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.
Subscribe to:
Posts (Atom)