In order of relevance
I undertook a personal clinical study in 1997. Within a year I had recorded improvement and after two years recorded no worsening of neurological symptoms. As my personal study progressed I added my monthly total assessment scores and comments to this page to indicate how the study was progressing. I noticed a definite improvement in areas such as mobility and decreased pain plus and a reduction in fasciculation frequency and intensity.
This proved to be a long term effect that I consider permanent after ten years. For this reason I am no longer updating this study page monthly but shall continue to add pertinent information throughout the website.
I believe my improvement initially resulted from the supplements taken. This is how it worked for me but I am aware now that this regimen does not work equally for all PALS. The following information, although very encouraging, is provided for your information.
Based on vitamin E antioxidant data available 12 years ago, I was not expecting significant measurable results for up to six months, so I was both surprised and pleased with the improvement you will see recorded below.
I originally took Nature's Sunshine HP Grape Seed Extract to supply 100mg of OPC daily, allopurinol in the form of Zyloprim 600mg daily and NAC. I later discontinued allopurinol and NAC because of their negative side effects in my case. Information on these and other antioxidants.
My base-level monthly score, prior to taking any OPC, allopurinol or NAC, totalled 1772 for a thirty day period based on fifteen criteria, each scored from 1-10 (1 = good/nothing/nil or none. 10 = worst possible/incapacitated/maximum.
Information on the 1-10 self assessment rating system ).
Although there are ten years of study data here I believe you will find the first and second phase results, below, to be the most helpful. The other eight years can also be accessed from this page.
I would like to thank Nature's Sunshine Products of Australia Pty. Ltd, and in particular Mr Stephen Webster and Ms Robyn McInness for sponsoring me and supplying Nature's Sunshine HP Grape Seed Extract and the other high quality vitamins, minerals, herbs and naturopathic products made by that company and used in this research project.
Nature's Sunshine has branches in many countries. See the Nature's Sunshine website to contact them and for details of their extensive range of products. In Australia 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.
1st Month - April 1st 1997. For my first month, (gradually increasing the allopurinol dose from 100mg to 600mg daily) I recorded 1348 - a totally unexpected "improvement" of over 24% on my base level score of 1772. As I increased the allopurinol dose I noted slight symptoms of headache/thick headedness (a common side effect). These symptoms passed in a day or two. After stabilising at 600mg allopurinol daily I now experience no "headaches" that could be attributed to allopurinol.
2nd Month - May 1st 1997. Figures for the second month are 1123 - an improvement of 37% over the base level figure of 1772. Some individual monthly ratings/scores, such as fasciculation intensity, have improved by 50%. Percentage improvements may well be slightly higher throughout the study after daily scoring anomalies (due to illness, accidents, etc) have been taken in to consideration.
I am continuing to take prescribed medications for ALS/MND, such as Baclofen and Valium to control fasciculations and cramping. I also take a number of drugs to control pain and inflammation from a pre-existing, disabling spinal injury.
The OPC and allopurinol do not conflict with these medications and I have found that on "good days" I have been able to halve or even skip doses of anti inflammatories and analgesics. This is a most welcome and unexpected positive side effect. My "depression/stress" score has been consistently low and my "wellbeing" rating is greatly improved over my base level scores.
3rd Month June 1st 1997. I have recorded an improvement of 47% overall. (Base level figure 1772 - third month 935). I have been able to permanently halve my daily doses of anti inflammatories and analgesics as a direct but unpredicted side effect of the study. I still have the occasional "bad day" but the ratio of good to bad days has virtually reversed in three months. I have also reduced the frequency of Baclofen doses and am looking forward to also reducing dose levels soon.
Fasciculations were a major and troublesome symptom prior to the commencement of this study and I have recorded days with virtually NO fasciculations at all. The only reason I recorded any fasciculation scores on certain days was usually due to extremely brief, minor and isolated twitches that would have probably gone unnoticed if I were not diligently recording all changes and symptoms, however minor.
For the first time in three years I have had no major headache for a month and a half. These headaches typically resulted from cramping and fasciculations in my neck and shoulders (particularly left side). Although shoulder/neck pain was not entirely absent it never reached levels high enough to provoke, typically severe, headaches.
4th Month July 1st 1997. A frustrating month despite the 47% improvement over the baseline figure of 1772 down to 933. Daily records were influenced by a recurring flu-like virus (which has also afflicted family and friends) that caused both food and medication to pass through my system too rapidly to be properly digested. Sore throat, mild head cold, etc. negatively influenced my "wellbeing" score and the poor digestion of medications led to a (surprisingly minor) negative increase in other categories.
This coincided with halving my daily baclofen dose and frequently reducing my analgesics and anti inflammatories to one quarter of the dose I have been taking for nearly two years. It is hard to determine precisely if the effects of the virus or the reduction in medication increased some scores. The good news is that I am now taking half, or less than half, of all my prescribed medications with no negative side effects.
My leg strength has remained poor but essentially stable throughout the study. As I can only improve this score by strengthening the wasted muscles I have begun a mild exercise routine whenever possible. This would have been impossible at the start of this study. Even short, assisted walks led to fasciculations and sometimes cramping during and after the walk.
If I over exercised the fasciculation/cramping cycle thus induced could continue for days. This no longer happens. Although over-exercising can still induce fasciculations they are relatively brief & mild compared to four months ago. Residual long term, exercise induced, fasciculation and cramping has been minimal.
To sum up: Despite the virus, I have continued to improve this month. I am taking far less prescribed medication with no quantifiable negative results and am hoping to be able to strengthen weakened muscles through regular, mild exercise for the first time in nearly two years. Two and a half months have now passed without the overwhelming headaches described last month. General health permitting, positive progress made this month should be clearly and unequivocally confirmed by next month's figures.
5th Month August 1st 1997. This has been a pivotal month in my study. I have progressed from my base level figure of 1772 to 868 (a 51% improvement) but the figures reveal only part of the story.
Responding to research information on various recommended therapeutic doses of OPC, I increased my daily intake of OPC from 100mg to 200mg per day. I had intended to continue increasing the dose to 300mg daily as recommended by some OPC manufacturers. If you have ALS/MND I would suggest, from my experience, that you take care.
Based on my negative reaction to an increased OPC dose I would caution that for ALS/MND treatment, OPC at the rate of approximately 1mg per kilogram bodyweight would appear to be sufficient. Exceeding this dose rate produced minor but increasingly frequent and extensive fasciculations. These rabbity twitches and blips were annoying enough to make me question the advisability of increasing my OPC dosage rate.
After three weeks I was quite convinced that exceeding the approximate 1mg:1kg dose ratio could possibly be detrimental in some cases. After reducing my daily OPC intake back to 100mg daily, the fasciculation extent and frequency diminished. Feedback, research and manufacturer's claims from overseas that "more is better" did not apply in my case, despite claims from other people with ALS/MND that doses up to and exceeding 300mg daily were proving beneficial.
