Sunday 28 April 2019

Horrors return again

Originally written  2012

Like many people who are living with Parkinsons/ Lewy Body dementia problems, I suffer from nightly horrors and very graphic nightmares which can be very stressful

Last year my consultant put me on a new drug, which it was hoped would help cut down these horrors, and for a while it worked, but over the last few weeks it has started all over again.

 These started a few years ago when I was diagnosed as having a form of Lewy Body Dementia / Parkinsonism.  

The problem being that you act these graphic nightmares out, and can remember them in great detail during the next day, something which is quite frightening. 

Nurses in hospitals etc, are told to speak quietly and touch the person going through these, in the hope of bringing them out of this, but as I pointed out to graduate nurses while giving a presentation last year, this can be highly dangerous to anyone trying to help.

My  wife has found out at times, that is hazardous, because she  can become part of the nightmare, and then get hurt in the process, and she has a good idea what its like, as she has become part of this when she gets too close. 
My wife tried this one night, and ended up with a nasty black eye and bruises after one nightly horror show, and that was upsetting for me, as well as for her.

Having totally demolished two bedside lights and other things, there is now nothing important next to my side of the bed.

After seeing the damage after a bad night, it brings you down to earth a little 

But I could describe everything in great detail, when I wake up,  which is not nice. 

I understand that  I lash out and kick out, once these things start. 

There seems to be no reason for these, as many of them bare no links to reality, and that makes life hard to work out.
Last year my consultant gave me a trial of some medication, in the hope that it would help, which it did for a while then the horrors started all over again a few weeks ago.

After a nightmare, if I am lucky enough to wake up on my own, I usually get up, and either sit in the bathroom, or go downstairs for a while, if I am not feeling wobbly. 

However sometimes,  these things start off all over again from where they had stopped, and that is terrifying 

I think part of the problem is that when I  wake up, I cannot tell the difference between the nightmare or reality, and it seems to take a while to settle down.

A few years ago after a flood damaged our home we were moved into a small flat, and one night I had the worst night I had ever had. 

I was convinced that I had woken up from a nightmare and had gone into the sitting room, had a cup of tea, and had then gone to the toilet. This happened three times, then I eventually woke up and realised that it was all part of the nightmare. 

My wife said I woke up in a total  panic 

Although there was no damage at all, this  shook me rigid because I was convinced that I had been up three times, and had gone to the toilet. 

I confess that I am absolutely terrified of ever being sent into a hospital, because I have no control over what happens during these nights, and the last thing I want is to be charged with assaulting a nurse or anyone else, while I am going through a night like this. 

Although things are not as bad as they used to be, it's still difficult to understand. 

I often wake up in a morning feeling very tired and sometimes ache, I guess because of the lashing out. 

While it's difficult for me it must be worse for my wife, because it means that she must keep her distance while trying to wake me up 

When this all started, I thought that I was going mad,  but I understand that it's all part of the Lewy Body Dementia. 

Perhaps it also accounts for my deep sleeping during the day.

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I always say that we may have this illness, but we are all so different.

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