Blue Notes … and Some Not So Blue

7 January, 2025

2025 is a week old and it began with a challenge. A monitor that wouldn’t turn on (fixed with a new one, but now I wonder if the old one really is kaput, or was it the cable? Did I buy a new screen I didn’t need? Okay, so I end up with a spare monitor) … then, Dave gave Mike and me a major scare ― possibly himself too, and if so, it’s a Good Thing.

Everything that’s been done to combat the MND has worked so brilliantly, I’d have been prepared to state, categorically, he was in remission. (Did a purple flag just run up? Did you spot the word “was” there?) In fact, thanks to a lectin-free paleo diet, micro-nutrition, super-high protein, Kriya, Qigong, Kundalini, acupuncture, meditation … he was so good, I believe he became somewhat blasé about his health.

Me? No, I didn’t get complacent. I never will, but Dave ― yeah. He started taking it for granted. Being Dave, he had to go out and push his luck. (Anna, you knoooow whence I speak…) Long story short: on December 28, he rode up Old Willunga Hill with a huge group of mates ― a triumph! Not only did his body do it, but it didn’t protest loudly enough for him to hear it. No problem; huge fun. What an achievement!

But, but, but … the weather turned hot, and he couldn’t resist going out again, in a hundred degrees. The athletic high, the endorphin rush, is wonderful. Up to a point. Past that point, it has the potential to mask what your body is desperately trying to tell you. If you’re fully healthy, you can (probably) afford to ignore it and ride through. But I’ve no doubt Dave’s body was signalling frantically that it wanted to quit. That “pushing through” would do damage. Endorphins thoroughly masked the warning signs. He rode through when he shouldn’t have. Here’s the rub: overexertion over-excites motor neurons, and those little fellas can perish by the bushel. Huh.

Then came the downturn. He also hadn’t had acupuncture in two weeks. (A specialist is entitled to take a summer holiday too.) The hundred-degree ride was Saturday, and on Sunday, Dave scared the willies out of me.

What does it look like when remission ends? Do you get a second chance to stop the rot, patch over the damage, recover lost ground? All good questions, as yet unanswered.

Sunday was bad. Monday was about 15 hours of sleep, deliberate eating, copious micro-nutrition ― and acupuncture. Dr Lum is a magician. Every day, I thank my stars a lady down our street recommended him nine years ago for my own colossal migraines. Chinese doctors don’t advertise: patients find them through recommendation. Laser acupuncture had relieved the lady’s rheumatoid arthritis, and with Dr Lum’s magic, my migraines reduced from life-altering to “just” a nuisance I can live with.

Under his talented hands, Dave begins to recover at once. Tuesday, after a ton more micro-nutrition, Kriya, Qigong at al ― I see signs of recovery. Perhaps his remission isn’t shot to bits after all. As he says, paraphrasing George of the Jungle, “Dave just lucky.”

Bloody damned lucky, if you ask me. A dozen others would’ve played fast and loose with their remission, and blown it to smithereens. (Conventional wisdom is, “Use it or lose it.” With an MND remission, that should read, “Abuse and you will lose it!”) I think, hope, Dave has dodged this particular bullet. There’s excellent reason to.

MND research is about to take off like a SpaceX rocket. We just learned that a wealthy and comparatively young hedge fund manager has been diagnosed with this rotten, lousy disorder. He has opened the cash taps from his personal fortune because he wants his own cure. MND research is traditionally underfunded and consequently a decade behind where it ought to be. Now, pour the cash on with a fire hose … oh, yes.

 Today, Dave is down at Noarlunga, getting “a fitting” for his ebike ― 

― the device that’ll prevent any replay of what just happened. No more endorphin-masked overexertion piled onto a body with MND that does―not―work like the ordinary body. Or ―

This is the theory. The next piece in the micro-nutrition puzzle is royal jelly (thanks, Liam, for jogging my memory. I’d utterly forgotten this one), and it’s due to arrive tomorrow, I believe. Activated methyl cobalamin, taurine, arginine, choline, inosine, N-acetyl L-cysteine, Alpha-GPC, nicotinamide riboside, magnesium-BHB, ascorbic acid, Mucuna, Brahmi, royal jelly, and much, much more … it’s quite the witch’s brew. Powerful stuff, all under test in labs from Japan to Scotland, via India and Australia.

So, we soldier on. I think Dave may have dodged the bullet ― and that hedge fund manager wants his cure. So … optimism! Good thoughts make good molecules, right? Right. Here I am being optimistic as we launch into 2025. Working on my own health and peace of mind at the same time. Hey, I’ve become a meditator! I’ve come to swear by it and look forward to it. So ― 2025, here we come.

