Friday, 22 December 2017

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

Sunday, 17 December 2017

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.


Friday, 15 December 2017

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

Tuesday, 12 December 2017

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

Monday, 11 December 2017

Processing Information in Dementia

Processing information and dementia Life can be very difficult at times when you were trying to process or understand what is happening around you.

I stopped going to meetings etc, because it took so long to understand and process, what was being said.

By the time I understood what had been said, it was too late to answer.

The same thing happens when I'm outside and I meet friends, or colleagues, and sometimes misunderstand  what they have said.

This can be embarrassing, or can cause problems, because they may think that I am being rude .

Many friends and colleagues accept that I have an illness, and take me as I am, and if I make a mistake, they don't take offence, but not everyone is as understanding these days, and far too many, take it the wrong way without thinking or taking onboard my problems.

This is not intended, it's just a fact of life these days, and although upsetting, I have to accept it and move, on hoping that they understood my problem.

However it's not just the spoken word, it also happens with technology, my brain does not cope easily with modern technology.

Many people expect me to cope with games and gadgets on things like Facebook etc, when in fact, I simply don't understand them, and this is frustrating, not just for me, but I guess for others too.

This is also one reason why I don't play board games these days, because I need more time to process things, and people get annoyed and frustrated which does not help me, or them

This is i gather all down to my slow processing due to problems in my brain, although upsetting at times, I have to accept it, hoping that others will allow me time to process the information and answer in my own time.

In this fast moving world, people don't always allow us time to take on board what has been said, or what is happening, and then start to answer themselves, which in many ways is rude and patronising.

There are times when I struggle when I'm shopping, because I need to take on board what is happening around me, and that's not always easy, because people move so fast in all directions and speeds.

This in turn leads to balance problems, because I tend to feel unsteady, or lose my balance if someone walks in front of me, and that can make people assume I am drunk, when it's all down to balance processing the information in front of me.

There are times when this causes problems when I'm at the doctors, because I need to take on board what has been said by the doctor before I answer, but this is why my wife always comes with me, so she can answer questions I may get stuck with,

My wife has said that it may look as if I don't want to answer the questions  myself, when in fact it's all down to my processing speed, or lack of it.

In fact being at the doctors can be very distressing these days, because I have to remember why i am there, and anything that's gone wrong, which is not always easy, especially when it comes to explaining them properly and clearly

Another problem these days, is the fact that I can't answer a simple question straight away, and need time to consider what has been said before I answer.

I know this causes problems at home, and my wife must get very agitated with my lack of response. Simple questions can cause problems at times, and it must upset my wife along with other people
There simply isn't anything I can do about it, I just have to think things through carefully and then answer.

I have been caught out many times, when someone has asked me a question, and I've answered wrongly, simply because I picked the question up the wrong way, I thought it meant something else.

Usually if my wife is there, she will support and correct me, and that in some way does help out, although it's upsetting to know that I've made possibly a bad mistake.

It also annoys me to understand that I occasionally need someone to correct or support me.

Things which used to be simple while I was working, like reading letters and emails, now cause problems, and I usually let my wife read them, before I go anywhere near to answering them, because I sometimes misunderstand what they are about, or what they are asking.

However loud music can also cause extra problems these days due him the fact that I seem to have acute hearing problems.

Shopping is a complete hazard these days, due to the fact that most shops seem to have loud music blasting out all of the time.

It's things like this which make me feel that I am starting to lose control of my life.

Tuesday, 5 December 2017

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  
      

Friday, 1 December 2017

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

Monday, 27 November 2017

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
 

Friday, 24 November 2017

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 are so many possibilities for using technology to keep you occupied or active, but I do worry that soon, it’s going to get beyond the control of many elderly people, or those with a neurological illness.

I suppose the day will come when doctors’ appointments could be done via Skype or telephone or even email, rather than face to face, and this will cause problems to those who don't cope with technology very well

These days we are told to order our prescriptions, and arrange appointments over the internet, however I get confused doing this, and my wife does not like it, so we do it the old way by going to the doctor’s surgery.

Many elderly people and those with living with dementia etc, are using technology at home to keep themselves active, in the hope of staving off the illness for a little but longer.

It does worry me that technology is now being overused in many places, making it difficult for elderly people and those with neurological illnesses to keep up with constant changes.

Looking constructively at technology, it's used so widely these days, that many people don't always accept its use.  Years ago, there were many complaints about the use of technology to track people with dementia.

