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Abraham Lincoln said, "If you want me to talk for 10 minutes give me a month's notice, if you want me to talk for half an hour give me a week's notice.  If you want me to talk all day - well, here I am!"

When I was invited to talk for 15 or 20 minutes I knew I was in trouble.  To explain something that has consumed my entire life for over a decade into a twenty-minute speech is nearly impossible - but I'll do what I can...

I read that in 1899, the US commissioner of patents declared "Everything that can be invented has been invented." In the 1950’s, Variety magazine announced that Rock and Roll, would be "gone by June" and Thomas Watson, Chairman of IBM back in 1943 really blew it by predicting there was "a world market for about five computers." Whoops...

But the expert who really got it wrong was General John Sedgewick during the battle of Spotsylvania. He looked to his officers and assured them that "The Confederates couldn't hit an elephant at this dist... aaargh!"

An expert once told me I would probably be dead in two years: that was over ten years ago.

But it's unreasonable to expect all the experts to have all the right answers all of the time.  I believe we should take some of the burden of directing the outcome of certain things upon ourselves, especially our personal health and wellbeing... but I'll need to supply some background information to establish the relevance of what I am about to propose.

Although, for convenience, I'll refer to my own experiences, they reflect the experiences of a vast number of MND patients around the world. Hundreds have contacted me to say "Exactly the same thing happened to me”- in Guatemala or Greece, or Iceland or Israel. The same things seem to be happening all over the world.

Many years ago I severely injured my head and spine so I gained some experience of chronic, disabling illness and how to cope with it. So, after my original reactions to being told I probably had MND - disbelief, mad panic, depression, mood swings and so on - my fundamental nature and past experience demanded that I do something.  

Some people get the bad news and just crash and burn, and I can hardly blame them, but my reaction was to read all available literature and contact doctors and researchers here around the world. Often I waited months for a brief reply referring me on to somebody else.  For all my frantic efforts all the information I could find on MND was dry, brittle, hopeless, depressing, terrifying and, for me, unspeakably frustrating.

I felt my life was ticking away - within a few months after diagnosis I was living my life in "dog years." Every day was like a week and every month felt like a year - what I needed was instant information and the newest and most instant source of information at that time, and even more so now, was the Internet.  Guess what I found there? 

Firstly, very little on MND and secondly what I did find was exactly the same dry, brittle, hopeless, depressing, terrifying and frustrating information I had seen before.  So, I began my quest: I became "Sir Limpalot" of the round table and set off to gather any positive information I could find.  There was hardly any to be had at the time, so I made do with what I could get.

I discovered that motor neurones were apparently oxidising and dying in MND so it seemed logical that slowing this process with antioxidants might be possible. I suggested this to various "experts" and was ridiculed or simply dismissed.  But the truth was, nobody had really tried to use antioxidants to treat MND.  

I researched antioxidants and attempted to design a formal clinical study, not my area of expertise but something nobody else was doing at the time.  After months of work designing this study I was told, in effect, that because it hadn't been done before I couldn't do it and if it were worth doing "qualified experts" would have done it already.  My original clinical study using 20 volunteers had to be abandoned because of negativity and even veiled threats from the very people I thought would be most supportive. So I became my own lab rat.

By now I had a pretty good idea of the rate of progression of my illness and the way in which it manifested in my case - I've found it can vary markedly from person to person.  I started to use combinations of antioxidants, herbs and other supplements and prescribed medications on myself to gauge the effects.

When I started the study I was confined to the house, needed a wheelchair to travel outside the house and was stubbornly dragging myself from one piece of furniture to another to get across a room.  After a year following a regimen of my own design I was walking over a kilometre every day and able to return my wheelchair, with thanks, to the MND Association.

It was a difficult first year.  I reacted badly to some of the supplements and medications. Some made me quite ill, or made my symptoms worse.  Sometimes even a small variation in dosage could produce alarming and frightening results, but the whole time I was learning.  Gradually I started to receive feedback from others who had chosen to follow my lead and pieces of a vast and complex jigsaw puzzle stared falling into place. 

I now know of many people around the world who have done as I have and, I'm sure, there are even more who are succeeding to some extent by taking a similar approach. (I'll have to refer you to my Internet website if you need more detailed information and can give you the website address later if you're interested).

