbie - is willing and wanting to help but is presently not permitted or able, he feels his life is, as always, being controlled and destroyed by public doctors who just do not want to help him and others like him who have useless limbs that prevent mobility. It is not a matter of can't help but won't help. Non of the reasons put forth by reluctant doctors not to amputate are valid. Robbie meets all the legal criteria for such a recommended amputation. So for Robbie it is more months of unnecessary crippling pain, physio and confinement to his wheelchair; building on an already huge distrust that anyone really cares about his present welfare let alone future. And why should he trust when so many over some number of years now have advised me to place him in a home and forget about him.

 

More to report on Tuesday, 23rd July. Stay tuned.

 

Yes, I know today isn't the 23rd. The above image was taken on the 20th July. And today, the 22nd of July it didn't look much better. Tomorrow I'll have to take up our large ice cube to cool the area; place some soft cloth nappies between the creases like I was doing several months ago. Dry up the plasma and stop the skin touching itself and put the usual Castor oil and zinc cream as a barrier. Robbie naturally can't wait to get home nor can I. Hospital stays are always a nightmare. I've been up to see him everyday to keep him in position correctly; see to his stubborn psoriasis and deal with the colostomy and urodome. Tomorrow is going to be a very busy day.

*************

Yes, 'tomorrow' did prove to be very busy. So much so that I've had no time till tonight, 28th July, to update this post.

 

The redness under Robbie's colostomy is still red but as not as angry. The cloth nappies seem to be helping along with the application of a large ice cube. Pictures taken on the 26th and 28th July.

 

Fortunately, Robbie was well enough to leave hospital on Wednesday 24th July. We'd both had enough. One nurse saying and telling some of the staff that Robbie did not have psoriasis. Another that he did not have understanding problems on her first meeting with him and reducing him to tears. And one thinking I was only cleaning Robbie every second day when I'd been up everyday to clean and dress his wounds and groin area to make sure he was cleaned properly. As the top of his legs are still very difficult to clean without damaging the skin and causing a great deal of pain trying to straighten out his hips just enough to get to the areas needing cleaning it is not fair on anyone to do this. Anyway, no one is willing to inflict the pain on Robbie or risk damaging his skin in order to clean and dry him properly. That has and always will be left to me and neither of us expect anyone else to do it.

 

One of the nurses said Robbie was allergic to the tape I've been using for years to keep the colostomy wafer from coming off and the poo in when they pancaked. So she redoes what I had done the previous day; refusing to put the tape on and leaving out any pads or cloth that stop the creases touching and helps keep the area dry. So four hours later I had to put tape on as the poo was already creeping under the wafer. Remove soggy skin from all the sweating and plasma weeping from the rash. And put pads back to combat access moisture.

 

But now Robbie's home. The nappies are in place. The soggy skin's being kept in check; wounds nearly healed; and the redness under the colostomy is dying down.

 

 

Above: Under colostomy 30-07-2013

Keeping area dry with cloth nappies. Robbie's face has also broken out and is being treated with solution of bi carbonate and responding well. The stress of the past month both due to having had the flu and then the surgery may have triggered the psoriasis. But even without the sickness and trauma Robbie has severe outbreaks of psoriasis that generally respond well to bi carbonate of soda. I may have to dust some powder onto the colostomy area affected as a solution of bicarbonate will not aid in drying out. At least today there was no plasma weeping out.

 

FURTHER SURGERY

 

I am thrilled!! After further consultation with the surgeon who performed the percutaneous tendon release two weeks ago he has agreed to do further release due to the great success of the first surgery. This time at the tops of my legs in only four weeks time!! I can not express how happy this has made me...and Sam.

 

I'm still free of the pressure area on the lower right side of my back and no more crushed penis.

AFTER PERCUTANEOUS TENDON RELEASE

 (Most pictures taken while Robbie's in his wheelchair as that's his 24/7 location)
 

 

Before.

 

Twist very noticeable as is the bruise from the pressure area on the right lower back due to the pressure of being pushed against the back cushion.

 

 

After.

