Bridges in a Group: the final episode

Lemon Polenta cake, Scottish shortbreads and Malteser chocolate bunnies: I could get used to hanging out with stroke survivors.

I’m only half joking. This outbreak of gluttony came at the start of the final session in a PhD study by Ella Clark at UCLH into testing Bridges Self Management for stroke survivors in a group setting. We were all stuffing our faces and grinning madly.

Bridges is a project pioneered by Prof Fiona Jones at St George’s hospital in Tooting, London. The mission is to help stroke survivors build their own step programmes to meet long-term goals set by themselves. These goals vary in the widest sense, but the Bridges approach seeks to find a series of baby steps by which big gains can become part of everyday life. It’s a method that will work for some but not always for others. 

Motivation is a key player in progressive recovery and these four-week trials were part of a study to see if fellow group members (6-8) could play a role in the process by offering mutual support. In the three trials I helped facilitate, the goals of the group members varied depending on the individual, any support they might or might not have, and in the ways their stroke had impacted on their lives. In the second group I joined, one member wanted to try to regain some of the problem-solving skills he had lost. He mentioned crossword puzzles and arithmetic in particular. Another member defined as a goal writing and signing a Thankyou card for her daughter and her husband.

It is always fascinating to watch small-group dynamics unfold. You instinctively reach for the reality-TV stereotypes and make snap judgements about personalities, only to be confounded in the next session by behaviour in total opposition to your initial prejudice. Baddies become goodies and that bossy boots turns into a pussycat. The relationships between individual characters are thrown into relief and you sometimes end up siding with the person you thought at first you would dislike the most.

Group members respond in different ways to different types of stimuli. One identified her goal as getting back to cooking and entertaining. The stroke had left her unable to plan, organise and implement a dinner party for friends. Fatigue wiped her out and the mere thought of it built in her mind to become an impossible task. 

By just talking about food, the group learned of some of her favourite dishes and the special ways she prepared them. All of this took place in the context of a natural conversation, so when it was proposed that she might cook a cake for the group, a competitive twinkle appeared in her eye. She wanted to show us she could do it. And she did. The lemon polenta cake mentioned in the opening paragraph is the proof. The zing of the lemon was a sensory delight. 

But her determination didn’t stop there. She had also completed and fed friends with specialty dishes of lamb and salt beef. She was obviously on a roll. If we were giving out marks, she passed with distinction.

A recurring issue among members in all the groups I was involved with was whether the post-stroke difficulties they now face and experience were related directly to the stroke, or whether they were part of natural ageing. Forgetfulness was the chief example. This was especially the case among some of the older group members.

Balancing time with health needs emerged as a another challenge. Take on too much and it might end up costing you in terms of stress and fatigue. Take on too little and it seems like you are treading water, stuck in a rut, but all the time feeling you should be more dynamic, making more progress, just doing things. 

One member talked about withdrawing from what was once his very active participation on neighbourhood committees and working groups. He had taken several steps back and, by rationing his time more selectively, was able to focus on and tackle a specialist academic mentoring role, which had proved far more personally rewarding and much better suited to the skills he had built over many years. 

But in stepping back he also stepped forward to wrest control of low-key domestic aspects of his life from his children, who had intervened to ensure his comfort. He was calling the shots now and, bit by bit, nurturing a newfound self-reliance.

Towards the end of the final session, one of the group asked Ella if she had a title for the published study that would emerge from these eight group trials. Not yet was her answer, so cheekily I asked the group what might be the key words that would help Ella come up with a successful title. 

Earlier in the session that day I had tried to summarise the essence of the past four weeks. In my notebook, I had written “the power/potential of peer support”. Looking at this now I am horrified by its inadequacy. In collecting the thoughts of the other group members, the word that won the day was “sharing”. 

Throughout the final session, many of the group had identified in their own ways the importance of sharing. One member spoke of how rare it was for her to share her stroke experience with people who could readily empathise. She said she no longer “felt so alone”. Another talked about how positivity breeds positivity and that the group sessions had somehow almost magically instigated an outbreak of optimism. 

