Friday, 28 November 2014

Changes in diagnosis

Many people struggle to get a diagnosis of dementia, either because they refuse to accept that there is nothing wrong, or because they cannot get beyond a family doctor.

The diagnosis is difficult anyway as there are so many variations.

 There may well be around 12 types of dementia, but within that there are over 120 variations, so no two people have the same problems and symptoms, even in the same type of dementia.

This starts with memory or cognitive problems, leading for full blown dementia.

However I have been totally amazed at the number of people, who were given a diagnosis of dementia, only to have it overturned later by a different consultant.

Some  of these have said that this re diagnosis was done in a very uncaring manner, as if they had been putting the illness on.

But who in their right mind would want dementia, let alone make it look as if you were struggling with an illness you do not have 

This must be very hard, when you still have the same problems, yet the liness name has changed.

The diagnosis of dementia  hits you hard when it happens, and takes da lot of getting used to it, but if it then gets reversed it must be extremely hard to accept.

However these days when there is uncertainty about the diagnosis people get the, diagnosis of mild cognitive impairment, where there are problems with the memory etc, but it may not lead to a formal diagnosis of dementia.

When some people are rediagnosed these days, they are labeled with mild cognitive impairment, simply because the brain has not deterriated as much as it should have done with full blown dementia, and this in turn leads to stress, after living with the term of dementia for perhaps four or five years.

Yet many of these people fight to keep themselves active which is good

It's a very strange illness, because I have hear stories of people living with mid to later stages of the illness, yet there was little evidence as far as the brain was concerned.

Before mine started I was very ill in hospital with viral pneumonia,  and then a year later things went from bad to worse. I never realised until much later that viral pneumonia had actually wiped much of my memory clean, and much of my job had disappeared, never to return. 

I gather that there are many illness which can mimic dementia, but I do not understand this at all.

Sunday, 23 November 2014

What is Dementia with Lewy Bodies

What is Dementia with Lewy Bodies

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Dementia with Lewy bodies (DLB), also known as Lewy body disease, is the second most frequent cause of age-related neurodegenerative dementia. At least 5 percent of people aged 85 and older are thought to suffer from this little known but not uncommon and devastating disease. In the UK approximately 100,000 are thought to suffer from DLB.
There are presently over 700,000 people with dementia in the UK and this number is projected to rise to 1,000,000 by 2021 unless cures are found. There are currently about five million people with dementia in the European Union. These figures represent only patients; caregivers double or treble the number of people whose lives are directly affected by dementia and relations and friends increase these numbers further.
DLB shares mental symptoms, such as confusion and loss of memory, with Alzheimer's disease and motor symptoms, such as gait and slow movement, with Parkinson's disease. For that reason it is often misdiagnosed. Accurate diagnosis is essential for successful treatment of the disease: people with DLB are characteristically highly sensitive to certain drugs which can worsen unpleasant symptoms or even be fatal.
DLB was virtually unknown until a decade ago. Due in large part to a close collaboration between researchers in the UK, Japan and the USA, it is now recognised as a distinct medical condition and not a variant of Alzheimer's or Parkinson's diseases.

Symptoms and Diagnosis

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Each case of dementia with Lewy bodies (DLB) is as individual as the person who suffers from it. Different people will show different combinations of symptoms. At present a diagnosis of DLB can only be confirmed by autopsy but a careful clinical evaluation of the patient and his or her symptoms can, in many cases, form the basis for making a reasonably confident lifetime diagnosis.
The symptoms of DLB can be grouped as central, core, suggestive or supportive [1].
The central symptom of dementia with Lewy bodies is dementia , or progressive mental decline serious enough to interfere with normal daily activities. Significant memory loss may not develop until later. There may also be problems with attention, problem solving and spatial awareness. This can easily be mistaken for Alzheimer's disease or for Parkinson's disease (PD) with dementia.
Core symptoms: Dementia along with the existence of one of the core symptoms listed below can lead to a diagnosis of possible DLB. Two of the core symptoms in addition to dementia and the diagnosis of DLB is probable.
  • Fluctuating states of consciousness

    Typically people with DLB will experience extreme swings from alertness to confusion. These occur unexpectedly over any period of time, from minutes to days. If a person who has been diagnosed with Alzheimer's disease can sometimes play cards or follow a game of cricket, it could be DLB instead.
  • Visual hallucinations

    Two-thirds of patients with DLB experience vivid and recurrent visual hallucinations. For some people these are pleasant visions of animals or small children but others have terrifying, threatening hallucinations, which cause them - and their carers - intense distress.
  • Spontaneous Parkinsonism

    People with DLB experience motor difficulties seen in PD patients such as slow movement (bradykinesia), rigidity and falls but sometimes do not experience the tremor which is characteristic of PD. With DLB there tends to be greater difficulty in walking, balance and facial impassiveness than in PD [2, 3]. In both diseases the patient may suffer from autonomic symptoms such as sudden drop in blood pressure upon standing, difficulty in swallowing , incontinence or constipation [4, 5].
Suggestive symptoms: One or more of these symptoms in addition to one or more core symptoms can lead to a diagnosis of probable DLB. One or more suggestive symptoms without any core symptoms is enough for a diagnosis of possible DLB.
  • Disturbances in REM sleep