[My belief, based on research, observation and personal experience is that "mega doses" of vitamins, supplements and medications are generally only required where other therapeutic elements are lacking. Although it has not been scientifically proven, I believe that (for example) 5000mg of a given supplement may succeed through sheer "weight of numbers". Ergo, 4800mg of a 5000mg supplement may be required to "force" a moderate therapeutic dose of 200mg through (say, the blood brain barrier).
A more conservative 200mg dosage may well succeed if combined with one or more complimentary or catalytic substances. Most claims for higher dose rates of OPC have come from people NOT taking OPC in combination with Allopurinol or other strong antioxidants].
Because of the unexpected success of my study to date I hope to include NAC (N-Acetylcysteine) throughout the second half of this study (commencing in the seventh month) Click here for information about NAC. This may enable me to reduce allopurinol and OPC doses or conversely prove to be of no therapeutic value whatsoever *in my case*. I would like to stress again that the results and data presented here are for your information only and that nothing should be inferred from them until the study is complete (May 1998) and ALL data accrued have been analysed.
6th Month September 1st 1997. And I have reached the halfway stage. This month's score of 863 is 51% better than my base level score of 1772. This is slightly lower than last month but is due to a flu like upper respiratory tract infection contracted towards the end of the month (which reached epidemic proportions in the town where I live and was mentioned in the 4th month) thereby effecting my study results. Taking this into account, my average daily scores were essentially the same as last month.
My walking is improving although weak leg muscles still tire fairly rapidly. The quality of my walking has improved dramatically but I expect stamina will only increase as long-underused muscles gradually strengthen. My obvious overall improvement has been noted, not just in my study results, but by friends and acquaintances who have not seen me for several months.
Although this is a brief report of my general progress I will need to mention here my findings over eighteen months regarding liver function and its possible influence on ALS/MND (click here for Information on Liver Function).
I have a regular blood test to monitor liver function and other factors as this study progresses. From the many articles and papers I have read I was able to predict that liver function may be affected by the medications (OPC, allopurinol & NAC) I had selected to use in this study. My liver function had been poor for many years and was only stabilised in the year prior to this study by taking the naturopathic supplements Silymarin and Burdock
[n.b. I recommend that you have a naturopath prescribe and monitor these medications if blood tests show, or you suspect, poor liver function].
My liver had been stressed by many years of taking analgesics, anti-inflammatories, etc. prescribed for a chronic spinal injury. My liver function had been slowly but steadily deteriorating throughout the study (but not to a dangerous degree). One explanation was that the allopurinol, which lowers uric acid levels, was placing an extra burden on my liver/kidneys.
In order to test this theory I elected to reduce allopurinol levels from 600mg to 300mg daily for this month and compare the liver function figures after a month at this lower dose.
[Blood tests showed improved liver function after lowering allopurinol dosage but, inexplicably, remained stable after again increasing the dose to 600mg. Later blood tests also confirmed that uric acid levels remained stable whilst consistently taking 600mg of allopurinol].
For a few days, whilst reducing the allopurinol dose, I had increased shoulder and neck pain leading to "mid range" headaches. This abated as my system adjusted but I have noted that fasciculations have increased *sporadically* in extent and frequency. Intensity is still low. It is difficult to tell if the minor increase in fasciculations is due to reduced allopurinol or increased muscle usage now that I am generally more active. I hope to be able to confirm this, either way, in the coming months.
Prior to this study, when I undertook even relatively minor activity it could provoke quite violent, long lasting and extensive fasciculations and cramping, even whilst on much higher doses of baclofen, valium and endone.
To sum up: I am astonished at my overall improvement in six months. Although far from being "cured", life is far more bearable and I am able to enjoy some light gardening and other activities not possible prior to the study. Next month I will add NAC to my medication starting at 500mg daily and possibly increasing up to 1500mg. I will attempt to establish a minimum dose level *in my case*. As liver function may have a bearing on metabolisation of the NAC there are a few complicating factors at present that I hope to resolve and report on within the next few weeks
7th Month October 1st 1997. This was the most disappointing yet potentially the most enlightening month of the study so far. The assessment total for this month was 901 - 49% better than the base level figure of 1772.
The upper respiratory infection that I developed towards the end of last month evolved into serious influenza. I took two full courses of antibiotics and other medications and recorded that whilst I had influenza the extent, intensity and frequency of fasciculations increased. Did the virus overtax my immune system and increase the symptoms of the ALS/MND or did the antibiotics negate or react with the OPC and Allopurinol?
I noted that when I stopped taking antibiotics my daily totals rapidly improved although the influenza was still slightly evident. If symptoms can so easily be exacerbated by reasonably compatible medications or a common viral infection the questions raised this month may eventually lead to a better understanding of how ALS/MND progresses.
[Several PALS have responded to say that their ALS/MND symptoms worsened whilst they had colds and flu.]
To commence with the NAC as planned whilst taking antibiotics and other medications (and being in such poor general health) would have complicated and possibly invalidated any results noted. Most assessment scores were higher (worse) during the first part of the month but returned to a lower and more stable level during the last ten days. The overall findings this month may prove to be extremely valuable when finally assessed.
On the 21st day of this month I started taking 500mg of NAC on an empty stomach immediately on waking in the morning. In the ten days since starting NAC I noted a slight increase in the incidence of brief, minor, random fasciculations but these have been reduced by taking NAC in the morning and reducing my OPC dose to one 50mg capsule at night.
There have been no other negative side effects. As there is no existing information on precisely the best combined dosage of OPC, NAC and Allopurinol I will be adjusting and noting the effects of varying dose rates of NAC and OPC throughout next months.
Now that I have recovered from the flu I have noted a continued improvement in walking and, although I still tire fairly quickly, I recover more rapidly than a few months ago. More frequently, I can walk on flat surfaces without my stick and now use it more for balance than support. My overall wellbeing and quality of life remains improved and, other than muscle weakness, most of the more troublesome and debilitating symptoms are reduced.
8th Month November 1st 1997. Another tough but productive month. Because of my increasing conviction that liver function may be implicated in the rate of progress of ALS/MND I elected to stop taking Non Steroidal Anti Inflammatories Drugs (NSAIDs) for the first time in nine years. This was only possible due to the anti inflammatory action of the antioxidants. "Withdrawal" symptoms were painful and uncomfortable and left me shaken for several days but I have now succeeded in removing one of the major contributors to my poor liver function of the past few years.
[I was taking NSAIDs and other medications to combat pain and inflammation from a pre-existing chronic spinal injury].
The total for this month is 825 compared to the base level starting score of 1772 - still showing an improvement overall of 53%. I am particularly pleased with my progress when last month's virus and the reaction to this month's withdrawal of medication are factored out.
