May 1st update: 1st Month April 2004
This first month of year eight was reasonably stable, with two exceptions.

Although feeling slightly unwell most days, my neurological symptoms were minimal. I have tried to think what could have happened to allow me to feel well for a day but I can find nothing out of the ordinary. The good news is that I have recorded what I would class as a "healthy" day - so now I know it's still possible! That is extremely heartening after all these years. Experiencing what it is like to not wake up in pain then hurt for most of the day, weak and lacking in energy, was a revelation. That's what life was like 20 years ago and that is what I am aiming to achieve in the future. It is ironic that I am writing this on a "bad" day but it is on days like this that one needs something to look forward to. The knowledge that the seemingly impossible is only improbable and that the improbable is occasionally possible is the sort of inspiration everybody needs

June 1st update: 2nd Month May 2004

CAT scans this month revealed that a chronic sinus infection is very likely the primary cause of my ongoing upper respiratory problems and also the frequently observed stress on my immune system. [This chronic inflammation of my sinus linings is almost certainly the result of a dust mite allergy]. In one sense this is good news because the problem can possibly be remedied surgically. I would be far more enthusiastic about this prospect had I not already experienced a similar operation some years ago. Despite rating the operation among the top ten most unpleasant experiences of my life, if it reduces the ongoing stress to my overworked immune system I shall readily agree to surgery if appropriate. Far worse things happen to PALS around the world every day and I shall bear that in mind as I sign the appropriate surgical paperwork...

After all the testing, retesting and waiting, I have discovered I am no closer to being treated for Borrelia (Lyme) and Babesia than I was 18 months ago. This is frustrating as it seems that I will need to attend a private (and impossibly expensive) clinic to receive the treatment that is currently recommended. As most Australian medical practitioners do not consider tick borne diseases to be a significant problem, nothing much can be done at present, although my own doctor is willing to treat me. I shall be pursuing this further but progress continues to be slow.

Unlike last month, I recorded widespread fasciculations most days. Most were low intensity but I experienced a few bad fasciculation days. This could be partly due to my ongoing upper respiratory infection, now explained but still not cured. I was fatigued and feeling generally unwell and some days was unable to exercise normally. My blood pressure has been high, which is perhaps consistent with how bad I felt. I have reduced the doses of my prescribed medications to the lowest effective level and have been experiencing the symptoms one could expect from taking insufficient medications. As I establish a new working dose, things should improve.

Some good news to finish: blood tests showed my best liver function results since the beginning of this study. Considering that prescribed medications and other health complications could have caused problems, this was a pleasant surprise. From this I can assume that my efforts to maintain good liver function are succeeding.

July 1st update: 3rd Month June 2004

I began taking antibiotics (erythromycine) for the chronic sinus infection mentioned last month but they did not improve my ear/nose/throat/chest symptoms. For the first time, taking these antibiotics did not seem to worsen my neurological symptoms or general health (bearing in mind that my general health was and is a little below par at the moment). I believe that the ENT specialist was "going through the motions" to assess if an operation was necessary and justify such an operation if the antibiotics did not work. The antibiotics did not work so surgery is indicated. My sinuses are too scarred and clogged with polyps to ever heal properly without surgical intervention.

Fasciculations returned to minimal in intensity, duration and distribution this month. I am sure that if I could understand why there are so many variations in this pattern it would tell me a lot about my neurological condition. It makes little sense that there should be fasciculation swings and that they should worsen or improve to such an extent without any observable cause. I have identified known stressors that worsen fasciculations but still cannot explain why fasciculations (and other neurological symptoms) should sporadically worsen. I've even considered moon phases, weather changes, etc. as possible influences - I'm not superstitious, just thorough. :-) Maybe I'll be able to solve the fasciculation conundrum one day.

In a similar vein, I had a marked improvement with my walking but it did not last. For a day or two I felt as if I was walking normally and was not tiring as I reached my usual "limit". This was a wonderful feeling but frustratingly temporary. Within a few days, cramping, fasciculations, weakness and unexplained muscle soreness limited me to walks of the type and duration I have been taking for the last few years. These brief glimpses at "what could be" are quite exciting and give me much to look forward to and I have to remind myself not to feel disappointed when they do not last. Maybe one day soon...?

