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: Tai Chi

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 centring 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.

Headway: 300 Club Results

Once more, with feeling

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.

Headway: 300 Club opens

Repeat when necessary

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 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.