Odd day

Its an odd day I was working on my computer and lost the mouse.



I thought that it had fallen on the floor, so I looked under the desk and even started to move the computer away from the wall, and then after getting frustrated I saw it, right in front of my nose



I have been struggling with my eyes today anyway, and kept putting the wrong glasses on, so perhaps its a day to sit back and ignore it in the hope it all goes away



I was going to do many things today, but that's it, leave it all till later or tomorrow



Joys of dementia

South Tees Dementia Champions Celebration

 I was invited to speak at the Dementia Champions event at the James Cooke Hospital in Middlesbrough on South Tees on Friday, and was truly amazed at how much they have done to become truly dementia friendly.



There were a lot of brilliant speakers, from all parts of the Country, and many of the trainers and specialists in the hospital, all who seem to have a very keen interest in changing and raising the standards of care received by people with dementia when they enter this hospital.



I was invited to go to talk about why I thought it was important for me to do my blog on living with Lewy Body Dementia, and what it achieves when you have any form of dementia or Neurological illness.



There were many other speakers who did a wonderful job, helping change conditions for people who have dementia when they need hospital treatment etc



During the day we saw the presentation of certificates to staff members, who have completed City and Guilds course on Dementia care, and it was truly amazing to hear their stories



What is more they admitted that through mistakes, they had learnt so much from the course and hearing that made me realise that, yes we all make mistakes, but it takes a very special person to admit it openly, and then move on to make things better for others.  These people really had learnt from their mistakes which are very easy to make when you are learning about this difficult illness
  
Well done ladies



Another speaker was Tommy Whitelaw who cared for his Mum


This was a hard story to listen to, but Tommy has done so much to raise awareness, not just in Scotland but all round the UK



I found it very hard listening to his story, of his and his MUM Joans problems, and confess that I was in tears, but I was not alone in this.



His story highlighted many of the problems we find these days when trying to get help, but it was put over in such a way that it was vastly different to the many carers stories I have heard in the past.

This was a very emotional and passionate story which hit hard, and I did not see anyone from where I was sat near the back of the lecture theatre who did not have tears in their eyes.



If anyone can raise awareness of this illness dementia he can do it. He is a true ambassador to this illness and all carers



Where we were doing presentations, there was also a twitter board near to the side of the lectern, and it was interesting seeing all of the interest from around the UK. It was also hard to watch what you were doing because it was compulsory to watch twitter so you could see what they were saying.


I confess I could not do this because I would have totally lost my place



But it was like a moving wall of fame



Thank you and very well done, to all of the organisors at the James Cook Hospital for a marvelous and inspiring day



It was also nice to meet up with frinds whom I had met on Facebook and Twitter, but never in person until this event.


Kim Pennock Tommy Whitelaw

 Thank you so much I really enjoyed myself and felt relaxed in a Hospital for the first time

People with dementia and Research Projects

The last 10 years of my life are a complete blur, which is horrifying, because vast chunks are missing, gone forever.



I have tried to recreate this page from diaries and notes on my blog, as most of the information is no longer in my memory



I was diagnosed as having early onset Lewy Body Dementia at the age of 56, something which came as quite a shock, both to myself and my wife and family



I had been a University College Engineer for 28 years, working on Electrical equipment, while also doing two large budgets, running the health and safety side of the department, along with all maintenance estimates



When this illness started I thought I was simply going mad, because nothing made sense at all.

I lost the ability to understand which electrical cables were which, and the colours made no sense.



This was horrifying, and then I lost the ability to understand my estimates.



I tried in desperation to go over my last electrical examination papers, but it seemed as if it was all in a foreign language and simply did not make any sense at all. This let me at times to sit and cry my eyes out, simply because it made no sense at all.



Our local GP was happy to say that I was simply depressed, something that I knew was wrong, and this was proved later by the University medical department



At this time I don't think I was the easiest person to work with or for, and people had complained that I was becoming moody, something which the doctor later explained.



She said that as I was losing control, and unable to fathom my life out, others were beginning to think that I was taking it out on them



My family life was also in a mess as my wife and the two Children could not understand what was happening. I was not their Dad or Husband, no longer the person they had lived with for so long



Then the diagnosis came and I lost my job, and that was the end of something I had enjoyed doing for 28 years.



After my diagnosis I was a volunteer with the Alzheimer's Society in County Durham, and from here I became a media spokesman for them in the Local and National Press.



I don't really remember how it happened as it’s all a blur, but I believe that I was invited to speak at a DeNDRoN conference in Newcastle, and later on we met Terry McGrath, and then my wife and I then got involved as PPI members.



After this I decided that I was going to get involved in research if I could, so that I could help those who follow in the future



I am still struggling and feel lost at times, when I don't understand what I am reading, or don't understand the words on bad days. Even worse now I am struggling to cope with the computer.

I can no longer write properly with a pen, so the computer is handy for writing things like my blog and presentations.



But I am also now struggling with my grammar and spelling, and that is awful to me as I was always very proud of being able to spell correctly and very proud of my standard of grammar.