The website, I'm proud to say, has won international awards of excellence as an educational resource.  It's been translated into German, Spanish and Romanian; portions of it appear in several books; it is linked to most major MND and neurological websites and is generally accepted worldwide as a useful resource if you have questions about MND.

Some of my detractors of years ago now "routinely prescribe" antioxidants and other supplements as an interim measure to treat MND until a cure can be found. For some my regimen helps a little, others like myself have stabilised or improved while most continue to decline whatever they try to do. I make no outlandish claims. I'm just attempting to do the best I can with whatever comes to hand or mind.

Conventional medicine is excellent for dealing with acute, intense, traumatic problems but often doesn't seem to allow for the "follow through" needed for the management of chronic, degenerative illnesses. Some medical specialists, focussed on the disease rather than the individual, can overlook the tremendous impact a patient's state of mind will have on the progress of an illness.

I do not understand this because science has repeatedly demonstrated that a person's state of mind most definitely influences their state of health - otherwise there couldn't possibly be justification for placebo testing on terminally ill volunteers. 

After the tens of thousands of double-blind placebo trials conducted throughout the world it should be possible by now to calculate and exclude the 22% -30% of variance generally accepted as a potential placebo reaction.  Science knows that people have recovered from major illnesses if they believe that pharmaceuticals have been used to heal them.

Even placebo surgery has been tried - and it works! Given what they believe to be a powerful new analgesic, some volunteers cease to feel pain even though they have only taken sugar capsules. The body responds in incredible ways to the belief that healing is both possible and imminent.

Stress measurably affects the progress of illnesses. A protective biological defence mechanism is activated the moment shocking information, pain or fear are registered. As humans evolved, this helped us escape or fight off predatory animals, but modern stress comes in many forms.

In my case I suffered the stress of chronic pain and the side effects powerful analgesic medication; inability to work and the consequent lack of money; frustration at being unable to accomplish things that were once easy for me to achieve, reduced mobility, socialisation and so on.

The problem with a complex situation such as chronic stress is that we cannot easily fight it or run from it. As a result a second innate mechanism, "countershock", alters body chemistry to help us withstand failure to escape attack. Cortisol is increased to reduce our inflammatory response to injury, growth hormone to repair damage to bones and tissues and anticoagulant to stop us bleeding to death. 

These hormones may once have helped us to survive attack from predators but surviving long-term stress eventually causes our bodies to deteriorate as our immune system fails to cope. Some researchers, including myself, are starting to think that MND may be a type of autoimmune illness. For what it's worth, I believe that a cure for MND may evolve from research into autoimmune diseases and that the causal element will be shown to inhibit the metabolisation and uptake of micronutrients essential to nerve function.

MND and stress usually go hand in hand. This being the case, and knowing how damaging stress can be to a healthy body, it is essential that stress be minimised and managed. This can be achieved through relaxation, meditation, prayer, yoga, tai-chi, positive affirmations, massages, controlled breathing, long bubble baths, psychological therapy, socialising, sitting in a garden or just occasionally screaming at a wall.

The technique or combination that best suits a person's personality and physical condition is the one to use. The options are numerous, so be selective and creative.

The important thing is that stress be acknowledged and managed or it will damage health as certainly as MND damages motor neurones. There are books, tapes, videos and courses (usually based on the same, few fundamental principles) to supply information on stress management. I can't possibly discuss them today but would strongly suggest that people with MND and their families and carers seek them out.

"False Hope" is an oxymoron I would like to explore. Hope and faith are, by definition, a response to the unknown or unprovable. All hope and faith, by this definition, is therefore "false." I believe hope and faith are never "false" or damaging.  They may ultimately prove unfounded or may need to be modified, but their value has little to do with being right or wrong and everything to do with coping, reducing stress or providing motivation.

I acknowledge that the dividing line between hope and faith can be a fine one but isn't it reasonable to hope for a cure, expect and look forward to a cure, work towards a cure? I have no doubt that cures will be found for MND and a host of other chronic illnesses in the near future. It's just a matter of time. Even cold logic can accommodate that possibility - no faith required.

Within weeks of my diagnosis I could recite verbatim what could not be done for MND - and that had got us nowhere for over a century - so what can be done to treat chronic illnesses? This is where things get sticky.  If conventional medicine can offer nothing then one is left with unconventional - so called "alternative"- medicine.