    REM sleep is the deep sleep in which people dream. A certain amount of good, undisturbed REM sleep is necessary in order for people to function efficiently. DLB sufferers may talk in their sleep or act out their dreams. Some times this is so marked that the sufferer may fall off the bed.
  • Severe sensitivity to neuroleptic drugs

    Sometimes people with DLB are prescribed neuroleptic (anti-psychotic) drugs to help with their symptoms. This should only be done by someone experienced in the illness as many of these drugs can be extremely harmful or even fatal to people with DLB (see Treatment).
Supportive symptoms: These may assist in a diagnosis of DLB but are not conclusive in themselves.
  • Fainting
  • Falls
  • Problems with swallowing or continence
  • Delusions
  • Depression
  • Other hallucinations ( hearing, smelling or feeling things)
A diagnosis of DLB is less likely if the person has had a stroke or other illness which may have affected motor or mental ability. top

What is Dementia with Lewy Bodies?

Dementia with Lewy Bodies (DLB) is the second most common cause of dementia in older people, affecting approximately 130,000 individuals in the UK together with their carers and relations. It is sometimes also referred to as Lewy body disease or Lewy Body dementia.

What are Lewy bodies?

Lewy bodies are deposits of abnormal proteins inside brain cells and are named after Dr. Friedrich Lewy who first described them under the microscope in 1912. Lewy bodies are associated with the death of brain cells and subsequent deterioration of the brain.

What are the symptoms of DLB?

DLB shares characteristic symptoms of Alzheimer's disease (AD) and Parkinson's disease (PD), with both mental and motor problems. There are problems with memory, concentration and other cognitive abilities similar (but not identical) to AD and difficulties with balance, movement and autonomic functioning (bladder, bowel, blood pressure control) as in PD.

How is it different from AD and PD?

People with DLB characteristically experience dramatic swings in their level of alertness, fluctuating from clarity to confusion, often in a short period of time. Visual hallucinations are common in DLB, typically of people and animals, which are vivid but silent. Although they may have other Parkinsonian symptoms, the tremor associated with PD is not always present. Because DLB, AD and PD share so many symptoms, diagnosis of DLB can be difficult and requires an experienced specialist e.g. in old age psychiatry or neurology. Accurate diagnosis is essential for successful treatment.

What treatment is available?

At present there is no cure for DLB but symptoms can often be alleviated. Research indicates that some AD drugs may be helpful for people with DLB. Parkinson's drugs may help some people with the motor symptoms but can increase confusion in others. Prescribing should generally be started by a doctor with experience of DLB. Some types of drug (antipsychotics) drugs should not be given to people with DLB as they can be extremely harmful. Non-medical interventions such as a daily routine, physical activity where possible and changes to the environment are all helpful in managing daily life. 

Asking for help

I received this on Saturday, and wondered if anyone could possibly help with this.
I do have a forwarding email address, and will pass it on if needed

Hi Ken,

I'm delighted reading your blog as I'm learning so much about the LBD. I'm not directly dealing with it, as I live in Canada, but my uncle, who lives in Colombia, South America is who suffered it, been diagnosed about 4 years ago. His father, my grandpa, suffered from Parkinson's, so at the beginning we thought my uncle had it also. Now, we think that because my uncle was a university professor in chemistry for many decades, the exposure to many chemicals at the labs could' be a factor in developing this disease. However, we don't know for sure. Unfortunately in Colombia the information and resources are even more limited that in NorthAmerica. We are also trying to find if there is a way his brain can be donated for further  studies that in a future can conduct to find a cure for the LBD. If you have any related information  whether regarding the body donation, or the relationship between chemicals and the disease, I would greatly appreciate if you could share it with us. I would also would like to ask your permission for sharing your blog with my relatives, especially those who are taking direct care of my uncle, to help them to understand more the processes and circumstances he is enduring.

Many thanks in advance for your understanding!

Sandra Nathalia Bellina.

Lewy Body Association
Lewy Body,uk 

Saturday, 22 November 2014

Robin Williams RIP

It has been a very sad month, for millions of film goers, who remember the actor Robin Williams, who they thought the world of, due to his many roles in many films, some serious and some hilarious.

He was a man who by all accounts got right into the person he was acting, and I suppose this must have put a lot if pressure on him over the years

Robin was diagnosed as having Lewy Body Dementia, and for reasons known only to himself, sadly took his own life

This is not a very nice illness to live with, and no two people have the same problems.
We are all individuals with individual problems and symptoms.

Robin is one of a host of well known actors and personalities, who had been diagnosed with a neurological disease, such as Motor neurone disease, Parkinson's disease, and Lewy Body Dementia, to name a few.

Many people found ways to cope with their illness, but as many of us living with the illness know, it has its down sides at times, things like depression, which can be hard at times

Many of us lost our jobs through the illness, and this could have hit Robin hard.

I was famous or a Star like Robin, but I was a University College Engineer, but in the end I could not remember how to do my job, something which hit me hard at first, but now it's all gone. 

