Complications associated with cerebral palsy

WARNING!!

The following are very graphic photographs. But they are necessary to save my life and, it is hoped, that of others.

Head

In an attempt to kill myself I drove my electric wheelchair down a

flight of stairs in the Royal Darwin Public Hospital during April 2009.

This photo was taken some days after having the stitches removed. A permanent reminder of the public psychiatrist I was under who refused to write on my notes that I could be a danger to myself as he only believed I was playing games and he was not going to fall for them. So the nurses ignored me when I said I felt suicidal. During the 13 months of hell in hospital I only saw him when I was first admitted and not once after. I have a grin on my face when in pain due to the cerebral palsy making my facial expressions distorted. I rarely look as though I am in pain and thus ignored or disbelieved. This "cerebral palsy smile" - as Sam calls  it - has often prevented me receiving vital medical treatment for life threatening problems. I often involuntarily look around when in pain or when holding a conversation, so the lack of immediate eye contact also throws people regarding my emotions and responses to my immediate environment. I drove down the stairs due to unbearable pain in my hips as the staff could not properly position me in my wheelchair and also it was decided to change what I normally sat on thus made my cushion harder.

These pus filled sores that attach hair follicles I acquired during an 11 month stay in a shared accommodation situation. Took some weeks to heal as staff kept forgetting to treat them. Treated by removing the pus and then icing the

area to kill any bacteria. Then smothering my scalp with a saturated

solution of bicarbonate of soda.

Teeth

I have spent the last 12 years sleeping in my electric wheelchair as

the pain in my hips is unbearable when in a bed. The tendon contractures make my legs twist and force my bones to rub together. Often it feels as though my legs are being ripped off. And now at the age of nearly forty I am also suffering arthritis in the ball and socket. I suffer clonis which makes my legs vibrate and twitch which can and does keep me awake. My atrophied legs prevent me sleeping on my stomach. I can not sit up in a bed without my legs causing

me excruciating pain and my heals and toes dig heavily into any mattress. I can not drink or eat safely when in bed either. I must be in my wheelchair or I can and have choked on my food or drink. I must never be left alone with food or drink even when in my wheelchair. But some still do not believe I can choke and have left me unsupervised which nearly killed me once. Our dog, Russell, barked his head off to let Sam know I was choking and had turned purple. The carer had disappeared!!! Returning from outside after she heard Sam angrily calling for her - along with Russell's frantic barks - the carer said she thought we were 'joking' about my choking risks.

As a result of sleeping in my wheelchair for 12 years my bottom jaw has moved forward. I once had normal jaw alignment. My very back teeth touch when I bring my upper and lower jaw together but, as seen from the photos, most of my teeth do not come together. Now I find it hard to bite into and chew food. But eating sloppy food is even worse as I do not have normal tongue control like most able people and I've had several unfortunate arguments with some, but thankfully not all, speech pathologists who have insisted I only eat pureed food when in hospital. Which then makes my jaw muscles weak through lack of exercise.

Pressure Areas and Sores

 

This wonderful example of a pressure sore came about when the manageress
of the shared accommodation I was in at the time rightly placed a special plaster over a very small sore. A community nurse insisted to see the sore and tore off the plaster along with a 10 x 10 cm area of skin!!

Lots of pressure areas on my butt. I never get pressure sores when at home.
I dread going into hospital or under any so called care facility. If Sam dies I am
DOOMED!!!



After being confined to a bed for two weeks while in hospital recently
I developed this pressure area within hours of being place back in
my wheelchair. A couple of the experts had decided the cushions and anything
else I sat on at home was not appropriate. But in the end it was decided
upon that I could sit in my wheelchair like I did at home as I was in danger of
developing breathing difficulties and lung congestion. Plus it was near impossible to feed me safely in bed. By this time the twist in my hips had worsened due
to the pain making my body more tense and thus the contratures worse. And by this time I was now on heavy pain killers that I did not need when at home.

