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.