 

Black marker as guide. Hardly any twist. Pressure sore has healed with no bruising presently. Also sores under the right upper thigh have totally healed. Skin all good in tendon release area, butt and back.

 

 

Before.

 

By observing the chest and knees from above the twist is also very clear

 

 

After.

 

Considerable change of knee alignment.

 

After.

Legs parted by straps but not causing as much groin area pain as pre-op which limited the amount and time of strapping. Feet almost level due to post operative strapping holding down his left knee that rises and travels to the left due to shortened Iliofemoral ligament and abductor contracture. 

 

Now to discuss with orthopaedic surgeons possible partial tendon release of abductor muscles and partial Iliofemoral ligament release to help reduce contracture range that force Robbie's knees toward his chest when horizontal as shown below.

 

 

Due to shortened nerves and blood vessels in the Iliofermoral area due to Robbie's legs never having experienced total straightening there has been some concern from a surgeon of the legs dropping and causing more pain as the Femoral nerve and blood vessels are stretched. But since Robbie sits 24/7 the legs will not be dropping. The only time his upper legs would be subject to extension or 'dropping' after any partial tendon or ligament release would be during gentle physiotherapy on the floor or bed. Over a long period of time and appropriate physiotherapy the nerves and blood vessels would stretch to a lesser or greater degree. Robbie's own mobility expectations would not subject him to long periods of unbearable pain that would only make him more tense and have a detrimental effect on his progress forward. He and I are rational about what can and can't be achieved due to any possible anatomical limitations that could be totally or mostly irreversible and that have been caused through 40 years of living with cerebral palsy that was not appropriately addressed as a child.

 

The partial tendon release performed on the 4th of June helped separate his legs to improve access to his groin area and reduce his penis being crushed. But the problematic Iliofermoral ligaments hinder access to the creases between his torso and top legs and cause incredible pain when strapping his legs down and tilting him back to reach this area for cleaning. The tight top tendons of the abductor muscles naturally make access to his colostomy - that is directly above his right leg - very difficult and contractures have often compromised it by crushing and causing leakage.

 

Also, the extent of Robbie's osteoarthritis must be clarified in order to conclude how much this is limiting the flexing of his hip joints, if any. Could the problem be solely a very shortened and tight Iliofemoral ligament that has become so tight that even under anaesthesia it's not possible to straighten his hip joints.

 

 

 

 

 

 

 

HICCUPS (HICCOUGHS) CURES

 

• Iced water - successful
• Slow breathing in and out of plastic bag - successful
• Teaspoon of sugar - successful
• Acupressure - yet to be tried but optimistic it will work

 

Though hiccups are generally just inconvenient and of no concern and dissipate after a few minutes for the average abled person for someone with Robbie's particular cerebral palsy they can continue for some considerable time and become down right dangerous.

 

It was only a few days into caring for my friend that he had an attack of hiccups. I assumed they'd go away after a short time just like most anyone else. But no. They kept on and on for some minutes until he vomited all over himself and started choking having inhaled a small portion and also filling his nasal cavity. I ripped off his tray that's attached to his electric wheelchair all day as the vomit flowed down its sides and all over my hands but I had to get him to lean as far forward as possible and slap his back with cupped hands. This was when I also found out that Robbie needed encouragement or 'reminding' to cough and instruction on precisely how. Initially he just sat there choking, not breathing with apparently no instinct to cough. I yelled at him to cough as I frantically cupped his back and coughed myself to show him what deep, heavy coughing was like. He weakly coughed and I yelled to do it heavier and not to stop like he kept doing.

 

After his lungs seemed clear again I set about cleaning all the mess up. But he started hiccupping again. He said he'd heard that drinking ice cold water could stop hiccups. This made sense as hiccups is the process of diaphragm spasm. So a shock of ice water just might work. I filled a two litre jug with all the ice cubes we had and cold water and stirred. Then had Robbie drink as quickly as much as he could without taking a breath. All the while hoping he'd not vomit again with such a large volume of fluid intake. But with a sheet at the ready I was prepared as I wrapped it around him and his wheelchair. He gulped down about a litre and I stood back. IT WORKED!!

