Nature's Sunshine Products of Australia Pty. Ltd, continue to sponsor this study and supply high quality supplements to assist me in this seventh year of my study. I would again like to thank Nature's Sunshine and Stephen Webster and Robyn McInnes . See Nature's Sunshine's website. They can be telephoned on +61(0) 2 9894-0111 or faxed on +61(0) 2 9894-2422. Their Australian address is P.O. Box 6884, Baulkham Hills Business Park, Baulkham Hills NSW 2153.

The staff at Nature's Sunshine are knowledgeable, helpful and efficient. This study could not have continued without their ongoing encouragement and support. I am indebted to them and would not hesitate to recommend their quality products and service.

My study year began in hospital with prolapsed discs and nerve compression in my lumbar spine. This was the result of instability caused by an old spinal injury. It effectively "wiped me out" for several months but provided the opportunity to use neurontin. Neurontin was prescribed to control my overwhelming sciatic pain and worked extremely well in this capacity. It was once prescribed to treat ALS/MND but, as concluded in several medical studies, I discovered it made no difference to my recorded neurological symptoms.

I had all my amalgam fillings replaced with non-toxic substitutes and noted no obvious worsening of symptoms from the procedure as has been reported by some PALS. There were no immediate adverse symptoms and ten months later, no long-term symptoms that I am aware of. It would be good to say that I feel considerably better now that the amalgam fillings are gone but this is not the case either. I would like to think there will be long term health benefits but can claim none for this period of my study.

It was difficult to find a Lyme Literate Doctor (LLD) in Australia to take my blood test results seriously. These tests indicated I had chronic Borrelia (Lyme) and Babesia infections. When I eventually found a suitable microbiologist I was unable to make the journey to see him because of my spinal problems. It is unfortunate that this was delayed because it could prove to be an extremely significant aspect of my research. At this stage, any outcomes and treatments will probably feature in year 8 of this study.

On the whole, my neurological symptoms remain unchanged. I recorded one of the longest near symptom free periods of this entire study so far. For reasons I am at a loss to explain, I also briefly recorded the worst neurological symptoms since being diagnosed. Why I should have experienced such widely differing symptoms remains a mystery. I now have seven years of observations to draw on but could discover no pattern leading up to either of these extremes. There are quite obvious physiological circumstances that worsen my symptoms but these did not apply in the instances mentioned.

As has been apparent in previous years, I seemed to be fighting off a low grade infection that manifested as a sore, swollen throat, night sweats, headaches, "all over" pain, fatigue and a general feeling of malaise. The only truly consistent feature of these symptoms was their inconsistency. Headaches would start in the middle of the night and wake me or I could go to bed with a sore, swollen throat and wake up feeling OK. Sometimes the symptoms mentioned lasted for many days or came and went rapidly. Occasionally they occurred concurrently and other times they manifested alone. A consistent feeling of "a mild flu" or "coming down with something" accompanied the symptoms mentioned.

During December (summer in Australia), dust from a large real estate development to the northwest of my home (the direction of the prevailing wind) caused many people living downwind to experience severe upper respiratory infections that progressed to pneumonia in many cases, including mine. At the end of this study year I am still attempting to discover if mycotoxins from fungal spores are responsible for the infections and subsequent pneumonia. I still have a chest infection that worsens when dust is carried from the site of the new buildings. The State Health Department has yet to comment on my suggestion that mycotoxins from the site could be causing problems.This is unfortunate because the respiratory infection significantly influenced my study and it would have been helpful to know the precise cause of atypical health outcomes.

To sum up, it was a painful, uncomfortable and in many ways frustrating year. Despite this I am glad to be alive and have great faith that a cure for ALS/MND will be found in the near future. The good (excellent?) news is that after another twelve months my neurological symptoms, despite the fluctuations mentioned, remain fundamentally unchanged.

