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Showing posts from August, 2013

Comments about the blog

Since setting up this blog I have found many hundreds of comments about it, many of which are very interesting.



I confess that I started this as a way of having an on line diary not expecting anyone else to read it let alone comment on it.



But its now read in 101 countries by over 14.050 readers, something I find truly amazing, and its used in Universities for teaching students about Lewy Body Dementia.



I had no help with setting this up, but just got on with it not expecting these results.



It is not easy to set up the blog as I had no experience, and to be totally honest I don't think I could do it again now without support, but I think it was well worth doing in the end



Its totally free to use, which is a bonus to me, and I don't use advertising, although I talk about charities etc at times.



I sometimes use news stories which seem interesting to me, as I am sure that others around the world would find them helpful too, as we never learn enough about this illness, or how we …

Lewy body dementia and eyesight

A few months ago, or so its seems I wrote about having problems with my eyesight, and how people think it is all connected to the Lewy Body Dementia.



Having been put through a lot of tests over the last few months, I was beginning to wonder what was happening as I have periods of Double vision, which can be annoying when trying to watch television or read.


After being through tests done by Dendron the Dementia and Neurological Research  Unit, I was sent for more tests after they decided that more needed doing, as they thought it was interesting.



Then the Eye consultant told me to blank one eye out with a handkerchief, behind my glasses. This is fine but it means everyone looks at you, perhaps thinking that my wife has given me a black eye, I say that in jest, as I gave her one during a very bad night  when I was having one of my nightmares, caused again by this weird illness.



But I opted to walk around or watch television with one eye shut, and I am getting used to doing it now when …

Strange things which happen

The other day I went for a walk to the supermarket with my wife, daughter and Grandchildren and as I was tired when we arrived, and the children had gone on their bikes and scooters, I decided to sit out side in the sun and wait for them to come out again.



While I was there I remember looking at a large bicycle which was in a stand directly in front of me, about 12 feet away from where I was sat, so obvious that I could not miss it.



I was looking at this and watching the shop door for around 5 minuets, but was shocked when I looked at the bicycle again to find that it had gone? But where, I know it had been there and never saw anyone move to remove it.



Was this my mind? I simply don't know, but I am convinced it was there as I had seen it two days prior to this



I was totally shocked by this and started to doubt myself, even tough I am convinced in my own mind that it was there in the first place. is this my Lewy Body Dementia playing up again

Dementia and places if worship

I have heard many comments about priests and dementia some of which makes me very angry





One was once heard to say that its a waste of time doing services in care homes etc, as those with the illness don't know the tunes or the words, and just sit there looking into the garden.





I did wonder whether he was boring those poor people to death, but I was left a little shocked and annoyed when I heard these words, as I could not believe my ears.





What sort of clergyman goes to a care home etc to take a service and comes out with pathetic comments like this.





Do they really not understand that many people with memory problems got into religion at an early age in life, and therefore, these things are built into their memories.





To us its a ritual and a major part of our life, and not one we want changing just for the sake of doing it.



They like the old hymns and forms of service without long winded sermons, yet these people cannot get this into their heads that we like our services to be …

Move to give recognition to dementia-friendly churches

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After reading this in the news today, I realised that some churches are doing something positive, and after all the time I have tried to get things changed, I now realise that I am not alone. Since my diagnosis I have struggled to come to terms with church services which change every week, and sometimes use umpteen variations of the Lords Prayer, and that leaves me feeling totally left out. When I was first diagnosed with Lewy Body Dementia in Oxford, I could not remember the Lords Prayer and that was distressing, as it was something I grew up with. Then  many months later after having to move home from Oxford back to the North East and had been given the dementia medication, I managed to pick it up again, only to get a shock when we moved back to my old Church in the North East where they seem to use different forms of this at every service. Things got so bad that I have now stopped going, because the clergy only think of the youngsters and not the older people who are regular atte…

Much better today

I am feeling much better today, even though the builders are making a noise next door, and have been since 8am this morning.



I went to bed feeling shattered at 10pm and then woke up at 1-04am, after which I was just knapping, while listening to relaxing music, so I suppose I did get some rest.



Not sure what today will bring as my wife thinks we should go out to get away from the noise as much as possible, so its a case of wait and see.



Lets hope its a better day all round.

Not a good day

This morning was terrible, and I was struggling with the noise at home, then next doors builders started, and I just gave up altogether.



When my hearing is acute as it was today, life is unbearable and there is nothing anyone can do.
It feels like I have a huge hangover even though I know that I have not had a single drop of alcohol.



