A new day has dawned
It's extraordinary
How often it does
Graham was a UK GP before training in Psychiatry in Australia. He has been dedicated for more than 40 years to psychiatric practice in Child and Adolescent Psychiatry. Follow Graham's early development in over 40 posts below. Search for 'Making of a Child Psychiatrist'
Sunday, February 13, 2011
Taking Charge
Thirteen
Six Months
Jan and I went to the cinema, sneaking off from an early work finish at 1.30 on a Friday, and joining about 10 other dedicated souls to see ‘Animal Kingdom’ a very powerful movie about a three generation family gang in Melbourne, one of the Australian centres of Wild West shootouts between gangland and the police. We parked down a side road, paid the ‘Pay and Park’, and walked about 500 metres to the cinema. We decided it did not particularly matter what we saw; it was just important to do it. We found the lift to the first floor, paid for the tickets and went into Cinema Four, finding the nearest seats on the gangway. We held hands all the way – along the footpath, across the pedestrian crossing, in the lift, and all the way through the film.
So what is missing here? Well, for a start, there were no crutches. I still have a Canadian crutch in the car, but really have not used it for about 2 months. My walking is still a bit funny; I am still ataxic with my feet wandering in a slight semi-circle when taking a step. But I feel much more secure; I can walk 500 metres really easily now without getting too fatigued, my right foot does not catch on the big toe (so my slight foot drop seems to have improved), I have relearned to loosen the knees and swing the foot through; I no longer walk as if my legs are wooden with blocks on the end. One surprisingly delightful thing that has happened over the past 3 weeks is that I can now feel individual toes. I have been feeling the changes bit by bit, as my nerves (or at least my perception) first reconnected with my feet, but then my sensation became more precise, almost toe by toe. Amazing! It does vary day by day. So, I seem to be very sensitive to salty food, which means some soups, Chinese food, Thai food, and salt on my fish and chips; the day after, my feet feel like the pads are all lumpy, full up, fat. Then gradually over the next 36 hours that changes back to the now familiar and delightful pins and needles. I guess I don’t worry so much about the negative changes, now; I have much more confidence that I am still making progress, and that within days it will show itself.
One other thing is missing. We got to the cinema and just went in, sitting for about an hour and a half. I did not rush off to the loo to empty my bladder before going in; I just had the confidence that I had been as we left work about 30 minutes before. I have been quite paranoid about all this, not wanting to have an accident, and needing to respond to bladder irritability and apparent fullness. So the first time we went to the theatre we saw a modern version of Hamlet. By the end of the second act I was almost weeping with a need to go, and the anxiety I might wet myself in company. I had thought I might have to leave part way through, walking down a couple of stairs and along the edge of the stage, stomping my (at that stage) two crutches and disturbing the actors. I didn’t, but the anxiety made the whole thing a trial. About a month later we went to see Nigel Kennedy and his band (yes, not the orchestra this time!). I was on a wheelie provided by the theatre, and for the performance transferred to two crutches for the last 15 metres. Again, staff had kindly placed me on the end of a row, and I had to go to the loo moments before sitting down, and then race off as soon as the interval arrived. I managed, did not have an accident, yet from time to time I would check on my status, and make sure I was OK; so it does interfere with enjoyment and that sense of getting totally lost in the performance.
But yesterday was different. I actually gave it no thought before or during. I did not think to check; there was no anxiety. This is such a profound change in a few months and marks the overall changes that have occurred, for which I am truly relieved and grateful. The irritability now only occurs from time to time, and I put this down to a religious pattern of taking Cranberry capsules every morning – said to be good for maintaining bladder cleanliness and asepsis, but also of course terrific for Vitamin C levels. The other thing seems to be an increase in capacity so that I can manage longer, but also drink fluids more often and in greater quantity. To be truthful, over the last few months I have been restricting fluids a bit – first thing in the morning before the 90-minute drive to work, during the day when I am back to back with sessions, and when I know I may not be able quickly to find a loo. I know this is not good practice, especially in our hot climate where you need several litres a day for kidney health, but paranoia about leakage wins out over logic, and a persuasive dietitian wife.
So today, the 3rd of July, marks exactly six calendar months from my sudden paralysis, and I know I am still improving.
I went to see the consultant at the spinal unit a couple of weeks ago, and he watched me walk without crutches; at the follow-up appointment 3 months prior, I had been using one crutch. He took lots of history, and was clearly surprised and pleased by my progress; does not want to see me for a year. For me the real triumph was to drive the car from work to the spinal unit, park in a disabled spot, walk the uneven surfaces, slopes and corridors I had wheeled down five months before, walk up steps, take the lift standing up, and find the consulting room with no help. It was like a reworking, an ‘undoing’, of all the pain and struggle.
An uncle of a friend of my son’s had reportedly had a similar episode to mine about 5 weeks prior and was now a resident in the unit. I had been asked if I would see him and reflect on things. I checked with the consultant to make sure I would not cause more trouble than I usually do. So, after my review, and with permission, I walked down the corridors of the spinal unit. No-one recognised me, no-one challenged me. I simply went up to the nurses’ station and asked for the patient’s room number. No checks, no drill! The nurses may have all changed since my (admittedly brief one month) stay, but I did recognise about three. No-one gave me a second glance; I was just a visitor. I spoke with Colin and his wife for about 30 minutes; I stood leaning against a cupboard, Colin in his wheelie, his wife on the side of the bed. His spinal injury was at a lower level to mine (T11 compared to T7), but he had been fitted with a new wheelchair, and had just begun the familiar physio program I remembered so well. We talked about his story and the sudden onset, how he had arrived at the hospital by ambulance, being totally paralysed from the waist down, bladder and bowel problems – the parallels were creepy. We talked about managing food, sleep and exercises, particularly the latter. I talked about my ideas of challenging your self every day, and pushing to do just that bit more than the physios prescribed each session. I guess for them (and I have subsequently heard the feedback indirectly), it was good to see someone standing, someone who was still struggling but determined to do the best that could be done, almost living a ‘normal life’, whatever that is. I don’t think they realized their gift to me, and its importance. In talking through such a similar process but in someone else, it re-worked my own process and began to distance it somewhat. Writing about it now, I am emotional about the ‘undoing’ process, the unravelling and reworking. I can see just how far I have come, and by comparison, I am really pretty normal.
Most of the time, the average person in the street might not notice my funny walk, or my slight tentativeness, my need for awareness of possible supports if I stumble. I can now go shopping for an hour or so, and not get too fatigued. I have been doing the odd chore at home, including going a couple of steps up a ladder to change batteries in the smoke alarm! I can help change the bed linen. I can get in and out of the spa bath using a rail; the really exciting bit is that I can lift my leg over the side of the bath. I go up and down stairs several times a day, though I still hold the handrail.
I am at work three days a week. We leave home at about 7.30am to get to Brisbane by 9ish. I work an extended half day occasional punctuated by trips to the osteopath, acupuncturist, physio, or some other medical process thing. I have a couple of honours students I see every couple of weeks, some PHD students (some of whom I see weekly, some monthly depending on their stage), and a couple of new research assistants for projects we have just started. I attend consultation liaison meetings and planning meetings. I am actually back seeing patients and their families, some of them follow-ups, and one or two new ones coming out of my work with the Burns Unit. I think the new patients would be aware of little of my history or residual problems; they might assume I have had an accident in the past. When at home, I write, do email, connect on Facebook (and my ‘Random Acts of Kindness’ group and ‘Sensual Haiku’ group); I Twitter, think, plot and plan. I have been more academically active in the last two months than for a very long time, completing reports, writing papers and beginning to complete this book (after all, human gestation takes nine months, so as of today I only have only three months left in which to finalise and birth this baby).
I am not yet back at Karate, which causes me pain. On the one hand, I like having my Tuesday and Friday evenings to do bits of email, think, write, or just watch Rugby on the television. But I miss the camaraderie, I miss the sheer effort and sweatiness of a couple of hours of full-on exercise, and I miss being able to teach. We did go back on three occasions, and gradually extended the time we were able to exercise, but after bowing in, we went to the side and worked alongside the newies and oldies (yeah I know I am an oldie, but I admit it rarely). Once stabilised in a stance, I could certainly do punches, blocks and anything above the waist. I could not lift one of my knees above waist height, and when it was there I could not really kick with any force in any direction. I could do the close stances (Haikudachi and Sanchin but not Nekoashidachi (Cat Stance’), but did not have the balance to do the long stances (Zenkutsudachi, Kibadachi or Shikadachi). So clearly I need much more leg strength and stability before trying again.
We are doing some bits in the mornings at home. One day we choose blocks and punches, another day we do stretches, and another we do stances and kicks. I can see improvement, and I am retaining quite a lot of technique, but I am not yet ready to give up my evenings. I actually told my Sensei (my son), that I probably will not go back. I am too old, my vision is still double at times, and my asthma still needs very careful control to give me the aerobic ability I need.
And then there are some residual problems. I still have pain in my ribs on the right side. Very little at the back now in the site of the original problem whatever it was. Little referred to the side now; just some residual numbness in the front of the right lower ribs, and an area of acid-y superficial burning pain below that on my tummy, stopping at the midline. The area is hypersensitive. You must understand that the pain is very variable. There are some days and even a recent week, when I had very little. Then something starts it off. Sometimes I think it is from sitting down writing in a fixed position, which harks back to my original thoughts about why I got paralysed in the first place. Sometimes tension sets it off – so if I am driving into work and the traffic is crazy to the point of constant vigilance I seem to be worse off than if it is an easy run. Sometimes it seems set off by Karate exercises, as if the working of the muscles round the rib cage is a problem. Sometimes I sneeze or cough, and that suggests perhaps a partially pinched nerve. I don’t know. It is just something to be endured. I have tried using paracetamol to control the pain, but don’t like to take them at all really, and certainly don’t want to get into a habit. When I had my neurology review, the neurologist suggested some painkillers that are good for neurogenic pain, but I refused them. I don’t need to get addicted to some rubbish; I will endure it rather than do that. When my son does acupuncture on the area in a variety of patterns, it certainly has an impact. Last week I was pain free for 36 hours afterward, and it was bliss to have a pain free night. But I can’t keep asking him for help; he is busy earning a living and looking after his wife and children. So, I will endure it. Meditation has been helpful in the past, but who gets time to meditate these days.
Another problem relates to the neurogenic bowel. It is just slow and erratic. I seem to be settled on my regular high fibre high bulking diet, and take 4-5 dried apricots twice a day. I stopped using Coloxyl and Senna regularly after the neurologist suggested there may be long-term problems from continued use. When I need to about once a week I take a dose. Mostly I go three times a week, and it is normal. But if I eat something that upsets me, then I may have trouble for several days. Again, this is a matter of confidence partly. I cannot yet distinguish really between the need for passing wind or the need to pass solids, so any sense of pressure makes me head for the nearest loo. Better to be safe than sorry. I am anxious about a possible accident in public, so I go to the loo more often than I need, and often spend longer in there than I need. Cleaning up is also a problem, because you are never quite sure when things are finished. Seeing as the bowel is slow, it seems to go on a bit. And I am anxious about possible leakage, so I try to stay until I am absolutely sure. One thing that some may find embarrassing is that I use women’s sanitary pads from time to time when I am in public. I just feel more confidence. Funny old life… Anyway, one more reason for not being quite ready to go back to Karate.
Back to the positives. In addition to the little bits of exercise on mornings we can fit it in before leaving for work, I also try to do specific exercises suggested by the physio to work on individual muscle groups. In the past it was leg flexors to get them lifting my feet higher and stronger, then it was everters because I could not do straight leg raising to the side, more recently it is adductors and gluteals to get balance right and improve my ability to balance on one leg and kick. As with everything in this life journey, if the physio says “Why don’t you do 10 each side and then…”, I do 12 or 15 depending on how good I feel. But, I always do more than they ask or suggest.
I have been working on an exercise bike about twice a week; wish I could do it more often, but there is just not the time, there are always so many things to achieve. The physio at the spinal unit started me off on a bike; I can remember the effort of keeping my strapped-on feet moving round and round. She had said I should do about 10 minutes; I kept it up for 15 minutes. After we got home we bought an exercise bike, and I emailed the physio to get a recommendation. She suggested I go on every day, and keep at the easiest level of difficulty and resistance, but gradually build up to about 40 minutes. Well, I have yet to achieve this. I can manage 35 minutes tops, which is marvellous because it allows me to listen to all three movements of a cello concerto (currently listening again and again to the Elgar). But I can do it, and I will eventually build up until I can manage 50 minutes. Then I plan to go to the next level of difficulty for some of that time, and gradually build up the resistance. Then perhaps I could try on my real bike on a real road… Wouldn’t that be something? Can I do it with my current level of proprioceptive loss? Don’t know. If you are riding, and suddenly have to stop and put both feet on the ground, is that possible for a paraplegic? Don’t know. Supposing I fall? Mmm... Supposing I do.
Which takes me to the last bit of this chapter. I have just had a conversation with a psychologist colleague I know, and he asked whether I thought my improvement is more about the physical progress, or more about the mind and how you think. You can’t really say that something is absolutely 100% anything, but ‘mind’ was my instant response. If for some reason I am tired or dispirited, it takes my mind off my need to focus on what I am doing. I might fall against a wall, or trip on a stair or some other potential minor disaster. I then get cross with myself, and a downward spiral begins – physically as well as mentally. Going back to bed may sound a bit drastic, but I have done that. Stopping and meditating can make a phenomenal difference to how you think and feel, which then in turn improves movement. I am sure this story is the right way round. Of course I am pleased by all the little physical changes. But at this point, my proprioception is not changing that much. Close my eyes for a few seconds, and my balance goes off, and then I am in danger of falling, no matter how good my muscle control. Overall I am probably doing very much better than I really have a right to be doing. I am sure this is largely because of my attitude of taking charge of my progress back to health. Equally I know that I must not get cocky. So far I have not had a fall of any significance; I want to keep it that way! So, I need constant vigilance, and I need to plan things toward the larger objectives, but I also need to plan each step (sometimes literally). And for that I need my mind to be the very best it can be - clear, positive, happy, thoughtful, goal-oriented, and in healing mode.
I suppose I should finish the chapter by telling you about the last couple of hours. It’s simple stuff… Jan and I and my 90 year old father, parked the car at Sylvan Beach car park, and walked about a kilometre along the bike path beside the sea to a small café on Pumicestone Passage. It has been a brilliant, sunny day. The first stretch of walking was laboured, and my control over my right hip was not 100%, so there was a little catch in my rather stiff walk. I felt ataxic and would have wandered all over the path if my ever faithful Jan had not held my hand and assisted corrections. My dad was definitely walking more freely than I was despite his recent bronchitis. We sat in the sunshine at the café, and had an ordinary little lunch watching kids and their families, the pelicans and seagulls expecting to find some food after we had left, and the bike-riders riding the path on which we had walked (I want so much to get back on my bike – soon… soon…).
Then we walked back. It was so much easier; the control was back. There was a flow. My knees were much less tightly held, and the follow through gave a flow I have been trying to achieve for a while. I could feel each of my toes being much more relaxed and providing a small platform from which to push off at the end of my stride. I felt a bit like I was flowing. Why? I don’t know. The practice I had gained on the kilometre going - a good warm up? Having lunch in the sun and relaxing, perhaps? The fact that my father paid for lunch? I certainly was happier, more content after lunch. I had certainly given up being so hard on myself. Such a nice afternoon… Without aids… (if you exclude Jan’s hand). Feel a bit like a snooze now. Probably be cactus tomorrow!
Thirteen
Six Months
Jan and I went to the cinema, sneaking off from an early work finish at 1.30 on a Friday, and joining about 10 other dedicated souls to see ‘Animal Kingdom’ a very powerful movie about a three generation family gang in Melbourne, one of the Australian centres of Wild West shootouts between gangland and the police. We parked down a side road, paid the ‘Pay and Park’, and walked about 500 metres to the cinema. We decided it did not particularly matter what we saw; it was just important to do it. We found the lift to the first floor, paid for the tickets and went into Cinema Four, finding the nearest seats on the gangway. We held hands all the way – along the footpath, across the pedestrian crossing, in the lift, and all the way through the film.
So what is missing here? Well, for a start, there were no crutches. I still have a Canadian crutch in the car, but really have not used it for about 2 months. My walking is still a bit funny; I am still ataxic with my feet wandering in a slight semi-circle when taking a step. But I feel much more secure; I can walk 500 metres really easily now without getting too fatigued, my right foot does not catch on the big toe (so my slight foot drop seems to have improved), I have relearned to loosen the knees and swing the foot through; I no longer walk as if my legs are wooden with blocks on the end. One surprisingly delightful thing that has happened over the past 3 weeks is that I can now feel individual toes. I have been feeling the changes bit by bit, as my nerves (or at least my perception) first reconnected with my feet, but then my sensation became more precise, almost toe by toe. Amazing! It does vary day by day. So, I seem to be very sensitive to salty food, which means some soups, Chinese food, Thai food, and salt on my fish and chips; the day after, my feet feel like the pads are all lumpy, full up, fat. Then gradually over the next 36 hours that changes back to the now familiar and delightful pins and needles. I guess I don’t worry so much about the negative changes, now; I have much more confidence that I am still making progress, and that within days it will show itself.
