Nature's Sunshine Products of Australia Pty. Ltd, are again sponsoring me and supplying high quality Nature's Sunshine supplements to assist me in this sixth year of my study. I would once again like to thank Nature's Sunshine and in particular Mr Stephen Webster and Robyn McInnes . See Nature's Sunshine's website. They can be telephoned on (02) 9894-0111 or faxed on (02) 9894-2422. Their Australian (NSW) address is P.O. Box 6884, Baulkham Hills Business Park, Baulkham Hills NSW 2153. Managing Director: Mr Stephen Webster. E-mail Ms. Robyn McInnes  robyn@nspaust.com.au  to order supplements or for more information about product availability.

The staff at Nature's Sunshine are extremely knowledgeable, helpful and efficient. This study could not have progressed at all without their ongoing encouragement and support. I believe that their kindness and generosity have directly or indirectly assisted PALS around the world. I remain indebted to them and recommend their excellent quality products and service.

Steven Shackel, April 2002

The pattern established over recent years continued throughout year six of this study. I experienced wide physical extremes, some easily explained and some inexplicable. I recorded both one of the best and one of the worst months for several years but concluded the year with no overall worsening of neurological symptoms.

One major advance was the realisation that, after three years of studying all the dietary alternatives I could find, I have intuitively been following (and will continue to follow) the Glycemic Index (GI) diet. Professor Brand-Miller, et al, published "The New Glucose Revolution" several years ago but I only discovered it recently and realised that it essentially outlined the diet I have independently adopted over the years. As the authors suggest, I now monitor the "quality" of the carbohydrates I eat but otherwise my diet remains essentially unchanged.

The GI Diet takes a common sense approach to eating healthily and appears scientifically sound: I could not say the same for most other dietary regimens I have investigated. There are a number of informative websites on the GI diet and I would recommend you explore them. Useful information can be found at www.glycemicindex.com and http://diabetes.about.com/library/mendosagi/nmendosagi.htm

Despite the extreme swings in my health recorded this year, the overall pattern of my health remained the same. Neurodegenerative symptoms were temporarily worsened by stress, illness, infection, overwork and overexercise. Some prescription and supplementary medications also exacerbated my neurological symptoms.

The most notable negative reaction to a medication was recorded after taking Zocor (in a spectacularly failed attempt to moderate excessive T cell activity). Zocor is primarily used to lower cholesterol and when my cholesterol was rapidly lowered the results were alarming. Fasciculations became intense, widespread and unrelenting. My arms and hands were badly effected and only improved after the Zocor (simvastatin) had been eliminated from my system.

Incidentally, although my cholesterol levels approach the upper range they are not considered "unhealthy". I believe that both HDL and even LDL cholesterols may serve a neuroprotective function and that the unquestioned belief that LDL cholesterol is inherently "bad" should be reappraised. Damaged/oxidised cholesterol is unquestionably "bad" and, among other things, can accumulate as potentially lethal, artery clogging plaque. This damaged cholesterol may also be implicated in neurodegeneration but this has not been widely researched (most of this type of research would normally be undertaken by the drug companies that manufacture lucrative "anti cholesterol" drugs - draw your own conclusions).

The use of plant sterols in one's diet may help to lower excessively elevated cholesterol levels where necessary and may be a viable long term alternative to the aggressive cholesterol lowering statin drugs. [A simple web search for Plant Sterols will yield useful information on foods containing useful amounts of plant sterols].

I continue to regularly present with a chronic low grade infection. Whether this is viral, bacterial or caused by some other organism remains unclear. Both antiviral and anti bacterial medications and supplements used at various stages throughout this study seem to have had little influence on the chronic symptoms I have been recording for several years. I am still occasionally wakened by profuse night sweats and regularly have swollen glands and, for sake of a better description, a variety of viral or flu-like symptoms. Coupled with stress or overwork, these symptoms can rapidly worsen and culminate in severe upper respiratory problems, Fibromyalgic (all over) pain, sleep disruption and extreme fatigue.

My walking remained about the same this year although I now rarely use a walking stick except when in crowed shopping malls, etc. where I am likely to be bumped, side-on. On my daily walks I still take my hiking staff, as I did when I was perfectly healthy. It is useful for balance on uneven surfaces but not strictly necessary as a walking aid. Having said that, there are still periods when my legs (and the rest of my body!) fatigue easily. Although mostly self governing, I do have to take particular care not to overexercise at these times. On "good days" my walking gait, on a level surface, looks reasonably normal. As good days are not necessarily the norm I am grateful for the mobility I have and careful not to push the envelope too far.