But what is alternative about achieving and maintaining a state of wellbeing and good health? That's not alternative to the goal of conventional medicine, particularly as the conventional offers very little in the way of treatment at present. Rather than shibboleth "alternative medicine", I prefer the term "integrative medicine" coined by Dr Andrew Weil.  He has published books, made broadcasts and videos and has an Internet website www.drweil.com that I would commend to you.

Integrative medicine would sensibly suggest that if one has an acute infection, an antibiotic is the most appropriate thing to take, but for chronic illnesses we should be aiming to return the entire human organism to a state of balance. Healing takes place on many levels.  At the molecular level, far below that of any immune system response, enzymes interact with the DNA in every cell (including motor neurones) to repair physical damage at this most fundamental level. Our bodies are constantly attempting to be healthy.

Simple, common sense things can often help reduce the metabolic imbalance we recognise as “illness”. For example, with a little research it is not hard to discover that most of us do not drink nearly enough water.  Usually, our bodies have to grab whatever water is left over from the coffee, tea, beer or soft drinks most people use to re-hydrate.  There's nothing magic or weird or “new-age” about drinking water yet it's absolutely critical for adequate liver and kidney function.

The liver, kidneys and skin carry away toxins, including the free radicals that can oxidise motor neurones. Poor diet can overtax these organs.  There's nothing supernatural or alternative about adopting a sensible diet (although I think supernatural assistance would be handy in helping to define what a sensible diet actually is.  None of the experts seem to agree). It is easiest to stick to simple principles: fresh, uncontaminated food, nothing in excess and a reasonable balance of nutrients plus good food hygiene.

Supplementary medicines are poorly understood, which doesn't surprise me. I'll whoosh through an example: Vitamin B3 is thought by some researchers to be important for a healthy Central Nervous System. A B3 deficiency can lead to pellagra, which can be symptomatically similar to MND. Logically, one should therefore take a vitamin B3 supplement. 

The problem is, you can stuff yourself with supplementary B3 all day but unless you have sufficient levels of zinc, vitamin C, magnesium, manganese, vitamins B6 and B12 and probably other things, you simply can't metabolise enough B3 to be of significant therapeutic value.  The selection of appropriate supplements can therefore be extremely complex.

The one ingredient most often overlooked, or at least grossly underestimated, is the effect of a patient's mental attitude on the process of both healing and maintaining good health. We know stress is bad, so how do we counter that?  We've all heard stories of the survivor-against-all-odds with an incredible will to live. We all have an innate will to live but in some people this will seems to be stronger.  Why?

Usually that individual has a powerful reason to live.  Family, loved ones, career, an unfulfilled dream - whatever.  Perhaps they view life's traumas as a challenge and that supplies sufficient motivation? It's only when hope, or faith fades that the will to survive also begins to wane. Simply put, a positive, hopeful outlook can quite literally be life sustaining.

Although it's sensible to be organised and prepared for the worst in life, I believe it is equally important to allow for the best. Some people do survive MND and other so called terminal illnesses and this information should always be offered as a possibility at the time of diagnosis. With MND, nothing is carved in stone.  To this day there is no technique for accurately diagnosing MND - it's still a case of excluding other illnesses and assessing what's left over.

There are illnesses and neurological stressors that can mimic the early stages of MND.  It is now becoming more widely accepted that there may be different forms of MND.  I was diagnosed with an "atypical" form of MND but have since discovered that a significant percentage of people with MND were also diagnosed as "atypical".  You'd think that if enough people are diagnosed as atypical then, at some point, this “atypicality” must become typical. Ergo: a distinct form of the illness.

In my experience, many of the people in this atypical category seem to be benefiting, to some extent, from lifestyle and dietary changes in addition to the use of a combination of supplementary medications. Sometimes, "conventional" forms of MND seem to be influenced by these regimens.

People rarely die from MND as such but rather from other medical complications and opportunistic infections. Some death certificates do not even mention MND. So, whilst there is no cure for MND, there are most certainly ways to manage the complicating factors that can lead to death when nerve and muscle function are depleted.  A further benefit is that, while we wait for a cure, integrative medicine can help to keep us healthy and possibly even alive for long enough to benefit from that cure when it becomes available.

