Sunday, 13 August 2017

Guidelines to halt dementia

When I read the guidelines for stopping or halting dementia the other week, I was left feeling as if something wrong, some where along the line

It's taken me nearly two weeks to think this through, because I was unsure whether I had read and understood  it properly, but now I am ready to comment

Before this all started I was very active and walked quite a lot during each day, on top of doing my job.

I found a note the other day in an old diary, where I walked or cycled  around 10 miles each day, sometimes 15 miles to and from work, yet a doctor giving me a medical examination, said that this was not being active enough.

I dare say many doctors don't walk that far each day.

My brain was kept active, because as a college engineer, I was always busy if I remember correctly, either planning, estimating, or doing something else which kept the brain active.  I was on call for breakdowns, and when I got home we were usually found in our allotment garden,  growing vegetables etc.

Like thousands of other people, I don't understand or see how I got this illness.
How can you go from being active, as well as running two budgets, doing estimating etc, to counting on my fingers?

Like many other people, living with this illness, we can't get the answers to these questions

No one really knows what causes dementia, but there are many people who think that they can tell us how to remain free from ever getting dementia? Including many in the media.

But if that is the case, why is it that thousands of people in the UK alone, are diagnosed with this horrible illness every year.

These comments in the news a few weeks ago, upset quite a lot of people living with this cruel illness, because it's fairly obvious that those writing these comments, neither had a lot of experience in dementia, nor are they living with it.

Looking at this the other day, one  person I knew, commented that after reading these notes, it made it sound as if most of us had been lazy or inactive all of our lives, and rather unhealthy?

There was also a comment about why, "the large dementia charities"did not pick up on these silly guidelines

As one person with dementia said one day. Any fool can write guideliness about an illness, but unless that are living with that particular illness, they don't really have the experience to write about it.

It's a bit like health and safety regulations.  If you have not been trained to do a certain job, you can't possibly write out the regulations?

I confess that after reading the guidlines I felt exactly the same.

Dementia has been around many years, yet our grand parents ended up with it, even though they never stopped working, from early morning until last thing at night.

Many of these people never drank alcohol etc, either,  and had busy lifestyles.

So I do wonder why "so called" experts tell us that by being well educated, keeping active  and eating well,  stops you getting this terrible illness.

It's not so very long ago that we were told that our grand parents ate lots of foods which were unhealthy?

Yet when you look around these days, it leaves a lot to be desired seeing all of the  wall to wall fast foods etc consumed every day.

I have even heard of academics etc ending up with the illness, so no matter what sort of lifestyle you have, you are capable of getting this illness.

So let us hope that in future people think carefully before writing things like this.

I also hope that the media stop using "this illness" as a way of selling their newspapers etc.

Monday, 7 August 2017

Eyesight changes

Over the years I have had many problems with my eyes, yet the Eye specialists don't seem to recognise what is going on.
Many don't seem to understand neurological illnesses,  like Parkinsons/ Lewy Body Dementia etc, all of which it seems can cause eyesight problems
I never really  understood whether my problems were down to the eyes alone, or whether the brain and eyes were not working together.
As someone said the other day, the brain recieves messages from the eyes etc, so it's down to how the brain uses these messages.
I guess that's why I sometimes look at a road sign, shop sign, something in a book, or on television, and say the wrong place or word.
I wonder if its all down to my brain is telling me the wrong thing. This is very disturbing at times, although I try  to laugh it off,  but it can be serious
In some ways this explains my problems with moving staircases and marble floors etc, because the brain is getting the wrong messages, or is changing the messages it receives.
Things like blurred or double vision can be disturbing, but it seems that they are part of Dementia and Parkinson's etc, including Lewy Body Dementia.
The Eye specialists always seem to do one thing, and that is to fit your glasses with prisms to correct the double vision, because they don't realise that the problem is nuerological, and can be intermittent.
I have had prisms fitted to my glasses before, but had them removed because my problems are intermittent, and after a while I get a pain in the eyes.
Besides which, this glasses with prisms cost a lot more than normal glasses, so it gets very expensive when you have more than one pair of glasses
Yes it's difficult, but I prefer to shut one eye, and then open it later when the problem clears.
Things usually go haywire when I am too close to something or someone, then I see double
I often joke about which "wife" I am going to kiss, knowing full well who it is, but I am seeing double.
However I wonder just how many specialists consider the fact, that we don't always remember things that happened
But people , in a myself can't always remember when something started, or how long it went on for, or stopped, so we cannot always tell a specialist what they need to know
It's no good telling people to write notes, because it's not always possible to remember to do this
So when it comes to eye tests etc, we cannot always describe things as they happen, as well as we are expected to, because of our inability to remember things clearly
In many ways it's a double edged sword, because your brain, eyesight and memory are working against each other
This in turn has an effect on your abilities to plan things out carefully each day,
Even though I have had this on and off for 10 years, I get round it by closing one eye, and this works. Prisms only make matters worse because the double vision is not permanent.
There has been a lot of discussion about eyesight problems in people with dementia, but it appears that the problem is worse than the authorities seem to think.
Our eyes are important to us all, but when things are not recognised on a daily basis in makes life very difficult.