I can now walk on flat ground without a stick (short distances); I don't lean on furniture and fixtures to get around the house; I now use a supermarket basket/trolley as a balancing aid rather than for physical support; my walking stick is used mainly for balance on uneven terrain; my range of movement and walking posture (especially on stairs) has improved markedly. I don't have to cling for dear life to the handrail when descending stairs. Best of all - I don't suffer from terrible fasciculations and cramping for hours after activity unless I really overdo things. They are all the plusses.
I am still finding it difficult to increase muscle bulk; still lack stamina so can't walk long distances or at high speeds. I must concentrate on balance at all times. Any improvement in walking has plateaued for several months now. My left arm and hand are still weak but not worsening. Still far from "normal" but significantly improved.
This month I have found it difficult to assess an accurate, effective combined dose for OPC, NAC and Allopurinol. I have established that OPC doses greater than 1mg per kg bodyweight tends to induce low intensity, brief but more extensive fasciculations. Higher doses of NAC seem to produce a similar effect but, now that I have stopped taking NSAIDs, I hope that I can decrease combined doses of OPC, NAC and Allopurinol to attain similar or possibly better results.
I shall continue to experimenting with dosage levels for another month. Another small but potentially beneficial change this month has been that I now drink a minimum of ten glasses of water per day in addition to black tea and fruit juice. I will aim to increase my water intake further.
[See "Water" on Possible Medications and Therapies pages].
At this stage of the study I remain stable, improved and confident that I am progressing well.
9th Month December 1st 1997. Overall, a fairly stable month but one during which I concentrated on attempting to establish an effective yet minimum dose rate for OPC and NAC (Allopurinol remained unchanged at 600mg daily). My total for the month was 840, an improvement of 53% over my base level total of 1772. Only three "bad" days recorded and each attributable to prior excessive exercise or activity.
As with OPC, I noted that gradually increasing NAC doses (to 1000mg daily) produced low level but more extensive and frequent fasciculations. The more NAC I took the more frequent and extensive the fasciculations became. Reducing NAC reversed this pattern. At the end of this ninth month I am taking only 250mg NAC and 50mg of OPC daily. In combination they seem to achieve the same outcome as 100mg OPC with allopurinol. I should be able to verify this within the next few weeks.
It would seem that, beyond reasonable doubt *in my case*, OPC, NAC and Allopurinol have a measurable effect on my Central Nervous System (CNS) and that "more is NOT better". Careful balance and personal monitoring are required to achieve positive therapeutic results when using these antioxidants in combination. Either directly or indirectly, the antioxidants are influencing my CNS function - at this stage positively. Minor negative side effects were noted only when I used what I now know to be excessive doses for my metabolic needs.
My increased water consumption seems to be beneficial. I recorded no new symptoms or deterioration this month. Muscle strength and walking remain the same. I am still limited as to distance walked and stamina but range of movement remains good and I am still taking reduced amounts of prescribed medications with no ill effects.
10th month January 1st 1998. I stopped using NAC this month. This was extremely disappointing but I had little choice. It is unfortunate that I am taking a variety of prescription medications as well as OPC and Allopurinol because It has been difficult to ascertain if NAC is conflicting with the prescribed medications or is simply inappropriate for me. Before making this decision I reduced or suspended OPC for varying periods, reduced allopurinol and gradually reduced NAC to only 250mg.
The outcome remained the same: NAC *in my case* seems to provoke low intensity but more frequent and extensive fasciculations. Other people taking NAC have not reported this to me, which is why I feel there may be a conflict between my other supplements/medications such as burdock or possibly Allopurinol (although I briefly discontinued OPC, I continued to take Allopurinol at half dose). NAC may well be a helpful antioxidant to use for ALS/MND and has been reported to help in other cases of neurodegeneration. [see NAC].
In the twenty days of this month I have not been taking OPC I have continued to note very low intensity, short duration, fasciculations. These are more frequent and widely distributed than three to seven months ago. I cannot explain this. They usually occur during rest after "excessive" exercise and, for some reason, for about 10-20 seconds on waking in the morning. I had attributed these minor fasciculations to the NAC and the varying doses of OPC and Allopurinol I was experimenting with during the previous period.
Hopefully, now that I am back to unchanging doses of of OPC and Allopurinol, these minor fasciculations will decrease to the levels initially reported in the 3rd month. As I have been unusually active this month (more frequent and longer walks, trips to doctors, minor social events, etc.) the extra activity may be provoking the increased fasciculations. I should know by the end of next month.
This month has been relatively stable and my total of 790 shows an overall improvement of 55% over my base figure of 1772.
11th Month February 1st 1998. Another good total of 823, or a 54% improvement over the base level figure of 1772, was attained this month despite an active 11 day vacation followed by a week of gastro enteritis. Throughout the vacation I more than doubled my normal daily activity pattern, which resulted in muscle pain but surprisingly little increase in fasciculation intensity or extent.
The enteritis was a result of unknowingly drinking 4litres/1+gallons of water daily that the city council (later) publicly announced should have been boiled before drinking, due to bacterial contamination. These two factors elevated my overall monthly total mainly by increasing pain, headaches, general health and wellbeing totals.
Because of associated problems mentioned in the sixth and seventh month of this study, I did not use antibiotics. Instead I chose to allow the fever and other symptoms of the enteritis to run their course and recovered rapidly after the fever broke.
I have doubled my daily walking distance during this last week without provoking excessive fasciculations and cramping. I believe that the rate at which I recovered from the illness, my general wellbeing and improved mobility are a direct result of my significantly improved liver function (tested and confirmed this month).
My muscle bulk remains unchanged and I still have brief periods of random, low intensity fasciculations for 10-30 seconds immediately on waking or when resting after exercise. [I have received several e-mails to say that other PALS also experience fasciculations on waking].
I now enter the final month of my study confident that Allopurinol and OPC, plus my increased water intake, have had a beneficial effect on my condition. I shall be writing a complete assessment of this first phase of my study and publish it on this website as soon as possible after the twelfth month.
12th Month March 1st 1998. Being the final month of phase one of my study I decided to "go for broke" - with astonishing results. Last month I doubled my daily walking distance, increased general activity and Range of Movement exercises.
This month I have easily quadrupled last month's targets. Initially I expected and suffered the consequences of increased exercise and recorded one of the worst days of resultant fasciculations since the start of this study. I persisted and, for reasons I am at a loss to adequately explain, I quite suddenly found that my symptoms (customarily fasciculations followed by cramping, pain, weakness and exhaustion) are further improved over previous month's.
My total for this month is 705, a 60% improvement over my base level score of 1772 in spite of recording some of the worst days since the beginning of this study in the first week of this month. I also recorded my first full 24hours completely free of fasciculations since the study started and several days on which only one or two extremely minor fasciculations prevented me recording additional fasciculation-free days.
