Stepping back

Over the last year months I have had problems trying to plan things out, and concentrate on what I am doing.

So I have decided after a lot of careful thought, that its time to step back from a lot of things and take it easy.

I have noticed that I can't keep up with fast moving topics in meetings these days, and that is hard to accept, but  I  want to stop before I make a terrible mistake

It's difficult I know, but I do believe it's all for the best, although I will still write the occasional blog if i can, and try to carry on with my photography. However I think it's getting close to the time where I have to say that  enough is enough.

I have arranged to complete some talks to graduate nurses this year, and after that I will have to consider what happens in the future.

It's been hard to accept just what is going on in my brain, but I feel that I have to slow down. This has had a knock on effect with walking, as I have also had problems with tripping while walking over the last few months, and this appears to be getting much worse these days.

Early next month I have another assessment with the Clinical Phychologist and  I confess that I am not looking forward to that.

I next expected this blog to get the coverage it has got over the last few years,
"218-300" page views in "114 countries",  but I find it very hard to think of topics these days, so I guess I will soon be stopping altogether.

However I know in my own mind that I have achieved many things since my diagnosis, and have been amazed and honoured to have been so involved with so many new friends.

This is all down to my family and so many wonderful friends

Thank you one and all

Blogs around the world

Blogs are used by many people these days, some as a daily journal, while others are about personal medical problems or interests

Although my own started off as a way of describing my graphic nightmares and other problems linked to Lewy Body Dementia, I often look at things like photography and wildlife, something I love to follow while I can.

I have often been in the lucky position of photographing wildlife, which has given me so much pleasure, because to me on a good day, it's a real bonus.

While the professionals see things on a daily basis, I am not always thinking clearly enough, or don't have a camera with me, so when things really click together it gives me so much joy.

The other day my wife and I were out for a walk and I saw something move, but as normal, I have to look at it carefully to see if it's real or my brain playing trucks.

It was only when my wife yelped that I realised, that yes it was real, and it was some form of mouse.
I don't know if it was a door mouse or a field mouse, but it was happily munching away on something ignoring us.

So I managed to get my phone out of my pockets and photographed the small animal.

Some days at our caravan I see other wildlife,  if I am lucky to get close enough, like the young rabbits around the site.

There is something relaxing about watching wildlife, and I really enjoy it,  when my eyes and brain are working

However many people these days write about one topic or another and never  cover anything else.

These days I don't always have the ability to remember as much as I used to do, so I use voice activated software to remember things, or the recorder on my phone,  and this helps me to remember the topics I want to write about, and any useful information

Writing blogs is a way of exercising explaining things like an illness, in the hope it can help others, or it may be a way of removing stigma etc.

If I ever get stuck on a topic, I sometimes look it up on the internet and then use any relevant information, but also state where utility come from.

I do this so that it may help others understand medical problems I have, but also highlight the useful websites or charities who produced the information.

The reason for this is because I feel that many consultants don't have three times to explain things as you need them, so you are left to find your own way

Excessive Daytime Sleep

I feel very tired these days and it's unnerving to simply drop off to sleep without any warning, but this is happening on more and more occasions these days, which is embarrassing, if someone else is in the room.

Some days I sit down after a slight walk and before I know what is happening, I have gone off to sleep and this does not make any sense at all

I know that I don't sleep well at night for one reason or another, but when this hits it is a shock to all around, as I have even drifted off when people have been in the room, and that can be upsetting

I have never experienced anything like this until the last year, and it's frightening and embarrassing when it happens

Some days I can feel my eyes feeling as if they are being forcibly closed, and I cannot fight it or stop it

 

We had put it down to other problems but nothing seemed to fit until I read a report from the Parkinson's UK website.

I am not sure if anyone else has the same problems, but its well worth reading

I am being assessed again next month, so its something that we need to bring up   

I know that Lewy Body Dementia and Parkinson's are similar but after reading the clip below it all started to make sense to me

Taken from the Parkinson's Web Site

New research into fatigue and excessive daytime sleepiness in Parkinson's

3 December 2010

New research published in the European Journal of Neurology this week suggests that 72% of people with Parkinson's suffer from fatigue or excessive daytime sleepiness, with just under half of them suffering from both.