If I lose this I will just have to give up the blog and other things I enjoy so much, but I am desperate to carry on doing something, whether that is giving more presentations written by my wife and I.

I simply don't know.



I admit that I enjoy this, and it would be sad if it stopped, as I always hoped to give a presentation abroad before I stopped all together, but I now think this is impossible because of the cost of travel insurance, but it's not the end of the world.



But that's life and I now have to accept whatever comes my way whether I like it or not



The rest as they say is history, although it does not feel like my own.



However being part of the DeNDRoN Patient Public Involvement scheme, I do feel the people with dementia, should try to get involved with research projects. It may not be doing trials in medication etc., but can involve looking at research papers to see if the project is worth doing. In this we work with professionals who assist us and explain any problems we may have



There is a need for everyone who has any form of dementia, and who can so, to get involved in research. I say this because without research we will never find the answers to all of the problems we see in Dementia today.



We cannot hope to get good quality research, unless we the people with the illness help, it may well not help us in the long run, but it will help others who follow us in the future and that is very important



We need to explain the problems we struggle with on a daily basis, so that these people can know what to look for.



By helping the researchers we are helping ourselves, and gaining a sense of achievement in doing this

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.



There are many research projects into Neurological illness and most are 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.



www.dendron.nihr.ac.uk.northeast



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.



It’s not all work it’s very interesting and you meet new friends





If you are thinking about it, THEN GO FOR IT



DeNDRoN NEEDS YOU

 