Early on, I chose to believe that a cure was both possible and imminent. Had I died by my predicted use-by date I would have been proven wrong, but here I am with the same belief and expectations that I had soon after diagnosis.  But how do we foster this positive attitude in those not naturally inclined to optimism? You can't force it down their throats but you can teach by example (the only way to teach in my opinion). 

Starting with diagnosis we need to be told not only the worst that can happen but also about the exceptions to the rule.  There are exceptions in all things. MND itself provides a graphic lesson - it's the body that gets sick - not the mind! Our minds always remain our only reliable tool. When we can no longer exercise our bodies we can exercise and apply our minds, moods, emotions and attitudes to the task of healing.

A priest once jokingly said to me, "The Lord said it came to pass, there was no mention about it being here to stay." But how many times in one day do we reaffirm the permanence of our illnesses?  I've never "owned" MND.  I'll say I was "diagnosed with" MND or a "neurological disorder".

Whenever I used to panic or obsess about the illness, or start to doubt my resolve and ability to be well, I reaffirmed and nourished the thing I feared most. I am not advocating that we enter into a state of denial. After all, one can hardly deny that muscles are wasting but what is to stop us acknowledging that "The process that got me to here has already happened: this is a new day. My future has yet to arrive and all things are possible - even a cure"?

We are constantly presented with choices. You can be happy or sad - your choice. If I believed people or circumstance were able to dictate whether I would be happy or sad then I would have given in long before now.  Each day I wake and decide, "Today can be a good day or a bad day - my choice. I can feel sorry for myself or I can take charge and do what I can with what I've got - my choice." And so on and so on throughout the day. 

Another technique I use, if I fall into a mental black hole, is to assess the previous ten minutes of my life and resolve to do better in the next ten minutes.  Almost everyone can handle life ten minutes at a time. Assessing and correcting mood, attitude and outlook can fine-tune your mind and your approach to the whole day - and life in general. After two or three repetitions I can usually turn my day around, or at very least improve my mood.

The molecules in my body strive to remain healthy; my immune system strives to keep me healthy; medical practitioners strive to keep me healthy, as do my wife, family and friends. I would suggest that the person most responsible for my health and wellbeing is “me” and that I have a most powerful tool to fulfil that responsibility to myself.  That tool is my mind and, given the circumstances, I would be a fool not to use it.

Thank you.

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Random Excerpts From Other Speeches

I'm a bit excessive really but as an example of how this approach can work for you: I recently woke up feeling decidedly sorry for myself. In a fit of pique I decided, "If I'm going to feel this lousy I'm going to do something to deserve it!"

Consequently, I started work on a large painting, something I hadn't attempted in years because of the predictably dire physical consequences. Well, by the end of the day my body was really complaining - but I had virtually finished the painting that is now hanging on a wall at home.

There have been times since when it has been physically impossible for me to paint but this defiant "poke in the eye" for my illness lifted my spirits for a week and I'm still constantly reminded of my minor triumph whenever I look at the painting. 

These "minor triumphs" are incredibly important as an aid to managing chronic illness and, however insignificant they may seem, opportunities to identify and achieve them should be acted on as often as possible. So much is taken away as MND progresses that it's important to "get your own back" whenever you can.

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An Examples of Stress:

The way in which I was informed that I possibly had MND: "You've got (this illness) and probably have two years to live. Any questions?" was needlessly stressful.  The blow was later softened by more experienced doctors that had NOT missed the lecture on how to develop a good bedside manner.  But much of the damage had already been done. 

I deteriorated faster in the first few months than I have in the last decade. Only when I started to feel that I was not totally out of control; not totally at the mercy of uncaring or desensitised specialists; not totally dependant on developments in a pharmaceutical industry influenced more by dollars than my particular needs; only then did I start to stabilise and improve.

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I have worked in many places where I was exposed to high levels of toxic chemicals. Just working with animals, I was repeatedly exposed to vast amounts of organophosphates many years prior to diagnosis with ALS/MND.

Some days I was literally drenched with the stuff from head to foot. I can clearly remember the smell. Malathion was the major culprit but mixed with formaldehyde and other nasty stuff, looking back I'm surprised I didn't expire on the spot!

There's little doubt in my mind that exposure to environmental toxins, and organophosphates in particular, is a contributing cause of ALS/MND and other chronic illnesses.

