Motor neurone disease, amyotrophic lateral sclerosis
Amyotrophic lateral sclerosis (ALS) is relatively rare. 5% of cases have a familial cause but most are sporadic. We do not know what is the cause. In the condition the motor nerves in the spinal cord and brain become damaged and no longer work, leading to increasing paralysis and in most cases the outlook is poor (3 to 5 years). For this reason it is greatly feared, and the fact that it was named after a famous baseball player who people watched dying has made this worse.
We do know that cigarette smoking, possibly some agricultural toxins and metalwork toxins, work in the plastic industry and repetitive muscle activity may increase the risk. There is also great interest and inflammation and oxidation causing the disease, which affects the nerves and the mitochondria (energy factories) inside them.
Although for most people the outlook is grim, many have lived for much longer than expected (e.g. Stephen Hawking has had ALS for many years – although his quality of life cannot be described as great) but many others have lived long quality lives with the disease. As research becomes more successful, the outlook for patients with this condition is going to improve.
What your doctor can do
Currently there is only one drug Riluzole which has been shown to slow progression and improve survival in humans, and this is approved by the FDA. Its mode of action is still unknown.
Many other drugs have been tried but have not yet proved to be successful, including stem cell treatments, immune modifiers, but the still are a long way off.
What you can do
Lifestyle & diet
It does seem that oxidation, inflammation and toxins are the most likely cause of this condition, and so reducing all of these may slow the process down or even halt it.
1. Reduce the toxic load – cigarette smoking, drugs, alcohol, avoid pesticide exposure.
2. Try and avoid eating processed food, containing food additives, preservatives and MSG. Gluten has been shown in animals to cause inflammation in the brain and probably should be avoided), possibly processed dairy products (pasteurised milk, cheese etc.) should be avoided and raw milk used instead.
3. Eliminate sugar as much is possible as this does increase inflammation and oxidation.
4. Ketogenic diet – creates ketones which the brain can use for energy, it also promotes mitochondrial energy production and stabilises the membrane. (In mice studies acute a ketogenic diet slows the progression of ALS).
5. Eat lots of good oils (olive oil, flaxseed oil, pure omega-3 (fish) oil, nuts and seeds (not peanuts), and grapes and berries – the latter have a lot of antioxidant activity.
6. Avoid all drugs that could possibly make the situation worse, particularly statin drugs.
Although there have been no human studies using supplements, many animal studies particularly mice with ALS have shown potential benefit from a number of supplements. Provided they cause no harm, I would personally recommend that somebody with ALS should take these as either individually or together they could potentially be beneficial.
- Antioxidant supplements – this includes all the antioxidant vitamins (ACED) plus grapeseed extracts to reduce the inflammation and hopefully slow the process.
- Glutathione is also a powerful antioxidant in has other neurological effects, is poorly absorbed and usually taken as NAC ( N acetyl cysteine).
- Coenzyme Q 10 is a powerful antioxidant, and also essential for energy production inside the mitochondria, this is where the major problem is in ALS.
- Alpha lipoic acid – again another powerful antioxidant which enters the brain tissue.
- Acetyl N carnitine -helps in transporting fats into the mitochondria.
- Ginkgo biloba – this is an antioxidant and also helps protect the mitochondria and in mice prolongs life with ALS.
- Ginseng – in mice with the defect in the SOD gene (SOD is a powerful antioxidant made inside the cells), ginseng delays the onset of the disease.
- Calcium and magnesium – these may be helpful in contraction, relaxation and conduction within the nerves and muscles.
- Omega-3 fish oils – make certain that these are pure and are not contaminated with mercury and other toxins, and are essential oils for good nerve function.
- The gut/brain interaction – we are just beginning to realise the importance of the gut in many diseases, particularly with immune diseases and inflammation. Most of our immune cells are in the gut. Changing the microbiome (bacteria in the gut) can affect this, with antibiotics, and our diet. Therefore a good diet, and taking probiotics on a regular basis can bring the microbiome back towards normal.
- Resveretrol – trials in mice have shown that this can delay the onset of the disease and improve survival.
- Cannabis and cannabinoid oils – currently this is not possible in most countries, there is a little animal information suggesting they could be beneficial, but not enough to suggest breaking the law.
- Phyto nutrients – these are specific compounds found in some fruit and berries, which stimulate the production of NRF2 which leads to the creation of powerful antioxidants inside the cell (SOD, catalase, glutathione reductase) which may be more beneficial than taking antioxidants by mouth. Some nutritional supplements (the USANA cellsentials) contain these phyto nutrients.
- Curcumin – neurological disease is very uncommon in India, where they eat a lot of tumeric which contains curcumin. In animal studies it has been shown to have a powerful anti-inflammatory effect, and can protect the nerve myelin sheaths
Most people appreciate that a person with a positive outlook and happy disposition is much more likely to overcome a disease than those who turn their faces to the wall. When we consider that the atoms that make up our bodies are actually spinning energy particles (electrons, quarks, leptons, bosons, neutrinos….), then it is obvious that energy can affect our bodies.
Some therapies (Acupuncture, Reiki, Healing Touch…) address these directly, and there are many simple, safe and beneficial ways of improving the energy round out bodies. These include looking positively, forgiving events of the past, loving, hugging, meditation, listening to good uplifting music or TV programmes, Tai chi, hypnosis, massage, aroma therapy.
Accept the support and love of others. Studies have shown that positive thoughts, prayers, love and concern can travel around the world and lead to beneficial outcomes. We don’t understand it, but then there are many things we don’t understand. Just accept it as another implement in your recovery – possibly the most powerful tool.
Mind-body medicine can play a great part in this disease, I believe that Stephen Hawking gives an example on just how powerful this can be.
I'm quite certain with the research going on that a solution to this disease is not too far down the track, and therefore delaying and slowing the process is well worth doing. For people with family history, taking the preventative approach rather than waiting till the disease develops is also logical.
My recommendations would be to follow the dietary instructions as above, try and keep physically active but don't overdo it, and take at least the following supplements – a good multivitamin and multi mineral (USANA cellsentials which contain the phyto nutrients), grapeseed extract, omega-3 fish oils (pure), ginkgo, curcumin, resveretrol, probiotics, coenzyme Q 10, glutathione, alpha lipoic acid, acetyl N carnitine, and calcium and magnesium.