The Last Word

This is the final posting in the NeuroBilly blog. I am merging it with the ScrapbookBilly blog because neuro therapy has become part of my everyday life, so to single it out no longer seems sensible.

I want to finish by outlining two aspects of therapy I have come to use and trust. First is EASY REPETITION, and second is BODY AWARENESS.

From the outset, repetition is a mainstay of neurorehabilitation: sit-to-stand, GRASP, both drill the message home. Do it, do it again, do it forwards, do it backwards, don't stop, stopping is for cowards. Now let's try that one more time. It's relentless. And it works.

Taking the repetition regimes home when you leave hospital puts you in a spot. Many carry on, with various exercises tailored to their own needs. But to make it stick for the long term, you need to find a routine you can live with. Many soon get bored because, hey, it's, like, a bit repetitive...

My own method is to work out what works for me. Shoelaces were impossible to begin with, got to be frustrating after about 2 years, then settled somewhere between irritating and annoying. But I never once thought of giving up on them, selling out and stepping into slip-ons. Now, after five years, they are still a nuisance, but an easily tolerated nuisance. The same is true for washing my hair in the shower. At first it was dangerous, now it is a 'bilateral 'pleasure.

So the trick for me was to find fun, or at least a curious interest in the things I knew I'd need to do for the rest of my life. That way I will not only continue the repetition but find enjoyment from doing it. I have become really quite good at emptying the washing machine with my left hand.

Body Awareness for me came mainly from the repetitive exercises I do in the gym: discovering that a session on the recumbent bike to strengthen my legs was also a chance to poke my shoulder blades into the back of the seat. This exercises your subscapular muscles, I'm told..

Once discovered, these moments of comfortable compatibility with therapy, when doing beneficial exercises doesn't actually seem like exercising at all, can take some getting used to. Walking with a tight core, pelvis sticking out front, can feel self-consciously strange. The word 'mincing' springs to mind.

But once you know how to spot the signs, the invitation to better understand your body and its movement can be genuinely revealing. Not long ago I was getting some balance therapy at London's National Hospital for Neurology and Neurosurgery (NHNN). I did something called 'Tandem Walking', which involves walking heel-to-toe in a straight line. It was tough for me, until I tried it at home, whereupon I started to cheat by using my walking stick lightly to stop me tippling over. I confessed this at my next therapy session and Hannah, the physio, staightaway drilled me in 'Tandem Walking With A Stick'. This, I now understand, will one day result in 'Tandem Walking Without A Stick', but for the time being I am enjoying my 'Tandem Walking'. One cheeky young member of our family calls it my 'Supermodel Catwalk'. I transferred the routine to the treadmill in the gym and a once-boring exercise machine is now my personal dancefloor.

So it is goodbye to Neuro Billy and welcome Scrapbook Billy, where my neuro activities will sit side by side with everything else I do: writing a diary, drawing and painting, travel, teaching, and anything else that comes along. I see this moment as some sort of progress, which I suppose is how it's meant to be.

Headway: Ski Therapy

My instinct was to say no when invited to go on a skiing trip to Hemel Hempstead. It is now five years since my stroke and I have long since accepted that activities that depend on good balance are out of my league.

The trip was with Headway East London, where I've been a member for around four years. Yes, I declined, but then had second thoughts. First, I didn't like the idea of ruling out any activity that I might still be able to enjoy. Second, I had never been skiing and this was probably the best opportunity to break my duck safely, since I would be surrounded by experts who could save me if I got into trouble.

So it was off to Hemel Hempstead Snow Centre, to be kitted out in all the gear and released on to, in my case, a slope so slight that hardly warranted the name. It might have been but a marginal incline of around 0.05° but it did its best to keep me at the bottom. Eventually, by adopting a gentle swaying motion to transfer my weight, I was able slowly to step sideways with my stronger right leg the haul my weaker left leg after it. It didn't look pretty, but it got me about 3m upslope, from where I could then begin my elegant descent.

This is when the déjà vu descended. As I slid gently down that meagre slope, crouched forward as instructed, the overwhelming, uncontrollable urge to stand erect got the better of me. In doing this the skis do what they are supposed to do and pull the rug from under your feet. You tipple backwards, saved only by a last-ditch, desperate forward-wheeling of your arms to propel yourself back to a balanced position.

The experience took me back to the early stages of stroke recovery when I was learning the classic 'sit-to-stand'. In this case, the irresistible motion is forward rather than backward. As you attempt to stand from a sitting position, you feel yourself pitching dangerously forward, straight into a nosedive to the floor. Only a slow, purposeful rebuilding of your body confidence over time allows you to throw your weight forward and flex your legs to a standing position. At that moment on the ski slope in Hemel Hempstead, I could not imagine any time in the future when I had would have the confidence to hold my position without fear.

But because I know what I know from past experience, skiing IS something I might one day be capable of. The real question is whether I want to.

Headway: ITU nursing

One day, maybe..

Part of Headway East London’s mission is to assist healthcare professionals in the training of their staff. Getting up close to survivors of brain injury, talking one-to-one, watching and listening is not something academic or technical training can easily offer. Nurses and therapists benefit greatly from the experience in many different ways, and as HEL day-service members we are happy to help.

Yesterday in a lecture theatre at the National Hospital for Neurology and Neurosurgery, we met ITU nurses studying at London South Bank University (LSBU): sixteen students and four HEL members. We sat in four groups of four, each for 20 minutes. We told them about our experience and answered their questions as best we can. It wasn’t easy because very few of us remember much of what happened in ITU. Most of us were unconscious and totally unaware of the nursing we got. What could we tell them? Not much.

But in some way that was OK. ITU nurses very rarely see the outcome of their work, so just to sit and chat and find out how life panned out for us after our brain injuries is enough. Several of the students raised this. Some even said they found it frustrating that they were never able to see what their work resulted in.

On this I tried to offer some crumbs of reassurance with examples from my own experience, of one nurse in particular who had somehow detected a spark of motivation in me and decided to kindle it into a bonfire. She tested my reactions endlessly and started some rudimentary exercises (finger drumming, mostly).

In this way, a habit was started almost in the moment after surgery. Four and a half years later and I still tap out tunes on the table top with my left hand. And it has advanced to learning simple piano chords with Izzy, the music co-ordinator at Headway East London. She wants me to master Wonderwall, but I never was much of an Oasis fan.

Diary: Bridges in a Group 2

Different strokes

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

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

Headway: OT Students' Society, LSBU

Meet the ones who do

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

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.

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.

Diary: Stroke World Café

Take a talk on the wild side

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.

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'.

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.

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.

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 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.

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.

Diary: 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.

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.

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.