Showing posts from June, 2014

Hospital shortlisted

A WEARSIDE dementia care unit has been shortlisted for a Nursing Times Award.
The Roker and Mowbray Dementia Unit, a state of the art 24-bed centre which opened in November last year, is part of Northumberland, Tyne and Wear NHS Foundation Trust’s specialist dementia care campus at Monkwearmouth Hospital, Sunderland.
Project Manager Grahame Ellis said “The Trust aims to provide first class care in first class environments.
“A great deal of thought went into developing the new unit, using international research based evidence on what works for people with dementia.
“I’m therefore delighted that the hard work and dedication of all involved is being recognised”.
The design of the £10million building included a collaboration with the world leading Dementia Services Development Centre at the University of Stirling, as well as the development of bespoke dementia friendly features by the trust’s own design team. In the six months the unit has been open, staff are reporting fewer falls and a reduct…

Wonderful Inspiring lady

Taken from the Mail online News Press

Woman astonishes doctors across the world after surviving for 20 YEARS with dementia ... while writing two books, delivering lectures and even finding new loveChristine Bryden was diagnosed with Alzheimer's at 46 years of ageDoctors told her she would be dead in eight years She says she's had defied the odds by challenging her brain in new ways  She hopes her story encourages others to fight back against dementia 
Almost 20 years after being diagnosed with Alzheimer's, Christine Bryden has defied all odds and stumped medical professionals by defying the disease and living a normal successful life.
After being diagnosed with early onset dementia at the age of 46 in 1995, the mother-of-three was devastated by her terminal prognosis. She was told she would need full-time care within five years and would be dead before she turned 60. And yet two decades later, Ms Bryden has reshaped medical thinking about the disease, writing two books, comp…

Involving people with dementia

This article got stuck in the system and I have managed to get it out

It is an old thought that people with dementia cannot get involved with anything.
However these days we are seeing people being diagnosed at an early age, an age where they can do so much, if they are allowed to do so, but this means that society in General has to make this happen.
Many of us are capable of being involved in many projects, and we are doing our best to change attitudes, change ideas and thoughts about dementia, so that things are done to suit us and not the professionals who think they know what we want.
So many of us are involved in reading publications, and wording them so that they are easily understood by joe public as well as those who have this illness. There is nothing worse than a publication, written for general release which Is full of medical jargon.
Some are involved with meetings setting up new methods of helping others who have the illness.
One or two of us are involved in giving presentation…

Information at point of diagnosis

This article got lost in the system but I managed to move it today
Diagnosis of dementia is hit and miss around the UK, which is very sad, as I would expect the health service to provide the same information everywhere.

Having had two diagnosis of Lewy body dementia, I was staggered at the diffences, in methods and information given after the diagnosis.
After the first horrific diagnosis, we were simply given the name of the illness, and I was then to to return 9 months later to be seen again. 
I then had to move as I lost my job, but when I went to see my new consultant, they found that the original hospital had lost my notes, so I has to be re diagnosed to check that I did have this illness.
However the second diagnosis was done in a more caring way, and at the end I had an interview with the consultant, where we were told about possible medications, along with the information about the Lewy body dementia. 
We were given information sheets about these, and were asked if we had any q…

Achieving something positive in dementia

After the diagnosis of one of other form of dementia, many simply give up the will to fight, some refuse to accept the illness, while some get on with a new life.
Yes it's very difficult to accept something like dementia, but if you are diagnosed early enough and are given the right support and help, you can learn to move on and enjoy life for a little bit longer.
Of course it all depends on getting the right help and support, and being encouraged to do many things.
When I was diagnosed my wife and daughter, would not let me dwell on the illness, and it was encouraged to keep active.
Once I realised that it was possible to live a new life with dementia, I never looked back as I started meeting new friends, and doing things that I would never have considered before, like standing up and speaking in public.
Not everyone can or indeed wants to speak in public, but on a good day it's amazing the response you can get.
I have been honoured to be a Dementia Ambassador, I have had civic awa…

PM encourages more research into dementia

After reading about the Governments Dementia research plans, it prompted me to think about it

Mr Cameron the British Prime Minister wants to encourage research companies to look further into possible cures for dementia.
This to many people with dementia is the holy grail, and we all live in hope that someone will come up with a cure sooner or later.

