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CONTENTS In order of relevance My Study OPCs Diet Stress Talking to Doctors
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INTRODUCTORY STATEMENTS Until a cure can be found for ALS/MND I believe there may be medications and therapies that, if used in combination, could slow or even arrest the progress of the disease. "There are two ways to slide easily through life: to believe everything you hear or to doubt everything. Both ways save us from thinking."Alfred Korybski. "I do not pretend to know what ignorant men are sure of." Clarence Darrow (ALS) Amyotrophic Lateral Sclerosis or (MND) Motor Neurone Disease are referred to as ALS/MND. PALS is short for People (or a person) with ALS. I use UK English spelling throughout this site, hence "neurones" rather than "neurons" and reference to Motor Neurone Disease (MND) as well as Amyotrophic Lateral Sclerosis (ALS). When quoting overseas sources the original spelling is usually retained. Until a cure can be found for ALS/MND I believe there may be medications and therapies that, if used in combination, could slow or even arrest the progress of the disease, as has happened in my case. Three things happen in the course of ALS/MND: Motor neurones oxidise and die; muscles atrophy (waste away) and eventually cease to function; nerves and nerve connections may be damaged/impaired and need an opportunity or some form of stimulus to promote their regrowth. Medications and therapies already exist, or are being researched, that will slow or prevent oxidation of motor neurones, promote muscle growth and allow or promote nerve regrowth. Used in combination, several medications may achieve what a single medication cannot. This has been clearly demonstrated in AIDS therapy where complete remission has been achieved in near terminal patients by using a three or four part therapy. As molecular biology, gene manipulation, stem cell and other technologies progress it is inevitable that a cure for ALS/MND must be discovered. For most PALS, remission or slowing of the progress of their symptoms may provide sufficient time for a cure to be isolated, clinically tested and made available. Researchers state that: "Oxidative stress is a widespread phenomenon in the pathology of neurodegenerative diseases such as ... ALS. Neuronal cell death due to oxidative stress may causally contribute to the pathogeneses of these diseases. Therefore, neuroprotective antioxidants are considered to be a promising approach to slow down disease progression". As always, there are other studies that refute this statement but I question the accuracy and thoroughness of the contradictory studies I have read. Even if a cure were found today it may take several years for that cure to become widely available. I sincerely hope that the people who have ALS/MND today will still be able to benefit from such a cure. Every effort made to slow or arrest the progress of the disease may make this a realistic possibility rather than a dream. I trust the information on this website will help in some way. Before Choosing Supplements... Some vitamins and minerals cannot be properly metabolised if certain other vitamins or minerals are not present in sufficient quantities. Vitamin B3 is a good example: tryptophane requires Vitamins B1, B2, B6, Vitamin C, Magnesium, Zinc and Manganes to be converted to B3, so all of these are important for that synthesis. Taking a B3 supplement will not necessarily provide useful amounts of this vitamin unless other appropriate vitamins and minerals exist in sufficient quantities to metabolise it. Calcium is another example. Taking a calcium supplement or eating calcium rich food does not mean that your body automatically absorbs this nutrient. Interactions among nutrients can either help or hinder the absorption of other nutrients. You are more likely to metabolise calcium if you are also taking supplements that aid its absorption. These include lactose (milk protein), lysine, potassium, sodium bicarbonate, vitamin D, vitamin B6 and vitamin A. Beware of quick-fix or poorly researched options. For example, refined sugar can assist in metabolising calcium but causes loss of calcium excreted in urine! The calcium supplement calcium citrate is probably the most bioavailable of the calcium salts but can increase the undesirable absorption of aluminium (a known neurotoxin). Some people can obtain more calcium from dairy products than from supplements and taking calcium supplements with food can increase their absorption by 10%. Taking calcium in the evening is more effective than taking it in the morning. Dr Melvyn Werbach in his book "Foundations of Nutritional Medicine" explains numerous other ways in which simple calcium supplementation may fail or succeed according to the other foods and supplements taken in conjunction with calcium. Based on my own research, I question the advisability of PALS taking calcium supplements unless they are extremely deficient in this mineral. Although calcium is essential for neuronal communication, simple calcium supplementation will not necessarily improve nerve conductivity and may even cause problems for some individuals. Excessive calcium found in the spinal fluid of PALS tends to indicate that this essential neurotransmitter in excess may cause exitotoxicity, stressing and provoking motor neuron dysfunction or destruction. Generally speaking, medications and supplements used in an attempt to slow the progress of ALS/MND are best taken in combination with complementary supplements and usually at lower doses rather than very high doses of only one or two supplements. Taking the "mega doses" sometimes suggested for supplements will, logically, tend to create an imbalance in other areas. Taking large doses (5000mg) of plain vitamin E (alpha tocopherol) has been shown to deplete gamma tocopherol levels in the Central Nervous System (CNS). Taking a vitamin E Complex (including alpha, beta, gamma and delta tocopherols) can help prevent this. (Christen S., et al., Gamma-tocopherol traps mutagenic electrophiles such as NOx and complements alpha-tocopherol: Physiological implications. Proc. Natl. Acad. Sci. USA, vol 94, pp. 3217-3222, Apr 1997.) An article can be accessed at: http://www.pnas.org.