Take a deep breath. No, I said a deep breath! And again. And be calm, be peaceful, be positive. Let optimism be your watchword and let the New Year's resolution be to seek, and find, grace in all things. So ... caaaaaaalm. Yes? Like this:

Merrie Yuletide, 2024

To friends and family ... Merrie Yuletide in the north and Beltane in the south, as we all celebrate the turning of the year. In Australia, it's the Solstice of Summer but -- as always -- my heart is in the north. 

A Bee in My Christmas Bonnet

The season is almost upon us as I write this, and if I had one wish, it’s that we could both forget the words “motor neurone disease” utterly, completely, for a day. Or even an hour. It’s like being told, “Whatever you do, do not think about a blue horse. Remember: do NOT think about a blue horse!” Naturally, the only thing in your mind is now a blue horse … that’s the way the human brain works.

So, since forgetting about it will be impossible, how about we tackle it head-on, wrestle it down, and throttle it? (The MND, not the blue horse or the brain.) The other day, I had an epiphany. One of those “lightning out of a blue sky” moments where you wonder which guardian angel whispered into your ear. And I listened.

One of the major (and most common) symptoms of MND is hypermetabolism: the body is burning through calories so fast that the patient can barely keep his (or her) weight steady. In fact, many patients literally starve to death, and a lack of body weight is a complication if/when the lungs are dealt a blow like pneumonia…

But why is the body burning through so much fuel? 

The old idea was that this was just another symptom of the body malfunctioning. The newer theory (yes, I read it online) is that the body knows something is wrong, and it’s burning through fuel so fast because it’s trying to cope.

The radar turned on. The body knows there’s something wrong? It’s trying to cope? Okay, let’s run with that. Let’s accept the fact that the body can’t fix what’s wrong (at this moment, nobody can … though acupuncture can take a pretty good crack at it), but it might ― and I say might ― be able to stay two jumps ahead of what’s wrong, and remain functional, perhaps for a loooong time ―

At a cost. There’s a high price to be paid for the body’s desperate attempt to stay ahead of MND: it blazes through fuel. The patient is tired, thin, and getting thinner ― yes, partly from muscle wastage, but also from the loss of fat stores, where that hypermetabolism has just burned them up.

So … the body is working that hard? Hmm, says I. Burning through that much fuel, it’s working like an Olympic athlete. So, how about if it were given the respect an athlete deserves? How about if it were fed in a way commensurate with its effort? Lots of food. The best food. Top nutrition. And sports nutrition. And keep it coming, to facilitate the effort this body is making to do … what?

I have no idea what it’s trying to do, but it’s certainly doing something. You don’t eat 3,000 calories per day and watch them vanish without trace, for no resulting weight gain, without the body doing … well, something. It’s not running races or power lifting. It’s not creating massive heat. But I do remember that when Dave took that fall off the mountain bike and broke eleven bones, then also, he absolutely burned through fuel as the body healed itself. He couldn’t eat enough to keep up.

I have zero idea what the body is trying to do now, but rather than moan about it, I’m going to make an assumption that might be waaay out in left field. It knows. It’s smart enough to know something is wrong, and it’s trying do something about it. So … don’t moan and groan ― help. Feed it like an Olympian, keep the sport nutrition coming. Then, wait and watch. See what happens. (To my knowledge, MND sufferers are never fed like Olympians. This. Does. Not. Happen. So, again, we’re bushwhacking, breaking trail into unknown territory. Experimenting.)

This is the current experiment. I have nothing to report at this time: it’s too soon to know anything, but rest assured, if something comes out of this, I’ll write about it. At the moment, we’re cruising. I’m pleased to report that both the NDIS and life insurance claims were eventually processed, finalized … we’re over those hurdles. The last hurdle is Centrelink ― the Disability Support Pension. That’ll take as long as it takes, and we won’t be able to jiggle any hooks till about the middle of March. Patience, Grasshopper.

So … Christmas. I’m experimenting with Christmas meals that can be pureed and reassembled to produce all the flavours, if not the textures, of traditional dishes. Dave is settled into the routine, and the acupuncture makes a bigger difference than I’d hoped. It seems to be working, knock on wood.

