Sites worth seeing
In my last report I mentioned I’m attracted to all things motivational and uplifting in regards to “MS recovery”. Unarguably this is an insidious illness which, if left unmanaged (for want of a better word), will chug away – stealthily corroding our nerve sheaths and eroding our functionality. Even the relapsing remitting phase will do that, with each relapse doing unseen damage – as was the case for me for many years while undiagnosed. Then we metaphorically wake up one day and find that geriatrics at the shopping mall can outrun us, or the footpath (sidewalk) rises rapidly to meet our outstretched noses. C’est la vie .. it’s still a beautiful world and, believe it or not, we’re very fortunate – any of us – to be alive and pumping gas in and out. MS may not be the best thing to have, but (for most of us) rarely is it the worst. We’re alive, and where there’s life there’s hope .. and we have at our disposal a myriad ways of learning how we can overcome MS.
Obviously I’m in a philosophical mood today. Life has dealt us our cards, and it’s then a matter for us (with the best help we can muster) to decide how to play our hands. And if MS is a reality, it’s how we deal with it that matters – in my view at least. If you’re reading my site today or have read anything I’ve written in the past I suspect you also might agree with that. It’s against such a backdrop that I’d like to highlight today 3 sites which I’ve recently discovered and which I have no doubt will assist you on the sometimes bumpy road to recovery, or inspire you along such travels.
The first is a revised and updated site of Professor George Jelinek who I’ve mentioned previously. George as you know is a medical specialist with MS, who’s a veritable fountainhead of enormously useful and greatly efficacious information for recovery. At that new link George has updated and revised material which earlier appeared on his “Taking Control of MS” website, and taken the valuable web-resource much much further. (Incidentally I feel very fortunate indeed to have contracted MS in the modern era.) This new (”Overcoming MS”) website has additional material, new synergies with other recovery information, and some new and superlatively useful functionalities. I particularly like the Q&A page and the information on it; the ability to download and print out in glossy PDF format what you “can” and “can’t” eat on the Swank/Jelinek diet; and the printable reference pages. I’m also a great fan of podcasts – indeed the Writers’ Almanac and Canadian Broadcasting Commission’s (CBC) “Writers & Co” provide listening pleasure to help me clean the kitchen each night (my task) – and I see that the good professor has now taken to the airwaves with MS-recovery podcasts. Yeehah to that I say!
The other 2 sites I’ve stumbled across are firstly a really interesting site by an anonymous guy in the US who uses the nom-de-keyboard of Man-on-a-MSion. His mission is a worthy one .. and I like his wisdom. I’ve added the site to my favourites, listed to the right here. And lastly I draw your attention to one of the most gutsy and inspirational peace-time marches I’ve read about. This one is by an Australian blogger I know – though we live in different parts of this wide brown land. She has recently completed one of the pilgrimage routes of the Way of Saint James in Spain – hurling her “rollator” (wheeled walking frame) ahead of her. It makes great reading .. see the Wobbly Teetering blog link which I’ve also listed here.
But perhaps start with the new George Jelinek site, and bookmark it as a constant reference point for MS knowledge – my guess is you won’t be sorry.
All the best with your own recovery, KB
John Pageler – vision and hope
If you’ve followed my blog, or have read anything of it, you’ll have picked up by now two things: firstly I read as much as I can on anything containing therapeutic and optimistic keywords such as “recovery”, “overcoming” and “managing” MS; and secondly I very much follow the “diet is good” theory – particularly the Dr Roy Swank diet as modified by those who have come after him.
In regard to both points I’ve found many interesting things in my research. One inspiring story I discovered recently was that of the laudable John Pageler of the US, a now elderly man diagnosed in 1967 with Relapsing Remitting MS. He was fortunate, back then, to be in Portland Oregon, and as such his local neurologist was the now legendary Dr Roy Laver Swank. After a couple of unexplained events John suddenly went blind while driving on the freeway at 70mph. After a scary “roadside assistance” by the highway patrol, which involved waving a white handkerchief blindly out his car window, John was taken to see an optometrist and later Roy Swank. He was told, as was the case at the time (and remains the case for progressive MS), that there were no drugs that could assist him in relation to the progress of his disease – and as a result he began to see Dr Swank not as a nutter-theorist, but as a visionary. John immediately started on the Swank-recommended diet (the “Swank Protocols” as he calls them). Though he became medically retired from the US Air Force, he went into full remission from 1970 to 1990. He had a relapse following hospital food on an unrelated issue, but again returned to full health and mobility. Twenty years after diagnosis, and many years after throwing away his walking cane, John took up playing social tennis. (As you may be aware, those who have the best recoveries on the Swank diet are those who are diagnosed early and start the diet immediately.) In 1988 John had his first MRI scan, which showed that he had so many lesions in his brain that he was told he should be comatose. Instead he was informed he was in full remission. Through his life John passionately researched supplements and the Swank low-saturated-fat diet. He became a US and international icon of MS recovery, and wrote a book about his knowledge and experience. Being the sort of guy that he is (or was, I fear that he might have passed away after his last entry 4 years ago when he was said to be in ill health), John or someone close to him has now made that book, or a draft of it, freely available on the internet … at this site.