Corbridge becoming Dementia Friendly

Today I was invited to go to Corbridge, where they were showing the rest of the North East how to become Dementia Friendly. Before this I have never been to Corbridge, but I left feeling that it was somewhere, I have totally missed, and have decided that I have to return to see more of the town. It a beautiful little Tyne valley town, which I found to be friendly, and was staggered by the number of shops etc which were displaying the Dementia Friendly Badge in their windows Todays event which was to broadcast it on ITV Television was the brainchild of Mr Melvyn Stone a Corbridge Parish Councillor, someone who has worked tirelessly to promote the Town as being Dementia Friendly. It was obvious that quite a lot of very hard work had been put into this project, but it seems that they have certainly put Dementia on the map, which is brilliant I spoke to two people in one shop who were really dedicated, to this project, and if the other shops were the same it will be amazing, because they seem to have the right attitude, where dementia is concerned Its places like Corbridge where dementia may be more obvious that anywhere else, because it is small and I would guess that most people are well known, so if anyone did have dementia, other people  would know and do their best to help when needed This would not work as well in large towns or cities, but that does not mean that they should not at least try. Also in attendance were Mr Rob Stewart, the Alzheimers Societies Communications and Media officer, and Amy Syron- Mallenby who is the Business Development Officer in the North East Region  The Reporter was Helen Ford of ITV Tyne Tees, who is a brilliant reporter, who is dedicated and spends time helping those involved to feel at ease and comfortable. Tyne Tees Television have done quite a lot of dementia projects, and each time I have found them to be very understanding of Dementia, while helping us to promote the illness, very commendable of all involved  My only hope now is that other North East towns will follow suite, and become Dementia Friendly, so that everyone who has dementia will find their communities as friendly as I did at Corbridge  Thank you for all of your support and kindness today                                                                    The Market Place Becoming 'dementia friendly': one community's journey so far by Helen Ford- last updated Mon 24 Mar 2014 Health Dementia Northumberland Corbridge is aiming to become 'dementia friendly' Photo: ITV News Tyne Tees Nestling in the Tyne Valley, Corbridge has long been known as a place to visit and to shop. Now, it has another aim: to become one of the country's first 'dementia friendly' communities. The scheme is co-ordinated by the charity, the Alzheimer's Society. It wants to create a network of towns, cities and villages where people with dementia can feel safe and supported. One of the first priorities in Corbridge has been to provide training for traders, giving them guidance in assisting someone with dementia. Joyce Anderson, who runs a jewellery and clothes shop, is among those to receive the informal training. She says the aim is to treat all customers with dignity and respect. "One of the common things that happens is that the person with dementia might get confused about the money that they've got, or their card or their pin number. It's making sure that we say things like 'oh I forgot my pin number last week and I put my card in the wrong way round too' and perhaps just a touch on the arm or a bit of comforting reassurance and giving people time." – Joyce Anderson, Corbridge Traders' Association Chairman An estimated 800,000 people in England, Wales and Northern Ireland are living with dementia. The brain condition can lead to memory loss and can also affect thinking, problem solving and language. The Alzheimer's Society is concerned that many people with dementia become isolated. "When people receive a diagnosis it can knock their confidence in terms of them still making use of facilities in their communities. We really want to try and avoid that and make communities more inclusive for people with dementia." – Amy Syron-Mallenby, Alzheimer's Society Ken Clasper has lived with dementia for many years and now helps to raise awareness of its effects. He says shopping can be a daunting experience. "Your brain is running to try and work out what you want and it's easier if you've got signposts pointing you in the right direction so you don't have to panic. Sadly in a lot of shops people don't understand dementia and you're treated with the old stigma: is it contagious?" – Ken Clasper While Corbridge is not alone in working towards dementia friendly status, it is seen as a flagship for the countrywide project. As well as helping people while shopping, there are plans for an assisted walking group as well as 'dementia friendly taxis', to cut out the worry for people when they order a lift. Watch my report on Corbridge's progress so far: Today I found a newspaper article which explains what they have done and are doing, and this explains just how far they have gone, and I feel very privileged to have been involved today http://www.hexham-courant.co.uk/ CORBRIDGE is on course to become Northumberland’s first dementia-friendly community as part of a nationwide initiative being rolled out by the Alzheimer’s Society. Focusing on improving the inclusion and quality of life of people with dementia, the scheme requires the participation of local residents, traders and key public figures, such as police officers and bus drivers. Crucially, it means people affected by the condition are not afraid to seek help from members of their own community. They can go about their daily business, including tasks such as shopping, banking and using public transport, knowing that if they become forgetful and confused, the people around them will be supportive and understanding. With around 4,690 people currently living with dementia in the county, a figure expected to rise to around 6,250 by 2021, the project’s ultimate aim is to raise awareness and increase understanding of the illness. Amy Syron-Mallenby, The Alzheimer’s Society business development officer for Northumberland, said: “A dementia-friendly community is a city, town or village where people with dementia are understood, respected, supported, and confident they can contribute to community life. “There are simple steps communities can take towards becoming dementia-friendly, as well as launching the new symbol that communities can use to show they are committed to making changes. “The steps range from challenging stigma to including people with dementia in local life and highlighting the importance of accessible transport and businesses that are respectful and responsive.” Elsewhere in Northumberland, support is also being harnessed to help Hexham and Berwick become designated dementia-friendly communities. In Corbridge, the project has been driven by parish councillor Melvyn Stone, who has already undergone training with the charity to become a dementia friend. These are volunteers who are prepared to turn their understanding of dementia into practical action. Coun. Stone explained: “In Corbridge, we are already doing a number of things as a village which ensure dementia sufferers are firmly part of the community. “We have a drop-in centre, the Florence Hope activity club, which takes place in the parish hall twice a week. “We also now have a weekly walking group with between nine to 12 trained walk leaders we can call upon to lead walks in the local area suitable for people with dementia. “We adapt them to suit the person’s physical fitness and it means they can be accompanied by their carers out in the fresh air, or their carer, particularly if it’s a husband or wife, can go into the village and have a coffee or enjoy a bit of a break.” The assisted walking group was developed from a core of interested volunteers who originally met through the West Northumberland Health Walks programme, run by North Country Leisure. They have since won £2,000 of grant funding in their own right and plan to get 2014’s walking programme underway in April. “I’ve also had a meeting with at least nine of the village’s traders who all registered their interest in supporting the initiative and have since undergone training,” said Coun. Stone. The next step for the traders is to sign up to displaying a dementia-friendly logo within their premises to provide an extra level of reassurance that they are on board. It is also hoped a music workshop can be established where people of all ages and abilities can get together on a regular basis to enjoy their chosen instrument. Coun. Stone said: “It’s been inspired by one of the village’s residents who plays the recorder particularly well and came to me, as chairman of the parish hall management committee, to see if we could set something up.” Corbridge Women’s Institute has offered to support the venture by providing St Andrew’s church cottage in the village as a base for the gathering. “I don’t have anyone in my family that has suffered from dementia or any particular personal story,” said Coun. Stone. “But I feel lucky enough to live in one of the nicest and friendliest towns in the country, among people who are very proactive and willing to do their bit. “Corbridge is a lovely, friendly, close-knit community so our village is the ideal place to be a shining beacon for dementia-friendly communities, so people with dementia can enjoy their surroundings for as long as possible.” After visiting the Chrysalis at Tynedale club for people with dementia, which operates from Hexham’s Torch Centre, Coun. Stone was struck by how many of the regular attenders were from Corbridge. “It made me realise that this could happen to any one of us at any time,” he added. “It is more common in people over 65, but I’ve learned through my training that there are more than 400 different types of dementia and it’s such a complex condition. “It’s happening to more and more people in front of our eyes and it’s important that we address it and do everything we can to help those suffering from it. “I suppose I’m interested in dementia because so many people are not interested, but I get a feeling that people in Corbridge are ready to change things for the better. “Because of all the criteria we already meet and the steps we are undertaking, Corbridge qualified in just 48 hours to begin working to become a dementia-friendly village.” Melvyn is preparing to embark on more training which will allow him to become a designated dementia friends champion, enabling him to deliver information sessions and training to other local volunteers. Last September, The Alzheimer’s Society launched a report Building Dementia-friendly Communities: a priority for everyone, which revealed less than half of people living with dementia feel a part of their community. An economic analysis commissioned by the charity shows that building a network of dementia-friendly communities could save £11,000 per person, per year by helping people with dementia to remain independent and stay out of care for longer. Amy, who has been working alongside Coun. Stone, said: “To create a dementia-friendly community we need to bring together every part of the Corbridge community from health services, social care, transport, businesses, charities and voluntary groups, emergency services and local people. “Thanks to Melvyn we are heading in the right direction.” A short History of Corbridge Corbridge is a jewel in the crown of Northumberland. Lying just off the A69, about 18 miles west of Newcastle-upon-Tyne, it grew from the Roman town of CORSTOPITUM, a supply town for the troops on Hadrian's Wall. From the beginning Corstopitum provided much of the building stones used in the construction of many of the village buildings, including the church, Vicar's Pele and nearby castles.
		In the thirteenth century Corbridge was second only to Newcastle in wealth and its citizens were heavily taxed to help pay for Edward 1's Scottish wars and its mediaeval street plan is much the same today. The Saxon church however has trebled in size by the addition of aisles, transepts and chancel to the inner Saxon tower and naïve whilst The Vicar's Pele illustrates the fierceness of Border warfare which burnt Corbridge to the ground several times. The bridge at Corbridge is the oldest of the mediaeval bridges which became derelict by the 17th century, and was finally replaced in 1674. As far back as 1827 Corbridge was a place renowned for its small shops and several of the decorated fronts still survive. Today Corbridge is still known for its quaintness and unique boutique shops and is an ideal base to explore the beauty of Northumberland.
On arrival pick up a copy of the Tynedale Visitor magazine from the Tourist Information Centre in Hill Street or the newsagents - it is jammed packed with local events from the Hexham Races to the Border Reivers!