One other thing is missing. We got to the cinema and just went in, sitting for about an hour and a half. I did not rush off to the loo to empty my bladder before going in; I just had the confidence that I had been as we left work about 30 minutes before. I have been quite paranoid about all this, not wanting to have an accident, and needing to respond to bladder irritability and apparent fullness. So the first time we went to the theatre we saw a modern version of Hamlet. By the end of the second act I was almost weeping with a need to go, and the anxiety I might wet myself in company. I had thought I might have to leave part way through, walking down a couple of stairs and along the edge of the stage, stomping my (at that stage) two crutches and disturbing the actors. I didn’t, but the anxiety made the whole thing a trial. About a month later we went to see Nigel Kennedy and his band (yes, not the orchestra this time!). I was on a wheelie provided by the theatre, and for the performance transferred to two crutches for the last 15 metres. Again, staff had kindly placed me on the end of a row, and I had to go to the loo moments before sitting down, and then race off as soon as the interval arrived. I managed, did not have an accident, yet from time to time I would check on my status, and make sure I was OK; so it does interfere with enjoyment and that sense of getting totally lost in the performance.
But yesterday was different. I actually gave it no thought before or during. I did not think to check; there was no anxiety. This is such a profound change in a few months and marks the overall changes that have occurred, for which I am truly relieved and grateful. The irritability now only occurs from time to time, and I put this down to a religious pattern of taking Cranberry capsules every morning – said to be good for maintaining bladder cleanliness and asepsis, but also of course terrific for Vitamin C levels. The other thing seems to be an increase in capacity so that I can manage longer, but also drink fluids more often and in greater quantity. To be truthful, over the last few months I have been restricting fluids a bit – first thing in the morning before the 90-minute drive to work, during the day when I am back to back with sessions, and when I know I may not be able quickly to find a loo. I know this is not good practice, especially in our hot climate where you need several litres a day for kidney health, but paranoia about leakage wins out over logic, and a persuasive dietitian wife.
So today, the 3rd of July, marks exactly six calendar months from my sudden paralysis, and I know I am still improving.
I went to see the consultant at the spinal unit a couple of weeks ago, and he watched me walk without crutches; at the follow-up appointment 3 months prior, I had been using one crutch. He took lots of history, and was clearly surprised and pleased by my progress; does not want to see me for a year. For me the real triumph was to drive the car from work to the spinal unit, park in a disabled spot, walk the uneven surfaces, slopes and corridors I had wheeled down five months before, walk up steps, take the lift standing up, and find the consulting room with no help. It was like a reworking, an ‘undoing’, of all the pain and struggle.
An uncle of a friend of my son’s had reportedly had a similar episode to mine about 5 weeks prior and was now a resident in the unit. I had been asked if I would see him and reflect on things. I checked with the consultant to make sure I would not cause more trouble than I usually do. So, after my review, and with permission, I walked down the corridors of the spinal unit. No-one recognised me, no-one challenged me. I simply went up to the nurses’ station and asked for the patient’s room number. No checks, no drill! The nurses may have all changed since my (admittedly brief one month) stay, but I did recognise about three. No-one gave me a second glance; I was just a visitor. I spoke with Colin and his wife for about 30 minutes; I stood leaning against a cupboard, Colin in his wheelie, his wife on the side of the bed. His spinal injury was at a lower level to mine (T11 compared to T7), but he had been fitted with a new wheelchair, and had just begun the familiar physio program I remembered so well. We talked about his story and the sudden onset, how he had arrived at the hospital by ambulance, being totally paralysed from the waist down, bladder and bowel problems – the parallels were creepy. We talked about managing food, sleep and exercises, particularly the latter. I talked about my ideas of challenging your self every day, and pushing to do just that bit more than the physios prescribed each session. I guess for them (and I have subsequently heard the feedback indirectly), it was good to see someone standing, someone who was still struggling but determined to do the best that could be done, almost living a ‘normal life’, whatever that is. I don’t think they realized their gift to me, and its importance. In talking through such a similar process but in someone else, it re-worked my own process and began to distance it somewhat. Writing about it now, I am emotional about the ‘undoing’ process, the unravelling and reworking. I can see just how far I have come, and by comparison, I am really pretty normal.
Most of the time, the average person in the street might not notice my funny walk, or my slight tentativeness, my need for awareness of possible supports if I stumble. I can now go shopping for an hour or so, and not get too fatigued. I have been doing the odd chore at home, including going a couple of steps up a ladder to change batteries in the smoke alarm! I can help change the bed linen. I can get in and out of the spa bath using a rail; the really exciting bit is that I can lift my leg over the side of the bath. I go up and down stairs several times a day, though I still hold the handrail.
I am at work three days a week. We leave home at about 7.30am to get to Brisbane by 9ish. I work an extended half day occasional punctuated by trips to the osteopath, acupuncturist, physio, or some other medical process thing. I have a couple of honours students I see every couple of weeks, some PHD students (some of whom I see weekly, some monthly depending on their stage), and a couple of new research assistants for projects we have just started. I attend consultation liaison meetings and planning meetings. I am actually back seeing patients and their families, some of them follow-ups, and one or two new ones coming out of my work with the Burns Unit. I think the new patients would be aware of little of my history or residual problems; they might assume I have had an accident in the past. When at home, I write, do email, connect on Facebook (and my ‘Random Acts of Kindness’ group and ‘Sensual Haiku’ group); I Twitter, think, plot and plan. I have been more academically active in the last two months than for a very long time, completing reports, writing papers and beginning to complete this book (after all, human gestation takes nine months, so as of today I only have only three months left in which to finalise and birth this baby).
I am not yet back at Karate, which causes me pain. On the one hand, I like having my Tuesday and Friday evenings to do bits of email, think, write, or just watch Rugby on the television. But I miss the camaraderie, I miss the sheer effort and sweatiness of a couple of hours of full-on exercise, and I miss being able to teach. We did go back on three occasions, and gradually extended the time we were able to exercise, but after bowing in, we went to the side and worked alongside the newies and oldies (yeah I know I am an oldie, but I admit it rarely). Once stabilised in a stance, I could certainly do punches, blocks and anything above the waist. I could not lift one of my knees above waist height, and when it was there I could not really kick with any force in any direction. I could do the close stances (Haikudachi and Sanchin but not Nekoashidachi (Cat Stance’), but did not have the balance to do the long stances (Zenkutsudachi, Kibadachi or Shikadachi). So clearly I need much more leg strength and stability before trying again.
We are doing some bits in the mornings at home. One day we choose blocks and punches, another day we do stretches, and another we do stances and kicks. I can see improvement, and I am retaining quite a lot of technique, but I am not yet ready to give up my evenings. I actually told my Sensei (my son), that I probably will not go back. I am too old, my vision is still double at times, and my asthma still needs very careful control to give me the aerobic ability I need.
And then there are some residual problems. I still have pain in my ribs on the right side. Very little at the back now in the site of the original problem whatever it was. Little referred to the side now; just some residual numbness in the front of the right lower ribs, and an area of acid-y superficial burning pain below that on my tummy, stopping at the midline. The area is hypersensitive. You must understand that the pain is very variable. There are some days and even a recent week, when I had very little. Then something starts it off. Sometimes I think it is from sitting down writing in a fixed position, which harks back to my original thoughts about why I got paralysed in the first place. Sometimes tension sets it off – so if I am driving into work and the traffic is crazy to the point of constant vigilance I seem to be worse off than if it is an easy run. Sometimes it seems set off by Karate exercises, as if the working of the muscles round the rib cage is a problem. Sometimes I sneeze or cough, and that suggests perhaps a partially pinched nerve. I don’t know. It is just something to be endured. I have tried using paracetamol to control the pain, but don’t like to take them at all really, and certainly don’t want to get into a habit. When I had my neurology review, the neurologist suggested some painkillers that are good for neurogenic pain, but I refused them. I don’t need to get addicted to some rubbish; I will endure it rather than do that. When my son does acupuncture on the area in a variety of patterns, it certainly has an impact. Last week I was pain free for 36 hours afterward, and it was bliss to have a pain free night. But I can’t keep asking him for help; he is busy earning a living and looking after his wife and children. So, I will endure it. Meditation has been helpful in the past, but who gets time to meditate these days.
Another problem relates to the neurogenic bowel. It is just slow and erratic. I seem to be settled on my regular high fibre high bulking diet, and take 4-5 dried apricots twice a day. I stopped using Coloxyl and Senna regularly after the neurologist suggested there may be long-term problems from continued use. When I need to about once a week I take a dose. Mostly I go three times a week, and it is normal. But if I eat something that upsets me, then I may have trouble for several days. Again, this is a matter of confidence partly. I cannot yet distinguish really between the need for passing wind or the need to pass solids, so any sense of pressure makes me head for the nearest loo. Better to be safe than sorry. I am anxious about a possible accident in public, so I go to the loo more often than I need, and often spend longer in there than I need. Cleaning up is also a problem, because you are never quite sure when things are finished. Seeing as the bowel is slow, it seems to go on a bit. And I am anxious about possible leakage, so I try to stay until I am absolutely sure. One thing that some may find embarrassing is that I use women’s sanitary pads from time to time when I am in public. I just feel more confidence. Funny old life… Anyway, one more reason for not being quite ready to go back to Karate.
Back to the positives. In addition to the little bits of exercise on mornings we can fit it in before leaving for work, I also try to do specific exercises suggested by the physio to work on individual muscle groups. In the past it was leg flexors to get them lifting my feet higher and stronger, then it was everters because I could not do straight leg raising to the side, more recently it is adductors and gluteals to get balance right and improve my ability to balance on one leg and kick. As with everything in this life journey, if the physio says “Why don’t you do 10 each side and then…”, I do 12 or 15 depending on how good I feel. But, I always do more than they ask or suggest.
I have been working on an exercise bike about twice a week; wish I could do it more often, but there is just not the time, there are always so many things to achieve. The physio at the spinal unit started me off on a bike; I can remember the effort of keeping my strapped-on feet moving round and round. She had said I should do about 10 minutes; I kept it up for 15 minutes. After we got home we bought an exercise bike, and I emailed the physio to get a recommendation. She suggested I go on every day, and keep at the easiest level of difficulty and resistance, but gradually build up to about 40 minutes. Well, I have yet to achieve this. I can manage 35 minutes tops, which is marvellous because it allows me to listen to all three movements of a cello concerto (currently listening again and again to the Elgar). But I can do it, and I will eventually build up until I can manage 50 minutes. Then I plan to go to the next level of difficulty for some of that time, and gradually build up the resistance. Then perhaps I could try on my real bike on a real road… Wouldn’t that be something? Can I do it with my current level of proprioceptive loss? Don’t know. If you are riding, and suddenly have to stop and put both feet on the ground, is that possible for a paraplegic? Don’t know. Supposing I fall? Mmm... Supposing I do.
Which takes me to the last bit of this chapter. I have just had a conversation with a psychologist colleague I know, and he asked whether I thought my improvement is more about the physical progress, or more about the mind and how you think. You can’t really say that something is absolutely 100% anything, but ‘mind’ was my instant response. If for some reason I am tired or dispirited, it takes my mind off my need to focus on what I am doing. I might fall against a wall, or trip on a stair or some other potential minor disaster. I then get cross with myself, and a downward spiral begins – physically as well as mentally. Going back to bed may sound a bit drastic, but I have done that. Stopping and meditating can make a phenomenal difference to how you think and feel, which then in turn improves movement. I am sure this story is the right way round. Of course I am pleased by all the little physical changes. But at this point, my proprioception is not changing that much. Close my eyes for a few seconds, and my balance goes off, and then I am in danger of falling, no matter how good my muscle control. Overall I am probably doing very much better than I really have a right to be doing. I am sure this is largely because of my attitude of taking charge of my progress back to health. Equally I know that I must not get cocky. So far I have not had a fall of any significance; I want to keep it that way! So, I need constant vigilance, and I need to plan things toward the larger objectives, but I also need to plan each step (sometimes literally). And for that I need my mind to be the very best it can be - clear, positive, happy, thoughtful, goal-oriented, and in healing mode.
I suppose I should finish the chapter by telling you about the last couple of hours. It’s simple stuff… Jan and I and my 90 year old father, parked the car at Sylvan Beach car park, and walked about a kilometre along the bike path beside the sea to a small café on Pumicestone Passage. It has been a brilliant, sunny day. The first stretch of walking was laboured, and my control over my right hip was not 100%, so there was a little catch in my rather stiff walk. I felt ataxic and would have wandered all over the path if my ever faithful Jan had not held my hand and assisted corrections. My dad was definitely walking more freely than I was despite his recent bronchitis. We sat in the sunshine at the café, and had an ordinary little lunch watching kids and their families, the pelicans and seagulls expecting to find some food after we had left, and the bike-riders riding the path on which we had walked (I want so much to get back on my bike – soon… soon…).
Then we walked back. It was so much easier; the control was back. There was a flow. My knees were much less tightly held, and the follow through gave a flow I have been trying to achieve for a while. I could feel each of my toes being much more relaxed and providing a small platform from which to push off at the end of my stride. I felt a bit like I was flowing. Why? I don’t know. The practice I had gained on the kilometre going - a good warm up? Having lunch in the sun and relaxing, perhaps? The fact that my father paid for lunch? I certainly was happier, more content after lunch. I had certainly given up being so hard on myself. Such a nice afternoon… Without aids… (if you exclude Jan’s hand). Feel a bit like a snooze now. Probably be cactus tomorrow!
Sunday, February 6, 2011
Taking Charge
Twelve
Sex
OK, this is another topic that you probably don’t talk much about in society, but it becomes a major problem when you have a spinal injury, and for us blokes it becomes an obsession.
You may or may not be able to imagine the relief that occurs when you have your first erection after a spinal injury. It may only be a pale memory of what you could achieve before, something about the size of a large thumb (alright a large thumb on a medium to large man), and you may not have sensed it directly. So you don’t wake up thinking “Ooh wow, that’s an erection”. There is an odd, vague, unfamiliar feeling down there, and you reach down to rearrange your PJs and almost by accident discover this thing that you otherwise can barely feel. You smile (actually several times…), and check it again (actually several times…). Of course it fades, but you still smile at the memory. Then of course you have a problem; actually several problems… Supposing it doesn’t happen again? Do you tell anyone? So, do you get all excited and tell your spouse that all will be well in that department after you leave hospital, and perhaps raise expectations that may not be fulfilled? Do you tell your mates (without of course revealing the size of the thing)? Do you tell your doctors? “I seem to have better control over my waterworks and, just in passing, I seem to have had a small erection”. Are your doctors likely to be interested in such things? Well of course they are, because it is a sign of recovery of the automatic pathways; a sign that spinal shock may be passing. I must admit I waited several weeks before telling anyone… Partly because I wasn’t sure I hadn’t dreamt it, partly because no-one asked directly and also because, well, it’s a private matter, isn’t it?
The first thing to say is that the erection may be of two possible origins. It may just be the outcome of a spinal reflex. That is you were sleeping on your tummy to avoid bedsores, and your pyjama pants got twisted and rubbed in the right (or wrong) place and the friction led to a small tumescence (what a great word). It is good news. It may flag that you will be able to have intercourse in the future, although it does not yet say much about enjoyment, orgasm or ejaculation.
The second origin of the erection is that you may have been having a dream with some fantasies of physical or sexual contact. If this is true, then it is very good news. What it may tell you is that the thoughts were translated into impulses in your brain that were able to get down through the pathways in the spinal cord, and influence the nerves in the much lower level spinal reflex. Think of it as a long spoon reaching down through your spinal cord to stir the sediment at the bottom of the glass. What this may mean is that ultimately you will get more enjoyment from sexual activity, you may be able to orgasm more freely, and you may reach the point of ejaculation more easily. Of course the thinking bit can be a two-edged sword. If your thoughts are distracted, if you are tired or worried, if you are having emotional problems with your partner, then the psychological impact may inhibit any spinal reflex and reduce the likelihood of a sustained and satisfying erection during love-making.
Anyway, I wasn’t sure whether I had been dreaming or what the content may have been. I was really pleased it had occurred, but I reflected that I was extra pleased it had not occurred while I had an indwelling catheter for my bladder; that might have been very uncomfortable. I was also happy it did not happen when nursing staff were changing the catheters; that would have been embarrassing for them and for me. I was also interested that nothing had occurred for about the first five weeks (for four of which I had had a catheter in place, and the next few days had been struggling to get some control over my waterworks after the catheter had been removed).
Anyway, I kept quiet, and waited. About a week later I had a second morning erection almost twice the size of the first. I still could not actually feel it; there was just a fullness to the point of discomfort in my PJs. When I touched it initially there was no touch sensation in the shaft except, strangely, I could feel the warmth from my hand. There was no local excitement, and no apparent need for release. It was just there. It lasted about 10 minutes or so without any further contact or encouragement. I suppose as a male I was delighted and extra relieved (because it was some proof that my body might recover, and I have always enjoyed my sexuality), but as a doctor I was observing in an almost clinical way (I just wanted to see what happened, what the process was). Either way I smiled again (and again). I was pretty sure I had not been dreaming, and certain I had not been fantasising (I was too bloody depressed about my paralysed legs to do much of that). So I reasoned that this was a reflex erection – good sign but not yet the best of signs. I could be optimistic, but not ecstatic, about the future with Jan.