The enigma of fasciculations occurring on waking was solved this month after I realised that I was fully hydrating whilst awake then "dehydrating" for eight hours whilst I slept. Drinking two glasses of water at bedtime meant that a bathroom visit was necessary during the night, after which I took the opportunity to drink more water.
The fasciculation on waking were absent after the first morning and have rarely been noted since. Realising that some people with ALS/MND may have difficulty getting up at night, I drank a sodium based "sports" drink in an attempt to "retain" water throughout the night but this did not work on the nights I tried this alternative.
I am convinced that combined antioxidant therapy, increased hydration and efforts to improve my liver function have not only stabilised my condition but improved it considerably. In Phase 2 of my study (commencing next month) I will be adding several more supplements throughout the year and assessing their efficacy *in my case*. Full details outlining supplements and dosages will be included in my Phase 2 study.
This time last year I was housebound and only able move around by shuffling between furniture and fixtures for support and balance: I now walk 2 kilometres (1.25 miles) daily over uneven and differing surfaces without the aid of a stick. I have returned the wheelchair loaned to me by the ALS/MND Association.
My general health and wellbeing are better than I can remember in several years. Muscle bulk in my right and left thighs has increased by 5cm and 4cm respectively and some leg and arm reflexes have improved. My left arm is marginally worse and, at this stage, responds poorly to exercise. I hope to improve on this during phase two.
People now greet me by saying how well I look rather than by enquiring how I am "coping". For me this study has been a tremendous success. I can only hope improvements are permanent and that others may benefit from following a similar antioxidant and liver function treatment.
As with any single case study it is important to point out that any improvement I have experienced may be temporary, spontaneous, unique to me or due to other, unknown, influences. However, other people replicating my study as best they can (given their different symptoms, ages and rates of onset) have started to report improvements or apparent stabilisation of their condition. As some of these people were more physically disabled when they started emulating my study, this is extremely encouraging.
I am not "cured" at the time of writing this. I still experience fasciculations although they are greatly reduced in intensity and duration. Muscle wasting is still visibly apparent, particularly in my left arm and leg. I am still weak and have yet to recover visibly discernible muscle bulk and strength. Muscle spasm/cramping and debilitating headaches are now extremely infrequent and, on the rare occasions they do occur, far less intense. I have been (quite unexpectedly) able reduce my prescribed medications for pre-existing injuries by about two thirds and have discontinued anti inflammatory medication entirely. My general health, quality of life and wellbeing are greatly improved.
My diagnosis was "slow, limb onset - possibly atypical ALS/MND" so the supplements and approach I have taken may be inappropriate for people with more aggressive forms of the disease. Until more people attempt to combine antioxidants and improve liver function, record their progress and share their findings with me, my study will remain an interesting hypothesis only.
As my intent has always been to provoke a full scale medical research project into the use of combined antioxidants and improving liver function in an attempt to slow or even stop the progress of ALS/MND, I can only suggest that the course of therapy I pursued appears unlikely to cause harm and may offer hope for many people who currently have none.
It would be wrong to make claims for the study that cannot be adequately substantiated. As I do not sell the antioxidants and the other supplements I have used, or profit from promoting them, I have no bias and can conceive of no reason to falsify results or mislead by implying benefits not recorded. I set out to investigate my hypothesis and was originally expecting, at best, to slow the progress of my illness slightly. My study results so far demonstrate that I have achieved this and more. I hope I have helped the ALS/MND community by sharing this information.
Most sincerely, Steven Shackel, JP. April 1998.
An ongoing study to assess the spossible benefits of combining
dietary supplements considered to be useful in treating neurological disorders.
Phase 1 of my study consisted primarily of adding Allopurinol and OPC to the medications and supplements I was already taking prior to the commencement of the study. As I had an existing disabling spinal injury prior to being diagnosed with a slow, limb onset (possibly atypical) form of ALS/MND I was taking numerous prescribed analgesic, anti inflammatory and other medications to control severe, chronic pain.
None of these medications helped relieve the symptoms of ALS/MND (although baclofen and valium did assist in reducing cramping and muscle spasms). One of the unexpected benefits of the first phase of this study was that I was able to drastically reduce most prescribed medications and completely cease taking others.
I expect less variation in monthly totals during Phase 2 and will be attempting to keep the monthly totals below my new base level total throughout the study. This will indicate that little or no worsening of symptoms has occurred in my case - if possible, this stabilisation of ALS/MND symptoms will indicate that antioxidant and liver function therapy may provide an interim treatment for some ALS/MND patients until a cure can be found.
Throughout Phase 2 I will continue to take Allopurinol and OPC as in Phase 1 and will be adding the supplements listed below. As opportunistic infections tended to influence my general health and could possibly have been responsible for temporarily exacerbating my recorded symptoms, I will be adding a slow release form of Vitamin C and the herbs Echinacea and Garlic to assist in prevention of infections.
As I gather an increasing body of evidence to support my hypothesis that liver function may be involved in the rate of progress of neuromuscular degeneration (see Liver Function for details) I am taking the herbs Burdock and Silybum, a Zinc complex and am drinking at least 4 litres/9 pints (frequently more) of filtered or purified water throughout the day and around 800ml/30oz most nights.
I shall be adding various supplements as this study progresses. See My Regimen for changes and updates. As part of this study is to establish effective dose rates, the doses listed below will be based initially on manufacturer's recommendations and increased, decreased or discontinued as the study progresses. Below is information on my regimen at this stage of the study.
Allopurinol (by doctor's prescription only) 300mg x twice daily
Nature's Sunshine Products Australia kindly donated:
I would like to thank Nature's Sunshine Products of Australia Pty. Ltd, and in particular Mr Stephen Webster for sponsoring me and supplying all the above Nature's Sunshine products to assist me in this second phase of my study.
To see the range of their products and contact them see the Nature's Sunshine's website They can be telephoned on (02) 9894-0111or 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.
I will need to buy a Vitamin E Complex and some other supplements from overseas as they are not readily available in Australia at this time. These will be added to the study as it progresses and as the meagre income from my disability pension permits. I still have no research funding although occasional small donations have been sent and have gone towards covering the costs of keeping this website online and my ongoing research.
Go back to phase 1
Go to year 1 . 2
I would like to sincerely thank Sieg and Mardi Drews
1st Month April 1st 1998. Establishing a base level figure was not particularly easy. The final month of my Phase 1 study was far from typical. Taking an average from the previous two months provided a base level total of 772, which I have rounded down to 770. The best possible score would be 450 (indicating no recorded ALS/MND symptoms in my case).