But in all honestly, everyone who uses a mobile phone is tracked by a satellite, so if you can use a mobile phone and be tracked, why is it so wrong to use it to track people with dementia, because at the end of the day, it’s for our safety, and is giving us the freedom to do whatever we want, without needing full time carers with us.

This gives us the freedom to do what we want, when we want, so we can live an active life without social workers etc, or anyone else telling us what we can and can't do.

But technology is far reaching these days, and some people would be totally lost without it.

I use technology most days, whether it's my mobile phone, tablet computer, or whether it's things like, the voice activated software on my computer, which is a great help on my bad days, when it's difficult to use a computer key board. 

This is a godsend, but it has its down side, because there are days when it fails to recognise my voice, so I must spend time going over the course again teaching the equipment to understand what I am saying.

This is often seen as part of Parkinson's disease which is like Lewy Body Dementia. The tone of our voice changes on a regular basis

What does annoy me, and I don't suppose I am alone, is the fact that companies keep changing their websites, and this in turn makes life so much harder for those of us, whose brain is doing its own thing.


















Tuesday, 21 November 2017

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 the hospital.

List of local services within our town, including social services etc.

List of activities to help us to remain active 

Sadly, as this was a local pack, it had to be stopped because the Alzheimer's Society Central Office, objected, and said it could not be used as it was not a national project.
 What a pity they did not think of getting it rolled out around the country, because it was so useful to everyone being diagnosed at that time.

One thing that would have been very useful at the time, was a wallet sized card stating, that I had Lewy Body Dementia, and contact details of my doctor and family, along with my medication etc.
One of these, "I have Dementia" cards was later produced by the Alzheimer's Society’s” Living with Dementia Working Group"
 This was such a handy pack to be given after your diagnosis, because the support services were there at the time, and we knew where to go for help.

I found this to be a brilliant idea, as did many carers and people with dementia

















Monday, 20 November 2017

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 what was around the corner, and it helped me.

But my daughter was a biologist and had read about this problem at University, and she kept me going

I was then given this advice by the consultant. 

If a hobby or job you have done for years, and you find that it can not be done on one day, leave it and try it on another day

If it fails on the second day, leave it and try on a third day 

If it fails on the third day, leave well alone, and go on to try something new, otherwise you will end up being stressed and depressed, at losing the ability to do something

This will have a knock on effect on your family and friends

This was good advice and helped me to move on. 

Sadly this consultant left, to spend her time climbing the Himalayan mountains. I guess it was more relaxing than working for the NHS

But this lady was a real professional who wanted to help her patients


I do think people need more support after a diagnosis of dementia or Alzheimer's, because there is little or no  support  these days, it's still a post code lottery

It's my own opinion that there should be dedicated dementia nurses, at the diagnosis, who can then go on to support a person and guide them through their problems. 

There also needs to be more support for our carers, because they have to start from scratch, without any help from social services

What is more, they are saving the country hundreds of millions of pounds a year, with little thanks from the Government. 

A carers role is 24 hours a day, 7 days a week, trying to protect us from coming to harm, and in many cases, without rest themselves.  

Along with this we should be getting more information about our illness at the diagnosis, as I did. 

This allows us the time to take the diagnosis on board in our own time.

This information should also be kept up to date, because there are too many websites these days, which are out of date, and much of the information differs from other websites.


While the news media are full of ideas these days, on how to stop us getting these illnesses, I do wonder where they get these ideas from, or whether its just a way of grabbing headlines and selling their rubbish newspapers 

At the end of the day, if the specialists really knew what was causing these illnesses, or how to stop them, they would be highlighting this themselves

A few years ago, I was discussing Lewy Body dementia with a friend of mine, who has since died. 

We had both had Lewy Body Dementia, and had both worked on live electrical installations over the years, and we wondered if that was the cause, because its not exactly healthy working on live high voltage cables. 

There had been a lot of speculation in the media about high voltage cables and  other illnesses like leukaemia.

But I am sure if there had been anything in this, we would have known by then,

 However If you are going to get one of these illnesses there isn't much you can do to stop it, but by remaining active, it has been proved you can keep going for a lot longer

As one Professor in Neurology in the Northeast once said, we either "Use our Brain or Lose it". 

I have always remember that and it helps me to fight on, and I have no intention of giving in and stopping yet, because life is to short

However I do feel that's it's very important to get as much as you can out of life, and not think about what you have lost or are missing. 
It's about our pets, Families, and Grandchildren etc, and if you focus on them it takes your mind off your own problems

I know that it's not a bed of roses living with dementia, but with help and support from others, you have to make the most of a bad situation. 

