I would once again like to thank Nature's Sunshine Products of Australia Pty. Ltd, and in particular Mr Stephen Webster for sponsoring me and supplying the high quality Nature's Sunshine products to assist me in this fifth year of my study. 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.

You will find the staff at Nature's Sunshine extremely knowledgeable, helpful and efficient. This study could not have progressed to anywhere near this stage without their ongoing encouragement and support. I would like to think that their kindness and generosity has directly or indirectly assisted PALS around the world. I am deeply indebted to them and recommend them without hesitation

There were no changes detected in my neurological symptoms at my annual medical review, despite some pretty extreme but short lived fluctuations throughout the preceding year. So, my condition is not significantly better or worse than at this time last year. This is excellent news as a constant rate of neurodegeneration is one of the primary symptoms in standard cases of ALS/MND. I still experience all the symptoms of neurological illness that existed when I was diagnosed with ALS/MND but they are greatly reduced and seem to be doing little discernible damage despite an increasing tendency to manifest in the right as well as the left hand side of my body. At the time of my diagnosis symptoms were primarily in the left side of my body. Fasciculations and minor cramping now tend to occur at similar frequency and levels throughout my entire body, usually on waking or at rest after exercise but fortunately they are usually low level and infrequent.

General health problems impacted on this year's study. Constant titration (manipulation of doses and combinations) of my prescription medications also made it difficult to maintain a stable "base level" for experimentation with new supplements. I never the less managed to experiment with several supplements when possible but none appeared to positively affect my neurological symptoms. Among the supplements tested were Kava kava and Magnesium to help relax muscles and reduce stress. Neither seemed to assist significantly in may case, either alone or in combination. I was also fortunate enough to try Immunocal but the results were inconclusive as I did not have sufficient product to conduct a thorough investigation. I also tried Dr. Whitaker's "Forward Plus" regimen (see http://www.drwhitaker.com ). This is an extremely well balanced daily regimen that included some micronutrients not included in my personal basic regimen. Whether the Forward Plus regimen alone is sufficient to supply adequate therapeutic levels to treat ALS/MND is something I was unable to establish as I would have had to abandon my own regimen to conduct a fair clinical comparison - a step I was not willing to take. Perhaps PALS could use this as a cornerstone of their personal therapeutic regimens? That question unfortunately remains beyond the scope of this study.

My general health continued to fluctuate for no apparent reason throughout the year. It remains clear that my immune system is under pressure but the precise source of this pressure remains undetermined at present. Blood tests also showed a decrease in my testosterone levels (common among male PALS) and resultant disruption of blood sugar, blood pressure and cholesterol levels. More study is needed in this area and will be covered in the coming year.

Changes in prescribed medications, sleep problems and unexplained extremes of pain and general health issues were a feature of Year 5. My neurological symptoms varied widely but did not cause discernible muscular degeneration or denervation. I still walk at least 2km daily (frequently more) and remain as active as possible - taking care not to "over exercise (easier said than done!). I have survived another year and retain my commitment to "keep on keeping on" for as long as it takes.

1st Month April 2001 Another year begins. Another year I never expected to see and a year in which I hope to finally encounter a cure for my neurological symptoms. While there's life there's hope and while research progresses so rapidly in so many potentially beneficial areas there is much to look forward to in the near future.

This month I started taking Kava Kava (better known as a fermented, alcoholic drink in various native, tropical tribal cultures). Unfermented, it has a calming effect, relaxes skeletal muscles and, in combination with other supplements (notably magnesium complex) may reduce the painful symptoms of fibromyalgia frequently recorded throughout the past two years. Taking kava kava alone produced no negative side effects but, as recorded previously, regular doses of magnesium seem to worsen my fasciculations and cramping - the opposite to what would be expected. I shall titrate the magnesium dose rate until I find a level that I can tolerate. This repeatedly negative response to treating my neurological symptoms "head on", so to speak, must surely be indicative of physiological processes that are inadequately explained in medical literature. Such responses have long been recognized and treated accordingly in traditional Chinese medicine but are poorly understood in Western medicine. It is an anomaly that must surely be significant and I remain frustrated at having to repeatedly report its occurrence without adequate explanation.