This study highlights just how common sleep problems are in people with Parkinson's.

The researchers at the University Hospital of Zurich in Switzerland studied 88 people with Parkinson's.
They looked at how common fatigue and excessive daytime sleepiness are, if they overlap, and whether they are linked to other Parkinson's symptoms or medications.

What the researchers found

• 72% of people with Parkinson’s experience fatigue, excessive daytime sleepiness or both.
• Fatigue was found in 52 (59%), excessive daytime sleepiness in 42 (48%), and both complaints in 31 (35%) patients.
• Fatigued people with Parkinson's had more severe movement problems and were more likely to suffer from insomnia and depression.
• Insomnia was also more common in people with excessive daytime sleepiness.
• Medication seemed to play a greater part in excessive daytime sleepiness than fatigue - taking dopamine agonists plus levodopa appears to make excessive daytime sleepiness problems worse.

Tackling sleep problems for people with Parkinson's

Our Director of Research and Development, Dr Kieran Breen, comments:

It's hard to explain just how overwhelming the tiredness is, it's as though every ounce of strength just pours out of my body.

"This study highlights just how common sleep problems such as fatigue and excessive daytime sleepiness are in people with Parkinson's.
"It's vital that healthcare professionals assess these symptoms because they often have a major impact on people's quality of life.
"We still don't fully understand what causes sleep problems in Parkinson's.
"But studies like Dr Roger Barker’s project 'Combating the sleep problems facing people with Parkinson's' funded by Parkinson's UK will hopefully lead to an improved understanding and better treatments."

Excessive daytime sleepiness

This is also known as daytime hypersomnolence. Parkinson’s medications can cause excessive daytime sleepiness or sudden onset of sleep. This can be severe.

This may be more likely in people with later stage Parkinson’s who are on multiple medications. It can also occur when increasing medication, particularly dopamine agonists.

Excessive feelings of sleepiness during the day can also happen if you’re not getting enough sleep at night. The effect can cause people to fall asleep or doze off during normal waking hours.

In some cases, it can even lead to the sudden onset of sleep.

This can be dangerous if you are doing certain things, such as driving or operating machinery.
Medication may help, so speak to your GP, specialist or Parkinson’s nurse.

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Signed off from Chest Clinic

To day "Tuesday" I returned to the chest clinic to see how things were progressing

I have Bilateral Bronchiectasis, Emphysema, and a problem with a Chronic  Heamophilis Influenza bug,  which is embedded deep inside my lungs.

While there is no way to remove the Heamopholis Influenza bug, the new tablets and inhaler seem to be keeping my lungs free from further infections which is good.

So today I have been signed off from the chest clinic, and any future problems will be dealt with by the family doctor.

While this is a good thing, I am left wondering if I will get a doctors appointment  of I ever need one.

Last time we tried my wife was told that there would be a three week wait, so if things went wrong I would end up in hospital.

I do have an emergency pack of antibiotics at home  just in case things go wrong, and I need to take them on holiday so that I am covered if I get another chest infection.

I guess its all down to us keeping an eye on my chest problems, and hope that I remain free of chest infections for a bit longer, possibly until the winter time, when we know that they are bound to return again.

I am now feeling positive about this now, so I am hopeful.

Shopping centres

I confess that I struggle in modern town centres these days, but that is for many reasons.

One of my main concerns are these very large statues or manikins which seem to get sprouting up all over the place

I have been shocked at times when I have turned a corner and have come up to one of these enormous figures, which seem to come on all shapes sizes and colours.

I confess that I don't understand why shops etc,  need these enormous figures because they are far too big to use as displays for clothing etc.

They are more like things from outer space these days and thus dies not make any real sense at all.

But I guess that I am not alone with this.

There have been many occasions, when I have stopped somewhere in a clothing shop, and when I have turned,  I have been right next to one of these things, and then end up getting a shock.

No one seems to have any idea as to why these things are unused at all because of the shear size.

These statues can also be seen on the streets around town centres, and many people are spooked by these, but I guess thus happens when your brain is not working as it should do.