 

Diagnosis of Dementia

When you go through the diagnosis procedure for dementia,  it can be the most distressing thing you may ever experience,  depending on the consultant.

I was diagnosed twice, but the first was the worst thing I could ever imagine, as the consultant did not want to be there at all.

I was using a Dictaphone at the time so that I could remember what was being said, but he kept forgetting to arrange scans and tests, and would get, annoyed when I returned because the results were not there.

This had been set up by my employers the University, and my wife was only allowed in at certain times as it was classed as confidential, and this made matters much worse for me, as I did not have much support.

As I was working at the University at the time, and the doctors got so annoyed that they demanded I had a new consultant, after which things got slightly better.

Eventually this lead to my diagnosis of Lewy Body Dementia, although we got no support and I was not offered medication.

I was told to come back in 9 months, and as my dear wife has said on many occasions, a lady could go away and return with  a baby?.  "Not for me"

However this process was also made worse by a clinical psychologist, who said that I was just lazy and did not even try to do the tests properly, and I left at the end of a long 6 hour session in tears.

 I had gone from being an engineer doing electrical work along with two large budgets, to someone who was counting on my fingers, and to this day my mental arithmetic is rubbish and embarrassing,  yet he could not see that I was struggling.

I think my wife was close to thumping this man, but she did not.

After this I lost my job as an engineer,

A few days later my mother died, and it was decided by the family that we should move back to the family home in the North East of England.

We brought hospital and doctors letters with us explaining the whole process I had gone through, hoping that would be the end of the diagnosis experience, but we then heard that the original hospital had lost my notes.

After waiting 6 months I was told to my horror, that I would have to go through the diagnosis procedure all over again. 

However the new consultant was a lady, and that changed things completely, as the diagnosis was totally different and dementia friendly experience. A better experience all round if I dare call it that.

Sadly this consultant retired to go and climb the Himalayan mountains, so I never saw her again. 

So this whole process can be distressing for those going through it.



Many people still go through life having their diagnosis questioned by other professionals, who may know something about dementia, but do they in all reality know all there is to know about each type.


As well as this we all find that we lose friends, many of whom think that the illness is contagious, or they simply don't want anyone with that illness in their company.

Yes I can be unpredictable, simply because I struggle to express myself at times and panic

Either the wrong words come out, or I get agitated trying to explain myself  on occasion s,  but that's this horrible illness.

When I am asked to speak at functions, I spend so much time in planning what I am going to say, so  that I feel more in control

Yet many so called experts in dementia charities, think we can turn up and give a talk on the spur of the moment, so do they really understand this illness themselves.

However I enjoy my life and have enjoyed giving presentations around the UK, something which has given me a good reason to fight the illness, and long may it last.

Because others need to know what life is like when we have dementia, and if giving these talks helps them to understand dementia, then we must carry on doing it as long as we can.

Dementia Friendly Communities

Next Monday I am going to the Tyneside town of Corbridge,  where they are going to Dementia Friendly.

To me it's a real honour to be asked to attend this event, and hopefully after Monday other North East Towns will follow.

--------------------------------------------------------------------------------------------------------------------- 

We need to make all of the UK, Dementia Friendly, a place where everyone living with any form of Dementia or Neurological Illness can live the lives they require, and indeed deserve, rather than the type of country, where they are told what they can and cannot do.