May update: 1st Month April 2003
The first month of the seventh year of my study was disrupted by severe spinal and leg pain and a period of hospitalization. Much of this month was viewed through a haze of powerful painkillers or equally powerfully disabling pain. The event leading to the nerve root compression inflicting the pain could have been as simple as twisting or bending incorrectly and causing already prolapsed spinal discs or damaged vertebrae to impinge on sacral nerves. The only cure is rest and eventually physical therapy and gentle exercise. This simple injury "ate my month". The acute symptoms are improving slowly but I had no opportunity to experiment, work or advance my ALS/MND research significantly.

A slow and uncomfortable start to my year but I must assume things will improve from here on.

Blood tests indicate that I very probably have Babisioisis. This likelihood was also suggested but not confirmed by blood tests several years ago and if correct would explain the night sweats and recurrent "virus like" symptoms recorded throughout this study. This could also be a factor effecting my neurological symptoms. When an appropriate treatment is decided and undertaken I shall publish the results here. There was also an indication that Borrelia bergdorferi antigens were present in my blood. This is the same organism that causes Lyme disease, an illness that presents with a variety of symptoms that can include severe neurological degeneration. [see Lyme Disease in Contents bar <<< left, for more information]. These findings need to be confirmed but, if correct, would explain many of my symptoms, both neurological and general.

I have finally had all amalgam fillings removed from my teeth [I would like to sincerely thank Jarrod & Carrie Cunningham for their assistance]. It will be some time before I can assess if amalgam removal has been beneficial (although it may be no coincidence that for the last two weeks I had near zero fasciculations). There have been no obvious ill effects that I could attribute to the removal process, which took place over the last few months. The hope is that by removing a potential stressor (mercury) from my body it will assist my recovery and decrease some of the non-neurological health issues that have occasionally impeded my clinical study.

Although limping due to back and leg pain, I have walked as much as possible and have been exercising to strengthen the muscles supporting my spine.

A difficult month but one that will hopefully take me several steps further towards good health.

As usual, my neurological symptoms worsened dramatically whilst my immune system dealt with the virus. Fasciculations became more frequent, extensive and intense. I experienced strong cramping that may or may not have been provoked by the prescribed medication. These symptoms, predictably, decreased and virtually disappeared when the infection abated. For the last few days I recorded negligible fasciculations and zero cramping.

I jumped the gun at one stage and attempted a brief experiment with anti viral/anti parasitic supplements. Unfortunately, I had not recovered sufficiently and they simply made me feel worse (which I would not have thought possible at the time). I may repeat the experiment at some stage and will detail both the process and any results then.

No useful data were collected this month, only reconfirmation that viral and other stressors worsen my neurological symptoms. For now, I am simply convalescing, walking when I have the energy and looking forward to a more productive update next month.

Concentrating to read or write was virtually impossible, typing with one finger whilst restricted to lying sideways on a couch was also limiting and probably contributed to my neck problems. I am very aware that PALS constantly overcome dreadfully disabling circumstances so I include this information to explain rather than complain. I dealt with as much email and website "housekeeping" as possible but had to concede that this month I could add little, if anything to this study. I remained busy (it is virtually impossible for me to do otherwise) but have not been able to publish much new information on the website this month.

My spinal problems, although inoperable and disabling, are slowly improving. Rest, medication, more rest and (eventually) gentle exercise are the only prescribed treatment. I've experienced this condition before and may do so again but for now am simply coping and making the best of a temporarily bad situation. My general health was good and I walked, pain permitting. whenever I could. I am assuming this month's unavoidable brain fog will have cleared in time for the next update.

Fasciculations remained minimal with several consecutive fasciculation free days, many extremely low fasciculation days and only a few days of elevated fasciculations. The "bad " fasciculation days usually followed excessive exercise or occurred on waking in the morning but eased as the day progressed. In many respects this could be considered normal for me in recent years.

