Regular columnist Norrms McNamara reflects on what it’s like to live with Lewy body dementia (LBD).

During the night last night, I sat up in my bed, looked down and saw my wife who was sleeping peacefully beside me, apparently unaware that the computer screen was flashing on and off.

I sat upright in bed and rubbed my eyes as it flashed and flashed, sometimes quickly, sometimes slowly, then the screen came on a brilliant white.

After a few seconds, I was just about to get up to see what was going on when all sorts of jumbled up letters began appearing across the screen, jetting backward and forwards, not making any sense, not making any words, just random letters zig-zagging up and down.

Then the zig-zagging stopped and a sentence appeared. I strained my eyes to see what it said and the sentence just grew bigger and bigger. Then it started to roll down like an old-fashioned music box on top of an old piano that used to play music by itself. I couldn’t believe my wife hadn’t even moved as she is such a light sleeper.

Then, just as I made a move to get out of bed, I felt it. It was only light at first, but then felt like something was grabbing me. It felt so small, almost like a baby’s hands, then another, then another, until all I could feel were tiny hands clawing at the small of my back and sides, nipping me, scratching me and, even more terrifying, trying to pull me into the mattress below.

My own hands went around the back of me as I tried to swat the hands away. I looked at the computer screen, which was going crazy now, and all sorts of noises were coming from it. I screamed, and screamed again, and then – as quickly as it had happened, it stopped.

Elaine was by my side holding me, reassuring me and telling me it was all a hallucination. I could do nothing but shake and weep for the next 10 minutes saying over and over again: “Nobody knows, nobody knows…” while Elaine held me.

I have been through this so many times of late, once even in the afternoon a couple of weeks ago while out and about, and it never gets any easier. Some I remember; some I don’t. This one has stayed with me all day and even as I type I can almost feel the hands around my waist and it makes me shudder.

Till next time…