Saturday, 28 September 2013
Friday, 27 September 2013
The news came at Action on Dementia Sunderland’s AGM, which was held at The Place in Sunniside.
The organisation, which runs special memory cafés for the benefit of Alzheimer’s sufferers and their carers, has piloted two programmes in the past year.
One is a hospital visiting service, which sees outreach support workers help patients cope with their dementia.
There is also a home visiting service, where carers are given a break from looking after their loved ones.
It’s believed there are about 3,300 people with dementia in Sunderland, with many of those still yet to be diagnosed.
“I think we have been, given the circumstances, very busy in the past year,” said chairman Ernie Thompson. “We have become a registered charity and been successful despite the economic climate.
“We want to continue both of the pilot schemes which have been very well received, so we are seeking further funding to do this.” Members are hopeful they will scoop money after they entered the Echo’s Do A Lotto Good campaign to win cash from the Big Lottery Fund.
Dr Paul Donaghy, a clinical research associate at Newcastle University, was at the meeting to talk about research into dementia treatments in front of the assembled audience.
Deputy Mayor of Sunderland, Coun Stuart Porthouse, also attended.
He said: “We believe it is very important to help in promoting all the good work carried out by Action on Dementia Sunderland.
“It’s very important knowing that any money donated is spent on the residents of Sunderland.
“Dementia is a disease that affects 820,000 people in the UK.
“Most people with dementia are over 65 and, therefore, affects many family members who become carers.
“Dementia is very often a lengthy journey, often 15 years or more, and the more we can contribute to this very worthy charity, the more help can be done in the community.”
Well done to Ernie and his team, they have done so well since starting up and I am sure they will achieve their aim in the future
Tuesday, 24 September 2013
Its nearly 11 months ago since I lost the old blog on Armistice day 2012, our wedding anniversary, when I somehow pressed the wrong button and lost everything
I realised that I had two chances, either let it all go or start again with a new blog,
Luckily for me I had done all of the pages on Windows Documents so they were all saved on my computer, and I have not looked back since. '
The odd thing was that all of the old page readers came back very soon after stating the new blog and I have far out done the old blog with readers and page views.
So its been an amazing day and could not have done this with out all over the regular readers from around the world. Its strange but I somehow feel that its all friends reading this blog now, because they all come back everyday.
Many thanks to you all for giving me a reason to get up each morning and do something tangible and certainly not expected. It would have been too easy to stop and give in to this illness but you all kept me going.
Monday, 23 September 2013
The organisation aims to set up, in a variety of meeting venues across Doncaster, Peer Support Groups for people with dementia and their carers.
Sue Ryder will be working with local shops, businesses, clubs, groups and networks to increase the awareness of dementia and the role that everyone can play in helping to support the local community and individuals by providing information and guidance.
There is also a dementia befriending scheme that compliments this project and happy to discuss this.
The team will be on hand to identify aims, answer any questions and to discuss how you can get involved.
The meeting will take place on Wednesday 2nd October between 10am and 2pm at Town Fields Pavilion.
For any further information please contact Marilyn Cockett or Debra Blades on 01302 380077.
Well done this is brillant to see, and I can only hope that more support groups get set up in the future, so that people with the illness don't feel so isolated, because they don't know who to talk to and ask questions
Sunday, 22 September 2013
I also had problems at the time finding the right words, which did not help
Spirituality means different things to different people, but it seems that there is a lot of deep seated upset about this subject as many people think its about religion and nothing else.
I suppose to me spirituality is about religion, but as a religious person, I did not wish to push my views onto anyone else as they are personal
However after a lot of searching on the internet, followed by a lot of thinking over two days I came up with my idea which I used, and it was a big success, So much so that I was asked if people and institutions could use it for teaching.
I had never considered this, and it came as a surprise, but it was a nice surprise and an honour, being able to help.
As I said before many people had problems with the religious side of the topic, but I feel that many of these problems go back to the days when a priest would spend time doing pastoral things in his or her parish, like going to visit the sick in their homes or in hospitals.
This does not happen these days, for various reasons, and its a topic which really annoys me at times, and I guess that it's this which annoys other people, so they will not discuss religious things with anyone.
However when we look at it from a different angle, it's about what we enjoyed doing in life, and what want from life.
The things which mean so much to us, and that is what we want to carry on with for as long as we can.