Robin could have been struggling to remember his words, or could have been in the position where the future, filled him with uncertainty and  fear. 

Many people with Lewy Body Dementia, do not struggle with short term memory problems, but some of us do, as this causes problems, as we feel as if we do not fit in with the model symptoms.

However as I was told recently, people sometimes have extra problems which are mainly cause by mixed dementia's, so they could have say Lewy Body Dementia and also Alzheimer's disease, where people do struggle with short term memory. 

Robin was a super star, and very well loved by millions of people, as well as his loving family, who must be devastated by such a sad loss. 

Many people have openly said that, he would have been a wonderful ambassador to all who have this illness, but this was not to be

Rest in Peace Robin, and God Bless your family 

Friday, 21 November 2014

When Parkinson’s and dementia strike together: Reports suggest Robin Williams suffered this cruel double blow

From the Daily Mail

When Parkinson’s and dementia strike together: Reports suggest Robin Williams suffered this cruel double blow

  • Both Parkinson’s and dementia affects around 100,000 Britons
  • Robin Williams might have been affected by this ghastly disorder
  • He’d suffered from Parkinson’s for three years
It has been reported that Robin Williams may have been affected by Parkinsonian
It has been reported that Robin Williams may have been affected by Parkinsonian
They are two of the most devastating conditions — but the cruel double whammy of both Parkinson’s and dementia affects around 100,000 Britons.
These people have Parkinsonian symptoms — slow movement and problems with gait — as well as confusion, memory loss, hallucinations and delusions associated with dementia. 
They may get Parkinson’s first, then develop dementia a year or more later — known as Parkinson’s dementia. 
Or, if dementia is diagnosed before or at the same time as Parkinson’s symptoms develop, they are said to have ‘dementia with Lewy bodies’ — a type of dementia that shares symptoms with Alzheimer’s disease and Parkinson’s.
Parkinson’s dementia and dementia with Lewy bodies are the same problem — the difference is the order of the symptoms.
It’s been reported that the actor Robin Williams might have been affected by this ghastly disorder when he took his life this summer. 
He’d suffered from Parkinson’s for three years — then last week a leaked pathologist’s report revealed there was ‘diffuse Lewy body dementia’ in his brain.
Lewy bodies are tiny clumps of abnormal proteins produced by the brain when its cells are not working properly. 
They cause memory problems, although these don’t tend to be as severe as with Alzheimer’s — which is linked to a build-up of the protein beta-amyloid.
Another key difference is that Lewy body dementia affects regions of the brain responsible for vision, causing powerful hallucinations, nightmares and spatial-awareness problems.
Studies suggest that up to 80 per cent of people with Parkinson’s will develop Parkinson’s dementia.
Professor David Burn, clinical director of the charity Parkinson’s UK, says: ‘People with Parkinson’s will already have Lewy bodies in the bottom of the brain, which controls movement. 
'In Parkinson’s dementia, the Lewy bodies spread up to areas involved in memory, cognition and vision.
‘For the patient with dementia with Lewy bodies, the problem starts at the top of the brain and spreads down — they tend to go to their doctor with cognitive problems, then develop Parkinson’s or get both simultaneously.’

In your 50s, the illness is more likely to start as Parkinson’s. Dementia with Lewy bodies usually affects people in their 70s, says Ian McKeith, professor of old-age psychiatry at Newcastle University and chairman of the Lewy Body Society
Diagnosis is usually via a brain scan that tests for dopamine, a chemical that is lower in people with Parkinson’s and Lewy body dementia.
Symptoms vary — but it’s a harsh blow for patients, says Professor Burn.
Margaret Kelly would agree. Her husband Reggie, 76, a father-of-three and former supermarket 
manager, was diagnosed with Lewy body dementia in 2009, when he was 71. 

Up to 80 per cent of people with Parkinson’s will develop Parkinson’s dementia
‘Every form of Alzheimer’s is cruel, but I do think this is the cruellest,’ says Margaret, 75, from North-East London.
‘Reggie was such a fit man. Now he’s like a baby. He can’t speak and he’s so confused he doesn’t know me any more.’
Four years before his diagnosis, Reggie couldn’t move his legs away from the sink while washing up. 
Margaret then started noticing changes in his behaviour — he would become quiet and expressionless at times.
A GP diagnosed depression, but antidepressants didn’t help.
Reggie went on to develop a shuffling gait, and in 2006 a neurologist diagnosed Parkinson’s. 
Medication helped control those symptoms but in 2009 Reggie’s behaviour changed dramatically. 
‘He became terribly aggressive,’ says Margaret. 
‘He’d wreck the shed looking for a screwdriver. He’d never admit he couldn’t remember where it was.’
Memory tests showed signs of Lewy body dementia. Around this time, Reggie started having hallucinations, some of which were horrific.
Since his 40s, he’d suffered with nightmares and restless leg syndrome — the urge to move your legs at night. 
It is thought there may be a link between sleep disturbances and Parkinson’s and Lewy bodies.
The cause of Lewy body dementia is largely unknown but the risk increases with age. Both Lewy body dementia and Parkinson’s are slightly more common in men. 
Patients may be prescribed Parkinson’s medication and cholinesterase inhibitors, such as Aricept and Exelon. 
These particularly help with hallucinations, says Professor McKeith. Correct diagnosis is vital, as some Parkinson’s drugs can worsen hallucinations.