I often have to look at things a few times to work out if they are real or imaginary which does not help, but that's all down to my illness, but I wonder how many others are troubled by these things these days

New Guidlines for Lewy Body Dementia

New international guidelines to identify dementia with Lewy bodies

Published on: 8 June 2017

From Newcastle University

New guidelines have been published on the clinical and physical indicators to help ensure patients with dementia with Lewy bodies get an accurate diagnosis and the best care possible.

Professor Ian McKeith

Our guidelines now distinguish clearly between clinical features and diagnostic biomarkers, and give guidance about the best methods to establish and interpret these

Professor Ian McKeith

The death of Hollywood actor Robin Williams in 2014 threw the condition into the spotlight as it was identified he struggled with the illness.

Now scientists at Newcastle University have led an international team of experts to produce new recommendations to help diagnose the disease more accurately and improve management of the complex disorder.

According to research published online today and in the July 4, 2017, issue of Neurology®, the medical journal of the American Academy of Neurology, the world leaders in their field highlight important clinical and diagnostic biomarkers, but call for more clinical trials into the illness.

Pressing need to understand condition

Ian McKeith, Professor of Old Age Psychiatry at Newcastle University’s Institute for Ageing, led the international dementia with Lewy bodies (DLB) consortium, which last reported on diagnosis and management of the illness in December 2005.

Professor McKeith has been instrumental in leading this research over the past decade, which has been supported by the NIHR Newcastle Biomedical Research Centre, a partnership between Newcastle upon Tyne Hospitals NHS Foundation Trust and Newcastle University.

The new recommendations were established by experts, including patients and care organisations and highlight the importance of detecting the disease early.

Professor McKeith said: “There remains a pressing need to understand DLB, to develop and deliver clinical trials, and to help patients and carers worldwide inform themselves about their disease.
“It is important that people are aware of the condition’s prognosis, best available treatments, ongoing research, and how to get adequate support.

“Our guidelines now distinguish clearly between clinical features and diagnostic biomarkers, and give guidance about the best methods to establish and interpret these.
“Without accurate diagnosis we can’t do the clinical trials that are needed to demonstrate a treatment that works.”

Dementia with Lewy bodies

DLB is a disorder that shares symptoms with both Alzheimer’s disease and Parkinson’s disease. It may account for 10% to 15% of all cases of dementia yet it is not sufficiently recognised.

The new guidelines focus on clinical features, such as visual hallucinations, motor features of Parkinson’s disease, and rapid eye movement sleep behaviour disorder.

Detailed information is also provided about the best biomarkers to use to help confirm a diagnosis when a patient presents with one or more clinical features.

It is estimated that more than 100,000 people in the UK are affected by the illness, and over 5 million people worldwide.
Professor McKeith said: “Newcastle has been at the forefront of DLB research since the late 1980s and we continue to be so as more and more is understood about the condition.”

Future research will focus on family studies to find genes relating to DLB, on collecting biological samples from large population-based cohorts, and on developing a publicly available DLB genetic database.

Jacqui Cannon, CEO of the Lewy Body Society, said: “It is so important that people receive a diagnosis of the correct subtype of dementia, only then will they receive the correct support, care and medication. This is particularly important for people living with DLB.”

Devastating disease

Marjorie, Harry and Debbie Ainscow

Debbie Ainscow knows first-hand the devastation that dementia with Lewy bodies can cause as her father lived with the condition for more than seven years before his death, aged just 79.

Harry lived an active lifestyle, yet his illness turned him into a man who was unrecognisable as he suffered upsetting visual hallucinations, became incoherent at times, and was rigid in his movements.
Mother-of-one Debbie, 48, of Boldon, South Tyneside, said: “I didn’t know anything about the condition until my dad received his diagnosis – it came as a shock and was devastating.

“It was heartbreaking to see how the condition changed him. He would shuffle along and became very rigid in the way that he would walk and move.

“It was very upsetting and challenging to see my dad’s dramatic change in personality and his aggressive behaviour, this was probably the hardest part.

