Trevor Jarvis Friend and Mentor

I had stopped writing this blog because of difficulties putting words down on paper. But after finding a new software, and way of doing things,  I decided to write a tribute to a dear old friend and Mentor,  Trevor Jarvis, who died suddenly after a short illness.

Although I am getting the words down, I cannot find a way to get photographs on the same page.

Still here goes

Trevor Jarvis 

A few weeks ago, Janice and I we went to a service to remember a dear old friend of mine, Trevor Jarvis

Trevor was very well known in the Dementia community, for all of his hard work in raising awareness, as an Ambassador with the Alzheimer's Society,   among so many other things, however,  Trevor was always accompanied where ever he went, by his lovely wife and friend Ann, who I am sure had so much to put up with. 

I say this because Trevor as always trying to see the funny side of any situation, and had the ability to make people laugh, but he could also be very serious when he had to be.

Trevor was loved and admired by so many people, and I never ever heard him say anything nasty about anyone, simply because I don't think he could coukd or would do it.

He had the ability to see the good in every one, and that us very rare these days  

I first met Trevor back in around 2005, when I was given the  chance to go to the First UK Convention of People with Dementia  which was staged in Newcastle upon Tyne. 

At first I said that I did not wish to go, as I had,  had a bad experience with one doctor, and expected the whole event to be run by doctors etc. it never occoured to me that people with dementia would or could do it.

That day I met others living with one form of Dementia or another, including Peter Ashley and James McKillop, who were high profile speakers at the time.

By lunchtime I was hooked and wanted to know more about these people, and there groups

It was after this that I too became an Ambassador with the Alzheimer's Society, and joined the Alzheimer's Societies Living With Dementia Working Group, along with around 8 other people from around England. 

It was after this that I too became an Ambassador with the Alzheimer's Society, and joined the Alzheimer's Societies Living With Dementia Working Group, along with around 8 other people from around England.
As members of this  group we travelled all around the UK and sometimes abroad, if we were lucky enough to be selected 

Although I had given up writing this blog, I am trying  another method of getting my words down, and although I cannot work out how to transfer photographs using this method, I am doing this for a dear friend

Trevor Jarvis dear friend and Mentor 

RIP Trevor old friend and Mentor

Changes with in the NHS

The NHS is now discussing reforming the letters sent out by hospital doctors, in the hope of removing the jargon, 

The whole idea is to make these letters easy to understand by patients, without all of the medical jargon which comes within them,  but some doctors argue that these letters should be digital, thereby cutting costs, and by that, I guess emails

When will these officials ever accept that many people including elderly, do not understand computers etc, and therefore will not have access to digital letters

However as i said before, its not just the elderly, it covers quite a lot of people living within the UK many of who simply don't understand social media

Will these officials ever take this on board, or is this another way to keep people in the dark.

Considering the fact that most medical letters are written out by secretaries etc, not doctors, I wonder just what these people are hoping to achieve by this project.

Why blame the elderly for everything

Over the last few years we have heard the elderly being blamed for nearly everything that has gone wrong in the UK.

We were told that the problems within the NHS were all caused by the elderly who were blocking up the beds, even though in most cases, it's caused by the fact that many local authorities stopped providing social care. 

This in turn meant that those who cannot afford to pay for private care homes, and don't have any support at home are left in hospital after they have had a fall or have been ill, etc. 

But like it or not, this all goes back to the Government who have slashed the support and are starving the county council's, and this has the knock on effect.

It's certainly not the fault if the elderly but the government, and the vast cost of care homes, all of which have to pay their directors and shareholders etc.  

We must remember that many elderly people worked hard and paid their national insurance to cover our retirement, so its not our fault, but the last few governments who have changed the rules on retirement ages etc.

Now today we hear the Brexit is all down to the elderly in the country. 

But here again, many elderly don't really care about the lies we were told about this by politicians, but they realised that although we are paying to be part of the European community, we also have the security of working with these countries, and like it or not, this country has starved of it's security and armed forces over the years, and we could end up in a lot if trouble through this. 

The elderly understand most of this, but also realise that the politicians told us a pack of lies about the  whole story, because many have served in the armed forces, either by signing up or have done National Service. Most politicians have never ever served their country

Our children and grandchildren are the ones who will suffer in the end, not these wealthy politicians who from all accounts are making a vast amount of money out of this 

We must remember that must of the elderly have worked had for all, if not most of their lives, and have paid their taxes in full, unlike today when we hear of most well off people are getting away with paying only the basic tax, and sending the rest abroad.

This is the cause of most of the UK problems today, because of people banking abroad and hiding their real salaries.

So please stop blaming the elderly for everything which is wrong in this country, blame the politicians

Testing For Cognitive Decline Made Easier

Written by Brenda Kelly Kim

 In any form of disease, the sooner a diagnosis is found, the sooner treatment can begin.

Finding a health problem early is the best way to increase the chances of a good outcome. This is especially true in cognitive impairment. Whether it’s normal age-related memory issues, or something more severe, like Alzheimer’s, knowing where a patient is, cognitively, is crucial.