Even a "healthy" 46/47 year old might expect occasional aches and pains or general health fluctuation. Therefore, the primary objective of this second phase study will be to maintain the improvements achieved during Phase 1 whilst adding and subtracting supplements considered to be beneficial in the treatment of neurodegenerative disorders.
During the first week I started taking Echinacea, Garlic and a slow release vitamin C supplement in an attempt to prevent viral infections and illnesses experienced during Phase 1 of this study. There was no obvious negative reaction to the addition of these supplements so during the second week I added a vitamin B complex. Although a minor increase in the distribution of low level, infrequent fasciculations was initially recorded this eased after a few days. In the third week I added a Calcium/Magnesium supplement but recorded an increasing number of low level and widely distributed fasciculations.
The longer I took the Calcium/Magnesium supplement the worse the symptoms became so I discontinued it. The symptoms decreased within a few days. I am now researching possible causes for this adverse reaction and will report my findings later.
Despite a minor fall (due to a slippery surface and not attributable to muscle weakness) causing pulled neck and shoulder muscles and the negative reaction to the Calcium/Magnesium, my total for this month was stable and totaled 711 (still an 8% improvement). Please bear in mind that as I am now more active I now suffer exercise related ("healthy") muscle soreness from exercising long underused muscle groups. As the study progresses I expect this will decrease.
2nd Month May 1st 1998. This month included one of the most stressful periods in my life (wife very ill, brother hospitalised, lack of income, lack of sleep, etc.) and my primary symptoms, fasciculations, doubled and even tripled during the most stressful period. As my overall condition has improved so much, this month's total of 688 (a surprising 11% improvement) does not reflect the extent to which stress provoked rapid deterioration.
As life returned to "normal" my daily totals returned to the low levels recorded last month. I even achieved two full days with no symptoms at all. Doubling my Silymarin dose (see supplement list above) helped immensely. I also received feedback that another PALS recorded similar improvement after increasing his Silymarin dose.
Taking a calcium supplement appeared to worsen my symptoms last month and an answer as to why is provided in this statement: "Calcium is vital to many cellular functions, but its concentration must be tightly controlled. Too much can kill a cell. Reducing dietary calcium will not control excess calcium's entry into cells. Blood calcium levels stay the same, controlled by hormones that take calcium from the bones if dietary calcium is low".
It would seem that, unless dietary calcium is deficient, there is no benefit in taking a supplement and it may actually stress motor neurones. As the supplement I was taking also included magnesium and I have received feed back that magnesium supplements increased fasciculations in some PALS, this may also have contributed to my negative reaction to the calcium/magnesium supplement.
I finally have a supply of a vitamin E complex containing the four tocopherols and will start taking and recording the effects of this supplement next month. (see Vitamin E data by clicking here).
To sum up - avoid stress if you possibly can as I am now convinced that it negatively and quite markedly influences ALS/MND symptoms. I realise that this is far easier said than done (as in my case this month) but learn a relaxation technique, meditate or otherwise actively manage stress as best you can.
Mental attitude plays an extremely important role in many physiological functions (otherwise how could researchers possibly justify placebo testing in ALS/MND clinical trials!). A positive approach to your illness, a realistic belief that you may yet improve, or better still be cured, could well prove to be powerful medicine indeed.
3rd Month June 1st 1998. I added 1000iu vitamin E complex daily this month but have noted no changes as a result of this so far. As last month's stressful circumstances spilled over into this month and I was prescribed a temporary medication for a non ALS/MND related illness and experienced several "bad" days due to a minor medication incompatibility, I expected this month's total to be worse than last month's.
My total of 670 (a further improvement, now 13% better than my Phase Two base level total) was quite unexpected.
Although I have been in contact with numerous people with colds, flu and other winter illnesses (I'm writing this from the southern hemisphere, remember :-) I have been totally infection free. I am tentatively ascribing this to the garlic, echinacea and vitamin C combination I included as part of this phase two study to help prevent such illnesses.
I recorded another two days without ALS/MND symptoms during this month. On the whole my condition has remained extremely stable and would have to say that "no news is good news" this month.
4th Month July 1st 1998. This month was the antithesis of last month and so complicated that it is difficult to describe briefly.
At the beginning of the month I started to record a cluster of mild but fairly extensive fasciculations, particularly just prior to sleep. As the only major change I had made in the previous two months was the inclusion of 1000mg of vitamin E complex daily it seemed logical to stop taking this and record my response. No change so I stopped the vitamin B supplement too. Still nothing until I stopped taking Echinacea.
Within 24 hours I had developed a sore throat and chest. I can't remember ever being so relieved to have a sore throat. It provided an explanation of sorts for my lack of energy and unexplained minor but frequent and widespread fasciculations. My body had been attempting to fight a virus that was unable to "resolve" itself in any obvious way.
Most other people who appeared to have the same virus became extremely ill. The Echinacea, Garlic and vitamin C apparently helped limit, but not totally stop, development of viral symptoms in my case. From everything I know it made no sense that the vitamin E and B complexes could be causing problems. Apparently they were not.
Looking back over my records I noted that I have had a "crisis" of sorts every three months. In holistic medicine of various types, the concept of a "healing crisis" is widely recognised. Briefly, my understanding is that if the body is eventually able to expel toxins, as a result of the therapy or the regimen one has been following, there is a brief period during which one temporarily feels worse prior to improving. (A parallel in conventional medicine would be the Jarisch-Herxheimer reaction to certain antibiotics as they start to kill millions of pathogens).
My records confirm that this has so far happened four times in my case. [An acupuncturist mentioned that in Chinese medicine seasonal influences are taken into account and pointed out that my "bad" events occurred precisely two weeks after the summer and winter solstices and the equinoxes. Without inferring too much from this information it does at least show the precise timing of the "cycles" I had unknowingly recorded].
The last crash or crisis I recorded was during the final month of my Phase 1 study, after which there was a remarkable improvement in my walking and I seemed to improve exponentially for a few weeks. This month I recorded a similar circumstance. My general pain levels (which were at one time extreme) are now the best I can remember in many years. This is a tremendous bonus and because of my reduced general pain levels I elected to take less prescribed medication. This may have contributed to this month's (apparently negative) symptoms by adding a "withdrawal" effect to the overall picture.
Another positive aspect of this extremely complicated month has been the realisation that my greatest progress and advancement in understanding has inevitably followed the "bad" incidents recorded throughout this study. I am even more convinced that liver function is involved in the progress or slowing of my ALS/MND symptoms and I am responding accordingly. For the entire month I had been harbouring a virus that was, for reasons that are not clear, causing a fasciculation pattern such as I had not experienced for nearly a year. I have a theory as to what caused this but would rather wait until I have stronger supporting evidence before stating it here.
