Hope Is Like the Ocean

When your feet first carry you onto this road, you already know there’ll be “good days and bad days.” What you don’t realize is that hope is harnessed to these good and bad days like a Clydesdale pulling a barge. As she clops down the towpath, she pulls you with her. Her name is Hope. You go where she goes, and she follows the twists and turns of those good and bad days. On lousy days, pessimism breaks over your head like surf. On better days, optimism buoys you back to the surface, so you can take a lungful of air, see the sun shine. The Clydesdale never pauses, and as the saying goes, “The road goes ever on.”

We’ve been “down” for a couple of days. Dave's energy levels are inclined to crash fast, and when he’s exhausted … he scares me witless. The saying “dry mouthed with fear” is no exaggeration. This isn't ordinary tiredness. The weariness of motor neuron disease is profound. Soul-deep.

 
Then your endless research takes you to some webpages ― legit ones, not rubbish. You read something that puts the hope right back into you. (More about that shortly.)

I was going to call this post “Never Stop the Engine When It’s Hot,” borrowing the title of a book about flyers in the Himalayas circa 1930. I’ll write about the same lesson we recently learned, but there’s more to say here, so the emphasis has shifted. The “engine” allusion refers to the wisdom of never turning off an old plane engine while she was hot. Why? Because the hot oil was so thin it drained off, leaving the engine unlubricated when you came to restart it: the engine damaged itself.

 
It’s a fine analogy for what Dave did from Monday to Wednesday, his three days off last week. He’s still working. He shouldn’t be. After three consecutive shifts, he was so weary, when his break came at last ― yep, he turned off the engine. Wound down and down, so far that the result was illness. I can’t find another word. Now, let’s see you get this engine started again without breaking it.

Every mistake is a lesson, and you must learn from it. The lesson here is that along the MND road, you can’t afford to turn the engine right off. Put it in neutral, let it idle, but never turn it right off, because energy levels fall to frightening depths. So…

Nutrition. Supplements. Protein. Qigong. Kriya. Sleep. Exercise. The engine restarted, but he won’t make that mistake again ― which is disappointing, because everyone deserves the chance to completely unwind. It seems that with MND, bone-deep relaxation does more harm than good. Nobody tells you this ―

In fact, nobody’s told us anything at all yet. We still have four days to stew through till the next appointments (at Flinders Medical Centre), where the diagnosis will be confirmed and they’ll give us a prognosis that will, if I’m not careful, dump me back into the state of shock I’m only just managing to climb out of. Right now, I can’t think too much about it. When I do hear the prognosis, I need to remind myself, like chanting a mantra, they’re quoting averages … they don’t know Dave, his strength and determination. They don’t know me. And though they probably do know about the hundred-and-one things you could do to help yourself, I’d be prepared to bet, they won’t volunteer the information.

Which brings me back to the research, and Dave has scored his first bit of genuine luck. The best MND research, and results, are happening right here in Australia. An institute in Victoria has develop a stem cell technique. No, it’s not for curing MND. It’s for testing drugs about 100x faster than was ever possible before. Take half a century’s work, do it in five. Science is seeking drugs to stop motor neurons dying, and there are about a thousand to test. How long would that take?!

I’ll give you a shock. In the US, the average time it takes to go from the concept for a new drug till that drug hits the wards is 12 – 18 YEARS. Yes, you read that right. Too slow. But ... use the new stem cell testing technique. Suddenly, the promise of a drug that might not cure MND, but would arrest its progress, becomes possible in the time Dave and I have. And that drug would win Dave time enough to wait for the actual cure.

For us, this is all about winning time. And there’s something else: new research “suggested” that a certain chemical plays a critical part in protecting motor neurons (it’s complicated) and makes the surviving ones work better. You can buy this chemical, and it’s safe. Dave did. And took a tiny dose. Whaddaya know? He speech came clear for a couple of hours.

Now, there was an Aha! moment. There was light at the end of the tunnel. Hope returned … and yes, the road goes ever on.

Balancing the Energy Budget

Imagine that the energy you have in storage is cash in the bank. Any six-year-old knows you can only make so any withdrawals before the account is empty, so you better spend wisely and bank spare cash when you can for lean times. It’s only common sense.