Shortly after this I was transferred to the specialist spinal injuries unit, and of course prior to transfer had several examinations of sensation (light touch, pin prick, temperature, joint position sense, and vibration sense), to help develop a discharge report. No-one asked about erections, so I kept quiet. After arrival at the spinal injuries unit, I had a further (and overall the most thorough) appraisal of both sensation and power. This contributed to an ASIA scaling (something I had not previously come across (or had discussed with me) in the general hospital). The American Spinal Injury Assessment (which can be downloaded as a .pdf file ) examines every muscle group, and every dermatome (an area of skin supplied by a set of nerves from one spinal cord level), and then charts the whole thing on a single piece of paper.
In some ways, the most uncomfortable bit of this was testing sensation around the anus and scrotum - with a piece of cotton wool or a blunt object to get the light touch, or a needle to get the pin prick. Apart from general embarrassment, and also worrying that I might pass wind or something else during the examination, I had been suffering some hypersensitivity to touch, a sort of burning feeling when touched. This translated to an over-reaction to the pin prick – very painful, even when carefully done (which it was). Anyway the examination was completed without windy mishap, and the chart provided a very complete picture of my handicaps. It helped me overall to know specifically what I had to work on to try to improve power, balance and sensation. It also provided a very gratifying contrast when it was repeated four weeks later just before my discharge from the spinal unit; I could actually see on the chart where I had improved, but also see where there was still a lot of work to do.
As part of my belief about taking charge, I asked for copies of my ASIA assessments to take home, and from time to time (especially when I am having a down day, I can look at the charts to see visible proof of my improvements. It has also been helpful to have copies to give to professionals involved in my care in the community since my discharge. You can never quite trust that these communications occur, even with the best of intentions from hospital based professionals. Get as much paperwork as you can, and make copies yourself to take along for interviews and assessments.
Actually I discovered a strange anomaly when I asked for copies. Not only did I get the two assessment charts from the spinal unit, but a third chart appeared – a much earlier one from about 3-4 weeks after admission to the general hospital. No-one had discussed this with me, and I certainly never saw copies while in hospital. Strangely, I cannot remember the supposedly very detailed examination that preceded completion of this early chart. I am, however, utterly certain that no-one tested sensation around my scrotum and anus. I can also say that in retrospect, much of the chart was not quite right, and exaggerated my improvements (I am sure not deliberately) so it then looked like I had deteriorated between the hospital and the spinal unit – which of course was not true. I guess someone had done a lot of guesstimating…
In all of these assessments there was no specific questioning to do with sexuality and, on reflection, this is a bit strange given the importance of the topic, and the need for reassurance. Yet, there is also an ASIA scale for sexuality (and again you can download this if you are interested ). I guess other professionals may be just as embarrassed as I had been. Certainly, my physio who did the follow-up assessment was somewhat embarrassed. She was extremely careful and thorough, but when she got to the nether region bit, she muttered something about it being the job of the doctors.
So it came as a shock one night just before discharge from the spinal unit to have my self-proclaimed special nurse turn up at the bedside and, after a light social chat, dive into ‘questions that had not been asked’. She began with detailed questions about waterworks and bowels before moving on. This helped the initial embarrassment on both sides, I suppose. OK, she is a nurse and therefore professional, but I had never discussed sexuality with anyone from the point of view of being a patient. In particular I had never discussed my sexuality in graphic detail with an attractive young woman at 10 o’clock at night in the semi-gloom, knowing that my three room-mates might well be listening. I did not know whether they had been through this type of conversation, and was not absolutely sure it was standard practice; I just had to accept it was. “Had I experienced an erection in the last few weeks since the spinal damage?” Well yes, on about three occasions. “Could I describe what they were like?” So I did – in graphic detail. “Had I actually reached orgasm?” Well, no, I actually had not tried; to tell you the truth there was not much to work with (brief laughter), and very little skin sensation. “Had I had a nocturnal emission?” (what a wonderful phrase). Well, no I did not appear to have had any leakage, and had certainly not ejaculated (mores the pity!). “Had there been problems prior to the spinal whatever it was?” Well certainly from time to time there had been (shall we say) a certain reluctance to get totally awake. But I had decided this might in part be the result of waning of the male hormone testosterone that occurs naturally with aging.
I have never had a formal test, but had some other signs that this might be true (softening of facial hair, loss of body hair, a certain tiredness). Doctors rarely do things properly, so please don’t do what I did! I would advise anyone who wants to follow my path to do it properly and go and see a specialist. Being me (slightly arrogant to others’ perceptions probably) I read extensively, and checked out the Internet (of course). I discovered that you could access one of the chemicals known to be a building block for testosterone (the testosterone precursor, di-hydro-epi-androsterone or DHEA). It was almost an accident. Doing Karate very actively into my 60s, I have always tried to be aware of just how far to push my body, but equally I have always been anxious to avoid joint problems. I came across several articles, and then a video, extolling the virtue of DHEA for aging athletes – improving energy, and specifically protecting muscles and joints – in part through assisting the creation of testosterone which is active in these areas. I tried it for that reason, but also hoped it might stop me flagging at crucial moments. I would say it has helped. So, I told our nurse some of this, and that I had continued to take DHEA during my admission. She was unfazed.
We went on to discuss various tablets known to assist in developing strong erections. Again, I let her know that I had tried using these on occasion with some side-effects from one of them, but a generally positive result. I had been on the Net, and found information supporting their use in spinal patients. I expressed some anxiety about a rare syndrome occurring in some, where because of the disruption of autonomic nerves, the normal balance between parasympathetic (soothing) and sympathetic (fright, flight or fight) can be disrupted. This can lead to rapid pulse, facial flushing, dizziness and other more serious things, with occasional fatal consequences. She reassured me this was rare, but then rightly went on to check for any possible symptoms I had had. I was reassured that in due course I might trial some chemical assistance if need arose. All of this was a bit speculative, because I was not sure how the next few weeks would pan out. For a start, when I got home I would continue to sleep downstairs until I could physically get upstairs safely to try sleeping in the marital bed.
The very next day a young female registrar came to test those bits of my anatomy not included in the discharge ASIA test. I did warn her that she might be in the firing line for my lack of control over wind. Dismissively, she said it was all part of the job, and undeterred stuck pins in very private places. My hyperaesthesia (overactive nerves) fired off. Ow! Thanks for dobbing me in to the doctors, nursie! But then again, the result went some way to reassure me that down the track my manhood would be recovered.
Further reassurance occurred during my first few days of being home, with a further ‘stirring’ – not in response to anything particular, just one of those early morning happenings. I smiled, and later shared the story thus far with Jan. She smiled. Neither of us got very excited.
At last I made it upstairs, and that is another whole story in itself. Needless to say I had been working hard at the physiotherapy exercises to improve my thigh muscles. And having spent the first week at home also practicing walking with a stick, one afternoon, I clenched the bannisters in a death grip with my left hand and used my forearm to lean for security. Doing as I had been trained, and quietly determined, I lifted my left ‘good’ foot (the ‘good go to heaven’), and using one crutch on my right for support, I dragged the other foot up to meet it. Then the next step – left first and the right to meet it – until I had completed all 17 steps. I was watching a cricket match on TV when Jan arrived upstairs; “What are you doing up here; you were supposed only to do that under supervision” (a broad smile). That night I slept in my own bed.
There is so much relief and also anxiety in getting back to sleeping with your partner after 9 weeks. The bedroom had changed subtly and somehow looked more feminine, and on several mornings Jan stretched languidly across the whole bed; after all it had been all hers. The fact that my legs didn’t move very fast in retreat was an embarrassment to both of us. But it is so nice to get back to privacy, the familiar surrounds and smells of a shared retreat, the joy of watching a woman undress to come to bed. I was in heaven. And the triumph of getting upstairs left me once again teary. At that point I had no other expectations. I did have anxieties. How good was my bowel control? Could I manage to avoid soiling the marital bed? I worked at it, went back to wearing underwear to bed, and pads to assist if I thought there was the slightest risk of an accident. There was never to be one, not even a little leak, and for this I am very grateful, although it took many months before I was convinced enough to leave off the pads and the underwear occasionally (historically I have always slept raw). In contrast though, I did have to put up with the embarrassment of passing wind on several occasions; it just seems to sneak out. Apologies never seem to be enough to assuage the feelings, though Jan has been very accepting, and promises me that I never did smell very much anyway! (I never knew that!) What about urine? Well, I did have a couple of accidents, but they were not in bed; rather they were as I approached the toilet as if I was settled and ready to let go when in fact I was not. Very soon though I was convinced that, despite having to get up at least twice a night to thump off round the end of the bed to the bathroom with my single crutch, I would never leak.
With all the little anxieties it is not surprising that there was no action below, even one the size of a thumb. I was just beginning to despair a bit when one morning it happened. It was early, and I was anxious both to wake Jan, but also not to wake her. She deserved every minute of her sleep considering the pressures she had been under and the anxieties she had coped with. On the other hand… How would we be able to make love? Would ‘it’ be big enough to achieve anything? What would it be like to make love again? What would I feel (given my ASIA scores on lack of (or altered) sensation)? What would Jan feel, and could I make it a good experience for her?
I began to caress her, and she responded. My little happening began to get more enthusiastic. One of the problems with a spinal injury, of course, is that the muscles in legs and behind just disappear over the first weeks in hospital. Although there had been some improvement, all the physiotherapy and other exercise I had had to date just had not yet brought all the muscle back; so manoeuvring was a real giggle, and I needed considerable help to get into the right position. Embarrassingly, I then had to ask whether I was actually ‘in’! The only bit of feeling was around the ‘corona’ of the glans penis, and surprisingly that was almost painful – perhaps akin to the hyperaesthesia I was feeling in legs and feet. The more I moved, the more painful it got. Did I care? Absolutely not; I was ‘home’. There was no sensation in the shaft, or at the base of the penis, so the pain was all I had. I managed to get some movement going, and both Jan and I felt immense relief, even if I did not ejaculate. That would come later with rather a lot of hard work. Was it all worth the effort? You bet.
The second effort some days later was probably related more to wishful thinking than an erection to start the process off. I certainly was able to make Jan feel good, which was an important start. However, when things did not get going well, I thought it might be a good idea to use some Cialis, and tried half a tablet. Two hours later there just was no result; could not raise the dead! Disappointment and anxiety set in. However, several days later the erection was there, and suitably enhanced by Cialis, allowed us to have some fun – and feel sort of normal. I guess I got to learn that the psychological urge just could not get through the nerve damage on its own. You just have to wait for the reflex activity, and then capitalise. Everyone is different of course, but apparently you just can’t force these things.
Since those first efforts, there have been improvements. My musculature is improving from the exercise program. Nerve sensation is improving; the hyperaesthesia in the glans has reduced, I can feel warmth and the beginnings of touch in the shaft and at the base of the penis. So overall my confidence is better, even though reaching orgasm is still a trial.
I suppose the postscript is that we had our follow-up meeting with the Medical Director of the spinal unit yesterday and (shock, horror) late in the interview he actually asked about sexual function, the first doctor to do so. We went into great detail, at the end of which he was able to reassure us that we are on track, and there is likely to continue to be some improvement, even if no-one can tell us how much.
Has my spinal problem affected our marriage? Strange to tell, I think we have an improved relationship. The level of intimacy is better than ever, and we are able to talk about such detail without discomfort. So far we are managing well. Which is good, because at this point I am not sure I could manage without my wife, driver, companion, carer, and …. lover.
Twelve
Sex
OK, this is another topic that you probably don’t talk much about in society, but it becomes a major problem when you have a spinal injury, and for us blokes it becomes an obsession.
You may or may not be able to imagine the relief that occurs when you have your first erection after a spinal injury. It may only be a pale memory of what you could achieve before, something about the size of a large thumb (alright a large thumb on a medium to large man), and you may not have sensed it directly. So you don’t wake up thinking “Ooh wow, that’s an erection”. There is an odd, vague, unfamiliar feeling down there, and you reach down to rearrange your PJs and almost by accident discover this thing that you otherwise can barely feel. You smile (actually several times…), and check it again (actually several times…). Of course it fades, but you still smile at the memory. Then of course you have a problem; actually several problems… Supposing it doesn’t happen again? Do you tell anyone? So, do you get all excited and tell your spouse that all will be well in that department after you leave hospital, and perhaps raise expectations that may not be fulfilled? Do you tell your mates (without of course revealing the size of the thing)? Do you tell your doctors? “I seem to have better control over my waterworks and, just in passing, I seem to have had a small erection”. Are your doctors likely to be interested in such things? Well of course they are, because it is a sign of recovery of the automatic pathways; a sign that spinal shock may be passing. I must admit I waited several weeks before telling anyone… Partly because I wasn’t sure I hadn’t dreamt it, partly because no-one asked directly and also because, well, it’s a private matter, isn’t it?
The first thing to say is that the erection may be of two possible origins. It may just be the outcome of a spinal reflex. That is you were sleeping on your tummy to avoid bedsores, and your pyjama pants got twisted and rubbed in the right (or wrong) place and the friction led to a small tumescence (what a great word). It is good news. It may flag that you will be able to have intercourse in the future, although it does not yet say much about enjoyment, orgasm or ejaculation.
The second origin of the erection is that you may have been having a dream with some fantasies of physical or sexual contact. If this is true, then it is very good news. What it may tell you is that the thoughts were translated into impulses in your brain that were able to get down through the pathways in the spinal cord, and influence the nerves in the much lower level spinal reflex. Think of it as a long spoon reaching down through your spinal cord to stir the sediment at the bottom of the glass. What this may mean is that ultimately you will get more enjoyment from sexual activity, you may be able to orgasm more freely, and you may reach the point of ejaculation more easily. Of course the thinking bit can be a two-edged sword. If your thoughts are distracted, if you are tired or worried, if you are having emotional problems with your partner, then the psychological impact may inhibit any spinal reflex and reduce the likelihood of a sustained and satisfying erection during love-making.
Anyway, I wasn’t sure whether I had been dreaming or what the content may have been. I was really pleased it had occurred, but I reflected that I was extra pleased it had not occurred while I had an indwelling catheter for my bladder; that might have been very uncomfortable. I was also happy it did not happen when nursing staff were changing the catheters; that would have been embarrassing for them and for me. I was also interested that nothing had occurred for about the first five weeks (for four of which I had had a catheter in place, and the next few days had been struggling to get some control over my waterworks after the catheter had been removed).
Anyway, I kept quiet, and waited. About a week later I had a second morning erection almost twice the size of the first. I still could not actually feel it; there was just a fullness to the point of discomfort in my PJs. When I touched it initially there was no touch sensation in the shaft except, strangely, I could feel the warmth from my hand. There was no local excitement, and no apparent need for release. It was just there. It lasted about 10 minutes or so without any further contact or encouragement. I suppose as a male I was delighted and extra relieved (because it was some proof that my body might recover, and I have always enjoyed my sexuality), but as a doctor I was observing in an almost clinical way (I just wanted to see what happened, what the process was). Either way I smiled again (and again). I was pretty sure I had not been dreaming, and certain I had not been fantasising (I was too bloody depressed about my paralysed legs to do much of that). So I reasoned that this was a reflex erection – good sign but not yet the best of signs. I could be optimistic, but not ecstatic, about the future with Jan.
Shortly after this I was transferred to the specialist spinal injuries unit, and of course prior to transfer had several examinations of sensation (light touch, pin prick, temperature, joint position sense, and vibration sense), to help develop a discharge report. No-one asked about erections, so I kept quiet. After arrival at the spinal injuries unit, I had a further (and overall the most thorough) appraisal of both sensation and power. This contributed to an ASIA scaling (something I had not previously come across (or had discussed with me) in the general hospital). The American Spinal Injury Assessment (which can be downloaded as a .pdf file ) examines every muscle group, and every dermatome (an area of skin supplied by a set of nerves from one spinal cord level), and then charts the whole thing on a single piece of paper.
In some ways, the most uncomfortable bit of this was testing sensation around the anus and scrotum - with a piece of cotton wool or a blunt object to get the light touch, or a needle to get the pin prick. Apart from general embarrassment, and also worrying that I might pass wind or something else during the examination, I had been suffering some hypersensitivity to touch, a sort of burning feeling when touched. This translated to an over-reaction to the pin prick – very painful, even when carefully done (which it was). Anyway the examination was completed without windy mishap, and the chart provided a very complete picture of my handicaps. It helped me overall to know specifically what I had to work on to try to improve power, balance and sensation. It also provided a very gratifying contrast when it was repeated four weeks later just before my discharge from the spinal unit; I could actually see on the chart where I had improved, but also see where there was still a lot of work to do.
As part of my belief about taking charge, I asked for copies of my ASIA assessments to take home, and from time to time (especially when I am having a down day, I can look at the charts to see visible proof of my improvements. It has also been helpful to have copies to give to professionals involved in my care in the community since my discharge. You can never quite trust that these communications occur, even with the best of intentions from hospital based professionals. Get as much paperwork as you can, and make copies yourself to take along for interviews and assessments.