Tuesday, 1 August 2017

Life changes at the diagnosis

I know they say you should never look back to things you have lost, but there are times when I feel it's not a bad thing,  because you understand the important things you have still got left in your life

However I still don't understand fully how I got to this stage.



I had been an engineer for 28 years running the maintenance department etc, along with two large budgets, as well as doing  estimating, and electrical work.

Then things went off the rails so to speak.

When things started to change during my diagnosis,  I had no idea how long it would last, or what would change in my life.

The answer to the first question was given by my consultant in County Durham,  "How long is a piece of string".

In other words, as my wife explained to me later, until we know, the correct type of illness, and how long the illness is going to take to  progress, we cannot tell.

We were also given a sheet of paper, with possible symptoms and problems which I could be faced with, but I guess nothing prepares you for the challenges faced after a diagnosis like this.

Nor can you imagine the changes which you could be faced with, but I guess this is because at this stage, you have already started your journey and don't really understand what may or may not come your way.

At this stage my daughter was expecting, but I had no idea whether I would see my grandchildren grow up or get to know them.

I  am now  blessed with 5 lovely grandchildren from my son's family and my daughter's family, which is a blessing on it's own, and I have to hang onto that as a positive.

Children can brighten your day up, although the noise can be hard to cope with if they get excited

However while I realised that  I could no longer remember how to do my Job as an engineer, like  electrical work or do estimates, I never expected other things to disappear from my memory.

How can you go from running two large commercial budgets, and estimates, to counting on your fingers?

I can look at something many times, and yet never see the obvious and that is hard to accept. How can you keep missing things which are so  obvious and under your nose?

I think the worst part early on, was realising that things were not always as they should be, but I also think it was realising that I am no longer in control if my life.

It sometimes feels as if my brain has a life of its own, and I am no longer in control of things.

But I suppose our brains are in control, and without them working properly,   we would be useless, but this does not always help

Realising that I am always making mistakes,  which would have embarrassed or annoyed me years ago, yet I can't do anything about this.

There are days when things like big numbers, and words , don't mean a thing to me anymore, and it's hard to work out why I don't remember them anymore
Yes there are days when I see a number and realise what it means, but these days are running out, or seem to be

Its very hard,  when things work one moment, and the next moment things are total rubbish 
I know that things change quite a lot with  this illness, so I can't always plan what I want to do a few days in advance,

Trying to read a book can be a mine field, because these days I simply don't understand some words any more, so I have to skip them.
But then I hardly remember what I  have read away way,  whether this is a good thing or not, I am not sure.
It has positives because I can read some books again and again, but still don't remember the story


So it's my good times when I will attempt to write anything, or use social media, but these days are running out, due to mistakes that I don't always see when writing.


I dread going out at times because I often say the wrong things and that can be distressing, because it's usually the opposite to what I  meant to say.
This often causes upsetting times with my wife at home, when it comes out wrong, but I dread to think what other people may think.

My grandchildren seem to make allowances these days, although I  think they understand that I make mistakes, as part of the illness. 
There are times when it worries me, just in case I say the wrong things in front of them

Understanding everything that's going on around me at times can be distressing, because I quite often misunderstand what is going, on or what has been said

I get annoyed at the television, then my wife explains that I picked it all up the wrong way.

This also happens in conversations, when I misunderstand what has been said, and then answer wrongly

Marble floors can be a total hazard on a bad day because I see things that are not there.
I know that it was all explained to me a few years ago, but it does not help  when your brain tells you something else.

I guess it's all down to the brains view of what it's seeing, which could be totally wrong in all reality.

