CONTENTS






In order of relevance

Introduction

My Study
My Regimen
My Story
My Theory
My Advice
My Diagnosis
My Opinions

Mental Attitude
Self Healing

Frequently Asked Questions
Useful Links

Antioxidants
Antiox Articles

OPCs
Vitamins
Minerals & Aminos
Medications 

Diet
Liver Function
Healthy Foods 

Stress
Inspiration
Therapies
Treatments
Theories

Articles
Mycoplasma
Lyme Disease
Organophosphates

Talking to Doctors
Diagnosing ALS
Self Assessment

Acknowledgements

Steven Shackel

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MY REGIMEN


(ALS) Amyotrophic Lateral Sclerosis or (MND) Motor Neurone Disease

are referred to as ALS/MND. PALS is a person or persons with ALS.


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For over 18 years now I have experimented with various medications, supplements and herbs to treat the symptoms of ALS/MND.  I do not claim that my personal regimen will work for you.  I have tailored my supplements to meet my personal needs and have adjusted it as necessary.  It works for me but, as I consider "illness" and "dis-ease" to be a state of imbalance, the things that achieve and maintain balance for me may be insufficient or excessive or inappropriate for you.

This information is provided for your consideration only - and to save me repeatedly typing e-mails and explanations to the people who ask.

Please note: I have never taken Rilutek/Riluzole and would not choose to do so. See My Opinions for an explanation.

All the supplements listed below were kindly supplied for use in my clinical study by Nature's Sunshine Products of Australia They have branches in many countries and their website has details of their extensive range of quality products.

In Australia telephone (02) 9894-0111 or fax (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. Enquire about their products via the NSP website. N.B.Some of the products below, eg OPC/Grape Seed extract are no longer available from Nature's Sunshine but can be sourced from elsewhere.


In order of importance, each day throughout my study I was initially taking Nature's Sunshine's

1) * 700mg Silymarin/St Mary's Thistle - 2 x 175mg x twice daily
2) 1400mg Burdock Root (Arctium lappa) - 2 x 350mg x twice daily
3) * 100mg OPC (Grape Seed) - 1 x 50mg capsule x twice daily
4) High potency B complex capsule - 1 capsule daily
5) Zinc complex tablet - 1 tablet or capsule daily
6) 2000mg slow release Vitamin C - 1 x 1000mg tablet x twice daily.
7) 6000mg Flax Seed and/or Fish Oil (~2 teaspoons flaxseed/fish oil)
- 3 x 1000mg gel caps or one teaspoon x twice daily
8) 1000mg garlic - 1 x 500mg capsule x twice daily
9) 1000mg ginger - 1 x 500mg capsule x twice daily

I drink around 4 litres/8 pints clean water daily

Daily stretching, joint mobility exercises and walking - but NEVER excessive.

The above were the fundamental components of my regimen provided by Nature's Sunshine. If you wish to replicate the above regimen precisely you can still obtain similar supplements from other manufacturers.

In the last few years I have added and subtracted various supplements and medications, and will continue to do so, as required. The above numbered list is what I used throughout the ten years of my study and consider those supplements or later substitutes to be beneficial for me.  If I try something new and experience unwanted side effects I feel I can always safely return to the above combination and start again.

N.B. As Nature's Sunshine no longer make OPC/Grape Seed/Pinebark extract. I substituted their natural Coenzyme Q10 [CoQ10] from 2008 until that too was discontinued. They are no longer making Liv-Pro, which I used in my study to provide Silymarin/St Mary's Thistle and other herbs helpful for healthy liver function but they now make other similar liver-support capsules. Flax Seed Oil and Zinc complex has also been discontinued but Nature's Sunshine has often substituted other products for those it has discontinued. For example they make Silymarin, Dandelion root, Turmeric and Artichoke capsules, all of which can be taken alone or combined to improve or sustain good liver function and provide significant anti oxidants.

I believe that liver function must be adequate in order to facilitate efficient metabolisation of medications and excretion of toxins from the body.  Even if standard liver function blood tests appear normal the liver may be under a great deal of stress in people who have ALS/MND.  Every effort must be made to improve and maintain good liver function.

For more information see Liver Function

I have discovered that some of the supplements I take as part of my daily regimen or have experimented with have neuroprotective qualities in addition to the therapeutic effects for which I originally took them.

Silymarin, Turmeric and Globe Artichoke may also inhibit nitric oxide synthase damage in the brain and central nervous system. Garlic, Omega 3 fatty acids (fish and flax seed oils), gingko and low dose aspirin also have neuroprotective properties.

The combination of a Zinc complex and vitamin C help metabolise the B vitamins and also aid liver function and the activity of antioxidant compounds.

Vitamin C is a good antioxidant but is rapidly excreted, which is why I always use a "slow release" form of viatmin C.

