Showing posts from March, 2014

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…

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…

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…

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 c…

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 ea…

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 k…

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…

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 r…

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 carefu…

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…


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…

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 …