Monday, 26 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 this illness

Friday, 23 May 2014

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 the times which concern me are usually first thing in the morning.

I have been struggling at night again, as I cannot always work out what is real and what is just in the brain. Like many people I need to get up during the night, but it's getting more and more difficult to stay focused.

 I think these problems are caused by the graphic dreams and nightmares, so graphic that I look back and wonder" did I get up and go to the toilet" or was it part of the nightly horrors. I wonder if this is called delusion.

This gets so graphic that it's very frightening at times.

I now realise that while this is going on I cannot go away for a holiday, as the insurance company will now stop it until we get some concrete answers.

Still I just have to try to stay positive and wait 

Tuesday, 20 May 2014

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 that life can be made a little bit easier.

I have noticed that I now struggle to get down stairs, but I am determined to fight this. It seems as it it's a long way down, when I am stood at the top of the stairs, and I am not sure what to hang on to, whether this has turned into a fear of heights I am not sure, but hopefully it will be sorted out soon.

At least I could understand this consultant which was a great help.

Monday, 19 May 2014

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 sometimes even hallucinations).

 They can cause a person with dementia to
misinterpret their environment and what is in it. The consequences of such difficulties can be more
severe for people with dementia than for people without, since they may not know (or remember) that
they are making 'visual mistakes', or be rational or able to 'test reality' accurately. They may also have
difficulty explaining what they have seen.

Visuoperceptual difficulties have been reported for a number of dementias including Alzheimer's
disease, dementia related to Parkinson's disease, Lewy body dementia, and vascular dementia (if
stroke-type damage is on or near to the visual pathway in the brain). Of the various types of dementia,
the visual difficulties in Alzheimer's disease have been most studied to date.

Visual perception is complex since, whether people have good vision or not, they try to interpret and
understand what they see. Sometimes trying to understand what was 'poorly seen' involves making a
'best guess' at what was seen. If what we perceive seems real to us, it can directly affect our

Accurate perception
Although 'vision' usually refers to seeing with the eyes, and 'perceiving' refers to making sense of the
information that the eyes (and the other senses) are receiving, the two words are often used

To perceive accurately requires the ability to co-ordinate all the components of the visual system
(eyes, optic muscles, retinas, optic nerve) and process information from other senses and thoughts. It
also depends on overall health of the body, visual system and brain, alertness, mood, motivation and
1even the expectation of what 'should' be seen. Accurate vision also requires the co-ordination of every
aspect of our cognitive (thinking) ability to manage and make sense of visual information (Jones G M
M et al, 2006a).

There are many components to vision: adjusting and maintaining optimal focus; adjusting to different
light levels; perceiving depth of field, black and white, colour, lines, objects, faces; distinguishing
between faces; separating objects from background; making the accurate small eye movements
required to follow moving objects and scan information. There are also many possible types and
combinations of visual difficulties.

Advances in the neuroscientific understanding of normal vision are helping to better understand visual
changes resulting from ageing, use of medication, illness or injury, and specific types of dementia.

