As we slowly, gradually, stop panicking and get to grips with the fact that Dave has won the “booby-prize lottery” and has Motor Neuron Disease, our research takes us in so many unexpected directions. Some of them are blind alleys; some lead to official information that is so puerile, it seems to have been written for people who can’t figure out for themselves how to dunk a cookie in a cup of coffee to soften it (yes, that really was the published advice for people who’re having swallowing issues). There are times you want to run around screaming.
The amount of misinformation out there is staggering. Read ten different nutrition specialists, you’ll get ten different theories, and they can not only contradict each other, they can contradict themselves. It would be true to say that their information is likely applicable to most people, most of the time. But what about if you’re not “most” people? About fifty million people in the US alone suffer from autoimmune diseases. That’s way beyond 10% of the population. If that percentage holds true for the whole world, at eight billion ― well, you do the math. And for that many people, diet could be the key to living … or not.
All those foods we thought were so healthy that we almost lived on them ― oats, tomatoes, bell peppers, eggplant, bananas, peanuts, so many more ― well, for most people, they are indeed healthy. But if you have an autoimmune condition, they spell big trouble. Anything from Crohn’s Disease (which was my mom), to arthritis (my grandfather, and me), to MS (that’s is Anna) to MND (that’s Dave) … yep, all autoimmune. So, what’s the deal?
Turns out, in each of these foods there’s a type of proteins called Lectins, and in some unlucky people, certain of these Lectins produce (grasp this and shriek) a neurotoxin that damages and destroys motor neurons. Yes, you read that right. There are loads of so-called healthy foods that are, in fact, slow poisons.
So, for Dave and myself, what’s the next step? Eliminate the Lectins, for a start. As many as you can get rid of. I don’t know how much of the damage caused to his motor neurons is the result of this slow poison, but it makes sense to at least try to “stop the rot,” and do no more damage if you can avoid doing it ... minimize the deterioration in future.
No, I’m not saying that changing your diet will cure MND. It won’t. There is no cure. Get your head around this, and the rest starts to make sense … or, a kind of sense…
What am I feeling today? Let down. Betrayed. I needed science to have the answer to this problem, after about six decades of research and enough funding to send a spacecraft to another star system. Where is the science? Where are the results? Where’s my cure, damnit?! (Calm down, Valkyrie ― put away the battleax, it won’t do any good.) But this is what I feel, in a nutshell. Let down, after spending my whole life ― and as the saying goes, I’m “as old as God” ― believing in science. Where is it when I need it? It’s supposed to be there for me. But it wasn’t there to rescue Carl Sagan, who passed over to the next dimension at the end of 1996 at the age of just 62, and almost 30 years later … it’s not here for Dave.
I’m … perturbed. Diagnosis is one thing, but that’s where the medical engine runs out of steam. All else they can offer is no more than support, literally hand-holding. I can do that myself. I could have done that a thousand years ago. I’ve been reading about the drugs that are currently under test. This is the pinnacle of our achievement: a number of Class A poisons that “may” benefit the patient, if he can live with horrific side effects until it’s time for a ventilator ―
What??!!!
There’s no answer to this, but Dave and I, and Mike, will soldier on. Find ways to do things, ways to live, create the “new normal,” and make it happy, rewarding. Remember, remember, that people can live for decades with MND these days, and several leading universities are expecting MND to be “history,” at quote Sheffield University, inside a decade. Are they right? Are they blindly optimistic? Are they just angling for more funding?
Who knows? But I have to believe they’re not wrong, not lying, and not just milking some cash-cow. The hunt is on for ways to “stop the rot,” improve Dave’s breathing, ease his swallowing, vastly improve his nutrition, stop the weight loss, rehabilitate the atrophied muscles.
Team Dave has (almost) stopped crying and panicking, and is getting its collective act into gear.
Next: Balancing the Energy Budget
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