Tony Ember’s protocol for fighting
the symptoms and damage of MND/ALS
The aim of this protocol is to increase health and vitality, without creating a strain on the weakened body.
Most of the protocol is for good health universally and not specifically MND, but the approach to use for MND
is very special. MND is sometimes described as having multiple causes, so by improving various aspects of
the body’s health, greater capacity is available to fight MND.
Food
Gut health is a pillar in the fight against MND. The ideal is to have no gut issues like IBS and to have a
regular bowel movement. It is essential to eat food that does not cause bloating or indigestion or
constipation, diarrhoea; or to take supplements to improve theses compromises.
For example:
Avoid process foods.
High protein foods are recommended, vegetarian or meat eating, doesn’t matter as long as the
above criteria are met.
Dairy food is to be avoided due to generating mucous.
Food that is easily breathed into the wind pipe is to be avoided, i.e. cakes, crumbly food and
crackers.
Food that is easy to eat, doesn’t require much chewing is important
Walking is a great support for healthy bowel movement
Avoid anything that causes bloating, indigestion, constipation, diarrhoea, acid reflux, gas, etc.
Supplements
Melatonin: For Sleeping: is a synthetic hormone that doesn’t cause heaviness in the morning and
doesn’t cause difficulty breathing or heaviness breathing when sleeping.
NAC: For glutathione production: supports enzymes that neutralises man-made toxins and
supports healthy liver function. 1
Ashwagandha: Natural herb to nourish and relax the nervous system.
Cardio chelate with (edta): This treats the possibility of heavy metals in the body, it binds metal ions
in the arteries and veins through chelating, supports the increase in cellular glutathione
concentrations, which is important for increase in anti oxidant needs.
Vitamin C increased oxidation benefiting the immune and nervous system and in the reduction of
tiredness and fatigue.
Senokot gentle affective constipation relief, that does not increase saliva production as the liquid as
some of the anti constipation medicines does.
MST morphine: help respiratory without exacerbating MND.
Honey and water, organic and from your own area is ideal.
Probiotics: a good probiotic increases gut health.
Vitamin D: Improves muscle strength2
Chaga Tea: a medicinal fungus with powerful antioxidants, it is an adaptogen, it helps normalize
and balance body functions, stimulating the immune system and reducing inflammation, has the
highest rating in the ORAC scale of antioxidants
Cistus Tea: Very high antioxidants, boosts the immune system and eliminates microbes.
Hydrolysed Collagen: small amino acids that are used in rebuilding muscle and tissue, aids
digestion, weight gain and muscle tone3
Protein Powder: Find one that is broad and makes up for any absence in the diet, helps the body
stay healthier, supplying more energy without all the weighty work of digestion
Olive Leaf extract: Helps with oxidative stress, liver function and supports the immune system.It
contains Oleuropein, one of the primary compounds in olive leaf, has attracted attention since the
1 https://www.ncbi.nlm.nih.gov/pubmed/10943709
2 https://www.ncbi.nlm.nih.gov/pubmed/27379960
3 https://www.ncbi.nlm.nih.gov/pubmed/31859087
early 1900s because of its antiviral, antibacterial and antifungal properties.4
Ginger
Note:There is strong evidence that oxidative stress plays an important role in the pathogenesis of MND and
oxidative stress can be treated with antioxidants. Which antioxidants are the best for MND is unknown.5
Medicinal Cannabis: the neurological healer
Cannabis is a medication regulated for MS and Epilepsy MS is like MND, it is also neurological illness that
damages motor neuron cells. In the 500 person, stage 3 trial, for treating MS with cannabis (Sativex), the
medical report definitively concluded that cannabis was neuro regenerative and neuro protective. No person
in the trail developed psychosis or suffered any organ damage or had any serious side affect. It is a safe
medication. Due to the difficulty in accessing Cannabinoid medication suggestions will be made for
unregulated cannabis treatment.
The aim of cannabis medication is to up-regulate the endocannabinoid system. The endocannabinoid
system(ECS) overlaps with the neurological system, it is concentrated in the central nervous system and the
gut. The ECS regulates the thyroid and adrenal glands, the immune and auto immune systems, motor
neuron functions and mood. It is the meta-regulator bringing the body into homeostasis.
Practically, Cannabis improves motor neuron function, reducing fasciculations and tremors It increases the
duration of muscle use, i.e. it reduces muscular fatigue As a regulator it stabilises mood and works as a anti-
anxiety, anti-depression medicine and often gives MND patients a 2nd chance in life.