It is worth noting that whilst some minerals will directly affect the metabolisation of others and in increase in one will cause and imbalance or decrease in another, this sometimes only works in one direction.
In the diagram above note that Cadmium (Cd) influences Copper (Cu) and Copper influences Iron (Fe) but the reverse is not true. Excess Sodium (Na) may decrease Potassium (K) and vice verse. For a person with hypertension it would not be good to increase Sodium (Na) even if it is beneficial in ALS/MND. It may or may not be better to increase Potassium (K) thereby restoring sodium levels without taking potentially excessive amounts of sodium in food or as a supplement. Consider these things before taking any vitamin or mineral supplement. General Information on Antioxidants and ALS/MND After reading numerous research papers I noted that, with few exceptions, many article mentioned the deterioration or destruction of Motor Neurones due to oxidation. It seemed logical that if cell and neurone oxidation could be retarded then some of the progressive symptoms of ALS/MND might also be slowed down. Oxidation causes some metals to rust or corrode and can be observed when oxygen in the air fairly rapidly turns a slice of apple or banana brown. It is interesting to note that sprinkling the cut fruit with lemon or lime juice (naturally high in ascorbic acid - an antioxidant) will slow oxidation and prevent browning. I designed a relatively simple "self assessment" study to discover whether an antioxidant therapy may be of benefit to PALS. I would urge you to conduct your own self assessment (whatever approach you may take to treating your illness) because, if results of a number of similar trials appear favourable, together they may provoke acceptance of the use of combined antioxidants or other "combined" approches to treating ALS/MND. See My Study for progress reports of my personal study and Conducting Your Own Self Assessment for suggestions on how to design and conduct your personal study. Even if you do not wish to conduct a "study" you may find it extremely useful to have a brief, daily record of your progress. The information you record in your own "health diary" may prove to be extremely useful in monitoring and treating your illness. A group of highly reactive substances known as Free Radicals are prime chemical attackers of our living cells. These toxic substances may be created by an internal biochemical reaction or be in food, drinks and even the air we breathe. It is estimated that by age 40 our natural antioxidant level is at 50% and by age 60 to 70, it is down to around 5% to 10%. Some oxidants have a positive mission to accomplish in burning refuse matter but, directly or indirectly, via various bio-chemical detours, Free Radicals can disturb and oxidise otherwise healthy cells. Oxidation assists in life's energy production but, paradoxically, aging is partly the result of such oxidation. From around the age of 65, Motor Neurone cells die off at a faster rate as part of the "natural" aging process. A similar process can occur at a younger age and at an accelerated rate in people with ALS/MND. There is increasing "scientifically proven" evidence to support the proposal that taking antioxidant compounds will alleviate the symptoms of ALS/MND and there is a great deal of anecdotal and empirical evidence to indicate that antioxidants help to slow the progress of ALS/MND in many people (numerous doctors now routinely prescribe or recommend the use of antioxidants). This was not the case when I first published this website. It seems likely that a combination of antioxidants will prove most effective because one type often assists in the action of another. Several years after writing this paragraph I discovered that, among others, the neuroligist Dr David Perlmutter seems to agree. Studies using antioxidants to treat ALS mice are claimed to indicate that antioxidants will not slow the progress of ALS/MND. To the best of my knowledge a combination of antioxidants was not used in this research and the other supplements, diet changes required for antioxidants to effectively protect the central nervous system may not have been present in sufficient quantities. Standard scientific methodology and protocols do not allow for such broad based studies. They are exclusive and reductive, isolating one supplement or process at a time and observing results. For this reason I believe that studies claiming to prove that antioxidants are ineffective