LSBU: OT Student Society

Billy Mann joins the fun-loving gang of OT students at London Southbank University for their annual conference

Walk this way

I was invited recently by Headway East London, where I am a member, to talk to students at London Southbank University (LSBU) about Occupational Therapy. OT is a thriving department at LSBU, so much so that the OT Students Society holds an annual event in which they all get together to discuss the current issues facing their chosen profession and invite guest speakers to contribute. That's where I came in. Headway East London has a longstanding buddy relationship with the university and conducts training seminars at which students get to talk directly with people who have experienced brain injury.

For my own comfort, I always try to make my contributions to these events simple. I am no expert in brain injury, and neither do I have ambitions to be so. I just tell the story of my stroke and the aftermath in the hope that it fuels questions, which I try to answer as best as I can. I enjoy the process most when I can persuade an expert to join in just in case I panic and start fluffing my lines. My partner at this gig was Headway East London Clinical Lead Amanda D'Souza, who also kindly projected some pictures on to a screen while I ran through my jibber-jabber.

I got some good questions from the LSBU students. They asked me how OTs had contributed to my recovery. They asked about the classic OT-physio tag-team partnership that prevails. I said in my case it worked best as a threesome, OT-physio-patientclientserviceuserorwhatever, where we all fed off each other to advance the therapy. This, I said, could only have happened if we trusted one another. Happily, we did. 

In case I fluffed my lines

The title of this event was The Power of Occupation, its subtitle "maintaining professional identity in the face of change". I detected from this and from some of the questions that all was not happy in the land of OT, that they were feeling neglected and undervalued as professionals. 

This was not exactly a shock to me, but from the impressive display of organisation and attendance I was seeing today, I was surprised the LSBU students were struggling for status and recognition. It seemed to me like they were at the top of their game, and embracing it all with relish. Four years earlier, when I was in the neuro-rehab unit at the National Hospital for Neurology and Neurosurgery (NHNN) in Queen Square, London, my OT had told me that Occupational Therapy was misunderstood and its therapists unsure of their identity within the nhs. OT is a broad church, covering a large area from behavioural OT to hardline neuro. I mused to the LSBU students that one day new names for jobs might need to be invented. I don't think this offered them any comfort, and nor did my pronouncement that after a conversation one day with Headway East London OT Natasha Lockyer, I had come to define OT as a subspecies of Anthropology or Ethnography. I saw it as "the science of how we do things".

I had started my talk by telling the students that earlier in the day I had bumped into a neighbour, a head teacher at a special needs school, and told her that later I would be talking to OT students. "Ohh, I love OTs," she said, "and they make the best managers ever." This was a positive start and I'd tried to find a catchy soundbite to finish my talk, but as the endpoint neared, "Everyday OT is the key" started to sound flimsy, so I told them how my wife uses OT to get me to do chores. When she wants me to do things like set the dining table or empty the washing machine, she finishes her request with "It's good OT". I have a feeling she could be right about that.

Lightbulb moment: Freewheelers Day

Politicians, celebrities ... you might think you know all about disability. You can obviously talk the talk. But where do you finish when the chips are down, asks stroke survivor Billy Mann

Just before Christmas 2016 my wife and a friend took part in a 5k Santa Run in aid of Headway East London, where I have been a member for 3 years following a stroke. It was a fantastic day, full of goodwill and festive fun, staged in London's Victoria Park. Families gathered to watch the would-be 'Olympians' struggle into their allotted Santa suits and run/walk/stagger/jog around a pre-determined route and finish out of breath but with a warm glow. Medals awaited their sweaty necks.

A winner's medal awaited everyone

There were many things to admire about the event. The runners (thousands) all represented different charities but were running together in one place at one time. It was an impressive demonstration of collective action in costume. Other runs took place simultaneously all over London. Victoria Park is big and flat. This makes it ideal for the Park Run people to get together and go for it. The park's flatness also lends itself to activities such as All Ability Cycling, where people with a range of disabilities, whizz around safely on specially adapted bikes such as arm bikes, tandems, recumbent bikes, easy riders and trikes.