Sharing is one of the enduring themes of the early 21st century, much of it enabled by the world wide web. Touch that SHARE button on your digital device and look at the ever-growing number of platforms across which you can connect with others: Facebook, Twitter, Instagram, LinkedIn… 

Yet, yet, yet… sharing a traumatic experience with relative strangers is not easily done. The group found that doing it in person, face-to-face, with all the risk any kind of human encounter throws up, was overwhelmingly positive. One group member used the word “transformative” and, when pressed, explained how, as bad as having a stroke is, in some respects it offers an opportunity for renewal, a chance to become a new person. Another talked about life after stroke as an exercise in planting seeds. These, for me, were both fitting remarks to herald the onset of Spring and to end what had for me been a fascinating experience. 

See the lemon polenta cake recipe

Trust World Café: stroke care

An initiative to put good communication at the heart of stroke treatment got off to a lively start. Billy Mann reports.

Tess Baird is an unstoppable force. In November 2016 she gathered together a few colleagues and contacts in a small room in London's Mile End Hospital to explain her bonkers idea. She wanted clinicians and service users to get to understand and communicate with one another in more meaningful and effective ways. The subject in focus was stroke care, which is how I got the call, being a stroke survivor. She reckoned this new groundbreaking bond between patient and practitioner could be found using something called a World Café. I posted a report of that meeting shortly after it took place.

Table talk

Grand ideas often get lost in what is sometimes called Development Hell, so I turned up to that first meeting, made whatever kind of contribution I could and went home expecting the idea to fizzle out. It didn't. Emails were exchanged and the spark generated at the first meeting was oxygenated into a comfy campfire, around which a whole bunch of people (plus one newborn child, Leo) sat early in the new year to thrash out some ideas for how quality communication might flourish on the stroke ward. This event quickly got its own hashtag, #trustworldcafe. 


Seven round tables in the Garden Room at St Luke's Community Centre, London EC1, each hosting five or six people, fired up and the room quickly took on the buzz of the marketplace, the sound of chatter and earnest declarations bouncing off the walls. Hot beverages were taken and posh cake digested. And to think some people were pretending to 'be at work'. 

Question 1

The event swung around four questions. The first asked us to talk in pairs about a time we "totally trusted someone". What was the experience, what did it feel like? I got chatting with someone who told me how they had 'bonded' with their partner over an intense dislike of dating. As described to me this was a proper meeting of minds and outlook that was recognised instantly by both parties. They saw it as an 'opportunity' and both were 'relieved' to have found a sympathetic ear and a glad eye. It was heartwarming stuff. 

Cloth ears

We then moved the topic from the personal to the professional and asked what made trusting relationships function in the workplace. The answers we arrived at jointly sounded like statements of the bleeding obvious, but put under intense scrutiny started to carry more weight. All the time we were jotting words and phrases on to a paper tablecloth. Lines such as "say what you do and do what you say" and "deliver on promises" put some flesh on to the bones of everyday exchanges that involve trust, and which without trust would collapse. Relying on others is how our lives function.

Question 2

From working in pairs we moved to working the table, exploring within the group the mechanics of trust and how that might be nurtured. I learned of one stroke survivor's desire to ride a horse again, having grown up around horses in Romania. By now an artist had been earwigging at each table and was busy creating a 'live graphic' of our thoughts. It was worth stopping just to watch as she gave visual birth to all our ideas.

The #trustworldcafe 'live graphic'

The questions continued. We moved tables, went into huddles, struggled to find answers, but didn't give up. There was still plenty of cake left. At one table I put forward the idea that every 'hard', factual question a patient is asked by a clinician should be offset with a 'soft' question that gently explores the patient's life outside hospital. Cat or dog? was the example I used in a round-the-table demonstration (our table: three dogs, one cat and an awkward "cat and dog"). Questions about football, hobbies, telly, films, etc, can provide the therapist with valuable 'clues' that might open a window of opportunity on how best to advance treatment. There was some concern as to how what is essentially small-talk can be parlayed into 'productivity', the looming presence of a cash-conscious clipboarding nhs manager being the sticking point. I'm not sure my attempt to liken this kind of information-gathering to 'detective work' found any buyers. 