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A major hurdle (PALS) face is that it can take half a billion dollars to get a drug approved by the American FDA, and similar sumsof money are involved in other countries, so we can't realistically rely on drug companies to focus on MND and similar "orphan" illnesses. 

Western medical research is as dependent on short-term profitability as the western corporations that finance most of the research. Low returns for shareholders mean research grant cutbacks, and funding cutbacks impact heavily in areas least likely to generate profit - MND is one of them. Yet many medical practitioners still seem to be happy to wait for pharmaceutical companies to come up with a "magic pill".

MND is most likely to benefit from "spin off" research into more common (thus potentially "profitable") disorders such as Alzheimer's, MS, Parkinson's, etc. Waiting for drug companies to chance upon a cure for MND... well, to me, that would be false hope. 

Once I'd realised this and stopped whingeing to myself that nobody seemed to care about MND, it became obvious that the onus was on me to get well and not on other people to cure me.  While I still thought that a cure was little more than a lottery, my aim was to stay alive at least until the lottery was drawn.  I started to improve when I began to have hope.

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The electrical activity of our thoughts increase significantly in times of emotion and stimulates the amygdala, a tiny mass of tissue deep in the centre of the brain.  This provokes a chain reaction that releases powerful chemicals into the bloodstream.  These include vasopressin to increase blood flow to the muscles, endorphins to block pain, and adrenaline and noradrenaline to mobilise the body's glucose reserves.

Adrenaline also works directly on the brain. It is one of the neurotransmitters that facilitate electrical communication between brain cells.  When levels increase, thoughts become speedier and are more likely to be laid down as permanent (usually unpleasant) memories.

The physical sensations following this moment of arousal include: tachycardia, a fluttery feeling in the abdomen as the blood rushes to the muscles and away from the gut and diarrhoea as the body lightens itself for flight.  All these are transient effects and quite harmless, providing we can actually fight off or flee from the threat and allow our bodies return to normal.

If the level of cortisol - the prime stress hormone - is raised for a long period it undermines the immune system.  People who live under constant stress have been found to reduce levels of NK (natural killer) cells - the blood corpuscles that seek out and destroy bacteria and viruses. 

Lymphocytes, the NK cells' "helpers", are depleted along with immunoglobulin, a protein that acts as an antibody against invaders. These changes make us less able to fight off infections, and more vulnerable to a host of illnesses. All seasonal infections are picked up more easily and there is a greater chance that a virus may "dig in" to the system to produce chronic illness. Stress also exacerbates certain autoimmune diseases.

Rheumatoid arthritis, allergies, eczema and diabetes commonly flare up or appear for the first time after traumatic events. Could this be the case with certain forms of MND?

Molecular biologists seem to be making the most significant steps towards treating chronic and degenerative illnesses at present. I communicate with several on a regular basis and great steps are being made towards an understanding of the mechanics and fundamental aetiology of chronic illnesses.

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I'm an informal member of the growing "Over Five Club" - people coping and surviving five years or more after diagnosis.  A common belief of the over fives is that a cure will be found and that we will still be around and able to benefit from it.  At the time of our collective diagnoses this would have been labelled "false hope".

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Bert Woodard has lived with ALS for over 24 years. Instead of dwelling on dying, Bert has made a point of living. He has written a manual, "Living" With It, Not Dying Of It" for others with ALS or other disabling diseases.

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The word 'Doctor' is derived from the Greek for "teacher". Much could be achieved if more doctors could "teach' patients to maintain good health. But first they would need to learn and acknowledge the relevance of the most appropriate "maintenance" techniques.

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Antioxidants seem to have been dismissed by some mainstream medical practitioners as of no value for treating ALS/MND. With respect to the researchers that concluded this, I have read the abstracts from the majority of this research, conducted in vitro or with mice, and in each case only one antioxidant was tested.

I suggested many years ago that combined antioxidants are required for antioxidant therapy to be of use in treating ALS/MND. In addition to the use of several antioxidants in combination, other supplements or foods are required to adequately metabolise these antioxidants.

Even the most basic understanding of how antioxidants are metabolised would reveal that, for example, vitamin C uptake and metabolisation is significantly improved if ingested in conjunction with citrus and other fruits. The phytonutrients in fruits promote metabolisation of many antioxidants but this process is "poorly understood" in many ALS/MND antioxidant studies, if it is taken into account at all.