Meditation, Stress and Calmness
Psychological stress in MND is disturbing Living with the experience of losing your health, to the point of
mortality is an ongoing psychological trauma. If you lose the use of your legs due to an accident, you can
adapt to that life, but in MND the losses keep increasing. There isn’t a stable position of loss to adapt to, the
losses keep increasing. Meditation can be used as a tool for supporting this fundamental change in life. In
the successful practice of meditation, you discover a place of peace within, this peace is not dependent on
circumstances. This experience of peace can be used to meet trauma and loss.
Mediation is about accepting things as they are, it is about learning to stop avoiding suffering. It doesn’t bring
pain to an end, it brings the pain of being in pain to an end, this is a release from the traumatic reality which
is the unacceptable life for many. In meditation we learn to stay in our internal world, the mind, and find the
aspect in our internal world that is always at peace, i.e. find part of ourselves which is at peace with our
losses and mortality.
That aspect of ourself which is at peace is our source of calmness. Our normal reactions contain stress, our
fear of loss of change gives us energy to react to a situation to make it better. In a healthy body we can use
that energy to act, if we know how, if we don’t know how, then that energy becomes a chronic stress leading
to an unhealthy body and a source of illness. The normal reaction to having a degenerative health condition
is a lot of stress, so much loss and unavoidable suffering that we can’t control, highly stressful. We need to
be in a state of rest and recovery, we need to accept the possibility that we can react calmly, we need to
practice reacting calmly. This is not a pretence of calmness, it is calmness derived from that part of ourselves
which is at peace with everything. We may have feelings of sadness or anger and despair, we can practise
reacting calmly to those emotions and thoughts.
Sauna
It provides three important supports:
Heat shock proteins. Heat shock proteins (HSPs) chaperone other cellular proteins, guarding them
from going astray, folding improperly or misassembling while forming larger aggregates for example
HSP40 delivers a newly formed amino acid chain (or one that has become unfolded) to HSP70,
which grabs the molecule, helps it to fold into its proper functional form and then releases it.
Additionally HSP’s stimulate the autoimmune response. 6
Deep physical relaxation:Typically the damaged muscles are under a lot of strain with very little
activity. The strained muscles add to the mobility challenge and demand even more effort, by
4 https://www.ncbi.nlm.nih.gov/pubmed/29278855
5 https://www.ncbi.nlm.nih.gov/pubmed/9989458
6 https://www.scientificamerican.com/article/roles-of-heat-shock-proteins/
removing the tightness and strain, we improve the health and flow of vitality, this allows increase
movement reduces pain from strain, and supports better quality rest.
Immune system/heath boost: it has been proven by twenty Finnish research that sauna improves the
health to the degree that is reduces heart disease by 50%. 7
Physical Exercises
With MND we have the conflict between exercise which is activating the illness and the muscular dystrophy
which stems from immobility, and flawed ,dead neurons. Exercise make the neurons fire faster and die
quicker. No exercise undermines the other aspects of healthy muscles and a healthy body. The aim in this
approach is to exercise without making the neurons fire excessively. There are three parts to this approach:
1. Non strain exercise, exercise within the range of comfort,
2. CBD and cannabis
3. Meditation and breathing techniques.
In non strain exercise/muscle stimulation, there is a change of emphasis from building muscle and
developing strength to maintaining muscle and range of movement. Simply put, under do it. Exercise so the
exercise is light.
In the case of the legs becoming wooden and heavy, it takes a great deal of effort to do even light exercise,
but without exercise the body will deteriorate, to balance up the heavier demand on muscles when it
unavoidable like walking, meditation techniques and cannabis provide support.
Exercise within the range of comfort
As the range of motion decreases, the typical exercise reaction is to stretch those muscles as much as
possible. This is a big strain and big mistake, it tires out weak muscles, it makes them much more vulnerable
to damage and pain. It is frustrating and emotionally tiring, so a different approach is needed which is to
avoid that. That is called exercising in the range of comfort. Practically that means stretching the fingers until
you meet a small bit of resistance, and similar for everywhere else, so the muscles are being activated
without being strained.
Physiotherapists or a shiatsu therapist can stretch the muscles further, but in this case, you are passively
supporting the muscles to stretch further without strain. With limited mobility in the feet, walking can be used
to lean into the resistance and gravity is being used to stretch rather than the muscle doing the work.
