Ending Blog

First written June 2018 and finished September 2018

After giving it a lot of thought over the last few months, I have decided to finally stop writing this blog now

This is for a few reasons, but first and foremost I am struggling to put my thoughts into writing,  without saying the wrong thing and sounding rude or aggressive.

I know I am getting very tired these days, and struggling to think clearly, but I guess this is a build up of medical problems  which are starting to make life very difficult. 

However I was starting to  think of closing the blog down in January and then in June,  because of my problems of putting my thoughts into words. 

I have re-used a few old blogs over the last  few months, in the hope of getting myself motivated, but realised that it's not going to work 

I have enjoyed doing this over the years, but I have lost total  interest,  but will let the blog run as it may help others.

I vaguely remember the fact this blog was  started by mistake, but it's been a journey, which I never expected, and lead to many new friends over the last few years.

My wife and I looked at the blog the other month,  and realised that it's been read by nearly 300-000 people in 120 countries,  which was quite an achievement, and one I am pleased with.

It's hard to accept that this post took nearly 6 months to write properly and get ready to send off, but that's life 

Shortly I will also be stopping using Twitter, for the same reasons. 

But life goes on. Thank you for all of your kind comments over the years.

Best wishes

Ken

Revolutionary Alzheimer’s blood test is 94% accurate 20 years before symptoms develop

Revolutionary Alzheimer’s blood test is 94% accurate 20 years before symptoms develop

6th August 2019

Healthcare news (industry news)

A new blood test has been developed that can detect Alzheimer’s-causing proteins in the brain up to two decades before symptoms begin to appear. A study from Washington University St Louis outlines the benefits of the test, which has a 94 per cent accuracy rate.

Early Alzheimer’s diagnosis is vital to combat the condition, because there’s currently no cure, and treatments can delay onset. Most people are not tested for the disease until symptoms, such as memory loss, start to occur and by then the condition already has a hold on the brain.

Early detection could mean many extra years with good quality of life, and the individual retaining their independence for a lot longer. At present, the average life expectancy after Alzheimer’s diagnosis is just four to eight years.

The progression of the disease can vary between cases, with some relatives seeing parents and grandparents slowly deteriorating. In others, the rate at which they become confused, isolated and scared is much more dramatic.

It’s widely accepted that there are seven stages of Alzheimer’s, starting with no clinical impairment right through to very severe cognitive decline. Most diagnoses occur during the third phase of the disease when people who know the patient very well notice changes in their loved one.

Despite scientists all over the world working on a cure for Alzheimer’s, the drugs on the market only slow down memory loss and reduce changes in behaviour, including agitation. Furthermore, these medications are only useful if the condition is detected in its mild to moderate phases.

While PET scans and spinal taps remain effective ways to diagnose Alzheimer’s, they are very expensive and intrusive, causing a lot of pain to the patient. This means a subjective test is usually used, which focuses on a number of questions directed at the individual and it is not up to the level of detail required.

The new blood test, which has been developed by Dr Suzanne Schindler and her team at Washington University St Louis, could be an effective and cheap method of diagnosis. Using the test alone, it matched the PET scan of plaques in the brain 88 per cent of the time, but once genetic tests for Alzheimer’s were taken into account, the accuracy reached 94 per cent.

In terms of what this could mean in the development of a cure, Dr Schindler said earlier detection of plaques could “speed up the process so we can find an effective drug faster. The value of the test is in identifying people very early in the course of the disease…and essentially clear out amyloid, and those people theoretically would not go on to develop dementia.

“Of course this has to be proven, but we think it might work. But to do this, you have to have a good test.”

One in six over-80s in the UK have dementia, with Alzheimer’s being the most common form. There are also 42,000 under-65s living with the disease. While these numbers are already substantial, they’re expected to increase in the coming years, making finding ways to effectively tackle it a pressing issue.

Mental Health and Dementia

Mental Health and Dementia

New findings promote lifestyle modifications.

Posted Jul 24, 2019

Source: kmac

Dementia is, unfortunately, a very common phenomenon among the elderly. As of 2017, there were as many as 44 million individuals worldwide living with dementia. In the United States, as many as one in three seniors has some form of dementia when they pass away.  

More than just a mental-health issue, dementia can be extremely taxing on the family and friends of the individuals who are struggling with the condition. It is far more severe than merely telling the same story that everyone has heard before. As the condition progresses, individuals with dementia lose their ability to live independently because they find it too difficult to conduct the activities of daily living—from doing household chores down to feeding, dressing, and grooming themselves—and this can often lead to frustration and aggression. In the later stages of dementia, individuals may not recognize family and may come to seem like completely different people. As they exhibit increasingly dysfunctional behavior, it may even make it too difficult for family members to continue to offer care.  