Actually I discovered a strange anomaly when I asked for copies. Not only did I get the two assessment charts from the spinal unit, but a third chart appeared – a much earlier one from about 3-4 weeks after admission to the general hospital. No-one had discussed this with me, and I certainly never saw copies while in hospital. Strangely, I cannot remember the supposedly very detailed examination that preceded completion of this early chart. I am, however, utterly certain that no-one tested sensation around my scrotum and anus. I can also say that in retrospect, much of the chart was not quite right, and exaggerated my improvements (I am sure not deliberately) so it then looked like I had deteriorated between the hospital and the spinal unit – which of course was not true. I guess someone had done a lot of guesstimating…
In all of these assessments there was no specific questioning to do with sexuality and, on reflection, this is a bit strange given the importance of the topic, and the need for reassurance. Yet, there is also an ASIA scale for sexuality (and again you can download this if you are interested ). I guess other professionals may be just as embarrassed as I had been. Certainly, my physio who did the follow-up assessment was somewhat embarrassed. She was extremely careful and thorough, but when she got to the nether region bit, she muttered something about it being the job of the doctors.
So it came as a shock one night just before discharge from the spinal unit to have my self-proclaimed special nurse turn up at the bedside and, after a light social chat, dive into ‘questions that had not been asked’. She began with detailed questions about waterworks and bowels before moving on. This helped the initial embarrassment on both sides, I suppose. OK, she is a nurse and therefore professional, but I had never discussed sexuality with anyone from the point of view of being a patient. In particular I had never discussed my sexuality in graphic detail with an attractive young woman at 10 o’clock at night in the semi-gloom, knowing that my three room-mates might well be listening. I did not know whether they had been through this type of conversation, and was not absolutely sure it was standard practice; I just had to accept it was. “Had I experienced an erection in the last few weeks since the spinal damage?” Well yes, on about three occasions. “Could I describe what they were like?” So I did – in graphic detail. “Had I actually reached orgasm?” Well, no, I actually had not tried; to tell you the truth there was not much to work with (brief laughter), and very little skin sensation. “Had I had a nocturnal emission?” (what a wonderful phrase). Well, no I did not appear to have had any leakage, and had certainly not ejaculated (mores the pity!). “Had there been problems prior to the spinal whatever it was?” Well certainly from time to time there had been (shall we say) a certain reluctance to get totally awake. But I had decided this might in part be the result of waning of the male hormone testosterone that occurs naturally with aging.
I have never had a formal test, but had some other signs that this might be true (softening of facial hair, loss of body hair, a certain tiredness). Doctors rarely do things properly, so please don’t do what I did! I would advise anyone who wants to follow my path to do it properly and go and see a specialist. Being me (slightly arrogant to others’ perceptions probably) I read extensively, and checked out the Internet (of course). I discovered that you could access one of the chemicals known to be a building block for testosterone (the testosterone precursor, di-hydro-epi-androsterone or DHEA). It was almost an accident. Doing Karate very actively into my 60s, I have always tried to be aware of just how far to push my body, but equally I have always been anxious to avoid joint problems. I came across several articles, and then a video, extolling the virtue of DHEA for aging athletes – improving energy, and specifically protecting muscles and joints – in part through assisting the creation of testosterone which is active in these areas. I tried it for that reason, but also hoped it might stop me flagging at crucial moments. I would say it has helped. So, I told our nurse some of this, and that I had continued to take DHEA during my admission. She was unfazed.
We went on to discuss various tablets known to assist in developing strong erections. Again, I let her know that I had tried using these on occasion with some side-effects from one of them, but a generally positive result. I had been on the Net, and found information supporting their use in spinal patients. I expressed some anxiety about a rare syndrome occurring in some, where because of the disruption of autonomic nerves, the normal balance between parasympathetic (soothing) and sympathetic (fright, flight or fight) can be disrupted. This can lead to rapid pulse, facial flushing, dizziness and other more serious things, with occasional fatal consequences. She reassured me this was rare, but then rightly went on to check for any possible symptoms I had had. I was reassured that in due course I might trial some chemical assistance if need arose. All of this was a bit speculative, because I was not sure how the next few weeks would pan out. For a start, when I got home I would continue to sleep downstairs until I could physically get upstairs safely to try sleeping in the marital bed.
The very next day a young female registrar came to test those bits of my anatomy not included in the discharge ASIA test. I did warn her that she might be in the firing line for my lack of control over wind. Dismissively, she said it was all part of the job, and undeterred stuck pins in very private places. My hyperaesthesia (overactive nerves) fired off. Ow! Thanks for dobbing me in to the doctors, nursie! But then again, the result went some way to reassure me that down the track my manhood would be recovered.
Further reassurance occurred during my first few days of being home, with a further ‘stirring’ – not in response to anything particular, just one of those early morning happenings. I smiled, and later shared the story thus far with Jan. She smiled. Neither of us got very excited.
At last I made it upstairs, and that is another whole story in itself. Needless to say I had been working hard at the physiotherapy exercises to improve my thigh muscles. And having spent the first week at home also practicing walking with a stick, one afternoon, I clenched the bannisters in a death grip with my left hand and used my forearm to lean for security. Doing as I had been trained, and quietly determined, I lifted my left ‘good’ foot (the ‘good go to heaven’), and using one crutch on my right for support, I dragged the other foot up to meet it. Then the next step – left first and the right to meet it – until I had completed all 17 steps. I was watching a cricket match on TV when Jan arrived upstairs; “What are you doing up here; you were supposed only to do that under supervision” (a broad smile). That night I slept in my own bed.
There is so much relief and also anxiety in getting back to sleeping with your partner after 9 weeks. The bedroom had changed subtly and somehow looked more feminine, and on several mornings Jan stretched languidly across the whole bed; after all it had been all hers. The fact that my legs didn’t move very fast in retreat was an embarrassment to both of us. But it is so nice to get back to privacy, the familiar surrounds and smells of a shared retreat, the joy of watching a woman undress to come to bed. I was in heaven. And the triumph of getting upstairs left me once again teary. At that point I had no other expectations. I did have anxieties. How good was my bowel control? Could I manage to avoid soiling the marital bed? I worked at it, went back to wearing underwear to bed, and pads to assist if I thought there was the slightest risk of an accident. There was never to be one, not even a little leak, and for this I am very grateful, although it took many months before I was convinced enough to leave off the pads and the underwear occasionally (historically I have always slept raw). In contrast though, I did have to put up with the embarrassment of passing wind on several occasions; it just seems to sneak out. Apologies never seem to be enough to assuage the feelings, though Jan has been very accepting, and promises me that I never did smell very much anyway! (I never knew that!) What about urine? Well, I did have a couple of accidents, but they were not in bed; rather they were as I approached the toilet as if I was settled and ready to let go when in fact I was not. Very soon though I was convinced that, despite having to get up at least twice a night to thump off round the end of the bed to the bathroom with my single crutch, I would never leak.
With all the little anxieties it is not surprising that there was no action below, even one the size of a thumb. I was just beginning to despair a bit when one morning it happened. It was early, and I was anxious both to wake Jan, but also not to wake her. She deserved every minute of her sleep considering the pressures she had been under and the anxieties she had coped with. On the other hand… How would we be able to make love? Would ‘it’ be big enough to achieve anything? What would it be like to make love again? What would I feel (given my ASIA scores on lack of (or altered) sensation)? What would Jan feel, and could I make it a good experience for her?
I began to caress her, and she responded. My little happening began to get more enthusiastic. One of the problems with a spinal injury, of course, is that the muscles in legs and behind just disappear over the first weeks in hospital. Although there had been some improvement, all the physiotherapy and other exercise I had had to date just had not yet brought all the muscle back; so manoeuvring was a real giggle, and I needed considerable help to get into the right position. Embarrassingly, I then had to ask whether I was actually ‘in’! The only bit of feeling was around the ‘corona’ of the glans penis, and surprisingly that was almost painful – perhaps akin to the hyperaesthesia I was feeling in legs and feet. The more I moved, the more painful it got. Did I care? Absolutely not; I was ‘home’. There was no sensation in the shaft, or at the base of the penis, so the pain was all I had. I managed to get some movement going, and both Jan and I felt immense relief, even if I did not ejaculate. That would come later with rather a lot of hard work. Was it all worth the effort? You bet.
The second effort some days later was probably related more to wishful thinking than an erection to start the process off. I certainly was able to make Jan feel good, which was an important start. However, when things did not get going well, I thought it might be a good idea to use some Cialis, and tried half a tablet. Two hours later there just was no result; could not raise the dead! Disappointment and anxiety set in. However, several days later the erection was there, and suitably enhanced by Cialis, allowed us to have some fun – and feel sort of normal. I guess I got to learn that the psychological urge just could not get through the nerve damage on its own. You just have to wait for the reflex activity, and then capitalise. Everyone is different of course, but apparently you just can’t force these things.
Since those first efforts, there have been improvements. My musculature is improving from the exercise program. Nerve sensation is improving; the hyperaesthesia in the glans has reduced, I can feel warmth and the beginnings of touch in the shaft and at the base of the penis. So overall my confidence is better, even though reaching orgasm is still a trial.
I suppose the postscript is that we had our follow-up meeting with the Medical Director of the spinal unit yesterday and (shock, horror) late in the interview he actually asked about sexual function, the first doctor to do so. We went into great detail, at the end of which he was able to reassure us that we are on track, and there is likely to continue to be some improvement, even if no-one can tell us how much.
Has my spinal problem affected our marriage? Strange to tell, I think we have an improved relationship. The level of intimacy is better than ever, and we are able to talk about such detail without discomfort. So far we are managing well. Which is good, because at this point I am not sure I could manage without my wife, driver, companion, carer, and …. lover.
Sunday, January 30, 2011
Taking Charge
Eleven
Acupuncture
My interest in acupuncture goes back a long way, but I never suspected it would end up being so important in my own recovery.
The initial interest stemmed from Kirlian photography , . Semyon Kirlian had originally caused some excitement in the late 1930s when he showed that an object on a photographic plate connected to a source of high voltage gives off a small corona of discharges. He caused controversy when, from his experiments with a dying leaf, he suggested that the discharge represented some life force which gradually extinguished with death. This has been debunked, and the effect may simply be the gradual loss of water from the leaf as it dies, rather than anything else. However, to a medical student of everything, the thought that the body put out energy that might be seen or measured was an intriguing one.
Later, there was a science show on the BBC in the UK, maybe in the 70s, led by a very enthusiastic and well-respected interviewer (and I can no longer find a reference to it in the BBC Archives or elsewhere and, embarrassingly, I can no longer remember his name (maybe James Burke)). Essentially, there was early discussion about the Kirlian phenomenon, and then they darkened the theatre, and demonstrated what looked like electron discharge from all sorts of places on the body, finally referencing this to Acupuncture meridians and points on ancient charts. Having been switched off by the arguments about, and ultimately refutation of, the Kirlian phenomenon, I was definitely switched back on.
Some years later, both Jan and I struggled with painful conditions that needed medication and care. She had a period of rather frequent and severe migraines; I had shoulder pain and other muscular pain from overdoing it at Karate (too much youthful enthusiasm, too much force, too little technique!). Recently come onto the market was a self-help electronic, battery driven, acupuncture machine (the Acuhealth) devised at the University of Adelaide. It was hand held, simple to use, and the instruction manual was detailed and clear with sequences of points to be ‘needled’ (that is buzzed) either ‘positively’ or ‘negatively’, for a wide range of common conditions for which all the sequences of points were carefully detailed. There was some introduction to Chinese medicine thinking, but we moved swiftly through this to the practicality of maintaining our own health when necessary. We just followed the instructions to the letter, and it worked - mostly. There were times when the migraines were not helped, but really we were both impressed. The machine still works, 20 years later.
So, we got used to the idea of acupuncture points, meridians, and sequencing of treatment, and I became quite adept at using acupressure on those same points – after all fingers and thumbs are even more portable than a hand-held machine. There was no question that it worked; theory as to why seemed irrelevant.
My early training in Karate did not include much about pressure points, or points to be struck. It was an oversimplified version that taught stances, punches, blocks and kicks through a system of physical practice, repetition, and correction; to be honest, it was mostly about strength and power rather than finesse and deep knowledge. The same with Kata, it was simply about learning the movements from seeing and doing, and then lots of practice, lots of repetition, and lots of correction. Over 9 years getting to my first black belt I became fit and strong, reasonably quick, could defend myself (mostly) in the Kumite (fighting), and actually won some awards in Kata competitions (forms or sequences of dance-like movement –OK it was in the Veterans division). After a while the somewhat meaningless rote of training twice or three times a week can get boring, and even though I was teaching over the last few years, on moving to Queensland I gave up for a while.
I picked it up again when my son returned from the UK to live in Brisbane and started a new style of Karate which was more about the fluidity of movement (Goju Ryu), and less about being some sort of human tank (Shotokan). He has a depth of understanding about the why and how of Karate I found fascinating and, with his encouragement, I began to collect videos of various masters, other styles, and technique. I was constantly introduced to new books explaining what a specific Kata or a sequence of moves was supposed to do to the opponent’s body, and of course much of it relates to Acupuncture points. You can think of Karate as self-defence. There is a basic rule that there is no first strike; in other words, you don’t start it! Within this, and as part of a response to the recognised (and surprisingly limited) variety of habitual acts of human violence, in defending, you can think about attacking muscles and weakening them, damaging superficial arteries or nerves to reduce the control over key muscles and movements, or you can think about joint locks or even breaking bones.
But our style of Karate is in some ways much more subtle than that and targets points on the body that are poorly understood in Western thinking. One issue is that you can cause considerable pain by hitting or pressing on a particular point that coincides with an Acupuncture point in Eastern medical practice. More than that, a defined sequence of strikes can cause temporary paralysis, weakness or even unconsciousness . I have read and re-read many core books (for instance The Bubishi – known as ‘The Bible of Karate’ and translated by Patrick McCarthy ) that describe and explain these, I have attended many specific seminars on how to do this, and I have practiced. So to my half-baked knowledge of medical acupuncture, I have added some depth of knowledge about acupuncture points that are relevant to the art of Karate. This is complex stuff, and I still have a long way to go to reach a full understanding and an ability to use the knowledge appropriately and skilfully.
In Brisbane, Rod began a four-year graduate course in Acupuncture and Eastern Medicine, and I listened with fascination to his synthesis of lectures and concepts. Central to the whole idea is that we have something in us called Chi. This is an energy which flows down certain meridians (mapped thousands of years ago in China), and up other meridians. Chi needs to be in balance between Yin and Yang, and imbalance can lead to ill-health. That is really the limit to my knowledge. I have listened (I promise), but there is so much that just doesn’t seem to fit with the conceptual frame of my 40 odd years of Western Medical practice. I know what I do know, and have experienced, and I just accept the dissonance or conflicts. A senior psychiatric colleague of mine once said many years ago that the essence of a being a good psychiatrist was the ability to tolerate uncertainty. So that is what I do; I accept both, and tolerate the fact that I have difficulty reconciling them. There are many times, though, when I have mused that perhaps eastern ideas might have something very special to offer in psychiatric practice that is just not available in western thinking, and I muse about all the knots that we have got ourselves into with diagnosis and the medical model, so-called scientific method, and pharmaceuticals. Ah well, that is all another story…
I have seen some very odd but convincing demonstrations regarding Chi, which are often seemingly party tricks, but also seem to be so much more. I actually came across it when I first arrived in Brisbane. I was still keen to do martial arts, but looking for something a bit more elegant than what I had been doing, and thought I might try Aikido. This style is very focussed on energy (Chi or Ki), and in my very short career I did get a sense of respect for the ability to move Chi in another person, and disempower them.
The party trick end of this was to rub your hand on your chest in one sideways direction a couple of times, and then point a finger at distance of a centimetre from a $5 note bent slightly and standing on its side. The note moves as if in a very light breeze. Static electricity? I don’t think so. If you rub the other way across your chest you get nothing. Inexplicable…
Another ‘party trick’ is to ‘strip Chi’ from an arm held strongly horizontally from the chest. You demonstrate that you cannot lower that arm very far against resistance by pushing downward somewhere around the wrist. Then you simply very lightly rub your hand somewhat quickly down the top of the arm from shoulder to the back of the hand. After a brief pause you press down on the arm, at the wrist, and find you now ‘have the strength’ to lower it even where previously you did not. Or perhaps your friend has ‘lost the power’ to restrain you from lowering the arm. Simple distraction, or some trick of hypnosis? Apparently not! If you rub upward from the back of the hand to the top of the shoulder, it does not work. Inexplicable…
One final (and much more dramatic example) occurred last time I was in Japan. We had been on a coach journey to train under a waterfall, and were returning home. Along the way we stopped for an evening snack at a roadhouse. The wait for the food seemed interminable, and we all sat around talking Karate (of course). We got onto Chi, and whether it actually existed, and one of the Canadians decided to give us a demonstration. He invited a young woman karateka (of perhaps 50 kilograms) to sit on an ordinary chair, and then invited 4 males to stand at the corners of the chair. One had to put an index finger behind the left knee, another put his index finger behind the right knee. The two others had to put an index finger under each armpit. The young woman was asked to hold herself rigid, and the four males were asked to attempt to lift her! To no avail, not surprisingly. Then all the males were asked to rub their right and left hands together, and focus their Chi through deep breathing at the Hara (an area just below the belly button, called Tanden in Chinese). Our subjects were then invited to hold their hands in sequence 1L, 2L, 3L, 4L, 1R, 2R, 3R, 4R in a line centrally above the woman’s head – not touching her head or each other’s hands. After 30 seconds they removed their hands carefully without touching, again were asked to focus their Chi, and resumed their index fingers where they had been. Once again they lifted – this time to a height of a clear 20 cms above the seat of the chair for about 20 seconds with no effort - before everyone got a bit anxious and lowered her gently back to the chair. I was there, I saw it, and I was gobsmacked. I still cannot explain what happened.