Libby and Aoiffe

So what did I learn at the #trustworldcafe? Too many things to list here, so please check the Twitter feeds for details. But if I had to pick one it would be at the beginning of the session when, by way of a warm-up, Tess gave us a list of questions to ask each other. The last of these was something like, "What is the craziest outcome you can imagine springing from this #trustworldcafe?" To illustrate, Tess told us her answer. It was that news of this event's runaway success reaches a rich publisher, who invites Tess to write a book about it, earning her £4million. Her newfound wealth somehow puts her in contact with George Clooney, who promptly ditches his existing wife and marries Tess. And everyone lives happily ever after. Such is the power of the hashtag.

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.

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.

Memory: the elephant in the room

When he noticed that song lyrics seemed immune from memory loss following brain injury, Billy Mann got to wondering what it is exactly that stimulates our ability to recall and recollect

There are advantages to having a brain injury. At social and formal gatherings you are allowed to forget things. You can walk into a room, be introduced to half a dozen people and instantly forget their names. Then, when you bump into one of them later, they forgive you when you whimper, pathetically, “I’m sorry, but I’ve forgotten your name.”

Memory problems are very common among people with brain injuries. One day a week, I attend Headway East London in Hackney. Some of my fellow members there cannot remember my name from one moment to the next. One of them, Sharon, who I have now been happily greeting each week for around two years, stares at me, her face screwed up in quizzical concentration. 

“It begins with a B...” she says. 

“Yes,” I answer, and wait a few beats. 

“Bobby?" 

"No. Billy." 

That we have arrived at B in two years is, I like to think, some kind of minor miracle.

Another member I see regularly is Stuart, who also suffers from acute memory problems. Stuart and I have a part-share in a backstory. We are both a similar age and we both lived in Liverpool during the late 1980s. Like Sharon, Stuart greets me each week with a confused and inscrutable look. He will then take a guess at my identity. 

"Scouser?"

What both Sharon and Stuart share, other than their difficulties with short-term memory, is a love of music. In Sharon's case, this comes down to a girlish infatuation with The Osmonds, an American family group popular in the 1970s. They were five brothers — Alan, Wayne, Merrill, Jay and Donny. Other Osmonds (Mormons, big family, etc) also enjoyed some commercial success on the 1970s music scene, notably Marie with a memorable song, Paper Roses, and Little Jimmy Osmond with a cheeky number titled Long Haired Lover from Liverpool. The Osmond Brothers themselves had many hit records, but the one that comes to mind right now is 1974’s Love Me for a Reason. It comes to mind because with those five words Sharon's memory is thrown on to some kind of neurological dancefloor and the words come flooding back: 

Don't love me for fun, girl

Let me be the one, girl

Love me for a reason

Let the reason be love

In 1995 the boyband Boyzone attempted their own version of the song, but as Sharon is quick to remark, it was nothing on the Osmonds’ rendition. She might have put it less politely.

The routine with Stuart is similar. In his case we have an ongoing exchange relating to music from 1970s-80s Liverpool (Stuart was a performing musician in the city then). Our first meeting point each week normally involves an exchange of lyrics from a band associated with Liverpool called The Scaffold, a trio that actually started in the heady days of the 1960s and enjoyed notable success during that swinging decade. They were a performing ratatouille of comedy, poetry and music featuring Mike McGear (real name Peter Michael McCartney and brother of Paul McCartney), Roger McGough (he’s that Poetry Please guy off the radio) and madcap funnyman John Gorman. Each week Stuart will smile brightly in my direction and say “Thank you very much for the Aintree Iron” (a line from the Scaffold song Thank U Very Much), to which I will reply “Did you get your medicinal compound, Stuart?” (from the Scaffold song Lily The Pink). Stuart catches on to this game without hesitation and answers with another lyrical reference to Lily The Pink. 

“Yes, most efficacious in every way.”