So, why is it so hard to grasp this, when the same theory is applied to one’s energy reserves? Athletes know this. Go too hard at the start, you might not even make it to the end of this marathon. And any way you slice it, motor neuron disease is a marathon. Even the paltry three-to-five years offered by specialists at time of diagnosis is a marathon. It might not seem like it as you sit in the office, ice-cold and shaking in shock, but you can trust me: each coming day is a year long, and if their ballpark estimate of five years is 1,825 days (yes, I used a calculator), that time is a marathon indeed.

There’s time for good days and bad days. Mistakes and corrections. Setbacks and recoveries. First step: never be afraid or ashamed to make a mistake. Figure what you did ― admit it. But you must learn from the mistake. Don’t repeat it. For instance, in the very early days (not even two weeks ago) I thought it was smart to feed Dave peanut butter smoothies, whipped potatoes, banana cream. I was 20km wide of the mark. That’s a lifetime’s worth of Lectins (read: slow poison) in one day. Yet, this is the official, medical advice to halt the weight loss that results from the disease accelerating one’s metabolism. Put another way, the official advice is for an MND sufferer to jump in and poison himself. And if you question regarding those Lectins, the answer is always “More research is needed to prove that.” Translation: Give us another ten billion dollars. You’ll be milking the cash-cow to a standstill, if she isn’t already dry.

There was a time “much more research” was needed to prove that any galaxy outside the Milky Way even existed. This might sound crazy in 2024, but it was only in 1924 ― 100 years ago ― that proof came of one other galaxy beyond ours. You can thank Edwin Hubble, at Mount Wilson Observatory’s Hooker Telescope, for that irrefutable proof … and yes, before Hubble, (some) geniuses denied that other galaxies existed, or even could exist. The Milky Way was the entire universe.

Same difference with nutrition, and so many other things today. Securing enough proof to satisfy scientists would gobble enough money to build a city on Mars. And this, in an era where funding is scarce because everyone, everywhere, is broke. So…

We’re on our own devices. You have to break trail, bushwhack, be your own guineapig, experiment, record the results ― judge your progress in your number of good days by ratio to your bad ones. If you feel good 55% of the time, you’re winning.

They won’t all be good, because Lesson Two is about that Energy Budget I began with. The human body is a machine, and not even a very well-designed one. It’s filled with flaws that any good engineer would have corrected before even building a prototype. But here we are, and we’re stuck with it. You pay into the Energy Bank by eating and sleeping. You make withdrawals with every movement ― and as any student sitting an exam knows, your brain is chomping through carbs at an alarming rate.

Eating is essential. Power naps. Structured, intelligent exercise. My catchphrase at the moment is, “Always active, never tired.”

The eating must be planned, and if you run with the fact (proven in animal studies) that Lectin toxicity causes cellular apoptosis in motor neurons, you need to rewrite the menu, change how you cook. Power naps must come as you feel your energy starting to deplete. Sleep replenishes it. It just … does. If anybody tells me they want $10b to prove what any living creature has known since childhood, I’ll kick their shins.

Exercise is vital. MND causes the nerves that instruct certain muscle groups to ... fail So, the muscles don’t work as often or as well, and they atrophy. Weaken. Your mission is to get those muscles working, any way you can ― and this is possible. I’ve done the reading. Low/moderate resistance and cardio is recommended, which demonstrates that the MND-affected brain ― like the brain of a stroke survivor ― can find ways to “wire around” bad spots that have gone dark to keep those muscles working. If the brain couldn’t do this, no stroke patient would ever walk again. And they do.

But the Energy Budget must be at the forefront of your mind as you plan anything, a day or an hour. Yesterday, Dave’s batteries flattened disturbingly in the afternoon, after a wonderful start to the day. He woke listening to a garden full of birds, feeling good. Frustrating nonsense in the morning sapping his energy as if it ran down a drain. He crashed out so hard, so fast … well, I got really upset. Negative thoughts invaded my headspace. Frankly, I made myself so bloody ill, I couldn’t eat ― and that’s bad. Negative thoughts will drag you down. Thoughts make molecules. Bad thoughts make baaad molecules. Bad molecules will poison you. So, get into that positive headspace, stay in it … get that Energy Budget balanced, and learn to live again.