In the past people with dementia were kept away from the public, but now we see those in the early to mid-stages regularly on the streets, and can sometimes be seen campaigning, for better conditions for others less fortunate than us.



With the right help they can all go on to achieve better things, as it has been proved that people can live well with dementia, if they are diagnosed early enough, given the correct medication and support they need.



However to do this we need to totally change people’s attitudes towards dementia, and in the process remove the horrible stigma which still exists with this illness today.



A stigma we saw in the 1960s when Cancer was mentioned in the neighbourhood, and in many cases was thought of as a dirty word, now however, that has gone and we see the stigma in dementia.



To do this we need to re-educate everyone, and tell them what dementia is, and remove the myths that we see and hear, when we are giving talks etc.

We must also encourage those with early onset dementia, to go out into the community where they will hopefully get support and guidance for the future, to enable them to live an independent and active life as a real part of the community.



We must also start to re-educate people about this illness, from raising awareness of our symptoms and problems, to explaining how others can help us



Many young people are starting to recognise that their Grandparents are ill, and they want to know how they can help, so we should start with these young people and then go into places like schools, shops, banks, and other public places, where people with dementia would like to go, but in many cases they are frightened.



It’s well known that social media can play a major part in raising awareness, as many youngsters use places like Face Book and Twitter.



On these there are many sites where dementia is openly discussed and any questions can be asked.



The task of creating a dementia friendly community has been a long time in coming, but over the last two or three years, it has taken a big step forward and people are starting to listen and take interest, something which we dared not even consider before.



However dementia friendly communities can only exist where there is a willingness to share information between the people, the policy makers, media and business.



At the heart of all raising awareness campaigning, there must be people with first-hand experience of Dementia whether they are living with it, caring for someone with it, or have done so in the past



As one person put it recently, you cannot tell people what to do or say, unless you have the illness, because it’s only when you have dementia that you really understand what it’s like to live with it



These people are the pioneers, who can lead the way in helping the whole country feel as passionate about dementia care as we done



As a well-known phrase goes, from small acorns grow big trees



We must remember that there is more than one type of dementia, and no two people have the same symptoms and problems



 It upsets some people with dementia, when they hear someone say, that all people with dementia are the same. In fact there are well over 120 variations of this illness, so we must make allowances for all.



Another quite common idea these days is that, people with dementia cannot speak, or do anything for them selves



I have even come across people who thought the illness was contagious, and others who thought that when you get the illness you become deaf.

So where does this all come from is it the old stigma.



One day I heard someone say, that if a person has Alzheimer’s, they are not worth bothering with, because they cannot take an active part, simply because they hardly speak.



These people tend to take more notice that anyone else, so it proves that this idea is totally unfounded and wrong.



Their actions and facial expressions tell you all you need to know. All you have to do is spend time watching what they are doing, and not make rash decisions about them

 

To really get dementia friendly communities to work we must

Try to understand the illness



Help and support those with the illness



We may have dementia, but we are still normal people



We may act strangely at times, but that’s because we are out of our comfort zone



A good friend of mine has been working with Banks so that we can get more support when needed. This means that people with dementia can go into any bank and not be made look stupid



The reason being that banks could not or did not realise, that people with dementia struggle with,  or cannot use Credit and Bank cards.



I think that they found this heard to accept



Trevor Jarvis from Doncaster, a person with Vascular Dementia, took up the challenge to make banks understand just how hard it is to use these cards in Banks, or withdraw money from cash machines etc.



After three long years this has now paid off, and we must applaud him for his sheer gusts and determination, to do this on his own and succeed.



Through this my wife and I have been working in some branches of Lloyds bank to make them dementia friendly, and this is paying off.



However this is only one small part of a major problem, which like it or not, is only understood by those living with the illness. Unless large companies etc., take notice of what they are being told by people with dementia, they will never move on.



Now we must ensure that every town, shop, hotel, and public service, are more dementia friendly, something we hardly see these days, but it’s improving by the day.



Churches can also do there bit, by arranging, services for those with the illness, Services which are short and to the point, without long sermons, and by using old well known hymns



We should now encourage local businesses to have standard easy to understand signs on their premises and have dementia friendly layouts, to cut back on confusion, when trying to find something



If we start early enough we can achieve something that would have been classed as impossible ten years ago, so it’s up to everyone to go out and changes things for the future

 

So let’s all go out and show the Country what is needed, small changes soon become big changes

Educate people

Show them what help we need

Help people to understand our needs

 

Clinical Psychologists tests in dementia

I often wonder how clinical psychologists can look at someone with dementia, and come out with the correct results; perhaps I am totally wrong here,

As I have Lewy Body dementia, I don’t use the mini mental  tests , as I was told that they are no good on people with Lewy Body Dementia, or so I am told by the consultants, because they say the results are misleading.

I use a longer form of tests which they think is more accurate, but I can never remember what it's called.