Another positive on this briskly cold day was the event coordination and management.  There was an orderly queue to collect your daft Santa outfit (which you get to keep). A sound system pumped out hard-rocking running anthems and victory songs. Food and drink stalls kept the spectators (some courageously dressed as Elves) sustained. But top prize goes to the toilets, vintage white plastic boxes that sealed the whole occasion as being more like a music festival than anything else.

So it isn't hard to imagine the potential of all this combined effort, and one of the bees in my bonnet ever since leaving hospital after my stroke was the difficulties faced by wheelchair users and the attitudes of their busy able-bodied fellow citizens, issues exposed by Channel 4 during the 2012 London Olympics/Paralympics. Boris Johnson was still Mayor of London at the time and my favourite imagined punishment for him for not dealing with this was an initiative in which he was forced by public pressure to use a wheelchair for one working day in every year. This, I felt, might bounce him into action.

Are today's leaders match-fit for dealing with disability?

Now I have a better plan. One day in every year should be designated Freewheelers Day. On this day, the leaders of political parties, councils, big organisations and anyone else you can think of, race each other around a flat designated circuit such as the one in London's Victoria Park (there are such spaces all over Britain). Others can follow behind in their wheelchairs or with pushchairs, their friends and families cheering all the way with scalding hot cups of Bovril in their hands. Watch as Theresa May and Jeremy Corbyn try to viciously crash each other off the track. Hotshot celebrities such as Jeremy Clarkson could go wheel to wheel with, say, Steve Coogan. Bring it on. The sound system will explode to the sound of Bat Out Of Hell and Born To Run, and from that day on until the same time next year, everyone will show a bit more understanding for the other person.

My Stroke Journey

Art gave Billy Mann a chance to tell the story of his stroke in an unusual and often graphic way

My annual visit to the National Hospital of Neurology and Neurosurgery in Queen Square, London, to deliver some macaroons and Vin Santo to the therapy team for Christmas, got me feeling sentimental. I realised that visiting the Neuro Rehabilitation Unit (NRU) on the second floor has become like returning to your old school. Memories come flooding back. Seeing the patients travelling the same rocky road I did four years ago is a wrench, riddled with pain but saved by an overwhelming sense of hope. So much happened here for me. It is where my life was put back together. It was a rebirth. So, as naff as that sounds, I feel quite attached to the place and to the people who helped me during my two-month stay. 

Most of them have moved on, but Anne Fleming, who dealt with social work issues, was still there and full of good spirit and a still unfeasibly straight fringe. I deposited the festive goodies with her, asked her to pass on my best wishes to anyone who might remember me and put in a plug for an exhibition of paintings by survivors of brain injury from Headway East London art studio, Submit To Love. 

It wasn't such a shameless plug since I have a series of five paintings included in the exhibition depicting my 'stroke journey', and as already stated, NRU played a key part in that. Each of my paintings includes a hand-written paragraph describing the five 'chapters' of the past four years, from the moment of the stroke to my life as it is today.

The first, 'Surrender' attempts to illustrate the period from the initial trauma to when I went into surgery.

Surrender

The second picture, 'Oblivion', is all about what happened in surgery.

Oblivion

The third, 'Confusion', examines what happened after surgery when I was in and out of ITU and then on the stroke ward.

Confusion

The fourth painting in the series, 'Survival', covers the sink-or-swim experience of my stay in NRU, where the chance to start again kicks into action.

Survival

And the final picture, 'Release', reflects of my life since discharge from hospital in February 2013 and the shape it has taken since then.

Release

I could bang on endlessly about these pictures and their meaning, but the blunt truth is that, once they were finished, I was glad to see the back of them. I was bored with myself, and right now I don't care if I never see them again. Sometimes the right thing to do is to simply let go of what was and what happened. Strange, though, I can't imagine losing the tiny bit of love I feel whenever I visit the National Hospital in Queen Square, and long may the macaroons continue to be delivered.

The exhibition of paintings by members of Headway East London is at Stratford Circus Arts Centre, London, until 23 February 2017.