Guess What’s Coming to Dinner (and then shriek)

As we slowly, gradually, stop panicking and get to grips with the fact that Dave has won the “booby-prize lottery” and has Motor Neuron Disease, our research takes us in so many unexpected directions. Some of them are blind alleys; some lead to official information that is so puerile, it seems to have been written for people who can’t figure out for themselves how to dunk a cookie in a cup of coffee to soften it (yes, that really was the published advice for people who’re having swallowing issues). There are times you want to run around screaming.

The amount of misinformation out there is staggering. Read ten different nutrition specialists, you’ll get ten different theories, and they can not only contradict each other, they can contradict themselves. It would be true to say that their information is likely applicable to most people, most of the time. But what about if you’re not “most” people? About fifty million people in the US alone suffer from autoimmune diseases. That’s way beyond 10% of the population. If that percentage holds true for the whole world, at eight billion ― well, you do the math. And for that many people, diet could be the key to living … or not.

All those foods we thought were so healthy that we almost lived on them ― oats, tomatoes, bell peppers, eggplant, bananas, peanuts, so many more ― well, for most people, they are indeed healthy. But if you have an autoimmune condition, they spell big trouble. Anything from Crohn’s Disease (which was my mom), to arthritis (my grandfather, and me), to MS (that’s is Anna) to MND (that’s Dave) … yep, all autoimmune. So, what’s the deal?

Turns out, in each of these foods there’s a type of proteins called Lectins, and in some unlucky people, certain of these Lectins produce (grasp this and shriek) a neurotoxin that damages and destroys motor neurons. Yes, you read that right. There are loads of so-called healthy foods that are, in fact, slow poisons.

So, for Dave and myself, what’s the next step? Eliminate the Lectins, for a start. As many as you can get rid of. I don’t know how much of the damage caused to his motor neurons is the result of this slow poison, but it makes sense to at least try to “stop the rot,” and do no more damage if you can avoid doing it ... minimize the deterioration in future.

No, I’m not saying that changing your diet will cure MND. It won’t. There is no cure. Get your head around this, and the rest starts to make sense … or, a kind of sense…

What am I feeling today? Let down. Betrayed. I needed science to have the answer to this problem, after about six decades of research and enough funding to send a spacecraft to another star system. Where is the science? Where are the results? Where’s my cure, damnit?! (Calm down, Valkyrie ― put away the battleax, it won’t do any good.) But this is what I feel, in a nutshell. Let down, after spending my whole life ― and as the saying goes, I’m “as old as God” ― believing in science. Where is it when I need it? It’s supposed to be there for me. But it wasn’t there to rescue Carl Sagan, who passed over to the next dimension at the end of 1996 at the age of just 62, and almost 30 years later … it’s not here for Dave.

I’m … perturbed. Diagnosis is one thing, but that’s where the medical engine runs out of steam. All else they can offer is no more than support, literally hand-holding. I can do that myself. I could have done that a thousand years ago. I’ve been reading about the drugs that are currently under test. This is the pinnacle of our achievement: a number of Class A poisons that “may” benefit the patient, if he can live with horrific side effects until it’s time for a ventilator ―

What??!!!

There’s no answer to this, but Dave and I, and Mike, will soldier on. Find ways to do things, ways to live, create the “new normal,” and make it happy, rewarding. Remember, remember, that people can live for decades with MND these days, and several leading universities are expecting MND to be “history,” at quote Sheffield University, inside a decade. Are they right? Are they blindly optimistic? Are they just angling for more funding?

Who knows? But I have to believe they’re not wrong, not lying, and not just milking some cash-cow. The hunt is on for ways to “stop the rot,” improve Dave’s breathing, ease his swallowing, vastly improve his nutrition, stop the weight loss, rehabilitate the atrophied muscles.

Team Dave has (almost) stopped crying and panicking, and is getting its collective act into gear.

Next: Balancing the Energy Budget

Welcome to the Insane Asylum

This is me. Inside. This is what's trying to get out.

