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.

Trying to bumble my way through

Last  week was hard, even harder than last week, trying to bumble my way through life without constant reminders.

This in turn shows, that the constant reminders in memory tests are a waste of time, because in normal life, we don’t have the benefit of constant reminders to get us through the day.

We either get it right or fail completely

However the last set of memory tests did so much damage as far as stress was concerned, I confess that I dread the next ones coming.

I admit that the normal tests are not as long, and are less stressful, so it’s not as bad, but the last ones for the research group left me feeling stressed and very tired for days after.

Your life changes because, if you don’t understand words, you break them down in the hope of being able to say them properly. You  may not have a clue about what the word means, but like reading a book, you have to attempt to break the word up into sections in the hope of trying to say it.

However trying to muddle your way through a normal day can be stressful enough, while trying to make sure that we don’t do, or say the wrong thing, and I don’t think people consider this when discussing this illness. 

People these days are not so forgiving if you say the wrong thing by mistake, or do the wrong thing. It’s only later, or when told that you understand what you have done. 

Different week

Last week we went in a coach holiday to the Isle of Wight, but I found it to be stressful, but

I think this was because we knew no one else on the coach. 

My wife said yesterday, that if the dementia researchers had been around over the last week or so, they would have seen a different side of me, and I would probably have answered all of the questions differently.

When I am out of my comfort zone things go completely wrong, and it’s times like this that I need my wife’s support.

Even meal times were difficult, because we had two other people sat with us, and I was terrified of saying or doing the wrong things. 

My wife always looked at the menu outside the dining room, and explained what was coming, so that there was no awkward questions at the table. 

Once it’s been decided what I want, my wife  always helps out when the waiter comes along, and I am very grateful for this because ordering can be stressful these days.

Looking back I was always independent, but things are so different these days, and even things like going to the toilet can be so terrifying, but I guess these places are not dementia friendly, and there are usually people running left right and centre, which makes it difficult to stay upright and not make a fool of myself. 

I just don’t cope when people walk across in front of me, and I know that without my stick, I would end up on the floor, because of my poor balance. 

Toilet signs are difficult to work out these days, but Janice always points me in the right direction then it’s up to me.

When things first went wrong, I always said the ladies toilet sign was a person with a skirt on, while the gents  was just a person with two legs, but these days these signs can change quite a lot, and in some cases they are unrecognisable.   

If I am not sure, I head for the disabled toilet for safety. 

I think this tour was too far for me, as I struggled with the long journey, and this is frightening because we are going to the Isle of Skye at the end of the month with our church.

Although the journey is about the same, the breaks for a rest are usually longer, and people are always more patient with me because many of them know me and are understanding

I guess we will just have to wait and see what happens.