There are medications on the market which help slow the illness down but nothing that stops or prevents it.#

Many people think that this will never work, as its too costly, and many companies have looked at this over the years, and then gave up because of the failures and the vast cost involved. This research also costs millions of pounds with very little to show at times

As well as all of this we have to consider the fact that if something does come out of this, it may well be squashed by the British Governments own departments, like the National Institute for Clinical Excellence as being too costly, or not worth the money.
This group sto…

Government research into Dementia

Prime Minister David Cameron yesterday called for the UK to be more “dementia-friendly” to help sufferers and urged an increase in international funding for research to find a cure. He announced that the Government is doubling funding for dementia research to £66m, but insisted that other countries needed to step up their efforts to deal with the rising numbers living with the condition. Yet leading dementia experts in the North East say it is essential that more is done to help highlight the social impact of the condition. Dr Lynne Corner, a social gerontologist specialising in dementia research, and Director of Engagement at Newcastle University Institute for Ageing, was at the summit where Mr Cameron made his speech. She said: “It is of course good news that David Cameron has announced such an enormous boost to dementia research funding. Yesterday’s summit would also have been the perfect opportunity to highlight the social impact of dementia as well as the health aspects. “Dement…

Ipads and brain games

I have been asked many times how I still keep going, but much of this I think Is down to the fact that I spend so much time each day and sometimes at night doing brain training games on my ipad.
I know that I cannot beat these games, but I keep trying to do it, perhaps because I am stubborn. 
These games are built into these ipads and computers, so that you are not only trying to play the game, but also trying to beat the computer, something we really do not stand a chance at doing, but part of me still wants to at least try to do the impossible.
Some days with my tremor I struggle with the ipad but at least I can use my left hand to play these games etc, something I find impossible to do on my computer, but then I do not use that very much these days, simply because the ipad is much easier to keep control of. I do not have to keep looking down at the keyboard all the time, then forgetting what I am doing. 
I do find that these games are much more interesting then then television as I str…

Causes of stigma in dementia

There are many causes of stigma in dementia, but I do wonder whether it is I some way self inflicted. 
I say this because we are used to hearing about Alzheimers Disease, through out the world, and I do wonder if this has fuelled the stigma.
I say this because I have been asked many times, if the illness is contagious, and when I ask why anyone would ever think that, the same answer comes back.
If it's not contagious, why do people call it Alzheimers Disease?
I am starting to think that this has fuelled some of the stigma.
However most of it is caused by pure ignorance through lack of education.
Like Cancer in the 1960s people thought it was a dirty disease, caught by doing something you should never have done.
Yet those of us who have cancer or dementia have done nothing wrong to attract this horrible illness.
Many assume wrongly, that when you get dementia, you are unable to speak, of take a constructive part in life. I have been shouted at because the person thought, that once you get …

Relaxing weekend

I am enjoying a relaxing weekend at my daughters in Farnborough.
 It's been tiring and I admit that I had confusion a few times, but I think I am over tired as I am not sleeping well and the last two mornings I have been up at 5am, so I guess it's all mounting up.
The children have been lovely although they have also been very tiring at times, but that's what happens when we see each other once every few months. 
As with all visits I have been doing the gardening which is relaxing although it's very hot down here compared to home. 
All in all it's nice to be able to do something to help others.

Dementia training

My wife and I have been doing extra dementia work with local branches in the North East, after our branch manger asked if we would help.
We had both done Dementia Friends Training, so we decided to help out as they felt that they needed more training and experience from someone with the illness.
I as amazed at how they treated us, and in many ways it was well respected. So of that staff made life a lot easier with their warm attitude which helped me to enjoy the early mornings.
This has been an amazing experience as there is so much interest by the staff, at getting this right in the community.
Although it gets tiring as it's all early in the morning, I have done it as as it's only once a week.
As well as this their staff did awareness walks between the branches during dementia awareness week and helped raise a lot if money
I can only commend Lloyds bank for doing this, and also commend my dear friend Trevor Javis who got this all started at lloyds bank.

