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Showing posts from 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 na…

What is Dementia with Lewy Bodies

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http://lewybody.org/What is Dementia with Lewy Bodies


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 th…

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 rel…

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 o…

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

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From the Daily Mail
When Parkinson’s and dementia strike together: Reports suggest Robin Williams suffered this cruel double blowBoth Parkinson’s and dementia affects around 100,000 BritonsRobin Williams might have been affected by this ghastly disorderHe’d suffered from Parkinson’s for three years
+2 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…

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 …

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 supp…

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 whe…

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 h…

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 …

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 th…

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…

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

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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 The 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 anaesthetis…

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 dementi…

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…

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.

Courage of the 12-year-old girl fighting dementia

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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 dementiaCharlea Armstead, from Oldham, has rare condition Niemann-Pick Type CIt 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 
+6 C





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 gra…