Well, all of this is a long-winded lead up to discussing the place of acupuncture in the treatment of my paralysis.
Rod began work on my body on about Day 3. We had been told a bit about what might be happening to my spinal cord, and had been given the results of all the tests including the early MRIs and CT scans. There was a ‘shadow’ from about the level of T6 down to T9 more on the right. There were arguments about what might have caused it – perhaps a little bleed, perhaps an embolus, perhaps a form of multiple sclerosis. But nobody knew for sure. Without a definitive cause, how could there be a definitive treatment?
And no-one could tell me what the course of recovery might be. I had been started on a moderately large dose of Dexamethasone and some preventative heparin to ensure I did not get deep vein thrombosis but, as noted elsewhere, there was no other treatment offered until I began physiotherapy about 10 days or so later. My muscles were not massaged, nor was my skin soothed where I had pain. I guess medical staff were just waiting to see how much recovery my body could make; sort of passive observation. As I have said elsewhere, nobody could tell me what I might have done to myself (if that was a possible cause), and therefore they could not tell me what not to do in the future!
With permission, but obviously some resistance and concern from staff, Rod came in about 5 evenings a week after a full day at work (poor bloke!). In fact, no medical person wanted to listen to anything I said over the next few weeks with regard to sensation or returned function. They just looked perplexed, or slightly embarrassed.
Behind closed doors (or curtains), and mostly with me laying face down, I got needles inserted locally around where I thought my spine had been damaged around my spinal cord. I don’t know or understand the pattern of insertion, so I cannot explain that. There were also needles placed down my legs in a variety of patterns. Finally there were sometimes needles placed in the crown of my head, or around my upper neck. My very superficial understanding was that the ones in my back were mostly to help local recovery, the ones in my legs to revitalise my legs (literally, given they were so dead), and the ones elsewhere were to help my body regain (or perhaps rebalance) my general health. Occasionally Rod would place needles around my upper chest in the pattern of referred pain from my T7 damage. Did the needles hurt? Mostly not! There were some spots that did appear to be sensitive. One in particular about two-thirds down my inner calf/shin has always given a reaction, made me jump, or at least made my leg jump. Occasionally, needles in the dorsum (top) of my foot would make me jump or at least twitch. Interestingly, the only response I can get from Rod when this happens is “Good, that was a good one…. So where did it travel to (radiate to)?” This is not because he is some sort of sadist getting back at his poor old father. Rather there is a belief, that the stronger the reaction, the more likely the needle is to be exactly in the right place, and the more likely it is to do provide some improvement.
The response to his question was always a positive “Well, down toward the spot between the big and second toe” or “Up to a point on the knee”. What is interesting about these radiations, is that there is no relationship with any piece of my western medical logic. There is no nerve pathway that provides the way that the reaction travels! But if you read about Meridians in the old Chinese or Japanese texts (and I have a bit… before I got overwhelmed by possibilities), they have known about these pathways for thousands of years.
The results were (and remain) fascinating. From the first treatment in hospital, I began to get sensations going down both legs. It felt like warm deep pulses travelling down; like a steamroller driving down inside of my legs. From no sensation to these powerful sensations was just miraculous. Within half an hour, I would be dead to the world in the deepest of sleeps, waking some hours later, slightly uncomfortable from laying in the same position for a long time and with dribble on the pillow. There was a deep sense of comfort or satisfaction, a sort of total body buzz I have only got at other times from meditation. The warm bulldozer waves would have ceased, but what was left were wonderful pins and needles all down through my legs and into my toes. I could not describe the joy and hope those sensations left, when before there had only been deadness.
Within a couple of days, those pins and needles made me determined to try and move what I could so that I did not lose too much muscle, and therefore my strength and control. I began to move my feet a couple of inches up and down, the left and last damaged foot better than the right and first paralysed. Each day I would proudly demonstrate my most recent ‘trick’ to any visitors who had time and patience to watch (most of them, bless them!). Each day there was an improvement with both little and large muscles responding to the efforts. From about the second week, I would wake at 5.30am, and do a whole hour of any exercise I could think of, twisting to the side, gradually drawing up my knees further toward me, holding my knees up while I did work on my abs (such as they are). I swear that if I went two days with no acupuncture, then progress would slow perceptibly, but after one of those deep sleeps, the next day there would be little advances.
The doctors did not seem to be impressed at all. They would go through their daily routine of checking power in all directions for the various muscle groups, reflexes (always, and still, very brisk), all forms of sensation, joint position sense, and response to vibration at each leg joint. I would say that I thought such and such a movement seemed stronger, they would cast doubt with furrowed brow. The senior registrar had one of those impassive faces, not giving away a thing. She was ever doubtful. I guess she did not want me to have too much in the way of expectation, did not want me to be disappointed with the final result. I used to get furious after she left; I was just certain there was progress. After a while, I realised it was her problem (not mine), and that the medical examination is so much of a blunt instrument, that it is (probably genuinely) hard to perceive small changes. I am ultimately grateful to her, surprisingly. Her blank looks and lack of encouragement drove me to do better and better. I would have liked her to be a bit encouraging, particularly in those bleak early days when you believe you will be confined to a wheelchair. Perhaps she understood reverse psychology; but on the other hand, I know she did not.
The consultant was probably worse in some ways. He had a way of smiling a little smile: “What would you know, you are only a patient” was my interpretation, but then I have always been overly sensitive and a touch paranoid. He always looked uncomfortable, and my (?overly sensitive) thoughts were that he really wanted to avoid me, because there was no medicine that was going to work for me, and he could offer nothing to help (perhaps that should be ‘nothing to help a colleague’). After several weeks he did sort of accept my academic status and offer a couple of very good published papers on small series of patients with similar problems. I was grateful, and very interested in what was being said. Mostly he seemed to have some sort of internal dialogue going on, and was always in a hurry. I think the smile was (perhaps) defensive. The other irritant was that his internal dialogue always interrupted what I wanted to say in the way of changes I was noticing, or questions I needed to ask. You could see his eyes glaze over, as he turned to the junior registrar to demand another test. I learned very early on not to complain about physical symptoms, because the result was always another test, another uncomfortable examination.
None of the doctors ever wanted to talk about Acupuncture, and this ultimately included the people later at the specialist Spinal Unit. They did not understand it, had maybe never experienced it, could not find proper rigorous scientific studies on it, just knew there would be never be any Cochrane Collaboration meta-analyses of randomised controlled studies (and actually they are wrong! ). On several occasions, if one of the junior medical or nursing staff came in while I was having one of my treatments, they would bluster and promise to come back later, or the next day. Even the staff and a couple of ex-patients from my mental health service did better than that. Although, there is a funny story here.
One early evening, several staff visited from a group called ‘Beautiful Minds’ – essentially a group of young adults mostly recovered from mental illness and now part of a group helping other young people. None of them had ever been directly my patient. There were two of them with a full-time staff member, and my son arrived to do my acupuncture. They asked if they could watch, having never seen it before, and I agreed (call me odd, call me unethical, and possibly several other names). As each needle went in, they squirmed and said “Ewe…!” One of them is a young woman who has self-injured over the years (very badly and repeatedly), and is now a consumer consultant for several of my professional and research projects on self-injury. Her facial expressions were just the most extreme, and she asked how I could allow my son to do this to me? (She who had repeatedly taken a knife or a razor blade to herself). Towards the end, given my repeated assurances that it was not painful, she asked if she could try? My son put one needle into a point between her thumb and forefinger, much to her (and everyone else’s) amusement. She had to admit that it did not hurt, and then came a string of questions as to whether it would work for chronic self-injury. None of us know (yet).
I feel somewhat strange telling you these things, now. It feels a bit like I am being a traitor to my own training. I am a doctor, I have gained the most wonderful skills and experiences from being a doctor, and I treasure being a doctor. I can’t help that I am western trained and struggle to understand what has happened to me. I know for sure that if I had done nothing in those first few weeks after I was paralysed, I would have mouldered and deteriorated. I know I would have deteriorated emotionally and mentally as much as physically. The acupuncture made significant physical changes. It gave me hope for the future, and this has continued to the present (with the occasional bad day). It has sustained me emotionally. If you like, it has provided a holistic wellness allowing me to challenge the residual paralysis every day of my life.
I still get acupuncture every two weeks or so, sometimes just for the sense of wellness, sometimes targeted at particular aspects like the neurogenic bowel, or the fact that I get swollen legs from time to time. I can go into a session with that old memory of the deadness in my legs, a feeling that the ataxia has increased and I am not as steady, despite the fact that I walk every day, and am on an exercise bike two or three times a week. After a session, within 24 hours, the wonderful pins and needles are back, my feet feel more flexible, more alive. My ataxia settles down, I feel more like agreeing to go for a walk, and (to top it off), my performance on the bike improves dramatically.
I know, it is only one person’s experience… And of course Rod, being the lovely human being he is, just says: “Mmm, it’s probably all coincidence”.
A word to the wise: “If western medicine appears unable to assist you to get rid of irritating problems, give serious consideration to at least trying some acupuncture.”
Eleven
Acupuncture
My interest in acupuncture goes back a long way, but I never suspected it would end up being so important in my own recovery.
The initial interest stemmed from Kirlian photography , . Semyon Kirlian had originally caused some excitement in the late 1930s when he showed that an object on a photographic plate connected to a source of high voltage gives off a small corona of discharges. He caused controversy when, from his experiments with a dying leaf, he suggested that the discharge represented some life force which gradually extinguished with death. This has been debunked, and the effect may simply be the gradual loss of water from the leaf as it dies, rather than anything else. However, to a medical student of everything, the thought that the body put out energy that might be seen or measured was an intriguing one.
Later, there was a science show on the BBC in the UK, maybe in the 70s, led by a very enthusiastic and well-respected interviewer (and I can no longer find a reference to it in the BBC Archives or elsewhere and, embarrassingly, I can no longer remember his name (maybe James Burke)). Essentially, there was early discussion about the Kirlian phenomenon, and then they darkened the theatre, and demonstrated what looked like electron discharge from all sorts of places on the body, finally referencing this to Acupuncture meridians and points on ancient charts. Having been switched off by the arguments about, and ultimately refutation of, the Kirlian phenomenon, I was definitely switched back on.
Some years later, both Jan and I struggled with painful conditions that needed medication and care. She had a period of rather frequent and severe migraines; I had shoulder pain and other muscular pain from overdoing it at Karate (too much youthful enthusiasm, too much force, too little technique!). Recently come onto the market was a self-help electronic, battery driven, acupuncture machine (the Acuhealth) devised at the University of Adelaide. It was hand held, simple to use, and the instruction manual was detailed and clear with sequences of points to be ‘needled’ (that is buzzed) either ‘positively’ or ‘negatively’, for a wide range of common conditions for which all the sequences of points were carefully detailed. There was some introduction to Chinese medicine thinking, but we moved swiftly through this to the practicality of maintaining our own health when necessary. We just followed the instructions to the letter, and it worked - mostly. There were times when the migraines were not helped, but really we were both impressed. The machine still works, 20 years later.
So, we got used to the idea of acupuncture points, meridians, and sequencing of treatment, and I became quite adept at using acupressure on those same points – after all fingers and thumbs are even more portable than a hand-held machine. There was no question that it worked; theory as to why seemed irrelevant.
My early training in Karate did not include much about pressure points, or points to be struck. It was an oversimplified version that taught stances, punches, blocks and kicks through a system of physical practice, repetition, and correction; to be honest, it was mostly about strength and power rather than finesse and deep knowledge. The same with Kata, it was simply about learning the movements from seeing and doing, and then lots of practice, lots of repetition, and lots of correction. Over 9 years getting to my first black belt I became fit and strong, reasonably quick, could defend myself (mostly) in the Kumite (fighting), and actually won some awards in Kata competitions (forms or sequences of dance-like movement –OK it was in the Veterans division). After a while the somewhat meaningless rote of training twice or three times a week can get boring, and even though I was teaching over the last few years, on moving to Queensland I gave up for a while.
I picked it up again when my son returned from the UK to live in Brisbane and started a new style of Karate which was more about the fluidity of movement (Goju Ryu), and less about being some sort of human tank (Shotokan). He has a depth of understanding about the why and how of Karate I found fascinating and, with his encouragement, I began to collect videos of various masters, other styles, and technique. I was constantly introduced to new books explaining what a specific Kata or a sequence of moves was supposed to do to the opponent’s body, and of course much of it relates to Acupuncture points. You can think of Karate as self-defence. There is a basic rule that there is no first strike; in other words, you don’t start it! Within this, and as part of a response to the recognised (and surprisingly limited) variety of habitual acts of human violence, in defending, you can think about attacking muscles and weakening them, damaging superficial arteries or nerves to reduce the control over key muscles and movements, or you can think about joint locks or even breaking bones.
But our style of Karate is in some ways much more subtle than that and targets points on the body that are poorly understood in Western thinking. One issue is that you can cause considerable pain by hitting or pressing on a particular point that coincides with an Acupuncture point in Eastern medical practice. More than that, a defined sequence of strikes can cause temporary paralysis, weakness or even unconsciousness . I have read and re-read many core books (for instance The Bubishi – known as ‘The Bible of Karate’ and translated by Patrick McCarthy ) that describe and explain these, I have attended many specific seminars on how to do this, and I have practiced. So to my half-baked knowledge of medical acupuncture, I have added some depth of knowledge about acupuncture points that are relevant to the art of Karate. This is complex stuff, and I still have a long way to go to reach a full understanding and an ability to use the knowledge appropriately and skilfully.
In Brisbane, Rod began a four-year graduate course in Acupuncture and Eastern Medicine, and I listened with fascination to his synthesis of lectures and concepts. Central to the whole idea is that we have something in us called Chi. This is an energy which flows down certain meridians (mapped thousands of years ago in China), and up other meridians. Chi needs to be in balance between Yin and Yang, and imbalance can lead to ill-health. That is really the limit to my knowledge. I have listened (I promise), but there is so much that just doesn’t seem to fit with the conceptual frame of my 40 odd years of Western Medical practice. I know what I do know, and have experienced, and I just accept the dissonance or conflicts. A senior psychiatric colleague of mine once said many years ago that the essence of a being a good psychiatrist was the ability to tolerate uncertainty. So that is what I do; I accept both, and tolerate the fact that I have difficulty reconciling them. There are many times, though, when I have mused that perhaps eastern ideas might have something very special to offer in psychiatric practice that is just not available in western thinking, and I muse about all the knots that we have got ourselves into with diagnosis and the medical model, so-called scientific method, and pharmaceuticals. Ah well, that is all another story…
I have seen some very odd but convincing demonstrations regarding Chi, which are often seemingly party tricks, but also seem to be so much more. I actually came across it when I first arrived in Brisbane. I was still keen to do martial arts, but looking for something a bit more elegant than what I had been doing, and thought I might try Aikido. This style is very focussed on energy (Chi or Ki), and in my very short career I did get a sense of respect for the ability to move Chi in another person, and disempower them.
The party trick end of this was to rub your hand on your chest in one sideways direction a couple of times, and then point a finger at distance of a centimetre from a $5 note bent slightly and standing on its side. The note moves as if in a very light breeze. Static electricity? I don’t think so. If you rub the other way across your chest you get nothing. Inexplicable…
Another ‘party trick’ is to ‘strip Chi’ from an arm held strongly horizontally from the chest. You demonstrate that you cannot lower that arm very far against resistance by pushing downward somewhere around the wrist. Then you simply very lightly rub your hand somewhat quickly down the top of the arm from shoulder to the back of the hand. After a brief pause you press down on the arm, at the wrist, and find you now ‘have the strength’ to lower it even where previously you did not. Or perhaps your friend has ‘lost the power’ to restrain you from lowering the arm. Simple distraction, or some trick of hypnosis? Apparently not! If you rub upward from the back of the hand to the top of the shoulder, it does not work. Inexplicable…
One final (and much more dramatic example) occurred last time I was in Japan. We had been on a coach journey to train under a waterfall, and were returning home. Along the way we stopped for an evening snack at a roadhouse. The wait for the food seemed interminable, and we all sat around talking Karate (of course). We got onto Chi, and whether it actually existed, and one of the Canadians decided to give us a demonstration. He invited a young woman karateka (of perhaps 50 kilograms) to sit on an ordinary chair, and then invited 4 males to stand at the corners of the chair. One had to put an index finger behind the left knee, another put his index finger behind the right knee. The two others had to put an index finger under each armpit. The young woman was asked to hold herself rigid, and the four males were asked to attempt to lift her! To no avail, not surprisingly. Then all the males were asked to rub their right and left hands together, and focus their Chi through deep breathing at the Hara (an area just below the belly button, called Tanden in Chinese). Our subjects were then invited to hold their hands in sequence 1L, 2L, 3L, 4L, 1R, 2R, 3R, 4R in a line centrally above the woman’s head – not touching her head or each other’s hands. After 30 seconds they removed their hands carefully without touching, again were asked to focus their Chi, and resumed their index fingers where they had been. Once again they lifted – this time to a height of a clear 20 cms above the seat of the chair for about 20 seconds with no effort - before everyone got a bit anxious and lowered her gently back to the chair. I was there, I saw it, and I was gobsmacked. I still cannot explain what happened.
Well, all of this is a long-winded lead up to discussing the place of acupuncture in the treatment of my paralysis.