To me looking back its a form of life story, or the story about the person with the illness, their like and dislikes along with the things they may well hate, its all part of lifes format, and part of our individual spirituality.
As a person who has worked on Life Story work with the Life Story Network in the UK, I soon got into this talk, and encouraged others to het involved, as it helps us to learn so much about our loved ones, and many things we knew little or nothing about sometimes come to light, and we get a good picture of who the person is and where they came from.
Of course this can also bring up things which the person does not want in the public domain, this has to be considered before anything else.
But all in all its this persons life story, and its their for their loved ones and families to read in the future as well as when they are being cared for
I have learnt a lot about this now, and after the talk which was also a huge success, I am starting to look further into the subject on good days.
I confess that I got emails from all over the world which was amazing, so many that I could not answer them all, so it proves that this subject is something dear to many hearts, and I was pleased and proud of being asked to do it in the first place.
Friday, 20 September 2013
So all being well its all sorted and back to normal.
The computer is like my right arm and when it does not work, I am in trouble, because I do so much on it to keep my brain active.
I was trying to remove a piece of software that was giving me grief, but that has gone wrong and the computer is having problems starting up again. So its back to the stop gap lap top which is saving the day again.
I think is getting close to the time when I have to stop, trying to do things on the computer like this, because my brain just is not working as it should, and that causes more problems than I set out with.
This was just to get rid of some anti virus software which was causing more problems than it needed, still if I cannot get it started I will have to take it to the repair shop next week.
Thursday, 19 September 2013
When I was working the Bursar at my College used to say that she was amazed, when things went totally wrong, because I seemed to go into overdrive and thrived on stressful times. In some cases she would say that I was unstoppable, because once I had got the bit between the teeth, I would work all hours to get everything back to normal, even working through the night to achieve it.
I confess that I was shocked to hear that ,because as a University College Engineer, I was responsible for all of the College Buildings, the services, including all of the Electrical, Gas Water, Ventilation and Air conditioning systems, along with all of the maintenance team and contractors, and was on call 24 hours a day.
I know that times could be hard, especially when you were working through the night, and then up again at 6am to start on the normal day job, but it was my life and in some weird way I loved it.
I suppose looking back at old diaries to remember all of this, I just went into overdrive and totally ignored the College High Officials, because I knew what was needed better than anyone else, and was allowed to get on with it. Although I gathered from notes that I never took any prisoners, so if any individual like an academic poked their noses into something they nothing about, they got a shock.
The odd thing was that I was protected by the Bursar, Treasurer etc, because I was respected and kept my head down
Yes it was a stressful job but I loved it, the sad thing is that I don't remember a lot about it all now, its a bit like a faded dream. I suppose its like last years flood at home. That is a forgotten part of my life, I remember odd bits and that is the lot, so where my wife lives in fear of another flood, I can't really help her. I get occasional glimpses of the flood but nothing concrete, I don't know if that's good or bad.
However these days, I have forgotten how to do the jobs that I used to do confidently doing my work,
and many are so dangerous that I would not even go there.
This includes all of my electrical training, which is a thing from the past, and even the electrical examination papers that I have seen look like a foreign language, and unreadable. I have managed to fit one electrical plug since leaving work, and my son had to check it as I was unsure as to whether it was done properly.
I no longer take stress very easy these days, and that is very hard to cope with. I find that any stress sees me leaving the room, to find somewhere quiet.
Yes I now get stressed and sometimes very agitated, so I have tried to steer clear of anything which sets me off. However finding the right words and answers at times can cause this, so I have to try to work things out in my brain before opening my mouth. Otherwise the wrong words come out, or the right words in the wrong order, leaving me feeling very annoyed with myself.
I know that its all to do with the brain, but it does not help some days.
I don't know if this is a major part of my illness these days, but I confess that there are days when this gets me down.
I suppose in this day and age even the television is stressful as programmes like the BBC news are very biased and I find that so sad. I don't like to hear someone telling me what is right or wrong on Television, because I have a better idea than some of these presenters, I just want the news as it is without some political biased on it. So I end up reading the news on the internet, where I can make my own mind up.
I was never political or had any views on politics, but now like many who have this illness, I seem to have gone the other direction, which at times is confusing.
Many people who have this illness end up with some form of depression too, but although I get stressed I don't think I am depressed, or depressed as I know it.
I just want the stress to go away, but I suppose most of this is down to the lose of all my training and hobbies, the things I loved outside family life.