Walking exercise
Given a circumstance of reduced mobility, there is a step that can be practice called heel/toe. Imagine the
foot is shaped like a banana and when your heel goes down in an angle you roll forward peeling the heel off
and pushing off with the toes. This creates an exercise of the whole foot, leg and the spine. The exercise
should be done safely and without rushing or strain. First time I lost movement in my ankle and toes, I spent
months walking back and forth on a mat in my sitting room stimulating my foot to work again, and i got full
mobility back, but I didn’t get full strength back.
Throat exercises
The throat fails in three ways and there are three exercises.
a) The epiglottis which is a valve at the top of the windpipe that stops stuff going down the wrong way.
The epiglottis starts to fail. In the morning time or when you are most rested, gargle warm water and
honey.
b) The swallow muscles weaken and food gets stuck. To stimulate the muscles, swallow without food
and water.
c) The weakening of your vocal chords produces a horse whispery voice. This can be countered by
humming at different tones.
These exercise should be done when the patient is rested, if the exercises are carried out when the patient is
exhausted, it will add to the exhaustion and undermine the muscles further.
Breathing exercise
Many people with MND die of respiratory failure. Even before the respiratory muscles suffer motor neuron
damage, they become weaker due to the difficulty in exercising from fatigue and immobility Having a high
functioning respiratory process is essential. There are a few exercises for this but Belly Breathing is the most
important to practise
Belly breathing.
7 https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2130724
Chest breasting is the most common way we breathe, but it holds stress and takes significantly more energy
than belly breathing. Belly breathing, you push out from the bottom of your belly upwards, the diaphragm
muscles are not trying to pull the rib cage apart. There are 3 advantages:
a) There will be no carbon dioxide pooling at the bottom of the lungs.
b) It stimulates the auto immune system which makes the body feel rested and in a state of recovery.
c) It reduces stress, and can be used to support muscles when exercising by using less energy and
relaxing the muscular contractions.
In your position, focus on the bottom of your belly , breathing in and out. Practice simple movements as you
breathe, move your fingers, mouth, arms, your neck, your legs, within the range of comfort, gently breathing
from the belly.
Belly Breathing Meditation. Put your attention on your belly breathing in and out. Notice that breathing
happens independently. You don’t have to force yourself to breath. There is something peaceful and relaxing
noticing the body breathing. When you notice a tightness in your chest, a feeling of worry or grief, let your
natural breath collect with the strain or the emotion. This takes practice, taking into account the difficulty in
concentrating, I recommend this 3 times a day for 1 to 2 minutes at a time. Once you become familiar with
the sensation of belly breathing, you can start to use it as a relaxation for exercising. (For people
permanently on ventilators this exercise needs to be adapted if possible.)
Chi Machine
Benefits include muscle pain relief, increase in local blood circulation and oxygen via gentle motion of the
entire body, energy increase, mental focus, stable back support alignment (used lying flat), promotes lymph
drainage (as documented in Australian clinical trials8
), internal massage, physical and mental release from
tension, fatigue and stress, the promotion of deeper, improved breathing, balance of the autonomic nervous
system and relaxation. When the machine stops, a unique rush of Chi energy is felt from head to toe.
There are other sonic/vibration machines, some used in gyms, but this type is gentle and economic. I read
about someone who had a reversal and he used a vibration machine, which was out of my price range, so i
tried this machine and it is very effective in its contribution to health.
Compression Clothing
Compression clothing is used by people with arthritis and athletes. For athletes, it improves recovery rates
from exercise, helps prevent injury with strained muscles. For people with mobility issues, it increases blood
circulation, relieves stiffness and aches. Additionally for PALS, it reduces fasciculations significantly,
increases muscle fatigue recovery and is a passive exercise. I started using when i staved my thumb and put
on a support. After a few days, I noticed that my hand was less flat and saggy, it improved the muscle tone. A
small word of caution, since it is an exercise it can cause tiredness, so take it easy and if there is strong
respiratory weakness, wear a top for a very limited period only.
Neuroplasticity exercises: Changing how we think and how we react.
Changing stress to healing
For a long time doctors considered that the brain developed and stopped. This was bad news for people with
brain injuries, the message they got from doctors was – there is no hope for you. MND patients are treated
with a similar ignorance. Our brains do change and right up to the point of death, the brain is making new
connections, trying to work better, trying to heal.
