Transverse Myelitis and Physiotherapy

The following is a chapter from a book about surviving hospitals and Transverse Myelitis. You can purchase the whole book from http://www.familyconcernpublishing.com.au

Follow the prompts to purchase a pdf download (A$10) or we can send you the book by post (A$13+p&p). Or, if you are really patient you could read future blogs, and I would think by the year after next I will have published all chapters.... LOL 

Without exception, even in my rather limited experience, physiotherapists are some of my favourite people. They are knowledgeable, have exceptional analytic skills with regard to muscles and how they could be made to work better, and they are practical. When I grow up, I want to train as a physio.

I don’t actually say that in jest (much). I think one of the problems with being a doctor is that we are taught, and practice, the art and science of diagnosis, but then may not have available to us much in the way of interventions. OK, I know that surgeons and emergency physicians and Burns specialists intervene. Perhaps my gripe is more with physicians and also my own colleagues, psychiatrists, psychologists and social workers. I know there are exceptions, but a lot of the psychotherapy practice I hear about (admittedly perhaps more in supervision than elsewhere) is watching the grass grow while the patient works out how to change their lives.

Conversely, I have major problems with most medications; they are sort of ‘quick and dirty’ symptom control, but don’t offer much in terms of changing the original problems that led to the clinical presentation (precipitated it) or are keeping it going (perpetuating it). Pharmaceuticals seem often to be prescribed on rather flimsy grounds, are subject to change after the next psychiatrist changes the diagnosis, and of course medications come with acknowledged side-effects.

I don’t want to get into an argument about this, but I was seriously offended at my follow-up visit when I asked my neurologist what I could to continue my obvious progress, and his response was: “I don’t know, I am not a rehab physician”. Management and treatment are supposed to follow diagnosis. What use are you if you cannot make a definitive diagnosis, and then have no options to provide treatment? While I am getting things off my chest, the other bit that rankled with me was how doctors obviously felt that they were the most important people in the hospital (other than the bed management staff of course). Their erratically timed ward rounds were far more important than physiotherapy appointments. Once I had actually started physio, and wanted to have daily work-outs, Christmas (not a good time to get ill) looked as though it was going to undermine my plans. The opportunities for sessions were a bit limited with only a few days to go, and (of course) various people were (understandably) really looking forward to going on planned leave. So when I did have appointments, was keen, and felt I was making some progress, it felt like a disaster when ward rounds or, in one case, a two hour drip for a somewhat spurious antibiotic treatment, got in the way. Enough whingeing…

The Physio gym was close to the neurology ward on the same floor. So I guess I was very excited (and anxious) when I was wheeled the short distance for my sessions. I never quite knew what to expect. There were often two key parts. The first was for them to gain some idea of my competence. Within the parallel bars, and with a physio sitting directly in front and holding both my knees, I was asked to attempt to stand – with support under the armpits, of course, from another physio. The tears went on and on, streaming down my (somewhat agonised) face (according to the photos). It was not the first time I had been upright (see the chapter on firsts), but it was the first time it was real; no artificial electronic raising up of the dead! So there I was upright with a death grip on the parallel bars, and a physio supporting me from behind, and another sitting and providing a barrier for my knees. I began to sweat (well, mixed with the tears). They asked me to move my weight sideways an inch or so. I could do that! More tears. “No, not like that, don’t allow the hip to drop”. I did what I was told, and after several repetitions got some confidence with that very small movement – and boy was it an effort! “OK, now as you move to the side, just lift the other hip about a couple of centimetres” I did that, and then the other side, again and again – with constant observation and correction. After several repetitions, I was invited to sit back in the wheelie – which I did, with enormous relief and rather poor control.