Diagnostic tests like looking for biomarkers in the blood are not available for most cases of dementia. Alzheimer’s has no definitive test that can say with the same certainty as an X-ray or other assays that there is a problem. Many patients must go through complex neuropsychological testing and detailed questionnaires on their health and habits. These kinds of tests are time-consuming and can be expensive as well. They are not entirely objective either, because confounding factors like IQ, socioeconomic status, and environmental factors such as places of residence. Estimates from the WHO and the CDC have shown that globally, the number of older adults that will develop dementia is growing every year. Right now about 50 million people worldwide are living with some form of cognitive decline, so anything that aids in early detection is vital.

A team of researchers from the UK and Switzerland has developed a remarkably simple assessment that their study suggests could help improve the process of early diagnosis of mild cognitive impairment (MCI.) About 30 to 50 percent of patients with MCI will go on to develop Alzheimer’s so a test that can measure impairment would be useful in helping patients and their caregivers set up early interventions like therapy, activities, or diet changes to stay as healthy as possible for as long as possible.

The research included UK researchers Dr. Trudi Edginton from City, University of London and Dr. Alison Eardley from the University of Westminster and was led by Professor Micah Murray from the University of Lausanne, Switzerland. It was published in the journal Scientific Reports. The cohort was 123 participants. Of the group, 51 were healthy young adults, 49 were healthy older adults, and the remaining 23 were older adults with a diagnosis of MCI. What they were asked to do was quite simple, but provided results the scientists say were valuable. Volunteers were asked to push a button whenever they hear a sound or see a light flash. The sounds and lights were visible on a laptop screen, but the team says that it’s possible that an app for a smartphone or tablet could come out of the work.

The patients in the study had to indicate when they heard just a sound, saw just a light or when they noticed both at the same time. The speed at which they indicated what they had seen or heard was measured. Cognition is often assessed via the sense of hearing or vision, so the test, while simple, can show quite a bit about a patient’s mental acuity. Using just the two measurements of whether they were faster at detecting light or sound and how fast they were able to detect a combination of both, the researchers say they were able to tell which had MCI and which did not accurately.

Professor Murray explained the work, stating “We are particularly excited about this work because it shows how very simple tests can help clinical practice by reaching a wider population, at a lower cost. We are happy that our findings clarify the link between our vision and hearing and their role in supporting memory (dys-)function; it becomes increasingly clear that how preserved our cognitive skills are as we age depends on how intact our senses are. This importantly extends our similar existing findings in school-age children.”

The clip below talks about cognitive impairment and some of the signs to look for, check it out.

Medical Bloopers

I read this article when I was at the last Balance clinic in Chester le Streeet General Hospital Durham. It was in a newsletter written by the North Durham Parkinson's Society.

Yes I know that this is a serious topic  but, I keep looking at this and it keeps me laughing,

Sign of the Times

Recently I took the decision to step back, and retire from doing presentations and talks, because of ongoing medical  problems.

This was not taken lightly, because as well as talking about Lewy Body Dementia etc, I got quite a lot out of it, and met many new friends on the way. 

But over the last few months, I knew that things were changing and that included my health, so after  talking to my wife, it was decided that I should retire, and try to take things easy, while I try to get my back, hip and gait sorted out.

The Orthopedic consultant said that I was walking with a very odd gait, and wanted to work out what is causing it, as it could be related to either my brain or spine.

My walking has got a lot worse, and find it difficult to sit properly, or stand upright  for any length of time, so I guess I realised it was time to change things, before I caused an accident

My daughter is a biologist, so she is often involved in any decisions we make like this, because she understands things better than I do.

I am blessed to have such a lovely wife "Janice",  and Daughter "Claire", along with our son "Mark", who helps us out, as and when needed.

I am so very proud of my family and Grandchildren, and would be lost without them all

Mark is also  training to do the Great North Run, and if successful the London Marathon, something I knew nothing about until recently, when I understood a post on face book

I say this because these days, I read something and don't always understand it, or get the true meaning, but that's all down to my brain 

It feels odd that I am struggling to walk far, yet Mark is running in marathons?

However I am very proud to have such a wonderful family, including 5 wonderful Grandchildren, who could ask for more.

During this time I have been honoured to be an Ambassador with the Lewy Body Society, who are doing a wonderful job raising awareness, and the profile of this illness within the UK, while also helping those living with this illness and their carers. 

This is a small charity, which does not have the vast resources available to the larger charities, but I do believe that they do a better job, because they focus only on Lewy Body Dementia, and are backed up by high profile people within the medical profession. 

While I am cutting back, I will still do what I can to promote the Lewy Body Society, because it feels like a big part of my family.

I am not sure whether I will carry on with this blog, because it's taken nearly three weeks to write this blog post.

Over the years this blog has been read by over 267-000 people, something I am very proud of, even though it all started as a complete mistake, but it helped to keep my brain active, so that must prove something 

Ken

  

Meaning of Hope

When I was undergoing my first diagnosis in Oxford, and was still working, I never let my religious beliefs go.