Things like moving staircases can also be a hazard, because I am never sure when to get on, and if I stand in the wrong place when going down,  I end up being pushed by the rising treads.

All this adds to the pressure to get things right, and in turn adds to the agitation


Monday, 31 July 2017

The Great War

Many of us had people caught up in the First World War

This was well known as the War to end all wars

My Grandfather was in the Durham Light Infantry, and  had left home to fight for his country

A few years ago my wife and I went on a coach tour, and we were able to visit Ypres and Passchendale where my Grandfather fought alongside his friends etc.

This in many ways explained some of what had happened, but it was so very hard to understand the horrors of this war.

I read my Grandfathers diaries before they were lost in a flood, and they brought tears to my eyes.

He had left school and got an offer of work in the local coal mine where his family lived, but decided to sign up to join the army, to fight for his country, because like others, he felt it to be his duty

A lot of his friends also signed up, because they had been told that they  would see the world, and they were also told that the war would be over before Christmas ?

When I think of this, I wonder just how many young men would do this these days.

He had been injured by shrapnel and was brought home to recuperate before going back again.

When he went back, he heard that many friends had died in the gas attacks, and this left him distressed because he felt he should been there.

On his return he got the offer of work in  the local mine again, but this never lasted along because of his injuries

He had changed from the happy young man, to someone who would spend hours just walking in the countryside, or sitting deep in thought.

I wonder just how many coped with the horrors they had seen in thoughs  few short years.

I guess as a child I knew someone who had hidden nightmares of this horrible war, but he would never ever talk about it.

He was a man who always seemed deep in thought, but he would never talk about this, to either myself or my mother.

He would often take me to local cricket matches in our town, or we would spend hours walking across the countryside.

Looking back , I  wonder if these long walks, were places where he could  listen to wild life and think of the horrors that he had escaped from.

Perhaps it was a way of proving,  that he could walk without being shot at.

I suppose the long  walks and listening to wildlife was a way of reassuring himself that the war was truly over even though his nightmares were still with him

He would often explain what bird made certain noises etc.

But this hid the real man who was still struggling to cope with life, and I guess that wildlife was a life line, and kept him going.

From his diaries I often wondered if he had felt guilty about coming home injured but alive, when he had lost so many friends from his village.

To me he was a giant of  man, and so gentle, but I can never imagine what was going on in his mind.

I miss him a lot.

My wife's Grandfather was also in this war, but we never heard anything about him after signing up, and nothing was ever said

God bless all of those who live with the memories of this horror, and those who lost loved ones.

Thursday, 27 July 2017

TBI and dementia

Last week I noticed a news topic about Traumatic Brain Injury and Dementia, and posted it on my blog.

This is a topic which has concerned many people over the years, but no one seems to know whether there are any links or not, so I guess the jury is still out on this one

Taken from an old blog

In the late 1970s, I fell around 15 feet and hit my head on the ground, and vaguely remember lying on the ground  thinking that my head had exploded before I passed out.

I don't have a clue as to how long I was out, but somehow managed to get up off the floor and staggered back to the office to see my boss,   and then went home, where my wife took me to the doctors

Later that day, I had the mother of all headaches, and was taken to hospital,  but after a few x-rays, I was sent home.

My wife said that the doctors did not seem too concerned, because she had rushed me in by car rather than calling an ambulance

The hospital that night was also very full, of people waiting to be seen, and these two doctors were rushed off their feet.

However sometime later, I was asked by a different doctor, why I had not been sent for a scan to look for brain injury, but it appears that this never happened

The following day I looked like a panda according to my wife, as I had two enormous black eyes, and a headache which felt as if my head was splitting open.

After contacting the hospital, I was told to take paracetamol.


A few years later I drove through a set of traffic lights, and had no  knowledge of what I had done, which was very distressing because my young  daughter was in the car at the time.

I had driven for two miles, but had no memory of having done this at all, however after speaking to our family doctor, I was then referred to our local neurological hospital and had a lot of tests, after which I was diagnosed as having absence seizures, which caused havoc at work, because of my electrical work etc

I found myself restricted in everything I was allowed to do.


When the Lewy Body Dementia was diagnosed around 10 years later, we were told that there was no sign of me ever having these seizures which came as a shock.

This left me a little concerned, as I could not understand how you could be diagnosed as having something, and then the same hospital department overturned the original diagnosis.

