Raising Awareness of Lewy Body Dementia

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 does so much to help those with this form of Dementia, within the UK

If you are unsure what the illness is, or need to know more about it, why not look at our new video about Lewy Body Dementia, which is on our website. This was filmed this year and it's now doing it's rounds on Social Media under Lewy Body Society. Org. UK 

    The more people Who Know, The Fewer People Who  Suffer

The Lewy Body Society
Hudson House
8 Albany Street
Edinburgh
EH1 3QB
Telephone 0131 473 2385
Email : info@lewybody.org
Press enquiries lewybodypress@gmail.com

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 others, and sue someone else, rather than using your own common sense, and this is quite frightening.

When I was younger you got on with life, watched what you were doing, and made sure you were safe, if you had an accident, then you held your hands up and admitted it was your own fault, and never blamed anyone else for our own stupidity, but these days it appears that it's everyone else's fault, and not our own, so what has gone wrong.

I firmly believe that it's health and safety to blame these days along with Insurance companies, because I think it has gone too far.

These days I have problems walking, because of co-ordindination, eyesight and balance issues, and the fact but I don't seem to be able to lift my feet as high as I used to, which for some reason means that I seem to catch my foot on the paving slabs, and this causes me to trip. But I don't blame the council etc, because I know it's my problem not anyone else's.

We had an occasion recently when we ask the council to check the footpath outside our property, because it was uneven. Someone came along one day, to look at the problem, and then asked if we were going to sue them. Wife's response was, that she was simply concerned that I may trip, on the uneven surface. We were then told, that to make it dangerous, any hole in a footpath would needed to be more than 25mm deep, before it could be repaired, or classed as a safety concern.

The odd thing was, that they came along the following day and dug up around 50mm, before resurfacing it again. So obviously, because my wife had asked kindly and had pointed out my problems, they had thought it out properly.

This left us wondering how many people are suing the council's, for uneven footpaths, because they don't watch where they are going these days.

 However, when it comes to people with neurological illnesses, like dementia etc, I think health and safety is a mine field, and I can't in all honesty see how anyone who does not have our illness, can tell us what to do, because they don't understand our reasoning.

I know from my own problems, that things change so fast, and when your coordination and thinking has gone astray, you become a liability at times, even in the house.

One moment everything is clear in my mind, and then the next moment, I am a liability, but that's my brain, and no one can tell me how to look after my own health and safety, because it simply does not work that way

A simple thing like turning round sharply, can end up with a fall, because my body turns, while the feet stay fixed to the floor

But we are living in this life, and must cope with the impossible at times, and no matter how many signs are put in place, you don't always recognise or see them

Over the last two years, I have been seen by a physiotherapist for my balance issues, but they simply cannot take on board that my brain simply switches off at times, and I do something totally unexpected, or silly without even thinking.

Its not deliberate, in fact as my wife will tell anyone, I get very annoyed with myself when I walk into something, or totally miss a step, but that's life

Furniture in our house has been placed so that I can grab it if needed, but sometimes, I either walk into it or miss it completely. I guess this is to do with judgement and co ordination issues, but its my brain and I have to accept it and live with it.  

That does not mean that we need someone leading us around 24 hours a day, we just need to be more aware of our surroundings, and that comes down to living in our own confirm zone.

I have been to many places in the past, including many new buildings which have been a liability, as far as health and safety are concerned, especially where people with neurological illnesses are involved.

One place in London recently, had different sized stairs, and that was very confusing and highly dangerous, especially if your brain and eyesight are not working as they should be. Yet this building was being used for a dementia meeting, and I was left staggered, by the fact that this was being used by a group who are supposed to be dementia friendly.

This leads me to think, a bit more time and thought should be spent on the needs of those with neurological illnesses etc, and less time spent on complete idiots, who are just out to find an excuse to sue someone.

No wonder insurance costs are going up, when we consider this sue culture.

Perhaps they should live in our shoes for be day or so, then they might start to think what they are doing rather than blaming others 

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 were published December 15 in The Lancet Neurology.