Tuesday, 17 September 2013
I have been a member of DeNDRoNs, Patient Public Involvement panel for a few years and can honestly say that I have enjoyed it. As well as being involved in research we also spend time looking at future research projects.
I myself got involved in a research program recently, and was amazed and pleased at the results, because in the past, when I had my eyes tested I was simply fobbed off, by being told that there was nothing obvious so it had to be the brain,
This project was about eyesight problems in people with dementia, and this is now something which is nearing completion as far as I am concerned.
A problem was found and I am hopefully going to benefit from the results very soon.
This scheme was run by DeNDRoN, The Dementias and Neurodegenerative Diseases Research Network, which is UK based although my own research was done by the North East Regional network.
DeNDRoN have regional newsletter which can be read at the following address.
Please consider the fact that this research is very important to all, as you are helping others who follow us in the future.
Have a look at what we are doing and if you are interested, and live near one of our centres, then why not register with us.
Its not all work its very interesting and you meet new friends
If you are thinking about it, THEN GO FOR IT
DeNDRoN NEEDS YOU
Friday, 13 September 2013
I could reach out and help others whether they had dementia, were carers, or family members or friends.
This is an independent and as far as I know its an International website, where people can go for impartial advice about an illness, or problem at work etc, and no matter what the problem is there is always someone there to support you day or night, although I might add that I am not.
The main problem is that although there are around 12 different types of dementia, there are over 120 variations of the illness and each person goes through the illness in vastly different ways with different signs and symptoms, so we are all individual in our own way.
Many people think that because they know one person with dementia, that they know everything there is to know about the illness, but this is far from the truth.
People in this case will not go to charities where someone may know them, so they go online and ask the questions. They are usually pointed towards the correct charity, in the end.
I will point out that no one knows who I am, or anything else, and contacts are not allowed, just in case something goes wrong, or we get too involved, and I only give advice after thinking it through carefully
I will point out that I only do this on the days when I can think slowly and carefully, and nearly everyone in the end goes to the correct place whether it is there doctors, or a charity where they can get all of the help and support they really want, and once that happens I have achieved my goal.
I have had experience of being in a post like this for a leading charity, and really enjoyed doing it.
I then had an amazing day walking along the banks of the River Tyne, a place where I worked for a few years in the 1960s, yet all of the places in my memories have gone.
The factory I worked in, the wharfs on the quay side and the flour mills have all since gone, one of the Flour mills is now that Baltic Art Gallery, a big change and even the Tyne Tees Television Studios had disappeared, so it seemed hard to think it was still the same place.
Years ago I would walk along the city road towards Byker, and then on to the factory overlooking the river, a place which held many happy memories, where we would spend time spotting the different ships of the line which were visiting the Tyne to offload their goods from around the world.
Yet all of this was gone but I looked back, and saw what was left in places, and how it had changed in others. Places where wharfs had been where now bars or Restaurants or in some places office blocks.
There are ok cause many more bridges than there were in those days, and I was going to attempt to see them all knowing full well that I would pay for this the next day.
When I worked there the wharfs were very busy places and it looked like an ants nest with all of the dock workers, now its all gone.
But all did not go as expected, because my brother met up with me after Lunch and we had a long drive around the other areas of the Tyne and Wear where everything had changed since the 1960s
This had been an added bonus as we had a long chat, and discussed how things were back in those days from what I remembered to what there was now.
We saw the places where all of the big shipyards had been, now all gone, and the only place which seemed to be busy was Tyne Dock and the Sea Terminal where the large ferries ply their trade to Amsterdam, and other European countries.
In many ways it was a time of reflection, as its not often that we have enough time to go over things like this, and to be honest its not everyday that I feel up to doing it, but my brain was in overdrive so I went with it, and I really enjoyed the day.
The high point was seeing the Millenium Bridge open at lunchtime something I have seen on television but never in reality.
My brother had been a Chaplin to the Swan Hunters Ship Yards, so he was able to fill in the gaps where I had forgotten things, so all in all in was a day to remember.
The Bridge Closed for River traffic
Wednesday, 11 September 2013
When I look at all of this I am not sure whether stigma is the right word, I rather think that it should be more like discriminated against, just like third class citizens.
When we consider that 40years ago cancer was still a dirty word which was stigmatised, and people who had it were treated as if they had a dirty sexual disease, something we know it was not, and thankfully this has now changed.
