PHYSIO HELL

Here's Sam giving me a massage to loosen my upper leg tendons. And yes, he's qualified. It's excruciating. This is what I'd also have to go through for the rest of my life if I had surgical tendon release which I had as a child and it failed as physiotherapy was not given post op. At the age of 40 my legs are now deformed where as a child they were still viable. I've been offered a repeat of the surgery. But at the end of the day I'd still have useless legs with a life that revolved around taking organ damaging and toxic, heavy doses of pain killers; muscle relaxants (that make me drool and loosen my throat muscles increasing my choke rusks); and excruciating painful physiotherapy as my legs are now deformed and not viable. 

Without my legs I'd not have this hell to go through presently. Nor would I be bed ridden as I am now. Nor would I be suffering the potentially deadly skin problems I am having. Pressure sores and skin infections kill hundreds annually and now I am just waiting my turn. Nor would I be stressing all those battling to care for me and are traumatized by seeing the pain I am in everyday all day. Sam, who's had to deal with this for nineteen years, can only do and take so much, and I can only continue to wish I were dead. 

Shame the surgeon who had the final say on my fate and has condemned me to this existence of hell isn't given the assignment of looking after me for a couple of weeks all by himself without any help and see what the Hippocratic oath not to harm really means. 

 

Bow Pillow

 

 

Here's me and my huge bow shaped pillow that I share a bed with 24/7. It's necessary to keep my legs spread so my legs' ball and sockets don't rub together as bad and thus ease most of my pain. 

 

Unfortunately, the pillow must be right up to my stomach. Which then causes my colostomy to become crushed at times and leak poo over me and my bed when my legs start to contract strongly and push my pillow harder against my stomach.

Behind me I need additional pillows to keep me on my side as the contractures in my legs cause my hip to twist. When I end up on my back I am again faced with the ball and socket in my legs rubbing together and also the pain triggering more contractures like a domino affect.

Another draw back with my pillow is my urodome (external catheter) being crushed and leaking urine so it needs regular checking and precise positioning by Sam. I do not wear nappies at home as this would have me laying in a wet nappy most of the day. Nappy changes are also excruciatingly painful.

In the above photo I am also wrestling with a book as I've not much room to maneuver due to the large pillow. But I have little option now that I've been condemned to a life in bed.

 

 

 

I'm still waiting for my problematic electric wheelchair to return from repairs. So I can not sit in it. But even when I get it back I will only be able to sit in it for a couple of hours as I now have a tender spot on my upper right butt (above). This tender spot I developed a couple of months ago after the worsening twist in my hip forced it heavily against the back of my wheelchair. And even though it's had no pressure on it for many weeks it has not recovered and left me with very fragile skin.



On the 1st of November, 2012, I attended a lecture by an ortheopaedic surgeon, Dr Munjed Al Muderis
(http://www.almuderis.com.au/), regarding a little known proceedure called osseointegration that's been used in the rehabilitation of amputees for some years now but has had little publicity. Osseointegration is absolutely facinating and definitely the future way to go for many lower limb amputees. At least that is my opinion and the opinion of a growing number of surgeons and amputees themselves once they see and experience its incredible benefits.

The prosthetic leg has progressed from the wooden peg leg, that is often associated with the pirates of the seas, to the more advanced false leg with bending knee and/or ankle rising from many a bloody war and the need to rehabilitate, if possible, those having lost a limb or two. And from those humble beginnings such limbs were provided to most individuals in more wealthy countries no matter the circumstance of limb lose.

Prosthetics over the past couple of decades have become incredibly light with technology allowing for the manufacture of very light materials to replace prosthetics made of heavy wood or other such heavy materials. But - and it is a big but - lighter materials have not made the commonly known old style prosthetics more user friendly. Eventhough modern prosthetics are light they do not overcome negatives like reducing attachment time; can and do fall off so do not give the wearer a sense of security. Often friction between the amputees stump and padding cause itchiness, irritation, rashes and/or pressure sores; accessive sweating and, infact, in many cases can even make the amputee less mobile. Osseointegration overcomes most of the negatives of old style prosthetics.