We were told by one doctor, that it could have been the Lewy Body Dementia in its early stages, something that another consultant later over ruled.



Last week

Last week we had some friends staying with us, and this topic raised its head.

I was amazed to hear that this old friend had,  had the same experience years ago, and has had seizures etc which are now controlled, but also has dementia.

Her husband and my wife were talking about the day after each accident, when we had both woken up with huge black eyes?



Although we had not met at the time of our accidents and they were not linked, it was strange to hear this, after all of these years.

I was on medication for two years to control these seizures, and had been told to stop driving etc, and take things very easy, because a bang on the front of the skull could be dangerous.


Whether there is a link between TBI and dementia, we may never know, but only time will tell, but I have heard of many people who had head injuries who went on to get dementia.

These days we are hearing quite a lot about sports personalities like rugby and football players going on to get dementia after head injuries, so I am starting like others to ask if there is a link

     
Coincidence or what?

Monday, 24 July 2017

REM sleep disorder and acting out dreams

REM sleep disorder causes people to act out their dreams

Researchers have a non-invasive diagnostic tool called a liquid biopsy that replaces cutting.




It's a condition that most of us have never heard of, but REM sleep disorder is most common in men who also have Parkinson's disease, or Lewy body dementia.

When most of us sleep, our bodies enter a state of muscle paralysis. People with REM sleep behavior disorder lose that, and are capable of acting out physical activity in their dreams, which can be violent.

Orvis "Rig" Rigsby and his wife, Karen, loved theater and travel.

"He was a theater professor and I was a theater person so for me it was really. There was an immediate connection and we had a similar sense of humor and it was just a lot of fun," Karen said.

But just a few years ago, Rig started showing signs of dementia.

"He had an incident where he got very disoriented and lost in our backyard and that's when we started looking for help from a neurologist," Karen said.

At first, Dr. Ira Goodman thought Rig had Alzheimer's disease.

"And actually I initially referred him for a clinical trial for Alzheimer's disease but right before he entered I changed my mind," said Dr. Goodman.

Instead, Doctor Goodman diagnosed Rig with Lewy body dementia and REM sleep behavior disorder. The condition causes a person to act out violent dreams.

"There have been fractures, there's been subdural hematomas, and as far as spouses or bed partners, there's been reports of up to two-thirds of bed partners being injured during an episode," Dr. Goodman said.

"Sometimes he would just start yelling or sometimes he would start punching around. Sometimes, it was like he flew off the bed," said Karen.

Currently there is no cure. Rig wears a patch that helps ease the symptoms, but keeping a watchful eye is the best defense.

"If he's having a bad night I'll still sleep in the bed with him and hold my hand on his shoulder," said Karen.

Dr. Goodman and Karen Rigsby say not to be afraid of getting evaluated if you notice any symptoms.

"I tell everybody, don't waste time, don't waste time, don't wait, don't wait, don't wait. That's all you can say," Karen said.

A national phase three clinical trial is underway for a new drug called Nelotanserin to treat the REM sleep behavior disorder. Klonopin, an anti-anxiety drug, called Clonazepan in the generic form, is most commonly prescribed, but it has side effects. Another option mentioned by mayo clinic, is to take a dietary supplement called melatonin. By the way, Karen says her husband Orvis still loves theatre, movies, music and dance.

If you would like more information, check out the medical breakthroughs on the web at www.ivanhoe.com.

Sunday, 23 July 2017

Nine Lifestyle changes may reduce risk of dementia

Nine lifestyle changes may reduce risk of dementia

Behind the Headlines

Thursday July 20 2017[

Regular exercise may help lower dementia risk
"Nine lifestyle changes can reduce dementia risk," BBC News reports. A major review by The Lancet has identified nine potentially modifiable risk factors linked to dementia.
The risk factors were:
  • low levels of education
  • midlife hearing loss
  • physical inactivity
  • high blood pressure (hypertension)
  • type 2 diabetes
  • obesity
  • smoking
  • depression
  • social isolation
However, it's important to note that even if you add up the percentage risk of all of these factors, they only account for about 35% of the overall risk of getting dementia. This means about 65% of the risk is still due to factors you can't control, such as ageing and family history.
Although not guaranteed to prevent dementia, acting on the risk factors above should improve your physical and mental wellbeing.

What is dementia?