A U.S. study found half of patients with Lewy body dementia saw the doctor more than ten times before diagnosis.
Although dementia and Parkinson’s specialists are well aware of Lewy bodies dementia, GPs and the public are less so. 

Motor symptoms of Parkinson’s can mask cognitive issues. 
And hallucinations, delusions and movement problems aren’t usually associated with dementia, as Bridget Hunt discovered after her mother Rose developed Lewy body dementia.
‘We never thought it could be dementia because of the hallucinations,’ says Bridget, 60, of York. Rose started seeing things in her early 70s. 

Other symptoms included struggling to add up, shuffling, a tremor in her arm and spatial-awareness problems.
At 80, she was finally diagnosed with Lewy body dementia. Aricept slowed the disease down, but her increasing disorientation is difficult to witness, says Bridget.

While Rose still lives at home, Reggie moved to a care home in 2011 after a serious fall. Margaret, who is disabled, visits him every week.

‘I desperately want to take him home,’ she says. ‘He’s not the same man I knew but we’ve still got him.’

County Durham and Dementia friendly towns

Many people including local councillors think that once they have done a dementia friends course, they know it all, and need not do anything else, something that many know is wrong.

A dementia friends course is only the first step, and we are supposed to take things further, but how many do.
I have seen a few communities go dementia friendly, and they have thrown even thing at it, to ensure that people with dementia get a better deal and are treated with respect. But to many, it's just a badge and nothing else.
To ensure that communities are genuinely dementia friendly, we must also consider things like traffic calming, something that Durham County a Council refuses to do.

In our town the traffic races in from the bypass, and then races through the town. 

There are very few places where you can cross safely unless you are on the main shopping street,  where there are pelican crossings.

 In our area where there are a lot of elderly and a care home, but you just have to take your chances at crossing the road, because the motorists start to accelerate once you step onto the road. 

I heard a few months ago that this town was going to become dementia friendly, but how can they, when they don't consider things like traffic calming etc, which not only have an effect on people with dementia but also many disabled, people with hearing or eyesight problems.

However there are problems on the main shopping street also, because even though this is supposed to be buses only, and restricted to 30 miles per hours, ambulances sometimes race through the town centre at speeds sometimes exceeding 40 miles per hour. The fact is that some parts of the road are very narrow, as are the footpaths,  so if you are not careful you can be hit by the wing mirrors of buses etc as they pass. 
I have had to jump a few times when my hearing has been playing up, so how will someone with other illnesses cope. 

I once spent a whole day doing two sessions at county hall talking about dementia, and at the end I realised that apart from possibly 6 people out of well over 50, who were interested, the rest did not care less, and I am convinced things are still the same.

This council refuses to reduce the speed limit to 20 in this area alone even though there are two schools, a church and a care home within 500 yards, they also refuse to have crossings until someone is either killed or injured, so can this town and county ever be dementia friendly, I think not.

 The sad thing is that many of these councillors either moved in to take up council positions, or they are union people doing the job as community work in councils to help them selves up the ladder, they were not born here, neither have they lived here for long. I guess it's the same in many counties.

But we must remember that dementia friendly towns etc, is more that putting a dementia friends sticker on a shop window, it's also about making towns safer to live in. 

If people are genuine about dementia friends and dementia friendly towns and villiages, they must take on board, that's it's far more that just making shops dementia friendly, it's also the enviornment we live in. 

If these councils are really genuine about being dementia friendly, they should listen to people who have the illness, the real people who know what the problems are, and what needs to be changed.

It's simply not good enough to send professionals, who have no real idea what it's like to live with dementia. 

Thursday, 20 November 2014

Response to yesterday

I was amazed at the responses I got to yesterday's blog, which someone else asked me to write. Why am I ashamed of Lewy body dementia.
 As I said yesterday, there is no way I am ashamed of the illness, as i have done nothing to deserve it or attract it. It's just one of those things that happens in life.

But I got some very negative responses from people and some brilliant ones.

Over all most people agree that I have managed like many other people to turn a bad situation into something well worth while.
Yes I know my brain is not what it used to be, and I cannot do the job I was trained to do, but the illness has helped me to move on and try to help others, who go on to be diagnosed with one form or another of dementia.

I have lost hobbies, and struggle with others, but I am alive, and it am able to do speaking at events about living with the illness.

While I did not want to write this blog in the first place, and would never have done so if I had not been asked to do so, 
But I suppose it help to put one thing to bed completely.

I think in the future I will be more thoughtful about the topics I write about, as this one took me two days to write, and even then I was unsure ifi had used the right words.

I will try to publish all of the responses, when I am thinking clearly, as the system is not allowing thus to happen for some weird reason.

Wednesday, 19 November 2014

Am I ashamed of having Lewy Body Dementia?

I was asked yesterday via an email, to think about writing a blog about  the following," Feeling of being ashamed of having Lewy Body Dementia".

When I read this I was close to deleting it, because it made me feel very sad.