Reduced upper body strength, endurance and mobility were a little more problematic this year. This was primarily due to nerve compression in my neck as any systemic neurodegeneration remains relatively limited. This is a good-news/bad-news scenario as little can be done to improve the situation, whatever the cause. As my general activity levels have decreased somewhat I am now finding it difficult to shed abdominal weight. I have a sensible diet and (relatively speaking) a generally healthy lifestyle but hormonal changes and the inability to sustain exercise for lengthy periods have made it difficult to shed weight that was rapidly gained a year ago. Hormone replacement therapy was ruled out as a potential "quick fix" solution so I am losing the weight frustratingly slowly by grams/ounces per month. I saw a cartoon once in which a woman was declaring she could "cure world hunger if she could discover how two spoonsful of cream could make her immediately gain two pounds". My weight gain was so rapid, despite no change in quantity or type of food eaten, that I can sympathise with that woman, especially as losing the weight seems to be taking and interminably long time. The dreadful irony is that many PALS are desperately attempting to gain weight. This type of systemic anomaly leads me to believe the answers to what ails us are unlikely to be found by researchers not considering the entire human organism when seeking a cure for neurodegenerative and other chronic illnesses.

If one believes, as I do, that ALS/MND is most likely caused by a coinfection and will therefore probably be cured with a "cocktail" or series of drugs and/or therapies rather than the single "magic bullet" sought for around 150 years, researchers will need to take a radically different approach if meaningful progress is to be made. With nothing to lose (my work remains officially unfunded) and a great deal to gain I shall continue to research more holistically, always exploring the bigger picture for answers that are surely close to hand.

May update: Ist Month April 2002
Not a bad start to the sixth year of this study. The first two weeks were stable with very few and very mild fasciculations, if any. The second week became more complicated but enabled me to add to my ever growing data base of neurological observations.

My wife and I were both prescribed influenza vaccinations. Within six hours I was suffering strong fasciculations in my left thigh, my thumbs and even my face. My right calf muscle cramped in the early hours of the following morning and hovered on the verge of cramping throughout the following day. Widespread fasciculations, muscle weakness (especially in my thighs and upper arms) continued for 72 hours. After this time I experienced bearable but very definite viral infection symptoms, notably sweating, headache, sneezing, enlarged glands and irritated throat and chest. Soon after these symptoms had fully manifested my fasciculations began to decrease. [My wife reacted differently to the same vaccination with painful local swelling and inflammation at the site of the injection (I had none) and minor viral type symptoms within 48 hours]. This again seems to reinforce previous observations that any stress to my immune system, this time the controlled introduction of a vaccine, dramatically worsens my neurological symptoms.

Yet another adjustment to my prescribed medications also caused problems. (I hope to soon be able to explain why my prescription medications have been changed so frequently). After presenting the results of a week of intense research to my doctor into functions apparently unrelated to neurodegeneration, she agreed to refer me to an endocrinologist (a gland/hormonal specialist). If the endocrinologist is willing to listen to my theories I may be able to report some positive progress in the coming months. As most of us know, professors and specialists are frequently the least likely to be open minded as they tend to be extremely conservative (with some justification, to be fair). Your positive thoughts and prayers for the success of this meeting would be greatly appreciated as any progress I make in this area may mark the beginning of a step forward in treating ALS/MND, if my theory is correct.

The month ended as it began with few fasciculations or other significant neurological symptoms. Walking and general mobility is good although some muscle weakness is still apparent. I am confident this will pass as it has done in the past. With the noted exceptions, this was a good month.

June update::2nd Month May 2002
Armed with a thick wad of progressive blood test results I discussed several ideas with an eminent endocrinologist this month. Other than covering a number of topics we both agreed on, I did not make the progress I had hoped for, last month. My aberrant hormonal changes are primarily a result of "stress" which can include chronic illness, prescribed medications, financial concerns, sleep deprivation and so on. Any one of these would have done the trick but I have the entire set and it has had a pretty negative effect on my endocrine system and hormonal balance. It is not the first time that my research has led me down a blind alley but that's the nature of research. (At least he told me I have no tumours!)