Yes, this is my poor little penis. I wear urodomes (external catheters) as I was born with a neurogenic residual bladder. My sphincter muscles do not work properly as with all my muscles. Unfortunately, as my legs crush my penis I sometimes get pressure sores in this sensitive area. Sam found a way that I could still wear urodomes during these times if the sores were not too bad. He covers sores with two ply tissue or two layers sterile cleaning cloth with a little bit of papaw ointment making sure not to get it on any skin only the sore. Papaw acts as both a water barrier and healer. Two layers is important as the chosen material will not stick to both the sore and urodome and pull off any scab that has formed. Carefully nick a small hole in the urodome above the material so the sores can breath and keep dry. Then fix the urodome down with some medical tape making sure non of the urodome has rolled back forming a 'ring' like found on balloons or this in itself can cause a pressure sore/area. We also ice the sores and make sure my skin has been cleaned and dried thoroughly before rolling on a new urodome in order to kill bacteria. Generally one urodome will last four days while at home before needing changing. In hospital they only stay on with tape. But even then they tend to leak. I do not get cleaned like I do at home so the urodomes do not stick enough.

Stoma

Sometimes my skin rejects the wafers for my colostomy. I then have to have
cotton nappies packed around the area with liners so the nappies do not get too soiled. With ice treatment it is only a couple of days before I can wear my bags again. But with every wafer change the stoma area is iced sores or no sores, rash or no rash. Legs also interfere with the colostomy. Medical tape applied around the edges of the wafer helps keep them on.
Psoriasis



I suffer chronic severe psoriasis. I used to keep my scalp shaved as it is easier to treat.


Really, really itchy. Psoriasis gets into my nostrils, eyebrows and inner ear.



Until I went into care outside my home environment I only suffered psoriasis on the face, scalp, a small patch between my shoulder blades and inside the ears. When a couple of community care staff members refused to follow my skin care routine the above resulted and my immune system has never been the same.


Right lower back. Combination of pressure areas and psoriasis.

More of the same. Note most of the psoriasis is to the right where the twist in my hips pushes me against the back of my wheelchair. Yes, again this happened while in community shared accommodation. It is very difficult to position me correctly. Just a couple centimeters out and I am in pain both through pressure and ball and socket of hips rubbing together.



After three days applying a paste of bicarbonate of soda the area has nearly fully recovered. With psoriasis the skin regenerates very quickly. Note the old dead skin peeling off. We always keep a close eye on any areas treated with bicarb as it can dry the skin and cause cracking. Before this happens we lay off for a few hours before applying more. Also applied sorbolene when not using bicarb. Zinc and caster oil is also very good we have recently found out. My skin in some areas is as fragile as a new born so baby lotions are generally good.

Waxy ears


My ears produce so much wax that we invested in our own otoscope. Sam learnt how to safely suringe the wax out with warm sterile water or we'd be endlessly visiting doctors. Once the wax is removed a good soaking in witch hazel is highly beneficial as an antibacterial agent. NEVER stick cotton buds down to the ear drum. Only use to remove easily accessible wax. I've not needed to see a doctor about my ears for over ten years now.

Fragile skin

This is what happens when my butt is not treated like a baby's bottom!! Again, a staff member with attitude refused to follow my skin care plan and rubbed me raw. It was so bad that I left a puddle of plasma that had dripped on the floor when I was suspended in a hoist. Then one of my favorite and cooperative care workers helped Sam ice the area.



Followed by a heavy application of bicarb.



After a few days of the bicarb and sitting on my soft cloth nappies - that require a drier to make them softer for my baby bottom - everything is nearly back to normal.

Cellulitis



We've no idea how I got cellulitis while in shared care. Sam visits me and three days later he's presented with this!!! Sam immediately submerged my leg in a bucket of water filled with ice. The cellulitis was travelling up my leg. Sam stayed the night to keep an eye on me but though the cellulitis was stable it needed more than ice and he took me to the hospital where I stayed for four days on a drip and endured the agony of being in a bed. But I was so doped up on medication it helped dull the world. It was apparently one of the worse cases of cellulitis presented at the hospital.
 