Normal age-related changes in vision

Visual changes resulting from normal ageing can include:
. reduced visual acuity (sharpness - nearby objects become blurred first)
. an increase in the amount of light needed to see
. an increase in the negative effects of glare
. more time required to adapt to marked changes in light level (from dark to light or vice versa)
. a reduction in size of the peripheral visual field
. decreased contrast sensitivity
. decreased depth perception
. changed colour vision (increased colour saturation required to see colours - gradual loss of the
blue/violet part of the colour spectrum - dark colours and pastel shades become increasingly
difficult to distinguish between)
. changes in the small eye movements (used to track moving objects, orientate oneself in new
locations, and to read)
. blurring from 'floaters' (clumps of cellular debris in the vitreous humour gel in the eye)
. light flashes or momentary distortion of images (when vitreous humour in the eye begins to
pull away from the retina)
. decreased ability to perceive the flickering of strobe lighting.
Most people have regular sight tests and adjust automatically to their changing vision as they get
older. They can use glasses, accurately problem-solve, or learn to compensate for visual changes.
However, people with dementia, increasingly, may not be able to do this.
Illnesses, drugs and medications can affect vision
As well as the effects of normal ageing on the visual system, a number of visual disorders are
commonly associated with ageing. These include cataracts, glaucoma, macular degeneration and
retinal complications from diabetes. These can all result in changes such as blurring, partial loss of
visual field, through to genuine visual hallucinations and complete blindness.
Use of alcohol and other recreational drugs can also affect vision, as can withdrawal from them.
2Sometimes medications can cause or contribute to visual difficulties. A surprising number of
medications commonly taken by older people can have visual side-effects. They include some drugs
from the following categories: cardiovascular, non steroidal anti-inflammatory, antibiotics,
anti-Parkinson, and even eye medications.
Additional visual difficulties in some types of dementia
There can also be additional visuoperceptual difficulties in dementia related to Parkinson's disease
and Lewy body dementia. In vascular dementia, if strokes occur along or near the visual pathway, a
wide range of visuoperceptual difficulties, including hallucinations, can result. Importantly, changes in
vision from strokes may not be noticed by an individual.
Currently, most is known about damage to the visual system in Alzheimer's disease (and 'posterior
cortical atrophy', a rare variant of Alzheimer's disease, see Factsheet 479). The 'plaque and tangle'
damage which characterises Alzheimer's disease, initially accumulates in the brain areas linked to
memory for processing new factual information. It lies close to a part of the visual pathway, which can
also become affected from the spread of plaque and tangles. Later, other parts of the visual pathway
can also be involved. Difficulties in both primary and complex visual functioning have been described
for Alzheimer's disease. (Note that some of these are similar to those described for normal ageing.
However they can occur independently from, or in addition to, normal age-related visual changes and
visual illness.)
Specific difficulties that have been reported in Alzheimer's disease include:
. reduction in number and accuracy of small eye movements
. colour perception (loss of the blue, purple, green part of the spectrum)
. figure-background contrast discrimination
. depth and motion perception
. visual acuity (but not initially)
. object and facial recognition.
Some noticeable consequences of such problems include difficulties with:
. assembling puzzles
. reading books, or doing visual tasks involving close eye movements
. watching TV shows with rapidly moving images.
Less obvious difficulties may involve the ability to:
. play board games
. keep handwriting in horizontal lines
. find objects readily (even though they may be in front of a person)
. copy images accurately
. walk or mobilise confidently.