I am only too glad that I have voice activated software and spell check on my computer, and this allows me to carry on writing my blog.

I am sure that I would have given in by now, if it were not for these two tools, because I can say the words but have little idea how to spell most if them these days. 


Saturday, 18 November 2017

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 walking sticks as a hobby, and that is amazing to hear about.

 I used to love wood carving, but these days, with lack of coordination, I am a liability when it comes to using sharp tools etc, so it's something that was stopped, although I still have my tools. But no doubt these will be sold off before I do any damage to myself

Others go walking with groups, or meet other friends in pubs etc, where they have a good time.

I do feel that it's up to us all to keep fighting for as long as we can, because the thought of giving up is a step too far.

Some people like singing for the brain these days. However, although I was in a church choir for over 10 years, I no longer sing these days, because I cannot get out of my boots as far as my voice is concerned, so I would rather be doing something that I can still enjoy doing.

I no longer swim because of coordination problems, because these days, when I move my arms while swimming, my mouth opens, and I end up swallowing more water than enough, so this was stopped.

However, it's good to hear about groups for people with dementia etc, these days because people really need to remain active and mix with others where ever possible. 

I admit that these days I struggle due to my memory, Osteoarthritis in my knee and hip joints, as well as my breathing problems.

But I still carry on at my own pace and that's important to me, as well as my family 

Photography keeps my brain active and allows me to take photographs of landscapes and wildlife, and to me that's very important.

When I am out taking photographs, people always stop and speak, so I am never alone. It's amazing how many times a photographer has come up and spoken to me, and perhaps told me where to get photographs of different things. 

Yes, I can have bad days when I don't remember the camera settings, but it's not the end of the world.,

These days I stick to automatic settings most of the time, because I struggle to remember the manual settings, and while it's upsetting to lose that part of the hobby, I do feel that it's not the end of the world. 

The fact that I enjoy going out with my camera, and enjoy myself is all that matters. 

I think everyone should be encouraged to remain active and mix with others while they can still do it.

.





















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 hobbys 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 walking sticks as a hobby, and that is amazing to hear about.

I used to love wood carving, but these days, with lack of coordination, I am a liability when it comes to using sharp tools etc, so it's something that was stopped, although I still have my tools. But no doubt these will be sold off before  I do any damage to myself

Others go walking with groups, or meet other friends in pubs etc, where they have a good time.

I do feel that it's up to us all to keep fighting for as long as we can, because the thought of giving up is a step too far.

Some people like singing for the brain these days. However although I was in a church choir for over 10 years, I no longer sing these days, because I cannot get out of my boots as far as my voice is concerned, so I would rather doing something that I can still enjoy doing.

I no longer swim because of coordination problems, because these days, when I move my arms while swimming, my mouth opens and I end up swallowing more water than enough, so this was stopped.

However it's good to hear about groups for people with dementia etc, these days because people really need to remain active and mix with others where ever possible. 

I admit that these days I struggle due to my memory,  Osteoarthritis in my  knee and hip joints, as well as my breathing problems.

But I still carry on at my own pace and that's important to me, as well as my family 

Photography keeps my brain active and allows me to take photographs of landscapes and wildlife, and to me that's very important.

When I am out taking photographs, people always stop and speak, so I am never alone. It's amazing how many times a photographer has come up and spoken to me, and perhaps told me where to get photographs of different things. 

Yes I can have bad days when I don't remember the camera settings, but it's not the end of the world.,

These days I stick to automatic settings most of the time, because I struggle to remember the manual settings, and while it's upsetting to lose that part of the hobby, I do feel that it's not the end of the world. 

The fact that I enjoy going out with my camera, and enjoy myself is all that matters. 

I think everyone should be encouraged to remain active and mix with others while they can still do it.
.


Monday, 13 November 2017

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 thought to be industrial Asthma, although I don't remember any tests being done.  However over the last two years this all changed,  when I finally got a diagnosis of Bronchiectasis and Emphysema

It seems that this all started when I was very ill with whooping cough as a child, and this Bronchiectasis damaged my lungs.

This was made so much worse because of years of working in industry.

After several  chest  infections a year, a new family doctor looked into my medical report and found that all of the chest infections were down to one infection which was deeply rooted in my lungs, and which refuses to go no matter what they throw at it.

I have found that after two weeks of antibiotics, I can be clear for around 8-10 weeks,   and then it all seems to start all over  again which is frustrating.