“At the time we didn’t know anything about DLB and it was difficult, especially for my mum, Marjorie, who was with him 24/7.

“Had we had the ability to access guidelines like the ones published today it would have made a big difference and we would have felt less stressed because we’d have understood the condition better.

“It is very important that patients and families know how the illness presents itself as this can help people develop coping strategies to get the best quality of life possible.

“It is fantastic that Newcastle is leading the research into DLB and I am delighted to see that new recommendations of how to diagnose and manage the condition have been published.”

Reference

Diagnosis and management of dementia with Lewy bodies
Ian McKeith et al
Neurology: doi 10.1212/WNL.0000000000004058 

Election fears

Since today's election I confess that I feel very nervous for all who have terminal illness or dementia

This government has a very bad reputation where the health service is concerned, and now fear that they may well go ahead with their dreaded dementia Tax.

This is not just a tax on dementia, but a tax on all who have any terminal illness, and I think many people will now be nervous of what's coming.

I can only hope that charities stand up and campaign against this, in the hope of stopping it getting off the ground.

This may only be the  first step, and health care may well be cut back even further in the future, as the country seems to be in a financial mess which can only get worse,

Sadly this government has told so many lies about the state of the NHS and the numbers of Police officers etc, I think we may all be in for a rough ride over the next 5 years.

This country is reportedly wealthy but all of the money is going to those who are well off, not to the normal working class people who are paying more tax than ever before.

Most people in this country are worse off these days due to all of the cuts, and I fear it could all get much worse, the longer we are controlled by this right wing Government

I can understand them wanting to cut benefits, but they should have hit those who have never worked in their lives, and not the disabled or terminally ill.

I have come across many in my life who have never worked, and had no intention of working, because they are well off with all of their benefits, and that to me is very wrong.

New Dementia Strategy needed

A few years ago we saw the launch of the National Dementia Strategy in the UK, and many like myself thought that the Government was really going to improve the lives of those living with Dementia or caring for people with the illness.

It had pledged to spent millions on dementia in the future.

But as my wife and I found at the Launch of the Strategy, there was no new money going into the project, it was money already in the NHS.

This answer can from the Government Health minister at the time, and I confess that we were staggered

What is more, this money was not ring fenced, therefore hospitals could use the money for any project they wanted

Many people worked on this project over the years, and all had high hopes that it would succeed, but obviously the Government at the time had other ideas.

Over the years many groups have had meetings about improving services, but I am left wondering where the money went.

While some services had improved, I do feel that we should have seen more improvements around the country by now.

Like everything else in Dementia, it's down to the post code lottery, where, if you live I the right area, you get better services

This Strategy period has now finished and no one in the Government seems to be interested in a new National Dementia Strategy.

All they talk about now, is what we are calling the Dementia Tax,  something that I and many others find to be a total insult in this day and age.

This is not just a tax on dementia, but also on all those with a terminal illness, people who may well need home care

So I do wonder if a new Dementia Strategy will ever happen now, because this Government pledged to spent millions on mental health last year, but this money never appeared anywhere.

I know that the cross party committee on Dementia is focused on improving the lives of those with the illness, and as someone who spoke at the launch of this I feel very proud, that they are still doing so well.

But I do feel now that the country is in such a financial mess these days, that things may well get worse before they improve.

However to put a tax on dementia or terminally ill these days is discrimination, towards those who have been inflicted with an illness they have done nothing to attract

Dementia like other terminal illnesses are devastating enough without Governments making life worse

Dementia is not self inflicted, and I have to ask why people like myself are being hit

Hospitals are full these days of people who get drunk every weekend, and  then need hospital care.

These people are not taxed, and they will possibly go on to have major health problems in the future.

The Health Service Problems were caused by this and previous Governments, who failed to make sure that there was enough money in the system.

To me it seems that if the NHS is in such a mess, the next Dementia Strategy will never get off the ground, and the previous one is doomed to end before much longer.

I do feel that we must start asking our Members of Parliament or those asking for our vote, what they intend to do about the Dementia Strategy and the Dementia Tax? 

Your vote counts, so please ask your MPs about this illness and the NHS