Transverse Myelitis and Neural Plasticity

I have just read Oliver Sack’s latest book (‘On the Move’), finishing ironically on the sad day he died a couple of weeks ago (30th August 2015). ‘On the Move’ was a brilliantly engaging autobiography that I could not put down, covering his medical history, his personal life, and the clinical background to all his books (think ‘The Man who Mistook His Wife for a Hat’ and ‘Awakenings’).

I had started reading Norman Doidge’s recent book about 3 months ago (‘The Brain’s Way of Healing’), having gone to a public interview with him in a packed auditorium. As soon as I began, I remembered having struggled several years ago to read his previous one (‘The Brain that Changes Itself’ which in many ways introduced the general public to the idea of ‘neural plasticity’). Doidge’s writing style is not engaging, and he tends to repeat himself frequently, going over and over the stories he tells – perhaps to defend himself against his critics. The problem is that he is saying some very important things in the latest book.

The primary story is that if we lose a part of the brain through whatever cause, it is possible to open up adjacent parts to counteract the loss. The first tedious and repetitive story in ‘Healing’ is that of an inspiring man with Parkinsonism who literally forced himself to walk again, over weeks and months walking further and further and faster and faster. If he slackened off his regular training, then he returned to his classic tentative steps and lost his animation. If he was ill for any reason he got a setback, and had to work hard to recover his progress. The message (as in Sack’s books) is that managing a chronic brain illness may not be best managed solely with medication; the brain needs to be retrained through exercise or listening to music to invoke a need to dance.

So over the last few weeks, Jan and I have been watching the US ‘So you think you can dance’ and marvelling at the athleticism and style, and wishing we could do anything that remotely resembled what happens on stage. We have also been addicted to the Australian ‘Dancing with the Stars’. This is closer to home, given Jan and I met at 14 in Ballroom Dancing Classes. Throughout our lives we have been dancers, taking every opportunity to move to the music. The last time is a painful memory of ‘doing the twist’ energetically and to collegiate applause at a Christmas party of Child Psychiatrists a few weeks before I became ill in December 2009. Watching DWTS, I twitch as if parts of me want to get back on the dance floor. The premise of the program is that a ‘star’ (usually someone of whom I have never heard) having never trained in dance before, is paired with a professional dancer for the weeks of competition. Week by week one of the stars leaves. One of the dancers this year was a young woman who had an above knee amputation with a high-tech prosthesis. She had never danced prior to her accident, and certainly never since. She was understandable tense and anxious, but week by week there was obvious improvement in her capabilities, her enjoyment and confidence, and her courage to try advanced moves. She was brilliant and, if an empathy vote counted for anything, she should have won. I watched gob-smacked at how much she could learn to better control her artificial limb to the point of obvious finesse.

OK, back to my current struggle. I noted in a previous post that I have an iPhone app that measures my daily strides. I questioned whether taking note of the app would have any impact on my walking over time. So here is the result to date. In January, I could not walk more than an average 1084 steps per day. This included two days a week being at work collecting patients from the waiting room etc. There were good days and bad; all very variable. Occasionally (like about once a week) I tried to go on the exercise bike for about 20 minutes, but it was a trial, and I was always exhausted afterwards.

Bit by bit I have pushed myself (the truth is probably that Jan has pushed me to push myself). She will often (on days I am not at work) demand we go for an early evening stroll. This began slowly, and just to the end of our road (about 600 metres return journey), usually with a stick to assist me to control my right foot placement. The frequency of exercise bike has now risen to at least twice a week.

As I have become a bit more confident, it feels like my muscles are a bit stronger and more toned. In fact we found out a precious fact. If I walk half way, and then stop for a rest for 5 minutes, admiring the view, I am refreshed enough to toddle home. I am consciously using this ‘exercise – rest – exercise’ in all that I do.

So what is the result? Over the last erratic and somewhat pressured month, despite struggling to recover from shingles around the head and eyes, I have averaged over 2000 steps a day. Admittedly this includes my more regular two days a week 20-minute exercise bike ride. In the last 6 months, I have gone from an average 1085 steps per day (over the week), to an average 2669 steps per day (over the week). This is the first week I have ever been able to exceed the 2500 average step marker on the phone.  I have to say generally that I am walking more confidently, though there are good and bad days.

I am generally more tired on bike days. I give myself a rest day before a work day. I recently had an odd viral illness over three days, and felt exhausted. I exercised very little for those three days.

I have a fantasy that my referred pain from T5-7 coming round to just below my right nipple, is less troublesome. I have bad days – for instance if I do too much reading or too much writing. Jan has continued to give me a back rub about once a week, and a foot and lower leg rub about twice a week (brilliant kind person that she is).

So, if the brain is plastic, is it possible that the spinal cord is plastic, too? Don’t know. Someone please tell me. I know that there are animal experiments that show an animal can regrow spinal fibres even after a transection; so why should that not be possible in humans?

The spinal cord is an extension of the brain, made up of the same kinds of cells and fibres. Can we teach our spinal cords to re-route signals past a damaged bit? Don’t know. Someone please tell me.

I suspect that regular massage, passive muscle movement, and gradually increasing exercise with physiotherapist or exercise physiotherapist support is far better for us than medications. You may like to check in with your doctor or neurologist.

By the way, in 2009, I had been teaching a karate class the night before I got my Transverse Myelitis. I very bravely wrote an email to friends a couple of days later asking if anyone would like to join me in ‘wheelchair karate’? I have done no karate since. However, three weeks ago I felt confident enough of my stance to do ten repetitions of a range punches and blocks looking at my style in the bathroom mirror. My legs were as steady as rocks, even when I increased the slight twist to increase the force of a punch. I have repeated that about twice a week. It did not make my chest pain any worse. I have a fantasy it may eventually recreate some old pathways in my spinal cord.

Do I want to go on ‘Dancing with the stars”? Not at my age. But I would like to improve my physical status as I age, and avoid being in a wheelchair for as long as my aching bones will allow.

Does anyone know any references to spinal recovery through neural plasticity? Please let me know. If I find anything, I will share it.