Perhaps due to the reintroduced daily magnesium dose, unlike most PALS I recorded widespread, but fairly minor, fasciculations this month. This always concerns me, especially if I suspect that they are induced by my "lab rat" endeavours. I sometimes question if it is prudent to keep pushing my body when I know that I can comfortably maintain the status quo by simply sticking to my basic regimen. [Had I adopted this conservative attitude in the first place I probably would not be around to complain now so, ever onward in the name of science and knowledge... I feel like Don Quixote!] There is sure to be a combination of supplements that will help if I am willing to endure negative effects encountered in the process of discovering what works for me.

2nd Month May 2001 Time to give my poor body a rest (my wife's orders).  I have not experimented with any new supplements this month and have taken only the basic supplements that comprise my regimen.  Experiments combining Kava and Magnesium last month seemed to increase my fasciculation frequency and extent. I have used kava in the past with no obvious worsening of fasciculations so it seems likely that the increase could simply have been due to constantly introducing new supplements and repeatedly stressing my metabolism. I certainly seem to stabilise and have lower levels of, and less frequent, fasciculations when I "keep things simple".  After this month's rest I shall slowly introduce Kava again and observe the outcome.

Lyme disease is rarely diagnosed in Australia, although the Lyme/borrelia spirochete is present in this country, so it has been difficult to find a doctor to take Lyme testing seriously.  The first doctor I contacted said, "Yes, we can test for Lyme disease - but we won't find anything"(!)  This seems to be the general attitude in many countries although many people, like me,  have travelled to areas where Lyme disease is relatively common. The night sweats and the feeling that I frequently have a mild viral infection could be attributable to infections such as babisiosis, which are common co-infections in Lyme patients.  Such infections can be transmitted by mosquitos as well as the deer tick most often associated with Lyme disease. I have finally found a doctor to test me for Lyme/borrelia and other related infections.  He takes the concept that spirochetal infection could lead to neurodegeneration quite seriously. When I have been tested I shall report the results here.  The same doctor (following Prof Garth Nicolson's protocol used at IMM) may also be able to conduct mycoplasma tests.  My five attempts to be tested for Mycoplasma infection by sending blood to the USA failed due to lost specimens, broken specimens, spoilt specimens, delayed delivery of specimens, etc.  It will be good to finally discover exactly what is or is not actually disrupting my immune system and causing the symptoms so frequently recorded here.

Although I still have "bad" days, my walking gait is excellent at present.  If I had more strength in my lateral quadriceps and could walk further without provoking fasciculations or cramping later in the day, to a casual observer my walking would appear normal.  Somebody who did not know of my illness was surprised to hear that I had anything wrong with me.  In part, this is due to my ability to "hide" the symptoms but it is encouraging to receive confirmation of how far I have progressed since diagnosis.

3rd Month June 2001 Within 24 hours of writing last month's update I experienced one of the worst days of my life.  My entire body hurt so much and for so long that I went into clinical shock and was nearly hospitalized.  Fortunately, my wife was able to convince a doctor that I would be better cared for at home if he could temporarily prescribe large doses of pethidine.  It took several days to recover.

Every muscle in my body seemed to spasm/cramp. This was accompanied by an unbearable headache and neurological pain that could not be controlled by my normal medications.  Although I have suffered the same degree of pain in the past I have never experienced such widespread, intense and totally uncontrollable pain for such a prolonged period. Fasciculations were frequent, extensive and quite strong at the time and for several days afterwards. Why this happened is a mystery.  My wife, Vicki, was starting to suffer from a cold/flu virus at the time, which culminated in bronchitis and sinusitis.  I developed mild "viral" symptoms a day or so later but they did not manifest  to the extent that Vicki's did.  Perhaps the load on my immune system triggered my alarming neuromuscular symptoms? The excessive workload of the previous months possibly lowered my resistance. Other than this there was no medical explanation offered.