John’s story is not only an inspiring and fascinating one in its own right, but it is compelling as a “comparative”. For example he cites a case where he met a guy unprepared to give up his existing diet, and met him again years later when he was in a wheelchair and John was unaffected – and how, after changing his diet that guy too had a similar recovery. The book is not a hallelujah-believe-and-you’ll-be-cured book, but a no nonsense, blunt but uplifting book … very much worth reading by anyone with MS in my view.
You know my view about diet, and about those who have stood on the giant shoulders of Swank – most notably and recently George Jelinek. This book of John Pageler’s, going back to 1967 and to the absolute bedrock of someone meeting Roy Swank and following his protocols, is also one of the most worthwhile things I have read about MS. I’ve given you the link to the book, above, but I would also encourage you to read the last, or second last, entry by John Pageler on his website. If you are not minded to read the book, please just read this final advice by John Pageler, and pass it on to anyone you know. Here’s the link – it’s sure to help.
Best wishes on your own recovery, KB.
A book for all reasons
In previous posts I have mentioned, here and there, books and people who or which have had a profound impact on me – in general and more specifically since being diagnosed with MS. In a couple of these posts I mentioned that in February 2009, some two months after being diagnosed with MS (which instantly gave me an explanation for events of the previous 16 or 17 years), I attended a live-in 5 day MS residential run at the Gawler Foundation in the natural Australian bushland about and hour and a half’s drive outside Melbourne. That course was facilitated and run by Dr Ian Gawler (the Nelson Mandala of cancer in my opinion) – and by Professor George Jelinek.
Professor Jelinek has recently had a revised and updated version of his book (the book that I read) published by Allen & Unwin … here’s a link to the book.
Apart from having MS, and from having his mother suicide from advanced MS, George is both a practising medical specialist and an academic in a specialist field of medicine. If good can come out of bad (and note, this is a philosophy of mine – it does) George getting MS has been a great benefit to the rest of us. Because of the harrowing nature of his mother’s debilitation and demise – and George’s involvement as the then medical student in the family – when he was diagnosed with MS he was hit with a tsunami of emotions, but rather than being overwhelmed he had the personal drive, AND the professional expertise, to drill down and research all there was to know about MS .. and in the subsequent 12 years he has continued to do so, culminating (for the moment at least) in the book.
To follow George’s book is a major lifestyle change. But it works! It is in my opinion the most superlative book in the world, to date, on MS and how to overcome its effects. I could not recommend it highly enough.
Best wishes, KB
vale Jimmie Heuga
When I was diagnosed with MS after years of wrong diagnoses, I did as I always do with a problem – I gathered as much information as I could and proceeded to sort wheat from chaff. Naturally in this day and age the internet and meta-search engines, particularly Google, threw up a great morass of (potentially) useful information – and many gems. It also enabled me to read about some interesting people who have made a difference in the lives of others with MS. One of them was a guy named Jimmie Heuga of Vail Colorado, a famous skier and the son of a Basque* immigrant to the USA.
I found Jimmie Heuga inspirational in several ways. The first was simply that he was a fine athlete – being the first American to win a medal at a Winter Olympics (that was in 1964, along with his friend Billy Kidd who won the silver at the time. Jimmie incidentally won the bronze). Secondly and, importantly, he continued to compete after being diagnosed with relapsing remitting MS in 1970. The third thing I found inspirational about Jimmie Heuga was that in 1984 he set up the (then) eponymous Jimmie Heuga MS Center – now the Can Do MS Center – which from its outset advocated healthy lifestyle choices such as diet and exercise, and promoted the benefits of a healthy mindset. Jimmie’s purpose was to enable people with MS to live their lives fully, passionately and indeed with a sense of fun (in that regard I see similarities to the Gawler Foundation in Australia, though the latter goes further with meditation). And fourthly in setting up the “centre” (as I would spell it) Jimmie Heuga deliberately sought to “challenge medical opinions at the time on how to treat the disease”. While – no disrespect intended – there’s not a great deal that conventional medicine can do now for MS, medicine offered far less in 1984.
Jimmie Heuga died last week, aged 64, just as the Winter Olympics were about to begin again. My enquiries with a journalist lead me to believe he died of complications from MS, but I’m otherwise unable to verify that. The MS community around the world lost, by all accounts, a noble man and a progressive thinker. I’ll mark the occasion with a poem by D H Lawrence, the famous English novelist not generally known for his poetry. From what I’ve read about Jimmie Heuga I have a hunch he’d agree with the sentiment. Best wishes, to you the reader – and vale (goodbye) the man from Vail (Colorado).
Self-Pity
I never saw a wild thing
sorry for itself.
A small bird will drop frozen dead from a bough
without ever having felt sorry for itself.
D H Lawrence
ps: Incidentally I’m fascinated by the Basques*. Their language, like that of the ancient Etruscans, is unique and unrelated to any of the world’s four main language families – having “no demonstrable kinship with any other speech on earth” (Simeon Potter, 1960) – and accordingly it’s a mystery from where exactly the Basques came. Furthermore it’s generally accepted that the Basques played an important role in the cod trade and were fishing off North America long before the time of Columbus – see eg author Mark Kurlansky’s excellent book Cod: A Biography of the Fish That Changed the World … but I digress of course. 
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.