Extreme financial pressures caused a lot of stress this month. As you would be aware if you are familiar with this website, I believe stress to be extremely detrimental to health. Another negative outcome was being forced to abandon what I consider to be a healthy diet and subsist instead on "emergency rations" until we could afford to buy food again. With the help of friends we overcame that immediate problem so I am still around to write this!

Perhaps because of the dietary or medication changes I noted that I had a salt craving, particularly in the late evening. This was easily satisfied by slowly chewing a small portion of salted peanuts or a single slice of bacon. This has happened before but, even after all this time, I can only theorise as to why this occurs (none of the various explanations fit a firm pattern).

I am now walking and exercising as usual and about to pass yet another birthday milestone on the 25th of this month. I am hoping to add several dozen more birthdays to my collection before my demise. ;-)

My attempts to get treatment for the borrelia and babesia that were found in my blood several months ago have been unfruitful so far. Borreliosis (chronic Lyme disease) is considered a relatively "rare and exotic illness" in Australia so there is a four month waiting list to see the specialist, who remains difficult to contact to even make an appointment. The only way to accelerate the process is to pay many thousands of dollars for treatment at a private clinic - not an option at present. As I have probably been carrying the babesia and borrelia for over a decade, waiting a few more months for treatment is no great problem whilst my symptoms remain relatively stable. For the reasons explained in detail on My Theory page I hope to record a significant improvement if the babesia and borrelia can be eliminated from my body.

I shall include updates of any treatment I eventually receive for babesia and borrelia and record the outcome here.

Excessive exercise (a very subjective term) led to increased fasciculations and some cramping in addition to spinal and related nerve pain. I believe we all need to exercise as much as possible but am constantly reminded that the dividing line between healthy and excessive exercise (in my case) is extremely fine.

Despite widespread (low intensity) fasciculations and discomfort as I write this, the sense of achievement and my gratitude at being able to do the things that caused these problems somehow outweighs the unpleasant consequences. It seems that sometimes I now have to feel bad to feel good... I can clearly remember when the relatively simple activity that has caused my discomfort was impossible. I mention the consequences of my excesses here for the record only.

For me this was another month of extremes, for which I have no logical explanation. Fibromyalgic pain, spinal injury pain and a feeling of general malaise pervaded for most of this month. I remind myself that many PALS would be overjoyed to be able to feel anything at all, including pain. In that respect I am fortunate but after so many months of relentless pain, I must admit I'm probably less appreciative of the sensation than I should be. For months I have lurched from one physical problem, symptom, limitation or discomfort to the next. At times it became overwhelming and affected my mind as much as my body. Capitulating at times like these would be as easy as it would be disastrous. One's illness(es) could too easily become one's entire world. If PALS are to survive ALS/MND they must have a life, goals and aspirations - a future, beyond the illness.

There is a very real possibility that the "cure" for ALS/MND already exists in the form of available pharmaceuticals, supplements and regimens. I believed this the day I created the first pages of this website and to this day still believe it to be true.

This study has repeatedly been complicated by unexplained "viral" infections, inflammatory symptoms and other factors that would indicate that ALS/MND is more complex than medical textbooks would have us believe. Paradoxically, these inconsistencies may well ultimately provide the data needed to assemble a cure from readily available sources. With this in mind, I shall be focusing on lipid metabolisation and detoxification in the coming months. I have long believed that at least a partial answer may lie in this area. Perhaps it will be a useful part of the greater whole? I certainly hope so.

When my health had been stable for several days, I took the opportunity to reassess the efficacy of Coenzyme Q10 in my case. In the past, CoQ10 has caused increasingly widespread, low level fasciculations after several days. Precisely the same thing happened this time after taking 100mg CoQ10 daily for four days. As CoQ10 is beneficial to so many PALS it remains a mystery as to why it has this effect on me. The response is similar to symptoms experienced when I have taken an excessive dose of an antioxidant (several instances are recorded throughout this study). Perhaps it is an indication of how effective CoQ10 is as an antioxidant? Such anomalies can be highly instructive when viewed in a broader context, something I am now able to do after many years of consistent self-monitoring and research.