The second half of the session was practicing the transfer from the chair to a flat plastic covered bed raised to the correct height just a centimetre or so below that of the chair with one armrest removed, using the plastic transfer board as a bridge. Once on the bed in a sitting position with my legs dangling over the edge, I then had to practice lifting my body with my arms and shifting a couple of centimetres to one side. Not a shuffle, you understand, a genuine lift. When you can’t feel things, then there are dangers in sliding and possibly rubbing up a sore (Yeah, well I didn’t want that). Again and again we did this, and then reversed back to the beginning. All part of testing core strength, but also ensuring my safety with transfers (and although I did not know this at the time, this practice and the concepts that went with it were going to be very important when I got my two day Christmas leave). Luckily I had some retained core strength from my Karate training, so my tummy muscles and my arms all worked quite well. But the temptation to slide rather than put in the effort… Mmm.

Then to the next exercise – laying flat on my back and bringing my knees toward me with feet flat on the bed, held in place by the physio. I was asked to sway the knees to the right  - slowly and under control (what a joke – I had almost next to no control, and they just wanted to drop to the side). Then back up and down to the other side. The key issue here is ‘control’ of which I had little. Again there were repetitions. What is interesting here is that you would not normally do such a movement in isolation. But if you want to turn over in bed, the ability to have control over this movement is an integral part of turning over. Well enough for one session. Sweaty, exhausted, tearful, but triumphant I was wheeled back to the ward.

Each session had a pattern, with each segment being carefully extended, challenging my ability and persistence. So day by day working on the parallel bars, my feet got lifted higher by centimetres, my hip control was challenged, and eventually I was able to take a step – wobbly, out of control, supported by a physio in front and one behind – but a step! More tears. Then more work on the bed. Could I roll over? Could I lift my body and inch my way across the bed, down the bed? Could I get to sitting on the side of the bed from laying down? Each day I would get exhausted, but back in my room I would practice the movements at every available opportunity. “Don’t forget you need to rest in between” they said, “Your body needs to rest as much as it needs to get going again”.

About a week later they brought a walking machine to my room – a standing frame with arm and elbow rests and wheels; much more simple than the purple dinosaur I described in a previous chapter). One physio off to the side, and one behind, take a step. “Don’t cross the mid line, move each foot toward the outer edge of the frame” “Don’t tread on the other foot” “Don’t take too big a step; stay in control”. Half way up the corridor. More tears because I am actually walking, even if I looked like a baby in a baby walker. Now step by careful step, slow turn round and back to the room. Collapse on the bed; more tears. You get to feel embarrassed by all the tears, which seem to come with a sense of triumph that perhaps you have not lost all function. Why should you be embarrassed? Don’t know, really. Strong men don’t weep, do they? Mmm, what rubbish! It’s the strong men who do what they have to do, and do so through their tears…

Another day, another turn on the walker. I could feel the patterns coming back; not much strength or control, and I could not do this without these patient physio souls watching every move, watching out for every potential slip, checking my enthusiasm to push too hard. An accident, a fall, something broken, would set me back. “Better to be safe than sorry” they would say, repeatedly. I still step on my own toes and now have one chronic black toenail on the big toe of my left foot; ah well, bad luck.

The next day was missed because of a ward round, but the next I am back on the walker, the improvement obvious to all. Take it slow, you have to walk before you can run…Everyone LOL.

The physios began to plan, and got quite excited about the possibility of using the hydrotherapy pool. Given I like swimming, I got excited too, and asked Jan to bring in some bathers. But then a day later, my hopes were dashed. To use the pool you have to be continent; that is you must have control over both waterworks and bowel, otherwise you may be putting things into the pool that could put others health at risk. Damn, it had sounded so good! I was reminded of when we first arrived in Australia. A friend had a pool, and a ‘wet bar’ to go with it; I was very impressed. He had a sign which said: “We don’t swim in your toilet; please don’t pee in our pool” - one of those pithy sayings that has so endeared me to the Australian manner and way of life. Anyway, if I could not stop myself from peeing in the hydrotherapy pool, then I was not allowed near it. It was going to be many weeks before the whole thing was to be reconsidered.

The next week was a mess in terms of sessions and formal practice. With Christmas and the two days out of the hospital, I spent a lot of time in the wheelchair. We got to see cousins for Boxing Day, and all that practice on the plastic bed with the transfer board, payed off in terms of transfers from the chair across the board to the passenger car seat and back again at the other end. Back home, and from the car to the chair to the toilet and then back to the chair and the bed is all a major drama, but we made it. I guess it’s all good, and all that effort is a fantastic way to practice skills, even if I am only partially trained and in some danger from overconfidence.

