MND/ALS – a Slow but Determined Thief

It’s easy to compartmentalise the progress of this disease into hands/no hands, speech/no speech etc. In fact the onset is progressive: the part that’s relevant to our conversations here are a slow robbing of finger, hand, then arm function. Whilst this is distressing it does at least allow us to plan, adapt and set up new tools and workflows for the dimmer end of the journey.

Sitting on the edge of a wet mud-hole

Hiram Salvini has a serious case of ALS. He can’t move or talk and uses his eyes to type words into a computer, which then speaks for him. Source: Photo by Richard Gwin.

There is no escaping it, this disease is a bummer, ask Professor Steven Hawking, he’s lived with it for around 50 years. Most of us have a clue what’s around the corner just before we get there, but the news may have come out of the blue. Either way, your keyboard smokes driving Google to provide its version of a crystal-ball to paw over.  The end-game becomes apparent – this disease has the potential to leave its host with only their eye muscles working unaffected. Some end, and what a game.

The MND crowd tend to be stoics to their toenails, they plan for the worst whilst hoping for the best. That would be for a cure of course (there isn’t one – yet). Yet we are defined not by what happens to us, but how we respond to fortune, be good or ill.