Water intake is extremely important 
Alcohol, coffee and tea should be reduced or eliminated completely. Plain green or black tea and some herbal teas may be beneficial but plain water is definitely the best option. Please also see the Liver Function page and the Diet page on this website.

OPC, Silymarin, Turmeric, vitamins A, C & E are good antioxidants but OPC and Silymarin seem to cross the blood/brain barrier more easily than the A, C & E combinations usually sold as an "antioxidant complex". These combined A,C,E supplements frequently supply less than the therapeutic doses required to treat ALS/MND. 

CoEnzyme Q10 (or CoQ10) is being used widely to treat neurodegenerative illnesses. When I could no longer get OPC/Grapeseed from Nature's Sunshine I started using their CoQ10 and had good results combining that with my other supplements.

The standard antioxidant combinations are usually designed to provide levels of antioxidant vitamins to supplement the diets of relatively "healthy" people.  You need to establish the types of antioxidants you will use and adequate dosage levels according to your personal requirements. For example, many People with ALS (PALS) take 3000mg - 5000mg of vitamin E complex daily in addition to other antioxidants. 

Such large doses may not be necessary if the combination of antioxidants taken is appropriate. Combining  several antioxidants is almost certainly more beneficial than taking a large dose of one type only. Many antioxidants act synergistically and aid the metabolisation of other antioxidants and supplements.  Precisely which antioxidants you use must be your decision.

N.B. In the early stages of my study I took Allopurinol x 600mg daily. This initially worked but I felt that after the first 18 months the combination of other antioxidants I was taking was producing better results than the allopurinol.  Allopurinol has a negative side effect on liver function when taken long term and I had to weigh its antioxidant benefits against this drawback.  I would not take allopurinol if I started my study again.


Diet is important 
Avoid foods containing processed (bleached/whitened) sugars, other processed carbohydrates. Fats that are solid at room temperature (including animal fats, butter, cheese, margarine, etc.) can be difficult to metabolise, produce free radicals, stress the liver and therefore the central nervous system. They need not be completely excluded but do attempt to reduce them as much as possible. 

Cold pressed (extra virgin) olive oil is an excellent substitute for many fats.  Ordinary olive oil is a good second choice if extra virgin is not available. Fish and flax seed oils are "good" fats and supply essential fatty acids. Flax seed oil, for example, supplies useful amounts of omega 3 and omega 6 fatty acids.  Fish also supplies selenium. Oily, dark fleshed fish such as tuna, salmon, etc. are most beneficial.

Coconut Oil or coconut butter is now considered one of the best lipids (fats) for PALS to use for cooking and for other purposes.

Include highly coloured vegetables and fruits in your diet as often as possible.  Attempt to eat cruciferous vegetables such as cabbage, broccoli, cauliflower, etc. and garlic daily as they contain useful amounts of sulphur and other compounds that are good for liver function and the immune system. See Diet and Healthy Foods for more information.

DO NOT substitute sugar with artificial sweeteners!
If you look up the numerous negative side effects of Aspartame and most other artificial sweeteners on the internet I am confident you will never use artificial sweeteners or "diet" soft drinks/sodas again. Using sugar should also be avoided. Decrease it a step at a time.


A Word of Caution
"More" is not necessarily better. The correct combination of supplements at appropriate dosage levels will work far better than large doses of everything labelled "antioxidant". It is possible to take too much vitamin A (at high doses it can be toxic) and I found that excessive OPC (grape seed or pine bark extract) produced unpleasant side effects in my case.  At the appropriate dosage, OPC (100mg daily for me) proved to be extremely beneficial.


A Positive Mental Attitude is extremely important!
There may be some difficult times.  Never give up hope. Take each event one day at a time and deal with things as they arise as positively as possible. If even a day at a time is too much to cope with try one minute at a time, then ten minutes at a time, then an hour at a time and so on. When I feel that life is "out of control" I take it ten minutes at a time.  If I can cope for ten minutes I review that ten minutes and try to improve the next ten minutes. Generally, a few repetitions of this restores my positive mental attitude.


My Personal Reset Button
When a computer becomes overloaded with information or there is a software conflict and it "freezes", the solution is often to simply restart the computer. On some machinery there is a "reset" button that does much the same.

Sometimes one cannot help but be stressed by problems such as illness, financial difficulties, pain or simply frustration at your temporary inability to resolve the problems. When it becomes too much to deal with, create a mental "reset button". This may not make the problems go away immediately but it will help you re-establish an emotionally stable and positive base from which to view your life.

Rich or poor, sick or well, the best one can expect from life is to be fundamentally happy. I believe this is a matter of choice rather than circumstance. Rather than looking at what I cannot do I look at what I can do. I look at what I have and not what I lack. By taking this approach to everything in life I can hit my mental Reset Button to become "fundamentally happy" again.