Wet, wet, wet

You might have sat comfortably during the 2012 Olympics and gazed at the pictures on your telly of the Zaha Hadid-designed London Aquatics Centre and wondered whether it was as impressive in real life as it was as seen through the  lens of a TV camera. Let me answer that question. Yes. Yes. Yes.

And it’s not just a stunner on the outside. Despite the modifications that took place before its 2014 opening to the public, the huge interior is a dream just to walk around, even before your nose catches a whiff of chlorine. The views of the 50m tournament race pool and 25m diving pool recall instantly memories of the moments that took your breath away during those glory days in the summer of 2012 (was this when Michael Phelps officially became ‘the greatest swimmer that ever lived?). The overall effect is somehow magic, and even the signs to the changing rooms start to look full of grace, visual harmony and touched by the hand of triumph.

Now, here we were, a willing contingent from Headway East London, itching to see if getting wet could do anything for brain injury.

My own post-injury experience in the shallow end is meaningful - to me at least. Shortly after discharge from hospital following a hemorrhagic stroke, I was assigned to a therapy team from London's Homerton hospital. A physio and OT visited me at home and devised various exercises and routines that might aid my recovery. On one such visit we went for a swim in my local pool. The OT was at first concerned how I would manage getting in and out of the pool. Her worry was short-lived as I pre-empted any practical what-have-you by simply throwing myself in. 

Hitting the water and being bathed instantly in its warm, forgiving embrace was a moment of sensuality words cannot do justice to. Four months of deprivation in a hospital bed might well be the psychologist's explanation, but ‘bliss’ is as close as I can get to describe the sublime feeling.

I'd like to say that in that single moment swimming became an essential post-stroke exercise for me. That would be a lie. But what I did find on our group visit to the Aquatics Centre, in between some infantile splashing of my fellow Headway members, was a new way to use a swimming pool. Some of the yoga and tai-chi routines that Headway Therapy Team offers regularly to its members are given a whole new dimension when tried in a pool. The soft resistance of the water slows the movements and provides weight support for those with balance problems. Falling over in a swimming pool is no biggie. It's fun, actually.

So, expect to see me in swimming pools more often from now on. The legacy of London 2012 is alive and kicking, despite all those doomy predictions. It was shortly after attending events at the Games that the stroke hit, leaving me for dead. I can’t be sure, but I like think that the courage, determination and sheer strength of will I saw in the athletes helped things turn out differently for me, so if anyone ever tells you those Games were a waste of money, tie a brick to their foot and throw them in the deep end.

Bend it like Billy: Yoga

If I turn into a Yoga Bore, feel free to shoot me, says Billy Mann. In the meantime ...

To the innocent bystander, the transition from tai chi to yoga must seem like swapping a boiled egg for a poached one. Yes, the two disciplines do have similarities, not least in this case because again we are in the capable hands of Anne and Nora at Headway East London. The key differences between the two (tai chi and yoga, not Anne and Nora) are movement and breathing. Breathing is much more of a BIG DEAL in yoga, and the movement is more structured than in tai chi, aimed often at specific parts of the body. Moreover, whereas you can adapt tai chi exercises into something you can do easily at, say, the bus stop, or in the kitchen while waiting for the kettle to boil, yoga demands more focus, a focus that leads you to "feel" the movements and stretches. 

We started the programme seated, which is a gentle way to introduce the movements. The Cat-Cow is a movement that stretches the back and neck by first rounding the shoulders forward then reversing the movement back while tilting the pelvis, arching the back, extending the chin and chest into what is hopefully a sort of elegant s-shape. Not sure I quite hit the mark on that one. The word elegant did not spring to mind. We went on to do some moves where we sit, hands together, elbows pointing right and left, in a sort of praying pose. Then we breathe in, extend our praying hands skyward as if reaching for heaven, then hold, breathe out, breathe in, extend hands towards the outer reaches of the universe, and hold, breathe out, breathe in, and slowly move your arms back to planet earth in a forward stretch that again arches the back, sticking out your chin and staring meaningfully at that spot on the wall. You then bring your arms first down to the side of your chair, then gather up your hands into your lap in what is supposed to look like a dignified, enigmatic yoga-type pose. I was convinced that I looked the part, but that could have been delusion kicking in.