 

So from that point on I made sure we had an ample supply of ice cubes and that as soon as he started hiccupping in the future he'd immediately gulp down as much iced water as he could in one hit. The only draw back with this is if the hiccups returned some minutes later his gut was full of water already and it made it incredibly hard for him to go a second round.

 

So another option was for him to breath into a plastic bag that I held firmly to his mouth and instructed him to take long deep breaths. This was a long procedure but generally worked and I usually used it after the iced water if the hiccups returned to save him trying to consume another large volume of fluid.

 

Both of these cures were fantastic but fiddly. But better than nothing and having Robbie choke on his vomit. Robbie didn't need to be hiccupping for long to vomit.

 

Then a couple of years ago while he was in community care one of the Pilipino staff was around when he had a hiccup attack. I asked for a jug of iced water. She said to instead give him a spoonful of sugar. She returned and shovelled it into his mouth. Incredible!! Instant result. I stood there staring; waiting for the hiccups to return but they didn't. We thanked Celia for imparting us with this vital knowledge that seems something so small to the majority of people but for someone like Robbie it is life saving knowledge and a load off my stressed out mind as a carer always on the alert for the next disaster or challenge that is all part and parcel of caring and living with someone with severe cerebral palsy.

 

Now I've also been investigating acupressure recently for the treatment of hiccups. After all, it can not be guaranteed that sugar will be handy everywhere we go unless we carry some with us. And that does not guarantee in itself that Robbie would be able to eat it as he increasingly suffers from nervous giggling that totally robs him of any ability to swallow. So discovering that a point directly behind the ears in that indentation just above the jaw bone is a fix for hiccups, nausea, morning sickness and travel sickness it will be the next cure to try when he gets the attack of the hiccups. I've read feed back on websites and it seems to work. I'm a strong believer in acupuncture and acupressure so I am sure it will also be successful for Robbie. When I discussed my findings with him I pressed on this area known as Yi Feng and he said he felt a sensation in the diaphragm region.

 

 

 



Percutaneous adductor tendon release.

 

 

 

Above: Operation site 24 hours after the percutaneous procedure performed on the 4th of June, 2013.

 

Due for review with orthopaedic surgeon on the 19th of June, 2013 to allow for healing and time for surgeon to consult with a world leading cerebral palsy expert regarding the outcome of the percutaneous tendon release and examination under anaesthesia. Expert or not he or she has not even met Robbie, let alone examined him. Note all those with cerebral palsy present differently so Robbie and I do not know the rational of consulting with a surgeon who has not examined a patient personally.

 

Groin area only slightly more mobile and accessible. Not that Robbie and I held any high hopes; that was why Robbie originally refused the procedure and sought a second opinion from a world leading orthopaedic surgeon as he knew a partial tendon release in the groin area was not going to make any difference regarding being able to sleep on and sit up in a bed. The procedure was mostly experimental and exploratory and the performing surgeon told Robbie that he was only interested in making his groin area more accessible for hygiene reasons and no other. Robbie had little choice. Without the procedure no other surgeries will be considered.

 

We wouldn't mind jumping through unnecessary time consuming hoops complements of a public medical machine spinning red tape set up by a handful of controlling doctors if my health was good and Robbie's spine was not fusing from physical inactivity. Excruciating back pain is now the result when he tries to lay flat. Something he or I do not need on top of the already painful contractures he has suffered since the age of 12. Irreversible spinal fusion that will worsen the longer the recommended double amputation just above the knees by a respected world leading orthopaedic surgeon is delayed. A surgeon who thoroughly examined Robbie physically and held a long conversation with Robbie to confirm why - and for how long - he has desired to have the removal of his legs that Robbie knows will allow him to gain mobility and some time out from being confined permanently to his wheelchair. Time to move around with a modified walking frame (even if it means shuffling on his butt); roll around on the floor with his companion dogs. And ultimately - at the age of 40 - see his dream reached of again being able to sleep in a bed.