Evidence for the types and range of visual difficulties that can occur comes from special types of sight
3testing and scans, from people's accounts of their own difficulties, and from careful observations of the
visual errors repeatedly made. These include such things as:
. difficulty re-adjusting one's spatial orientation when moving around (even in familiar
environments like walking in one's own neighbourhood)
. difficulty driving when rapidly changing information needs to be analysed and accurately
responded to
. difficulty judging the height of the floor when the colour flooring changes (colour illusions,
figure-background and depth of field difficulties can make surfaces difficult to judge)
. high-stepping over carpet rods or shadows, thinking they signify a change of level
. difficulty problem solving visual illusion effects (for example, when going downstairs -
determining how many steps there are, and where the next one is; going upstairs is not
usually a problem)
. resisting walking on shiny flooring because it looks wet or slippery
. walking on the darkest patterns (or shadows) of flooring to try to avoid falling
. misinterpreting reflections in mirrors, windows or shiny surfaces (refusal to go into a toilet
because reflections make them appear to be occupied; fear of an 'unknown person who keeps
disappearing' being present)
. mistaking TV images for real people ('little people') because they are brighter and more visible
than a TV console located against a dark background
. inability to find a particular item (eg handbag, clothing) even though the item is in front of a
person and appears to be in their field of vision (this can make it difficult even to locate
someone's hand to be able to return a handshake).
. difficulty in locating people or objects because of other distracting or competing visual
information (such as patterned wallpaper).
. difficulty in positioning oneself accurately to sit down in a chair, on the bed, on the toilet
(difficulty estimating depth of field, especially if the objects are behind a person, out of view;
some people make multiple checks but still have difficulty and may even try to straddle them
from the front. Note that such difficulty may be mistaken for incontinence)
. inability to find objects or places because of a lack of colour contrast (for example, not seeing
there is cauliflower and pasta on a white plate, or not seeing doors painted the same colour as
the walls)
. restlessness from visually over-stimulating environments (eg too many shiny Christmas
decorations in some care settings that can mask important orientation cues).
As seen from the examples above, visual difficulties can affect many aspects of a person's daily
functioning. If people with dementia are living in their own home with carers who are helping them, the
real extent of their visual difficulties may not be apparent until they experience a change in
environment, like going out shopping, on an outing, or on holiday.
Visual difficulties and 'perceived obstacles' can make a person more fearful of falling, and slow down
their movements while they try to walk safely. If carers and companions understand this, they can try
to anticipate situations which will likely pose perceptual difficulties, help explain what is being
encountered, offer their arm for support, offer encouragement, and slow down their own movements
around a person with dementia.
4Categories of visual mistakes
With improved neuroscientific understanding of the visual system, it is possible to categorise different
types of visual mistakes. Some examples are listed below. Although hallucinations are perhaps the
best known, recent research (Jones G M M et al, 2006b) suggests they may be rarer than previously
thought because other categories of visual mistakes have not previously received much attention.
Illusions - a 'distortion of reality' resulting from some physical property or characteristic of the image
(reflection, shiny or bright surface, poor figure/background contrast, timing of presentation, etc).
Example: a person mistook the distorted reflection of a doorstop in a cylindrical, shiny, stainless steel
bin, for there being a 'mouse in the bin'.
Misperceptions - a best guess at inaccurate, degraded or distorted visual information (usually as a
result of damage to the visual system). Misperceptions can be influenced by motivation, previous
experience and expectation.
Example: a dark stain on the carpet was mistaken for a rat.
Example: walking down a long, dark corridor with benches along the wall resulted in a person with
dementia thinking she was at a train station.
Misperceptions of illusions - what is already incorrectly seen, may be seen as even more distorted
by a damaged visual system.
Example: a gentleman who approached a lift that had three large mirrors in it, mistook himself
reflected three times for a crowd of people who would not move to allow him in.
Misidentifications (agnosias) - incorrectly identifying objects and people resulting from damage to
specific locations of the visual cortex.
Example: a gentleman tried to use the black remote control for the TV to shave with.
Example: a mistaken thought that a large statue of a dog was real resulted in food being thrown at it
Example: inability to distinguish accurately between a son, husband, and brother.
Misnaming what has been seen (or assumed to be present) - this can result from difficulties to
retrieve the nouns and words to describe what is being seen accurately, or from making time
perception errors and using tenses inaccurately.
Example: A collection of metal zimmer frames piled up at the end of the corridor was referred to as
'the robots'.
Example: A lady who was severely disoriented in time thought her children were still young and living
at home. She cautioned her husband as he walked past their old bedroom door, to 'be quiet so you
don't wake the children'.
Hallucination - seeing something when there are no cues for it in the outside world. It is an internally
produced visual image experienced with the eyes open. Sometimes people are aware that what is
being seen is not present in the outside world, and they can stop it at will. Others may not be aware it
is not real and cannot stop it at will. There are many different types of visual hallucinations.
Genuine visual hallucinations can result from urinary, chest or other type of infection, other illness, or a
reaction to medication (see Factsheet 520, Hallucinations in people with dementia). They have also
been more associated with Lewy body dementia, than other types of dementia. This should be
considered if other causes of visual difficulties or hallucinations have been eliminated or treated, and
visual hallucinations persist. (See Factsheet 403, What is dementia with Lewy bodies?)
5Interventions for visuoperceptual difficulties
The increased understanding of visual mistakes is generating new ideas for assisting people with
Careful attention to eye care and visual health
. Check that any glasses worn are clean and that the prescription is correct. (For more
advanced dementia, this may require use of special non-verbal tests as for people with
learning difficulties.)
. Arrange for regular eye checks.
. Encourage the person to wear glasses if they need them. Glasses will improve acuity
(sharpness) of what is being seen; however, glasses cannot correct difficulties resulting from
other types of damage to the visual system.
. If cataracts are the cause of, or contributing to, poor sight, talk to a GP about how to have
them treated.
Environmental adaptations
Aiding specific visual functions can help people with dementia (Jones et al, 2008). The first thing to do
is to improve lighting levels. It has been estimated that more than half of British homes do not have
enough lighting even for ordinary visual purposes (Whitfield Grundy, 1992). Improved lighting has
been found to be instrumental in preventing falls, and also in reducing visual hallucinations (Pankow et
al, 1996).
Deliberate use of colour cues can also help significantly. For example, one study with people with
advanced Alzheimer's disease showed that changing to highly visible red cups and plates led to a 25
per cent increase in food intake and an 84 per cent increase in liquid consumption (Dunne et al, 2004).
Brightly coloured toilet doors have also been used successfully in a variety of care settings to help
people with dementia find the toilet independently, and more readily.
High contrast toilet seats (compared to the colour of the toilet fixtures and walls) can make it easier to
locate them. If a person needs handrails choose extra-long ones so that they are as conspicuous as
possible (without the person having to turn their head to look for them).
Some tips for minimising visuoperceptual problems
. Provide good, even lighting (people resist going near dark areas in corridors and rooms).
. Try to eliminate shadows.
. Minimise busy patterns on walls and flooring.
. Use of non-shiny, light-coloured flooring will reflect light upwards and enhance overall ambient
light levels.
. Remove or replace mirrors and shiny surfaces if they are problematic.
. Highlight important object and visual cues (signposting/orientation points).
. Camouflage objects that you do not want to emphasise (eg light switches or doors that people
with dementia shouldn't use).
6. Minimise 'visual obstacles/barriers' such as changes in floor surfaces or patterns, to assist
independent walking.
. Choose activities to match the person's visual abilities.
For information about a wide range of dementia-related topics and details of Alzheimer's Society
services in your area visit
Useful organisation
Dementia and Sight Loss Interest Group
Alzheimer's Society, RNIB and the Thomas Pocklington Trust have created the Dementia and Sight
Loss Interest Group. The Interest Group considers connections between loss of vision and dementia,
including difficulty with visual perception that may be related to dementia and other eye conditions
such as cataracts.