"Dementia with Lewy bodies accounts for 10%-15% of dementia cases, yet our understanding of it lags beyond the more well-known Alzheimer's disease, partly because it's commonly misdiagnosed,” said the study's lead author, Dr Jose Bras, UCL Institute of Neurology and Alzheimer's Society senior research fellow, in a statement. “Our findings clarify the disease's distinctive genetic signature, which should, in the future, help improve clinical trials, and lead to more targeted treatments."

Researchers genotyped 1743 patients with dementia with Lewy bodies (DLB)—including both clinical samples and 1324 pathological samples assessed post-mortem—and 4454 controls. They found that:

• Two of the genetic loci that were found to be significantly associated with DLB, APOE and GBA, bore the same associations to DLB as they do to AD and PD, respectively.
• Another one of the loci identified, SNCA, is also associated with PD, but differently: the researchers found that a different part of the gene is linked to DLB.
• There was preliminary evidence for a gene locus that had not been previously associated with DLB, but the results did not reach significance.
• A few loci that are associated with AD and PD do not appear to be associated with DLB.

For the first time, researchers were able to identify a heritability estimate of DLB, 36%, which is similar to that of PD. The heritability was particularly high for 4 specific chromosomes, suggesting that further research could focus on those chromosomes to identify novel loci.

"As the gene loci that had previously been associated with DLB were also implicated in Alzheimer's and Parkinson's, it was unclear if DLB's genetic roots were simply a combination of the other two diseases. We've confirmed that instead, it has its own unique genetic profile," explained the study's first author, Dr Rita Guerreiro, UCL Institute of Neurology and Alzheimer's Society senior research fellow.

"The selection of study participants has been a substantial challenge in dementia trials. Our findings can be used to identify more clearly which type of dementia each person has, so that they can take part in the right clinical trial, which could lead to better treatments and diagnostic tools," she said.

"Despite DLB being one of the most common forms of dementia in older people, until now there simply hasn't been enough information on its causes, so the finding that up to 36% of cases might be genetically inherited is a real revelation,” said Dr Doug Brown, research director at the Alzheimer's Society, which funded the study. The Lewy Body Society also provided funding.

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 what to believe.

Some people use social media to keep up to date with certain illnesses, but like Lewy Body Dementia, there are no UK based groups,  as most are American, and their health and social care systems are different

After my 2nd diagnosis in County Durham, my new consultant told us about the illness, " Lewy Body Dementia ", along with the medication, and then told told us to go to the nearest Alzheimer's Society branch, where we could get extra support and advice needed to carry on with life.

The consultant also gave me this piece of advice, (You either Use it, or Lose it), meaning that by remaining active, it helps to keep the brain active.

I was also told to write my life story, as a way of remaining active.

It was recommended that I started at the diagnosis, and then worked back over, as and when memories came back, now this practice is widespread.

However as with all things, a diagnosis of dementia is a postcode lottery, and not everyone has the benefit of a good consultant, coupled with good support services.

I do feel that services are being stretched these days due to financial cuts, are too many local authorities and charities are not providing the services for people with dementia, like the services we used to see.

Many simply run a service which is broad based, thinking that one topic covers everyone, but no matter what you do, you can never help people to remain active by using this method, because we all expect different things.

Some people like singing while others don't like to sing. Some people like Dementia Cafes while others don't, because they find them to be overwhelming.

Coupled with this, there are so many variations of dementia, and people with one type of dementia, may feel more at home in a different group.

Like people with Lewy Body Dementia sometimes attend a Parkinson's Group, because the illnesses are similar, and they run different services

As I said, we are all so very different, and want to do different things with our time

A common myth in dementia, is that if you've seen one person with this, you then you know and understand everything there is to know about it, but just how long can this be, because we are all individuals with different problems and symptoms

Having said that, I found that the Church of England did little in our area to help people with dementia, and this was very hard for me to accept, having attended church on a regular basis all of my life.

It was as if those with dementia were a hindrance, something I find disgusting and hard to accept.

I think that we must encourage people to do everything they can to remain active, whether that means joining groups, where you can discuss your problems with others in the same position, of finding other activities which help you to remain active

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 we are lucky in as much as we still have a branch at the moment, because many local branches have been replaced by a mobile bank.