I confirmed this month that I have been carrying a low grade infection, most probably viral (but other organisms cannot be entirely excluded) for many months, if not years. Reviewing my notes the latter seems most likely - again, an accepted outcome of chronic "stresses" mentioned above [As Ada & Cohen, researchers at Trier University, Germany and others have shown]. My immune system is constantly under pressure so I catch any infection that passes by. This month, ear and mild upper respiratory infections caused discomfort and, as I have come to expect, worsened my neurological symptoms. Fasciculations were fairly widespread but thankfully mild and of short duration. I recorded mild cramping in my legs and torso but this is also consistent with the pattern frequently observed when I have viral/bacterial infections.

I did not take any antibiotics as they destroy digestive flora and my main experimentation in coming months will be dietary. Although my diet has been consistent for several years I think I can improve on it and probably lose the abdominal fat that rapidly accumulated after I suffered pneumonia last year. Despite the disappointments and minor infections (which I still have) this was a relatively stable month. Although my energy and endurance were low my walking and general mobility remained unaffected.

July update::3rd Month June 2002
A neurologically stable month. The only problems experienced were again due to reactions to medications prescribed for unrelated problems. This may be due to a rare intolerance to the class of drugs prescribed or an equally rare interaction with medications I have taken (with no ill effects) for several years. The latter reason is the most likely. My wife started taking a similar medication (for stress related hypertension) this month and experienced a lesser but similar negative reaction. As the symptoms appear disconcertingly neurological in nature - tingling, mild cramping, pain and discomfort to the ribcage, left side - I had begun to think the worst. My wife, although chronically ill, has no neurodegenerative symptoms so it seems likely that a prescription drug interaction is the problem. [A purely theoretical observation is that many chronic, degenerative illnesses may result from the same group of organisms that opportunistically infect immunodeficient individuals. The outcome of the resultant infections depends on where in the body the infective organisms are able to establish and reproduce. Organisms gaining access to cerebral spinal fluid cause neurological illnesses, and so on].

I now have new prescription medications that do not seem to be causing problems after nearly a week. With any luck I can put the problems of the last few months behind me.

My walking gait remains good although endurance and lateral balance could be better. I am attempting some gentle upper body exercises and stretches and, if all goes as expected, should observe some improvement within the next few months.

August update::4th Month July 2002
This was by far the best month in ages. My prescribed medication saga is over because an appropriate alternative was found that has no obvious negative side effects. [What a relief].

Fasciculations were rare and minimal this month, although I had some pretty sever but, thankfully, brief muscle cramping. Walking remains good and general health has been stable. Other than my "usual" aches and pains I had little to complain of, so "no news is good news" for this month's brief and uneventful update.

Adjusting my diet is proving to be a hit and miss affair. I am tending to a modified "Mediterranean" style diet with whole-grain rather than white bread and less cheese and pasta. "Trendy" diets abound but don't ring true in my opinion. Only time will tell. Even the long held concept of the "healthy dietary pyramid" now seems to be under attack from the Glycemic Index (GI) proponents so nothing is making much sense to me at the moment. The only thing that everybody agrees on is that we may eat as many fresh fruit and vegetables (and that includes frozen produce) as we like, with the exception of starchy root vegetables. More on that in later updates.

September update::5th Month August 2002
Another essentially stable month marred only by a few isolated incidents and some elevated pain levels during the first two weeks.

For no explicable reason, I had a "fasciculation day". Almost every part of my body experienced brief, low intensity fasciculations at some stage throughout the day. The following day I was almost fasciculation free. As there were no notable changes in my regimen, routine, diet, mood, general health or even the weather I have absolutely no explanation for this event. Similarly, several consecutive days culminated with a headache (mainly to the left side of my head - my "bad" side) that started in early evening and persisted throughout the night. Despite all my efforts I could find no explanation for why this happened.

Another piece in the diet puzzle fell into place this month. I have reduced the amount of pasta I eat but, due to circumstances beyond my control, I ate pasta twice in one week. The first had a vegetable, tomato based sauce and the second a meat, tomato based sauce. After eating the meat sauce I experienced digestive upset, increased pain and fatigue. It's a while since I've eaten red meat and I suspect there was preservative in the minced meat used in the sauce. This confirms my earlier observations that my metabolism is adversely affected by red meat and/or food preservatives.

I increased my OPC (grape seed extract) this month from 100mg (2 capsules) to 150mg (3 capsules) daily. Other than the unexplained and isolated incidents in the first two weeks of the month there seemed to be no negative side effects and I am tolerating the higher dosage well. I am hoping to observe the positive benefits described on the OPC page of this website.

My walking was particularly good this month. I even tackled some very steep and uneven terrain with little difficulty (although I lacked the stamina to sustain the effort). There were no lasting, negative after effects. To the casual observer I would have appeared to be walking "normally" despite my reduced muscle strength and endurance. This is not the case 100% of the time but these particularly good days are extremely encouraging.

