Books & me – an intro
It seems to me that to ponder the books one likes is a form of intimate personal introspection – a variant of “the eyes being the windows to the soul”. So I’ll try to not be too introspective, and will stick to books with an MS focus. I’ll give enough away however to say that the first book which really hit me was James A Michener’s “The Drifters” and its immediate effect, on my fertile 17yo brain, was to embrace the life-road ahead which then dauntingly faced me, including the prospect of leaving my hometown to go out into the world alone. If I may continue to digress, this was at a time I was absent from my last few weeks of boarding school with a double-whammy of glandular fever and viral meningitis (something which indeed might be relevant to the upload of MS years later – a theory I might develop further at some stage).
Fast-forward 3 decades and I’ve found myself diagnosed with multiple sclerosis. I “research” – that’s something, inter alia, I like to think I’m good at – so I embarked on using every available resource (particularly the internet, libraries, and anecdotal discussions) to find books most likely for me to debunk or dent any notion that this condition is either “incurable” (optimistically) or is “downwardly progressive” (realistically, in my view – in that I can and do believe I can stop this feature of my personal variant of MS). Indexes and footnotes in books in the libraries and in books I bought – and I bought and read many – led to other books and leads, as did innumerable searches of the internet. I view any good research as a pyramid, and the base is always prosaically just a foundation with much ultimately destined to play no further useful role in the collection of wisdom. In that regard I found far too many books were only descriptive telling me what MS was, and others had too great a medical focus. As I learned more I came to the opinion (or “knowledge” if you’ll forgive that arrogant assessment) that the drugs were overrated – that, well-meaning or not, the pharmaceutical approach could at best provide me with only a handbrake to slow the runaway car … leaving 70% (at the very least!) of how I would handle MS something left solely up to me.
It was that issue that then came into focus for me – ie how would I, this little black duck, learn and deal with something that might otherwise deleteriously affect my life, physically and perhaps even mentally.
Yet I’ve gone too far into the mental element already today … this conversation is about books!! … so forgive me, I’ll come back to the mental equation at a later date. Suffice to say that after reading many many books which imparted little useful information beyond describing what I could learn directly from my neurologist, I began to see a genre of books that offered hope and a pattern for stopping or reversing any downward slide. The first of these I stumbled upon was the UK’s Judy Graham’s “Multiple Sclerosis: A Self-Help Guide to Its Management” … and the next was the equally excellent USA published “The MS Recovery Diet” by Ann Sawyer and Judith Bachrach.
But, with no disrespect to those wonderful books, another gem I found – which I recall happened when I was following a lead on Roger Swank – was a book by a Western Australian medical specialist, Professor George Jelinek. It was at the time titled “Taking Control of Multiple Sclerosis” but is now released in an expanded, updated, version under the title “Overcoming Multiple Sclerosis”. It was, along the lines of Ms Graham’s “management” and Ms Sawyer/Bachrach’s “recovery” book, a book fundamentally intended to provide hope based on fact … and, like those books, it achieves exactly that. I would encourage anyone, anywhere with MS, to read that book in particular. Here is a youtube video of George Jelinek discussing the revised version of that book.
I’ll wind up today’s jottings with a recommendation of good book from left field. It’s not about MS and is called “Learning to Fall – the blessings of an imperfect life” by Philip Simmonds, a college English professor in the US. The author writes about his Motor Neurone Disease (Amyotrophic lateral sclerosis ALS, or Lou Gehrig’s disease), something which humbles me. But it’s not a book at its heart about disease, even though disease is in the background. In essence it’s a book about life (with an occasional poem chucked in … a bonus for me). It starts with the proposition that we’ve all lived long enough to know that life is, at once, both more-than and less-than what we bargained for. Serendipitously the universe gave me this book – my wife saw the “learning to fall” title and thought of me. I’d recommend the book, as (believe me) it’s not hard to warm to the author and his wisdom.