Rod began work on my body on about Day 3. We had been told a bit about what might be happening to my spinal cord, and had been given the results of all the tests including the early MRIs and CT scans. There was a ‘shadow’ from about the level of T6 down to T9 more on the right. There were arguments about what might have caused it – perhaps a little bleed, perhaps an embolus, perhaps a form of multiple sclerosis. But nobody knew for sure. Without a definitive cause, how could there be a definitive treatment?
And no-one could tell me what the course of recovery might be. I had been started on a moderately large dose of Dexamethasone and some preventative heparin to ensure I did not get deep vein thrombosis but, as noted elsewhere, there was no other treatment offered until I began physiotherapy about 10 days or so later. My muscles were not massaged, nor was my skin soothed where I had pain. I guess medical staff were just waiting to see how much recovery my body could make; sort of passive observation. As I have said elsewhere, nobody could tell me what I might have done to myself (if that was a possible cause), and therefore they could not tell me what not to do in the future!
With permission, but obviously some resistance and concern from staff, Rod came in about 5 evenings a week after a full day at work (poor bloke!). In fact, no medical person wanted to listen to anything I said over the next few weeks with regard to sensation or returned function. They just looked perplexed, or slightly embarrassed.
Behind closed doors (or curtains), and mostly with me laying face down, I got needles inserted locally around where I thought my spine had been damaged around my spinal cord. I don’t know or understand the pattern of insertion, so I cannot explain that. There were also needles placed down my legs in a variety of patterns. Finally there were sometimes needles placed in the crown of my head, or around my upper neck. My very superficial understanding was that the ones in my back were mostly to help local recovery, the ones in my legs to revitalise my legs (literally, given they were so dead), and the ones elsewhere were to help my body regain (or perhaps rebalance) my general health. Occasionally Rod would place needles around my upper chest in the pattern of referred pain from my T7 damage. Did the needles hurt? Mostly not! There were some spots that did appear to be sensitive. One in particular about two-thirds down my inner calf/shin has always given a reaction, made me jump, or at least made my leg jump. Occasionally, needles in the dorsum (top) of my foot would make me jump or at least twitch. Interestingly, the only response I can get from Rod when this happens is “Good, that was a good one…. So where did it travel to (radiate to)?” This is not because he is some sort of sadist getting back at his poor old father. Rather there is a belief, that the stronger the reaction, the more likely the needle is to be exactly in the right place, and the more likely it is to do provide some improvement.
The response to his question was always a positive “Well, down toward the spot between the big and second toe” or “Up to a point on the knee”. What is interesting about these radiations, is that there is no relationship with any piece of my western medical logic. There is no nerve pathway that provides the way that the reaction travels! But if you read about Meridians in the old Chinese or Japanese texts (and I have a bit… before I got overwhelmed by possibilities), they have known about these pathways for thousands of years.
The results were (and remain) fascinating. From the first treatment in hospital, I began to get sensations going down both legs. It felt like warm deep pulses travelling down; like a steamroller driving down inside of my legs. From no sensation to these powerful sensations was just miraculous. Within half an hour, I would be dead to the world in the deepest of sleeps, waking some hours later, slightly uncomfortable from laying in the same position for a long time and with dribble on the pillow. There was a deep sense of comfort or satisfaction, a sort of total body buzz I have only got at other times from meditation. The warm bulldozer waves would have ceased, but what was left were wonderful pins and needles all down through my legs and into my toes. I could not describe the joy and hope those sensations left, when before there had only been deadness.
Within a couple of days, those pins and needles made me determined to try and move what I could so that I did not lose too much muscle, and therefore my strength and control. I began to move my feet a couple of inches up and down, the left and last damaged foot better than the right and first paralysed. Each day I would proudly demonstrate my most recent ‘trick’ to any visitors who had time and patience to watch (most of them, bless them!). Each day there was an improvement with both little and large muscles responding to the efforts. From about the second week, I would wake at 5.30am, and do a whole hour of any exercise I could think of, twisting to the side, gradually drawing up my knees further toward me, holding my knees up while I did work on my abs (such as they are). I swear that if I went two days with no acupuncture, then progress would slow perceptibly, but after one of those deep sleeps, the next day there would be little advances.
The doctors did not seem to be impressed at all. They would go through their daily routine of checking power in all directions for the various muscle groups, reflexes (always, and still, very brisk), all forms of sensation, joint position sense, and response to vibration at each leg joint. I would say that I thought such and such a movement seemed stronger, they would cast doubt with furrowed brow. The senior registrar had one of those impassive faces, not giving away a thing. She was ever doubtful. I guess she did not want me to have too much in the way of expectation, did not want me to be disappointed with the final result. I used to get furious after she left; I was just certain there was progress. After a while, I realised it was her problem (not mine), and that the medical examination is so much of a blunt instrument, that it is (probably genuinely) hard to perceive small changes. I am ultimately grateful to her, surprisingly. Her blank looks and lack of encouragement drove me to do better and better. I would have liked her to be a bit encouraging, particularly in those bleak early days when you believe you will be confined to a wheelchair. Perhaps she understood reverse psychology; but on the other hand, I know she did not.
The consultant was probably worse in some ways. He had a way of smiling a little smile: “What would you know, you are only a patient” was my interpretation, but then I have always been overly sensitive and a touch paranoid. He always looked uncomfortable, and my (?overly sensitive) thoughts were that he really wanted to avoid me, because there was no medicine that was going to work for me, and he could offer nothing to help (perhaps that should be ‘nothing to help a colleague’). After several weeks he did sort of accept my academic status and offer a couple of very good published papers on small series of patients with similar problems. I was grateful, and very interested in what was being said. Mostly he seemed to have some sort of internal dialogue going on, and was always in a hurry. I think the smile was (perhaps) defensive. The other irritant was that his internal dialogue always interrupted what I wanted to say in the way of changes I was noticing, or questions I needed to ask. You could see his eyes glaze over, as he turned to the junior registrar to demand another test. I learned very early on not to complain about physical symptoms, because the result was always another test, another uncomfortable examination.
None of the doctors ever wanted to talk about Acupuncture, and this ultimately included the people later at the specialist Spinal Unit. They did not understand it, had maybe never experienced it, could not find proper rigorous scientific studies on it, just knew there would be never be any Cochrane Collaboration meta-analyses of randomised controlled studies (and actually they are wrong! ). On several occasions, if one of the junior medical or nursing staff came in while I was having one of my treatments, they would bluster and promise to come back later, or the next day. Even the staff and a couple of ex-patients from my mental health service did better than that. Although, there is a funny story here.
One early evening, several staff visited from a group called ‘Beautiful Minds’ – essentially a group of young adults mostly recovered from mental illness and now part of a group helping other young people. None of them had ever been directly my patient. There were two of them with a full-time staff member, and my son arrived to do my acupuncture. They asked if they could watch, having never seen it before, and I agreed (call me odd, call me unethical, and possibly several other names). As each needle went in, they squirmed and said “Ewe…!” One of them is a young woman who has self-injured over the years (very badly and repeatedly), and is now a consumer consultant for several of my professional and research projects on self-injury. Her facial expressions were just the most extreme, and she asked how I could allow my son to do this to me? (She who had repeatedly taken a knife or a razor blade to herself). Towards the end, given my repeated assurances that it was not painful, she asked if she could try? My son put one needle into a point between her thumb and forefinger, much to her (and everyone else’s) amusement. She had to admit that it did not hurt, and then came a string of questions as to whether it would work for chronic self-injury. None of us know (yet).
I feel somewhat strange telling you these things, now. It feels a bit like I am being a traitor to my own training. I am a doctor, I have gained the most wonderful skills and experiences from being a doctor, and I treasure being a doctor. I can’t help that I am western trained and struggle to understand what has happened to me. I know for sure that if I had done nothing in those first few weeks after I was paralysed, I would have mouldered and deteriorated. I know I would have deteriorated emotionally and mentally as much as physically. The acupuncture made significant physical changes. It gave me hope for the future, and this has continued to the present (with the occasional bad day). It has sustained me emotionally. If you like, it has provided a holistic wellness allowing me to challenge the residual paralysis every day of my life.
I still get acupuncture every two weeks or so, sometimes just for the sense of wellness, sometimes targeted at particular aspects like the neurogenic bowel, or the fact that I get swollen legs from time to time. I can go into a session with that old memory of the deadness in my legs, a feeling that the ataxia has increased and I am not as steady, despite the fact that I walk every day, and am on an exercise bike two or three times a week. After a session, within 24 hours, the wonderful pins and needles are back, my feet feel more flexible, more alive. My ataxia settles down, I feel more like agreeing to go for a walk, and (to top it off), my performance on the bike improves dramatically.
I know, it is only one person’s experience… And of course Rod, being the lovely human being he is, just says: “Mmm, it’s probably all coincidence”.
A word to the wise: “If western medicine appears unable to assist you to get rid of irritating problems, give serious consideration to at least trying some acupuncture.”
Sunday, January 23, 2011
Haiku on Effort
Even when you try
Can't always get what you want
Might get what you need
(with apologies to M. Jagger)
Can't always get what you want
Might get what you need
(with apologies to M. Jagger)
Taking Charge
Ten
Physio
Without exception, even in my rather limited experience, physiotherapists are some of my favourite people. They are knowledgeable, have exceptional analytic skills with regard to muscles and how they could be made to work better, and they are practical. When I grow up, I want to train as a physio.
I don’t actually say that in jest (much). I think one of the problems with being a doctor is that we are taught, and practice, the art and science of diagnosis, but then may not have available to us much in the way of interventions. OK, I know that surgeons and emergency physicians and Burns specialists intervene. Perhaps my gripe is more with physicians and also my own colleagues, psychiatrists, psychologists and social workers. I know there are exceptions, but a lot of the psychotherapy practice I hear about (admittedly perhaps more in supervision than elsewhere) is watching the grass grow while the patient works out how to change their lives.
Conversely, I have major problems with most medications; they are sort of ‘quick and dirty’ symptom control, but don’t offer much in terms of changing the original problems that led to the clinical presentation (precipitated it) or are keeping it going (perpetuating it). Pharmaceuticals seem often to be prescribed on rather flimsy grounds, are subject to change after the next psychiatrist changes the diagnosis, and of course medications come with acknowledged side-effects.
I don’t want to get into an argument about this, but I was seriously offended at my follow-up visit when I asked my neurologist what I could to continue my obvious progress, and his response was: “I don’t know, I am not a rehab physician”. Management and treatment are supposed to follow diagnosis. What use are you if you cannot make a definitive diagnosis, and then have no options to provide treatment? While I am getting things off my chest, the other bit that rankled with me was how doctors obviously felt that they were the most important people in the hospital (other than the bed management staff of course). Their erratically timed ward rounds were far more important than physiotherapy appointments. Once I had actually started physio, and wanted to have daily work-outs, Christmas (not a good time to get ill) looked as though it was going to undermine my plans. The opportunities for sessions were a bit limited with only a few days to go, and (of course) various people were (understandably) really looking forward to going on planned leave. So when I did have appointments, was keen, and felt I was making some progress, it felt like a disaster when ward rounds or, in one case, a two hour drip for a somewhat spurious antibiotic treatment, got in the way. Enough whingeing…
The Physio gym was close to the neurology ward on the same floor. So I guess I was very excited (and anxious) when I was wheeled the short distance for my sessions. I never quite knew what to expect. There were often two key parts. The first was for them to gain some idea of my competence. Within the parallel bars, and with a physio sitting directly in front and holding both my knees, I was asked to attempt to stand – with support under the armpits, of course, from another physio. The tears went on and on, streaming down my (somewhat agonised) face (according to the photos). It was not the first time I had been upright (see the chapter on firsts), but it was the first time it was real; no artificial electronic raising up of the dead! So there I was upright with a death grip on the parallel bars, and a physio supporting me from behind, and another sitting and providing a barrier for my knees. I began to sweat (well, mixed with the tears). They asked me to move my weight sideways an inch or so. I could do that! More tears. “No, not like that, don’t allow the hip to drop”. I did what I was told, and after several repetitions got some confidence with that very small movement – and boy was it an effort! “OK, now as you move to the side, just lift the other hip about a couple of centimetres” I did that, and then the other side, again and again – with constant observation and correction. After several repetitions, I was invited to sit back in the wheelie – which I did, with enormous relief and rather poor control.
The second half of the session was practicing the transfer from the chair to a flat plastic covered bed raised to the correct height just a centimetre or so below that of the chair with one armrest removed, using the plastic transfer board as a bridge. Once on the bed in a sitting position with my legs dangling over the edge, I then had to practice lifting my body with my arms and shifting a couple of centimetres to one side. Not a shuffle, you understand, a genuine lift. When you can’t feel things, then there are dangers in sliding and possibly rubbing up a sore (Yeah, well I didn’t want that). Again and again we did this, and then reversed back to the beginning. All part of testing core strength, but also ensuring my safety with transfers (and although I did not know this at the time, this practice and the concepts that went with it were going to be very important when I got my two day Christmas leave). Luckily I had some retained core strength from my Karate training, so my tummy muscles and my arms all worked quite well. But the temptation to slide rather than put in the effort… Mmm.
Then to the next exercise – laying flat on my back and bringing my knees toward me with feet flat on the bed, held in place by the physio. I was asked to sway the knees to the right - slowly and under control (what a joke – I had almost next to no control, and they just wanted to drop to the side). Then back up and down to the other side. The key issue here is ‘control’ of which I had little. Again there were repetitions. What is interesting here is that you would not normally do such a movement in isolation. But if you want to turn over in bed, the ability to have control over this movement is an integral part of turning over. Well enough for one session. Sweaty, exhausted, tearful, but triumphant I was wheeled back to the ward.
Each session had a pattern, with each segment being carefully extended, challenging my ability and persistence. So day by day working on the parallel bars, my feet got lifted higher by centimetres, my hip control was challenged, and eventually I was able to take a step – wobbly, out of control, supported by a physio in front and one behind – but a step! More tears. Then more work on the bed. Could I roll over? Could I lift my body and inch my way across the bed, down the bed? Could I get to sitting on the side of the bed from laying down? Each day I would get exhausted, but back in my room I would practice the movements at every available opportunity. “Don’t forget you need to rest in between” they said, “Your body needs to rest as much as it needs to get going again”.
About a week later they brought a walking machine to my room – a standing frame with arm and elbow rests and wheels; much more simple than the purple dinosaur I described in a previous chapter). One physio off to the side, and one behind, take a step. “Don’t cross the mid line, move each foot toward the outer edge of the frame” “Don’t tread on the other foot” “Don’t take too big a step; stay in control”. Half way up the corridor. More tears because I am actually walking, even if I looked like a baby in a baby walker. Now step by careful step, slow turn round and back to the room. Collapse on the bed; more tears. You get to feel embarrassed by all the tears, which seem to come with a sense of triumph that perhaps you have not lost all function. Why should you be embarrassed? Don’t know, really. Strong men don’t weep, do they? Mmm, what rubbish! It’s the strong men who do what they have to do, and do so through their tears…
Another day, another turn on the walker. I could feel the patterns coming back; not much strength or control, and I could not do this without these patient physio souls watching every move, watching out for every potential slip, checking my enthusiasm to push too hard. An accident, a fall, something broken, would set me back. “Better to be safe than sorry” they would say, repeatedly. I still step on my own toes and now have one chronic black toenail on the big toe of my left foot; ah well, bad luck.
The next day was missed because of a ward round, but the next I am back on the walker, the improvement obvious to all. Take it slow, you have to walk before you can run…Everyone LOL.
The next week was a mess in terms of sessions and formal practice. With Christmas and the two days out of the hospital, I spent a lot of time in the wheelchair. We got to see cousins for Boxing Day, and all that practice on the plastic bed with the transfer board, payed off in terms of transfers from the chair across the board to the passenger car seat and back again at the other end. Back home, and from the car to the chair to the toilet and then back to the chair and the bed is all a major drama, but we made it. I guess it’s all good, and all that effort is a fantastic way to practice skills, even if I am only partially trained and in some danger from overconfidence.
6th January, and I get transferred from my own hospital south of the city to another where there is a specialist Spinal Unit. Brown bags full of gifts, food, spare clothes, all get shovelled into the ambulance for the ride. Whether I like it or not, status and privacy go out the window, as I am moved into a four bed ward with 3 other blokes all of whom have various levels of spinal problems.
First lesson... Mate, they are all worse off than you! Second lesson… They are the most courageous people I have met in a long time. Matt, in his 40s, who has a complete mid-cervical injury from falling off a roof is in the bed opposite, and has been there for five months, waiting for a suitable home to become free for rent. He manoeuvres into a wheelchair with help, but has absolutely no movement in his legs. And he has no control over his bowels at all – God, I thought I had problems… Chris, diagonally across from me is still in his 20s, and came off a motorbike while demonstrating stunts. Again, he has a mid cervical injury, and again has to be helped to transfer to his wheelchair, helped to shower, but then is mobile, active, has loads of friends, a good family and at least one girlfriend and several besotted nurses. John, in the bed next to me, survived rolling his first car, but when he tried it with the second car 6 months later he was left with permanent cervical spine damage, and has been in the Unit for nearly a year. Again, he has loads of visitors, and always seems to be going out somewhere, mostly down the pub. LOL. He is waiting for a specially designed electric wheelchair, and a flat before he can get discharged. His area of the four-bedder is set up like a personal apartment.
