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Sunday, February 13, 2011

Taking Charge
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!

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