There may well be some communities where this illness is classed as something to be ashamed of, but this has no effect on me personally. 

As with everyone else who has this illness, we simply have no option but to accept it and get on with life.

I lost my job as an University College, Electrical Engineer, and do not remember much about it, it's all gone.

I no longer remember how to do my job. My electrical exam papers, which I still have in a folder, mean nothing at all to me, it's like trying to read in a foreign language

I once rewired the College Chapel, yet now I struggle to fit a 13 amp plug, but that's life.

I also used to run two budgets, but ended up counting in my fingers, which was distressing at the time.

I sometimes feel embarrassed when I need to rely on other people, but never ashamed. I just have to admit it and move on.

Do people with an illness like Cancer feel ashamed these days?

 I know in the 1950-60s people were sometimes ashamed of speaking about it, but things have moved on these days. 

There has been a lot in the press about people being ashamed of having dementia, but I do wonder when thinking about it now, whether the press are using this as head line grabbing, rather than putting out the true picture, of life with dementia.

I do feel that while the press can be helpful, some of them just use an illness like dementia to sell papers and scare us all etc, rather than be helpful to us. 

There may be a lot of elderly people who are ashamed of having dementia, but perhaps these people remember the old stories, and I feel very sad for them.
Some of these stories make me cringe with horror, but we are all so very different, with different symptoms and problems, and no two people go the same way.

I know that I was totally shocked to get the diagnosis, at the age of 56, simply because I had only ever heard of Senile Dementia, and confess that Lewy Body Dementia sounded weird to say the least.

At this time I had never heard of anyone like myself getting this illness, where these days people are being diagnosed earlier than I was, some in their thirties and perhaps younger.

Then my consultant explained that there was various types of the illness, some of which had causes like strokes etc., where others were unknown

I was worried at the diagnosis, as I had no real idea what was going to happen to me, but part of me was determined to carry on, as if the diagnosis had never happened.

I had a brilliant consultant who encouraged me to carry on, and enjoy each day as it comes, and never try to do the things which have become impossible to do anymore, as that would be stressful.

But she said I should try new things, if I was up to it.

From this point I never really looked back, because I went on to give talks about living well with the illness, and that was something that would have been impossible while I was working.

 The mere thought of standing up in committees in the University shook me with fear, now I take it in my stride, perhaps because I am determined to fight this illness and the stigma, we hear so much of these days. 

As I said I am certainly not ashamed of having the illness, as I have done nothing at all to get it, or as some people think "catch it", because it's not contagious. 

So why should I be ashamed.

Its comments like "shame" where we lose friends, because they feel ashamed to be around us, and in that case I feel shocked and ashamed of these people, because they have no idea, of the stress they have caused. 

Many of these were academics of one sort or another, and that made me very angry, and ashamed to have anything to do with them, because in my view they should have known better. 

But I guess that's how many of the modern day University Academics think these days, when they work in the large well know Universities.

However some families have experienced the same thing, from other family members, and that to me is disgusting, and proves that they know nothing at all about the illness.

It's not that we have done anything to catch this illness, but I personally feel that people who use words like shame, when talking about any form of dementia, are treating it like a dirty disease picked up on the back streets, something we know is totally wrong.

Other people may feel that, but this is all part of the stigma we see and hear of every day.

I know that there are some people who may well be ashamed of the illness, and refuse to talk about it, or admit that they have it, when it comes to friends and family.

 But I have always been quite open about it, because as my consultant said at the start, it's nothing to be ashamed of, it's just a disease of the brain

Like it or not many others have diseases of the brain, which are accepted like Parkinson's etc., so why not any form of dementia. 

Never be ashamed of this illness, which ever form it may be.

If you are diagnosed early enough, go out and try to enjoy your life while you can, take each day as it comes, and never get upset at not being able to do the things you have done for years, as that will only make things much worse.

I am no angel, because I know when things go wrong, I sometimes get upset, annoyed and occasionally curse the illness, but I am certainly not ashamed to say that I have Lewy Body Dementia

Through this illness I have been able to speak to thousands of people all over the UK, and these days I spend time talking to graduate nurses in Universities about the illness. 

So does that sound like someone who is ashamed of having dementia, far from it?

Tuesday, 18 November 2014

Routines in dementia

When I was diagnosed as having early onset Lewy body dementia, my consultant told me to do a few things to help get through the day, and also keep the brain active.

One of these was to set up a daily routine.

This takes in most things I do, from getting out of bed on a morning, until I go to bed at night.
It also takes in medication, although my wife sets this all up in a box, on a weekly basis, but still somehow manage to miss the occassional dose. 

These routines not only help us, but also relieve the pressure on our carers and family members, as it allows us to get on with our chores on our own. This also allows our carers to get on with other things without having to check whether we have done things for ourselves.

However there are pitfalls in this, if I am away from home, in a hotel, or staying with the family as some of this changes.

Things also go wrong if something like the door bell or telephone ring, then I forget where I got to, which can be stressful at times
One day I went to have a shave, and someone telephoned our home so I had to answer as my wife was busy.

It was a few hours later when we were out shopping that I realised that I had shaved one side of my face, and missed the other when the telephone rang. That felt very embarrassing and I felt I had to get back home to shave the other side, even though my wife said that it was not as obvious as it felt.