A male physio comes and measures the width of my hips. Woo hoo… I am getting my own wheelchair! You know, pleasure and excitement come from such weird things. LOL.
Later, this beautiful black chair arrives with its own specially padded removable seat; the padding is half solid (at the front), and half malleable (towards the back), and moulds to your body. Brilliant. I am shown some of the mechanics, in particular how to use the brake, and how to remove and replace the footrests. There is special instruction on how to be careful with the footrests (and not damage the feet), how to move the chair forward and then a small movement to the side and back, to place the small front wheels pointing forward (so that when I stand, the wheelie does not tip up). Then he leaves instructions scribbled on my own bedside whiteboard. Most important is physio at 1pm next day…
One extra point. The chair comes with a really fetching individually patterned dilly bag tied to the back of the seat, and with my name on it. For the time being I own this chair! The bag is important (I learn) to carry, tissues, spare pants, cream, wallet, the occasional apple and a couple of other items when moving round the unit and the hospital. Clever. It also means I have to swivel myself round to access various bits from the deeper recesses – hey, I am working on my obliques.
Despite the fact I am not supposed yet to do transfers without supervision (that’s on the white board too), I do. I’ve always been naughty like that. Just don’t want to waste other people’s time. OK, I’m impatient. I wheel off to lunch (there is such a lot I could tell you, dear reader), then I go to the bathroom, and using the handrails, being very careful, I stand gingerly from the wheelchair and turn carefully to sit on the toilet (Mmm that’s on the whiteboard for future training and observation, too). Ah well.
I arrive on time at physio. Back to a flat bed; I am watched carefully as I transfer across a board, and then we repeat a set of exercises I had done before. Up and down the side of the bed, lift and move – don’t slide. Then moving across the bed, then with feet tucked up, moving the knees from side to side. All with intense observation, but less assistance than I had had before; that’s OK with me. Do 12 and rest; can I go to sleep now? Everything is such an effort. OK so far. Can you lift your bum off the bed; I oblige with feet locked, knees locked and tummy straining. Do 12 and rest; can I go to sleep now? Over on your tummy; now pull your feet up towards you bending the knees. Do 12 on each side and take a rest. Do 12 more. Have a drink of water (with all this effort its important to keep the fluids up). All these exercises appear so simple working on a set of muscles at a time. It should all be easy, but it is all so hard.
Back to the chair and off to the parallel bars; lock the wheels carefully as taught. Every single action has a purpose and has to be considered carefully. I think that is why you get so tired; you get brain fatigue. LOL. Let’s see how well you stand; good, can you take a step, now another, now back and sit down. My right leg sort of behaves, but I am glad that’s it for the afternoon. Did it really take nearly two hours?
Back at my bed, I do the transfer, and then the physio is back. Every dermatome (an area of skin served by one group of nerves) is tested with cotton wool and a pin, every muscle group tested for strength from top down, every joint tested for position sense. The ASIA chart is completed; it will be repeated before I am discharged. Can I go to sleep now? Sure can. Dinner in bed, hospital style, and then Jan came to visit, and that was Monday.
The next day was about getting through the morning just to get to those two precious hours. The physio gym is, as usual, utterly crowded. There is a person paralysed from the neck down, carefully strapped into a tilting bed, and regaining the sense of being upright - sort of taking some weight on the feet and legs. This is obviously painful, and he frowns and grunts and whimpers, but does it according to expectations. I had seen him at lunch the day before, sitting in an electrically powered chair operated from the chin and mouth as far as I could see. He was being fed by one of the nursing staff, given he had little controlled movement of the arms.
A young woman lies on a flat bed with a physio doing passive exercises on her arms, paying special attention to the joints, stretching them and attempting to maintain their flexibility, gently massaging and opening fingers. The young woman weeps silently, but obviously recognises progress and smiles from time to time at this and the odd joke. She likes the constant ambient music and she and the physio sing snatches of song.
A young Korean couple move from exercise to exercise – is she his sister, or his girlfriend? Either way she is focused, caring, smiling and demanding with high expectations. He has a high level paralysis, has obviously been at the unit for some time and made progress. He is adept at manipulating the chair despite obvious problems. But he does get cross from time to time – an exercise he does not like, or too many repetitions. Despite all the emotion, they are delightfully respectful of one another, and everyone else in the room, bowing frequently and communicating non-verbally given English appears to be somewhat limited. Being young, they both pose from time to time in front of mirrors, caressing hair or straightening their smart, obviously expensive, designer summer clothes.
A centrepiece of the room is a half completed car with no engine, and up on secure blocks. This has clearly been donated to the unit, and is covered in signs and decals. Its purpose is to practice transfers in and out of the driver’s seat or the passenger seat. Assessment and practice go hand in hand, all part of the build up to a future with partial autonomy and a disabled driver permit. When you look more closely, you realise the car has not been in an accident, but as been specially designed to work through all the problems that occur when getting back on the road – the dream of every one of us in the room.
Another section has a wall full of wheelchairs and parts, some of them still boxed, in three tiers of racks. A corner has been allocated to repairs, and every day there are one or more physios taking wheels off, changing settings, replacing bits to ensure good working order, and comfort for the client. Patients often sit there in wheelchairs getting instruction about how to dismantle or reset a chair after a collision or a fall.
On another day my room mate Matt gets special instruction in how to fall, and then get the wheelchair upright again from lying on your back. It looks violent and dangerous, and he looks somewhat anxious at first, but gradually learns the weight transfer manoeuvre that gets you up. All part of an advanced wheelchair training class advertised on the whiteboard of the gym. I watch fascinated, wondering whether I will be able to do what Matt has been doing, if and when the time comes. A part of me rejects the idea; I need to get to the point where I don’t need to learn these exercises, thankyou very much. Will that happen? Can I escape this place of horrors and fascinations?
Today’s exercises are similar to yesterday, but more so. More repetitions, more options, a little more pressure. I feel like I am being pushed, but I don’t know the half of it at this stage. The main lesson occurs after Jan visits for the afternoon, so she watches while I transfer to a 2-seater lounge chair. I am then shown how to use the seat of the chair to lower myself down to the floor, and then with my bum tucked into the edge of the seat, taught how to use my arms to lift back onto the seat. We repeat, again and again. Can I have a sleep now?
The days pass, and each day there are new exercises to be learned. I gain a new physio, and very soon learn that she is not particularly interested in chat, does not stand nonsense. The bed exercises get extended each day with new variants. After about a week I find myself on all fours, lifting one of my knees off the bed and pushing back, repeating, and then changing legs. Over several days as that looks too easy, I am instructed to lift the opposing arm while I push back with the leg, then alternate. When that looks too easy, I have to throw beanbags into a bucket, which demands a lot of my core strength. About two weeks later I am kneeling on the edge of one of the beds, grabbing for a grating above my head, holding on, and then nudging a hanging ball in front of me with first one hand and then the next. Repeat, repeat, then rest and have a drink of water.
At the parallel bars, I am taught the detail of shifting my weight forward on the chair, then using my core strength to lean forward and stand. At first we do this holding on to the bars, but gradually the grip is loosened, until one day I find my self standing with no holding on. Guess what, I weep, again.
All sorts of ways of walking are explored. At first tentative step after tentative step with the old death grip on the bars. Then gradually loosening the grip until the day Jan videotapes me walking like a one-year old a whole length between the bars but never touching. When you are tired, sit down. But don’t take a rest, really. “Here is a soccer ball. Sitting down, put one foot on the ground, one on the ball, and move the ball in a circle.” Change feet, change again, change again. “Rested? OK let’s do that exercise standing on one foot with the other on the ball.” “Now Pete is going to gently kick the ball to you within the parallel bars; see if you can kicked it back in a controlled way. OK, now change feet.”
“Today let’s try walking sideways – holding onto the bars.” Now go the other way. Build it up. Now see if you can kick the soccer ball gently and keep it going. Here are some obstacles – bricks, a ball, a bucket, some beanbags. Work your way round them…
“Today we are going to try a walking frame. We could use one with wheels, but we haven’t got one free at the moment, so we will just use a standard one. I am going to put this soft belt with handles around your waist, just to steady you”. Ok take a step, then the other leg. “Don’t lean on it; that makes you bend over. Keep the distance of the frame smaller so that you can stand upright while you walk.” Careful. Let’s try outside… about 20 metres. Here’s a chair. Take a rest. Good, now let’s return.” Sink into the wheelchair with satisfaction, exhaustion, a smile, and a hint of a tear.
Within days, I am told not to take one step and then move the chair and then take another step with the other foot. Rather, try to walk as you would normally, but using the chair for support and security. The belt is surplus to requirements. The frame is left at my bedside, which allows me to practice, and then show off to visitors. But then being exhausted in the evening or at night going to the toilet, I use the chair. A certain sense of security…
Somewhere in here, I have a fall. We were practicing going from a low armchair to the frame, using the transfer of weight forwards and standing, but without putting weight on the frame. Luckily I was on a soft mat at the time. I don’t remember how it happened exactly. One minute I was getting to stand, the next I was on the floor having fallen on my left shoulder. Just sort of went limp. So, it can happen, Mr. Cocky… We practice getting back on the chair, then go back over the instructions about weight transfer. Practice again and again. Mmm, lots to think about. How did it happen so quickly? How can I avoid getting hurt? Mentally I practice some of my old Aikido training to get me thinking about rolling, so I don’t break something. Of course prevention is better than cure. So let’s take this a bit more slowly, Mr. Cocky… Think about every move, look constantly for obstacles, think it through before you get started.
The following week, I am tried in the gym with Canadian crutches. Tentatively, and with great anxiety I step forward. The next day we go outside, initially with the safety belt, and the physio holding on. Dear lady, somewhat diminutive, I wonder what would happen if I did fall. I imagine she would fall with me; can’t imagine that even with all her training she could stop my 95 kgms from toppling over. And then we are going down slopes, across grass, around the barbecues and back up the slope; the next day twice round the circuit.
During the last two weeks at the Unit, there is instruction on stairs. “Always lift the good leg first. Remember: ‘The good go to heaven!’.” Jan is there to watch and help. Lifting the legs to walk is one thing; lifting them to put on a stair, and then put pressure on to lift my weight is entirely another thing. I sweat bucket loads. Starting with one stair, up then down. Alternate legs. “That looks too easy; let’s try going up two stairs alternating legs”. “OK, remember when you are coming downstairs, you must bend the supporting knee. Don’t do it stiff legged. Make sure you are holding on.” “Good take a rest. Here’s a drink of water. Oh, and a towel…” “OK, now let’s try going up several stairs to this platform. Good. Turn around carefully; now alternate legs coming down”. Eventually, when I am on the crutches, we repeat all these exercises going up and down real stairs, and the length of the walks extends form 20 to 50 to 80 metres and return. I CAN do this…
We did a lot of work on a Swiss ball. Initially this started between the parallel bars, so I could grab them if I began to get unsteady. OK, hold the bars, plant your feet well apart, and lower yourself down. Just sit there, get used to the movement and the control. Easy… “That looks too easy. Bring your feet in a bit. Good. Just sit there for 5 minutes.” “Mmm. That looks too easy. Try putting one foot in front of the other (wobble, wobble). OK, perhaps just 10 cms apart. Try that. Good. Just sit there for 5 minutes.”
A few days later, while sitting on the ball, I was confident enough to let one hand go, and thought I was very clever. Until ““Mmm. That looks too easy. Just widen your feet a bit. Good. Now take both hands off the bars, and see how long you can manage. Just sit there for 5 minutes.” Of course being me I got a bit bored with that. It struck me I could try a Kata from sitting down. Slowly I tried Kata Tensho, initially without the expected breathing pattern, later adding the breathing pattern. What was fascinating, was that sitting still and doing nothing, I had immense problems keeping my balance on the ball. Random or jerky movements lifting my arms made it ten times worse. Doing the Kata, I guess I was focused, and drawing on experience of many years of keeping my core (my Hara) tensioned. I was as steady as a rock. Amazing. Amazing that the movements under the control of years of practice, even though they were strong, seemed to settle me, centre me. And I was rock solid. Until I stopped, and then a few seconds later and I was all wobbly again. So, do the Kata again, and then again. “That looks easy for you. Let’s go and do something else…”
A final fun note. The door to the Physio Dept is a sliding automatic door. Of course this is important for people in wheelchairs, because it is not easy to push forward and sustain that until you are pretty experienced. First problem was that you had to be in just the right spot for the sensor to pick up that you were there. OK, a bit of practice and you get it. Then you have to get a move on with the chair, because the doors closed just that bit quickly, I guess to keep the air conditioning in the Dept. Well that’s not too much of a problem in a chair, because if they close, then mostly it is onto the wheels of the chair, rather than you. So one day late in my month of training, I was going through using a walker… You guessed it, I was just a bit slow. The jaws of the doors closed on my hips stuck out more than they should be toward the rear. I swear it was a test. I could just imagine my physio saying “Mmm, that looks a bit easy going through the door. Let’s see how you manage this…” LOL. Pure paranoia, of course. But it did teach me to stand up a bit straighter, and walk just that bit quicker, and keep my bum in.
When I grow up, I want to train to be a Physio. Just think about it. All that carefully graded process, with reassessment and carefully graded challenge, moved me from a wheelchair to walking, in somewhat just over a month. A miracle.
Ten
Physio
Without exception, even in my rather limited experience, physiotherapists are some of my favourite people. They are knowledgeable, have exceptional analytic skills with regard to muscles and how they could be made to work better, and they are practical. When I grow up, I want to train as a physio.
I don’t actually say that in jest (much). I think one of the problems with being a doctor is that we are taught, and practice, the art and science of diagnosis, but then may not have available to us much in the way of interventions. OK, I know that surgeons and emergency physicians and Burns specialists intervene. Perhaps my gripe is more with physicians and also my own colleagues, psychiatrists, psychologists and social workers. I know there are exceptions, but a lot of the psychotherapy practice I hear about (admittedly perhaps more in supervision than elsewhere) is watching the grass grow while the patient works out how to change their lives.
Conversely, I have major problems with most medications; they are sort of ‘quick and dirty’ symptom control, but don’t offer much in terms of changing the original problems that led to the clinical presentation (precipitated it) or are keeping it going (perpetuating it). Pharmaceuticals seem often to be prescribed on rather flimsy grounds, are subject to change after the next psychiatrist changes the diagnosis, and of course medications come with acknowledged side-effects.
I don’t want to get into an argument about this, but I was seriously offended at my follow-up visit when I asked my neurologist what I could to continue my obvious progress, and his response was: “I don’t know, I am not a rehab physician”. Management and treatment are supposed to follow diagnosis. What use are you if you cannot make a definitive diagnosis, and then have no options to provide treatment? While I am getting things off my chest, the other bit that rankled with me was how doctors obviously felt that they were the most important people in the hospital (other than the bed management staff of course). Their erratically timed ward rounds were far more important than physiotherapy appointments. Once I had actually started physio, and wanted to have daily work-outs, Christmas (not a good time to get ill) looked as though it was going to undermine my plans. The opportunities for sessions were a bit limited with only a few days to go, and (of course) various people were (understandably) really looking forward to going on planned leave. So when I did have appointments, was keen, and felt I was making some progress, it felt like a disaster when ward rounds or, in one case, a two hour drip for a somewhat spurious antibiotic treatment, got in the way. Enough whingeing…
The Physio gym was close to the neurology ward on the same floor. So I guess I was very excited (and anxious) when I was wheeled the short distance for my sessions. I never quite knew what to expect. There were often two key parts. The first was for them to gain some idea of my competence. Within the parallel bars, and with a physio sitting directly in front and holding both my knees, I was asked to attempt to stand – with support under the armpits, of course, from another physio. The tears went on and on, streaming down my (somewhat agonised) face (according to the photos). It was not the first time I had been upright (see the chapter on firsts), but it was the first time it was real; no artificial electronic raising up of the dead! So there I was upright with a death grip on the parallel bars, and a physio supporting me from behind, and another sitting and providing a barrier for my knees. I began to sweat (well, mixed with the tears). They asked me to move my weight sideways an inch or so. I could do that! More tears. “No, not like that, don’t allow the hip to drop”. I did what I was told, and after several repetitions got some confidence with that very small movement – and boy was it an effort! “OK, now as you move to the side, just lift the other hip about a couple of centimetres” I did that, and then the other side, again and again – with constant observation and correction. After several repetitions, I was invited to sit back in the wheelie – which I did, with enormous relief and rather poor control.
The second half of the session was practicing the transfer from the chair to a flat plastic covered bed raised to the correct height just a centimetre or so below that of the chair with one armrest removed, using the plastic transfer board as a bridge. Once on the bed in a sitting position with my legs dangling over the edge, I then had to practice lifting my body with my arms and shifting a couple of centimetres to one side. Not a shuffle, you understand, a genuine lift. When you can’t feel things, then there are dangers in sliding and possibly rubbing up a sore (Yeah, well I didn’t want that). Again and again we did this, and then reversed back to the beginning. All part of testing core strength, but also ensuring my safety with transfers (and although I did not know this at the time, this practice and the concepts that went with it were going to be very important when I got my two day Christmas leave). Luckily I had some retained core strength from my Karate training, so my tummy muscles and my arms all worked quite well. But the temptation to slide rather than put in the effort… Mmm.