My total this month was 716, an apparent worsening of my condition if all the other factors are ignored (but still 7% better than my Phase 2 baseline figure of 770). In real terms I am no worse than last month and thoroughly relieved to have survived this month with a better understanding of my condition, my regimen and where I should be directing my research. I will restart vitamin E and the B complex during the coming month and attempt to make sense of what has occurred this month.
5th Month August 1st 1998. A frustrating clone of last month, as indicated by my barely improved total of 688 (12% better than my Phase 2 baseline but no significant improvement or worsening of ALS/MND). The influenza like virus effecting me and many people around me, ebbed and flowed throughout the month and refused to disappear completely.
The echinacea/garlic certainly minimized the severity of my viral symptoms compared to other people but did not kill the virus. It has been suggested that I should not have taken the echinacea consistently after infection as the virus, once established in the body, can develop a tolerance to the herb (although echinacea can be taken for several months as a prophylactic, initially inhibiting many infections).
This month of "marking time" effectively stopped me from using new supplement combinations or making other changes or significant progress with my study. Despite this, a promising number of possibilities were suggested by this month's research.
Several years ago, I questioned my neurologists about the possibility that ALS/MND could be triggered by "something like a herpes virus that remains dormant until the immune system is stressed". They agreed that this was quite possible but, at the time, there was no way to scientifically ascertain this. Unable to follow the "viral" line of inquiry further I later started to research liver function and the use of antioxidants to slow ALS/MND.
Research by Dr Darryl See and Dr Martina Berger, et al, using new technology, would tend to indicate that a viral "trigger" is now not only possible but quite likely. These researchers believe they may have found viruses that could be responsible for a number of illnesses, including ALS/MND and some of these viruses may be susceptible to certain antiviral medications used to treat herpes .
My own records have repeatedly shown that when my immune system is stressed my ALS/MND symptoms worsen. When the stressor (a virus this past two months) is eliminated or dormant, fasciculations and other symptoms decrease soon after. My worst days with the virus this month also coincided with my worst fasciculations (although they remain relatively minor compared to two years ago). This strengthens my resolve to maintain good liver function as the liver is an important factor in a healthy immune system.
As I still have viral symptoms at the time of writing and have been told that they could recur for several weeks more, I can only hope I will be able to add something relevant to this study next month.
6th Month September 1st 1998. The flu like virus of the past months was finally diagnosed as Epstein-Barr Virus (EBV, Glandular Fever/Mononeucleosis) after two full courses of a powerful antibiotic failed to help. EBV is rare after the age of 40 so it was the last thing considered. It explains a great deal because, among other things, EBV often attacks the liver and central nervous system.
There is no conventional treatment for EBV and the virus is just left to run its unpleasant course. Although my symptoms have been typical of the illness they have not been severe. I believe this can be attributed to my antioxidant and herbal supplements and the improved condition of my liver.
When my EBV symptoms increased or decreased so did my ALS/MND symptoms. I can't help but think that this adds even more weight to the idea that ALS/MND may be viral in origin. Whenever my immune system has been stressed I have recorded poorer scores throughout my study.
At the time of writing I only have a slightly sore throat and could now be over the worst of the EBV. I am taking a herbal mixture that may help kill the virus. As EBV is in the herpes "family" of viruses the herbal treatment may even impact on the ALS/MND (if it is viral in origin).
My fasciculation levels have remained low but the extent and frequency of fasciculations have remained slightly higher again this month. I am still walking daily, there is no apparent muscle loss or worsening of my ALS/MND symptoms as is clear from my total this month of 716 (like month 4, 7% improved over my phase 2 base level). This month I have discontinued two more prescribed medications that I have been taking for several years so, paradoxically (virus and ALS/MND aside) my general health is improving!
As EBV effects my liver function and nervous system I must concentrate on ridding myself of it once and for all, so next month I will be using "one off" treatments to address this. Knowing that another 6 months has passed with no further worsening of my ALS/MND symptoms is extremely encouraging. After recovering from EBV it is quite common for the immune system to be boosted for an extended period so, frustrating as this virus has been, it may yet lead to a positive outcome.
7th Month October 1st 1998. I started by excluding all supplements except those taken in phase 1 of my study (Allopurinol, OPC, Silymarin & Burdock) so that I could remove the possibility of allergy/reaction to supplements introduced in Phase 2.
As no conventional medication was available I tried various herbal and other supplements that may have helped clear my viral infection. So far nothing has helped much. Another month has passed and I still have some viral symptoms such as swollen glands, sore throat, mild fevers and tiredness. Results of blood tests are inconclusive (even contradictory) and more confusing than informative.
The only thing I can restate for certain is that when my viral symptoms worsen or improve so do my ALS/MND symptoms. I know this has been noted with Multiple Sclerosis and from e-mail I have received it seems to be quite common for many PALS. Although there is no hard data to support it, the relationship between immune system function/dysfunction and ALS/MND appears to be linked in some way so I will be following this possibility in my research.
As the month progressed I added, subtracted and recombined various supplements - far too complex to list here. Few conclusions can be drawn after only 31 days but it would seem that vitamin C and Zinc complex helped slightly and other supplements made no appreciable difference either way. I can only confirm this by continuing the process for another month. In the meantime I will attempt to overcome this virus or at least allow it to run its course - it seems I have little choice.
I am not substantially better or worse than this time last month (or the month before!) and my total of 737 (still 4% better than my baseline total for phase 2) reflects the viral rather than ALS/MND symptoms. I still walk at least 2km daily and, viral influenced fluctuations excluded, my ALS/MND symptoms are quite stable. In itself, this is good news and I can't help thinking that when I solve the enigma of my viral infection it may even lead to a better understanding of ALS/MND... I'm ever the optimist!
8th Month November 1st 1998. This month started and ended well. Symptoms of the Epstein-Barr Virus (EBV) I've been suffering from sometimes eased to a mildly rasping throat and slight lack of energy. At these times my ALS/MND symptoms also improved markedly. I recorded two days with no fasciculations at all and several days with fasciculations so slight that I only noticed them because I keep careful records. When, for no apparent reason, the EBV symptoms suddenly worsened in the middle of the month so did the fasciculations and feeling of muscle weakness.
This month I stopped taking Allopurinol. This was a big step but I am convinced that liver function and rate of ALS/MND progression are related and I have always known that Allopurinol stresses the liver. I reasoned that the combined antioxidants I am taking and improved liver function would compensate for Allopurinol's xanthine oxidase blocking effect, which essentially retards cell oxidation. I have noticed no ill effects after stopping the Allopurinol other than increased inflammatory pain effecting my spine and legs (from my pre-existing spinal injury). Even this inflammatory pain decreased when the EBV symptoms improved.