Some progress this month with the chronic sinus infection that has been causing problems with my ears, nose, throat, chest and general health . Surgery seems to be the only solution to the problem. CAT scans of my sinuses reveal that they are all completely blocked and that any amount of medication will not improve the situation. My sinuses are scarred and clogged with polyps and will continue to cause ongoing secondary infections and stress my immune system until they are surgically cleared. It may be many more weeks before surgery can be scheduled.

Fasciculations were again low in intensity, duration and distribution this month but my general pain levels were excessive on many days. This restricted my mobility and I had to cancel many of my regular daily walks. These periods of increased pain are as difficult to predict and explain as increased fasciculations are when they occur. It is perplexing that after nearly ten years of keeping records the only obvious pattern to emerge is that there is no obvious pattern. There are numerous variables that could account for this but I have also recorded them as best I can.

I am still unable to receive treatment for a diagnosed Lyme/borrelia infection. As with the sinus surgery, I am at the mercy of the medical system. This is unfortunate and frustrating but not life threatening so I shall attempt to remain patient as the months of waiting mount up. I have learned that frustrating delays can sometimes work out for the best. I am sure all will be well in the eventually.

Although I am much improved as I write this, the first week of August was my worst on record for several years. Fasciculations were intense, widespread and of long duration (for one 24 hour period almost constant). Cramping and muscle weakness inevitably followed. This was almost certainly due to ongoing reactions to prescribed medications. I am no longer taking those particular medications but, as I require some kind of medication at the moment, the battle to find something that does not cause problems is ongoing. Non prescription alternatives have not helped to date but should start producing positive change in the long term. As with all "negative" responses to supplements and prescribed medications over the course of this study, useful comparative data may result from my experiences. By researching side effects of the medications and/or how they effect one's metabolism, some light may eventually be cast on the possible aetiology of ALS/MND. No opportunity is wasted...

I mention the following not to complain but because it is adversely impacting on the data I am gathering for this study. My long overdue sinus surgery is likely to be delayed for many more months, leaving me prone to repeated infections. Hospital funding and funding to most essential services has been reduced by our government to the point where many public institutions can barely function. Similarly, treatment for my chronic Lyme/Borrelia infection will simply not happen in Australia's current political climate. Other than firmly but politely writing to the government to draw attention to the widespread problems, which I do on a fairly regular basis, there is not much more I can do about the immediate situation. As this is not a political forum I shall spare you the details but, suffice to say, there is far more to my work than creating and maintaining this website.

I shall be celebrating yet another birthday on 25th September - a full decade after diagnosis. I'll attempt to continue to use my time wisely and constructively. :-)

Problems with prescribed medications featured again this month but I now have four weeks respite. No more new medications until I have a series of tests to isolate the problem(s). These will be completed in early November.

Every prescribed medication tried for the past few months either did not work or caused mild to severe side effects, the worst of which exacerbated my neurological symptoms. As in the previous few months, fasciculations, cramping and other symptoms varied according to the medications taken. Whether this was due to drug interaction, rare side effects, a combination of both or other factors was not established. I am definitely looking forward to "four weeks off" and hopefully an opportunity to recover from the past few months. Perhaps the problem requiring the prescribed medication can be dealt with by other means? We shall see.

Although recent months have been somewhat uncomfortable and even exasperating, the information I am gathering may be extremely useful. Occasionally, blood tests, etc. for one problem have unexpectedly revealed inconsistencies in another. With this new information I am able to compare data and revisit ideas and theories that I was unable to make progress with in the past. As many of the questions I have asked over the years have had no accepted medical answer, much of what I have learned and continue to learn often comes from surprising sources. In a situation where answers are few it is sometimes beneficial to have no preconceived questions because it leaves the door open for unexpected insights. I cannot yet claim to have experienced the eureka moment I have been expecting for the past decade but remain convinced that "seek and ye shall find" is more than a trite aphorism. Ultimately, no effort to find answers is wasted. It's is unimportant who finds the answer to ALS/MND but of immeasurable importance that we keep seeking that answer. At this point we may be only one question away from a cure.

