AWP: more bed rest and a dummy spit

my hope for a short bed stay seems to be diminishing. The mark remains. The difficulty is trying to work out the cause so I can try to ensure it doesn’t happen again. Do I have a seating problem? Was there something I lay on in my bed? Was my skin pinched in the hoist sling? Too many possibilities and no clear answers.

Of course I can’t really complain about bed rest. I am certainly used to it by now, and am able to amuse myself on the computer.  The challenge is that I feel more handicapped in bed. In a wheelchair I have some freedom. In bed I am utterly trapped. Obviously, I cannot move but also, because of the angle at which I’m lying, I cannot feed myself (I am not actually very good at that out of bed – I am a very messy eater, but it least I can do it myself). Worst of all is “pooing” in bed. I should note at this point that nurses are amazing. It might be a humiliating experience – the inability to control wee and poo and the like– but nurses treat you in a manner that leaves your dignity intact. Nevertheless, it is still a terribly icky experience to lie in bed with faeces.

now, before you imagine that I’m dealing with these things in a praiseworthy manner I need to let you know that I lost it today. I had been allowed up for one hour and on my way back to bed one of the surgical dressers informed me of a hospital policy that I had sidestepped. I had a mini tantrum and stormed out the room. We made up, but the fact is that, just like everybody else, I ride on the winds of emotion, trying but not always succeeding to stay calm and treat my carers (or family or friends or workmates whatever the case may be) with the respect they deserve.

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Another Week In Paradise: Sheree, Jade and the Spinal Cord Injuries Association

Sheree, Jade and me in my bright white shoes

I spent the day in bed today, although the pressure mark seems to be minor and I hope to be up and about tomorrow. Actually, I must have needed the rest. I slept most of the day until about 330. A lazy day that should leave you Monday workers jealous!. If you would like to experience horror, type “spinal injury and pressure sores” into Google images and look at some of the ulcerations that are possible. Don’t worry mine is nothing like that – it’s a tiny red mark, insignificant provided I take it seriously.

I was allowed up for one hour and I spent that time, firstly getting a coffee and, secondly, in physio – as you can see I have my priorities correct. I had the pleasure of spending my time in the gym chatting to Sheree and her beautiful dog Jade. Sheree had her accident 13 years ago and is a C5 quadriplegic with functionality similar to mine – I have things a little better given that I have some use of the right-hand that she does not. Sheree lives on her own, works full time, and has written a number of books related to spinal-cord injury. She is able to do this with the help of the amazing Jade. This dog helps to open doors, pick up things she is drops, opens the fridge and gets out food, hangs out the washing – and so on and so on.

Sheree works with a Spinal Cord Injuries Association (see link). The organisation’s vision and mission is brilliant:

  • Vision
  • A society without barriers for people with spinal cord injury.
  • Mission
  • Our constant innovation creates independence and unlimited opportunity for people living with spinal cord injury.

but whatever the formalities of her institution, from the perspective of my little world, her visits every Monday are a true blessing. I love the hospital staff – the nurses and physios and doctors and occupational therapists (and I’d better write about them all one-day), but there is nothing like talking to someone who has experienced what you are going through and who has made so much of her life. We are able to talk about all the joys and challenges of being in a chair and she provides endless practical advice. But more than this sharia is a delightful person and I love spending time with her. when she leaves Monday afternoons I am always a happier and more hopeful soul.

Another Week in Paradise day 6 and 7: travel, pressure marks, and bed rest

It’s been a big weekend. After nearly 6 months in hospital I had the opportunity to spend my first weekend at home. I cannot travel in a normal car– my 167 kg Electric wheelchair will not fit– and we cannot yet afford a modified vehicle. Wheelchair taxis are not only expensive but sickening, since the height of the chair sits me above the windows looking down onto the road. So the best way to get around (almost the only way) is public transport, and I have to say that ordinarily it is surprisingly good. most buses have handicapped access, and bus drivers are helpful. Trains are also easy to access. So, while  trackwork the previous week meant that it took me three hours to get home on a day trip, this time a bus to central and a fast train to Ingleburn got me home in good time. In fact, I arrived at my son Jacobs soccer field just in time to watch his team, the Ingleburn Eagles, draw the opening game of the season. Jacob played in the midfield and did well, even if he could barely walk by the end of the game.