Put simply osseointegration is the insertion through thoroughly planned surgery of a titanium-based rod into the hollow cavity of a remaining limb's stub bone and after a stage two surgery an extension is added so it slightly protrudes externally. http://www.osseointegrationaustralia.com.au/ The rod is left there for several weeks to allow for real bone to grow into the titanium-based rod's microscopic mesh-like material and fuse as one and thus becoming a stable and strong internal anchoring for a future external easily attachable and detachable light prosthetic. Attaching the now fused rod to the prosthetic only takes seconds - and seconds to release - instead of the many hours eaten up weekly maintaining and securing a less secure old style prosthetic. No more pressure sores and rashes or falling off of the prosthetic. I was blown away!!

The only real down side at present is the cost to an uninsured amputee. Or the fact that the permanent open wound (stoma) around the rod must be kept clean and may weep a litte so is not suitable for all amputees. But for those using this wonderful technology the negatives are nothing in comparison to the alternative. Many have returned to work and participate in activities they could only dream about. And any infections, which have been remarkable low, arising from such a proceedure have been successfully treated and overcome if that is a concern to some.

Before knowing about osseointegration I'd often wondered why those with useless or badly deformed legs were not generally given amputations and false limbs used if cosmetic concerns were an issue. A removable false leg that can not fall off, such as with osseointegration, is far more preferrable than a dead, useless leg of flesh that inhibits an individual's mobility and may be a cause of extreme pain and increases the risk of morbidity and mortality due to pressure sores and associated complications.

Though this proceedure is initially expensive and would only be appropriate for adult past the growing stage and uncompromised bone structure the money would be recouped over several years due to an individual being able to return to or take up paid work or become partly or totally independent and not relient on tax funded care and assistance through an already strained and very inadequate health system.

The opinions expressed in the above essay are my own and that of Robbie's and may not necessarily agree with the opinions of those associated with rehabilitation of the amputee.

Thanks and keep safe,
Sam Davies.

 

 

 

OUCH!!

 

 

 

 

 

I'm not having a very good day today. I can't straighten my legs at all. So much pain. The Baclofen isn't working. Sam and the carer had a hell of a time trying to clean me today. I feel so miserable. I keep thinking of all the things I could be doing. But here I am bed ridden. 

 



Hi, Dr. *******.
How much do you charge for a consult? I was hoping to hear from you. You seemed so eager to help my friend. If only to meet him and get an idea of the condition he is in. He did not have a thorough assessment while in hospital. Though it has been recorded that he did but was welcome to a second unbiased opinion which seenms we will not get. Rob is now bed ridden and has asked for a lethal injection. The doctors have left him with no hope. Just endless despair that I share with him. He turns 40 soon with nothing to look forward to except more years of preventable suffering. Please see him. He keeps asking for me to kill him and after 19 years of him asking this of me I am just so crushed. Please, who, if not you, can you suggest?
Sam Davies.

The above is a message Sam sent to a surgeon today. Not sure why he is bothering anymore. It seems quite clear the few powerful doctors who want to see me institutionalised, where I will end up dying, have won. One of my GP's warned us that if we tried to seek help the medical machine would crush us. The ones who want to help have no voice. No say. There is no Hippocratic Oath. If so, where is it. Definitely not considered valid for the likes of someone like myself. Yeap, a severelly handicapped cerebral palsied individual who could have a life.

I turn 40 soon with nothing to look forward to. Stuck in bed. And now the worsening twist in my hip due to contractures in my legs prevents me sitting more than a couple of hours in my wheelchair. If I take the medications to relex me a little I start to druel and my penis shrinks so much my urodomes do not fit properly. Having little choice Sam taped the last urodome on more than usual and now I've a sore on it. So have to wear bloody nappies for a couple of days. Thanks to the doctors that have signed, it seems, my death warrent for saying that removing my legs would course me more harm than good and would be of no benefit. How dare any of you who have not spent one day providing me with my physical care, let alone getting to know me, have the power to do this. The power to continue to ruin my life and that of those who want to care for me but are finding it harder and harder due to my bloody useless legs!!! Again, how dare you. And how dare you intimidate those who do want to help me.

