Exhale!

10 November, 2024

Several times, Dave has mentioned that the “worst of times” in the MND process are those “between times.” If this were a movie, you’d watch the scene where he didn’t feel well … jump cut to the GP’s office, where we get a referral to a neurologist … smash cut to the MND Clinic at Flinders, the sledgehammer final diagnosis: no wiggle room left, no doubt about this. You’d segue to teary, philosophical scenes at home, and fade into the marathon session at MND SA (last Friday), before dissolving into the impending scene at Centrelink (tomorrow), where we front up to a counter, petition a total stranger and request assistance … May we please lodge an application for Disability Support?

This script would make a well-edited show, but the truth is very different. Six weeks have passed since we sat in the GP’s office and he said the words, “I’m worried about you, Dave.” It’s been six centuries, and we’re not done yet. Out there, ahead, is a return to the GP’s office ― November 20, Dr Tim’s first available time, for a slog through the NDIS paperwork. Along the way, we talk to the insurance company, and finally, finally, get hold of a paper-printed prescription that will (at last!) allow Dave to start the drug that will hopefully slow this thing down for a year or so. Breathing space.

We actually have the prescription. It was emailed to us as an ePrescription. I phoned the pharmacy a few days ago and they said, “Sure, we can fill an ePrescription; come in and pick it up on Sunday morning.” Sunday rolled around, but a trip to the pharmacy inspired shaking heads. Nope. You’ve got the MND. You’ve got the ePrescription. They’ve got the drug. They won’t give you the drug … because the ’script was emailed to the patient, not to the pharmacy. But how the [bleep] was the specialist supposed to know what pharmacy to email it to? A crystal ball?

This is one of those instances I’d file under “Bureaucracy Gone Bonkers.” The demand for a hardcopy in an era when Australia Post can take 7 – 10 working days to deliver a sheet of paper across town, while the patient’s MND spins on, spins on, and precious time wastes. One despairs.

Take a deep breath. And another. But if you happen to be the patient, remember this: it turns out that the exhaled breath is as important as the inhale, because a major problem for MND patients is the buildup of CO2 due to not being able to exhale properly ― a consequence of atrophied diaphragm muscles. Ah … so. This was a tiny, throwaway bit of info, from the administrative nurse, and we’re grateful to know it. Now, Dave knows which muscle groups to work, to strengthen. (And he has his TriFlow gizmo to measure his progress, left over from the big bike crash where he broke so many ribs.)

Does a sigh count as an exhale? Sigh. We soldier on, but the road is long, hard and … darker than I’d anticipated. It can be very dark indeed. The people at MND SA are beautiful, but again you encounter the nihilism, the fatalism, as if death is a done deal. You must remind yourself a hundred times, you’re in this game playing for time, because more research is going on than ever before, and it’s accelerating. There’s a cure out there … you have to still be here when it arrives. Prognosis is based on medians and averages. So, don’t be Mr. Average. Find ways and means…

Such as looking into Ayurveda’s holistic approach. Surprise: they get results. Adapting the Wahls Protocol for an MND sufferer who doesn’t have a lot of spare blubber to lose. And figuring out the communications problems, before they get much, if any, worse ―

Hailing frequencies open, Captain. We’re taking our first steps into the world of Auslan, the sign language used by deaf and vocally-impaired people. You know what I miss? Dave’s voice. Anybody who’s known him for long knows what I mean. That voice is already gone. But even more, I miss the constant chatter, the rambling babble we used to keep up, that made us laugh and joke. It’s gone, because it’s so bloody hard for him to speak that words must be strictly rationed, struggled with, murmured. Ye gods, I miss the old random banter we kept up for 25 years.

The communications specialist at MND SA recommends a text to voice app, used with a tablet. It’ll work to a point; he won’t be utterly incommunicado. But where’s the casual communication that long-married people take for granted? It usually takes two years to be fluent in Auslan, but we’ll do it way faster, because we want to. Need to.

Sigh … exhale. Kriya. Qigong. Weights to lift. Drug to take. Lectin-free paleo. Pureed and thickened food and drink. 101 supplements to keep the rest of the body as robust as possible. Sleep like a baby. There’s just a few cards left in this deck to play, and we’ll play them all.

I’ll write more, when I’ve something to relate that doesn’t just sound like agonized fretting over things about which, as yet, I can do absolutely nothing. I could write plenty of that! But I won’t … at least, not here, not now. Maybe one day. But not now.

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