I suppose I was hoping that my religion would keep me going, and would save me from whatever was coming.

At this time most, clergy prayed for those who were sick, or dying, and it was generally accepted, because these people were usually seriously ill, either at home in bed or in hospital. 

However, I remember reading notes in my Office diary the other day, that I was at an Evening Service in Oxford and was staggered to hear the priest praying for me.

My wife said that I looked at her in disbelief, and perhaps shock, wondering why I was being prayed for, when I was in church.

I now understand that it is quite common, to pray for everyone who is ill these days, but I confess this did not help me at the time, and left me feeling very confused 

Originally, I had started going to this evening service because it was very quiet compared to the normal Sunday service, and easier to cope with  

At this stage I had forgotten how to say the Lord’s Prayer, and it took a lot of demanding work to bring it all back.

We eventually moved back to my family home in the North East, and we decided to return to my old church where we had been married and where I had been in the choir for over ten years.  

I then realised that the words I had learnt again, were totally different to those being said at the service.

After going to a second service where they sang the Lord’s Prayer, I decided enough was enough, simply because I don't cope with constant changes.

By this stage, I simply could not read words and sing at the same time. 

I then found that the Church leaders were not interested in people with memory problems, because we were told that if I was not happy I should attend the 8 am service on a Sunday morning. 

While I struggle to cope with my religious beliefs these days, I can understand why people turn to turn back to religion, to keep them going, and I guess to help them understand meaning of life.

I guess it also gives them” Hope", that small word with a big meaning.

Hope can bring meaning into a person's life, and help them to face challenging times without despair.

Hope is future orientated and experiencing, and "Hope", provides the strength to cope with painful and stressful events, such as receiving a diagnosis of Dementia

Hope gives a person the will power to think a cure may come along, or medication may improve or stop their illness in its tracks.

Finding "Hope" is a means of coping with this illness, and what is happening in our lives, and Professionals need to be aware, that even when "Hope" is unrealistic people must find their own meaning to life

Although I am struggling to cope with my faith these days, I still have "Hope"

I know that even though I lose the ability to do some things, I "HOPE" to fight on, enjoying my family for a bit longer, and enjoying the hobbies I can still do without assistance.

I know that I will never be able to enjoy my faith in the same way as I used to do, because of the constant changes to services and prayers these days, but as one clergyman said recently, that’s the way things are moving in the Church of England and there is nothing anyone can do about it.

To me it feels as if the religious leaders in this country have turned their backs on those who are ill and struggling with their faith. 

Many clergy say that it's a waste of time performing services in front of those who have memory problems or dementia, because they simply cannot take an active part. If only they took the time to think carefully.

Many grew up with familiar types of service and forms of prayer, and do not cope with constant changes to services etc.  

So, we must all fund our own way, and Hope we can carry on as best we can.

Raby Castle

Recently my wife Daughter and I went for a walk round Raby Castle in County Durham, a favorite place for may in this area, as its a stunning castle, with vast grounds gardens, Deer Herds and Long Horned Cattle roaming around the meadows.


The castle is set within 200 acres of parkland in the heart of the beautiful Durham Dales

We always pass this castle on our way to our static caravan, and in some ways it always feels like home, because back in the 1960s I was there with the Scouts, and on one occasion we stayed somewhere within the castle during one winter, but to be honest I really don't remember where we were no, as so much time has passed

Raby was built by the mighty Nevills in the 14th century and is one of the finest preserved medieval castles

Since 1626 it been home to the current owner, Lord Barnard. The family are proud of their heritage and are passionate about sharing the families, history and collections with visitors

                                  A bedroom believed to be one used by senior staff such as a Butler

There are two different types of deer within the Park, Red Deer and fallow Deer, both herds include descendants of Deer preserved from Norman times

                                    The main gatehouse as seen from the main gardens

The walled garden, which was probably set up to provide herbs and plants needed for medicines, however it was until the mid 18th century that the formal garden was established by Thomas Wright

Isle of Skye

Early this year we had a wonderful holiday, with a church group, which went up to the Isle of Skye

staying over at the White Heather Hotel in Kyleakin.  The Hotel was owned by a lovely couple, Gillian and Craig. who are very pleasant, and go out of their way to make sure that everyone has a wonderful holiday.

We have been there on a few trips, and I can honestly say that we have enjoyed the tour each time we go, because everyone is so very friendly, even though I no longer attend church these days, but everyone makes me feel part of the group, and try to help me whenever they can   

 Some of the rooms look out over the harbour, and I confess that I am totally struck by Scotland, and this area , on the West Coast

 The harbour with the ruins of Caisteal Maol, Kyleakins own castle, which was built in the 1400s, Not much of it is left these days

                                                            Cawdor Castle and Gardens

                                                          Caisteal Maol

                                                 Local fishing boats

                                               The island has its own Heronary

                                  The Skye Bridge which links the island with the main land

                                                          Eilean Donan Castle

                                                 
                                   Sun set over Skye Bridge taken from Kyleakin harbour

                                           The harbour at Kyleakin during the setting sun