I am astonished to note that on the 25th of September I will celebrate yet another birthday! Birthdays are far more significant now than they ever were and I thank God and everybody who has helped me in the past year to get me to this milestone once again!

Pain levels were worse than usual throughout most of the month. During the first week I suffered unexplained sporadic depressive episodes. Other than the usual financial pressures that seem to be an integral part of long term chronic illness, I could identify nothing that triggered depression so I must assume that there was some brain chemistry imbalance. I used every technique I know to combat depression and some of the bouts consequently only lasted for half an hour or so but after a brief respite the depression would return. Quite suddenly the problem stopped - like it had simply been switched off.

The only unusual circumstance during this period was the craving for salty foods. When I ate salty foods my fasciculations coincidentally decreased. Sodium/salt is an important part of cell function and communication but I was unable to relate this to what was happening to me at the time. Some PALS have commented that salt sometimes appears to decrease certain neurological symptoms but this is purely anecdotal and extremely difficult to evaluate. I have never the less noted it for future reference.

At the time the only thing that satisfied my salt craving adequately was bacon and similar foods, which I rarely eat under normal circumstances. Despite eating lean bacon, the level of saturated fat in my diet increased markedly for nearly two weeks. I noticed a general feeling of malaise after a few days. A week after finishing my "bacon binge" things started to return to normal. This reconfirms my belief that excessive saturated fats (and possibly preservatives?) in my diet has a palpable affect on the way my body functions. It is possible that my elevated pain levels are attributable to this because pain levels decreased somewhat after eliminating the excessively fatty foods. Whether any of this is correct is pure conjecture but I share it with you in the belief that if we compare such observations we may discover another piece of the ALS/MND jigsaw. Papers have (finally) been published that supports my observation several years ago that lipid metabolisation is an important factor in neurodegenerative illnesses.

For the last week of the month I doubled my Ginseng intake from 2 capsules (~800mg) to 4 capsules (~1600mg) daily. This is in an attempt to offset lowered testosterone levels (and resultant abdominal weight gain despite unchanged diet and activity levels. This time last year I was losing unwanted weight). No negative symptoms recorded. Pain levels reduced during this period but it's too early to infer much from this.

My mobility is still relatively good and my general neurological condition remains stable despite the peculiarities of this month.

My month started very strongly. I completed a six kilometre walk on the 2nd October (the car broke down!) with no negative side effects. Inspired by this, I started to walk 2 kilometres morning and evening. After almost a week, this increased activity was causing increased fasciculations and some painful cramping. I limited these "double walks" to every second day but the fasciculations and cramping grew worse. After a week of returning to single 2km walks, all adverse symptoms ceased. I now undertake double walks once or twice a week. I seem to be able to tolerate these quite well.

For the last week of the month I was only able to walk slowly because my chest infection made it difficult to breath. I also had incredibly low energy levels and was falling asleep in my chair (sometimes for two or three hours) whenever I stopped working or moving around. I felt permanently exhausted but this, I am assured, is a symptom of the infection plaguing our town.

At the start of the month I was sure I would now be reporting my best month ever. There is a theory that the drought already afflicting most of Australia and resultant dust storms, during what should be the wettest time of our year, are partly responsible for the widespread upper respiratory infections. For this reason I am not reading too much into this month's health problems, particularly as I was progressing so well at the beginning of the month. My doctor has me taking antibiotics and doing all the right things to overcome the problem so I expect to be well within a week or so.

Many thanks to Alan Inglis this month for his valuable assitance in maintaining this website.

I made a mental "leap of faith" and resolved to plead with my doctor this month to prescribe simvastatin (Zocor is one trade name) to include in my personal clinical study. [Coincidentally, I came upon an article suggesting that may be useful in treating certain auto immune illnesses]. On closer examination my family doctor agreed that my now somewhat elevated cholesterol, trigylcerides and blood sugar levels, etc. actually warranted the use of simvastatin. I can only hope that the potential link I observed many years ago between lipid and complex-sugar metabolisation and degenerative illnesses might be confirmed by my study and the other data that are only now becoming accepted by the general medical community. (I know from past experience that my approach will be dismissed by neurologists so I would discourage PALS from requesting simvastatin prescriptions). The outcome of my experiment will be published here in coming months.