As my month was spent nursing both myself and my poor wife, simply surviving was as much as I could cope with throughout most of June.  Experimentation with supplements was out of the question for most of the month but I did manage to find workable doses of Kava and Magnesium. If these supplements help, as they should do in theory, I shall report it in future updates.

4th Month July 2001 Medical tests and (yet more) prescribed medication changes dominated this month. My doctor, who is extremely supportive and assists in my quest for answers to the ALS/MND mystery, ordered a testosterone level blood test as I suspected it would be low. It was. More tests will follow in an attempt to discover why this is the case but many male PALS who have been tested also have low testosterone levels. Testosterone is more than a sex hormone. The body requires testosterone to maintain good cardiac, brain and neurological function. Protein synthesis for maintaining muscle mass and bone formation requires testosterone. It improves oxygen uptake throughout the body, helps control blood sugar, regulate cholesterol and maintain neurological function. Over the next few weeks I may need to discuss an appropriate treatment, possibly hormone replacement therapy.

A night at a sleep study clinic revealed that I did not suffer sleep apnoea but that my "sleep architecture" was severely disrupted and "consistent with chronic fatigue states". This was nothing I have not known for several years but something that required further adjustment to prescribed medications. So far this has been extremely unpleasant and has resulted in nausea, extreme fatigue, little improvement in sleep pattern and even mild anxiety and depression. Discovering the correct combination of drugs to combat the sleep/chronic pain cycle is likely to take time. There may also be a few failures before we find something that helps.

A friend was kind enough to send a supply of "Forward Plus" capsules for me to try. This also required careful rethinking of my normal intake of supplements. I stopped taking the supplements included in Forward Plus but maintained my usual supplements for liver function plus my OPC in addition to the Forward Plus regimen, which includes many of the supplements I normally take (but at different dose levels) plus several other supplements that I theorized might be useful (including chromium). Full details of the Forward Plus regimen can be found at http://www.drwhitaker.com.

As in several recent months, a meaningful assessment of Forward Plus and other supplements was made extremely difficult whilst adjusting prescription medications and dealing with the unfortunate and unpleasant side effects. The good news is that I have experienced no further neurodegeneration despite periods of sustained fasciculations that I would normally associate with a worsening of my symptoms. I am reminded yet again of what a fine line I am treading and how very easily my health and wellbeing can be disrupted. With any luck, the necessary experimentation with my prescription medications will be resolved soon and I will be able to make a more concrete contribution to the observation of the effects of supplementary medications on the neurodegenerative process.

Yesterday I walked 6 kilometres (over three miles) which is the furthest I have walked in 8 years. I'm muscle-sore today but pretty elated that I was able to manage the walk at all.

5th Month August 2001 What a good month. Several days without fasciculations and all but the inevitable "bad days" were almost fasciculation free. Fasciculations were mostly restricted to soon after waking in the morning or when resting after exercise. I even managed to reduce my prescribed pain medication on several occasions.

I started taking Artemesia annua this month. Although I have still not been able to be tested Lyme and related infections, it was suggested that some of my non neurological symptoms, particularly unexplained night sweats, might be caused by babisiosis (often detected in conjunction with Lyme). Artemesia is used to treat many protozoal infections, including malaria and giardia. This is the first month in the last few years in which I have not recorded night sweats. Due to lack of comparative data I cannot claim that the artemesia has "cured" my night sweats and related symptoms but, empirically, it appears to have helped.

The titration of my prescribed medications seems to be progressing well. I'm sleeping better, although there is still a way to go before that problem is completely resolved. It's amazing what a few good night's sleep can do to improve one's general wellbeing. It is almost certainly the reason my energy levels have improved and has probably contributed to decreased pain levels.