After soccer I had the simple pleasures of being at home; eating a meal with a family, watching my dad and brother Troy rip a bathroom to shreds (they are making it usable for me), and watching a movie. Best of all I got to spend the night next my wife. We might have been in different beds (I am in a hospital bed with pressure relieving air mattress), but there is something delightful about simply sharing a space – that unique shared atmosphere that married couples enjoy, or that is experienced by brothers (and sisters) and close friends. An atmosphere that is lost in long stays in hospital

All of this, of course, was too good to be true. When I woke in the morning, my wife inspected my bottom (not for the reasons you might think, since such inspections are  twice daily event) only to discover a pressure mark. Pressure is the bane of spinal cord injury. Most people wriggle around when they sit, and jump up and down and walk around, and roll backwards and forwards when they sleep. All of this movement, most of which is unconscious,  ensures that no one part of the skin experiences pressure buildup. You have probably heard of bedsores, suffered by ageing people who were trapped in their beds unable to move. Spinal patients, likewise, are trapped in bed by night and in their chairs by days. Not only are they unable to feel the pain of pressure, but they cannot  move even if they do. They also have low blood pressure – I mentioned in a previous post that mine averages of BP of 95/60 (sometimes lower) were is the average person should be 120/80 – and the impact of reduced blood flow is to increase the risk of pressure sores. And what starts off a simple red  mark can become an ulceras sore that can keep people in bed for long periods of time. A friend of mine has been lying on her tummy and side for five months because of the pressure sore on her bottom.

And so my wife discovered a little pressure mark. it looked tiny and insignificant but it was enough to keep me in bed Sunday morning. I had to return to the hospital sitting in my chair, but as I now write I am lying in bed. After yet another check of my bum, the nurse tells me that this mark is not too bad. I am hopeful that it will clear quickly (a day or two). We shall  see.

pressure marks on my foot (you did not want to see the one on my bum)

Another Week in Paradise – day 4: stem cell research

Each week in hospital we endure a session entitled “patient education”. I say endure because normally presenters fall into the trap of treating physically handicapped people as though they also are intellectually disabled – aiming the sessions at the lowest common denominator. This week, however, the head of the spinal unit – Dr Bonny Lee – presented a talk on stem cell research and not only did he treat us as withintelligent people, he also touched on a very important issue.

There has been substantial talk recently about the use of stem cells to heal the nerves damaged by spinal-cord injury. Type into Google “stem cell treatment of spinal cord injury” and you will get various references to treatment centres in China and India claiming to be able to heal these injuries by the injection of stem cells. One of my neighbours, Brett (not necessarily a real name), is a tetraplegic who has experienced very little improvement in his condition – it is about three months after his accident and he still has no feeling or movement below the shoulders. Next Thursday he leaves for India where he will say for three months in a treatment clinic for stem cell therapy.

I understand what he is doing with and my wife and I have asked ourselves the question as to whether we too should make the trip. The difficulty, however, with is not only the ethics of the source of stem cells – and we should not forget that the use of embryonic stems cells is not only a concern for Christians but even an issue for pro-choice advocates, since it is universally admitted that abortion is not an ideal choice (even if some think it a “necessary” one), and should not in any way be encouraged by its use in scientific and medical activities.

