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.
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.