But these things happen when you have this illness.

This has all been made much worse now, as I have extra things to take on board as I have problems with my hip and knee. 

I now have to do exercises, which takes around half an hour to deal with and this gets stressful.

The reason being that it has to be done in stages, counting up to five, ten times at each stage.

But the slightest noise, I forget where I am. 

This is the joy of living with this illness, and it proves that nothing is as easy as it seems.

But we have to keep trying, because we want to retain our freedom for as long as we can

An active brain fights to remain active and alive.

Monday, 17 November 2014

Dementia awareness

We all try to raise awareness one month every year. A massive effort is put into it in the hope it reaches as many people as possible. 
But is this simply a way of raising funds, rather than awareness to some charities.

At the end of the day dementia awareness should be done every month in as many ways as we can.
I am sure that if everyone who is interested whether they have the illness or are caring for someone, who has it, raises awareness as they travel around the message will get out much better, and the public will take to it better than assuming that it is just a way for charities to use the event to raise funds. 
Dementia awareness is not just September as a friends mentioned yesterday.
It's January, February, March, April, May, June, July, August, September, October, November, December
So please let's all remember that we must raise awareness every day, of every month of the year. Dementia  does and should not be publicised and pushed just one month of each year, because we are living with this every day of the year

A scanner which could help scientists develop better treatments for dementia

A scanner which could help scientists develop better treatments for dementia and other brain conditions is to be installed at a Scottish university.
The equipment will give scientists the clearest picture yet of what goes wrong in the brain when dementia occurs, the University of Edinburgh said.
It will also help doctors identify patients who are most likely to benefit from new therapies.
The scanner is said to be the first of its kind in Scotland.
Researchers will be able to use the device to look in detail at what is going on inside patients' brains, and to monitor the effects of their treatment.
The system combines Magnetic Resonance Imaging (MRI) scans with Positron Emission Tomography (PET) imaging to produce high-resolution pictures of the tissue of the brain.
It will allow researchers to track the movement of individual molecules within the brain's cells.
'Better understanding'
The Medical Research Council has awarded £6.8m to support the programme as part of the Dementias Platform UK Imaging Network. The funding will also support stem cell research into the ageing brain.
Prof Ian Deary, director of the University of Edinburgh's Centre for Cognitive Ageing and Cognitive Epidemiology, who led the bid, said: "Advanced brain imaging and stem cell research are likely routes to better understanding of the causes and progress of dementias.
"It is heartening to see the huge and fast-growing challenge of cognitive decline and dementia being tackled head-on by the MRC's Dementias Platform UK."
Other organs of the body can also be studied with the device, enabling insights into diseases of the heart, blood vessels, lung and various types of cancer.
The scanner will be housed by the Clinical Research Imaging Centre at the University of Edinburgh.
Prof Edwin van Beek, Co-Director of the University of Edinburgh's Clinical Research Imaging Centre, said: "The MRI-PET scanner will complement existing facilities at the University of Edinburgh, which are helping research across the spectrum of human health from pregnancy to ageing."

Saturday, 15 November 2014

Dementia mental tests

The other day I needed to take part in a Lewy body dementia project, something I agreed to do last year

I did this willingly, because unless we do things like this the professionals will never learn more about this illness.

However I had to take the Addenbrookes mental test at the Start of it all.

While some of this is fine, I really struggle with the part where I have to remember a persons, name and full address. Yes we get prompts when we cannot remember parts of this test, but the person doing this looked a little bewildered when I asked what this proved.

I was asked why I was questioning this as she did not seem to grasp why I was asking.
In the end I said,  it is in normal life we do not have the luxury of prompts to remember things, we either remember something or it's gone into the list of time.
I think this made the lady wonder if I was trying to be awkward, but I am sure that somewhere along the line she must have realised, that like it or not it's a fact.
We either remember what we are doing, or we forget, but like it or not my short term memory is rubbish at times
My wife my be good, but she does not always know what I am thinking about, or trying to work out.

I was told that this Addenbrookes test is to help assess people, which is fine, but please let us have tests which are meaningful to us, and not relying on prompts which need a yes or no answer.

In all fairness, if we do not remember the answer, we should be allowed to say I don't know, rather than be made to take a guess. 

Friday, 14 November 2014

Dementia risk may be higher for older people who have general anaesthetics

This is a subject I am interested in as I am due to have surgery on my knee and perhaps my hip next year. I confess that I am a little worried about this, but I am hoping that my doctor can steer me through the process 