When I look back, I can remember the stories of people with dementia being locked up in mental hospitals etc., because they knew very little about the illness and thought the wrong things. These poor people who have this horrendous illness are the victims and are treated like old day lepers by Society.
Many people I have spoken to have this weird assumption that dementia is contagious, or easy to catch, when we know that it’s not. There are many misconceptions about dementia, as many think that you become illiterate or irresponsible once you are diagnosed.
Even now we have nieghbour’s, who if they see my wife and I at the shops, will often ask her “how I am” when I am stood there, thinking hello I am here and not a ghost. Needless to say I steer clear of people like this as it hurts when this type of thing happens
Someone I class as a dear friend in New Zealand, was diagnosed in 1993 and was given more or less 5 years, yet she is still going and is still travelling the world spreading the word and raising awareness, so that must prove something even though her x-rays and scans prove otherwise, as they show up, what is left of the deteriorated brain, yet she is going still and god willing she will last a lot longer.
So with luck all of these websites will change for the best thereby helping us
We also need to get better services in England so that we get the same treatment and services in all parts of the country and not as we see it today where it’s a post code lottery.
We are left to support from charities, who have been short changed the by government as well and now, and find it increasingly difficult to find funds to keep going.
We should if we can go out and speak to those who are young and ready to take this illness on board, whether it is schools, although teachers refuse to accept any one with the illness to talk to their pupils
I have offered and have spoken to many groups nationwide, and they enjoyed to talks and presentations given because they were genuine.
Let us all spread the word and raise awareness of this illness and remove the stigma, so that it becomes a nasty word from the past and is no longer used
Monday, 9 September 2013
So we have booked up and are preparing for the holiday of a life time with a visit to Turkey early next month. This is a place we have always wanted to go to as it has so much history, and its where the East meets the West so to speak.
We both love anything to do with history rather than being beach dwellers, something I cannot do anywhere, so its something to look forward to all being well.
I thought that the insurance company would stop me going with my dementia, but they seem happy to allow me to go, so now its all down to planning what we want to see while we are there.
My wife is a bit fussy with her food but these days I will eat anything that's going including spicy foods, so that again will be interesting, as I don't eat English food while we away, if I can help it at all.
It would be interesting to see how the Turkish people see dementia while we are there, but there again it depends on whether we see anything which points us in the right direction.
Friday, 6 September 2013
These days it takes a lot to concentrate on everything I do, so it is hard, when something or someone breaks this concentration, and once it has been broken it takes a long time to start all over again.
I personally find this sort of thing to be very frustrating and annoying, because it is usually done by someone who should know better.
I can accept that some people may forget at times that we have these problems, but there are times when it does not make it any easier, and its very difficult to try to keep quiet, let alone tell them to disappear and leave you alone.
Children seem to sense that you are concentrating and tend to steer clear, where adults jump straight in with both feet, and give you a strange look when you get annoyed, because you have forgotten what you were writing or trying to say.
It never bothered me when this happened before but I suppose its getting harder and harder to concentrate these days, and even harder to remember what I am trying to write or say.
Perhaps I need a big sign on my back or above me saying,
DO NOT DISTURB I AM THINKING.
Then I guess others would get upset and think I am simply being rude
Thursday, 5 September 2013
Since then it has really taken off and now has more sections to cover most aspects of the illness.
As well as the serious side there are also sections where people can learn about the news from the Alzheimer’s Society, or they can go to the tea room and do things like telling funny stories or tell jokes.
We may have this horrible illness but many of us still have a sense of humour, and that is good.
Anyone can become a member of talking point, no matter where they live in the world simply by registering, and all are made welcome.
So if you need somewhere to go and discuss a certain problem concerning dementia, please go to talking point as it is in operation 24/7 and no matter what time you log in, you will find a friendly person at the end.
I was a volunteer moderator myself for a short period, but gave up as I was struggling with eyesight problems, and did not want to make a mistake by giving the wrong advice.
The link to this website is at the bottom of the page
- I have dementia
- I have a partner with dementia
- I care for a person with dementia
- Younger people with dementia and their carers
- Lesbian and gay people with dementia and their carers
- Memory concerns and seeking a diagnosis
- Recently diagnosed with dementia
- Mid-stages of dementia: support and care
- Later stages of dementia and end of life
- After dementia — dealing with loss
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