January 31st, 2025 -- This Was January: Finding a Rhythm

January 31, 2025

I don’t post very often these days. The reason is simple: there’s nothing to post about (unless I whine and grumble…and I could to plenty of that, but I won’t). By now, most friends and family must be a weary of MND stories, and I don’t blame them. I’m tired of it myself. If I could shrug it off, “go back to normal,” I would! But―here we are, trying determinedly to find a new normal. A new rhythm to carry us through months and years, and do it pleasantly. Life must be pleasant, with a certain sweetness, before you can call it “Life.” Anything else is…existing. Hmm.

So, let’s call this The January Report, which I’m filing as February opens. Here goes.

As I write, the air is smoky, hazy; I have “vampire eyes and smarting sinuses. The fires are not local―they’re over the border in Victoria. My heart goes out to our neighbours. Breathing their smoke is bad enough. Sigh. We’ve welcomed in what, as kids, some of us used to call the February Dragon, from Colin Thiele’s bushfire novel of the same name. February is an oven, and a dangerous one.
Our seasonal dragon inspires the longing for coolness, greenness, misty mornings, rainy evenings, the skirl of the wind in autumn’s bare branches, the crunch of fallen leaves as one walks a woodland trail. Little of this happens in Australia at any time of year, and if you do get close―it’s winter. Yes, I confess: there are times (this is one of them) when I get rather homesick for a land I haven’t even seen for 54 years. It’s strange. Rather painful but at the same time oddly sweet, perhaps because it gives me something to look forward to in a future I still dream about.

The pace of life has slowed, and it can afford to. Dave has just seven shifts left to work, including today’s. His last is March 16, then he’s retired. Actually, he’ll swap one job for another: his new job is himself. Health, strength, fitness, continued survival pending the next drug or gene therapy, the next, and next, till The Cure materializes―

We visited Tim (the GP) two days ago, and I happened to mention how we keep up with the research and see ample reason to be “guardedly optimistic.” No surprise from Tim, who agrees. This is the proverbial medical professional agreeing that re: survival of this lousy disorder, as of now one can afford guarded optimism. If (and it’s a monstrous “if”) one is proactive, gets out of the chair, and invests the work in one’s own survival.

And it is work. Hard work that never ends. It’s about nutrition, supplementation, exercise, meditation. Kriya, Qigong, acupuncture, physiotherapy, and a “magic factor.” The element we can’t quantify or label because it’s different for everyone. Allan Watts described it 50 years ago; everyone from Joe Dispenza (who approaches this from a scientific platform) to Darryl Anka (who packages similar messages in a delicious science fiction wrapper that one either loves or hates: yep, I love it in the same way I adore Stargate. SF. Sweet! Duh). Basically, find whatever makes your heart sing, because when your passion consumes you, you’re “in the zone.” Chi is rising; time stops; brain and heart pull in concert instead of in different directions; you feel great. And in that zone, nothing―not even MND―can touch you. Get in the zone. Stay in it!

For Dave, it’s cycling. His big news is Happy the eBike, which puts him back on the road, swooping down hills, riding country roads with glorious views. Happy is pedal-assist, meaning Dave must work, which translates into exercise, which keeps heart and lungs tip-top, maintaining muscle mass the disorder is trying to destroy. Cycling is therapy―physical, mental, everything. Oh, it works.

No surprise, then: last week, Dave’s neurologist reported no deterioration after three months. Remission. Check. Now, how long can we extend this? I ask myself: how many newly-diagnosed patients hasten their own demise by following doctors’ orders and doing…nothing. Medicine offers no treatment, just support services to keep one comfortable through the long fade to black. Dave’s prognosis was two years. Well, with no deterioration to report, that picture just changed radically. Now, there’s a result!

 
The neurologist ordered bloods to seek genetic markers. They’re in the process of IDing this beast’s genetic triggers. When they’re known, they can be switched off. Months ago, our acupuncturist insisted that all cases (not just some) are genetic. His branch of medicine is endeavouring to use laser acupuncture to switch off those genes. It’s worth noting that literally the day acupuncture began, Dave started to improve. It’s as if he’s on the mend, though the process is long, slow, and dang hard work.

So, life is slow, uneventful. A new show we’re enjoying on Britbox is a major deal (Shakespeare and Hathaway, a fun cosy mystery). Learning how to use meditation to escape into the maze of quantum probabilities―I kid you not!—is huge fun. It’s made me happier than I’ve been in eons. With bushwalking and photography off the menu (for the time being: no negativity allowed here!), my passion has become editing and writing. That’s where I get “into the zone.” Hiking and cameras can return whenever ―there’s no rush. I’ve already returned to pro writing, and will keep you posted when there’s news. That’s absolutely all that’s going on with me, personally.

There’s a new med for the saliva issue (thanks for the tip, Anna), and the last bloods showed that Dave’s liver has adapted to the Riluzole and returned to normal. So, oh yes, we’re doing this. Tangible results. As I said―optimistic. She says, smiling.

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.