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 ―

Making a Sharp Right Turn

I can’t believe it’s only five days since “D-Day,” or “Diagnosis Day.” It seems a century since Dave and I sat in an office in Kent Town, and the neurologist said the magic words. You’d have to call them “black magic” words. Nothing light, positive or good trips off the tongue when you say “motor neuron disease.” So, a hundred years on from that afternoon, where are we?

I’m calling this chapter “Making a Sharp Right Turn.” Dave and I (and my brother, Mike, who lives with us and has worked in partnership with me as a writer, editor, and artist since Noah launched the Ark) thought we knew where we were going. The future was planned. We knew in detail where we’d be in 2035, when Dave would retire. It’d be “Hey, for the open road” as we took off in a luxury motorhome to tour this country, see and do everything for as long as we could, then settle down at last, and watch the sun set.

Plans got changed. You could say, that’s what plans are for. You make them, you break them, every day. But life plans are not supposed to be for breaking ― at least, not so easily. In one minute, the doctor literally blew up the world. Not the planet, but our world.

One minute, you’re so sure of where you’re going, you’re cruising at highway speeds toward a future that’s planned and anticipated with the warm fuzzies. The next ―

Slam on the brakes. Come to a screeching halt. Nope, you missed the turnoff. Reverse, back up and turn right, a full ninety degrees. You’re headed somewhere very different, and not even sure what or where the destination is.

So much is uncertain; almost everything is in flux. Tomorrow, Dave has the MRI that will add to confirmation of the diagnosis of so-called “bulbar onset motor neuron disease.” There’s an outside chance that the scan, and a second round of tests, might ― and I say might ― downgrade the diagnosis to Myasthenia Gravis or Kennedy’s Disease. Neither of those is good, but I’ll take them over bulbar-rubbish-MND.

Why? Because both those others offer more time. Obviously, part of that is because Dave and I thought we had decades ahead of us, all the time in the world, and I still want that. (What do I feel? Cheated. Robbed. Short-changed. Let down by Mother Nature.) But there’s another facet to the time we’d be given back by a downgraded diagnosis.

We’ve done a mass of reading. The research into MND is going rapidly. There’s also evidence to suggest that Covid 19 triggers MND in certain people. You didn’t want to hear that, did you? Because everybody in the world has had Covid. Yes, you too. And anyone who’s had it could be among the winners of this booby-prize lottery. Covid has affected billions, and if the evidence is correct, there’s about to be a plague of MND. Dave is far from alone. Likely as a result of this, the cash-taps are turned on at last at research level. From University of Sydney to Sheffield University in the UK, to the big neuroscience labs in India, work is racing ahead.

We need time, and Dave will be there when the new therapies arrive. Even if the diagnosis goes against us (yes, we’ve faced the greater probability that it will), we’re going to fight. It’s not just about keeping his swallowing stable, using Kriya to improve his breathing, and learning to sign for the day when his speech is so slurred that his voice is mostly for conveying emotional content. Those, we’re already doing: progress is being made. No, it’s also about keeping a strong heart and lungs, and a robust constitution.

Waaay down the track (and please gods, let it be years and years), his biggest risk will be aspiration pneumonia. This is how Mom passed ― albeit at 87, too frail to stand, and utterly worn out. Even so, it was the fourth bout of pneumonia that took her. She beat the first three. Get hold of that. Dave is 59, still an athlete, with the athlete’s mindset. If “it” can be done to keep his whole body strong, keep his weight up as a hedge against the dark time, it’s being done, or soon will be. Mike and I are sure we see the early signs of improvement. This morning, Dave and I took a walk at the local wetlands ― he had to slow up and wait for me. I have my own “issues,” and don’t move at his speed.

For me, the challenges are huge. I must relearn to cook. Rearrange half the house. Drop my writing career and click back into “caregiver mode,” where I functioned for many years, with Mom. I’m doing this, but I’m still at the “screeching brakes” stage of this sharp right turn. But those brakes are slammed on, and I know where the side road is. Now, if I only knew where it went.