Me? Hanging in here. Keeping busy; back at work (editing, not writing). Starting to think about messing about with images again, for the first time since the end of September, when … well, when the world blew up. Ten weeks feels more like ten years. But the human heart and mind can come to terms with almost anything, and I guess I’m learning to cope. So long as I can hang on to hope, I’ll get through … and with the littlest smidgeon of luck, Dave will be there with me, a long, long time from now.

Don’t Look Back ― You’re Not Going That Way

Don’t Look Back ― You’re Not Going That Way. That’s a Viking proverb, and I would have to say, they “nailed it” right there. One of the first chaplets I posted, quite a while ago, was entitled “Making a Sharp Right Turn,” in reference to the fact that every direction Dave, Mike and I thought we had mapped as our route into the future just changed. We were headed for a semi-prosperous retirement where we were both adventurous and cozy, and it was going to be grand.

Now, Dave has cut back to two shifts per week, and as of this moment, we’re starting to rejig the budget for ― well, everything. A few months ago, we thought there would be funding for whatever we wanted to do. Now? Need to think about the shopping list. Good, innit? This is the first taste of “the oncoming storm” that will actually break like a rainy day that doesn’t know when to quit. We’re won’t be destitute (at least, I don’t think so…), but we must be careful.

The old Mitsubishi Magna that’s getting daggy due to sun damage was due to be replaced soon with a new EV. Well, good old “Lola,” the Magna, will have to go for as long as she’ll go. If she looks shabby, just stop and listen to the snarl of what’s under the hood. She’s the proverbial bat out of hell. She just doesn’t look like it. (Who does?) Sigh.

So we’re trying to look forward, more than the two paltry years the specialists offered. We’re looking way beyond that, and we’re 99% sure we have good reason to. Many people asked to be kept posted about how the acupuncture went ―

And the good news there is that it went sublimely well. It WORKED. Dave walked out of there with more strength in his neck and upper body, a clearer voice, and higher energy levels. And all this lasted at 100% for several days, until a hard ride up a steep hill blew off the whipped cream. His hill ride yesterday left his voice more muffled, though ― to be fair ― today he still feels fantastic, his own word … and the second acupuncture session is tomorrow.

So yes, we’re more confident to look forward, trying to devise plans that take into account the MND, a tighter budget, and the somewhat foreshortened timeframe we might (I say might) have to work to. It’ll take some planning. Many things Dave and I used to love to do together either have stopped or will. Sigh. Again. So…

Find new things. I’m not sure what they’ll be, but I’m certain we’ll find them. In point of fact, we need to START LIVING AGAIN. We’ve both had enough of being a yoyo on a string, bounced around by four specialists, a charity, and the bloody NDIS. (It feels like they own my life, and I’d be shocked if Dave felt differently.) It’s time to draw the line and say, “Enough!! Get out of my face, let me get on with the business of living!!”

And speaking of the NDIS, we’ve come to understand why people utterly despise this National Disability Insurance Scheme. It’s the only safety net you have left these days, and government first funded it, then left it to administrate itself. Smart move. Like that was going to work! End result: you have a hodgepodge, baroque system that doesn’t handshake properly with anything or anyone else … which you discover on the day you apply for their future support (against a time you’ll want a customized electric wheelchair costing as much as a new car. Ye gods).

You send /show them your driver’s license, the lease to your home, and your Permanent Resident Visa, as awarded by government. These are your ID documents, showing who you are, where you live, your right to be here. Every single document is rejected. They’re inarticulate as to why a Driver’s License is no good, but … there you are. They can’t read the scribbled signature on the lease ― no matter that it was issued on a formal company masthead. Your Visa pre-dates the current system, so it doesn’t carry a lot of numbers. It’s a letter from Immigration, welcoming you to the permanent community, while the visa itself is electronic, attached to your passport, good enough for government, police, Immigration, Taxation, Centrelink … but not the NDIS.

At this point, I’ve no clue what they want, therefore I’ve no idea what help, if any, there will ever be for us in future. It’s actually conceivable that we’re on our own, though one doesn’t like to dwell on that. It’s a bridge to cross when we get there, if we ever do. (Take a pill, Jen … chill. It’ll work out in the long run. Maybe. One hopes.)

So ― don’t look back at the things we used to share, plan, and dream. Look forward and find new things to share, plan, dream. We’re not going back, because we can’t. We’re going forward because we have zero choice about the flight of “time’s arrow.” Every one of us is going forward whether we want to or not. So, we might as well look for the best way to get to wherever we’re going. Let the acupuncture do its thing. Buy time. And over the course of many years, we’ll eventually have worked out where we went to get where we are ― if that isn’t too Irish for you.