As all other options had failed to rid me of the EBV, I took 8 x 500mg Lysine tablets (4000mg), as recommended by some practitioners to improve immune system function and treat cold sores (herpes simplex/labialis) - EBV is also a type of herpes virus. I found that there was an improvement after 48 hours but that it did not last for more than a few days. Lower daily doses of Lysine did not help but a repeated 8 tablet dose again reduced symptoms after 48 hours.
The really encouraging thing was that my ALS/MND symptoms also improved. Various herpes viruses can "hide" in the nervous system and thereby remain unrecognized by the immune system. Shingles (herpes zoster) is an obvious example. In coming months I will be researching the possible involvement of herpes viruses in triggering ALS/MND because the "coincidence" of EBV and ALS/MND symptoms worsening or improving at the same time cannot be ignored. Having said that it would be wrong to infer too much at this stage with so little supporting data.
My total for this month is 698 or 10% better than my baseline score of 770. I still walk a minimum of 2km daily and my ALS/MND remains stable. By concentrating on liver function, hydration and using antioxidants I am holding my own. Perhaps this month's interesting discovery regarding Lysine will lead somewhere? I will certainly let you know in future updates.
9th Month December 1st 1998. As I write this I feel fine but have just endured one of the most changeable months of the entire study. One day was completely ALS/MND symptom free, several days were almost symptom free but the rest of the month included some of the worst fasciculations and muscle weakness recorded in a long time. These phases passed without any conscious intervention on my part. The inexplicable thing is why these negative and positive swings occurred. I made no dietary, prescribed or supplementary medication or other changes of any significance. My monthly total of 718 (7% better than my baseline score but 3% down on last month) reflects the aberrations in my general health more than any significant worsening of my ALS/MND. My physical condition is still essentially the same as this time last month.
Following last month's success with L-Lysine I discussed with my doctor the possibility of using more aggressive medication to combat the EBV virus that has been complicating this second phase of my study. The EBV symptoms had returned quite suddenly and we thought that, under the circumstances, an anti viral medication could be worth trying.
The medication seemed to have little effect one way or the other in the few days I took it so, in order to give myself a break from my voluntary "lab rat" duties over the Christmas holiday period, I decided to recommence the anti viral medication on the first day of the 10th month (January 1999) and will report on that experiment next month.
I would have preferred to end the year on a higher note but am happy to accept that my condition has not worsened, my strength and mobility are unchanged and, despite a few uncomfortable days this month, I am more than holding my own.
10th Month January 1st 1999. Under my doctor's supervision, I experimented with the anti viral medication Famvirthis month in an attempt to treat my ongoing EBV infection and also to make a preliminary assessment as to whether it may be beneficial in treating ALS/MND. I gradually increased the dose to 1500mg daily.
Initially there was a noticeable effect on my Central Nervous System which unfortunately manifested in a "thick", heavy sensation in my leg muscles and a feeling of general muscle weakness. These symptoms gradually decreased after ten days or so. An unusual side effect of taking Famvir was that it turned the coating on my tongue black, as if I had been eating liquorice. After a month of using Famvir I have noticed no appreciable difference in my condition.
[The black tongue coating is disappearing now I have discontinued the tablets. It was probably due to a reaction with one or more of my other supplements or medications but I have no idea which. I have received several e-mails from PALS who claim to be benefiting from long term use of anti viral medications (including Famvir) so I have not discounted the possibility that an anti viral medication may assist in treating some forms of ALS/MND.]
The good news early this month was that blood tests taken last month showed I was finally free of the Epstein Barr Virus: the bad news was that I still had most of the clinical symptoms of EBV! These include swollen glands, recurrent sore throat and flu like symptoms, night sweats and fatigue. The anti viral, Famvir, did nothing to diminish these symptoms so my doctor decided that it might be worth trying a powerful antibiotic to combat the sore throat and swollen glands. Two full courses of these just made me feel slightly nauseated and generally out of sorts but had little effect on the throat symptoms.
I will see a specialist in the near future to discover precisely what my immune system is attempting to fight off. It's a complete mystery at the moment.
Nature's Sunshine has kindly provided me with a supply of Astragalus to try next month (click here for details on Astragalus). This herb has antioxidant, anti viral, immune stimulating and other useful qualities that may be relevant to this study. I am hoping that it will boost my immune system and rid me of the unrelated and complicating symptoms I have been experiencing for so many months.
There is a possibility that long term use of Astragalus may also help (in combination with my other supplements) treat ALS/MND. This is pure conjecture! I have extrapolated from available research data but feel the herb is well worth trying.
My fasciculations, etc. were slightly more frequent but fairly minor and there were no major fluctuations in symptoms this month. My total was 703, which is 9% better than my base line figure of 770. Fatigue and aching leg muscles (a peculiar side effect of the combined antibiotic/antiviral medications) made walking uncomfortable on a few occasions but I still walked at least 2km most days.
This was a pretty uncomfortable month for me but I attribute it entirely to the side effects of the prescribed medications. Despite the seemingly endless complications with my general health, any ALS/MND symptoms remain unchanged for yet another month.
11th Month February 1st 1999. An eventful February during which I pushed my body to its limit yet still emerged relatively unscathed. I performed on two days at the Australian National Blues Music Festival. This is significant in that at the same time last year I was too weak and incapacitated to play more than one or two songs on the guitar, after which I would often suffer a bout of fasciculations and exacerbation of my symptoms for days afterwards.
This year I played two, one and a half hour, sets in oppressively hot temperatures, walked several kilometres around the festival site each day (in addition to my 2 kilometre morning walk) and suffered only the sort of tiredness one would expect from overworking long underused muscles.
Playing guitar and singing solo is a surprisingly draining and physically demanding activity. I can recall feeling tired after performances more than a decade ago when I was fit and healthy, so I couldn't be happier with this month's achievement.
The day following the festival I ached in places that I didn't know I had places but considering the hot conditions, my lack of physical conditioning and the relatively excessive activity (compared to my normal routine) I recovered well and fairly rapidly. The boost to my tragically low self esteem was like a magic elixir.
Musicians I admire complimented my performance, people asked for my CD (which I do not have - a project for 1999 perhaps?) a national DJ wanted to broadcast my music, promoters tried to book me for tours and so on. I've a long way to go before I can play regularly or tour but it was gratifying to be asked and quite overwhelming to realise that there is life after chronic illness!
I remain far from cured. The left side of my body is still weak, wasted muscles are not regenerating significantly and I still have fasciculations and occasional muscle spasms. The good thing is that my body is definitely functioning better than at this time last year (now that I have a very clear basis for comparison), fine motor skills are intact and weakened muscles are no weaker.
I took 12 x 400mg astragalus capsules daily for ten days but my body felt slightly stressed by this relatively large dose. I have noted this effect whenever I have "pushed" my liver (NAC and acupuncture focussing specifically on liver function produced a similar feeling of physical unease).