It is a profound fact that our body is always healing
Healing takes place when we are at rest. We need to practice relaxing within the context of our
circumstances. We need to relax facing the loss of our health, our relationships and our lives. If we relax in
8 https://www.chimachine4u.com/chimedical.html#PubMed
this context then we are in an optimum position to heal, because we are not stressed and all our energy is
available to support the natural healing process that is always taking place.
The process for relaxing uses meditation.
When we pay attention to our inner life, we notice that some thoughts or feelings make us contract and some
make us relax. These automatic reactions of contraction build up stress. By noticing these contractions and
belly breathing into the thought or feeling, we start to change our reaction from contraction to relaxation. This
is a physical way to change how we think and how we react. We change from stress to healing.
This applies to all the emotions of contraction: anxiety, fear, depression, shame, desperation, helpless,
frustration, guilt, anger, isolation. They are all natural emotional reaction in our circumstances, there is
nothing wrong with any of these feelings. When the feelings become chronic, we are in an emotionally
contracted place in which healing is difficult. The belly breathing meditation is used to breathe relaxation into
these feelings, into these contractions, so that we feel them without running away from them, without
reacting to them.
Using contracted emotions as a source of healing
When we are practising a peaceful relaxing response to our contracted emotions, they stop torturing us and
our relationship with them changes. We can even use them as a source of energy and healing.
For example anxiety makes us restless and agitated, the emotion actually gives us energy to face a difficulty
we have. When we belly breathe into anxiety, we diminish the contraction we have with anxiety; we have the
natural emotion and we can communicate our need. We cannot protect ourselves from suffering and death,
but we can change how we react to suffering and death, so we are not stuck in a chronic contraction. Anxiety
gives us some energy to address an issue, if we use that energy, we can learn to act bravely in the face of
that issue. Anxiety then becomes a ‘source’ of acting bravely. Practising this, we lead a life of bravery,
standing facing our fears. We develop a different quality to our lives, our crisis becomes meaningful and
satisfying in a new way.
Making the smallest changes
Of course it is hard to face our biggest obstacles without getting overwhelmed, so we start making the
smallest changes, practising in the smallest ways to build our muscle of bravery. There may be many things
that we feel anxious about, the question we can use is: what is the smallest, easiest issue we can respond
to? What is the smallest easiest response we can make?
For example, many of us can concentrate on relaxing our breathing for just one breath before we speak or
move a limb. We start with something very small and we practise it. When this is applies to walking, we don’t
worry about all the steps it takes to get somewhere, we focus on relaxing with each step we take. If that step
takes an effort, we breathe to make that effort in a more relaxed way, to make less effort.
One of the advantages of making the smallest efforts is that there is no stress about it and it’s the easiest
thing we can succeed doing. That repeated success effects our neuroplasticity and we become confident in a
way that doesn’t deny our illness and disability. We are lifted by our successes and develop a peaceful
response to our suffering.
Placebo and the power of the mind
Placebo is the curative effect derived from belief. It is real, people who believe that a sugar pill contains an
ingredient that will help them improve, some of them improve. Statistically a higher number of people
improve who have taken a placebo. Belief, what we think, how we feel, our attitude towards ourselves and
our lives and circumstances has an impact, either helpful or unhelpful, healthy or unhealthy
How can we use this free resource to fight illness? Taking a sugar pill that we know is a sugar pill will not
prompt the positive placebo effect, because we won’t believe it. Given that we can’t deceive ourselves and
no medical professional will deceive a patient about the curative effects of a placebo, how can we use this
power of the mind to support our health and recovery?
Is there something that we can believe in for real which will support our health? Yes there is. It is our own
body. Our own body is always healing. Even is our illness is auto-immune related, our body is still always
making the effort to heal. Right up to the point of death our body is trying to heal, it is healing. Obviously in
our case the body is not successfully healing, but we’re not looking at the result of the body’s effort, we are
focused on the fact that body is always engaged on processes in order to be healthy. WE can rely on that
fact. We can use that fact as a placebo, as a support to our recovery.
If we couple that fact with our activities that help us be healthier, we are on the right path. Walking is healthy
for the body, we need to walk to become healthy. If we walk in order to be healthy, if each step we take is an
act for us to to be healthy, for our health, each step is an act of healing, each step heals you, each step heals
me.
Our power of healing can be amplified in all activities which we do for our health. This is healing me. As I it
here and type badly with jerky painful fingers, I am healing. The focus is on the process, not the outcome.