 So why is it when I go to see a Clinical psychologist, I don’t feel 100% happy

They always ask lots of questions and go over, lots of paragraphs and stories, with names and addresses, and then ask you questions.

Then when you cannot remember, they go back over the questions with prompts, with a series of answers in which you have to pick the correct one out, and can only answer yes or no, to each, but at best this is guess work or just pure luck if you manage to get it right.

But how can this be right if we simply don’t know the answer in the first place, and are told to make a guess at the answer. Sometimes they give a series of prompts,

In this life, whether at work or anywhere else, we don’t get prompts when we get things wrong, so just how does this work and how do they get the results right.

I do not understand these people, but perhaps they know what they are doing, I simply don’t understand it.

To me if I don’t know the answer, then it’s simply gone, because trying to force myself the think of an answer just causes unnecessary stress.

In normal life we never have the benefit of having the answers nearby or anyone helping us, because no one has any idea what we are thinking at any one stage,  so how can these tests be worth doing, and how can they prove anything.

I find this whole process very hard and distressing,  and sometimes feel as if they are making us look silly.

There are many times during the day that I go to do something, but then forget what I was going to do, but there are no prompts, and unless I have remembered to write it down somewhere it’s all lost and gone.

I know that many other people are struggling to understand this same topic for the very same reasons    

Lloyds Bank Staff and Dementia

Its amazing just how helpful our bank has become as far as dementia is concerned these days.

We have always had wonderful staff at our Branch of Lloyds Bank, and they have become more like family members in many cases.



We never said that I had Lewy Body Dementia, apart from a conversation with one member of staff whose Mum has Alzheimer's. My wife spoke to her one day, about her Mums problems and she spoke about my problems.



We then heard that another member of the staff had a husband, who has Parkinson's Disease, and she became a good friend to us too.



My wife has been asked to go in to do some dementia training at this Branch, and also do some at another local branch later on, which is brilliant.



They also want us to do a display about dementia at the branch, and have a chat with anyone who has problems. They are going to give us facilities to use if needed.



This is all down to a lovely manager, who wants to help all who have neurological illness, so that's just what we want these days.



We always go into the bank together, but occasionally I go in on my own, and when that happens the staff on duty behind the tills, always ask if I am alright, and need extra support with anything.

They also engage me on other topics which helps put me at ease, if I needed it.



This is something I would never get in any other situations these days, as everyone is so engrossed in their work, and on top of that things move so fast that I find it hard to keep up in I can do that.

All I can say is thank you so much Lloyds Bank



Their staff members have made a frightening experience, into a fully supported task



These people have all done Dementia Friends Training and the manager is arranging for other branches to have the same training which is wonderful news.



The next step is to ensure all bank staff in our area get the same training, something whch will be a vast step forward for those who struggle with Dementia

Dementia and eysight problems

Some time ago I did an item on eyesight problems in dementia, and was staggered by the response.



However after talking to experts last week, it appears that any organ can fail once the brain starts to go.



That can take it hearing, seeing, sense of smell, being able to pick up pain properly and decide how bad it is  etc and so the list goes on.



I have had my eyes tested over a period of time, and bought new glasses, which are fine some days, and other days my eyesight is rubbish, which all points to the brain not picking up properly what I am looking at.



I think that the brain is wonderful when it is working but can cause a lot of distress and destruction when it starts to fail.



Its all down to the signals it picks up and how it deciphers them. If only it was that easy to understand to the lay man like me.

Can you live well with Dementia?

While we were at a meeting we heard someone ask if it was possible to live well with dementia and that made me think, because it came from an old age psychiatrist.

 

 I sat and thought about this for quite some time before starting to write, as part of me was calling this person an idiot, but the other part was asking if he really knew what it was like to live with this illness

I guess it all comes down to getting a timely or an early diagnosis and then the correct support, help and guidance you need to get on with a new life.

 I do feel that most of this hinges on being diagnosed at an early stage, and getting medication, so that you can achieve a good quality of life from there on, although I do believe that it’s all down to the diagnosis and how it is handled by the consultant.

But you really have to try accepting the diagnosis, and try to be positive, even though, it’s going to be very difficult.

Find friends who are supportive, yes we all lose friends after the diagnosis, but are they really true friends when they go like this.

Find local support groups and dementia charities, which can help, and meet new friends who may well do different activities.

It also comes down to accepting your limitations and not trying to do the impossible,

Trying to work with your problems and not fighting them all of the time, so you end up feeling sad and depressed

Accept the failures and if possible try something different

Understanding that life will not all be a bed of roses, yes we have brilliant days, but we also have terrible days when our brains don’t seem to work.

Enjoy what you can do, and treat each day as a new start and a new challenge

When I was diagnosed my consultant gave me some advice, which I still try to remember and stick to.

My diagnosis

First diagnosis  

After the diagnosis of Dementia many like myself, are left feeling sad, and are left with nothing but negative feelings, as life as they know it is changing fast, and they have no idea just how they or others will cope with things from then on.