Then to the next exercise – laying flat on my back and bringing my knees toward me with feet flat on the bed, held in place by the physio. I was asked to sway the knees to the right - slowly and under control (what a joke – I had almost next to no control, and they just wanted to drop to the side). Then back up and down to the other side. The key issue here is ‘control’ of which I had little. Again there were repetitions. What is interesting here is that you would not normally do such a movement in isolation. But if you want to turn over in bed, the ability to have control over this movement is an integral part of turning over. Well enough for one session. Sweaty, exhausted, tearful, but triumphant I was wheeled back to the ward.
Each session had a pattern, with each segment being carefully extended, challenging my ability and persistence. So day by day working on the parallel bars, my feet got lifted higher by centimetres, my hip control was challenged, and eventually I was able to take a step – wobbly, out of control, supported by a physio in front and one behind – but a step! More tears. Then more work on the bed. Could I roll over? Could I lift my body and inch my way across the bed, down the bed? Could I get to sitting on the side of the bed from laying down? Each day I would get exhausted, but back in my room I would practice the movements at every available opportunity. “Don’t forget you need to rest in between” they said, “Your body needs to rest as much as it needs to get going again”.
About a week later they brought a walking machine to my room – a standing frame with arm and elbow rests and wheels; much more simple than the purple dinosaur I described in a previous chapter). One physio off to the side, and one behind, take a step. “Don’t cross the mid line, move each foot toward the outer edge of the frame” “Don’t tread on the other foot” “Don’t take too big a step; stay in control”. Half way up the corridor. More tears because I am actually walking, even if I looked like a baby in a baby walker. Now step by careful step, slow turn round and back to the room. Collapse on the bed; more tears. You get to feel embarrassed by all the tears, which seem to come with a sense of triumph that perhaps you have not lost all function. Why should you be embarrassed? Don’t know, really. Strong men don’t weep, do they? Mmm, what rubbish! It’s the strong men who do what they have to do, and do so through their tears…
Another day, another turn on the walker. I could feel the patterns coming back; not much strength or control, and I could not do this without these patient physio souls watching every move, watching out for every potential slip, checking my enthusiasm to push too hard. An accident, a fall, something broken, would set me back. “Better to be safe than sorry” they would say, repeatedly. I still step on my own toes and now have one chronic black toenail on the big toe of my left foot; ah well, bad luck.
The next day was missed because of a ward round, but the next I am back on the walker, the improvement obvious to all. Take it slow, you have to walk before you can run…Everyone LOL.
The next week was a mess in terms of sessions and formal practice. With Christmas and the two days out of the hospital, I spent a lot of time in the wheelchair. We got to see cousins for Boxing Day, and all that practice on the plastic bed with the transfer board, payed off in terms of transfers from the chair across the board to the passenger car seat and back again at the other end. Back home, and from the car to the chair to the toilet and then back to the chair and the bed is all a major drama, but we made it. I guess it’s all good, and all that effort is a fantastic way to practice skills, even if I am only partially trained and in some danger from overconfidence.
6th January, and I get transferred from my own hospital south of the city to another where there is a specialist Spinal Unit. Brown bags full of gifts, food, spare clothes, all get shovelled into the ambulance for the ride. Whether I like it or not, status and privacy go out the window, as I am moved into a four bed ward with 3 other blokes all of whom have various levels of spinal problems.
First lesson... Mate, they are all worse off than you! Second lesson… They are the most courageous people I have met in a long time. Matt, in his 40s, who has a complete mid-cervical injury from falling off a roof is in the bed opposite, and has been there for five months, waiting for a suitable home to become free for rent. He manoeuvres into a wheelchair with help, but has absolutely no movement in his legs. And he has no control over his bowels at all – God, I thought I had problems… Chris, diagonally across from me is still in his 20s, and came off a motorbike while demonstrating stunts. Again, he has a mid cervical injury, and again has to be helped to transfer to his wheelchair, helped to shower, but then is mobile, active, has loads of friends, a good family and at least one girlfriend and several besotted nurses. John, in the bed next to me, survived rolling his first car, but when he tried it with the second car 6 months later he was left with permanent cervical spine damage, and has been in the Unit for nearly a year. Again, he has loads of visitors, and always seems to be going out somewhere, mostly down the pub. LOL. He is waiting for a specially designed electric wheelchair, and a flat before he can get discharged. His area of the four-bedder is set up like a personal apartment.
A male physio comes and measures the width of my hips. Woo hoo… I am getting my own wheelchair! You know, pleasure and excitement come from such weird things. LOL.
Later, this beautiful black chair arrives with its own specially padded removable seat; the padding is half solid (at the front), and half malleable (towards the back), and moulds to your body. Brilliant. I am shown some of the mechanics, in particular how to use the brake, and how to remove and replace the footrests. There is special instruction on how to be careful with the footrests (and not damage the feet), how to move the chair forward and then a small movement to the side and back, to place the small front wheels pointing forward (so that when I stand, the wheelie does not tip up). Then he leaves instructions scribbled on my own bedside whiteboard. Most important is physio at 1pm next day…
One extra point. The chair comes with a really fetching individually patterned dilly bag tied to the back of the seat, and with my name on it. For the time being I own this chair! The bag is important (I learn) to carry, tissues, spare pants, cream, wallet, the occasional apple and a couple of other items when moving round the unit and the hospital. Clever. It also means I have to swivel myself round to access various bits from the deeper recesses – hey, I am working on my obliques.
Despite the fact I am not supposed yet to do transfers without supervision (that’s on the white board too), I do. I’ve always been naughty like that. Just don’t want to waste other people’s time. OK, I’m impatient. I wheel off to lunch (there is such a lot I could tell you, dear reader), then I go to the bathroom, and using the handrails, being very careful, I stand gingerly from the wheelchair and turn carefully to sit on the toilet (Mmm that’s on the whiteboard for future training and observation, too). Ah well.
I arrive on time at physio. Back to a flat bed; I am watched carefully as I transfer across a board, and then we repeat a set of exercises I had done before. Up and down the side of the bed, lift and move – don’t slide. Then moving across the bed, then with feet tucked up, moving the knees from side to side. All with intense observation, but less assistance than I had had before; that’s OK with me. Do 12 and rest; can I go to sleep now? Everything is such an effort. OK so far. Can you lift your bum off the bed; I oblige with feet locked, knees locked and tummy straining. Do 12 and rest; can I go to sleep now? Over on your tummy; now pull your feet up towards you bending the knees. Do 12 on each side and take a rest. Do 12 more. Have a drink of water (with all this effort its important to keep the fluids up). All these exercises appear so simple working on a set of muscles at a time. It should all be easy, but it is all so hard.
Back to the chair and off to the parallel bars; lock the wheels carefully as taught. Every single action has a purpose and has to be considered carefully. I think that is why you get so tired; you get brain fatigue. LOL. Let’s see how well you stand; good, can you take a step, now another, now back and sit down. My right leg sort of behaves, but I am glad that’s it for the afternoon. Did it really take nearly two hours?
Back at my bed, I do the transfer, and then the physio is back. Every dermatome (an area of skin served by one group of nerves) is tested with cotton wool and a pin, every muscle group tested for strength from top down, every joint tested for position sense. The ASIA chart is completed; it will be repeated before I am discharged. Can I go to sleep now? Sure can. Dinner in bed, hospital style, and then Jan came to visit, and that was Monday.
The next day was about getting through the morning just to get to those two precious hours. The physio gym is, as usual, utterly crowded. There is a person paralysed from the neck down, carefully strapped into a tilting bed, and regaining the sense of being upright - sort of taking some weight on the feet and legs. This is obviously painful, and he frowns and grunts and whimpers, but does it according to expectations. I had seen him at lunch the day before, sitting in an electrically powered chair operated from the chin and mouth as far as I could see. He was being fed by one of the nursing staff, given he had little controlled movement of the arms.
A young woman lies on a flat bed with a physio doing passive exercises on her arms, paying special attention to the joints, stretching them and attempting to maintain their flexibility, gently massaging and opening fingers. The young woman weeps silently, but obviously recognises progress and smiles from time to time at this and the odd joke. She likes the constant ambient music and she and the physio sing snatches of song.
A young Korean couple move from exercise to exercise – is she his sister, or his girlfriend? Either way she is focused, caring, smiling and demanding with high expectations. He has a high level paralysis, has obviously been at the unit for some time and made progress. He is adept at manipulating the chair despite obvious problems. But he does get cross from time to time – an exercise he does not like, or too many repetitions. Despite all the emotion, they are delightfully respectful of one another, and everyone else in the room, bowing frequently and communicating non-verbally given English appears to be somewhat limited. Being young, they both pose from time to time in front of mirrors, caressing hair or straightening their smart, obviously expensive, designer summer clothes.
A centrepiece of the room is a half completed car with no engine, and up on secure blocks. This has clearly been donated to the unit, and is covered in signs and decals. Its purpose is to practice transfers in and out of the driver’s seat or the passenger seat. Assessment and practice go hand in hand, all part of the build up to a future with partial autonomy and a disabled driver permit. When you look more closely, you realise the car has not been in an accident, but as been specially designed to work through all the problems that occur when getting back on the road – the dream of every one of us in the room.
Another section has a wall full of wheelchairs and parts, some of them still boxed, in three tiers of racks. A corner has been allocated to repairs, and every day there are one or more physios taking wheels off, changing settings, replacing bits to ensure good working order, and comfort for the client. Patients often sit there in wheelchairs getting instruction about how to dismantle or reset a chair after a collision or a fall.
On another day my room mate Matt gets special instruction in how to fall, and then get the wheelchair upright again from lying on your back. It looks violent and dangerous, and he looks somewhat anxious at first, but gradually learns the weight transfer manoeuvre that gets you up. All part of an advanced wheelchair training class advertised on the whiteboard of the gym. I watch fascinated, wondering whether I will be able to do what Matt has been doing, if and when the time comes. A part of me rejects the idea; I need to get to the point where I don’t need to learn these exercises, thankyou very much. Will that happen? Can I escape this place of horrors and fascinations?
Today’s exercises are similar to yesterday, but more so. More repetitions, more options, a little more pressure. I feel like I am being pushed, but I don’t know the half of it at this stage. The main lesson occurs after Jan visits for the afternoon, so she watches while I transfer to a 2-seater lounge chair. I am then shown how to use the seat of the chair to lower myself down to the floor, and then with my bum tucked into the edge of the seat, taught how to use my arms to lift back onto the seat. We repeat, again and again. Can I have a sleep now?
The days pass, and each day there are new exercises to be learned. I gain a new physio, and very soon learn that she is not particularly interested in chat, does not stand nonsense. The bed exercises get extended each day with new variants. After about a week I find myself on all fours, lifting one of my knees off the bed and pushing back, repeating, and then changing legs. Over several days as that looks too easy, I am instructed to lift the opposing arm while I push back with the leg, then alternate. When that looks too easy, I have to throw beanbags into a bucket, which demands a lot of my core strength. About two weeks later I am kneeling on the edge of one of the beds, grabbing for a grating above my head, holding on, and then nudging a hanging ball in front of me with first one hand and then the next. Repeat, repeat, then rest and have a drink of water.
At the parallel bars, I am taught the detail of shifting my weight forward on the chair, then using my core strength to lean forward and stand. At first we do this holding on to the bars, but gradually the grip is loosened, until one day I find my self standing with no holding on. Guess what, I weep, again.
All sorts of ways of walking are explored. At first tentative step after tentative step with the old death grip on the bars. Then gradually loosening the grip until the day Jan videotapes me walking like a one-year old a whole length between the bars but never touching. When you are tired, sit down. But don’t take a rest, really. “Here is a soccer ball. Sitting down, put one foot on the ground, one on the ball, and move the ball in a circle.” Change feet, change again, change again. “Rested? OK let’s do that exercise standing on one foot with the other on the ball.” “Now Pete is going to gently kick the ball to you within the parallel bars; see if you can kicked it back in a controlled way. OK, now change feet.”
“Today let’s try walking sideways – holding onto the bars.” Now go the other way. Build it up. Now see if you can kick the soccer ball gently and keep it going. Here are some obstacles – bricks, a ball, a bucket, some beanbags. Work your way round them…
“Today we are going to try a walking frame. We could use one with wheels, but we haven’t got one free at the moment, so we will just use a standard one. I am going to put this soft belt with handles around your waist, just to steady you”. Ok take a step, then the other leg. “Don’t lean on it; that makes you bend over. Keep the distance of the frame smaller so that you can stand upright while you walk.” Careful. Let’s try outside… about 20 metres. Here’s a chair. Take a rest. Good, now let’s return.” Sink into the wheelchair with satisfaction, exhaustion, a smile, and a hint of a tear.
Within days, I am told not to take one step and then move the chair and then take another step with the other foot. Rather, try to walk as you would normally, but using the chair for support and security. The belt is surplus to requirements. The frame is left at my bedside, which allows me to practice, and then show off to visitors. But then being exhausted in the evening or at night going to the toilet, I use the chair. A certain sense of security…
Somewhere in here, I have a fall. We were practicing going from a low armchair to the frame, using the transfer of weight forwards and standing, but without putting weight on the frame. Luckily I was on a soft mat at the time. I don’t remember how it happened exactly. One minute I was getting to stand, the next I was on the floor having fallen on my left shoulder. Just sort of went limp. So, it can happen, Mr. Cocky… We practice getting back on the chair, then go back over the instructions about weight transfer. Practice again and again. Mmm, lots to think about. How did it happen so quickly? How can I avoid getting hurt? Mentally I practice some of my old Aikido training to get me thinking about rolling, so I don’t break something. Of course prevention is better than cure. So let’s take this a bit more slowly, Mr. Cocky… Think about every move, look constantly for obstacles, think it through before you get started.
The following week, I am tried in the gym with Canadian crutches. Tentatively, and with great anxiety I step forward. The next day we go outside, initially with the safety belt, and the physio holding on. Dear lady, somewhat diminutive, I wonder what would happen if I did fall. I imagine she would fall with me; can’t imagine that even with all her training she could stop my 95 kgms from toppling over. And then we are going down slopes, across grass, around the barbecues and back up the slope; the next day twice round the circuit.
During the last two weeks at the Unit, there is instruction on stairs. “Always lift the good leg first. Remember: ‘The good go to heaven!’.” Jan is there to watch and help. Lifting the legs to walk is one thing; lifting them to put on a stair, and then put pressure on to lift my weight is entirely another thing. I sweat bucket loads. Starting with one stair, up then down. Alternate legs. “That looks too easy; let’s try going up two stairs alternating legs”. “OK, remember when you are coming downstairs, you must bend the supporting knee. Don’t do it stiff legged. Make sure you are holding on.” “Good take a rest. Here’s a drink of water. Oh, and a towel…” “OK, now let’s try going up several stairs to this platform. Good. Turn around carefully; now alternate legs coming down”. Eventually, when I am on the crutches, we repeat all these exercises going up and down real stairs, and the length of the walks extends form 20 to 50 to 80 metres and return. I CAN do this…
We did a lot of work on a Swiss ball. Initially this started between the parallel bars, so I could grab them if I began to get unsteady. OK, hold the bars, plant your feet well apart, and lower yourself down. Just sit there, get used to the movement and the control. Easy… “That looks too easy. Bring your feet in a bit. Good. Just sit there for 5 minutes.” “Mmm. That looks too easy. Try putting one foot in front of the other (wobble, wobble). OK, perhaps just 10 cms apart. Try that. Good. Just sit there for 5 minutes.”
A few days later, while sitting on the ball, I was confident enough to let one hand go, and thought I was very clever. Until ““Mmm. That looks too easy. Just widen your feet a bit. Good. Now take both hands off the bars, and see how long you can manage. Just sit there for 5 minutes.” Of course being me I got a bit bored with that. It struck me I could try a Kata from sitting down. Slowly I tried Kata Tensho, initially without the expected breathing pattern, later adding the breathing pattern. What was fascinating, was that sitting still and doing nothing, I had immense problems keeping my balance on the ball. Random or jerky movements lifting my arms made it ten times worse. Doing the Kata, I guess I was focused, and drawing on experience of many years of keeping my core (my Hara) tensioned. I was as steady as a rock. Amazing. Amazing that the movements under the control of years of practice, even though they were strong, seemed to settle me, centre me. And I was rock solid. Until I stopped, and then a few seconds later and I was all wobbly again. So, do the Kata again, and then again. “That looks easy for you. Let’s go and do something else…”
A final fun note. The door to the Physio Dept is a sliding automatic door. Of course this is important for people in wheelchairs, because it is not easy to push forward and sustain that until you are pretty experienced. First problem was that you had to be in just the right spot for the sensor to pick up that you were there. OK, a bit of practice and you get it. Then you have to get a move on with the chair, because the doors closed just that bit quickly, I guess to keep the air conditioning in the Dept. Well that’s not too much of a problem in a chair, because if they close, then mostly it is onto the wheels of the chair, rather than you. So one day late in my month of training, I was going through using a walker… You guessed it, I was just a bit slow. The jaws of the doors closed on my hips stuck out more than they should be toward the rear. I swear it was a test. I could just imagine my physio saying “Mmm, that looks a bit easy going through the door. Let’s see how you manage this…” LOL. Pure paranoia, of course. But it did teach me to stand up a bit straighter, and walk just that bit quicker, and keep my bum in.
When I grow up, I want to train to be a Physio. Just think about it. All that carefully graded process, with reassessment and carefully graded challenge, moved me from a wheelchair to walking, in somewhat just over a month. A miracle.
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