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Raising Awareness of Lewy Body Dementia

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Are you considering a charity fundraising event in the future, or considering doing something positive as a New Years Resolution, if so  why not consider supporting the Lewy Body Society.

Charity events run through out the year, and range from small family events, to large local or national events, so please think of this wonderful charity if you want to do a charity run etc.

As an Ambassador with the Lewy Body Society, I would like to encourage people to support us in any way they can
This is a small charity which is totally dedicated to those living with, or  caring for someone with  Lewy Body Dementia in the United Kingdom 
We need all of the support we can get, so we can promote the charity, in the hope that we can get a higher profile for Lewy Body Dementia, and also for those living with this form of Dementia and their carers,  within the UK. 
So if you are considering doing a sponsored event for a wonderful caring charity, please come and support this wonderful charity, which …

Health and Safety Gone Mad

I do wonder if health and safety has gone too far these days.

When I was working, as an Engineer, I was staggered by the fact that we had to have signs next to taps, telling people that they could contain hot water, and signs by the river side, warning us of deep water.
As children we grew up long side rivers, Electricity and hot water, but got on with life, we never needed some over paid office worker to tell us the obvious.  I would have thought it obvious that electricity could give you a shock or kill you, so why do we need signs next to sockets, or outside electrical substations etc, warning of electrocution, or danger of shock.
I now wonder what has happened to this state, because people are no longer able to think for themselves, and we often hear of people complaining these days, of the nanny State, but is it clear that these same people are not taking responsibility into their own hands.
We have gone from an intelligent and caring nation, to one where it's easier to blame …

Genetic Profile Unique to Lewy Body Dementia

This is wonderful news for all with an interest in this illness

Researchers Discover Genetic Profile Unique to Dementia With Lewy Bodies
Allison Inserro
In a discovery that could potentially pave the way for more targeted treatments, researchers announced that dementia with Lewy bodies (DLB) has a unique genetic profile, separate from those of Alzheimer disease or Parkinson disease (PD). Researchers also found that DLB has heritability traits similar to PD.
In a discovery that could potentially pave the way for more targeted treatments, researchers announced that dementia with Lewy bodies (DLB) has a unique genetic profile, separate from those of Alzheimer disease (AD) or Parkinson disease (PD).

It is the first large-scale genetic study of this common type of dementia. Researchers also found that DLB has heritability traits similar to PD.

The genome-wide association study was conducted by a collaboration led by University College London (UCL), with 65 academics in 11 countries. Results w…

Diagnosis of Dementia

Diagnosis of dementia like many other illnesses, can be a very traumatic experience, for anyone to cope with, and if there is no support afterwards, life can become very difficult, and that is why I am so pleased the things have moved on. Many people find, that after the diagnosis they are left to fend for themselves, and must fight for support, not just at the consultation, but also in their community, and that is very wrong in this modern society. So much depends on the consultant, and how much information they discuss with you, because many people are given their diagnosis, and are then left to find her own way, including finding out more about illness and how to cope with it. Its usually well after seeing the consultant that the questions arise, by which time it's too late to get help. This leads to more problems, if you go onto the internet, you are told different things on different websites, many of which are not kept up to date, and you are then left wondering who or wh…

Dementia Friendly Banks?

Over the last few years, a lot of work has been done in Banks to make them Dementia Friendly, but I do wonder if they have now had second thoughts My wife and I went round lots of North East Branch's of Lloyds Bank doing Dementia Friends training, and we were very proud of their work. Now things have changed, but not for the best These days the staff in our local branch,  insist on pushing people to use the machines, rather than speaking to a person at the till. I confess that I hardly use these machines, unless my wife is there for support, because they confuse me. I know that I am not alone with this,  because other people have spoken out about it. It seems that Lloyds are cutting costs by reducing the numbers of staff at the cash tills,  are expecting everyone to use these machines.
However when you see the people queuing up,  it's obvious that many don't feel comfortable using these machines. In our branch, most of the staff and managers have been changed, but w…

Use it or Lose it

From a blog in 2005 which was updated last year but never used
As more and more people are being diagnosed with dementia these days,  I thought it would help to bring back another old blog.
When my diagnosis was completed in 2005,  I met many people who are now old friends, many of which are still fighting on.
These people were I guess very lucky like me, but I guess one thing separates them from others, is the fact that like me they chose to look at life in a different way after the diagnosis,  and get as much as possible out of life from then on.
We are all different, with individual symptoms and problems, and no two people are the same,  something that many people don't understand, but then there are many types of dementia
We only need to look at Christine Bryden in New Zealand,  who was diagnosed over 20 years ago, and is still doing presentations at conferences all round the world.
This lovely lady has seen scans to prove that her brain has shrunk, and although she was …

Animals and dementia

I looked at this topic in 2009, but I do think that its important these days too


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.
For years we have seen Guide Dogs on our streets, supporting those with eyesight problems, and now we are hearing more about the power of animals in the lives of those who have a long-term illness etc 
I heard the story of one dog, who was able to detect when it's owner was going into an epileptic fit, and would get between the owner’s head and the ground, to prevent injury to its owner. 
These days we hear about Dementia support dogs etc, who are trained to support those living with this illness, in the same way as support dogs assist those living with eyesight problems
There are also dogs which support those with chest problems, and  I personally find this to be amazing, but I think it’s because people have now final…

Technolgy and dementia

First written 2014 and amended November 2017


Technology is a lovely thing, if you can use it and understand it these days
Children are growing up with various forms of technology these days, and although they will adapt to newer forms of technology in the future, but I do wonder if they will be able to function without it, when things go wrong
When we go into supermarkets these days, we see modern technology at the checkouts, but if there is a power failure, the store must close, because no one can add up without the technology any more.
When I was young, the store staff added up your bill, usually on the piece of paper where it could be seen and checked, but those days have long gone
However, these days many elderly people have never come across some of this technology, and in many cases, they may not want to use it.
I confess that I don't cope with the self-service checkouts very well, and tend to join the big queues waiting to be served by real staff, rather than a machine
There…

