D-Day. The worst diagnosis in the world

So, what do I feel today? Overwhelmed? Yes. Emotional? Yes. I'm still at the stage where one is likely to cry without notice and then, five minutes later, spring up with clenched fists and say, "I'll be damned if I'll just roll over and play dead." Motor neurone disease is one of the weird ones, and rare enough for there to be a great deal of uncertainty and misunderstanding about it. Its incidence in the general public is increasing every year, though. (Not because people are living longer, because, generally speaking, diagnosis comes waaay earlier than the thresholds of life expectancy.) So, as time goes by, more people than ever will be "living with" this condition, and the uncertainty and misinformation will lessen.

I say "living with" the condition, because when you get your teeth into even the most superficial research, you find that people are living decades with this thing, rather than the three to five year average that your neurologist will  calmly inform you before, shattered and shaking, you walk out of the office and try to force your brain to work.

What's the difference between a three to five year estimate, and the several decades that some people live with MND? Part of it is going to be attitude. As I just said to Julie Thompson, Dave Downes and I have already grabbed this particularly nasty bull by its horns, and I swear, I'll twist its head right off its neck before I let it win.

Why the struggle, if "the end" is inevitable? Because it actually isn't. I have to admit, the emotionless prognosis from that neurologist, not 24 hours ago as yet, left me floored. Yes, shattered. Then you get up, dust yourself down, and you start to learn. Two things come out of even that superficial research.

One: numerous biochemical supplements have a colossal effect on the symptoms of MND. Take them all, and reduce it to the level of a lousy, nagging nuisance. At that level, you can stay fit, stay active, stay strong. The stronger you can stay, for the longest time, the longer your life is going to be. And this is crucial, because --

Two: I was on the Victorian Government's webpage last night. Turns out, there are two kinds of MND. One is genetic, and is ... not. Hold onto your hat. The genetic one will be cured in three years.  Yes, you heard that. Straight from the Vic government, not a crap page trying to sell a scam product. This is the real deal Now, only 5-10% of MND cases are genetic, but if Dave is one of these, he'll be among the very first survivors who quite literally walked away from this, in about 2027. Even if he's among the other 90%, the Victorian Government page quotes that the cure will be along within the decade. 

That's why you stand up and fight. To still be there when the cure happens, about 2034. Along the way, there's already a drug, TGA approved, that will delay the onset of really bad symptoms and extend life by up to 19 months. I'll grab hold of that. Research overseas (I think it's being done in Japan) is focusing on how to use programmed stem cells to replace the dead or dying neurones. 

There's more. A lot more. It's well, well worth getting the sleeves rolled up and fighting hard. That's the plan.

Right here, I want to thank Mike Adamson, my brother, for his help and unstinting support as this journey begins. Kid, I owe you a whole bunch. Dave and I are going to do this. It is GOING to be done.