The Journey Begins

D-Day + 4 … how am I doing? (That’s Diagnosis Day, and it broadsided me with all the force of the Normandy Landing, so the term is actually fitting.) I’ve had three straight days of an ongoing panic attack, ice cold, shaking from head to foot ― hardly able to stand ― and inclined to cry without warning, and cry for a looong time … Today, I’m almost over the crying part. Not quite. The tears still come, but not quite as often, and I can get them under control faster. It’s not healthy to shut them in, bottle them up, but the blind panic has to stop at some stage or ― without exaggeration ― I’ll damage myself. So ―

Four days on, and I’m more rational. The work has begun in earnest to halt, or slow down, the ridiculously fast progress of this disease. I hadn’t realized Dave’s condition had deteriorated so far, so fast. It’s only taken six months and his athletic performance is probably eroded by about 60%. That’s dangerously fast. So fast, it scares me rigid every time I think about it.

What do I feel? A crazy blend of fear and sorrow. The grief is anticipatory. There’s no need for it yet, but the mind leaps to the most obvious conclusions and you just can’t stop it. So, like any process of grieving, you let it run its course ― and it does. I’m not saying that I won’t spontaneously cry in a week, a month, a year, but I believe I’m rational again. Thinking. The fear is much more difficult to defeat. It’s the fear of being left behind. Separation. Anybody who ever lost a loved one knows exactly what I mean; no need to belabor the point. But that fear is very real, and it’s like a paralysis that invades body and soul. It also passes, but for those minutes, it’s pure torment.

The only defence against the fear and sorrow is action. We’re trying ― weeks ahead of getting a shred of help from any specialist. The inequity of the situation is that this disease progresses to fast it’s frightening, and yet you wait weeks for tests and an appointment with whatever specialist … it’s as if the specialists have already accepted that nothing can be done, and they’re just there to “make you comfortable while you fade away.” Well, nuts to that.

Next step: research. What can you do? What can you take? How does exercise work for MND? What makes it worse? Is MND one of the autoimmune diseases?

Many things have already come out of the research, and I’m guardedly hopeful. No, I’m not indulging myself in denial, which is a bind alley in which one hides, hoping to wake up from a terrible dream. But rest assured, research continues apace ― not so much in the US, where government funding has, frankly, sucked, but in Australia, Japan, the UK, and doubtlessly other countries too.

Is there hope of an eventual cure? Yes, there is. University of Sydney is very optimistic indeed about a complete cure “inside of a decade.” So, our challenge, and our ambition, is to find ways ― any way, every way ― to retard this disease to the point where its progress is slooooow, and Dave will be around in 2034 to take the cure, take the rehab, get back on the bike and ride away.

What are we doing? Nutrition. Exercise. Weight lifting. Cycling (not to the point of exhaustion). Specific breathing techniques (have you heard of Kriya Yoga? Look it up). Balance exercise, like Qigong. We just got a tip regarding the link between gluten and autoimmune disease, and when I chased this up, I soon discovered that two separate studies have very recently identified definite pointers to MND being autoimmune.

It’s as if Dave’s “autopilot” has broken down. Speaking, swallowing and breathing are things most people take for granted … they’re automatic. Well, one day they stop being automatic, and you have to “fly this bird on manual.” Think about your breathing and swallowing. O…kay. It’s not the most fun thing in the world, but he can do that. And when he does ― with a Kriya “cycle” between swallows if necessary ― he’s actually swallowing and breathing quite well. At least, that’s what I see, as I watch.

We’re in the process of rearranging the house to make things easier. He’s just changed to an electric razor. Bike ride this morning, and no lousy aftermath … massive amounts of nutrition, and a genuine uptick in his energy levels. There’s more that’s already being done … and more that will be done in the coming days, weeks, months.

So ― guardedly optimistic. I can definitely see an improvement in Dave after a huge blast of nutrition and … “other stuff.” What can we actually achieve? I honestly don’t know, but if you don’t try, the result will be nothing at all. What’s the goal? To “wind back” Dave’s condition by six months, or even three, if that’s the best we can do, and then hold it there for as long as we possibly can, while we wait for the monoclonal antibodies and the stem cells, and the new drugs, and all the rest.

The path will take years to tread, but the journey has begun.