I'm finishing now. I am just so lost for words to express my despair and pain. Until tomorrow, take care all.

To Ignominy and beyond

During all my stays in hospitals as an adult no one has asked in depth about my gross motor skills. I've had to offer demonstrations to both doctors, nurses and physiotherapists.  Which is generally just a brief demo of me reaching for the air when in a bed followed by verbal tales of my physical abilities, though limited. And it's even worse when I have to actually explain to doctors what cerebral palsy is!!!So it's pretty hilarious when I get a discharge report saying I have been thoroughly assessed! One of the common reasons doctors give for not wanting to remove my legs is that I will loose my balance. Wow!! I'd didn't know I had balance!! My legs offer no balance and twist to the left and with just enough up motion to topple me over to the left. So over the next few days I'll be posting to this site some action video clips. And the most ludicrous situation is when someone that has just met me and has not even laid a hand on my for evaluation tells me what my abilities are.

I am generally naked as trying to dress me is like fighting with a plastic doll due to my stiff limbs. Clothes get tangled and their creases dig into me; interfere with my external urodomes, colostomy and make my psoriasis worse as my skin can not breath. And now that I am house bond who cares.

In my video clips I wear a nappy to show what I have to wear in hospital or in out of home care. I also chose to bear my flesh so the full extent of my physical condition and movement can be seen.


Rolling Robbie...I wish!

Game of Thrones

I do a lot of reading. Presently I've just started on the Game of Throne series Sam picked up the other day. Unfortunately, as I have to have a huge pillow between my legs to reduce pain, I have to battle for reading space. Here I am flipping through a novel to find where I left off and use my left arm as a book rest.

Robbie sandwich

This second hand electric hospital bed raises both at the leg and head area. It is necessary as my legs can not lay flat. I can also use the controls which is fantastic as I don't have to disturb anyone to do it for me.  

PSEUDO SEIZURES

As the word pseudo suggests the above is not all that it seems. I don't suffer from epilepsy.

 Due to my brain damage from birth when I get stressed or overly happy my damaged synapses do not connect properly and I start to severely tremor. Sometimes outside stimulation such as massaging my scalp will help calm the tremors by stimulating other senses.
During these tremors I am fully conscious and can feel them coming on. I am never in danger of biting my tongue. Generally the tremors last for a couple of minutes but I have had to be taken to hospital a couple of times in the past to stop them. If I tremor too long I do not get enough oxygen and have had to wear an oxygen mask.

MY BODY. MY CHOICE

I want to LIVE!!! But not like this. Help me, please!

ANOTHER DAY

 

 

Today I had the joy of another day on my left side confined to bed. Did not wish to sit in manual wheelchair as that was rather painful and a relative waste of time since there was so much effort required to get me in the manual for such a short period of time.

So today I had the joy - not - of having my face smothered with Sorbolene cream, as seen above, as I've another outbreak of psoriasis as Sam had not applied a saturated solution of bicarbonate of soda on my face for several days. The cream softens the hard flakes so less painful when cleaned...and less blood.

 

And a shave.

And...oh, joy of joys, I've a mild ear infection in my right ear now that I've had to spend so much time laying on my left side. It's been years since I've had an ear infection!! But a few days of witchhazel will keep it under control till I can sit in my electric wheelchair again. And today was told my electric wheelchair just might be back from repairs sometime this week. But I wont hold my breath till it's here as sometimes (actually quite frequently) the poor wheelchair technicians have to deal with the unexpected coming up.

Had another painful massage of my groin tendons to try and keep me as loose as positible and make the best of a bad situation. While cleaning me today (with the assistance of a temporary paid carer who will come around four times a week for an hour to help Sam do battle with my legs) I ended up with the giggles as I exchanged jokes to help cope with the trauma and pain. Nothing like a good laugh (below).

