Living with Lewy Body Dementia 

Torbay Weekly

What you are about to read are actual, real time events that happen to me because of my Lewy Body Dementia (LBD), this is not fiction but the consequences of having this awful type of dementia.

When you mention the word dementia, most people automatically think 'Alzheimer’s' straight away and don’t give any other types of dementia a second thought, and yet I have met so so many people who have had the same symptoms as I have, yet are diagnosed with Alzheimer’s and not Lewy Body.

I, myself, was wrongly diagnosed at first. This is not written to scare people or make them fear this disease but to explain to them what some professionals won't.

They don’t tell you about the night terrors, the hallucinations, the loss of life skills and so on, they seem to shy from this, and when things like this start to happen, the loved ones are at a total loss as what to do, and because it’s not been spoken about, then they don’t 'like to talk about it' as they say, and it becomes spoken about in whispers.

Here at the Purple Angel, especially at our memory café, we will talk to you about this and have all sorts of information to help you get through things like this. We want to help.

A not-so-typical night

As I stood there, fists clenched, teeth gnarled and screaming like a banshee, somewhere in the distance I could hear Elaine’s voice.

I could barely make out what she was saying. It eventually became a little clearer that she was saying 'you're safe, Norrms, you're safe, I`m here, you haven’t lost me'.

Only minutes before I was thrashing through the water, trying to find her, trying to save her, I kept diving underwater frantically trying to find where she had gone.

This happened just after we were driving up a road when a huge flood came thundering down the hill and hit us.

It threw us high up into the air and down into the murky depths. Seconds turned into agonising minutes and what seemed like hours had passed as I continually screamed with lungs full of water, Elaine’s name, time and time again, but I still couldn't find her.

Panic started to set in and I felt as if my whole being was being punished from within.

'You're safe, Norrms', hold on to me, please, I am here' came the voice, and as I came out of my hallucination, I realised I was still at home, safe in the arms of my very own angel.

This was only the start of what turned out to be one of the worst nights I have had for a long time.

Earlier in the week I had seen sparrows flying around the front room and sat amazed as they flitted from chair to chair, and even smiled when one flew just past my nose.

None of this was real to anybody else, of course, only me, but just my Lewy Body disease visiting me, playing with my mind, trying to rob me of my sanity and drag me into the abyss!

Last night was a very bad night, after what has been a very good week, no rhyme, no reason, just Lewy Body doing its worst.

But it hasn't reckoned on the strength of my angel Elaine and the support I receive from oh, so many.

Am I tired? Heck, yes! Am I weary? Heck, yes! Are we having an early night tonight? Heck, yes!

Are we defeated? Heck, no!