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Showing posts from 2013

Happy New Year to all

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I would just like to wish all of my readers a very Happy and prosperous  New Year.
Its been a very long year, but I have done quite a lot with dementia charities, with media training


 for people with dementia, and also helping with websites and writing blogs for other websites including the Department of Health website for the G8 summit. This also took in media work, something that I have got used to over the years, as I was trained in this by the Alzheimer's Society assisted by a staff member from the BBC. However I no that every media channel wants to do things there own way, so its not what you want to say, but what they can get out of your message I was close to giving up on my blog as I was worried about the governments new guidelines, but I am assured that I am not breaching anyone's confidence so I may well be alright. I am well aware that the American and British Governments are monitoring these blogs, something I fine very wrong, but I g…

Accepting that we have dementia

Accepting and not denying that we have dementia is a major step forward, because it allows us to move forward.

We all look so normal, because unlike a broken leg it cannot be seen or recognised in the community, and therefore many people think that there is nothing wrong with us until perhaps we open our mouths, and it all goes wrong on the bad days.

I have got tired of being told that there does not seem anything wrong on my good days, so much so that I asked if I needed a seat band on my brown with the words dementia patient written on it.

I know that some days I doubt that there is anything wrong myself, then later the wheels come off and I know full well that I have the illness.

But I do feel that we need to raise awareness of this illness more than we are doing, and we need to do it ourselves, and not the professionals or the editorial teams, because its us who know what its like living with the illness and not them.

Getting people with dementia to talk about their illness, and …

Merry Christmas

I would just like to take this opportunity to wish all my friends around the world A very Happy Christmas, and hope next year brings more health and happiness to all.

Please remember those who have dementia

Please remember all who are alone and lonely, without the help and support of friends and family at Christmas, especially those who have dementia, or any other Neurological illness.



We all feel isolated at times, but think what it would be like to have no friends or family to call on.

I have a wonderful wife and family, who give me support when needed, so I am extremely lucky

You can help in many ways,




By visiting for a short while to see if they are alright.



Help with shopping



Taking them to church if they would like to go.



A few moments can make all the difference.

Very Interesting Vicar

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Tis the season to be Purple (and Pink)
02/12/2013

A Newcastle Vicar has had her hair dyed in the church's traditional Advent colours of purple and pink in order to celebrate the pre-Christmas season and raise awareness and funds for an Alzheimer's charity based at her church.



The Revd Juliet Stephenson, 44, became Vicar of Holy Nativity Church, Chapel House in Newcastle's west end on the 26 September this year.



The church hosts the monthly Care ConneXion Café founded by church member Carole Lawson, at which those living with Alzheimer's and their carers can meet for friendship and to share access to a variety of support services and resources.



Juliet Stephenson's Advent hair colour change reflects the traditional three purple candles and one pink in an Advent Wreath, and enables her to blend well with other Advent-themed decorations in Holy Nativity Church during December.



"I'm raising awareness and money for the café and its users, so that in the summer th…

Barnsley dementia centre is officially opened

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Barnsley dementia centre is officially opened
The Buy a Brick for BIADS appeal raised more than £36.000 in eight months
A dementia support centre entirely funded by voluntary donations has been officially opened in Barnsley.
More than £36,000 was raised in eight months by Barnsley Independent Alzheimer's and Dementia Support (BIADS) to fund the centre.



The charity, founded in 2009, offers support and activities for people with dementia and their carers.

The centre, at Joseph Exley House on Dean Street, was opened by Barnsley Council leader Sir Steve Houghton CBE.



The charity launched its Buy a Brick for BIADS appeal in March enabling it to acquire the lease and refurbish the building.



Linda Pattison, chief officer at BIADS, said: "Our dream of opening our own dementia support centre has come true.



"Everyone connected with BIADS is extremely proud of the progress we have made in such a short time."