After my first diagnosis of early onset Lewy Body Dementia, I was left drained and shocked, as I had only ever heard of Senile Dementia,  

We then had to move home because I had lost my job etc, through the diagnosis, but by the time I saw the next consultant we found out that the first hospital had lost all of my notes.  However the first hospital had not been helpful according to my wife and gave us no advice or support

However my second consultant changed all of that within half an hour, as she told me to expect changes, to accept them and move on, as fighting could have the wrong effect.  We had two long sessions with her and in many ways she prepared me for the future

In her words:- you may struggle to do something one day , something that you have done for years and may not succeed in doing the project in hand.

If it fails, leave it and try again another day.  If after 4-5 goes it still fails, then leave well alone, as there was a danger in getting quite depressed at not being able to do other things, and therefore I should be careful, and think about it.

These words have kept me going, because I have lost the ability to do many things including hobbies, but I still have a life to live and will continue to do so while I am able.

But to many people who get the diagnosis of dementia, life as we knew it has come to an end, but many are encouraged to get involved with charities such as the Alzheimer’s Society where they can get help and support both for themselves and their carers.

To have a good quality of life we all need the support from others

But it should also be remembered that everyone, with dementia is totally different, and they react in different ways, no one size fits all.

By that I mean that some people can retain information where others find it difficult.

As someone said only the other day, not all forms of dementia follow a pattern as laid down in the text books, and many with the same form of dementia are vastly different, so please make allowances for us and give us the time to assess what is happening and answer in our own words

No two people with any form of dementia are the same; we are all individuals with individual problems and symptoms

Many like myself try to make notes as words don’t always come easily, and sometimes the wrong words come out leading to people thinking we are rude or aggressive, something that annoys me as it proves these people really don’t have a clue about dementia.

Don’t make the mistake that many people do, and that is ask a question and then try to answer it for us.

It is my view that those with this illness, should push themselves to the limit if they can in the early stages, as it would be very easy to give into this illness.

I must add that I am in no way restricted in what I do, as I still enjoy photography, walking and painting on good days when I can get things in the right prospective although these days are running out slowly, but there are limits to how far I will go before I stop myself, before I get frustrated at my inability to do things that I have done for many years.

As I have said before I use assistive technology in most of my hobbies, as it helps me carry on doing things like photography, and although it gets tiring carrying all the stuff around at times, it stops me thinking of what is around the corner.

There are many gadgets to help in this hobby such as tripods and remote control gadgets for the days when my hand shakes, but this does not stop me enjoying life

I agree that not everyone shares my views and I would not expect them to, as we are all different, and have different views, but at least these are mine and they have kept me going.

My quality of life now also takes in a lot of assertive technology, from hearing aids which have enhanced my hearing, to the voice activated software on my computer, all of which has enhanced my life, so I am not giving up.

As far as I am concerned I have a good quality of life and would like to hear from other people with dementia and hear their own views on this topic.

I also know that I am extremely lucky to still have the freedom to do what I want at present, but others are not as lucky as me.

This consultant also told me to write my life story, something that I did not understand at first, but when she explained it, it all made sense.

So much of my early life was unknown by my wife let alone my children or grandchildren, so it’s there for them to read later on, it also helps carers understand more about us if we ever need to go into a care home.

I was also told to keep a diary, because I was struggling with very graphic nightmares and dreams at night. The idea was that as these were still fresh in my mind the next day, I was to try writing them down so that it may help the psychologist when I met her later.

This all helps and it’s up to the person with the illness, to decide whether they are going to fight the illness and try to enjoy themselves while they can or just sit back and give in to the inevitable 

 Like many who have this illness, I have lost control of my writing, spelling, and grammar, something I was always proud of when I was working. I used to be in charge of two large Budgets at work, now my arithmetic is none existent on some days.

I was also responsible for all of the electrical work at work, and rewired the College Chapel, but now I cannot fit a 13 amp plug top

That is all in the past, most of which I simply cannot even remember, but I still keep going, because I simply don’t wish to stop and give in.

As long as people understand these problems, then we have no worries, if they cannot accept them then they really don’t understand this illness at all

I guess that like many people who have dementia, we have always remained active and I suppose we always will do, as we are fighters
 

So to answer the Question from the meeting

So is it possible to live well with dementia?

I think if you are positive, it is possible, but you have to accept the diagnosis and the changes, after that anything is possible

But remember that in the UK alone, there are many dementia organisations, like the Alzheimer's Society, Lewy Body Dementia Society, Innovations in Dementia etc, all there to help you, so please us them and get the support you need.
There are many more groups, but I simply do not remember them, however, one day I will make a list of them all to keep on the blog  

  

 

Feeling much better

I have now had two good nights sleep in a row, and I am starting to feel more like my old self again.

The weather is also lovely and I do think that this helps us feel much better.