6^th January, and I get transferred from my own hospital south of the city to another where there is a specialist Spinal Unit. Brown bags full of gifts, food, spare clothes, all get shovelled into the ambulance for the ride. Whether I like it or not, status and privacy go out the window, as I am moved into a four bed ward with 3 other blokes all of whom have various levels of spinal problems.

First lesson... Mate, they are all worse off than you! Second lesson… They are the most courageous people I have met in a long time. Matt, in his 40s, who has a complete mid-cervical injury from falling off a roof is in the bed opposite, and has been there for five months, waiting for a suitable home to become free for rent. He manoeuvres into a wheelchair with help, but has absolutely no movement in his legs. And he has no control over his bowels at all – God, I thought I had problems… Chris, diagonally across from me is still in his 20s, and came off a motorbike while demonstrating stunts. Again, he has a mid cervical injury, and again has to be helped to transfer to his wheelchair, helped to shower, but then is mobile, active, has loads of friends, a good family and at least one girlfriend and several besotted nurses. John, in the bed next to me, survived rolling his first car, but when he tried it with the second car 6 months later he was left with permanent cervical spine damage, and has been in the Unit for nearly a year. Again, he has loads of visitors, and always seems to be going out somewhere, mostly down the pub. LOL. He is waiting for a specially designed electric wheelchair, and a flat before he can get discharged. His area of the four-bedder is set up like a personal apartment.

Within an hour, a male physio comes and measures the width of my hips. Woo hoo… I am getting my own wheelchair! You know, pleasure and excitement come from such weird things. LOL.

Later, this beautiful black chair arrives with its own specially padded removable seat; the padding is half solid (at the front), and half malleable (towards the back), and moulds to your body. Brilliant. I am shown some of the mechanics, in particular how to use the brake, and how to remove and replace the footrests. There is special instruction on how to be careful with the footrests (and not damage the feet), how to move the chair forward and then a small movement to the side and back, to place the small front wheels pointing forward (so that when I stand, the wheelie does not tip up). He demonstrated the ‘wheelie’ – leaning back and lifting the little front wheels off the ground. There are 2 stops at the back for novices – which is what I will be when he feels confident enough in my ability to teach me the trick. Cool! Always wondered how they did that. Then he leaves instructions scribbled on my own bedside whiteboard. Most important is physio at 1pm next day…

One extra point. The chair comes with a really fetching individually patterned dilly bag tied to the back of the seat, and with my name on it. For the time being I own this chair! The bag is important (I learn) to carry, tissues, spare pants, cream, wallet, the occasional apple and a couple of other items when moving round the unit and the hospital. Clever. It also means I have to swivel myself round to access various bits from the deeper recesses – hey, I am working on my obliques.

Then, surprisingly, I got a tour of the Unit. Everybody I met introduced themselves, and wanted to know my name; could have sworn they had read this book. Or perhaps there are pockets of good practice, or the system in a specialised and slightly longer term, less acute, unit is different enough to allow good practice. I just have not been fortunate enough to come across it to this point. No written instructions yet, but unbelievable to be shown where everything is. Of course from the physios point of view the centrepiece is the workshop/gym where the equipment looks daunting and includes a fixed car body to assist transfers from chair to transport. How sensible. Can’t wait to get at it.

Despite the fact I am not supposed yet to do transfers without supervision (that’s on the white board too), I do. I’ve always been naughty like that. Just don’t want to waste other people’s time. OK, I’m impatient. I wheel off to lunch (there is such a lot I could tell you, dear reader), then I go to the bathroom, and using the handrails, being very careful, I stand gingerly from the wheelchair and turn carefully to sit on the toilet (Mmm that’s on the whiteboard for future training and observation, too). Ah well.