Dementia risk may be higher for older people who have general anaesthetics

Study of 9,000 patients suggests general anaesthetics may affect brains as a result of postoperative cognitive dysfunction
Surgeons looking down on patientThe researchers, led by Dr François Sztark of the University of Bordeaux, say it is still uncertain whether POCD can be a precursor to dementia. Photograph: Richard G/Stock Image
Older people who have a general anaesthetic while undergoing surgery are 35% more likely to develop dementia years afterwards as a result, according to new research.
The study has reopened the question of whether anaesthetic agents may potentially affect the brains of children or elderly patients, as some evidence suggests.
Research from France being presented on Sunday at a conference of anaesthetists identifies postoperative cognitive dysfunction (POCD), a common delirium-like complication of major surgery in older people, as a likely cause of dementia that develops some years later. Some scientists believe POCD may be associated with dementia because of a common pathological mechanism involving the amyloid beta peptide.
Amyloid plaques are found in the brains of those suffering from Alzheimer's, by far the most common form of dementia, as well as dementia with Lewy bodies and Parkinson's disease dementia. Previous studies have suggested that certain anaesthetics may promote the inflammation of neural tissues and so lead to either POCD or Alzheimer's disease precursors, including amyloid plaques and neurofibriliary tangles. But the authors, led by Dr François Sztark of the University of Bordeaux, say it is still uncertain whether POCD can be a precursor to dementia.
Their research used data from the 3C study, which began examining the health of 9,294 people aged 65 or over in the French cities of Bordeaux, Dijon and Montpellier from 1999 in order to assess the risk of dementia and decline in cognitive function linked to vascular risk factors. Participants were checked two, four, seven and 10 years later. Each time the 7,008 patients without dementia were asked if they had had either a general or local anaesthetic since the last check-up. After two years, 2,309 (33%) had undergone one in that time, of which 1,333 (19%) were general and 948 (14%) local. In total 632 participants developed dementia over eight years.
Sztark's team found that, at the two-year follow-up, 37% of those with dementia had been exposed to anaesthesia, compared with 32% of those who had not experienced neurodegeneration. While 22% of the patients with dementia had had a general anaesthetic, 19% of those free of dementia had done so.
A summary of their findings, which are being unveiled at the annual meeting of the European Society of Anaesthesiology, states: "After adjustment, participants with at least one general anaesthesia over the follow-up had a 35% increased risk of developing a dementia compared with participants without anaesthesia." That risk is for general anaesthesia, not all anaesthesia, they stressed.
Sztark said the authors had a "95% confidence interval" in that level of heightened risk of a condition which 800,000 Britons already have, a number which is expected to rise to over one million by 2021 due to the ageing population. The true risk is between 11% and 63%, he added.
"These results are in favour of an increased risk for dementia several years after general anaesthesia." Health professionals should, he said, be aware of the possibility of POCD when deciding how to manage elderly patients who are being fully anaesthetised.
Dementia organisations responded cautiously. Dr Eric Karran, director of research at Alzheimer's Research UK, said: "This is early data and given the complexity of the findings we need to await the full peer-reviewed publication before fully interpreting the results. Research into the impact of anaesthetics on dementia is challenging because it can be very difficult to tease out cause and effect. Dementia is caused by several brain diseases, many of which arise from a complex mix of genetic and environmental factors."
Dr Doug Brown, director of research at the Alzheimer's Society, said: "The early results from this study support the view that anaesthesia may increase risk of developing dementia but questions still remain about why this is the case and whether other factors could also have a role to play."

Wednesday, 12 November 2014

The media and dementia

The press can in many cases allow us to put our stories across and raise awareness, which can be helpful, as we must try to remove the stigma and bad stories one way or another.

Many of us use the media in one way or another, to explain our stories of life with dementia, and we sometimes use the media in campaigns, raising awareness, writing books, or in magazines, and occassionally by blogging.

In some cases we have a lot of control as to what is written, where in many others, it's all down to the reporter or the editor, who may well be out just to get a hard hitting story. 

I have had the benefit of both sides of this coin, and where the good reporter and editor write your story, so that it's what you have said, the bad one will rewrite it to get the bad side or negative side of dementia and sadly we see a lot of this these days.

This to me proves that many simply use us to get a story, where others are genuinely interested in putting out a good positive story about dementia.
I have met many reporters, from newspapers and television, and have been left staggered at times by the way they change a story round to get what they want, whether we find it good or badly put over.
In one or two cases, I had asked to see a copy, before it was printed, so that I could ensure the story was correct. This came after a couple of very bad stories. But reading the copy before it goes to print does not guarantee, that it will go out the way you saw it. 

In two cases the story was rewritten by the editor, because they did not agree with my changes. That can be very hurtful and in some cases distressing.  

These days some television channels and newspapers have dedicated reporters who know how to deal with people living with a serious illness like dementia, and in many of these cases we end up with a story well worth reading, because it takes in your life and tries to put a good positive message over. 

These people normally go through everything prior to the interview, so that you know what the questions will be, and you also know that the answers you gave will not be changed, and this is the mark of a good press reporter.

These days in the media we also see stories,  about people who have died, or sadly taken their own lives because they could not cope with the illness, and I often wonder just how much of the story is true and how much is speculation.

 One which sticks in my mind is that of Robin Williams. Some reports said he was struggling with Parkinson's Disease, where over the last few days, they are trying to say that he was struggling with hallucinations within, Lewy Body Dementia. 

While many of us who have this form of the illness, can understand these problems. We also know that this makes life hard, if not difficult at times, not just for the person with the illness, but also family members

No one knows at present which story is correct, and until the facts are out in the open they should never comment. Now however the press are speculating about this, and in doing so they are causing extra distress to Robins family and close friends. 

