Showing posts from 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…

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 da…

Different week

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