Clearly both Sharon and Stuart have a thing about song lyrics that makes words stick in their heads. It is a joy to witness, and obviously a potential open door for therapists. But part of me wonders what other memory triggers are sitting hidden in damaged brains everywhere. Could I, for example, attempt a not-so controlled experiment in which I appear casually to mention the character Boss Hogg from the 1980s US TV show The Dukes of Hazzard while actually fishing for a bit of anecdotal evidence on the importance of popular culture in understanding a badly misfiring memory.

Memory is a strange fruit. It is part of that thing we would like to call our soul, but we know little about it. At best I am prepared to stick my neck out and say that memory is the slippery customer that skates the thin ice that separates the neuro from the psycho. There is also something about memory that repels fiddling. Mess around with it and you risk the wrath of the gods, etc.

Which draws me back to where I started. There is another advantage to having a brain injury. I call it the Automatic Exit Strategy (AES). When you are at a social or formal gathering and starting to glaze over with boredom right in front of someone, you can just say, “Sorry, I have to go now” and they won't turn to the person next to them and say, “How rude was that?” I have an agreed version of this with my wife. I say, “I’ll just go and sit down and shut up, shall I?” to which she replies, “Yes, please.” 

OK, then, that's my cue to leave the table. Bye for now. And don’t go trying to tinker with any of those memories while I’m gone.

Sharon is not her real name.

Club 300 Closes: but did it work?

A project to test the theory that 300 repetitions results in improved performance has come to an end. And the results are in. By Billy Mann

The Occupational Therapy project at Headway East London I posted about a while back has now finished. To recap, Club 300 as we cheekily called it, brought together four members of Headway East London, each of whom wanted to gain some improvement in the execution of an everyday task. Two members wanted to improve their handwriting, another wanted to cut up food on a plate more confidently, and I tasked myself with the mission impossible of walking without a stick while holding a cup of water in my weaker left hand. 

If you want detailed information on the results of this exercise, the OT in charge was Natasha Lockyer. I cannot discuss how others performed, but to finish the analysis, the tests we performed at the start were repeated at the end and the change recorded. At the start, I had walked a given distance (not sure what it was) holding a cup in my left hand filled to near the top with water in 46 seconds, and I spilled around 10ml in the process. At the end, I walked the same distance in 18 seconds and spilled no water. Get me, eh? Top of the world, Ma.

In my daily executions of these 300 steps, I determined to make the task more difficult as my performance improved. This, I am afraid to say, has fallen by the wayside in favour of basking in the success of spilling no water. Still, I do continue to perform the routine every day (or thereabouts) and continue to notice a difference. I shall report on my progress as and when something of interest happens, and I will ask Natasha if a re-run of the test in, say, 6 months is possible. Only then will I be able to declare Club 300 a giant leap for mankind.

One Small Step: Learning to carry a cup

Learning to carry a cup in my left hand, while walking. It's not as easy as you think, says Billy Mann

This is the third week of an Upper Limb OT project I am following devised by Natasha Lockyer at Headway East London. The idea is based on research that has indicated that 300 is a magic number of repetitions post brain injury to deliver meaningful brain change. So, if you perform a given routine activity at 300 repetitions daily, in this case for 6 weeks, lasting improvement in the execution of that task will result.
This sounded plausible to me, so I said I would give it a crack. We have called the group Club 300 for a bit of a laugh. One member of the group is practising cutting food (ie, Theraputty) to develop the fine motoring of her right hand. Two others are working on handwriting. My task is to walk 300 steps daily with no walking stick and a cup of water in my left hand. This is a sort of continuation of therapy I was introduced to at a 3-week intensive Upper Limb clinic I attended at London’s National Hospital for Neurology and Neurosurgery earlier this year.I think it is probably a statement of the bleeding obvious that this regime got off to a stuttering start. Having made some initial measurements as a benchmark against which progress can later be recorded, I set about repeatedly walking back and forth with a cup of water in my left hand. The movements, as Headway East London staffer Anne noted, were comically robotic. I managed to tip water all over myself on several occasions and came away from the session with a very wet pair of quite expensive shoes. Slowly, however, and with Anne’s help, I started to improve. The main problem for me was one of focus. My concentration flitted from the cup of water to the uneven paving in front of me. With practice, and via a not entirely unexpected echo of the ‘cognitive distraction’ I have described before, I found the best results (ie, not much water spilled) by fixing my attention on a distant object (in this case, a wall) and humming a tune while walking. 
As they say in court reports, the case continues. Watch this space.