Sometimes, you have to wonder about the sanity of the people in charge, which, in this case, comes down to the specialist who ordered Dave’s MRI, the genius who designed the scan, and the juvenile operator of the machinery. Here you have a patient ― Dave ― whose condition is delicate, to say the least, and also specific. Given what the specialist already (thinks he’s) diagnosed, that specialist ought to know, fact!, that this patient cannot lie flat on his back at all, much less for a half hour. He should know that his patient is drowning in saliva, and that if said patient were to “aspirate” a drop of saliva into his lungs ― bingo: pneumonia, right off the bat.

So, what does the specialist do? Orders an MRI where Dave must lie flat for half an hour … and the genius in charge of the machine tells the man drowning in saliva and in real danger of aspiration pneumonia (which can be lethal), “Don’t swallow.”

What??!! You want to run around screaming, caroming off walls, bellowing about the stupidity and cruelty of medicine in general and (some; not all) doctors in particular. I’ve had a bone to pick with the diagnosing specialist in Kent Town since last Friday (this is Day 8, counting D-Day as Day One … and since that day was a century long, it counts). I have an axe to grind with him for calmly and emotionlessly handing out a death sentence, without grace, compassion or kindness. That is not clever doctoring; it’s not even good “humaning,” and I know there’s no such word, but there ought to be.

Top off that performance at the Kent Town office with the sheer genius of ordering an MRI that ― yes, fact! ― he should have known would torture the patient and possibly put him in the hospital, fighting for his life ―

I have discovered that a barbarian lives inside me. There’s a Valkyrie just beneath this delicate little five-foot-nothing exterior. She’s a savage with an axe who must be held on a tight leash lest she run amok. Suffice to say, I’m so angry, the Valkyrie is struggling to escape. I once told our GP “There’s a huge green rage monster inside me.” Well, she’s not green, but she’s quite the monster … and she has the scent of battle in her nostrils.

As I write this, those medical bas――s have reduced Dave to exhaustion, which is the worst possible thing for him. He’s sleeping it off, feeling like hell, and he said the words, “Never again.” (Oddly enough, the same words I said myself, after my last CT scan, when the same radiology clinic inflicted on me a dramatic reaction to the contrast dye needed for the test. They gave me a case of hypothermia that three-quarters killed me, and abandoned me in a corridor, in the middle of winter, dead opposite the doors, which whooshed open every 45 seconds, causing a wind-tunnel effect of icy air, blasting a victim who’d already turned blue.)

So, this was the MRI experience … 

What do I feel today? Furious. Angry. Ready to let out the Valkyrie, if it would do any good. But it won’t, and I know it won’t, so … home. Get him a warm drink. He gets into bed, trying to sleep off the effects of the torture while I rage, rage against the stupidity and witless cruelty of medicine in general and (some) doctors in particular.

There’s a saying that “A specialist is someone who knows more and more about less and less.” But that is not carte blanch to behave as if they’re utterly insane. It appears the inmates have taken over the asylum. And these are the people we trust with our health, to the point where they calmly, without grace, hand out what they believe to be a death sentence and then order the patient to be tortured and endangered.

Enough. No more. One round of tests remains, and I honestly don’t care what the final diagnosis is, because Dave and I have already faced the worst it can be, and the fight to not let this thing win has begun. No, I’m NOT saying motor neuron disease is currently not lethal ― and Dave almost certainly has the most severe kind of MND. But I’m reading case studies of people who were given five years and lived 20 or 25 because they managed it right … so, if Dave’s variety of MND is handled just right, the paltry amount of time these geniuses are going to quote as the rest of his life can, and will, be made into 10…

And 10 will get us through to therapies that will win more time … and more … until the cure is in his hands. It’s all about winning time. One thing doctors won’t do is help us in this quest. They’ll offer palliation, keep the patient comfortable until ― until ―

Nope. So, it’s a strict paeleo diet (I’m relearning how to cook; and more about that in my next posts), Kriya, Qigong, structured exercise, nutrition, and very soon, acupuncture. I’ve just read a clinical study on this that made my radar turn on. But no more witless cruelty, or else…

I swear it, the Valkyrie will get out. And when she does ―