Dementia is not a disease itself, but a series of conditions that can arise when an individual is afflicted with one or more of the over 60 diseases that can cause dementia—most of which are quite rare. In approximately 60 percent of dementia cases, the underlying ailment is Alzheimer’s disease. In approximately 30 percent of cases, it is Lewy body dementia or vascular dementia. Of the remaining 10 percent of dementia cases, the underlying condition could be one of the following: Frontotemporal dementia, corticobasal degeneration, depression-related dementia, alcohol-related dementia (typically manifesting as Korsakoff’s syndrome), Creutzfeld-Jacob disease, Huntington’s disease, normal pressure hydrocephalus, or certain forms of Parkinson’s disease and some related conditions. It is often the case that diseases co-exist, most frequently with Alzheimer’s disease and vascular dementia. When this happens, it is known as mixed dementia. 

In most cases, genetics plays a dominant role in determining if an individual will develop dementia, and researchers have been relatively fatalistic about the prognosis of the condition. In other words, there has been a longstanding belief that dementia is inevitable for certain individuals with genetic predispositions, and that environmental factors such as lifestyle and diet do not play a major role in determining the course of the diseases that can give rise to dementia, with the obvious exception of alcohol-related dementia or dementia that arises from head injury, stroke, or a disease like meningitis). This is particularly true with forms of dementia that occur earlier in life, such as frontotemporal disorders or Huntington’s disease.  

New research, however, indicates that the environmental components behind some common diseases that give rise to dementia have a greater impact than previously thought. This is true for the three most common diseases that cause dementia: Alzheimer’s disease, Lewy body dementia, and vascular dementia. 

A New Hope 

A new study from the University of Exeter that spanned eight years and analyzed the data of 196,383 adults of European ancestry over age 60 is challenging the belief that one’s genetics solely influence whether one develops dementia. The study found that participants who had both a high genetic risk and an unhealthy lifestyle were three times more likely to develop dementia than those who had a low genetic risk and a healthy lifestyle. This should not come as a tremendous surprise. What was shocking was that the study also found that the risk of dementia was 32 percent lower in participants who had a high genetic risk if they maintained a healthy lifestyle when compared with the group who had a less favorable lifestyle. 

Londoner smashes world record for 289-mile triathlon by more than four hours

Londoner smashes world record for 289-mile triathlon by more than four hours

Megan White

The Evening Standard

Chris finished the gruelling triathlon on Tuesday ( Aurelien Meunier )

A Londoner has broken the world record for an epic 289-mile triathlon from London to Paris by over four hours.

Chris Leek set a time of 69 hours and 29 minutes, shaving four hours and ten minutes off the previous record of 73 hours and 39 minutes held by Mark Bayliss since 2012.

The 32-year-old from Orpington, Kent, completed an 87-mile run from Marble Arch to Dover, followed by a 21 mile swim across the English Channel, and a 181-mile bike ride from Calais to the Arc de Triomphe in Paris.

He also became only the fifth competitor ever to complete the feat without wearing a wetsuit for the Channel swim section, 

After setting off at 5pm on August 2, Mr Leek arrived in the French capital on Tuesday.

Chris and his dad Dennis at the finish line in Paris (Aurelien Meunier)

He said: “I’m completely lost for words. That was the hardest thing I’ve ever had to do. I can’t thank everyone who has helped me and supported me on this journey. 

“I genuinely can’t believe it’s over. I am tired. I am proper tired!”

Chris (with mum Linda) smashed the world record by four hours (Aurelien Meunier)

Mr Leek, a beer sales manager, is hoping to raise £1 million for charities which are close to his heart: Parkinson’s UK, Lewy Body Society and Saxon Day Centre.

His father Dennis, who is now 64, was diagnosed with Parkinsons at 49, before being diagnosed with dementia at 57.

The record-breaking attempt is made all the more impressive by the fact that he only trained for eight months, compared to most people, who train for around three years before launching the attempt.  

Chris and his supporters at the start line at Marble Arch (Charlie Crowhurst)

Linda Leek, Chris’ mother, says: “We have great pride in our son and what he’s done for his dad and those in similar positions. His training has taken up a massive part of all of our lives and it’s incredible that his wife, two sisters, friends and family have been able to support him through it all. 

“He’s always been very competitive, if he’s doing anything, he does it to win. Now the whole world knows that they don’t mess about with Christopher Leek! We love him very much.”

Mr Leek’s effort was sponsored by beer brand Michelob Ultra, who are offering a ‘pint of thanks’ to all who sponsor him.

To sponsor Chris, visit his Virgin Money Giving page.

NHS and medications

With this Brexit thing rumbling along at an ever slower pace, and the fact that this new Prime Minister is determined to take us out of Europe at any cost, I do worry about things like the NHS. 