If this is as far as I ever get in yoga, I shall be quite happy. The Cat-Cow thing could, in my view, be done easily while sat on the toilet. Who knows, we could have discovered a revolutionary aid to comfortable defecation? Send me the cheque. Anyway, I have already been able to build it into my daily routine to the extent that I can sit, stock still, in a straight, aligned and yogistically perfect way (or so I imagine) watching Midsomer Murders and not feel like a dickhead. It helps having a wife who is a Yoga Bore. 

So, well done Yoga. Well done Anne for making it so easy for someone who probably would have previously shot anyone who dared to suggest my life might be improved by this Total Hippy Nonsense. I was wrong, you were all right, and I surrender. Defeat, bring it on xx

Out on a Limb

Nora began the second Tai-Chi class at Headway East London by saying that this week there would be less talking and more action. I'm not sure ACTION was the best word for the level of tai-chi we are at, but you can see where she's coming from.

We revisited the moves we had been introduced to in the first session, but Nora added some seemingly small additions. This, I have come to realise, is very much the tai-chi way, to build very slowly but deliberately. The ball thing is still an enigma wrapped in a mystery for me, but by 'shrinking the size of the ball' to something like the proportions of a tennis ball, I think I might have found a way forward. I even found myself cautiously handling an imaginary sphere during the ad break in Midsomer Murders. Thank goodness I was safely hidden indoors because I must have looked like a right weirdo.

The weight-shifting from one foot to the other in the standing position also progressed to include lifting the heel of the resting foot. This tests the strength and balance in both legs and increases your awareness of any limitations. Nora described this action as floating, but for me it was more of a spring in the step. 

These additions to what we had already learned further established the idea that practising ta-chi is for life and not just for the duration of a short programme. For me it has multiple advantages. Unless I can make exercise a routine and a habit, it is something that becomes all to easy to neglect. In this sense, tai chi  is a good fit because already I actually ENJOY doing the moves. This might have something to do with their simplicity, but who cares? Simple is OK by me. And if I enjoy doing something (writing and drawing, too), I am more likely to continue. As that man says in the film Casablanca, this could be the start of a beautiful friendship.

The slow movement

Today at Headway East London I joined a six-week introductory programme in Tai Chi, run by physio Nora with assistance from Anne. I had some limited prior experience of Tai Chi and had found some of the very slow, low resistance movements, as opposed to the high energy combat stuff, useful in everyday life. The basic moves are relaxing and offer an opportunity to focus and think about nothing in particular. 

We practised some centering and balancing positions before moving on to that thing they do with the imaginary ball, which I had never previously been able to get the hang of. I am not quite sure I got it this time, either. Maybe I was allowing my "monkey mind", or whatever it is called, to boss my head around too much. But I did manage eventually  to get some sort of meaningful movement to work for me by rotating my hands, so that rather than holding the imaginary ball with both hands parallel and facing one another, I held  it in a position in a way that looked like a polite handclap poised and waiting for the moment of contact. That is about the best description I can come up with, I'm afraid.

The other tip I have taken and exploited from Lesson 1 is the balance and centring movement in which you stand, feet hip-width apart, and very slowly and almost imperceptibly shift your weight from one leg to the other, attempting all the time to 'root' your feet in the ground. This movement is very relaxing and almost hypnotic/narcotic in how it forces you to surrender control of your body. It progresses to a tiny lift of the feet on to your toes with each movement. This offers up the kind of dancing motion I have been searching for and is one movement I will be using a lot. It has also helped in developing a method of walking (without stick) in a gentle sway, which I hope will come to relieve some of the pressure my current robotic style of walking inevitably places on my hips and knees. 

Things for me to work on are deep breathing (in and out through nostrils) all the way down to the abdominal core. I can do this in isolation and feel the benefits, but doing it while in movement is, for me, a different matter. I shall keep going with that and report back. 

As Nora told us early on in the session, you are a beginner in Tai Chi for at least 10 years. 

I'm in no hurry.