I continued with my normal regimen but the first two weeks of the month were also devoted to consuming three full courses of antibiotics which eventually restored both my voice and breathing to near normal, despite relentless bushfire smoke and dust storms from the worst drought on record. Throughout the month I was unavoidably active with house repairs, rescuing native animals, etc. The usual results of increased fasciculations, pain levels and cramping/muscle spasm were recorded but, all things considered, this was not such a bad month. I was pushed to the limit but pulled through - again!

A couple of stressful events had to be dealt with this month and I had to use every technique I've learned to cope - but I did cope. [See my Therapies page for the techniques I am referring to].

I managed to minimise the potential excesses of the holiday season. I discovered that my appetite for extremely rich foods is greatly diminished, although I did enjoy the minor departures from my chosen dietary restrictions. The good news is that my voluntary restraints are now self governing. I did not feel deprived or hard done by - "a little of what you fancy (occasionally) can't hurt you" appears to be true. A little common sense seems to be all that's required.

I continue with the prescription medicine simvastatin (Zocor) with no obvious ill effects at this stage. Possible beneficial effects are not yet apparent but this was to be expected. If there are any changes I shall record them here.

As we step into 2003 I remain confident that a cure for ALS/MND is imminent - indeed, I am surprised it didn't surface in 2002. I am still piecing together the metaphorical jigsaw puzzle of research data I have gathered and am anticipating that "eureka" moment more eagerly than ever.

Experimenting with new medications is always a hit and miss affair but my lipid/cholesterol modifying experiment with Zocor was as close to a disaster as anything I have tried. This is the great drawback of being my own lab rat. Although the experiment was negative, I feel that I am accruing useful data about cholesterol metabolisation and neurodegeneration. A number of papers have been published claiming that the accepted view of cholesterol levels and ratios needs redefining and it is not the amount of cholesterols but their condition (oxidised/damaged) that leads to medical problems. Put very simplistically, it may become "acceptable" for cholesterol levels to be slightly abnormal in some people with neurodegenerative illnesses. This will definitely become a focus of my personal research in the coming months. [Several PALS have contacted me to reports negative, sometimes extreme, reactions to statin/cholesterol lowering drugs such as Zocor. Like them, I would advise against taking it if possible].

By the end of the month I was walking "normally", pain levels were manageable, my arm and thumb feel a little weaker but, in real terms, seem to be functioning the same as before the Zocor.

The left thumb fasciculations recorded last month returned and spread to both arms for more than a week. Stressed by this and everything else that was happening, my neck and shoulder muscles spasmed and pinched a nerve in my neck that painfully immobilised my left arm (the thumb fasciculations continued). From the beginning of the month I had been experiencing overwhelming waves of depression. These depressive phases were not related to any specific event(s) and I questioned in my notes if an unexplained brain chemistry change had precipitated what was happening. [Other PALS have reported such episodes].

In short, this month was physically, emotionally and mentally draining. I worked myself to a standstill yet can offer only this bleak update for the month of February - although I am ever mindful that life is routinely far more difficult for millions of others and I have little to complain about.

I have returned strictly to my basic regimen, discontinued all but essential prescribed medications and am making every effort not to take the setbacks of the last two months to heart. I am stable at the time of writing, still walking daily and feeling far better right now than I have all month. At the risk of sounding flippant, I remind my self that "The Lord said it came to pass - there was no mention of it being here to stay..." I also learn more from these apparent setbacks than at virtually any other time, so I look forward to providing a more positive and informative update next month.

After the problems of the last two months I returned strictly to my fundamental regimen, which included the use of the prescription anti inflammatory medication, Voltaren. [Two or three other anti inflammatories seem to work equally well and several, including Celebrex in my case, do not work at all]. When the anti inflammatory medication does not work my neurological symptoms worsen to some degree. After several month of using one type of anti inflammatory medication I change to one of the other medications until they too gradually become less effective. The only "change" I made this month was my cyclical return Voltaren and fasciculations and other neurological symptoms improved, as did the anti inflammatory medication's effects. The antioxidants I take also have an anti inflammatory action.

My annual medical review this month indicated that no major neurological deterioration has taken place in the last year. I am no better but definitely no worse. My left arm and leg remain weaker than my right arm and leg but generally speaking, fine motor function is not greatly impaired. Some upper body muscle mass has been lost but this is probably due to worsening of an old cervical spinal (neck) injury.Some other non-neurological physical problems were diagnosed but these can be managed and, hopefully, overcome.

So ends another year of this study. I already have many plans for next year as we move ever closer to a cure for ALS/MND.