Time defeats me, and I’ll come back to a discussion of books at a later stage. In the meantime enjoy your health – its ingredients in my view for MS are diet, exercise and attitude. Best wishes, KB
Walking (and other luxuries) – Part 2
Today I wanted to continue comment on walking-as-therapy for recovery. Previously I wrote that I have commenced a program of walking most days of the week, using Austrian hiking poles (sometimes called Nordic poles or more generically trekking poles). These are essentially ultra-light ski poles. I imagine that, like bicycles, the more you pay the lighter they are … and if you’re walking any distance or, like me, walking isn’t easy – then the lighter the better. We’re lucky in my part of the world that the sun is now shining (a bit too much on most days, which is why I walk in the late afternoons) and my poles allow me to go for longish (by my standards) walks – raising a sweat with our appreciative dogs. There are also a number of developments happening around the world into the building of muscle mass and the rewiring of the MS-lesioned-brain to overcome the effects of myelin breakdown. I’ll cover a few here today.
Firstly and fundamentally I reiterate that I follow the concept of neuroplasticity, which has gained traction in recent years to show the brain is able to make new neural pathways to overcome those that are blocked or damaged – and in that regard a recently published book I’d recommend is The Brain That Changes Itself by Norman Doidge MD. I also admire the inspirational exercise efforts of people such as Michael Forbes, Lena, Rebecca Hoover and Dr Terry Wahls.
Many other developments are occurring. For instance I see the prestigious McGill University in Canada has a Clinical Trial about to begin on the effectiveness of an “MS tailored exercise program” (MSTEP) in enhancing walking endurance. In the USA the organisation “Project Walk” which usually deals with those affected by severe spinal injuries has a Gait Training Center for Excellence the stated objective of which is to provide advanced functional gait training for people who are moving their legs or are able to walk with or without adaptive aids. In Israel glasses (that look like groovy sunglasses) have been developed to help MS people walk more effectively. They work by virtual reality, putting a black and white grid into the field of vision of the wearer, improving gait as the brain locates and places the feet in the most advantageous position for walking. With continued use the technology allegedly improves walking performance even after the glasses are taken off. On a worthwhile MS blog site called Jeff’s blog I recall reading (but can no longer find) his comment on an electrical orthotic product called Walk-Aide which provides electrical stimulation to the calf muscle on walking, thereby reputedly overcoming foot drop. A story on this particular commercial product – which incidentally was created at Canada’s University of Alberta in Edmonton – aired on a (US) ABC television program in 2008. It is AA battery-operated device about the size of an IPod. It won the US 2007 da Vinci Award, and is said to regenerate communication between the brain and body.
On a much more prosaic note, a UK invention – the MuSmart, the homemade invention of an irrepressible geo-physicist inventor – featured on a BBC-tv program as being an effective, but in this case totally mechanical, means of overcoming footdrop. The device consists of a shoulder harness and an elastic bungee cord which is connected the wearer’s shoe, and the inventor is on record as hoping it will help people with MS and other similar neurological conditions.
Please note I have no link whatsoever to any of these products and cannot vouch for their effectiveness. I merely list them as an overview of the types of developments and ideas which can or might make walking for people with MS a whole lot easier. As for me I continue to mow the lawn (which at the moment is happening too frequently, in the wet season of the subtropics). We’re on a hill, so that can be challenging – but as I’ve said to friends and professionals, the mower comes with a built-in walking frame, so it’s just a question of energy vis-a-vis MS-fatigue and heat, and sometimes breaking the task over 2 or 3 days. And of course I believe I am getting excellent recuperative benefits from those walks (of about 45 minutes) with my daughter’s 2 dogs, the young corgi and the older “intelligence-challenged” boxer. (My apologies to boxer owners everywhere who might be offended by that last hurtful and accurate comment.) 
Next time – in perhaps 2 weeks – I’m toying with the idea of writing about the links between viruses and MS – or about theories of how attitude can help healing generally – or perhaps about books I’ve read and/or would recommend. Until then, my best wishes on your own MS recovery.