So this is the negative side of the media.

While it is good to use the media we must ensure that they are high quality, know about dementia, and are prepared to go that extra mile to ensure the story is correct. 

Using the media can be very helpful in raising awareness of dementia, but we must make sure that the bad press are filtered out and not allowed to cover our stories.

Tuesday, 11 November 2014

Abused people and dementia

Last week we we're at a conference, run by the Samaritans were we heard about children whose lives were damaged by abuse.

I wondered just how many people were abused as children or teenagers, and then struggled with this when they were diagnosed with dementia.

I suppose because like it or not abuse haunts you throughout life, but when you have dementia, it will be fixed in your memories, and will never go away.

Because it's the bad memories which stick in the mind, more than the good ones

I always think of my mother, who was abused by her step mother as a child.

Many of the people who were abused as children or teenagers, had no one to turn to, because like it or not, the abuser was either a family member, or someone close to the family.

No matter which way it was looked at, no one would have ever believed those who were abused,they would simply close ranks.

When I was diagnosed, I had a few sessions with a clinical psychologist discussing my nightmares and bad dreams, and we discussed things which could gave an impact on nightmares and bad dreams, and this subject did get discussed.

The psychologist did say that many people who were abused, struggled for the rest of their lives, but it was very rare for them to go on and abuse others, because they felt so bad about it. But this is something which always causes many concerns. However very few go on to abuse others,  as the press's say.

They memory is too hard to cope with, they would probably end up living in fear of ending their own lives first,

But we hear of people's life stories these days, which take in the memories of happy times, etc, but somewhere along the line any bad memories will have a drastic effect on our lives and dreams, and perhaps haunt those effected

As someone who has had many horrendous nights with nightmares, I feel very sorry for those who had bad things happen to them as children or teenagers.

I have no idea what causes my own nightly horrors, but if someone struggles with abuse as a child, and ends up with dementia, my heart goes out to them.

Then we get those in the later stages of the illness, who are abused by their carers or care home staff. They cannot fight back, and have no defence against the abusers

These days we are also getting all of the publicity on the media about the Jimmy Saville case, and this is hurting many people, even though the press, don't really care. Seeing this on prime time television each and every day must haunt many people with dementia or mental illness, even though they may well gave been the victims of abuse as children. 

Bless them all.

Monday, 10 November 2014

Amazing meeting

Today I was invited to speak to the Durham Diocesan Council of the Mothers Union, about living well with Dementia. This was held near to the beautiful cathedral in the City of Durham

I confess that I was unsure just how it would go, as I felt out of my comfort zone, even though I am in all reality an atlas member of the Mothers Union, in other words a male member of the Durham Diocese.

But everything went well, and there were lots of questions from people, including one lady who was living with Early onset dementia.

My wife and I then went on to do a dementia friends session, as we were trained to do this, and that was interesting. I confess that I am no longer doing this training as, I find it hard some days, so I just help out as and when needed.

After this  we went to the chaple for a short service. This was one of the first church services I have been too which was in many ways dementia friendly. 

All in all it was well worth doing and very enjoyable.

Sunday, 9 November 2014

Courage of the 12-year-old girl fighting dementia

There are times when I feel bad, but Lord knows what this young girl is thinking of, because to me its very hard to accept this, she is so very young

Courage of the 12-year-old girl fighting dementia

  • Charlea Armstead, from Oldham, has rare condition Niemann-Pick Type C 
  • It is slowly robbing Charlea of memory and mobility - and there is no cure

  • She is one of only 82 people who currently have the disease in the UK 
  • Her mother Danielle Craig, 29, said she hopes there is a cure found soon 

Charlea Armstead, 12, is one of only 82 people in the UK suffering from a rare form of dementia 

Like many girls her age, 12-year-old Charlea Armstead dreams of being a ballerina.

She is seldom happier than when she’s dancing around to her favourite pop star Justin Bieber, or cuddling up with her mother on the sofa watching a DVD.

But despite her tender years and lust for life, the smiling schoolgirl is battling the debilitating effects of dementia, a disease more commonly associated with the elderly.

Her very rare neurological condition, Niemann-Pick Type C, is making her old before her time.

It is gradually robbing her of memory and mobility, and causing her to suffer other indignities such as incontinence and confusion. There is currently no cure.

Yesterday her 29-year-old mother Danielle Craig, from Oldham, told of her daughter’s incredible bravery in a bid to raise awareness of the degenerative condition.

‘We don’t know when this cruel disease will take Charlea. 

'We were told it could be two years or ten. Charlea is 12 and she’s still fighting. She never stops smiling,’ she said.
‘She has big dreams for a wonderful life. I just hope a cure is found soon so all her wishes come true.’

Charlea was born seemingly healthy, but at two weeks old she had to go to hospital after developing jaundice and a swollen stomach. Doctors then tested her for Niemann-Pick.

Miss Craig said: ‘The condition is so rare that a skin graft was taken from her arm and sent for analysis to France. It was six months before we got the devastating results.’

Charlea was eventually diagnosed as one of only 82 people who currently have the disease in the UK; there are thought to be just 500 cases worldwide.


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