As a lot of medical research is done between the UK and Europe, I always thought it was best to stay in the European Community, but perhaps I am wrong.  

However many Members of Parliament lied about the true reasons for leaving Europe, and very few stood up to tell the truth, leaving the general public to pick up the pieces 

This has lead many to believe that this is the  worst parliament for quite a long time, as we have no viable government and no opposition party Willing,  to stand up and be counted, because that is needed  for the less well off etc.

But if this all goes ahead, what will happen to our medications, as many if not all come from abroad. 

I have heard of Doctors trying to restrict medications, or change them for cheaper less efficient types, and this is just the start. 

The NHS like many parts of our services are in a dire state through all of the savage cuts, brought in by this government, and it can only get much worse, before the next election, and that is frightening to many people 

I think that its time that services like the armed forces, education and health should be dealt with by cross party committees, and not one individual political party, because over the last ten years all of our services have been savagely butchered.

Let us hope that something gets sorted out soon with Brexit,  and possibly a change of government so we can get the country back on a stable footing again. 

Not Coping with hot weather

After the hot weather recently, I realised that I don’t cope with it anymore. 

This seems to cause memory and cognitive problems, on top of the other long term breathing problems, Bronchiectasis and Emphysema.

Prior to this I guess I just assumed the breathing was down to my asthma, until I was rediagnosed with these two problems. 

I was always fine when we were on holiday abroad, but it seems that it’s the humidity causing the problems. 

While I like the weather to be warm these days,  I don’t like it to be too hot, otherwise the wheels come off and I get agitated and stroppy as my dear wife says. 

We went to our static caravan, but had to come home as it was too hot and airless, making me feel totally ill. 

I love being there because it’s a lot higher than it is at home, and the air is much cleaner and healthier, but I guess that’s life. 

As the weather is cooling down we are going back for a few days 

Understanding the obvious in life

We have always had a dog at home, ever since we were lead to believe that we could not have children.

However, not long after our first dog settled in at home, we found out that my wife was pregnant, so our first dog Major, became our daughter "Claires" body guard, as he protected her from the moment she was brought home from the hospital, and not even my mother in law was allowed near to her carry cot.

This was something new to me as I had never heard of animals being so protective like this ever before.

Major had not seen claire before,
but for some reason, he instantly took up his role as her protector.

After our son Mark was born, the same thing happened again, and he protected us all in more ways than one, until he died of cancer.

Not long after this we got another dog "Ben" , who was very nervous, but as I became ill we seemed to get closer, without me realising what was going on.

After losing my job as an Engineer to this illness, I spent a lot of time at home, and Ben, started to follow me everywhere I went,  but I never understood why until much later.

Around this time I started to see things in the house, but could not understand why Ben never moved from my feet, and never seemed to notice these things.

This was usually birds, flying around the house,  then this changed to big "spiders"

My wife later told me, that if Ben never moved, these things were not there, it was simply my brain playing tricks.

After being finally diagnosed with Early Onset Lewy Body dementia and was put on medication we realised Ben was ill.

He then died of cancer and that was very hard to cope with at the time, because there was a strong bond between us, something I did not understand at the time.

Afterwards the vet told us, that he had been ill for some time, but had probably kept it hidden until I had been diagnosed , then decided it was his time to go.

This made life do much harder, to understand at the time.

However this proves that animals are much more understanding, and in some cases more caring than humans, because they have the ability to pick up our problems.

Although Ben drove me mad at times, when he was following me around, I guess he was protecting and watching over me, so in many ways he was doing something similar to a dementia/ service dog, apart from the fact he was not trained to do the job.

He had his own problems with his nerves, and became a physical wreck when there was fireworks going off, so I spent time sitting on the floor holding him and trying to calm him down.

I vaguely remember being called out at night to go to work, as I was on call for emergencies 24 hours a day.

When I got home Ben's head would be poking out of the cat door waiting for me to return.

I often wondered if someone had done something to him earlier in his life, and that was the cause if his nervous problems.

However apart from that, he like Major   was a lovely dog to have around.

Processing information 2

A few weeks ago I wrote about problems processing information, but over the last few days I have noticed other problems, which will have an effect on others in the same position

While my eyesight and hearing give a lot of concern when I am out, and on my own these days, I think this is made much worse with the electric vehicles and bicycles we see every day. 

Having been caught by disability scooters on the footpath, I am starting to get worried when I go out on my own, but I like my independence, so I go out as often as I can on my good days.

However some of the drivers of disability vehicles, seem to think that they own the footpath these days, and are becoming a nightmare, because if they hit you, there is no way of tracing the owner, as you would with a car etc.