in treating ALS/MND are far from conclusive. Common and readily available substances that have an antioxidant effect include components of the vitamins A, C and E. Antioxidants occur naturally in the skins of many herbs, fruits, vegetables, nuts, oils, etc., as phenolics. As a rule of thumb, it has been suggested that dietary antioxidant compounds are most abundant in the more colourful fruits and vegetables. Ideally, freshly picked, organically grown, pesticide and chemical free produce eaten raw or lightly cooked will provide the best source of these vitamins and antioxidant compounds. All fruit and vegetables should be as fresh as possible - ironically, snap frozen vegetables are "fresher" than many fruit and vegetables sold in western style supermarkets. See Healthy Foods for more information. Other researchers have announced from animal and human trials that a vitamin E complex may slow the progression of ALS/MND see Antioxidants. Investigators found that the antioxidant slows muscle wasting in the early stages of the disease in mice with a genetic defect for an inherited form of the disease. Reporting in the journal Annals of Neurology, researchers also noted "some benefit from minute doses of the antioxidant selenium. Clinical trials are testing vitamin E and other antioxidants. In the meantime, many doctors are recommending their ALS/MND patients take a vitamin E complex" (source UPI Chicago). Dr. Carsten Hager (a long term ALS/MND survivor) published a report of apparently successful treatments of ALS, using 5000mg of vitamin E daily, in a regional German medical paper. "No patient experienced any adverse effects with the high doses. After approximately 3 months of therapy all patients had better appetite, increase in weight and consequently a definitely improved mood. Many doctors point to completely normal blood values, some pathological values normalised. Out of the cases evaluated l9 came to a standstill, 5 of these with a slight or temporary improvement." He cites a number of cases in which patients improved considerably or at least did not deteriorate over the next year. In all these cases, improvement became apparent after 6-8 months of vitamin E therapy. Some patients showed little or no improvement depending on the stage their illness had reached. Others later presented with worsening symptoms a year or more after the disease had stabilised or improved. This decline may be partially explained if the most common form of vitamin E - alpha tocopherol - was used alone. It is important that combined vitamin E compounds be used together and not just the alpha tocopherol normally sold as "Vitamin E" see Antioxidants. Research published in 2003 even suggests that vitamin E is possibly the least effective antioxidant in the treatment of neurodegeneration. If positive results have been achieved with the "least effective" anti oxidant then combined antioxidants will probably be even more effective. I researched many antioxidants and believe a grape seed and/or pine bark extract providing OPC to be one of the most effective antioxidants readily and affordably available worldwide. It has been shown to be fifty times more efficient at scavenging free radicals than vitamin E. OPC has not been recommended to specifically treat ALS/MND but it seems possible that an efficient antioxidant may well slow the progress of motor neurone destruction. There is some evidence that OPC, being an oily bioflavonoid, may cross the blood/brain barrier more readily than other common antioxidants. Following extensive clinical trials and it's application to other disorders and diseases in the last thirty years, OPCs appear to be "completely harmless". Initially I took 100mg of OPC (Nature's Sunshine HP Grape Seed extract) plus 600mg Allopurinol daily in addition to other prescribed medications (for a pre existing chronic spinal injury) and experienced no negative side effects. I reasoned at the time that if OPC was fifty times more efficient than vitamin E then 100mg of OPC should perform approximately the same function as 5000mg of vitamin E (1mg OPC = 50mg vitamin E, ergo 100mg OPC = 5000mg vitamin E). Many years of research have revealed that this is not necessarily the case as each antioxidant may work in a different way or may need another compound to assist its metabolisation or its ability to cross the blood/brain barrier, for example. Other people with ALS/MND from around the world have reported no adverse reactions to various brands of OPC