I arrive on time at physio. Back to a flat bed; I am watched carefully as I transfer across a board, and then we repeat a set of exercises I had done before. Up and down the side of the bed, lift and move – don’t slide. Then moving across the bed, then with feet tucked up, moving the knees from side to side. All with intense observation, but less assistance than I had had before; that’s OK with me. Do 12 and rest; can I go to sleep now? Everything is such an effort. OK so far. Can you lift your bum off the bed; I oblige with feet locked, knees locked and tummy straining. Do 12 and rest; can I go to sleep now? Over on your tummy; now pull your feet up towards you bending the knees. Do 12 on each side and take a rest. Do 12 more. Have a drink of water (with all this effort its important to keep the fluids up). All these exercises appear so simple working on a set of muscles at a time. It should all be easy, but it is all so hard.

Back to the chair and off to the parallel bars; lock the wheels carefully as taught. Every single action has a purpose and has to be considered carefully. I think that is why you get so tired; you get brain fatigue. LOL. Let’s see how well you stand; good, can you take a step, now another, now back and sit down. My right leg sort of behaves, but I am glad that’s it for the afternoon. Did it really take nearly two hours?

Back at my bed, I do the transfer, and then the physio is back. Every dermatome (an area of skin served by one group of nerves) is tested with cotton wool and a pin, every muscle group tested for strength from top down, every joint tested for position sense. The ASIA chart is completed; it will be repeated before I am discharged. Can I go to sleep now? Sure can. Dinner in bed, hospital style, and then Jan came to visit, and that was Monday.

The next day was about getting through the morning just to get to those two precious hours. The physio gym is, as usual, utterly crowded. There is a person paralysed from the neck down, carefully strapped into a tilting bed, and regaining the sense of being upright - sort of taking some weight on the feet and legs. This is obviously painful, and he frowns and grunts and whimpers, but does it according to expectations. I had seen him at lunch the day before, sitting in an electrically powered chair operated from the chin and mouth as far as I could see. He was being fed by one of the nursing staff, given he had little controlled movement of the arms.

A young woman lies on a flat bed with a physio doing passive exercises on her arms, paying special attention to the joints, stretching them and attempting to maintain their flexibility, gently massaging and opening fingers. The young woman weeps silently, but obviously recognises progress and smiles from time to time at this and the odd joke. She likes the constant ambient music and she and the physio sing snatches of song.

A young Korean couple move from exercise to exercise – is she his sister, or his girlfriend? Either way she is focused, caring, smiling and demanding with high expectations. He has a high level paralysis, has obviously been at the unit for some time and made progress. He is adept at manipulating the chair despite obvious problems. But he does get cross from time to time – an exercise he does not like, or too many repetitions. Despite all the emotion, they are delightfully respectful of one another, and everyone else in the room, bowing frequently and communicating non-verbally given English appears to be somewhat limited. Being young, they both pose from time to time in front of mirrors, caressing hair or straightening their smart, obviously expensive, designer summer clothes.

A centrepiece of the room is a half completed car with no engine, and up on secure blocks. This has clearly been donated to the unit, and is covered in signs and decals. Its purpose is to practice transfers in and out of the driver’s seat or the passenger seat. Assessment and practice go hand in hand, all part of the build up to a future with partial autonomy and a disabled driver permit. When you look more closely, you realise the car has not been in an accident, but as been specially designed to work through all the problems that occur when getting back on the road – the dream of every one of us in the room.

Another section has a wall full of wheelchairs and parts, some of them still boxed, in three tiers of racks. A corner has been allocated to repairs, and every day there are one or more physios taking wheels off, changing settings, replacing bits to ensure good working order, and comfort for the client. Patients often sit there in wheelchairs getting instruction about how to dismantle or reset a chair after a collision or a fall.

On another day my room mate Matt gets special instruction in how to fall, and then get the wheelchair upright again from lying on your back. It looks violent and dangerous, and he looks somewhat anxious at first, but gradually learns the weight transfer manoeuvre that gets you up. All part of an advanced wheelchair training class advertised on the whiteboard of the gym. I watch fascinated, wondering whether I will be able to do what Matt has been doing, if and when the time comes. A part of me rejects the idea; I need to get to the point where I don’t need to learn these exercises, thankyou very much. Will that happen? Can I escape this place of horrors and fascinations?