G8 Summit on Dementia

This is todays news headline, but I hope its not just another Government talking shop, and also hope that they do put extra money into this, rather than keep saying that the money is already in the system and just needs to be spent properly. To me personally Mr Cameron is the wrong person to be doing this, as many don't believe anything he says these days, and I am now one of them  I have always voted for his party until now, but never again, because he has done far too much damage to people like the disabled and poor who now find themselves victims, of his so called bedroom tax, something which is now also hitting people like carers who need a spare bedroom so they can get some well earned rest.   The UK will aim to double its annual funding for dementia research to £132m by 2025, up from the 2015 target of £66m, David Cameron has said.
The prime minister's announcement comes before a dementia summit which is part of Britain's presidency of the G8.

Meanwhile, the Care…

Spelling

I have been criticised for my spelling mistakes in my blogs, and I  can only say that I am sorry for this, but I don't always remember to spell check my posts.



Many of these look fine to me at the time, but its later that I notice mistakes



I must admit that I have many emails from large companies, with horrific spelling mistakes in them, so there is some scope for me, as I have Lewy Body Dementia, but some people still don't like it, which I suppose is fair comment.



I am sorry about this and I will attempt to try to remember in the future.

Not a good week end

Saturday was very hit and miss as far as I was concerned, but I managed to get through it without any mishaps.



Yesterday however was very different as I had problems with my balance all day, and then had problems with this blog later  on as I could not upload some pictures.



But today I am back to normal again or as normal as you can expect with this illness.

The blog is still playing up, but I have asked for some advice.



I also got my new distance glasses today which is marvellous, I just need to get my reading glasses fitted with the prisms and then hopefully that's it.

Animals and Humans

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They say that animals have special bond with humans, and I have enjoyed a lovely bond with our sons dog Skye.



She is a sheep dog belonging to my son Mark, and is always full of endless energy which never seems to stop.



Apart from the exercises Skye never asks for anything else when she stays with us on the odd days during the week, although for some reason she never like me to go to sleep, and if I do she grabs my fingers and shakes them gently, as if to say wake up.



When my son has been down I try to take some photographs, so that I can try to keep my hand in with my camera, at least thats the idea on the good days,



This is a wonderful hobby when your brain works, or works well, but it causes a lot of stress when I forget the settings



Other animals and birds which give so much pleasure are Ducks and Swans at our local park











New drink could reduce chance of developing Alzheimer’s disease

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New drink could reduce chance of developing Alzheimer’s disease
A businessman has launched a soft drink could help to reduce the chances of developing Alzheimer’s disease and dementia


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Richard Baister, creator of the Brainwave drink


The pioneering soft drink – which is a world first – will be available exclusively online from January and is available to pre-order now.



Called Brainwave, it has been developed by County Durham entrepreneur Richard Baister, based on research by a Newcastle University professor which shows a positive relationship between the daily intake of green tea extracts at a certain level and cognitive health.



The drink contains concentrated extracts of various natural ingredients which, when consumed in combination, enables the body to absorb the maximum benefit from the green tea extracts.



Research undertaken by Dr Ed Okello of Newcastle University has proved that regular consumption of this level of green tea alongside the specific acti…

Eyesight

After all of the eye tests I am getting my new distance glasses on Monday, with the prisms fitted, so no more double vision, Its been a long time, but I am pleased that its nearly over.



I just need to go back to get my reading glasses checked again in three weeks than its all over.



They do not know if its all connected to the Lewy Body Dementia or not, but I suppose we will soon find out if it gets worse.

Not a nice day

Its a horrible day with gales lashing the East Coast and what feels like freezing rain falling.

We have just been for a walk with our sons dog, and it was difficult to stay on my feet.

I normally like walking this dog but today is not a  good day for anything.

It sounds like the rail and road networks are being disrupted, due to the winds which are now getting much stronger since we came in.

