Diagnosed with ALS

The upsides of being diagnosed with ALS


Let’s face it, if you’re going to be diagnosed with a Terminal Disease – ALS is the one to go for.

After all, there’s no pain or nausea (unlike lots of other nasty diseases), and while we can still move we’ve got plenty of time to rearrange our home environment for disabled living (unlike people who are paralyzed in an accident). Already, we’re up on the game.

And that just leaves the pesky issue of it being a Terminal Disease.

Except that it’s not.

Despite the fact that everywhere you’ll find the helpful statistic that if you’ve got ALS you’re likely to be dead two-to-five years after you’re diagnosed – this is utterly misleading. It turns out that the Terminal component of ALS is very largely negotiable.

It primarily depends on whether you choose to take the actions needed to let you live. It’s not likely to be the disease that kills you. It’s you. If that’s what you want.

ALS is not really a Terminal Disease. These days, ALS is far closer to an incurable Chronic Disease. It’s not yet treatable to any great extent. But, throw the right technology at it and it’s very unlikely to kill you in “two-to-five years” either. Unless you let it.

Have a feeding tube long before you dehydrate or become undernourished. Have noninvasive ventilation – and then a full tracheostomy – before you struggle to breathe at night. Adopt a rigorous protocol to manage the risks of pneumonia.

And you’ll very likely be around for a long time.

Even better, if you worry you won’t be able to stand eventually being Locked In (although, with modern technology, you’ll have lots of great toys to bring a bit of fun to the proceedings) then there’s another massive advantage to ALS. If it really ever gets too much for you, you can always opt out of your life-support without the hassle of going to Switzerland. This is the diagnosis that keeps on giving.

So, I say again, if you’re going to be diagnosed with a Terminal Disease, ALS wins hands down. For as long as you want to stay around.

And I for one am not going anywhere…