Rough night busy day

It's been a very long rough night, but this morning has been busy, starting with dementia friends training at another branch of Lloyds bank in Bishop Auckland.
I ann now relaxing on an East Coast train heading towards London. 
I am a bit wobbly today and my eyes are not brilliant, but at least I know that it could be worse
It was decided that I needed a rest with my grand children in Farborough, so I am heading off there after London.
I don't really like long journeys these days, but at least it's fairly controlled and quiet in First Class.
Here's hoping for a relaxing weekend.

Problems with the blog

I have been experiencing problems with my blog over the last two weeks, and it all stems from when my computer needed repair work.

I did wonder if someone had tried to hack into the blog, but I am not sure

I spent last night trying to sort things out and somehow managed to mix up some of the blogs, so they are no longer in the correct order, or at least the last few are out of order.

I have also had people sending e-mails, telling me that they cannot send messages any more. I am not sure what happened with this but I will try to sort it all out tonight if I am up to it

Calming music in dementia

Over the years I have always loved music, but my choice of music has changed quite a lot since my youth.

Back in my teenage years I loved things like the Beatles, Cliff Richards and the Shadows, but also liked Classical music, something my father thought was odd at the time, because as he loved dancing he thought dance music was the best. I don't think he really understood why I liked classical music, and perhaps at that time thought I was a bit odd, however  a few years later he himself started to listen to the same music as he found it relaxing

However a lot of music we listen to during the day, is no good at night when you have any form of neurological illness like dementia.

This is because the rhythm could cause many problems if its too fast or noisy

I find this distressing to think I really enjoy a piece of music during the day, but if I wake up from some distressing graphic dream or nightmare, the same piece of music can actually make things much worse

There are lots of CD…

How feelings change in dementia

When a person gets a diagnosis of dementia their whole world is thrown into chaos, as something's are lost for good, and things like tastes totally change.

We are all brought up with beliefs and guidelines, but in many cases these also disappear as I have found over the last three years.

In life we grow up with many ideas and in some cases strong beliefs, whether religious or not.
I always had a strong belief in my religion until this illness started, then the wheels started to come off.

I think its the way my brain has gone, but that is out of my control, on most days, as things change so much, and that is something that is distressing, whichever way it goes.

However over the years my views on certain subjects have change quite a lot, and my tastes in foods have changed so much

that its hard to accept that its the same person that I was 10 years ago.

But my religion like many things have been pushed to the limit, and I am in the position now where I am not sure what I believe an…

Getting the right information at the diagnosis

I know that we are all vastly different, but I do wonder just how many people get the right information and support after the diagnosis of dementia has been given.

I had the benefit of having been diagnosed twice, but on both occasions the support and advice given was totally different.

After the first diagnosis, we just told that I had Lewy a Body Dementia, and then told to go away for 9 months, as I was not ill enough for the medication.

As my wife kindly pointed out, a lady could go away and return with a baby in that time.
I was not given any support or advice at this stage, something which always seemed very odd.
However after losing my job as an engineer, it was decided that we should move back to the family home in the North East of England.

We moved and went to see the new consultant, but found that the original hospital could not find my notes. After 6 months of waiting I was put through the diagnosis again, because my notes were still lost, but this was done in a far better…

Ipads and dementia

When I was at work I had two computers in my office, one for general work ie reports e mails estimates etc, and another which was linked to all of the boiler rooms in the college and controlled everything, so that I could see what was happening in any boiler room or plant room without actually leaving my chair.

 Then this illness kicked in and I lost control of using a lot of technology, something which terrified me.

I managed to hang on to my computer although found control getting worse as time went by.
I now use as I pad and have been amazed at how life has changed, for me at least.

Everything I want is there within easy access, whether it's my blog, e mails, Facebook, Twitter, and brain training games.

I am in contact with friends without having to think about it too much.

I can use my left hand on the days my right hand has tremors, and it's so much easier to use than a computer, that I look back and wonder how we managed over the years.

As well as that something has rev…