Lloyds Banking Group get Dementia Friendly

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As someone who has used Lloyds bank at home I can honestly say that the staff at our Bank are wonderful and helpful to me, partly because they now know me and many understand my problems which helps. But they are all undergoing training to become dementia friendly and that means a lot to myself, as a person with Lewy Body Dementia. If I ever go in to the bank on my own, which happens occasionally, I am always asked if I am alright or need help, then they ask how my wife is. Its a very nice touch and always puts me at ease.  Lloyds Banking Group get Dementia Friendly 0Share It would be a lot easier for a loved one suffering from dementia to remain independent for longer if communities and organisations adapted to accommodate the affects it has on a person. Lloyds Banking Group and Alzheimer’s Society today launched a a landmark guide for banks and insurers to help improve the everyday lives of people affected by dementia.
The ‘Dementia-friendly financial services charter’ has been des…

Possible treatments for Parkinsons- Lewy Body Dementia etc

A research team from our Department of Biology and Biochemistry has identified a possible target to reduce the levels of a protein called alpha-synuclein – linked to both Parkinson's disease and dementia with Lewy bodies.

The findings, funded by Alzheimer's Research UK, have been published online this week in the journal Molecular and Cellular Neuroscience.
Dementia with Lewy bodies is a type of dementia thought to affect over 100,000 people in the UK, characterised by symptoms of memory loss, fluctuations in attention and alertness, hallucinations, sleep disturbances and movement problems.
Research has already linked changes in the brain in people with dementia with Lewy bodies to those happening in the brain in Parkinson's disease, in which the principal symptoms relate to movement.
To further investigate a common mechanism between the two diseases, Professor David Brown has been investigating a protein called alpha-synuclein.
Professor Brown said: "We know that alpha-sy…

Words don’t come as easy as they did

A few weeks ago while I was speaking to a large group of people about how my life has changed since getting this illness, and I realised that life is no longer as easy as it used to be.
I had said how my tastes in food have changed to so much that my wife does not understand it
My taste in music has also changed quite a lot, something which always strikes me as very odd, as I was always what could be called pretty conservative in what I ate, and listened to.
But I went on to say how my taste in politics has also changed, and this hit me more than anything else, when I have realised.
I was supposed to say that for some reason I have become vocal, where before I was always quiet.But the shutters came down, my mind went blank, and I lost my place.
When I realised I said the first thing that came to my mind, and that was that I had become very “political” rather than vocal.
This completely threw me in the wrong direction, because I had not meant to say that I had become politically vocal, but…

Hospitals and Stigma

A report written by our dear friend Terry Pratchett.


Tackling the stigma of dementia is a long-sought aim of agencies working to raise awareness and care for people with the disease. A huge amount of work remains if this goal is to be achieved, and hospitals, which are at the very heart of communities, have an important role in raising awareness and encouraging holistic approaches to drive change.



Many dementia patients say that from the moment they are diagnosed, those around them feel somehow rendered incapable. In reference to his own diagnosis with early onset dementia, the author Terry Pratchett summed up this reaction quite simply: "People get embarrassed, lower their voices and get lost for words."



The reasons for such stigma are multiple, but the consequences almost always the same. As those living with dementia struggle to understand what is happening to them, they can become socially isolated from friends and family who are often just as afraid. Stigma is driven b…

Loneliness in Dementia

I have heard that it is quite common for people with dementia to feel lonely, and it’s only recently that I have realised, just how bad it gets
Many don't understand why it is in this day and age, that people feel so lonely but there are many reasons for it, when we look at it.

When we are diagnosed as having dementia, many like myself find that our friends disappear into the woodwork, and don't want to see us again, but this is down to the stigma effect caused by ignorance and lack of education about the illness.

I have also heard many people ask if the illness is contagious, and that makes me angry.

I also feel that when you are diagnosed with an illness like dementia, you are in some cases nervous or terrified of admitting to having it because if the horrible stigma, because it’s like cancer was in the 1960s, where many felt they were being stigmatised and treated like lepers, something I always remember.

The stigma has now gone from cancer but today we see it in Dementia, and i…

New Dementia Centre

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New dementia centre welcomes first patients

Today, Monday, 25 November, sees the opening of a new £10 million state-of-the-art building which will provide in-patient dementia care for the people of Sunderland and South Tyneside.