Information pack for diagnosis of dementia

The other day I found this old 2006 blog about the information pack we were given, after my diagnosis of Lewy Body Dementia in County Durham, in 2005 
It was done as a way of helping newly diagnosed people negotiate the system. Information pack for those newly diagnosed as having Dementia
This pack was produced by our local branch of the Alzheimer's Society, with help of our local County Durham Dementia hospital.
The pack contents were: - Information about Lewy Body Dementia, including symptoms and complications etc. Information about the medication I was being put on
Information about the local groups within our local Alzheimer’s Society branch, including Carers Support, Dementia Cafes, and Discussion Groups for those living with dementia etc. Phone numbers of our local branch staff
Direct phone number of my hospital consultant, for emergency.
Phone numbers of the Dementia Hospital staff, including an emergency 24-hour number, which got the carer direct to an on-call doctor or nurse at…

What would you do to stop Alzheimers

The other day some one asked this question on social media 
If you thought you were going to get an illness like  Alzheimer's disease, or Dementia  what would you do, or would you want to know what was coming.
I guess many like myself would be utterly terrified of the thought of getting one of these illnesses, but in all honesty, there really is nothing we can do to stop it.



I thought my life was coming to an end, when I was given the diagnosis of early onset Lewy body dementia, but my wife and daughter had other ideas, and without their support I would surely have given in altogether

This was before my second diagnosis  after we had moved  home, after losing my job. 
It was then we found out that my original notes had been lost by the first hospital
So I had to be diagnosed all over again, but after this diagnosis was confirmed again, I got more support and help than the original hospital had given me
I was told there and then to "REMAIN ACTIVE " and not to think of w…

Dementia and hobbies

Many people give everything up after a diagnosis of dementia, and simply give up the will to fight on.

 But others keep going with the it hobbies for as long as they can, while some even learn to do other hobbies, or even learn a different language, which is good.
Over the years many of my hobbies have been given up, either because I forgot how to do them, or they became too dangerous to do any more.
As far as art is concerned I don't seem to be able to draw properly anymore, which is upsetting.
When I was an engineer I could go and look at a job of work, then I would sketch it out, and measure it up, knowing that I could work from the sketches etc.  These days it's all gone and trying to sketch things is very hit and miss.
However, I do still fight to hang on to using my computer and my camera, and although I can't always remember the settings, I am still determined to hang in a long as I can
Other people have other hobbies, which vary quite a lot.
I know someone who now carves…

Balancing Act

Like many people, I find that life gets difficult, when you have more than one illness to think about, and this can cause extra problems with medication
Recently I was told that medication which supports us for one illness, can have the wrong effect on another illness which we may have
So in more than one way, medication can be a fine balancing act
I was diagnosed was having a form of Lewy Body Dementia,  something which never made any sense at the time, but I knew there was something wrong, because I was losing control over my job.
At first the doctors had thought it was something to do with  Encephalitis or something like that, because I had been very ill with pneumonia, but then the diagnosis of Lewy Body Dementia came out.
But at the same time I was struggling to cope while working, due to tremors and memory problems, which was hazardous, as I was trained to work on electrical installations  etc, and not the type of work which is easy when a tremor starts
I also had what was…

Derby Dementia Group

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Today I was sent a link to an Independent  Dementia Group In Derby, called the Hardy Group. 
This sounds a really nice group, for people living with Dementia, because it inspires them to remain active, after their diagnosis, when its far too easy to sit back and do nothing. To me this is everything a Dementia group should be, encouraging people to remain active, and I feel proud and honoured  to know both Dave and Heather Roberts, who put so much time and effort, into running this wonderful group However, like everything else these days,  it costs a lot of money to keep these groups going, but I am hoping that we can encourage people in this country to step up and help with the running costs, to a brilliant worthwhile charity.
Far too much money goes into these Larger Dementia charities, who don't provide the real services which are needed these days, so its left to the independent groups, like The Hardy Group to step up and provide these services
The Hardy Group is a small charity …

Fireworks

Many people enjoy fireworks,  and when I was younger I enjoyed them.
These days I struggle and get startled very easy, but I guess it's because these things are much louder than they were before, and my brain does not cope with noise the way it used to do.
Recently I wondered how military people coped with these very loud landmines as I believe they are called..
These things seem to shake the house when they go off, and I confess they terrify me at times.
To today I heard that the Chelsea Pensioners were writing to groups running firework displays, asking them to think about people with post traumatic stress, from military action.
While I don't think many people will take any notice, I confess that I cannot really  understand what these people may be going through when they came home injured from war. 
But they must be so mentally scarred, that these noises bring back many unwanted nightmares of war zones.
Trying to  live with the nightmares and horrors of what went on, a…

Inappropriate touching

I hope I got this title spelt correctly, because I struggle with my spelling  these days,  and don't always see obvious mistakes
But over the last week or so we have heard lots about inappropriate touching in the news, as far as parliament is concerned
But this is something that has always worried me since my diagnosis, because when you are living with Lewy Body, or and other form of Dementia, you don't always think of the obvious.
I confess that there are times when you don't think correctly,  and some people don't make allowances for your illness.
What used to be classed as normal years ago has now changed, and in some cases it's become a minefield to deal with.
I was always nervous when it came to the opposite sex, but after seeing the news recently I have started to wonder where this will all end up
I guess those in the news have had little regard towards the opposite sex, and that's been their problem
But I never know how to deal with people these days…