News of my imminent demise … (or not) … which door shall we choose?

When you’re hit with a diagnosis of a terminal illness, as I have recently discovered, you have more than the illness itself to consider. Apart from grieving, because you’re going to lose everyone you love, there are also practical considerations concerning the cost of treatment and the fate of the people you’re leaving behind. You also have to think about the practicalities associated with what you’re told is going to happen to your body as it deteriorates. So Rob and I were sinking under the enormity of it all when Fiona and Triona suggested a GoFundMe appeal. In just a few days, we’ve had such an enormous, overwhelming, response that’s lifted a great deal of weight from our shoulders. The words ‘thank you’ are woefully inadequate.

People have called me a warrior, and say that I’m courageous. Well, that’s not strictly true. Part of me is terrified. I’ve been through tremendous highs and lows, one day planning my funeral and feeling abject misery, and other days (most days) feeling extremely positive. It’s not been easy for Rob, either. Bless him – he is the true warrior.

It seems I’m faced with two doors. The first door – the orthodox medical door – says that I have progressive bulbar palsy, a motor neurone disease that prevents the nerves in my brain and spinal cord from supplying the muscles in my tongue, throat and mouth. My tongue will atrophy, my throat will stop working. Eventually I won’t be able to speak or swallow, or breathe without aid. At the same time, electrical tests have confirmed that the nerves aren’t supplying the muscles in my arms and legs properly. I’ll become progressively paralysed until only my mind is left. The ALS Association of America cheerfully described it as being buried alive.

To cap it all, I don’t know how much time I have if I follow the conventional route (aka no cure or treatment), or even if I attack this disease with complementary therapies. It could be a couple of months, or a couple of years, or I could find a way to beat this. It’s incredibly harrowing to be given such a dreadful diagnosis and prognosis – but the orthodox system is just telling me what they believe to be true, and I respect them for that.

However, I truly believe that the conventional message of no hope can result in devastating consequences. When you’re told there’s no cure and that you’re going to suffer dreadfully before you die, this can destroy your health even further. The scientific discipline of psychoneuroimmunology has already confirmed that the mind and emotions can effect physical changes on the body.

Rob and I have both attended appointments with physicians and consultants, because this affects him as much as me. We’ve learnt that MND (known as ALS or Lou Gehrig’s Disease in America) is a mystery illness. Conventional medicine claims not to know what causes it, and offers only practical support such as breathing machines, a feeding tube directly into the stomach, a wheelchair, and so on. The only drug available can extend what is sure to be a miserable life by only four months – despite legions of drug trials.

The second door is a more hopeful one, provided by Mother Nature. Since 1994, I’ve been asking why our dogs die so young, and suffer from chronic debilitating illnesses. I’ve been studying, practicing and sharing many, many complementary healing disciplines, and I know for an absolute fact – because I have seen them – that ‘miracles’ are entirely possible. Thank God that I don’t just have conventional medicine to rely on. There are so many courageous, committed, people to be grateful for: a long line of holistic doctors and practitioners, as well as research scientists, who have gone before me and contributed to a huge body of knowledge that I can draw upon.

Far from being a mystery illness, there is research to point towards causes for this disease. We know that heavy metal toxicity is a contributor. We know – because there’s research to prove it – that viruses, bacteria and fungus have been found in the brains and spinal cords of people suffering from MND. We know that EMF – electromagnetic frequencies – are involved. And there is also research to say that emotional trauma may be involved. So I’m working on each of these areas. I truly believe that it could be possible to find a way to heal from this. Except I don’t think it will be me doing the doing. I’m following the path as it is opened up before me.

The first thing I’ve been doing is detoxing from heavy metal poisoning. This means taking natural supplements which claim to do this, including charcoal and cilantro.

I’ve also been taking many nutritional supplements, each chosen carefully to do what the body needs without causing further damage. I’ve also received the help of people skilled in homeopathy. Friends have gifted me with their time, working with me to uncover and release traumatic events to help heal my literally frazzled nerves. Theta Healing from Liz, Master Key Healing from Larissa; even Gary Craig, who developed Emotional Freedom Technique, responded to an email I sent him. This wonderful, busy, man told me to Skype him any time to answer my questions about his latest Unseen Healer Technique. Gary said to me: “You should see this as an opportunity”.