There is no concern with, why has this happened? Or When will this end? The focus is on the fact, the reality
that my body is healing and what I am doing, typing is to hep me, my body to heal. Any activity can be
experienced as an act of healing. Breathing, opening your mouth, moving fingers, communicating with eye
gaze technology, if you are doing it to be healthier then it as an act of healing. If you are not doing it to be
healthier, than why are you doing it? Can you stop doing it? Can you do something else which is healthier?
This is the process of becoming aware of our mental state and changing it to a healthier one. There will be
feelings and attitudes and ideas that are unhealthy, that don’t support our natural healing. Some people too
may be too unhealthy in their attitude to be associate with. Neurological consultants are probably the
epitome of unhealthy mental attitudes. Too often their belief is that there is nothing they can do, so there is
nothing that can be done. They infect most f the other medical professionals with their own limitations and
mistake their limitations for the facts or recovery. They cannot help recovery, does not mean that recovery
cannot be helped.
Stay away from people with unhealthy mental and emotional attitudes. It is a harder task to stay away from
our own unhealthy aspects. Meditation plays an essential role in developing some space around unhealthy
aspects. If it’s not helping me to heal, then it’s part of me that needs healing, can I feel compassionate to this
unhealthy aspect? No, well then there’s nothing good I can do with it directly. Can I focus on something else?
Can I meditate? If I am not willing to try, then that too is a choice.
Even for most of us, we can to practice focusing on our belly breathing. That concentration, that focus of
awareness on our breathing as an act of health supports our recovery.
Instructions for Meditation
1. Notice your breathing.
2. Notice the rise and fall of your chest.
3. Notice the air passing in and out of your nose.
4. Notice the tip of your upper lip or if it is quiet notice a high pitch sound which some people hear in
the background in their head.
The aim of noticing these objects, is to break the the incessant activities in the mind. So each time we notice
one of these things, we are noticing something that is not generated by our mind or by the issues in our life.
The aim of the meditation is to notice and cultivate this break. This break is a doorway to peace and
acceptance. Ultimately it is not the tool for meditation i.e. focusing on the objects above, that is important. It
is the break. When meditating we are trying to notice this break and stay there by using the tools of
meditation.
When you start to discover the peace and freedom which exists within you, it is not dependent on your
circumstance. You have the most powerful tool for meeting the suffering and challenges of MND.
Cannabis Medication
Sativex is a cannabis medication extracted from the plant comprising 50%CBD and 50% THC. It is used to
treat MND patients in Scotland very successfully. Many of the patients have described it as giving them a 2nd
chance at life due to the improvements in symptoms and they came off many of the other medications. It
improves mood, anti-anxiety and anti-depression; it reduces tremors and fasciculations; it regulates excess
saliva and according to GM Pharma 500 person trial, it is neuroprotective and neuro-regenerative, which will
slow up the damage of the illness.
Any form of cannabis can be used. Sativex is a oral spray. The natural plant can be used in it’s different
forms, extracted oil, variously called Rick Simpson oil or Full Extract Cannabis oil FECO, or the flower buds
or concentrated in the form of hashish.
Home-made Cannabis medication
In some countries it is not possible to access cannabis through prescriptions, in which case using cannabis
in any of it’s forms, a simple and effective medicine can be made in your kitchen. Cannabis in it’s natural
form is ineffective, it has to be “decarboxylated”, this takes place when cannabis is burned. However,
smoking cannabis is neither the most effective or economic method, and is not good for respiratory health.
The best method is to mix cannabis with an oil. The cannabinoids decarboxylate when they bind to the fat
cells in the oil. There are 2 great advantages of this, one you don’t need to smoke and two the fat cells easily
pass through the brain blood barrier and enter the Central Nervous System CNS which is the location of the
motor neurons. Normally it is very difficult to get a medication into the CNS, but the cannabinoids binding to
fat cells make it easy. Coconut oil has the healthiest fat cells MCT in Nature and is highly recommended.
Method: 100 gm of Coconut oil:
1. add 3 gm of FECO or add 9gm of hashish or add 15 gm of bud to warm (not hot, 40°C) coconut oil
and stir
2. allow to settle
3. the medicine is ready
4. take 4 half teaspoons per day
5. or using a pipette fill capsules and take 4 500mg capsules per day
The aim is to up-regulate the EndoCannabinoid System, taking it in capsule form like any other medicine is
easier to control quantity and regularity.
It is easy to make the medication stronger or weaker (before capsule stage)
If there is a side effect of feeling ‘high’, then the dose can be reduced or weakened. The ‘high’ is not
damaging and can be very relaxing. People find improvement within a week.