I don't like this at all, because I get very nervous using machines in the first place, but won't use external machines, which are next to a busy bus stop, where other people can watch what you are doing .

I do wonder how many of these new staff really understand that many people with neurological illnesses,  and the elderly etc,  don't cope with technology in first place.

It seems to me that they would be better using the extra tills,  rather than having extra staff on the floor, pushing people towards self service machines

Before this all happened, most of the staff were caring and understanding, now I really wonder

It worries me that many other companies are claiming to be Dementia Friendly, and are doing the courses for the wrong reasons, or are doing the courses but not  actually following through and doing something positive for thise living with dementia

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 not given a lot of hope early on, she chose to fight on regardless, and has written books about her experience.

The diagnosis usually comes as a great shock to many, simply because it's something that no one wants, yet many find new ways to keep themselves occupied.

I met one gentleman back in 2005, who had vascular dementia, yet he is still going strong.

I understand that it all depends on when you were diagnosed as far as the illness is concerned, but if you are young enough, the world is your oyster

As one consultant in Newcastle once said, You either "Use Your Brain or Lose it".

In other words fight on and don't look back, or give in.

If we want to fight dementia and memory problems, we must remain active, as my old consultant once told me

This means staying as active as possible, by using what ever method you can.

Some use crossword puzzles, some use other board games, while others use other activities such as photography, walking or meeting at day groups.

I don't attend day groups as I have always been active,  and tried to keep myself amused in photography or walking when ever I can, although I have problems walking at times at times

However I really enjoy walking round the riverside watching the ducks and swans etc, and get a lot of pleasure sitting watching them when it's quiet. 

I also enjoy my time at our static caravan in Barnard Castle, where everyone knows me, and I can enjoy myself

There used to be a discussion group in our area run by the Alzheimer's society, but this is no longer running, but it was a wonderful way to keep in touch with others. 

This group used to be lively, because we all had one or other form of dementia, and we understood everyone else's problems and accepted them.

I accept that others may not wish to meet up and talk to others, but I do feel, that once you understand that you are not on your own, life takes on a different meaning.

Many feel isolated and unable to discuss their problems with others, because of the stigma which is attached to this illness

But I always said that I would be happy to talk to others in our area in the hope of helping them to cope and move on.

This is why I spend time giving presentations to graduate nurses at Northumbria University, in the hope that I can inspire others to grasp the nettle and do something positive for others
 
But I do suggest people join groups in they are available in your area, if not join a dementia charity and see what support they have in your area

I think it's good to mix with others on the same journey if the resources are there, but there seems to be nothing here apart from singing for the brain, and as I no longer enjoy singing this one is out. 

Many people like painting and other forms of art.

So go on express yourself.

There are no art groups in our area, but I am hoping to start to learn to paint very soon

So if anyone gets a diagnosis of dementia, do not sit and let it get to you.

Enjoy your hobbies, enjoy mixing with others, and what is more remember that you are not alone in having this illness, you are among friends.

Many people give up fighting after being given a diagnosis of dementia,  while others prefer to fight on regardless

We are all so very different and react in different

Never give up, and try to talk to others who understand  

      

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 finally realised that animals understand more about us than we thought perhaps 10 years ago.

It’s amazing just how far dogs have gone in supporting people who are ill these days. The way they can detect cancer, or the way an animal can detect that a person is going to have a fit, is inspiring.

I wonder how many people would have thought of this in the past

Looking back 

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, as he 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 outside the door when I came out.

 When I was on my own at times, I would lie of the couch downstairs, where I could lie flat, and occasionally I would wake up to find him snuggled up alongside 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.

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.

I was told 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 when he died.  I never got over this, as he had been a close companion for nearly 18 months while I was going through the diagnosis, never letting me out of sight, unless my wife was around.

This broke my heart, because he was not just a dog, he was a big friend, too me 

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 alongside me.

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

I confess that I really miss not having an animal in the house, because they can support us in many ways these days.

Not only that, but having a dog means that you must go out and take it for a walk, which also means that you yourself get exercise

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

But I understand, that when you have a cat or dog, , they ask for nothing, but give you 100% unconditional affection and attention in return for a home and food.

Life would be different without our furry friends, bless them