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Showing posts from May, 2014

Hard week

This has been a very long week, made even worse by the fact that I am not sleeping well.



The wheels came off on Wednesday night when I went to bed at 10 pm because I was exhausted
. I then woke up at around 1 am and could not get back to sleep until around 5 am, but got up again at around 6-15


The next night was exactly the same so I was getting to be shattered.


My MP3 player and my music were well used during these two nights, but I was pleased that I had this at my side.


The following night I went into a very bad graphic nightmare at around 2 am, and did not get the sleep again until around 4-30, but then got up at 6am


I was so shattered on the Sunday afternoon that I went to have a lie down on the bed! but got quite a shock when I had a nightmare after half an hour.


Normally I get some good quality sleep on an afternoon, and even half an hour fels like I have slept for days.


So to have a nightmare during the day gave me quite a shock.


It's times like this that I really hate th…

Looking back over the week

I have had a chance to look back over the week now starting with the visit to see the new consultant, and now feel more confused than ever.



I guess this is because she asked why no one had looked into the Parkinson disease side of the Lewy body dementia.


But having looked into it, there are a lot of things which could be caused by either illness, and I suppose until I see a specialist in parkinsons I will not understand it any better.


I now know that parkinsons could be causing my eyesight problems, which have now come back, but I am not going back to the eye hospital as I feel that it could complicate things.


I had never been told that parkinsons could cause blurred or double vision, which is a pity as it could explain everything.


I was talking about my fear of going down stairs the other day, then my wife pointed out, that when we are out shopping etc, she always goes down stairs or on the elevator in front of me.


I confess that I had not realised this, but now it makes sense, as …

New consultant and more tests

Yesterday I saw a new consultant about my Lewy body dementia and came away very positive apart from the neurological tests and questions where they ask questions and give prompts.

 In real life we never get prompts for the things I kept forgetting to do.

However I have spent many hours a week doing things like solitaire puzzles and mah jong, which can be addictive, but my my wife is convinced that this is helping my brain remain active.  

However I am being sent for some new tests to see what is causing the tremors in my right hand, this is to see the Parkinson specialist, to check whether it is Parkinson's related, or if something else is behind it.
I also have to see the physiotherapist about my falls and dizziness, so hopefully things are now starting to move.
I had more tests than enough at the clinic, but I could not remember what they were all for. However  my wife said that she felt positive that a consultant was actually trying her ber to get the bottom of the problems so…

Visuoperceptual difficulties in dementia

After having around a year of eye tests, and now finding that things are no different, I started to look for more information, and today I found this sheet on the Alzheimer's Societies web site.

I now know that these problems are caused by the illness, and by copying this web page I hope it helps others


This factsheet considers some specific visuoperceptual difficulties that people with dementia can have,
and possible ways of helping them.

Understanding potential perceptual problems and intervening with
appropriate help, support and reassurance can greatly assist people with dementia to feel safe in their
changing perceived reality.

 People with dementia can experience a number of visuoperceptual difficulties due to normal ageing,
eye conditions, and sometimes from additional damage to the visual system caused by specific types
of dementia.

Vision difficulties can result in a variety of 'visual mistakes' (including illusions, misperceptions,
misidentifications and sometime…

Animals in dementia

I looked at this topic in 2014, and I think its important these days

There are lots of stories these days about using animals in houses and care homes, and it was only after talking about this with my wife, that some memories came back about our pets at home.



When this illness was starting to kick in we had a cat and a dog, who got on quite well.


 At first the cat would come and either sit beside me on a seat, or would lie next to me on the bed when I was worried about what was happening. Sadly she passed away and was a great loss not just to the humans but also Ben our Labrador cross dog.


Ben had his own problems with his nerves and did not like loud noises, something that I was able to understand, when my own hearing became acute due to the Lewy body dementia.


But Ben would follow me closely when I was being diagnosed, and never let me out of his sight.
Although this was nice, it also drove me mad at times, because if I went to the bathroom, he would be sat out side the door when I…

Where does all the information disappear too

When this illness kicked in I was devastated, as all of my electrical experience was disappearing fast.



I often wonder where all of this stuff disappears to, as it gave spoken to other people who still remember how to do their jobs, yet mine is virtually gone


I was a university college engineer, and spent most of my time doing electrical work, and my son took a great interest in my job, apart from the paperwork and decided early on to follow suite.


I often talk to my son, who became an electrician after watching me at work, and he has talked about my job and the things I once did, like retiring the college chapel, yet here I am unable to fit a 13 amp plug these days.


Having someone like Mark to talk to too, is helpful, but also distressing wondering what happened to wipe so much information from my memory. Sometimes odd bits come back, which I try to fit into place, but that's it.


After my diagnosis, I occasionally picked up my last electrical exam papers, in the hope that someth…

We don't suffer from dementia

I get really annoyed with professionals who keep talking about people suffering from dementia.



It's like those who insist that dementia is an age related illness when it's clearly not, as there are around 17,000 thousand people under the age of 65, who have one form of dementia or another.


 Everyone with dementia that  I have spoken to, says that they don't suffer from it, but we all struggle with it.


I simply do not understand these comments from these professionals,  like those who talk about people dying with dementia, another phrase which is wrong, because we die from complications not from dementia.


To me someone who is suffering from an illness is in pain. 


It's one of those phrases which to me is misused, by many, because it's used in all illnesses, but it does not describe the illness at all.


The term living with, or in the early stages, living well with dementia is more fitting, to describe our lives.


Yes it's distressing and upsetting when your losing…

Odd time

Over the last couple of years I have had problems with on foot catching the ground occasionally, and sometimes hit the ground.



Other times I have managed to save myself from doing any serious damage.


This is now getting worse, and it's happened so much that I now have a very sore hip and knee.
My main problem is I suppose pride, as with all men


My wife is always telling me to use a walking stick, but my pride gets in the way, but now I realise that she us right, and in am going to gave to use this whether I like it or not.


My days of long walks have started to disappear, as it's too painful, so if this helps I just have to accept it and move on.


One of the problems with a stock is that I keep kicking it as the foot which catches the ground is also stocking out at an angle, and this causes a few problems, too.


I am not sure whether this is yet another part of the Lewy Body Dementia or not, but may be I will find out when I see the new consultant this month.