products. This is hardly surprising as OPCs have been used for over forty years and are found in many common foods (e.g. red wine). There are many types of antioxidants, some produced by our own bodies, others obtained from our diet. As oxidation of Motor Neurones appears to occur more aggressively and rapidly in people with ALS/MND it is likely that supplementary doses of antioxidants, in the form of antioxidant vitamins, OPC or other products may be necessary to achieve the desired result. The most likely outcome from taking an antioxidant supplement would be a slowing or stabilisation of ALS/MND symptoms. Antioxidants alone, in any form are unlikely to "cure" ALS/MND but there is compelling evidence that they may assist in some way and are unlikely to cause harm if carefully monitored and not taken in excessive doses. As my personal antioxidant self assessment study has progressed I noted such obvious benefits from taking OPC that I temporarily added NAC (N-Acetylcysteine) during the second half of the study. NAC did not combine well with my prescription medications and other supplements. Feedback from PALS indicates that NAC may be of benefit in slowing the progress of ALS/MND in some cases. see Antioxidants and click on the other appropriate links throughout this website. Google for more information on Antioxidants and Free Radicals Further Background Information Research from the Massachusetts General Hospital in Boston has revealed that many cases of ALS/MND are caused by a deficiency of an enzyme that normally reduces the life span of free radicals in the central nervous system. This antioxidant enzyme, known as superoxide dismutase (SOD), has long been studied as a possible missing link in the biochemistry of cancer cells since it is known that SOD levels are highly diminished during malignancy. It has also been noted that SOD has been used to protect normal tissue from damage by ionising radiation and, by limiting the cellular damage caused by free radicals, SOD may be directly involved in the control of the aging process. The importance of the discovery of the relationship between deficiencies of SOD and ALS/MND confirms what scientists have long suspected: this and other degenerative diseases of the central nervous system may be related to an uncontrolled advanced rate of "aging". This fundamental understanding of the mechanism of tissue destruction in ALS/MND supports a program that enhances the body's ability to produce SOD or the use of other protective antioxidants to limit the life span of tissue-destroying free radicals. [Increased mitochondrial antioxidative activity or decreased oxygen free radical propagation prevent mutant SOD1-mediated motor neuron cell death and increase amyotrophic lateral sclerosis-like transgenic mouse survival. J Neurochem 2002 Feb;80(3):488-500: Liu R, Li B, Flanagan SW, Oberley LW, Gozal D, Qiu M.] Because SOD is a small protein molecule and broken down during the process of digestion, efforts to increase the body's SOD activity with oral supplementation of this enzyme has been difficult - although a bioavailable form of SOD may be available in the form of Prozyme . It may be possible to increase the body's SOD activity by supplying increased amounts of the raw materials necessary for its production. These nutrients include copper, zinc, and to a lesser extent, manganese. Some studies suggest that mutant SOD1, although damaged, may not have decreased antioxidant capacity in PALS. This contradicts earlier findings but, in isolation, does not appear to be entirely conclusive. At the University of Utah College of Medicine, researchers found that experimental animals given a diet deficient in copper demonstrated significantly decreased SOD activity in body tissues. In another study performed at the University of Wisconsin, supplementation of manganese in humans was found to significantly increase blood levels of SOD. My own research has led me to believe that liver function is linked and in some cases absolutely essential to the metabolisation of many of the medications and supplements mentioned on this website. I hope that research will ultimately establish that treatment of ALS/MND may prove in some ways to be dependent on adequate liver function. See my Liver Function page for further information. Please refer to the contents list at the upper left of this page for a list of pages in the order most likely to be helpful. Alphabetical Contents List
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