Talk The Talk: 'Finding words' after brain injury

'Finding words' after brain injury. The process of discovery can be both bewildering and endlessly challenging, says Billy Mann

I read a report recently with the headline Comedians’ ‘gift of the gab’ linked to differences in brain activity and it occurred to me that as I have recovered from the effects of a stroke more than two years ago I have become more articulate. I have no idea whether the two are causally related. In fact, I have no idea whether I have actually become more articulate (my wife is doubtful), and I am not sure how this could ever be measured. All I know is that the words seem to flow more easily, if that is a definition of articulacy. I cannot be certain how easily they flowed before my brain injury, but I do recall incidents in which I felt “tongue-tied” or “lost for words”. Now instead I sometimes feel verbally incontinent. The experience of not finding the right word at the right time is not unusual. Who has not emerged from a stalled conversation and not reflected later that “I wish I had said that…” Not now. Not for me, anyway. In fact, I suspect sometimes that my brain injury has left me with a special variant type of Tourette’s in which I can’t stop saying what I think. 

Show me the money: motor learning

Can cold hard cash deliver improved upper-limb performance? Billy Mann didn't wait around to find out. He was too eager to bank the profits 

I recently took part in a research project at the National Hospital for Neurology and Neurosurgery in Queen Square, London, which aimed to test and record motor learning skills. The test used a specially constructed mechanical arm, which is operated by the test subject to different specifications and under different constraints. 

Very simply, my stroke-affected left arm is placed in a moving mechanical arm beneath table-top screen at the centre of which is located a cursor. At given intervals a square appears randomly on the table-top screen into which I was required to move the cursor as quickly as possible. This is measured by the researcher as data and analysed in some way. To mix it up a bit, a spring resistance is added to the mechanical arm to alter the difficulty of the task. So, if the target square appears randomly in the 10 o'clock position, my attempt to move the cursor to that target is thwarted, as if somebody is pushing my arm in the opposite direction. 

To mix it up further, in one test, each successful meeting of cursor and target is rewarded with a point. And each point is rewarded with a monetary value that I struggled to determine. I scored enough points to pocket £31.60.

Search for the hero: goal setting

Motivation – where does it come from? By Billy Mann

I occasionally ask myself to what extent the small and slow improvements I make in my post-stroke rehabilitation can be attributed to the fantastic work of the therapists I have been lucky enough to work with, and to what degree are they attributable to my own determination and focus along with my personality. The short answer is probably both, in roughly equal measure. The long answer is that I am the hero really, the star striker, and all the health professionals, family, friends, colleagues and people who have input into my life in a positive way since my stroke are the rest of a very successful team.

Back of the net: goal setting

Can football help in post-stroke recovery? with Kevin Keegan and Kenny Dalglish on your side, anything is possible, reckons Billy Mann

In April I took part in a conference on post-stroke goal setting at the National Hospital for Neurology and Neurosurgery in Queen Square in London in which I was interviewed by Homerton Hospital physiotherapist Katie Campion. She was presenting on behalf of Bridges Self Management, whose stated aim is to "enable people living with long-term neurological conditions to take control of their rehabilitation and daily lives”. 

During the interview I alluded to ‘goal’ scoring, as in a football match, and spoke of my childhood memories of watching my heroes Kevin Keegan and Kenny Dalglish in action. The goal was, I said, the thing we remember most about the game, the ball struck by a player hitting the back of the net. Then the crowd goes mental. Nobody remembers the goal nearly scored. But, I said, a great goal is often the product of a series of “baby steps”, a collection of passes, tackles and other tactical movements that culminate in a star player making the final strike and basking in the glory of the goal scored. These steps, I argued, are as, if not more significant than the ultimate goal, and the importance of successful passes, shots on target and tackles completed are now being measured by sports statisticians. Players are now ranked not just for the number of goals they score but also for the "goal assists" they provide. 