But during this time I had been told to use my inhalers more often than usual, so i carry one in my coat pocket these days. I also have an emergency pack of antibiotics, which I carry when I go on holiday

I also used a nebuliser to help my breathing and clear my lungs on a morning.

However this has now been  stopped  because one family doctor thought that the nebuliser medication was increasing my tremors.

It's very sad when this happens, but I guess it's all a learning curve, but the fact that the tremors got a lot worse, was enough for me to stop using the nubuliser all together.

The nubuliser had been a great help to me, but on balance the tremors were so bad last month that there really was no option

These tremors can be distressing at times when I can't hold a knife or  fork still at meal times,. 

So I  tend to eat using one hand,  while keeping the other hand out of the way.

Medication also causes problems with the Lewy Body Dementia, because the illness makes you sensitive to certain medications as I have found over the last few years.

I struggle with occassional graphic nightmares etc, and I was given medication to control it, but this caused more problems in the beginning, and had to be cut down to a manageable dose. 

So it's a delicate balancing act when it comes to medications, but luckily most doctors are aware of this problem, although there are  some doctors who don't always check before prescribing medication

However most medications are changed every so often if they don't seem to be working, and this causes extra problems with my memory, because I have to remember what to take and when.

Along with this,  I don't always remember how many times I have used things like inhalers. My brain just does not work remember things like this all of the time and that's distressing.

Thursday, 9 November 2017

Derby Dementia Group

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 supporting people living with dementia in Derby.  We are run entirely by volunteers and our activities are funded through grants, donations and fundraising.  We have been very successful so far in our efforts to fund our activities which allow us to put on social events and monthly day trips for our members.  For many of our members our activities are a lifeline and give them motivation to fight the progression of their condition and gives energy to their carers to keep on going.  For some, attending our events is the only time they get out of the house.
 
We are starting a new fundraising campaign through Virgin Money Giving and would be grateful for whatever you are able to do to advance our cause.  For our campaign to gather momentum we need to spread the word as far and wide as we can so can I please ask you to forward this email onto your friends and relatives to help us raise awareness and hopefully gather some funds along the way.
 
This is the link to our Virgin Money Giving page which will give you some information.
 
 
Our website will also give you an insight into what we do so please find the time to have a look.
 
 
It takes around £15,000 a year to support our 230+ members so any help, however large or small, will always be gratefully received.
 
Remember, all of us at some point in our lives will be touched by dementia, either directly or through someone we know.  With proper support life doesn't have to end when dementia begins.
 

Regards
 
Dave Roberts
Chair
 



The Hardy Group




       

Find out more

Charity details

Registered address
7 Gleneagles Close,Mickleover
Derby,
DE3 9YB
Phone
01332553031
Email us
Visit our website
Charity number
1169563

                           


Homepage


Life doesn't end when dementia begins. Believe it or not, with the right support and stimulation, you can live well with dementia!

members

The Hardy Group is a thriving social group for people living with dementia who wish to stay active through a programme of events and social gatherings. It is made up of people with dementia and current and past carers who through their own experiences support each other along their journey with dementia. The group has a very wide age range from the under 60’s to the over 90’s!


We are run entirely by volunteers most of whom are living with, or have lived with, dementia themselves. Our income comes from grants, donations and fundraising and every penny goes on providing support for our members. It is all about having fun, living life as fully as we can, making new friends and supporting each other in a community built on common challenges and mutual understanding. 

Through our social get -togethers and monthly days out we have created a sense of fun and excitement that helps motivate our members to keep on fighting the progression of symptoms and keep them out of the care system longer.

Social meeting

Social isolation is a major risk with dementia as the stigma of the disease frightens many people away. For some of our members our activities are the only times that they get out the house. Hardly surprising then that our coffee mornings regularly have over 120 attendees and that we need 2 coaches for our days out!


Days out

The mental stimulation and moral support that we provide is crucial. Our members are amongst like-minded friends so that they can be themselves. Nobody will judge them so they can let their hair down and have some fun. We laugh a lot and for a while at least it is possible to feel normal again. Everyone leaves our activities with a smile on their face.



Trustees

Dave Roberts
Chair
Sue Atherton
Secretary
Tony Muldoon
Treasurer
Bernard Crowther
Membership & Activities

Volunteers

Ann Crowther
Angie Soppett
Heather Roberts
Heather Govier
Jean Bailey
Sara Bailey
Carole Wheatley
Dave Harrison
In Memory Of Geoff Atherton, Founder Member. 1944 – 2016



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