PALS have one of the most frustrating and potentially disempowering illnesses. There is no "off switch" to make it go away as yet but I would suggest that we can all create our own Reset Button that will restart us in a basically happy state of mind, regardless of discomfort, frustration and any other unpleasant side effects of ALS/MND.

Being fundamentally happy is as good as it gets. Decisions made in this state of mind are likely to be clearer, more stable and certainly more coherent than those made whilst depressed, frustrated or just plain ill. Being ill has nothing whatsoever with being happy. Many wealthy, successful and extremely healthy people are unhappy.

Rather than, "I've had enough, I give in, I don't care", it's possible to take a broader view and think "If everything starts from here and now, what would I change, how would I change myself and how will I cope with those things I cannot change at the moment?" If being happy is the best it gets then that is the perfect place from which to view your life and make the necessary changes and decisions. My mental Reset Button is immensely helpful and I have used it several times a day in difficult times. Could you use a reset button in your life? Try it and see.


Do not become self obsessed!
For example, when you think " What about my family?" this is often a reflection of your own perceived failure to protect and care for them. By obsessing about the people, things and circumstances around you it is easy to fool yourself into believing that these are "selfless" thoughts. If you are totally honest you will find that you cannot separate "self" from the people and things in life that are important to you.

The last three words in the previous paragraph are a clear indicator of what I mean. Focussing on anything over which you apparently have no immediate or direct control is ultimately "self" destructive.  If you already consider that your body is "self destructing" because you have ALS/MND it is illogical that you should habitually fuel this process with self destructive thoughts and emotions.

When you become aware that you may be doing this you can use the "ten minute" assessment or "reset button" techniques described above to pull yourself and your approach to life back in line.


Avoid all forms of physical and mental stress
Do not exercise too hard or too long!  Stretch, exercise gently but do not attempt to build muscles.  This can come later, when you are well again. 

Never exercise to the point of exhaustion but DO exercise gently and frequently to the best of your ability. If you can't exercise your body exercise your mind. See Relaxation, Visualisation & Meditation.

The Brain Wellness Plan is a book that offers many dietary and supplementary medication suggestions.  This book may prove helpful if you are formulating your own regimen. I wish it had been available when I first started testing antioxidants and other supplements to treat ALS/MND. The information in the book would have saved me a great deal of time and research.  It can be ordered via the Internet from Kensington Books and from Amazon and similar websites.

Similarly, I would recommend The Liver Cleansing Diet  by Dr Sandra Cabot. It explains the relevance of good liver function and offers suggestions and diet menus to assist in improving liver function.

Of all the books on healthy diet that I have read, The New Glucose Revolution Subtitle: The Glycemic Index Solution for Optimum Health, by Prof Brand-Miller, et al is one of the best. Although particularly relevant to diabetics it is also applicable to those with neurodegenerative illnesses. Online information can be found at www.glycemicindex.com also see http://diabetes.about.com/library/mendosagi/nmendosagi.htm


I must mention that I had a pre-existing chronic and disabling spinal injury several years prior to any neurodegenerative symptoms attributable to ALS/MND. As a consequence of spinal and nerve root damage I have been juggling prescribed powerful analgesic and anti inflammatory medications for years in order to cope with the severe and constant pain associated with my earlier injuries.

I have not ignored these medications whilst conducting my study and am satisfied that they have played no significant role in affecting my symptoms either before or during the study.  If anything, these medications may have hindered my progress, definitely stressed my liver, impaired digestion and otherwise been detrimental to my general health.  Having said that, I must add that I could not function from day to day without them.

I have managed to minimise daily doses to a remarkable extent as a result of my current regimen but it is likely that I will need such medication until neuro-surgical and other techniques have improved to the stage where my damaged spine can be reconstructed.

See also My Diagnosis

I hope the information on this page and the rest of this website helps in some way and wish you success in treating ALS/MND.  People diagnosed with ALS/MND do get well.  Please remember this.  Also remember that medical science is advancing rapidly and a cure may be found at any time.  Do not give in to the illness.  Keep fighting it.


Alphabetical Contents List
| Introduction | Acknowledgements | Antioxidants |
|
Antioxidant Articles | Articles | Diagnosing ALS | Diet | F A Q |
| Healthy Foods | Inspiration | Liver Function | Lyme Disease |
|
Medications | Mental Attitude | Minerals & Aminos | My Advice |
| Mycoplasma | My Diagnosis | My Opinion | My Regimen | My Story |
| My Study | My Theory | OPCs | Organophosphates | Self Assessment |
|
Self Healing | Stress | Talking to Doctors | Theories | Therapies |
|
Treatments | Steven Shackel | Useful Links | Vitamins |
|
Home Page |