The immediate concern for the tetraplegic is that these so-called treatments are not yet substantiated by quality, peer reviewed, medical research, and there is simply no evidence that they are effective. People in desperate need will do anything for a miracle cure and, sadly, disreputable organisations will prey on that fact. A similar need draws people to the healing rallies of showman such as Benny Hinn, but it least his promise is less costly and has less negative side-effects (I am not here dismissing the power of God to heal, but merely commenting on the false promise made by some healing evangelists are). Overseas treatment clinics charge many tens of thousands of dollars, but the science of stem cell research, while promising, is presently unable to regenerate the complex nerves that are damaged in spinal injury.

More than false promises, people injecting stem cells into their spine face a very real risk of harm. These risks include the possibility of developing cancers and tumours. And since treatment clinics take patients from overseas and then send them home, they share none of the responsibility for dealing with these long-term complications.

Enough technical jargon, those wanting more information can refer to the ICCP document, experimental treatment for spinal Cord injury. What is fascinating here is the universal longing for a miracle. There are some similarities between Brett’s desire for a miracle and some Christians approach to faith. His problem is that his faith is irrational– it gives everything in pursuit of a dream that is illusory. While the same could be said of many Christians, I understand faith differently. Faith knows that God can heal (and prayer for healing is an appropriate response to such knowledge), but it also trusts God in all the messiness and crises of life. Faith is able to hold together a hope for a better future with acceptance of the reality of life as it is. That, at least, is the sort of faith that I would like to embody (even if I don’t often manage it).

PS – I have moved my diarising to this blog as I simply did not have enough space on Facebook. Obviously this means I am long winded, so sorry if I bore you.

Another Week in Paradise day 3: Groundhog Day

AWP day 3: groundhog day in paradise, more physio and OT. Went to dinner with Sid and Mary, who leave next Wednesday (Ahh). As we were walking Mary said to Sid, “stop walking like a spaz, or I won’t walk with you”. We really do move weirdly. You should see Sid and I play ping-pong or, as we call it, spaz pong. Not politically correct perhaps, but if you can’t laugh at yourself then life is pretty grim.

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another week in Paradise day 2 .2: upper limb group

AWP day 2.2: occupational therapy with the upper limb group – people with problems using their arms and hands. The tall bloke in the pink is Sid, and a nicer fellow you never did meet. He and his wife Mary are sparks of laughter in the context of a grim hospital. He has what is called Central core syndrome. He does have a broken back, but while his legs work well his upper body – his shoulders and arms – have limited function. Broke his back while skiing, so at least he went out with style

Another Week in Paradise day 2.1: morning routine

AWP day 2 .2; morning routine, hoisted talking my computer with a that it yet Jimmy how high they are thank you arm eternal bachelor gearleverfrom bed into commode (usually not as dressed as in this photobut there are some things you do not need to see!). Toileted (again with processes that you probably don’t want to know about), showered, hoisted back into bed and dressed. Hoisted into wheelchair and off to breakfast at the beginning of a day. Long process, about 2 1/2 hours – but I think time can be reduced out-of-hospital.

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Another Week in Paradise day 2; physio

AWP PT.3.2; more physio. I am stretching the legs while my left hand is moving cones. Seems easy perhaps, except my left hand has no movement. My right hand, which does move and provide me a weak grip, is strapped to ensure I do not cheat. I am lifting the cones with what is called a tenodesis grip. Hard to explain, but involves the curling of the fingers that occurs automatically when the wrist moves backward. Try it yourself. Let your fingers go floppy and pull the wrist up and down and see what happens.

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Another Week in Paradise day one: BP

AWP pt.3: physio (about three hours most days). Felt a little dizzy. Blood pressure turned out to be 75/51. normal for me is a bp of 100/65 (for most people 120/80). Laying down in chair normalises things.

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another week in Paradise day one: incontinence

Another week in paradise 2: the temporary solution to my incontinence turns out to be a uridome (see link in previous post). My nurse comes in this morning to place it, and I ask her wether she is good at this. She replies that she has never done it before but can muddle her way through it. Not good for my confidence but all seems fine. Nice at least not to leak.

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