I continued with the "Forward Plus" regimen, mentioned last month. It is certainly convenient to have the capsules combined in one package but, apart from some minerals and trace elements, it supplies many of the same supplements as my established regimen. I shall stop taking Forward Plus next month to establish if this good month may be attributable to the micronutrients not available in my normal regimen. I'll use it again for another month in the near future in order to make a direct comparison.

On the 25th of September I celebrate yet another birthday I was not supposed to have. This being my 50th, it will be a particularly special event!

6th Month September 2001 A patchy month: a bit of this and a bit of that and little of any consequence to show for it. I had several particularly bad pain days, several rampant fasciculation days and several excellent zero or near zero fasciculation days. The fasciculations decreased within 48 hours after returning to my fundamental regimen. With the unexplained swings in my condition I could do little more than observe and take notes. Having taken notes I am really none the wiser. Perhaps the triggers of these events will become clear when I have sufficient data?

Throughout this study I have often undertaken minor "projects" that do not warrant reporting here. Suffice it to say that I rarely allow a month to pass without trying something new or slightly different. This month as usual, when health permitted, I discontinued supplements entirely for a day or two. I reduced some doses or took just the morning or just the evening dose for a few days. Some I took on alternate days. When all is going well this is a fairly normal thing for me to do. If there are no detrimental side effects, after several repetitions over an extended period I may alter my dose rate or even the supplement combination itself. The "try it and see" approach is how I've progressed this far, each month learning a little more in an attempt to better understand my neurological condition. I know that my fundamental regimen works for me but am constantly attempting to find combinations and dose rates that may also help others with neurological illnesses.

PS My sincere thanks to all the people who wrote to wish me a happy 50th birthday. I had a wonderful day and look forward to more birthday celebrations in the future. Also, I've made numerous minor adjustments throughout the site that do not really qualify as "Updates" and have read through a great deal of new information that still needs to be researched and rewritten. If it appears that less than usual has been achieved this month, be assured that much has been going on behind the scenes...

7th Month October 2001 My month commenced with the ten day Australian Heart Foundation diet. The diet was designed, in part, to kick-start a sluggish digestive system and help remove unwanted body fat with minimal loss of muscle tissue. I did lose some unwanted weight but the primary reason for the diet was to improve digestion and increase my metabolic rate to partly compensate for my inability to undertake vigorous exercise. Although I still walk daily, this can hardly be considered vigorous, fat burning exercise. My occasional excessive gardening exploits and over ambitious physical activities generally end in several days of pain, cramping and fasciculations. Moderate, consistent exercise, where possible, is undoubtedly most beneficial.

I thought I'd managed to sneak through the cold and flu season unscathed but was proved wrong halfway through the month. Just as every coughing and sneezing person around me was recovering, my previously recorded (now predictable) "viral pattern" began to emerge. First, fasciculations increased in frequency, intensity and distribution. The inflammatory/pain cycle followed, leaving me miserable and incapacitated for an entire week. During this phase an extremely sore throat followed by an upper respiratory infection manifested. This pattern has occurred often enough for me to offer an explanation of what may occur when my immune system is stressed.

As my immune system first detects a pathogen it is put "on alert" and during this period, before obvious viral symptoms have manifested, fasciculations increase significantly. I believe the fine balance I have achieved with my regimen is most easily upset at this point. With my immune system thus "distracted", my non neurological symptoms, which include inflammation and severe, disabling pain, worsen significantly. Only after that do the typical viral, cold/flu symptoms manifest. At this point fasciculations and pain gradually decrease as my immune system prevails. I know from experimentation and experience that boosting my immune system does not help at any point of this infective cycle. At the time of writing the viral symptoms have disappeared but elevated pain levels remain. Fasciculations have been minor to virtually non existent for nearly two weeks.

It is quite clear from my records that my neurological symptoms are directly affected by stress to my immune system. Attempts to moderate this by using immune system boosting supplements have not only failed but worsened my symptoms in the past. With five years of data now accrued this must surely be a significant finding. The overactive and damaging immune response of illnesses such as Lupus may be worth investigation. I am not suggesting that the two illnesses are directly related but the biological processes involved may offer a broader understanding of some neurodegenerative illnesses. It is interesting to note that mycoplasmal infections have been implicated in both ALS/MND and Lupus by some researchers.