Monday, 12 May 2014

Animals in dementia

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 came out.

When I was on my own at times I would lie of the couch downstairs so I could lie flat, and occasionally I would wake up to find him snuggled up along side me, then he would disappear as if he was embarrassed to be found there.

We wondered if it was to help me feel secure or whether he thought I needed support, or he was keeping me warm, something we will never know

He would do the same if I was extremely tired and went to lie on the bed for a rest, he would be there as soon as my eyes were closed.

When I had problems seeing things during the day like hallucinations, I knew it was just my brain because he could not see anything, so I felt safe. This helped me to cope in the early days.

Even if I was up during the night with my bad dreams and nightmares, he would get out of his bed and sit by my feet, until I went back to bed.

After the diagnosis it became apparent that something was wrong with him so we took him to the vets, where we were told that he was ill and they would need to do some tests.

 This was distressing for me as we had become so attached. We were then told that his liver had started to fail, and it would be better to put him out of his misery as he would have been struggling.

The odd thing was that after I had retired we had walked miles together and kept each other company, during the long days of the diagnosis, he was walking slower but always along side me.

After talking to the vet later she told me something which left me in tears, because it was so moving, and as she said was possibly very true.

That was that Ben had been ill for over two years but it had not been obvious to us, but once I had been diagnosed, he simply gave up the will to carry on.

In other words he knew I was ill and looked after me, until I was diagnosed and on medication, 

I had been in the medication for around 6 months and was starting to see things a bit clearer when he died.

I never got over this, as he had been a close companion for nearly a year during the diagnosis,  never letting me out of sight, unless my wife was around.

How can anyone say that animals are dumb and don't understand.

I cannot have another dog now because it would tear my apart now if anything happened.

Life would be different without our furry friends, bless them

Thursday, 8 May 2014

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 something would click into place, but no such luck. It's as if a virus has hit my computer and wiped it clean.
Trying to read the exam papers is like trying to read a foreign language, and nothing makes any sense at all.

Looking back I could and did spend hours working on electrical equipment, which as Mark has said was something I enjoyed doing, getting something to work all over again when it had died, yet these days, there is not a spark anywhere.

Having him around at times helps me to understand what I did at work, and in some respects it helps me fill in some of the holes, but not a lot. I often wonder why some people remember their jobs in great detail where others are at a loss to know where to start.

Mark often went into work with me at weekends when I was on call for breakdowns, and it was thus that made him interested in becoming an electrician rather than going to university, so in some respects he has picked up where I appear to have stopped.

I often look at my old diaries of the problems I faced at the start if this illness, trying to work out what was going wrong, and it feels like I am at times reading someone else's diaries, certainly nothing to do with me, yet it was me and I was going through the horrors of losing my memories and job all in one go.

Perhaps it's time to just let go and throw these things away, so I ca no longer be tempted to try and work these things out.

Saturday, 3 May 2014

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 control of your hobbies and major parts of life, but I would never tell anyone that I am suffering from dementia.

So please use your terms properly as you are upsetting those who have the illness, and some argue that these terms are prolonging the stigma. 

Friday, 2 May 2014

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.