Back view.



Photo of feet just after my first soak in the ice bucket. I am bleeding as Sam nicked the skin to relieve some of the pressure as my skin was about to tear open from the swelling.



After a day in hospital. The purple line marks where the infection had reached when I first presented at accidents and emergency so the nurses could monitor how quickly the infection was spreading.

Foot after a couple of weeks. The cellulitis was nearly the final straw for both Sam and myself. But now he had no choice but take me out of shared accommodation care as the final straw that broke the proverbial camel's back came in the form of one of the staff members continual bullying of me and threats to call security to have me removed if Sam reported him.



"Prune foot" after the swelling had gone down.
 

My foot over a year since the cellulitis showing the tissue damage.

Nail rot



Decaying flesh

Rotting flesh between my legs and belly that needed removing daily. It developed in October, 2012. In an attempt to clean me daily from this ailment Sam re injured his left arm battling with my legs and had no choice but to place me in the hospital for treatment and care.



This is immediately after removing the rotting skin. Only to be replaced with more decaying skin the next day.

Tendon release
 


This is a fine scar at the back of my heal left from tendon release as a child. I also had tendon release behind the knees and groin area as seen below.



Tendon release of groin area leaving depression that
traps sweat and makes cleaning accessibility difficult and painful.

Above three photos showing scars on backs of both knees from tendon release.

As physiotherapy did not follow the tendon release surgeries to keep my tendons and muscles lengthened my legs are now atrophied, stunted, a dead weight, extremely painful and have robbed me of mobility that I had as a child. My life could have been so different if been given the proper and appropriate care.

Weight gain



I was very thin. But due to my leg atrophy, hip pain from arthritis, ball and socket grating together I can not exercise (and Sam had been a little overgenerous with my food). I was about 57kgs in 1994. I am five foot long. Here I am 77kgs. I tried to loose weight while in hospital for 13 months in Darwin and again while in community care for 11 months but staff in both places would not help me stick to the diet I had asked for. And so I didn't loose any weight. I am now about 67kgs after being back with Sam again these 18 months and hope to get down to 55kgs or less.

 A little less chubby today: 01-01-2013.

 Frowning

Or trying to.

Bed torture



Yes, this is my body position while in bed. I can only sleep on my left side when I am in a bed and I have to be packed with numerous pillows to keep me in position. I want to sleep in a bed so much but my legs just wont let me. Heavy doses of pain killers and relaxants do not help much and are certainly not a solution.



This is me fast asleep in a hospital bed at home after being sent home from hospital after a traumatising eight week stay. Left with no home help, and faced with our part of the world coming to a grinding halt due to Christmas and New Year, Sam did not get me out of bed the next morning as he was unwell and still not fairing to well now. Presently he has two fractured ribs due to brittle bones and an injured left forearm muscle due to myopathy. And his degenerative spinal disease is not helping matters. He tried to feed me in bed. I vomited violently as a result. Food from the previous day came up as I'd not been able to digest some of my food properly due to stress and pain. Later Sam placed me in my wheelchair where I have stayed since. I'm again off the heavy pain killers, thankfully, as I was having to drink strong coffee all the time to keep me awake as they made me very drowsy. Coffee makes me edgy and irritable. Just can't win.

And I shall remain in my wheelchair it seems until I have the help I have asked for but have been denied. I need my legs removed. I've wanted them removed since I was twelve. I shall keep asking. I want to live. But not like this. My only regret about driving down the hospital stairs to end my pain and life back in 2009 was that I failed.

XXXXXXXXXXXXXXXXXXXXXXXX

Rob's in hospital again.
 

The above's a picture of the blood and plasma left from Rob's oozing back and butt sores two days after being taken away from home on a stretcher by ambulance on the 7th of January, 2013.

CLICK HERE

Link above connects to Rob's more casual site for further explanation over him yet again landing in hospital.
Regards, Sam Davies. 19-01-2013

CEREBRAL PALSY AWARE WEBSITE