 



 

FIRST HOSPITAL STAY MEDICATION LIST

(Eight week stay)

 

DOCUSATE SODIUM 50mg + SENNOSIDES 8mg

(coloxyl with senna) One tablet, two times a day.

DICLOFENAC (enteric coated) 50mg

(voltaren) One tablet, at night.

PANTOPROZOLE (enteric coated) 40mg

(somac) One, daily.

 

PARACETAMOL 500mg

(Panadol) Two tablets, three times a day.

 

PREGABALIN 75mg

(Lyrica) Three tablets, twice daily.

 

SERTRALINE 50mg

(Setrona) One, at night.

 

OXYCODONE 10mg

(Oxycontin) One, twice daily.

 

OXYCODONE HYDROCHLORIDE 5mg

(Endone) One, four times daily.

 

FENTANYLE 25microg/hour

(Durogesic 25) Patches. One every three days.

 

BACLOFEN 5mg

 

(Clofen) Two tablets daily.

=

One preventable large toxic daily intake. No thanks.


SECOND HOSPITAL STAY MEDICATIONS

(Three week stay)

SERTALINE 50mg

One nightly.

 

PANTOPRAZOLE 40mg

(Sandoz Pantoprazole) One nightly.

 

OXYCODONE 10mg + NALOXONE 5mg

(Targin Prolonged Release) One, twice daily.

 

CELECOXIB 100mg

(Celebrex) One, twice daily.

 

PREGABALIN 75mg

One, twice daily.

BACLOFEN 10mg

Three times daily.

  

=

 Not as large an intake of medications on my second trip to the hospital, but still; no thanks.

MEDICATIONS/REMEDIES WHEN HOME

 

IMODIUM

(Loperaminde hydrochloride 2mg) For diarrhoea (dx).

PARACETAMOL 500mg + CODEINE PHOSPHATE 30mg

(Codapane Forte) Presently on request.

IBUPROFEN 200mg

Two tablets nightly, for inflammation.

KAVA 2400

(Two tablets nightly if needed for stress and muscle spasm and clonis)

 

MAGNESIUM PHOSPHATE TISSUE SALTS

(Relief of muscle cramps, spasm, twitches and spasmodic pains. Also helps with my neurogenic residual bladder as my spincter muscle contracts and sometimes leads to urine retention. Found it very effective in my case.)

BACLOFEN 10mg

One nightly.

=

Note that I didn't take any medications before going to hospital. I ended up in pain due to incorrect positioning in bed while in hospital which worsened my contractures and twist in hip. I was originally hospitalised due to rotting flesh and psoriasis in my groin area due to legs making me difficult to clean and air. NOT FOR PAIN. Now I've no idea how long I can sit in my electric wheelchair that is presently being repaired and could be without for up to six weeks. Meantime I can sit in a manual wheelchair tilted back for about four hours before too painful. Then confined to bed again. The past four months in bed have not been kind to my body. BLOODY LEGS!!

 





 Blocker singing 'Bat Out of Hell' to me over 2GB radio.

 

 

 

 

Laughing

 

 

 

 

Listening

 

 

 

Thanks, Blocker.

This is one of the highlights of my life.



Returning home. 29-01-2013

Thanks, guys.

Laying on my home hospital bed on my left side playing with IPad keeping myself sane. Sam's spent four days by my side making sure I stay in position so I am in no pain and don't have to take all those blasted powerful, toxic pain killers. It's all about positioning. The nurses tried their hardest to position me correctly but it just didn't work. I have to be at a 90 degree angle on my left side. If I start to recline on my back the pain is unbearable as the ball and socket start to rub and my groin tendons start to pull. Taking 10mg of Baclofen only when my legs start twitching (restless legs) and/or the clonis kicks in. Clonis is the uncontrollable vibrating of my legs. When clonis hits me I can not sleep and my legs come off pillows between my legs that prevent pain by spreading my hips wide to help reduce rubbing of the ball and socket. When the clonis becomes too prolonged or intense I have my legs secured to my leg pillows with a soft long pair of cotton socks as a strap. Something that is not allowed in hospitals no matter how much I asked.

Thanks for visiting and sharing my journey.