Walking (and other luxuries) – Part 1
Humans are a mobile species – we’re bipeds after all, and most of our ancestors came (willingly or otherwise) at some stage from far distant points on the globe. It seems to me that we tend to take walking for granted unless or until we’re unable to transport ourselves as nature intended. At least that was the case for me until MS threw a spanner in the works. I remember reading a book on fitness only 3 years or so ago (when I was playing tennis and walking home from the city a couple of days a week). It proclaimed unthinkingly – ie unthinkingly of anyone less-abled – that all one had to do was tell your brain what speed you wanted to walk at, and then just tune out – your body would take over. Essentially a “set-and-forget” argument, and you were away. And indeed that’s true for most of the population. With a bit of luck and a lot of work, I can hope that maybe that’ll be the case again for me one day in the future.
I certainly took walking for granted until MS came along and had me acquainting with the floor more often than I wanted. But that’s life. There are objectively a lot worse things that can and do happen to human beings. At the same time I feel there’s a great deal I can do now to improve the (comparatively fortunate) level of mobility that I do have. MS wasn’t on my game plan and I didn’t intend that, in an all too brief period of time, I’d only be able to walk short distances and even then with the help of a walking stick. I’ve cogitated on this and come to see where I’m currently at is a staging-post rather than a new paradigm. From here my mobility is either going to get worse/ or it’s going to get better/ or it’s going to stay the same. Logically they are the only 3 alternatives (short of mortality). Accordingly what am I going to do about it? I know I’m fortunate (and humble) that I’m not in a wheelchair. If I was, and if I felt that getting out of a wheelchair was not “do-able” for me, I guess I might turn my attention even further towards other things – such as what diet (in particular, and what exercise, sunlight etc) I could do to stop or reverse the downward progress of a downwardly-progressive disease. But fortunately I only rely on a walking stick / I am aware there’s nothing wrong with my muscles, and that it’s only the messages that get scrambled/ and I’ve studied enough to know and to fundamentally understand that I have the neural capability of doing something about building new conductive pathways, and to build some better or at least more tuned muscles, to help me get from A to B more effectively.
If ever I doubted I could rebuild walking competence (and confidence) there are many examples which, like the floor itself, can rise up quickly to hit me in the face. These include diet pioneer Roger Macdougall who was bedridden before starting his paleolithic diet and who had virtually no MS symptoms when he died decades later; fibre artist Lena, mentioned in an earlier blog who, using exercise, has been able to improve her walking to the extent of no longer relying on a cane; Norman Doidge’s recent seminal bestseller The Brain That Changes Itself; published research into walking generally; and a truly inspirational example of the benefits of targeted exercise – where Australian journalist Michael Forbes broke his neck in a bicycle accident two years ago and has been relearning to stand and walk ever since.
This “luxury of a walking” blog however has developed into a long one, and for that reason I have decided to split the topic into two parts. Part 2 will follow in the coming week, and in it I will deal with walking aids, devices, techniques and exercises – which build on the (I believe, established) proposition that neuroplasticity and exercise can, and does, allow the muscles (which as we know are unaffected by MS) to rebuild new and functional neural pathways … enabling those of us with impaired gait to walk normally again. I will leave you nevertheless for the moment with one simple – yet, trust me – brilliant innovation for rebuilding walking competence. The good people at my work (hello good people at my work) chipped in and bought for me two Austrian hiking poles … essentially ski poles. With these I am able to walk upright and with what might once have been called a proud bearing (rather than looking at my feet) and, unless MS-fatigued, can motor along quite fast. Unequivocally in doing so I’m actively rewiring my brain and overcoming my right leg’s recent desire to do a figure-8 jig along the way. I HIGHLY recommend such poles (hiking poles or trekking poles), of any reputable brand. Here’s a youtube video or two on their use and benefits. (I notice the first video specifically mentions MS.)
Part 2 will follow asap on aids, devices, techniques and exercises to rebuild the ability to walk.