Today I had a long walk around the City of Durham, and went round the Cathedral and Castle and really enjoyed myself taking photographs as I went



During this I also had coffee with the local Press Officer from the Alzheimer's Society, and had an interesting discussion about future projects

Although I have been involved with the Society for a long time, I do think we need to encourage more new people to come forward, to help raise awareness, as many like myself are getting a little stale and long in the tooth so to speak, and we need to see new faces in the media.



It would be good to see a different slant on media work from new faces, and new ideas of what is needed. Many like myself have done this for what seems years and there is a danger that we may become stuck with our own views if we are not careful, rather than looking at the full picture.

 

Good nights sleep

All of the time I have been on antibiotics I have not slept very well, and some nights I was down to 2-3 hours sleep a night, if that.



Other times I was trying to power nap during the day, which is helpful at times, but can also stop you getting a good nights sleep



A few months ago I was given medication by the consultant, which was to help me sleep, and also stop the horrible nightmares etc, but I stopped taking this while I was on the antibiotics, but this was because I have lost faith in our doctors and don't know whether they check the medication like the antibiotics etc on the computer before giving it out.



Last night I was so tired I went to bed early and slept for around 4 hours, and felt much better in myself, which was good. My wife had suggested I took the medication so that I could get a better nights sleep but I refused, because I was nervous, of what could happen during the night.



However we decided that I will go back on it tonight, and see what happens, its worth a try to see if I can get my life back on track again



I was also given a strong talking to today, and was told that I had to get back to writing my blog, so this is my first attempt although its taken me a long time to find the words.



I still feel as if my memory has been wiped, but things were slightly clearer today, so I am hopeful that a few good nights sleep will do me some good. I know that we all need sleep, but that's easier said than done when you have an illness like this

Motivation

Since my last chest infection, I have had problems concentrating and getting motivated to do anything, I suppose its all because I feel totally drained and tired.





Its as if my brain has been drained of the information, so even things like the blog are being ignored now as I cannot think what I want to say.





This has come as quite a shock to me, as this blog has kept me going for so long, and gave me a reason to fight this illness, now it feels as if that has gone.





I am not sure whether this will come back, but I am now prepared for the worst if it comes to it.

I have already decided to scale some of my activities back through loss of concentration, and think perhaps, I should just spend some time with my family and try to enjoy myself for a change.





As someone who has prided themselves on being active over the last few years, I thought I would be finding this harder that I am, but perhaps this should be telling me that its time to ease back



On top of all of this I have noticed that my spelling and use of the computer keyboard is starting to slip away, which is perhaps another reason why I am considering stopping all together now.



I have had immense pleasure  writing this blog, seeing it rise to over 45-000 readers in over 104 countries, and its now rising without me doing anything.





I now have the pleasure to know that I have done something to help others in my own little way and hope that I have inspired others to follow suite, rather than sit back and give in to this illness.



Hopefully when things settle and my brain starts working properly again, I may well come back.

  

Dementia friendly communities: the challenge

DH Friendly Communities

 

Dementia friendly communities: the challenge

 

In the Dementia Challenge progress report published on 8 November, the dementia friendly communities group described the challenge it is trying to address:

The challenges people with dementia have to deal with go far beyond a diagnosis and getting support from the health and care system.

People living with dementia often find everyday things we all take for granted, like spending time with friends and families, enjoying hobbies, going shopping or getting money from the bank, much more difficult.

A recent report from the Alzheimer’s Society found as many as 67% of people with dementia often do not feel part of their community.

People living with dementia said they commonly experience loneliness, isolation, anxiety and depression and three quarters of people said they feel society is not geared up to deal with people with dementia.

Trevor Jarvis, who has dementia, told us about the difficulties he has experienced accessing his savings from a bank. He explained he finds it hard to remember his bank passwords and PIN numbers. A lack of understanding of dementia within the financial sector often makes it difficult for people with dementia to use banking services and manage their money.

Even using public transport, something most of us take for granted, can prevent people who have dementia from being active in their community, leading to feelings of isolation. Difficulties in issues around communicating with the bus driver, getting off at the right bus stop and processing information can make it very hard to use buses.

What we want to be different

We want to create dementia friendly communities across the country. In these communities: people will be aware of and understand more about dementia; people with dementia and their carers will be encouraged to seek help and support; and people with dementia will feel included in their community, be more independent and have more choice and control over their lives.

By 2015, our vision is to more than double our initial ambition of at least 20 cities, towns and villages working towards becoming dementia friendly.

This means creating local Dementia Action Alliances to bring together community leaders alongside people with dementia and their carers to identify the changes and action needed to make their community dementia friendly.

It is about businesses, organisations and services understanding and responding to the needs of people with dementia.

Simple things, like changing the layout of a shop, improving or using different signage and training staff so they are more aware of dementia can make a difference. Even products can be designed and adapted to become dementia friendly.

Our ambition is to support wider society to make the change to enable people who have dementia to be able to confidently go about their daily lives safely and free from stigma.

Find out about progress on dementia friendly communities.

 

The more who join us the faster we will succeed in raising awareness and removing the stigma