Most of this month was almost free of neurological symptoms but my general pain levels were far above average. I tend to be in pain all the time, it is only a matter of degree. When prescribed medications cannot adequately control this pain it is extremely difficult to function at most levels. Concentration, memory, stamina - everything is affected by either the pain or the effects of the medications. It is not clear why the extent and levels of my pain suddenly become elevated and respond poorly to analgesic and anti inflammatory medications. Recurrent fibromyalgia is one explanation but as the aetiology of fibromyalgia is poorly understood that explanation is not particularly helpful. It does tend to support my theory that many of these "described but poorly understood" illnesses may have a common cause or sequence of causes.

Quite by accident (I had a localised allergic skin reaction to a chemical on my hand) I discovered that an antihistamine taken for the allergy coincided with a reduction in overall pain levels. Pain levels increased as soon as I stopped taking the antihistamine. It would be easy to jump to the conclusion that prolonged increases in pain levels, in the absence of other possible triggers, are histamine related. I have not jumped to this conclusion and have not noted that antihistamines reduced pain in the past but shall be exploring the possibility further. A reason for following this line of research is that when pain levels did decrease, widespread, low level fasciculations and cramping increased then gradually abated over the following days.

Some good news about my general health: my heart function is healthy and normal. The only abnormality is my inexplicably high blood pressure that has responded badly, or not at all, to all prescribed medications so far. Stress in the form of constant pain, financial problems, my wife's ill health and other factors may be the underlying cause but as these have been major problems for several years this seems to be an inadequate explanation. I mention this only because it has impacted on my results and ability to work for the past few months. Also, this is yet another illness that is "described, diagnosed yet poorly understood" for me to add to my growing list of personal health enigmas! As a result I have been researching the possible role of chronic inflammation in ALS/MND. I was hoping to include something about chronic inflammation here this month but the subject is more far reaching and contentious than I expected. I shall attempt to publish a relevant overview next month.

The last few days of this month were better than the rest of the month, which is a relief. Extreme pain and the resultant lack of sleep were wearing me down and prevented me from working on many occasions but I've survived it before and shall no doubt do so again, as necessary.

My sinus saga continues. I was at the top of a long waiting list for a sinus operation when the surgeon suddenly left town. I am now at the bottom of another specialist's long waiting list. This is only relevant because the chronic sinus infection causes secondary infections that sometimes deteriorate into pneumonia. Any infection stresses my immune system and interferes with my personal research records. I had to take four full courses of high dose antibiotics this month. The repercussions were predictable: impaired digestion and liver function were soon followed by worsening of neurological problems. Fasciculations became frequent and intense and after three weeks were starting to spread throughout my body. These decreased not long after I stopped taking the antibiotics, restored digestive function and reinstated my usual regimen.

Until I can have the increasingly overdue operation to relieve chronic sinus and resultant secondary infections, I will be using colloidal silver instead of prescribed antibiotics. This may have the added benefit of combating other chronic viral and bacterial infections that may be a contributing cause of neurodegeneration. This less aggressive approach to combating infections fits better with my general approach of treading gently and progressing gradually whilst keeping careful records. This type of observation is informative and valuable to my research and hopefully to ALS/MND research in general.

My neurological symptoms were extremely stable this month with only a few, mild and brief fasciculations and a little cramping. My general pain levels remained extremely high and were worsened when I had a stomach upset for a week or so and could not digest pain relief medications. Anti nausea medication (maxolon) helped to some extent by reducing both nausea and facilitating metabolisation of prescribed medications. I believe my stomach problems were an unavoidable outcome of the four courses of antibiotics I took in the previous month for sinus and secondary infections. Such powerful, broad spectrum antibiotics destroy beneficial digestive bacteria in addition to the bacteria causing illness. Probiotic supplements containing biffidus and acidophilus and lactobacillus helped to reestablish normal digestive function.

My sinus operation has finally been scheduled and the new surgeon has assured me that the repeated throat, ear, chest and lung infections that I have experienced in the last few years should cease soon after. This will enable me to accurately reestablish my original base levels for future research and supplement/medication evaluation. I am confident it will also increase my energy levels and improve my quality of life to some extent. I may even get my singing voice back!

With more stable general health I can more accurately assess the efficacy of potentially beneficial supplements and medications. So, 2004 ends with me living day to day (and somewhat hand to mouth) but looking forward to a better, healthier and less stressful 2005.