We had to go out and just walk for a while, and after lunch I had a short sleep which helped slightly.


I know that part of my problems is caused by the lack of sleep at night so its a vicious circle really.

But this afternoon my wife had a bag of crisps, so I left the room and sat upstairs, as that sound on a bad day is unbearable.



Lets hope to night will be better, and I manage to get some sleep without a break for a change.



We are supposed to be going to my daughters inn Farnborough this weekend, but if this carries on I am not going to be very good company

Nice Day Out

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Today my wife had to go out to Raby to deliver some Mothers Union parcels, and as there was a vintage vehicle show on near by on the Raby Castle grounds we decided to stay and look around.



It was really marvellous seeing all of the old vehicles many of which I remembered from my childhood and some form my teenage and early twenties.



It really made my day.



There were also a lot of trade stands which sold engine parts etc. something that used to keep me occupied once up on a time, now these pates mean nothing at all to me, as I no longer understand engines at all.


 But once many years ago engines could be stripped and rebuilt by anyone, without the need to go to a garage. Now you need a computer. Since this horrible illness got me machines like this don't make a lot of sense anymore and that is distressing, as my car was my pride and joy, something to be worked on each weekend.



Now its me that is worked on by others



Austin 7                                                         …

Are Dementia figures dropping?

I have seen reports saying that the numbers of people being diagnosed with dementia are dropping and I am starting to wonder whether the figures are accurate, or if this is to take the pressure off the dementia charities etc.





I simply don't understand these figures and wondered if it was just government spin doctors at work again.





However one thing that does alarm me is the fact the National Health Service is in a total mess and running out of money due to overuse.





Is this due to things like the rise in teenage drinking, where many need hospital treatment.



There has always been a problem with teenage drinking but now its getting out of hand, and this alone can bring the health service down if we are not careful.





Years ago if you got drunk, you were put in a police cell overnight, and either given a warning  or were charged with being a public nuisance, now they send them to hospital in an ambulance, which must cost the state quite a lot of money each weekend.





Not only that but I…

National Dementia Action Alliance

As someone who has Lewy Body Dementia, I was a little sceptical at first about the National Dementia Action Alliance, as I could not see what good it could do, but now I can see a dramatic change in the way society in general looks at this illness.

I can say now that I am honoured to be part of this group which is making a real difference
A lot of charities and national bodies have joined up to make a real difference to the way dementia is portrayed, as now things are starting to look much healthier than many expected.

Many like myself thought that this would end up as a glorified talking shop, with people being involved, just for the sake of it, but my fears have been allayed and we have been proved wrong.
I think the main reason for this is that many people still feel that dementia is still classed as an old age illness, as is therefore not worth bothering with.
But in actual fact there are over 16-000 younger people in the UK alone, with this illness and this number is growing fast. T…

Neglect a patient and go to prison: Dramatic warning to NHS staff in major review

NHS staff and organisation’s that ‘wilfully’ or ‘recklessly’ harm patients should face new criminal penalties, a major review said yesterday.
It also demanded legal sanctions against leaders in the NHS with a ‘couldn't care less’ attitude or who deliberately withhold information.
The review headed by Professor Don Berwick, a world expert in patient safety, said there have been repeated safety defects in the NHS with too many patients and carers suffering as a result.


It called for a culture of transparency that puts patient safety above targets, especially financial goals.
Continually improving patient safety should ‘permeate every action and level in the NHS’, said the review commissioned by the Government in the wake of the public inquiry into the Mid Staffordshire scandal where hundreds of patients were routinely neglected and died. Managers chasing financial targets were partly blamed.
The Berwick report set out measures including a review of staffing ratios to ensure that sufficie…

Holiday on the Northumberland coast

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We have just returned from a wonderful and relaxing holiday at my Brothers Caravan which is sited on a private site on the Northumbrian Coast just North of Bamburgh Castle. I found this to be the most relaxing holiday I have had for some time, just sitting watching the sea, and the wildlife. Watching the sky and the Sea changing colours as the hours went by. I could not believe just how relaxing it could be just watching and listening to the sea. While we were there we went out to the Farne Islands by boat and had a wonderful time looking at the large colonies of birds and seals  Birds on the Farne Islands Chick waiting to be fed Mother waiting to feed her Chick Birds on Outer Farne Sunset from the caravan Bamburgh Castle just round the head land. This famous castle has been used in many large screen historical films. Mystical Island of Lindisfarne and Lindisfarne Castle., which can only be visited at low tide when the causeway is visible. 


                                     Mothers…