What is it like?

What does it actually feel like as your body slowly shuts down?



Able-bodied neurologists and neurophysiotherapists keep trying, very professionally I must add, to empathise with what I am feeling: “I know, it’s like walking with lead boots.” I can’t help but wonder if this is the stock phrase that’s been used for generations in ancient ivy-covered Schools of Neurology and Neurophysiotherapy. It’s bound to have got into the odd textbook. It may even be carved into the classroom walls. It’s certainly very graphic. It instantly conveys what it must feel like. It’s an excellent simile.

The only trouble is, it’s wrong.

My weakening arms and legs do not feel like I’m in lead boots. Nor (let me save some time here) do they feel like the fall-back phrase that neurologists and neurophysiotherapists seem next to come up with: “Ah, I see, you mean it’s like wading through treacle?”

It’s a weirder feeling that either of those.

Yes, it is hard to lift my leg (as if wearing a lead boot or wading through treacle). But it’s just as hard to put it down again. [OK, I concede, that is like wading through treacle.] BUT, here’s the thing. Once it’s moving, there’s not really any more resistance than you’d expect. It’s getting it moving that’s the challenge.

The closest analogy I can draw is that it’s like using a Remote Control when the batteries are low. You press a button. Nothing happens. You press several times. Maybe something happens. You hold a button down, and eventually something happens. But you can’t predict exactly when.

Meanwhile, if I do try to use the muscles, my legs and arms feel like I’m using them the day after an enormous workout at the gym. Exhausted. Tired out. Weak as a baby. Even though I haven’t done a thing.



This one is very strange. Not really like anything you experience in normal life. Either one of my legs spontaneously and very rhythmically jerks up and down. And doesn’t stop. Ever. Until I get bored and someone repositions it.

I can accidentally trigger clonus in both legs – which sets me flailing about as if I have cerebral palsy (which often also exhibits clonus). The legs can even trigger in antiphase – one going up while the other goes down. Which just looks silly.

Imagine when a doctor checks your reflexes by hitting just below your knee and your leg shoots out. That’s the level of control I have. None.

But it’s stranger than that. There’s absolutely no pain, or even discomfort. But there’s also absolutely no effort involved either. I can sit for minutes with one or both legs violently bouncing up and down at about a hundred bounces a minute. And I’m completely relaxed. If you’ve ever tried one of those electric stimulation devices designed to exercise your muscles while you watch TV, it’s a bit like that. But without the mild electric shocks. Nothing. Just an invisible force painlessly bouncing you up and down. Whether you want it to or not…