There have been significant improvements. At one time I had dreadful insomnia. I’d be asleep and then suddenly wake up, all the lights on, wired. This no longer happens. I was also very reactive to even slight stresses, when it felt that every nerve and cell in my body was on high alert in the fight/flight/freeze response. This doesn’t happen either, now. Well, tell a lie: we had visit from the MND nurse yesterday, courtesy of the NHS. She was kind and supportive, but since the NHS is gearing up for what is expected to precede my demise, I couldn’t sleep last night for fear and anxiety.

There have, though, been other encouraging signs. Although I still have trouble speaking, and sound like I’ve had a stroke, there have been small improvements in this area, too. I can now blow a raspberry which I couldn’t do in the last year, and sometimes I can even whistle. Rob and I cried when I whistled a couple of weeks ago.

I’m adding natural foods and supplements that are known to remove bacteria, viruses and fungus from the body. They include celery juice, berberine, lemon balm, L-Lysine, and quite a few others.

So many generous people have contacted us to suggest other supplements or therapies – so many, in fact, that it’s been hard to keep up with them. There just aren’t enough hours in the day!

I’ve also discovered that food sensitivities may be involved in MND. In my own case, I recognised that I’m sensitive to tyramine, an amino acid which, research informs me, can cause the release of a biochemical called noradrenaline which is referred to as a stress hormone. The sympathetic nervous system then triggers a response that is commonly referred to as our ‘fight or flight response.’ This is behind the insomnia.
Tyramine is found in many foods that you would otherwise think are healthy: strawberries and many other fruits, many foods that aren’t totally fresh, anything fermented like yoghurt, cheese and sauerkraut, olives, peas … many, many foods. And because fermented produce is a problem, so is monosodium glutamate, or MSG.

This all means that many foods and supplements that might help people with other conditions are actively dangerous to me, and possibly other MND sufferers, and that anything processed is likely to be dangerous because they put MSG in practically everything. This complicates matters, because I can’t just take anything recommended without working out what it is and what it does in the body first. For example, practically everything that heals leaky gut contains either glutamine, glutamate or tyramine.

IMG_0715 (2)

I discovered that glutamate is a mediator of mercury toxicity, and that sensitive people suffer from glutamate storms. Glutamate, one of the most abundant chemical messengers in the brain, plays a role in many vital brain functions, such as learning and memory, but it can inflict massive damage if it is accidentally spilled into brain tissue in large amounts.

Glutamate flow in the brain is normally kept in check by a system of dam-like structures, which release a trickle of the substance only when and where it is needed. But burst a dam – as happens in stroke, head trauma, and some other neurological disorders – and the treacherous messenger floods the brain. The surge of glutamate radiates out from the area of original damage, and kills neurons in nearby areas. The expanded damage can leave in its wake signs of impaired brain function, such as slurred speech and shaky movement – symptoms of ALS and other neurological conditions. A Foundation in America is currently trialing a treatment that stops the glutamate storm, and this is something your support has made it feasible for me to look into. So there’s a tremendous amount to go on and work on.

The other branch in this tree is that I do believe in the Divine. I believe that there is a unifying intelligence holding this world together, and that this unifying intelligence (called the Quantum field by some) is LOVE. It’s the Creative Principle, the Source of all things. Last night over a hundred CHC members joined together in a healing circle to send healing to me. As I laid my head on the pillow to sleep, I felt the energy of love brimming over in my body, heart and mind. I know that love is the greatest healer.

In only nine days, people have demonstrated the love they feel towards me by donating over £9,000 to help me try to beat motor neurone disease. If I’m successful, it won’t just be because of me, it will also be because of you, and the Source of all of us. Then I will do what I’ve always done, and share what I’ve learnt so that other people can benefit. Everything is circular.

Motor neuron disease is currently an incurable mystery illness, but the only way we defeat such things is by researching – drawing upon the work others have done before us – and sharing what we know. I have unfortunately become a test subject and the results will either be triumphant for many, many others – or I’ll have egg on my face (which doesn’t matter too much because I won’t be here to have to wipe it off).

If the grim reaper can be shown the door in my case, my dream is that we could, together, build an alternative Gates Foundation, where people and animals can come to heal and where – as you have done for me – money isn’t the stumbling block to healing. Complementary therapies do work. Many of us have seen them work. But they, like everything else, cost money.

When I started Canine Health Concern I thought we would change the world. Eventually I realised that we couldn’t change the entire world, but we could change it for one dog, one person, at a time. Eventually, I now know, those individuals will add up to a movement, a new way of living – and the world will ultimately change. I admit to having suffered from impatience over the years!

Thank you so much for coming on this journey with me. We all need each other in this world. And remember that, without the darkness, the stars wouldn’t shine.