This gave me a neat way of describing the small hills and big mountains scaled during post-stroke recovery. But that would be taking the mixed metaphor to new extremes.

That pesky right handed thing

When brain injury disables your subdominant side, you have a decision to make. Allow you dominant side to dominate, or buy in to bilateralism? By Billy Mann

This post coincides roughly with the follow-up consultancy appointment at Dr N Ward's Upper Limb clinic at NHNN in Queen Square. In the time since finishing the 3-week intensive Upper Limb Bootcamp in January I have noticed that one problem with turning routines into habits is that the process is made easier if they can be absorbed into existing procedures. I can add shoulder-blade strengthening exercises to my existing gym routine. Ditto ball bouncing while walking. But other routines, especially the ones that targeted the use of my left hand such as carrying water glasses, eating and typing are hindered by the fact that I am right handed and my dominant side naturally will always prevail over the subdominant left side. This means that special measures need to operate if I am to cultivate a more balanced use of both limbs. I have to choose deliberately to drink one cup of tea per day left-handed, or to set aside time for typing exercises. This makes habit forming a lot more difficult and noticeable improvements a lot slower. 

Still, as I discovered just this morning while emptying the dishwasher with my left hand only, just after repositioning the kettle to preclude the overuse of my right hand, it is worth the effort. I only have to look at my improved typing (both hands and many fingers now) to know that. Another thing I have just noticed is that I can make progress in tea drinking by grasping the cup with my left hand rather than trying to fine motor it using two fingers and the handle, upon which my hand begins to shake, with potentially dire consequences.

It's the psychology, stupid

A revealing moment on the treadmill forced Billy Mann to ask whether real progress in post-stroke rehabilitation can ever be felt while you are actually in the process of doing it?

When I pitched up at the NHNN rehab unit back in January of this year for an Upper Limb Bootcamp, I was quickly placed in the charge of the archetypal therapy tag-team of physio and OT. When I had been there two years earlier immediately following my stroke and emergency surgery, a psychologist and a social worker were also part of the squad. This time, the absence of a social worker was not a surprise, but I did think a psychologist's input might be useful. I guessed that in the consultancy process it was decided that I had little need in that respect, which was reassuring. But since motivation forms such a key part of rehabilitation, psychology surely has a role here. 

It is only now, after some time to reflect, that I believe that one of the strengths of the intensive programme is that the psychology is embedded in the experience of the process. It's, like, existential, innit? Is that laughter I can hear? have I strayed too far into the land of Pretension? Let me outline an example and you can decide. 

On one day, Jo, the physiotherapist in charge of my treatment, was off sick and my session was taken by another physio, Fran, who started by asking me whether or not I could run. I answered quickly: "No." Fran then asked me if I had ever tried. "No, but ..."  I then told her of the time a bus driver failed to stop when I had signalled but was then halted by a nearby set of traffic lights. My anger at the driver's conduct impelled me to pursue the bus in order to offer the driver a piece of my mind. So, I tried to "run" after the bus, but my left leg would not co-operate and I was left stranded and very frustrated on the pavement, waving my walking stick and shouting "tosser". 

Fran laughed politely, but of course she now knew that I had the "desire" or the motivation to run, which from a therapy point of view could prove valuable. She then invited me to step on to the treadmill and started me walking at a slow pace, increasing it gently until I had found the momentum of a brisk walk. She started to crank the speed up, to a point at which she was barking at me "run, run run." I frantically tried to obey, flapping my left leg around. All the time Fran was standing casually to one side of the machine, with her left elbow hovering over the red "emergency stop" button. She eventually slowed the machine to a fast walking pace, which was both more comfortable and I suspect more therapeutically useful. 

As soon as I left the session, I sent an SMS text to my wife boasting "I have just been running."