Balancing the Energy Budget

Imagine that the energy you have in storage is cash in the bank. Any six-year-old knows you can only make so any withdrawals before the account is empty, so you better spend wisely and bank spare cash when you can for lean times. It’s only common sense.

So, why is it so hard to grasp this, when the same theory is applied to one’s energy reserves? Athletes know this. Go too hard at the start, you might not even make it to the end of this marathon. And any way you slice it, motor neuron disease is a marathon. Even the paltry three-to-five years offered by specialists at time of diagnosis is a marathon. It might not seem like it as you sit in the office, ice-cold and shaking in shock, but you can trust me: each coming day is a year long, and if their ballpark estimate of five years is 1,825 days (yes, I used a calculator), that time is a marathon indeed.

There’s time for good days and bad days. Mistakes and corrections. Setbacks and recoveries. First step: never be afraid or ashamed to make a mistake. Figure what you did ― admit it. But you must learn from the mistake. Don’t repeat it. For instance, in the very early days (not even two weeks ago) I thought it was smart to feed Dave peanut butter smoothies, whipped potatoes, banana cream. I was 20km wide of the mark. That’s a lifetime’s worth of Lectins (read: slow poison) in one day. Yet, this is the official, medical advice to halt the weight loss that results from the disease accelerating one’s metabolism. Put another way, the official advice is for an MND sufferer to jump in and poison himself. And if you question regarding those Lectins, the answer is always “More research is needed to prove that.” Translation: Give us another ten billion dollars. You’ll be milking the cash-cow to a standstill, if she isn’t already dry.

There was a time “much more research” was needed to prove that any galaxy outside the Milky Way even existed. This might sound crazy in 2024, but it was only in 1924 ― 100 years ago ― that proof came of one other galaxy beyond ours. You can thank Edwin Hubble, at Mount Wilson Observatory’s Hooker Telescope, for that irrefutable proof … and yes, before Hubble, (some) geniuses denied that other galaxies existed, or even could exist. The Milky Way was the entire universe.

Same difference with nutrition, and so many other things today. Securing enough proof to satisfy scientists would gobble enough money to build a city on Mars. And this, in an era where funding is scarce because everyone, everywhere, is broke. So…

We’re on our own devices. You have to break trail, bushwhack, be your own guineapig, experiment, record the results ― judge your progress in your number of good days by ratio to your bad ones. If you feel good 55% of the time, you’re winning.

They won’t all be good, because Lesson Two is about that Energy Budget I began with. The human body is a machine, and not even a very well-designed one. It’s filled with flaws that any good engineer would have corrected before even building a prototype. But here we are, and we’re stuck with it. You pay into the Energy Bank by eating and sleeping. You make withdrawals with every movement ― and as any student sitting an exam knows, your brain is chomping through carbs at an alarming rate.

Eating is essential. Power naps. Structured, intelligent exercise. My catchphrase at the moment is, “Always active, never tired.”

The eating must be planned, and if you run with the fact (proven in animal studies) that Lectin toxicity causes cellular apoptosis in motor neurons, you need to rewrite the menu, change how you cook. Power naps must come as you feel your energy starting to deplete. Sleep replenishes it. It just … does. If anybody tells me they want $10b to prove what any living creature has known since childhood, I’ll kick their shins.

Exercise is vital. MND causes the nerves that instruct certain muscle groups to ... fail So, the muscles don’t work as often or as well, and they atrophy. Weaken. Your mission is to get those muscles working, any way you can ― and this is possible. I’ve done the reading. Low/moderate resistance and cardio is recommended, which demonstrates that the MND-affected brain ― like the brain of a stroke survivor ― can find ways to “wire around” bad spots that have gone dark to keep those muscles working. If the brain couldn’t do this, no stroke patient would ever walk again. And they do.

But the Energy Budget must be at the forefront of your mind as you plan anything, a day or an hour. Yesterday, Dave’s batteries flattened disturbingly in the afternoon, after a wonderful start to the day. He woke listening to a garden full of birds, feeling good. Frustrating nonsense in the morning sapping his energy as if it ran down a drain. He crashed out so hard, so fast … well, I got really upset. Negative thoughts invaded my headspace. Frankly, I made myself so bloody ill, I couldn’t eat ― and that’s bad. Negative thoughts will drag you down. Thoughts make molecules. Bad thoughts make baaad molecules. Bad molecules will poison you. So, get into that positive headspace, stay in it … get that Energy Budget balanced, and learn to live again.