Dementia refers to a group of symptoms associated with the gradual decline of the brain and its abilities. Symptoms include problems with memory loss, language and thinking speed.
The most common cause of dementia is Alzheimer's disease. Vascular dementia is the next most common, followed by dementia with Lewy bodies.
For more information, visit the NHS Choices Dementia Guide.

Where did the review come from?

This review was written by the Lancet Commission on Dementia Prevention, Intervention and Care (LCDPIC). The commission is established by convening experts in the field to consolidate current and emerging evidence on preventing and managing dementia. It generates evidence-based recommendations on how to address risk factors and dementia symptoms. These are presented in this review.
The LCDPIC endeavoured to use the best possible evidence to make the recommendations. However, in cases where the evidence was incomplete, it summarised the balance of the evidence, drawing attention to the strengths and limitations.
The media in general has covered the review responsibly and accurately, with helpful comments from experts in the field.

What does the review say?

The review examines aspects of how better to manage the burden of dementia: the risk factors, interventions for prevention and interventions for treatment.

Risk factors

The LCDPIC discusses the effects of several different risk factors potentially linked to dementia.
The review reported population attributable fractions (PAFs). PAFs are an estimate of the proportion of cases of a certain outcome (in this case, dementia) that could be avoided if exposure to specific risk factors were eliminated – for example, how many lung cancer cases would be prevented if nobody smoked.
Using the available evidence, researchers calculated PAFs for the following risk factors.

Education

Less time in education – specifically, no secondary school education – was responsible for 7.5% of the risk of developing dementia.

Hearing loss

The relationship between hearing loss and the onset of dementia is fairly new. It's thought that hearing loss may add stress to an already vulnerable brain with regard to the changes that occur. Hearing loss may also increase feelings of social isolation. However, it's also possible that old age could have a role to play in this association.
The LCDPIC analysis found that hearing loss could be responsible for 9.1% of the risk of developing dementia.

Exercise and physical activity

A lack of physical activity was shown to be responsible for 2.6% of the risk of dementia onset. Older adults who do not exercise are less likely to maintain higher levels of cognition than those who do engage in physical activity.

Hypertension, type 2 diabetes and obesity

These three risk factors are somewhat interlinked; however, all had PAFs lower than 5%, with hypertension contributing the greatest risk of the three:
  • hypertension – 2%
  • type 2 diabetes – 1.2%
  • obesity – 0.8%

Smoking

Smoking was found to contribute to 5.5% of the risk of dementia onset. This is a combination of smoking being more widespread in older generations, and there being a link between smoking and cardiovascular conditions.

Depression

It's possible that depressive symptoms increase dementia risk due to their effect on stress hormones and hippocampal volume. However, it's not clear whether depression is a cause or a symptom of dementia. It was found to be responsible for 4% of the risk of developing dementia.

Lack of social contact

Social isolation is increasingly thought to be a risk factor for dementia as it also increases the risk of hypertension, heart conditions and depression. However, as with depression, it remains unclear whether social isolation is a result of the development of dementia.
It was found to contribute to 2.3% of the risk of developing dementia.

Prevention of dementia

The review highlights that although there are potentially modifiable risk factors for dementia, this does not mean dementia as a condition is preventable or easy to treat. It is evident that there are multiple risk factors contributing to the onset of the disease. However, some interventions that could prevent onset include:
  • Using antihypertensive drugs, such as ACE inhibitors, in people with hypertension.
  • Encouraging people to switch to a Mediterranean diet, which is largely based on vegetables, fruit, nuts, beans, cereal grains, olive oil and fish. This has been proven to improve cardiovascular health, and may help with the symptoms of type 2 diabetes, obesity and hypertension.
  • Encouraging people to meet the recommended physical activity levels for adults. Again, regular exercise may help with the symptoms of type 2 diabetes, obesity and hypertension.
  • Using cognitive interventions, such as cognitive training, which involves a series of tests and tasks to improve memory, attention and reasoning skills. The review points out, however, that the clinical effectiveness of most commercially available brain-training tools and apps is unproven.
  • Encouraging people to become more socially active. This could be by organising social activities – book clubs, for example – for older adults. 
  • Continuing to provide support to smokers who want to quit.
Read more about ways to reduce your dementia risk.

Guidelines to halt dementia

When I read the guidelines for stopping or halting dementia the other week, I was left feeling as if something wrong, some where along the l...