Because of the excesses and disruption to my routine caused by my involvement in the music festival I elected to recommence the astragalus capsules at a lower dose next month. Astragalus is a long term treatment so I will persevere until I find a suitable dose to suit my metabolism and will be better able to assess its efficacy within the next few months.
In order not to "waste" the two weeks during which I was not taking astragalus I started using Dr Hulda Clarke's "Zapper" and Parasite mix daily. At this early stage I have not observed any startling change in my condition so I will have to comment next month. My "viral" symptoms are greatly improved (perhaps thanks to the Zapper?).
To be fair to Dr Clarke, I am not able to follow the strict guidelines of her treatment precisely so this may be influencing the rate of any suggested therapeutic benefits. I have had feedback from PALS who claim that the zapper and suggested acompanying regimen has helped immensely and from others who have noted no discernible change in their condition. From a scientific point of view this is fairly meaningless as no controls have been applied, accurate data are lacking and comparisons are impossible. I mention it here for your information only.
A remarkably good month for me, all things considered. My total was 662 - 14% better than my baseline figure of 770. Next month I will have my annual physical examination. Until then, take heart in the knowledge that this month at least one PALS achieved a long time goal a full year after accepting that the goal would be physically impossible in this lifetime. Perhaps more of us will be able to report the same by this time next year? Nothing would please me more.
12th Month March 1st 1999. The month started well but, after three weeks respite, the "viral" symptoms returned as badly as ever with the accompanying fevers, night sweats, sore throat, swollen glands, aches and pains and so on. Symptoms varied from day to day and I managed two days with no fasciculations or other symptoms then, like flipping a switch, the following days got increasingly worse.
For a while I was thoroughly frustrated and quite depressed as this "virus" has essentially compromised much of the data collected in the second phase of this study. Some people seem to think that I have had an unusual number of "illnesses" this year when it has actually been a single persistent infection of dubious aetiology. My monthly total was 700 or 9 % better than my baseline of 770 but drop from last month, primarily due to non ALS/MND symptoms. That was the bad news...
The good news is that, at my annual physical examination, my doctor could find no significant signs of deterioration and some improvement in reflexes generally and muscle tone and bulk on the right side of my body. Muscle wasting in my left arm and leg is unchanged. My gait (walking) has markedly improved as has my general mobility.
There is a distinct possibility that my "viral" symptoms are not of viral origin at all so we are testing for possible mycoplasma infection. I have added information on Mycoplasma and will be adding to it as my research progresses. This area of inquiry is extremely encouraging and may tie together many of the loose ends of my research to date.
I hesitate to say more at this early stage but will keep you fully informed of any progress made in this area. There is nothing further to report this month on the effects of either the zapper or astragalus.
For the sake of consistency I shall be summarising this past twelve months and starting "Year Three" from next month. Monthly totals are now largely irrelevant as I have obviously remained stable, other than for the effects of the mystery infection. I will be maintaining accurate and annotated daily records and reporting significant changes but my approach during the coming years will be more flexible and informal and will enable me to freely explore more options and keep you informed of the outcomes.
In summarising data accrued from the preceding Phase Two study it must first be acknowledged that ALS/MND data gathered were compromised throughout much of this second phase by a chronic infection (thought to be viral, although this is now questionable) and that the infection also tended to dictate some of the supplements chosen for study as the year progressed.
Although the symptoms of the infection influenced much of the day to day data it may ultimately lead to a possible link between chronic systemic infections and the progress or even cause of some forms of neurodegeneration. Ascertaining this will comprise much of the research throughout the third year of this study, Phases One & Two were devoted primarily to recording the effect of using antioxidants and improving and maintaining good liver function in an attempt to slow the progress of neurodegeneration and muscle wasting associated with ALS/MND.
Maintaining good liver function included the use of herbal, vitamin and mineral supplements, increased hydration and some diet and lifestyle modification. See Liver Function and My Regimen for more information.
In addition to the daily numerical rating charts maintained throughout Phases One & Two I also kept brief notes pertaining to possible influential factors on atypical days. Examples of these would be long car journeys, visits to doctors, stressful, unusual or seasonal events (holidays, etc.), notable diet, routine or medication changes and so on. Matching daily totals with relevant annotations provided some unexpected insights into possible influences on the progress of ALS/MND other than those already provided for in the original study.
Diet and digestion proved to be far more relevant than I would have thought likely or even possible. I am not suggesting that diet alone could either cause or cure ALS/MND but a pattern became apparent whilst attempting to discover why my "viral" infection was not responding to accepted conventional and supplementary therapies. It was quite obvious that the worse the symptoms of the infection the worse became the fasciculations, muscle spasming and other symptoms I would recognise as pertaining to ALS/MND.
Equally apparent was the high incidence of "bad days" that coincided with sluggish digestion, or even minor stomach upsets or constipation. Bloating, bad breath, flatulence, coated tongue or an unpleasant taste in the mouth were symptomatic of poor digestion and, to an unexpected extent, worsening of neurological symptoms.
I identified certain foods that exacerbated my neurological symptoms. These included chocolate, cheese and other foods high in processed carbohydrates, sugar and/or fats. Good quality yoghurt containing bifidus, acidophilus and lactobacillus ("friendly" bacteria) was a dairy food that caused no problems and appeared to assist digestion, but only small quantities of milk, cream and cheese could be consumed without provoking a negative physiological response.
As no fastidious records were kept on food portions, combinations, timing of meals and so on, only a broad, and scientifically informal, overview has been recorded so I shall make no sweeping generalisations here. What was clearly observed was that certain foods and digestive disturbances usually provoked (or coincided with) increased negative neurological symptoms in my case.
My goal, two years ago when I started this clinical study, was to slow the progress of my ALS/MND symptoms. I have achieved this and more. It is possible that I may be approaching the point where I can explain why I have managed to achieve this.
The "negative" symptoms recorded this past year led me to investigate possible viral, bacterial and mycoplasma involvement in either triggering or promoting the process of neurodegeneration. I believe the next year will be pivotal as the form and direction of my research has gradually changed as I have accrued information and evaluated my ongoing observations.
My ALS/MND symptoms have not worsened in over a year. In some respects I am "healthier" and more mobile than I was a year ago. I walk at least 2km daily without assistance. Although I still experience the symptoms of a neurological illness this illness has stabilised in spite of the stress of a secondary (possibly related?) illness/infection and the added stresses of a pre-existing and painful physical disability and the constant financial and other burdens resulting from this.
The use of supplementary medications in the form of antioxidants, vitamins, minerals and herbs has undoubtedly helped improve and maintain my current physical condition. A positive attitude and a (realistic) belief that a cure may soon become available as researchers and PALS world-wide strive to understand ALS/MND, has also been a constant and significant factor in actively dealing with this illness.
Steven Shackel, April 1999
SUMMARY OF FINAL YEAR