Footnote: I have found that I can tolerate Magnesium at half the recommended daily dose but as I do not appear to be benefiting from taking it I shall discontinue my experimentation with supplementary Magnesium. Many PALS report that they benefit from taking supplementary Magnesium but that is not so in my case.

8th Month November 2001 Well - go figure. The first 26 days of the month were among the best I've experienced this year. Few fasciculations or other neurological symptoms. A little tired on day 26 then a sore throat on waking on the 27th day. By the end of the day I had an uncontrollable fever (hallucinations and all, just like the movies!) Soon it became clear that I had Pneumonia. Luckily (?) I had experienced the symptoms of pneumonia before and knew to seek the appropriate treatment immediately. After a few days of extreme pain, discomfort, and very little sleep I emerged battle weary, exhausted and light headed but apparently on the road to recovery.

Something is clearly amiss with my immune system.

After the rigours of the previous month I had allowed a week to stabilize to somewhere near my "normal" before I finally starting to trial Immunocal© [my sincere thanks to Steven Petrosino, PhD for providing a thirty day supply for this study]. My initial concern was that the immune system boosting properties of this product, as mentioned last month, might cause problems. There was no neurological reaction to the the product as there have been to most others. I had been taking Immunocal for 20 days when pneumonia struck. Perhaps my immune system was too run down for the Immunocal to assist at the time or maybe I need to take more of the product for a longer period to assess its efficacy in my case? My trial of this product, under the circumstances must be considered inconclusive.

I was in no condition to keep detailed records of my neurological symptoms throughout this episode but, predictably, did manage to record that fasciculations increased in frequency, intensity and extent. Otherwise the overwhelming and extremely unpleasant symptoms of pneumonia overshadowed all.

In short, this "month" comprised 26 good days followed by a dreadful week of ill health terminating with a huge question mark.

9th Month December 2001 Perhaps I was a little premature in stating that I had almost recovered from pneumonia last month. I was still taking an antibiotic cocktail (three full courses) until a few days before Christmas. The chest infection proved extremely difficult to shake off and I still have minor symptoms. Consequently there was no opportunity to experiment with supplements or research potential advances in ALS/MND treatment.

The antibiotics also took their toll, notably disrupting digestion and causing abdominal bloating and discomfort. Fasciculations became more extensive and persistent, although intensity was fairly mild. After Christmas, (possibly as a result of eating more meat and sugary foods than normal?) general fasciculations worsened further. As I do not drink or smoke, the only lifestyle pattern that changed (temporarily) was diet.

General pain levels tended to be lower prior to Christmas but this could be attributed to enforced inactivity - I tend to push myself a little too hard under normal circumstances. General pain increased significantly in the post Christmas period. Again, the only obvious cause would seem to be dietary but that may be oversimplifying things. It will take some time for beneficial digestive bacteria to reestablish after such a long course of strong antibiotics. Probably the combination of Christmas fare and depleted digestive bacteria have stressed my liver function. This would certainly be consistent with previous observations and yet another example of digestion/liver function affecting my neurological symptoms.

Reading through my notes, this month's post Christmas fasciculations were among the worst I've experienced since the first year of this study. I also notice a pattern that, in any single month, this study is often interrupted by minor infections/illnesses despite my relatively "healthy" lifestyle. Immune dysfunction, diet, digestion and stress all seem to adversely effect my neurological symptoms. I'll have to console myself with something my grandmother used to tell me: "You can't be expected to do better than your best, love. You'll do better next time". I sincerely hope so.

10th Month January 2002
A far better month to start the new year.