I do not question the "scientific" quality of the research into using antioxidants to treat ALS/MND but I do question whether a broad enough study was undertaken before the statement that "Antioxidants have proven ineffective in treating ALS/MND" was published.

From what I have read this was not the case and multi antioxidant research is unlikely to be undertaken due to the reductive and exclusive nature of scientific methodology and protocols. In short, I do not agree with some published results to date – especially as parallel research contradicts this statement.

If a broader, interdisciplinary approach were taken I would be far more inclined to accept the summary dismissal of the otherwise widely studied and well understood topic of antioxidant usage to treat degenerative illnesses.

Empirical evidence and extensive feedback from PALS worldwide who have made positive dietary and lifestyle changes and use a combination of antioxidants and complementary supplements would tend to indicate that some slowing of the oxidation and dysfunction of motor neurones can be achieved.

It has never been claimed that antioxidants will cure or should be used to treat ALS/MND.

In the last decade have not recorded that any PALS has improved by taking only one type of antioxidant - even using mega doses. One of the antioxidants tested was alpha tocopherol (synthetic vitamin E), which some researchers believe may be the least effective of all antioxidants in treating neurodegeneration.

Why should animal studies using isolated antioxidant compounds be effective when it has been clear for over a decade that any observed benefits to PALS have been achieved only after using a combination of supplements?

It has been clear for some time that the viability and general health of cells surrounding motor neurones are very likely to be involved in the neurodegenerative process and may even be the cause of what we know as ALS/MND.

I see little evidence that the effects of antioxidants on these cells or the systems supporting the wellbeing of these cells were sufficiently researched in the studies.

To categorically state that antioxidants have no place in treating ALS/MND is at best flawed and ill informed and at worst purposely misleading.

With that caveat, I would recommend the article "Pathways to Hope" on the state of ALS/MND research as of late 2004 on the ALSA website. This is a good primer for anybody wishing to better understand potential causes and treatments for ALS/MND.

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Many doctors and researchers feel similarly about the ability of our mind and body to heal:

There is a clear and comprehensive explanation of how our thinking directly affects our physiology at the cellular level in The Biology of Belief by Dr. Bruce H. Lipton, Ph.D. There are numerous references from respected medical journals to support the proposition that our minds, moods and environment directly effect our health.

Two more sites that may be of interest are: Healing With Craig and the ALS Mind Body and Psychology Community

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Thinking Yourself Sick
by Lloyd J. Thomas, Ph.D. discusses the influence of thinking on health:

“When healthcare professionals cannot find the causes of your experienced symptoms, they often conclude, "It's all in your head".  It's an easy way for them to hide their ignorance and invite you to feel guilty or stupid.  But that conclusion might prove be more accurate than we ever imagined.

Brain researchers have found chemical and physical evidence supporting the notion that the mind and body function as a unity.  What happens in your mind, your mental activity, is inevitably reflected in your body... and vice versa.  This means you can actually think yourself into becoming physically ill.

When we cling to negative thoughts and intense emotions, we prompt the body to produce and release "messenger molecules" and "stress hormones."  These molecules spread throughout the body sending negative news to every organ and system.  Our bodies respond accordingly.

The negative thoughts you think actually become adrenaline, noradrenaline, cortisone, ACTH, and other chemical substances that alter the delicate biochemical balance and can weaken the immune system.  When your immune system is disrupted, you become susceptible to all kinds of diseases that you would ordinarily "shrug off." 

When we dwell on angry thoughts, anticipated fearsome events, frustrations, bitterness, embarrassment, hopelessness, discouragement, and other negative attitudes, we release into our bodies the chemical causes of some diseases.” 

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Dr. Roy Walford, Professor of Pathology at UCLA School of Medicine, claims that all diseases, whether we label them the flu, asthma, cancer, arthritis, osteoporosis, diabetes, heart disease or AIDS - all diseases are actually artificial labels given to various sets of symptoms.

He concludes, "All diseases are nothing but drug-induced, progressive toxemia (or poison), either endogenous (internally generated) or exogenous  (externally generated)… We are used to thinking that disease is always a result of being attacked by something outside our bodies.  Now we know our thinking habits can be equally responsible for the creation of illness.”

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