This new dementia centre at Monkwearmouth Hospital will also work closely with community services including the Memory Protection Services, challenging behaviour and community mental health teams and day hospitals to provide an integrated pathway of care.

The first patients to use the new building were transferred to its two wards, Roker for male patients and Mowbray for female patients, which replace two 12-bed wards currently located at Cherry Knowle Hospital.

Designed by Medical Architecture and built by Laing O’Rourke, the construction also received input from the University of Stirling Dementia Services Development Centre, a world leader on the design of services and environments for people with dementia.

This new building is part of Northu…

Eye Hospital

I went back to the eye hospital yesterday, to have a check up after the prisms had been fitted to my glasses, and it was decided that I need more tests in a few weeks time due to changes.



This is obviously to do with my Lewy Body Dementia, but they need more results before agreeing to the next step



This has been going on now for nearly a year now, and confess that its starting to wear a little thin, so I am hoping that this next visit will be the last.



While I agree that the prisms are helping, its the temporary ones which cause distress at times due to the lines across the galls which are visible during sunny days.



So if these are making a difference, which I am sure they are then perhaps its time for them to agree, that permanent prisms have to be fitted in my glasses


Grounding in Life

I have just bought a copy of a book today,a book which I read quite a lot in my early youth, and looking at it again, I am sure that it played a Major part inshaping and making me who I am today,
The book is Scouting for Boys, by Robert Baden Powell, and I often wonder how many boys grew up with it at their sides as a boy, and then used it in one way or another in life without giving it a second thought.
It’s amazing looking back over the years to when this meant so much, to a time when we were forming a new way of life.
This period of my life was very difficult to come to terms with, but the consultant thinks that this book and its ties to the Scouting movement saved me, and got me going, into a nicer world.
Although that period of stress and torment, will probably stay with me for as long as I am alive
We all shared a common bond, and that was to become better people,sharing everything we had in life, and sharing the experience of growing up with many others, from all walks of life no …

Presentation

The other day I did a follow up presentation on Dementia and Spirituality in Newcastle.



The event was being held in a local church, something I have never done before, and the odd thing which startled me on two occasions was the number of clergy sitting in the pews listening to what was being said.



When my wife and I arrived we were welcomed by the parish priest and his wife, and were shown around the new church buildings, and really made feel like guests of honour, but at the same time it made me feel relaxed, and ready for whatever came.



However during the interval of the event, when I was unsure what the response would be from comments I had passed about Dementia in the Society and the Church, but I was amazed that many of the people said that they welcomed my comments, which had made them realise just how out of touch they were as far as dementia is concerned. Judging by the looks on some faces, not everyone in the room shared their views, but then we can not win them all over i…

Weekend again

Its Friday again, and although I don't work any more, I still look forward to weekends for some odd reason.


Every day is the same really so there is no logical reason why a weekend should be different, apart from the fact that my Son usually comes down on a Saturday with our Grandson Jacob, and we enjoy seeing them.



I have been struggling this week with the dregs of the chest infection, which feels like its on its way out at long last, so I am hoping that things will pick up over the next few days, so that I can get back out with my camera, and take some pictures of the wildlife down at our local riverside park.





Meaningful Dementia Care

Dementia care is led these days by professionals from various backgrounds, all with vastly different ideas, as to what is needed as far as carers and people with dementia are concerned.

Yet I do wonder whether they actually ask those with the illness what they really want, or do they as we all know, just take it for granted that they know best, something that is well wide of the mark

I get tired of hearing these people say, that we need this or that, when in many cases it’s all down to what they want themselves and not people with the illness.

We have to fit into their, one size fits all group, and if we don't then they say we are being stubborn or awkward.

I know that if they bothered to ask us, the people with dementia, they would get a different answer all together.

I do feel that their ideas are being pushed on to us because they cost less, and take up less time

Dementia care these days is big money, but the money does not go into the care or staff training, it goes on the sharehol…