I "accidentally" experimented with milk this month. I had an urge to drink a glass or two of milk each day for about three weeks. I minimized my milk intake several years ago and was quite enjoying the novelty of drinking milk again. When I started to record increased fasciculations and brief but severe and painful cramping in my calf muscles I was forced to admit that milk might be the culprit. Within 48 hours of reducing my milk intake cramping ceased and fasciculations dropped to near zero (minor fasciculations upon waking in the morning). I know that calcium supplementation has caused muscle cramps in the past, despite the textbook logic that calcium supplementation should assist ALS/MND symptoms, and this was possibly borne out by my "milk binge". [Some would claim that milk also contains heavy metals and other toxins but I cannot confirm this]. Moderate yoghurt consumption does not seem to cause problems but I have never eaten yoghurt daily in order to make a direct comparison. The reason I eat yoghurt at all is to obtain the beneficial lacto and bifido bacteria it contains.

Following my long term antibiotic consumption last month I took a high dose digestive bacteria supplement in an attempt to restore normal digestive function. Although certain brands of yoghurt contain these beneficial bacteria they only provide a few thousand organisms with each serving: I opted to take a 28 day course of acidophilus, bifidus and lactobacillus providing billions of beneficial organisms daily. [n.b.. there are several brands of supplements that supply high levels (billions per dose) of these beneficial bacteria]. Much of the discomfort, abdominal bloating and digestive upsets of last month were relieved. Predictably, as my digestion improved so did my neurological symptoms.

Other than a few days of fibromyalgic pain at the end of the month, for which I could find no preceding causal pattern, this month went well. These "flare ups" seem to occur almost randomly even when I do not stray from my fundamental regimen. There is so much still to understand...

11th Month February 2002 After four months of withering drought it finally rained in Goulburn. Perhaps this extreme change in weather was partially responsible for the increased levels of fibromyalgic pain, inflammation and fatigue I experienced for most of the month. I was pretty much incapacitated for much of the time. My doctor suggested that I can expect setbacks for several months as an after effect of the pneumonia I experienced in months 8 & 9.

As there is little experimentation I can do with supplements, etc. at present, my current goal is to further research and modify my diet . Of all the research I have read, all "matters dietary" are by far the most difficult to pin down. Very few experts seem to agree precisely as to what comprises a "good" diet. What was a good diet two years ago may be superseded by new findings at virtually any time. Dietary wisdom discarded a decade ago may suddenly come back into favour. I am therefore attempting to discover, by trial, error and careful deduction, what appears to be an appropriate diet for people with neurodegenerative illnesses. Information I have included on my Diet page still stands but I'm sure I can add to and improve the information with what I Iearn from personal experience.

Although I have stuck closely to my fundamental regimen, general blood tests this month indicate that I am having problems - although that has been quite apparent from my uncomfortable and varying physical symptoms over the past few months. i shall know more by the end of next month and possibly have a better understanding of what has been ailing me of late.

12th Month March 2002
A good month to finalize the fifth year of my study. There were no major problems and my condition remained stable in all areas despite some long distance traveling and a few days of excessive activity. Fasciculations were rare and low level. There was no cramping.

I had my annual physical review this month and am essentially no better or worse than I was at this time last year. I have put on some muscle bulk in my arms and my right thigh and lost a little from my calf muscles - nothing really significant. Reflexes and nerve conduction seem to have remained the same, within the limits of the tests. I still have digestive problems and within the last three months my blood sugar, cholesterol and blood pressure have become elevated for no apparent reason. I shall look into the cause of this and attempt to correct the problem(s) in the coming year.

There is a possibility that my weight gain reported earlier this year and my inability to shed it are due to (oh, the irony) not eating enough. My body has gone into "famine mode" and what I eat simply turns to fat because I frequently do not eat enough of the right foods throughout the day. Many days I only eat two slices of toast in the morning, forget lunch then eat toast or cereal in the evening because I cannot be bothered, or am in too much pain, to cook a proper meal. When I do cook (and I cook quite well) I tend to eat an oversized portion to "make up" for the preceding days during which I ate very little. My body grasps every morsel and converts it to fat. Needless to say, I shall be paying far more attention to my own dietary needs and the study of diet in general throughout year six