Today’s exercises are similar to yesterday, but more so. More repetitions, more options, a little more pressure. I feel like I am being pushed, but I don’t know the half of it at this stage. The main lesson occurs after Jan visits for the afternoon, so she watches while I transfer to a 2-seater lounge chair. I am then shown how to use the seat of the chair to lower myself down to the floor, and then with my bum tucked into the edge of the seat, taught how to use my arms to lift back onto the seat. We repeat, again and again. Can I have a sleep now?

The days pass, and each day there are new exercises to be learned. I gain a new physio, and very soon learn that she is not particularly interested in chat, does not stand nonsense. The bed exercises get extended each day with new variants. After about a week I find myself on all fours, lifting one of my knees off the bed and pushing back, repeating, and then changing legs. Over several days as that looks too easy, I am instructed to lift the opposing arm while I push back with the leg, then alternate. When that looks too easy, I have to throw beanbags into a bucket, which demands a lot of my core strength. About two weeks later I am kneeling on the edge of one of the beds, grabbing for a grating above my head, holding on, and then nudging a hanging ball in front of me with first one hand and then the next. Repeat, repeat, then rest and have a drink of water.

At the parallel bars, I am taught the detail of shifting my weight forward on the chair, then using my core strength to lean forward and stand. At first we do this holding on to the bars, but gradually the grip is loosened, until one day I find my self standing with no holding on. Guess what, I weep, again.

All sorts of ways of walking are explored. At first tentative step after tentative step with the old death grip on the bars. Then gradually loosening the grip until the day Jan videotapes me walking like a one-year old a whole length between the bars but never touching. When you are tired, sit down. But don’t take a rest, really. “Here is a soccer ball. Sitting down, put one foot on the ground, one on the ball, and move the ball in a circle.” Change feet, change again, change again. “Rested? OK let’s do that exercise standing on one foot with the other on the ball.” “Now Pete is going to gently kick the ball to you within the parallel bars; see if you can kicked it back in a controlled way. OK, now change feet.”

“Today let’s try walking sideways – holding onto the bars.” Now go the other way. Build it up. Now see if you can kick the soccer ball gently and keep it going. Here are some obstacles – bricks, a ball, a bucket, some beanbags. Work your way round them…

“Today we are going to try a walking frame. We could use one with wheels, but we haven’t got one free at the moment, so we will just use a standard one. I am going to put this soft belt with handles around your waist, just to steady you”. Ok take a step, then the other leg. “Don’t lean on it; that makes you bend over. Keep the distance of the frame smaller so that you can stand upright while you walk.” Careful. Let’s try outside… about 20 metres. Here’s a chair. Take a rest. Good, now let’s return.” Sink into the wheelchair with satisfaction, exhaustion, a smile, and a hint of a tear.

Within days, I am told not to take one step and then move the chair and then take another step with the other foot. Rather, try to walk as you would normally, but using the chair for support and security. The belt is surplus to requirements. The frame is left at my bedside, which allows me to practice, and then show off to visitors. But then being exhausted in the evening or at night going to the toilet, I use the chair. A certain sense of security…

Somewhere in here, I have a fall. We were practicing going from a low armchair to the frame, using the transfer of weight forwards and standing, but without putting weight on the frame. Luckily I was on a soft mat at the time. I don’t remember how it happened exactly. One minute I was getting to stand, the next I was on the floor having fallen on my left shoulder. Just sort of went limp. So, it can happen, Mr. Cocky… We practice getting back on the chair, then go back over the instructions about weight transfer. Practice again and again. Mmm, lots to think about. How did it happen so quickly? How can I avoid getting hurt? Mentally I practice some of my old Aikido training to get me thinking about rolling, so I don’t break something. Of course prevention is better than cure. So let’s take this a bit more slowly, Mr. Cocky… Think about every move, look constantly for obstacles, think it through before you get started.