It’s one thing seeing a silent vehicle coming towards you, if you are prepared for it, but it’s totally different if your brain cannot accept that it’s real, of it comes up from behind

Seeing this, I often wonder if my hearing has gone all together, or is it my brain playing tricks 

Some of these electric bicycles can be very fast, and if you don’t see it coming you could end up being run over, because most don't carry a bell, something I gather is against the law these days.

While it may be good for the environment to use electric vehicles, I think it’s going to catch a lot of people out.

We live in a changing environment, and life as we knew it has changed, and is changing very fast. If only our brains could keep up with this 

World leading expertise in dementia with Lewy bodies

World leading expertise in dementia with Lewy bodies at local NHS Trust

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13-06-2019

A global review has named Professor John O'Brien, as the world's leading expert on dementia with Lewy bodies (DLB).

Out of 2,000 peer reviewed papers published since 2008 worldwide, Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) doctor and researcher, John, wrote or contributed to 86 papers on the condition.

England is the world’s top performing region in terms of expertise in dementia with Lewy bodies, according to the new data analysis published by Expertscape – a website which objectively ranks people and institutions by their expertise across more than 26,000 biomedical topics. The data also shows that worldwide, Cambridge is one of the top five cities contributing most into this disease area, topped by London and followed by Newcastle in second place.

Professor O’Brien delivers research with care as an honorary consultant old age psychiatrist at Cambridgeshire and Peterborough NHS Foundation Trust and Professor of Old Age Psychiatry in the Department of Psychiatry at the University of Cambridge. He is the National Specialty Lead for Dementias at the National Institute for Health Research.

John said: “Obviously I am delighted by this news, which reflects the hard work of study teams and collaborators in Newcastle and Cambridge with whom I have had the pleasure of working with over the last 10 years. The fact that my colleagues Clive Ballard (Exeter) and Dag Aarsland (King’s College London) also make up the top three, with England listed top country worldwide, is a testament to the real excellence of Lewy body dementia research here in the UK.

"We will continue to build on this, and I am very grateful to all our funders, including NIHR who funded the recent DIAMOND-Lewy Programme, and to the NIHR Clinical Research Network’s Dementias and Neurodegeneration specialty – who play a pivotal role in successfully delivering all our studies.”

Studies conducted by clinicians and researchers at CPFT, working closely with people living with dementia, have contributed to the knowledge base behind new care guidelines released by the National Institute for Health and Care Excellence (NICE) last year.

CPFT is a top performer in the East of England for recruitment to dementia studies. Recognising their contribution, NICE advises that all people with dementia should be provided with information on research studies they could participate in. Local residents interested in participating in dementia studies can contact the Trust’s Windsor Research Unit on 01223 219531 wru@cpft.nhs.uk.

John's research interests include the application of imaging biomarkers in dementia and late-life depression and he has particular expertise in Lewy body and vascular dementias.

Over his career, he has published over 500 peer-reviewed scientific papers on these topics and is a National Institute for Health Research (NIHR) Emeritus Senior Investigator.

The NIHR supports research into all areas of dementias and neurodegenerative disease. In 2018/19, the NIHR’s Clinical Research Network supported the delivery of 24 clinical research studies on DLB – recruiting 5,793 patients, with the DIAMOND-Lewy study contributing significantly to the total recruitment.

Find out more about research in this NIHR specialty

View the full Expertscape listing online

Notes

·        Currently it is estimated that 850,000 people in the UK are living with dementia, and the only way to find new and better ways to treat and care for those affected by the condition is to do more research. But researchers rely on people finding out about suitable studies and volunteering to take part.

·        NICE recommends that health and care professionals should help people living with dementia and their carers find out about opportunities to take part in research, and empower them to make their own decisions about getting involved.

·        One way to do this is to provide information about Join Dementia Research, a UK-wide service that enables people with dementia and their carers to register their interest and matches volunteers with the most appropriate studies, with no obligation. Current research studies range from clinical trials of new treatments to surveys identifying what works in improving the quality of life of people with dementia and their carers.

Find out more and register today: https://www.joindementiaresearch.nihr.ac.uk/

 

About Cambridgeshire and Peterborough NHS Foundation Trust

Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) is a health and social care organisation, providing integrated community, mental health and learning disability services, across Cambridgeshire and Peterborough, and children’s community services in Peterborough.
We support around 100,000 people each year and employ more than 3,700 staff. Our largest bases are at the Cavell Centre, Peterborough, and Fulbourn Hospital, Cambridge, but our staff are based in over 90 locations. We are a University of Cambridge Teaching Trust and member of Cambridge University Health Partners, working together with the University of Cambridge Clinical School. Together with global, national and local partners we conduct high-quality and ground-breaking research into mental and physical health and support innovation to improve patient care.