Fasciculations and other neurological symptoms were minimal this month but still intrusive enough to remind me that all is not entirely well with my body, despite my best efforts. This is an extremely subjective statement considering how extremely debilitated I have been in the past and even at the start of this month. I am thankful that my condition remains essentially stable and that I can still walk and manage to do the most basic day to day things that many PALS find so difficult.

Despite the ups and downs in my general health and pain levels, my research into a possible treatment for ALS/MND continues and I am finally starting to find partial answers to many of the questions I have been asking for several years. It is my sincere hope that 2004 will bring the breakthrough in medical research (mine or somebody else's - it is irrelevant who crosses the "finish line" first) that will lead to a cure.

Have a Prosperous, Happy and Healthy New Year!

I spoke to five people living within a two block radius of my home and they had all experienced upper respiratory infections after the onset of the seasonal hot, dusty weather. [It is believed that dust blown from the Sahara desert carried foot and mouth disease to the UK. West and NW of Goulburn (the direction of the prevailing wind) we have vast farmlands and beyond that thousands of kilometres of desert. There is also a large real estate development to the NW that sometimes produces a great deal of dust. SS]. Unfortunately, as the heat and dust increased so did the upper respiratory symptoms mentioned last month. The worst of us developed pneumonia. I was able to minimise but not entirely prevent these symptoms and was extremely uncomfortable and thoroughly exhausted for the latter part of this month. After three full courses of heavy duty antibiotics I am finally starting to improve. An awareness that I was not the only person who seemed to be suffering an apparent adverse reaction to the dust - and I do not doubt many more suffered the same symptoms - enabled me to simply concentrate on getting well. I do not believe the chest infection was necessarily related to the chronic neurological symptoms recorded and discussed in this study. Along with a spectacular rash on my limbs, hands and feet (diagnosed as allergic dermatitis - something I have never experienced before) it was another unfortunate diversion and minor setback that perhaps indicates, as before, that I have a compromised immune system.

It would be easy to extrapolate from my observations that a weak immune system may actually be a factor in slowing the progress of ALS/MND, as has occurred in my case. When I increase my immune response with supplements my neurological symptoms worsen. When I suffer a minor illness (eg a sore throat) and my immune system is stimulated, my neurological symptoms worsen. When I am very ill (eg pneumonia) my immune system is fully occupied and neurological symptoms remain unaffected. Other PALS have reported similar circumstances to me but I believe that clinical trials into the relevance of immune response have so far been fairly inconclusive. If you know of a definitive study that has implicated low/high immune system response with the progress of ALS/MND I would be extremely interested in hearing from you. shack@goulburn.net.au

I attempted to find the good side of the unpleasant circumstance (there invariably is one if you look hard enough) and decided that if I was to be stuck indoors feeling lousy I could experiment with my prescribed medications. [This is called titration, adjusting dose levels according to need and response, and was discussed and agreed with my doctor]. I succeeded in safely reducing some of my prescribed medications by 50% (on "good" days) and shall be attempting to maintain that lower dosage whenever possible. Although prescribed and necessary for my wellbeing, some of my medications are not kind to my liver and may even depress my natural immune response. If the latter is true, based on long term observation, it may be reasonable to expect a slight change of my neurological symptoms. Whenever I take immune boosting supplements my neurological symptoms worsen. Perhaps a slightly depressed immune system affords a certain level of protection? [To treat Rheumatoid Arthritis and Lupus, medications are prescribed to decrease immune response. SS]. I shall pay particularly close attention to this possibility in the coming weeks.

Despite the ongoing problems, my neurological symptoms remained "stable" overall, despite daily fluctuations. The only problem recorded was a persistent headache that worsened in the evenings (or even whilst I slept). This was probably a result of the neck and shoulder pain mentioned and tension resulting from the stress of simply surviving from day to day.