The following week, I am tried in the gym with Canadian crutches. Tentatively, and with great anxiety I step forward. The next day we go outside, initially with the safety belt, and the physio holding on. Dear lady, somewhat diminutive, I wonder what would happen if I did fall. I imagine she would fall with me; can’t imagine that even with all her training she could stop my 95 kgms from toppling over. And then we are going down slopes, across grass, around the barbecues and back up the slope; the next day twice round the circuit.

During the last two weeks at the Unit, there is instruction on stairs. “Always lift the good leg first. Remember: ‘The good go to heaven!’.” Jan is there to watch and help. Lifting the legs to walk is one thing; lifting them to put on a stair, and then put pressure on to lift my weight is entirely another thing. I sweat bucket loads. Starting with one stair, up then down. Alternate legs. “That looks too easy; let’s try going up two stairs alternating legs”. “OK, remember when you are coming downstairs, you must bend the supporting knee. Don’t do it stiff legged. Make sure you are holding on.” “Good take a rest. Here’s a drink of water. Oh, and a towel…” “OK, now let’s try going up several stairs to this platform. Good. Turn around carefully; now alternate legs coming down”. Eventually, when I am on the crutches, we repeat all these exercises going up and down real stairs, and the length of the walks extends form 20 to 50 to 80 metres and return. I CAN do this…

We did a lot of work on a Swiss ball. Initially this started between the parallel bars, so I could grab them if I began to get unsteady. OK, hold the bars, plant your feet well apart, and lower yourself down. Just sit there, get used to the movement and the control. Easy… “That looks too easy. Bring your feet in a bit. Good. Just sit there for 5 minutes.” “Mmm. That looks too easy. Try putting one foot in front of the other (wobble, wobble).  OK, perhaps just 10 cms apart. Try that. Good. Just sit there for 5 minutes.”

A few days later, while sitting on the ball, I was confident enough to let one hand go, and thought I was very clever. Until ““Mmm. That looks too easy. Just widen your feet a bit. Good. Now take both hands off the bars, and see how long you can manage. Just sit there for 5 minutes.” Of course being me I got a bit bored with that. It struck me I could try a Kata from sitting down. Slowly I tried Kata Tensho, initially without the expected breathing pattern, later adding the breathing pattern. What was fascinating, was that sitting still and doing nothing, I had immense problems keeping my balance on the ball. Random or jerky movements lifting my arms made it ten times worse. Doing the Kata, I guess I was focused, and drawing on experience of many years of keeping my core (my Hara) tensioned. I was as steady as a rock. Amazing. Amazing that the movements under the control of years of practice, even though they were strong, seemed to settle me, centre me. And I was rock solid. Until I stopped, and then a few seconds later and I was all wobbly again. So, do the Kata again, and then again. “That looks easy for you. Let’s go and do something else…”

A final fun note. The door to the Physio Dept is a sliding automatic door. Of course this is important for people in wheelchairs, because it is not easy to push forward and sustain that until you are pretty experienced. First problem was that you had to be in just the right spot for the sensor to pick up that you were there. OK, a bit of practice and you get it. Then you have to get a move on with the chair, because the doors closed just that bit quickly, I guess to keep the air conditioning in the Dept. Well that’s not too much of a problem in a chair, because if they close, then mostly it is onto the wheels of the chair, rather than you. So one day late in my month of training, I was going through using a walker… You guessed it, I was just a bit slow. The jaws of the doors closed on my hips stuck out more than they should be toward the rear. I swear it was a test. I could just imagine my physio saying “Mmm, that looks a bit easy going through the door. Let’s see how you manage this…” LOL. Pure paranoia, of course. But it did teach me to stand up a bit straighter, and walk just that bit quicker, and keep my bum in.

When I grow up, I want to train to be a Physio. Just think about it. All that carefully graded process, with reassessment and carefully graded challenge, moved me from a wheelchair to walking, in somewhat just over a month. A miracle.

A word to the wise: “If someone asks you to do ten things for your own good, always try to do twelve.”